Survivor Archives - Simplify Cancer

Hello, my friend, and welcome to Cancer Can Give! in this special series of the Simplify Cancer Podcast, we share inspirational stories of people who went on a grueling journey through cancer and yet, they found their own way to live, grow and give in a way that helps others. Today, it is my absolute pleasure to speak to Trevor Maxwell, a proud man, men’s health champion founder of the incredible Man Up To Cancer. Links MAN UP TO CANCER Man Up to Cancer Podcast Man Up to Cancer – The Howling Place – Facebook Man Up To Cancer (@cancerwolves) • Instagram Video   Full Transcript Glad you can be here. Let’s talk to Trevor. Great seeing you. Thank you. again, thanks for your patience and willingness to speak with me. The cancer journey is full of bumps and crazy turns. Then when you become an advocate, things kind of like the map to cancer movement has kind of been taken off. Just kept me super busy. I appreciate it.   I was so thrilled to have you so thrilled to talk about you and your story. I really want to I first of all, I want to go back in time. I want to go back in time, what was life like? What was life like before cancer? Life was great. I was 41 years old. My wife and I live here in Maine, on the on the Atlantic Ocean, basically, about a couple hours north of Boston, and been here most of my life. We have two daughters. sage, and Elsie, they were 12 and 10, at the time of my diagnosis, and everything was just trucking along. Before cancer, I was a pretty healthy guy very active. just enjoyed all the outdoors. Living here in Maine is a great place for the outdoors. I was a journalist for many years. Then, at the time of my diagnosis, I was doing my own public relations, consulting, just like a one-man company. My wife was a teacher, and the girls were just going through school, and it was like prime of life. It was good.   You’re on a kind of trajectory through life. Things are going your way. Then it just hits you, so tell me the moment. How did you find out? You’re right, you’re just kind of going along, and you have all these like illusions in your head, you tell these stories yourself. I’m going to live till I’m 80. I’m going to see my grandkids you just have this imagination of what the steps are. Then cancer comes along. I say, sometimes I use the phrase life asteroid, because it’s an asteroid has hit you and your family. It’s like my God, I went from a 41-year-old mid middle of life, dad and husband and worker to “a cancer patient” facing metastatic colorectal cancer at age 41. With young children, and boom, life asteroid.   That’s a beautiful way of putting it because exactly. It is like an asteroid that just blows up into your world. What was what was the biggest change for you, Trevor? I mean, I think at first it was just real physiological shock. People don’t talk about that enough. The shock to your system. It’s like you’re in the matrix. Then one day you realize oh my gosh, this might kill me like and soon so there’s the shock. I went into a period, a period of deep mental health struggle so I think the biggest change was like I’d always been a pretty positive person, outward person I struggled before cancer a little bit with typical depression, anxiety so many others do. When cancer hit, and the idea of possibly dying at a young age and leaving my kids behind, and my wife behind, it just crushed me emotionally. I went into a pit of despair man, clinical anxiety, depression, the whole works like I was on the floor. There was a lot of days when I would just be even functioning. It was that bad. I thought I was going to have to go into the hospital for my mental health, not even my cancer. Right. For the first thinking like six to eight months of my journey. It was it was like a pit, and it was crushing. It was just emotional turmoil.   I’m so glad that you brought this up, man, because it’s something that does not get talked about. Mental health, with cancer, my God, I’ve gone through five major surgeries, more than 50 rounds of chemo and immunotherapy. All this stuff, like countless blood draws the whole physical stuff, and none of that, that all of that is minor, compared to the emotional challenge that I faced as being a relatively young dad and father going through cancer and you’re right. That’s one of the reasons why Man Up to Cancer exists and why I am a patient advocate is that mental health and those challenges are not talked about nearly enough and especially among men.   It goes straight to the core of your identity as a man as a father. It just throws everything up. We’re going to talk about man. I want to know you went into that pit. I know what it’s man. You stand on the edge? You look down into the abyss. What was it like and what’s helped? It was it was hell; it was like literally being in hell. I am. Here’s what helped, love. My family. For a guy who got stage four cancer at 41. I’m honestly the luckiest guy in the world. I have a wife and two daughters who just loved me through it, I wanted to go away. I didn’t want to be a burden to them anymore. I’m leaving, I’m going into the woods. I just I can’t. My identity was just destroyed. I just wanted to protect them. I didn’t want to be a burden anymore. I’m leaving. They’re like, “Hell you are.” My wife really was they all gave me that like that love. My wife gave me that tough love of being like hey, you need to get help. Like I don’t care if you live another year or another 40. Like we need you to be back engaged with us, we need you. You can’t just check out. That was tough to hear. It was what I needed to hear. that’s really when I got over the first barrier, which is usually the barrier for men, when they’re facing this type of life asteroid, which is accepting help accepting that you can do it on your own. Like I reached that point where I realized my anxiety, my depression, the cancer stuff, I could not do it on my own. That’s the point, probably about six months in when I really started reaching out for the supports that I needed to get out of that pit. That pit is huge man., I know that people try to climb out of there on their own, but it doesn’t, it usually doesn’t happen.   That’s one of the things that I certainly regret not doing going through cancer is not getting that help. Not getting it early enough. It’s because it’s like its cancer. It’s like supposed to be tough. We’re taught not to need help. Most of us are raised kind of as men to that that rugged individualism like I can handle this, I can handle my business, I got this. In some things in life, that’s not bad like home projects, etc. I will say like with cancer, I cancer just crushed me in a way that no other challenge had. I reached out for counseling. I reached I went to group counseling, individual counseling, I started meeting people online, who were going through the same challenges I was with the same cancer type, kids with cancer. That’s where I found kind of the magic of that patient-to-patient movement and learning and because I was totally isolated. Then through online social media and through my counseling, which is here locally. I wasn’t isolated anymore. that’s when I started to be able to climb out of the pit.   You’re talking about counseling. I think one of the things that scares people away, I know it certainly scared me away that counseling or working with a psychologist. It’s because you don’t know what to expect. can you talk a little about what’s that’s like? Totally. I mean, fortunately for me, I actually had a background like I had gone to counseling prior to cancer for just life and anxiety and relationships with my family. I kind of had a sense of what it was going to be like. You’re right, a lot of the guys in my group have that resistance are hesitant to talk about it. You know what, and I will say, if that’s not your thing, fine. there’s plenty of tools in the toolbox. Counseling is just one of them. I mean, there’s fitness, there’s exercise, there’s nutrition, there’s meditation, there’s, there’s all kinds of tools that you can use and, and the online communities. There are all kinds of tools that you can use to avoid isolation, counseling just happened to be one that really, really worked for me. Honestly, you just go in there and you’re, you’re the one doing the work. You’re the one like sorting through, you’re the counselor’s job is to just absorb it, and like maybe give you prompts, maybe give you some ideas, some homework, just to move the process along. You’re the one sitting down in that judgment, free space, just being able to say all the stuff like so for me, I didn’t want to sit here at night and talk to my spouse or my close friends about the real shit that I was feeling about cancer. I could go to this person who’s a total neutral party and say the things that I was terrified to say, I feel like I’m going to die. I’m my will to live is pretty low right now that stuff that is like really vulnerable. That’s where I would do it is there, and I felt like to get that out. Sometimes even just getting that out, getting those emotions out and just being able to process them in a safe place. I know, that’s like a trigger word. For some people. That’s the safe place to do it. Counseling for me, it was that and still is that place where, and sometimes I didn’t even know what I was going to say? I get to counseling. This is stupid. I don’t know what to talk about. I don’t have anything to talk about. I’m done. Then five minutes later, I’d be summoning up my like deepest fears and anxieties and stuff and like working through it. I mean, it’s not for everyone, but it’s a tool.   I love that you I love that you bring up the fact that in essence, you’re in control. It’s not like somebody did this. Totally. You’re in the driver’s seat. You’re in the driver’s seat, you get to control all the work all the conversations. That’s a good point.   You said like the make you do stuff. It’s true that like you discover things about yourself. Sometimes you say things out loud that you go, my God, did I? Is that really how I feel? And it is. Absolutely. I think there’s a lot of guys who, who think, “I’m not, I’m not like a sissy, I’m not going to go to counseling, and they’ll take away my man card.” My whole message is keep your toughness, you’re going to need every bit of your toughness to go through cancer. You’re probably also going to need to open up a little bit, you’re going to need to grow that heart muscle? It takes courage to accept help. That’s what I’m trying to do is say whether it’s counseling, whether it’s meditating, whether it’s music we got, there’s some badass guys out there going through cancer, who also do music therapy, or paint, or have kittens that they’ll take care of to help them through this shit. It’s kind of like a new definition of masculinity is really to you can keep those traditionally masculine values, strength and assertiveness and leadership. You can also just incorporate in some of the, some of the more heartfelt stuff to that and the more vulnerable stuff that doesn’t make you weaker, it makes you stronger, because you’re going to. You’re doing those things to be healthy to be there for your family to be there for your community. Right. You’re using the tools to like and to help your survival. People who isolate going through cancer have lower survival rates, this is a fact there’s plenty of research to back it up. That’s big part of my message is you can’t stay in your man cave. It’s not good for you, man.   So powerful man. It’s so true that it’s not just about you? For me taking that on was huge. Because you feel it’s, it’s about my wife, it’s about my son. It’s about being there for them and being a normal person, so that I’m not going to just go away and lock myself into my own world. 100% man spot on.   Absolutely. I love how you bring up the importance of connecting with people online, maybe sometimes in person today in this online world. Tell me about how that works. how does it how vital is it to have a community. Oh my God, he’s in this community. Thank you for that question. This is you get me going on all my passion topics here. I was I was a total social media skeptic prior to cancer. I didn’t use the platforms very much like most people my age I had a Facebook account, but I didn’t really use it for anything. I’d post a couple photos here and there. I just thought it was political garbage. People judging each other and like fake bull crap. I was whatever. Then cancer hit. look, I was 41, I was facing a stage for colorectal cancer diagnosis with the young children, in my small town here in Maine, I couldn’t just go hang out with a bunch of people in that same way. I really needed to connect with people who were facing a similar challenge. Like down to the level of being, we’re walking the same path, basically. I couldn’t do it right here in my hometown, and I’m like it’s online, where you can find these people. I’m going to give the example of Colon Town. Colon Town is a is a network or a collection of they call them neighborhoods on Facebook, it’s private, it is run by and populated by colorectal cancer patients, survivors and caregivers that’s the community. You in colon town, you can drill down specifically like I’m in these neighborhoods, for people with my specific biology of cancer. I’m in a neighborhood for people with young children, people who have CRC with young children, so and like all these different groups from what I needed, and then there’s like the downtown area, which is everyone. Colon Town opened my eyes, and I met dozens you can meet people from across the country and across the world who are walking that path with you. Number one, that is just priceless, in and of itself. Then here’s the real crazy thing. Number two, a place like Colon Town isn’t just like a support group. It’s not just I’m here for you. I’m here for you to, that’s great. It’s honestly like a think tank is where I have learned so much about my disease. they have people who have CRC are engaged, who are scientists, and medical backgrounds. They bring in doctors to do webinars and like do presentations and it is about empowering yourself to know about your disease, because I thought, naively, when I got diagnosed, that I was going to learn about my disease and my options, everything else from my providers. As it turns out, the providers are generally too overwhelmed. They are they don’t have the time and capacity. They’re serving hundreds of patients. it’s not malicious, they just don’t have the capacity to spend that extra time with you on your disease and like go search all around. If you go into a place like Colon Town, which for me with colon cancer I learned, it’s that patient to patient education. I learned about my treatment options, people were like they don’t have this option for you where you are, but maybe they have it over down there at Moffitt in Florida, or at Fred Hutchins in Seattle or MD Anderson in Texas. All of a sudden, you start getting exposed to the like the latest and greatest options in the field. It’s just like a little like online laboratory. you get the best of both worlds, you get the exposure to the camaraderie and knowing you’re not alone. There are people on them in there in their 30s/40s raising kids being diagnosed with this. then you also get the learning piece of it, which gives you the best chance at survival? Like I said, if you’re not out there connecting and learning from these other patients and hearing what is out there, you’re not giving yourself your best chance at extending your life and possibly even saving your life. I know many people whose lives literally have been saved because of information they got in online groups.   Absolutely, because that’s where you get to find out about clinical trials. Yes, that’s where you get to find out about so many other things. I’m so grateful that you are bringing this up man because it’s also a place where it helps you to get, I think, help with your mental health because for me I was going through testicular cancer and finding out about, talking to people about addressing some of those fears that I had about what life would be like after chemo and surgery after this. It’s a real thing that helped me to go on what, I can kind of see that there is a path to survive. There’s a possible path to live man. Absolutely. That’s the power of community. Again, social media and the internet have opened up that whole new world it’s only recently that we’ve had the ability to do this. I can’t say enough about the patient-to-patient movement and what that means. Again, doctors, they can’t be expected to know everything all the time. A lot of them are just drinking from the firehose of information and trying, it’s tough, they have a tough job. In the past, there was kind of this paternalistic model of healthcare. It’s you go to your doctor, they tell you what to do, they know everything, but that the problem is, especially at the community level, in rural places, a lot of these oncologists or maybe they’re treating, all types of cancer? They’re not specialists in your type. Right? I can get going down that rabbit hole all night. I guess the point is, patients have the ability to learn, it’s the same thing. Like if you were building a house, and you hired an architect that architect is going to be the quarterback of figuring out what your house should look like. you can read tons of books about architecture, you can learn about it, you can get empowered, so that you’re a partner in that so that you and your architect can have discussions like what, maybe this and maybe that. This idea of the Empowered patient, the old model being that kind of like they just told you what to do. Now and I’m not talking about patients who just go on Google for a day and come up with some crazy ideas? I’m talking about like real learning, and real learning and taking that fear in colleges and saying, hey, I’ve we were talking about this in Colon Town. this, this new clinical trial, or this new drug? what do you think? And most oncologists that are worth their salt will say, “Let’s take a look at it. Let’s talk about it.” If your oncologist doesn’t want you to be part of your own care doesn’t want you to be part of saving your own life, you need to fire your oncologist.   I’m so glad that you bring this up. If you don’t feel like that person is clicking with you, whether that’s your oncologist or any other specialist, move on bring in somebody else, man, It’s your life, it’s your life on the line, and no one even you’re even the best oncologist. They’re not going to care as much about your life as you do. you have a role to play. I don’t care what background you’re from, with, with the resources available and with all these other smart patients out there, you don’t need to learn it all yourself, you just need to find the right smart patients to help you.   Exactly. No one is more invested in your well-being your way of life than you are yourself. Let’s talk about us guys. You talked we spoke about men and we’re going to talk about Man Up To Cancer. You’ve spoken with so many so many men shall have what is it that makes us different? We have different needs? Absolutely. I mean, we’re talking like 1,000s of years of biology and 1.000s of years of sociology like culture, and those things intertwine. Science shows us now that there are in general, we’re going to put the asterisk there in general, that the sexes respond differently to a cancer diagnosis and to a life-threatening illness. It’s one of the basic, it’s one of the most prominent gender disparities there is, and there’s tons of research on this. in all the leading journals, it’s been there. It shows that when facing a life-threatening illness, men in general, tend to isolate tend to withdraw from activities and people that they enjoyed, tend to have higher mental health problems, such as anxiety and depression. There are consequences to that, which we’ve already discussed. The reason, the main thrust of why this is, is that we are brought up in most cultures, men are brought up to feel like they’re supposed to fix it. They’re supposed to be the fixers, you’re supposed to be the problem solvers. Then you’re confronted with this massive health challenge that you’re not prepared or equipped to face. There’s that shame where that comes up again, men feel this the shame about getting cancer in the first place. Then somehow, it’s a failure. then we tend to check out and women in general are much more comfortable accessing their social networks, they usually have bigger social networks to start with. I remember a study that showed most American men don’t even have a single, close friend that they would confide their deepest feelings to not one, whereas women generally have at least three to four. Most times for the man, it’s the partner or the spouse, which is interesting? I think it’s just, it’s the way that we’re somewhat wired from the past, but also just conditioned in the present is to is to have this sense of mastery over our domains. When something when the life asteroid hits, all of a sudden that mastery feels lost. I can easily feel lost, I did it, I felt lost. I think a lot of a lot of men do. I mean, I talked to so many men going through this. that’s definitely one of the common themes is, is that theme of feeling vulnerable, like an animal feels vulnerable when they’re trapped? Sometimes that response is just to go in the cave and or go away? Like I did say, I’m just going into the woods, I’m not I’m no help at this point.   When you talk about the animals, animals are part of a pack. That speaks. that speaks to exactly what you said. You then you go back to your pack. Absolutely.   How did this Man Up To Cancer come up? How would it compel you to bring people together? As I reached out for help, and got over that first hurdle of saying, I can’t do this by myself, I just it was, there was such a glaring gender gap in the support spaces in cancer land. Here in Maine, at my cancer center, there was always at least 75% women 80% women to 20% man who men who were engaging with those services. The services available are awesome. It’s not just counselling, it is massage and Reiki and nutrition and exercise class. all of its free. This is the Dempsey Center founded by the actor Patrick Dempsey, he makes all of this free to cancer patients and their families. You can go do all this stuff to support yourself, but very few men do. That’s the first place I noticed. Then secondly in Colon Town, and other colorectal cancer spaces, colorectal cancer, people don’t know this, but it’s about 50/50 men and women. I think it’s maybe close to 55% Men 45% women who get it like people think it’s an old man’s disease. It’s definitely closer to 50/50 than people think. I’s also a younger disease than people think. There’s been a fair very an unsettling concerning rise in young onset colorectal cancer. There’s all that going on, too. In those spaces, Colon Town, Fight CRC, Colorectal Cancer Lines, again, I call it the three to one rule. Three women for every one man. I just kept thinking where are the men? All that stuff, we’ve been talking about cultural conditioning, and how men respond everything, I didn’t know that at the time. You kind of have it in your head, because everyone knows the guy who they have something hurting them for like five years, and they won’t go see the doctor because they’re I’m fine. I’m fine? That typical male, we all know that from our stories. I’ve done it too we, I think a lot of men just have that resistance to even acknowledging that a problem might exist. I started to really understand what the problem was, and what some of the reasons are behind it. I knew that there were guys out there suffering just like I was, and I wanted to be able to do something about it. That is really the genesis is kind of understood seeing the problem of this gender gap in cancer land. Then thinking, I know these guys are out there, how do we reach them? How do we find them? and then and then the coed issue. A lot of men feel uncomfortable or maybe ashamed, they don’t love being in co-ed environments, because they don’t want to be perceived as weak. If you go into Colon Town, and you’re sharing, and you know that all these women are reading your posts, you don’t want to go in there and be I totally lost my mojo I can’t I haven’t been able to have sex and cancer is ruining this and that, I think most men would say that is not a comfortable space for them. That’s another reason why I was we need to meet men where they’re at. If we know that they’re uncomfortable in that coed setting, maybe we just need to give them a place for them. There are spaces for women. Then there are spaces for men. I’m going to create a community called Man Up To Cancer.  We’re going to do a Facebook group, and the group itself is going to be just for men, a place where male cancer patients, survivors and male caregivers can just go and totally be themselves, do not have to worry about that judgment or feeling uncomfortable around the opposite sex. We’re very inclusive it’s a men’s group, but if you identify as a man and your Facebook profile says, you’re a dude, then you’re in. It’s not an anti-women thing at all, we love all the women in our lives. It’s just that men bonding with other men and having those rituals and that, that that space has been since the dawn of mankind. We’ve lost some of that recently, some of those rituals have been taken away from us, we don’t do as much of that anymore. really, this is like the old Lodge, or fishing trip or hunting trip where guys go out and shoot the shit. just it’s a cancer group. Yes, we vent about our cancer, we talk about the challenges, but we come from all types of cancers. We don’t do treatment, we don’t do sciency stuff it’s just about brotherhood, camaraderie, and knowing that emotional support, and that we’re going to have your back no matter what, no matter what type of cancer you have, no matter your age, no matter what stage. That’s where it came from. Now, Man After Cancer is the howling place group. We have about 2,000 men from I think every state in the US, most of the Canadian provinces, Canada’s coming on strong in our group. We’ve got some Aussie brothers, Rob Miller and crew down there in Australia it’s small numbers, it’s early days yet, but to me, the numbers don’t really matter. yes, we’re going to grow, unfortunately, because there’s men who could benefit from what we do. To me, we want to reach those people who need us. Like I think about where I was at with my anxiety and depression and just isolated in 2018. Those are the people that I hope listen to my podcast, or pick up or hear this podcast and say, hey, what is that whole Men After Cancer thing all about? We want quality of relationships. When you come in your family when your part of our group, you definitely are part of the Man After Cancer family. I do a podcast; I’m writing a book this fall. We have a website and social media. We just had our first annual gathering of wolves, which is going to be it is what we had our first but going forward, it will be an annual retreat. We had about 60 men their members of the group, from all around the US and Canada. We even had a guy from Belgium come shout out to David Deweil. We just had it, and it was just it was a wow, it was a transcendent experience, I think for most of the people, including myself, and we can’t wait to get back there next year. For the Gathering of Wolves in 23. I thought I had a concept that would resonate with men out there because there’s not a lot of content, specifically geared towards men in the cancer space. Like I say there’s two types of content in cancer spaces. One is so positive that it’s so unrealistic. Like everyone’s running 5ks and raising money and everyone’s smiling cancer seems like a vacation. Then the second, the second type of content is soul crushingly somber. You have cancer. It’s we’re so sorry. We’re going to, we’re going to help you through this. It’s I’m not dead. Like I’m still here. what we’re trying to do what I’m trying to do with the public stuff around Men After Cancer is just kind of show the real deal. We’re going to show the highs and lows of cancer and everything in between, but it’s going to be real.   Absolutely, man. I just saw this you saw this profound need. I’m just also want to speak to the fact that you saw the way to communicate the way to so that people hear your message and can go, “I can get behind that. That speaks to me.” I just had this idea. I’m going to do this cancer wolf pack. I was this is either going to go this is going to go one or two ways. People are going to be that’s freaking cool. I want to be part of the wolf pack. or they’re going to be this is the stupidest idea I’ve ever heard. What is this wolf stuff like who the hell is this guy? That’s why you need other role models and people to buy in. Shout out to my guy Joe Bullock follower number one, who has become the lead administrator in the Howling Place, which takes some pressure off me because then I can do all the other stuff the fundraising and the podcast, everything else. Joe bought in on the mission from day one. I say I put up the walls to the howling place, but he’s pretty much filled the seats like that guy is like the cancer Oprah, he knows everybody.   One thing led to another. That’s how things started growing. Right? I mean, yes, we just we put out the invite, Joe connected with all his people. The two of us really just started saying, putting it out to the world, hey, we have this place. that’s, that’s just for guys. If you’re going through cancer, if you like our vibe, come check it out. People ask me, how hard was it to get men to open up in the group and show you their real feelings, be vulnerable and which happens on a daily basis, by the way, in the Howling Place. It’s not all like that, we have lots of lighthearted humor, we have an ongoing war about whether pineapple belongs on pizza. I’m a purist. I don’t believe that it does, but I think I’m in the minority. I kind of figured that you’d be a pro pineapple guy. People ask me so was it hard to get them to open up? Once we gave them the space, it wasn’t hard at all, guys were ready. it was almost they were looking for a space to just come and howl and go tribal and like and just put it all out there say all this stuff. It’s kind of like counseling, honestly just saying all the stuff. What is said in the howling place stays in the howling place? People just felt like once they got permission. Then once they got role models, we’ve got so many role models in the group that are just guys’ guys, but like I said guys’ guys, but they are also we’ll share about what they’re going through. Once people started to buy into that role modeling, I mean, it was super easy. It is you don’t have to twist anyone’s arms to really, once they’re in there, they get it. The people that don’t want to do that that’s fine to we got people who don’t share a lot, people just kind of keep it light, and they’re in there. I always say, the howling place is there for people on their terms. Men on their terms, you get out of it, what you want from it. it’s there for you on your terms when you need it, how you need it. if you need it if someone comes into the howling place, and they get something out of it, or maybe they can provide support to someone else for a little bit. Then they decide it’s time to move on. I’m like great man. Not everyone wants to be around cancer guys and cancer content all the time. I get that, it just happens to be my calling. That happens to be my purpose.   That’s what I want to talk to now, is that sense of purpose? How did that come up? How does that make you feel? I just feel it’s just so aligned. I feel like everything that I had done in my life prior to just kind of fell a little bit flat in terms of except for my family.  Being a husband, being a dad, that was always like a core part of my identity. With like my professional life, I was a journalist, I did PR I loved what I did. There was always like a little bit of unfulfillment. Then all of the skills that I collected over 40 years before cancer, I feel it was kind of they were all meant to come into what I’m doing now. I’m just manifesting this new mission based on all the stuff that I was ready for, it was almost like the universe was okay, we’re going to throw you this challenge. we know you’re going to be able to do something here after you get out of that pit. That’s going to be special and help people. Once I dug out of that pit with the help of so many people who loved me, it was I was shot out of a cannon, I was just ready to go. I was fired up and it didn’t happen overnight. Like there was a lot of healing that had to be done. I still go through normal valleys. I still have anxiety and fears and depression and thoughts that are tough. The difference now is I just don’t dwell there. Right. Like it’s not clinical. It’s normal it’s appropriate for what I’m going through. I kind of just felt like when I saw the guy problem, and I and I realized that I could be one of the people to help address it. That’s a problem that I can help with, I know that I can be a bridge to guys. I’ve been told like that I connect with people from different backgrounds. I did that as a journalist, I can kind of find our common ground, no matter what backgrounds we come from, and finding that common ground, especially when you’re going through cancer just has given me the ability to make these relationships and bring people into the movement and inspire others. It was almost as if a lot of a lot of the stuff that’s happened, honestly, this is a big secret, Joe, I’ve been kind of winging it here. I did have an idea of what it could be or what it could look like. I’ve also been in treatment this whole time, or in surgeries this whole time, I’m coming up on five years, since my diagnosis, and I have not had a stretch beyond a couple months of not having treatment or surgery. There was that to, which turns out was a great thing, because all of this Man After Cancer stuff, I had to develop at my own pace with the help of others and while I was facing stage four cancer, so a lot of it was just winging it. Then sometimes when you wing it, and you just trust that you’re doing the right thing I would just get up in the morning be Alright, I want to help guys going through cancer tell me what to do. By the end of the day, I had done like seven or eight things that were aligned with that purpose. I don’t want to say that I was totally unconscious, but because I definitely had some like part of it. I almost feel like I was just putting the shoot. If I would just let it go and kind of go with it, that it would kind of take care of itself and the right people would come at the right time and find man to cancer and get involved. do that’s exactly what happened. Like I have so many people involved in Man After Cancer now and helping, leaders and it’s not just me, it’s not just Joe Bullock. Like it’s a big group of us now. Like that gave me affirmation that the universe was that my trust in the universe was valid.   That’s what’s inspiring is the fact that you were winging it? It’s kind of like a plane. No, that’s exactly right. My counselor even told me that too. She’s it’s kind of like you’re just building a boat while going down river. the plane analogy works, too. Then I got to the point I saw obsessed with it is when she’s okay, Trevor, the boats pretty much built. You might like to make some refinements, but you’ve got a pretty nice boat, and you have a bunch of people on the boat with you. Maybe you can go lay in the hammock for a couple minutes. like take turns steering the damn thing. That’s totally the Wolfpack mentality, too. When I was on chemo last year 2021. I did hideous what I call Kitchen Sink chemo, I was sick a ton. Pretty much incapacitated a lot of that year. Man After Cancer went along fine. It wasn’t just me. that’s the wolf pack mentality is you take turns breaking the trail. Then when you are not feeling or you need a rest, then you let those others lead. I think that’s the big transition for me now is to kind of see the big picture but empower others to who get it who like understand the message, who understand the purpose and the consequences, giving them the tools and just empowering them to say, hey, go do what you want to do, go run with this, again, because it’s not my thing. It’s not anyone’s thing. It’s all of us.   The change that you speak to, is what I love is that you, you got hit with cancer, it changes the way that you feel because some people say, I won’t let cancer define me. I feel like how it cannot, but it is. You don’t have a choice. You don’t have a choice.   It’s here, it’s going to define you, but you choose how is going to define you. you choose how that how that that will direct your life, from this moment on and living with purpose. That’s what it’s all about. And again, I just come back to love because I don’t believe that an individual can make that transformation without others and without love. Maybe they can I don’t know, just for me, I was transformed through the love of others, my friends, my family, my wolf pack. All of those people who have just loved me through this damn thing and that has empowered for me, to let the transformation happen like to learn to grow, I am a totally different person than I was before cancer, and in some ways, I feel like I’m a much better person. I feel like I’m more patient, more generous, more loving, more in tune with everything going on around me. The first year of cancer if you had said, but what about the Silver Linings like the gifts of cancer, I would have been okay, this is where I throat punch you. Still if I could trade it in? If I could, if I could go back or not have cancer and not have to worry about my family and my kids. my girls are 17 and 15. Now remember, they were 12 and 10 When I was diagnosed, so to get here has been such a freakin gift. If you were to say like you could be cancer, free go without it? Of course, I would. I’m not going to lie to you and be no, the gifts of this are too good. I take it in a heartbeat. He’ll take away the cancer. I don’t have that choice. Like we say cancer forces you to shed your skin and transform. It’s going to look like something it’s not going to look like it did before. The core parts of you are still there. Even for the people who get the diagnosis, go through treatment. Then our end, Edie and their survivors years later, if they’re being honest, most of those people will tell you. There was no going back to that person who was there before. it changes, it changes you, it changes everything. With love, you can channel that into something that’s super positive. I’m living proof of that, because I was broken.   So powerful that you bring it back to love. That’s what kind of completes the circle. how it all comes together, is that sense of purpose is that sense of giving and that sense of belonging with other people and the support that you need. It starts with love and ends there. Then people are look at this, it’s helping so many people. It’s also helping me. I have more support. Now, this isn’t just about altruism? I’m going to go do this great thing. It’s about helping others. In doing so I also helped myself, because if I’m having a scan coming up or something like that, something that’s troubling me, I can go into my group. I know that I’m going to have so many brothers in there that are just going to just pile on me with love and give me that fuel, I need to just get over that hump. I’ve never been more supported. that’s so the support spaces like this go both ways for the people who start them and run them and for the people who are in them.   If someone wanted to find out more about men up to cancer, what would they do? The easiest thing to do is go to ManUpToCancer.com. That’s like central hub, from ManUpToCancer.com, you can access the social media, the Howling Place group, the podcasts, there are all the pieces of it. Just ManUpToCancer.com. That’s kind of your central hub. If you’re on Facebook, and you know what, someday maybe we’ll have a different platform. Facebook was the easiest place to just start a community. most of the communities are there. If you’re on Facebook, if you’re a man, and you’re interested in checking out the Howling Place group, just search for the Howling Place or Man Up To Cancer, the Howling Place. it’s a private group. you need to put in a request to join. We are very protective of our family? We’re very protective of our group. There are so many scammers out there. It’s crazy? People try to sell stuff and like there’s bots and like everything else. if you want to join, we’re going to ask you to fill out answer a couple questions like tell us a little bit about your cancer. Just make sure you’re a human. Make sure you’re not trying to sell us some magical cure. Then we’ll get you in there. then that’s when that’s when the fun stuff begins.   You’re telling me there isn’t a magical cure? No. The people all the time trying to sell us something like some clinic somewhere or some route. I did a podcast once with my buddy Robbie Burridge. We talked about the magic Himalayan beet root, which doesn’t actually exist, but I just created it was I probably could go out and make like so much money selling that like no, this is how you because there’s people out there are, awful people who profit off of people’s misery and desperation. The tough part about Men After Caner and the Howling Place is we lose our people; we’ve lost about 120 members have passed away since we started the group. If you’re going to be in with us, you have to be at that point where you really can look at your own mortality. You can, and you can make relationships and face the mortality of your friends and your brothers. Without looking away without that destabilizing you. Again, I was not at that point early on in my cancer. I would not have been a member of the Howling Place until later on. It’s hard, it’s really hard to make these real friendships, support one another, and then lose your friends. The benefit of knowing them and walking with them and the privilege of loving them, even until the end, so far outweighs for most of us the pain of losing them I it’s painful to lose them. It was more joyous and more rewarding to have known them at all. We talked about walking each other home. That’s part of what we do. If you’re going to be in a cancer community, that is part of the deal. You got to be willing to face that to address that to really address it and clarify your own beliefs. When we’re talking about cancer, and a lot of us are stage four, we are talking about death and dying. We live in a day and age where those are subjects that most people don’t ever want to talk about. We don’t talk about death. We don’t talk about dying, we don’t talk about sickness. Guess what, humans have been doing it for 1,000s of years. we can do it too, and we can do it better. that’s a whole other show. Facing death and dying and not turning away from it. It is hard. again, the joy of being together and walking with each other on this road and supporting one another is outside of my family, the greatest privilege I’ve ever had.   That’s an incredible trip. Thank you for being here. thank you so much for what you do in the world. Thank you. I didn’t say at the top man. Thank you for all that you do for everything you do for the cancer community. We appreciate you and I’m just I’m honored to be here and talking to you from around the world.     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Hello, my friend, and welcome to Cancer Can Give! in this special series of the Simplify Cancer Podcast, we share inspirational stories of people who went on a grueling journey through cancer and yet, they found their own way to live, grow and give in a way that helps others. Today, it’s my absolute pleasure to introduce Olivia Clarke and we talk about being young adult with cancer and finding the humour where you least expect it. Olivia’s got this incredible message of making sense of your experience, through cancer, through humor, and stories and connect and she started Humor Beats Cancer, and she’s just this magnificent ray of light out in the world. Links Humor Beats Cancer | Chicago | Young Adult Cancer Humor Beats Cancer | Chicago IL – Facebook Humor Beats Cancer (@humorbeatscancer) • Instagram Humor Beats Cancer (@Humorbeatcancer) / Twitter Video     Full Transcript Olivia. Well, so good to have you.   Thank you. It’s always been so good working with you on different things and stuff. You talked that at our last event about a year ago. Really, your story was funny, but also very moving to and so people really walked away from it feeling so many emotions and stuff. I heard it was especially with yours too, your just your story that you shared about cancer and about just it just made people laugh, but also made them cry too. You hit all of the emotions. It’s really nice to be able to be on your podcast.   Thank you so much. I really appreciate your kind words. I remember you opening that fundraiser for humor beats cancer. I think it’s been during COVID because we were all online, but it’s just been such a beautiful thing to be there and to see all these amazing people there for this great cause. You put so much care, love into everything that you do like you really you really pour your heart into all of this. It really comes across. It obviously makes a difference for your incredible because, but I want to ask you how does it feel for you? I think it’s a big part of it is how does it also make you feel on the inside?   A little bit about me, I had cancer first, breast cancer stage two in 2015. Then in 2017, created Humor Beats Cancer, which is a nonprofit, that encourages using humor and writing as coping tools to deal with cancer. We have to do funny care packages for people going through cancer, we have a grant program, and we do open mics, where people read their funny stories, either virtually or in person. Then we also tried to think of interesting ways on social media to get people’s attention and to get them to share funny stories and to connect, so they feel less alone. For me, when I had cancer the first time and so then I was diagnosed again in last fall, in 2021. This time, it’s stage four, and it’s metastasized to different organs and such. It has different meanings depending on where I’m at in my cancer journey. When I was in remission, it really was about how can I take my experience and try to find ways to make people feel less alone and to feel and to get them to laugh when that’s the last thing they could possibly think about doing? Usually that’s through crude humor and just like having a good time is showing the real point of it is to show two things to show people feeling that they can feel alive while having cancer that they’re not gone and they’re still you’re living and to just to connect people who feel alone. For me, that’s what it’s done for me is it really has reminded me, I’m going through the beginning stages of stage four. It’s interesting to learn about people who’ve been going through it for years, and it gives me hope. If someone would have told me stage four cancer, I would have been freaking out and thinking. You can live with it. It can be like something that you live with. Sometimes it’s not, sometimes it hits you; you find out you have stage four, and you have a few months to live. It shows that there’s more than just one way of cancer happening to a person, and there’s and it can affect you in different ways. It makes me understand it a little bit better, and also feel less alone and feel like there’s a chance that I can keep fighting and keep doing what I can to stay alive. I really believe that this group of people ages like 20 to 45, for example, people don’t focus on them and their cancer enough. There’s a lot of support for childhood cancer, as well as a lot of for the for the elderly and older people who are going through cancer, but this middle group seems to get lost sometimes in the middle of everything. It seems that they don’t really know how to deal with this group of people when they have cancer, because these are people who are still working, and who need to work, they haven’t built up a savings or built up a lot of ways to pay for the their treatment, and they still have to work, they maybe want to have kids or a date, and it’s all happening at the same time that they have cancer. That too has been helpful to me to know that while the medical community may not be looking at this group of people as closely as they can, our nonprofit, at least can bring everybody together to talk about things that upset them things that they wish were different, or to ask questions this is happening to me what should I do? People provide their own just perspective. I mean we’re not doctors, but like to say when, when my feet started peeling, this is the stuff I did. There are so many things I didn’t realize with cancer. It’s been supportive to me, and also just makes me happy to know that I can help people in some tiny way. It makes me feel like my life, I did something good for people. That’s always been my goal. I just really want to help people in some way, and, and help people feel less alone, because I’ve felt alone times through my life. That’s really what it’s done for me.   That’s beautiful love, it just speaks to my heart. I’m so glad you brought up that this whole young adult going through cancer and experience in the sense of being alone, because oftentimes, when cancer hits you at this time, it’s like you say it’s life interrupted, because you’re going on some a journey. As if something just throws you off, and all of a sudden, you have to completely change things around. You’re not in a place where people around you. Maybe when you’re older, you’re in a place where people around you they understand how to deal with grief, they understand how to deal with difficult times that it’s a different situation. What do you think because, obviously, you’ve seen a lot of folks, young adults in their 20s and 30s and 40s go through cancer, what do you think that we have in common?   What we have in common is we have so many more dreams ahead of us, we have so many more life stages ahead of us. Just as you said, that’s a great way of putting it, it’s like life interrupted. It’s just really, there’s just a lot of like sadness, honestly. There are people who maybe went to college and you’re like, I’m going to be this when I when I’m done College, and then boom, you get hit with cancer. Then you have to put that on hold while all of your friends are advancing during the highlights of life having kids, dating, marriage, promotions at work, things like that. All of that gets put on hold, and we’re living in this limbo of should I date? No, or yes? Should we have children? Yes or no. Even like if they get married whether going through cancer treatment, it’s probably you didn’t want to be bald, if you’re a woman at your wedding. I think for these other groups particularly the older, those who get cancer older in life, have had a chance to have do all those things and have that chance to see their children grow up or even meet their grandchildren, where there’s. There are so many families who lose one of their loved ones when maybe their kids are two or three or four. They will know a totally different situation and, and the kids will miss out on stuff and the parents will miss out on things. I just think what connects us all together is that limbo, not knowing how our life is going to be. I know that nobody knows what’s going to happen with them, or if they’re going to get hit by a car or whatever. You are immobile almost, because it’s hard to make decisions. It’s like, at the start, when I found out I had stage four cancer, one of the doctors said, I was like, so how serious is this? They unkindly said that, well, maybe you should start working on that bucket list. I felt like that was such a horrible thing to say to someone, but people don’t think that that’s what they should say or not say and like. I think that that’s what it is, is that we’re just all in this time of indecision where we could just keep trying to stay alive, but also want to be living life our family and friends are.   You described it beautifully because you are stuck in this in between land, you’re constantly in between things. I think the other thing that I just remember coming home, I’ve done like my operation and chemo, and I remember feeling so overwhelmed and things that really made sense before, they certainly don’t make sense now. You have to reinvent yourself at least once. Under this reinvention process you have to find something again, that you can be connected to something that you’re passionate about. That’s why I want to ask you though, because you went through this process and you. You found your way to create humor beats cancer, but how did you how did you lead up to it? What made you think about what to do next?   After I was diagnosed the first time, I started I started thinking about my life and how I didn’t feel like I wasn’t doing enough. I started first just volunteering, and not cancer related volunteering, but just working with people who are poor or need food, or people who are trying hard to raise their kids in a poor community. I started volunteering with them and really trying to help. Then as I was going through cancer treatment, I kept seeing these funny situations happen. That I just thought were dark humor, funny things. I wondered if any other people had been seeing those kinds of things. I took a stab and I decided, well, I’m going to scrape this nonprofit. I’m going to start it off with just a blog. Then it just started growing. I started picking up ideas. I’m always trying to create projects, and there are so many projects I’ve worked on that just failed or did it, they kept trying. I and I just kept thinking and then I just really believed in this idea. I just kept talking about it so much. Finally, I’m just going to try it. Then I just kept growing. When my mom passed away, and we said instead of giving flowers, if they could give money to his credit grant program in her name to Humor Beats Cancer. We were able to do that. Then care packages, I realized there are so many care packages that are just so not useful. They’re just a bunch of branded materials that don’t really help in any way. I started thinking about, well, what would I want if I was one of the care packages, and so I’ve tried to make it more special, funnier and more appropriate for our age group than what it’s what I’ve seen other places do. I started doing that I really didn’t want when I when I got cancer, I received this book and I just have lilies on it and it looked like it was like, here’s your roadmap to dying. I just did not want to have that that vibe so we stay away from a lot of lilies everywhere and pink and were more like red and primary colors and things like that to show that we can talk to you as at your age, and we could talk to you in a way that we use profanity. Most of these nonprofits don’t even do that. Most don’t do those kinds of things. I really think that’s what got me started. then I just, I just feel like it’s been successful, and it’s keeps growing, and I just know that it’s doing good. That’s all I can ask for is for it to be doing good.   I think it’s such a beautiful thing, first of all, that you said that you’ve done a lot of things and, and so many of them failed, because it’s so true, we do things and we all have dreams, and we have ambitions, and sometimes they just they don’t work out and that’s part of life.   That’s also like, a message for people going into cancer is that like, isn’t that how they know the doctors treat it, like we try a medicine or if treatment for a while that that doesn’t work, we go to the next thing. That’s how I’ve operated through life, I have trouble giving up on ideas and things that I really feel passionate about. I keep trying different ways and then I’m getting closer and closer to getting it right the first time. Usually, it takes like five, six times before I can make something how I truly see it in my head and stuff. I think that’s like the message is just don’t give up on anything. I and I think maybe it doesn’t mean that we’re going to all be cancer, I’m going to beat cancer, but at least it makes life more fun to really be in that you have some sort of control over something. I think that starting a project or making jewelry or knitting scarves or things like that are all things that people could be doing well, they’re sitting in chemo chair, or whatever. That might make them feel good. They’re contributing something to the world. Whether it’s just to make one or two people smile. That’s great. That’s perfect. That’s the thing to do. I know it can be hard when everybody’s so tired, because I’m tired all the time. You hope that the positivity will give you energy and it’ll help carry you through.   Exactly, Olivia, it’s so powerful, what you say because it really connects you with what it is that that helps you to get through a difficult time and connects you with something that that just lights you up in some way and gives you that energy, in a time when you probably needed the most. I find it very inspiring how you talk about that you started. You started from just like taking the first step and then it leads you towards something else. Then it leads you to something else. It probably leads you to a place where you didn’t really plan out to be you didn’t have this project plan mapped out, you just started with something and it just kept growing like you say, so it’s not it doesn’t have to be this overwhelming thing.   Yes, which is something I’ve learned over the years because I used to get, I think of a project and I would never start because I was always overwhelmed thinking of like the next the next step or the end goal and how am I ever going to get there? I’m trying to be better about that. I think Humor Beats Cancer is a good example of me taking it step by step because sometimes we’re not as big as the other organizations or we’re not doing this or that and stuff. It’s really hard not to compare yourself but that does really no good to like to compare yourself because everybody’s on like a separate journey on their projects. I’m trying to be trying to try to be more kind to myself and not being like man, get your ass in gear, it’s definitely been an interesting journey with Humor Beats Cancer.   Exactly. I’m so glad that you brought this up believe it because it’s so special and I think that’s what we do in our age as well, it’s like we end up comparing ourselves to other people where they’re at, where they’re where they’re going and you got to be beating find ways to be more kind to yourself and not beat yourself up or saying well this person has got this, and I may I might be in a place where I’m struggling. I don’t have what they have and what helps you to feel to be more kind to you?   It’s hard, it really is hard because I’m really tough on myself. I just am a type A personality through and through from a baby on up. I’ve always been. I really have I have a really solid group of wonderful friends and loved ones who I just really lean on. Sometimes they have to remind me that to be like Olivia, it’s fine, you’re doing a lot, you’re doing enough. I also go to therapy, and that’s also reinforced there too, because for so long I would ruin fun things that I have accomplished. I’m thinking, well, it was it was okay. It could be better; it could always be better and stuff. I think it’s having people around me remind me of the good that I’m trying to do and remind me that I’m I am making a difference. I don’t have to be Oprah. I can be I can try to take some of Oprah’s lessons and use them to my benefit and stuff. It’s about and it’s also just about remembering the good times and remembering I had a really great experience at this event. I feel like others did, too. That this was a good day. It’s really hard. My advice for anybody going through something similar is just to have a strong group of people around you, who are there to remind you, and during those times when you get down on yourself, and then also just to really keep little notes on your mirror that say you’re awesome, or you can do this or that. I think that’s been really helpful. I have like three or four on my on my mirror right now. I know other friends should do that, too. When you look in the mirror in the morning, you can see those and be like, yes, this is how I’m going to start my day. I don’t want to pretend to be good at this, because this is really hard for me. I really try. I really try. I think that’s some of the ways I try.   No, that’s what makes you perfect, Olivia. I love this advice, putting stuff on the mirror. It’s real, because that’s how you look, and you look at yourself. To me, it’s been almost a revelation at one point of my life, to look at myself in the mirror and tell myself good things about me. It’s hard, isn’t it? Like sometimes you’ve got to say good things to yourself.   It is it’s so hard. It’s so much easier for me to compliment someone or to try to lift someone up that I that I don’t think about doing that for myself. Like there’s some sort of saying, I can’t remember who said it, but something like, the way you talk to yourself, would you let people talk to your friends that way? Like if you’re, if you’re down on yourself, and you’re beating yourself up, but if you saw your friend doing that you would stop them and say, no, you’re amazing, you’re great, you’re doing a wonderful job. We have to treat ourselves just like we treat our friends and our loved ones, we have to celebrate ourselves too. Not in like a cocky way, but just in a way that makes you happy to still be alive. I think that’s super important for people going through cancer, because it’s really easy to go come down on yourself and live. there are many days when I have a bad day. I’m just like, I just don’t know if I can get up and work and then do all these things and stuff. Then it just like telling yourself either today’s not the day to do them, or maybe do one thing. Maybe that’ll help you show that you accomplished something for the day and stuff. Those are some things I tried to do. I don’t want to have cancer; it’s slowing me down. I don’t want to be slowed down. I want to keep moving. I want to keep doing things. I hate that cancer makes that more difficult to do.   Exactly. I love this one thing that day. I’ve also arrived at this live as well is focusing on getting one thing done every day. Sometimes it’s something that I’m really proud of. Sometimes it’s like taking a shower or whatever. It doesn’t have to be some epic thing. Then you feel like, I’ve done it. I also want to circle back to what you said like when to talk about it with your friends and family. That’s not an easy thing to do either sometimes, but sometimes you have people around you but but like talking about things like difficult moments is hard. Sometimes you don’t know how to put things sometimes you don’t want other people to feel awkward or weird about it. It’s so vital to find ways to talk about going through a difficult time with people around you. That’s what they’re there for.   For me, sometimes it’s hard, when this all went down in the fall and then also got worse at the beginning of the year. All my friends were like, what can we do? What can we do? It was so hard for me to think of like, because I like to be self-sufficient. It really was about like it really was about I’m trying to find little things that I can ask people to help me with, could you get my groceries? Or could you carry my packages up that are at the front desk. Little things like that, people really felt good. They felt like they were helping. I realized that it’s important not just for me, but for them too, because they don’t want too just be helpless. I think that that has been an important lesson I’ve learned the second time around, that maybe I didn’t understand before. That’s been a real challenge. It’s definitely something that’s been helpful is just to include friends and family into my journey in different ways. I can’t say I do well every time but I’m trying for sure.   It’s super empowering. As you say, the people who truly care about you, the people who really care about you, they will be so grateful, right when you ask them to do something, because as you say, it gives them an opportunity to step up to be there for you in a meaningful way. it also prevents help that that you don’t want.   Exactly. If you don’t share what you need, you’re going to get random stuff that you don’t need. It’s definitely about really little things. Like, it’s so funny, because I was like to let it’s difficult to think of things, but then even just like a ride somewhere, or to a doctor appointment, or something like that, it can switch it up a little bit and can bring someone else into this journey with us and stuff. I’ve also learned that I’ve also learned that my friends, there are different things that they’re good at like, there’s different things like, certain friends are good for crying, together on the phone, certain people are really good about, let’s pick up and go away for a weekend, or there are certain friends who are really good cooks, who want to make a meal for you. There are just all kinds of different support. Together, all that support can be so helpful. I love my friends, but they’ve gone to just like a whole new level of being there for me and checking in on me. It’s just wonderful. for people who don’t have any sort of friends, or maybe they’re completely alone, I think that reaching out to some of the organizations they like, reaching out to us, I mean we’d love to send them a care package, check in on them occasionally any of that stuff. I think that there are people out there who want to help and want to be there for us, but it’s hard to see when there’s so much shit in our life. It’s just so hard to see it.   I’m so glad that you bring this up to go out and get connected with like Humor Beats Cancer, other organizations that you believe in, that makes you feel not alone. That’s one of the critical things about what can support us and help us and hearing other people’s stories. I think just the fact alone that other people are going through similar things, I really look at everything that you see from Humor Beats Cancer on your blog, or whether it’s the socials and these little beats, where people say some inappropriate things. People share that because it’s hilarious or it’s inappropriate. It’s what helps us to understand, it’s not just me who’s had this story, but it’s other people. I’ve seen that as well. That in itself is such a huge thing, isn’t it?   It is, it’s so funny, because you do think at least I thought, well, I’m the only one to experience this thing. Then all of a sudden, you’re like 12/15/20 people are like, my God, that same thing happened to me too, and stuff. It’s definitely like, we may start out with the humorous thing, but then like it has been turned serious where people are getting tips from each other over social media, and they’ve never met each other. There are so many people who, who celebrate people’s accomplishments, and when dealing with cancer, who they’ve never met in person, and they don’t know and so it’s just I think that’s the coolest thing. I when people bash social media, I always say, well there are positives in it, too. I think that this is a positive that people all over like you and I would never have connected. We were in completely different places. We’ve done that because of Humor Beats Cancer, and I think there’s so many other stories like that, where people may only know each other virtually, but they helped save someone from either living out the rest of their life in despair or just to get through this moment in their life. It just depends on the person and the type of cancer and what’s going on with them. I just think it’s amazing. I don’t know, what we would have done without social media during COVID. I don’t know what we would have done without social media during cancer and doing all these things. I just think it really brings people closer together when used right.   It’s so true. Thank you for that reminder, I remember when the whole COVID thing started, because you go through cancer, you’re used to this isolation thing. I was like I used to jump across the street when I was going through chemo, when they saw the person walking toward me, so I was isolated before it was Covid. We’re very used to this world anyway. Sometimes, that’s one of the few things that you can do is, is to contact someone online or on video, or somehow on socials where you can interact with them. You are probably sometimes you don’t feel safe interacting with people in real life.   I love when I see like conversations about, and it’s not like from medical opinions, it’s more like I’m dealing with, say, the side effects from this drug, what would you recommend, and then just see all these creative things people have done after trying things and this not working, and I’ll try this. Then you find like something so strange works. Then you try it and you’re like, my God, this helps me so much and stuff. I really think that that is just beautiful, you know?   A huge part of it is also is also learning to tell your story, because I think part of it is what can be really helpful is finding a way to share your story, whether that’s on social media, whether that’s doing some sort of a project I don’t know, writing a book, I know you’ve got your beautiful posts on your blog with people sharing their experiences. This is such a big deal for you like storytelling. What are some of the thoughts that you have, how do you tell your story? In a way, you’re going through cancer, you’ve been through it. Or you have a loved one who’s dealing with it? How do you how do you put it into words?   For me, it is using humor a lot of times, because I want people when I’m telling them to not be so turned off by me and the subject, that we never talk about it again. they start avoiding me. I always find that, I mean people, some people are like, my God, that’s a lot for Monday coffee conversation. I’m honest about it. I’m also like to put some humor in there too. that to take the tension out of the room. It is serious what we’re all going through, there’s no reason to make light of it, or to really make it seem like it’s not a big deal, because it is a big deal. I do try to if I’m writing it down, or if I’m telling someone, I tell the seriousness of it, but then I also share some of the funnier stuff, too. Like, there’s just weird things that happen to your body and to you. Depending on how close you are with the person, that’s the stuff I’ll share. That’s where I wanted mine to be different from other organizations, is that I didn’t want it to be just about the sad stories, I wanted it to be about what life is like for people truthfully, and like the funny things as well as like the, the things your kid says about you about you, it’s full, because you have cancer and stuff like that. That’s what makes us a little different is that I think that some organizations really like to focus in on let’s tell me your sad story. I don’t know if that’s as helpful as it seems, to cancer patients, because then you go deeper and deeper into that hole of depression, and you feel like that’s all you are, is cancer. Whereas, if you’re sharing it, and you’re sharing humorous stories, people can relate more, that helps spread the word a bit more about cancer and to talk about that everybody doesn’t die from cancer, and some people do go into remission, and some people do last a long time. I want people to get educated on cancer, who maybe don’t know, and they can do that through me. I think that’s a great idea. Yes, absolutely. It was a beautiful reminder that I realized why I’ve been turning some people off, that certain part of my cancer journey. Probably having too deep and meaningful conversations about it. Maybe talking about other things can be better, because it can be more healing. Sometimes like you say, I think it’s really important when we’re talking about the humorous side of cancer, not because it’s great, but because it’s finding this awkward way. It also gives us permission, I think, to also talk with people more openly about things that are not related to cancer. I think so. I do, I think it opens up. I feel like when we get cancer, this bubble comes up, and a lot of time comes around us. It separates us from rest of the world. I like to try to pop the bubble and say what, I’m still watching Bravo reality shows, I’m still eating way too much ice cream, I’m still doing all these other things, I’m still me, cancer is just one piece of me. It’s an important piece, because it can often be a life-or-death piece. It’s not all of me I still, I still enjoy going to concerts, I still enjoy junk food, I still enjoy work. I do think that sometimes we don’t often help our cause in a way because it’s like, we talk about it in such a negative way that people don’t think there’s any hope to you know living. I really think it’s about talking more about cancer in ways that are relatable to people, not just to make them feel comfortable, but for us to be brought back into society sometimes. To your point, though, about COVID, I think that that actually was strangely, just the conversations about COVID helped our cause, because people finally got what it was like to have to be stuck in at home and isolated from people like you described. They notice like they have to go the doctors a bunch of times, and you have to go because some people got COVID had to keep going to the doctor. I feel like that it really like showed a lot of people who have not had any exposure to illness, what it’s like for us, and I think that that is that is a that’s a positive side effect of COVID when there’s so many so many negative parts. I think that that’s how I look at cancer, there’s has to be some positives, something that’s going to help the next group of people going through cancer, is that something that we all can do, and I think that is talking about it more in a relatable way with others.   Exactly. there’s so much about it, when we when you talk about something that happens, you’re also in the process of redefining yourself redefining how you see the world. It changes your body, it changes the way that you feel it changes the way that you look at life, and the process of sharing your story, doing something that you might feel passionate about that somehow excites you, trying to make a difference in your own way, in whatever way that is. That helps us to redefine ourselves and get, I don’t want to say comfortable, but get okay with living in whatever your reality is. Ultimately, you can feel good about yourself.   I agree with you. There’s just so much to cancer, beyond the diagnosis and the treatment that I don’t think we talk about enough. I feel like whether we live or die, those of us who will get cancer will forever be changed. There are going to be things that about us that that’s different. There are going to be things that we appreciate differently and things in life that we think about more and stuff like that, and I think that that it can be a gift. I think for me I didn’t really get that I wasn’t giving back enough to the world in some way. I got cancer and then I was dealing with it, and I was like, my gosh like I was sick of myself. When you’re in cancer, it’s all about you all the time. Like it’s like and then you you’re done with the treatment, and then you’re like a poorly lit alone, and you’re like, now there’s nobody here at all. Nobody cares. I think that it really, it showed me that by doing these little things that I could still do have a meaningful place in this world. I think regardless of if I have cancer or not, so I think those that was important.   That’s beautiful. That’s so inspiring, because as you say, it finds you a place to give, to feel get a sense of belonging beyond yourself. I think that’s so vital, on our journeys to cancer to find that sense of something of belonging to something that is that you care about, and the way to make sense of life beyond cancer.   It’s really hard. All I think about is cancer. By doing Human Beats Cancer, it helps take take the focus off on me, and helps me focus on other people in a different way. Still related to what I’m going through, but like, I feel like people who get in volved with us and who share their thoughts and stories are really I see that in them too. I feel like they’re very joyful people, generally speaking, they don’t want to just sit and like stew in their cancer story. They want to really make the most of their life no matter how long it is, I feel like that’s another thing Cancer gives us, it reminds us that everybody’s going to pass away at some time. You don’t think about it if you’re healthy, you just assume you’re going to live forever. I think it’s we’re given the gift of like, a reminder that life is precious, and life is short. That we only have so many times to do good in the world or to or to love our loved ones. Now’s the time, and you don’t wait to say the things that you’ve been wanting to say to someone you care about do it now because you just don’t know, you don’t know what’s going to happen to anybody. That’s what I keep trying to remind myself too.   That’s a beautiful thing. Olivia, I want to thank you so much for being here so much for sharing this, and for what you do in the world, because I think it’s so vital. Thank you so much. Thanks for having me. I really appreciate it. It was it was a great conversation. thank you.     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Hello, my friend, and welcome to Cancer Can Give! in this special series of the Simplify Cancer Podcast, we share inspirational stories of people who went on a grueling journey through cancer and yet, they found their own way to live, grow and give in a way that helps others. Today, it is my absolute pleasure to be talking to Rod Ritchie who is a health activist and a beautiful soul who brings a unique voice in the world of cancer as health activist speaking for male breast cancer. Links Male Breast Cancer (malebc.org) Male Breast Cancer – awareness and beyond Video   Full Transcript Rod, I stumbled upon your manifesto on your website and the work that you’re doing. What really struck me is your dying for change, we’re dying for change and the urgency that you have in this manifesto, tell me, how did it come about?   When I was diagnosed in 2014, obviously, that’s a shock. You are pretty much concentrating on getting treatment, as you know very well for cancer. Then I suddenly started realizing when I am looking around websites, that it’s a sort of pretty pink disease, and how does it cater for men.  Obviously, I got to the conclusion that it wasn’t catering very well for men. I have to say, in the last eight years, there’s been a lot of changes. That manifesto, which, by the way, was written by me and the late Rob Fincher, who was stage four breast cancer patients from Wollongong.   That manifesto has made a difference. When I look at the list of quite a few points, probably half of them we’ve made progress on and things like the de-gendering websites, adding a bit of blue for the pink and sort of making it more inclusive, making the text more inclusive. If a guy gets over there on the site starting to hear stuff that doesn’t really apply to blokes, I don’t think that’s good. The stigma attached to this disease, for a man, I mean, you, you could probably talk about stigma as well with your particular cancer, testicular cancer, but for a man to have breast cancer, it seems gee, what’s wrong? Are you a bit effeminate or what’s the problem?   Absolutely. I couldn’t agree with you more that the stigma, these cancers, they go to the root of who we are as men. I think that’s the root of all cancers, they affect us at the at such a deep level that affects our body, it affects how we think about ourselves, it affects how we are around people. I’m just inspired by the bold vision that that you guys had around this manifesto, and to see that progress is being made around it. Let’s get back to your steroid because I really want to talk about that and your story with breast cancer. I mean, because we all kind of have this moment when we when you kind of find out that you have cancer. What was it like for you?   Pretty surreal but not unexpected. I had a lump behind my left nipple for a little while. I presented to the general practitioner, and we both agreed, maybe it was nothing. A month later was still not nothing. I came back and anyway, long story short, the third time I turned up, I said, I need a scan or some sort of and she said, but none of those times that you do a clinical examination and I just sort of wondered if I presented with breast problems as a woman, I think I probably would have been seen a bit earlier. That made the diagnosis at a little bit of a later stage than I would have liked. I had excellent treatment, just locally up here, and I couldn’t really complain about anything. I have to say, as a guy, there’s a lot of women out there as breast surgeons, oncologists, radiation oncologist, and we’re lucky in a way, as guy having this disease, we’re lucky that we can just slip into a system that’s really geared up maybe for women, but a lot of the treatments really are just as effective on guys.   That’s fantastic. Rod, I love how you talk about that you were even at those were very early stages you were the advocate for let’s get it checked out, let’s get it looked at. Sometimes, you’re going to have to put your hand up and kind of look after yourself, be your own champion, if you will. It’s such a tough time, because as you said, there is stigma. It’s like you described there is this radiation causes the different specialists. It’s kind of kind of like almost you have to learn this new language, isn’t it? It’s challenging time on so many different levels, and it just throws everything up in the air. Would you go in on your kind of journey through cancer? Was the time when you kind of felt like you almost wanted to give up because it was just getting too hard?   No, honestly, Joe, I didn’t ever feel like I wanted to give up. I felt like I really wanted to take the treatment on offer. It is quite invasive, and it’s quite lengthy. In my case, it was starting with surgery, because the chest, I started with chemo because the breast surgeon didn’t want to operate. The skin was inflamed, etc. That chemo over a few months is quite tiring. I read somewhere that you’re meant to keep active and keep doing things. That’s what I did, I took on a building project. Whereas the first day, I flopped into the lounge chair. After that, I thought, bugger this, I’m just going to keep going and I did, and I and I got through the chemo quite well. The surgery, of course, is a different matter, your cut, and there was quite extensive, including lymph nodes under the arm whole lymph nodes removed, and there’s a drain that you were. I thought that was perhaps the hardest part of the treatment. After that was radiation, which is 33 treatments every day, except the weekend. Bingo, you’re sort of done. Tip you out the door. That’s when it gets a bit like oh dear, I quite liked treatment because I felt quite secure of it. I think you got to get over that.   When you find yourself in this new reality of cancer, you can think that you go through this treatment and everything and sometimes we feel even perhaps even more lost when it’s done. All of a sudden you don’t know; you’re waiting for results. You don’t know how things might turn out. You don’t have that support. Tell me what kept you going in that time? What supported you?   I had good support from my partner. She was around when things needed to be done and changed. Obviously, that was a big thing. I’ve got three brothers with their own families, they were supportive. Two kids, my daughter and a son in their 40s, they were very supportive. I never felt unsupported. Of course, with social media and the internet, particularly, there’s some very good sites, and not just social media actually, Breastcancer.org, which is a big site. Again, it’s full of mostly women, but I’ve stuck around there for all the time and talked to other men. As soon as I realized that I was going to be I was pretty keen to get a bit trained up one, as a telephone counselor, two, helping in the infusion room at the local hospital. At the time, I was getting over treatment, if you like, I was also learning about learning some new skills. I had skills as an internet person, as a writer and a marketer. I thought, I’ll just switch over and I was sort of ready for a challenge. I sold my business, and I was thinking patient advocacy and I sort of thought that evolved into patient activism. I like that term as well. I mean, it’s a next step. I’ve never stopped all that time. I’m still going.   I’m so inspired to hear that story that you volunteered; you’re out there helping people. You decided, I’m just going to go into this this world of advocacy and activism. Rod, what is what is the distinction between patient advocacy and patient activism?   Patient advocacy, I think is working to promote aspects of the disease, in my case with the men who have it, and helping them go through the same things that I went through. You get a bit of knowledge. They say, a bit of a bit of knowledge is not bad, too much knowledge might not be good, but you really do learn a lot. A lot of the time, it’s listening, listening, what’s the problem? It’s not trying to put anything on anybody and nobody that contacted me, my number was out there to be contacted. It’s always the person that you’re working with contacts you, you’re not chasing anybody. You’re ready to terminate the conversation whenever you feel it’s getting too tough for them. Advocates, they sort of prolong and do or do the hard work. Activists, I think have sort of gone a stage further and like the manifesto that’s an activist thing. Also, you’re not afraid to take the debate up to the medical establishment, pharmacological people. You reach the stage, I think the advocacy might last for a couple of years, and before the activism takes over. I have to say that you don’t feel comfortable until you really know your disease, you really know what you’re dealing with, and you really know what’s wrong with the way that it’s being handled.   Exactly. It’s going to sounds like it’s almost challenging the status quo, right? Like, there’s this established view of the world and you kind of painting a vision of what’s possible, right?   That’s it.   That’s fantastic. Good on you for doing that, because that’s really, in my mind, is that the way of progress. You have to be able to challenge the existing view. That comes from put putting out bold visions of how things might be, and it comes from real people going through this experience. Like yourself going, we could do better, right?   We could. I also think it’s not a matter of going into battle with the medical profession, they’re very busy people, no more so than the last couple of years. You do really understand their point of view, you’re sitting in an appointment, and they’re listening to you, but there’s sort of also thinking perhaps about the next patient or about an operation they have to do. I think, by going to an appointment well researched and well versed in all the questions that you might want to ask, you really do have to ask questions, because these people you don’t see very often. I found that the really good doctors just loved it, that someone was coming in and not keeping an eye on them, but actually making sure that the treatment they were giving you was effective or there was a reason for it. I have a great relationship with all my medical people, and I think that was because I was a bit curious and a bit out there. I wasn’t all that fragile, pretty quickly became resilient. I think it’s resilience that gets you through all this. If you’ve got that nature, or if you’re lucky enough to be able to handle it all then yes, that’s what you should do.   Absolutely. To me, those two things are connected, Rod, like being able to speak up and being more resilient. Sometimes we want to be able to bring out our concerns, to bring out our worries to bring out questions. When you’re working with it a medical specialist or medical team, they don’t really know you, they don’t really know what’s important for you and your way of life. You kind of got to speak up for yourself. I feel that when you do that, when you ask questions, when you talk to people who’ve been going through the same experience, when you kind of have an understanding of what is it that you want, or at least what’s important for you. All of a sudden, you become more resilient, because all of a sudden, this experience starts to feel like you’re a little bit more in control, right? Like, all of this stuff you felt you feel, sometimes it’s kind of goes over your head a little bit. When you start to ask questions, you start to feel more in charge. Do you think so?   I do think so. You hit the nail on the head there, Joe, because, as I said, I think medical people get it, where you’re coming from. They need to have respect for patients, and we need to have respect for the professions, but it’s a two-way street. I think it’s amazing. There are so many good people out there. I just, I just feel very, very comfortable talking with them, going through treatments and, and learning that it’s not all that serious. You can maybe have a laugh here and there. It’s also, I think, building up your resilience. It’s sort of like a cumulative thing. I felt like I could probably stop a bullet right now.   Yes, bulletproof Rod. Absolutely. You’ve seen many medical specialists that you’ve interacted with, both as a patient, but also as an advocate, and as an activist, but you also have been interacting quite a lot in with the people who’ve been through cancer with caregivers. You’ve seen men who are going through breast cancer, people going through different cancers, different situations, different walks of life, different stages, different phases. When you look at the journey of when that we go through cancer, both from diagnosis to potentially survivorship, hopefully, what is it that you feel that we share on that journey? What stands out for you?   We share a lot. I was lucky enough to be given an editor job for one of the male breast cancer charities. They’d send me the men stories that they posted on their website, and I probably edited over 200 of these stories. Every one of them is different. For everyone that cruises through it, there’s people that are struggling. Most discomforting of all, for every early-stage patient, there’s a couple of late-stage patients and getting diagnosed with cancer at stage four right from the beginning, it’s a terrible blow to anybody, any gender, if you like. It’s from those people that I think I learned the most. They’re quite amazing. Rob, who did the manifesto with me was one of those people and he had a great spirit and never stopped helping people. I think right at the end, we just sort of said to each other, and I saw him in hospital a couple of days before he died, the hashtag is fuck cancer.   Yes, exactly. Now your kind of carrying the torch as well in some ways. It sounds like you and your friend, you were we’re doing this together.   Yes. We carried the torch. Life goes on. In many ways, we all we all have to face a lot of different problems too.   Absolutely. You’ve gone through such a, such an incredible journey with your advocacy and your activist work and the support that you’re doing for folks with male breast cancer, the global alliance. I know that you’re doing the male breast cancer live newsletter that you’re involved in. You’ve got your own fantastic website which we’ll talk about as well. You work with different groups as well both out here in Australia, but also, across the world and in United States as well. What is it that kind of spurs you on? What it is that helps you to keep going to have the belief and inspiration to go along?   It’s because I’m working with good people, I think you have to keep up. People in this space and I’m sure a lot of them are generally very well intentioned. There’s no BS, spade is called a spade not an implement with which to dig a hole. That’s an openness which I quite like, I really do like, and I don’t need anything else I don’t really need anything as far as inspiration goes, I just get up and see what’s on the computer every morning, no doubt, like you do.   Exactly. It’s such a beautiful thing, Rod, isn’t it? I’m so glad you brought this up. I think when sometimes you find yourself feeling in this new world, I have to go into cancer, everything’s changed. Finding something where you can be passionate about, something that you can throw yourself into is such a rewarding thing. I’m so glad that you brought up the fact that it’s, you just meet great people who get it, and you can spend time interacting with them. Right?   It’s called cancer land and we are living in different rooms, but it’s surprising, on Twitter, which I do quite a lot of a lot on. It’s not just breast cancer. There’s every cancer there you can name, and there’s a similarity there. They all have their different worries. As I said, for the people going through treatment for an advanced stage, it’s completely different. The odds are so high. I sometimes look and I think we’re very fortunate in the medical era that we’re in, fantastic treatments, we’re really fortunate. At the same time, especially in the chemo drugs are heavy going and the side effects are huge. I sometimes hear from people saying, no, I can’t take this anymore. I want quality of life over quantity of life. You often think, I wonder how I’d feel about this, I’m still waiting to find that out because I’m still in the quantity section. I think I think it’s very difficult for so many people and not so much for me, that’s why I’m still bouncing around helping.   That’s absolutely right. I’m glad that you brought up the fact that it is for many of us, it’s a struggle to not only deal with treatment, but to deal with side effects and aftereffects. I guess sometimes we don’t really think about that’s, that’s part of life. Also that’s why it is important to get involved in something that you’re passionate about, to kind of throw yourself into whether that’s advocacy, or whether that’s activism, or whether it’s something that’s totally different that kind of lights you up, that makes you excited about life and what you live in, in whatever way that is for you. I want to ask you, if you’re someone who’s been through cancer, or maybe perhaps living with cancer, and you feel like you want to do something, you want to make a difference and, in some way, maybe you’re not sure where to begin or like what to do. How do you think around that?   I think I think it’s most important to really get across your topic. It’s not, it’s not a matter of going out there half-baked and never giving medical advice, because I’m not a doctor. I only really just prefer to listen to people and to try and help them along, get through what they’re having to cope with. I think there’s just that feeling that if you’re making someone feel better, I always think it’s the sort of the little secret for these people that are patient advocates is that it makes you feel better and nothing wrong with that.   Absolutely. That’s the that’s one of the best things.  If I talk about something like that, like doing my podcast or my books or coaching, whatever, I feel like sometimes, you know that I feel almost guilty that I get so much out of it. It shouldn’t be like this. If you’re doing something that that helps others, but if it also helps you, I mean, that’s kind of the best of both worlds.   That’s groovy. That’s what’s called a win/win.   Yes, exactly. That’s what we’re looking for in this in this brave new world. I also think it’s so important or odd, and to find your like a reason why, to find the reason why something doing something is important for you. We all have our own reasons. We’re all different individuals. Our reasons might be different and distinct. I think really connecting with what is important to you in your life right now. Who do you want to help? And why? Whether that’s whether that’s advocating around the type of cancer that perhaps you will live to live through, or maybe it’s doing something in your community, or maybe it’s renovating your kitchen, whatever that is, right? It’s so vital to find something that a reason why you believe it’s something that you want to get behind, right?   I’ve got a personal reason, is that my mother died young from breast cancer. I thought, as I’m going through post treatment era, and I look back, and I think I see particularly a lot of younger women who I’m really keen to try and support as well. I think back then, in my mom’s day, that was 1962, there was no chemo. Patients that went to stage four, just all died pretty quickly. I think, as I said, before, we have medical science, I think that’s reassuring. It’s not a hopeless task that it used to be. I feel motivated for that reason. I think there’s no other reason, I guess, apart from the fact that it sorts of snowballs. You help somebody and then they hear about you and say you help them. For instance, there’s a guy in the United States who loves to have a Skype every few weeks. He’s been through and he’s currently stage four, but he’s doing very well. It’s just become a personal friendship. I think you make a lot of personal friendships. It’s quite a strange situation. In fact, I’ve written an article on social media, friends, and what you do when, when a person dies that you’ve never met. I think that’s interesting sort of concept as well. Every so often, somebody just passes. I’ve had a few of those recently. I think that’s, that’s something that you can’t grow on. It’s something that also keeps you going. I think it’s a real incentive to, to think that maybe there’s some people that haven’t got a lot of time and whatever you can do, it’s going to be good.   Exactly. It also helps us to reconnect with our own experience. I feel that in some ways, I don’t want to close the door on the things that I’ve experienced, because now it’s such and it’s such a huge part of who I am today. For better or worse. It’s made me a different person. I’m quite happy being who I am today as, and I can’t imagine myself being different from the person that was a few years ago.   How do you think it’s changed you, Joe?   The biggest change, Rod, for me is that it’s made me feel so much more in the present. I feel I’m not spending a lot of time thinking about the future or worrying about the future. I don’t spend too much time dwelling on the past. I’m so passionate about living today, enjoying the moment whether that’s with my family, whether it’s in my work, and I think reconnecting with that that being present in the moment is such a vital thing. I don’t think it’s some woo-woo new-age thing, I think is a very real and it’s really helps me to get going. What about you, Rod? What is something that for you feels changed probably the most for you.   You certainly gain a lot of knowledge in a field you’d probably never would have gotten into. I think if you’ve got certain skills, you can transfer them to this field. Quite often there’s a medical profession out there that really wants to engage with patients. I find them on Twitter, which I have like 2500 followers, and I have one rainy day look throughout this workout who are these people can’t make that that half of them are actually medical professionals. That means that you can put the patient’s perspective to a lot of people that you would never ever in your wildest dreams would have reached. That’s what makes it rewarding. I think it’s not just the fact that you can go and pack something where you can write something, you can edit something, you can do a podcast, it’s that you actually can engage. That’s what keeps you going because you feel you’re getting somewhere.   Tell me about your experience on social media, on Twitter, of making an impact online, how was that working out for you?   It’s working out very well. I’ve followed a couple of Facebook groups, as I’ve got prostate cancer as well as breast cancer. There are men in the prostate group, and there’s not many men in the breast cancer groups, but I keep the breast cancer groups up to speed with what’s how a man might feel. With the prostate cancer one is just guys chatting. Interestingly, on the prostate cancer, Facebook pages, half of the people that are on it, in here are actually women, wives, partners, girlfriends, whatever. Whereas the breast cancer one, you have to you might go a week before you see a man wonder on there and men, you probably agree with me that men aren’t really great at presenting with a disease, they’ll put it off. I’m sure so many men that hadn’t turned up for their seminar examinations or have been embarrassed in your case to say I’ve got a problem with my testicle. It’s a bit the same with men and breasts. They don’t think they’ve even got breasts. a lot of the time, they’re just as I said before turning up late for a diagnosis.   It’s so true. I have to say that I’ve mirrored that experience, yes, across on everything that I’m doing. If we’re talking about testicular cancer, and prostate cancer is there are so many caregivers that kind of show up and listening that I didn’t expect that. It’s interesting that you’re seeing on the breast cancer side, and I also couldn’t agree with you more around men and how we deal with cancer. The first time I was invited to speak at like a prostate cancer support group. I think I was there for about just over an hour. I was going to speak in towards the end. It was fascinating, the guys talked about everything, they talked about the Christmas, footy. They talk about this, talked about that. I’m sitting there going, did I go to the right place. Is anybody going to mention cancer. It was one of those surreal things where it’s one of those things that is difficult to bring up, even though this was a safe space, even though that was a prostate cancer support group, like you’re not a supermarket. It’s fascinating how we work right?   Maybe that sort of talk works for them.  I’d love to hear say how those meetings go, do they eventually talk about testicular cancer are about what’s worrying them or about treatments? I guess they do, but I guess they’re trying to try to make small talk.   I’m always the unknown person. I say stuff and bring it up. I don’t know, maybe it’s just the infuriating nature of my personality. I feel it’s really important to bring it up because I know that sometimes it’s difficult to talk about and sometimes is it is painful to bring up these things. I remember like in that particular moment, when I brought it up like people started sharing some really difficult moments that they’ve had the difficult times that they’ve experienced but I really believe and wrote that. My personal belief is when we go through difficult times. we things that affect us, I believe that bringing those fears and those worries out into the open, I believe that’s when they lose the grip on you.   How far are they prepared to go? This is the question because I think about this a lot. How much information are you getting about men’s problems? Let’s talk about men. How do you think you can help them when you maybe got limited information? Or do you look for signs that they’re struggling in any particular department, and I say, sexual function or something like that? I wonder how you handle that?   I personally, don’t try to help because I certainly don’t give any medical advice. I do think it’s important to share the stories with other people and bring out your stories. I think, first of all, it helps us to reconnect with our own experience. I think when it’s very difficult. My belief, I think it’s true for not just men, but for all of us as people, I think it’s very difficult to go out and seek support, whether that’s support of medical specialists, whether that’s support of a clinical psychologist, whether that’s even talking to your partner or friend, when they haven’t been able to make sense of the situation yourself. If you haven’t been able to get clear on what’s bothering you, and how you know how it’s affecting your life, we have to be able to make sense of ourselves first so that then we can go and seek that support. I really look at that as a vital step to reconnecting with your own experience. It then opens you up to get help.   That’s really well put.   Thanks, Rod, I really appreciate that. You strike me as a person that’s just living life to the fullest, despite your intense experience with cancer on two different fronts, and all the amazing work that you’re doing, what is it that you feel grateful for in your life today?   I always feel grateful that your kids and their kids are okay. Your relatives and friends are okay. It’s a bit of a tightrope, exercise isn’t attended, and you know that some days, it’s not going to be okay. I think you just keep plodding along. I think, personally, my kids think my life’s boring. We live in the country here, and we just grow vegetables and wanting to do more and all that, and I don’t try and over explain what I’m doing to them. I know it’s okay, they just have to trust me that what I’m doing is okay. They’re probably glad that they don’t have to come up here and change my nappy or something.   Absolutely. Tell them like we’ve someone wanted to find out more about male breast cancer, the work that you’re doing on Twitter, on your website, what would they do if they wanted to find out more about your world?   I think they they’d obviously go straight to the internet to research, to see what Dr. Google says. I think people say to me, I don’t tell people to go on the internet. the internet’s changed a lot. Any search term you put in for medical condition these days has gotten really good results from top institutions, from groups that are very much have a good reputation. I think there’s a lot they can get from the internet. I would send them to my website malebc.org, which is pretty simple URL malebc.org. There’s a lot of information there. There’s and it’s information from medical specialists. It’s not just chit chat. There are so many aspects, I think with all with all cancers, there’s different things that worry different people and I tried to sort of cover that there. They need to find I think they need to talk to other people with their disease and social media is perfect for that. There are Facebook groups, which we talked about on Twitter, which is actually helping people and a lot of medical information is posted there the latest studies, you might have missed something. I get a lot of feeds in on my email, but I like to keep up with what’s happening there. People use Instagram, which is more visual. I’m not a great fan on that. I think find your niche learn little about your disease. Just put your toe in the water. Normally the people are wanting to find out more and want to make more people end up doing that. They are sort of self-selective.   Fantastic. Thank you so much for being here. Thank you for what you do the world.   Thank you, Joe. I’m really proud to have been interviewed by you because I can see you. You’re claiming your space out there. It’s just it does rely on people like us to go out and help people know that there’s others have been through the same thing. I really loved your work, as well.   Thanks so much for your time.     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Hello, my friend, and welcome to Cancer Can Give! in this special series of the Simplify Cancer Podcast, we share inspirational stories of people who went on a grueling journey through cancer and yet, they found their own way to live, grow and give in a way that helps others. Today, it is my absolute pleasure to be talking to Heather Hawkins, ovarian cancer survivor, she is a health advocate, the most adventurous spirit I know, a beautiful person doing good out in the world that advocated for health, for hope, and living beyond your comfort zone! In this conversation, we talk about hope, choosing adventurous life after cancer and making a positive difference out in the world. Links Heather Hawkins: Adventurous Spirit on Facebook Heather Hawkins: Adventurous Spirit on Instagram Adventurous Spirit by Heather Hawkins on Audible Adventurous Spirit by Heather Hawkins on Amazon Video Full Transcript Heather, I have a bit of a thing for a first sentence in the book. In your book, the first sentence is: Sometimes our paths in life take us in completely unexpected directions. It’s certainly true, right?   It is.   For yourself as well, and I think when cancer makes an entrance into your life, and for you Heather, a decade ago, your life really took this really unexpected turn, right? Tell us how did all of that play out?   Yes, my goodness, it was 2006, December 2006. I was a busy working mom, I had a 14-year-old daughter and 11-year-old son, and life just is so full of school after school activities, dropping kids off, working hard at the office. I did start to notice this fatigue creeping in and then also a little bit of abdominal bloating, and I was 41 at that stage. I remember thinking, this is probably either menopause creeping in, or I’m overdoing things. Or maybe it’s middle age has spread that I need to get a little bit more fit, a bit more active. Then throughout that Christmas time of December 2006, and then going into 2007, there was some more symptoms that then started to occur. I was off to the toilet more often than not with frequency with urination. I’d eat small amounts and start to feel really full quickly. My abdominal bloating just continued to grow. It also continued — for every woman at that particular time of month, you do get bloating, tiredness, but when it persisted between periods, that’s when that intuition kicks in. You think, this is not right. This is not normally how my body operates. I thought, I need to go and have a chat with my GP. I’m so glad we have a great relationship with our GP, that I could feel confident to go and talk with him. I didn’t feel embarrassed. I knew that he would take me seriously just talking about a raft of very general symptoms. Then he would take me seriously and also seek to find answers and have that investigated. That was really the beginning of my fear that this massive shift in my life going from a completely normal world, to suddenly hearing those two words in the same sentence as my name those two words of ovarian cancer.   So many interesting things you said that I want to pick up on, you talked about watching out and listening to your body, things that you knew what not right, and you picked up on those patterns. Then it is about having that courage to speak to your treating doctor, and to bring those things up and to get those things looked into. It’s so vital, isn’t it?   It certainly is and it’s about understanding that this is not how my body normally operates and to sit down with your doctor and to go through all those things that you’re concerned about. I found it really helpful. I wrote out a list so I could go in there. You’re so emotional at that time. If you can refer back to your list, you’re not missing out on things that perhaps are going to be really important with helpful with your diagnosis. Talking that through, he said, “Yes, that does sound serious, I’m going to send you straight off to have a CT scan.” I was fortunate enough to get into the radiology clinic that afternoon and had that CT scan. I found that really quite confronting that I was taking off my normal clothes, and putting on that white hospital gown, suddenly transforming from this normal life into being vulnerable and raw, and just thinking, wow, I did not expect to be here. Just so anxious, what that scan was going to reveal. A massive shift. Then getting the results that afternoon back in the doctor surgery. Hearing him say those words, then thinking, wow, where does this lead to? What is the prognosis here? How are we going to manage this? With all those questions, as just racing up inside, don’t they?   Absolutely, Heather. I was so also touched by what you brought up as this transition into a different life. You’re exactly right, you put on this gown. It’s like your pathway into a totally different universe where all of a sudden you have to learn this new language and everything that you know changes. To touch on the fact that you said, you went in prepared you made the list of questions because you knew that it’s a crazy time, and you’re likely to get emotional. I think that’s such a great tip as right for whenever you go into the unknown, and whether that’s being of course, around cancer, just health in general is to go in with the list of questions so that you don’t forget in the heat of a moment, which is so easy to do, right?   It is, it’s very easy to do and even also to take someone with you, your loved one or a friend, and that they’re able to ask those questions, perhaps that you forget, or and maybe if you get really emotional and find it very difficult to ask those questions, they can step in and help as well. It is, there’s just so much to sift through, to digest isn’t there. I find perhaps writing notes from that consultation as well. I know with the perhaps my first meeting that I had with my gynecological surgeon that I was referred to after that initial consultation with my GP, you come away and your head is spinning because you’re thinking okay, this now means surgery. How extensive would that surgery be? Yes. What day are we booked in? Being able to just write down all those things. I love having like a plan in place when, when things are uncertain. You’re not quite sure how they’re going to play out. If you know that you’ve got a plan in place a structure that just helps you cope emotionally so much better, doesn’t it?   Exactly, because you got something to fall back on. It’s so true what you say about not forgetting the little things, because I know, I remember speaking to my urologist. We were talking just about the same, the very same thing about forgetting or just missing a little detail. He told me about a study which I don’t have the details for, but apparently there were studies done around and I believe it’s not to be quoted here, but it was suddenly like that we forget about 80% of what we hear on that first visit to specialists treating you for cancer, because you’re just in that you’re frazzled and you’re in that state of mind. It’s so vital. As you say, take someone with you to take notes so that you have something to fall back on because it’s just such a difficult time, isn’t it?   It really is because you’re you’ve just been taken off in your day-to-day pathway into some new pathway and that it isn’t a very confronting time and I think if you can surround yourself with that support some real clarity. I know our when our imagination gets the better of us that’s when we become so anxious, don’t we and overthink things and think worst case scenario at times. If we’re able to get that clear explanation and that knowledge and understanding of what the treatment is going to be, what surgery will entail that will help us cope so much better. Also, you don’t feel alone do you if you’ve got somebody with you in those consultations and also in the lead up to surgery. I just remember being so grateful that my family came in on that morning of surgery to have them there, that I could give them get to that last little hug and then be wheeled off to surgery. That just meant so much. It gave me a lot of strength to face that because that is a big day, isn’t it? When you you’re heading off to surgery, you’re relieved that the day is here, aren’t you, but you’re also just quite worried about what the surgery is going to reveal. I remember feeling very torn between those two things.   Absolutely. It’s so beautifully put in the sense that you want that little bit of normality. It’s that waiting. I find one of the most challenging things for me was that constant waiting. You’re waiting to be called up to the oncologist, or you’re waiting to go up to your specialist, so you’re in between things. That’s when you want someone with you, so you can talk about something other than cancer. You can talk about your just normal, everyday life. Heather, when it comes to those difficult moments, because we all have them, right? I want to check in with you, when you look at your cancer journey, you think back on that, what was the most difficult or one of the most difficult moments for you?   I probably have about four difficult moments hearing. Hearing that initial diagnosis that is tough stuff, digesting that. The second hardest thing I think was telling my parents and also telling our children that evening. Trying to find the right words to say, trying to keep it together and not cry too much knowing that that would really upset my parents and my children. Also wanting to share in very practical terms about my diagnosis and what the plan was so that they could hold some positive things to take away from that phone call or that that sit-down time with the family. The other time was as I was recovering, and I would be going for my checkups quite regularly, going into the waiting room and sitting with other women and chatting with them and hearing their stories. Most of them had ovarian cancer as well. It would really affect me deeply because mine was found stage one, I was just incredibly fortunate that it was found in time before it had spread. Surgery was 100% successful. A lot of these other women, sadly, were undergoing several rounds of chemotherapy, they were going back for more surgery, their prognosis was not looking great. I would come away to so devastated, really upset, trying to battle with survivor guilt. Thinking what else can I do? I felt quite helpless. That’s certainly has been a very big motivating factor in what I do as an advocate these days. That that was quite confronting. I do find that each year now I when I go back and I have my results, read out to me, you still find yourself transported back to that very first time, don’t you you’re sitting on the edge of your seat, just waiting to hear the news and hoping that it is all going to be good still. For me, I don’t want to be transported back there. I want to keep growing and being well and healthy and trusting my body and moving forward. I mean, I accept if it does return, then I will face that, but it is still a confronting thought. Those are probably about three or four things that I found the most difficult throughout that journey.   Thank you for sharing that. For me, I also find that I have a slightly different perspective on that. I do feel in some weird way, and I don’t want that does come off strange, but I do feel that reconnecting with those early days of being diagnosed. For me also the time when I knew that my cancers’ come back for me in a in a strange way. It’s important reminder of what life is today and I’m not talking about having a perfect life or anything like that. I know that just how close we come whatever stage or phase you’re at, but we’ve lived it we stood or some of us stand on the edge and you looking down into the abyss and one of the things that you realize that for me I think it’s the it’s that we only have this moment today to live our life to be at our best. Give what it is they can we can to move forward and that’s one well the reason why I really asked you about the most difficult moments and thank you for sharing that isn’t to dwell on it and, but I feel like also those times, they often push us towards an important change in our lives, right? A change where you, you go towards exploring things that you might not have done before. What was that like for you, because you had those changes that made you made you realize certain things about yourself and where you wanted to go?   Yes, because I’ve come to realize that often those low points in our lives are our turning points. That they can be where a big shift occurs, whether it’s in our way of thinking, perhaps it’s our understanding of life, or our goals and dreams, perhaps we need to get a bit fitter, which was definitely the case for me. One of the biggest shifts for me was being grateful. I felt that it was my second chance at life. I was going to make the most of it. My oncologist said to me, however, what will one of the things that will really help you with your recovery is perhaps to do a little bit of exercise. I thought, okay, I can do that. I can now go for gentle walks and things. Then I decided to sign up and become a volunteer surf lifesaver, my family were really involved. I did have a fear of swimming out beyond the waves and realizing that’s what I had to do if I was to pass successfully. Suddenly, I had those experiences of being out beyond my comfort zone, but finding that I was okay, that I could cope, okay, and learning to trust my body and get active and fit and the joy that that brought and sharing it with other people as well. That really opened up my eyes to physicality again. That gave me the confidence to sign up for that four-kilometer Fun Run. That has just set me off on this whole new world.   That’s beautiful. That’s taken you to beautiful places doing this incredible what ultra-marathons in this beautiful and remote parts of the world. How did you get there? You had the fun run? Then how did you transition to towards the north poll?   It’s a wonderful journey, because I thought 4k Oh my goodness, how do you run 4k that is that’s a long way. I had two and a half weeks to train, and I roped in my two children to run at the local park didn’t even own proper running gear. I just had an old pair of runners and my gardening shorts to put on. Like everything in life, if you start, you make that decision, and you put yourself out there, and I had a go at running four Ks in one go. I wasn’t very successful that afternoon at the park. Pretty overwhelmed. I made a good excuse as soon as I saw a water bubble or to stop and drink. I went back to the park that next day and the next day. When that four-kilometer race turned up on that Mother’s Day, I got out there and I ran, and I loved it. From there I signed up for there’s a fantastic event called the city to serve, which is a 14-kilometer run. That was in August, which was about three months after that 4k run. Then from there, I signed up for a half marathon. It’s like these steps that I’m taking you know to get sign up to an event that slightly longer than that will give me time to train up so that I can stand on that start line feeling fairly confident and not too nervous about taking that distance on. Then I ran a marathon the next year that was in 2013. It was actually at the start of the Melbourne marathon. I was catching up with a friend in 2014. He just happened to mention about marathons run on ice and he said if you’ve heard about these, they are so crazy, and you reckon about doing those and so I thought I’m going to look that up. I spent the whole Melbourne marathon running along thinking about ice and penguins and running 42ks and how exciting that would be. Anyway, that was the one in Antarctica which wasn’t available. I found out about the North Pole marathon which was being run in April 2015. I was turning 50 at that stage and it was also our 25th wedding anniversary, and we decided that we would go to Paris we had always wanted to go to Paris to celebrate so it all tied in perfectly. We’d be over in Europe we could catch the plane up to Svalbard and meet the other race competitors, all 44 of us. Then from there on rather very old Antonov aircrafts to fly up to the ice floe at the geographic North Pole. Every year there is a temporary research expedition based set up, and it lasts for six weeks. People arrive at the pole to go to trek to run to research. There we all were 44 competitors from all over the world, all completely decked out in our thermal year on our running shoes, and ready to run 12 laps around this research base. That was a total of 42Ks. It started out, it was a quiet, quite mild conditions minus 26. Clear skies, the sun was trekking around the horizon as it does at that time of year, which is just so beautiful to watch. There are strategically placed snipers just in case a polar bear wanders across the course that they could definitely encourages you to run fast. You set off the start again, guys, and away you go. I just remember thinking, wow, my goodness, I’ve just turned 50. Here I am, I’m having an adventure, and I’m going to celebrate life. Each lap I had dedicated to, to somebody in my life, whether it was other women with ovarian cancer to my family, to different people. That gave me just such wonderful inspiration and courage to keep going and the conditions changed. It dropped to minus 41, the wind picked up, it was bitterly cold. I persevered. I kept going. I felt strong. I all those things. I think you learn from going through an experience like having cancer, you build that courage and that resilience up, and you keep on going. It was fantastic. It took me a long time to run a lot more than a normal marathon. I did it in seven hours, 53 minutes and crossed the finish line in first place female, which was a wonderful surprise and a great celebration.   That’s so powerful. I love hearing that and I know this was obviously some time ago, they’ve done so many wonderful things. Congrats to doing that and getting the courage and making the decision to do that. I think you’ll find it’s so inspiring is that idea of taking the first step, because what I’m hearing you say is, it’s making a decision to try something out. It started with that early dam just wanted to get that first. That first round was I think it was fought for kilometers, starting with one thing and then going and building onto it and then seeing where life takes you, isn’t it?   It is, this Is it because in the process you grow and I did hear someone wants make a quote that there’s no such thing as failure, but it’s learning and, and what may be a difficult experience that you go through and perhaps you’re doubting yourself and you maybe you think well I haven’t done a very good job or I’m not up to scratch, I don’t measure up. No, put those doubts aside and give something a go and then you can adapt, if that doesn’t work out or if you don’t feel great, then adapt and you’ve learned through that situation. You can always be moving forward and learning and feel that you you’re on a journey throughout life that you’re not just feeling that you’re staying in the one place and that you’re just embracing the things that that that happen and then just wanting to give back and make a difference in this world and that’s another thing that I love with my races that they’re a fantastic vehicle not only to raise awareness, but funds to help with cancer research and Cancer Support Services. That for me has just been this beautiful way of giving back and a new way of finding fulfillment in life. All that’s sort of unfolded over these last few years. That really means a lot to me.   That is so beautiful. I love hearing that and your incredible work you’re done and several funds as a health advocate. Tell me what’s inspired you to take that first step. How did it come about and, and also how did it feel to you?   I think I’ve always grown up, taking on what a lot of my parents’ qualities about giving back and being part of the community and carried those through. I think as I was recovering from Cancer and meeting those other women think and thinking, you know what, what difference can I make. Then when I started running, I thought this is this is a really great platform to be able to raise awareness about the signs and symptoms, so that men and women so that they can learn about those signs and symptoms about ovarian cancer. Also, what’s the support services that there are available that you’re not alone and Ovarian Cancer Australia are fantastic with a lot of the resources, they have their support nurses, their resilience kit, which is a really comprehensive, informative kit that they post out to anyone who needs a kit like that, so that they can learn really great information about their condition. There’s a fantastic program called survivors teaching students where we actually are talking about our personal journey through a Varian cancer and talking to nurses and medical students. For them to hear about this diagnosis from a living breathing person as opposed to a textbook scenario. It’s really quite profound. It’s a very emotional experience. It’s a way that we can feel that we’re making a difference. That for future patients who are diagnosed, that perhaps will make that diagnosis a lot easier for them that they can be diagnosed earlier, and really help with their care as well. It’s just finding those ways that I can give back is there, that main driver, and just you’re stepping out there and giving things a go, that’s how I just loved to tie in all those different things. Also, within my book as they’re talking quite openly about my cancer experience, so that that can be a terrific tool as well.   I love hearing that, because you’re such a given person even remember, I was I was just struck with the beginning of our conversation, because we did chat on the phone the other day, I remember like we were talking about what is the day’s going to look like and you said, I’m going to give a friend a lift for chemo, and I was really touched by that, because you’re just this shining example of giving back in whatever way it is that you can, which I think we all can do. It’s also not only about giving back in the sense that making a huge difference. By the way, I really love hearing about your survivors’ teaching students because it really transcends that learning experience, because we really are a team and we with our treating specialists, and we all work together. When they get to hear about lived experience, and not only here, but become immersed in what that’s like is you have a beautiful way of talking about your experience in your book, and in obviously, just sharing that out loud. I think it’s so vital to connect for our nurses, for our doctors, for the surgeon for oncologist to really understand and what it feels like and what are the challenges that are facing you as a patient? What sort of things? How does your life transform and the challenges you might be facing as a survivor or a person living with cancer, because all of that is a completely different layer of what you can do. You also touched on how it makes you feel that you are given back. Can you let’s dive into that a little bit. Giving back is vital, but I think what is often underrepresented perhaps is how it makes you feel like as a person who is doing something positive out in the world in whatever way that is for you. You’re just doing these amazing things. Other people just have different ways and we’re all sinners want to find that and bring that out. One of the people and I’m not ashamed to say that I think it’s transformative for you because you’re doing something that makes you feel like you belong to something greater. Talk about that. What’s it like for you and your world and how it makes you feel.   I do I feel so much more connected by putting myself out there and it can be on that one-to-one level, as you were saying, I went to pick up my friend from chemo and I always make sure that I’m available on a Monday afternoon so that I can be there and that we can go for a walk and have a coffee and talk about completely normal things. being there as a support and I get so much back from that as well that I feel that I’m helping her through this really tough time. It’s also if you’re feeling that you’re able to change the landscape and change that conversation that’s happening and help with the education of younger women. I’m also part of a couple of Facebook groups so that we’re able to share amongst ourselves just so openly. It’s that sense of never being alone, that no matter what we’re going through, that we can connect with each other, that someone will always be there to support, whether it’s a little word or a very long conversation, or many long conversations that go on. I think it’s so important for us to all play a role and see what we can do, like take a step back going, Okay, what, what is the thing that I can do to help bring change here. if we can come up with ideas and step out there and make it make a difference. Then what we get back is just so amazing, isn’t it? It just, it’s interesting, because we don’t go in wanting to think what I can get out of it. Boy, you get so much fulfillment and purpose, like it’s brought so much purpose into my life, being able to not only be an advocate, but to be out there perhaps different speaking engagements, raising, raising that awareness, knowing that I can keep being a voice that I can speak for those women who have sadly passed away from ovarian cancer, that I can be their voice to continue on and, and make that difference in that space. It’s just so many things that are that are wrapped up within that motivation, isn’t there? It definitely keeps me going. When I’m doing events, in the Sahara Desert, I was running the marathon (inaudible 31:41), which is a long-distance race. It’s 250 kilometers in seven days out this desert. There are times you can imagine with those types of races, not everything goes to plan. there are moments where you just think, my blisters, or I’m just feeling so hot and tired, I just want to perhaps curl up under, under a rock if I can find one. It’s those times where you really do look, look within and find that comfort and that purpose and that drive and you think about those, those people that you’re doing it for and that spurs you on, you get back up again, and you finish that race and know that you’ve made a difference. It is all those things just tied up in a big bundle in our lives that, that give us that motivation and that joy and that hope.   Absolutely. I also love how you talk about that you describe it in such physical terms, because I think it helps us Exercise and Movement. Even that in itself is such a huge driver in reconnecting with our sense of being and who we are. You’re out there, you’re exposing yourself to these extreme elements. We’re all different. Some will not go out, right? Go for this incredible run-in sub-Saharan desert. We all have our ways to get in touch with our own bodies and, and whether that’s through yoga, whether that’s through meditation, whether that’s through some movement activity that helps us feel more alive. I think that’s such a huge part of life. After cancer, feeling more alive, more present more in the moment? More engaged? Like you said, it’s another chance of life, isn’t it?   It is it is. It’s such a defining moment where we suddenly think and look at things with new eyes, and we realized we want to be as healthy as we possibly can. we want to engage with as many people as we can make a difference. Trust our bodies again. I’m all for yoga and having an ocean swim and a walk. It just helps so much doesn’t it sit under a tree in a park to go and have a trek or look up at the mountains. All those things just really fill our soul and fill our cup back up again. It’s about looking after our mental and emotional welfare as well. It’s all tied in together with our physicality, and to be kind to ourselves, and there will be days where we don’t feel as well as others and to listen to our bodies and perhaps just have that shorter walk or just to sit or write in our diary. To give ourselves that permission and be kind to ourselves and just in enjoy taking those that first breath in the morning, when we wake up and go this is a brand-new day and I’m grateful to be here. let’s see what this day will bring.   I’m so glad that you brought this up Have is like being kind to yourself. Sometimes when we we’ve been through a difficult time, isn’t this we’re so harsh to ourselves, right? I mean, it’s weird that sometimes we can be so kind to other people that sometimes we forget to be kind to ourselves, right? If you’re whose life has been touched by cancer and you want to make a difference in some way. You don’t really know where to start, what would you suggest to what are some of your thoughts around that?   Yes, I would make inquiries. Whatever cancer it is, whether you’ve had or a loved one has had, there are a lot of different foundations that are related to those particular cancers. I would say find out about them and see how you can get involved. There are a lot that need help with fundraising, don’t they perhaps organize events? To connect there be part of support groups, be advocates? There are lots of things that you can get involved with that way. Also, if you wanted to do your own fundraising, sign up for an event? Things like that. don’t doubt yourself think, how can I get involved? Where can I bring some new value? Just get connected with other people and see how I can bring change? I think we’re all wanting to increase and improve those survival rates? Aren’t we for the different cancers that there are? presently, for ovarian cancer. It’s only 48% of women survive beyond five years, that every day five women are diagnosed here in Australia, and sadly, three women passed away. if we can somehow be a voice and help to bring change, improve those survival rates, but also improve the quality of those people diagnosed and their quality of life that he had, that will be a wonderful thing to get involved with to do.   That’s so beautiful. I think it comes back to what we touched on earlier, we talked about that, making that first step because you never know where those things are going to lead you. They’re going to expose you to different things about life, and you learn about yourself, and you learn about things that are important. they and, and we start to look at and pick up on different opportunities that perhaps were not there before. It’s so important to start somewhere, and then see where that takes you.   It’s that first step. it doesn’t have to be a big one. This is how I look at everything that I have encountered or taken on that it’s that first initial tiny step, and not to doubt yourself, but just take that first tiny step with an idea that you have. Then take another tiny step and another one, another one, and then you find yourself wow, actually, look where I am. I have achieved that, that first goal that I had, and then you can set bigger goals from there. You can bring people along with you. This is the thing, not to doubt yourself, or stop yourself from taking that first step. Just be happy. Be okay with stepping out of your comfort zone and trying something new because you never know where it will take you. That is one of the beauties of life that from when you’re growing up, you can certainly take it to a completely different pathway when you’re older, that you don’t have to stay on the one pathway and be doing something that you expect that you will be doing for the rest of your life. You can take other little tangents in life, head off and do other things. It’s your one precious life that you have and to make the most of it. I would just say don’t hold yourself back. Take that first step whatever it is that you want to do in life, give it a go.   I know that hope is such a big part of your life. What does hope mean to you?   Hope for me means that that there is life beyond today, there is quality of life. That is something that if we can all share hope, then the future looks brighter, doesn’t it? If we can encourage other people in life that’s one of another motivating factors with my running that I love to encourage others to, to run or to get fit, and to show them that like I’m 57 now that you can be 57 and still get out there and run ultra-marathons that they’re there. The future does look good and bright., and yes, it’s all about living with that that positive mindset. I mean, certainly acknowledging that tough things happen. holding on to that hope within that gets us through those dark times those difficult and challenging times. Hope definitely is one of those words that I remember when I was waking up in, in recovery, after surgery, holding on to hope that everything would be okay, that we would get through this journey. Yes, that second chance of life would lead on and, yes, I would have another day.   So powerful, Heather. If somebody wanted to find out more about your book, and about everything that you do your adventurous spirit? Tell us? What would they do to find out more?   Yes. I’m on socials, Heather Adventurous Spirit on Facebook and on Instagram. Also, my book is available. All the hard copies have sold out. I have recorded it with Audible books. It’s available as an audible book with Audible.com. It’s also available as an eBook for Kindle or for other devices on Amazon and Booktopia. Book Depository. You can find it as an electronic version. I’m so excited to be able to share a copy with one of your listeners. That I was able to send to you, Joe and that that means the world.   Thank you so much for doing that. I’ll be putting that out on social media. I know our listeners can write in for their chance to get a heather Hawkins’s book, Adventurous Spirit to get your copy. Or go out and buy it or send me an email at [email protected] for your chance to get a hardcopy of Heather’s beautiful book with a handwritten inscription. Heather, thank you so much for being here. I want to also thank you not only for your time, and your insight, but also, I want to deeply thank you for the work that you do out in the world. Thank you so much.   Thank you so much, Joe, for the opportunity to share and thank you for all that you’re doing as well. You’re making a massive difference, since it’s so appreciated. Thank you.   Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

I was lucky to guest on Men With Spirit radio show – Peter and Steve are doing an amazing job in inspiring men to live a spirited life. Turns out, Peter has been going through prostate cancer so I knew he’s going to bring his unique way of seeing things – and we have got that in spades! Tune in to the episode as we discuss: How living a spirited life can help us cope Getting your priorities to serve you in a time of need Making a difference that supports you, your values and your way of life Links Men With Spirit on Facebook Men With Spirit on Instagram Episode 072: The Magnifying Glass of Adversity with Lee Silverstein     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

This is a conversation I have been looking forward to for a long time: My friend Lee Silverstein, cancer veteran and a beautiful soul! It’s hard to make sense of our life after cancer experience, but the way Lee can distil the essence of our shared experience is a joy to behold! Every time we speak, I learn something new and get a valuable lesson. Here is what we cover on this week’s episode: The Whac-A-Mole of Cancer What it takes to be an informed patient How to live in the moment Taking your power back after cancer Another way to be mindful each day How people respond to you after cancer Links Episode 077: How To Apply Mindfulness After Cancer with Dr Ronald Siegel Episode 075: Meaning of Life After Cancer with Dr William Breitbart Episode 072: The Magnifying Glass of Adversity with Lee Silverstein     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

This is the worst part about cancer – the nameless worries that creep into your life, tugging behind you wherever you go… But it doesn’t have to be that way! We can put worry in its place where you can enjoy the things that you love with people that you care about the most. And it’s critical that you do it NOW. Because how you deal with worry right now will determine the quality of life from this point on. I had no one talk to about it and it seemed like nothing would ever even change… But it can, and it does! This is why I want to share the five big strategies that can help you lead a happier, more fulfilled life after cancer that you deserve to feel more calm and in control of what is going on around you. Here is what we cover on this week’s episode: How to bring your worries out into the open so they lose control over you Clawing back your sense of control How to make sense of what is going on to find greater clarity Set clear boundaries to stop worrying from taking over your life How to take focus away from worry Video Links Episode 039: Exercise Boost Through Treatment and Recovery Episode 002: How Exercise Helps Crush Cancer Register for Stable and Predictable Life After Cancer Webinar     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

It is only when I look back at life after I finished treatment that I realise how much of a struggle it’s really been. I had no one talk to about it and it seemed like nothing would ever even change… But it can, and it does! Having spent three years of deep work to get on top of worry and stress I am here to share with you five big things that can help you get there that much FASTER. In each of the big five, I give you practical tools and mindset to make these come to life. Because you don’t need theory, but real world implementation! Here are the top five ideas we go through on the roadmap to thrive after cancer in this week’s episode: Get your energy levels up Redirect your worry Recharge your relationships Set yourself up to win Make giving a way of life Video Links Episode 039: Exercise Boost Through Treatment and Recovery Episode 002: How Exercise Helps Crush Cancer Register for Stable and Predictable Life After Cancer Webinar     Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Cancer is no laughing matter, but finding humor through life can help us get through the difficult times and make sense of our journey. My guest today has made humor a way of life, and Michael Shafar has flipped his cancer experience on its head to live it up as part of his stand up. Michael is awesome because in addition to all things funny, he also makes a contribution towards supporting cancer clinical trials for below the belt cancer that we talk about today! Links Michael Shafar (official website) Michael Shafar (Twitter) ANZUP Cancer Trials Group Limited I put this book together to help you thrive in times of uncertainty (plus find out how you’ll be helping ANZUP cancer trials):   Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

You don’t think about cancer when you’re young. Your hopes and your dreams they still lie ahead even when you haven’t found them yet… And that is why it hits you SO DAMN HARD. You never see it coming and what’s worse, neither does anyone else. Your friends find your cancer weird to talk about it, and no wonder – what do you say or do without coming off weird or insensitive? And how do you make sense of it all when you haven’t even figured out life yet?  This is the reason why Geoff’s story is so vital. Having come face to face cancer as a young adult, Geoff found a way to get past the troubles and created an organisation to help young adults dealing with cancer. This incredible mission that Young Adult Cancer Canada (YACC) has not only helped Geoff heal, but has also inspired change makers to join and support the cause (check out the most recent conversation with cancer thrivers Gabrielle and Alex) and brought together thousands of young adults in the knowledge that they are not alone. Geoff is an inspiration and his message of finding meaning and connection is exactly what. Here is the video version of our conversation: Links Primetown: a virtual cancer summit for young adults and those who care for them Young Adult Cancer Canada And check out my brand new book on thriving in times of uncertainty: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Today, I am talking to Carly Flumer about advocating for your health during cancer. Carly shares her approach to share your story and get the support that you want on social media. I wish I thought of this when I was going through cancer – oh Carly, where were you then?! Here is what we cover in our discussion today: How to stay positive when your world is falling apart Staying on top of your treatment options How to get the most out of social media during cancer What to say (and NOT to say) to a person with cancer and much, much more! Links Carly Flumer on Twitter Symplur Healthcare Hashtag Project Carly Flumer on Instagram And check out my brand new book on thriving in times of uncertainty: For man with cancer: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Today, I am talking to my favourite cancer thrivers and fellow podcasters Gabrielle and Alex about making sense of life beyond cancer. Alex and Gabrielle speak to the challenges we all go through, but always looking forward, towards the future and making your difference on your terms! And you can’t get enough of that, can you? Here is what we cover in our discussion today: What does thriving look like in real life How to move past anger The life beyond treatment Reflecting on your cancer experience Let Go of Your Shit theory Why our stories of cancer can help us heal and much, much more! Links Let Go of Your Shit: A Guide for Young Adults Affected by Cancer on Amazon Let Go of Your Shit: A Guide for Young Adults Affected by Cancer on goodreads Soar Above Cancer podcast And check out my brand new book on thriving in times of uncertainty: For man with cancer: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Today, I am talking to my friend Lee Silverstein of WE Have Cancer about finding yourself again beyond cancer to live a happier, more fulfilled life. I love the way Lee looks at life – and he never looks back! Here is what we cover in our discussion today: How cancer changes the way that you see yourself The challenges of life after cancer Dealing with scanxiety The magnifying glass of adversity Why all bets are off after cancer and much, much more! Links Full episode transcript (PDF) Check out brand new book on thriving in times of uncertainty: For man with cancer: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Today, I am talking to my favorite male breast cancer survivor, health advocate and modern day renaissance man Khevin Barnes! Khevin is here to bring his unique blend of hope, fun and inspiration we all need after cancer!! Here are some things that we cover today: Key distinction in how men and women deal with cancer Khevin’s unique perspective on cancer How to sideline worry through contribution Living in the moment: beyond the cliche Khevin’s insight on meditation (you can’t force it!) The practice of life that brings fulfillment and much, much more! Links Khevin Barnes | Cure Today MALE BREAST CANCER SURVIVOR Khevin Barnes; Male Breast Cancer Survivor, Cancer Writer, Inspirational Keynote Speaker Episode 021: Laugh Your Way to a Better Life After Cancer  

Today, I am talking to prostate cancer survivor, men’s health advocate and author Alan White. Alan is a no-nonsense kind of a guy who gets straight to the point – and that’s what you need when you’re dealing with cancer! Here are some things that we cover today: Breaking the news around cancer Why us men have a hard time dealing with cancer 2 diverse ways yet powerful ways of changing how you think about cancer Getting yourself ready for treatment and the challenges that may lie ahead How support can normalise your cancer experience Using the wake up call of cancer diagnosis to live the life you want and much, much more! Links The Prostate Zone  

Today, my friend Troy from GeekAloud is talking to me about my new book called Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer! So excited to finally share some great training here because I know it can help! It’s the book I wish I had – a practical, hands on guide on dealing with stress, craziness and overwhelm that come with cancer! Here are some things that we cover today: Regaining control of your life during cancer The vital role of sharing your cancer story Joe’s key strategy of dealing with worry and uncertainty How cancer changes your perspective on life and how you see yourself Being in the moment and how it helps you in the times of stress and worry and much, much more! Links Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer Book Virtual Book Tour Video  

Today, I am giving a complete virtual tour my new book called Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer! So excited to finally share some great training here because I know it can help! It’s the book I wish I had – a practical, hands on guide on dealing with stress, craziness and overwhelm that come with cancer! Here are some things that we cover today: Regaining control of your life during cancer The vital role of sharing your cancer story Joe’s key strategy of dealing with worry and uncertainty How cancer changes your perspective on life and how you see yourself Being in the moment and how it helps you in the times of stress and worry and much, much more! Links Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer Book Virtual Book Tour Video  

You never expect to get testicular cancer. Getting the news is such a shock to the system and you are completely unprepared! It’s a crazy time in your life when you don’t know what’s going on, or how things will turn out. Having gone through chemotherapy and operation for testicular cancer, I’m here to share with you exactly what it’s like, what I learned along the way and things I would have done differently knowing what I know now. Here are some things that we cover today: What are your treatment options Making crucial decisions about treatment that are right for you and your life How to deal with worry and stress when it comes to testicular cancer What BEP chemotherapy is *really* like How to talk about cancer without having people feel sorry for you How to understand exactly what’s happening, every step of the way and much, much more! Links Simplify TC Simplify Cancer: Man’s Guide to Navigating the Everyday Reality of Cancer  

I found out about Stan by reading his book and it really spoke to me because it covers all the difficult topics that come with talking to someone with cancer.  Stan is a really deep thinker who uses his own cancer experience to distill his wisdom into practical ways of dealing with cancer. Here are some things that we cover today: Dealing with the shock of being diagnosed with cancer How to get the support you want Different perspectives and dealing with reality of cancer and much, much more! Links Stan Goldberg website and blog “I Have Cancer”: 48 Things To Do When You Hear Those Words by Stan Goldberg Loving, Supporting, and Caring for the Cancer Patient: A Guide to Communication, Compassion, and Courage by Stan Goldberg Full Transcript Joe:                 Stan, thank you so much for taking the time to talk to me today.  I love your book: Loving, Supporting and Caring for the Cancer Patient.  Tell me, how did that come about? Stan:                How did the book or how did my interest in cancer? Joe:                 Both. Stan:                Okay.  Well, I developed prostate cancer at 57.  It wasn’t unexpected because my PSAs had been high, and the rectal exam always showed something that was not right within the gland.  I always had suspected it.  When it finally was diagnosed, it still came as a shock, as it does for almost anybody who gets a diagnosis of cancer.  What I started experiencing were the kinds of reactions that I thought were odd from some people and were very genuine from others. One of the things that kept coming up was when people heard I had cancer and that neither I nor the oncologist knew the outcome of it, was the standard phrase, which was, “I’m so sorry to hear that.” Then sometimes that was the end of the conversation.  Other times, another statement followed, “What can I do to help?” Well, as I started talking to other people with cancer and counselling them, I found that what people said to me wasn’t unique. That it was something that almost every person that I’d spoken to who’d cancer said, “Yes, you know, good friends will say, ‘I’m so sorry’, then there’s nothing afterwards.”  What I wanted to do was, come up with a book for people who knew someone who had cancer.  Essentially said, there are a lot of things you can do.  There are a lot of things you can start by understanding what someone who has cancer goes through.  Then there are different things that you can learn to do. Instead of somebody saying, “Jeez, I’m so sorry to hear about what you’re going through”, to have them say, “I’m so sorry to hear what you’re going through and I know that it’s important for you to get out every day.  Why don’t I come here tomorrow at ten, we’ll go for a walk?” It was in many ways as simple as that.  That brought about the book. Joe:                 Yes, fantastic.  It sounds to me like, I think this comes from my own experience, that most people in your life, your friends, your family, they want to help, they genuinely want to be there for you, but they just don’t know how.  We have to guide them.  Would you agree with that? Stan:                Yes.  I think it’s a two-point process.  One is, yes, you need to guide them.  The other thing is, what I found is, there are a lot of people that are so afraid of death and so afraid of cancer, that even though they want to help, it’s scary for them to do that.  It’s almost as if I’m going to acknowledge that your life is finite and that I may lose you, what it says, I reflect back on myself. If I’m okay with accepting death as a part of living, then I can go ahead, I can help you, I can do things that other people may see as impossible to do, in terms of healthcare and other things.  If I am so afraid of dying, that to put myself in contact with you increases my fears, then that person needs to work on themselves before offering you help.  Does that make sense? Joe:                 Yes, absolutely.  Those people who are uncomfortable, like you said, with death and dying, how do they come to terms with that reality? Stan:                If I knew that answer, this would be a wonderful world to live in.  If you look back historically, in the middle ages, when death was rampant from the black plague and other things, people accepted death as if that’s just a part of living.  That’s what we do, we die young.  It wasn’t something we’re afraid of because you saw it every day.  I think as we became more civilised, more industrialised, we tried to make death something that was easier to accept.  We didn’t talk about grandma dying, we talked about grandma going to sleep forever. We didn’t talk about uncle Joe’s death, we talked about uncle Joe going on a long journey.  Instead of viewing the corpses in their natural state, we sent them to special places where they were painted and made to look like they were alive.  We’ve done so many different things to hide death, that it’s not surprising that we were afraid of it.  We put it off to the side.  I think that a way of getting people to be more accepting of death is to have them start talking about it a lot earlier.  It was interesting, I got an email message from a ninth grader in New York City, who wanted to interview me about living with cancer. I thought, a ninth grader?  How wonderful is that?  Of course, I did the interview.  We spent some time talking.  I said, how is it possible that you want to explore a topic that 95 percent of adults are afraid of discussing.  He told me that his grandmother has cancer and he knows she’s going to die.  He wants to understand it a lot better.  I think there’s hope.  I think the younger we start talking about death to people, the easier it will be for them to accept it.  When I was diagnosed, both of my children were adults, we started immediately talking about my death. Now, this was 16 years ago.  What I tried to instil with them then is to realise there will come a time when I’m not going to be able to fight my cancer anymore, unless a bus hits me first.  When that happens, they need to accept it.  Until that time, we need to live our lives as if today was my last day.  For them and my wife, that’s working. Joe:                 That’s a powerful transition, Stan, because I think it’s possibly also a reason why being diagnosed with cancer is such a shock, because it just hits you.  It stays with you, doesn’t it? Stan:                It does, but it transforms in different ways.  I think when I was first diagnosed and I heard the diagnosis, that you have cancer, and we’re really not sure what the prognosis is.  It was almost I went into shock.  A lot of people really don’t think about emotional shock to be the same as physical shock, but it is.  Both forms of shock just debilitates you.  When I heard that, because my assumption was, cancer, death, cancer, horrible experiences, death.  The analogy just keeps going on and on. What I learned, not from my cancer, but I learned from the people that I served in hospice is, there are different ways of approaching ideas about the end of your life.  The most important thing that I learned from my patients was that the way that you live will determine how you die.  If I live fearing every day, fearing every piece of food I’m going to put into my mouth, I’m going to die with a lot of those fears.  If I turn that on its head and say, “You know, who knows how soon I’m going to die. I may not be able to do anything about that, although, I’m trying, but what I can do is, make every day that I am alive work and be meaningful.” To me, that was the big lesson.  If I have to thank cancer for anything, and I’m reluctant to do that, that would be it because it essentially gave me a new understanding of how I wanted to live my life for as long as I have.  I would prefer to learn that from a crazy uncle in a bar over a beer. Joe:                 Yes, I love that, Stan.  I couldn’t agree with you more, that if we live each day as if it was the last, that really makes a huge difference into how you see yourself, how do you experience your life.  You’re living in the moment and all of those fears and thoughts about cancer and all of those horrible things that might happen, they kind of just go away, don’t they? Stan:                Yes.  It’s interesting.  I recently wrote an article and it was about complacency and living with cancer.  The reason that I wrote it is, now, for 16 years, my oncologist and I have kept very good tracking of my cancer.  For some of your audience that doesn’t know about how cancer works, there’s a measure called a PSA.  A PSA is a measure of a protein that prostate cancer cells produces.  After you’ve been treated or waited to be treated, the oncologist will look at measures of PSA.  The higher the PSA, the more active your cancer cells are.  The lower the PSA, the less active. Now, he measures that along with measures of testosterone, the male hormone.  Testosterone is the main ingredient that can fee cancer cells.  The idea is, you keep your testosterone low and if everything is working as it should, the cancer cells PSA will also remain low.  You can live with that indefinitely.  That’s what’s been happening for 16 years.  It’s been this perfect correlation.  Keep the testosterone low, PSA stays low.  Recently, that’s been changing somewhat.  It’s taking longer for the PSA to become undetectable. Now, when it becomes undetectable, that’s when we stop the injections and we wait until rises and then we start injections again.  We knock it down.  It’s like a heavyweight fight where you have a punch-drunk fighter in there, whenever it’s appropriate, you hit him, and he goes down.  Well, my punch-drunk cancer cells are getting up a little quicker now.  It’s become apparent that it’s taking longer to knock them down.  Not only that, but we think that there are some that are now learning to get their nourishment from things other than testosterone. That’s the beginning of the next phase of my cancer.  I wrote this article.  Essentially, it was not so much to share with people the stage that I’m at, but rather to have them understand that after a number of years of everything being fine, you become somewhat complacent.  I did.  I was complacent about how I was leading my life.  That changed when we looked at the data and I realised that I probably still have a lot of time left, but I don’t know how much, and I’ve been wasting a lot of it by being complacent about my life. I wrote the article, lots of response, a lot of people read it.  It was interesting to see the reactions of people.  There were some people who clearly had read my book on being compassionate to cancer patients and had internalised it.  These were not only friends, but these were some acquaintances, these were some people I didn’t even know.  The way they responded was, okay, so let me do this, or let me do that.  Or what can I do?  It was really clear that they internalised the message of the book. There were other people, and a lot of them were relatives, who still were so afraid of losing me, they couldn’t make that lead.  It was, “I’m so sorry to hear about that.” That’s where it stopped.  I just found it interesting the way people react, how differently they react depending upon what their view of death is. Joe:                 Yes, I guess it’s almost selfish, right, because when you are saying, “I’m so sorry” and it becomes all about you, not about the person who has cancer. Stan:                Yes, I don’t interpret it as selfish so much, more so as fear.  There’s so much fear there about their own lives that is hard to be truly compassionate to someone else.  I don’t think it’s selfish.  That’s the circumstances.  That’s the life they’ve lived.  We always bring back into our present everything we were in the past.  Not only the experiences, but the fears, the loves.  Whenever someone says something to me that is not quite right, instead of judging them, what I usually try to do is say, “What’s the context?  What’s the context in which they made that statement?” When I do that, I’m usually much more understanding of their reactions, even though I’d like the reaction that I would get. Joe:                 Yes, absolutely.  You know, Stan, I had a really good laugh when I read your initial email you sent, I think you sent sometime to your family and friends about being diagnosed with cancer.  What really made me laugh was, their reaction was almost identical to people in my life.  Tell me, how did that all come about?  How did your people react? Stan:                Well, I look at that email with the culmination of my past life.  Now, when I say past life, I’m not talking about different universes, but my life before cancer.  I was a university professor.  Very rigid.  I analysed everything, whether it was some complex clinical program, or whether an apple was sufficiently sweet for a treat.  I was very structured and very unemotional.  When I received that diagnosis, the response that I should have had was, this is something that’s life-threatening.  You should reach out to people who love you, who I know want to help you. That would have been the response I would have liked to have done, but I didn’t do that.  I just talked about context, so I responded in the context of what my life had been.  It was structured, it was playing down the seriousness of it.  It was joking, because if you joke about something, then you don’t have to take it seriously.  It was all of those things that minimized the emotional effects of thinking that you may die.  Some people were very glad they received that kind of email because it made light of something that was potentially deadly. Other people asked, what are you afraid of?  One person was annoyed that I blasted it out to 300 people rather than talking to them individually.  That was the background of it.  That’s why when I wrote this new article, there was no humour in there, there was no deflating the seriousness of what was happening.  I learned. Joe:                 Yes.  People’s reactions, did that surprise you at the time? Stan:                You know, it didn’t because I wasn’t concerned about other people’s reactions.  I was still – I don’t know how many weeks I stayed in emotionally shock.  During that time, I just wasn’t concerned.  I wasn’t concerned how my wife and my adult kids felt.  I wasn’t concerned how family.  It was, hey, I may be dying, this is about me. Joe:                 Yes, absolutely.  Also, I love how you used it in your book, Rashomon, that Japanese classic to describe how truth and reality are really just based on someone’s perspective.  Why is that important during cancer? Stan:                Well, I think the biggest lessons, at least people tell me, that I’ve taught them, people who I’ve counselled whose loved ones had cancer, is that they don’t understand that living with cancer is like living with a filter.  Then everything that you see is filtered through this lens.  Someone says, “How are you?” Just as a matter of courtesy, and you’re thinking, is something wrong with my skin?  Am I appearing pale?  Someone makes a comment that, “Jeez, why don’t you come over for dinner next week?” You may say, what, doesn’t he think I can handle my own food?  That I can make my own food? It’s like that not only with cancer, but I found that occurs with a lot of chronic or acute illnesses.  We see the present through our needs and our history.  In Rashomon, which is one of my favourite Japanese movies, you had four people observing a murder.  One actually was the ghost of the guy that was murdered, what they did was, when you heard them tell the judge what happened, it was really clear that each saw the murder through their past history and their current needs.  That I think is one of the most important messages that I could send to people whose loved one is living with cancer. You can’t assume you understand what they’re going through.  Unless you’re going through it.   It’s a plea for acceptance.  When you don’t understand something that a cancer patient is saying, or it comes out as a terrible criticism or something very negative, step back a moment and think about what their body and their mind is going through.  Living with an illness that they don’t know when it’s going to take their lives. Joe:                 Yes, exactly, that’s powerful.  It’s also about, I think what you talked about earlier, as well, you touched on, it’s about offering specific proactive help.  Could you talk about some of the things that someone can do to be direct and specific with the sort of things that they can come in and help someone who’s going through cancer? Stan:                I’ll use the example in the article that I wrote.  I’m a firm believer in traditional medicine.  I will stick with my hormone injections as long as they work, but I also realise that I can do things for myself that fall off of that continuum.  Things such as different supplements, meditations, relaxation, different times and different ways of eating, losing weight.  The list goes on and on.  Now, those are things that I ask people for help I had no problem with that.  When we go out for dinner, people will help me select restaurants where they have food that they know I can eat. When we go over to parties, people know to always offer me red wine, because there’s more anti-oxidants in red wine than white wine.  There are a whole bunch of things like that.  My son knows that my level of strength has diminished over the years.  He doesn’t even have to be asked to life things, he just will do it automatically.  I think that if you have a loved one or an acquaintance who is going through either treatment or living with cancer, the first place to start is to ask them, tell me what I can do to help. Very specifically.  I know you’re having chemotherapy next week, and I know that you’re going to be week.  Let me go out and I’m going to shop for you.  Or, things like that.  You’re having trouble organising.  I know it has to do with the medication.  Let me help pay bills with you, we’ll do it every Friday.  There are a lot of things.  There’s a whole list, but it varies from person to person.  I think that’s the place to begin, the two places to begin.  Understand that they’re living in a very different world than you are.  Two, offer to help doing very specific things that will ease their journey. Joe:                 Yes, that’s great, because it’s like you were saying in the book, that having cancer is a bit like being in a horror movie, when you know that these terrible things are going to happen, but you don’t really know when, so you’re constantly in the state of not knowing what’s going to happen.  Tell me, Stan, what’s your advice with dealing with uncertainty?  What is your advice on living with not being able to predict how things are going to turn out the next day? Stan:                Complicated question and I will probably give you and inadequate answer, but I start on the premise that life is uncertain.  That there are no permanent things.  Whether it’s items, emotions, parts of my body, or anything else.  We live in a state of impermanence, a very Buddhist concept.  If you really accept that and you realise that whatever you have is going to eventually leave you or dissolve, then you start with the mindset that is different for most people, that want to hold onto everything.  We start with that. We then say, okay, if the world is uncertain, what can I do to increase my sense of stability or certainty?  I can be very Buddhist in my thinking that everything is impermanent, but that doesn’t help me when I sit at my desk and I’m annoyed that I can’t do something.  What I suggest that people do is, they start thinking about islands of stability, I call them, or islands of certainty.  What things are there in your life that gives you a sense of stability, serenity?  For me, it’s a couple of very simple things.  I get up in the morning at 5:30, I make coffee, I answer emails, I take my dog for a run, I come back, play my flute and exercise. There are five things that make me feel stable and certain.  It’s different for everybody else.  Now, what I think people can do is, explore what makes you comfortable, explore what makes you relaxed.  Look at those items as things that you do every day.  Some may look at it and call it ritual.  It doesn’t make a difference what it’s called, and how it’s configured, these are your islands that you can hold onto, when everything else is in turmoil. Joe:                 Yes, absolutely.  You have an interesting take on simplicity.  Could you talk about that, as well? Stan:                Yes.  As we get older, we accumulate, we not only accumulate things, but we accumulate activities and we accumulate emotions.  We never seem to want to give anything up.  My brother is about to move to the Bay area and he and his wife had lived in their house for about 30 years.  They can’t get rid of anything.  They have to.  It’s this dilemma for them.  I think that when you look at how we accumulate, I think the question is why? Why do some people become hoarders?  Why is it that I refuse to let go of a woodworking tool that I haven’t used in 20 years?  I think that the answer, at least that I’ve come up with and it may not be correct, is that we falsely believe that holding onto something from the past is going to create stability in the present.  Why else would someone save 25 years of newspapers they haven’t read and stacked them in their apartment?  I think that’s the motivation for why we don’t want to give things up. What I believe is, when you can start doing that, when you can simplify your life, you can reduce it down to the basics.  To those things that are most essential for your happiness.  For me, I have a couple of rules that I use.  That when I look at something that I’ve written or something in my office, if I haven’t touched it in two years, it probably should be thrown away.  I use that.  The other thing is, I look at what would make me happy?  Whatever will make me happy, I’ll keep.  If it doesn’t, what’s the point? Joe:                 Absolutely.  That’s a great rule of thumb, I love that.  Tell me, if someone wanted to find your books, find out more about you, what do they do? Stan:                Well, I have a website, the website is: stangoldbergwriter.com.  On that website, there are about 220 articles that I wrote. Joe:                 Is that all? Stan:                For this week.  All of the article either deal directly with cancer or chronic illness or aging or end of life issues.  Essentially, they all roll up into aging.  They’re welcome to read them, there’s no charge for them, they can download them, they can share them.  No problem with that.  All of my books are on Amazon, so they can either find them to see some of the reviews on my website or do directly to Amazon.  I’m also, I was just asked by Arianna Huffington to write for her new website, which is called Thrive Global. I will be writing articles for them that will also appear on my website.   I’m not working on a new book on aging.  It’s looking at what are the major problems that those of us who are old experience with aging?  What I’ve looked at is, most of the problems have to do with transitioning.  Transitioning from being middle-aged to old is simple, but also transitioning from health to illness to support to loneliness, a whole variety of these transitions. What I’ve done is, I’ve looked at the work that I’ve done on strategies, ways of which you can solve problems.  To say, okay, how can I use these strategies to solve the most difficult problems of aging?  That’s the book that I’m working on right now.  What I’ll be doing is, on Arianna’s website, most of the new articles that will be published will have to do with aging.  Obviously, tangentially with acute illnesses, like cancer. Joe:                 Fantastic, Stan, I’m really looking forward to reading that book.  Well, thank you so much for sharing your wisdom and practical advice.  It’s been fantastic, thank you for your time. Stan:                It was my pleasure.  Thank you.  

Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast! I’ve got a great conversation for you today.  I’m talking to my new friends, Gabrielle and Alex. They have a podcast called Soar Above Cancer, which I love and we have a fantastic chat today about what it’s really like to be a young adult who’s dealing with cancer. Here are some things that we cover today: The shock of being diagnosed with cancer as a young adult The importance of calling on your support network through treatment How relationships and friendships can change after cancer and much, much more! Links Soar Above Cancer website Instagram – https://www.instagram.com/soarabovecancer/ Facebook – https://www.facebook.com/soarabovecancer/ Instagram – https://www.instagram.com/alexmandarino/ Facebook – https://www.facebook.com/alex.mandarino.12 Full Transcript Joe:                 It’s so fantastic to have you on, guys.  Alex, I really want to start with you first, what was life like before cancer? Alex:                Yes, so myself, before the time of diagnosis, right before that, I was about 20 years old, so I was in university, I was studying my Bachelor of Commerce degree.  That was interesting.  I was very into my academics.  I was very interested in school and into the business aspect, working as often as possible and on my studies and things like that.  When you’re 20, you have a big social life, so I was trying to hang out with friends as often as possible, go out on Friday/Saturday nights, even physically I was in the gym as often as possible. I was very active, I was building up muscle.  At that time, in your life, you’re figuring out where you are in terms of what you want to do, in terms of the type of person you want to be, you’re meeting new people, you’re meeting new friends.  It was a very fast-paced lifestyle in a sense.  It was at the time where you feel a little bit carefree and on top of the world. When you’re 19/20 years old, first of all, you feel like you know everything and you feel like when you plan something out, you feel like that’s what’s going to happen and you’re going to see it through to fruition.  Obviously, at the time of diagnosis, it changes your perspective on things, but prior to that, I was a very active human being.  It was a big drastic change when that happened. Joe:                 Yes, absolutely.  What about you, Gabrielle, what was it like for you? Gabrielle:        I was also in university.  Actually, similar experience as Alex, I was 19, I had completed my second year of my bachelor’s degree.  I was like Alex, very involved with school, with friends, focusing on just getting it done and enjoy that life of a young adult.  That, like Alex said, is kind of carefree and really out there.  You get to experience a lot of new things and living on my own for the first time, too.  Then the diagnosis happens.  Then there’s that huge drastic shift that a lot of young adults do live where you might become dependent again and the life just isn’t the same. Joe:                 Yes, absolutely.  Gabrielle, what was going through your mind when you first found out that you had cancer? Gabrielle:        I tend to like to think that I was really thinking, “I’ve got this.” I think I was to some degree.  I think I was in denial, too, at first, about how big this cancer experience would actually become.  I like to think that my first initial thought was, “I can do this.” I’ve got this, we can go from there, and whatever happens, I can manage.  It won’t be easy, but I can manage it. Joe:                 Yes, it’s great that you felt that you could work it out.  Alex, did you feel the similar way? Alex:                I would say so, but initially, I would say shocked.  I’d say for the first ten seconds or so, I didn’t really know how to react.  Obviously, your parents are in the room, so you want to be strong.  It’s a new experience.  It’s not something you’d feel like you’d hear at any age, let alone when you’re younger.  For myself, I thought it would be maybe easier than I anticipated.  Obviously, the words leukaemia or cancer in general, you think the worst.  At the same time, you think, okay, I’m young, maybe it’ll be okay. All I have to do is deal with the treatment that they’re giving with me.  It’s almost as if you’re saying, “Here are the tools, now you’ve just got to do this, and you’ll be fine.” My mentality was, it was just a straight line, let’s just focus on the task at hand.  Hopefully, with the support of the people around me, then I can be fine.  At the same time, I was so focused on my life prior.  I think one of the first thoughts was, no, this sucks, I’m not going to be able to stay in school. Not like, my health is in jeopardy.  Not, okay, now I’m going to lose two years to focus on cancer.  Your priorities, mine weren’t really in check.  It was definitely a whirlwind.  Yes, it was difficult to take at first.  I think my initial thought was, “I can do this, but let’s at least reach out to my support system and let everybody know what’s going on.” Joe:                 Yes, absolutely.  You mentioned that your parents were there, and you were trying to not freak out for them, as well.  What was it like with your family and friends?  Did you feel that you had to behave in a certain way? Alex:                Yes, it’s tough because I think you feel like you have to become – be the same person that you were initially, because when you get all of this information, I know one of the first days everybody came in, the doctor, the new dentist I might be dealing with, the nurses, everyone with all of this new information.  Me and my parents, we knew all of the stuff we had to do.  Within the first couple of months, we knew how this situation went. We had a regular routine.  At the same time, not a lot of people outside of my immediate family knew what was going on.  They knew the idea of cancer, but the idea of what comes with that, it’s a very vague image of what to expect.  For myself, I felt a lot of the time, I had to put on this brave face.  I had to be the exact same person.  I didn’t really like to be pitied, so I always tried to be as strong as I possibly could, even though there were some days I didn’t even feel like even talking to anyone.  I did have, one thing I will say, an amazing support system.  Some of the closest I’ve ever felt to my family. They were, by far, the part that made it the easiest for me to actually go through this experience, but I know a lot of the times I felt like I had to be the same strong person.  I had to be as confident as possible because I didn’t want to look weak at any point, which is hard because there are some good days and there are some bad days. Joe:                 Yes, absolutely.  Sometimes to pull yourself together and you don’t really know what to say.  Gabrielle, what about you, how did you react with other people? Gabrielle:        I was really open about my cancer experience.  I’ve always been, and I continue to be because I think it’s important to share that.  I had the misfortune to go through it, through a lot of it.  For me, it was important for me to just be open.  By being open, I think it allowed other people to be a little bit more comfortable with the experience, too, which allowed them to be a little bit more present in my life.  When you’re diagnosed at 19, you have family who’s more than amazing and able to show up.  They know how to, and they just love you unconditionally, so they’re able to show up. When it comes to your social life, you’re 19 and no one really knows how to react.  By being open and really capable of speaking on the subject and being comfortable.  I used to be able to take off my scarf and I didn’t have hair.  I just felt really comfortable talking about it and being with that experience that I think helped me cope within my social group and let them in to that experience that was new for all of us. Joe:                 Yes.  Absolutely.  When you were going through treatment, did you know anyone else who had cancer or especially young adults? Gabrielle:        We have a wonderful community here in Canada.   Alex, you’ll be able to speak to that, too, I’m sure.  We have an organisation called Young Adult Cancer Canada.  They are absolutely amazing.  They have local chapters in the major cities, as well as they do retreats and a conference and there are online forums where we get to chat.  I wasn’t very active with them from the start, but as I went along, I did meet some people through that website. That’s actually how Alex and I met.  That was a huge support.  I think it’s important to be able to talk to other young adults that are going through that experience because it’s such a unique perspective on the entire experience of cancer.  I’m sure, Alex, you have more to add about YACC, but from me, that was really key when getting in touch with other people who just understood what I was going through. Joe:                 Yes, absolutely.  YACC, what a great acronym.  Alex, what was it like for you, man? Alex:                Yes, I didn’t know anyone going through the actual experience, especially when I first started, I think I knew one person who I used to go to school with who had lymphoma at one point and went through the experience.  I had reached out to him when he was going through it, I think a couple of years prior to me.  It was just, I hope everything’s okay, everything is going fine with you.  If you need anything, let me know.  It was brief.  Then when I had it, I was in this by myself in terms of the actual cancer community. Then similar to what Gabrielle is mentioning, I found YACC, Young Adult Cancer Canada.  The founder actually reached out to me about a month into my treatment.  I just wasn’t listening.  I wasn’t having it.  I didn’t really want to deal with any other people with cancer.  I felt like, okay, I don’t really want to have to talk about this like a social support group.  I think I’m just going to focus on my friends, maybe I’ll just push through this and then in two years I’ll be fine.  It worked but at the end, I said, okay, I met someone through the hospital that I went to in Toronto, Princess Margaret Hospital, so it’s the cancer centre there. I think I met someone who was going on their last day.  We talked for a little.  I found them on the YACC website.  We started chatting.  She said, “Do you know what?  You should just come out to this program and just meet some of these people.” That was my introduction into YACC.  From then on, I met like 100/150/200 people around who are similar in age, it’s about 18 – 39 years old, that are going through it. You can talk to them about anything, they have the survivor conference every year where about 100 people come in and it’s like a two or three-week activity, conferences, all that fun stuff.  Afterwards, I felt that community and I was able to talk to people about everything.  Initially, I didn’t really know a whole lot of people, so it was difficult, but once you find that calling, it was fantastic.  I always recommend getting in touch with people going through the same thing because it’s really a good shoulder to lie on. Joe:                 Yes, absolutely.  I really regret not having that support system, as in these people going through the experience.  In a way, it was meeting this one guy at the hospital, which was a really fantastic experience, because I guess no matter what support you have from family and friends, there are still times where you feel like, and you feel confused, when you feel alone.  Did you ever feel like that?  If so, what did you do then? Alex:                Well, I know for me, there are always times you’ll feel alone because if you have your family and friends, like you said, they’re a support system, but it’s not first-hand, it’s something that you have to experience, when you’re feeling sick or nauseous or mentally drained, it’s something that you’re dealing with, not everyone else first-hand.  You have to search inside yourself and deal with it.  For myself, I just try to keep busy, I would find a book to read, or I would find somewhere to escape reality, put on a movie, go for a walk, clear my head.  I like being by myself, even now, when I like my alone time. I think a lot of that stems from the cancer experience itself.  When there are times I just felt alone, either I would just deal with it in the sense I would find a way to escape reality through fiction or through reading a book, an activity, trying to work out in some capacity.  Then in times where it was just too dark and too difficult to deal with myself, I’d probably try reach out to someone in my family and chat with them, or meet with a friend I hadn’t seen in a while and say, “Do you want to grab a coffee? Just go out, chat about life and see where that conversation goes?” There are a lot of different ways to deal with it, but there definitely were times where you feel alone.  Even when you have so many people around you.  Unless you have someone, who knows exactly what you’re going through, sometimes there are certain aspects of like that you just can’t really talk about. Joe:                 Yes, absolutely.  Gabrielle, how did you try to find that balance of being by yourself and being with other people? Gabrielle:        Yes, I think I’m very introverted, so I think a lot by myself, I reflect a lot.  That’s a time that I really do need to process the experience.  I’ve done it through the entire experience.  I continue to do so now, considering that it’s not necessarily over after treatments are.  There’s stuff to deal with afterwards, too, so I continue to be really reflective in enjoying that time by myself, where I do get to reflect on everything that’s happened and figure things out for myself.  At the same time, I really enjoy having that support from others, so my family is great. Of course, they offer me most of the support that I get.  As well as socially, I have friends who have stuck with me through the entire process, who understand my story and who are still around, which is really nice.  Of course, Young Adult Cancer Canada has offered me an opportunity to be social and receive that support from others.  Balancing it becomes easy when you have such a great support system who allows you the time that you need to be alone and to reflect and to process, but also welcomes you with such open arms when you need to chat and to get your mind off of things. Joe:                 Yes, that’s a great balance.  In terms of reflecting, do you have your own process, what do you do? Gabrielle:        I’m just a thinker.  I just think all the time.  That’s in my nature and my character.  I do have a blog and Alex and I have the podcast, where I do get to reflect a lot.  I had stopped blogging for a while just because things were getting hectic in my life.  I’ve started again.  I think that’s one of the best ways for me to reflect on things I did to put my thoughts on paper.  Put them in an organised fashion, because in your head they’re never really that organised.  We get to share it either on the blog or with Alex and our guest.  That’s always a lot of fun. Joe:                 Yes, that’s great.  Alex, what about you, man, do you do things apart from the podcast, like in some structured way? Alex:                I had started actually about eight months ago, writing on a Microsoft Word document and I wanted to start a book, like an autobiographical piece about what I went through.  Just for the two and a half, three years, of right before cancer, and cancer itself and going through.  Then a little bit of right now.  I got about 40/50 pages in and then I took a hiatus, based on, Gabrielle said, you get busy, you have other stuff going on.  Then sometimes you take a break, sometimes it’s hard to get back into it. It’s been something I’ve been meaning to get back to because it is good to reflect and I want to be able to write out and discuss many of the points that I went through, whether it’s good, whether it was bad, trying to piece together a lot of ideas and advice to the next set of cancer survivors that are going through the things that they have to go through.  It’s not something I was working on recently, but it was something I was working on last summer. It’s something that I really do want to get back to because it helps me get some peace of mind and some closure on the experience itself.  It obviously, when something maybe comes out and they can put something together, if I can actually publish a book one day, then it would benefit the kind of people going through cancer in a young adult sense, and even maybe when you’re a little kid or maybe older.  A lot of the advice and a lot of the lessons are universal. Joe:                 Yes, it’s interesting how your perspective changes, from the moment you find out to the moment when you’re in treatment.  Then now, like, you’re still going through check-ups.  When you were thinking about the book and thinking about it now, how does your perspective change around that? Alex:                Yes, it’s a lot because when you originally start, I think a lot of people going through cancer just want it to end, they don’t want to have to deal with any of this ever again.  I’m speaking for myself.  I know I just didn’t want to have to deal with anything.  I didn’t want to have to bother talking to anyone about it.  It was just we have the two and a half years, two years, two months, let’s just do it and get on with it.  I didn’t even want to have to write about it or talk about it. Then when you get either halfway through or near the end, you start realising, okay, obviously, this isn’t fantastic, but I’m learning a lot about myself.  I’m learning a lot about what I want to do in the future.  As much as I don’t want it to be a part of my life, it is actually a part of my life.  It’s something that I should be a little bit more aware of and maybe use it to benefit the greater good.  Even something like Gabrielle and I, and yourself, making these podcasts and the blogs and stuff like that, we do it for ourselves, but we do it for others. Even writing a book, okay, I get to write out my thoughts, but then I also get to help out people hopefully who get to see this perspective.  Even if I can help one or two individuals, then I’ve done my part to give back.  It makes you somewhat of an advocate for cancer, even if you don’t want to have to deal with the treatment all over again or something like that.  Your perspective changed because it comes a part of your life, a lot of people really just want to give back and they want to help as much as possible. Joe:                 Yes, exactly, because I guess life is never the same after cancer, right? Alex:                Absolutely.  It’s completely different.  There’s so much change, there’s so much thought process that goes into it.  What do I want to do in the future now?  Everything changed.  You don’t see like as differently.  There are a lot of clichés that go into it.  Things like, do you know what?  When things like this happens, life is so precious.  Everyone is like, yes, that’s a cliché, but it’s true.  I’m sure everyone can agree to that. Joe:                 Exactly.  Gabrielle, what about you, what does life look like for you now? Gabrielle:        My life has changed dramatically since the diagnosis day.  That’s okay, I think it changed for the better and looking back, I think I’ve grown a lot from this experience.  All the changes have been good and have been things that I’ve actually chosen to do.  For example, I was heading to law school, or planning to head to law school in the future before I was diagnosed.  Through the experience, I decided that that wasn’t for me and the lifestyle. That just wasn’t what I wanted to do.  I’m now in social work and able to work with the cancer population.  Those are all choices that I’ve made that have made life so drastically different from when I was diagnosed, but for the better and that’s great.  Still, today, I think I’m still changing my lifestyle a lot as I go because, like I said earlier, I don’t think cancer is done.  Unfortunately, when you ring that bell or when treatment is over.  I think I’m still learning and still discovering a lot of things about myself that makes life continuously change, which is what life is all about.  Yes, life is definitely very different.  I think all for the better, which is fun and encouraging to hear. Joe:                 Yes, I think that is exactly one of the most powerful things that people want to hear.  We touched on the fact that there are times when all of us feel lost and alone.  I think it’s important for people at the start of the journey or during the journey to realise that there is life after cancer.  It may be even a better place than where you’re at now.  It’s just knowing that there is this light at the end of the tunnel, right? Alex:                Absolutely. Gabrielle:        I was actually reflecting this week because my cancer experience has not been easy, like any cancer experience is.  There’s been a lot of up and downs, especially when it comes to the psychological mental health aspects.  I think that’s one of the most difficult aspects of my cancer experience.  Then I came to wake up this week feeling really encouraged and for the first time, feeling like myself again. I was really surprised, and it was a wonderful feeling because I never thought I’d really get back to that person and back to feeling this great about life.  I did and it was lovely being able to wake up this morning and I have been trying to think, how can I capture that to give that hope to someone who’s newly diagnosed because you’re going to have hard times ahead.  Look, this moment is coming eventually.  The thing that brought me back to those mornings where there is a light at the end of the tunnel, which is really great. Joe:                 Yes, absolutely.   What about you, Alex, what was that moment like for you?  I guess if you had a friend who just got diagnosed with cancer, what would you tell him or her about what’s coming that way and there is hope? Alex:                Yes, well, I think the first thing you have to say is, look, as long as it seems like this is going to be and as dark as it seems.  The worst thing that you can picture, it’s going to get better.  Regardless of that scenario, there’s always a silver lining when it comes to something like this.  There are obviously going to be your dark days, there are going to be your bright days.  Regardless of the scenario, it will get better in some aspect.  You will get used to what’s going on. You will have the support system, whether you want it or whether you don’t.  Whether that comes in your family, whether that comes in the friends you have around you, whether that is, for us, YACC specifically, or whether that’s some type of support system that is a family of cancer thrivers around cancer survivors that understand exactly what you’re going through.  There’s always a light at the end of the tunnel.  Essentially, if it was someone who I knew, if it was one of my best friends, I’d say, listen, you already have me, personally, for whatever you need.  I know exactly what I’ve gone through. I know every cancer survivor’s experience is a little bit different.  Everybody goes through something different, and there are a lot of similarities.  A lot of the mental health aspects, the physical aspects are very similar.  Whenever you need help, I’ll be there for you.  At the end of the day, when you are saying, this is how long I have to do the treatment, if it comes back, then I have to go through it again, at the end of the day, you have your support system and it will get better.  That’s the thing that I would like to tell that individual. Joe:                 Fantastic, thank you so much, guys.  Tell me about the podcast, how did it get started and how can someone find you? Alex:                Yes, so, Gabrielle, I’ll let you answer that one. Gabrielle:        So, the podcast was started by me.  I did do almost a year of podcasting by myself.  You can find all of those episodes.  We didn’t delete them or anything.  Then I got joined by Alex, so we’ve been co-hosting for about a year now, which is awesome.  We’ve grown this podcast I think in great ways.  The name of the podcast is Soar Above Cancer.  That came about just because I was tired of just surviving through the experience. I had done a lot of work around, how can I really create a life for myself and start really living and not just surviving.  I thought that it was a great opportunity for me to get out there and share my story, which is as much therapeutic as it was to help people.  I think it’s for both purposes.  I just fell in love with the process and blogging and all of that.  I really wanted to bring to people who are living through this experience, just tips and tricks and just our stories and the stories of others who come on the podcast, that can really make a difference in their day. We try to make it weekly, so that people who are going through treatment can listen to it during their treatment days.  Not too long because we understand that half of us, or probably more than half of us have chemo brain, so we can’t concentrate on anything for a long time.  We really try to make it for people living with cancer, so that they can benefit from something for them. Joe:                 That’s fantastic.  Thank you so much for what you do, guys.  I think that’s fantastic.  That’s what gives people hope and understanding and inspiration to go on.  Thanks so much for your time. Gabrielle:        Well, thanks for having us on. Alex:                Yes, thank you.  

Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast! Today you meet with Lee Silverstein who had cancer twice in his life, once as a child and once as an adult.  He has such an incredible attitude and he’s using it to live the life the best way that he can and to help other people through his podcast called We Have Cancer.  Through this podcast, Lee shares information, inspiration, and hope for living the best life you can despite cancer. Here are some things that we cover today: Lee’s inspirational A-G-E approach to dealing with cancer One powerful mindset that can help you during treatment How relationships and friendships can change after cancer and much, much more! Links We Have Cancer podcast Full Transcript Joe:                 Lee, I love your photos on Facebook and on your website and with you and your Batman gear.  Can you talk about that? Lee:                 I’ve been dealing with colon cancer for eight years.  The largest colon cancer support organisation in the U.S.  is the Colorectal Cancer Alliance.  They do a run, a 5k run, and a walk at different cities all over the country.  Each weekend a different city.  The first one is always in Tampa, Florida, which was last weekend.  Instead of giving out, like most of these events, they give out t-shirts, but because it’s the other part of the body, they give out boxer shorts.  That’s where the undi-name comes from.  People dress in funny costumes.  I was always a batman fan when I was a kid, so we called my team: Lee’s Superheroes, and we all dressed up with batman shirts and shorts and boxers and all of that. Joe:                 Yes, that’s fantastic, Lee.  I love that because I think both you and me, and I guess actually many of us, have really uncomfortable cancers in the most uncomfortable parts of the body.  Like, I had testicular cancer, you had colon cancer.  It feels weird to start to talk about it because it’s private and sensitive, right? Lee:                 True, but I tell people when it comes to my disease, everybody uses the bathroom, everybody uses the toilet, and because we all do it, it shouldn’t be something embarrassing.  I know it is, but I tell people: Don’t let embarrassment kill you.  I interview so many people on my podcast who either they themselves waited and waited too long because they were embarrassed to say anything, to talk to their doctor.  Then the disease was more advanced than it should have been.  What’s worse?  Being a little bit embarrassed or having to go through chemotherapy? Joe:                 Yes, exactly.  I think that’s why it’s even more important, like you say, to talk about it and to be honest and upfront.  Just so people feel more comfortable to show up at the doctors and say, “Can you have a look at this?  Can you check it out?” Lee:                 Absolutely.  You’re absolutely right. Joe:                 Lee, I was really shocked to hear your story that you really first had cancer as a child.  What was that experience like? Lee:                 Well, from what I remember, when I was four or five years old, I’m surprised how much I do remember, the story behind that is when I was growing up, I had one sister at the time, another sister came along a few years later.  We were always getting sick, especially in the winter time, strep throat, throat infections.  When I was a kid, the popular surgery was to have your tonsils out if you kept getting throat infections.  They said, “We think we should take his tonsils out.” My parents took me to the hospital the day before the surgery just to do all the testing and bloodwork and all of that.  Something showed up very unusual in my blood test.  They said, wait a minute, this is not good, something’s going on here.  They did some tests and found a spot on my kidney.  It turned out to be a rare form of paediatric kidney cancer called a Wilms Tumour.  Now, a Wilms Tumour if caught early, the cure rate is around 90, if not higher, 90 percent.  Mine fortunately was caught early.  It did cost me my left kidney.  I’ve lived my life with one kidney, which people can do. That experience, even though it happened when I was such a young child, my follow-up, the doctor’s followed me into my early 20s, not so much because there was a concern of a recurrence, because that typically doesn’t happen with the Wilms’ Tumour, I think it was more for their clinical records, that we follow this patient for 20 years, etc.  Even though it initially took place when I was very young, I was, when I stopped the follow-up, I think I already, no, it was a year or two before I had my first child.  That whole part of it was a vivid memory. The impact that had one me was even though there is no studies that show a correlation between that cancer and future cancers, I just felt that someday cancer and I would cross paths again.  It wasn’t a weight, it wasn’t a burden that I carried around, please understand, I’ve always been a very positive person, but it was just, for a lack of a better word, a hunch. They’re starting to find that what does happen is when children are treated, especially with heavy doses of radiation, which is a major part of what my treatment was for that disease, heavy radiation in my abdomen, that that could lead to cancers in an adult.  What a coincidence, that the cancer I had happened to be in my abdomen, colon cancer.  It was discovered just from a routine colonoscopy.  I had turned 50 and my doctor said, “Do you know what you get to do now that you’re 50?” It’s like, okay.  I went and I didn’t have any symptoms and woke up to find I have colon cancer. Joe:                 Wow, what a shock.  It also must have been, just going back and thinking to how it affected you growing up.  I know that when our son had meningitis when it was two years old, thankfully we made it through, but we now the last few years just became so paranoid about everything.  That it just affects how we live our normal lives.  It must have really affected you growing up and your parents, as well. Lee:                 It wasn’t until I became a parent did, I really start to understand what that had to be like, to be barely five years old and to be told, “Your child has cancer.” I still have trouble.  I couldn’t imagine if I was the parent and heard those words.  I’m sure it impacted how I was raised.  I feel like my parents were a bit more protective of me than my younger sisters, with those concerns.  That weight of what if it comes back for a number of years weighing on them.  I’m sure it had long-lasting affects.  Sure, just like you and your son with meningitis, I’m sure it was equally as challenging for my parents. Joe:                 Yes, absolutely.  We all remember that moment when you talk to your specialist, he tells you you’ve got cancer, that really stands out.  What went through your mind? Lee:                 Well, because I just had that feeling that someday… my reaction was, and I don’t know if it’s part that or just part the stereotypical guy in me, right, was, okay, what do we got to do?  I was just three or four months into a relationship with my now wife of six years.  We had just started dating.  I happened to be at her house when I got the phone with the results.  I think she was more visibility upset than I was because just somehow, I wasn’t expecting it, but I wasn’t shocked. I know that might not make sense, but that was my reaction.  The more challenging time was the phone call that we received a year and a half later when we found out that it had metastasized.  That was really tough.  I think that was tougher than the original diagnosis, actually. Joe:                 Yes, I think I know what you mean, as well.  I had a similar experience, where initially I thought that my cancer diagnosis was contained to the testicle.  Later in, a couple of months, I found out that it’s going to spread to my lymph nodes.  That’s when it really hit me.  For me, personally, it was more the fact that I thought it was going to go away, but I found out that it’s still there.  That took me by surprise.  Did you go through a similar experience? Lee:                 Well, my story with the metastasis, originally, my original diagnosis was stage two.  I talked to three different doctors regarding the suggested treatment plan post-surgery.  Obviously, it had to come out, so they took out about 18 inches of my colon.  Then the question was, well, what, if anything, do we do next?  I’m very fortunate to live very close to one of the top-ten cancer centres in the U.S., the Moffit Cancer Centre in the Tampa, Florida.  I talked to the oncologist there.  He said, “For stage two, typically, we don’t recommend chemotherapy, the potential harm outweighs the minuscule benefit that people would get at stage two.  We recommend just watching this.” About three months later, so now we’re talking about five months’ post-surgery, I had my first “routine” CT scan and bloodwork.  A few days later, my wife and I, my girlfriend, I should say, at the time, I took her on her first trip to New York City.  We were enjoying the sites.  I’m originally from New York, so I know the city very well.  I was just enjoying seeing it through her eyes.  My phone rings.  I don’t know how it in Australia, but in the U.S., there’s a saying that if the nurse calls, it’s good news.  If the it’s the doctor calling, not so much. I answer the phone, “Lee, it’s Dr.  Strasberg.” I was like, oh no.   He said, “Your first CT scan came back and there’s a spot on your liver.  We need to get you in for a PET scan.” I explained I was on vacation.  He said, “Well, enjoy the rest of vacation, try not to let it bother you.” I was like, that’s easy for you to say.  I had my few minutes there.  We tried out best to enjoy the rest of the trip.  Came back, had the PET scan, the PET scan came back negative.  He said, “Okay, it must be something benign, but we’ll just keep an eye on it.” This was in September of 2011. That New Year’s Eve, I asked Linda to marry me.  Fast-forward to 2012, December 1st, we got married.  We went for our honeymoon.  Right after our honeymoon, it was time for my next three-month scan, six-month scan, whatever it was.  This had just become something that we checked off our to-do list.  Didn’t really worry about it.  It had been almost a year and a half.  Just go for a scan, everything’s fine, see you in a few months. Go for scans.  That kind of thing.  He walks in and the look on his face was a little different this time.  He said, “That spot on your liver has gotten bigger.  I want to do a biopsy.” We’re like, okay.  I’m sure it’s nothing, it was nothing last time.  You said it was benign.  A few days after Christmas, we had the biopsy.  At four o’clock on New Year’s Eve, we had just bought a bottle of champagne to celebrate New Year’s Eve.  We were three hours away from our first New Year’s Eve.  We made a reservation to a very nice restaurant. We had our first New Year’s Eve as husband and wife.  The day before out one-month anniversary, my phone rings at four o’clock.  Guess who?  “Lee, it’s Dr.  Strasberg.  I hate calling you on New Year’s Eve with this news, but the biopsy came back positive, your cancer has spread to your liver.  I need you in my office on January 2nd.”  That was the devastating phone call.  We hadn’t made it to 30 days in our wedding anniversary.  We kind of laughed about it.  After we shed the tears.  We said, “We’ve just said in sickness and in health.  We didn’t mean now.” When you get married and you vow to love each other and in sickness and in health, you have visions of being old.  Not in a few weeks.  Now that it had spread and now that we’re looking at liver surgery, six months of chemotherapy.  I’ve been dealing with it ever since.  March 21st will be my eight years since I got my initial diagnosis.  I had two lung surgeries last year.  One most recently in the middle/late November in 2018.  The prognosis for me is very good. Today, I had my first CT scan post-surgery.  I’ll get the results the day after tomorrow.  I’m excepting to hear good news.  My doctor called me an outlier.  I think that was his nice way of saying, “I didn’t think you’d be around this long.” I’ll take it. Joe:                 Fingers crossed, Lee. Lee:                 Thank you, I appreciate that.  Meanwhile, I work full time.  I’m in the gym every day before work.  I feel good.  Despite the cancer, Joe, I tell people with zero hesitation, these have been the best eight years of my life.  The good things that have happened to me in these last eight years far outnumber what the cancer has brought to me. Joe:                 That’s unbelievable, Lee.  I’m so glad to hear you say that.  I kind of feel the same way, that it’s changed life in so many ways.  Tell me, how has the change come about?  What do you say that it’s been the best eight years of your life? Lee:                 Well, first and foremost, I found love again.  Married the woman of my dreams.  I was fortunate to be given the second chance at love, both of us.  That takes precedence over everything.  We have a wonderful family and two grandkids that my wife watches during the week.  I’ve taken my experience with cancer and launched the: We Have Cancer podcast, as a way to interview folks like you and me and caregivers and medical professionals. When I first launched it, it was originally called the colon cancer podcast, and a year ago, with the guidance of some friends, we rebranded it from the colon cancer podcast to We Have Cancer, so we weren’t just limiting these stories to people with colon cancer.  The We represents all of us.  Every one of us is touched by this disease in some way.  If not personally, either through a family member or someone we know has been touched by cancer.  We have cancer, we are all affected by this disease. Opening it up to being able to talk to people like you.  No matter what type of disease, what type of cancer they’ve been dealing with has really helped the exposure of the show.  So many great things and so many wonderful experiences have come from this podcast.  Including speaking events and amazing friendships and connections, and people just reaching out to me through the various social media platforms and email saying, “Thank you.  I thought I was alone. Thank you, I thought I was the only one dealing with this topic.  Thank you for giving me hope.” “You interviewed somebody who has lived 20 years?  I didn’t think that was possible”, and on and on and on.  It’s a great thing to be behind the microphone and talk to the people all over the world.  The tagline of the show is offering information, inspiration, and hope to those touched by cancer.  If I can help just one person, which I know I have, it’s made it all worth it. Joe:                 That is so fantastic, Lee.  Thank you so much for what you do in the world.  I think It helps so many people, because like you said, when you go through cancer, whether that’s diagnosis or treatment, or even a remission, there are times when you feel alone, when you feel lost, when you don’t know what the hell is going on in your life.  You want to hear stories of people who were there, of people who had to deal with it.  Hopefully, have come out the end and are here to tell the story. Lee:                 Absolutely.  I never envisioned when I started this project four years ago, actually, this coming Sunday, the 24th of February will be four years since I did my first episode.  I’ve done well over 100 interviews.  When I started this, I didn’t know where it was going to go.  I didn’t think four years later that I’d still be doing this.  I thought there’d be an end to the number of topics I could cover and the number of people to talk to, but it doesn’t end.  I get as much out of this from the guests that I meet and talk to as my audience does from hearing these conversations. The topics we’ve covered, clinical trials, the challenges of being a caregiver, medical marijuana, sex and intimacy.  Talking to your kids about your disease.  How cancer can impact a marriage, and on and on and on, where they just keep coming.  Really, are giving that information, inspiration, and hope that they need, because, as you know, as a survivor, you’re never really done.  The impact of the disease touches people in so many ways and affects so many aspects of our life. As good as many doctors are, they never – they’re there to get rid of the disease.   That’s what they do.  They’re not prepared to talk to you about how might this impact your intimacy.  How this might affect your friends and family?  Every person I’ve talked to tells me that the photo, if you will, of the friends and family who were there for them before their disease, is not the same photo of the family and friends that are there for them when they got sick and afterwards.  The faces change. The people we think will be there for us sometimes aren’t, and people we totally don’t expect to be there for us suddenly show up.  These are all things we’re not prepared for.  Even some of the side-effects and things that the treatments caused. My doctor didn’t tell me I’d get nose-bleeds from chemotherapy.  That was a surprise.  The doctor didn’t tell me, “Hey, your taste buds are going to be shot a few days after chemo.  You need to eat.” My go-to food was macaroni and cheese, that was all I felt like eating when I was going through chemotherapy. All they tell you is, “You’re going to be fatigued and you may get nauseous.” That’s true for every chemotherapy.  “You may get fatigued and you may get nauseous.  There are 50 other things that they don’t tell you.  If I can help fill in those gaps, then I think we’ve accomplished something. Joe:                 Yes.  Lee, you’re so right.  You never run out of things to talk about when you talk about cancer.  There are all sorts of ways and ways that it affects your life, in a million ways.  There’s always something to talk about.  Also, like you said, that each person’s story is unique.   Each person has their own story and no matter what type of cancer, no matter what stage, we are so complex, we got through a range of emotions and how we experience things on a physical and social level. Each story is truly unique.  You never get tired of hearing that.  Lee, I really love the analogy where you talked about the photo of your family and friends, or how that changes from how it was before cancer, to what it’s like after you’ve been diagnosed.  Could you talk about what that means for you? Lee:                 One of the ways cancer has changed me is, I take things a whole lot less personally.  I try to show even more empathy than I did before.  Some people have a really hard time dealing with difficult situations.  They don’t know how to deal.  Since they don’t know what to do, they don’t show up.  They’d rather not be there than, in their mind, say or do the wrong thing.  Or feel like they’re being a burden.  I never looked at that as taking it personally, but I have had some close family members that I barely heard from. When I did, “We don’t want to bother you.” I want you there.  Just call and say I love you and want to let you know we’re thinking of you.  Don’t disappear.  Then some people who I barely called acquaintances were sharing things on social media and doing things that I never expected.  That just blew me away.  There’s not a person I’ve spoken to that didn’t have a similar experience.  It’s just how life works, I guess. There’s no solution, but I would tell your listeners if anybody’s experienced that, do not take it personally.  It has nothing to do with you.  This is someone who, or plural, who don’t know how to handle difficult situations.  Try not to judge. Joe:                 I completely agree with you.  Although, to be honest, Lee, I found that how to do it hard at times.  I understand that it’s the people’s issues and how they relate to life, that it isn’t really about me.  I kind of felt that, well, it is about me because it’s me who has to deal with the fallout. Lee:                 True, yes.  Let me backtrack a little bit because I may have oversimplified that.  I’m speaking from my personal experience.  I’m very active in many of the online social media groups.  I have seen, and it’s very sad, where relationships have crumbled through this.  Where one partner just couldn’t cope and left.  Left the partner who was ill.  That one, how do you not take that one personally? I don’t mean to be trite, I was only speaking from my own personal situation, but you’re absolutely right.  Maybe a different way to look at it is that I’ve been incredibly fortunate that the people most close to me were all rallied around me, and all supported me and showed their love.  I think you’re right.  I have to acknowledge that not everybody is that fortunate. Joe:                 Yes, everyone’s experience is different.  I think we just all, not matter what comes at you, you just have to find ways of dealing with it.  Sometimes it’s hard, and sometimes you just have to focus on the people who are there for you.  I was lucky that my wife and my mum were really there for me in a big way.  For me, I just try to focus on that, and shift focus away from people who didn’t really step up in the way that I wanted them to. Lee:                 Sure.  I made some decisions too.  My parents lived an hour away, they’re in their 80s, “Do you want us to come up and be with you when you’re going through chemo?” No.  I understand we’re 2019, it’s been six years since I started chemo.  Let me do that again, it’s been five and a half years since I last had chemo.  There you go.  I am not in active treatment.  I had two surgeries last year, but I’m not currently in any active treatment.  When I was going through chemo, “Can we come up and be with you?” Fortunately, the cancer centre said you’re only allowed to have one guest with you during infusion.  Obviously, that was going to be my wife.  You know, even if that wasn’t the case, I didn’t want my parents having to relive that again.  45 years later, to have to relive that and watch that again.  It was hard enough having to make multiple phone calls to tell them the initial diagnosis.  Then the metastasis to the liver and the metastasis to the lung. Then the lung surgery and keep doing this over and over again.  Certainly, when I was in the hospital, they came to visit, even a few months ago, but I didn’t need them sitting there, reliving this, watching me go through chemo.   In that case, I felt like it was my job to shield them a little bit. Joe:                 Yes, of course, Lee. Lee:                 Especially at their age. Joe:                 Absolutely.  There’s so much for everyone involved, but for yourself especially, if you’re going through treatment, you’re facing too much uncertainty because you don’t really know how things are going to turn out.  What helped you during this time? Lee:                 My attitude.  I made a conscious decision that I was going to do everything I had in my power to have a good attitude and to show a lot of gratitude and I decided right from the get-go, that I was going to go out of my way to make all of the people around me, not just my family and friends, but when I went for treatment and the nurses and the aids and the doctors, that I was going to go out of my way to make them feel really good because I knew that would make me feel good. I would laugh and I would joke, and I would remember people’s names and when I’d come back two weeks later for the next treatment, I’d say, “Hey, Dan, how’s your son doing in his new job?” He’d look at me like, “You remembered.  “Absolutely, I remembered.  My first infusion, I still remember, this was kind of funny.  They would refer to the combination of drugs as your chemo cocktail.  I’m hearing cocktail and I’m thinking of an adult beverage.   They get me hooked up and the nurse in the infusion centre, she was a little bit on the older side.  She didn’t smile often.  That wasn’t working for me. Once they got me hooked up.  It’s four or five hours, whatever it is.  I’m on the phone with my youngest sister.  The nurse is within earshot but she’s not nearby.  I’m saying to my sister, “I don’t understand, they told me we were having cocktails.  I don’t see a drink anywhere in sight.  I was expecting this thing with a big umbrella in it.  This is nonsense.” I said this is nonsense and the nurse looked up at me, she was listening to the whole conversation. She thought I was ranting and raving.  I was just having fun with it.  I don’t see cocktails around here.  What kind of place is this?  That was the approach that I would take.  On the last day of chemo, my wife and I brought in cookies and brownies for everybody.  That really was my approach, was to smile and say thank you and, how are you?  That’s a tough job, I don’t know how those people do it.  I just don’t know how.  God bless all of them for doing what they do because they truly are angels here on earth. It was important to me, even to this day, even this morning, to smile and have some fun.  That’s what got me through.  People always said, “You have an amazing attitude.  That has something to do with your success.” I go out of my way to correct people because I think that’s wrong.  My attitude has helped me cope.  I don’t not for a second believe that my attitude has helped fight this disease. I’ve met far too many people with attitudes as good if not better than mine that are sadly not here anymore.  If all it took was a good attitude to beat this disease, I would not have lost as many friends as I have so far.  Probably, sadly, will continue to do so.  What it has helped me do is, helped me live and enjoy every day that I do have.  It’s been my best way to cope, is to have a great attitude. Joe:                 Yes, I love what you just talked about, Lee.  It really is true that more positive vibes that you give out, the more you get back.  The fact that you made a conscious decision to just express gratitude and do the best that you can to stay happy and to stay positive and to stay connected to people around you. Lee:                 Absolutely.  It carries over to this day.  I take nothing for granted.  A beautiful moon in the sky or a beautiful sunset.  I stop and I pause and appreciate that.  Just little things.  I’m very fortunate.  My wife and I say it all the time, we are so lucky because we know so many people that haven’t been as lucky as we have.  This was a really revealing moment, when I went in, so I had surgery on my left lung and then on my right lung.  The first surgery was in July. I was talking to one of my other cancer buddies.  What she said to me I think I’ll never forget, Joe, she said, “Wow, you’re so lucky you get to have surgery.” Think about that for a second.  She also has metastasis to the lungs but has too many.  Surgery is not an option for her.  Can you imagine someone telling you, “Aren’t you lucky that you get to have surgery?” Do you know what?  I am lucky that I got to have surgery.  There are people out there that that’s not an option. There are people out there that are scrambling to find options that will work for them because they’re running out of options.  I’ve been through one line of chemotherapy.  God forbid that I need to go back to chemotherapy.  I’ve got three/four/five more different things to try.  I haven’t even dented the list.  I know people who have gone through all five options and are trying number one again, hoping maybe they’ll get lucky. It’s not lost on me that being here eight years that we’re incredibly fortunate and we live our lives that way.  We don’t wait to do fun things.  We don’t want to do the things that we enjoy.  We’re going to do them because nothing’s promised but today. Joe:                 That is exactly right, Lee.  I love your AGE acronym, as well, can you talk about that, too? Lee:                 Yes, well, I talked about the A and the G.  I talk about being proud of your age.  This, actually, I’ve got to give you credit, this comes from my father.  My father will be 85 this year.  He always says, “I hate it when people complain about their age.  Don’t they don’t what the alternative is?” He says, “I am proud that I am 84 years old going on 85.” “This is a contest, he with the highest number wins.” That always stuck with me.  I’m 29, I don’t want to tell you how old I am.  All this other nonsense.  I always thought about being proud of your age.  I use age as an acronym. As the three things that have helped me cope with cancer.  The A stands for attitude, the G stands for gratitude, and the E stands for exercise.  Those three things have had a major impact on how I have coped with this disease.  On a few occasions, I was actually walking on the treadmill, granted, it was pretty slowly, but I was walking nonetheless, with the chemo pump wrapped around my waist. There was this feeling if, if I’m walking and I’m moving and I’m perspiring.  People who are perspiring on a treadmill don’t have cancer, right?   That was what my brain said.  If I’m having to wipe myself off with a towel, how sick can I actually be?  That, again, was something that helped me cope.  That’s age: Attitude, gratitude, and exercise. Joe:                 Yes, that’s really powerful.  If you’re sweating from exercise, that means that things are not really that bad. Lee:                 I tell people all the time, one of the first interviews I did was with a woman who is a yoga instructor.  She even teaches what she calls gentle yoga.  She does sessions over the phone.  She acknowledges that we are all in different places.  She teaches.  She said, “If you have trouble getting out of bed, or if you are in a recliner most of the day because that’s how tired you are and you’re feeling the effects of chemo. I still can teach you how to do yoga from a chair, or how to do yoga from bed, just to get you moving.  Just to get you moving some way.” I’ve interviewed people who have done triathlons in the middle of treatment.  I can’t fathom doing a triathlon if I’ve never gone through treatment.  Goodness, to be able to do that in the middle of treatment, that is a lot of respect for that.  If all you can do is just walk to the mailbox to check your mail, that’s great, do that. Do what you can do, do something.  If you can do weights and the treadmill like I was able to do, again, another example of being lucky.  Great.  If all you can do is just one lap around your house, but you do it every day, do that, if that’s what you can do. Joe:                 That’s fantastic advice, Lee.  I know you’ve been talking to a lot of folks through your podcast about cancer and through other channels.  How has your own perspective now changed on treatment, on cancer, on life because of that? Lee:                 Well, I’ve learned a lot.  I think the area that I’ve become much more aware of in talking to other people is the whole clinical trial space.  It’s not an area that I’ve personally had to investigate, but I feel having learned from the people that I’ve interviewed, that I have more of a comfort level there, should I ever need to explore that.  I’ve got some resources.  That’s one of the biggest things, is that area.  Again, as I interview people and talk to people, I keep finding examples that prove how lucky I am. I don’t that you’ve experienced this yet, Joe, but I’ve published 115 plus podcasts now, probably 125.  Four of my guests are no longer with us.  Talk about leaving an impression.  With four people, and two of those four I actually got to meet in person.  They succumb to their disease.  That’s hard, when you’ve actually interviewed these people and been inspired by these people and they’re not here anymore. Joe:                 Yes, that’s tough, Lee.  Sorry to hear that. Lee:                 Thanks. Joe:                 Lee, if someone wanted to check out your podcast, what is the best way to do that? Lee:                 Any place people listen to music or podcasts on line, they’ll find me.  It’s the wehavecancershow.com, if they want to go to my website.  We’re on Apple Podcast, Google Podcast, all the podcasts.  Spotify.  All of the major podcast players.  Just look for We Have Cancer.  You can also connect with me on social media.  Please do.  I’m on both Instagram and Twitter @wehavecancerpod.  That’s P-O-D.  Again, the website is: wehavecancershow.com.  There’s also a Facebook page by the same name and a private Facebook group for those touched by cancer.  You can find that on Facebook.  Strictly at We Have Cancer. Joe:                 Thank you so much, Lee.  I love what you do.  Thank you so much for coming in and for sharing your inspiration and advice. Lee:                 Thank you for having me, Joe.  Be well, my friend. Joe:                 Thanks, you too.  

Here is what is covered in this episode: Worries during cancer, they grow like grass – needs to be cut regularly or it will take over I tried to get into mindfulness, but realised that I already live life this way, taking each day one at a time, appreciating the little things I tried meditating without success – I’d lie down and feel relaxed but still have a million thoughts buzzing around in my head It didn’t help – still tense, still all over the place… I discovered that the mind releases tension through intense focus, not relaxation Focus directs where you PLACE your energy by doing exercise for the body and the mind Do what’s right for you – choose something you like that you can sustain over time You can’t escape worry during cancer – but you can release all that built up energy when you channel into focus on physical and mental sports Links PLACEMENT Vlog: Dealing with Uncertainty Support Pillar 3 of 3 – Removing tension and stress on regular basis

Here is what is covered in this episode: With cancer, it’s so hard to make sense of it all – at times, you feel so lost, there is no energy, no spark… But this one time, I thought to myself – what if this my last day, what would I do now? Seemed scary when it first popped into my head, but the more I thought about it, the easier it has become to only do things that I enjoy, that are important to me right now With this clarifying question, you are only doing things that really matter and everything else is a distraction I picked out fun, the one aspect of our relatioship that I wanted to stand out for him, andhe responded to it in a powerful way Starting out, you ask yourself this regularly and gradually it becomes second nature When you tune out all distractions, your worries fade into the background, you are bringing PURPOSE around everything that you do Links PURPOSE: Support Pillar 2 of 3 Vlog

Here is what is covered in this episode: Everyone sees you in a particular way, and that builds up gradually to form one powerful feeling It seems like an incredibly complex process that we have no control over, yet do so unconsciously with every interaction And when we start to change it, something magical happens! With my son, I thought – how do I want him to see me, remember me? I picked out fun, the one aspect of our relatioship that I wanted to stand out for him, andhe responded to it in a powerful way It also brought incredible relief to me because I was present, in the moment, focussed on our interaction, not worring about cancer or what might happen This process of selective memories has completely transformed the way I see myself now and how I am with people I truly care about You create a certain POISE, the way you carry yourself and that creates the right balance in your life It gives you the tools for living in the moment which is so valuable because with or without cancer, it can be taken away Links Vlog Dealing with Uncertainty during Cancer Support Pillar 1 of 3: POISE

Here is what is covered in this episode: Panic attack can happen at any time it takes over and you’re not myself anymore You start to worry: – What if I fall down or faint, or stop breathing? How do other people see me, can they tell what’s going on? But fighting it and trying to keep it under control which makes things worse, leaving you worn out and exhausted A good way to think about it is like a train coming towards you – you can’t stop it so get out of the way My technique for dealing with it is called “Feed to Beast” – give it what it wants and it will go away! What I say to myself: “Here it is again, I knew it was coming, I’m going to let it happen and get out of the way Let this waves of panic come and wash over you, and soon it will leave you alone At the end, do a sharp and intense physical movement like jump and clap to break apart whatever tension is left Links How To Stop Panic Attack in 2 Minutes or Less Vlog

I know that cancer changes the way you look at things, the way you think about the future, even the way you see yourself, but even when things are tough, there is still the light at the end of the tunnel, you can make it through and have the life that you want despite cancer! And that’s what I’m talking about today with my new friend, Jim Adams.  Here are some things that we cover today: Reflecting on the cancer experience 28 years later Dealing with the ups and downs of cancer treatment The transformational role of the support group Getting the most out of life after cancer and much, much more! Links Finding Hope Podcast Finding Hope podcast on iTunes Episode 047: Cancer Caregiver’s Journey Full Transcript Joe:                 Jim, I’m super excited to be talking to you because I found your podcast and it just really speaks to me because is where I’m from.  Jim, I really want to first of all, start with life, with your life before cancer.  Tell me, was that like? Jim:                  Let’s see, what was it like?  Well, when I was diagnosed, it was back in 1991, and I had a real rare form of testicular cancer.  It was called non-seminoma germ cell testicular cancer.  It wasn’t in my testes, it was actually a tumour growing from the back of my abdomen.  The way it’s been explained to me is, when you’re in the first trimester, this was called the germ cell that travels down your spine and one deposits in each teste.  Well, for some reason, one didn’t make it all the way down and it didn’t deposit in one of my testes and it, for some reason, at 25, it just started growing from the back of my abdomen. Unlike a lot of other people who are not feeling sick, I ended up losing weight, I got misdiagnosed a number of times.  I had one doctor tell me that he thought I had chlamydia and I needed to share it with my girlfriend at the time, which was crazy because I didn’t have chlamydia.  At one point, I could actually feel the tumour in my abdomen.  I could actually push into my stomach and I could feel there’s something in there, something’s not right.  Went into the emergency room and they started doing testing and checked me in.  They did test after test after test, biopsies, they did colonoscopy, they did down your throat.  I forget what that’s called.  They couldn’t figure out what it was, so they ended up doing exploratory surgery.  Then the way it’s described is this tumour has what’s almost like a yoke sack on it. Once they opened me up, they were able to figure out that it was germ cell.  The funny thing is, the doctor came walking and he said, “We could have done a pregnancy test” because my kind of cancer, it will be positive on a pregnancy test.  He said, “If we had just given you a pregnancy test, we wouldn’t have had to have exploratory surgery.” Yes, so they stapled me up and started me on chemotherapy right away.  At the time, I had complete intestinal blockage, too, so nothing was coming out. They started me on chemotherapy, and I had five rounds of chemo.  They always told me it would be chemotherapy and at the end there would be another surgery.  I had five rounds of chemotherapy and then at the end, I had another surgery, which even to this day, I on occasion go see that doctor and he’s only done one or two, like what he did with me.  The surgery started at 6:30 in the morning and didn’t finish until 7:00 o’clock at night.  They said the doctor looked worse than I did. Joe:                 Wow.  That’s rough, Jim.  That’s crazy. Jim:                  Yes, it was a pretty rough beginning, in the sense of with chemotherapy, it makes you feel like crap.  Having had an abdominal surgery and throwing up was no easy task.  It was a painful task.  At that point, we had the surgery, the surgery there were eight or nine doctors in there when I had it because the tumour, it was bi-lobal, so there were two tumours the size of melons.  They were wrapped around my aorta sitting on one of the kidneys, so I was at risk for losing a kidney.  I had to have a kidney specialist, I had to have a heart doctor. I still remember going in there and seeing all of these doctors.  Of course, they had me on happy juice.  I’m sure you’ve had that happy juice, or whatever that medication is, so I’m not so nervous.  With the surgery, they were able to remove the tumour and it was really successful.  That surgery was probably more successful than the exploratory.  They were able to get the whole tumour.  When they dissected the tumour, though, they did find some more active cancer.  At that point, the doctors in Atlanta wanted me to have another round of chemo, but at that time, I was having severe numbness in my hands and feet.  Potentially, another round would have put me in a wheelchair.  We found that there’s, for most types of cancer, and especially for testicular, there are doctors who do research. We found the foremost doctor in Indianapolis, so we drove to him, or to meet with him.  She shared not to have any more chemo.  I’m so toxic as it is, that I don’t need it.  That’s how it ended back then.  Then it was just a waiting game.  I’m sure you went through it too, you know, every other week, testing, scans, and blood tests, then it became once a month, then every other month, then every three months, then every six months.  Then five years out, they told me I didn’t need to come back. I would come back typically every other year for another ten/fifteen years.  Now, I haven’t been back to the oncologist for about two and a half years, but every once in a while, I’ll go back and get the bloodwork, just to keep myself not nervous or not thinking about it.  I think in some of your podcasts, it’s mentioned whenever you have an ache or a pain, I’ll sometimes jump to conclusions, “God, it’s coming back.  What’s going on?” It’s been… it was 1991, so 28 years since. Joe:                 Wow. Jim:                  Yes, since I went through that. Joe:                 That’s an amazing journey you’ve had.  Do you remember, I want to just go back for a second because you had such a full-on experience, but do you remember what it was like, what was going through your head?  They’ve opened you up and now they’re telling you you’ve got cancer, what was that moment like? Jim:                  Well, it just brought everything to a stand-still.  When I was diagnosed, there was a special lady at the hospital that I was at.  He name was Betty Castellani.  While I was in the hospital, she came to visit.  She ran the support group, so she invited me down.  Actually, invited the whole support group to visit me in the hospital room.  They all came in and sat down and shared their stories.  That was pretty quickly, so it made a big difference because hearing the stories of other people and seeing that they were doing well, and that they were healthy. That’s a support group I’ve been involved in since the beginning, some of the same people I’ve been interviewing on my podcast.  There was a lot of fear.  I just lived in the moment, though.  I remember Betty sharing with me that she thought I was doing really well, because I was able to stay in the moment, not worry too much about my future, or would I be able to have kids, would I not be able to have kids?  When I was going through the chemotherapy, the doctor came in and wanted me to give a sample to be able to put some sperm away. There was no way I could do that at that time, not after having abdominal surgery.  Then we actually had some hope and we thought that I could have kids, then we found out I couldn’t because of those special tests I had.  They did a radioactive test.  We actually went through five rounds of… Joe:                 IVF? Jim:                  Yes, IVF.  Then at the end, they did the tests and it determined that my sperm wasn’t healthy.  It had been impacted from the chemotherapy.  We do have a little – well, he’s not little anymore, he’s 15, but we adopted.  He’s 15.  He keeps us busy. Joe:                 That’s so great to hear that. Jim:                  Yes, so adoption has been wonderful.  When we figured out, well, we found out my wife had issues, too.  At that point, it would be donor egg, donor sperm, so we decided to adopt and that’s worked out really well.  I’ll get back to what you asked.  At that moment, it was a lot of fear, a lot of what’s going on?  It was just a tough time to go through. Joe:                 Yes, absolutely.  I think you’re talking about your support group and I’ve heard about that on some of your podcasts, as well.  I think that’s so incredibly powerful, like you mentioned, just having people there who have been through it, who know what it’s like and looking at them going, “I can be that way.” That’s so powerful, isn’t it? Jim:                  Yes.  The group still gets together, they meet every other Monday night.  There’s a 100 people in it.  Yes, we would talk about life and them all, actually, the woman I was talking about Betty Castellani actually married my wife and I and baptised my wife and son. Joe:                 Wow. Jim:                  We would get together.  We would have fun trips together.  We would probably get together four or five times a year for special events.  Christmas parties or traveling or trips and things like that.  The support group made a big difference.  It was about living and enjoying life and not fearing what’s coming or looking back in the past.  It was a lot of help around those things.  That being in the moment, not trying to think about what the future would bring.  Now that I’ve been out of it so many years, being self-employed, I get my own health insurance and those kinds of things, which, in the U.S.  is kind of crazy these days, but I’ve been self-employed since 2002.  It’s worked out pretty well.  That was one of my fears at first, would I ever be able to work on my own?  Having gone through cancer, you know?  Would I be required to work some place where I could get coverage or insurance?  Went off on a tangent a little bit. Joe:                 No, that’s great.  That’s so interesting.  I’m really happy to hear that you had such an amazing support through this support group.  People that you met face-to-face.  What was it like with your family, with your friends, with people in your life?  Did they support you and did they support you in the way you wanted to be supported? Jim:                  Yes, they did.  My dad, I probably had to tell him to slow down a little bit.  Probably for the first 20 days, I was in the hospital for around 20 days.  He was there with me.  Every day there were times that I had to say, leave me alone or don’t ask me questions.  We would end up watching sports, which would make it easier, because he wouldn’t be focused on me or asking questions.  Yes, he was helpful.  I had some friends who came and visited me when I was in the hospital and that was neat. A lot of times, they would come, the doctor who did the surgeries, that last surgery was quite young at the time, so he’d be sitting in the room and they wouldn’t even know he’s the doctor.  He’d be sitting in there with a polo and he’d be hanging out.  Yes, I had a lot of support with losing my hair and everything else.  There were aspects where I didn’t run into a whole lot of issues where friends would avoid me, but I would get together and go out with friends at different times. I even had some weird things when I was bald, I remember a woman putting her hand up over my head when it was bald, wanting to feel it and stuff.  Even had some funny humour, I remember one time, I have a lot of hair, you probably can’t tell, but I’ve got a lot of hair on my body.  I was sitting getting my chemotherapy and I said, I’ll never get bald.  I’m sitting there bald as anything and started laughing.  I also had a lot of good nurses and a lot of – I got a lot of help. I think we were lucky at that time, the medical centre in Atlanta was considered one of the best places to go through what I went through.  My family gave me a lot of support, my friends gave me a fair amount of support.  Actually, at the time, I was working on my master’s degree, so I had to cancel all of my classes.  They were really supportive, too.  Then I was able to just pick them all back up the next semester and finish my studies.  It was like the worst of times and the best of times in some ways, because it did change my whole focus.  It’s not all about money, it’s not all about things.  It really is about relationships and being with people and being in these kinds of support groups. Joe:                 Yes, exactly.  Good on you, Jim.  I love how you said that you were being in the moment.  You know, not thinking about the future, too much.  Is that something you had to work on or did that come naturally to you? Jim:                  I think with Betty who ran the support group, she worked with me a lot.  She came back every day and she’d have me read specific books and talk a lot.  I’m a little bit of an introvert, so she worked on that day-in and day-out.  I think being in the moment has always been easier for me than some people.  I was okay with sitting there watching movies or watching old shows, like Gilligan’s Island, or whatever it might be.  I was able to do that.  Her being there and helping me through it, I think it made a big difference. Then the other people in the support group.  I constantly had people.  I actually had to tell people to give me a break.  The nurses suggested putting something on the door to let people know, I need a break for two or three hours, just to be left alone, so I could rest.  The other thing, I wasn’t always a good patient.  They would tell me not to get out of bed and sure, I didn’t want someone coming in to help me to use the restroom.  Somehow, they must have known I’d get out of bed, because I’d be in the restroom. Sure enough, the nurse would show up, “What are you doing?” Yes, they told me that I wouldn’t be walking that quickly I think they had me up and walking after both surgeries the next day.  They said I’d be lucky to be walking a half a mile within a couple of weeks.  I think within three of four days, I was walking a half mile.  Going in circles around the floor.  Just trying to stay busy and trying to get out of there as quickly as I could.  I think getting out of the hospital was key.  The chemotherapy was tough. I remember a couple of instances, I don’t know if you had chemo or if you had radiation, but I had a couple of instances where, wow, I’m feeling a lot better, I think I’ll go get something to get.  I love pancakes, so I’d go get pancakes.  I was in the restaurant, had about ten or twelve bites.  I was like, the nausea just hit me.  I had to bolt out of the restaurant and take care of business.  Had a couple of instances like that.  the chemotherapy was pretty rough. Joe:                 Yes, exactly.  I think I went through that experience, as well.  Just pushing yourself a little too much.  You get a little overconfident and for me, it was also I remember going for a walk, and I was on my third round or something.  I was like, I’m feeling pretty good.  I’ll go for this walk in this little garden around the hospital.  I remember just feeling so whacked out.  I was just going; how do I make it back?  Yes, I think those moment, yes, or just having people over, like you mentioned.  Where I would get really tired by the time it would be 7:00pm or 8:00pm and not be having someone over and I’d be really not feeling like talking to them.  I just really feel like having some rest.  I think it’s so important not to push yourself too much in terms of your energy levels, right, just taking it easy. Jim:                  Yes, without a doubt. Joe:                 One thing you mentioned, cancer really changed the way you look at life.  It changed your priorities, things that are important to you, things you really care about.  Can you talk about that? Jim:                  Yes, at the time, I was real focused on making more money and working, almost working too much.  It changed me in the sense that you realise that the relationships are more important, time with others.  I’ve actually, since I’ve gone to work for myself, I typically will work six months with a contract, and I’ll take some time off and work less.  Finding time for family, for friends, going on vacations, even if it’s just going to the beach or up to the mountains.  Just trying to really slow down and not be in a rush and not always be thinking about what’s going to happen in the future, or if I’ll get sick in the future. Just living for the moment.  Realising how precious those moments are.  Just trying to make better decisions, make better choices.  Do what I want to do, but not the other things I don’t want to do or take the jobs I don’t want to take.  Of course, that’s more difficult than it sounds.  I guess small changes over time.  Trying to stay focused.  I’m kind of rambling a little bit. It being so many years, I think I was better at it earlier on.  The first ten or fifteen years after the cancer, I was more involved in the support group, then I lost track in the last two or three years.  I’m trying to get more involved and want to get back to some of those things I was learning before.  That’s about it.  I don’t know if I really answering your question? Joe:                 Yes, absolutely.  Now that you look back on it, because you’re in a great position, all of this stuff is behind you and you’re living your life the way you want to live your life, has your perspective on things and your experience, has that changed over time? Jim:                  Yes.  I think it’s changed quite a bit.  Recently, it’s getting back into a healthier spiritual environment and realising it’s not religion and spirituality, they’re really supposed to be the same thing.  Then, also, bringing in science with spirituality and religion.  I’m a real fan of Richard Roar.  I don’t know if you’ve read any of his stuff or listened to any of his stuff.  There’s been a lot of talk about how spirituality or religion are coming together with science.  Understanding that it’s those spaces that we can’t understand, either when we go really small, like in microbiology, or go really large when we’re looking at the cosmos, that there’s so much more there that we don’t understand. Now, science is giving new hope to things that we didn’t have a whole lot of hope with before.  One that I talk about on my side that I also like to read, and I like to watch, his stuff is Bruce Lipton with his biology of belief.  I don’t know if you’ve looked at any of those, but he does a lot of talks on the relationship of how we feel and who we are, and how we interact with our environment is so key to our health.  He actually talks about, too, that there is something with cancer with relation to us being disconnected from spirituality, being disconnected from our environment and relationships that can make a difference in both getting cancer and then also recovery from it. I feel early on, I was just going along and then now, in the last four or five years, digging deeper into stuff like meditation and spirituality.  Those things have brought me back to wanting to help people who have been diagnosed with cancer recently.  I’ve also noticed so many more people being diagnosed.  I don’t know what it’s like in Australia, but it seems like every day, I hear of someone else being diagnosed with cancer.  I want to help others and help them to deal with it and understand that there’s a lot of hope.  There’s a huge chance.  In my cancer support group, I’ve seen people who have been given very small chances of survival who have done very well. I’ve seen the opposite.  I’ve seen people who have cancers that are very curable, that pass away after a year or two.  The only thing that I’ve noticed with those individuals is how they’re taking care of themselves, how are they doing things, like spirituality, and meditation.  Are they in good relationships?  Are they communicating with others?  It really does make a big difference. Joe:                 Wow, that’s such a great point you make.  Also, I just want to pick up on that you brought up the word hope.  That’s obviously part of the name of your podcast.  Can you talk about how did that come about and why is that important to you and the title, as well? Jim:                  In the cancer support group I was apart of, or I’m still apart of, every year we would do a fundraiser, it was called the Hope Tree.  Then we would also, in our group, talk about how hope was so critical to your success or to your survival.  Those teachings from Betty many years ago and then getting together with some of my other cancer support people.  Realising a lot of them, at the time when I was going through it, I was 25, but a lot of them were in their 40s and 50s.  Now, they’re in their 70s and some even approaching 80.  I realised my time to do these interviews with them was limited. I wanted to share their stories with others, then it grew from that.  Then I decided to look a little deeper about what can make a difference, what can give people hope, to realise it’s so much more than just dealing with the cancer.  Your ability to survive the cancer relates not just to your treatment, but also having faith in your treatment.  It’s a combination of both.  Hearing other stories and realising, wow, this other person who’s had four or five, any number of years of survival with cancer is now living beyond cancer.  Actually, living an even happier life than before cancer. A lot of the people in my cancer support group, they made significant changes in their lives.  I was only 25, but several of the other people, they ended marriages that were unhealthy, they changed careers.  One family, who became really close to another family in the family support group, well, the father actually passed away.  This other family actually adopted his children.  They became adoptive grandparents.   More a title than by law, but they’ve been involved with the little girl, who’s not a little girl anymore, she’s in her mid-20s.  That’s the other thing that’s amazing is, I remember people bring their kids to these cancer support meetings. The kids were three/four/five years old.  Now, hearing the stories, wow, one body is actually in Germany, 28.  It’s amazing, that what we’ve gone through.  I feel like if there were supports groups like that everywhere, the survival rate of cancer would be going through the roof.  Also, I want to find a way to wake people up at a younger age, too.  I think if we live healthier lives.  It’s important what we eat, it’s important having relationships.  All these different things.  It can make a difference, one, not getting cancer in the first place, and then also recovery quicker from cancer.  Also, never getting a recurrence.  That’s where the finding hope, if you have hope, then I feel like things can grow out of that hope.  It can get you up in the morning and keep you from getting down and depressed or in the blues. Joe:                 Yes, that’s fantastic, Jim.  I think that’s really powerful, talking about finding hope and believing in your treatment, your specialist, your medical team, but also finding the right support.  Whether that’s the support from a support group, whether that’s in-person or online, or maybe that’s also just connecting with the people already in your life.  Also, making changes.  I’m so with you, that sometimes you just need to make changes and things take on a different significance.  I love how you said that really sometimes as you move on beyond cancer, that sometimes you look at life and it’s better than it ever was, right? Jim:                  Yes. Joe:                 That’s such a key thing to really move along with your life and to see people like that, and to hear those stories.  That’s what it’s about, connecting that up and thinking, “Yes, I want to be like that, I can make it through.” Jim:                  Yes, exactly. Joe:                 Well, Jim, thanks so much for your time and for your perspective.  I really love hearing you.  I’m looking forward to more of your podcasts.  I hope there’s going to be so many more people tuning in and listening to Finding Hope. Jim:                  Well, thank you, Joe.  I appreciate it.  

Here is what is covered in this episode: When you go through treatment, you get worries that pop up in your head It starts with something small like an ache or a pain and then somehow you start thinking about something awful then it spirals out of control until you can’t stop thinking about it I believe it’s because we lose so much control with cancer things just seem to come out of nowhere So the key to get your power back and that starts with looking at what is within your control It seems like you can’t do anything about it, but when you break it down, it turns out that you have control or influence over most things 1 thing beyond your control is whether the treatment has worked… Everything else is up to you: How much you know about what’s happening How you deal with worry Dealing with treatment, what to expect and how to manage it better Your support network Life around cancer Your recovery after treatment Links How To Divert Your Thoughts Away From Cancer Vlog

Here is what is covered in this episode: Treatment is tough and it’s important to tackle cancer on every level Mental: to deal with pressure of balancing life and treatment, staying on top of your worries, doing more things that bring you more fun and joy over the long term Physical: being prepared for treatment to speed up recovery, managing side effects better when you know what to watch out for early on, setting yourself up for better life after treatment Social: how to get people in your life to support you on your terms and supporting those people you care about most by being honest and direct about what’s bothering you and what you need Links How to Stay on Top of Life During Treatment Video 

Look, I know that supporting someone you love through cancer can really be the toughest job in the world.  Not only do you have to support them through it, but you somehow have to try to find a way to deal with all the craziness and the uncertainty yourself.  Today, we get to hear what it’s like to be a caregiver from Honore, who went on this extraordinary adventure of supporting her husband through cancer.  Here are some things that we cover today: The shock of cancer diagnosis in your 20s The tough challenge of switching roles as a caregiver Top advice on keeping life and treatment apart How to deal with stress and uncertainty when your partner has cancer The importance of keeping to new rituals and much, much more! Links 128 Days & Counting: Website and Blog 128 Days & Counting on Amazon 128 Days & Counting on Goodreads Episode 015: When Your Loved One Has Cancer Full Transcript Joe:                What was your life like before cancer? Honore:            Life before cancer feels really simple now.  My husband and I, Tom, we were married three years.  We had been together just over six.  We were in our late 20s, establishing our careers and enjoying the opportunities of travel.  We were at that age where every weekend was a wedding or a bachelor party or a bachelorette party.  We were just in that time in our lives where we were constantly moving and really got to enjoy those first couple of years of marriage.  Things were great.  It came so abruptly that that time in our life just seems foreign now. Joe:                 Absolutely.  How did you first find out that Tom had cancer? Honore:            We were actually very fortunate.  Tom was having a weird cough and some pain in his chest.  He didn’t really think anything of it.  I remember him coming up the stairs that night and just making a face a little bit and pushing on his chest.  He said something just felt weird.   We thought, okay, a cold is coming or something like that.  It’s September, all the back-to-school stuff and we went to sleep that night and about five o’clock the next morning, I woke up and he was putting clothes on and he was getting ready.  He said he needed to go to the hospital.  Fast-forward an hour or so later, and he had an x-ray and they saw a shadow in the mediastinal, so in his chest. From that, they sent him to a CT and there was a baseball-sized tumour sitting in the centre of his chest, essentially, in the mediastinal.  What was causing that chest pain for him was the fact that the tumour was touching his heart.  We were actually in a way very fortunate because it mimicked symptoms that you don’t mess around with.  You go into the ER when you’re having chest pain like that. Where some people who had gotten this type of cancer in their abdomen and it takes longer to diagnose because you just think you’re having a food allergy or something like that.  We were very fortunate in a way that it was in his chest.  We got to the hospital a little bit 6:00am, by three o’clock that afternoon, we knew it was a late stage-three cancer.  His particular cancer was a non-seminoma germ cell tumour, which is a rare form of testicular cancer. Joe:                 Yes, wow, it’s just such a shock, isn’t it, because you just never see it coming.  What was the first thing that went through your mind? Honore:            That I would wake up.  It’s funny because naively, in a way I woke up out of a dead sleep to Tom saying, “We need to go to the hospital.” There’s an element of that that I honest to goodness thought I was in a dream.  I would wake up, it would be okay, I would wake up, this is just one of those really vivid dreams you have.  Unfortunately, not.  Once I accepted that reality in that day anyway, I think it took long to truly accept our reality, but knowing that I wasn’t in a dream, unfortunately, what you think of is every bad story you’ve ever heard about cancer and the financial impact it can have. Are we going to be able to keep our home?  Can we figure out these treatments?  Is this a diagnosis that’s going to allow us to have a chance at the future beyond this?  Unfortunately, my head went to all of those pieces because there are so many unfortunate cases where you don’t have positive outcomes.  That’s all of a sudden, that movie reel plays in your head of all of those stories and circumstances and news articles and all of those things that you’ve read before. Joe:                 That’s so true and my mind goes back to what you said about hoping to wake up from this dream.  It does that a while to properly sink in, doesn’t it? Honore:            It does, you’re in shock.  You’re absolutely in shock.  Not only are you in shock, you have to make a ton of decisions very fast.  You don’t even get to sit for a minute with your own thoughts.  It’s… here are a bunch of facts, now here are all the decisions you need to make.  By the way, you might need to make them within the next 24 hours because we have to start treatment, or we have to get this doctor lined up.  I would argue there were some days where it still felt like a dream. Joe:                 Yes, absolutely.  I really connected with your story, as well, because I remember when I was going through treatment, that I think my wife and my mum, they were probably under even more stress than I was.  I guess the way I look at it is, when you have cancer all the spotlight is on you, right?  You’re going through it, but at the same time, your partner has to be the rock that’s supporting you throughout all the craziness and uncertainty and through treatment.  You also have to maintain some semblance of normal life and do the things that you normally do.  What’s your experience been like as a caregiver? Honore:            Yes, you nailed it.  It is hard because the spotlight is on that person.  You feel like you’re the puppeteer making everything happen around that person.  The day that he was diagnosed, and I talk about this quite a bit with people, is our roles changed.  We were still husband and wife, but we were also caregiver and patient.  With that comes a different dynamic.  When we were just husband and wife, I wouldn’t tell my husband, “You have to do this.” There were days where I had to say, “You’ve got to do this, you’ve got to take this.  We’ve got to do what the doctor is saying.” Your role shifts. That’s hard because you want to keep your normal, but the reality is, you’re in different roles.  That normal is something that you are anchored to and you hold onto, but that’s not your day-to-day anymore.  That’s really tough.  It’s finding normal within that.  We found temporary normal, like when we were in the hospital, we would take a walk every night.  We took the same route and we’d make the same goofy faces and say hi to the same people. You find these little rituals and these traditions in these terrible times because you’re clawing for any sense of normal and any sense of this can be happy, we can find happy moments in this, we can laugh, we can do that.  That was part of our normalcy.  Our normalcy was having fun and choosing to be positive, you lose so much of that that you try to find those moments.  I think another thing we did from a normalcy perspective and for Tom’s sake, all of his medications, I had an entire table of medication that he was on. A chart that I found of what he needed when.  I put that in our office room in our house and I would shut the door and I would keep everything in there because I wanted everything else in the house to feel normal.  I didn’t want ten medication bottles on the bathroom counter and five in the kitchen, and have the stuff spread all over the house.  I wanted that normalcy to be when we were in our home.  Other than that, one room, we were still husband and wife, and this was still our home.  That helped keep us both – I could still be his rock and do that for him, and he could power through the hard days. Joe:                 Yes, that’s such a fantastic advice you’ve got, this whole cancer room.  I heard that people even have roles for when to talk about cancer and when not to talk about cancer.  What’s your perspective there? Honore:            I think for us, we didn’t necessarily have rules, but for us, I think I would have hated to put restrictions on it like that because there are moments where you feel like you need to communicate.  I will tell you, any couple that will go through this would likely tell you that communication is key.  To me, if we had put those restrictions on it, if he’s in a moment where he feels like he needs to tell me he’s having a really bad day, I don’t want him to hold back and think, “We’re not supposed to talk about that today. Or I don’t want to upset her.” I get why people do it, for sure, but for us, I think it was really important to keep those open lines of communication and I think we always had that card to say, if we need to have a hard conversation, we’re going to have it when we’re both ready, whenever that is. Joe:                 Yes, I completely agree with you.  I think it’s such a huge point to make that I think that there are points in particular during treatment, that I didn’t feel like saying how I really feel because I didn’t want to get my wife or my mom more worried and more worked up.  I got to thinking that it did more damage, really.  I think when I started to really open up about it and to be just more direct, and just honest about it, I think it just helped everyone because everyone was in on it, everyone knew exactly what was going on. Honore:            Absolutely.  I remember, I finally had to say to my husband, and Tom was wonderful about communicating, but the same thing, the person going through the cancer already feels such tremendous guilt, they don’t want to add that onto the day.  I remember saying to him, “I am managing everything right now.  I’m happy to do it.” I’m balancing work, I’m balancing all of our appointments, our life, our finances, everything.  I can’t add mind-reader to the mix, you need to tell me how you’re feeling.  If you add that layer, I’m going to burn out, I can’t.  I need you to communicate with me what you need and be open about it, so I can adjust accordingly and make sure I can do that for you, but I can’t read your mind. Joe:                 Yes, exactly.  Mind-reading is not on the job description. Honore:            No, not in the official caregiver description for me anyway. Joe:                 Exactly.  I think that comes down to also helping you to stay more positive.  It’s tough to deal with things because you’re always on edge, both of you, both yourself and your partner because you’re always waiting either for results or you’re waiting to see if the treatment has worked, or you’re waiting to hear from your specialist or your nurse.  What are some of the other things that have helped you to stay more positive through the role? Honore:            For us, I think we’re both goofy people, we always joke who’s funnier in the relationship.  We’re just light-hearted in that way.  We always said laughter is the best medicine.  We really try to find those moments where we could laugh or be goofy.  For me, and part of the reason I started blogging about our experience, was one, to keep family informed, but actually writing became a huge stress reliver for me because there was so much going on in your head and in your mind.  Just to write it down.  For Tom, there’s a lot of memory loss almost during chemo, chemo-brain is real, very real. In addition to the fact that your body is in shock and all of that.  He actually didn’t remember more than I even though how much he didn’t remember from that.  Being able to write that down and channel that in my stress and put it all down also served a dual-purpose because he read it back eventually.  He was like, “I didn’t even know that happened.”  I’m thinking, are you serious?  That was such a pivotal day.  To me, that seemed like a big deal.  It wasn’t that he obviously intentionally did it, it was just that wasn’t a memory that was retained for him, with all of the drugs and all of the stress of that. For both of us, I will admit, as any caregiver, I resisted therapy.  In head, I thought, my husband was diagnosed in September and I did not bite the bullet until January.  I wish I had done that sooner.  I don’t know why.  I have nothing against therapy.  A dear person that I know, and love had said to me, “You break your arm, you go to the doctor.  You have a broken bone.  If your brain is not working, or your brain is struggling to comprehend the trauma and the stress of everything you’re going through, you go to a therapist.” I heard it like that and I’m thinking, duh… okay. It was that ah-ha for me of, we need help, this was a lot, this was a ton of stress on me.  Like you mentioned earlier.  More importantly, how do I help Tom through his stress?  Again, as a caregiver, you never really turn that piece off. Joe:                 Exactly.  I think that a lot of people, it doesn’t occur to them and it didn’t really occur to me at that time to go and see a psychologist or a psychiatrist or a counsellor, whatever.  It’s because you don’t really think about it like that because it’s cancer.  It’s supposed to be hard, but it’s really not.  I think the more that you can do for yourself, I think it’s a really fantastic thing.  What you’ve done is really go to see someone and find a way of dealing with it. Honore:            Absolutely.  Tom, he saw a therapist, as well.  In his case, and I do advocate for this for cancer patients, especially, and I don’t know about your views on this.  For him, he said he would go, but he wanted to wait until he went through treatment because he wanted all of his energy and everything to get through treatment.  I think even at the time, he was still in shock.  I think finding the right time of when you get those interventions are really important. To just do it because you think you need to do it, versus when you’re open and ready to have that conversation and really work through the trauma of it and how abrupt things happen and all of the changes in your life, I think it’s super important. Joe:                 Yes, absolutely.  I just think it’s important to use every tool you can to help you deal with this experience.  For me, it was definitely like an online support group, just going to a forum for testicular cancer and being able to ask questions and to hear from real people, advice and support.  It just makes such a huge difference because no matter what sort of support you have, I think both as a cancer patient or as a caregiver, there are definitely times when you feel like you’re alone, when you feel lost and confused, right? Honore:            Absolutely.  I think part of my issue, not issue, but something I wish I had realised earlier was, I found myself pulling away in those alone moments wanting to reach out to people, because I didn’t want them to have to take it on either.  I didn’t want to have to call my best friend again and be like, “I’m having a rough day.” In my mind, I’m like, am I jeopardising these friendships and relationships because my life is so chaotic?” I didn’t want that.  It’s hard because you’re right, you have those moments of loneliness and sadness, then you also almost don’t want to share it with anyone because our whole life was lonely and sad at the time, you know?  You don’t want relationships to change, and they do, it’s inevitable. Joe:                 Yes, exactly.  I think sometimes you also want to hear stories from people who’ve been there, to know that there’s a light at the end of the tunnel, to know that other people have gone through it.  I think I want to really jump into what you talked about, people in your life, your friends, your family, how did they support you?  Did they really support you in the way that you wanted to be supported? Honore:            We had hands down, we have the most wonderful family and friends.  We had so much support.  So much so that that’s actually part of the reason I started blogging, is I knew how many people would want to stay informed on what we were going through.  I knew that I couldn’t also add communicating with hundreds of people to my list of to-dos, so I figured if I could do that in one channel that would help.  It’s a great problem to have.  I will say, for me, one of the biggest lessons I learned is you have to be clear on what helps means. What somebody might think is helpful, actually may or may not be for you on that day.  Part of that was on me and I wasn’t thinking.  There are elements for people.  There were definitely times where people were doing stuff where I knew it was more helpful for them to feel like they were helping us, than perhaps it was helpful to us.  That’s okay because people just feel helpless.  Especially close family and friends, they don’t know what to do to help.  I found that people being specific.  I had somebody text me and say, “Hey, is there anything I can do?” “No, we’re good.  That’s my answer.” First, it’s somebody saying, “Hey, I’m at the grocery store, can I grab you anything?” For me, as the caregiver and for Tom, you feel such tremendous guilt already that people are doing things for you.  To know that they were already at the grocery store and that wasn’t an inconvenience for them, and they could actually bring us food, things like that.  Being specific in how people can help you, or how you can help somebody I think goes a super long way.  I also think it’s on that caregiver and patient to actually say, “Here is what is helpful for us.” Then figure out who can help you with those pieces of the puzzle, so you can get the support you need. Joe:                 Yes, you make a fantastic point, that people should be more specific when they offer help because you don’t want favours, as well, you just want people to do something that they’re comfortable with doing.  How did you make it clear for people that these are the things that are actually going to be really meaningful for you, they’re really going to help you in a way that’s really right for you? Honore:            Well, to be honest, it took me a minute to figure it out myself.  That’s hard, the knowing.  The reality is, what’s helpful on one day maybe isn’t helpful the next day.  It could be, I remember when Tom had his surgery, I thought I’d be able to bring him home and quickly run out to the grocery store and grab what we needed for a while because we would be in the hospital for a week, so it’s not something I could do ahead of time, the food would have all been spoiled.  I remember that was right towards the end.  This was not like my personality to ever, and I texted my sister in law and said, “Can you do me a favour and grab these five things from the grocery store and just toss them in the house?” She knew my garage code. That’s not something I ever would have done before this happened.  I would have been like, hey, can you go run for my groceries for me?  Just asking and knowing some people would reach out and say, “I don’t know what I can do for you now, but here are the different things I can do.  If ever you need that, call me.” That’s super helpful.  I knew that I had family and friends around here who have small children. I’m not calling them at eight o’clock at night to help with something because I know they have small kids and they may not be able to leave their home.  It’s always knowing what people are willing to help you with and then knowing when you can do that.  For me, still, it was very hard, I don’t think I did a perfect job at it at all.  Of course, I got good at it towards the end when we were really in the struggle.  I do wish I had gotten better at just asking for the help we needed and being very upfront about what would have been helpful. Joe:                 Yes, it’s a learning experience you don’t want to have. Honore:            Right, you don’t want anyone to feel like they have to do something.  You already feel guilty and when I did ask people, I felt, I hope that’s okay, I hope they’re not mad, I hope I didn’t inconvenience them.  It’s just my nature.  I feel bad about those types of things.  It’s hard, you don’t want to be in that situation.  You feel so vulnerable. Joe:                 Yes, absolutely.  It’s hard to deal with check-ups because you’re worried that the cancer has come back.  How does it work for you now, like, for you and your husband? Honore:            Those are really rough.  We are still on a three-month cadence because of how aggressive his cancer was.  It’s a roller-coaster.  The week leading up to it is not our strongest week when it comes to sleep.  It’s that old saying of there’s just an elephant in the room.  Going back to being open communicators and trying to deal with all of it, nobody wants to talk about it, nobody wants to be the one to say I’m worried.  You don’t want to cast any doubt, you want to stay positive, but you also have to prepare yourself.  I think in our case, for how abrupt his cancer came out, our nature now is to prepare for that ball to come out of left field that you aren’t expecting.  How do you manage that and stay positive?  It’s tough.  It’s super tough.  I would say we have a silly ritual.  There’s a greasy diner on the way to the hospital that we always have breakfast. We get up early and go have breakfast before we see the oncologist and get the results, because that’s just our half an hour where we can take a deep breath and the day is actually here and we see our doctor and they’re just wonderful.  I think a big part of the challenges we have with that is, it’s really hard to go back into those spaces that have become so comfortable.  It’s hard to sit in the waiting room when you’ve got people from all different stages of their cancer battle. I remember right in the heart of Tom’s treatment, we were sitting in the waiting room and somebody was coming out and the receptionist said, “Okay, we got to schedule you for six months’ out.” Tom turned to me and said, “I wonder if I’ll ever be able to make that appointment.” In our world, at that time, we were there every other day.  We were there for treatment, we were in hospital overnight.  Just being back in the environment, you feel sick to your stomach.  Everything just seems like you have to remind yourself that you’re not back in those days, you’re there for the check-up. I think beyond those weeks leading up to those scans, I think some of the hard days that people don’t realise for folks that have had cancer and are only a couple of years out, is those are really hard weeks, but also what’s hard are those random colds, or that random pain, or the thing that happens on a Tuesday and you have to convince yourself that it’s just a headache and that he’s okay, and that all he needs to take is some Excedrin or something. Those things are strangely hard because you immediately put your guard up because you don’t want to get caught off-guard again.  Those days are hard within those three-month periods for us, of going back to the doctor. Joe:                 Yes, I’m so with you on that one.  Like, yes, it’s the little pain or ache and your mind, the first thing it jumps to, it’s cancer.  Whether it’s a headache. Honore:            Yes, it’s back. Joe:                 It’s back, yes, exactly.  I love the point you made about the little rituals.  I think we would do that in our hospital.  There’s this little café with a little garden.  We always go there for coffee there.  Yes, I really get you, you get used to all of these ways of doing things where you’re comfortable.  You want some certainty, right?  You want any bits of certainty that you can click to in this age of craziness and things that just come out of the left field. Honore:            Yes, and we’re so used to – we’ve become a society that is so used to getting information so quickly and on-demand.  It’s sometimes strange to have to wait.  Just tell me.  Can’t I just look this up on an app or something?  There is this extra component, the way the hospitals operate and the waiting between days for appointments where he would scan and do bloodwork the day before and we’d come in.  It just doesn’t jive with how the world operates now, which is so fast-paced.  You’re also out of your element.  There’s got to be a way of getting this answer right now, come on.  Siri can tell me. Joe:                 Yes, exactly.  Siri, is the cancer back?  One thing that’s always bothered me is that whenever you go to give your bloods or you’re going for a CT scan or x-ray, it bothers me that the person who decides your fate, the person that looks at the records and does the test, you never see them.  At least you can talk to your oncologist or you can talk to your urologist, whoever your specialist is.  The person who’s looking at the test results, you don’t know who that is. Honore:            Exactly.  You’re hoping they’re having a good day.  There’s human error.  There’s an element of it and there’s something about seeing the person and knowing, okay, they were engaged in their looking and all that stuff.  You hate to doubt them because you know they’re doing their jobs.  There is an element of human error in all of those test results.  It’s natural, you wonder. Joe:                 Yes, you wonder, what if I came to work with a hangover? Honore:            Right, it happens.  On the morning of Tom’s surgery, our surgeon came in and he was wonderful.  I said, it’s awkward and I’m trying to lighten the mood, I said, “Are you feeling good?  What do you do?  Do you stretch out in the morning of surgery?  I don’t know.” He says, “Yes, I got up and ran at four o’clock this morning.” I’m thinking to myself, why weren’t you sleeping?  Go back to sleep.  Why were you up?  You know you’re doing surgery on my husband today, right?  Yes, you hope they’re having a good day. Joe:                 Yes, absolutely.  You know what?  For me, cancer has really just changed my world completely.  It’s changed the way I look at things, my priority, the way I live my life.  Did you go through a similar experience? Honore:            Absolutely.  I think people sometimes don’t realise it happens both for the patient and the caregiver.  I think there also becomes this element of the pressure to dramatically change your life when something like this happens.  The reality is, my husband had to go back to his job, I always joke, it’s not like we were going to sell everything and go buy a cigar shop on the beach the day after.  You have to recover.  You have to get through the trauma.  You have to financially recover.  You have to feel confident that it’s all gone and it’s not going to come back, and you have to get through those scans. I would say absolutely, though, we make decisions differently.  Before cancer, for the most part, you can’t predict the future, I knew that if I did X, Y would happen.  We have X amount of dollars saved, we can afford this, we can go on this trip, we can do this.  There’s an element where your future feels less predictable because there’s always that little voice in your head saying, “Yes, but… Yes, but…” We make decisions differently perhaps that we may have not taken that chance on something, or we’re going to take that risk that we wouldn’t have otherwise taken. Or we say, to heck with it, we’re going to drive eight hours to spent four hours with somebody and turn around and drive back.  You know what’s important, your priorities change.  The things you do and who you spend time with and how you spend your money absolutely.  I do think that probably for us, especially, continues to happen more over time.  I always say, I’m sure there are decisions that we didn’t even think we had to make yet that we will make differently because of everything that’s happened. Joe:                 What about your book, did that help at all, as well? Honore:            Absolutely.  The book, for me, was really hard.  I was writing that.  Tom and I going through it, for me, to your previous question there, Tom had this whole pressure on what did he want to do with his life now?  Is this the career he wants?  Same with me.  I remember, I worked throughout all this, but I remember thinking to myself, and I’m a very career-driven person.  Is this what I want to do?  Does this matter?  There are days you’re sitting there and you’re going, everything that’s important to me is outside of these four walls.  I care about my career, I care about doing a good job, but the things that matter most are there. You have that element.  For me, the book originally started from my blog.  The blog kept increasing and the link kept getting shared.  By the end, I was actually getting quite a few hits per week.  That triggered a response from me.  There’s not a resource like this out there.  There’s not something from the caregiver’s perspective.  I was looking for it.   I was looking for it when he got diagnosed.  Somebody tell me, how do we get through this?  What do I do?  How do I support him?  For me, I saw that the world needed this.  I felt strongly that I wanted to put this out there.  To your earlier point, the book is very raw.  I’m brutally honest, I don’t sugar-coat it.  I felt that was a disservice to anyone that would be going through this.  For me, that was a tough decision to make, and changed my priorities in the sense that, do I want to put this raw personal story about this out there about our cancer experience? About our family?  These are things that you don’t usually walk around and have cocktail conversations in a difficult setting.  We really put ourselves out there.  For me, you go through something like this and you realise that, if you don’t take this and if you don’t help the next person or do something as a result of it, there’s an element that you’ve missed an opportunity.  I think there’s a real gift in being able to get through these and give back. Joe:                 Yes, absolutely.  That’s so fantastic because I think it’s definitely something that can help every cancer care giver out there, just to get practical advice on what to do.  Also, knowing that you’re not alone, you’re not the only person going through it.  There’s hopefully a light at the end of the tunnel.  This new normal that everyone talks about. Also, I think it’s important to read for cancer patients, as well, to know what it’s like for the caregiver, for someone who sticks through it with you, who even has slightly different challenges to what you’re going through, so that you can really appreciate that and keep those communication channels open.  So, that everyone is really on the same page.  Right? Honore:            Absolutely.  I think what’s been interesting is the book’s been out for about a year.  Of course, in my head, this is the logical audience of people, like you mentioned, of people who have cancer, so they have a better understanding of the people that support them, family and friend who are trying to support them going through a cancer diagnosis.  What’s been so interesting is there’s been this whole other group of readers that have said, it’s a love story.  The story about hope. This intentionally was written not just about cancer, I don’t want cancer to always dominate the conversation because for so long it felt like that was the only narrative we had.  For me, to incorporate stories of our life before.  I mentioned in the book about goofy stories that happened to us before cancer.  I love that was one of the first questions you asked is, what was it like before cancer?  There’s a reminder to me that in a strange way, life finds a way of preparing us, even if we don’t know that at the time.  I was very deliberate in making sure that while this is a story about our experience of cancer and being a caregiver, there’s so much more to the story than just the cancer, because there’s so much more to anybody going through cancer, or the caregivers. It can feel like it’s dominating everything about you, but it’s just a small piece of you and you will regain that composure and that reality back.  It sometimes feels like it’s going to take a while, but you can do it.  That’s been really awesome for me to know that the story can resonate with people, even if they’re not in the thick of this. Joe:                 Yes, that’s so true because you are so much more than this cancer.  How would someone go about finding your book? Honore:            Yes, so the book is available on Kindle.  Then on our website which is: 128daysandcounting.com.  Also, on Amazon.  His cancer from diagnosis until the day we found out he was cancer free was 128 days.  I intentionally put the “and counting” once I started writing the book because it became very quickly clear to me that the cancer-free was not the finish line, it was actually the starting point. Tom went through a really rough battle with depression and PTSD and puling all of those pieces back together, because it’s a lot to undertake.  I always say that the and counting is the most important part because to rebuild and get your life back.  Going back to what I said, it’s getting back to our regular roles of husband and wife.  That’s a real transition.  That’s how the name came about and that’s where you can find us. Joe:                 Fantastic.  Thank you so much for your time.  Thank you so much for sharing your story. Honore:            Thank you so much.  It was so great to talk to you.  

In short: Resilience is not about being positive… It’s doing your best to work around things that get in your way! And you need the ability to recharge it during the many ups and downs throughout your cancer adventure But where do you find it – I believe that it has to come from people in your life your life is in danger you don’t know what to expect or how things are going to turn out, so this is truly the time when you need your people the most It’s makes sense to Accept that you should not deal with cancer on your own No need for drama – just being straight up and honest and direct about what’s going on for you People in your life want to help, but they don’t know how – guide your people on what they can do to be there for you to get support on your terms This support is now integrated into your life when you have real conversations They are going to feel included and they are going to be grateful And there are going to be people who won’t step up even you made it very clear about what’s going to help you Let them be and Move On – focus on those who stayed Support from people you care about is going to pull you up instead dragged down by worry and uncertainty Links Emotional Resilience During Cancer Treatment

In short: Some people in your life go missing just when you need them most There were people who let me down cancer treatment that put me on a quest to find out why Having collected and analyzed hundreds of reasons people have provided, I can share with you 3 top reasons why people fade away during cancer Reason #1: Their own fear of death and dying gets in the way of supporting you when it’s easier to turn away from Reason #2: People don’t want to offend you by saying the wrong thing so they do the worst thing possible, which is nothing at all Reason #3: It can be hard to notice sometimes that we can grow distant with people and be close friends in name only and it may take a disaster like cancer to bring that to light To get the support you want, it’s best to explain to your people exactly what you want from them to be there for you Those who truly care about you will be grateful for giving them the opportunity to support you on your terms Send an email with a list of practical things that people can volunteer for Links 3 Reasons Why People Disappear From Your Life During Cancer Vlog  

When it comes to making decisions about your cancer treatment, you expect your specialist to have all the answers so you know exactly what you need to do, but often, that’s not how things turn out. You may have different treatment options, each with its pros and cons. All of a sudden, you have to make life and death decisions over things you don’t really understand… So how do you go about making a decision that is right for you? This is what I learned from experience that may help. In short: You expect your specialist to lay out the treatment step by step, but often, there are you are the one deciding which road to take Yes, it’s scary because you are asked to make life and death decisions over things you don’t even understand… But it’s also empowering because you now in charge of your life again, you are empowered to decide which road to take going forward Your specialist guides you through the process, but it helps to dig deeper to understand what’s really going on under the hood Search for each option on a reputable evidence based website like Cancer Council in Australia Now that you know the facts, ask cancer survivors for their experience These folks went down that road before, gone through those treatment and had to make decisions like the one you need to make right now Find the right forum with my Online Community Guide under the Tools section on SimplifyCancer.com When you combine expertise and facts with real life experience and know how, you can make informed decisions about treatment There is no such a thing as the right decision so make a decision that’s right for you in this point in time Whatever decision you make is bound to be the right one for you right now! Links Making the Right Decision About Your Cancer Treatment Vlog  

Waiting room hammers home the reality of cancer – yes, this IS actually happening, and it’s happening to you, of all people! Your entire life turns upside down when you are confronted with the ultimate uncertainty… But when you are prepared for what you need to bring with you and what you want to take away from your appointment, you create confidence for getting yourself through treatment in the best way possible. Here are some things that I am going to discuss in this episode: When it comes to oncology, it takes a lot of effort to not only become a specialist, but also to stay in this profession As an oncologist you are required to stay up to date with learning and latest research The advice you are getting is based on best practice from around the world You can I trust that they know what they are doing, trust the advice you’re going to get, trust that there are solutions to most problems If there is trust, then you can ask any questions you want and have the confidence you are going to get right answers for you Come prepared by asking questions about worries that are bothering you and fears that keep you up at night Make notes about answers and ask your specialist if it’s ok to record the conversation for reference Bring a friend to take mind off cancer and crosscheck any information later When you’re prepared for your oncologist visit, you can remove away so much of your stress and worry Links Taking the Stress Out of Your First Oncologist Visit Vlog  

In her quest for life, Petrea has come through cancer to really find herself again.  She has discovered a unique approach to find peace of mind during the craziness and the certainty that comes with cancer. Here are some things we cover today: Finding peace of mind during cancer Responding rather than reacting to crisis situation How commitment to living makes you more resilient The best definition of forgiveness you are likely to come across 4 key characteristics that help you get through cancer The path to forgiveness and freeing yourself and much, much more! Links Quest for Life and Petrea King Programs and Workshops Petrea King Books Quest for Life – A Handbook for People with Life-Threatening Illness Spirited Women (for women with breast cancer) Your Life Matters – The Power of Living Now Petrea King and Quest for Life Foundation Episode 036: How To Be More Resilient During Cancer with Michael Carr-Gregg Full Transcript Joe:                Petrea, the first thing I really wanted to ask you is, when did you first come across cancer? Petrea:             When I was nursing.  When I was 17, I went into nursing and so I nursed a lot of people with cancer at that time.  Also, before I went into nursing, it’s a much longer story, but I’d grown very quickly 23cm in one year and my knees had started dislocating when I was 13.  I spent three years in hospital having my femurs cut and my lower legs turned out and my tibias cut, and my lower legs turned in.  In those days, they’d just invented portable x-ray machines, and because my bones wouldn’t unite, they sometimes x-rayed me two or three times per week.  I think in hindsight, that might have been the reason why I developed cancer then in my 30s. Joe:                 Wow, what was that like? Petrea:             Which bit, being in hospital for three years? Joe:                 Well, being in hospital for three years and then getting cancer in your 30s? Petrea:             Well, when I was diagnosed, I knew something was wrong because I was covered in bruises.  I would bruise very easily.  I went to my doctor who referred me to another one.  When I had all of the blood tests, I was actually living in California at the time.  When I had all the blood tests, it came back as my white blood cell counts were completely skewed.  Then I had bone marrow biopsies and finally, I was diagnosed with acute myeloid leukaemia in September of 1983.  I was told that I wouldn’t see Christmas of that year.  My brother had just taken his life, as well, so it was a very painful time for our family.  I have to say, I didn’t feel like I fought for my life.  I’m a little bit against this idea of battles and fighting the disease and people lose their battle with cancer.  I just don’t think that’s helpful.  We use such a warm mentality and yet, this is something within our own body.  Being at war with a part of your body doesn’t sit well with me. Joe:                 That’s such a great perspective, Petrea.  How did you see it?  How did you react when you found out and how did you deal with it?  That it wasn’t that and it was a part of you?  How did you approach it all? Petrea:             Well, those three years in hospital as a teenager had given me a lot of time to focus on the deeper questions about existence that I was already preoccupied with.  Why are we here?  What’s the purpose of human life?  How do you know you’ve lived a good life?  Like a lot of people, I had a split façade where I had a highly polished one for everybody outside but had a very private inner life.  I’d also grown up with my mad, chaotic brother who was the one who did finally take his life.  He told me before he was ten that he knew that he had to take his own life by the time he was 30. That’s when I remember thinking, “I have to grow up really quickly, so I can look after Brendan.” That finally gave me a sense of why I was alive.  I was here to keep him safe.  Then I grew 23cm in a year.  That’s what caused the derangement in my bones in my legs.  Those three years in hospital were fantastic because I got out of school.  I never went back to school.  I got away from my gorgeous brother whom I adored but found very scary.  It got me out of having to be a teenager and grow up, because I just didn’t feel like I was ready to grow up at all. I lived with this very split reality of being someone intensely private and yet, keeping this highly polished façade for everybody else that I was okay.  After that, I was raped.  I got into drugs.  My brother attempted suicide several times before he succeeded.  I was crippled with arthritis, I used to walk with walking sticks or crutches in my 20s.  Then Brendan did take his life, that was a huge shock for all of us because in the last two years of his life, he was actually really happy.  We all went into being relieved that he was okay. I became a vegetarian when I was about 17.  I started meditating when I was 17 to deal with chronic pain.  By the time I was diagnosed at 33, I’d been a very strict vegetarian for 15 years.  I’d been meditating for 15 years.  I was already qualified as a naturopath, a herbalist, a homeopath, a yoga and meditation teacher.  It was downright embarrassing to have cancer when I was meant to know about health.  I did still have this very rigid divide between me as a private person and the façade I kept highly polished for everyone else.  I ended up, my mother flew to America, she brought me back to Australia.  I was pretty much bed-ridden straight away.  My daughter came and sat on my bed one day, she was seven.  She said, “Mum, you’re sick.” I hadn’t told them I had leukemia because I didn’t want people looking at me with coffin-eyes.  As if I was already dead.  My daughter said, “If you need to mediate to get well, I think you should go back to America”, where I was living in a community in California.  I ended up doing that.  From there, I went to Italy because the Swami that I was housekeeper and secretary to there was lecturing in Italy.  It’s a long story, it’s in my memoir now.  I ended up in this little cave outside of Assisi in Italy and that’s where my whole life ground to a halt.  It was a combination of being very sick of grief, of despair. Up until then, I had never cried.  I kept everything inside.  In the cave, I could no longer keep the tears at bay.  I wept buckets and buckets and buckets.  My first book was called: Quest for Life, but it really should have been called: Sob Your Way to Health.  I think that was probably a better description.  This old priest looked after me.  He didn’t speak any English and I didn’t speak any Italian.  For instance, the first night, he came down into the cave where I was, and he dragged me up the stairs and he sat me at a table.  On the table, there was a meal that he’d prepared for me that had meat in it. I hadn’t eaten meat for 15 years.  There was a big chunk of white bread.  I had been telling everyone, the whiter the bread, the sooner you’re dead.  There was a goblet of wine.  I hadn’t drunk alcohol or tea or coffee, nothing for 15 years.  I felt that it was more healing for me to be grateful for what had been lovingly prepared for me by a stranger, than for me to say, “I can’t have what you’ve lovingly prepared because of my belief system.” I realised I had constructed all of these beliefs to survive in my life. It was like leukemia and facing my mortality caused me to let go the structure of all the beliefs that I had accumulated and learned to trust life, which I’d never done.  I do it myself.  I had to learn to trust life.  It was very humbling.  It brought me to a very raw emotional state.  Where I just started becoming grateful for every breath and for sunshine, for butterflies, for leaves, for all the beauty that was actually around me outside in this monastery where I was living in, in Assisi. Joe:                 Yes, wow, that’s an incredibly story.  Really, having that shock of diagnosis come in, that kind of bridged the gap between the two parts of yourself, in a way, right? Petrea:             Yes, it did.  It shattered that façade and it allowed me to live a much more authentic life.  When I came back to Australia, I had all the blood tests done again.  This time, they showed that I had zillions of little baby red blood cells.  The doctors said, “Look, you weren’t meant to have a remission, so this one won’t last.” I said, “Well, how long might it last?” They said, “Well, maybe only a few days, maybe a few weeks.” I actually found that more challenging because by then, I had reconciled myself to death.  I had packed up my whole life in this little suitcase, all ready for the big trip. I had given my children away, all of my possessions.  I’d signed over all my assets to my husband.  I was all ready to go, but then the plane got cancelled.  I was faced with how much do you unpack the suitcase?  How much do you live with any kind of sense of certainty about life?  I rang a friend who owns a very large vitamin company here in Australia.  I had met him during my naturopathic days, when I was studying.  I said to Marcus, “Look, I’m meant to be dead, but I’m not.  I’m in a remission but they say it won’t last.  I’m a naturopath, a herbalist, a homeopath, a yoga, mediation… I don’t know what to do.” He said, “Forget what the doctors said and just go into practice as a naturopath.” Frankly, I didn’t really want to be a naturopath because I found the whole experience of nearly dying and dealing with grief and loss and a lifetime of trauma and chronic pain, I’d found that a very intense experience.  I did as Marcus said, within the first two weeks, the first woman with breast cancer came in.  The day after, the first person with AIDS came in.  They had both been told they wouldn’t see Christmas, which is what I’d been told 15 months before.  I felt like I’d met my people.  My tribe. My question to people has always been, what is it that stands in the way of you being at peace?  Now, sometimes it was pain.  Okay, let’s see what we can do with breathing, yoga.  I’m not against medicine.  I’m all for orthodox medicine, but there’s an awful lot we can do to help ourselves in addition to whatever we’re doing medically.  It might have been diarrhea.  I would educate them.  Okay, let’s leave out oranges, orange juice, fried fatty foods, fats, oils, alcohol, fried eggs, cheese, dairy products.  Those are the foots that will increase nausea and diarrhea.  Maybe use some slippery elm and some homeopathic. We’d get rid of the diarrhea.  Now, what is it that stands in the way of you being at peace?  Those conversations got ever deeper into those fundamental questions of: Who am I?  What am I doing on the planet?  A I living the life I came here to live?  If not, why not?  What am I going to do about that?  Those were the questions that I’d been facing ever since I was a little child.  I found those conversations to be very enriching.  What I began to see, in time, a lot of the people, I’ve worked with over 120,000 people now, through our retreats and one-on-one, which I don’t do now, but we have a very big retreat centre here.  In fact, just behind me, through the wall, there’s 22 people with cancer in a program this week with us. When I began working with people and they were beginning to find really this deep sense of peace within themselves, they just didn’t die on time.  If they were given a time frame, it’s always three to six, six to nine, nine to twelve.  Doesn’t only work in quarterly installments because they’re talking about a statistical group of people.  They’re never talking about you as an individual.  The people I was working with, some of them are still alive now, when they were given three months to live 30 years ago. I began to see that they had some characteristics in common.  That’s what all of our programs now are based on, are these characteristics that people have who are the ones that don’t die on time.  What I found, frankly, were that these characteristics were useful whether you were grieving, whether you were dealing with depression, trauma, loss, grief, anything, because they’re about peace of mind. Joe:                 What are those characteristics? Petrea:             Well, there are four of them.  They’re called the: Four Cs because each one begins with the letter C.  The first one is that these are people who regain control over their response to life.  This first C recognises when perfectly appalling, terrible, horrible things happy to lovely, gorgeous, fabulous people.  It’s fine to weep about it, rail about it, scream about it, write about it, talk about it.  Until you come to a place where this did happen, and it happened to me.  Given I’m in this situation, what’s an appropriate response, not a reaction? A reaction is always in the body.  If you think about a time when you were really reacting to something, people say, it’s in my gut or my heart rate increases or my breathing changes or my jaw tenses up, or my shoulders and neck get tight.  A reaction is a reactivation of a physiology we’ve experienced previously that we live again in the present moment.  If you to think about it, when you’re really reacting to something, if you were to ask yourself, how old do I feel right now?  We always feel like a little kid.  We’re literally reactivating the physiology of the four/five/six/seven-year-old and living it again as an adult.  Now, if we keep reactivating the same physiology in which your disease developed, why would it go?  A response takes you into new territory. We don’t say to people: Take receivability for your life.  We say: Take responsibility.  Your ability to responds to the things that are happening in your life.  That’s the first C, is recognising, where am I reacting?  As soon as you notice a reaction, find ways of settling that down.  You either need to excuse yourself from the situation, you need to take some deep breathing, you need to settle down that reactivation in your body, so that you can more appropriately respond, not react.  Otherwise, we keep doing what we’re always done.  Then we always get what we’ve always done. The second C is a commitment to living.  This is a little bit more complex.  A commitment to living is to have a deep reverence for your life.  To revere the life that you have.  Frankly, it’s amazing that any of us are alive.  We know that only ten percent of all of the cells in our bodies are even human cells.  The other 90 percent are bacteria and other kinds of little creatures that live in and on us.  This is a whole ecosystem that we’re in.  We can create a toxic ecosystem or a healthy ecosystem.  A commitment to living recognises that the opposite of death is birth, not life.  Life is indestructible, I’ve been with many people who’ve died and it’s obvious that someone leaves. For me, life is indestructible, love never dies.  That’s who we are in our essence.  This second C shows up in three areas.  It shows up in our priorities.  You’re not your body, but you have a body and you need to nourish it appropriately.  That means to put into and onto your body only the things that belong there.  Now, human beings have bene eating slow food, seasonal, local, organic, whole food for millennia.  We’ve only recently started interfering with our food supply and adding oodles of chemicals into our environment. The average baby born in the U.S.  today can have up to 200 chemicals in its cord blood when it arrives here, which are these persistent chemicals, which are now in the environment.  We need to get the chemicals out of our food, out of our cleaning products, out of our personal care products.  They do not belong in our body.  Given that the microbiome, you know there’s a kilo and a half of bacteria in our gut, they are super sensitive to these chemicals.  We need to get all of those chemicals out of our environment 100 percent. You’re not your body, but you do need to nourish it appropriately.  You need to rest it because we’re so into soldiering on.  Your body needs deep profound rest every night, but probably sometimes during the day, as well, if you’re unwell.  You need to exercise your body because it’s a whole system of pumps.  If we’re too sedentary, I’m at a standing desk, I like being at a standing desk, but if we’re too sedentary, then all of those pumps slow right down.  We need to exercise in a way that’s appropriate for us. We know now, there are lots of research to show that exercise on the day you’re having chemotherapy, radiotherapy is really important.  If you’re oncologist isn’t talking to you about exercise and diet, if you can, find another oncologist because they’re very important aspects.  You’re not your body, but you do have one.  You need to nourish it, rest it, and exercise it.  You’re not your brain, you have one.  The brain is designed to be in service to us.  We need to keep the brain focused in the present moment. When the brain is focused.  When it’s entrained in the present moment, we have access to insight, intuition, wisdom, humor, spontaneity, creativity, and compassion.  There are all present time qualities.  The moment the brain starts telling us stories about the future, where we fret, worry, anxious, or we regret blame, shame about the past, we create a physiology in accordance with whatever the brain is chattering at us.  We need to stop all of that chatter.  We need to keep ourselves in good company.  Don’t hang out with turkeys.  Not even the organic ones. Be with people who uplift you, inspire you, encourage you to move in the direction that you want to move in your life.  You’re not your feelings.  You have feelings and there’s a very big difference between I am angry, and I feel angry.  On a scale to zero to ten, I might feel like I’m an eight, but I might not want to speak from it, or act from it.  We need to have the capacity to witness ourselves having the feeling rather than just reacting from the feeling.  You’re not your body, you have one, you’re not your brain, you have one, you’re not your feelings, you have them. Of course, it begs the question, well, who are we?  For me, we’re consciousness.  For someone, that might be soul, spirit, life, being, energy.  If we want to find the peace that passes all understanding, we need to anchor our sense of self in that which is beyond change.  Your body will always change, even if you make it to 110, it will get saggy and baggy and wrinkly and grey.  Bits will fall off and not work.  You don’t want to anchor your sense of sense if your physical body.  The brain is so active all the time, you don’t want to anchor your sense of self in the fluctuating thoughts and feelings that you have.  To anchor your sense of self in that which is beyond change, is to anchor your sense of self in the energy, frankly, that surrounds us.  We know that the magnetosphere is around our body.  We know through magneto encephalographs, that thought actually starts out here before it even starts up in the brain. Who are we?  We think we’re our brain, although, when we point to ourselves, we point to our heart.  Actually, we’re in the field, we can live in the field where we can pick up all kinds of information and take good care of our physical, mental, emotional, and spiritual wellbeing.  I’m sorry, this is a little bit long-winded, but… Joe:                 Fantastic.  Please, go on. Petrea:             The second aspect of the second C, are issues around communication.  A lot of us are not in communion with ourselves.  We don’t even know what we’re feeling.  Nor do we have the capacity to communicate that skilfully to others.  I know when I was sick, I would walk down the hallway and slam the door behind me and think, “Surely, they know they’re meant to come in and find out what’s wrong.” Of course, I had to recognise that this is not really a very skilful communication, because, for me, to say I need, was a foreign language.  I don’t know how to ask for anything because that’s second nature to me, to do it myself. To go inside, not to ask for help.  It’s interesting to know that we call this second nature, we say, it’s second nature for me to think like this, feel like this, react like this.  No one ever questions, well, what’s your first nature?  What was there before you took on the beliefs, the anxieties, the limitations, the fears?  For me, cancer or any suffering gives us the opportunity of making the return journey back home to our first nature, our essential nature, and that’s where we have access to insight, intuition, wisdom, humour, spontaneity, creativity, and compassion.  They’re all present time qualities. We need to improve our communication with others because a lot of us don’t know how to have difficult conversations.  We need to improve our communication within ourselves.  The third aspect of the second C are issues of forgiveness.  That’s usually a five-day workshop, you know?  A lot of people use what happened in the past as an excuse for their behavior in the present.  We have to find a way of putting our wounds into our story.  It’s good to have a story but we don’t want to live out of the story all the time. I wouldn’t change anything in my story now, but it involved rape and drugs and my brothers’ attempts as suicide.  Finally, his suicide.  I married some very odd people.  I had two beautiful children.  I was in a domestic violence situation.  I had all that time in hospital, chronic pain, I still live with chronic pain since I had knee replacements a few years ago because they shattered all the ligaments in my hips.  We can have a story, but we don’t have to live out of that story all the time. Forgiveness it not about: I forgive you.  Forgiveness is actually an inner process, whereby, we liberate ourselves from the consequences of having felt wounded in the past.  We no longer reactivate in the present as if we’re still carrying any wound from our past.  That’s what forgiveness is.  I know that’s a nutshell version.  The best description I ever heard was actually at a conference in San Francisco, when a six-foot-five transsexual in a frock just a few seats along from me stood up and said, “I’ve just realised that forgiveness is giving up all hopes for a better past.” Joe:                 Wow. Petrea:             Yes, I thought that was fantastic.  It just is.  I could still be sitting in that little cave saying, “It’s not fair that I had a mad chaotic brother, it’s not fair – years in hospital, it’s not fair – rape.  Chronic pain, all of that stuff.” The day came when I realised, there’s no one to blame, there’s nothing to blame, which is incredibly disappointing, I know.  There’s no one to blame, there’s nothing to blame.  It just is the way it is.  Weep about it, write about it, scream about it, write about it, talk about it until you can have a story that you don’t live out of that story.  The third C is the sense of challenge. We have to make meaning out of the challenges that we’re having.  Illness, accidents, traumas, disasters, they don’t have intrinsic meaning.  It doesn’t mean something when these things happen.  If we define peace, we’re going to have to find a way of making meaning and some people make meaning out of their suffering because they become more compassionate.  Some people volunteer.  Some people go and help somebody else.  Some people change a law.  Some people do all manner of things which helps to make meaning out of their suffering. I ended up making meaning out of it by creating a safe place where other people could come and have their anguish and their distress received and heard and acknowledged.  Then we educate them about neuroplasticity and epigenetics and all of these amazing things, that show that we’re creative beings and that we don’t have to stay stuck in our story.  The third C is where we make meaning.  The pearl comes about in the oyster because something irritated the heck out of the oyster.  We mostly learn about who we are, what’s of value to us through our suffering.  Not when things are going wonderfully.  Then we need to find a way of making meaning out of it.  Rather than just rushing back to life and not learn anything from the experience.  The fourth C is our sense of connectedness. That’s connection to our own innate self.  It’s having friends, mates, people that we can be real with.  For some, it’s having connection to land, to country, to the seasons, to the cycles of nature, to the cosmos.  It’s having our sense of place and belonging in the world, so that we are not disconnected from ourselves or from other people, or from nature.  If you look at the opposite of those four qualities.  If you can imagine a person with cancer who feels completely out of control with their life and they can only helplessly react to everything that happens to them, as if they’re a helpless victim of their circumstance. That their commitment of living is all around, “I’ll be happy at another time when things are different from how they are in this moment.” That they’re not taking good care of their physical, mental, emotional, and spiritual wellbeing.  They are not in clear communication with themselves, not have the capacity to talk to anybody else in a meaningful way.  That they have no capacity to forgive and they keep festering on what happened in the past and letting that gnaw away at their sense of peace in the present. That all their challenges are overwhelming, and nothing has any meaning for them.  They don’t have any sense of connection to themselves or to anyone else.  I think it’s a good way of looking at the opposite of peace of mind.  That peace of mind is the presence of those four qualities.  It’s as much a physiology in our body as anything else.  Regardless of how challenging, how chaotic, how critical, how difficult a circumstance is, we know moment by moment, we can respond appropriately. We can do that because we’ve already taken good care of our physical, mental, emotional, and spiritual well being.  We filled up our own inner bucket and we’re giving from the overflow of that.  We’re in clear communication with ourselves, with others, had the capacity to forgive and let go what happened.  That every moment becomes a sacred moment.  Every moment becomes a moment of gratitude.  That we feel the powerful sense of connection to our own innate spirit, to the spirit that enlivens all of creation.  For me, that’s the definition of peace of mind. Joe:                 Wow.  That is incredibly profound.  I want to ask you, I know this is a big topic, but I want to ask you about forgiveness and what are some of the practical steps to forgive someone? Petrea:             Well, the first one, really, is wanting to because we get an awful lot of distorted pleasure out of forsaking through our wounds and hanging onto the wounds of the past.  We often think, if only the person could see my perspective, they would be so sorry.  They probably don’t even know they’ve wounded you, or if they’ve done it, they may not even care that you’re feeling wounded.  We don’t want forgiveness to be dependent on the other person understanding our perspective, or even hearing us, because it’s not about them.  It’s a wound that we’re carrying ourselves. Forgiveness is really a selfish thing that we do to release ourselves from the suffering of carrying this wound within us, where we lie awake, where we fester in it, where we forsake through it, where we try and add fuel to it.  Forgiveness often requires time and certainly, first, the willingness, maybe even to have to have someone there as witness to our story, so that they get us.  We all need someone who really gets us, who gets why we’re behaving, feeling the way that we are.  You may need to find that person who can hear the suffering that you experience. We may need to weep about it, talk about it, talk about it, rail at it, dance it, sing it, whatever, to get the energy of that moving, so that we release it ourselves.  Then it’s our story but we don’t have to be the story.  It’s good to have a story.  It’s our story that breaks us open to greater compassion, greater understanding and meaning.  Forgiveness is never ever, ever, ever about condoning.  It’s not about saying what happened was okay, it was not okay, but it did happen. Given the fact that it happened, do you want to stay trapped and give that person or that situation the power to destroy your peace for the rest of time.  Most of us want to be free of it.  Being free of it doesn’t mean that the other person needs to understand anything about your suffering. Joe:                 Also, what you’re saying is, there’s no simple recipe, it’s really a process that you have to go through to really get to where you want to be.  Another thing I wanted to really ask you was, one of the most difficult things about cancer is this constant waiting.  You’re constantly waiting for the next appointment, for the next test results.  How do you deal with that? Petrea:             I know.  When I went into remission, unexpectedly, every time a gland would come up in my neck, you know?  It’s back, it’s back.  Or, you know that you’ve got a blood test coming up, or you’ve got a biopsy coming up.  That’s why I think that learning to live in the present moment is really helpful.  That we can talk.  Maybe a support group is really useful.  I’m sure your podcasts, Joe, are really helpful to people, so that they feel like, “Ah, somebody else understands what it’s like to live in this space.” Often times, family don’t.  They don’t always understand what you’re going through. Hanging out with other people, your tribe, people now travel from all over Australia to come here to quest to – it always touches me so deeply that they travel from all over the country to find a safe place.  Sometimes from outside the country, as well, to find a safe place in which to utter their anguish, their story, to have it witnessed and heard and acknowledged.  Then they’re so open to being educated about all of things that they can do to regain control over their response to the situation that they’re in.  That waiting is part of – sometimes it’s appropriate to say to everyone, I’m having a cancer-free day.  I don’t want to talk about cancer today. I just want to hang out with family, friends, whatever it is, and be my usual self.  Having cancer is only part of your story.  You may also be a father, a brother, a son, an uncle, you have all of these other roles.  We don’t want to be the cancer patient all the time.  I’m just going to get a little picture off my wall here.  This little girl, Kate, drew me this picture of Garfield many years ago, she said, “I actually drew you two pictures.” She had cancer of the heart muscle, which I’d never come across before. She said, “I actually drew you two pictures, but I put them on my windowsill and the wind blew the other one away.” I said, “Well, what was in the other picture?” Well, she said, “It was exactly the same as this one, but the hearts were all shattered down the middle.” I said to her, “Well, maybe the wind was telling you, you don’t need to have broken hearts.” She said, “No, Petrea, you don’t understand.  Sometimes hearts have to break before they heal.” She said, “I’ll draw you another picture.” Which she did. Joe:                 That’s beautiful. Petrea:             Yes.  Often, we don’t want our hearts to break.  Just before she died, she reached out to the hands of her parents and squeezed them and said, “I want you to love each other the way you’ve loved me.” Such profound words.  I know they always bring tears to my eyes and to other people, too, because it’s a fundamental truth that we all know that what really matters is love.  We need to bring that love sometimes to ourselves because I hated myself.  In fact, I’m not sure where that picture is, but I have another little picture of friends who came to visit me in the cave. I couldn’t even look people in the eye.  I just felt so awful about myself that I couldn’t stand seeing anyone.  They left this little pile of worm food outside the cave with this little picture, which is the holy worm with a little angel on its side.  People loved me when I didn’t have any love for me at all.  Now, for me, to be able to create a beautiful space for other people, not just people with cancer, we work with many post-traumatic stress and depression and anxiety, loss, grief, all sorts of different forms of suffering because at first, my work was mostly with people with cancer because I’d just been through that experience. As people started telling me their stories, of course, I had stories about domestic violence and rape.  It’s not that you ever know what the other person is experiencing, but I know what that place of despair, that place of anguish, that place of fear and abandonment is like for me.  I’m not scared to have a conversation now about those things.  That’s very profoundly healing for people to know that.  The moment we can speak it, we’re already more than it. Joe:                 Absolutely.  How does Quest work and how can somebody find you? Petrea:             Well, they can always go to our website.  Which is: Questforlife.com.au.  I do a live mediation on Monday evenings and people tune in from all over the world through our Facebook page, so they can access the Facebook page through the website.  We also have once a month, one of our facilitators will touch on one aspect of the program and just unpack it a little bit more.  It might be forgiveness.  It might be dealing with difficult emotions.  It might be having difficult conversations.  All sorts of things.  People can tune into that live.  In fact, they’re all on our Facebook page, where people can go and connect with those at any time.  They stay there. People can revisit those.  I do regular radio interviews.  Hopefully, all of your people are asleep by then.  There are sometimes podcasts, as well, that’s through the ABC, which is a national broadcaster here in Australia.  I’ve been doing that for 18 years about having difficult conversations and dealing with emotions, all sorts of different things.  My books, of course.  We send my books all around the world.  I think Quest for Life, which is the handbook for people with cancer.  I know there are still second-hand copies available through Amazon in America, but we can always send copies from here.  I’ve written nine books, a couple for children, a cook book, my memoir. One for women with breast cancer.  One for people dealing with cancer or other serious illnesses.  One about where Kate’s story is.  It tells a story of 25 people, what we learnt out of the experience of facing mortality together. Joe:                 Well, thank you so much for the time for your insights.  Thanks so much for doing what you do in the world. Petrea:             Thank you, Joe.  Well, thank you, too, for what you do because I know that will make a big difference to a lot of people.  These podcasts are incredibly valuable for people.  Thank you. Joe:                 Thanks so much.  

Let’s be honest, it’s hard to be positive when cancer has turned your entire world inside out, but we can still look for ways to focus on things that make life a little bit easier, things that give you joy and sharing good times with people that you care about. That’s what we’re talking about today with Ros – she is a cancer survivor who is incredibly passionate about healing and wellness and wrote a book called: “Laughing at Cancer:  How to Heal with Love, Laughter, and Mindfulness”.  Here are some things we cover today: Reframing the way we perceive cancer Staying connected in these trying times The healing power of laughter and mindfulness and much, much more! Links Laughing at cancer LaughLife Wellbeing Programs CancerAid: Australia’s No.1 Cancer Management and Support App Episode 021: Laugh Your Way To A Better Life Despite Cancer Full Transcript Joe:                 Ros, what I want to start with first is, I want to ask you how did you find out that you had cancer? Ros:                 I had some mucus and blood in my stools.  As much as I was concerned, I wasn’t really alarmed because a couple of years before that, I’d had a Yardi Parasite, which we think we got from a family holiday in Thailand.  I just thought, “All right, I picked up another parasite.” I went to the doctor and I’d actually done a stool test and nothing came back.  Anyway, the symptoms just kept getting more and more, and the doctor, she didn’t know what to do with me.  She said, “Right, let’s just get you checked out.  I really don’t expect them to be able to find anything, but we’ll just do it.  Peace of mind.” I had a colonoscopy and woke up from the anaesthetic, and the gastroenterologist said, “You’re one lucky lady, we just removed a polyp, but all looks well.  See you later.” Joe:                 That’s a good start. Ros:                 Yes, well, there was no story then.   Then four days later, or five days, I can’t really remember, but basically, the gastroenterologist knocking on the door saying, “Really sorry, got that wrong, it’s actually really nasty and there are some cells outside that polyp.  Really need to refer you onto a colorectal specialist to see what your options are.” That’s what I did.  I went along to the colorectal specialist.  I had my 43rd birthday spent in his consulting suite.  I was essentially given three options.  One was, to do nothing more and to just keep my fingers crossed that the cancer hadn’t spread. The second option was to do a partial bowel resection, which would have most likely dealt with the situation but again, no certainty because even with all the advances in medical technology, the only way to assess the length in the bowel, is to do a full bowel resection.  You can’t access the length any other way.  The only way that I could with 100 percent certainty know what we’re dealing with, was to opt for a bowel resection.  That entailed, because the polyp was in my rectum and very low down, it’s quite difficult for healing.  I was told I’d be getting a temporary ileostomy, so that bag that sits on the outside of your stomach for three or so months during the healing. Joe:                 Crap. Ros:                 Yes, crap on the outside.  Sorry, Joe, I joke.  I asked the question that nobody really wants to ask and once you’ve asked, you think, “Why did I ask that?” I said, “Do you have any idea as to how the likelihood or the percentage of the cancer having spread?” He said he didn’t, he said it could be two to three and then I saw another specialist a week or so later or within that week and he thought maybe three to five.  Nobody knew.  At the time, I thought, I was lecturing in health promotion.  Done a Master of Public Health.  I’ve done quite a bit of work with statistics and I hate statistics. When we talk about statistics, when it’s someone else and when it’s a population, one/two/three percent, it doesn’t sound that much.  That percentage sitting in me, with two boys aged 12 and 15, it kept weighting heavier and heavier and heavier.  The choice that I thought I wasn’t going to make, which was the full bowel resection, the ileostomy was the only choice for me.  I knew what anxiety or doubt would do to me over time. Joe:                 Yes, exactly.  That’s the other side, one is the medical adventures that you go through, all these decisions that you have to make.  How did you take it all mentally and emotionally, how did you react to it all? Ros:                 Well, I really liken it to just having just a ton of liquid led weights.  I just felt so heavy from head to toe.  It was just like totally overwhelmed.  Ironically, months prior, I had actually been asked to facilitate a party for a corporate business.  I was so excited, I thought, “Yay, finally hitting the corporate world.” As it transpired, this was scheduled three days before my major surgery.  I just thought, feeling the way that I was, how would I be able to get myself through this? I did.  I turned up and I almost lost it a couple of times, just pointed out some of the health benefits of laughter and then actually ran a laughter session. I was amazed that it was the first time since the diagnosis, which had been two plus weeks before that, that I actually felt lighter.  That I felt a lot more prepared to face what was going to be in the near future, a five and a half hour plus surgery.  It’s all-consuming.  When you do get bad news, it’s like darkness descends, the weight descends.  You just, at the time, just can’t shake it.  Maybe people can but it was a big one and totally out of the blue.  It’s not like my family had a history of bowel cancer.  Later in life, there were some little polyps and that, they were always found.  Nobody died of bowel cancer, I’ll put it that way. Joe:                 Cool.  Ros, there’s a lot of really unhelpful language around cancer, the way we talk about it, what’s your perspective on that? Ros:                 I’m really pleased that you asked that because it’s actually one of my pet – I wouldn’t say pet hates – but it’s something that I’m really conscious of.  One of the first things that I was really wary of was my boys hearing that mom’s got the big-C, that mom’s got cancer.  From the very onset, I decided that I was going to refer to my cancer almost like the little-c.  As far as I was concerned, until I had evidence otherwise, I had a malignant polyp in my bowel.  I contained it to a specific area as I possibly could, which enabled the rest of me to be in a state of wellbeing.  Far more empowering. When someone is given a label of a cancer diagnosis, it’s like the whole of a person has cancer.  The same could be said about someone who has diabetes, as opposed to being diabetic.  Or someone has a disability, as opposed to being disabled.  You’re actually empowering and emphasising the healthy and well side, which is especially important to somebody who really needs some healing happening.  I was really grateful in that it still remained the little-C.  Thank god it wasn’t terminal, then it would have been something, the language would have been different. To some people, it might sound semantic but for me, I knew that I would be able to recover from something much more contained and specific than a whole of cancer diagnosis.  It was something that I really wanted to, in terms of the kids and the way that they dealt with it, I thought it was really important for them that they also knew that mum’s just got something going on in her bowel, in this part of the bowel.  That really is so helpful. Joe:                 Yes, that’s a great perspective for us, because you’re really putting cancer in its place. Ros:                 Yes, well, as I say, it’s no different than anything else.  Like, why would you want to dilute the healthy aspect or put more emphasis on this negative thing than you need to.  As I say, contained and specific, and all being well, it’s nothing more than that. Joe:                 Yes, that’s very powerful, Ros.  In terms of people around you, how did they react, and did they support you in the way that you wanted to be supported? Ros:                 Again, it’s a good question because the reality is that whenever anybody goes through any form of adversity or challenges, unless you live by yourself on an island, other people are involved.  It’s really difficult, essentially, my role was mum first and foremost.  They were used to mum going and doing the shopping, the cooking, as well as working and etc.  All of a sudden, there was a lot more responsibly placed on other people in the family.  There was a lot of fear.  I think my husband went in to practical mode, what could he do practically to help? That was the first thing.  The kids, it’s hard, in terms of the nuclear family and who was around me, yes, I felt beloved, yes, I knew I was supported, but it’s too much almost for one nuclear family to deal with.  That’s where you need to know that you can’t get everything from one person.  You need to know, okay, if I’m not getting enough emotional support from the kids or whatever, is there a friend that I can call upon? What can I do to bring into my world the support that I need, rather than just lay back and think, “Shit, I’m just feeling so low, I don’t have the support.  My family just don’t get me.” In your own way, you identify what it is that you need and in the best way possible, try to communicate those needs.  Which I might just add, I wasn’t great at doing that.  I think that some people find it easier asking for help.  I might not look like it, but I’m relatively fiercely independent.  That can be really hard when you actually become dependent and you go from an independent role to a dependent role, to a person to a patient.  It really is a very emotionally challenging time. Joe:                 Yes, absolutely, Ros.  You’re so right about saying that it’s so difficult.  It is so difficult to ask for help because on the one hand, you don’t want to look weak, also, you don’t want to put some kind of a burden on someone else.  At the same time, for anyone who’s gone through cancer, there are times when you feel overwhelmed, miserable and alone.  You need to find ways to communicate to people in your life. Ros:                 That’s right.  The thing is, for me, as I say, I was 42 when I got this diagnosis.  Most people tend to be in an older demographic for bowel cancer.  It’s interesting because now through bowel cancer Australia, they’ve got a peer-buddy mentor system of which I am a buddy.  That didn’t exist at the time.  I just happened to have a friend who knew somebody, a friend of a sister, who lived somewhere in Northern New South Wales and was a similar age to me.  We actually became phone buddies.  That was really important because I could talk to her about things.  The things that you deal with, they’re not necessarily things that your husband wants to know or that your kids need to know. They’re just really tough, especially all things bowel and where the operation is going to be.  It’s very close to all of the female reproductive system.  There was just a lot of considerations and things going on.  Just to have someone that’d been through it and was at the other side.  I think that was really important to me, to actually have someone in my life at the time, she was six months advanced down the track to where I was.  She was a bit of a beacon of light.  Right, well, she has similar circumstances to me and look where she is now.  Isn’t that fantastic? That’s where I’m going to be. Joe:                 Yes.  Totally, Ros, it’s an incredibly empowering experience talking to someone that’s one step, several steps ahead of you.  I had testicular cancer, which is also a bit awkward because it’s down there.  It’s my balls, right? It’s been really helpful, when I was in hospital, it just so happened that I was put in the same hospital room with a guy who was also in the same situation.  It was really great to hear his perspective on what helped him deal with it in terms of managing his energy and how he responded to treatment and all of that sort of stuff.  Yes.  That’s something that I would highly recommend to anyone going through cancer, is to really find people who have been through it, whether that’s online, whether that’s in-person, wherever that can be done. Ros:                 Yes.  We’re both involved with CancerAid.  They’re trying to also create a community.  I think that it’s so important because it’s such an isolating, scary time, but the more you can connect to people and just feel like you’re not alone.  That’s interesting, I was actually just reading something about loneliness.  Loneliness is a subjective thing.  If you feel alone, even if you’re in a crowd of people.  Loneliness, over time, it’s really damaging on our health.  It’s equivalent to being a heavy smoker and it can make you 14 times more prone to chronic illness over time.  In the short spurt of time, with the loneliness and the isolation, in order to heal, you need to be in the best mental state that you can be. You need to feel that there are people around you that really care about you when you’re feeling lonely or alone, you might just feel that they don’t really get it.  They can’t get it.  You start to withdraw.  I think that’s quite a natural thing.  That is not a constructive way to empower healing and your mental state.  The opposite of loneliness and all of that negativity is actually tapping into a positive mindset, which is far beyond people saying, “It’s important to be positive.” Again, that’s something that I have some issues with because being positive is very passive. You need something active.  You need stuff to actually go from positive to positivity.  Positivity is where you can actually change the way that your brain functions.  You can change tapping into your happy hormones, your dopamine, oxytocin, serotonin, endorphins, all of those things, which really assist whatever else is going on.  Whether you’re having medical treatment, whether you’re going through emotional stuff, if you can tap into this positivity, it really just helps people advance in their wellbeing so much more, no matter what’s going on around them. Joe:                 Yes, absolutely.  For me, positivity is only about looking into the future and negativity is about looking into the past, that’s all that is. Ros:                 Yes. Joe:                 Ros, what’s helped you the most in terms of dealing with cancer, like, mentally and psychologically? Ros:                 Talking about positivity, essentially, very early on I adopted the mantra, let the doctors take charge of my illness.  That I took charge of my wellness.  Very early on, I started writing.  Now, journaling is known to be a very therapeutic tool.  For me, it was just something natural that I wanted to do.  It was for me.  Within a couple of entries into my diary, I started to have this imaginary discussion with the future readership, because I just realised whatever I was going through, I was sure that there were other people that were going through similar stuff, like the specific particulars would have been different, but essentially thrown into that whole new unknown scary world. As you know, I am a laughter yoga facilitator and I had for years on the side been running laughter sessions for people and telling people about laughed being the best medicine.  The irony is, that after bowel surgery, laughter is the last thing in the world you can physically do, even if you wanted to.  You could barely breathe.  It took about five or so weeks until I could laugh more comfortably, and it wasn’t like torture.  I had to really think, right, so this thing that I’ve taken for granted all of my life, it’s gone temporarily.  What can I do to tap into those endorphins? Endorphins being our bodies endogenous morphine.  30 times more powerful than the synthetic version. I knew they were powerful.  I knew that in the sessions I had run with people doing laughter, I had asked if people before the session, to make a mental note if they had any pain or discomfort, then I’d ask them after the session if they had that? It was amazing how many people forgotten, “Do I have a headache?” I knew that endorphins and tapping into endorphins was really powerful.  The question is, how could I tap into endorphins when I really didn’t feel like doing so and without the laughter.  Laughing by yourself when you’re feeling crappy is just wasn’t something that I felt that comfortable about doing. Joe:                 It’s not easy. Ros:                 No, it’s not easy.  There were a few things that I did which were really, really powerful.  The first thing being, smiling mindfulness, essentially breathing very shallowly initially, but just sitting with a smile and directing the smile from my face into particularly the areas that were filled with pain and imagining, visualising this powerful smile just residing in that part of my body.  Just those endorphins filtering through.  It was that in conjunction with the breathing really changed the way that I felt instantaneously.  That was a daily practice.  It was not like I put a time limit on it, but probably 15/20 minutes. The other thing that I did, and I still do, like I do with the smiling mindfulness and I highly recommend, especially because I do quite a bit of coaching work.  I found that it sounds so simple, but it has been so powerful, is recounting three things that went well in your day.  Now, this is evidence-based stuff, Joe, this isn’t stuff that I just dreamed up.  This comes out of the school of positive psychology.  Basically, they did studies with people with chronic anxiety and depression.  After a 12-week study, that even after 6 weeks, they found that the group that recounted three things that went well in their day had a significant increase in positive effect and a significant decrease in negative effect. Much more positive feeling, much less negative feeling.  What that basically does it, I did this practice as I was just lying in bed for the night, it essentially put a break on the ruminating thoughts, because when you start to think of things that went well or things that are positive or good, you’re not thinking about the things that are bad, negative or didn’t go well.  Even if they were small things like, wow, I managed to walk down three houses today, that’s so cool.  Or, I had such a nice visitor today, or I managed to eat something without significant abdominal discomfort. Essentially, what that does is, it trains your brain to notice the good and the more that you notice the good, the stronger that neural pathway to noticing the good is.  It weakens the tracks in the brain that are wired to always thinking about all the things that didn’t go well.  What you bring your attention to, what you focus on, that is what grows.  You can either choose to focus on all the stress and all of the fear and all of the frustration.  The F-words, that I call them. Joe:                 Nice. Ros:                 Or, you can actually focus on – to really make a conscious choice to focus on the good things.  These micro moments of joys.  The small things that went well because the more that you actually look for them, the more that you will see.  That’s really important for somebody in any sort of terms of being connected to their mental health and enhance people’s wellbeing.  Conscious gratitude practice was critical to me, the smiling mindfulness was really important.  The other thing that was really powerful for me and I highly recommend is reframing.  Now, we had a little bit of a chat before about the big-C versus the little-C, that is an example of reframing. Reframing the language around cancer to something that sits better with you.  I’ll give you another example.  I never liked the terminology of a bowel reversal, which was the operation I was going to be having to delete the ileostomy and reconnect the bowel.  For me, reversal was going back to the way things were, it was negative, I didn’t want that negative terminology.  In my way, I reframed it that I would refer to this operation as a bowel reconnection.  It’s so much more positive, it’s future focused, and, again, I went into that operation feeling a lot more empowered than had I gone in – this is just for me, it’s not necessarily for anyone – than saying I was having a bowel reversal. I was having a bowel reconnection.  There are so many other ways that we can reframe to actually find a little glimmer of hope, to find some positivity in a negative or really challenging situation.  It’s really important, if you can actually write down a particular challenging time that you’ve had in your life and try to just envisage, was there some unanticipated positive something that happened? Or did something make you smile or laugh along the way? Is there anything good that has come out of that? Is there something good that you can see? What that actually does is help your brain recall that incident differently.  It actually takes away some of that trauma. It takes away some of that pain.  It taps into a lot of that stuff that we even carry around in our subconscious mind, we’re not even conscious about it.  It helps us change the way we remember that particular episode.  I think that especially people that have been going through intense medical regimens, that can be really helpful.  Sitting with trauma, I don’t think we understand how much trauma we carry around with us, it’s long-term, it’s not a good thing. Reframing, smiling mindfulness and conscious gratitude were things that really powerfully helped me create, and I won’t say maintain because it was an ongoing challenge, that emphasised that positive mindset.  Now, six years down the track, I know that even if I might start down the, “This is happening…” I can stop myself, I’ve got that mindful awareness now to say, “Right, that’s not helpful, let’s think, is there anything good that’s come?” In this moment, what can I appreciate? In this moment, what, if anything, there must be something that is going well that’s okay. Joe:                 Yes, that’s fantastic, Ros, that you filter things through hope and try to look at things from a different perspective, from a perspective which is a lot more helpful. Ros:                 Yes. Joe:                 Ros, I know that laughter and cancer don’t necessarily always go together, we just talked about that, but I heard about the laughter yoga from my friend Khevin.  I know you have some unique strategies around that.  Could you talk about what that is for you? Ros:                 Laughter is a very powerful modality, when you laugh, it’s very oxygenating.  You try laughing without breathing.  You can’t do it. Joe:                 Yes. Ros:                 Again, it’s tapping into those endorphins, it helps strengthen our immune system, it lowers the blood pressure.  Basically, it’s an extraordinary stress buster.  Any situation that you can have a laugh about, not necessarily into someone’s face or being disrespectful, but in that respectful context, choosing to laugh is a really important thing.  It’s about not leaving laughter to chance.  The times that we tend to need to laugh the most, for the health benefits of laughter, are the times when we feel like laughing the least.  Getting a bowel cancer diagnosis is one of those moments, it’s not really a laugh-out-loud moment.  Being able to actually choose to, for example, to either in your own time watch comedy as opposed to the news. Just in your own time, choose what friends that you decide to associate with, people that bolster your mood and make you feel good, or the ones that think about all the worries and fears that you haven’t even thought of and bring you down.  It’s about deciding what you do in your own time to bring more laughter in.  For example, it’s really powerful in terms of anxiety, to counter anxiety and depression.  I remember 12 months down the track, I actually had my follow-up, a CT scan, and a follow-up appointment with the colorectal specialist.  He said, “Everything is looking good, Ros.  Although, there’s a little growth on your liver and I think that’s worth getting checked out.” It’s like, what? Of course, I went back to the gastroenterologist that had done the initial colonoscopy. He said, “Listen, I’m pretty confident that it’s a benign liver cist, but I’ll organise for an MRI, but you’ve had so much going on, you can wait a couple of months.” Again, it’s like the irrational part of my mind kicked in, it’s like, hold on, you told me that my polyp was fine, and it wasn’t.  It’s like, I’ve got this thing on my liver.  I ended up having a post-traumatic response to 12 months down track, to so much what I went through.  I was so strong about all of it.  Then I was thinking, gosh, if this is like anything that’s not benign, I don’t know how I’m going to cope.  I’ve got really quite chronic anxiety.  I really sat, I did a lot of breathing mindfulness.  A lot, a lot, a lot of conscious breathing which definitely helped.  It wasn’t enough to boost my mood. What I would do was, I wasn’t comfortable about laughing just out loud at home, because you’ve got to find something that works for you.  For me, when I was in my car, I would pretend that I was just having a hilarious conversation with someone and literally, laugh, laugh, laugh, laugh, for like a few minutes at traffic lights, whatever.  It didn’t worry me that people would look in and think, “She’s having fun with a friend or something.” It was the most powerful thing that I could do to essentially help eliminate a lot of anxiety, it really, if my anxiety levels were, say, at an eight, they would be brought down to a four in moments.  That sounds crazy, but it is so powerful because, again, when you’re laughing, you’re in that moment of joy.  You’ve left all of your troubles behind.  You’re flattering your system with these endorphins. You’re also, because of the breathing aspect, as well, you’re basically tapping into your parasympathetic nervous system, which is our other nervous system to the sympathetic nervous system.  What happens on a daily basis or when we’re going through stress or basically, probably a lot of listenership, would be able to relate, is that this stress system, this sympathetic nervous system just doesn’t switch off.  It’s in overdrive.  We’ve just been bombarded with all of these things that we’ve got to do and the next test results and waiting for that test result and thinking about what might be. The parasympathetic nervous system is the nervous system that calms our whole body down.  It ushers that feeling of calm into our body.  Breathing helps really trigger what’s called the relaxation response and then the laughter, not only is because you’ve got to breathe to laugh, but it taps into the endorphins.  It’s just like this instantaneous circuit breaker.  It just changes your whole physiology.  It’s making decisions, choices to laugh out loud.  If a re-run of Seinfeld on, rather than just sit on the couch with a smile, it would be to actually consciously choose to laugh-out-loud, and really laugh, and share a laugh with people. One of the most powerful things when I came out of hospital and about week-five when I could start to laugh again was our family of four squeezing onto our couch.  Watching a comedy.  Just as a family, it connected us, it just helped get rid of a lot of the stress and the anxiety and it’s like, yay, we’re laughing again.  Mum’s okay.  We’re laughing.  It’s really – some people can be a bit disparaging about it. Honestly, it’s such an important thing.  I don’t think that we would have been given the gift of laughter if it wasn’t important.  We smile, and we laugh before we talk.  That’s how we used to communicate.  It’s really important that the problem is that when we go through stuff, the laughter gets deeper and deeper within.  It’s like you quite rightly don’t feel that it is a laughing out loud time.  In some way that feels right to you, it’s essential, it’s really essential for your mental wellness, to the people around you and yes, it’s a beautiful thing. Joe:                 Yes, absolutely.  That’s fantastic, Ros.  Tell us about your Laugh Out Loud project, how did that come about? Ros:                 In aged care, I was, at the time, lecturing at the Tribune University and I had got chatting to one of the nursing staff there.  She had a secondment with a large age care facility.  Essentially, we devised a laughter activities program for 35 age care facilities across Victoria.  Where 30 minutes for 6 weeks we would run 30 minutes of laughter.  It was laughter yoga.  The laughter exercises and the breathing and the clapping.  It was really powerful.  We measured blood pressure and heart rate before and after each session.  We also did it a couple of times at the beginning, the middle and at the end of the study, we measured out positive and negative effect. Also, happiness.  Again, it was really powerful.  Thinking that in six weeks, we found the blood pressure consistently dropped at the end of the session, not too low.  There was less negative effect.  Just watching people social connect, just after a session or before, or people with dementia who had very low levels of communication, one lady who barely talked, but when I went before, she’d seen me coming down the corridor, “There’s the laughter lady.” It’s like, wow, that’s amazing, she can barely talk, “Here’s the laughter lady.” As I said to you, laughter is something that we’re born with and it’s one of the first means of communication. The amazing thing was that even people with dementia could laugh.  It came back to them.  Even once their language had gone and even if they couldn’t laugh, they could smile.  Or even just being in that atmosphere, in that environment, you could just feel a shift.   When you get older, you tend to get less active, the wonderful thing is, there were some comments of people, they felt that they were getting an aerobic workout.  They felt so much better for it. Even people with really limited mobility could do this.  after that particular project, we then trained staff, so still to this day, many of the facilities are running various laughter programs or adding laughter activities as part of already existing activities.  If they’re doing gardening, they might pretend they’ve got a spade and laugh.  As they’re digging in the ground and pulling out this beautiful carrot or whatever it is.  Yes, that was a really beautiful project to be a part of. Joe:                 Yes, that’s really spectacular.  To be known as the laughter lady in your life, I think that’s exactly what you want. Ros:                 Yes, it certainly beats the anxiety lady or the depression lady. Joe:                 Yes, absolutely, Ros.  Tell us about your book, as well. Ros:                 Yes, okay.  As I said, I started writing journals, as I say, very much, it started with myself.  I found that at the end of each chapter, I was just including sticky notes of question to people.  It’s like, I wonder if other people’s friendship circles change, or was there some part of their diagnosis terminology that they weren’t happy with? Did they reframe the language around that? Then I’d also include just various techniques that I would consider, like the conscious gratitude practice or smiling mindfulness, or walking mindfulness.  Things that I did that I experimented with.  I think before my experience with the bowel cancer, in a way, all these things were a bit theoretical. When you actually have to live them, then you really feel and find out if they are right for you.  I would experiment with lots of different things, like reframing and that.  Quite early on, I made a promise to myself that I wasn’t just going to keep it to myself, that especially like you’ve had testicular cancer, people don’t like talking about bowel cancers.  I could get in trouble saying this, but there are sexier cancers and in terms of funding and things like that.  I’m quite comfortable talking about bowel cancer.  I’m quite comfortable talking about these things that other people aren’t comfortable talking about. It’s really important to have conversations about these things that other people aren’t comfortable talking about.  It’s really important to have conversations about these things.  To feel that you’re not alone.  What you’re doing is so important, Joe, these podcasts, really hats off to you.  It’s really important for people to feel that there are other people going through similar things and perhaps these things that you didn’t even dare to think about or vocalise, I’m happy to put my experience to help other people.  I’m really happy to do that.  Thankfully, my family were on board, so I had, at the end of a year or so, about three journals, then over the next year, I wrote another one, as well. There were four journals.  I had decided at the time I didn’t want to do anything with them.  There were two things about it.  I didn’t want to be defined by bowel cancer, I wanted to spend more time in the wellness world.  The other thing was, I had this fear that I would be stepping back into a dark space and I just needed time out.  The interesting thing is, that a few years after that, which was prompted by various friends getting not nice diagnoses.  Then I said, right, it’s time.  I went back, I dug out my journals and I realised that they actually weren’t as negative as I thought.  I think I must have been deluded. I wasn’t even on drugs.  I don’t know why I was, but I realised that they were actually a really useful and positive way to enhance other people along their illness to wellness journeys, as such.  My first working title was: I Heal, You Heal.  Then I really wasn’t comfortable about the laughing at cancer, as a title, because the title: Laughing at Cancer, how to heal with love, laughter, and mindfulness.  The last thing that I wanted was for people to think that I was laughing at cancer and making fun of it and it’s a funny matter, because it’s not, people die of cancer tragically, or go through a lot of pain.  For me, laughter was more a metaphor, really, for finding something that we can do to orientate our mindset to positivity opposing adversity. My book is essentially structured about, so each chapter is something that I’ve been processing or dealing with.  At the end of each chapter, there’s reader engagement, healing strategies, techniques, etc.  As much as it’s about me, it’s not.  It’s really an invitation for other people to explore aspects of their own life, of their own life journey really.  I have been very positively overwhelmed by even people who haven’t had cancer, that they’ve found it really helpful.  Even my 86-year-old, my husband’s uncle, send him my book, I really want him to read.  He’s told me that he now every night he thinks about three things that went well in his day.  He feels so much better for it.  It’s such a privilege to be able to birth a book and to get feedback. To feel that in some small way, perhaps I may have inspired a bit of change, or I may have been able to just help someone connect to their joy, connect to their positivity, where they thought that it was the last thing in the world they could do.  In a way, I’m trying to give permission to people to allow that to happen.  People feel that if you’re going through grief or if you’re going through a cancer or something like that, that you’re not entitled to joy, to happiness, to having some pleasure, but it’s really important to make those moments, to not leave them to chance. Joe:                 Thank you so much, Ros.  That’s such a fantastic point.  Thank you so much for your brutal honesty.  Those words really all need to be said. Ros:                 Thank you so much.  If anybody is interested, my book: “Laughing at Cancer: How to Heal with Love, Laughter, and Mindfulness”.  It’s available online, bookshops.  If you know someone who really think might want a personal inscription, please go to my website: laughingatcancer.com.  Send me an email and I’m happy to throw in the postage, so you wouldn’t pay anymore.  I’m happy to write in it for someone because I know that sometimes that can just make a bit of a difference to someone. Joe:                 Fantastic.  Thanks so much for your time and for sharing your perspective.  

When it comes to friends and family supporting you during cancer, it’s a tricky balance to maintain: on one hand, you don’t want to Impose or come off like you can’t handle it, but then again you want to let them in and help because they want to be there for you, but they don’t know how.  Today I’m talking to Rachael who went through cancer herself and created a solution a mobile app that can break those barriers and make it easy for people in your life to help out and for you to get the support you want, on your terms. Here are some things we cover today: How diagnosis turns your world upside down The hidden struggles of living through cancer The biggest challenge behind asking for help How CanDo helps you get the support you want and much, much more! Links CanDo app Garvan Institute of Medical Research Episode 023: Getting The Support You Need, On Your Terms Full Transcript Joe:                 Hey, Rachael, I love your app.  I must admit, I was thinking about this before, a way of getting people to support you on your terms.  I think this is so fantastic. Rachael:          Yes, thank you.  It’s been a labour of love to get to this point.  There are lots of plans for the future, as well, so it’s been a big deal, a lot of work. Joe:                 Yes, I can only imagine.  Yes, I was talking to Ben Smith from the University of New South Wales, that’s when he told me about it.  I was like, wow, that’s exactly what we need. Rachael:          Yes, well, I’ve been lucky enough to get a lot of support from most of the big main cancer organisations.  They all recognised the need for it.  I think a lot of them just either don’t have the money to do it or it’s not their culture to get those things done.  Yes, there are lots of plans for the future to make it bigger and better and all that kind of stuff, but it’s been great for me, as well. Joe:                 Fantastic.  Rachael, I want to take a moment to go back in time in a time-machine to a time before cancer.  What was life like before?  What was life like then? Rachael:          I had a pretty senior job in an advertising agency.  I have a 25-year background in advertising.  I had just taken on a pretty big job.  Had a brand-new mortgage on my first apartment, single, living in Sydney and having a lot of fun.  It was a Saturday morning when I accidentally found quite a large lump in my right breast.  You instantly feel the other side because you want to feel if it’s symmetrical, because you think if it’s symmetrical, maybe it’s something that’s supposed to be there. It was on the underside then I thought it might be something attached to my ribs.  It wasn’t symmetrical, so I was pretty quick to go to my GP.  Maybe two or three days later.  She had a look at it and the first thing she said, I remember every word, she said, “I don’t like it.” Then went into a week of scans and ultrasounds and biopsies and things like that from that point on.  Just trucking along in life and everything is normal and doing normal things, then all of a sudden, literally, your world turns upside down in an instant. Joe:                 Yes, it’s crazy, isn’t it?  I remember when I found out, those words are kind of etched into your mind.  What was it like for you?  What were your first thoughts when you got your diagnosis? Rachael:          Well, the diagnosis was kind of a staggered process.  When I went to have my mammogram and ultrasound, and it was the week before Christmas, so I remember the doctor, she was great.  She called around to try and find somewhere that could actually take me the week before Christmas, because they’re usually really busy in that time because they’re about to close down for the couple of weeks.  The radiologist had stopped talking to me, or the radiographer had stopped talking to me. My sister had cancer, so my sister had a rare form of sarcoma called: Synovial Sarcoma.  I’ve had that experience with her going on for years.  She had said to me, when they stop talking to you when you’re having your scans, she said that’s when you know it’s bad news.  I was chatting along with this radiographer and then she stopped chatting and I just went, oh no. I’d already twigged that something was going on because they’d done the mammogram twice.  Of course, that’s code for, there’s something we want to have a better look at.  At that point, she called the doctor into the room, he came in and he said, “I want you to sit up.” She sat me up and said, “Look, I think we’re looking at a breast cancer, but we need to do a biopsy to be sure.” My doctor had already had the foresight to book me in for a biopsy for the following day.  That was already going to happen. Once the biopsy came back, it was a couple of weeks, I had to wait over Christmas until I think it was the day they reopened after Christmas that they confirmed that the cells they had biopsied were a Carcinoma.  My GP was the person who told me that.  She cried, actually.  She called me in and she opened the envelop and she started to cry.  I think that’s because she knew my history, she knew my family history, she knew that my sister was very sick.  I think she was just thinking, what more can people take? Then, of course, I had surgery and it wasn’t until surgery that they were able to give me the exact diagnosis of what kind of tumour it was and what the implications were as far as lymph nodes were concerned and the stage and grade and all of that kinds of things.  Which, unless you’ve been through cancer, those things are all gobble-dee-gook, really, you don’t really understand what those things mean. Yes, from start to finish, I knew I had some kind of cancer, probably pretty quickly, and then it was another month before they understood what it was and how to treat it and what happens next kind of thing. Joe:                 Yes, absolutely.  You just made me realise that when I was doing my test, when I was doing my ultrasound initially, that the girl who was doing it, she stopped talking, as well.  Yes, I remember it now.  I thought it was a bit rude. Rachael:          Yes, it’s a common thing.  My sister had mentioned it to me in relation to her cancer.  Then just recently, I had my mammogram and ultrasound and they had to redo the mammogram and then they stopped talking to me during the ultrasound.  What happened was, they’d found some – I’ve had reconstructive surgery fairly recently – so it was new scars that they were looking at.  That’s what they were trying to figure out.  They were trying to work around the new scaring.  It’s a really disconcerting moment when you’ve had that happen to you in the past. Joe:                 Absolutely.  Rachael, on the practical side of things, there is a lot going on when you find out you have cancer, you’ve got your treatment to go through, you’ve got your everyday things, your job, all of that to worry about, how did that work out for you? Rachael:          Not easily.  I was very lucky in that I had a boss at the time who was incredibly understanding, and he wanted to make things work.  Which is really important.  Obviously, there are some people who instantly think, well, how is this going to affect my business?  That’s natural.  I actually don’t judge those people too harshly because they have a business to run.  They’ve got to try and understand the implications on that.  I get that part of it.  I was really lucky that my boss at the time who valued my contribution and wanted to keep me involved as much as I possibly could.  Ultimately, what happened was, I was so sick with treatment and I suffered really bad side-effects, that I couldn’t really work at all for quite a long time.  I tried to keep my hand in a little bit, but for me, it wasn’t really possible. Whereas, I know other people who work part-time during treatment or sometimes they work full-time during treatment.  For me, that wasn’t possible.  They kept my job open for quite a while.  They were filling in with consultants and freelancers.  I wasn’t getting paid, so I didn’t have paid leave for most of that.  I did have access to income insurance.  Which is a whole other story because that sounds fantastic but that came with its own set of problems, because claiming against those insurance policies is really complicated. A lot of the stuff that’s going on at the moment in front of the banking world commission actually relates back to income insurance claims and how they’ve got it so wrong in the past.  I did have access to some money through those channels, but it’s a massive lifestyle change, and I want single, it was only my income paying for the mortgage.  Some people are surprised when I told them that you still have to pay your mortgage when you’re sick. They have this idea that the bank says, “You’ve got cancer, don’t worry about it for a year or something.” That doesn’t happen.  You still have to pay the bills.  It’s hard work, you know?  Also, I think psychologically going from being – I was busy in meetings, meeting C-level people and big companies to talk about their business plans and things like that.  Going from that to being at home sick most of the time.  It’s a huge psychological shift that is quite a challenge to overcome. Joe:                 Yes, absolutely, Rachael.  What about your family and your friends?  Did they support you in the way that you wanted to be supported? Rachael:          Well, I think they tried.  I think that is really how can-do came about, really, is the learning from that particular of the experience.  A lot of people tried to help me, a lot of people offered help, and I did the typical polite thing of saying, “No, I’m fine.  I don’t need any help.  I’m fine.” Also, having been used to be a very capable independent person, you don’t want to give that up.  You don’t want to be perceived all of a sudden as being this helpless person.  It’s the natural thing to say, “No, I’m fine. I don’t need any help.” Then, of course, the other people would walk away saying, “Well, I know she can’t do everything by herself, but now I don’t know how to re-ask the question or what does she really need.  Like, if I do this thing, is that the right thing to do or is it the wrong thing to do?  I don’t know if that’s actually helpful or not helpful?” It’s nine years later and I still have people coming to me and saying, “I wish you had let me do more.  I wish you would have given me something to do.” Thinking about all of that really was the catalyst of can-do.  Also, at the time, I had a pretty unique situation, in that my sister was going through treatment at the same time. My family had actually, my mum and dad, had moved back to Sydney with the idea that they were going to help her get through her latest rounds of treatment.  She had a couple of young kids.  She had a very different lifestyle to mine.  She was living in the burbs, a couple of kids.  Had a lot of support from her kids’ school and people like that.  In my case, I didn’t have those networks that tend to happen once you have kids.  My relationships weren’t based on taking the kids to swimming. My relationships were based on: when are we going to have a cocktail?  It’s a very different kind of environment.  It’s a big leap also to go from that to can you change my sheets, or can you help me with my insurance paperwork, or can you organise a gardener to come over?  These are really awkward conversations to have.  Off the back of all of that, not really having the access to the kind of help I needed and not being able to ask for the help I needed.  I really thought, well, there has to be a better way. I was hearing a lot from people who had the same sorts of problems.  I thought, what is the solution and what is the way to solve this problem, so that people can start getting better care when they need it and the help that they get is actually more relevant to what they need?  That was really the catalyst to thinking about can-do at that time. Joe:                 Yes, Rachael, that makes so much sense.  I love the name because it’s the can-do attitude.  To me, it really is about dealing with problems and not about giving up. Rachael:          Yes, well, the can-do is the brand, the brand that I’ve developed during can-do, and remembering I have a 25-year experience in advertising.  I think of that as a brand.  The personality is always positive, so the glass half full about solutions.  Rather than dwelling on problems.  It’s about finding pathways to better outcomes.  We want people using can-do at the end of it all.  As you know, Joe, you come out of cancer treatment and you’re not the person you were.  For some people, it might be a physical disability that they have for the rest of their lives.  For a lot of people, the psychological stuff going on that stays with them for a really long time.  Diet, fitness, all sorts of things tend to go by the wayside when you’re sick.  We want people using can-do to come out of their experience in better shape than they might otherwise if they weren’t using a tool like can-do. Joe:                 Yes, fantastic.  With can-do, tell us how you would go about getting this app and getting new people involved to help you out? Rachael:          CanDo is available in both the App Store and Google Play.  It’s free to download and free to use.  That’s thanks to the sponsorship of the Garvan Institute of Medical Research.  This year, we’re sponsored by them.  They’ve been able to make it so that the app is free for users.  We are looking for other partners and sponsors.  I’ll just throw out that little sales pitch there for anybody who’s listening.  You download the app.  Once you’ve downloaded the app, you then invite your friends and family to join you.  In our language, we typically talk about the person going through treatment as the person driving the app. It can also equally be driven by a carer, so a spouse or an adult child or a really good friend.  A really important piece that I talk about is the person I call the bossy friend.  We’ve all got that one friend who gets stuff done and organises things.  It might be that person.  They invite people to join through Facebook or email address.  Once you’ve got your team assembled, you can start allocating the tasks.  We suggest a list of tasks or you can customise whatever tasks you need help with.  Like I said, it can be as simple as domestic stuff, or it can be as complicated as legal stuff or financial stuff. Then a lot of people also, you might not be physically able to help, but maybe over lunchtime you can make some phone calls for that person, make some inquiries about a handyman or a gardener or something like that.  There are all sorts of things you can do to help somebody which just takes that pressure off having to maintain their day-to-day stuff, which we all have to do.  Then there’s also an update section in the app.  I put that in there especially because when I was sick, and I’d come home from chemo, I’d get 20 phone calls from friends.  How’s chemo?  What are the doctors saying? How’s chemo?  What are the doctors saying?  By the fifth or sixth phone call, you’re just exhausted and you think, “There’s going to be another ten phone calls.” This way, with the update section, it allows you to reach out to this inner-circle of friends and give them information that you wouldn’t necessarily for example put on Facebook or something like that.  Facebook, I tend to think of a very curated life.  Everybody is having an amazing time on Facebook.  It may be that you’re not having an amazing time, so our update section gives you a safe place to share that information with your inner circle. Then there’s a content area.  In that content area, we give people ideas of how to approach sticky situations.  What do I say when my friend tells me that they have cancer?  How do I approach this?  What’s the latest news in cancer research that’s relevant to somebody going through cancer?  There’s something in the app that hopefully services a whole bunch of different needs for people as they go through their treatment journey. Joe:                 Yes, Rachael, I love this solution because it caters to both sides of the cancer story.  The patient, the person going through it, because all of a sudden, you don’t have to be awkward, trying to find the right terms to tell people about what you need.  At the same time, for the friends and family, they don’t have to try to guess what you want because they also don’t want to do the wrong thing or say the wrong thing.  I wish that something like that was around when I was going through treatment. Rachael:          Yes.  I had some crazy things said to me when I got sick.  People would say, “Everybody gets breast cancer now, it’s like having the flu.” Somebody said that to me.  Of course, the one that you hear a lot is, “Yes, my aunty had that cancer.  She died.” You think, okay, well that’s not really helpful information right now. Joe:                 Thanks for telling me that, yes. Rachael:          That felt really great.  In terms of understanding what people want, the example I like to give is, when I was sick, people would say, “What can I bring you?” I would, of course, say, no, I don’t need anything.  Then they’d inevitably show up with a cake or a pastry or something like that.  I couldn’t eat those things.  Those things just made me really sick.  They would just go in the bin.  What I really wanted was oranges and citrus.  Of course, I never asked anybody to actually bring me a bag of oranges.  If I said that to you and you’re a friend of mine, of course, you’d be happy to do that, but it’s not something you’re naturally going to think of without me giving you some kind of indication that that’s what I want. CanDo allows you to put those things out there, so that people really know how they can help you in a really meaningful way.  What you said is exactly right, it’s about the person going through treatment, but it’s also about solidifying the importance of the relationships around you.  It’s really important that you maintain those as you go through treatment because social isolation is a really big problem for people with serious illness. Joe:                 Yes, so true, Rachael.  You know, like you mentioned, you really never come out the other end of cancer treatment the same as you were before.  I know it gave me a completely different outlook on life.  What’s it like for you?  Did your long-term goals and how you see yourself and things you do every day, has that changed?  What are you like now? Rachael:          Well, things have changed.  I was never somebody who suffered fools.  I’ve always been very opinionated and very strong-willed.  I think now I am far less likely to say yes to things that I don’t want to do, for example.  Maybe in the past, I was a bit more, “I don’t really want to do this thing, but I’ll do it anyway because that’s what’s expected of me or whatever.” Whether it’s a function of age or it’s because of the cancer and because of what happened with my sister, I feel very strongly that life’s too short to spend time being miserable or being around miserable people or doing things that you really just don’t want to do or don’t believe in.  I’m much clearer about what I’ll participate in and what I won’t. I don’t apologise for those things either.  I don’t know, if it’s a woman thing, as well, but I can’t do that because sorry, sorry, sorry.  These are all my excuses.  Now, I just say no, sorry, I can’t do that.  Things like that.  You just think, life’s too short for me to try and makeup an excuse, so I’m just not going to bother.  I’m really focused on that.  I’m really focused on making CanDo successful. There are lots of plans for the future to make it bigger and better and also service a lot more people beyond cancer, because when I talk about this in any kind of public form, I instantly get the feedback saying, “Have you thought about doing it for X or Y?” Of course, I have, but it’s just now a matter of time and money and energy to get the other opportunities addressed.  That’s my focus.  I’m laser-focused now in a way that I probably wasn’t before cancer. Joe:                 Do you think that helps you, as well?  Being focused on this new thing that you’ve got going on with CanDo, which is fantastic, so really good on you for doing that, because it’s really powerful and that’s something that’s going to help lots of people.  Does that give you a new positive focus to shape your new life around? Rachael:          Yes, it does.  I’ve actually quit my job, my paid job.  25 years in advertising and I’m now in a very different world, which I really enjoy.  I get to talk to people who are literally curing cancer.  Researchers and scientists and specialists, oncologists, and the big cancer organisations, who are trying to solve how people live with cancer in the future.  One of the big challenges with cancer is also that as treatments become more effective, more and more people survive really long periods of time, often with cancer, as well. The numbers that are projects of people living with cancer, as a chronic illness, rather than a terminal illness, is massive.  I meet people who are actually trying to solve those kinds of problems.  That’s going to have ta fundamental effect on our society, our economy, our health policy, all sorts of issues like that.  For me, I get a real kick out of being in situations where I learn and I’m learning every day.  I get really enthusiastic about the future. Joe:                 Yes, that’s fantastic, Rachael.  Good luck with your CanDo app. Rachael:          Thank you, thank you, Joe.  

Look, I’m a huge fan of adding something new to your life after cancer, something that means the world to you, something that you really care about.  That’s why I have so much in common with Dana, she took her energy and she’s channeled it into becoming an advocate for young adults who had cancer, for cancer survivors and their caregivers. Here is what we cover in this conversation: Overcoming the diagnosis Your emotional shield during treatment The challenges beyond recovery Our right and duty to ask for help Caregivers, the forgotten people Living stories and why we need more of them Survivors and the road ahead The instruction book for cancer (that doesn’t exist) and much, much more! Links The Dragonfly Angel Society Dana Stewart (Cure Today) Episode 026: Stand Up For Your Rights Full Transcript Joe:                 Well, Dana, thanks so much for joining me.  I really want to go back to if you had a time machine and we were to go back to this crazy time when you found out you had cancer, how did you react?  What went through your mind? Dana:              My very first thought was, I never thought I would get it.  I feel naïve saying that, but I was 32 years sold.  I really had no family history.  For me, it was like for everybody, it was a massive shock, but I was in that initial denial, this can’t be happening, this would have never happened to me.  I know everybody says that, but it was nothing that I ever planned on happening, unfortunately.  Joe:                 Yes, absolutely.  Your family and your friends, how did they react?  Did they support you in a way that you wanted to be supported? Dana:              Absolutely.  I think everybody shared in their surprise and denial, if you will, like I did.  When I originally found my lump, I unfortunately didn’t act on it immediately because I had that mindset of, I’m so young, nobody in my family had breast cancer, I’m sure it’s nothing, I’ll just go about my life.  The next time I see my doctor, I’ll have it checked.  When I had it checked, they really weren’t worried, it didn’t feel like cancer.  Everybody was status quo.  Then when we started going down that road that it really was cancer, the good thing is, after my friends and family got over that initial shock, I was blown away by the support I received.  You find out who your friends and family really are.  It was pretty amazing.  Actually, it’s what got me through because I didn’t get a lot of the crying, they wouldn’t let me be the woe is me.  They were like, fine, we’re going to fight this with you.  It was an incredible journey for them to be with me on. Joe:                 Yes, that’s so fantastic to hear, Dana.  Even if you have those people who are really close to you and they’re really supporting you through it, it can still be really tough to deal with emotionally and mentally because stuff like in between treatment and you’re waiting for results and to hear from your specialists.  Was there anything that helped you stay on top of it emotionally and mentally? Dana:              During treatment, I found that I was on auto-pilot.  I had my list of appointments, treatments, my surgeries, everything.  I’m kind of a planner.  As long as I had my list of here’s what I have to do, I worked with my nurse navigator on that, I felt pretty comfortable that I could make it through.  Like I said, I kind of turned on autopilot, so the emotions were kind of suppressed.  For me, it was let’s just do everything they tell me to do and let’s get this done and move on with my life.  That was, in my opinion, the easy part.  It was the aftermath for me that was a lot more difficult. I allowed myself to feel the emotions when I was done with my final chemo treatment.  That’s where it really got tough for me more so than the treatment itself.  One of the big things that I… that I prayed that the cancer isn’t going to come back.  Nobody understands this.  Threw that on a piece of paper and was allowed to just get it out there.  The paper never judged me.  I think that was probably one of the best tools that I ever used to get through. Joe:                 Yes, that’s fantastic.  Was that like a diary that you had?  Would you write in it every day? Dana:              Yes, not every day.  I wrote in it a lot and I also kind of used it to keep track of my journey.  Today, I went to the doctor and we finalised my surgery.  I decided to go with the mastectomy.  Here, were my thoughts why I did that.  Then one of the big things I did was in the back of it, I printed out small pictures of family and friends and trips and all of this stuff that I had done before my treatment started and put a little collage together.  I remember titling it: Why am I doing this?  Chemo is hard.  Making these surgery decisions to remove parts of your body is terrifying.  I had to remind myself, why am I doing this?  What am I doing?  I put all of that together and I would go to the back of my notebook and I would look back and be like, because of these people and these things that happened in my life and that’s why.  I wrote in it a ton and I carried it with me to every appointment. Joe:                 Yes, that’s fantastic, Dana.  I really agree with you, this having a visual cue, having this reminder of what you’re fighting for.  That’s really powerful.  Did you come up with it yourself? Dana:              Yes, I like to do that visual/creative kind of thing, like scrapbooking and things like that.  Something that I knew if I had that with me, I would stay on the course.  I loved to write, and journaling has always kind of helped me.  Just having that notebook with me was almost like my version of a little kid with a teddy bear.  It just was very comforting to have that where I was going.  It was there, it was my safe place. Joe:                 Yes, that’s fantastic because it also gets all of these worries out of your head and out into the real world.  On the paper, whatever it is, but it’s out of your head. Dana:              Exactly.  That’s where it needs to go, otherwise, it bottlenecks up there and not good. Joe:                 Yes, absolutely.  Dana, you mentioned that it really hit you emotionally when you finished treatment.  What happened then?  Why do you think it worked out that way? Dana:              For me, I don’t bottle up my emotions, per se, but I was in that fight mode.  Looking back, in my mind, I was like, I don’t have time to worry and be fearful.  I have to go through chemo.  I have to decide what kind of surgery I’m going to do.  The big thing was, I have to hope I live and make through this.  I have cancer.  I have no idea what’s happening with it.  You hear the word, you think you’re dead on Tuesday.  In my mind, it was just, emotions, I’ll worry about them later.  Looking back, I kind of wish I wouldn’t have done that.  I kind of wish I would have gone through the process as it was happening.  For me, I bottled it up, I had my last chemo.  I had seen doctors every week to every three weeks. I was finished with my last chemo treatment and they were like, “Hey, cool, you’re done.  Great.  We’ll see you in two months.” I was like, “What just happened?” I say I crashed and burned.  I had a complete meltdown, couldn’t stop crying.  It all flooded in at that moment what had happened to me for the last six months.  I think that’s why the emotional toll was so great for me because I just didn’t have time to do it when I was trying to figure out, how was I going to beat cancer. Joe:                 Cool.  How did you get through it?  How did you get through this really tough time? Dana:              I talk a lot.  I talk to a lot of people.  I actually saw a therapist.  I know sometimes people are like, I don’t want to do that or that must mean you’re crazy.  I tell everybody, go talk to somebody.  Talk to a professional.  Talk to somebody who’s not a family or a friend, who’s going to automatically be like, you’re going to be okay, everything’s okay.  You need to hear from somebody who really doesn’t know you or just is a professional in the situation saying, alright, here’s why this is happening, here’s what you can do to get out of it, and yes, right now, you need to mourn the situation. I found that going to speak to somebody.  Quite honestly, I still talk to somebody today, helped me tremendously break down what was happening, because I didn’t understand it.  I was like, I should be so happy.  I’m done.  Everybody wants to celebrate.  This is so great, and I’m miserable.  Going and talking to someone, it was a gamechanger. Joe:                 Yes, that’s fantastic, Dana.  I think that’s so brave of you because I guess I’m speaking for myself here, but probably for many of us, it doesn’t really occur for you to go and see a professional, right?  It’s like it’s cancer, it’s supposed to be tough, right? Dana:              Right.  That was the thing, too.  My oncologist was the one who told me.  He was like, I think you just need to go and talk to somebody.  I was like, about what?  It just doesn’t click.  I’m like, what am I supposed to talk about?  Then when I went through the process, I was like, okay. Joe:                 Yes, exactly.  I think it’s really great, in many ways it’s kind of like a stranger on a train.  There’s no filter, there’s clearly no agenda, you can just say whatever you want, right? Dana:              Exactly.  It goes back to that whole judgement thing.  If your family friends – good family and friends are not going to judge you – but you’re still not going to maybe open up as much and tell them, I’m so afraid that I’m not going to live past the next year.  I would dabble in that a little bit with my parents or my friends.  Like, no, you’ll be fine.  It’s like, you don’t know that.  You don’t know how I feel by saying that.  Going to somebody, like you say, a stranger on a train, they’re not saying, “Don’t think that”, they’re like, “Here’s why you’re thinking that.” It helps break it down and you’re like, okay, cool.  I’m really not crazy, these are normal feelings.  Excellent.  That helps. Joe:                 Yes.  During that time, both during treatment and after, it’s so hard for not only yourself but also for the people close to you.  I know you’re really close with your mum.  It’s really hard for them to watch you go through cancer.  Like, in your experience, what are some of the biggest challenges for the caregiver? Dana:              That’s a good question.  Honestly, I think they’re some of the most forgotten people in this whole thing.  Granted, the focus has to be on the person going through it, but the caregivers are needed and they’re those rocks that we need.  Their emotions and everything are pushed aside.  Like, we don’t want to hear it, I don’t care that you’re upset today.  I just had a mastectomy.  You are feeling worried, I don’t really want to hear it.  I went back and forth with my mom and dad, mostly my mom was my caregiver. We struggled a couple of times because she would want to tell me her emotions, like, I don’t want to hear you saying you’re going to die, you’re going to live, you’re going to be fine.  I was like, I don’t want to hear you say that, I don’t want to hear that you don’t agree with what I’m saying.  We would butt heads a bit because it was hard for me to process her emotions because I couldn’t even process mine.  Then she had nobody to talk to because none of her friends had kids who were going through cancer at that time.  She was just like, I have to support my daughter, and nobody can support me.  We talked a lot about that, especially after I was done. One of the things that my mom and I agreed about, right after I had my crash and burn after treatment was, we’re going to agree to disagree.  She’s going to feel this way, I’m going to feel this way.  We’re both just going to realise that’s what’s happening.  It was a lot better than us trying to be like, dissecting each other’s feelings and trying to understand what we couldn’t understand.  The caregiver situation is very interesting to me now that I’m so far out and seeing it more.  They’re like the forgotten people. Joe:                 Yes, that’s such a great way of putting it.  They really are the forgotten people. Dana:              I feel bad saying it because we need them. Joe:                 Yes, exactly, because really the way I see it is, obviously, like you said, the whole focus in on the person going through cancer, but when you’re the caregiver, you’ve got not only to be the rock and support the person who’s going through it, but you also have to try to maintain some sort of semblance of normal everyday life.  You have to still try to go on and show up and be normal or whatever that is, right? Dana:              Very true, yes.  Exactly. Joe:                 What sort of advice would you have for someone who is a caregiver, for someone who – what should you do to support someone through cancer but also to support themselves and to take care of themselves, as well? Dana:              Good question.  I’m not sure I have a 100 percent answer, but when you support the person going through the cancer, I don’t know how to say it without sounding like a real awful person, but you have to make sure that their emotions, what they’re going through in that moment is the focus when you’re talking to them.  Just let them talk it out, don’t fight what they’re saying.  If they’re telling you, “I’m terrified the cancer is going to come back and I’m so worried I’m going to die.” What didn’t help me was, no, no, no, you’ll be fine.  Okay, I’m hearing you, that must be so scary, tell me that at any time.  I’m here to listen.  I think just accepting what that person is saying and being there to just be their sounding board because both of you have no idea what to expect in this whole thing, so trying to challenge back feelings, at least for me, didn’t work.  The other thing is, I would say, take care of yourself, find somebody to talk to, find a friend, find a professional, make sure you’re still taking care of yourself.  It’s so easy to forget yourself when you’re worried about your sister, your husband, your daughter, whoever, your friend.  I think that just reminding, as a caregiver, selfcare, you need to get your rest, you need to talk.  You need to go exercise, you need to go do your stuff, too.  You’re as important to yourself as that person that you’re caring for.  It’s a very tough place to be, it really is. Joe:                 Yes, so true, Dana.  Look, I really connected with your article on how we need to focus about living stories, they’re so important.  That’s something that nobody really talks about.  Can you share your perspective on that? Dana:              Well, the way I was thinking about it was, I feel like you get so caught up in cancer, death.  Nobody sees anything in between and I don’t mean to be negative, but a perfect example of it to me is when I was diagnosed, my grandpa was 80-something at the time.  He was around in the early days, where you were diagnosed with cancer and you were dead.  I was diagnosed with cancer, and we laugh about it now, it’s not really that funny, but I was like, I’m convinced, I was diagnosed on a Tuesday and grandpa thought I’d be dead by Saturday.  He was just having a meltdown. I’m like, guys, it’s not a death sentence.  Let’s focus on the living things and things that are going on in these everyday stories.  This instead of worrying about it.  I stink at it.  I’m so fearful half the time that my cancer is going to recur and I’m not going to live long enough to do anything.  I was diagnosed when I was 32.  I was terrified I was never going to make 40.  I just think, at least for me, I got so hung up on stuff like that, you just miss out on everything else.  Cancer is not a good thing by any means, but there are things that awaken in you, to go and do what you want to do.  That’s the perspective, that’s taken me, in all fairness, a really long time to figure out. Joe:                 Absolutely.  We hear, you’re right, we hear all of these so negative stories about cancer, about death and dying, and about all of this negative stuff that really isn’t supportive.  Like yourself, I wanted to hear the positive stuff.  I wanted to hear the stories that let me know that there’s a light at the end of the tunnel.  I wanted to know that you could overcome cancer and have a life beyond that, you know? Dana:              Exactly.  I think that’s a really hard lesson to learn.  Again, in the instruction book that doesn’t exist, nobody tells you that.  Nobody tells you that.  It’s so hard to figure that out and see that it’s potentially not a death sentence.  Whether you’re stage one or stage four, in my opinion, it doesn’t really matter.  It doesn’t mean that everything stops today. Joe:                 Yes, absolutely.  If you were writing the survival manual that doesn’t exist.  Especially if you had a chapter for young adults because that’s a real area that is probably overlooked again.  What sort of advice do you have for younger folks who are forced to confront cancer and it’s the last thing they have expected, how do you deal with it all? Dana:              That’s a big question.  I’ve said it a couple of times, so I was 32, I was single, no kids.  I feel like in the culture today, when you think of cancer and you think of diagnosis, you think, like, my grandma, my uncle, older people.  At least, initially, that was eight years ago.  I was like, young adults, they are the forgotten people, we’re not the childhood cancer, we’re not these older adults, one in two who are going to get cancer in their lifetime or whatever it is.  We’re in the middle that nobody wants to think about, and nobody expects to get it.  That, to me, is almost the biggest struggle. My advice would be, this is so easy to say, and I know when I was diagnosed, I didn’t want to hear it, but it doesn’t mean that everything is done.  It doesn’t mean that you can’t go and do whatever you want to do.  It also doesn’t mean that you just have to listen to a doctor who’s going to tell you if you feel a lump or you don’t feel well or whatever the case may be, that you’re fine, you’re too young, don’t worry about it.  I’ve heard those stories before too and that always just sends me over the edge with young adults facing cancer, because I know many people who are kind of brushed off, like, no, you’re too young. To me, at least even at the beginning, fight for your body and make sure you’re getting the care and the treatment from medical professionals that you think is right for you, and don’t let them tell you you’re too young.  I’ve heard it, people have heard it.  If you’re already diagnosed and you’ve hit that point, what helped me was, I had a bucket list of stuff I wanted to do immediately that I refused to wait for anymore.  Not because I’m telling everybody, if you have cancer, that’s it for you, but use this as your wake-up call to go and do.  Don’t do the waiting, don’t wait around and just, someday I’ll do it. Just go do it, whether it’s something as silly as, I don’t know, being a tourist in your own town to taking that trip that you always wanted to take.  I feel like people just get so hung up on, you know, I got cancer at a young age, so that’s it for me.  It doesn’t have to be. Joe:                 Exactly.  I know that it’s such a cliché, but cancer was such an incredible wake-up call.  It made me realise that, yes, there is no time like now.  The past is gone, the future is completely shrouded in this unknown.  The only time to live your life is right now, isn’t it? Dana:              It’s so true.  I don’t like to give cancer credit for anything because it completely stinks, and it can just screw up your life plans pretty quick.  It can be a wake-up call, that you can turn into a positive and that brings me to another thing that I did that was an amazing little adventure.  One of my oldest friends, she’s about six years younger than me, I’ve known her since she was born.  I was her babysitter, we’re like sisters.  She was diagnosed with breast cancer two years after me, which was absolutely ridiculous because I thought I took one for the team, thinking nobody else was going to be affected this young.  It’s not that common.  We went through it together.  I was done and then she was done and we’re like, do you know what?  We’re not going to waste any more time on anything. She had come up with the idea, let’s do something, one new thing every single day for a year.  We called it life-it-up-365.  We did something new every single day for an entire year.  It was something as silly as learning to tie a tie, trying a new food.  Whatever the case may be, we each did our own things, some things we did together.  For that entire year, we did a new thing.  It was probably one of the most incredible things I’ve ever done, and I assure you, I never would have even thought of it had I not had cancer. Joe:                 Yes, fantastic.  I love it.  Life-it-up-365, is that what you called it? Dana:              Yes. Joe:                 Wow.  That should be a website. Dana:              Well, we had started a Facebook page.  She had gotten the idea from a lady that she had seen speak that had done something similar, and then we kind of did it and took our own twist onto it.  We always keep saying, we’ve got to keep this going.  Then life interjected again.  Yes, we need to restart that up. Joe:                 Yes, for sure.  I know that one thing that comes up for every single person who went through cancer is obviously the fear of cancer coming back.  I always get that before my regular check-ups.  How do you deal with it?  What would you recommend to someone who’s going through it? Dana:              I’ll be completely honest with you, I’ve struggled with it for a long time.  I’m eight years out and I still have fears.  I mentioned earlier, I still go talk to somebody because I am still fearful.  What didn’t help me, and this might help others, so it depends on the person, was a lot of people told me, that fear will go away and you’ll feel so much better in a year, two, three, five years.  It always sits with me.  I like to tell people, it’s okay if it doesn’t go away.  To me, it’s not the fact that it’s gone away, I’ve just gotten better with dealing with it.  Over time, I can just handle it better than I used to.  I think it’s normal, I think it’s common.  I think it’s absolutely right to fear it.  Don’t let anybody tell you that you shouldn’t and that you’re fine, you should move on.  I gob ack to some of the other things that I talked about with you earlier.  I still do a lot of writing, I still talk to somebody, just getting those words out there to me is what’s helped so much more than just keeping it bottled up.  I tried bottling it up a year after I was done, I tried bottling it up four years after I was done.  It did not work.  I tell people, talk about it.  Don’t be upset if it doesn’t go away.  It may not.  It may always be a part of your cancer journey, whether you’re a year out, six months into your treatment, or twenty years down the road.  I think any of that is fine. Joe:                 Yes, absolutely, Dana, do you know what?  Doing this podcast and I started writing a book, a lot of that stuff, in other words, doing something that is bigger than myself really gave me a better grasp, a better way of dealing with cancer, of dealing with life.  Did you in any way go through a similar experience with what you’re doing with the dragon fly angel society and writing your articles?  Was that similar in any way? Dana:              Absolutely.  I was shaking my head as you were talking with what you have done.  100 percent agree.  Writing a lot and giving other people my opinion or feedback and then reading other people’s feedback or articles or listening to a podcast and starting my website: The dragon fly angel society.  That kind of kept me going, that kind of helped me get my feelings out there, get my fears out there, and I thought of newly diagnosed Dana.  I still do. What would she want to see when she was told she had cancer?  I think back to all of the stuff I couldn’t find, like, didn’t know what survivorship was like, stuff like that.  That actually, over the last couple of years, to your point, I agree with you 1000 percent, that has helped me tremendously.  It really has. Joe:                 Yes, that’s fantastic because I really do think that is the sort of stuff that really gives you the point of focus on something positive, something that is really like an outlet for emotions, for negativity and it allows you to look beyond – it allows me to look beyond my own fears and frustrations and stuff like that.  Dana, tell me about dragon fly angel society?  What does it mean to you?  How did you get started? Dana:              When I was done with – well, I wouldn’t say that – when I was done with chemo and I had that initial crash and burn right after I was done, I kind of wanted to do something.  I volunteer, I work with the survival coalition and a couple of other organisations to just stay involved.  It helps to meet people.  I felt was still missing was, there was so little on survivorship.  I didn’t know if it was because nobody wanted to talk about it, like when they were done with their cancer treatment, they were like, peace out, I’m out of this realm and I’m not going back.  Or if people just couldn’t focus on it because obviously the most important thing is the diagnosis and the active treatment and getting cancer out of people’s bodies.  I don’t know. I was just like, now what do I do?  Nobody can tell me, we’ve kind of been laughing about it, but there’s no survivorship book or things, I have no idea what I’m supposed to do.  I was thinking about it for a while and then my mom and I were talking a lot and we had talked about this whole caregiver person, as well, and the lack of resources for them.  She and I were just talking and like, we want to do something, but we have no idea what to do.  Then we were both like, what if we do something on survivorship?  What if we help people who are done and then throw their hands up and say, “Now what do I do? What do their caregivers do?” That’s really how it got started because we just started talking about, what do we do?  I kept saying, I’m lost, I don’t understand what I’m supposed to do with my life and nobody has any information for me on how to be a survivor.  Then I would find resources here and three, and books that I liked, and ideas that I had.  We were just like, what if we just put all of those onto one website where we could tell people, hey, go here and if you like books, if you like websites, if you like writing or whatever the case may be, or you want to hear survivor stories, come to our website, we’ll put it all there and let you then choose your adventure.  I can’t give medical advice, I’m not a doctor or anything along those lines, but I can get people these resources in one spot, then maybe I could make it easier for them than it was for me.  That’s how we got it started. Joe:                 Yes, that’s fantastic, Dana.  I think when you were talking about what would you say to your old self, I felt that every step of the way, if I was thinking of when I was going through treatment, when the treatment is finished.  I feel like I found out about all of these resources that I’ve never heard about when I actually needed it at a particular time.  It’s so amazing, that I think that experience is almost universal, right?  We could have all went, why didn’t I know about this earlier? Dana:              Exactly. Joe:                 It’s fantastic what you’re doing and what you’re doing with your mum, because you’ve got the dual perspective, right?  You’ve got you, obviously you went through it, and your mum went through it with you and you bring it all together. Dana:              Exactly.  There are some decent resources out there that either a lot of people don’t know about or maybe people just don’t want to hear about until they’re done.  Then at that point they just want a break from it.  Then they don’t realise, maybe they’re like me and they don’t realise, two/three/six months down the road, two years down the road, shoot, I really do need something.  That’s why we’re like, come to our website and we’ll help you figure out where you need to go and get that professional advice you need, or a website you’re looking for or something like that.  it just seemed like such a thing that I wish I would have had to get started.  There are a lot of really good resources out there that I just don’t think a lot of people know about. Joe:                 Yes, absolutely.  Sometimes it’s just about connecting people to those resources. Dana:              Absolutely.  You’re absolutely right on that. Joe:                 If someone wanted to find out and visit your website, what would they do? Dana:              All they’d have to do, if you go to the website, the front page is basically our story, so if you’re curious to know about how we got started.  It’s more so classifications, do you like websites?  You click on the website box and then you can see if you’re looking for breast cancer or general cancer or young adult cancer, or whatever the case may be.  Obviously, most of it is focused on breast cancer, that’s what I know best.  You can go to the website and click, and it’ll take you onto this group or organisation, you just build your road from there. If you’re looking for books, if you’re looking for some magazines, survivor stories, it’s all literally on that front page and you just go to the initial website and then you can start your journey.  Like, choose your own adventure, if you will.  We kind of just put it all in one spot and then it allows you to go off to these other websites and organisations to find what you’re looking for.  It’s very easy.  Then we do some blogging.  We do newsletters.  We try to connect people through survivor stories.  Things like that.  All stuff that I wanted to see when I was done. We’re always looking for new resources, new people to write for us, it’s just my mom and me.  That’s basically what it is.  I feel like it’s a starting point for a cancer survivor or a caregiver.  Either right when you’re starting your diagnosis, there’s plenty of information, but the focus is more so when you’re done with your active treatment, where do you go from here? Joe:                 That’s really cool, Dana.  I love it.  Given everything that you know now, you’ve read all of these websites, you’ve read all of these books, you’ve obviously thought about it a lot, you’ve processed it from writing articles and your journal and everything else.  As a cancer survivor, what is the best advice that you could give to someone who has survived cancer and now they have to deal with life?  It’s a big one. Dana:              Just be patient.  Let yourself feel the path.  Don’t just, I need to go to four websites and I need to write four journal entries a day.  Write if it feels good.  Don’t write if it doesn’t feel good.  Just give yourself a break.  People will be giving you advice left and right and telling you this, that, and the other.  If you don’t want to talk about your cancer anymore for a while, or you don’t want to deal with it and you don’t want to go to a support group, or you want to go and see somebody individually, or whatever the case may be.  Do it.  I feel like we get so hung up on, well, this person said I should do this.  This person said don’t do that.  This person said become a vegan. This person said… just give yourself a break, listen to what your body and your mind is telling you and go do it.  Don’t stress about it.  If you never want to do anything with cancer again when you’re done, don’t.  I just feel like we get so hung up on what everybody is telling us we should do, what is your mind telling you, you should do?  If you want to talk about it daily in a support group, go do it, but I just think you’ve got to just let yourself follow what works for you and not what everybody is telling you to do. Joe:                 That’s such a great point, Dana.  What inspires you to live your life in the best way that you can? Dana:              A lot of it has to do with the fact that I feel like it was a wake-up call.  There was so much I wanted to do.  I had never been kicked in the butt, if you will, to get it done, for me, it was just, cancer or not, it was just, shoot, there’s all the stuff I wanted to do, I started making a list, I was like, man, whether I have cancer or not, I’ve got to get moving on this stuff.  That was like my wake-up call, my inspiration to – I’m not going to say no if I don’t want to say no, I’m not going to say yes if I don’t want to say yes. It just… I got to press a restart button.  In a way, that was kind of cool.  I moved to a different state, I quit my job and started something new.  I don’t know if I would have ever done that, had I not gotten sick.  Now, it’s like a little adventure.  What can I do next?  What’s next on my list?  That’s kind of fun.  It was kind of good to have that wake-up call. Joe:                 Yes, that’s fantastic, Dana.  What is next one the list?  Do you know?  Do you have some plans that you can share? Dana:              I was telling you, I just took the biggest trip of my life.  I wanted to go to Australia my whole life and I finally just went three weeks ago. Joe:                 Yay. Dana:              Yes.  At this point, I’m kind of like, I don’t know what I want to do.  That has been on my list since before I got sick.  That took a lot of planning and a lot of saving, so I just did that.  Honestly, I don’t know what’s next.  I literally just lived the biggest adventure that I was hoping to live in my life.  There are more places I want to see.  I’d like to maybe write a book if I could, that might be a next on my list.  I really want to keep the survivorship movement going and continue to help people who face the challenges like I faced.  I’ve said it many times, I’ve struggled immensely with survivorship and the emotions.  I was diagnosed with PTSD because of it.  I really had a rough go. I feel inspired to – maybe what’s next for me is kind of getting a little bit more of that out there and helping others who experienced the same thing as I did.  If I can get more awareness out there, I’d like to do that, too, I think it’s so important that people – maybe there’s nobody like me, maybe there’s a lot of people like me.  You’re not the only ones.  It doesn’t have to stink.  It’s a rough go.  It’s definitely a rough go.  There are good things you can do to get through it. Joe:                 That’s fantastic, Dana.  Thank you for being yourself and for putting yourself out there. Dana:              Sure, thank you.  Thanks for letting me chat away. Joe:                 No, I love it.  Thanks so much for your time.  I really appreciate it. Dana:              You got it.  Thanks again.  

Simple truth from Matthew Zachary of Stupid Cancer – know your rights and your choices in the quest to crush cancer. Matthew is a true inspiration, with stupid cancer empowering young adults to deal with cancer on their terms! Here is what we cover in this conversation: The invincibility bubble (AKA your life before cancer) How knowing your rights and choices can safeguard your future after cancer Dealing with scanxiety Stick with what you love during cancer Safeguarding your future as a young adult facing cancer Your lifeline during cancer and beyond The community behind Stupid Cancer and much, much more! Links The Stupid Cancer Show Matthew Zachary on LinkedIn Stupid Cancer Full Transcript Joe:                 Hey, Matthew, listen, first off, I want to start with, what was life like before cancer?  I know this was a long time ago, so you have to dig up in that memory.  What was it like, man? Matthew:         Fabulous and cancer-free.  You were invincible.  You could do anything you wanted, there were no obstacles ahead of you, blue skies, only optimism.  That’s a good thing.  You’re supposed to have all of that when you’re 16/17/18/19/20.  You need that invincibility to want to take on the world.  That was my life. Joe:                 Yes, it’s such a fantastic point you bring up, invincibility.  You know what, now that I think about it, it really was like that because nothing could happen, you were almost living in this bubble. Matthew:         It’s a good bubble. Joe:                 It’s a good bubble, yes. Matthew:         There are bad bubbles, but it was a good kind of bubble. Joe:                 Yes, absolutely.  Then you find out, they tell you you’ve got six months to live.  What was that like? Matthew:         Yes, the last thing on your mind is getting sick when you’re young, let alone getting devastatingly sick when you’re young.  It was, to say, surreal is an understatement.  It was just denial.  It wasn’t possible that this could happen to someone like me, at my age.  It’s not exceptional for someone to think that way in general, but when you’re just a kid and you get sick and they say you probably won’t be here in six months, how do you process that?  It’s just denial.  You’re in absolute consistent denial. Joe:                 Did you come out of that somehow? Matthew:         You never really come out of it.  I guess just by not dying it helped the narrative that I wasn’t dying and then you keep on hoping that you don’t die.  Then eventually time moves on and you figure out that you need to live instead of worrying about dying.  That’s the transformation. Joe:                 Yes, exactly.  Do you know what, Matthew, I don’t know about you, but I have so much advice to share with the old me who went through what was I was going through, through cancer and going through treatment, because I really had no clue what was going on.  If you had a chance to do something differently, if you could sit down with your old-self, what would you tell him in retrospect to just make it easier for yourself? Matthew:         One of the most important things to me these days is to guarantee if you’re sick, you know your rights and you know your choices.  I would go back to myself 22 years ago and give that version of me his rights and his choices.  All the things you should be told right now, that you’re not going to find out anyway.  Being able to guarantee that someone diagnosed today is made aware of their rights and choices is the most important thing because you don’t know what you don’t know, your life is in jeopardy.  In my case, I was facing chemotherapy that would have put permanent nerve damage in my fingers and toes. At the time, I was an aspiring concert pianist and I couldn’t play because of the tumour, but if I had any chance of living, I’d rather be able to rehabilitate myself and play again, versus going on a chemotherapy that would have given me this devastating side-effect.  If I had lived five years and died but being able to play piano, that was more important than living 80 years and not being able to play the piano.  I was not made aware of that choice, except that I had an uncle who was a geneticist that nudged into my decision-making and helped me make a better choice that was better for me. Not everyone has a miracle uncle who knows these things that swoop in and tell you these things.  If I had to go back and tell myself, I would have told myself what my uncle told me, to just don’t do this, you’re going to be fine.  As long as you make a decision that’s the best for you. Joe:                 Yes, you’re so spot on.  There are so many things that you have to take into account.  I was lucky because I was told that if you go this chemotherapy way, it might affect you playing your guitar and if you go this way, it might affect your fertility.  You have to know these things otherwise you’re screwed, right? Matthew:         It just comes down to choice and it’s hard.  22 years ago, there was no internet.  I had nothing to look through.  Today, there is way too much internet, so you don’t quite know what to trust.   We’ve come 360 degrees back to the same confusion out there.  Whether there’s nothing to know about or too much to know about, it just comes down to who is going to help you figure that out. Joe:                 Yes, absolutely.  One the other side of it, in terms of people who help you through it, friends and family, a lot of folks I go to, they have people who disappear from their life for one reason or another throughout this whole cancer thing.  What was that whole experience like for you? Matthew:         Any one part specifically then, or just in general? Joe:                 Yes, just in general, friends and family who maybe you expected to be there, and it didn’t work out that way. Matthew:         My personal experience may not be that of other people, but I’ve heard that this is not uncommon what happened to me.  People go either this way or that way, they never go right towards you or right behind you.  They’re either full on, I’m here to help, whatever you want, whatever you need.  My parents did that, my brother did that, my family did that.  My college friends, my high school friends, some of them just bailed.  Can’t deal with it, I’ve got to move on.  I’m going to grad school.  Living their life, sorry, man.  That was painful. That they just summarily rejected me.  I was too much of a burden for them to be sick and complaining all the time.  I didn’t really focus on that.  I focused on the people who came to the hospital and spent every waking hour talking about me and talking to me and sending cards and flowers.  Again, I didn’t know what to expected.  I didn’t wake up saying, “I can’t wake to get cancer to see what my friends do.” I just rolled with the punches, like, fine, you don’t want to talk to me, I’ll talk to these people now because they’re the ones that care about me.  I guess it was unexpected that the ones that did flee were the ones that fled, because some of them were the least likely I would have thought to be behave that way. Joe:                 Yes, it’s interesting.  I guess, for me, like you said, also, when I was going through the experience, I was in the zone, but I guess after cancer, I looked at it and I went, these three close friends I had, they just disappeared completely, and I was trying to rationalise it because it didn’t make sense.  Why did it happen?  Do you know what?  I still don’t have a good reason. Matthew:         Yes, what are you going to do?  You’ve got to cut your losses when you.  It’s going to hurt, you didn’t expect it to hurt because you weren’t expecting it to even be there in the first place.  It is my hope that people who get sick have lifelines and have handrails and guardrails and support.  Some don’t, some do.  It’s regrettable but sometimes you’ve just got to go it alone. Joe:                 Yes, that’s it, man.  The other thing that all of us go through is having the fear of cancer coming back, especially as you get closer to every check-up, you start thinking about it.  How do you deal with it?  What sort of advice do you have for someone who maybe is going through it right now? Matthew:         Yes, we call that, “Scanxiety.” Joe:                 That’s a nice word. Matthew:         I didn’t make that up.  That was told to me.  Scanxiety is the never-ending fear that it’s going to come back in some way, shape, or form.  Or for those people even living with it, that it will get worse than it would get better.  Metastatic cancer is a really big deal in what we do here at Stupid Cancer.  I like to use the expression: Step into the pain.  I got that from a friend of mine and I’m not really original, I just recirculate.  Stepping into it, owning it, it’s going to happen, you cannot control the outcome of what’s going to happen.  As difficult as it sounds to just do that, what choice do you have?  You either worry about it and panic and get into a disorderly array of stress, or you just say, “This is going to happen, and I will deal with it when I get an answer.” Joe:                 Yes, that’s a great way to look at it.  That it’s separating what you can control from what you can’t control. Matthew:         There are multiple kinds of Scanxiety too.  I’m now 22 years now from brain cancer and I still get headaches and my brain is like, “Is that cancer again?” Probably not but it’s still there, the trigger never goes away.  It’s been owning the trigger.  Yes, time makes that a whole lot better.  I’m not saying that if you’re a year out, it’s the same as being 20 years out.  It just really is a perspective on how things you can control, things you can’t control, and just owning the unknown. Joe:                 Yes, exactly.  Matthew, I wanted to ask you about that, as well.  Like, doing this podcast and doing my writing and all of that sort of stuff, it really helps me to find a new meaning, almost like an additional meaning of things that I do with my life that really take me away from what you call Scanxiety, is really being able to focus on something bigger, something positive, something that is the way that it is bigger than myself, because that helps me put cancer in its place.  To stop worrying about it and worrying about it coming back.  Do you have the same thing with what you’re doing with similar things, to what you’re going through with Stupid Cancer?  Just things that you do? Matthew:         I think it’s important for people to find an anchor in their life that helps ground them.  That was a really bad metaphor, but my whole point is that if you have a hobby, a friend, you like to write, take pictures, don’t let that fade away in the face of your challenges.  I happen to be a concert pianist, I was sick, I couldn’t play, but I was able to just sick down every day for an hour and just do anything.  My fine motor coordination wasn’t working but I could still play a little bit.  That was all I needed to stay grounded.  I know today in social media, there are plenty of blogs and people journal, and there’s so much more people can do these days than you could back then. Express yourself, share your story, those are not monotonous platitudes to talk about.  Those are authentic ways to do that.  At Stupid Cancer, we advocate for people to express themselves, share their stories, talk about what they’re going through, connect with their community, meet people like them in their isolation and take ownership of the fact that they’re a part of a huge family of people that care about them and won’t judge them. Joe:                 Yes, not being judged, that’s fantastic, man.  Both times, you went through a few name changes, how did that come about and what were those changes like? Matthew:         I believe in something called the minimally viable product, which is when you don’t know how the crowd is going to respond to you, but you let the crowd determine your path.  The best thing I tend to you is, many people might remember that FedEx used to be called Federal Express.  People just started calling it FedEx for short because we’re lazy, so they legally changed their name from Federal Express to FedEx.  Now we don’t give it a second thought.  Following the crowd, letting the crowd carve the river for you to flow through.  I had an idea for a couple of things when it started. It worked really well but at the same time, the crowd decided that Stupid Cancer was what we were going to be known by, known as, and known for.  After all the weird names we went through in the beginning, which held historical credibility.  In the wash, the community decided what we were going to be.  That has been the best learning curve ever in growing a business. Joe:                 Well, that’s really amazing.  What are the people telling you today?  What are they saying?  What is the direction that you think it’s going to go to now? Matthew:         We’ve spent the last 11 years yelling and screaming that young adults are treated unfairly, that we’re invisible in the cancer spectrum, that we are largely ignored in clinical trials, the statistics and mental health and psychosocial information, the patient navigation and doctor physician relationships, early detections, survivorship, metastatic.  All the things that exist for the bulk of people who have cancer, over 50, do not exist at all in any related age-relevant manifest or the Gen X/Gen Y/Gen Z communities. Which are millions of Americans.  I’m not dismissing the finite nature of how small the population is, but we’re talking about millions of people.  After yelling for 11 years, the world is finally listening.  What is it that they want us to tell them?  The community wants equity, equality, parody, justice, dignity, that we are all treated age-appropriately, we’re given the same access, the same rights, the same age-appropriate care, and incentive on what makes young adult cancer difference.  We’re not 80, we don’t care about our summer homes and Medicaid.  We don’t care about out bottles and our toys but dismissing the value of there being different age groups, we’re not better or worse, we’re different. Those differences need to be part of medical care and part of models of care.  That’s what we’re waiting for.  That’s what the crowd is telling us.  To get some policies in place, to get fertility preservation mandated, get age-appropriate mental health care in place, help me navigate how to talk to my children, how do I start dating again?  What do I do with my career?  My insurance is terrible.  Things that are pretty crappy when you’re well are just made worse when you’re sick and even then, it’s not being managed appropriately to help a 22-year-old get through cancer on their terms. Joe:                 Yes, exactly.  I’m going through IVF process right now with my wife.  It’s interesting because chemotherapy has kindly killed off the cancer, but it’s also killed off most of my sperm.  It’s an interesting and pretty stressful process.  I guess like a lot of young adults, that’s something that you may not necessarily even consider when you’re going through treatment, right? Matthew:         Well, the narrative over the last 11 years is: Well, why young adults?  Why are you so special?  It’s like, we’re not special, we’re different, which is what I said before.  How are you different?  Do I really need to tell this to you?  We start with fertility, when you’re six or sixty, that’s not an issue.  Your right to be a mom or dad one day is infringed upon when you get cancer.  It is up to the doctors to tell you, you should bank your sperm, freeze your eggs and here’s a way to do it that’s relatively inexpensive. Or, hey, your insurance covers this, you should do this right now if there’s time.  The fact that that conversation doesn’t really happen that often is part of the frustration that drives the narrative of young-adult cancer.  It frustrates me.  If you were to tell me that your doctor didn’t have you bank your sperm before your treatment started, that would infuriate.  If that is true, allow me to be infuriated because that’s a liberty that you have to know about.  Going back to choice, if you are not made aware of that choice, plus your doctor didn’t tell you that, and you didn’t have a peer to talk to, to say, “Hey, you should tell your doctor about this.” Then who is going to help you make that choice?  Who is going to make you aware of things that you could never be aware of before?  IVF, I have kids, they’re IVF babies.  It costs and arm and a leg, should you really have to pay that much money to be a dad?  No.  That’s what makes this different.  That’s what makes this relevant and important. Joe:                 Yes, exactly, that’s such a great point.  I really want to hit on something that you really keep on bringing up over and over again, is choice.  It’s having the choice to do something.  You know what, like I think I’m probably speaking for everything who has gone through cancer, you really a lot of the times you feel powerless, you feel like you’re not in control, you don’t really have choice, not only about treatment, but choice over appointment time.  You don’t have choice about the specialist.  You actually do but you don’t realise it, right? Matthew:         A lot of times, probably too often, you’re at the mercy of what you’ve got.  You’re at a point of insanity and panic and everything is all fuzzy.  Where it’s hard to make objective decisions.  If you’re terrified and you want a second opinion, you might be scared to get a second opinion because it could be worse.  You’re stuck with what you’ve got.  It always helps to have a helping hand in the form of a peer or a community that has been there.  Whether you’re at a major cancer centre or in the middle of a community with 50 patients and 3 doctors, your right to have a community, peers like you to help you fill in those blanks and those gaps is even more important. The social aspect of going through cancer is just as relevant as the medical aspect of going through cancer.  If you had been introduced to other young adults with cancer when you were diagnosed, we would have probably told you, the collective we would have said, “Hey talk to your doctor about getting your sperm banked because they’re probably not going to tell you about that.  Or you might be lucky to be told that.” You’ve got to think, what is in the mind of that doctor? Man or woman, or carer, where it doesn’t occur to them that you’re in your fertile years and they know chemotherapy can create infertility, that is a known medical data point for 30 years.  I keep coming back to fertility because it’s so tangible.  It’s something that’s so tangible, it’s tactile, it’s infuriating and it’s the most relevant conversation that defines young adult cancer. Joe:                 So true, Matthew.  All the amazing work that you put into Stupid Cancer, all those years.  I think you said at one point, I read about it, that after all of these years, you became an overnight success.  What made the difference? Matthew:         It’s like, I never heard of you.  Yes, we’re the 11-year-old company that just made it big yesterday.  That’s really ridiculous, but I don’t care about that, as long as you know about us, whenever you know about us, that’s great.  We’ll drink the cool-aid and we’ll move on.  I think the ongoing confounding aspect of running a non-profit organisation is endless challenges and growing and scaling.  The need is never over.  You can’t reach 72,000 people every year the day they’re diagnosed.  It’s improbable. The frustration is, how can we do a better job getting the word out through our existing survivor community, programs like these will enlighten people to know that we’re an organisation that is in a very unique space right now.  Coupled with the challenge that we’re few and far between.  You know, you go to Iowa community cancer centre, no offense to Iowa, there are not going to be a lot of young people there.  If you go to Sloan Kettering and B.  Anderson, you have the privilege of being able to go there.  Yes, they’ll probably put you in a bed in a ward with other young people out there because they know that’s important, but just finding out that you have a community is the most important thing for me for us to represent and stand for. You need that handrail.  I talked about how when you want to buy a car, you research a car, you test-drive a car, you read magazines and other people’s reviews of cars.  No one hopes to go on some pharma drug one day, you don’t test pharma drugs just to see which one you’re going to get prescribed when you get cancer.  You’re entering almost a marketplace what you’ve never researched.  Who is going to be your Yelp?  Who’s going to be your Trip Advisor?  That doesn’t exist right now. I think the role of every patient advocacy group in cancer is to try to play part of that role.  If we can be Yelp and you can be Trip Advisor and you can be Trivago and you can be Good Eats or whatever, yes, we are all trying to be that lifeline, that handrail. Joe:                 Yes, exactly.  The lifeline to a person whose life has been turned upside down. Matthew:         Yes. Joe:                 Thank you so much, Matthew. Matthew:         My pleasure.  My honour.  Good luck with everything. Joe:                 Thank you.  

Full Transcript Hey, my name is Joe Bakhmoutski, I am the creator of Simplify Cancer and it’s weird that with cancer, you end up in this foreign country where you don’t speak the language, you don’t have a map to get around, and it’s scary because you don’t know who you can trust or how things are going to play out, and you have to figure out how everything connects together… And you can’t stop thinking about it because every twitch, every ache and pain, and you ask yourself: is this cancer? This constant worry, it’s a curse because you can’t think straight. But it doesn’t have to be that way! You can tackle cancer by learning it’s every move, what you can expect, and what you can do about it. In no time at all, you can become an expert on your own cancer, and that puts you in the driving seat, puts you back in charge, and I’ll give you 2 reasons why: First reason is external. You go to to another level of confidence when you dealing with cancer, it gives you a huge lift when you are working your specialists and waiting test results and talking to your family about because you’re in charge, you know what’s going on. When you start asking the right questions and all of a sudden, you and your specialist are having a conversation like equals. Oncologists, urologists, surgeons, they know that it’s not like you’re questioning their expertise. Honestly, they love patients who know what’s going on because they can be direct and they don’t have to dumb it down for you. Second reason is internal and it’s even more powerful, it’s knowing that you are now in control, you know what the next step is and what your options are so you can make informed decisions about treatment and follow up and the life beyond cancer. So how do you get on top of it and become what I call the next step expert? You don’t need much time, in fact you only need about 5 minutes a day because you are going to leverage the knowledge that others have accumulated, those folks who went down that road before, who had the same cancer, who went through the same treatment. They have already survived cancer, or maybe they are just 1 step ahead of you, or even at the same place you are right now, they know what you are going through, they know how scary it all is, and they will tell you everything you need to know. So let’s say you just got diagnosed and now you are about to go and see your oncologist for the very first time. How do you prepare? I suggest you go to a reputable site like Cancer Council here in Australia, or National Cancer Institute in the US or Macmillan Cancer Support in the UK and you read up on your cancer, just enough to have questions, and trust me, you will have questions, we all do, and then take those questions to the online forum for your cancer, and this forum it’s a community, it’s folks like you and me who get together online and they answer questions and share their experience because they’ve been through it, they know exactly what it’s like, and they want to help. What can you expect from the procedure next week? How long does it take for your hair to grow back after this type of chemo? Will I be able to work during this treatment? Who is the best specialist to work with in your area? These are the things that nobody talks about that you need to know! I can’t tell you how much it’s helped me and so many others, this is huge! True story from a testicular cancer forum. Plus, it’s completely anonymous so you don’t have to edit anything out, you can tell it like it is, so there is no awkward or uncomfortable questions. Talking to folks who have been through it gives you confidence over what is happening and what you can expect from treatment, and all you need is 5 minutes a day and you can get all your questions answered by people who really get you and who know exactly where you’re coming from. To save you time and hassle of searching for it, I will send you a list of the best online communities in a PDF, so put your name and email below and I’ll send it to you right away. I will also send you my best strategies on dealing with the mind games that come with cancer and I will also keep you up to date on the Simplify Cancer podcast,  to make sure you don’t miss out on anything that is relevant to you right now. You are no longer just waiting for things to happen to you. Now, you’re in charge because you control the flow of information. Now, you have the knowledge and the capability to ask qualified questions and make informed decisions Thanks for watching, put your name and email below, click Submit and I’ll see you soon.

Maybe you’ve just been diagnosed, or maybe you’re going through treatment, or maybe it’s someone you love and you’re trying to get through it together.  Whatever the case may be, you’re on this crazy roller coaster of emotions and feelings that are hard to put into words. That’s what Jill and I are talking about today, practical ways to take charge of your life and your emotions as you tackle cancer on every level. Here is what we cover: Overcoming guilt How putting a name to your feelings helps you deal with them Dealing with depression during cancer Carer’s mirror of emotions How to tackle fear of the unknown and much, much more! Links Episode 015: When Your Loved One Has Cancer Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Episode 018: Finding The Light Amidst The Darkness Full Transcript Joe:                 Hi Jill, I’m really excited for us to be doing this again. Jill:                   Thanks, Joe, I’m pleased to be here. Joe:                 That’s fantastic.  Jill, I thought we could talk about a couple of things today and maybe we can start to talk about some of the phases that you go through emotionally, when you transition across the cancer continuum, when you go from your diagnosis and treatment and survivorship.  How do you go through these emotions, the whole range of it?  How do we deal with them?  Should we start looking at our diagram here? Jill:                   Yes.  A diagram that I quite often refer to is called the Valley of Despair.  There’s been a lot of research by well-regarded people and it’s the process of transition of your emotions starting off.  It becomes like a rollercoaster ride, anxiety, happiness, fear, threat, guilt, depression, hostility, gradual acceptance, and then moving forward.  More importantly, how does that then relate back your cancer continuum? When you’re just prior to your first session and your diagnosis, you’ve got anxiety, you know something’s not quite right, you’re worried about the future, so anxiety builds with the fear of the unknown.  It’s like, what’s going to happen to me?  How do I deal with this?  What if?  The way to deal with your anxiety is bring yourself back to the moment, the present time.  Don’t dwell on what’s happened in the past, because that’s what we base our experiences on, what’s happened in the past. We know what’s happening at the present time and none of us can dictate what’s happening in the future.  That’s where anxiety lives, it’s around that future state.  The anxiety and the worry that you have, oh my goodness, I’m going to my oncologist, what are they going to tell me?  I’ve just had tests, I know something’s wrong, what if?  It’s going through that stressful time before you actually have your initial diagnosis. Then you get to the point where, okay, I’ve been to the oncologist, I have been diagnosed with cancer, but you know, you’ve got a definite thing that you can associate with.  It’s like, yes, I have cancer.  In a way, you’re sad that you’ve got cancer, but you’re happy that you’ve got a diagnosis.  That fear of the unknown now has a name to it.  That’s coming through your diagnosis, as well. Joe:                 I’ll just swiftly jump in there, Jill.  I think also the happiness can be associated with maybe an initial treatment, like in my case, I know I had an operation for testicular cancer, to remove a testicle.  I was told the cancer is gone.  I thought, I’m on top of the world, fantastic, I can move on with my life.  Little did I know that three months later, it actually turned out that the cancer had spread and so yes, it was like you said, like a rollercoaster. Jill:                   Yes.  That’s what the whole process is, it’s never just a straight continuum, like you’re faced with different experiences along the way.  That’s where you need to tune into what’s actually happening, be aware of how you’re feeling.  It’s okay to say, “I feel…” Putting a name to your feelings helps you deal with them.  It’s like, I know when Sam was first diagnosed, we knew that with Sam’s prostate cancer, he was having trouble going to the toilet, going and urinating.  We didn’t know whether it was kidneys, we didn’t know if it was prostate, we didn’t know whether it was obesity. We didn’t know what it was.  It was like that anxiety, what happens if I can’t wee anymore?  It’s like… When he went off to the oncologist and had all of his tests and it came back that, yes, you’ve got prostate cancer.  Okay, so now we know what’s going on, he went in and had his biopsy, and they identified where it was in the prostate.  Then they put a plan together and it was like, okay, we’re taking control of this again.  That happiness comes in there.  Then you move really quickly back from the happiness to the fear.  Yes, I do have cancer.  I have a plan in place, but what if, what happens when?  Quite often, you spin off into, no, this isn’t happening to me, this is not real, maybe they’ve got it wrong.  Seeking those opinions of others, having trust in your oncologist, having trust in your family.  That’s bringing all of that back in. Joe:                 Yes, exactly.  As you say, you start questioning yourself, you start saying things like what have I done to deserve this?  Why is it happening to me?  What’s going to happen if I die?  What about my partner?  What about my family?  What am I leaving behind?  What’s my legacy? Jill:                   Exactly.  What happens to my partner, my child?  What have I done to make a difference in this world?  What am I leaving behind?  What will I be remembered as?  A good, honest person that’s been kind and loving and caring, or a person that’s got cancer, that’s been totally consumed by everything.  The you start to have your choices again.  Then you start to bargain.  It’s like, well, if I do this, maybe it’ll all go away.  I know, and I look back and smile, when same was first diagnosed, it was like, yes, we did seek other tests, other opinions, and then it was like, okay, if Sam drinks pomegranate juice maybe this will go away. If we eat more meals with cabbage in it, maybe this will go away.  You start to do this whole bargaining thing.  Looking back, we were so caught up in that, that it was consuming, because we thought, if we do this, maybe everything will be okay, rather than just having the trust and the confidence.  Yes, you do have to have your action plan there. Joe:                 It’s the guilt, isn’t it? Jill:                   It is, yes. Joe:                 It’s the guilt that you did something wrong that cancer might be happening for a reason, whereas, the truth is, it’s a lottery, we know, the research tells us that it’s completely random, but we feel guilty about not leading the right lifestyle, not making better decisions along the way, not having done enough in terms of what we talked about, legacy, in terms of being present, in terms of your career and whatever, that all of this guilt just suddenly comes up, doesn’t it?  It just takes over. Jill:                   It does.  It can be quite consuming.  It can take over your life, that whole guilt feeling, that, was it because I was mean to a kid at school when I was at high school?  Is it because I haven’t spoken and am I now being punished?  Is it because my wife and I argue, and this is a way that the greater being is showing me and bringing me back to be a good person.  It’s going through that whole guilt.  If you allow that to take over, you actually feel defeated.  That’s not good for anybody, mentally or physically.  When a person has cancer, feeling defeated means that you’re giving the control to the cancer. That will take over your body, that will define who you are: I am the person with cancer.  It’s not hiding from it, but it’s not being defeated by it.  Have that fighting spirit.  It does that you a little while.  It took Sam a while not to feel defeated.  You do become introspective, you do go through depression.  I saw Sam change from a happy go lucky person who always had his own opinions, to being a person that just wanted to sit on the couch and do nothing, he wanted to sleep.  I recognised that that wasn’t normal behaviour for him.  Once again, we went off to the doctor and Sam was diagnosed with depression.  That took a toll.  It was like I’d lost my life partner. Yes, he now had cancer, but he had disappeared.  It was like, that’s hard to deal with, from a support person, as a lifelong partner.  It was like, I want that person back.  You then, as a support person, put in a lot of extra energy to make sure that the person that’s being diagnosed is getting the best care and the best treatment available.  You’re always on that watch.  I’m forever vigilant, even now, even Sam’s into the survivorship part of the continuum, but I’m forever vigilant, making sure that is he okay?  It’s quite draining from a carer’s point of view, as well. Joe:                 Yes, then we talked about depression and that was probably the really lowest point of this valley of despair.  Guilt is there, as well, all of these really negative emotions that bring you down.  Jill, one of the things that really helped me, and this probably happened somewhere when I actually started treatment, for example, when I was on my chemotherapy, what really hit home for me was one day, I feel like I accepted cancer, it sounds so ridiculous when I say it.  Obviously, it’s happening.  I think I was in denial. I think that’s why a lot of these conflicting emotions were coming up for me, things like guilt and being threatened and fear, it’s because I didn’t really acknowledge it, I didn’t really deal with it.  When I finally realised, yes, it’s happening, it’s here, it’s not part of it.  It’s almost like another being, that’s almost next to me.  That’s how it helped me to put it aside and say, “Well, yes, cancer is here but it’s not inside me, it’s here on the side.” That kind of helped me a little bit to come out of this really negative space and to come out of it and try to actually deal with it in a proactive way. Jill:                   Yes, definitely.  It’s acknowledging, not letting cancer define who you are, but acknowledging, yes, it’s there.  Once you actually give it a name, you can then determine what you’re going to do with it.  By avoiding that whole situation of no, I’m in denial, it’s not really happening to me, you’re avoiding what the issue really is.  Yes, you do have cancer.  Then it’s like, what are we going to do about?  Once you’ve defined it and acknowledged that it exists, don’t let it take over who you are as a person.  Yes, it’ll take over your life for a little while, while you’re going through all of your treatment and stuff like that, but don’t let it define who you are.  You’re still your authentic self.  That’s what you need to stay true to, rather than being something or somebody that you’re not. Joe:                 Jill, just talking about looking at all of these stages.  We talk about the person that’s going through cancer diagnosis, through treatment, and obviously linked to survivorship.  In terms of your perspective, as the partner, was this a similar journey, or how was it different for you, because you obviously had to support Sam through it?  What was that experience like? Jill:                   For me, as a carer, I went through all of those range of emotions, as well.  Right from when we knew something was wrong, before the diagnosis, I was worried, what is it.  That anxiety.  We all have, especially if you’ve got a lifelong partner, you’ve got your life plan.  Yes, I’m going to get married, have kids, experience things with my partner and live a long and productive life.  When something happens and goes wrong, I started to think, is my life plan changing?  It’s like, you have to rethink, not just Sam, who he was and what he was dealing with. What does that mean to me?  Am I going to lose my lifelong partner?  Is my life plan going to change?  The anxiety there, and that still happens, especially when Sam comes up to his regular check-ups, it’s like, is it going to be okay?  That anxiety.  This roller coaster ride just doesn’t go in one direction.  You can go backwards and forwards, depending on what’s happening in your life.  Then once Sam went to the oncologist and was diagnosed, I was happy that he was doing something about it.  Then it comes back it. Oh my goodness, what are we going to do?  That fear of the unknown again and then feeling a threat.  Yes, my partner might be taken away from me.  I didn’t go into depression.  The way I deal with it is to define it, have an action plan, then I feel like I’m in control.  I had my plan, my plan a was to be with Sam as my lifelong partner.  I had to think about what my plan B might be.  I then had to consider, what if he’s not in my life?  Would I survive?  Thinking about that.  Yes, I did go through denial, no, this is not happening.  If we go on a holiday, maybe we’ll forget about this.  I don’t think I ever got to the point of feeling defeated, because I was determined I was going to do everything possible to, one, help Sam get through it, and two, help me get through it.  If I ended up being defeated, I wouldn’t be able to support Sam.  That’s a fine line on your emotions.  You just have to keep it in check. You just have to acknowledge that that may occur but keep it in check.  Hostility.  Yes, I was really angry.  I was like, why is this happening to us?  We’re not bad people.  In the world as a whole, there are some bad people out there, why wasn’t it them?  I was really angry.  Why did it happen to us?  We’ve got family, friends, work colleagues, why was this happening to us?  It’s like, jeez, what are we going to do about it?  The way we dealt with that was talking to people, that communication with the people around you, and then we found that they became supporters of both Sam and I.  Our friends and family would do regular checks, how are you going? Are you okay?  Is there anything that we can do for you?  Having that network helped us along the way, which then took us into gradual acceptance.  Sam was diagnosed with prostate cancer quite a while ago.  He has had treatment.  His last check, which was over a year ago, he was travelling really well.  The cancer had shrunk to a minute section and it hadn’t spread.  It was like, okay, his prognosis was good.  His life expectancy was going back up, which then gave us hope that there may be a future.  Now, Sam’s coming up to his check-up again.  I’ve gone back to feeling anxious about it.  The anxiety.  What happens if something changes. There’s always that fear of the unknown, but I know once he goes in and he gets the results of his tests, we’ll then be able to put our action plan back in place and keep moving forward.  Always moving forward.  Sometimes you get so overwhelmed by: I have cancer, my partner has cancer, that you feel like you’re marking time, that you feel like the whole world is stopping around you.  By acknowledging that it exists, having plans, having your support network around you, both you and your partner, the carer, you feel like you’ve got way forward. Joe:                 Also, I want to come back to something we touched on earlier, Jill, about looking at yourself and thinking about your future life and how that looks like, because for me, that’s definitely changed.  I think in a more positive way.  If we talk about the other end of the spectrum, where we talk about moving forward, I think that’s helped me to deal with these check-ups and the unknown that comes with that, was finding new meaning in things, or having different things, for example, working on this podcast.  Writing.  All of those things give me an additional meaning and a new direction that really fuels my perspective with something different.  Did you have a similar experience? Jill:                   Very.  Exactly.  It’s like looking for the positive in everything that we do.  Yes, there’s a positive and negative.  There’s that balance.  Rather than dwelling on the negative, with everything, enjoy the moment that you’re in, enjoy the experiences that you’re having.  Yes, you’re going to have challenges along the way, but change your perspective, like you mentioned, on how you feel about things, how you view situations. Think about where you want to put your energy.  Do you want to put your energy into being sad and angry?  Or do you want to put your energy into something that you can actually physically do?  Enjoy the people that you’re with, because we’ve all got a lifelong plan, life’s finite, take the moments that you’re in and make the most of them.  If your child smiles, be happy about that.  If your wife achieves something, be happy for her.  With Sam, I get enjoyment out of little steps forward that I can see him making. For me, personally, I’ve gone off and I’ve done studying.  I’ve achieved.  Sam supported me in that.  Changing that perspective.  Feeling like you’re back in control of things, rather than saying, “There’s nothing I can do about this.” That whole perspective, be in the moment.  Enjoy what’s going on, change your perception of what’s happening around you.  Have that situational awareness. Joe:                 That’s fantastic, Jill.  I think this is a perfect lead into talking about addressing those needs that you have across the spectrum of Maslo’s Hierarchy.  Do you want to give us an overview of what that is and then we’ll probably dive into each stage and talk about some specific tactics to deal with it? Jill:                   Maslo’s Hierarchy of needs, and it’s formed in the base of a pyramid or a triangle.  The base is physiological.  The next step up is safety.  The next step up is love and belonging.  The next step us is esteem.  The top of the pyramid is self-actualisation.  Going right back down to the bottom physiological, that covers off breathing, food, water, sex, sleep, homeostatis, and excretion.  When you’re at pre-diagnosis stage, you need to listen to your body, what is your body telling you?  Something is different in one of these areas.  The hierarchy of needs is starting to be threatened at the foundational level.  As we all know, if a house doesn’t have strong foundations, the house doesn’t stand.  Look at your nutrition, your exercise, follow-up, get those opinions, get your diagnosis happening, look at what your treatment plan is. Joe:                 Also, into that, that one of the things that really affected me, even after the diagnosis was that all of a sudden, every single thing, every little symptom in your mind is now about cancer.  Headache, is that a tumour in my brain?  All of a sudden, and again, this came back to taking those questions and looking at them objectively.  How I would do it in practical terms is the exercise that I call: The outcome map.  I literally take out a piece of paper and I draw out whatever that symptom is, and I write down that the options are and the likelihood against each.  That makes it real for me. Okay, now I can look at it objectively because it’s now out on paper and say, yes, you know, I’m probably completely exaggerating this.  If in another case, if I think, well, actually, yes, this could be related to cancer, or it may be something else that needs attention, then I take that, and I make a decision right there.  Then to go and see my GP or writing down a list of questions for my next oncologist appointment or asking an oncology nurse.  All of those things, monitoring yourself and getting in touch with yourself, allow you to go back to a position where you feel threatened on a most basic level, to actually trying to have an action plan. Jill:                   Exactly.  In project management, there’s a term called: Risk management.  It’s identifying the risks, all the things that could go wrong.  This helps you overcome your anxiety, as well.  If you can list down all of the things that you’re thinking about that might happen in the future, you can then end up with a mitigation.  If this happens, then I can do this.  Once again, it’s taking control, it’s having that plan, having a way forward with all of this.  It comes down to the safety, which is the next rung on Maslo’s Hierarchy of Needs. It’s around the security of body, of employment, of resources, of morality, of the family, of health and property.  Doing that whole risk management, what happens if this happens to my body, what happens if this happens to my job?  What happens if we don’t have the money to have our house?  What happens if I become mean and angry?  My morality.  What happens to my family?  What happens to my health?  What happens to the property that I have?  It’s all about that action plan, choosing the right specialist, getting a second opinion, if necessary.  Letting your work know. Supporting your partner.  Letting your friends know that you’re going through this, so that your support network becomes a safety shield around you, that you can actually start to deal with some of this, but also be mindful that your carer is going through this, as well, so supporting your partner both ways. Joe:                 Yes, absolutely.  I think you mentioned having your circle of people in your life, those people who truly care for you and support you.  That’s definitely one of the things about it, is being transparent about what you’re going through, both as the person if you have cancer, or if you’re the partner of someone with cancer.  It’s really important to open up and say, “Yes, this cancer this is driving me crazy.  Yes, I really have no idea what’s going to happen and I’m afraid.” Saying, “I need help with this.  I need help with getting to the hospital.  I need help with doing the groceries.  I just want to have a conversation about normal stuff.” Jill:                   Come and have a cup of coffee with me. Joe:                 Sometimes, we talked about this before, that sometimes people are afraid to say the wrong thing or do the wrong thing. Jill:                   They don’t know how to talk to people with cancer. Joe:                 Yes, exactly. Jill:                   They don’t know what to say, so some people will back away.  You might lose friends that you had for a long time, not because you’ve been a bad person, it’s because they don’t know how to deal with it.  This comes to the next rung on Maslow’s Hierarchy of Needs, love and belonging, which is friendship, family, and sexual intimacy.  Now, when Sam was diagnosed with cancer, we had adult children.  We sat them all down and we discussed all of this.  They have been an amazing support. Sam didn’t feel alienated from the family, he felt supported.  My kids have helped me come to terms with the roller coaster of the emotions, because it is.  I know that I can speak to them and they’ll say, “What do you need?  Come and have a cup of coffee with me, mum.  Dad, how are you going?” We also spoke to our wider circle of friends.  Making them aware of what was going on, letting people know that, yes, you are afraid but you’re not going to be defined by it.  Sexual intimacy. A lot of people would sit and say, “I’ve got cancer, I cannot come close to you.” That’s not what it’s all about.  It’s about being in the moment with the person, enjoy that special hug, they’re still who they were before, it’s just that they’ve got a diagnosis of cancer.  Have that gratitude of who that person is.  They haven’t changed, willingly, they’re still your lifelong partner.  Time box what’s going on, is this going to continue forever?  Understanding that then you can deal with it, and provide updates for your family and friends, and help manage expectations, especially from a carer’s point of view, managing expectations of what did Sam think I was going to do to support him? It’s like, well, I can do this, this, and this, but I need help in these aspects of our life.  It’s calling out for that, and it’s having that gratitude of that support network that’s around you.  You’re not in this on your own. Joe:                 Exactly.  Being in the moment I think is a phrase that gets thrown around a lot these days.  I think it’s a really tangible and practical thing, it’s not thinking about something else when you’re talking to your partner, you’re actually listening then, you’re having a conversation and not thinking, what are we going to have for dinner?  If you’re with a friend, he’s talking to them about what’s going on in their life and not thinking about whatever it is that you have going on about the game you’re going to watch or something. Being in the moment really is about, I’m with this person right now, I’m not thinking about doing the groceries later, or watching a movie or what am I going to do tomorrow?  It’s really being in that moment right now, listening to where they are, saying where you’re at.  Really, that’s what being in the moment is for me.  Also, I know there is all this stuff about mindfulness, all this stuff about being mindful of where you are in the moment, one of the things that I’ve really discovered that was a surprise for me, really, mindfulness is about observing your own internal state. If, for example, you go through this roller coaster of emotions that we talked about, going through being anxious or feeling guilty or threatened.  What’s really helped me is to go, not to push it away and not to say, no, it’s not happening, but to say, do you know what?  I am scared.  Let me just feel how does it feel in my body.  I can feel that I’m figity, I’m not myself.  Letting that sink in, letting that feeling go through has really helped me settle it down, almost on a physiological level, you know? Jill:                   That’s exactly right.  A lot of people aren’t in tune with their emotions.  A lot of people try to supress their emotions, acknowledging that it is okay to say, “I’m scared.  I’m afraid.” Being in the moment with that person, doing that whole mindfulness aspect helps combat anxiety, because that mindfulness and being in the moment, it brings you back to the present, not what will happen in the future.  The future we’ve got no control over yet.  The present we have control over.  Being in the moment, mindfulness combats anxiety and it also helps you to pick up on things that you may have missed, if you’re worrying about doing the groceries later, it helps you look at the person that you’re with, to see how they’re going?  You share extra special moments by doing this, that you might have just skipped over.  It’s like, that’s what creates that strong bond. It doesn’t have to be with your partner or your loved one, it can be with your kids, it could be with your friends, it could be with your work colleagues.  Being in the moment, enjoy what they’re doing, participate.  Working through it together, which takes you up to the next level in Maslow’s Hierarchy of Needs, esteem.  This is around self-esteem, confidence, achievement, respect of others, and respect by others.  Mindfulness and being in the moment helps you with the confidence to know what you’re doing at that particular point in time. You might not know tomorrow, but you know what you’re doing right then, you’re getting that sense of achievement that you can do something right now.  Your partner or your carer is going to help you do that.  They’re validating that you’re a worthy person, so that your self-esteem will start to improve. Joe:                 One of the ways to do that, I’ve spent a bit of time looking at the work of Nathanial Branden, the world’s expert on self-esteem, one of his things is about doing sentence completion exercise.  Having what he calls a sentence stem, so something like if I get five percent better at being more present in the moment, then you finish up with whatever comes up next for your, you end up with some really surprising results.  If I spend five percent more time on doing the things I really care about, then… and you come up with all the answers you need to really feel like you’re more in control, that you deserve happiness, that you deserve the life you want to have. Jill:                   Exactly.  It’s empowering, isn’t it? Joe:                 Yes, absolutely. Jill:                   Having that sense of achievement that I deserve this, I can do this, it’s like you then show other people that you’re not going to be dictated to by the cancer.  They give you respect.  You’re taking control of your own life and your destiny.  Once they show you the respect, you’ve got immense respect for them as individuals.  It’s that mutual collaboration.  Definitely identify that if I do this, that this can happen.  Sam and I had to sit and go: If this happens, then we can do that.  It comes back to that risk management again and that mitigation, if this happens, then we can do this.  It’s having that control, the confidence that you will know that in the future, if something crazy does happen, you’ve got the plan there to deal with it. Joe:                 Exactly.  That, to me, Jill, is also about becoming an expert on your own illness.  If you understand exactly what’s going on, every step of the way, what are the possible options?  What would happen if this test comes back positive or negative?  What would happen then?  It gives you confidence in that you know what the next steps are, it gives you the capability to ask the right questions of your specialist.  It gives you a sense of being in control. Jill:                   That’s correct.  It’s like leverage the experience of others.  It’s very important to understand what cancer is, what cancer can do to you, physically and emotionally, what cancer can do to your support network.  Find out as much information as possible, because then that means you’re in control of it.  Leverage the information that you get from your specialist, your oncologist.  They’re the one to deal with this day in, day out.  This is the first time that you’re dealing with it.  Leverage their experience. It’s being prepared for the positive and the negative and then that helps you move forward.  It’s taking you to the top of Maslow’s Hierarchy of Needs, the top of the pyramid, your morality, your creativity, problem-solving, your lack of prejudice, acceptance of the facts.  If you can do those, you’ve achieve self-actualisation.  You know who you are, where you are, and what you can do about things.  Choosing your bigger purpose, don’t let cancer define who you are, you’re still an individual.  You’re still your authentic self.  You’ve got to make cancer a part of your life, but not be consumed by it.  It’s building your army of supporters around you and then you’ll have a renewed perspective of life.  Look at the little things. They are the things that make the difference, be in the moment.  Look for those positive experiences.  Learn and grow from the negative experiences but accept that they’re all part of this.  Know who you are and how you’re going to deal with things.  It’s very scary.  It really is, but once you come to terms with all of that, going through your diagnosis, your treatment, and your survivorship, you’re armed with what you’ll need as you go through that rollercoaster of emotions.  I’m not saying that it’s all going to be smooth sailing and it’s all going to be in the same positive direction.  Sometimes you’ll have setbacks, but knowing who you can call on, going through all those hierarchy of needs.  Where have you been taken to at that particular point in time?  What do you need to do to mitigate that risk? Joe:                 That’s fantastic, Jill.  Thank you so much. Jill:                   That’s okay, it’s been a pleasure, Joe.  

Cancer is crazy – every single day, you’re dealing with physical symptoms and side effects of treatment and your own emotional state while still trying maintain a sense of normality in your everyday life.  It’s so easy to overthink it and get swept up in the craziness of it all… That’s why I love talking to Khevin – he is a male breast cancer survivor who has a way of cutting through the noise of worries and stress and deal with cancer in a profound and honest way through humor and ingenuity, how to laugh despite cancer, at the world and at yourself. Here is what we cover: The numbness of cancer diagnosis Uncovering the myths about applying meditation and mindfulness Laughter yoga – oddly therapeutic! Using music for stress relief during cancer Kevin top 5 lessons learned in dealing with cancer How to laugh despite cancer and much, much more! Links Khevin Barnes | Cure Today MALE BREAST CANCER SURVIVOR Khevin Barnes; Male Breast Cancer Survivor, Cancer Writer, Inspirational Keynote Speaker Episode 018: Finding The Light Amidst The Darkness Full Transcript Joe:                 Khevin, the first thing I want to ask you is, how did you react when you first found out that you had cancer? Khevin:            Well, I was numb.  The reason for that is, the way I found out was a little different.  I was living in Hawaii at the time, with my wife.  I had retired from being a magician for many years.  We wanted to do something, something that was really different and something that we really wanted to do, which was to live in a zen centre and to study zen meditation.  We actually lived in Hawaii as residents in zen centre for a year, and my diagnosis happened there in Hawaii.  We went to see my primary care physician and I had a little bump on my breast and went to see a surgeon, who did a needle biopsy.  She was going to get the results to me in a few days. At that very same time, my mother who lived in the States, had fallen and broken her hip, he was 93 years old.  I jumped on a plane, they said she wasn’t going to live very much longer.  I flew to California to see mom, say goodbye to mom.  On Mother’s Day, which was on May 11th of 2014, I got a phone call from this physician, she left a message.  I’ll never forget the words.  She said, “Khevin, I have a little bit of bad news.” That’s how I got my diagnosis, over the phone, on Mother’s Day, when I had gone to literally say goodbye to my mom. She lived another couple of days, I flew back to Hawaii, but the thing that’s so unusual about this is that I was there for her, so my brothers and sisters were there, we were all saying goodbye.  When this happened, and I found out I had cancer, I didn’t even have time to even process it.  I just put it away.  On the plane ride back to Hawaii, it’s when it first hit.  That numbness that I had remained that way for a couple of days, until I was heading home, and then I started thinking about it.  That’s when all the typical fears and thoughts of the future, worries about the heck this cancer even is, that’s when it all set it. Joe:                 Yes, well, I guess it’s a real struggle to talk about cancer, as well, because when you’re going through it and asking for help and talking to your family, talking to your friends.  How did you go about that? Khevin:            Well, my family was very supportive, but remember, they were 2,500 miles away.  They were all back in the mainland.  Fortunately, I was living in about the best place you can be to have a cancer diagnosis, which was a zen community, and a zen Buddhist temple.  People there, of course, were totally supportive.  I guess that proves that no matter what kind of lifestyle you live, you can be vegetarian and sit in meditation all day long, walk on the beach, and still get cancer.  There’s no guarantees that where you are or what you do is going to keep that out of your life.  They were totally supportive.  I stayed there another four months before I came back to the mainland, then I had my surgery, my mastectomy there.  I couldn’t have asked for anything more. Joe:                 Yes, that’s fantastic, Khevin.  Tell me, how did the meditation help you to deal with the whole madness of cancer? Khevin:            It helped me a lot and it still helps me today.  It’s one of the best tools that I have.  Meditation is really just the simple practice of living in this moment right now.  It sounds tripe, it sounds over simplified.  It really is not a complicated thing.  It takes a lot of practice because our minds are in and out of the fear of cancer, the fear of recurrence, the issues we’ve had in the past with the pain of living with a life-threatening disease.  Meditation, I think is probably the single most beneficial thing that I have.  I try to do meditation every day and it’s been a wonderful help. Joe:                 You know, Khevin, for me, meditation has been always something that I’ve heard about and wanted to try, I guess if someone wanted to get into it, what would you recommend as a way to get in?  We hear a lot about meditation, but no one really knows how to do it? Khevin:            Well, the professionals, the guys who go back a thousand years will tell you they don’t know how to do it.  You’re not doing it.  That’s true.  I’ll play the Hollywood version.  Nobody becomes enlightened, we’re not heading somewhere that’s going to give us peace in our lives, or change our lives in some significant way, we’re not trying to get that.  Meditation is a lot easier than that.  Zen mediation should be effortless and eventually, it is.  It’s sitting quietly, watching your busy thoughts, we all have them, all day long. I have them right now as I’m speaking to you, wondering what your next question will be.  Understanding that, that’s how the brain works, that’s part of it.  When we can focus on this moment right now, which is you and me talking, and forget everything else, we are in perfect Zen meditation.  That’s really all there is to it.  The Hollywood version makes it much more complicated.  We are all enlightened beings, it’s a matter of sitting with that and allowing that to take place inside of us. Joe:                 That’s a pretty cool rundown, Khevin.  Another form of dealing with stress and with cancer, I guess is music.  I know that for me, Khevin, music has always been so much more than self-expression.  I know it might sound weird, but for me, music has always been a form of self-therapy.  I know that you’re into music, as well, so has your song-writing, has it helped you to deal with cancer and the madness of it all? Khevin:            Absolutely.  Next to meditation, music is the number one thing in my life, but it always has been.  Meditation is something I got into, probably 15 years ago when I got married to my wife, who had been meditating for 4 years.  Music heals.  That’s all I can say about it.  Music heals.  I’ve been writing music for many years.  As I was sitting recuperating in that Zen centre with all of the tubes coming out of my left breast, I wrote a song called: What good is a breast?  It made me laugh, it was a funny, silly tune.  Really, asking the question: What good is a breast? That’s what got me through those first couple of weeks.  Long before I started to write a musical about it, which I’ll tell you a bit about later.  It was that song, what good is a breast.  I had that going on in my head the whole time.  I’ve written probably 150 tunes and I look back at my whole life and I have these songs, and they tell me everything that I had gone through.  I think the music is key.  You don’t have to be a writer but listening to it and using it is a wonderful healing tool.  It’s so important. Joe:                 Do you think that music is something that anyone can get into?  Anyone who wants to express themselves, but maybe they’ve always been afraid to try?  Maybe they’re worried about not really having the musical talent or not having a great voice, is that something that anyone can do, do you think? Khevin:            Sure.  I’ve been doing it for over 50 years.  I still worry about whether or not I have a good enough voice to do it.  That’s typical for us, I can’t speak for all of us, but I never feel totally like I’m professional at anything.  There’s always some learning I can do and improvement.  Yes, anybody can do it, whether you’re writing it, playing an instrument, listening to it.  I don’t know anybody who doesn’t enjoy hearing music.  I’m sure there are some folks out there, but it’s so key.  It’s such a fantastic element that we can add to our lives.  I can’t imagine living without music. Joe:                 I completely agree with you, Khevin.  I think I also think that continuous improvement is a path to mastery.  You can never be settled and just being in one place. Khevin:            Well said, yes, absolutely.  Yes, I love writing lyrics and tunes and I was writing a musical, but I’ll tell you about that. Joe:                 Yes, let’s talk about that.  You have an entire musical about male breast cancer.  How did that come about? Khevin:            Well, it started with that song: What good is a breast.  I had written another musical prior to this, about maybe eight years ago when we were still living in California.  I wrote a musical that I wanted seniors to do with it.  We were very involved with teaching senior’s laughter yoga.  Going into senior centres and laughing with people, basically.  Laughter is another tool for helping people.  I wanted to write a play that they could relate to, to actually get up and actually do.  It took a year to write it, had twelve songs in it, and so I had one under my belt that I had done. The idea of writing another one was a little bit daunting because it takes a lot of time.  I’ve been working on this one for 15 months now.  My deadline for finishing is the end of this month, June.  I’m almost there.  It’s a lot.  It really gets your focused on the issue that you’re working with.  In my case, male breast cancer.  There are so many elements.  It’s a comedy, believe it or not, and people say to me, how can you laugh at cancer?  I told them, I’m not laughing at cancer, I’m laughing in spite of it.  That’s the whole point. Male breast cancer, anyway you look at it is a laughy thing.  It doesn’t make any sense, because most people don’t know they even have it.  It’s the silliest thing I’ve ever heard of, because of that, I’m able to laugh along those lines and write a show that I hope will engage people and let them know that male breast cancer actually hits.  A lot of folks still don’t realize that. Joe:                 Yes, that’s fantastic, Khevin.  We all know that laughter is the best medicine.  Like we said, it can be really a great tool for dealing with cancer and all the stress.  I know how you have some unique strategies on when it comes to putting laughter into practice, can you talk about that? Khevin:            Sure.  My wife got me into laughter yoga about 12 years ago.  Laughter yoga was invented, if that’s the correct word, it was conceived of by a gentleman who lives in India.  His name is Dr.  Kataria, he was a medical doctor.  He got the idea about 20 years ago, to use laughter for healing people.  He gathered people and in park in Mumbai, India, and they told jokes.  After three of four days, they realised they ran out of jokes, and they came up with this concept of laughing for no reason. That’s what laughing is about, laughing yoga.  We get on the phone, we do workshops, we laugh with people, but for no reason, because laughter in a group situation always brings more laughter.  You start laughing because you’re laughing.  It’s a very simple thing, it’s like meditation in that sense, you can’t overthink it.  Again, it’s a wonderful tool.  You’re breathing properly, if you’re laughing, you’re breathing down deep where you need that oxygen.  You’re lowering cortisol, which is the stress hormone.  You’re increasing endorphins.  This is all supported by scientific evidence in the last ten years.  Anyway you look at it, laughing is a good thing, if you can do it with a group, right on, you’ve got it made. Joe:                 That’s great, so teach me.  I think it sounds so great, like laughing for no reason at all, but someone has to start, right?  Someone has to get it going. Khevin:            Just talking to you, I’m laughing.  Okay, I’ll teach you a little laughter exercise.  Can you see me? Joe:                 Yes. Khevin:            For those of us who are listening to the audio right now, I’m holding two pretend glasses in my hand.  Can you do this with me?  Joe, you’ve got to hold up your glasses.  You’re pouring laughter from one glass to the other saying, ha, ha, ha, ha, ha. Joe:                 Ha, ha, ha, ha, ha. Khevin:            Okay, the other glass, ha, ha, ha, ha, ha.  We’re shaking them up like a cocktail and now we’re drinking it.  Ha, ha, ha, ha, ha. Joe:                 Wow, that is a great tool, yes.  Wow, yes. Khevin:            When we combine simple exercises, like the one we just did, and there are hundreds of them that we can do, it helps a lot.  It helps to stimulate that laughter.  Mostly because it’s silly, pouring an imaginary glass of laughter. Joe:                 Yes, Khevin, also I think it’s very symbolic, right?  Like you’ve got a glass half full, half empty. Khevin:            There we are, I’ve never thought about that.  Way to go.  There are hundreds of exercises that people have come up with, we use a lot of them, through all of these simple things. Joe:                 That’s fantastic.  I know that you’re a big believer in mindfulness, as well.  What does it mean for you and how can someone apply it in their daily life? Khevin:            Well, mindfulness, of course, is related to meditation.  In my case, Zen meditation.  It really is a very simple thing.  Mindfulness is a psychological process, really, of bringing a person’s attention back to what’s happening right now.  Mindfulness and meditation is a tool for achieving mindfulness or at least experiencing it.  Basically, if you are able to forget about that MRI you have tomorrow, or at least set it aside, because the fear that goes with it can be terrifying, at least in my case.  I don’t like them. To get back to the moment at hand, the moment at hand right now is talking to Joe, or the moment at hand is petting my cat who is sitting right over here in the corner.  Really, it’s as simple as that.  Mindfulness is simply being mindful for where you are in the moment.  It takes practice.  People who have worked at this for years will tell you, it’s still working.  It’s a daily practice you.  You need to do it more to be able to do it. Joe:                 Cool.  Look, Khevin, I know that you speak to many folks about how they deal with cancer, you obviously think about it a lot.  You write a lot about your cancer experience.  You express it in so many different ways, so what are the top, let’s say, three things that you learned about dealing with cancer, dealing with the fear, dealing with the stress, what are the top three things that you have learned that everyone should know about? Khevin:            Well, how about I give you the five things real fast? Joe:                 Perfect, even better. Khevin:            The first one is laugh often, laugh deeply, laugh with friends, laugh at yourself, and by all means, laugh at your cancer.  This may seem foreign to you for a moment, but let that sink in.  Again, you’re not laughing at your disease, you’re laughing when you realise how crazy it is that it even exists.  There are 14 million people a year diagnosed with cancer around the world.  Here in the United States, we’re expecting about 1.7 million new cancer people to be present in this coming year, 2018.  It’s huge, it’s around the world.  It’s difficult to assimilate.  It’s difficult to understand.  Number two, I would say get involved. As a cancer survivor, the best thing I’ve ever done is like writing music, it’s writing for cure magazine and some other ones.  I write whatever I feel.  I love to be able to do that.  It’s nice to be able to express.  Write in a journal.  Write a letter to another cancer survivor.  Get involved in some way and you’ll find that it takes your stress away from your own situation.  Number three, I’d say believe in being well.  Our bodies respond to how we believe, what our beliefs are, what we’re thinking, how we’re feeling.  I believe that I’m a well person right now.  I may have cancer in my body, but I’m symptom free.  At the moment, symptom free is all I need.  Believe in being well. Number four would be exercise.  I’ve been a runner my whole life, I can’t run now but I just had two new knees put in, so I’m walking pretty well.  Whether it’s walk, and if you can’t do that, sit in a chair and move your arms, get some movement in your body and in your life.  I would say number five, add some music.  Again, I can’t overstress how incredible music is, music feels.  Do it any way you can.  Listen to it, sing it, jot it, add music into your world. Joe:                 Love it.  Khevin, that is fantastic.  You mentioned get involved, I think that’s such fantastic advice.  What are some of the great ways to get involved in something that’s bigger than yourself? Khevin:            That’s a good question.  It is bigger than yourself and the very fact that it is, is what makes it work so well, I think.  All of the cancer periodicals, magazines, blogs, they want to hear your story.  Don’t even try to be a writer, just try to tell your story.  That’s what people like to read.  That’s one way to do it.  Again, help somebody down the street that you know has cancer.  I love meeting new folks because I remember how terrifying it is, really, for the first weeks and months.  Some people don’t have the wonderful support that I had.  You can reach out and help folks.  Go to a support group.  Again, if you know somebody, ask them, what do you need?  What can I do for you?  What can I tell you from my experience?  There are many ways to get involved and those are a couple of them, that I think will help.  You’ve got to be aware that there are folks around you that are experiencing the same thing you are, 14 million a year.  It’s an amazing number, it’s overwhelming.  They are looking for help.  Give a hand out. Joe:                 So true, Khevin.  I was reading about how cancer stole your life, but it also gave you a new one, could you talk about that? Khevin:            Yes, that was a piece I wrote for Cure a while back.  When I wrote it, I was talking about, I’ve had the good fortune is the right word, to experience cancer from both sides.  What I mean by that is, I was a caregiver.  My first wife died at the age of 47 from ovarian cancer.  She died much too young.  The last three of four years were very difficult.  I was her caregiver, she was on a food tube for six months.  I had to feed her that way.  She had all kinds of procedures, experimental therapies, flew around the United States to get help from different agencies that wanted to give her a hand.  Ultimately, it killed her, but she never lost her spirit or her fight. In fact, being my magical assistant, we still had a couple of tours that we did.  We went to Japan and did a tour when she lost her hair three times.  The only way that she could go was her oncologist allowed us to take her chemotherapy with us to use it halfway through the tour, so we found a doctor along the way to give it to her.  Her drive to keep living was incredible.  That was the life I had to leave behind.  For a long time, a couple of years, really, I wasn’t quite sure how life would ever come back.  You’ll hear this from a lot of survivors who have lost a spouse and a friend or a brother or sister, it’s very difficult to imagine living without that person.  What I had to do was, I had to realise that was a life here and I had a chance for a totally different second life. In a way, cancer left that life behind but allowed me to live this brand-new life.  As I see it that way, it’s not that I’m forgetting any of the past or pretending it didn’t happen, but this new life is exciting, it’s another chance to live, and I’m very grateful for that.  That’s really what I was talking about when I said that cancer stole my life and gave me a new one. Joe:                 Yes, that you for sharing that story, because it’s really moving.  Khevin, if you had a minute with someone who just got diagnosed with cancer, what would you tell them? Khevin:            I had advice from a fellow who was a paraplegic.  I was feeling very distressed, a lot of pain, I was living in a small place in Oregon after my wife died.  I said to him, how do you deal with this pain?  He couldn’t move his arm to his leg, and he’d lived like this for a number of years.  He said to me, and I’ll never forget his words, “Khevin, immerse yourself in your pain.” In other words, face it head on, which is really what meditation or what mindfulness is talking about.  Get in the moment that’s passing right now, it might be painful but that’s reality.  That’s the advice I’d anybody.  Immerse yourself in the situation and it’s not always easy, but it’s real and it will get you through. Joe:                 Yes, that’s such a unique take on it, Khevin.  I’ve never really heard that perspective.  I think that’s really powerful.  Khevin, so if someone wanted to find more about your journey and the projects that you’re working on, what would they do? Khevin:            Well, I can certainly share things about my play that’s coming up.  I have a website: malebreastcancersurvivor.com.  That would be a good way.  They can always reach me through any of the pieces that I write.  I think I’ve got something like 150 of them out there now, which really just tells you how much I need to express, as I go through this expedition, as opposed to a journey, but as I go through this cancer expedition.  It’s a wonderful way for me to share with people.  They can always respond to an article and ask questions and maybe give me an idea, something I can write about.  We can talk that way, as well.  I’m always open, via email or phone or hello as you pass on the side of the road.  Let me know, I’m there for you. Joe:                 That’s fantastic, Khevin.  Thank you so much.  You’re a true inspiration. Khevin:            Thanks a lot.  I’ve enjoyed so much to talk with you.  I’m going to be your best follower now, because I know you’re doing a lot of these chats.  I’ll be listening to see what you cover. Joe:                 Fantastic.  Thank you, Khevin. Khevin:            Alright, my pleasure.  We’ll talk again.  Bye. Joe:                 Thank you.    

Today, I’m talking to Justin who found that when document your cancer journey, it helps you and gives you a higher purpose in helping so many others by promoting cancer awareness. Sharing your story is a fantastic way to transform these tough times when you’re dealing with cancer, to share your experience in such a powerful, so you can really refocus and re-centre your life around something positive.  Here is what we cover: Dealing with cancer diagnosis Mental health during cancer Documenting your cancer journey and much, much more! Links A Ballsy Sense of Tumor Justin Birckbichler | Cure Today Episode 003: Building Knowledge Beats Cancer Anxiety Full Transcript Joe:                    Justin, I want to start with your life before cancer. What was that like? Justin:              That was a really good year, 2016, prior to getting diagnosed.  I had applied and been accepted to the Google Innovator Academy, so I got to fly out to the Google headquarters in California for a couple of days, I got engaged, we bought a house in a different area of Virginia, I quit my job and found one that was more aligned to my educational beliefs, we got a puppy.  Everything was great, I was very active, you know, I wasn’t as in shape as I would have liked to, but I had some physical fitness ability.  It was a good year, really, up until I got diagnosed.  Joe:                 Right, it’s pretty crazy.  What was going through your mind when you first found out you had cancer? Justin:              I discovered a lump in the shower when I was just doing my monthly self-exam.  I feel a hard lump, I haven’t felt this before, so I was a little baffled.  Like I said, we had just moved to a different area of Virginia, so I didn’t even have a doctor at the time.  I had to locate a doctor.  Then, basically, the first time meeting this doctor, I asked her to grab my balls.  I don’t normally even kiss on the first dates, so that was jumping through a couple of steps right there.  I just kept wanting answers.  From that doctor, they bumped me to an ultrasound and then to a urologist.  I just wanted answers.  When they finally told me I had cancer, it’s going to sound weird, but it was almost a relief because I had answers.  Then it all hit me, “I’m 25 and I have cancer.  What do I do next?” Joe:                 Yes, well that’s a big shock.  You said it was almost a relief.  How did you know what was going on? Justin:              I basically just asked my urologist, what’s the next steps?  My urologist was incredibly throughout the whole thing, he was like, “You’re going to need surgery, and quickly.” I never really had time to react or really question.  I just had to launch into the action steps of things.  Basically, I just asked the questions, what’s the next step?  That’s how I figured out what was going on. Joe:                 Yes, I know your way with cancer.  I went into the zone, where I knew people around me were saying something, I knew the words, but I really couldn’t take it all in.  It was just so hard to deal with it. Justin:              Yes, absolutely.  It was hard to try to figure out what I was doing and then how to tell people the other same information.  Eventually, it was like, when there’s stuff to tell you, I will tell you. Joe:                 Yes, exactly.  Justin, do you feel as a man you’re expected to react to cancer in a certain way? Justin:              Yes, that’s a lot of what I do now on the survivorship of things, is have a steady resolve, like, I’m going to get through this.  It was hard to be emotional about it, my grandfather had cancer, he passed away from it a couple of years ago.  He never really talked about his battle with cancer.  You always see in the media, female celebrities talking about their different forms of cancer and so on and so forth, but you don’t necessarily see a lot of people talking, unless they’re older men, talking about prostate cancer or something, to that effect.  I felt at first it was something like, I’m just going to go through this and keep it to myself, but then that obviously changed, as we’re here talking about cancer. Joe:                 Exactly.  On the practical side of things, you have a lot of stuff to juggle when you have cancer.  You have work, you have people you care about, then you’re running around for tests.  Then you go for treatment.  This everyday reality for cancer, how did it work out for you? Justin:              With testicular cancer, it’s highly curable but it’s very aggressive, so you have to move very quickly.  At my job as an elementary school teacher, I basically told my principle, listen, I’m expecting I have some sort of lump, he’s like, “You go and get this taken care of.” I literally got my ultrasound during my planning period, during school.  I’d left for 45 minutes, they wanted my balls, and then I went back to school.  I wish I would have had a shower in between those because that was not fun teaching for the rest of the day.  Then when I did get diagnosed, and said I needed surgery, that was great. I never had to worry about that.  My fiancé, wife now, she was great.  We were just talking about updating people.  I just had a really good support team.  I was very fortunate that as I was gearing up to go to chemo and I needed my port place and I needed to get some other random bloodwork done, my principle would say, “Hey, you can come in an hour late or leave and hour early or whatever”, to try to conserve a lot of my sick leave.  Then, eventually, when I did go into the active treatments, at a stage, I was on medical leave for three months.  I didn’t have to worry about work at that point. Joe:                 Yes, that’s fantastic when you’ve got work that’s supporting you so much through it.  I guess cancer can be pretty hard to take emotionally and mentally.  It certainly was for me.  Nothing is for certain anyway, everything is up in the air, you make all of these plans and you don’t really know how these things will turn out.  How did it affect you? Justin:              I’ve been notorious for keeping my emotions in for all of my life and probably even including now, I’m getting a little better.  Not as much as it should be at 26.  It was definitely affecting me.  What I did to try to relieve that and not bottle it up, because I had already felt myself starting to get a little angsty or what have you, I started writing down what was happening.  It was more of a record, just for myself and then also as a way to get that out. It was definitely affecting me, because to be perfectly honest, from surgery to starting chemo was exactly one month, so I really didn’t have a lot of time to let anything affect me at the time.  A lot of the emotional came afterwards, after active treatment.  That was kind of a blessing that everything moved so quickly.  Writing is really how I got through a lot of the emotional stuff throughout. Joe:                 When you say writing, did you have a diary? Justin:              It was just a Google Doc that I wrote everything from the day I found the lump, up until present day.  I still continue to write, but now it’s more of a public form. Joe:                 What did you do with that diary?  Is it still there or did you put it all up on your blog? Justin:              It’s all up in my blog now.  It wasn’t even called a Ballsy Sense of Tumour at first, it was just called the Cancer Chronicles, which then I adapted it into Chemo Chronicles for part of my series.  Yes, there are a couple of different labels on my blog, but the first about 15 or so posts were the original journal, if you will, of the Cancer Chronicles.  Then I eventually stopped writing on that and then I still write drafts in Google and then I publish them on the web. Joe:                 I think that’s such a fantastic advice, Justin, that you found a way to deal with your emotions through writing.  It’s something that isn’t really obvious to most people.  I think I read that in one of your articles, as well.  In terms of your emotions, as well, you mentioned that it hit you a little bit later down the line.  How did that work out? Justin:              I finished my active treatment in January of 2017.  Then they said I was in remission of March.  Things were trucking along just fine.  Then around sometime in the summer, I noticed that I was just feeling down a lot and angry, and for no apparent reason.  For all intents and purposes, I didn’t have cancer anymore, I should be happy, but I wasn’t.  Then it finally took me until September, just a couple of months ago to really admit, hey, something’s definitely well off here. I talked to my oncologist and I was like, I had suffered through depression in high school.  I was already familiar with what that feels like and what to look for.  I’m feeling a lot of the same things, I need help.  He prescribed me some antidepressants.  After tweaking the dosage for a while, that’s been hugely helpful.  That was the big thing I noticed is, I forget what the one quote I said once, it’s like, treating cancer was hard physically, surviving cancer is hard emotionally. That’s what I noticed, the survivorship stage while it’s physically easy and I’ve gotten back into shape and my hair’s regrown and all the side-effects associated with chemo, they’re all gone, but the mental scars are still there.  I’m not just writing about testicular health and men talking about their balls, that’s the other thing I really advocate for is mental health. Joe:                 Absolutely.  Why do you think that happens?  Why do you think that, like you described, you had chemo, the cancer is gone, everything is supposed to turn out well, yet, you still felt this downward slide emotionally?  Why does it happen? Justin:              In my opinion, I’m not a doctor, but what I think it is, is everything moves so quickly.  Like I said, it was a month from surgery to chemo, and then it was three months straight of chemo.  Then it was three months straight of chemo and then I was suddenly thrust back into the real world.  I never took the time to process.  All of sudden, a rubber band can only stretch so far before it’s going to snap.  I think it just all came to a head and I think not necessarily – I still had my writing and everything, but really, I had writing, I had exercise, but there is something that just changes within you.  You shouldn’t be afraid to ask for help.  That’s just what I noticed. Joe:                 Absolutely.  Speaking of asking for help, how did your family, your friends, how did they react?  Did they support you in the way that you wanted to be supported? Justin:              In all but one case, and I’ll get into that one case a little bit more, everybody was supper supportive.  I could not have said anything.  My mom, who lives in Pennsylvania, which is a couple of hours away from where I live, as soon as I said I was going to need surgery, she was like, “I’ll drop everything to come take care of you.” Then she took extended leave from work to come take care of me while I was going through chemo, so my wife could go work, so we still had some sort of income coming in.  Everybody was super supportive; my friends were all more than great. I did have one friend who when I had to pull back some of my projects that I had been working on prior to cancer, had pulled back because I had to focus on my health, then I decided to start all of my awareness efforts.  She took that as a personal attack, that I didn’t want to work with her, whereas, I had a change in what I saw as important.  Her direct quote, one night she said she felt that I was pulling back from our friendship.  She said, “I thought our friendship was stronger than you getting cancer.” Joe:                 Wow. Justin:              I stopped talking to her at that point.  I emailed her a month or two later and I was like, “That wasn’t okay to say.” We’re not friends now to this day, but it was just interesting that random people on the internet that I’ve never met were more supportive than someone who had claimed to be my best friend. Joe:                 Yes, wow, that’s rough, man.  The other thing I want to ask you is, we talked about how you now speak so much about men’s health and the mental health.  I’m sure you spend a lot of time thinking about all of this stuff and trying to digest it all.  Justin, what do you think that is different about men facing cancer?  Do we look at things in a different way?  Do we process things differently? Justin:              I know with me and the men who I’m close to in my life, we’re very solution-oriented.  We want to know, here’s the problem, here’s how we fix it, we fix it, what’s the next step.  Or what’s the next problem, more accurately half the time.  Which is a pragmatic approach, it’s great sometimes, but it’s also terrible sometimes, because you do need to take care of the emotional side along with the physical side.  I think on top of that, men just don’t talk about their health as much as they should. I’m running a research study right now on men and going to the doctor and testicular exams.  Most guys who I’ve asked about are great and they say that they’re more than happy to participate in this study, in this survey.  They ask me questions when I ask them: Does the doctor talk to you about how to do a self-exam?  They’re like, no, but I want to know how.  Then I’ll interview a group of guys, then one out of nowhere will be like, no, I don’t want to participate. I’ll be like, okay, it’s like as a teacher, I should say, don’t use peer pressure, but I’m totally trying to get this guy peer pressured into this to talking about it.  It’s just kind of insanity to me, how you would rather not have embarrassment, just to avoid talking about something that is very, for all intents and purposes, maybe it’s a little embarrassing, but it could save your life. Joe:                 Yes, absolutely.  What about your partner, how did she take it all? Justin:              She took it very well.  She was a great caregiver, like I said, my mom and get were a caregiving team.  One of them would take care of the house and the pets and all the assorted things and the other one would take care of me.  She did a very good job.  She really put on a strong front throughout the whole process. Joe:                 Yes, that’s fantastic.  Do you think that she’s had the support that she wanted from the people around her? Justin:              I think so.  She’d have friends who would check in on her, to check in on me, but also to check in on her and her work was very good about it.  If she needed to leave a little bit early to take care of me.  I think a lot of times with cancer treatment, it’s so focused on the patient, but I do think that her support system did a very good job of focusing on her as well. Joe:                 That’s great.  Justin, I went to deposit some sperm away for safe-keeping before starting my chemo.  That was a really bizarre experience.  You felt like no one thought this thing through from the perspective of the person who was actually going through it.  There was no sound isolation, I could hear these two people talking in the corridor.  There was a few DVDs in there, it was just awful.  It was the worst attempt at porn I have ever seen.  There was nothing to be inspired by, I was lucky I came prepared. Justin:              I know exactly what you’re talking about. Joe:                 How did that go for you? Justin:              I had to do my deposit, if you will, about seven days after surgery.  That was not fun.  Like you said, there was this gross couch lounge chair in there.  I was like, I’m not sitting on that because I don’t even know.  Yes, it was not a pleasant experience.  I’m glad I only had to do one deposit because I do not think I would have gone back for another, had they been like, “Something’s wrong here.” Joe:                 Justin, that story is worth at least one blog post. Justin:              Yes, I wrote a little bit about that, that would be something to revisit another time because when I wrote that blog post, I was like, no, I’m not going to get into this too much. Joe:                 It’s a painful memory.  Justin, I was reading about the time that your hair started falling out during chemo.  That actually triggered the memory for me when I was doing chemo, where it all started was actually my pubic hair.  My pubic hair, of all places, that was like a slap on the face, you know? Justin:              Yes, it’s interesting because they’ve shaved my pubic hair area for the surgery.  I just thought it had not grown back.  Then I was like, there’s nothing there anymore.  It actually started falling out in my armpits first and then my beard and then my hair.  I never had to worry about it falling out from my pubic hair because there was nothing there. Joe:                 Yes, it’s interesting.  I never really thought about that.  I did, for my procedure, they didn’t shave it.  I guess different places do it differently.  Could you please talk about your blog, how did it all start and why is it important to you? Justin:              Yes, what I was talking about earlier, initially it wasn’t going to be a blog, it was just a Google Doc that I was writing my story.  I shared it to a friend who is now my editor and chief of the blog.  She was like, “This is pretty good.  You should make it more than just a private Google Doc that you’re sharing with me.” The biggest thing that we talked about at first was, okay, cool, but what do we call it?  It was called the Cancer Chronicles, that was just the title of the Google Doc, but that wasn’t specific enough for me.  It needed to fit two things, it needed to show that it was going to be about testicular cancer, and it needed to show that it wasn’t going to be a woe is me-type blog. That’s how I came up with a Ballsy Sense of Tumour.  It’s a nice play on words, it shows that it’s humorous, it’s about balls.  It’s awesome.  When I Was writing up some of the initial posts to make them more public.  I was like, I want to make this more than just: Here’s what happened to Justin, here’s how he supported.  I started looking up different facts and figures.  I found that just men systematically don’t talk about their health at all.  That’s why it then became very important to me to get the word out there.  If I can talk about my health, maybe that will inspire another guy to do a self-exam or talk about his health. That’s what keeps me going, is knowing I could – sometimes, especially with different social media algorithms changing what they promote and so on and so forth, it gets frustrating.  Then I hear the research study I’ve been writing.  That’s been hugely inspiring just to see the conversations.  Literally, while I was at the gym today, I interviewed three different guys.  All three of them, I taught them how to do a self-exam.  I mean, I didn’t drop my pants in the middle of the gym to show them how to do that, they’d already asked me to stop doing that.  For all intents and purposes, a public place, teaching guys how to fondle their balls in a healthy environment. Joe:                 I like the way you put it. Justin:              Absolutely. Joe:                 Yes, absolutely, Justin.  That’s great that you’ve been able to take all of that experience that happened to you and put it into something that’s really positive.  What sort of feedback have you had so far? Justin:              Really, it’s been overwhelmingly position.  I always take screenshots when I get a cool text, or an email related to something, either somebody saying, “I read your blog and I forwarded it onto my brother and he did a self-exam and he discovered that there was a lump there.  Thank goodness I know you.” Or, I’ve really had very little pushback.  Even when I’m going up to people and saying, “Hey, I’m testicular cancer survivor, I want to ask you a couple of questions.” I’ve only had ten people out of the – I’m at about 400 responses – about ten people say straight up say no, that’s shown that with those ten people, we have work to do, but it shows with the other 300 odd people, they’re willing and open to it.  I’ve had overwhelmingly position responses from it.  I’m glad to see.  I could get punched in the face.  Be like, hey, I want to talk about your balls.  That could definitely not be taken well.  People totally take it well. Joe:                 Yes, that’s fantastic.  I think it’s such a huge impact area, that all it takes really is one person, for example, found a better way of dealing with it or discovered that they had cancer and got it diagnosed early.  All it takes is one case to make it worth your time, right? Justin:              Exactly, I figured, the statistic is like one in every two-hundred and fifty guys are going to develop testicular cancer at some point in their life.  I’ve talked, between my blog and social media and in-person, I’ve talked to thousands of people.  Divide that out, how many people have detected it earlier just because of me writing about balls incessantly. Joe:                 Yes, absolutely, Justin.  I noticed one thing that comes up for me is fear of cancer coming back.  How do you deal with it and what do you recommend to someone who’s in the same boat? Justin:              I deal with that very frequently.  It’s more notably when I’m on six-month scans and the couple of days leading up to the scan and a couple of days between the scan and the appointment is really rough.  Then, literally, once the doctor tells me, “You’re still in remission.” I’m like, okay cool, what’s the next step?  When’s my next scan?  The way I deal with it is, there are two things really, I schedule my scan and my appointment as close as humanly possible, so I don’t have to wait a long time.  They wanted me to wait a month and I was like, no, I’m not doing that.  You either reschedule me or you have that doctor call me and tell me, either remission or not.  That could be a less fun board game that you could play. Joe:                 I like that. Justin:              It’s trademarked now.  What I also do is I write, because if I know the last scan I had about, or I wrote one post about a scanxiety and how big that gets around the scan.  Rather than just thinking about it and spiralling myself, I write it down.  By writing it down, that’s the advice I’d give to you, or to other people in the same boat.  Recognize that you are going to be anxious.  Fear of cancer coming back is something that’s normal, every cancer survivor is going to experience to varying degrees and varying frequencies.  Recognise it, get it out, and try to move on.  Whether it’s getting out, verbally speaking it, writing it down, drawing a picture, whatever it is to get it out.  Don’t try to bury it, just recognise, face it head on, be like hey, the cancer came back.  It’s not going to happen, or if it does, I already beat it once, the second time is the charm or the third time, or however many occurrences.  Just deal with it in a position mindset as much as possible. Joe:                 Absolutely, Justin.  I know that for me, cancer gave me a completely different outlook on life, my goals and the things that I do every single day.  Did you go through a similar experience? Justin:              Absolutely.  My day-to-day, I would teach at school from eight to four, or stay an hour and grade papers and stuff and come home and work on lesson plans or whatever.  Go to sleep, start the whole process again.  I had no work/life balance whatsoever.  Now, I teach until four and I’m at the gym at 4:05.  It totally made me take better care of my health because I had let myself go, I was 215 after chemo.  Which for someone who’s six feet tall isn’t super heavy, but that’s still a little heavier than you should be.  My long-term goals are about men’s health now. While I’m still very passionate about education, but there are literally hundreds of thousands, if not millions of educational influencers and bloggers and social media fault leaders or whatever out there, but how many testicular cancer people and activists are there out there?  I feel like my voice and my time can be better given to that.  That’s my long-term goal, is living in a world where every man can talk about balls in a job interview.  Probably not actually the best thing to do but give it a whirl.  Find a job you don’t really want and go for it. Joe:                 Yes, that’s great, Justin.  If you have a friend who got diagnosed with cancer, what would you tell him or her? Justin:              I would say make it about more than yourself.  Use your experience to educate others.  It’s 2018, we don’t need to keep it in.  Cancer survival rates are going up, but you can use your story to inspire other people to promote early detection and more awareness.  That’s really how we’re going to end up beating cancer.  Whether or not we’ll completely eradicate it with a catch-all cure, I’m not sure, I’m not a doctor, but I think we can definitely work on early detection for the time being. Joe:                 Yes, that’s fantastic, Justin, I couldn’t agree with you more.  You have to make it about something that’s bigger than yourself.  I think that’s definitely what helped me.  Definitely something that sounds like what helped you, as well. Justin:              Absolutely. Joe:                 Thanks for your time, Justin.  I really appreciate it. Justin:              Alright.  Thanks for having me.  

One of the worst side-effects of cancer is that it takes away control and it changes the way you see yourself and the world around you.  It’s easy to lose sight of who you really are, and you need to find your way back.  That’s what I love about Sophie’s book “The Cancer Whisperer” – it’s all the ways that you can take your power back without being a hero. Sophie shares some fantastic advice and insight that can really help you: Dealing with fear that comes with cancer On being blindsided by cancer diagnosis Keeping your personhood intact Dealing with conflicting emotions Coming to terms with cancer Finding the light amidst the darkness of the dis-ease Dealing with moments when life shocks you with an event that you weren’t expecting Unique perspective on grief and much, much more! Links Sophie Sabbage Website Book Review: The Cancer Whisperer More To Life Episode 005: Become Your Own Case Manager Full Transcript Joe:                 Sophie, there’s a metaphor in your book where you refer to cancer as this place on the map where the map runs out.  That’s exactly how it feels, like this is the unchartered land.  Sophie, what is the first thing you should do to re-orientate yourself in this new world? Sophie:            I think it’s a place on the map where the map runs out.  I think it runs out for other people in other ways.  We find ourselves in these situations that we have no guidance for, no plan for.  A cancer diagnosis is blindsiding.  It blindsided me.  It really blindsided me.  I didn’t really have many symptoms.  I think the very first thing we need to do is deal with our fear, because we’re in shock and fear and often in denial at the beginning. That can take over and start to run the show.  I remember when I was diagnosed, I was given lots of leaflets in the British NHS about what to expect from chemotherapy and what to expect from radiotherapy and how to apply for disabled parking, but no one handed me a leaflet with how to deal with my terror, and my grief, and my rage.  No one even asked me the question.  No one in Britain, in our lovely oncology wards, our stiff upper lips, was even talking to each other about how scared.  No one was reaching out to say, “Are you as freaked out as me?” For me, I needed to really confront, challenge, work through my fear before I could do anything that felt remotely powerful in response to my disease. That’s really why I wrote the book, the help people do that.  I have a background in psychology and I have a toolkit for dealing with fear and rage and all of those things.  I found it tough.  I thought if I found it tough, I wonder who else is finding this tough.  Here I am, that’s what I spend a lot of my time doing now, is helping cancer patients work through their fear. Joe:                 Yes, that’s fantastic, Sophie.  What is the first thing you would suggest to do about fear?  What is the first step in the process? Sophie:            I think the first step is to name it, and not go all positive.  I meet many cancer patients who instantly get into: I have to be positive and I’m going to be okay, and it’s all going to be fine and I’m going to fight this thing.  I’m going to do the battle.  I don’t think that thinking helps us at all, I think we need to take some breath into our precious bodies and say: I’m scared.  I’m just scared.  Most fear, interestingly, is caused by what’s going on in our heads.  A cancer diagnosis is frightening enough, because clearly it’s a frightening thing to happen.  Then we start telling ourselves things like: I’m a goner. Or, it’s over for me, I’ve wasted my life.  It’s unfair, I’m failing my family, it’s my fault.  It’s the world’s fault.  I’m powerless, it’s hopeless.  I have to do what the doctor’s say.  We just get into this, I call it: Mind talk.  Where we start predicting the future and imaging what’s going to happen and telling us how terrible it’s going to be to have chemo.  We get into this mental spiral of fear, which adds pain to pain and suffering to suffering.  We need to learn how to deal what’s going on in our heads when we get a diagnosis.  The doctor will say: You have cancer.  That’s what I call: A life shock. You have cancer.  Then we give that moment meaning.  Cancer is loaded with more terrifying meanings than most words in the English language.  We need to learn to deal with what’s going through our heads, what we’re telling ourselves, what we’re predicting is going to happen.  We need tools to do that.  It’s not simple to describe that in a couple of minutes, but there are tools you can learn for how to deal with your fear.  A lot of what we tell ourselves is simply not true.  In fact, most of what we tell ourselves is not true. Joe:                 Wow, that is so true, Sophie.  I think you really captured the fact that cancer really changes your identity.  I know that you also mentioned that in your book, that in one point in time, that your doctor said to you, “Do not become a patient.” That advice, what did that mean to you? Sophie:            That was one of the most empowering things.  It makes me cry just remembering it.  Most empowering things anyone has ever said to me, at the darkest hour of my life.  What it meant to me was: Stay a person.  Live your life.  Don’t give your power to this disease.  It was quite an extraordinary thing for a doctor to say to someone.  Don’t become a patient.  In a way, it’s what propelled me to become a patient activist, because it’s so easy to lose your personhood when you become a cancer patient. Suddenly, you’re a patient and everyone treats you like a patient.  You want to scream: No, I’m still Sophie.  I’m still me, treat me as me.  I still have a life.  It was a very empowering thing to say to me.  I didn’t realise it at the time, but by the time I was there in the hospital system, because this was just the diagnosis moment, by the time I was in getting more and more scans, it just stayed with me all the time: Don’t be a patient.  Stay yourself.  Stay in charge.  It was an amazing thing for a doctor to say.  I will be forever grateful to him. Joe:                 Yes, that’s very powerful advice.  The system really doesn’t make it easy for us.  That’s why I guess I love your story about how you really put your foot down when you had the call about the radiation appointment.  Well, could you talk about that?  How was this moment meaningful to you? Sophie:            Well, that man was in my head a bit when I did that.  It’s funny, this was quite a controversial thing to do.  I didn’t know it was a controversial thing to do.  I want to be clear that most of the time, I accept my appointments and I know how difficult it is for these hospitals to plan these things.  In that moment, I was coughing blood, I could hardly breathe, I have multiple brain tumours.  I have tumours in my spine.  I was in deep water.  They were pressuring me, you’re got to do this now. I remember, it’s again, what I call a life shock moment, the nurse handing me my appointment on a piece of paper and saying: Here’s your appointment.  I looked at it and I knew inside me that if I fitted my life into my treatments, instead of my treatments into my life, I would be on a very fast downhill spiral psychologically.  It was a psychological thing.  The truth was, I wasn’t free that day.  I wasn’t just being difficult.  I wasn’t free that day.  I just said, “I’m not free that day.  Can I have another date?” She was like, what?  I didn’t know it was such an unusual thing.  It just seemed like, I’m not free that day, can you find me another date?  I think that was the moment that I took my power back from the disease and from the whole system. It was a turning point for me to say, “No, I’m going to run my life.  I’m still in charge of my life.  Even if I die, I’m going to stay in charge.” Since then, my oncologist and I have created an amazing partnership and I’m pretty much asked: When are you free, Mrs.  Savage.  Yes, I think that was the moment I took my power back. Joe:                 Yes, that’s very powerful, Sophie, because there are all of these expectations on us placed by the system, that you’re simply supposed to just put up with.  I remember, myself, that when I had the call from the oncologist saying, “We need to change your appointment.” There was no consideration.  I said to them, look, I’ve just come out of gruelling chemotherapy treatment, I’m going to get my results today.  I’m taking time off work, my wife is taking time off work, my mom is coming along.  I can’t just change it just because circumstances have changed.  I wasn’t being difficult, but it just struck me as there was this no please, no here was what happened, just you have to do this.  That just didn’t sit well with me at all. Sophie:            It doesn’t.  I think part of this is it’s an incredibly over-stretched system.  With over-stretched staff.  Thank god they’re there to help us.  It’s not necessary.  It’s the attitude that goes with it, Joe.  There’s an assumption.  As you say, a lack of: Can you do this?  Can you make this work?  There’s the lack of enquiry and the lack of connection.  Sometimes a lack of humanity.  That is what I think some patients, in a way, they buckle in the face of it.  It can be even more dispiriting than the original diagnosis because suddenly someone else is taking over my life and telling me what to do.  You can feel like a child again in those circumstances.  It takes a bit of backbone to say, “Actually, that’s not okay.” Joe:                 Yes, absolutely, because you lose so much control anyway that you have to make a conscious decision, just like you said, about taking it back.  The system is really not built for the patient.  That’s why you feel powerful.  I remember when I was diagnosed, you just feel like this rabbit in the headlights. Sophie:            You do, you really do.  There’s not much to pick you up with that side of it.  It’s not a doctor’s job to help you through your fear.  They’re not trained to do that, but I do think it’s their job to be aware that you’re scared, that you have emotional needs as well as psychological needs.  To be sensitive to that and to point you in the right direction for support.  I don’t think that’s a complicated thing to do. Joe:                 Yes, that’s exactly right.  You bring up a really interesting point, Sophie, because I remember that at no point did it occur to me going through treatment, or actually to any of the specialists, that maybe I’m struggling psychologically with it, and maybe I need some external help.  There was nothing in the system that said, “How are you doing?  Are you actually coping?” Sophie:            There are two charities, Penny Bron and Maggie’s, who give patients psychological and emotional support.t Maggie’s cancer centre is situated on hospital grounds.  I wish there was one on every hospital ground in the land, I really do.  I gave a talk at Maggie’s cancer centre, I think it was the one in Oxford, and it had been open for two or three years.  It was on the hospital ground.  No oncologist had ever walked through the doors to say, “What do you do here?” Had ever walked in to say, “What do you do here” and to find out what they offer.  That was hard for me to fathom. Joe:                 That’s just so disconnected. Sophie:            It’s so disconnected.  It’s on the doorstep.  I think they send their patients to Maggie’s because they know to say, “What are you doing?  What are you giving my patients?” I found that fascinating.  That’s how disconnected it can be. Joe:                 Wow.  Sophie, we touched on fear but there are so many conflicting emotions that we must untangle when you get cancer.  What advice do you have on that front?  Where do you start? Sophie:            Wow.  I think this is the main reason why I wrote the Cancer Whisperer, Joe, is because it’s such an important thing.  There are a lot of books on the market.  Cancer books are an industry now.  I read a lot of them, but I couldn’t find one that really helped people navigate the emotional psychological part.  It is very conflicting because I remember in my case, there was fear, obviously.  They didn’t think I’d make it six months.  That was a very terrifying thing for a mother of a four-year-old.  There’s also anger and regret.  I was riddled with regret about all the things I hadn’t don’t in my life that I wished I’d done. All the things I had done that I wished I hadn’t done.  I was stunned by the decks of regret that I have faced.  With it, grief, just enormous grief.  I can say more about that, but you have denial, you have fear, you have anger, you have regret, you have grief.  It’s like a cauldron inside you.  I hope my book provides some tools to help people with that, and a book is a book, there’s a limit.  I think it’s really important to reach out to centres like Maggie’s and Penny Bron, or even counsellors to sit down and say, “I’m scared.  I’m angry.  I’m grief-stricken” and get help with it.  It’s more than I can unravel in a short interview, but it’s doable. You don’t need years of therapy.  There are really practical tools.  I highly recommend, actually internationally, the more to life program, which is moretolife.org.  It’s an educational charity where I learnt everything I’ve really learnt about how to deal with this stuff.  You need to be fairly physically well to do their courses.  If you can’t do that, then there are places like Maggie’s and Penny Bron.  You need to reach out and face into it and many people numb out and try to be positive on top of it, but it comes back to bite you in the arse later. Joe:                 Yes, absolutely, Sophie.  Also, like you said, your daughter was four when you were diagnosed.  That’s a really tough thing to do, to explain it all.  How did you go about doing that? Sophie:            It was a really tricky – well, we were very clear about doing it, because my husband lost his father when he was six years old, and nobody told he what was going on.  Nobody told him how ill his father was, and suddenly, he was in hospital and then he was gone.  He wasn’t taken to the funeral, he didn’t get to say goodbye.  It was another era.  It had really a very long-lasting effect on him, to not know through his childhood what really happened.  We were very clear that we were going to tell her. Also, there was a good chance that I would die before she was five years old.  How do you tell a four-year-old?  We told her I had cancer.  We told her I might die, that she might not have a mummy anymore.  we kept it as simple as we could.  I wanted her to not be blindsided.  I wanted her to be as ready as she could be at that age.  We needed to talk about what does death mean?  That mummy wouldn’t be here anymore.  That I’d be in the clouds and in the trees and I’d always look over her.  It was heart-wrenching, Joe. It was heart-wrenching.  I remember her, when she was a bit older, just raging at god, and saying, “I want my mummy here.  Please don’t take her to heaven.  Please leave her here.” It’s been tough on her, but we’ve included her.  We don’t over-dramatize.  I’m very well right now, there’s nothing to fuss about.  I had multiple tumours three times, I nearly died, I would say, last year.  We didn’t think I’d make Christmas.  We keep needing to revisit it.  She’s older now.  It’s harder now in a way than when she was four because she lost her grandfather two months ago, she knows what death is now.  In a way, it’s harder as she gets older.  We’ve included her, and I think that has made it much easier for her.  The thing about kids is, they pick up everything. If you don’t tell them what’s going on, they make it up in their own heads.  There’s a lot of research that shows that they think they’ve done something wrong.  They’re picking things up and they think, “I’ve done something wrong.  Something’s my fault.” They turn it on themselves.  That’s why I think it’s really important to be truthful with our children, however devastating the truth is. Joe:                 Yes, Sophie, I can so relate to that because my son, who was around three when I was diagnosed, I really felt that when we made Michael a part of it all, when he had his own toys with me at the hospital, when we made a doctor’s kit for him. Sophie:            Brilliant.  I love that. Joe:                 He had his own lanyard with a picture. Sophie:            Brilliant. Joe:                 We did all of that.  Then we had this third birthday here in the oncology ward.  We had three oncology nurses sing happy birthday.  That was a moment when it all became normal.  It all became a part of life.  I think he stopped freaking out because he realised that all of a sudden, he’s included in all of this.  We didn’t really know how to handle it, but now he’s included, it kind of made it all normal. Sophie:            That is such a beautiful example of it.  Honestly, it brings tears to my eyes.  It becomes normal.  It becomes normal when you do it that way.  It’s just part of their day.  Mommy’s gone for a treatment, mommy’s in hospital, so what?  It’s like a known thing after a while.  Gabriella has grown up with it for four years now, nearly four years.  It’s just part of her world. Joe:                 Absolutely, Sophie.  Yes, you have the compass, your fantastic system for dealing with cancer.  Can you talk about what that is?  How did you come up with it?  How does it work? Sophie:            In my book, there’s a chapter on each step of the compass.  It includes things like, pointing north is coming to terms.  That’s about coming to terms with what you’re dealing with, facing into it, getting through the fear and the denial.  There’s a chapter about understanding your disease and becoming an expert in your own disease.  I think that’s one of the reasons I’m still here, is I’m an expert in my own disease now.  I know it as well as my doctors know it, sometimes I know it better.  I’ve had moments with doctors when I’ve known what to do and they haven’t known what to do.  There’s something about stabilizing your body.  There’s a chapter about grief.  There’s a chapter about clearing all the mind talk in your head. I wanted to just create, because it’s the place on the map where the map runs out, so I wanted to create a compass for people at the point on the map where the map runs out.  Where do I go?  How do I go?  A compass that guides them to attend to their mind, heart, and spirit, as well as their body.  We focus on the body, the body, the body, the body, but where is the guidance?  We’re integrated beings.  Our disease is all connected, physical disease is connected to emotional dis-ease.  Disease.  Disease means dis-ease.  We need to get that.  Disease means dis-ease. We need to be attending to – in order to live, we may not even make it, Joe.  I may not make it.  I may not make it.  I’ve made it longer than anyone.  I can go to my death bed knowing that I have healed parts of my being that needed healing.  I have moved into what I call my purpose in life.  I have more connection, more authentic friendships, a clearer sense of purpose, even of destiny, than I ever had before cancer.  That doesn’t mean I will beat cancer, which is a phrase I hate.  It doesn’t mean I’m going to overcome this thing or make it.  I don’t know how long I’m going to have. Let us have all that we can have while we can have it.  Let us live as fully as we can live.  Cancer is a massive wake-up call to say, will you claim your life?  Will you claim your life?  What is it you want to life that you haven’t lived?  Who is it you want to be that you haven’t let yourself be?  That is the gift.  That is the gift of cancer.  That is why I’m profoundly grateful that I’ve had this experience.  I would give it back tomorrow in order to raise my child into adulthood, but in some ways, it’s been the making of me as a human being. I’m making a bigger difference than I have before.  I’ve done this work for a long time.  One of the chapters in my book is called: Knowing your purpose.  The compass is a guide to not just attending to your body and your fear, but to engage with your life in a new way. Joe:                 That is very profound, Sophie.  I guess that’s the theme for me, reading through your book, that of transformation, that of transforming and feeling the gratitude and bitterness and hope and darken to light.  Does this reflect how you feel about cancer?  This whole transformation theme? Sophie:            I think it’s been very transformational.  Those shifts have certainly occurred.  Fear into gratitude and bitterness into hope, that has certainly occurred.  Massively.  It’s not that simplistic, because I move between fear and gratitude regularly.  I didn’t move from fear to gratitude and now I’m in gratitude every day.  No, I’m a human being, I haven’t transcended fear, I have confronted it and I continue to do so whenever it raises its ugly lying head.  I confront it again and again and again and again and again and I move myself back to gratitude.  It’s an ongoing practice. I don’t think we move from one to the other and that’s it.  I think it takes work and commitment.  I lose my hope and I have very dark days.  I have days of despair and days of hopelessness, and when I don’t know how I’m going to take the next step.  I know what to do with those things and I know how to move myself out of that state and then back into gratitude.  I’m not really keen on the dark to the light thing story, because it’s like the bad to the good, because it’s too this or that.  You know, dark or light.  I have dark days, I have light days.  On this journey, I have found light inside the darkness. Not beyond the darkness.  Like, dark and then light.  There’s light right inside the darkness.  It’s the most dazzling light of all because it surprises you.  On my darkest days, I have found wonder and awe and grace that I could not have predicted or imagined.  I’m not afraid of the dark anymore, because I know there’s light in the darkness.  There literally is, if you go out on a dark night and your eyes adjust, you’ll see the light inside the black.  That’s what I hope people living with this can find a way to find.  I’m not a false-positive person.  I don’t like positivity.  I think it’s like putting icing on dog-shit and calling it a cake.  I’m about authenticity.  That means if my time is up, facing that my time is up, and saying, yes to death, as well as saying yes to life. Finding the grace and the beauty in dying as well as living.  That’s what I’m really passionate about.  I think I’ve helped some cancer patients die peacefully.  I’m probably prouder of that than of anything I’ve contributed to them staying alive.  Yes, there’s light in the darkness, Joe.  There’s also, we can rest in peace before we die. Joe:                 That’s very powerful, Sophie.  You have a very distinct take on grief.  Could you talk about that? Sophie:            Yes.  I used to think grief was something you needed to get through when there was a devasting loss in your life and something that brought closure.  I bought into all of those – what I think now – are myths about grief.  Grief is often thrown in with fear and anger.  There are different types of emotions, Joe, there are separating emotions that separate us from who we are and our connection with others and our connection with life itself, fear, anger, resentment, envy, jealously, bitterness.  Then there are feelings that connect us with ourselves, others, and with life, like love, joy, excitement, happiness. They’re very connecting emotions.  Well, so is grief.  Grief opens the heart.  It doesn’t close the heart, like fear does, it opens the heart.  It’s an incredibly healing force.  It hit me much harder than my fear, I was overwhelmed with grief when I was diagnosed.  It’s become my friend.  I have waves of it every so often.  I don’t get through grief.  I’ve taken it by the hand.  It walks with me every day.  It reminds me of everything that’s precious to me and everything I love.  It keeps me connected to life.  I think it’s the other face of love. I think it’s another name for love, even, because we grieve that of which we love.  I’ve become a very big fan of grief and I actually would like to do more work to help redefine our understanding of grief in this culture.  That it’s not a heavy burdensome.  Of course, there’s all of that, but I think it’s one of the most healing forces we can embrace in life. Joe:                 Yes, that’s really powerful, Sophie, because, yes, for me, I think I’ve been stuck in the old paradigm of where grief is something you need to get over, like a speed hump, you know?  That’s not really how it works. Sophie:            Yes, exactly.  It’s not how it works.  My father died two months ago, of lung cancer, as it happens, we were a right pair.  I have waves of grief.  It’s still very fresh for me and raw.  I had the privilege to be there when he died and to help him find a little peace before he left.  He so didn’t want to leave.  I don’t want my grief about my dad to – I don’t want to get over it.  I want to hold it in my heart for as long as I walk this earth, because I hold him in my heart with it.  It keeps me connected with him.  It doesn’t have to be heavy every day.  I’ve had grief that’s brought me to my knees. I don’t want to get over it.  I’m happy and content to have it live in my heart and him with it, because it keeps me connected to my dad and my loss of my dad, and my desire to remember him and honour him and speak to him at night with my daughter, which she likes to do.  Can we talk to Papa?  She says.  Grief helps us to do that.  Yes, it’s a companion I welcome. Joe:                 Yes, I’m sorry to hear about your dad, Sophie.  I feel like you say, the connection is still there. Sophie:            He had what we call: A good innings.  She had a good innings. Joe:                 Sophie, in your book, you talk about the importance of dealing with moments when life shocks you with an event that you weren’t expecting.  Why is that important and how does it work? Sophie:            Okay, this is an important question because we often, in psychology and in the mind/body/spirit world, we talk about life challenges and life events and trigger events.  Those things are important.  Cancer is a life challenge, or a life event, but hearing the words, “You have 27 brain tumours.” Is a life shock.  It’s a very specific moment in time.  I’ve been teaching about life shocks for 37 years.  I was taught about them from some genius of the 20th century called: Brad Brown.  That’s another story. When you focus on these moments in time.  When you engage with these very precise specific moments that hit you the hardest, they’re the ones that hit you the hardest: Mrs.  Savage, you have 27 brain tumours.  For example.  You connect with that moment in time.  First, when you go back to that moment, all the feelings and all the thoughts are stored, like a file, in the memory of that moment.  Just by reexperiencing a life shock, you open up the psyche, you open up the feelings.  You open up all the beliefs that’s running.  You can bring it into the clear light of day and deal with it.  It’s an amazing thing to engage with those moments. It’s also, god, I could talk for an hour on this, I’ll try to bottom-line it.  Have you ever wondered if life is trying to tell you something?  Have you ever noticed patterns?  Why is this happening again?  Why am I in this kind of relationship again?  What’s going on?  Life is trying to tell you something.  It really is trying to tell you something.  It’s saying, wake up, you are not what you fear you are, you are not what you think, you are not what you believe.  Life is not what you think, what you believe, wake up.  Wake up. It’s knocking on the door, every single day, trying to get our attention.  Hello?  Hello?  A life shock is a collision point between how I perceive the world and how the world really is.  We have dozens a day.  It’s every unexpected, unwanted moment that happens.  Every one of them is an opportunity for awakening a transformation.  That is the subject of my next book, actually, because it’s such a big subject, I’ve written a book about it. Joe:                 Fantastic, let’s talk about your next book.  Tell us more about that. Sophie:            Well, it’s called: Life Shocks and How to Love Them.  It’s out in June the 14th.  I would say it’s the philosophy behind the Cancer Whisperer.  When I became a cancer whisperer, the way I met that disease was because I had spent 20 years of my life learning and teaching people how to engage with life shocks and how to meet them as opportunities for profound transformation.  This book is really what’s behind the Cancer Whisperer.  It does continue my cancer story.  My cancer story continues within the book and all that I’m continuing to learn from my cancer life shocks, because cancer gives me many life shocks. It’s about more than that.  It’s not just about illness, it’s about life, and how to be fully alive.  There are chapters about things like beauty, success, power, and life shocks in these arenas and how we can learn from them, how we can engage with them.  There are some very practical tools in it for how to do that. Joe:                 That’s fantastic, Sophie.  I really look forward to it.  If someone wanted to learn more about you, and about your books, what would they do? Sophie:            Firstly, go to Sophiesavage.com.  I’m also on Facebook.  I have a group called: The Cancer Whisperers.  I’m Sophie Savage, the cancer whisperer.  I have a page.  Most of it, you can find on Sophiesavage.com.  They can also go to: Moretolife.org, which is the program in which I teach about life shocks.  There are courses about the kind of work that I do, if anyone really wants to do some much deeper and sustainably life-changing work.  I highly recommend that.  I’m a trainer in that program.  It’s an educational charity.  Sophiesavage.com is really the place to start. Joe:                 Cool.  Fantastic.  Thank you so much, Sophie.  It has been incredibly profound. Sophie:            Thank you.  My pleasure.  Thank you so much.  

When you’re dealing with cancer, the spotlight is on you. But what happens when your loved one has cancer?  For them, it’s just as tough if not more, because not only are they trying to help you and be there for you, they also want to have some sort of normal life, just living from day to day. We don’t get to hear this side of the cancer story.  That’s why today you’re going to meet Jill.  Jill’s partner had prostate cancer and Jill has some profound insights about what this experience was like for her. She shares some unique strategies that enabled her and her partner to deal with cancer in a very proactive way, by taking back control, by taking the power away from cancer.  That’s what it’s all about, isn’t it? Here is what we cover in this episode:  Why it’s hard to bounce back after cancer The profound shock when your loved one has cancer On dealing with fear and uncertainty Having a courageous conversation with those you care about Practising gratitude daily How some people in your life fade away and much, much more! Links Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Full Transcript Joe:                 I want to start with something we just touched on a few minutes ago.  We often have conversations and I feel like we should be recording this, and this was one of them.We were talking about gratitude and how expressing gratitude in the right way can really make you feel better and close the loop in some ways.  Can you talk about that in relation to cancer and the experience that you guys went through? Jill:                   When Sam was diagnosed with prostate cancer, that was six years ago.  It was a huge shock.  I think it woke us up.  It made me realise that throughout life, we take our loved ones, in particular, for granted.  We expect them to be there, we expect them to do things.  Sometimes we forget to say thanks.  It’s not just thanks, it’s showing your appreciation, that you’re grateful for them, one, being in your life, and two, doing the things that they’re doing and showing you how they love and support you in return.  It’s that acknowledgment of their existence, of their experience and your combined experience.  It’s making sure that its always at front of mind now.                         On a daily basis, I let Sam know how I’m grateful for the things that he does.  It’s not being sarcastic or condescending, it’s coming from the heart and it’s like, thanks, I appreciate what you’ve done.  It’s showing that type of appreciation.  Right throughout life, Sam has always been my rock, he’s been my go-to person.  Early in our marriage, we sat, and we had long conversations, as you do when you’re young.  We talked about what path we wanted to take as a couple and individually.  I always wanted to go on and do study and Sam was interested.  That was fine.  He enabled me to fulfil my dreams. He always supported me.  We’ve got three kids.  When they were younger, Sam became their primary carer at one stage because he was working shift work.  It’s like, thank you for doing that, I appreciate that.  Sometimes we just forget, and we take it for granted.  Yes, this is going to happen and we all get on because we’re all busy living our lives, doing our things, thinking about work, thinking about home, the garden, the kids, finances, whatever.  Focusing on the individual and being grateful for them being in your life. Joe:                 Exactly.  That’s so well put, Jill.  I think in many cases, like you say, we forget and start to take things for granted and cancer becomes this big wake-up call.  It’s a different modality because all of a sudden, every day is a gift. Jill:                   Yes, it is.  You actually value the time that you’re having, rather than sitting thinking, “I wish it was next month because we’re going to do this.”  Or, I wish it was Christmas time, or I wish it was next year.  Yes, it’s fine to look forward to things but still appreciate every day and the gift that you’ve been given.  When Sam was diagnosed with cancer, everything became a blur in an instant.  Time stopped and all of a sudden, it was like there was nothing there.  My whole life flashed before me.  One, I was sitting thinking, I wonder how Sam’s coping with this news. Then I’m thinking, I’m not going to have my life-long partner.  That seriously is a wake-up call, especially if you’ve found your soul mate and you’ve built such a strong relationship with each other.  To have someone tell you that, “Yes, you’ve got cancer.” While the prognosis is quite good, you’ve still heard that C-word, that stops everything dead in its tracks.  All of a sudden, the plans and dreams that you’ve had for the future have to be re-thought.  That’s why it comes back to being grateful for each day. We still have plans for the future, we still look forward to holidays, but we also look at each other daily and say, “Thank you.” It just doesn’t mean the words, it’s by actions and affection and building things together.  We’ve built a family, we’ve built a friendship circle.  It’s about being grateful for all of that, as well. Joe:                 Absolutely.  Jill, this is such an important thing, expressing gratitude and living in the moment.  How do you do that?  Does that come naturally, or did you have to build it into your daily practice? Jill:                   Well, Sam and I have been married for 40-odd years, and because we’d gotten into such a routine of expecting each other to be there, you nearly go into automatic.  We did have to retrain ourselves to think about bringing it to front of mind.  Doing that whole mindfulness thing.  Being in the moment rather than thinking, while I was sitting next to Sam, “I wonder what the dog’s doing?” It’s fine to have those thoughts but come back and focus on the person that you’re with and the experience that you’re having at that particular time.  It’s those memories that you build as you’re going through are the things that you hold onto that give you hope. Joe:                 Absolutely.  I even noticed in my own experience, being in the moment and becoming a part of, for example, if I was there with my son, if I was with Michael, when I stopped myself from checking the phone or thinking about other plans and just going crazy with anything, I would have a huge pillow fight.  It gave me such a tremendous lift.  Life, it became such a totally different experience.  Or when I would be with my wife, with Olly, when we would be sitting down having conversation and when we were fully engaged and not thinking about anything else.  It just gives you so much clarity into everyday life.  I think cancer just wakes you up and shakes you out of things and you go, no, this is what matters and it makes you feel so much better, right? Jill:                   Yes.  When you’re diagnosed with cancer, it’s like some people look at it as a life sentence, whereas, we looked at it as we had opportunities.  We had choices.  We could sit and be sorry for ourselves and spend the rest of our days worrying about what was on the horizon, or we could choose to experience life and be grateful for the things that we’ve got and the experiences that we have.  That’s what we chose.  It’s not easy, it is very draining.  I see it from two different aspects, one from the cancer sufferer. All of a sudden, you’re faced with your own mortality and that’s hard because we’d all like to think we’d live forever.  It’s like especially if you’re young, you’ve got your life ahead of you.  When Sam was diagnosed with cancer he was in his mid-50s, and it’s like we still had a lot of living to do.  He was faced with that and he turned around and said, “I don’t want to die.” From a carer’s point of view, I didn’t want him to die either.  We both had this mutual agreement that we were going to live for the moment, without be frivolous and silly, rather than saying, in ten years’ time we do this, we do it now.  It’s like, we also learnt that lesson from Sam’s dad.  Sam’s dad was a really hard worker all of this life.  He worked shift work, he sacrificed everything for the family.  We kept saying to him, “Why don’t you take a break?  Go on a holiday.” He said, “When I retire, I’ll do that.” When he retired, he was diagnosed with lung cancer and died within a year.  He never got that opportunity. That was a wake-up call for us back then, that was 30-odd years ago, that never put anything off, always do things as you’re going through.  Our kids have grown with us and experienced things with us over the years.  We’ve got some amazing memories.  They’re the things that keep you going in the hard times.  When you face the black tunnel sort of thing, where you feel like you don’t know how you’re going to get through it, we draw on the memories and that gives us strength again.  Thinking, we’ve actually done and achieved some amazing things with our kids, with ourselves, with our friends and work colleagues. Joe:                 That’s very powerful, Jill.  I just want to pick up on what you said about choice.  That sometimes pain in mandatory but really, that suffering is optional.  That we choose the experience and how we deal with tough times. Jill:                   Exactly.  We sat back and said, okay, it’s not Sam’s fault that he got cancer, but we’re responsible for our emotions and feelings.  We’ve taken responsibility for that, rather than putting the blame on we didn’t eat properly or there are too many chemicals in our environment, or whatever.  We’ve taken responsibility for our emotions.  We’ve got those choices.  It’s about taking that responsibility.  While cancer at times can dictate how you have to live, you can still choose how you do live.  It’s having that support and that friendship around you. Joe:                 Absolutely, Jill.  In terms of, obviously, from the time of diagnosis to treatment, to the reality of now, there’s a lot of ups and downs that happened.  This everyday reality of how you were dealing with it, mentally, emotionally, has that changed over time? Jill:                   I still get neurotic.  When Sam was first diagnosed, I mentioned that I saw my whole life go in front of my eyes.  It took us a little while to come to terms with it.  It’s nearly like if we eat this and if we do that, it might go away.  It doesn’t go away.  It’s there.  It’s like, okay, we need to now deal with this.  Sam went through treatment and every three months he had to go in and have tests.  Leading up to that test, I get really scared, Sam gets really worried.  Until you actually get the results from those tests and you go, “We’re okay, we’ve passed this” and you get onto the next one.  Leading up to that again, you still get scared and you still get neurotic and you still worry.  That even happens today.  Sam’s now at 18-month check-ups, which is really good. I’m always vigilant.  With prostate cancer, it can turn into metastatic cancer in the spine.  If Sam comes and complains of back ache, the first thing my mind does is go to, “Has the cancer spread?” Yes, it is an emotional rollercoaster going through that, but you have to keep going.  I haven’t felt the support from external organisations.  I’ve felt the support from the bond that Sam and I have.  We sit, and we talk about it.  Then, once again, we plan.  Well, if it’s this, we can do that, if it’s not, then, yes, let’s go and do something different.  It’s around that taking control and responsibility for how your life ends up. Joe:                 I love what you say about taking control because I think that’s such a huge thing.  For me, it was a big moment when I accepted cancer, because when I had my first initial diagnosis and I had my procedure and I thought that maybe this is it, maybe it’s going away, and I pushed this reality away.  When it came back, and I had to go for chemo and all this stuff, it really hit me over the head with it.  I realised that it happened because I was denying the reality of what was happening.  I was hoping that maybe it’s going to go away, but it doesn’t.  It’s about acknowledging that it’s happening and starting to deal with it, having an action plan and executing, right? Jill:                   Yes, exactly.  Like I said, you’ve got choices.  Initially, when Sam was diagnosed, we went through denial and it was like, “This is happening.  This can’t be happening.” Then we were really angry, well, why has this happened to us?  We’re good people.  It takes you on a whole journey of exploring what your values are as a person.  Denial, anger, and then you think, “Well, if we eat this way, maybe it’ll go away.” It’s that bargaining.  That was really bizarre.  We got quite caught up in having to eat organic foods. We’ve now gone back to eating normal foods.  It’s like you try and grab hold of anything that you think is going to make this cancer go away, rather than acknowledging that it’s actually there.  It’s not letting it consume your whole life.  It’s like, okay, the cancer is part of me, but it doesn’t define who I am.  My family, my friends, and the things that I do, and my values define who I am.  It’s being authentic to yourself.  I think that takes a while to work through.  I know it did with us.  While Sam was on his three-month checks after his procedure and everything, it took us quite a while to work through it.  We were very fortunate that we’ve got a close family circle and we’ve got really close friends.  Some of our friends dropped off along the way.  They didn’t know how to do it, that cancer word is really scary.  What’s going to happen? Are they going to disappear out of my life?  Stuff like that.  Some of our friends couldn’t face it and couldn’t talk to Sam.  That was really quite sad for Sam, but then the thing that kept him going and me was our close-knit family and our close circle of friends. Joe:                 Yes, that’s fantastic.  I want to touch on the friends bit.  You said that it’s because they were afraid, you feel that they didn’t know what to say, or is that what it is?  Is it just the awkwardness of dealing with it? Jill:                   It’s awkwardness, they didn’t know what to say, they didn’t know what it really meant.  We all hear cancer and immediately we think of death.  None of us like to think of death.  It’s like they were avoiding the issue.  it’s like, I’m not angry at these people, it’s just where they were in that point in their lives.  We need to be able to talk about death, dying, cancer, and not feel bad about it.  It’s like, it’s a fact of life. Joe:                 If you can’t talk about it, then what are friends for? Jill:                   Exactly.  It’s finding that strength and it’s having that courageous conversation.  For Sam to sit down with our close circle of friends and especially our kids, and say, “I have been diagnosed with cancer.” That was like putting it in concrete.  It became real at that point.  Whereas, up until then, it was like, there was that denial.  It might go away.  That anger that, why did it happen to me?  Once he actually could sit down and verbalise it and say, it’s like, okay.  The kids would say to us, well, what’s going to happen?  It’s thinking about it, to having a goal, and then that action plan and working through it.  Then you actually start to feel like you’re in control again. Joe:                 Yes, Jill, I feel that with cancer, and something you just mentioned, when Sam was breaking the news to your kids, what often happens, and I know that this was in my case when I was going through treatment, I think that my mom and my wife were under more pressure than I was.  They were really struggling with it more than I was, because the way I see it, if you have cancer, the spotlight is on you.  If you, for example, are the partner, not only do you have to be the rock who supports your partner through it, you also have to deal with all of this daily life, and you have to try to maintain some sort of resemblance of normality.  How was that experience for you and how did you deal with this all? Jill:                   It was very draining.  As you mentioned, the cancer sufferer is in the spotlight, and rightly so.  They’re the one who’s going through the treatment, but I felt I didn’t have the support.  Up until Sam was diagnosed with cancer, we used to share responsibilities.  Like, finances, cooking, cleaning, all of that.  When Sam was actually first diagnosed, I took over the finances, I took over all the cleaning, I took over all the cooking, I went to work full-time.  That was a strain on me.  There really wasn’t anywhere that I felt that I could turn.  I had to be the strong one because I had to support Sam. Even now, I’m forever vigilant for how he is.  It’s like it’s always in the back of my mind, it’s something that you never forget.  It’s like, “How are you?  Are you okay?  Thank you for being there”, sort of thing.  It’s like the carer needs as much support as the person with the cancer, the sufferer.  I didn’t feel that there were many organisations or much information for me going through this.  When Sam was first diagnosed, the way I deal with things is I read about it and I study.  Then I can absorb the information and I can think, okay, well, this is the direction I need to go in.  There was very limited information for me on prostate cancer within Australia.  I found American sites and Googled all of that. Is it relevant in Australia?  I had no idea.  It’s like, the statistics that they were giving, are they the same type of statistics in Australia?  Possibly not, I didn’t know.  I still don’t know.  You can get caught up too much in, yes, you’ve got a life expectancy of five years, or ten years.  The percentage of people who die within those times.  If you let that dictate, you’ll miss the life experiences as you’re going through.  It’s like, okay, I need to be responsible for myself and how I can be strong.  I do, I breakdown every now and then, but I’ve got, like I mentioned, that family support, and our close friends.  Being able to talk about it with somebody helps share the load. Joe:                 How do you talk about it?  Sometimes it’s a hard thing to bring up.  How do you talk about it?  What do you do? Jill:                   When Sam was initially diagnosed, when we sat and told our kids, we were sitting around the dinner table, as we do every week.  We’ve got this relationship with our kids, where everything is open and honest, and we discuss the good, the bad, and the ugly.  We sat, and we said, we’ve got some hard news to tell you.  It was, like, take a deep breath, here we go.  Sam actually told the kids.  It was coming from him and I was there.  Then we all sat and cried.  All gave each other a hug and said, “Okay, what are we going to do about this?” It was getting that support initially.  Having that courageous conversation and then having that support around.  When I’m having a hard time, I sit, and I talk to my kids.  They’re all adult.  I talk to my friends. I do tell them that when Sam is coming up for his next round of tests, I get really worried.  I do tell them that if Sam has aches and pains in his body, I do think, “Has the cancer spread?” Our friends now do the same thing for him.  If Sam is saying, “I’ve got a really bad back today”, and I say, “Have you had that checked?” What can we do to help?  Do you want us to come around to do the gardening and stuff like that? Joe:                 That’s the way. Jill:                   Yes.  It’s sharing the experience. Joe:                 Another thing you made me think of, and I’m no expert, but I was watching a documentary one day, and I saw this antelope or a zebra, it ran away from the lion, and as soon as it escaped, it started shivering, it literally started shaking.  They said that this is how this animal processed all of this fear and tension that was inside it.  I think that as human, they don’t really do that enough.  What you talked about, it’s okay to break down and cry because you have to let it out, right? Jill:                   You do.  You need to be in touch with how you’re actually feeling.  You need to be able to express those feelings.  I’m sad, I’m scared, because once you’ve shared it, once you’ve verbalised it, it helps you deal with it.  Or at least that’s what we found in our experience.  Initially when Sam was diagnosed with the cancer, I was really run down because my whole focus was making sure he was living.  I took on the responsibility for everything initially.  I found that I got colds and flu and bronchitis that I had to take a step back and say, “I need to look after me, so I can care for Sam.” Now, he wasn’t an invalid, and he’s not an invalid, but it’s that whole mentally draining experience. I do.  I look after myself.  I have to make sure that I’m well.  I mediate.  I do, and I get stressed.  I’ve got work pressures, I’ve got family pressures, financial pressures.  All part of life that I’ve got into the habit, where I mediate before I go to sleep each night.  I sit, and I have ten minutes, just for me, to clear my mind.  Sometimes I even go through an action plan in my head, because I can’t help doing that. Joe:                 I’m not surprised. Jill:                   Then it helps me relax and once again, I’m responsible and I can be in control of how I act and how I deal with things.  It’s really important, especially for the carer, the sufferer needs to find something that will give them hope, so that they can hold onto that.  The carer needs to find something to give them support and calmness to be able to deal with the things that you’re going through. Joe:                 That’s very profound, Jill.  Especially the part about putting yourself first and finding a way for you, first and foremost as the carer, to find a way to deal with it, to deal with pressure.  You mentioned meditation.  How did you get into that?  I think mediation and mindfulness are some of those things that we all hear about, but they can be hard to put into daily practice.  How do you go around doing that? Jill:                   I do a lot of reading.  I’ve done study on all sorts of things.  That when I find something that I think might be of interest, I’ll explore it even further, then I will try it out.  I’m the sort of person that I need to take the theory and then experience it.  It becomes practical for me.  Mindfulness, that was really an interesting topic for me.  I did, I read about it and I’ve tried to do it.  You need to be disciplined in yourself.  It’s like I keep having to remind myself to be present in the moment.  You don’t know when the next moment will be, and cancer is that wake-up call.  I think people generally today are so caught up with living and busy lives that we forget that you need to be in the moment. You do, you need to be disciplined.  I read a lot, so that helps me explore different things that work for me.  Like, when I say I do mediation, I’m not some strange hippy that goes off and sits naked in amongst trees, but if I’m really stressed, I find being outside gives me solace.  It helps calm me down.  Sam and I, each week, make sure that we go out and experience parks or trees or nature or the beach or something like that.  There’s a calmness, a stillness about it.  It reminds you that things just go on.  That’s part of the mediation, as well. Joe:                 Yes, absolutely, just making it part of your everyday experience. Jill:                   Yes, experience. Joe:                 You touched on having practical things that fell on you.  I think you said that you didn’t really have much help as you would have liked.  Do you think it’s okay to ask for help?  Would you have done that differently if you had the chance? Jill:                   Looking back, yes, I would do it differently.  We’re all very proud.  No one likes to think that my partner, my husband has got cancer.  Have I failed as a wife because he’s got cancer?  You become introspective and you think, “What can I do?  I need to do something to make this right.” Whereas, looking back, I should have reached out more.  I’m sure there are resources out there, I still haven’t found them.  I’m sure they’re there somewhere, but it was me that didn’t reach out. I could have gone back to our oncologist, and I did a couple of times, and what I got was, “Don’t worry about it.” That is superficial.  I needed more information so that I could understand, so that I didn’t have to worry about it.  It’s overcoming your personal inhibitions to be able to say, “I need help.” From a carer’s point of view, you’re so focused on the sufferer that you don’t want to have to see that you’re needy, so you don’t necessarily say, “I need help.” Joe:                 That’s so true.  I remember that we had friends saying to both my wife and myself saying, “Just let me know how I can help.” I remember that was such an infuriating experience because you kind of go, “Well, I wish you would be a little bit more specific and offered something helpful and practical.” I’m not going to just come up with a favour to ask you.  At the same time, I guess people want to help but they really don’t know how.  They really need to be guided sometimes, right? Jill:                   They do.  You need to find the inner strength to be able to say, “I need somebody to help me do the gardening.  Or I need somebody to take the dog for a walk.  Or I need somebody to help me with the cooking” or stuff like that.  It’s finding that inner strength.  As I mentioned, your pride gets in the way, because we all like to think that we’re able to do things and you struggle to say, “I need help.” Joe:                 I really want to thank you for your time.  It’s been absolutely fantastic. Jill:                   Okay.  Thank you, Joe. Joe:                 Thank you. Jill:                   Good luck on your journey. Joe:                 Thanks.  

Who Is Going To Stay With You Through Cancer Listen, I don’t know about you, but for me, honesty has become such a rare commodity these days because it’s so hard to accomplish – you have to set aside your ego, you have to put your worries aside about how other people see you, but it also gives you this incredible power of clarity.  Honest – that is how I would describe Matt Featherstone, our guest today.  Matt is for real.  Matt doesn’t screw around. He takes his honesty and he turns it into insight, into how you can shift your focus during cancer, into how you can manage your energy.  Who is going to stay with you through cancer? Matt is going to share some fantastic advice for dealing with cancer, including: How some people in your life fall away just when you need them most Why Matt’s little c reframe can help put cancer in its place How the modality of cancer scares people off 3 things that are inherently different about men facing cancer Setting the rules up to deal with cancer as a family The importance of peer support during these tough times Matt’s top lessons learned about dealing with cancer Who is going to stay with you through cancer Links Cancer Connect Men’s Psycho-social needs Webinar Matt Featherstone (Cancer Council) Episode 008: Staying Positive Despite Cancer Full Transcript Joe:                 Matt, thank you so much for doing this, and I’m really looking forward to this. Matt:                Yes, very happy to help.  It’s a worthy cause. Joe:                 Yes, absolutely.  First, I want to ask, how did you react when you first found out that you had cancer? Matt:                Yes, I remember it distinctly, it’s one of those big life events, isn’t it?  I suppose I was very similar to many blokes.  We’ve got 19 things going on in our heads at once, and I got a call from my GP and I remember coming into the office and actually in the office with my wife, and saying, “Sweetie, I’ve got some bad news, we’d better put aside some time to talk.” I didn’t drop everything.  I think it took me quite some time that evening before I even stopped work and went into the other office and said, “Look, we’ve got a problem that’s got nothing to do with the business, we’ve got a problem here.” I guess the short answer is, I was a bit numb, actually, I wasn’t expecting it.  I think it was, as I say, quite some hours, then, of course, seeing her face really made a very big difference to my evening.  We literally turned the entire office off and just went and sat down and had a cup of coffee and went, “Well, we weren’t expecting that, what are we going to do?” It was a bit of a shock. Joe:                 Yes, exactly, like you said, I felt shocked, I felt numb, and I felt the whole world stopped and came to a close, like everything slowed down.  The whole sound was muffled.  It was just a really bizarre feeling because it’s unexpected, right. Matt:                It is, it’s a very unusual experience.  I suppose one of the positive things is, Joe, that since then, I guess like most people, we’ve had other things that have happened out of left field, not expecting them.  Sometimes it’s nothing to do with health but just things in the family.  I must admit, we, as a family unit, now we’re better at taking unexpected bad news and doing something with it than we were before.  There was an upside. Joe:                 Yes, absolutely.  That’s a positive take on it, Matt.  I think that’s because you’re confronted with it, you’re forced to deal with it.  You have to find a way. Matt:                Yes, that’s right.  You’re exactly right, Joe.  It’s almost like there’s a moment now that you can’t go back on.  The die is cast, and you need to do something.  You’re right.  It’s a very specific type of life event that you’ve just got to deal with in a sense, yes, you’re right. Joe:                 Absolutely.  Your family, your friends, you just mentioned your wide, she obviously was in a shock, but how did they react, and did they support you in a way that you wanted to be supported? Matt:                That’s a great question.  Firstly, I would say that some of my friends didn’t make it through the experience of being a friend with my while I had cancer.  At the time, I think I was a little disappointed, I think, would be the honest way of describing that.  I must admit, now that I’ve come through five years of cancer-free.  Joe, that was a great celebration, I must say, that was a big party.  I now look back on the new group of friends, but at least the refresh group of friends that I have, let’s put it that way.  I must say, the friends that I have now, they have more of an alignment I think with the way that I view the world and cancer.  I think that’s a very good thing. I think that’s a very positive thing because I still occasionally find myself thinking about cancer and some of the issues that I had and the way I responded and this newer group of friends of mine are very useful, if I could use that word.  They’re very supportive, that’s a better word.  They’re very supportive.  Sometimes I say, “I kind of want to talk about something that happened when I had cancer.” I now think it was a positive experience in terms of my friends.  In terms of my family, yes, my immediate family were very good.  I guess because they’re right there with me.  They’re in the same house as me, and at the time, anyway, our kids have grown up now, but at the time, they were here.  They couldn’t remove themselves from the situation at all. They responded very well, my wife and my immediate family.  My extended family, you know, I’m talking about parents and brothers and look, that was variable.  Without naming names, but I had some issues there with people that found it very difficult to come to grips with this.  The way they dealt with it was to keep their contact with me to a minimum.  I get why, I do, I understand why. Joe:                 Yes, why? Matt:                In summary, I had a type of cancer that is partially hereditary, in the sense that you’re genetically predisposed to it.  That meant that males in my extended family started thinking obviously about themselves, I get that.  I totally get it.  That meant that part of their response was less because they were thinking about themselves.  I totally get that.  If I were in their shoes, I’m sure I would have thought to myself, “I’m going to get tested.  I better make sure this is not going to happen to me.” One of the members of my extended family did find a very high indicator.  I get it, I get why.  I guess I may have had an unrealistic expectation around my extended family and how they would react.  That took a little bit of an adjustment for me. Joe:                 Yes, so thank you for your honesty, Matt, because it’s such a hard topic to talk about, but I think it’s very necessary because I think people need to hear this stuff.  The more people I talk to, I find this over and over again, that this happens to people.  These patterns come up, time and time again, you know? Matt:                Yes, you’re right.  Although, we can rationalize it, like I just did, I think, Joe, that it’s fair to say, when it actually happens, it’s a little bit more emotional than the way I just described.  Certainly, I did, I don’t think I acted terribly well in the moment to somebody that wanted to go and find out whether they may have had an indicator rather than asking me about how I was going.  I think I probably overreacted a bit.  I think it’s fairly human to do that, because the fact that we’ve got it. Joe:                 Yes, sorry.  I think it’s really great that you processed a lot of this negative stuff and moved on.  I really want to go back to your friends for a second.  I think it’s incredibly encouraging that you found what you referred to as a refreshed group of friends.  In terms of friends, because that would be different from your extended family, I want to try to understand what your perspective is because I went through it more recently.  Who is going to stay with you through cancer? To me, still, it’s pretty painful.  I don’t understand why the people that I expected to be there for me, why they pretty much just dropped out completely or just pretty much disappeared.  When I really expected them to be there.  What sort of process did you go through to think about that?  Are there any explanations that you found, yourself? Matt:                Yes, look, I do, I have two things that helped me rationalize and understand why some of my previous friends didn’t come through the whole journey.  I think the first thing, Joe, is when you get diagnosed with cancer, some people find it extremely hard to properly understand how long the journey is going to be.  They perhaps think it’s like you’re going in to get some surgery done and then a week or two’s time, you’re going to be okay.  Of course, you and I both know that that’s not the case.  The first thing I’d say is that some people can’t understand the length of the journey. We’re going through a five-year journey and sometimes more.  Since they don’t understand that, they drop away.  They literally go, “I don’t know what to do?  I’ve been there to the hospital, I’ve talked to him, and I don’t really know what to do.  Do I come back and talk about the same thing?” I think that’s kind of one reason.  I think the second reason is that some people just aren’t good with illnesses.  One case, I remember, in my own set of previous friends, they’re not good with illnesses, they think illness is a little bit of a weakness.  Someone’s just giving the cancer illness too much time.  They think, why give something like that so much of your time and effort. Of course, they don’t realise that’s entirely what cancer is going to do, it’s going to take up just about every moment of your waking life, right?  For quite a while.  They don’t get that.  It’s almost like they think it’s the flu, like, get on with it.  I think that’s probably a male thing, Joe, I’m not sure it’s a female thing.  I’ve got female friends.  I think it was more my male friends who were a little bit wanting to see me come out the other end more quickly and less time talking about cancer than I did. Joe:                 Yes, I think you’re absolutely right, I think it’s that different modality of cancer.  Even if I take just the nine weeks of chemotherapy that I went through, my entire paradigm had shifted.  I became an entirely different person.  For them, it was just business as usual. Matt:                Yes, I think you’re right, Joe.  We start changing the way we’re interacting with our illness and they don’t because they don’t understand that.  They’ve observing it, but they don’t really get it.  I think you make a great point there. Joe:                 Yes, Matt.  What is it that’s different about man facing cancer?  Do we have different needs?  Do we express things differently? Matt:                I think so.  I’ll give you two reasons for that.  I think the first thing is that generally speaking, we, as men, don’t tend to ask other people for help as much as our female friends do.  What happens, I think, a little bit, is, to be brutally honest, we don’t address things that we should do, we don’t ask for help, so things get a little worse than they need to be.  Again, the example, in my case, I had a bad reaction to one of the general anaesthetics.   I had three operations and I got no word of whether it was a ratio to gas or whatever it was, and I ended up in ICU.  I wasn’t really helping myself terribly much. I wasn’t being a very nice patient, to be honest.  I wasn’t communicating properly with the nurses and I wasn’t trying to help myself, by asking for help.  That just made, when I look back on it, it was a silly thing to do, it made my stay in ICU a lot longer than it needed to be, and I probably had some ramifications of that.  If I had been a little bit more sensible and asked for help, I probably wouldn’t have had some of the other problems that I had post to the operation.  I think that’s the first thing, we need to ask for your help a bit more than we naturally do.  I think the second thing is the expressing. I think you ask a very good question there.  I think as men we tend to express things in terms of a logical, if you like, way of expressing something, rather than the emotional way of expressing something.  We tend to say, here’s my problem, what do you guys thing?  Rather than, here’s my problem, this is how I’m feeling about it, what do you guys think?  Because we don’t kind of talk about our feelings as much, we tend to get back a very logical response, “Well, have you tried this?  Have you tried that?  Have you tried that?  Why aren’t you doing this?” Of course, some of those things mightn’t be a terribly good idea, given how we’re feeling at the moment. I’ll give you a simple example, in my particular case, I was very sick after one of the surgeries I had.  Someone that said, Matt, how are you going today?  I said, “Well, I’d love to go for a cup of coffee, but I can’t, have you got any other suggestions?” That was a bit silly of me, I should have probably said, “I’d love to go for a cup of coffee, but I feel sick.  I’m going to throw up if I have a cup of coffee, do you mind if we go and just have a wander around the garden and talk about something else?” I should have said that, if I had said that, then the person that was there in the room at the time would have gone, “Well, I understand the way you’re feeling, that’s alright, how about we do this?” Yes, I think you made a great point, I think we probably need to explain a little bit more about how we’re feeling, the emotional side of things, and try to ask for more help rather than try to do it ourselves. Joe:                 Yes, I completely agree with you because as men, we tend to want things to make sense.  When it comes to cancer, a lot of things just simply don’t align.  A lot of them simply don’t make sense. Matt:                Yes, you’re right, particularly in terms of the medical profession.  I think one of the biggest learnings I had was to spend the time in waiting rooms, actually reading up about procedures and what can be some of the side-effects of the procedures and what some of the frequently asked questions are about the procedures.  That really did help me to then interact with the medical profession in a way that enable them to give me a much better answer.  I think what happens is that they’re so busy that they tend to answer questions in a very short way because they’ve got patients waiting, and all of that sort of thing. I noticed when I said, “Well, actually, I’ve read this study and it says this, and I’d like to ask you what your view is on that and how I can stop having that problem later on in life.” They would then reset and go, “Okay, this guy actually has some background, I’m going to give him a much better answer.” That was, of course, much better for me. Joe:                 Absolutely.  It’s better to ask informed questions when you know what’s going on. Matt:                Exactly. Joe:                 Also, Matt, I think that also it’s very important for us men to take a step back a little bit, because I feel that quite often we want to be in control of things, we want to be in charge, we want to know exactly what’s going on.  Quite often, that’s not really what happens with cancer, sometimes we have to let things take its course a little bit. Matt:                You’re right, Joe.  As blokes, we find that pretty hard to do.  We’re wired a bit to try to at least take control, whether we can or not is a different matter but we try to and you’re right, there are a lot of things in that journey in cancer where you can’t take control, it’s going to take as long as it’s going to take, I remember, Joe, saying that to myself a few times, “Matt, there’s nothing you can do to speed this up, let it go, let it go for as long as it’s going to go.  Try to learn as much as you can about this while you’re waiting.  Just try not to do their job for them.” I remember being quite pointed with myself just to stop doing that. Joe:                 That makes so much sense.  Matt, I know that your daughter was also diagnosed with cancer, that is absolutely the worst thing that I can imagine.  It’s crazy, but also understand that all of these crazy events have brought your family together.  How did that come about?  What is your advice to someone about bringing in your family together on this cancer adventure? Matt:                Great question, yes.  Our daughter was diagnosed a week after me, so we just had one of those perfect storms that happens sometimes in life.  The that brought us together was, because I was one week ahead of, and it doesn’t sound a lot of time, but you and I both know that in that one week, you’re really getting started.  You’re on the phone to people, you’ve been to medical appointments, you’ve got tests done, you’ve done quite a bit in that first week because you have to.  What happened to us, Joe, was that because I’d had that experience, I had already found quite a few people who had been through the type of cancer I had. I got them to come and talk to me, and in some cases talk also to my wife, we started to be able to understand how that was going to affect the family, because we could hear their stories.  Some of those stories were great, by the way, so it was about how we’re going to avoid some of the problems that other families had.  Some of them were really good stories about how, for example, one family we heard about had some rules that they were not going to use highly emotive language when they were talking about the cancer.  They were going to take five and if they couldn’t talk about their feelings in a constructive manner in the family, they were literally not going to say anything. We found those little tips to be extremely useful, because we could start to say, “Well, look, why don’t we do that in our family?  Let’s have that rule.  That sounds like a great rule.  Why don’t we do that?  We’re going to go away this weekend, we’re going to forget about cancer for a weekend.” We did a whole stack of things that we’d learned from other families had been useful, that would work in our case.  That helped a lot to deal with my cancer, but also our daughter’s cancer.  She was obviously an awful lot younger, obviously.  She was 17, so she was quite young.  That brought its own challenges and we really needed to speak to some people in their family who had someone with cancer at that age.  I think really, Joe, that was a very big learning, was to educate ourselves by talking to others who had been there before. Joe:                 Yes, that’s the biggest thing, isn’t it?  How did you find those other families to talk to and find those rules, some of them, that you could incorporate into your life? Matt:                Well, the first thing we did, was we went out our extended family.  My family and my wife’s family and we said, “Hey, this is happening to us, you’re going to need to give us a little bit of flexibility in terms of what we’ve committed to do?” Like, we won’t be going to dinner at this date, we’re not doing this birthday party and all sorts of things we had to decommit on because now we really had to focus on this.  Of course, it’s a bit like six degrees of separation.  Some of our extended families came back and said, “Actually, I know somebody, would you like to talk to them?” Of course, we said yes, can you put them in touch.  We also got quite a number of people from my GP and my surgeon and from our daughter’s surgeon. They sent out, we were quite lucky, quite a number of patients who were willing to talk about their experiences.  They didn’t know us, but they were very kind to take a phone call and we could ask them questions and they’d talk to us about what they did in their families.  Of course, there’s cancer counsel, and they have a number of ways of connecting families in who are either experiencing cancer themselves or caring for someone with cancer.  They’ll put you in touch with these people and you can ask them questions.  We actually found we had a very great number of people we could talk with.  We did a lot of that in that very first week of being diagnosed. Joe:                 That’s fantastic, Matt.  You really tackled it early.  I love your concept of little C.  Can you talk about what that is and how that’s helped you tackled cancer? Matt:                Little C, Joe, came about because in a waiting room, one evening, I had an iPad and I started saying, what am I worried about?  I just started writing, what am I worried about?  I just dumped a whole stack of issues and questions and anxieties onto this page in my iPad.  Then I went back, and I looked at that and I went, “My goodness, cancer itself is actually not the biggest worry that I’ve got at the moment.  My biggest worry is what happens if I don’t come out the other end?  What happens if this is it for me?” That was a much bigger issue than dealing with cancer. Then the second biggest issue, again, more important than cancer, what was going to happen to my family?  How was my potential demise, not to put too fine a point on it, what was going to happen to me?  Have I got my affairs in order?  Then I came up with this idea, that I’m going to call it little C, from the perspective that there are much bigger issues that I need to address at the same time, and I need to get that square around my head, I’m not going to dump that on people.  I’m going to get my own thoughts together on what’s going to happen to me if I die. I found that by putting it in perspective with those bigger issues, that it became the little C.  Now, that didn’t mean that I didn’t think it wasn’t important.  As I say, it’s very much in parallel, I was giving time to what was going to happen to me if I did die, and they said, “Sorry, we’ve tried everything and you’re not going to make it out the end” , then I knew how I was going to react to that and I had my affairs in order.  In parallel, I knew I was still going as fast as I could to get to all the appointments and get the bookings done on the tests and get myself into hospital and get myself fit and all that sort of thing.  It was going on in parallel, but it did mean that cancer itself took a little bit of a smaller sort of priority over some pretty larger questions. Joe:                 That’s fantastic because it’s such a positive reframe.  It really puts cancer in its place. Matt:                That’s right, it is a reframe, I’ve never thought of that.  You’re right, Joe, it is a reframe, yes. Joe:                 I don’t know about you, but I have a lot of advice to share with the old me who was diagnosed with cancer and going through treatment, I really had no clue about what was going on.  Is there anything that you could have done differently in retrospect?  I know there’s no such thing as hindsight, but if you had that chance, would you have done anything differently to make it easier for yourself? Matt:                Yes, I would have, for sure.  The first thing is, I wouldn’t have kept working.  At the time, we had a mortgage and kids in school and it was a pretty tough time, but I do remember after one of the operations, I think I might have been out of hospital one or two days.  It was a very short period of time at home resting, then I flew down to Adelaide for a day’s work, for our business.  I was a mess that day.  I think I slept the entire way down in taxis, trains, planes.  I just was slept.  When I got there, I wasn’t on my game and coming back, I did the same thing.  Then I had physical ramifications the next day of just pushing myself too hard.  I think the first thing I’d do is find a way of stopping work for a bit, not permanently, but dropping back to part-time or something or other. Running your own business, it’s actually a lot harder to do that than it looks, because you’ve got to bring the business in, you’ve got to deliver the business, you’ve got to build the business.  You’re doing it all yourself.  Now, we’ve got staff, but you’ve still got to run the ship.  My silliness was to try to keep doing that rather than just say, “Do you know what guys?  This week, forget about it, I’m not here.  I won’t be able to do a thing.  I’m not picking up the phone, I’m not doing my emails, I’m just doing nothing.  I’ve just got to go and get better.” It would have been better for me to do that the three times that I went to hospital.  That was a mistake.  I shouldn’t have done that. I think the second thing, Joe, that I’ve learnt is that the ramifications of some of the treatment are not to be underplayed either.  I thought I was reasonably fit and I had come out the end with a smaller number of ramifications on my health than I did.  Therefore, my recuperation was a lot longer than what I thought.  Mentally and physically, I took four years out of the five years in my particular case before I actually started feeling at all well, to be honest.  To be brutally honest, I did not feel well mentally or physically for four years.  That became a real drag, Joe.  It was a drag on me, it was a drag on my family, on the business, because I just wasn’t feeling well.  I think that was a mistake. I looked back over some of my notes and people were talking, that mental fog, for example.  Joe, you remember this, I’m sure.  That mental fog, that took a long time before that dissipated.  Then I had another procedure and I’d get it back again for a period of months.  I think I was a bit silly in thinking I would be coming out the end of the mental and physical implications of these treatments fairly quickly.  You don’t know until you’ve done it.  I would have been much wiser if I had gone, “I don’t know, I’ll see how I feel, then I’ll plan my way forward.” I didn’t do that, and it was stupid, you know? Joe:                 Of course, you sometimes feel like you just want to break on through and sometimes that may not be the best way to go. Matt:                Yes, that’s right, exactly right.  That’s well put, Joe. Joe:                 Matt, what are the top three things that helped you deal with cancer on a daily basis, physically, mentally, emotionally?  What comes to mind? Matt:                A great question.  Let’s take all of those three things.  Physically, I was very fit before the first of the three operations I had.  I’m very glad I did that.  In fact, one of the guys who I’m currently talking with through Cancer Connect, as a peer support person, I did make a big point of this, and it was interesting that the person I was speaking with said, “Well, as a matter of fact, I don’t think I’m that fit.  Maybe I do need to spend a lot more time getting fit, I don’t know.” I’ll tell you, I thought I was super fit, and I struggled getting through three operations in a period of 12 months, it just knocked me about.  I think getting fit physically is definitely one of the top three things. I think mentally, and it may not suit everyone, Joe, but certainly my case, I needed to get real very quickly in my head about what this thing was all about.  I didn’t paper over it, I didn’t say, “It’ll be fine.  I’m sure the medicals, they know what they’re doing.  The hospitals are good, the treatments are proven.” I didn’t say that to myself.  I went, “Okay, I’m going to find a stack of problems in here.  I need to be realistic about this, it’s going to be a difficult process. I need to get myself mentally ready to wrestle with this process and interact with it and make sure that I drive an outcome out of this that’s good.” I didn’t let it happen to me, I guess that’s the way, Joe, that I’m trying to express.  That I tried to get into the situation and drive it.  I think that helped a lot mentally.  It wasn’t happening to me, as opposed to me managing it.  If that makes sense? Joe:                 Yes. Matt:                I think the third area is around financially, yes, that’s a great question.  We had income protection, when I say we, the business and myself, so on the days where I just couldn’t work, I just couldn’t get out of bed and just mentally not there or physically not there, I had income coming in.  What I don’t think I did that well, which I’d probably change, if it ever happened to me, and touch wood it won’t.  That is that I needed to get my head into the space of, okay, I’m going to go backwards financially.  We’re going to owe more money at the end of this than we did.  Okay. There’s nothing I can do about that.  I can’t be superman and try to work and do this thing at the same time.  I think if I released some of the pressure off me to keep some of the financial trendline going, so that we’re still making our savings target and still putting money towards that and doing those things.  I think if I’d been a little bit more realistic about not trying to do that, and just accepted the financial consequences for a period of time, I think that would have been a lot better.  It did cause some issues that were just unnecessary, in terms of clashes of dates, you know?  I can’t go into hospital that week because I’m going to be in New Zealand, so I’m going to do it the week after.  Stupid things like that.  I’ve been getting my head around, we’re going to go backwards.  I’m not going to be put so much pressure on me, let’s get this thing done at the optimum time.  Let’s not put it off, let’s go.  I think that would have been a better way of going, actually. Joe:                 Yes, for sure, Matt.  I think one of the things that keeps coming through for me from what you’re saying, and I think that’s true for all of us guys, is that we just put so much pressure on ourselves to be this or that and it just takes us back, really.  It’s not helpful. Matt:                You’re right.  It causes issues physically, emotionally, and financially that are unnecessary.  You’re right, you made a great point. Joe:                 Yes, Matt.  Can you please talk about what Cancer Connect is?  I know you’re doing some fantastic work around that.  How does it work and why did you get involved? Matt:                How does it work?  It’s one-on-one peer support, but it has a very important aspect of it.  That is that only first names are used, and we don’t share our phone numbers or anything about where we live.  Now, why that’s important is it enables two strangers to just talk about the facts, without worrying about anything.  I’m just Matt.  They don’t know who I am, where I live, what my phone number is, and I can just say – because they’re not going to ever work out who I am.  This is my experience, boots and all, this is what happened to me, and take from this experience whatever you can in terms of your own situation.  It enables a great deal of honesty. I think that’s why it works.  To answer the second part of your question, Joe, why I got involved, it’s because it’s there.  It’s there.  I came across it, as you know me, because it was one of the organizations that I turned to in those early days of educating ourselves.  I thought, well, if they’ve got an opportunity there and I can help someone with my experience, then I’ll do it because it’s there. Joe:                 Absolutely, and it’s one of those things that I only found out about it after the fact.  I found a brochure somewhere and I went like, “Why didn’t I know about this when I was going through treatment?” Matt:                Yes, you know, in Australia, with only one exception, which is Darwin at the moment, and I’m sure the territory up there is working hard to address is, there are a lot of resources available in each of our capital cities.  We’re actually very blessed that way.  Most of the population has got a huge amount of state and federal help that they can get for very little costs, if not no cost at all. Joe:                 Yes, you’re spot on, Matt.  I think there’s absolutely nothing like hearing about cancer experience from someone who’s been there, from someone who went exactly through what you’re going through, who’s been through this journey.  I know I spent a lot of time on forums online and I think that’s a good way to go, because it really gives you perspective of people who’ve been down that road before, right? Matt:                Yes, exactly right. Joe:                 Matt, I know that one thing that comes up for me and I think everyone going through cancer is the fear of it coming back.  Did that happen to you?  If so, what would you recommend to someone in terms of dealing with it in a better way? Matt:                This is a really good question.  If you’d asked me that question a month ago, I would have given you a different answer than the one I’m going to give you tonight.  Actually, in the last 24 hours, I’m starting to have some symptoms that I had five years ago.  Now, I know they can’t be related to the same thing because I had that taken out of me.  I know that that’s not in my body anymore, that particular cancer, but because they’re the same symptoms, my emotional reaction is quite hard to manage. It’s almost like my heart at the moment is overriding my head and I’ve already been to see my GP today and had a bit of a conversation about, let’s see what we can do here, just to allay some fears that are starting to come back.  It’s a big issue and I’ve noticed talking with others, that you don’t really ever get over this, you’re kind of on the watch, if I can call it that, forever.  You’re looking at the same symptoms, you’re thinking about what could be happening, you can’t turn that channel off.  It really comes down to, Joe, what can I do to manage this little emotional channel that’s going off all the time?  I certainly have found it very good to take up a particular type of sport. Now, everybody’s got their preferences, but what I’m getting at is, you need to choose a sport that is a very mental sport as well as a physical sport because you’ve got to stop the thinking for a little bit.  You’ve got to give your mind a little bit of a break.  Now, you can do that in different ways, some people tell me they can do that with meditation.  They can actually turn their heads off and not have this emotional reaction when they’re meditating, great.  For some reason, I can’t do that, my brain just keeps going, I can’t stop it.  I find that this particular sport that I took up five years ago, which is surfing, tends to be very good for us blokes, because you can’t surf and think about something else at the same time. You literally can’t.  It’s a bit like soccer, I’ve heard other blokes say, that’s interesting, it’s the same with soccer, you can’t play soccer and think about something else because you’re going to miss the ball or whatever.  I think my short answer to you is, you’re right, Joe, it’s a big issue, it’s a lot bigger than it looks and that we need to find this bloke something to do to turn off that emotional channel for a little bit and give ourselves a mental break from it. Joe:                 Absolutely.  Do you find that something like doing things like Cancer Connect, where you’re doing something that is almost in a way bigger than yourself, do you find that that helps you, as well? Matt:                That’s a great question.  Personally, I find it very rewarding to talk with someone who is full of questions and sometimes, talking it out can be a really good thing, as we often don’t do that, as you and I have been talking about already.  I find it very rewarding to just listen and go, yes, that sounds right, that sounds par for the course.  Just that thing where somebody feels like they’re being listened to and I’m not providing advice because that’s not what we do at Cancer Connect.  I also find a nice to be able to say to someone, if I think you’re in danger to yourself at the moment, I’m going to strongly recommend you go and get some help, because it’s not something to be trivialized. I find that quite useful and just on occasion last week, not through Cancer Counsel, but another forum, I actually did take action on behalf of someone, I said, look, I just don’t think you’re coping and I think you need to talk to someone, I’m going to get someone to ring you.  You can make your decision on whether you’re going to want to take that call or not.  I found that was just a really rewarding thing to be able to do. Joe:                 Good on you, Matt.  That’s such a fantastic thing to do.  I know that you have your own business with your wife and you mentioned that it was a challenge to keep it going.  What was it like and how did it all work out?  What did you learn along the way? Matt:                Great question.  The first thing I noticed was not to tell people that I had it.  I noticed that the dynamic you get between yourself and a client when you divulge that you’re going through cancer is not what you expect.  I get it.  I totally get it from their perspective.  They need a service provided to them, they’ve used us before, they’ve got a very good outcome and they want the same outcome again.  They’re got a short period of time and there you are saying, “Look, as a matter of fact, I can’t do that today because I’m going into hospital.” Why are you going into hospital?  “Well, as a matter of fact, I’ve got cancer.” Then there’s this complete silence, Joe. I learnt not to talk about it with clients, which is a bit unusual for me, I do like being open and transparent.  I just go and that’s not a good idea, I just simply said I wasn’t available.  The second thing was, we did need to get a lot more help in the business because I just wasn’t able to do what I normally did.  That cost us money and other bits and pieces.  It was a brutal reality.  We’re just not going to get through this unless we get some more help in here, that might mean that we don’t make as much profit, but so be it.  At least we’ll continue out the other end.  I think the third thing is, that my wife and I put in place rules about what we’re not going to talk about over dinner. One of those things was actually me saying, “I don’t want to talk about cancer over dinner” and my wife would say, “I don’t want to talk about business over dinner.” We were not having very much to talk about at some points.  What I’m getting at is, she wanted to talk about cancer and I wanted to talk about the business.  We had a bit of a tense time there at the start.  Well, how are we going to do this?  I understand you want to talk about cancer. When are we going to do that?  Vice versa with me wanting to talk about the business.  We found ways of doing that with morning walks and getting coffees and things like that.  Look, it’s a difficult thing, there are may more positives than negatives about working with your wife in the business, I think.  That’s when business is business as usual.  When you’re also dealing with cancer and you’ve got a business, yes, it puts a lot of extra stress on things. Joe:                 Yes, I can imagine.  I know, Matt, you do a lot of work around coaching and to enable people to get to where they want to be in terms of their success.  Has cancer changed your perspective on that?  Is your approach now different? Matt:                That’s a great question.  The answer is yes, but for an unusual reason.  As a professional workplace coach, we are, and I am, driven very much to get and outcome on behalf of our client, we’re there to support them in order to achieve their goals and the way they want them and, in the time,-frame they want.  Of course, sometimes, Joe, you know, in the process of supporting them, they didn’t do what they said they were going to do, or they didn’t do it in the time-frame, or sometimes they even changed their goals radically.  I think what my experience of coming through cancer has allowed me to do is go, alright, that’s alright, that’s okay, we’re human and sometimes what we set out to do is not what we’re ultimately going to do, or we’re not going to do it that particular way, or we’re not going to do it in that particular time-frame. That is okay.  I’ve noticed that that’s a little counter-intuitive and some of my coachees are doing, “Well, that’s very refreshing, that’s really great.” Other times, my coachees have said, “Well, that’s weird.  Aren’t you supposed to continue keeping me up and making me accountable for my actions and so forth.” I was saying, well, actually, if you want to change your direction, and you want to change your timeframe, you want to change your goal, you want to change what you’re doing, that’s perfectly okay for me, my job, as your coach, is to support you. It’s actually helped me a lot to reflect back on those times through cancer and the missteps that I made and the delays and all that sort of stuff, because now I’m able to apply it and it seems to actually help my coachees quite a bit. Joe:                 Yes, that’s fantastic.  That’s really a completely different perspective. Matt:                Yes, it has, indeed it has. Joe:                 Matt, I know for me, cancer has really forced me to completely change my priority.  Probably forced is not the right word.  I chose to have completely different priorities in life, well, not completely different, but the way I look at life is definitely now different.  Did you go through a similar experience? Matt:                I did.  I did.  I’m glad you’re asking that question because I want to say that before cancer, for me, the concept of work/life balance is just something you said in order to get a tick on the box, to say that you were aware of it.  I remember my GP every year going, how is it going with your work/life balance?  Yes, I’m going really well, this is what I’m doing.  I was paying lip-service to that, Joe, I must say.  Absolute lip-service to it.  I wasn’t taking it serious at all.  As soon as I got sick and had to deal with some of the implications of the illness, I started to get serious real fast about things like physical health and spending proper time each week maintaining my fitness. Not just when I could fit it in, I was actually fitting my work-life around making sure I was physically fit.  I really turned it around.  The same thing with my mental health.  On those days when I had that fog, and I remember once, Joe, and maybe you had a similar experience, I was in a meeting with a client and we were adding up numbers to do with my proposal, or our proposal and looking for ways to get agreement on price, you know?  I was adding two numbers together going, “What?  That doesn’t even add up.” I just totally lost the ability to add two numbers together.  That’s a mental health problem. That’s a real-life issue.  I do the same around that now, I actually never deprioritize the time that I need to ensure that my mental health is optimized.  I’ve got a little phrase that one of my coachees gave me the other day, which I thought was really very instructive.  She called it: De-speeding.  In other words, take the speed and the pace out of what I’m doing, so that I maintain optimal mental and physical health.  I think that’s a really beautiful little word.  It encapsulates what I’ve been doing.  I’ve bene de-speeding.  I actually don’t try to do as much as I used to do.  That’s had some pretty wide-ranging implications, you know?  I’ve decided there are certain types of clients that I don’t want to serve. I don’t want to have as my clients and I’ve said no and turned away business.  That’s actually been a fantastic thing for my physical and mental health, because I’m under less stress and I have more time to maintain these optimal levels that I’m talking about.  The same thing with business partnerships.  I’ve decided there are certain types of partnerships that were just destructive.  There wasn’t a benefit in them.  We just stopped those partnerships, we just terminated them.  That was a very good thing to do.  To answer your question, prioritizing physical and mental health has now become an actual thing, rather than we just talking about it. Joe:                 Yes.  You almost eliminate things by nature. Matt:                Yes, exactly, right, Joe. Joe:                 Matt, recently, I heard Brendan Beshad, who’s my favourite expert on self-improvement, I heard him talk about the perfect day and that most people don’t really know what it looks like for them.  They never really experience it.  You know what?  I’ve had so many perfect days since cancer because I started appreciating everything that I took for granted.  Every day.  I was actually conscious about how I was designing my day.  What’s your take on that? Matt:                I think you’re right.  In fact, just listening to you then, I can think of a couple of examples today where I just paused and said a silent, “How grateful am I?” To myself, about what’s happening.  I’m much more aware of the good things that are happening, and I want to spend a little bit of time during my day actually celebrating that and going, “That was great.  That was really good.  As opposed to, oh no, look at my to-do list that’s three pages’ long.  I think you make a great point.  I certainly caught myself doing that. Joe:                 Matt, if you had a minute with someone who recently got diagnosed with cancer, what would you tell them? Matt:                I think I’d tell them two things, first of all, go and educate yourself as best as you possibly can and spend as much time as you can understanding what treatment options you’ve got, what the implications of them are, how long it’s going to take to recuperate and ask as many questions as you possibly can with the medical people you’re interacting with, to ensure that you know what you’re about to do, and that you can actually manage your own situation from a logical perspective.  The second thing I’d say is to do the same thing with your emotions.  Work out what types of emotions you are likely to feel by talking to people who have been through it, is it fear?  Fear of what? Is it going to be the fear of the unknown?  I try to really be brutal about confronting the emotions that you’re feeling.  Here’s my thing and if you think you need help, you should go and get help to manage your own emotions.  The system, or the process, if you like, you’re going to go through, medically, is not going to help you at all in terms of self-management.  You’re going to have to look out for yourself and be ready to tell people how you feel and most important, if you just don’t think you’re doing it, you’re not managing yourself very well, then to stop and go, “Okay, I need some help, someone give me a phone number, I’m making a phone call right now. I’m going to talk to someone about getting some help right away.  Someone gives me a phone number.” You’re going to have to do that because the process you’re going to go through is not really designed to help you manage yourself.  Does that make sense? Joe:                 Absolutely.  That’s great advice, Matt.  I really want to thank you for your time and for your honesty, because that’s not easy, and for being able to articulate this incredible complexity that comes with cancer.  Thank you so much, Matt.  I really appreciate it. Matt:                It’s been a great pleasure and, Joe, keep up the good work, you’re going a really good job just bringing this stuff to people’s consciousness.  Well done, you keep doing that. Joe:      Thanks, Matt.  I will.

In this episode, I’m talking to Rochelle who is amazing at articulating her cancer adventure in a way that’s universal. So even if your experience is different, you can still find so much that you can relate to! In this episode, we cover: The bombshell of diagnosis and the alien reality of cancer Why trust in your specialist is critical Why some people are the rock of support (and why some people drop off) Ups and downs of chemotherapy The importance of connecting cancer experience Emotional ebbs and flows during cancer The lost art of listening Links Cancer Connect Cancer Council Victoria ThinkHatch Marketing & Communications Full Transcript Joe:                 Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Right now, you’re going to hear from Rochelle, who is a cancer survivor and what’s really amazing about Rochelle is that she can articulate what this cancer adventure has been like for her in a way that’s universal.  Even if your experience is different, you can still find so much that you can relate to.  I really hope that we can find an hour or two with Rochelle somewhere down the line because there’s just so much to unwrap.  For now, enjoy.  Rochelle, thank you so much for doing this.  I’ve been really looking forward to it.  First of all, tell me, how did you react when you found out that you had cancer? Rochelle:         Obviously, there was a huge element of shock.  My symptoms were nothing more than a shallow cough, a reasonable amount of weight loss and a little bit of exhaustion.  Given that I had a new-born son, weight loss during breastfeeding was very normal to me, exhaustion is obviously part of the new-born package and I am prone to coughing and throaty-type illness, generally speaking.  I don’t get sick very often but if ever do, it’s normally a cough. I really didn’t notice.  I think the shock of not actually feeling particularly unwell and then discovering, as a gross optimist, I think I told you earlier that I’m terrible optimistic, discovering something as significant and severe as cancer, as a diagnosis was shocking.  Almost a little bit unbelievable. Joe:                 When you say unbelievable, how long did this feeling last for?  Did it change? Rochelle:         My father is a medic.  He quickly diagnosed me.  I often joke that he thinks he’s like a diagnostician, like Dr.  House from the TV show.  I think he semi-diagnosed me and sent me to a doctor and as soon as I saw her, she sent me for a CT scan and shortly after that, a biopsy.  I knew very quickly that something was going on, but no one actually had used the C-word, so I didn’t actually understand the severity of what I was being tested for or what was suspect.  I think when she then called me in on the morning of my birthday. Joe:                 Oh no! Rochelle:         Yes, 8:30am, to say, “Listen, Rachelle, you’ve got Hodgkin’s lymphoma.” That shock was probably the result of just really not having any understanding that that’s what was potentially on the cards.  As soon as I saw the oncologist the next day, and he told me my odds and told me my treatment plan, shock really dissolved almost instantly into, right, action stations, let’s crack on, we’ve just got to get better.  The shock didn’t last very long for me.  I think it possibly lasted a little bit longer for my partner and my family.  I transitioned very quickly into, I just need to get through this. Joe:                 Yes, good on you, because you’re completely unprepared when it happens, right? Rochelle:         Completely unprepared.  Also, I’ve not really been to hospital, I’ve not really ever been unwell in any significant way.  I’ve never had much involvement with the medical profession.  Part of the shock is not only, oh my goodness, I have cancer, which is surely something that happens to other people.  Part of the discomfort initially is also, and I’m being scanned and I’m in a hospital and I’ve never had a biopsy before and I’m seeing doctors that I don’t know, who are pretty much taking control of my life.  That’s comfortable and very unfamiliar.  Yes, you’re correct. Joe:                 Yes, it sounds like it was incredibly overwhelming.  How did you transition from that moment of shock to go into, as you say, action mode?  What sort of things did you do and how did you plan your life around it? Rochelle:         I think I transitioned from shock into action mode an enormous amount due to my character.  The fact that I am quite positive, I feel very comfortable taking control, generally speaking, in life.  That was my natural default.  I also think that I chose to completely trust my oncologist and the medical team who were advising me.  I could have decided not to, but he told me my odds, so I was 75 percent going to be fine, 25 percent not.  I was determined to be in the 75.  I didn’t start searching Google and looking online and trying to find answers. I think I just believed.  Later on, I did start to do a bit of my own research, but pretty much trusting in the advice I was being given by my lead oncologist, allowed me to settle into, okay, I assume he knows what he’s doing.  If I just listen to what he says and get through this, then I’ll be fine.  It didn’t serve me to hold onto the panic or the distress.  I luckily avoided anger, so I know a lot of people get very angry and a lot of people have talked to me in the past about: Why me?  Why is this happening to me?  This is so unfair?  I don’t know how I avoided that, but I didn’t experience that.  I did experience that this is very difficult and uncomfortable and later on, sad. Joe:                 Absolutely.  You mentioned trust, that’s such a key component, isn’t it?  I know that when I got diagnosed and I went to see my oncologist, the fact that this was a person that I felt I could trust, I think it was even a conscious decision for me, it really helped me to go right.  This is happening, there’s an action plan, I know what to do and I can trust this person to help me make decisions.  Was this like a conscious decision for you, as well? Rochelle:         Yes, I think it was conscious because it’s quite unnatural to trust an unknown to the level that we are forced to, at that stage of things.  Yes, I think I did decide to trust him.  He was very clear in the way that he explained my diagnosis, my prognosis, my treatment plan.  He wasn’t amazing at accessing me, perhaps, and what mattered to me as a person or as a young mum or any of those types of things.                         He was, in part, sensitive to it, but he was certainly very clear, and I did have my doctor father at home waiting in the wings and backing up what I had been told.  I didn’t feel like I had a choice, to be honest.  I think the most challenging thing for me at the start was that I had to hand over my life and the running of my life and the major decisions in my life to others. That I had to follow suite unless I had a very strong reason otherwise, and I didn’t in this instance.  Yes, the early day challenge for me was once the shock wore off was the relinquishing of control and the letting go and accepting this is how it’s going to be for a period of time until hopefully life goes back to normal. Joe:                 Absolutely.  Was there anything that helped you along the way?  Did you make notes at all?  Did you bring someone to the appointments with your specialist? Rochelle:         Yes, someone told me right at the beginning that aside from chemo-brain making things a little bit foggy, just the emotion and the exhaustion of going through the treatment, means that it’s sometimes hard to remember or to think on the spot.  Also, because I’m not used to seeing doctors, it’s an interesting powerplay or relationship, patient/doctor.  Someone said to me, it’s really important to write your questions that you would like to ask in your next appointment, as even throughout the week. Leading up to go and see him, just drop down the things that you’re feeling you wouldn’t mind asking him and so I went into each appointment with some written questions.  If I had nothing else to ask, at least I referred to those.  Having said that, though, he was really adamant, don’t write everything onto your list of questions if there’s something really disturbing your or uncomfortable or physically difficult.  He was also very clear that there was time in between appointments to phone in.  The doctor had also said to me, people find it very handy to write questions and bring them in, so that’s what I did actually every appointment. Joe:                 Yes, absolutely.  I know that it really helped me because I only started doing it after some time because I realized that every time I walked out of the oncologist’s office, I realized that there were about ten things that I had forgot to ask him.  I started doing it out of necessity almost. Rochelle:         Yes, absolutely.  I think that’s why I got the advice.  It’s only once you leave, you think, I wish I would have asked about this, that, and the other.  Yes, that’s exactly the rationale for it. Joe:                 What about your family, your friends?  How did they react?  Did they support you in a way that you wanted to be supported? Rochelle:         My family was unbelievable.  Steven, my partner, was incredible.  My parents were absolutely phenomenal.  They did a lot for us to help care for our two young boys.  The boys were a blessing because a lot of people say, “My goodness, cancer with two young children.” There’s never really a great time to have cancer but actually in hindsight, the wonderful thing about the boys was whenever anyone looked at me with sad eyes all the time, the boys didn’t, because they understood but only – Harry understood nothing, he was a baby.  Jack was only two and a bit. They may have sensed that something wasn’t quite right, but they were just beautiful little boys.  They just went on being themselves and there was something really, really comforting and refreshing about the fact that in their company, I wasn’t ever needing to react to what might be going on for them.  The innocence of their little smiles and those faces was actually really wonderful.  My family was incredible.  A lot of my parent’s friends were unbelievably supportive and aunties and uncles.  My cousin and his wife were incredible. Just coming and helping and not even asking if they were needed, just making a regular visit that was just so comforting and also, just lovely to be in their company.  Friends of my mum’s and my dad’s cooked constantly.  It was wonderful to be constantly fed.  There were a few dishes that I can’t even make in my own home now without thinking of those people who made them for me all the time.  Some of my friends were just amazing, amazingly supportive, just to be there and to listen and to talk and to send love.  Others also made food, some came and took my son and I out to play each week. Sometimes they just came and sat by my bed when I was feeling pretty crappy from the chemo.  Interestingly, I think we’ve spoken earlier about the fact that it’s not always the people that you necessarily expect.  There were also people who out of nowhere I would never have anticipated were so phenomenally kind without any expectation of acknowledgment or gratitude, just who were there.  Just doing really kind, thoughtful, helpful, and regularly contributing.  Then there were others that we talked earlier about, also, who potentially do some of what they do for a bit of accolade. That’s okay, too.  Different people are motivated by different things.  Yes, I felt unbelievably supported, even though a lot of the time, I kind of just wanted to go inside and just sort it out myself.  There’s a huge amount of support received but there’s an isolating experience to the cancer experience, I think, to some extent, as well. Joe:                 I know that when I was going through this experience and when I had those people in my life who I believe just completely disappeared or just dropped off the radar.  I know that I felt incredibly angry for those chunks of time.  How did you deal with those emotions?  Did anything like that come up? Rochelle:         Yes, I’m the daughter of a psychiatrist and psychologist, so we spend a lot of time understanding why people do the things they do.  I suppose I naturally excuse people for behaving the way that they behave.  It’s to completely understand your experience and that feeling of disappointment, almost, as much as anger.  I think the reality is some people just don’t know how to respond.  They’re not sure what the right thing to do is, they’re not coping necessarily in themselves with the fact that they might even be distressed about the fact that you’re unwell.  That sometimes causes inertia. A lack of action.  I’m so frightened, I don’t know quite what to do, so I’m just going to freeze and do nothing.  In actual fact, it’s almost always better to say, hi, I don’t know what to do but I’m caring than it is just to do nothing.  I think that’s why some people get angry and a bit disappointed because the people who they may expect can step up, sometimes just can’t, then out of the woodwork come these others who you least expected who can just completely nail it and know exactly what the right thing to do is. Joe:                 I also had exactly the same experience where some people are completely natural and giving you the support that you need, and it feels very natural and real and authentic.  Some people, the thing for me that was the worst after completely ignoring the whole thing, were people who would come in and say, “Just let me know how I can help.” That was, for me, infuriating, because I was like, not only you’re just putting this on me, right, because now I have to come up with a way to ask you for a favour. Rochelle:         Yes, that’s I think what I was alluding to before.  It’s not always easy to know the way in which to offer support.  Sometimes just doing and contributing in the best way that you think you can is more of a help than expecting the cancer patient to try and work out exactly the way in which you can assist.  The funny thing on the food front for us was a woman that I’ve known my whole life did a lot of cooking for us, she’s an unbelievable cook, so it was great.  I joked with her one day, as she was visiting, I was feeling really rubbish from chemo.  I wasn’t really in the mood for seeing anyone, but I let her come in because she’s just like an aunty. She said, “Well, tell me what’s going on, how are we on the food front?” I said, “I can’t even hear the word, let alone smell it.” She said, “Okay, let’s just make sure…” and she put the word out, she doesn’t want osso, so don’t make it.  I think it was just because it’s easy to freeze, so I got a lot of the same dishes.  It was only with her that I could joke and laugh.  The humour with which she took it on and directed traffic almost on my behalf for meals to start to be the ones that would suit my pallet, or that would not be osso bucco for a period of time.  I think, yes, I think you’re right.  I think it’s hard to do the knowing. Maybe even asking the carers rather than the person who’s going through cancer.  Do you know what the most helpful thing I could do is?  Also, to some extent, I found it really hard watching the impact of my cancer on the people around me.  When I talk about the people who were incredibly kind and supportive, they weren’t always actually in touch with me.  Some of those people who just incredibly kind and supportive to Steven and to my mum and dad.  They needed support, too.  It was really exhausting.  There were other ways that you can help rather than feeling like you need to really access the patient. Joe:                 It’s crazy, isn’t it, that sometimes your partner, your parents, your family, sometimes they’re more impacted by this even than you are? Rochelle:         Yes, it’s a very hard conversation to have a lot of the time.  There were aspects of what I went through that I thought, aside from the physical symptoms of chemo, it was easier on me than it was on them. Joe:                 Sometimes they get overlooked because they need support, as well.  Do you think they had the support that they needed to be there for you?  I guess all the focus when I was going through treatment, I guess the focus is on me and as much as I love to be the centre of attention, but at the same time, they need help as well.  Do you feel that your partner and your parents, did they have the support that they needed? Rochelle:         I think they supported each other a lot.  I think they also had some significant others in their experience of my cancer, who they would say similar things to what I say.  There were some standout people just were supportive and kind and considerate beyond measure.  Then there were others who perhaps didn’t step up but really had not wherewithal to know what to do. Joe:                 Yes, it becomes a whole community thing, doesn’t it? Rochelle:         Yes. Joe:                 Rachelle, I know that you have your own marketing business and it must have been a real challenge keeping up with all of that, when you were facing cancer.  What was it like and how did it all work out? Rochelle:         It was lucky in a way because I had just had Harry, my second son, I was off work.  The business, because it’s my own, and because a lot of the client service was my own, the business wad wound down to just what the people who work with me could manage.  There wasn’t a huge amount that I was supposed to be involved in at the time.  It’s like I was on enforced maternity leave, really.  I took the time and I didn’t really think about work.  The impact mostly was I possibly didn’t start to build up the client base again as quickly after having Harry, as perhaps I would have. I just gave myself a little more time to get well and recover before I decided to really get back into the full swing of work.  It’s far more complicated for a lot of other people and certainly, people that I’ve spoken to in relation to time off and loss of income and the impact of cancer can be immense for many others.  I was in that little maternity leave zone, so when the cancer treatment phase hit me, it was when I wasn’t working particularly anyway, so it was alright. Joe:                 Yes, that’s good to hear.  Cancer is very tough to deal with mentally, as we both know, because you’re constantly in between treatments and you’re waiting for results and you’re waiting to hear from your specialist.  Did you feel you were angry and frustrated and just overwhelmed, not knowing what to do with it all?  Is there anything that helped you to be more positive? Rochelle:         I think I’m naturally very positive.  Positive probably wasn’t such a problem for me.  I distinctly remember, though, phases almost, of my chemo, so I’m ten years all clear.  Even ten years on, I can almost remember the difference between chemo one, chemo two, chemo three.  It was definitely an experience and I don’t love using the word “journey” in this space, but it sort of was to this extent.  Without any specific training and mindfulness or meditation.  I think I went at times into almost this meditative state.  When I was feeling really knocked about by the chemo, which, as we know, that’s accumulative. The first chemo, I was like, woo, I was still on holidays and I just had a little afternoon nap.  When I’d had my first chemo, I thought, “I am just one of those freak humans.  I’m a superstar.  This is going to be fine.” Then I had the second one and I went, ah, okay.  Then I had the third and I was smashed.  I think the reality check of it’s not as easy the third, fourth, fifth, sixth, seventh time as it is the first time.  Some of it was just lying still for long periods of time, which is super unnatural for me.  Being incapacitated, I couldn’t watch television, I couldn’t read. I went through stages of bright lights and a lot of noise being quite uncomfortable.  Only or specific days after chemo but it meant that there was almost no stimulation that was tolerable.  Then all of the stomach and internal discomfort from poisoning.  It was digging deep into reserves of calm and resilient and patient, that this was hugely uncomfortable and physically distressing, as well as emotionally distressing.  I had to just get through it.  Upon reflection, the only explanation I can give is I did just go into this blank space, where I tried to focus away from the pain, I didn’t panic about the future and I tried not to dwell too much on exactly what was happening to me in relation to the cancer. I just had to let time pass.  Those were possibly the most challenging days and I remember having a couple of really distinctly disturbing, almost uncomfortable – they weren’t hallucinations, I don’t quite know how to describe it, but it was where my mind and my brain was really smashed by the chemo and I wasn’t able to think, and I wasn’t comfortable in my thoughts.  I got through that and it didn’t come back again.  That was probably chemo three.  Then chemo four was alright, I had the physical discomfort, but my mind never went into that place again.  I think it was just from keeping myself calm, and a little bit distracted. Joe:                 How did you do that in terms of your daily practice?  Would you get time for yourself to go for a walk? Rochelle:         I tried to go for walks when I could, just gentle walks.  You know?  Can you imagine it’s like an old person all of a sudden, my body was unable to do a lot of the things that it used to do?  I’m normally very fit and active and healthy, so gentle walks.  Sometimes we got these two fold-out chairs for the garden, which seem like the simplest thing.  Steven, my partner, went and bought them.  Just sitting in one of those with a cushion and just letting a bit of sun shine on my face every so often. We had a big tree in the back garden, we’d just sit under it.  Just being outside, having Harry play around me or just being with one of the boys.  Even if they were just pottering around or he was playing on a play mat.  Just having out with them was really rejuvenating to some extent.  I had conversation, I had people in the house.  I don’t remember being completely isolated to my home, but I also really don’t think I did much else.  I can’t remember any specific major outings. I don’t remember socialising hugely during the time of my treatment.  It was just gentle, enjoying a bit of human contact and mostly just staying calm and quiet.  There was a lot of quiet time.  Much more quiet time than I ever have in my real life nowadays. Joe:                 Absolutely.  Is there anything in hindsight that you would have done differently in terms of how you approached treatment?  The time for rejuvenation, having your own space? Rochelle:         I don’t know if it would have been possible, but I wish I had journaled.  I’m not a regret person, I don’t tend to hold onto regrets, but there is a little part of me that wishes I had written during my treatment, during my cancer experience and throughout the treatment phase.  Partly because I wish I had a bit more clarity around a few things.  Part of the side-effects of being an optimist is you block out very negative experience.  There are parts of what I’ve experienced that I actually genuinely can’t access.  My protective mechanism mush has just shut that down.  I feel a little bit like I could more accurately recall certain aspects of what happened. Also, I think I feel like there would be value in the sharing of it.  I suppose I could just sit down and write upon reflection, which is challenging because it takes me back there and there are days now where I’d rather not have to go dig deep back into what that was all like.  Also, I think it’s a bit clouded by being ten years out the other side.  It’s possibly not as accurate as it would have been.  I wish I would have journaled but I’m not sure what else I really could have done differently.  I think I celebrated the milestones reasonably well. I made my oncologist sign a five-year all-clear certificate that I made for myself, which he thought was hilarious and I only got him to do it because I swore that I’d never use it against him in a court of law.  I took chocolates back to the oncology ward for all of the chemo nurses. Joe:                 Yes, we did the same. Rochelle:         Yes, they were like angles descended from another planet. Joe:                 Yes, absolutely. Rochelle:         That was really weird because I was busting to go in and my Wednesday was my treatment day, so I knew that most of the ones who I had seen, if I came two Wednesdays in a row would largely be there based on their shifts.  Having to go back there two Wednesdays after, I didn’t need to be there anymore, was hell.  I went back and took them chocolates.  I think I loved that I did that still.  It was a really funny and fun half an hour.  I think, no, I managed myself as well as I could have.  I think I showed appreciation for the people who loved me and who I cared about and who cared about me as much as I hopefully could have. I think I still maintained contact with my boys, even when I was feeling rubbish.  I have a little tiny part of me where I look at photos of Harry, particularly, because Jack was already two, but I look at Harry in those few months when I know my treatment was taking place.  There’s just this vague sense of, did I miss out a little bit on that tiny patch of his life?  I don’t dwell on it too much because he’s such a cool kid and we’ve got such a good relationship, it’s fine.  I can’t imagine what else I could have one.  There’s a little part of me that does wish that I’d written that down. Joe:                 One of the things that helped me was for my first cycle of chemo in hospital, I was put into the same room, which is by pure luck, well not pure luck, this was really intervention by the amazing nurses that we had.  Where I was put in with a guy who went through basically the same thing as I did, and he was on his last cycle.  Which was really cool because he was able to guide me through, give me some tips about managing your energy and what to expect.  He was an incident because I actually went to school with him, and that was bizarre.  It was pretty amazing.  It was something that really helped me.  Did you come across someone along your cancer adventure that went through a similar experience and was able to share that with you? Rochelle:         I just have to pick up on the fact that you just said cancer adventure.  Maybe that’s the word instead of journey we all need to start using.  I’m not sure it would go down well with everybody. Joe:                 Like you, I hate the word journey. Rochelle:         Yes, it’s interesting.  People come out of the wood work.  I was contacted by someone who was my parent’s generation who had had Hodgkin’s Lymphoma and she just phoned me out of the blue and said, “I’d heard, and I just want to tell you that I went through it.” She was absolutely lovely.  The interesting thing, I suppose, was she focused quite a lot of what she wanted to tell me on sourcing a good wig for when I lost my hair.  It was interesting because she was lovely and genuinely offering some support, but I couldn’t have cared less about – I have big, long brown curls, so I wasn’t like imaging ever having to go bald. It wasn’t even on my radar.  I couldn’t have cared less.  I thought, I’m sick, and I’ve got cancer, and I need to get better.  I’ll put a head scarf on.  I don’t know, it hadn’t occurred to me.  It was strange in the first instance get help from someone who had had exactly my cancer, who was focusing on an issue that was exactly not my issue.  The flipside of that was when I had finished my treatment, I heard about this service that the Cancer Council offers, called Cancer Connect. That provides specifically the opportunity for people who phone into the Cancer Council to talk to someone who has had a similar cancer diagnosis or experience, or treatment, or is in a similar life stage.  I think I would have loved something like that when I was going through it.  Just to normalise to some extent what’s going on, to talk to someone else who has had what I have.  I didn’t find out about that until after I was better. Joe:                 Probably like most people.  Is that why you got involved with it? Rochelle:         Yes, I found out about it because I picked up a brochure when I was actually waiting to see my oncologist.  I was reading it thinking, “This is brilliant and actually, why didn’t I know?” With my marketing hat on, why the hell didn’t I know and how come this isn’t better promoted to me.  Instantly, jotting down all the ways in which this message could have gotten out to me throughout my treatment.  Then I contacted the cancer counsel to say, “I had never heard about this and these are all the ways in which the message could have gotten to me, and how do I apply?” They listened to me, gave me a little bit of information and then said, “Rochelle, it’s wonderful that you want to volunteer, and you sound like just the right type of person.  However, sweetheart, you’ve just finished your chemo.” They basically wouldn’t accept anyone into the program until 18 months after their last treatment.  Which, at the time, I thought was absurd. Joe:                 Why do you have to wait? Rochelle:         Upon reflection, it’s genius because there’s no way you’re in a position straight after you’ve finished treatment to start supporting others.  There’s a little way to go, I think.  There’s quite a lot that went on for me and for most people.  Once the treatment finishes, then you start to get back into rebuilding your life after cancer, you probably need a little bit of time to focus on yourself and to get that sorted before you start to open your mind and your heart, and your listening capacity to hear others talk about their experience. Joe:                 Yes, it’s interesting that you mention that.  Before we get back to Cancer Connect, in terms of this whole process of putting yourself back together and because this experience changes you, did you feel that you started to look at life in a different way, and also maybe reassess your life before cancer? Rochelle:         Yes, gosh, how long do we have?  I’ll try and pick the key points.  I often describe it as if you’re looking at life through a magnifying glass, and everything that’s really important just gets extra sharp and crystal clear and huge.  Everything that’s not important doesn’t actually make it into the picture.  I don’t think I changed what I thought was important, I think I just sharpened my focus on it and recognized that there was a whole lot of other stuff that didn’t warrant my attention.  I think that was certainly the result of cancer.  I also think it could be the result of moving into middle age. Sometimes I’m like, “Was it my cancer or was it just the fact that I’m older?” I think it’s both and I think it’s definitely partly the cancer.  I think initially I was on an unbelievable high.  Every week away from chemo was a week of awesome.  As I rebuilt my health, because you accumulatively grow stronger and more well in the same way that you accumulatively get more ill from the chemo.  The more I moved aware from chemo treatments, the more I started to exercise and be active and get back into my normal life. At six months, I thought I’m flying, but actually at twelve months, I looked back and went, gosh, at six months you were still barely putting the pieces back together.  I think I started on a real high and then it was only probably four or five months’ later that the actual reality of what had happened hit me.  I actually think that is the first time.  I think it hit me then significantly harder than when I first even found out I was sick. Joe:                 The magnitude of it all? Rochelle:         I think the fact that it happened to me and that I wasn’t looking from above down on myself, thinking, “You’ve just got to get through this, head down, Rach, you can do this, go, go, go”, but more looking down on myself and thinking, “Well, that happened to you, that was really sad and really intense and really challenging.  You did good, girl.” I think the magnitude and the sadness still hits me now, even just telling you.  That was the real turning point.  Then also acceptance and just letting myself feel really sad and really just stressed for the first time about what had happened. Feeling proud of how I’d managed it and grateful that I was lucky enough to be here.  Still, I feel more the sadness and just stressing factors really kicked in.  Probably because I was safely on the other side.  I think when you’re in the middle of the treatment, there’s not time or energy that can be spent addressing some of those emotional stuff.  It’s really just hold yourself together physically because it’s physically very debilitating.  Once I was out the other side, it was like, good, you’re well now, you’re safe. Now… let’s lose it emotionally a little bit about what was going on.  That, to some extent, hit me.  Interestingly, that was also a turning point for being able to look forward.  Straight after I got well, Steven, my other half, was very much, “Right, let’s plan holidays, what can we do next and what’s our future entailing?  Let’s do some five-year visioning.” Really wanted to look to the future.  I absolutely couldn’t.  I didn’t know I couldn’t until he pointed it out to me one day when we were having a conversation.  I was like, of course I can, I love planning for the future.  Then, I realized, no, he’s absolutely right.  I just could appreciate the here and now and get excited about tomorrow.  Planning past that, it was actually just too stressful. I’m not that easily stressed and I’m not naturally anxious, I don’t anticipate the worst.  I just wanted to just stay right here, right now.  Then at that four or five-month point, when I really got upset, I suppose, about what had happened.  I dealt with it and then that triggered this capacity to all of a sudden, plan for the future again and get excited about the longer-term.  Yes, they were probably the two things that changed the most.  It was the sharpening of the focus of what’s important and then the flip, finally, of being able to plan again for the future. Joe:                 Yes, because all of a sudden you realized that every day is a gift, right, and then naturally, as you mentioned, all of your priorities automatically shift and everything that’s not needed just falls by the wayside, doesn’t it? Rochelle:         Yes. Joe:                 Was that the moment where you felt, now, I have the capacity to help others, to be part of Cancer Connect?  How was that experience like?  Was it emotionally rewarding?  Was it draining at the same time?  Would you recommend it to others? Rochelle:         I thought I could join Cancer Connect like three days after my chemo finished, I think, as I mentioned.  They made me wait, which was great.  I think I felt like it was something that I would have appreciated whilst I was going through it and therefore, I should get involved because how could I not want to help others in the same circumstance.  I probably went into it with a very much giving hat on.  What I didn’t necessarily anticipate was how much I would receive from getting involved.  The training, itself, was really incredible. Partly, because it’s very good training and you do a lot of role playing and there’s a lot of active listening skills and just various protocols and guidelines to do with the actual program.  Also, a lot of just interesting interpersonal skills about peer-support over a phone and what helps and what doesn’t help.  I really enjoyed that in terms of the learning.  More than anything, I really enjoyed being in a room full of people in the club.  Which was really phenomenal and that was the bit I probably hadn’t anticipated. I think I mentioned to you earlier, even telling those totally inappropriate cancer jokes in a room full of cancer people.  Well, we laughed at things together but then almost simultaneously crying, but you couldn’t’ do that with anyone else.  It absolutely is one of those things, if you haven’t been through you, I can’t really explain it.  Some of it was also that reality of the value of Cancer Connect was in that training, when you’re talking about the third day after your second chemo.  The people opposite you were going, “Yes.” You haven’t explained it yet, but you don’t have to because they know exactly what you’re talking about. It’s that capacity to talk in shorthand about an experience that was monumental, that would take a lot of explaining to someone else.  It’s quite normalising and reassuring.  Just the characters.  There were lots of wonderful characters in the room.  People were all there for a similar reason.  That attracts a certain type of person, I suppose.  That was really enjoyable.  Just to hear from other people about their experiences, where some of them were so similar to mine, it was like holding a mirror up.  Others were so extraordinarily different, that it was fascinating that we’d been through the same thing, but with a completely different set of circumstances or outcomes. Joe:                 When you were talking to the people on the phone, people who were going through that, what did people want to talk about?  Were there any topics that seem to come up all the time? Rochelle:         I often see that someone’s cancer experience is as different and unique as their life experience.  There’s not really two people who you can categorically say, “It’s just the same.” There are certainly some themes that come up.  A lot of the time, it’s just letting them talk about things like fear, confusion, a need for reassurance, anger, questioning, why did this happen to me?  What am I supposed to do now?  How the hell am I going to get through this?  How am I going to rebuild my life afterwards? Sometimes it’s whatever was going on before the cancer experience comes into the cancer experience, and it hasn’t gone away.  My really annoying mother-in-law is driving me mad.  Okay, but did she drive you mad before?  Yes.  Well, she’s still going to drive you mad now.  Sometimes it’s really specific questions about the treatment.  People want some reassurance around what side-effects did you have?  Can you tell me what happened to you?  I’m not there yet, but I just want to hear from someone who’s been through it.  Largely, it’s listening. I think sometimes just giving them the opportunity to talk about what they’re going through and really listening and just responding with some genuine, “I hear you.  I know.  Oh my goodness.” It’s just enough to normalise what they’re going through and to make them feel like somebody who’s been through it knows what they’re talking about.  You can’t always anticipate what people will ring in about.  Yes, there are some things that feel familiar and you feel equipped as a peer, rather than a professional to provide support on. Joe:                 It’s interesting that you say that.  I’m usually the type of person that if friends tell me about stuff, I’m usually the person that hits them with advice.  Maybe you should do this and do that.  It’s interesting, when I was in hospital for chemo and there was an old friend, we don’t really see each other all that much, but she showed up.  She just listened to me for an hour.  I was just bitching about stuff, I was just going off.  I realized that the tremendous uplifting experience to just being listened to.  Listened to in a proper way, where someone is just there, just present, not really giving you advice or telling you what to do, just listening. Rochelle:         Yes, absolutely.  A lot of what you learn from the Cancer Connect training is less is more, actually, when you’re providing peer support.  Two ears, one mouth, use them in that proportion.  Even more so, really just listen and give them an opportunity to speak and to share in an environment that they feel is safe and supportive.  There are times in the Cancer Connect call, where they ask specifically, tell me about what happened to you, I want to hear you experience.  What did you feel when you went to chemo?  How did you cope when your oncologist wasn’t answering your questions like you wanted him to, or her to? There are times when they specifically are seeking your story and I found interestingly at the start, how much should I share?  I’m out the other side, so she’s only in her first treatment, do I tell her how bad it is by the time she gets to the fifth?  Sometimes there is a sensitivity around if they are asking you direct questions, what’s appropriate in this circumstance to share?  I shall never lie but maybe in the second or third call, I’ll tell you about some of the more challenging symptoms that you’re not necessarily feeling now.  It needs to be support and care and honesty. At the same time, you’re not trying to scare the crap out of them.  There is a huge responsibility to listen and to be honest when direct questions are asked.  I certainly followed the approach of listen far more than I speak, in terms of providing support. Joe:                 I think it’s so amazing that you were doing it and you’re doing that now, because so many folks just need it because they, for one reason or another, do not have the support that they need when they’re going through it. Rochelle:         True.  Well, thank you.  It is good.  You can hear how much I talk.  Imagine me trying to listen. Joe:                 It must be tough. Rochelle:         I’m also quite a good listener.  One of the interesting things that they do with the training is, you have two training sessions at the start and then you have a one-month break and then you do the third session.  It’s a very clever design because some people decide it’s just not for them.  They won’t come to the third session because either they don’t enjoy the experience, or they realize the commitment is not something that they’re prepared to give.  Also, for some, it just brings up too much of their own difficult memories and they might not be ready.  A lot of the early training is also about deciding in yourself if you’re ready to be in a place where you can offer support to others. Joe:                 Yes, that’s fantastic.  Roch, if you had a minute with someone who just recently got diagnosed with cancer, what would you tell them? Rochelle:         I probably would ask them how they’re feeling.  I don’t know if I’d tell them much at all.  I think I’d ask them, yes, do they want to talk about it?  I’d tell them that I’m available if they do want to talk about it.  If not now, then at any time that they feel the need.  If I had to tell them something, I would probably just tell them that it’s really difficult and whatever they’re feeling is okay. Joe:                 Yes, that makes sense, Roch.  I know we spoke about it earlier, as we met at the survivorship event earlier, I saw you’ve obviously been speaking to a lot of specialists and research after that.  In your opinion, did that change that perspective in terms of interacting with someone, someone like you, someone who’s went through this real-life experience?  Is it a missing link for a lot of folks out there that are doing research, that are specialists in the area to be involved with someone who went through cancer? Rochelle:         When I was asked to speak at the conference for the benefit of those listening to us.  Obviously, a conference where there were a lot of specialists talking and a lot of research presented, and some keynote speakers flown in from all over the world.  I asked about the validity of why on earth I would stand up and tell my story, especially as I was a hodgy with a great story and a good outcome, and here I am.  They’ve must have heard much more horrific things than what I had to share.  I was actually told by one of the keynote speakers, who I had the privilege of talking to before the event, and he said, “Rachelle, it’s vital that you stand up at the conference and tell us your story, because otherwise we are going to get lost in statistics and statistical significance and the probably of and likelihood of. We might forget to address the whole person and we might forget to come together around the fact that there are people lives with individual stories that we are actually addressing on a daily basis.” I think it’s sort of like a reality check to have a survivor speak at a conference like that.  The warmth with which they responded was phenomenal.  Extraordinarily phenomenal for me.  I also think to some extent, there is a really important requirement in this space for advocacy on behalf of the patient and on behalf of the survivors.  There are so many more cancer survivors now, luckily, because the medical profession is allowing so many more of us to live. In some respects, I think it’s important and I know now having done it, the importance of having our stories told, having them shared amongst the profession and not just as survivors with one another, to give us a voice about what matters to us and what happens to us, and what it feels like to be on the receiving end of oncology care or haematology care or even in clinical research trials and all those other things.  I think it’s important that there is a voice for the patient and the survivor. Joe:                 Yes, that’s fantastic.  That is absolutely the voice that needs to be heard out there.  Thank you so much, Roch. Rochelle:         Pleasure.  Thanks for having me.  

In this episode, I’m talking to Daniel Sencier who shares his perspective in battling prostate cancer, dealing with a broken health system and finding new meaning and a new way of life despite cancer. Here’s what you going to find out in this interview: The hammer-blow of your diagnosis How to deal with a broken system if you fall through the cracks Why starting your blog can help you deal with cancer The importance of gathering the facts about your cancer Why some folks disappear from your life when they found out about your cancer Starting a new way of life with cancer Links Prostate Cancer – Daniel’s Blog Full Transcript Joe:                 Hey, this is Joe and welcome to Simplify Cancer Podcast.  Today, you’re going to hear from Daniel, who found a new meaning in life and a new way of life through prostate cancer, which is incredible, so check it out.  Daniel, thank you so much for coming and chatting with me.  I really appreciate it.  Daniel, I really want to start at the beginning and I really want to understand where you’re coming from with prostate cancer.  When did it all happen and how did you react when you first found out you had it? Daniel:             I only found out because I was having annual checks because my father had died of prostate cancer, and I knew it ran in families.  I just went for an annual PSA check, never expecting it to be that at all, but yes, one of the times I went, and my doctor said, “We need to look at this a bit more.” I wasn’t outside the limits, I was still 3.6, which is one inside the 4 in the UK that you have to breach before they send you to a specialist.  He said because it had gone from, well, it had doubled within about a year, so even though it had gone from 1.8 to 3.6, normally, I wouldn’t have been seen, it would have been classes as an okay by a less experienced doctor. Joe:                 Yes, how did you react?  What was going through your mind? Daniel:             When I was given the news? Joe:                 Yes. Daniel:             Well, I skipped into hospital that day because I had just been accepted onto a University degree, a four-year course.  I thought, wow, this is going to be amazing.  I didn’t even have test results on my mind because that’s all I was thinking of.  You know, at the age I was at then, you’ve been back to your doctor and the hospital so many times for your test results, and it’s so boring, isn’t it?  They say, “Yes, everything’s fine, Daniel, come back next year.” I just sat down for more of the same.  Unfortunately, you have got prostate cancer.  You know, when you see in the films, when someone’s given news, and all the background goes blurred and the sound goes off?  I thought, god, I’m having a stroke.  It was just like that.  Everything just went fuzzy and I couldn’t hear his words and his words started to fade out, all I was thinking of was, my god, I’m dying.  A child of the 60s, so cancer equals death.  There wasn’t any other scenario really.  Looking back, I needn’t have been as worried at that stage.  At the time, it was pretty shattering. Joe:                 Absolutely.  I remember that’s what happened to me, as well.  The whole world came to a stop and everything was in slow motion and the whole sound was muffled.  It was just bizarre.  Yes, I remember I was sitting at the urologist’s office and nothing made sense, it just didn’t connect. Daniel:             That’s right.  I left that day with a pile of leaflets and the worst thing that day I left with was this 24-hour helpline number.  I looked at that number and I was like, “This is like having a connection with god, at least I can ask anybody anything, anytime I want.  I took that number home.  The first time I rang it, it went onto an answering machine.  Voicemail.  I thought, wow, so I tried it a few more times.  About the fifth time I tried it, there was nothing.  At a later date, I found out there wasn’t actually anyone manning that, and the tape had actually run out because it was the weekend. Joe:                 No. Daniel:             Would you believe it? Joe:                 That’s ridiculous. Daniel:             There’s me wanting to get in touch with someone who knew what was going on inside of my body.  It was a blooming machine on some specialist’s desk. Joe:                 That’s horrible.  Wow. Daniel:             That was all part of the enquiry six months down the line, when I ended up holding a protest outside the hospital because I had no treatment of any kind for 18 months.  I’m convinced they were just waiting for me to die, you know?  Why else wouldn’t they give someone with Gleeson seven prostate cancer, why wouldn’t they give them any treatment? Joe:                 What happened?  Why weren’t you treated?  What’s the story with that? Daniel:             I was in a system where I was just floating along, and no one really knew where I was up to or what anybody else was up to.  It was a broken system, an admin system mainly, but nobody was looking at anybody and to this day, when you’re diagnosed with cancer, you think some great NHS machine is going to jump into action and they’ll know exactly what to do at every step of the way.  Nothing like that.  It was just, I was floating down a river, at the end was the waterfall of death and nobody knew I was there.  It wasn’t until I decided to hold a protest outside the hospital.  I’d never help one in my life, so I didn’t even know how to make a placard.  As part of this protest, the hospital got to know about it and they did me the biggest favor ever in the whole campaign, which was they threatened to sue me if I went ahead with the protest. Joe:                 That’s ridiculous. Daniel:             I sent that to the TV, the national papers, the Daily Mail got involved and the BBC and as a result, we went ahead with the protest.  The whole hospital board resigned.  It was just chaos at the hospital.  There was a big enquiry.  It all just went crazy after that, you know? Joe:                 Is that the time when you started a blog? Daniel:             Yes, well, it was because I had already started the blog.  I could use that as evidence as what had happened to me every day since diagnosis.  If you are diagnosed, start a blog, even if it’s only as a diary of events of what’s happening to you.  You can look back on that at any stage, either for your own personal benefit or for a surgeon’s benefit.  It’s a real record of what’s happened to you that doesn’t exist in the hospital system. Joe:                 That’s a great point, Daniel.  I guess it’s also important for people in your life, your partner, your friends, your family, it’s just crazy.  What about your wife, how did she take it all? Daniel:             My wife.  Well, from my perspective, she was in more of a state of shock than I was, and I was more worried for her than I was for me, really.  I think that’s pretty common to most men I’ve talked to.  Yes, she was just in terrible shock.  She was very supportive, and she was the main person I had talked to, but I don’t know if she’d describe it any differently.  Yes, in as just as much of shock as I was. Joe:                 Did you feel that other people in your life, like your friends, people you maybe worked with before, or someone else, did you feel supported in the way that you wanted to be supported from them? Daniel:             The friends bit, that was a strange bit, because some people who had been friends for a long time suddenly disappeared.  Like, I’d only discovered I had a half-sister about three years before, we became very close.  When she found out I had cancer, I’ve never heard from her since.  It was like, “My god, he’s going to die, I’ve just found him.” She threw me in the bin really quickly and set fire to me.  Yes, most other people, people who were only acquaintances because a real support.  It was a mixed bag, really.  All the family were fairly good, but friends, I couldn’t believe some so good and some so bad.  I guess everybody deals with it differently. Joe:                 Yes, it’s pretty shocking, isn’t it?  The same thing happened to me, as well.  Did you have any explanation to yourself, like, why people didn’t support you, that have disappeared from your life, as you say?  Why did that happen? Daniel:             I think they were scared of losing me.  They didn’t know what to say, how to bring up the subject, they couldn’t deal with it, whereas, I was dealing with it, because you have to, don’t you?  They didn’t have to deal with it and it was a much easier thing for them to cross me off their Christmas card list.  That was their way of coping, I guess.  I don’t know if you had the same thoughts on that? Joe:                 I think so.  Definitely there was a part that people probably couldn’t deal with it in a way, I think some of it was, it sounds ridiculous, but I think some of it is people might think of it as a disease, right?  Like, my god, you have it, I could catch it, too.  Not on like an intellectual level, but on a subconscious level, I don’t know if it makes any sense at all. Daniel:             I think that’s right, yes.  I remember talking in the various forums about that type of thing.  Yes, it’s like when people get aides, suddenly you become unclean.  Keep away from him, he’s got prostate cancer. Joe:                 Yes.  Absolutely.  Was your blog, was that something that helped you personally to deal with it all? Daniel:             Yes, that was one of my main helps, actually.  It was my daughter Sasha who said, “Why don’t you start a blog?” Of course, my first question was, what’s a blog?  I didn’t know what a blog was.  She explained.  Once I started it, when I look back at the early posts, the writing is terrible and my progression in writing over the years in that blog led me to the job that I do now, because at first, it was just somewhere where I went every day and I knew that I could write down all of my thoughts, all of my worries, everything.  Once I’d done that, it was like I gained peace from it.  People would respond to the blog and reply to the blog.  I’ve always had a problem with stress until I realized that on a blog, if you write down stuff, it can relieve you in a way from all of that stress, just by putting it on paper. Joe:                 Yes, absolutely.  How did people find out about your blog? Daniel:             I suppose I put it out on Facebook and places like that, to family and friends, but the main thing was when it was featured in the Daily Mail and also on the One Show in the UK, on the BBC, then it became big.  In fact, if the hospital hadn’t had threatened to sue me, my blog would still be a non-entity.  Whereas, as it is, by doing that, they turned it into a blog which has won two awards in America for best prostate cancer blog of the year.  I couldn’t have done that without that solicitor’s letter from the NHS. Joe:                 Yes, absolutely.  What sort of comments did you get from people who also had prostate cancer, from maybe the partners or friends?  What was that like? Daniel:             Yes, my friends were outraged at my struggle to get treatment.  I think they thought that I might be exaggerating at first.  Even I couldn’t believe what was happening to me.  There was just general outrage, but it was at a time when there were cases all over the country.  The NHS was slowly collapsing, as it is now still and in any collapse like that, there are victims, and I was becoming one of those. The sad thing is, is the people in the NHS, the top people who were running the trust, as they resign, they nearly always get great jobs in either Australia or New Zealand.  They get them all on Duff references, as well.  When the woman who ran the trust where I was resigned, she disappeared, and I thought, “Well, she’ll never work again, obviously, she wouldn’t even meet me.” Then six months later, I found out she was the head of a trust in New Zealand.  I wrote to that trust and I said, you must have got references, surely.  The references that she’d given were a reference from a previous job.  They didn’t even know she’d been there.  It was bizarre. For a job so important, I wrote to the ministry of health in New Zealand and said, “Do you realize that there are so many of these guys failing in England, coming over and getting jobs with false references to New Zealand?” I didn’t even get a reply because I believe they are all stitched up in the same thing, you know? Joe:                 Yes, wow. Daniel:             There’s a big thing there that we’re all unaware of.  That was quite sad, really, because most of the people who resigned from the hospital after my case are now in very good jobs.  Not in England, of course. Joe:                 With your story, did that bring about positive changes? Daniel:             It definitely brought about positive changes, yes, whether they were lasting changes, I’m not sure.  I was a bit disappointed with the apathy around the whole system here, shown by the public, that they resigned themselves to the way things are.  If more people went to that hospital and started to shout about it, I think things would improve to the same extent that they did when I did that.  People are not will to get off their bums and get out there these days. Joe:                 What do you believe is at the root of the problem?  Is it the process?  Is it funding?  What was the problem?  Why was it all happening? Daniel:             The problem was the administration.  I don’t think the problem was with nurses or doctors.  Doctors and nurses are not very good at admin, so they have an admin section that keeps everybody on the track.  That didn’t really exist.  When I complained about that and they investigated it, there wasn’t really a process in place.  That’s why my most important message of all to anybody who’s diagnosed with prostate cancer is to become your own case manager.  Don’t think that there’s somebody out there who cares more about you than you do, because there isn’t.  If you imagine for one minute that there’s a system setup to look after you, then you’re going to be sadly disappointed.  Be your own case manager, number one rule. Joe:                 That makes so much sense, Daniel.  Do you think that really applies to other areas in your life?  I guess the way that I see it, when you start to have cancer, I would say that you need to become selfish, selfish in a way that you have to put yourself first.  I think so many of us, especially men, we dedicate ourselves to a cause and put someone else first.  I think sometimes, it’s like being on a plane, where you have to put the safety mask on first.  I think we really have to put ourselves first in order to help others.  Would you agree with that? Daniel:             I agree completely.  I was in the British Army and it was number one rule.  That as soon as you come under fire, you protect yourself first, because if you don’t do that, you can’t protect others.  It’s exactly the same with prostate cancer.  If you’re dead, you’re not going to help anybody, but if you can survive this, like I do now, you can be so much use to others, raising awareness and raising funds and counselling others.  It changed my life for the better. Joe:                 You’re such an inspiration, Daniel.  With all those changes that happened with prostate cancer, and as you were going through treatment, I guess you made the choice to be proactive, the help others.  Can you tell us about all of that stuff that you started to do and how that helped you, as well? Daniel:             I’ve always been the type of person who puts themselves out to help others, anyway.  It wasn’t as hard for me.  Along the way, I did meet people with a lot of different reactions, some people get prostate cancer, they stay indoors, they hide, and they die.  They don’t tell anyone, even.  It’s very much down to your personality, I think.  I was lucky in the way that I was an outgoing person, anyway, and I enjoy helping people. When I was diagnosed with prostate cancer, it was just an extension of that, wanting to help people and it just flowed fairly naturally.  I do feel desperately sorry for people who can’t open up and can’t talk about it, that they’ll be like that in other walks of their life, in other scenarios.  Not just prostate cancer.  The more open you can be about it, the more help you’re going to get and the more you’re going to be able to help other people. Joe:                 What sort of similarities did you pick up on?  You’ve been around a lot of people with prostate cancer.  On the forums, you’ve met them face-to-face.  Did you notice some things people had in common in terms of their reactions, in terms of coping, in terms of going through treatment?  If so, what advice would you have for folks who are going through that sort of experience? Daniel:             When they were diagnosed, everybody has almost identical experiences, the shock.  It’s after that initial experience that everybody had in common, is how you go on from there.  That’s how everybody branched out different ways.  There were people who dealt with it in the, “Hey, this is not going to beat me, I’m going to kick its ass” type person, down to the, “I’m going to go home now and lock the door and die.” Everybody else was in between there somewhere.  Most people, it changed their lives for the better, if they survived, it did change their lives for the better.  It gave them a whole new take on life.  I remember after I found out I wasn’t going to die immediately, I went out into a wood and I started talking to plants and trees and touching them because I had never done that before.  I thought, “I hope nobody’s watching.” It’s going to be a white van that pulls up soon and takes me away. I get down to the ground and look at ant’s nests and spiders and I just wanted to see everything so much more clearly because I had never done that before.  I thought I was going to die, and now I’ve got a bit of time.  I’m still in remission so many years later.  It does, without that diagnosis, my life wouldn’t have been as rich. Joe:                 Yes, absolutely.  Did that also make you reassess your life before cancer?  Did you start to look at things in a different way? Daniel:             Yes, I did.  I looked back on my life on some of the things I had done, a lot of the time I had wasted on stupid stuff, you know?  When I could have done far more positive things.  I suppose as you get older anyway, time becomes naturally more valuable.  A diagnosis of cancer along the way, if you survive it, can kick that process in earlier.  I think that’s just what happened with me.  I wasted too much time and I don’t waste any time now, yes, I’m thankful for that. Joe:                 Absolutely.  Speaking about not wasting time, I know you made so many changes in your life, I believe you started your own company and now you’re living in Bangkok and you’re the treasurer of the local prostate cancer group.  You’re a McMillan volunteer.  You’ve done so many things.  How did it all about?  How does it all make you feel? Daniel:             Well, all the things you’ve said are in slightly different order, but they were all true at one time.  I did, after diagnosis, then I started the blog, I had to decide whether to do the degree or not because I was diagnosed at the same time I had found out I had just got into the course.  I’m dying and I’m starting a degree which lasts four years.  What shall I do?  I thought, well, if I start the degree, it will be far too important to have to finish that.  There’s no way I’m going to die before the end of that. Joe:                 Perfect. Daniel:             I started the degree anyway.  Then in the final year of the degree, it was a wildlife and media degree.  I got the opportunity to move out to South Africa where my wife started a company, so I joined her out there.  I finished the last year of my degree there, but then she woke up one morning and looked in the papers and there was a job in Bangkok.  We ended up moving to Bangkok.  I never believed I’d live in Bangkok, but now I’d never want to leave it.  Once in Bangkok, I started to get really bored, nothing to do, so I started doing a bit of writing, voluntarily, really, for the Expat Life Magazine out here.  Then I started doing a bit of proofreading and copywriting, then I started my own website.  Now, it’s just gone on and on from there, now, I’m even on an advisory panel at the Ministry of Education in Bangkok now. Joe:                 That’s fantastic. Daniel:             It’s really strange how I came from my life before diagnosis, which was mainly, well, I was in the military, followed by the aircraft industry, then the hotel trade for 20 years.  Being write, copywriter, proofreader, when my worst subject at school was English was really a strange outcome. Joe:                 Daniel, did you finish the degree? Daniel:             Yes, I did.  I got a 2.1, as well.  That was in spite of having surgery and having to have three months off in the first year when I graduated, I was with my wife, it was probably one of the happiest days in my life.  A day that I’d never thought I’d see a few years before that. Joe:                 That’s amazing, I think that’s a great metaphor for cancer, that it’s an education all of its own, isn’t it? Daniel:             It is.  I always have to say, if you survive it, because sadly some people don’t, and it takes them very quickly, but if you do, then it can be the best thing that could have possibly happened to you.  It sounds strange because it leaves you with other handicaps, as well, but it’s still, mentally, it’s just been great.  How can you say that about cancer?  It’s just been great. Joe:                 Yes, that’s something you don’t expect to hear, right? Daniel:             No, I even qualified as a language teacher, a salsa language teacher when I came to Bangkok.  Me, teaching English, you should see my school reports when I left.  I had an Irish mother and a Belgium Father, so there was never any hope for me. Joe:                 There you go.  Daniel, if you had a minute with someone who recently got diagnosed with cancer, what would you tell them? Daniel:             Well, the first thing I’d tell them is to be your own case manager, because I know we’ve covered this before, but don’t think that there is somebody out there that cares more about you than you do about yourself.  Start researching, know what you’ve got, know how to deal with it.  Other people can provide the skills, but you need to know what’s going on because without that knowledge, if you hide your head in the sand, then you’re leaving it to luck.  Whereas, if you become your own case manager, you not only stand a chance, but knowing what’s going on helps you to cope with it.  You can have an effect, you know? Joe:                 Yes, I couldn’t agree with you more.  As soon as I immersed myself in cancer and I did my research, I went into the forums, I found out exactly what the probable outcomes are, what the treatment steps are, and what are my options, exactly, to the point where I knew exactly what was happening.  It not only really helped me in terms of my anxiety and my fear, and all of that, but it also helped me tremendously by going to see the specialist and asking informed questions.  Did you have a similar experience? Daniel:             Yes, when I was asking my specialist questions, I think they were surprised at my knowledge.  Certainly, overnight, I knew more than my family doctor about prostate cancer.  The specialist, I think right now, I think I almost know as much as they do.  In fact, I interviewed a specialist in Bangkok recently for the Expat Life Magazine.  He was amazed at my knowledge, he offered me his white coat before I left. Joe:                 What is, in your experience, the best way to do research?  Are there particular resources you would recommend online?  Is it going to the forums, maybe? Daniel:             I don’t know what it’s like in Australia, but the UK prostate cancer charity has some great information on it and some really good links.  The forums, for me, that was the best place to go because you’re talking to people at all different stages.  Some of those guys are dying, sadly, but even the ones who are dying are passing you links to information that they’ve researched and it’s a massive wealth of knowledge between all of those people. You go on there and you ask a question and it’s like having a hundred specialists immediately zap, here’s the answer.  When you get more knowledgeable, yourself, you find yourself helping new people coming onto the site who have just been diagnosed.  The forums, without a doubt, are the most helpful, were the most helpful things to me, especially in the early days when I knew nothing. Joe:                 Yes, absolutely, the same for me.  I went to the testicular cancer forums and the guys there were so incredibly supportive.  They were sharing their stories.  Another thing that really, really helped me was, I don’t know if this happened to you, Daniel, but whenever I had any type of symptom, whether it was a headache, anything, I would immediately think, “This is cancer.” Daniel:             A classic example here, shortly after diagnosis, I went out to Cyprus to have my last holiday, do you know what I mean?  My very last holiday because, hey, man, I was going to be dead next year.  On this holiday, I started to get a red rash between my leg and my scrotum.  This has never happened to me before and then it started on the other side.  I tried to phone the UK, to the hospital but they weren’t allowed to speak to you, at the hospital by phone overseas.  I don’t know.  Anyway, I was in a terrible state.  To cut a long story short, a few weeks down the line, I found out it was a condition called: Jock itch, which is just caused by bacteria in the sweat buildup between the leg and the scrotum.  To me, it was the cancer eating through my leg, you know? Joe:                 Yes, exactly.  For me, what’s really helped me was if I put out something that’s ridiculous as my experiences on the forum, I would immediately get people sending me things, calm down, it’s something else, or whatever, right?  It was really supportive to know that almost within a matter of hours and sometimes minutes, there would be people answering my questions and that really enabled me to just calm down, take a step back and really put it into perspective, you know? Daniel:             Yes, that’s right.  It helped, didn’t it?  Stuff like that, you don’t need to make an appointment and wait weeks to see a specialist and then by the time you have, that symptom is gone anyway, and you never knew what it was, but it worried the hell out of you.  You can get it instantly, just go on the forum, ask the question and they’re all there. Joe:                 Absolutely.  Daniel, is there one particular thing that has helped you deal with cancer on a daily basis? Daniel:             Now, it’s just being grateful to be alive every day.  There isn’t really one thing that occurs to me daily now, except other than having the gift of life still and just being grateful and wanting to help others not go through what I went through.  That keeps me going. Joe:                 Yes, that’s fantastic.  If someone wanted to find out more about your journey and read your blog, what would they do? Daniel:             They would just go on the link to: [email protected].  Not an easy name to remember.  They’d find me on Facebook, even, with the name: S-E-N-C-I-E-R, Daniel.  Even now, people contact me now who have picked up on my blog and asked me questions, not so much, once you’re seven years down the line, they want to talk to someone who’s still in the first year.  They’ve got more of an up-to-date experience.  People who are of a similar distance down the line, I’ve kept in touch with a lot of them.  A lot of us are still very lucky. Joe:                 Thank you so much, Daniel.  You’re an inspiration. Daniel:             Well, it’s a great pleasure to talk to you, Joe, and thanks very much for contacting me.  Pleasure to help. Joe:                 Hey, this is Joe and welcome to Simplify Cancer Podcast.  Today, you’re going to hear from Daniel, who found a new meaning in life and a new way of life through prostate cancer, which is incredible, so check it out.  Daniel, thank you so much for coming and chatting with me.  I really appreciate it.  Daniel, I really want to start at the beginning and I really want to understand where you’re coming from with prostate cancer.  When did it all happen and how did you react when you first found out you had it? Daniel:             I only found out because I was having annual checks because my father had died of prostate cancer, and I knew it ran in families.  I just went for an annual PSA check, never expecting it to be that at all, but yes, one of the times I went, and my doctor said, “We need to look at this a bit more.” I wasn’t outside the limits, I was still 3.6, which is one inside the 4 in the UK that you have to breach before they send you to a specialist.  He said because it had gone from, well, it had doubled within about a year, so even though it had gone from 1.8 to 3.6, normally, I wouldn’t have been seen, it would have been classed as okay by a less experienced doctor. Joe:                 Yes, how did you react?  What was going through your mind? Daniel:             When I was given the news? Joe:                 Yes. Daniel:             Well, I skipped into hospital that day because I had just been accepted onto a University degree, a four-year course.  I thought, wow, this is going to be amazing.  I didn’t even have test results on my mind because that’s all I was thinking of.  You know, at the age I was at then, you’ve been back to your doctor and the hospital so many times for your test results, and it’s so boring, isn’t it?  They say, “Yes, everything’s fine, Daniel, come back next year.” I just sat down for more of the same.  “Unfortunately, you have got prostate cancer.”  You know, when you see in the films, when someone’s given news, and all the background goes blurred and the sound goes off?  I thought, god, I’m having a stroke.  It was just like that.  Everything just went fuzzy and I couldn’t hear his words and his words started to fade out, all I was thinking of was, my god, I’m dying.  A child of the 60s, so cancer equals death.  There wasn’t any other scenario really.  Looking back, I needn’t have been as worried at that stage.  At the time, it was pretty shattering. Joe:                 Absolutely.  I remember that’s what happened to me, as well.  The whole world came to a stop and everything was in slow motion and the whole sound was muffled.  It was just bizarre.  Yes, I remember I was sitting at the urologist’s office and nothing made sense, it just didn’t connect. Daniel:             That’s right.  I left that day with a pile of leaflets and the worst thing that day I left with was this 24-hour helpline number.  I looked at that number and it was like, “having a connection with god,” at least I can ask anybody, anything, anytime I want.  I took that number home.  The first time I rang it, it went onto an answering machine.  Voicemail.  I thought, wow, so I tried it a few more times.  About the fifth time I tried it, there was nothing.  At a later date, I found out there wasn’t actually anyone manning it, and the tape had actually run out because it was the weekend. Joe:                 No. Daniel:             Would you believe it? Joe:                 That’s ridiculous. Daniel:             There’s me wanting to get in touch with someone who knew what was going on inside of my body.  It was a blooming machine on some specialist’s desk. Joe:                 That’s horrible.  Wow. Daniel:             That was all part of the enquiry six months down the line, when I ended up holding a protest outside the hospital because I had no treatment of any kind for 18 months.  I’m convinced they were just waiting for me to die, you know?  Why else wouldn’t they give someone with Gleeson seven prostate cancer, why wouldn’t they give them any treatment? Joe:                 What happened?  Why weren’t you treated?  What’s the story with that? Daniel:             I was in a system where I was just floating along, and no one really knew where I was up to or what anybody else was up to.  It was a broken system, an admin system mainly, but nobody was looking at anybody and to this day, when you’re diagnosed with cancer, you think some great NHS machine is going to jump into action and they’ll know exactly what to do at every step of the way.  Nothing like that.  It was just, I was floating down a river, at the end was the waterfall of death and nobody knew I was there.  It wasn’t until I decided to hold a protest outside the hospital.  I’d never held one in my life, so I didn’t even know how to make a placard.  The hospital got to know about the protest and they did me the biggest favor ever in the whole campaign, which was to threaten to sue me if I went ahead with the protest. Joe:                 That’s ridiculous. Daniel:             I sent that to the TV, the national papers, the Daily Mail got involved and the BBC and as a result, we went ahead with the protest.  The whole hospital board resigned.  It was just chaos at the hospital.  There was a big enquiry.  It all just went crazy after that, you know? Joe:                 Is that the time when you started a blog? Daniel:             Yes, well, it was because I had already started the blog.  I could use that as evidence as to what had happened to me every day since diagnosis.  If you are diagnosed, start a blog, even if it’s only as a diary of events of what’s happening to you.  You can look back on that at any stage, either for your own personal benefit or for a surgeon’s benefit.  It’s a real record of what’s happened to you that doesn’t exist in the hospital system. Joe:                 That’s a great point, Daniel.  I guess it’s also important for people in your life, your partner, your friends, your family, it’s just crazy.  What about your wife, how did she take it all? Daniel:             My wife.  Well, from my perspective, she was in more of a state of shock than I was, and I was more worried for her than I was for me, really.  I think that’s pretty common to most men I’ve talked to.  Yes, she was just in terrible shock.  She was very supportive, and she was the main person I had talked to, but I don’t know if she’d describe it any differently.  Yes, in as just as much of shock as I was. Joe:                 Did you feel that other people in your life, like your friends, people you maybe worked with before, or someone else, did you feel supported in the way that you wanted to be supported from them? Daniel:             The friends bit, that was strange, because some people who had been friends for a long time suddenly disappeared.  Like, I’d only discovered I had a half-sister about three years before, we became very close.  When she found out I had cancer, I’ve never heard from her since.  It was like, “My god, he’s going to die, I’ve just found him.” She threw me in the bin really quickly and set fire to me.  Yes, most other people, people who were only acquaintances became a real support.  It was a mixed bag, really.  All the family were fairly good, but friends, I couldn’t believe some so good and some so bad.  I guess everybody deals with it differently. Joe:                 Yes, it’s pretty shocking, isn’t it?  The same thing happened to me, as well.  Did you have any explanation to yourself, like, why people didn’t support you, that have disappeared from your life, as you say?  Why did that happen? Daniel:             I think they were scared of losing me.  They didn’t know what to say, how to bring up the subject, they couldn’t deal with it, whereas, I was dealing with it, because you have to, don’t you?  They didn’t have to deal with it and it was a much easier thing for them to cross me off their Christmas card list.  That was their way of coping, I guess.  I don’t know if you had the same thoughts on that? Joe:                 I think so.  Definitely there was a part that people probably couldn’t deal with it in a way, I think some of it was, it sounds ridiculous, but I think some of it is people might think of it as a disease, right?  Like, my god, you have it, I could catch it, too.  Not on like an intellectual level, but on a subconscious level, I don’t know if it makes any sense at all. Daniel:             I think that’s right, yes.  I remember talking in the various forums about that type of thing.  Yes, it’s like when people get HIV, suddenly you become unclean.  Keep away from him, he’s got prostate cancer. Joe:                 Yes.  Absolutely.  Your blog, was that something that helped you personally to deal with it all? Daniel:             Yes, that was one of my main helps, actually.  It was my daughter Sasha who said, “Why don’t you start a blog?” Of course, my first question was, what’s a blog?  I didn’t know what a blog was.  She explained.  Once I started it, when I look back at the early posts, the writing is terrible and my progression in writing over the years in that blog led me to the job that I do now, because at first, it was just somewhere where I went every day and I knew that I could write down all of my thoughts, all of my worries, everything.  Once I’d done that, it was like I gained peace from it.  People would respond to the blog and reply to the blog.  I’ve always had a problem with stress until I realized that on a blog, if you write down stuff, it can relieve you from all of that stress, just by putting it on paper. Joe:                 Yes, absolutely.  How did people find out about your blog? Daniel:             I suppose I put it out on Facebook and places like that, to family and friends, but the main thing was when it was featured in the Daily Mail and also on the One Show in the UK, on the BBC, then it became big.  In fact, if the hospital hadn’t had threatened to sue me, my blog would still be a non-entity.  Whereas, as it is, by doing that, they turned it into a blog which has won two awards in America for best prostate cancer blog of the year.  I couldn’t have done that without that solicitor’s letter from the NHS. Joe:                 Yes, absolutely.  What sort of comments did you get from people who also had prostate cancer, from maybe the partners or friends?  What was that like? Daniel:             Yes, my friends were outraged at my struggle to get treatment.  I think they thought that I might be exaggerating at first.  Even I couldn’t believe what was happening to me.  There was just general outrage, but it was at a time when there were cases all over the country.  The NHS was slowly collapsing, as it is now still and in any collapse like that, there are victims, and I was becoming one of those. The sad thing is, the people in the NHS, the top people who were running the trust, as they resign, they nearly always get great jobs in either Australia or New Zealand.  They get them all on duff references, as well.  When the woman who ran the trust where I was resigned, she disappeared, and I thought, “Well, she’ll never work again, obviously, she wouldn’t even meet me.” Then six months later, I found out she was the head of a trust in New Zealand.  I wrote to that trust and I said, you must have got references, surely.  The references that she’d given were reference from a previous job!  They didn’t even know she’d been there.  It was bizarre. For a job so important, I wrote to the ministry of health in New Zealand and said, “Do you realize that there are so many of these guys failing in England, coming over and getting jobs with false references to New Zealand?” I didn’t even get a reply because I believe they are all stitched up in the same thing, you know? Joe:                 Yes, wow. Daniel:             There’s a big thing there that we’re all unaware of.  That was quite sad, really, because most of the people who resigned from the hospital after my case are now in very good jobs.  Not in England, of course. Joe:                 With your story, did that bring about positive changes? Daniel:             It definitely brought about positive changes, yes, whether they were lasting changes, I’m not sure.  I was a bit disappointed with the apathy around the whole system here, shown by the public, that they resigned themselves to the way things are.  If more people went to that hospital and started to shout about it, I think things would improve to the same extent that they did when I did that.  People are not willing to get off their bums and get out there these days. Joe:                 What do you believe is at the root of the problem?  Is it the process?  Is it funding?  What was the problem?  Why was it all happening? Daniel:             The problem was the administration.  I don’t think the problem was with nurses or doctors.  Doctors and nurses are not very good at admin, so they have an admin section that keeps everybody on track.  That didn’t really exist.  When I complained about that and they investigated it, there wasn’t really a process in place.  That’s why my most important message of all to anybody who’s diagnosed with prostate cancer is to become your own case manager.  Don’t think that there’s somebody out there who cares more about you than you do, because there isn’t.  If you imagine for one minute that there’s a system setup to look after you, then you’re going to be sadly disappointed.  Be your own case manager, number one rule. Joe:                 That makes so much sense, Daniel.  Do you think that really applies to other areas in your life?  I guess the way that I see it, when you start to have cancer, I would say that you need to become selfish, selfish in a way that you have to put yourself first.  I think so many of us, especially men, we dedicate ourselves to a cause and put someone else first.  I think sometimes, it’s like being on a plane, where you have to put the safety mask on first.  I think we really have to put ourselves first in order to help others.  Would you agree with that? Daniel:             I agree completely.  I was in the British Army and it was the number one rule.  That as soon as you come under fire, you protect yourself first, because if you don’t do that, you can’t protect others.  It’s exactly the same with prostate cancer.  If you’re dead, you’re not going to help anybody, but if you can survive this, like I have so far, you can be so much use to others, raising awareness and raising funds and counselling others.  It changed my life for the better. Joe:                 You’re such an inspiration, Daniel.  With all those changes that happened with prostate cancer, and as you were going through treatment, I guess you made the choice to be proactive, the help others.  Can you tell us about all of that stuff that you started to do and how that helped you, as well? Daniel:             I’ve always been the type of person who puts themselves out to help others, anyway.  It wasn’t as hard for me.  Along the way, I did meet people with a lot of different reactions, some people get prostate cancer, they stay indoors, they hide, and they die.  They don’t tell anyone, even.  It’s very much down to your personality, I think.  I was lucky in the way that I was an outgoing person, anyway, and I enjoy helping people. When I was diagnosed with prostate cancer, it was just an extension of that, wanting to help people and it just flowed fairly naturally.  I do feel desperately sorry for people who can’t open up and can’t talk about it, that they’ll be like that in other walks of life, in other scenarios.  Not just prostate cancer.  The more open you can be about it, the more help you’re going to get and the more you’re going to be able to help other people. Joe:                 What sort of similarities did you pick up on?  You’ve been around a lot of people with prostate cancer.  On the forums, you’ve met them face-to-face.  Did you notice some things people had in common in terms of their reactions, in terms of coping, in terms of going through treatment?  If so, what advice would you have for folks who are going through that sort of experience? Daniel:             When they were diagnosed, everybody has almost identical experiences, the shock.  It’s after that initial experience that everybody had in common, is how you go on from there.  That’s how everybody branched out different ways.  There were people who dealt with it in the, “Hey, this is not going to beat me, I’m going to kick its ass” type person, down to the, “I’m going to go home now and lock the door and die.” Everybody else was somewhere in between.  Most people, if they survived, it did change their lives for the better.  It gave them a whole new take on life.  I remember after I found I wasn’t going to die immediately, I went out into a wood and I started talking to plants and trees and touching them because I had never done that before.  I thought, “I hope nobody’s watching.” It’s going to be a white van that pulls up soon and takes me away. I’d get down on the ground and look at ant’s nests and spiders and I just wanted to see everything so much more clearly because I had never done that before.  I thought I was going to die, and now I’ve got a bit of time.  I’m still in remission so many years later.  It does that, without that diagnosis, my life wouldn’t have been as rich. Joe:                 Yes, absolutely.  Did that also make you reassess your life before cancer?  Did you start to look at things in a different way? Daniel:             Yes, I did.  I looked back on my life on some of the things I had done, a lot of the time I had wasted on stupid stuff, you know?  When I could have done far more positive things.  I suppose as you get older anyway, time becomes naturally more valuable.  A diagnosis of cancer along the way, if you survive it, can kick that process in earlier.  I think that’s just what happened with me.  I wasted too much time and I don’t waste any time now, yes, I’m thankful for that. Joe:                 Absolutely.  Speaking about not wasting time, I know you made so many changes in your life, I believe you started your own company and now you’re living in Bangkok and you’re the treasurer of the local prostate cancer group.  You’re a McMillan volunteer.  You’ve done so many things.  How did it all about?  How does it all make you feel? Daniel:             Well, all the things you’ve said were in slightly different order, but they were all true at one time.  I did, after diagnosis, then I started the blog, I had to decide whether to do the degree or not because I was diagnosed at the same time I found I had just got onto the course.  I’m dying and I’m starting a degree which lasts four years?  What shall I do?  I thought, well, if I start the degree, it will be far too important to have to finish that.  There’s no way I’m going to die before the end of that. Joe:                 Perfect. Daniel:             I started the degree anyway,  then in the final year, it was a wildlife and media degree,  I got the opportunity to move out to South Africa where my wife started a company, so I joined her out there.  I finished the last year of my degree there, but then she woke up one morning and looked in the papers and there was a job in Bangkok.  We ended up moving to Bangkok.  I never believed I’d live in Bangkok, but now I’d never want to leave it.  Once in Bangkok, I started to get really bored, nothing to do, so I started doing a bit of writing, voluntarily, really, for the Expat Life Magazine out here.  Then I started doing a bit of proofreading and copywriting, then I started my own website.  Now, it’s just gone on and on from there, now, I’m even on an advisory panel at the Ministry of Education in Bangkok! Joe:                 That’s fantastic. Daniel:             It’s really strange how I came from my life before diagnosis, which was mainly, well, the military, followed by the aircraft industry, then the hotel trade for 20 years,  then to be a writer, copywriter, proofreader, when my worst subject at school was English; a really strange outcome. Joe:                 Daniel, did you finish the degree? Daniel:             Yes, I did.  I got a 2.1, as well.  That was in spite of having surgery and having to have three months off in the first year. When I graduated, I was with my wife, it was probably one of the happiest days in my life.  A day that I’d never thought I’d see a few years before that. Joe:                 That’s amazing, I think that’s a great metaphor for cancer, that it’s an education all of its own, isn’t it? Daniel:             It is.  I always have to say, if you survive it, because sadly some people don’t, and it takes them very quickly, but if you do, then it can be the best thing that could have possibly happened to you.  It sounds strange because it leaves you with other handicaps, as well, but it’s still, mentally, it’s just been great.  How can you say that about cancer?  It’s just been great. Joe:                 Yes, that’s something you don’t expect to hear, right? Daniel:             No, I even qualified as a language teacher, a CELTA language teacher when I came to Bangkok.  Me, teaching English, you should see my school reports when I left.  I had an Irish mother and a Belgian Father, so there was never any hope for me. Joe:                 There you go. Daniel, if you had a minute with someone who recently got diagnosed with cancer, what would you tell them? Daniel:             Well, the first thing I’d tell them is to be your own case manager, because I know we’ve covered this before, but don’t think that there is somebody out there that cares more about you than you do about yourself.  Start researching, know what you’ve got, know how to deal with it.  Other people can provide the skills, but you need to know what’s going on because without that knowledge, if you hide your head in the sand, then you’re leaving it to luck.  Whereas, if you become your own case manager, you not only stand a chance, but knowing what’s going on helps you to cope with it.  You can have an effect, you know? Joe:                 Yes, I couldn’t agree with you more.  As soon as I immersed myself in cancer and I did my research, I went into the forums, I found out exactly what the probable outcomes are, what the treatment steps are, and what are my options, exactly, to the point where I knew exactly what was happening.  It not only really helped me in terms of my anxiety and my fear, and all of that, but it also helped me tremendously by going to see the specialist and asking informed questions.  Did you have a similar experience? Daniel:             Yes, when I was asking my specialist questions, I think they were surprised at my knowledge.  Certainly, overnight, I knew more than my family doctor about prostate cancer.  The specialists, I think right now, I almost know as much as they do. In fact, I interviewed a specialist in Bangkok recently for the Expat Life Magazine.  He was amazed at my knowledge, he offered me his white coat before I left. Joe:                 What is, in your experience, the best way to do research?  Are there particular resources you would recommend online?  Is it going to the forums, maybe? Daniel:             I don’t know what it’s like in Australia, but the UK prostate cancer charity has some great information on it and some really good links.  The forums, for me, that was the best place to go because you’re talking to people at all different stages.  Some of those guys are dying, sadly, but even the ones who are dying are passing you links to information that they’ve researched and it’s a massive wealth of knowledge between all of those people. You go on there and you ask a question and it’s like having a hundred specialists immediately zap, here’s the answer.  When you get more knowledgeable, yourself, you find yourself helping new people coming onto the site who have just been diagnosed.  The forums, without a doubt, are the most helpful, were the most helpful things to me, especially in the early days when I knew nothing. Joe:                 Yes, absolutely, the same for me.  I went to the testicular cancer forums and the guys there were so incredibly supportive.  They were sharing their stories.  Another thing that really, really helped me was, I don’t know if this happened to you, Daniel, but whenever I had any type of symptom, whether it was a headache, anything, I would immediately think, “This is cancer.” Daniel:             A classic example here, shortly after diagnosis, I went out to Cyprus to have my last holiday, do you know what I mean?  My very last holiday because, hey, man, I was going to be dead next year.  On this holiday, I started to get a red rash between my leg and my scrotum.  This has never happened to me before and then it started on the other side.  I tried to phone the UK, to the hospital but they weren’t allowed to speak to you, at the hospital by phone overseas.  I don’t know.  Anyway, I was in a terrible state.  To cut a long story short, a few weeks down the line, I found out it was a condition called ‘Jock Itch,’ which is just caused by bacteria in the sweat buildup between the leg and the scrotum.  To me, it was the cancer eating through my leg, you know? Joe:                 Yes, exactly.  For me, what’s really helped me was if I put out something that’s ridiculous as my experiences on the forum, I would immediately get people sending me things, calm down, it’s something else, or whatever, right?  It was really supportive to know that almost within a matter of hours and sometimes minutes, there would be people answering my questions and that really enabled me to just calm down, take a step back and really put it into perspective, you know? Daniel:             Yes, that’s right.  It helped, didn’t it?  Stuff like that, you don’t need to make an appointment and wait weeks to see a specialist and then by the time you have, the symptoms are gone anyway, and you never knew what it was, but it worried the hell out of you.  You can get it instantly, just go on the forum, ask the question and they’re all there. Joe:                 Absolutely.  Daniel, is there one particular thing that has helped you deal with cancer on a daily basis? Daniel:             Now, it’s just being grateful to be alive every day.  There isn’t really one thing that occurs to me daily now, except other than having the gift of life still and just being grateful and wanting to help others not go through what I went through.  That keeps me going. Joe:                 Yes, that’s fantastic.  If someone wanted to find out more about your journey and read your blog, what would they do? Daniel:             They would just go on the link to: [email protected].  Not an easy name to remember.  They’d find me on Facebook, even, with the name: S-E-N-C-I-E-R, Daniel.  Even now, people contact me now who have picked up on my blog and asked me questions, not so much, once you’re seven years down the line, they want to talk to someone who’s still in the first year.  They’ve got more of an up-to-date experience.  People who are of a similar distance down the line, I’ve kept in touch with a lot of them.  A lot of us are still very lucky. Joe:                 Thank you so much, Daniel.  You’re an inspiration. Daniel:             Well, it’s a great pleasure to talk to you, Joe, and thanks very much for contacting me.  Pleasure to help.

In this episode, I’m talking to Mike Craycraft who turned the tables on his cancer diagnosis to transform it into a mission to help others. Mike is amazing because he puts in an incredible effort in running the Testicular Cancer Society and continuing support of folks joining the Testicular Cancer Forums. In the interview with Mike we get to hearing about: The criticality of finding support online How to put diagnosis into a more positive perspective What conditional survival is and why that’s important How building knowledge beats cancer anxiety Taking the opportunity to live a better life and help others Links Testicular Cancer Society Testicular Cancer Forums Dial It Down Battle Scars Full Transcript Joe:                 Mike, thank you so much for doing this.  I’ve been really looking forward to it.  Mike, can you please tell me about yourself? Mike:               Sure.  My name is Mike Craycraft.  I’m a clinical pharmacist by trade and also a testicular cancer survivor.  I was diagnosed in 2006 and then founded the Testicular Cancer Society after my diagnosis just because there wasn’t a whole bunch of resources available back then.  I felt like with my survivor experience and healthcare knowledge, perhaps I could help make a difference. Joe:                 Thanks, Mike.  I know that you waited for over seven months from when you first felt a lump in your testicle until you went to the doctor.  What was the time like?  What was going through your head? Mike:               It was like a vicious cycle.  I would actually get hot flashes at night, so my scrotum would get loser and I could feel the lump.  I’d like, “I’m going to call the doctor in the morning.” I checked myself in the shower and I wouldn’t feel it and I’d go to work and I wouldn’t remember to call until it was noon, and the doctor’s office was closed.  Then I’d like, “Well, okay, after lunch I’ll call.” Then I wouldn’t remember again until six o’clock at night when the doctor’s office was closed. Then it just became this vicious cycle of just delaying, delaying, delaying.  I had a whole bunch of things going on, obviously with the holidays, with Christmas, with New Years, my dad’s birthday.  I kept thinking, well, after this, I’ll go to the doctor.  I really don’t want to come home for Christmas and say, “Merry Christmas, your son has cancer.” The next thing I know, it was pretty quick that I realized that my delay probably had meant that I had metastatic disease and I convinced myself that I would die as a young man, to the point where I even threw my own going away party.  I went back home for our Thanksgiving holiday here in the U.S.  and asked a friend what bar I could have. I’m going to rent it out and buy all the drinks and I figured in a couple of months, my friends would realize that I had cancer and was dying.  It was quite a hellish period for the seven months.  Just not sharing with anybody.  Not friends, family, doctor.  Just keeping quiet and literally living like I was dying. Joe:                 Horrible.  It just drives you crazy, doesn’t it? Mike:               It’s a very lonely period, yes.  I’m probably one of the few people that finally when the doctor said, “You have cancer”, I felt some kind of relief.  Most people were shocked, and I was just like, okay, I’ve known this.  You’re saying I’m going to live, well, great, can I get some money back because I just blew a whole bunch of money in the last seven months.  By the way, I didn’t get any back, so don’t do what I did. Joe:                 Yes, absolutely.  Yes, you’re probably one of the very few people to say that.  I know that your mind just plays tricks on you.  I know that when I was, you know, I also had testicular cancer, and when I was in the shower and I reached down and I found it, I think the fact that really helped me was that I’m a complete hypochondriac, so thing I did the next day was I ran to the doctor immediately because I was 100 percent convinced that this was cancer.  Yes, I know what you mean about you touch it the next day and it’s not there and you start doubting yourself.  Your mind starts playing all of these crazy games on you. Mike:               Yes.  It seemed like it just was a vicious cycle.  Some of it was fear, some of it was denial.  The biggest then, a whole churning in the cycle was really not wanting to upset others.  I knew I was coming home for Thanksgiving and my friends were getting married.  How can I ruin their wedding by telling everyone I think I have cancer?  How can I do it at Christmas or New Year’s, or my dad’s 60th birthday in January?  It just kept perpetuating.  Until, finally, I had a guy’s trip to Costa Rica to go surfing and I figured I wanted to learn how to surf and if I was going to die and people thought I was a surfer, maybe people would think I’d be cooler.  That was my last trip.  I said, okay, before I even leave, I’m booking an appointment for two days after I get back, so I had to go after I got back from that trip.  That was June.  It had started in October. Joe:                 Yes, absolutely.  Once you found out that you had cancer, how did you break the news to your friends, your family, what was that like? Mike:               Well, at first, before my orchiectomy, or before the test scores were moved and we knew 100 percent it was cancer.  I still kind of kept it quiet.  I said something to my parents.  I debated saying something to my sister.  My dad convinced me I should because if I didn’t maybe she’d think that I was hiding something from her.  Then literally right when I went in and the doctor first said I had cancer, I came back the next day and some friends of mine were playing music on stage and I ended up jumping on stage and making some ridiculous comment about: I’m pulling a Lance Armstrong and if anyone finds my testicle in the sand, to bring it back to me. No one even got what I said, except for one friend who immediately started crying, knowing that I was saying that I had cancer.  Once the pathology came back, then it was open season, I didn’t mind who knew or anything else.  I just didn’t want to be that guy who maybe had a testicle removed and it came back normal.  Looking back, even then, who cares?  That’s great news.  Hey, you lost a testicle, great news, you don’t have cancer.  Once I got the official news, pretty much the flood gates opened. Joe:                 How did people react?  Were they supportive?  Were they shocked?  What was that like? Mike:               Well, I actually have a funny story for you.  I guess I was being annoying one evening and one friend drew a stick figure with these round glasses on.  It had these round glasses and they used to call me Smithers from the Simpsons TV show.  It was a stick figure of me with tire tracks running across it.  On the top, it said: Kill Smithers.  They all thought it was funny.  I didn’t know anything about it, they got these t-shirts printed up, not knowing that next thing I know I say I have cancer.  Now, they don’t know what to do with the t-shirts.  They ended up all putting them on and showing up to the beach bar one day and surprising me.  It was all literally fun and games after that. My parents had travelled to Maine and came back right after my diagnosis with the t-shirt of some squirrels on a branch and a nut had fallen off, and there was a big pile of nuts on the branch.  It said: It’s all fun and games until someone loses a nut.  My mom gives it to me and asks, “Is this too soon?” It’s like, no.  Besides the humor, everybody was incredibly helpful, accepting.  All of those kinds of things.  I had a friend’s house that I stayed at for six weeks that year, because I would come back home to Cincinnati and stay with them.  People just bent over backwards to help. Joe:                 That’s fantastic.  Is there anything in hindsight that you would have done differently?  What I’m trying to say is, waiting all of this time, that must have been excruciating. Mike:               Yes.  That’s the biggest thing, looking back in retrospect, I’m glad I did it because I did have an experience that was unlike anyone else.  I also somehow lucked out and it was still stage one, which is pretty amazing.  Really, looking back, using some common sense, no, I should have gone to the doctor right away in October when I first saw the lump and really saved myself the mental beatdown that I gave to myself.  During that process, I also accepted the fact that I was going to die.  I didn’t want to die but I accepted it in my mind.  It was just as real as anybody with a terminal diagnosis.  I went through that process.  When I was going through it, I kept thinking, “I’ve had a pretty incredible life.” Of course, people have had much better lives than I have, but other people haven’t.  When I was trying to figure out, why is my life so great?  It really came down to the people I know and the friends I’ve met.  It’s nothing spectacular about me.  It just really gave me a much grander perspective on life and what was important to me.  Everything worked out fine but if I wouldn’t have beaten myself up for the seven months, that would have helped, too. Joe:                 Absolutely.  Now, that you’ve talked about back then, it’s really changed your perspective in terms of really appreciating the friends you’ve met and the people that you have in your life.  Has that been any different now all of these years later, now that you look back on it?  Has your perspective shifted? Mike:               I don’t know that my perspective has shifted that much.  I do talk about every now and again I don’t share very often with people.  When I was first diagnosed, I said, “Well, I’m going to go live my life every day.” Doing what I do, running a non-profit organization, it’s not a woes me, I look up and I’m like, “I’m not really living my life every day.” I’m sitting behind a computer ten, twelve, fourteen hours a day, that’s not exactly a good work/life balance, I guess.  In that aspect, I probably need to improve on that balance nowadays. Joe:                 What you’re doing now is really amazing because all of your non-profit work has helped so many people.  I think it’s a good time to talk about the fact that you founded the Testicular Cancer Forum and you’ve been maintaining it for ten years now? Mike:               Well, I didn’t actually found it, it actually was started by a survivor and his buddy years ago.  I actually joined the forms in 2008.  Part of the testicular cancer society was we would tell people to go to the TC-Cancer.com forums because that’s where all the guys were.  There was no reason for us to have something with our name on it, to try to reinvent the wheel.  When everybody was already going there.  We were really huge advocates for that.  About five years ago, the forums were basically to the point where they were going to be shut down.  They had some technical difficulties and the people who started it had put a decade in, basically. They came to us and I saw the value in it.  I would see guys come back years later on a questionable checkup or a second cancer or a relapse or a problem with hormone replacement therapy, or fertility questions.  I wanted to make sure that the legacy of the forums was there for those people, and all that gathered knowledge.  As well as new people coming.  We took them over about five years ago.  I’ve been on them for ten years no, but really only been the main oversight for about the last five years. Joe:                 That’s so amazing, because I know that it helped me so much when I was looking for support, when I was looking for answers, to find people who were going through what you’re going through.  It’s amazing.  Thank you so much.  I guess I want to ask, what is your main motivation for not only keeping the forums going but also being so active.  You login almost every day and you post and you support people through it?  How do you keep it going? Mike:               My goal overall was to always help the next me.  I know how I was in 2006, I know how the forums helped me.  If I can help the next guy in those ways, then it’s worth it.  It gives me pleasure to be able to do that.  I also feel, like I said before, I’m in a unique position, where I have the healthcare knowledge, where I can reach out to the top experts in the world and have a conversation with them that’s so in-depth that it would flabbergast people.  Then I could turn around, and being a pharmacist, be able to communicate back down to the person’s level that was just diagnosed, which not a lot of healthcare professionals have that ability, to really relate to the public, per say, with the information. Also, with the feelings.  Sometimes it gets difficult, sometimes you lose some empathy along the way.  Overall, no, you stop for a second and think, “Yes, this person, they’re in the exact shoes that I was.  I remember how that feels.” Taking two minutes to reply to them really can help make a difference. Joe:                 That is another thing that I really noticed on the forums, is that everyone is so supportive, even if the same questions from guys come up, because people go through the same things.  People, like you, like so many others, just respond in such a great, such a positive way, as if it’s the first time that anyone has posted in there.  I think that’s so fantastic and I can’t encourage people any more than I’m trying to do now.  What I want to encourage people is to always go to forums, like the testicular cancer forum, because I think you get so much incredible value and support out of it. Mike:               Nowadays, there’s a lot of testicular cancer groups on Facebook, which is great.  You can get almost instantaneous reaction.  The forum sometimes is a little slow as far as developing response.  What I think is really key about the forums is two things, one, they’re completely anonymous.  You pick your own username.  We’ve had situations where there’s been people on there that can’t use their real name, or don’t want to use their real name.  where, Facebook, you have to in these Facebook groups. Secondly, it’s searchable and it’s permanent, where Facebook, if someone posted six months ago, it’s going to take you an hour and a half to scroll back down and find that information.  The forums kind of are an older technology, but I think they really are invaluable for what they are.  It’s a huge collection of experience and knowledge from real life.  That’s what people need. Joe:                 Absolutely.  I think that the more resources that you have at your disposal, the better.  If I was talking to someone today who found out they had cancer, I would say, “Use every tool you can at your disposal to help yourself.  Read books, go to forums.” You mentioned Facebook groups.  I’m sure there are other resources out there.  I think people should use whatever they can, shouldn’t they? Mike:               Yes.  There are plenty of people willing to help that have been there before.  I think the forums are really good because I think there’s a high level of education and experience on there.  Again, not belittling Facebook groups at all, but I’ve been on there and seen some responses and it’s just worrisome at some point, where when I’m going through the forums, I see every post.  I don’t always comment, because if I comment on every post, then it’s Mike’s forums, not the testicular cancer forums.  I don’t always interject.  I certainly do if I see something that appears to be misinformation.  It’s very rare when going through these forums that I even see that. Joe:                 In the forums, just because there have been people who have been around for a while now and mixed with new people, it just makes much more of a community feel there. Mike:               Well, I think it’s even a self-learning process.  Where if there’s a post and there are five responses, there might be 15 responses.  Six of them or ten of them are just out there.  They’re talking about one type of testicular cancer, when the person has a different one, or they just don’t totally have the grasp of knowledge that I think the people on the forums, because they’ve been there for a while and because it’s less absorbed and it’s absorbing good information back.  I just think the quality if much higher. Joe:                 Yes, absolutely.  What would you say about, I definitely believe it really helped me to be really in the know about what’s going on at every stage of the way.  Yes, it was great to have, for example, my neurologist, then my oncologist, but it really helped me to combine that with also firsthand experience with people like yourself, and the forums, who really helped me learn so much more, all of this additional information, as well as perspective.  What do you think about that?  About people getting that mix of specialist knowledge but also real-life first-hand experience of people who went down that road before? Mike:               Well, I think they go hand-in-hand.  When you’re going through the diagnostic process and you’re trying to get staged, having someone be able to say to you, “Well, the biggest key of information is a CT scan.  Then after that it’s going to be your tumor markers and then it’s going to come down to what the pathology actually says.” Also, being able to say at the same time, your pathology shouldn’t take any more than three days and your CT scan really should be ready tomorrow.  You can go get the information yourself.  It’s an anxious hurry up and wait period.  You’re rushing through everything and then you’re waiting for those results to come back, which can create an incredible amount of anxiety. Especially if you don’t have a physician who isn’t on top of things and wants to move quickly for you.  They’ll say, “Okay, go get a CT scan, see me in a week.  Go do this, see me in a week.” It’s like, no, let’s see you two days from now.  Let’s hurry this up.  At least call and let me know what the information is, so I’m not sitting here fretting. Joe:                 Yes, absolutely.  Mike, I remember in one of your posts, when you were talking about driving your friend to her cancer treatments, I think two hours each way.  Did you find it emotionally rewarding?  Was it tiring?  Was it draining?  What was it like? Mike:               It was a friend of mine who relapsed with brain cancer.  Actually, it was one of the biggest pleasures of my life, she ended up passing away.  To be able to take her to her physical therapy or to her radiation treatments was incredibly rewarding.  As I mentioned, I put myself through that process of making peace with my life.  I feel like I was very well-able to help her along the way, as well.  It’s one of the best things I have ever done.  A two-hour drive each way was nothing, really. Joe:                 That’s great, Mike.  I also remember there was this amazing post of someone, I think they were going through stage two or stage three of testicular cancer and they were ready to give up.  Their doctor said it was going to be too difficult to operate.  I remember that you recommended a specialist in a different city to get a second opinion and that person followed your advice.  They went through with the operation.  I remember they got completely over it.  That’s incredible, Mike.  How does that make you feel?  Being able to make such a difference to somebody’s life? Mike:               It was pretty exciting when he sent the response back and filled us in with what was going on.  Yes, I guess he originally asked his oncologist to go to one of the two physicians that I recommended.  I believe I met both in person, but one I’m much more social with.  I knew that they knew their stuff.  I guess his physician did or didn’t, I don’t know.  He had a local surgeon; the surgeon wasn’t able to remove all of the cancer in his abdomen and sent him home to die.  He decided that, well, I’ve nothing to lose, I’m just going to contact the doctor Mike said.  Within two weeks, he was in the doctor’s office, Saul, that doctor/surgeon who was able to remove 100 percent of the cancer and he was cured.  He was amazed that the doctor, the specialist I mentioned was 700 kilometers away.  Which for a guy in the U.S.  you’re probably wondering why I said kilometers, it was because the patient was in Australia. I recommended either one doctor in Melbourne or another doctor in Sydney.  To be able to do that, literally from the other side of the world, really was exciting for me.  Lucky with the American Society of Clinical Oncology that I’ve been over and got to meet these physicians at the annual meeting.  There’s also what’s called G3, the global germ cell group.  These physicians are a part of that, that I get the pleasure of going to those meetings, as well.  It just all worked out in an absolutely fantabulous way. Joe:                 Fantabulous, that really is a perfect way to describe it, Mike.  Absolutely.  Mike, I know that sometimes people on the forum have clearly false alarms.  Does this annoy you or do you believe that the forum is for everyone, not just for people who are really sick? Mike:               No.  The key is early detection and treatment.  If someone comes in and they feel a lump and it really from whatever they’re describing is a pimple on the scrotum and not a testicular cancer, they’re still scared.  They’re still worried.  We can’t really tell them that it’s a pimple on their scrotum and not testicular cancer.  Certainly, being able to guide them in to get to a doctor, to get checked out.  To hope they get a scrotal ultrasound is key.  There’s also really a healthcare anxiety.  You say hypochondriac, there is a huge anxiety and some people it takes a lot of convincing to. Some people, their questions has been answered 15 times already this year, and they didn’t search through, but regardless, it’s okay.  They have a question, they need an answer.  If they would rather type it in and get an answer from everybody, that’s great.  It’s not just for those diagnosed.  It’s hugely for the caregivers, as well.  As you see, there are so many women who are on the forums.  It really is for everyone. Joe:                 Absolutely.  Speaking of anxiety, I know of one thing that comes up for me, personally, is the fear of cancer coming back.  Did that happen to you?  If so, what would you recommend to someone dealing with cancer in terms of how they can deal with it in a better way? Mike:               I don’t think the fear of it coming back ever really goes away.  I think it gets easier with time.  I know from my three-year checkup, which is a pretty big one for seminoma, I was reading through my CT results, I would always get my results before I went back into my doctor, so I would know what questions to ask instead of being shocked by what I’m told.  I was reading through, it said, interval increase in size is… and then it skipped down to the next line, not seen.  From the end of one line to the beginning of the next, I about crapped myself.  Thinking, interval is seen, instead of is not seen.  I worked with the radiologist, so I even made fun of him and said, “Listen, you’ve got to change your dictation so it all falls on one line, this is too nerve-racking.” Really, I think, as someone who’s diagnosed, having a realistic expectation of what your risk of relapse is I think is important. Having knowledge of that.  I think a lot of guys don’t.  They don’t know what their risk of relapse is.  It’s stage one disease or after chemotherapy or after chemo and RPLND what the odds of it are coming back in the second testicle are.  They get a headache and they think, “It’s gone to my brain”, which would be extremely rare to occur without some disease in the abdomen and lungs.  I think that is key.  I think, really, for stage one disease, for example, taking a look at the numbers and seeing that greater than 99 percent of guys live for 15 years, survival rate.  It’s basically almost 100 percent cure.  If you look at the guys who actually had stage one testicular cancer that passed away, many passes away from alcohol as they do from testicular cancer and the treatment.  Many more pass away from other cancers, or cardiovascular disease or lung disease. Our experience tells us the biggest challenge that we’ve had is our testicular cancer diagnosis.  I always look at it as, what is the next big challenge I’m going to face?  Yes, could this be the biggest challenge of my life so far?  The testicular cancer, I’ve always thought that.  Five months after my diagnosis, I got Dagny fever.  My odds of dying acutely from Dagny fever were much higher than dying acutely from testicular cancer.  I think putting in a perspective helps a little bit.  Knowing that they call it conditional survival.  For every two years you live, your odds of living the next two years go up, no matter what the stage is.  I think making sure you have a perspective is really key.  Then if there are anxieties, what can be done about it?  Is it something that’s affecting your daily activities?  Then you probably need to go talk to someone. There’s also the new program that came out of Australia, the e-ct.org, that’s helping guys readjust to life after diagnosis.  That’s something that they can try.  Sometimes, I think the biggest thing is to realize that some things are normal.  A lot of guys can have anxiety because they have peripheral neuropathy and it’s a constant reminder that they’ve had cancer.  When they realize that, yes, just about everybody else who’s had chemotherapy has that, as well, it’s normal.  I think that can put the mind at ease a little bit, as well. Joe:                 Yes, probably for yourself, I know that it does for me, going to the forum and seeing other people, I guess that helps put things into perspective, as well, right? Mike:               Yes, it certainly does.  Saying that you’re not the only one that’s having these fears is big.  What’s really amazing to me right now is that the most recent research looking at survivorship shows that really the fear of infertility or being able to be a father is just as high and as severe as recurrence.  Which is flabbergasting because you would think, okay, well, just go to a fertility doctor and check your sperm count a year or two after chemotherapy.  Or at least put your mind at ease or confirm it.  That’s a lot simpler than getting over the fear of recurrence.  It’s amazing that those are the two biggest things that are really affecting survivorship, as far as really a fear and anxiety standpoint. Joe:                 Well, that’s pretty amazing.  I didn’t know that.  Mike, what is your perspective on living a healthy lifestyle?  What would you recommend in terms of keeping in good shape physically, mentally?  Is it a diet, is it exercise?  What would you say? Mike:               Well, as I mentioned before, testicular cancer survivors have a higher risk of cardiovascular disease, they have a higher risk of metabolic syndrome.  Certainly, leading a healthy lifestyle is never a bad idea.  Is it in the long-run going to make a difference with your cancer coming back?  No.  Is it going to keep you from passing away from complications or, like I said, cardiovascular disease, yes, certainly.  I think there are also limits to it.  There was a great book actually written by Matthew Carr, out of Australia, called: Battle Scars.  If you haven’t read it, take a read, it’s pretty good. In it, was getting up every morning, he was big into eastern medicine, I guess it is, and martial arts, for lack of a better term.  He was getting up every morning and drinking his own urine.  When his cancer relapsed, he kind of slapped himself in the face thinking, “Seriously?  Did I think drinking my own urine every morning was going to go keep my cancer away?  What was I thinking?” I do say that there are certain limits to what you want to do, but certainly having a reasonable diet and exercise is a good idea. Joe:                 Good, thanks, Mike. Mike:               One last thing to add, people always talk about antioxidants, so one of things that you have to look at, especially when you’re on chemotherapy, people want to load up on all these antioxidants.  Go to the nutrition store and get everything they possibly can.  Well, the problem is, the chemotherapy creates free radicals to kill the cancer cells.  When you do anything too much in a zealot pathway, I always caution.  Maybe turn it back in a little bit. Joe:                 Cool.  Thanks, Mike.  If you had a minute with someone who was recently diagnosed with some type of cancer, what would you tell them? Mike:               Well, I guess it depends on the type of cancer.  I think overall is relax, take a deep breath, get some perspective and knowledge.  I think anxiety and maybe hysteria, for a lack of a better word, can take over and really cripple you, without more critically thinking about what you’re facing.  I don’t mean to be slight at all, but I heard one time that cancer has a 50 percent mortality rate.  Well, yes, overall, but the good news is that 50 percent of you are going to die of something else.  Not to be too flippant, but that kind of puts things into perspective. Now, obviously, each individual case is going to be different.  Really, taking a breath, figuring out what you’re facing, and figuring out where you’re going to get the best care.  I think that’s really the biggest thing.  Some people, unfortunately, I have to talk to and have to explain, you’re probably going to be better off getting things in order, this doesn’t look real good.  There doesn’t really seem to be any other options.  You’ve talked to the top experts.  That pathway is different.  The initial diagnosis really is just knowledge and perspective. Joe:                 If someone wanted to find out more about your journey or maybe learn about Testicular Cancer Society and the forum, what would they do? Mike:               Really, just visit our website.  Our main website is: testicularcanersociety.org.  Then the forums are at: tc-cancer.com.  There’s a tab on there.  That whole website, well, we need to redo both of our websites.  They’re kind of old.  The forums on the tc-cancer.com are really the most viable resource on there. Joe:                 Thank you so much, Mike.  It has been a real pleasure. Mike:               Absolutely.  Well, thanks for having me, Joe.