Sick & Tired Of The Leviathan’s Grip

Cycle 12 Day 26. Thursday, April 30th. 13:30 in the afternoon.Fam, I’m properly fuming right now.A System That Doesn’t BendYet again, the healthcare system has shown its indescribable rigidity and utter lack of logical procedure and common sense.As you might know by now, I’ve delayed my treatment currently.You might hear it already by the fact that it’s Cycle 12 Day 26. Normally, my cycle length should be 21 days.And this is due to me having agreed with the hospital system that after the third re-treatment, I am to have a follow-up PET-CT scan.And when that PET-CT scan was to be scheduled, there was no available time slot within the time frame to allow me to maintain such a 21-day cycle length.However, I was very clear that I did not want to proceed with the fourth treatment before getting the PET-CT scan and getting the results of that.Because I want to reassess our treatment strategy going forward after having gotten back the outcome of that scan.The Missed Detail That Cost TimeWhat then happened was that two to three weeks ago, when I had gotten my PET-CT scan scheduling, I asked them to book my next treatment right after that.And they came back to me shortly thereafter and said that the week after the PET-CT scan was fully booked.So there were no time slots for me to get.However, they missed a very crucial detail.There is a queue for anyone who doesn’t have a booked time slot.What they instead did two to three weeks ago was they booked me for a time slot the week after the one I wanted a slot for. Which means I’m locked in to have my treatment delayed more than a week further than might have been the case.Because if I had not had that time slot booked further ahead, I would have been very early in the queue.And there will always be slots that are rebooked and rescheduled.And then I would be at the top of the queue and I would be getting a time slot next week.But because they, without informing me of the consequences, decided to book a treatment time two weeks from now, that was locked in.And I had no visibility, no information about the fact that that lock-in made it impossible for me to get a treatment next week.The Cost of Centralized SystemsSo once again, the hospital system surprises me with its incompetence and its lack of transparency.And it’s just part and parcel of such a centralized system.Where through paternalism and standard procedure, autonomy and agency is not given to the individuals within that system.Including the patients.Including the caretakers.And this just properly sucks.I’m in a very critical situation.So I should be able to have at least some transparency into how these processes work.But it seems incompetence has overshadowed even bringing that to the table.And this is not the first time this happens.And I’m f*****g sick of it.Forced to Play the GameThe problem is, this system is as it is.And no matter how much I push my agenda in terms of asking for increased transparency, it will not come overnight.It’s a shitty system.And I need to play by the system’s rules.And I hate that.But yeah, it is what it is.My next treatment will then be, as it was locked in without my knowledge, on Wednesday, the 13th of May.So I’ll just have to make do and bide my time until then.Additional notes: It should have been clear already when agreeing to initiate retreatment with systemic therapy 3 months ago that the PET/CT scan should be scheduled after my third retreatment round. Despite this, my fourth retreatment start date was initially scheduled to be the day before my scheduled PET/CT(!!)- which makes absolute zero sense and wouldn't even be at all feasible… This mistake further delayed the treatment scheduling process…I’ve now at least fired my contact nurse from ever contacting me again. Let’s hope the next one has at least a bone of ambition and cognitive ability in her body…ClosingYeah, end of rant.But yeah—if you can stay away from these rigid systems, please do, to the largest extent possible.Because they’re definitely not being mindful of your life force, fam… Namaste. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit victorsalander.substack.com