Me and My Hemangioblastoma Story

Barbara is 30 years old and based in Poland. She was diagnosed with a hemangioblastoma in March 2025.Just weeks earlier, she had gotten engaged under the northern lights in Norway and returned home excited to plan her wedding. Then the headaches started.At first, they came every morning. They were consistent, but not alarming enough to make Barbara think it was anything serious. She kept living her normal life — going to work, training for a half-marathon, and planning her future. But the pain didn’t stop, and some mornings it came with nausea.One morning in early March, the pain became unbearable.Barbara went for a CT scan, expecting reassurance. Instead, within an hour of getting home, she received the results: a tumour in her left cerebellum.She was admitted to the hospital the same day. An MRI suggested it was a hemangioblastoma, and further tests showed it was a highly vascular tumour, meaning it had a strong blood supply and carried a risk of serious bleeding during surgery. Barbara underwent angiography first, followed by surgery a few days later.In this episode, Barbara shares:Going from engagement and wedding planning to a brain tumour diagnosisReading the words “tumour in the left cerebellum” on her scan resultsBeing admitted to the hospital the same dayThe shock of learning she needed brain surgeryThe conversation with the doctor that made it all feel realHolding on to the feeling that “it’s not my time yet”Emergency surgery after an EVD was neededSpending nearly three weeks in the hospitalLearning to walk again after surgeryThe emotional difference between looking physically well and not feeling okay mentallyThe nightmares and fear that followed coming homeReturning to work after three monthsWhy support from psychologists matteredLearning that recovery is not a straight lineBarbara speaks honestly about the trauma, the fear, the relief of hearing it was benign, and the guilt she felt for not “allowing herself” to feel bad because it wasn’t cancer. Her story is a powerful reminder that even a benign brain tumour can change everything.⚠️ This episode discusses brain tumour diagnosis, surgery, emergency intervention, hospital trauma and mental health after treatment.