I struggled to write my carer’s story… a lot. How could I put into words what feels like a roller-coaster ride on a bare metal seat with half the anchoring bolts missing? I am not even the patient, and I have near-fainted twice in difficult appointments. I am supposed to be the rock in the storm, the one who remembers all details, helps ask the right questions, and advocates as needed. I am convinced I would switch roles with my wife, if I could; but I wouldn’t be half as brave as her, if it came to it.
I am a psychologist, PhD, teach at a medical school and am used to reading scientific publications. Yet I have never felt this vulnerable, dependent, and unequipped to the task. My rationale brain knows that doctors are humans with better and worse days in communicating; but that doesn’t stop me being on high alert and worrying about this phrase or that nuance in behaviour. The absolute worst was a period when drastic decisions needed to be made, yet every consecutive appointment was covered by a different person unknown to us.
I know how important it is for a patient to trust their medical team and care. I also know that one sometimes has to ask questions and push, especially when a condition is so rare. How can I possibly do both? And if I don’t, who will?
I am learning on this journey that opposites can be true. Things have both gotten worse and improved. We have been given cushions (some excellent medical staff and this group’s support), have lost and gained anchoring bolts (treatment options), and we see and help shape work for new tracks and a gentler, safer ride (a better understanding and treatment of thymic cancers overall).
I may always be a rock prone to fainting, I am still motion-sick, but we are here, and sometimes we even get to enjoy the view. I am extremely proud of Karen for starting this group and for making a real difference.