I took the same tablets every day for eight months, and I was religious with them. I always took the correct doses at the right time. I used the special medical grade mouthwash the hospital gave me to stop me getting mucositis five times a day like I was supposed to. I even made sure I used my eye drops every single time I was meant to so that I wouldn’t get chemotherapy related conjunctivitis. I was so involved in my medical care that sometimes I would catch members of staff in the haematology ward giving me side-long glances, saying to themselves “Calm down Josh, looking after this stuff is supposed to be our job.”.
I know exactly why I was as involved as I was. It was my coping mechanism.
Being diagnosed with cancer took away all the structure I had in my life and replaced it with a weird imitation where every need of mines was taken care of by someone else, and the idea of that made me really uncomfortable. So I rebelled by becoming really involved in my care and leapt into full research mode so that I could have intelligent and involved conversations with anyone who’s path I crossed. I wanted to know everything. I knew the mode of action and the reason behind every substance the hospital gave me and I took pride in my knowledge.
I was never going to be the patient who sat back and let things happened.
I was thinking about this the other day, Spring has a habit of making me poignant, and I couldn’t remember the name of one my drugs. And not just any drug, the special one I got because I couldn’t tolerate the standard one they give to patients with no immune systems of their own.
I tried as hard as I could, but no matter how hard I tried I couldn’t remember it. I eventually had to google it because it was bothering me so much.
This is something I’ve noticed happening to me more and more recently, and happily it’s not down to the dreaded chemo brain but something much more simple.
It will be two years in April since I was diagnosed; over a year since I finished treatment. I spent the whole of 2016 in remission. That’s something I never thought would happen, but I’m not the most positive person at the best of times. It’s simply been that long since I was actively taking any medication that I can’t remember the names of everything. That in itself isn’t particularly interesting, but the fact that the emotional impact hasn’t lessened with time is, at least to me.
Instead of getting better, the emotional aspect of being someone with cancer has turned into a new, amorphous fear compared to the very immediate terror I experienced before. When I was hospitalised my fears were that the treatment wouldn’t work, or that I couldn’t tolerate it. On some easier days the fear was tied to the next bag of chemo coming rolling down the corridor towards my room on that hellish squeaky cart that I sincerely pray they have replaced. My fear was mixed with trust that if there was anything wrong with me or my treatment the doctors and nurses would find it, and would try their hardest to fix me.
Now, my heart beating a bit too fast or a bit to heavy after climbing stairs is enough to send me into a tail spin of anxiety where I convince myself I’m dying again in almost record time. And in the eye of that hurricane of fright, anger and loneliness I’m crouched in a fragile bunker of my own making trying to piece my life together again.
But the pieces are slowly coming back together. I’m working full time again. I’m looking to the future. While I might not have the emotional strength to make any plans, having an easy glance towards the future from time to time at what I might do is pleasant even if it doesn’t come to anything.