My brilliant oncologist was determined to buy me some more time with the children and fought hard to get me onto a European drug trial. She succeeded, but prior to treatment starting she had to be sure that I understood its implications. It was hoped that this new treatment programme that hit the tumour with surgery, followed by the maximum dose of radiotherapy, followed by the maximum dose of twelve, monthly cycles of a new chemotherapy drug, might put my tumour to sleep for a while, so extend my prognosis from three years to six years. However, she looked me in the eyes and made certain that I understood that this new course of treatment would damage my brain. I confirmed that I understood by asking, “So if I agree to this trial it will buy me three more years with the children, but damage my brain in the process and I will die anyway?” She nodded. I summarised, “Well if I am to die anyway, then the brain damage doesn’t matter. I get another three years with the children. This is a no-brainer. Yes, please start me on the trial.”
As I had already had surgery, I had to start immediately on the thirty days of radiotherapy back-to-back, no breaks, followed immediately by the twelve months of chemotherapy, no breaks. Through the treatment I became increasingly cloudy in my brain. My epilepsy became increasingly difficult to control, I was suffering from random drop attacks that would leave me with little motor function in my left side, I was becoming increasingly confused over lefts and rights, ups and downs, front and back and was struggling to judge distance and time. I was struggling to pick up glasses or mugs without knocking them over. I was struggling to wash food under a tap without throwing it around the kitchen. I was struggling to manage my normal bodily functions. I was a liability to myself if I tried to cross a road without a green man and I was suffering bouts in which I would be suffering incredibly realistic auras. One convinced me that I had an eel stuck in my throat. I was choking on an imaginary eel and if I hadn’t made it to hospital in time to get a line in and off this seizure I would have died. Another convinced me that the loss of function in my left arm was due to ivy growing rapidly around my arm and tightening around my arm rendering it numb and useless before then growing up around my neck and tightening. I was once again choking, this time by being strangled by an imaginary growth of ivy. If I hadn’t made it to hospital in time, I wouldn’t be here now. I would trip my brain into a seizure if I tried to focus on my computer for longer than twenty minutes, I could talk at people for some time, but would find conversation or answering questions or understanding instructions exhausting. I struggled to recognise faces and places with my brain sometimes turning buildings into featureless white blocks like something out of ‘minecraft’ and people’s faces into featureless faces like mannequins. It could be terrifying and quite frankly I was struggling.
Shortly after my last dose of radiotherapy and first dose of chemotherapy, because of a lack of numbers, I was selected to play with the cricket team against our arch rivals and friends, Callander Cricket Club in a friendly match. The captain was well aware of my frailties but halfway through Callander’s innings, he threw me the ball and told me to bowl. I bowled a no ball and several wides but I kept trying and then out of nowhere came a flash of energy – I clean bowled the captain and my son’s cricket coach. My first ever wicket. A huge cheer from both teams erupted. During our innings, I was the final batsman in the order and was shocked to be asked to pad up. Sure enough I found myself walking to the crease with fuzzy head and wobbly legs. I was struggling to even see the ball and was amazed that I hadn’t been bowled as the ball was well past my wicket before my bat fell. But I kept trying and several overs later my brain had woken up and I managed to score a boundary with a thick edge, much to the delight of both teams. This was followed by another four and three singles. I had scored eleven runs, my highest score ever, and received a standing ovation as I walked back to the team after being bowled. Later, in the end of season tea I was awarded the prize for courage on the pitch.
One of the reasons they couldn’t cure my tumour was, I was told, because they couldn’t get the chemo through my blood brain barrier. I concluded that if I was to climb mountains then I would be pumping the heart so hard that it would force the chemo through the blood brain barrier. Living close to the Trossachs and Loch Lomond National Park, I took to climbing mountains when the children were in school. Despite being known for my good navigation in service, with this damaged brain, I became dangerously disorientated on several occasions. I was helped out by fellow walkers as they passed, some of whom became my sponsors. Twice I had an epileptic seizure on the mountains and both times I was lucky enough to be found by people who could help to get me off the mountain to safety. After the second occasion my GP called me in to his surgery and called me irresponsible. He rightly banned me from walking on my own and insisted that I found a walking partner.
While I wasn’t planning suicide or suffering from a breakdown, I was certainly bumping along the bottom of the deep dark river of despair, but I kept fighting. I wanted to beat this beast. Please read on to learn more.