Shortly after my final cycle of chemotherapy I got on to the train in Stirling to travel to London for my nieces’ christening. As we pulled out from Stirling the train was almost empty with no seat bookings visible. I selected a seat by the window and enjoyed the view. As we pulled out from Edinburgh Waverley, I noticed that the train had suddenly filled up with rugby fans and a few minutes after departing a lady behind me said, “Excuse me but I think that you are sitting in my seat.” I stood up and checked and sure enough they had uploaded the seat bookings onto the electronic system. I offered this lady her seat back and, realising that there were now no seats left on the train except the one next to her, I took that seat and struck up a conversation. As she prepared to leave at Newcastle, with the majority of the other passengers to watch the rugby match, I gave her a flyer and asked her to sponsor me.
Once back home in Doune after the christening I saw a Facebook message from the lady on the train. She said that I had inspired her but that, as a mature PhD student, she had no money so apologised that she couldn’t sponsor me. I wrote back to reassure her not to worry. I also mentioned that I was shortly to be walking the Blackford and Braid hills in Edinburgh and would surely find a sponsor there. This lady replied by saying that she was further inspired. She looked at Arthur’s Seat every day but had never been up it as she was feared of getting down again. I offered to take her on my walk in the Blackford and Braid hills to teach her how to hill walk. She agreed and I met her at Haymarket station to start the walk from there. As we walked, I gave her the safety brief, “Should I have a seizure on the hills, don’t worry, I usually recover quickly but you will quickly realise if it is one of the more serious ones that requires emergency medical attention”. I continued, “If I do, this is how to read the grid off my satellite navigation system and this is how to make an emergency call on my mobile and, no matter what, if in doubt call 999, nobody will ever say you were wrong.” It was me at my most romantic. We got to the start of the walk and, needing a walking partner but not another relationship with just over a year left on my prognosis and a messy divorce, I had to ask, “You said you were single, are you not looking for Mr right?” to which Allie replied, “ No. I am only lonely at the moment because I am living at home alone and working on my PhD at home alone, but once I am back in work surrounded by people I will be a happy single person again.” At that reply and with my similarly negative reply to her similar question, we both relaxed in each other’s company. I needed a walking partner and Allie needed company. Despite Allie witnessing a mild seizure during that first walk, she didn’t do the sensible thing and not come walking again. Instead, Allie became my walking partner and as we walked and talked, we got to know each other better.
We became friends and Allie started to attend my oncology and neurology clinics to help me understand what was happening and interpret the medical guidance better. Every quarterly clinic the news was good and as hoped, “any change was too small to measure”. My tumour was asleep. In one particular clinic I was informed that my brain had started shrinking but only by small amounts. Around the same time, as the treatment kept fizzing in my brain, I started to develop a number of random neurological dysfunctions which would give me cause for random and sometimes violent twitches or random convulsions, or random muscle weakness and worst of the lot, SMART syndrome (Stroke like Migraine attacks After Radiation Therapy). At another clinic my team had seen something in my scans that gave them cause to insist that I booked my place in the Erskine Military Care Home in Edinburgh. On a cold, blustery November afternoon we went for our orientation. During the tour we met our first ever cognitive and motor function vegetable in a wheelchair. He was beautifully kempt but had no idea that we were there and, if he did, had no way of communicating it. It was quite a shock to see my predicted immediate future sat right there in front of us. Shortly after the nurse sat us down and advised me to complete a living will. We left impressed by the care home but cold by what we had seen. As the wind buffeted our car and the rain lashed down, we both burst into tears and sobbed in the car.
We continued walking and Allie continued to support me and, while organising another walk over the telephone, the most extraordinary thing happened. From deep inside me and with no control, the words, “I love you!” fell out of my mouth. There was silence on the other end of the phone before a quiet voice asked, “What do you mean?” Shocked myself by what had happened I stumbled over a reply that I could only think was the truth. That I loved her in a platonic way like a brother or sister. Realising what I had just done to Allie and the pressure that I had just put her under, after another walk, I took her to a late lunch in the Scottish Café and Restaurant under the National Gallery in Edinburgh. During lunch, through tears streaming from my eyes, I apologised for what had happened and begged her not to love me back. It was an emotional conversation as I reminded her that I had little time left, that even if I survived, I had poor health, no wealth and no earning potential. I had too much baggage and would be nothing but a hindrance to her.
Later, we organised another walk and after this one Allie took me to lunch at Browns on George Street. After lunch Allie turned to me, looked me in the eyes and told me that she loved me too.
Shortly after this wonderful moment, I attended another quarterly MRI scan and a few days later we went to my next oncology clinic to receive the results. The oncologist used exactly the same words, “any change is too small to measure,” only this time she swapped around the order of the words. “It is too small to measure any change.” I noticed that subtle change in wording and excitement in the room but was struggling to compute it. Allie grabbed my hand and squeezed it so I looked at her. She looked me in the eyes and said, “Arch, this is really good news!” It started to sink in. I looked back at my brilliant oncologist who was grinning from ear to ear and exclaimed, “What have you done with it? Have you lost it!?” She replied, “Archie, we just don’t know where it has gone and can only put it down to good biology. But what we do know is that it is impossible to completely get rid of a tumour such as yours. That it only takes one cell to be the catalyst for its regrowth and, while we do not know the trigger for its regrowth, we do expect it in each and every case such as yours. You will die because of this tumour, rather than despite it.” It was a weird place to be. Sort of healed but not. The sword of Damocles was hanging over my head. I had more life to live but knew not how long. Later my neurologist declared that I was permanently unemployable – that I should aspire to nothing more than volunteering in a charity shop for an hour a week. I was brain damaged and struggling but determined to keep fighting to become useful again. Please read on to learn more.
