On 25 June 2019, it was a glorious sunny day in Glasgow. I spent the morning cheerfully packing suitcases with my wife, Jackie. I was a script writer by trade, and a songwriter with my Americana band the Sweetheart Revue, which had been ambling along for 14 years. For the first time in my precarious freelance career, I had money in the bank, a whole six months of work lined up, and we were flying out the next day for a special-treat holiday in Portugal with the kids. I had never felt so fortunate.
After lunch we walked our loving, neurotic mongrel Pepper by the River Kelvin. That’s when I got the call. I had been having headaches every day since Christmas. My GP couldn’t explain them but was sure it was nothing serious. I finally had a CT brain scan just as the headaches seemed to be subsiding. Oh, the irony, I thought.
As we walked into Kelvingrove park, a softly spoken neurologist explained that there were shadows on my scan and I needed to come in for an MRI the following week, when we were due to be in Portugal. He said the shadows were potential signs of some kind of mini-stroke. OK, we thought, faintly terrified – at least it’s not a tumour.
I had my MRI scan in what I would later dub the bad news machine. It showed a sizeable tumour inside my spinal cord in the neck area, a cloudy streak of milky “diffuse” bad stuff down the rest of my spine, and various dots – tumours – in my brain. “Come back, mini-stroke,” I thought, “all is forgiven.” I was just getting used to being old – 45 – and suddenly I was too young to die. Jackie cried, I didn’t. After the worst afternoon since records began, we headed home and literally hid under the covers. “I’m scared,” said Jackie. “Me too,” I replied.
Then followed a cascade of bad news. Over weeks and months, defiant little patches of hope were washed away one consultation at a time. My left arm, which had started weakening before diagnosis, got worse to the point of redundancy. Playing the guitar was no longer a thing that I could do. It turned out I have a diffuse leptomeningeal glioneuronal tumour, a super-rare condition, only defined in 2016 and found almost exclusively in dreadfully unfortunate children. My being an adult made mine super-duper rare which, according to friends, was very me. As a godless rationalist, I felt astronomically unlucky.
On Christmas Eve in 2019, my oncologist offered a prognosis for the first time. It was never going to be good news, but hearing the words “months to a year” was mesmerising. A grief counsellor said that being honest and open with our children was imperative, and it already felt instinctively right. It was beyond awful, watching the best kids in the world crumple and sob, but we’ve never regretted it. It was liberating. Finally we were all on the same page and, even if that page was soaked in sadness, we were together. Maybe I wasn’t so unlucky after all?
My band, the Sweetheart Revue, habitually moved so slowly, and in a state of relative anonymity, that I had regularly considered calling it a day. Then I realised that being part of it was a massive privilege. We had become a tight-knit wee gang. Our practices generally begin with everyone having a whinge, swapping gossip and then, magically, a gentle lift-off, each of us forgetting our troubles as we get lost in making music. It’s a kind of therapy or mindfulness, a precious escape.
In the face of cancer, the band became a key part of my support system. Making a new album became my main focus. The plan was for the first half to be songs I had already written. The second half would be about my new reality. The first new song to emerge, Positive, was meant to be about the hell of being told to “stay positive” in the face of impossible odds … but it morphed into a very frank, episodic account of that action-packed first year living with the enemy inside:
The situation’s getting pretty desperate, so it seems
But I’m remaining calm among the ashes of our dreams
Either I’m so very brave or it’s the amitriptyline
That keeps me vaguely positive
Some of the songs came easily, others took a lot of reworking. Positive was easy to start but impossible to end. Lockdown made recording tricky, as did starting radiotherapy on the morning of our first session, but it was a joy nonetheless. I felt far more open to new ideas and happy accidents than usual; less of a control freak and (hopefully) more pleasant to work with.
During this time, I had a nightly routine of waking up around 3am with my neck and shoulders locked in agony. I would down two dihydrocodeine, head for the living room and vape some “medcreational” cannabis. The neck pain made getting my headphones on hellishly difficult, but worth it when I could start the amazing playlist of songs that friends had made for me: Now That I’m a River by Charles Watson, In Dreams by Tomemitsu and Ich bin nicht der Grund by Klaus Johann Grobe became big favourites. Gently moving to the music helped loosen things up, and each song reminded me of fantastic friends, gigs and big nights out. After half an hour, I was almost dancing.
The nocturnal pain has gone, thankfully, but I feel weirdly nostalgic for those hours spent bopping around in the middle of the night, alone but not really. Meanwhile, my left arm came back to life thanks to radiotherapy. I could just about play the guitar again. My long-term prospects haven’t changed much, but the return of my arm felt miraculous. It was the first non-terrible news since this all started. Positive finally found its final verse.
They gave me months to a year, I tried to give them right back
Then I did pretty well under a radio attack
Go on ask me how I am and I will tell you for a fact
That I’m feeling positive.