The End of Chemo

The picture was taken on Friday, it’s the last photograph of me in the chemo ward at UCLH. I’m delighted to share the news that, after six months, I’m on my final cycle. The last round of drugs still need to wash through me but I’ve been running a marathon and this is mile 25. I may be tired, fed up, desperate for it to stop – but I’m reaching the end.

The worst of it was about 4 weeks ago. For some time, I’ve been suffering from neuropathy, a kind of damage to your nerves. Doctors and nurses ask “Are you suffering from pins and needles?” and that really doesn’t convey the half of it. On good nights, I lie in bed, my nerves jangling like a set of keys. In the morning, I wake and I go to the gym and my hands are clawed shut. Most days, I get neuropathy in my nose and lips. When the Roman Emperor Justinian lost his throne, his captor chopped off his nose to humiliate him. It feels as if mine too has been sliced off, then salt poured on the broken skin

Sometimes – I could be walking through the city, in a crowd – I get neuropathy in the skin around my eyes. I stand there for long minutes, waiting to get my sight back.

The worst was four weeks when it spread to my mouth. For days, it was as if some torturer-antagonist was burning my jawbone with an oxyacetaline torch. The hospital recommended I drink salt water. “Just a placebo,” the consultant told me breezily at our next appointment.

But, I insist, I’ve been lucky. Many people don’t finish the 6 months; I will. Apart from the neuropathy, I’ve not been in pain or nauseous. I probably will still get numbness and fatigue for more months to come; the consultant insists that since the pain in my eyes and jaws has not been continuous, I probably won’t suffer it in future.

I still have surgery to go through, to reverse my ileostomy. Then tests to see if the cancer has come back. So far, all of that’s been positive.

People associate cancer with dying; we carry our memory of the time – not so long ago – when every diagnosis was a death sentence. Honestly, it’s a relief to have consider the prospect and to have faced it with equanimity. Maybe I could because he risk was still abstract.

What’s annoyed me more was the uncertainty – there’s are three possibilities from here - a version of the future in which I get 18 months of fatigue, am then healed, and live to the same age I was always heading to. There’s a second version in which the cancer some back next year and I end up being 3-4 years from diagnosis to death. There’s also a further version in which I get longer from here than the worst but not as long as the best. What bothered me most was that feeling that I didn’t know, and might know for ages, which hand I’d been dealt. I still don’t know, not odds. That’s an uncertainty I’ll just have to live with.

Maybe the disease has given me something of a Samson complex. Again, I can’t unwill that. And yes – these things are connected – I’m writing more than I was 18 months ago, but that’s because I was then working 40+ hours a week in a job which gave me the false impression that I had more energy, more ability to spot connections that anyone around me - except, of course, for the barristers on the other side. Take all that labour away and writing’s the obvious way of using up that some of my new spare time to good effect. In work terms, I’m doing 90% less than I was when I was altogether well; the writing I do now is more public. I’m often in bed for 22 or 23 hours a day; if I give the impression of energy, don’t believe the hype.

I have friends and family with cancer in a far later stage than I do. I have had people I’ve loved who’ve died of those conditions. You, dear reader, must have people in the same position as them. Guard your love for those at a later stage, me I’m looking forward to recovery.