I’m an old hand at cancer. I’ve had it nearly half my life

I live with pain as with an old friend one would prefer to distance oneself from

29 October 2015

9:00 AM

29 October 2015

9:00 AM

I remember the exact day my illness first declared itself. Twenty-seven years ago. Thursday 20 October 1988. My then wife and I were at a viewing of Harry Hook’s The Kitchen Toto at the Strode Theatre in Street when I felt a sudden, crippling pain in my back. Being 35 and a grown-up, I tried to ignore it. But the pain came back when we went for a pizza that evening, and I ended up crawling to the gents’, mewling and cawing.

It took me 11 days to summon up the courage to go to my GP. ‘I’m having terrible pain on the left of my spine. I passed something like a piece of liver in my urine. And I’ve got a lump on one testicle.’ The GP looked me up and down, as if to say, what is a young man like you doing in a place like this? ‘You’ve had a kidney stone but you’ve passed it,’ he said, at length. ‘And there’s nothing whatsoever wrong with your testicle. Now off you go and let me treat patients who are really ill.’

A few days later I left for France, to look for a house in which to save my marriage. By the summer of 1989, I had the house in France, my marriage was over, and my left kidney had collapsed and was threatening to poison me. ‘We need to take the kidney out fast,’ my French doctor said. ‘I’m sending you to Purpan Hospital in Toulouse.’

Over the next four years I was to visit every hospital in Toulouse many times. Purpan. Rangueil. Claudius Regaud. The surgeon at Purpan took out my kidney in an eight-hour operation. ‘Cutting through the muscles of your stomach was like slicing through thick dough,’ he said. I felt flattered. It’s odd how vanity and ego can so easily defeat common sense. When I left the hospital, the weather outside peaked at 44°C. Aged 36, I began to understand what it would be like to be old, as I could only walk at a pathetic shuffle, and it took me ten interminable minutes in the sweltering sunshine to reach the bus.

Thus began three terrible, pain-filled years. My doctor, who had become a friend by now, told me that the excruciating agony in my back and leg was due to adhesions from my kidney operation. I believed her. Just as I’d believed the Glastonbury GP. I became a master of pain medicines. I learnt yoga. I spent unconscionable hours beneath boiling hot showers. And still the pain didn’t go away.

I finally went to an arthritis expert in Gourdon. Sucking on a cigarette, he told me to stretch forwards over his doctor’s couch and stick my bum in the air. He touched me on the back. I screamed. ‘Well,’ he said. ‘You are either imagining this, or you have a tumour.’ He sent me for an X-ray. It showed nothing. ‘Please,’ I said. ‘Please. Just look harder.’ The doctor looked. ‘Well, there might be a small shadow here.’ He prodded the photo. I was sent for a scan. When I went in to see the consultant he shook his head sadly. ‘You have ganglions,’ he said. ‘Many ganglions.’

‘What are ganglions?’ I said. He seemed taken aback. ‘Tumours,’ he said. ‘You have tumours. All over your lymph system. You have one wrapped around your aorta and touching your sciatic nerve. That is why you have been having so much pain these last three years.’ I nearly wept with relief. At last! I might be dying, but I finally knew what I was dying of. When my French doctor realised that she had been misdiagnosing me for three years, she burst into ungovernable tears. I knew exactly how she felt. They put me on massive doses of morphine and for the first time in years I was out of pain. Hallucinating — the wallpaper creeping like an insect; the nurses’ faces swollen grotesquely — but out of pain.

‘We don’t know yet what caused your secondary cancer, but we shall conduct biopsies to find out. But first, because you are in a new relationship, we suggest taking some of your sperm in case you ever want to have another child.’ The sperm was azoospermic. Dead as a dodo. Had been for years. ‘We are going to assume, even though there is no evidence of it, that the cancer began in your testicle and then moved to your lymph system,’ they said. ‘So we are going to give you chemotherapy and radiotherapy and see what happens.’

‘But I went to a doctor in 1988,’ I wailed. ‘With a lump on my left testicle.’

‘And what did he say?’

‘Bugger off,’ I said. ‘He told me to bugger off.’

‘A shame,’ said my French consultant. ‘If caught early enough, a seminoma is among the easiest cancers to treat. Yours, unfortunately, is five years old.’

So I spent a long and miserable summer being looked after by my lovely Mexican girlfriend (who is now my wife) while the French medical system slowly saved my life. ‘I trained at the Royal Marsden,’ my radiotherapist told me, the morning of my release from hospital. ‘I am going to do you a favour and refer you on to them for follow-up when you return to England. Apart from us, they are the best cancer hospital in Europe. You are now, to all intents and purposes, cured.’

Without knowing it, by that simple kindly act, he saved my life again. I returned to England and was duly followed up by the Marsden. Eight years into my follow-up, they found I had prostate cancer. ‘But I’m only 47,’ I told them. ‘Old men get prostate cancer. Not men my age.’

‘You have young man’s prostate cancer. It’s more aggressive. We’ll have to cut it out.’

They tried their hardest, I give them that. Designed new radiotherapy around where the French had given me theirs. But seven years in, my consultant made a small bow and apologised for not being able to cure me. ‘We must now move from the curative to the palliative.’ Well. I had been there before. I’d had one miracle. Maybe I would have another?

In the intervening years I have tried every advanced treatment and every trial going. A fresh bout of chemotherapy has failed. As have enzalutamide and abiraterone, wonder drugs for some people, but for me exquisite torture. For the past two years I am back on the morphine and living with pain, as with an old friend one would prefer to distance oneself from, except one allows habit to overcome good sense. Recently, the Cancer Drug Fund has subbed me for a course of radium that, for two exquisite months, granted me what amounted to a genuine remission.

Now the pain is back. But I am an old hand at cancer. Have had it nearly half my life. I live on despite it. And when I was dying, all those years ago back in France, I had a direct experience of God that made everything OK for me from then onwards. I am easy with it now. Only occasionally get frightened. Most of the time the cancer and I have a pragmatic stand-off. It knows it will kill me. I know it will kill me. But it’s all a matter of time.

And meanwhile I can still write and I can still read and I can still bring up my three-year-old granddaughter.

Got something to add? Join the discussion and comment below.

Mario Reading’s books include two John Hart novels, The Templar Prophecy and The Templar Inheritance, and The Watkins Dictionary of Dreams.

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Show comments
  • WFB56

    A great piece, thank you.

    I had a similar episode when I was 48 but my private physician didn’t tell me to bugger off, he said that there was a small chance it was something more serious and pursued more tests and a CT Scan. This confirmed kidney cancer and I had a 3 hour orthoscopic treatment, which I paid for in Canada, which allowed me to leave the hospital two days. 11 years on and no recurrence, ganglions or pain.
    If I had relied on the NHS or the French national health system I could have had the same fate as Mr. Reading, or worse; but I learned long ago that you get what you pay for.

    • philodoc

      please tell me what orthoscopic treatment is: nothing on google.
      I am philodoc@ymail.com

    • Right: never rely on socialized medicine if you can get a proper medical establishment to treat you. That’s why, in fact, many Canadians actually come south to America when they get seriously ill….

  • willam

    I have recently paid the dear old NHS £ 30k for Sirtex treatment of my liver cancer. Here’s hoping…

  • Steed

    Wonderfully written. Here’s hoping you stay around a while longer.

  • All blessings to you, Mr Reading. What an ordeal. And this is the problem with doctors, however well-meaning, even in the 21st century: very often, will all their amazing knowledge, they simply in particular cases do not know.