Cancer is no longer a death sentence - so what is it like living with the disease long-term?

Cancer Research UK this week announced that the 10-year survival rate for all cancers now averages over 50 per cent. Guy Keleny reveals how he has lived with the disease for 19 years

Guy Keleny
Wednesday 30 April 2014 22:10 BST

"This disease of yours seems fairly indolent," said a charming Irishwoman, one of the many doctors to whom I owe my life. Yes, if you're going to have cancer, indolent is the kind to have. And if it's indolent enough, the advances of medical science seem to be able to keep up with it, so that every time it flares up, they seem to be able to knock it back again.

This week, Cancer Research UK announced a tipping point. The 10-year survival rate for all cancers now averages over 50 per cent. Cancer is no longer a death sentence but, in many cases, a manageable condition. I'm still here, and my cancer first became apparent 19 years ago.

In the bath, I noticed a swelling in my groin, the size of a small egg. Hello, what's that? It turned out to be a swollen lymph node. These glands cluster in various places including your groin, neck and armpits.

The diagnosis: non-Hodgkin's lymphoma, a cancer of the lymphatic system (which runs all round your body, parallel to your blood system). It's just about as mild as cancer gets, but it can still kill you. It killed Jackie Kennedy Onassis. The treatment, back in 1995, was pretty drastic: surgery to remove a run of lymph nodes on that side of my groin, followed by a debilitating course of radiotherapy. For years afterwards, with a weakened immune system and impaired lymph drainage, my left leg suffered a series of distressing cellulitis infections.

Then, seven years after the first episode, came Round Two. One night, I suffered severe chest pain, had all kinds of X-rays and scans. The cancer was back: this time in the form of "expanded ribs". Three ribs on my right side were cracking apart from within.

There followed a gruelling course of chemotherapy. Like the radiotherapy, it started not too bad, and ended loathsome. You felt really ill, your hair fell out, or thinned, and your whole body revolted at the thought of the next treatment. They are, after all, trying to poison the cancer cells to death, and the rest of you kind of gets in the way.

The good side, however, was that I was one of the first patients at my stage of the disease to have added to the mix a then-new monoclonal antibody called rituximab. It has apparently had a good effect on 10-year survival rates. My consultant told me that the rituximab "added" £7,000 to the cost of my treatment. I didn't enquire what the cost of the basic version was to which the £7,000 was an extra. Anyway, thank you, NHS.

So the years rolled on and I passed the magic 10-year survival line. About 15 years after the original diagnosis, I was declared cured and discharged from the care of my consultant. No more twice-yearly outpatient appointments. My family and I smiled. The Fates smirked: less than a year later, I put my hand up to my neck – and felt a lump, just like the one in my groin all those years ago.

Oh dear, I'm for it now, I thought. But no such thing. Off to St Thomas' Hospital again, where they crafted a futuristic mask to hold my head still for the application of modern, minutely targeted radiotherapy. A mere two sessions of treatment; no distress; and the lump just disappeared.

That's all – so far. Touch wood and keep your fingers crossed.

So yes, cancer, at least the more amenable kinds of it, is these days a condition that can be managed (with a bit of luck). Of course, it may well kill me in the end. I've still got that "indolent" low-grade disease, lurking, symptomless, in my system. It could bust out into symptoms at any moment. It's rather as if you had to throw a die once each year: if it comes up a six, you're for it. And as I get older, now nearer 70 than 60, I assume I will become less able to survive another outbreak of the disease, not to mention the treatments.

But who knows? Maybe by the time the lymphoma comes back to gnaw again at my enfeebled frame, the treatment will have got even simpler and more effective. I could live to die of something else.

What's living with cancer like? Well, in my case, most of the time it's just the same as living without cancer. But every few years, you get a reminder that you could die at any moment – but that's true for us all, and there's no harm in being reminded of it.

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