Nick Carke: Lose a leg, save your life

When the 'World at One' presenter found a lump on his leg, he ignored it. Then he was diagnosed with a rare and aggressive tumour, and told that amputation was the only thing that would save him. Here, he tells his remarkable story

I couldn't argue with Steve Cannon's logic. And it was comforting to hear someone talking about a bright future on a grim December day. My wife, Barbara, and I were sitting in a dreary consulting room with one of the country's leading orthopaedic surgeons. My journey from home to the Royal National Orthopaedic Hospital in Stanmore, north-west London, had been appallingly uncomfortable - lying on the back seat of the car, surrounded by cushions, and lifting myself up by the seatbelts to ease the pressure on my swollen backside.

Now I was propped awkwardly on a chair, watching the surgeon inspect a stack of X-rays and scans. Eventually, he asked what we'd been told.

"Just that the cancer was too far advanced for chemotherapy ... and that the removal of the tumour might involve the loss of my leg." " I'm afraid I agree," he said. With that, he sealed the fate of the hapless limb.

Mr Cannon exuded elegance and charm. Even though he insisted that he liked to be called Steve, he remained Mr Cannon to me: it didn't seem right to be over-familiar with a man who was going to cut off my leg.

He talked through the prospects - from the risks of the operation to the supply of a prosthetic limb and my chances of resuming my career. Mostly he was encouraging: of course there were risks, but he did not expect death to darken the doors of his operating theatre. He was realistic, too. "You may find the artificial leg unwieldy. Some people only use them for Sunday best."

How had it come to this? I had never had an operation before, and had never spent a night in hospital. I couldn't remember the last time I'd taken a day off work ill. And now I had not only been confirmed as a cancer victim, I faced the prospect of becoming disabled overnight.

Many people have asked me when I first realised that something was wrong. In retrospect, I knew that the first symptoms manifested themselves months ago: a stiffness in my left buttock, which I put down to the aches and pains of middle age, caused perhaps by toiling up and down stairs carrying three-year-old twin boys. Even when the stiffness developed into a slight swelling, I did nothing about it.

Then, the swelling began to grow more quickly. It also became increasingly painful. Finally I was persuaded to see our GP. The word "cancer" was uttered. The doctor wasn't prepared to commit, but I knew straight away what the diagnosis would be.

I rang my office and told them that I would be absent - for a few days at least - to undergo some tests. They weren't surprised. Everyone had been telling me how ill I looked, but I always brushed them aside, muttering something about a virus.

There followed a flurry of visits to surgeons and a series of hospital tests, the most alarming of which was the MRI scan. I pictured myself being pushed head-first into a hermetically sealed tube, bringing on claustrophobia that might be fatal. I had always been clear that I would never agree to such torture.

When the day came, there was a modicum of good news: I would be going in feet-first. But my head would still be inside the machine, and I started to panic. In the end, the day was saved by my lump - the only bit of good it ever did me: the staff accepted that it would be too painful for me to lie on it, and I was allowed to turn on to my stomach. This way, I could see out into the room and hold Barbara's hand, which I did, childlike, throughout proceedings.

A few days later we found ourselves at University College Hospital, London, waiting to be seen by an oncologist, Dr Jeremy Whelan. For the first time we heard the name of the enemy: sarcoma. With diplomacy worthy of the Foreign Office he led us carefully through the likely cause of the swelling, the implications of a tumour of such proportions, and the prognosis. There was no point pretending that chemotherapy could be used to reduce its size - surgery was the only answer. A failure to act quickly would have only one outcome - I would die.

He told this story in such an undramatic way that the conclusion seemed not so much traumatic as inevitable: if the sarcoma was to be removed, there would be no way of saving my leg. So be it. At least I would be alive. Later we reflected that it had been quite a feat to send us away in hope at the prospect of losing a limb.

We found out a lot about sarcomas in the days that followed. They represent only 1 per cent of cancers in the UK, around 1,000 cases a year. Mine was an epithelioid sarcoma, attacking the soft tissue. The beast has a habit of lying low for long periods, biding its time, often undetected by the patient.

When it does start to move, however, the sarcoma can become aggressive, consuming all in its path. It can attack shoulders, forearms, hands or thighs - which is why it frequently leads to amputation. If it spreads further, it tends to head straight for the lungs. Fortunately, the tests had shown mine to be clear.

While I waited for a slot in Mr Cannon's operating schedule, I sat at home trying not to feel sorry for myself. To be strictly accurate, I didn't so much sit as lie curled up on a sofa. Sitting for any length of time was agonising. Lying in bed was no fun, either: I tossed and turned through the night, with a series of pillows under my body which I hoped might provide relief from what was now serious pain. Each day walking became more difficult, until I could barely stand up. The painkillers I was using brought on crippling constipation. And all the time the weight was dropping off, until I could see the shock in the eyes of my visitors.

I was dying.

It was hard for others to grasp that the amputation would come as a blessed relief. Some people, understandably, found it hard to imagine how I could remain so cheerful at the prospect of losing a limb. I could see them trying to think themselves into my shoes (soon to be shoe). The very idea was peculiarly shocking, perhaps even more so than seeing a friend laid low with nothing worse than a case of cancer.

Most responded to my good cheer. Some found it more difficult. Our favourite comment was from an old friend who shook his head gravely and said with a sigh: "It gets us all in the end."

We were given a date for the operation: 19 December. Two days beforehand, we trailed painfully out to Stanmore so that I could have a blood transfusion: my iron levels were low. It was also an opportunity to meet the anaesthetist who would be dealing with my case. Dr Val Taylor was more like a friendly next-door neighbour than a highly trained professional briefing a patient.

The rest of the run-up to the big day was less auspicious. On my last two-legged night, not realising that the nurses had given me a much stronger painkiller than I was used to, I tripped over and slammed my head into the wall. This left me with a huge crescent-shaped wound from forehead to cheek.

Monday, 19 December. I had been told that after such a serious operation I might be left under anaesthetic until the following day - then monitored in intensive care for a further 24 hours. In fact, the three-and-a half-hour "hindquarter amputation" went swimmingly - so much so that I was woken up immediately afterwards in the recovery room, and by lunchtime the next day I was on my way out of the High Dependency Unit.

I felt great. A beaming Steve Cannon stopped by to inform me that, as far as he could tell, he had removed the sarcoma, leaving no cancerous cells behind. This was the best possible news.

The euphoria lasted for four or five days. That's when they removed the epidural drip. In its place I was given a cocktail of pills, which - to begin with at least - were much less effective in suppressing the pain. I began to experience the "phantom leg" phenomenon, which produces strange sensations where the limb used to be. Sometimes it is merely disconcerting, but it can be painful, too, and it requires special drugs to persuade severed nerves that there is no point in sending signals to the brain about a trauma taking place in thin air. To this day, I am still experiencing surges of pain in what feels like an ankle, positioned at knee-level. The experts say that these will gradually climb higher until they reach the stump, when the phantom will be laid to rest.

Unfortunately, the low point in my spirits coincided with Christmas. Poor Barbara was left trying to give the boys a good time in unpromising circumstances - including a visit to a miserable, unshaven invalid in a hospital bed. It took a few days to establish a medication regime to restore my equilibrium.

And the missing leg? I wasn't ready to look. It was hard enough learning to drag myself on to my side so the wound could be dressed. It took me a while to notice that the nurses always put a pillow under the sheets where the leg should have been. It made the absence less obvious, presumably reducing the psychological stress on patients and visitors.

After a while I asked for the pillow to be removed. I suppose this was the start of my coming to terms with my new condition. Barbara and I fell into a jocular approach. She relayed with delight the comment of the man who came to fit the stair-lift. "I love my job," he said. "Everyone I meet is worse off than me." And then there was the fascination of my children, who told everyone that Daddy's leg had been removed with a VERY big pair of scissors. One conversation between the boys and their friends involved a lengthy debate over where the leg had gone. Was it in the bin? Which bin? Would the white bin be big enough?

Once the news had been made public, I received a torrent of letters, calls and e-mails from listeners. My favourite came from two members of the World at One audience: one said he had been deeply affected by my absence, rather as he had been by the withdrawal of the Routemaster bus. Another wrote: "My feelings about your illness are a bit like my reaction to the trauma suffered by the whale in the Thames." When I came home, after a month in hospital, I hopped up the path to be greeted by a sign in the window: "Welcome home, Peg-leg."

Two weeks later, I still feel great, if tired. I have taken the children to school, attended a BBC party and eaten a meal in a restaurant. Each of these felt like a milestone in my recovery, but there is a long way to go. I have much to learn about living with disability: physiotherapy is demanding, and I struggle to find a way to sit comfortably on what remains of left buttock. I have fallen over in the street. And even though there are no detectable signs of cancer in my body, I have been advised by Dr Whelan to take a course of chemotherapy just in case. It will start in a few days' time.

Once it's over, though, I have plans: a family holiday, a trip to France with my cricket team (I will not be playing chaps, I promise) and a return to work in July or August. But I must remember to be careful about my language. After describing myself (in a World at One newsletter) as legless, a listener wrote: "I hope you don't mind clarifying - are you really legless, or do you still have one remaining?"

I am glad to confirm that I still have one leg ready to step into the breach, to take me wherever the future dictates.

(c) 2006 Nick Clarke. Nick Clarke is the author of Alistair Cooke and the Shadow of a Nation. This article first appeared in the Daily Mail. A portion of the fee for this piece has been donated to the Royal National Orthopaedic Hospital

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