Some information can be dispensed in bright and breezy, ask-the-expert newspaper columns; some cannot. This truism was vividly illuminated while I was enduring forced rest following the amputation of my lower right leg. Leafing through a Sunday newspaper, I stumbled on a health Q&A column that addressed the precise symptoms of the disease that had just done its best to kill me.
"Recently," wrote a reader, "I have noticed a hard, bony lump around my ankle. It is not particularly uncomfortable and my GP said I should not worry about it. But is he right?" The columnist (and his byline suggested he is a qualified doctor) replied confidently. "Your GP is right. It is almost certainly a bony spur, inflammation of the tendon – tendonitis – or the beginning of arthritis. But," (and the casualness here was notable) "do keep an eye on it, trust the GP and have another word with him if it continues to bother you."
There was, as I knew only too well, another possible diagnosis: sarcoma, the type of cancer that had recently afflicted me and which had led to my amputation. This rare disease – it accounts for about 2,000 of cancers diagnosed in the UK each year, roughly 1 per cent – can develop in many parts of the body, but it often favours tendons and other soft tissue around bones of the leg. If undiagnosed, sarcoma will spread, often leading to secondary tumours in the lungs and liver.
I was fortunate – though that is a relative term – because my tumour was around my ankle, about as far from my chest as it was possible to be. But there was still a risk that it had metastasised.
Far too few GPs, and even orthopaedic specialists, know much about the disease. A GP may encounter only one in a career, if that. But I still feel angry about the absurd amount of time it took doctors at my GP surgery to refer me to specialists. Those consultants in turn had no excuse for taking months to pass me on to the UK's centre of excellence for sarcoma, the Royal National Orthopaedic Hospital in Stanmore, north-west London.
The early stages of my illness were not alarming. I had been grumbling about the small bump on my ankle for some time, and after a walking trip in Spain, during which the bends and bumps of the rocky trails caused severe discomfort, I saw a GP. He was very reassuring, and I was content that the lump was probably "a bony spur, tendonitis or the beginnings of arthritis". But under pressure from my wife, I returned to the surgery frequently. The increasing discomfort was not responding to the anti-inflammatory drugs I had been prescribed and the lump was growing, slowly at first and then with a spurt that made it extend to both sides of my ankle. By this time, I too was becoming concerned. GPs treated me politely but with a hint of the disdain reserved for hypochondriacs. Eventually, I was given the choice of seeing a physiotherapist or an orthopaedic consultant. I was shocked. The choices were poles apart. After so many months, it dawned on me that the GPs had no idea what was wrong.
Two months would pass before I could see an orthopaedic specialist, so in the meantime I visited a physio. Deep furrows in her brow suggested this was a problem she had not encountered before. After an hour or so of painful exercises, I left and did not book another appointment. At last, I saw the orthopaedic specialists. Over several consultations, I was examined, X-rayed and, finally, given an MRI scan. The procedures reassured me that, at last, something meaningful was being done. That reassurance evaporated, however, when I was told the scan results would not be available for a further four months. My dismay must have been obvious because the receptionist said, "Don't worry, you'll be called before then if there is anything to worry about."
I was not called in early, but four months later, when I turned up to see the specialist, it finally emerged that I had a tumour. But, he said, it was probably benign. They would have to take a tissue sample to be sure. The procedure was carried out a week later. Another week passed before I was told the results of the tissue sample were confusing. The clinical evidence was dispatched to the Royal National Orthopaedic Hospital, and a few days later, I was told its leading consultant wanted me to see me.
By now, I thought I knew the way this was going: goodbye "bony spur, tendonitis or the early stages of arthritis", hello cancer. The consultant had left his operating theatre specially to see me. His first question chilled me. "Why has it taken you so long to get here?" I stammered a reply: "I'd like to know that too." But going through my mind was one thought: he is about to tell me that we are too late.
Thank God, he did not. Looking up from the MRI scan imagery on his computer, he said: "You have a tumour and it is malignant. It's called a clear-cell sarcoma, and it is rare. I'm afraid there is no easy way to say this: we will have to amputate your leg below the knee. That is the only way we can be reasonably sure of stopping cancer cells from moving to other parts of your body."
He was right; there was no easy way of saying it, but as I watched my poor wife's face dissolve in shock and tears, God, how I wished there had been. I felt numb. I reasoned that it was actually better than I had feared. It was the cancer that terrified me, not the amputation. Almost as an afterthought, the consultant asked a member of his team to arrange a chest X-ray as soon as possible. "Why?" I asked. He said, "Well, there is a chance that the tumour has metastasised to your chest. It probably hasn't, but we need to know one way or the other."
I then suffered the worst week of my life waiting for the results, but thankfully was told: "Everything is fine. No sign at all of secondary cancer. Let's get you in on Sunday and we'll operate on Monday."
The relief was tremendous. But still, I was about to lose my leg, a limb that had never carried me to any sporting glory or even won a knobbly knees contest. But it had helped me cycle, walk, swim, drive and even sail through 50 years of life. Later, I would suffer a strange sense of bereavement at its loss. But the alternative to amputation was so frightening that, as I entered the cancer ward, I felt content and at peace.
Post-surgery, my stump was heavily bandaged and bulbous, like a giant Chupa Chups lollipop. I ingested copious painkillers, the physiotherapists got to grips with me and the psychiatrist checked my brief depression to confirm, I think, that I was not about do anything "silly".
Ten days later, I was home, to begin six months of recuperation.
Gradually, normal life has begun again. I can walk and drive again. This year, I even got back on my skis, albeit on the beginners' slopes. I continue to visit Stanmore to see the prosthetists who made me a new leg, the physios who train me how to use it and the Macmillan nurse consultant who monitors signs of resurgent cancer. So far, she has found nothing.
Sometimes, I am asked to meet sarcoma sufferers who are about to go into surgery. I am exhibit No 1, walking and talking evidence that there can be quality of life after such radical treatment. I have also met fellow sarcoma survivors during sessions in the gym and in the prosthetists' surgery. Seriously delayed diagnosis is a common theme in our conversations.
A greater degree of knowledge among GPs would have helped us all. There is a movement to boost awareness in the medical profession, but education will take a long time. Unfortunately, I have no doubt that many more sarcoma sufferers will make their slow way to Stanmore, where they will hear my consultant utter his chilling question: "Why has it taken you so long to get here?"