Cancer, the NHS and me

TOWARDS the end of January, I began to realise the strange rumblings in my tummy were nothing to do with Christmas and New Year celebrations. It was not a millennium bug. Irritable bowel syndrome, said my wife, everyone gets it. Go and see the doctor.

On hearing about my various unpleasant symptoms and pains, my GP in Stockwell, Dr Van Den Berk, recommended immediate tests for bowel cancer, bearing in mind that my mother suffered from this disease eight years ago.

He said I'd be hearing from Guy's and St Thomas' Hospital, but two weeks later, with the pain and, by now, the bleeding getting worse, I had heard nothing.

He said this was quite normal. In Holland, where he comes from, they give you an endoscopy test straight away. In Britain it may take months. He would see what he could do, but he couldn't guarantee anything.

Six weeks later I heard from Guy's that a consultation (but not the requested endoscopy) had been arranged with Mr Witold Kmiot for the middle of April, and when I duly saw him he immediately confirmed that I needed an urgent examination. To avoid wasting time, he suggested I went to Guy's endoscopy department to arrange it myself, explaining that it was urgent.

"Soon means six weeks or two months," snapped a woman from the NHS Stalinist tendency without even looking up from her paperwork. "Urgent means at least a month."

It was now two months since I had seen my

doctor and still I had not undergone even a cursory inspection. How on earth do you get these people moving? For the first time I was gripped by anger and a fear that I was doomed at the hands of NHS bureaucracy.

Mercifully my spirits where lifted when I read that the Cancer Research Campaign was trying to persuade bowel-cancer sufferers to report their symptoms quickly so that they could be dealt with promptly. Although bowel cancer is the third most common killer after breast and lung cancer, it can be cured, they said, as long as it is spotted early.

This was all very well, I wrote in a letter to the Evening Standard, but it does not help those patients who can't get the NHS to examine them in the first place.

Charmingly the Standard's letters editor chose to illustrate my diatribe with a picture of a famous bottom, that of Michelangelo's David, hoping, she said flatteringly, that it resembled my own. It was probably this striking picture, rather than the letter itself, which attracted the attention that was almost certainly to save my life.

Later that evening I received a call from Professor Gordon McVie, director general of the Cancer Research Campaign, saying this was exactly the kind of scandalous obduracy the campaign was fighting against. Nowhere else in the civilised world were cancer patients treated so badly, he said. Like my GP, he cited Holland, where he had experience, as an example of how things should be done.

Professor McVie offered to intervene on my behalf to obtain speedier attention at Guy's.

When dealing with the NHS it's no use expecting fair play, he told me, you have to pull every string available to you.

WHEN I went to Guy's in mid-May for my first examination, a colonoscopy, the bureaucrats were still stalling. They told me they had not received the confirmation of my appointment I had left on their voicemail. It had been cancelled and I would have to arrange it all over again.

Another two months? After I complained that I had been fasting for two days and had swallowed a ferocious cocktail of laxatives, and that a big fuss had been made on my behalf, they agreed to examine me, apparently with no difficulty at all. There was now a tangible sense of urgency in the air, and from this point I felt I was in good hands.

The test itself was a failure because my colon was blocked, preventing the probe from passing through or taking a biopsy. But almost immediately a CT scan was arranged,

followed by a barium enema and a series of x-rays and blood tests. The man who brought me my CT scan results was clearly astonished that such a comprehensive list of tests could be carried out in one week. Normally these things are done one at a time, he seemed to be saying, with several weeks of paperwork in between. My tests proved inconclusive, which in normal circumstances would have given further fatal excuse for delay, but Mr Kmiot told me that to be on the safe side he wanted to operate to remove the blockage whether it was malignant or not. His diary was full for the whole of May and June, but with some judicious juggling he booked me in for 2 June. At last I felt there was a positive will to solve my problem, not to stall and make excuses. Upbeat thoughts can be quickly shattered, however. When I checked in at the admissions department (this time at St Thomas') I found it was next door to the bereavement counselling department. New patients and bereaved share a waiting room.

How insensitive, how inept. You wonder whether the NHS knows what business it's in.

My first appointment was with a young lady whose job it was to warn me that when I recovered from the anaesthetic the next day I might have a colostomy bag and, thanks to severed nerves and blood vessels in my abdomen, I might be impotent. "Don't worry if you see me coming to talk to you tomorrow," she said, drawing the proposed bag site on my tummy with a marker pen. "It may not happen, but I

like to talk to everyone anyway because I'm a friendly sort of person."

Happily neither of these indignities happened to me, but I think it was a piece of counselling I could have done without. The man in the next bed to me, Tom Mason, a Bermondsey postal worker blessed with extraordinary cheerfulness and courage, seemed quite unfazed by the bag lady's gloomy prognosis. He was sitting on the edge of his bed surrounded by family and post office colleagues and knocking back the disgusting laxative to clear his intestines as if it was buck's fizz. He was due on the operating theatre immediately after me for a similar operation but his condition was more advanced than mine. He had been suffering severe pain since before Christmas and was happy that he was at last being dealt with. He had been warned that his tumour might he too large to be

operated on, but he was thankful to his consultant for telling it to him straight. "Look, I'm terrified, James," he said just before we were wheeled off. "I'm absolutely terrified, but at least I'm in good hands at last. If it gives me another five years I'll die a happy man."

THEN there was Ray Collins from Sheffield, who had lost a leg and various parts of his insides in a troubled life. He wanted a colostomy bag because he had been in pain for months and everything he ate went straight through him, he said. When the nurses asked how he was in the morning he would raise a fist and say "champion". He was not being sarcastic, simply putting a brave face on adversity.

A man who did not wish to be named told me he had suffered abdominal pain for more than six months, had lost seven stone, was partially paralysed in one leg and had

to be close to a lavatory at all times. Despite all this, he could not get his GP to refer him to hospital so he had sat on a trolley in the casualty department for six hours demanding an x-ray. An x-ray appointment was fixed, then cancelled. He was put on a nil-by-mouth diet in preparation for a barium enema. Next morning he was eating breakfast. The barium test had also been cancelled. Eventually he was given an MRS scan which revealed that he had inoperable cancer in his spine and rectum.

Instead of being furious, as he had every right to be, he was relieved that he was no longer at home being a burden to his family. Doctors will tell you there is nothing they can do if patients reach them too late and this may be true, but surely a dying man deserves better treatment that this.

After 10 days in hospital one becomes more depressed by the bravery of these patients, the real heroes of the NHS, than by one's own ailments.

My own five-hour operation went rather

well. Mr Kmiot appeared at my bedside three days later holding out his hands as if he had caught a large fish.

He had removed two and half feet of my large intestine, leaving me four feet, which he said was more than adequate.

Pathology tests later showed that my tumour was cancer and that the malig- nancy had spread into some lymph nodes. Chemotherapy would be needed but compared with many of my fellow patients I had got off lightly.

I had a spectacular view of the London Eye and of the Millennium Bridge firework display. The nurses without exception were kind, sympathetic, beautiful and patient, in exact reverse to the doctors who seemed, at least from a male perspective, to be abrupt, bad- tempered and bossy. My main problem was a whiplash injury incurred on my neck while I was under the anaesthetic. No explanation or apology was offered, presumably because they are terrified of litigation. I had double vision, headaches and screeching sounds in my ears.

When no one suggests any remedy you begin to become paranoid under the influence of morphine. You think it may be something beyond everyone's control, perhaps a secondary cancer, maybe in the spine. The only instruction I received was to get out of bed and walk to avoid a lung infection. But sitting upright and walking were almost impossible. A physiotherapist would lead me around the ward, holding the seven tubes to which I was attached.

Dogs are led by their collars, pigs by their noses, but NHS patients are humiliated by being dragged around by their more intimate parts.

ONE doctor kept telling me the oxygen content in my blood was not high enough and that if I didn't walk around breathing deeply I would be at risk of a collapsed lung and a chest infection. As an asthma sufferer I have always practised a system of shallow breathing known as the Buteyko technique to avoid chest problems, but the doctor was having none of this. "Lungs are more important than necks," he said, prescribing an oxygen mask and a nebuliser and dispatching me for a chest x-ray because he told me he thought I had a collapsed lung. I think this was just intimidation and a lesson to the nurses on how to deal with difficult patients.

Every morning a nurse asked me whether I was producing adequate wind, but I don't know the answer to this one. I might have to ask Sir Peregrine Worsthorne, who has written elo-

quently about the advantages of farting on the Tube as a way of getting a carriage to oneself. I was also under orders to get my bowels moving before I could be released. This is a tall order when you have been emptied out prior to the op and have been fed on a drip for a week. I was feeding myself secretly on bananas and yoghurt brought in by my family but still there were no results.

Then a doctor told me I could be constipated by the codeine pain killers they were giving me. Why did they give them to me without telling me, I asked. Everyone has them, I was told. Why can't NHS allow its patients to make their own choices occasionally, instead of always nannying them?

These, however, are minor whinges in this national scheme of things, and my advice to Health Secretary Alan Mil-burn would be to leave the doctors and nurses alone. Instead he should concentrate his fire on the pen-pushers whose procrastinations leave x-ray and endoscopy units underused, and patients undiagnosed until they are closer to death and more difficult to treat.

I have nothing but praise for Mr Kmiot and the team that treated me. But what about the bureaucracy which failed to detect my symptoms earlier, and might have wasted more time if it had the chance?

According to Professor McVie, when he saw my pathology report, I was lucky to be alive, As the cancer had spread through several layers of my colon, my gut could have been perforated at any moment, dispersing cancer cells throughout my body. No other civilised nation treats bowel-cancer patients so badly, he said.

And Mr Kmiot endorsed this view, saying consultants had the same frustration with the NHS as its patients do. You can't rely on the NHS any more he told me. For a reasonable chance of survival you need money, or you need health insurance, he said bluntly.

My wife says my middle-aged paunch has diminished as a result of surgery and my general weight loss has stopped me snoring. Well, that is some good news anyway.

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