Untold Stories
I tried to sidestep most of this, knowing it would depress, but one item caught my eye: an interview with Professor Gordon McVie, then the Director General of the Cancer Research Campaign. It had been well advertised in the press that, after establishing itself in the bowel, the cancer’s next port of call was often the liver.
‘And what’, enquired one fearless newshound, ‘are Leeson’s chances if the cancer has reached the liver?’
‘Zero,’ said Professor McVie or (which may have been a very different thing) that was what he was reported as saying.
Now I knew from my original operation that the cancer had reached my liver, if only just. So, unlike the pronouncements of my surgeon, which at least gave me a fighting chance, this pronouncement offered no hope at all. It’s to be hoped Professor McVie was indeed inaccurately reported, because even if what he said were true, it scarcely helped to say so, and there must have been thousands of patients like myself for whom it seemed to sound a death knell. Leeson is not an appealing figure and altogether too cocky for my taste, but cancer made us kin. He was not the only one. Around this time Ian Dury succumbed too, and I even felt some kinship with the far more unlikely figure of King Hussein of Jordan, whose last months with cancer were served up and lengthily dwelled on by the press.
My own liver was obviously a source of concern to the doctors, and in the first three years following the operation was repeatedly sounded and scanned, so far, anyway, revealing nothing, as they say, sinister.
‘And,’ the scanner would say, ‘I’ve had a good look round, besides.’
Regardless of age, looks or gender, radiologists never know how close they come to being kissed.
Cancer licenses hypochondria. Watchful for the disease’s recurrence, one feels there is no ache that can be safely neglected or symptom ignored. In early detection lies the best hope of cure: and having, as I saw it, neglected this precept in the past, I was anxious not to make the same mistake again. So, a sore knee or an hitherto unnoticed mole would send me to the doctor’s, never knowing in what guise any new assault might occur. I was lucky in having an understanding GP, and the regular checkups that an operation for cancer requires, particularly in the early post-operational stages, helped to keep me on an even keel, and in some respects ensure that my general health was better than it had been before.
It was discovered, for instance, that I was on the edge of diabetes which I would not otherwise have known, so that precautions could be taken accordingly; high blood pressure similarly. It’s true that I had reached the age when such perils and prudences are the common thing but I owed it to cancer to remind me.
The regular check-ups which are part of the treatment of cancer helped allay any incidental anxieties. Did you get cancer in the elbow, I wondered, as mine was quite painful. Was the thumb a site? One of the blessings of the seriousness of the disease was that nobody seemed to mind one asking these fool questions. Every three months I had a blood test and saw either the surgeon or the oncologist, a routine I kept up throughout the five years and, though in the later stages this was probably more frequently than I needed to, suited me, and I was paying.
Still, I never made these appointments without foreboding and there were often anxious moments when the blood tests were not clear, and I was sent for an ultrasound or a scan. I learned to measure out my existence in these three-monthly spans. Life became a series of small paroles, and I never came away without a sense of reprieve, wheeling my bike back through Regent’s Park often a time of idyllic happiness. For all these check-ups, though, when in due course illness did strike, it was sudden and unexpected.
In April 1998, nine months after my first operation, I was taken into hospital with a high temperature and pain in my right side. It was in the area of the appendix but, in the light of the cancer, the doctors at University College Hospital were at first reluctant to settle for that diagnosis, presumably thinking that the most likely explanation was a recurrence.
That seemed the likeliest explanation to me, too, but the truth was I felt so ill I hardly cared, every jolt of the ambulance taking me to hospital, agony. Eventually, I was transferred to the Middlesex, where appendicitis was finally diagnosed; the appendix itself not to be found having, presumably, disintegrated, and in its place an abscess which was lengthily and tediously drained. It meant that, as on several previous occasions in my life,* I was in hospital on my birthday.
Two years later I had a similar episode, which again was thought to be the cancer recurring but turned out to be the residue of the previous infection. Both episodes included sudden rigors during which I shivered so violently that I felt I’d been attached to an electronic machine; my teeth chattered and in the stiflingly hot room I was bitterly cold. It’s not an unusual symptom, though alarming to experience and spectacular to watch and, as often in such circumstances, there was part of me, moaning and shaking as I was, that registered how seriously ill I must seem. Stripped of my bedclothes to fetch my temperature down, it seemed to me like the onset of death, but was, in fact, not grave at all. This, too, was around my birthday.
I hesitate to dignify such self-scrutiny as a writer’s instinct as it seems to me often closer to self-dramatisation. But there is no doubt that knowing that one day (provided there is a one day) you may write about what is happening to you (or just write it down) is a solace not on offer to patients unblessed by a similar instinct. For a writer, nothing is ever quite as bad as it is for other people because, however dreadful, it may be of use. Living is something I’ve managed largely to avoid so, naked and shivering on the bed though I might be, for all that I could reflect that something at least was happening.
The most painful experience had, as I say, nothing to do with the cancer, the operation for which had left me only a little sore and with a scar so lengthy it was something of a trademark.
‘Ah ha!’ said a consultant at UCH, as he kneaded my belly a year or so later, ‘I see you were operated on at St Mark’s.’
This was shortly before a tube had to be introduced to drain the abscess on the appendix. I had assumed that this would be done under Valium, a drug I find so delightful I’m happy to submit to any investigative procedures that have to accompany it. Laid out on a trolley in the basement of the Middlesex, I kept expecting the needle on the back of the hand and the near-oblivion and telescoping of time that generally come with it.
It was only when I saw the professor in charge running his hand speculatively over my abdomen, deciding where to insert the tube, that I realised this was to be done cold. It was kindly, if a sudden blow to the belly can be called kind, and it had to be weighty enough to force the tube through the stomach wall. But it did not end with that, as thereafter he followed the progress of the tube on a screen, while he guided it round my guts to try to reach the root of the infection. It was like being host to an angry hornet that was crawling around one’s insides, stinging as it went. The martyrdom of St Erasmus, whose intestines were wound round a wheel, must have begun in much the same way.
I was probably crying out because a nurse who was passing stopped and held my hand. Perhaps no more than a gesture of fellow-feeling, it seemed to me at the time like the kindest thing anyone had ever done for me: he was an angel and I loved him. Then the tube must have got to the root of the abscess and the accumulated pus began to flow out in gratifying quantities, as the professor rejoiced. I did not care. All I cared about was that the pain had stopped. The nurse wiped my face and went on his way.
The two sessions I had in UCH and the Middlesex gave me a chance to compare them with the treatment I’d had in private hospitals. Some comparisons could be direct. I have had scans, for instance, in all three, and while there is little to choose between the performance of the scan itself, even in the attendant circumstances the NHS came out of it quite well. There was no greater degree of privacy in the private or the public sector; the waiting area was just as crowded at the Princess Grace as at the Middlesex; the class of people was different and s
ometimes their nationality, but in both one had no choice but to traipse around in a hospital gown in full view of one’s fellows, so if what you think you’re paying for is seclusion, certainly in the treatment room, it’s money wasted.
On the ward, I’m not sure that money spent on privacy is not wasted, too. However rotten I was feeling, I never felt so low on a public ward as when in expensive isolation. It’s partly that on a public ward one comes to know the nurses and their routines; one sees the changeover from the night to the day shift, the daily formality of the ward round and the comings and goings of consultants of varying age and exaltedness. Something is always going on and with the same cast. Because what is above all comforting and professionally reassuring is that the same faces recur day after day. It seems to me incontestable that outside the specialist units of the private hospitals, where there is a permanent staff, the general ward nursing in the NHS is better than in the private sector, and it is better principally because there is more continuity.
Even though the NHS nowadays draws on more and more agency nurses, you are still much more likely on the NHS to be nursed by a regular team, or by nurses who have seen you before and are familiar with your case. Nurses in private hospitals seem to change from day to day. They may familiarise themselves with your case, but it’s from your notes, not from personal observation.
It’s my impression, too, that whatever the rates of pay in the respective sectors, one is more likely to meet with a degree of selflessness in the NHS than in the private hospitals. At UCH and the Middlesex I still had a sense that for most of the nurses this was a vocation; in private hospitals one is never sure it’s not just a job.
And yes, the loos may not be so clean, and you don’t have your own private facilities, but it’s not worth £500 a day or whatever the premium BUPA extracts in lieu. And (no small recommendation in my book) with the NHS there are more jokes.
Jokes or no jokes, though, cancer was hard to forget, and though it often seemed more like a predicament than the siege it is always represented, what brought it home was any circumstance that required projection into the future. Having recently acquired a bus pass, shortly after being diagnosed I had to renew it. Looking at the expiry date a couple of years hence, I realised I might not be alive by then, and that was a shock.
Not long after the operation I remade my will, though without making any of those far-reaching, tax-saving provisions I could have made had I felt able to project a future running to at least seven years. This, as it turned out, was foolish, but I was so convinced of my impending death, I could not see the point. My solicitors and accountant were handicapped by my presumption of an early departure and a little embarrassed by it, though it’s a situation that solicitors, in particular, must often find themselves in. Would-be testators often lived for years with such a diagnosis, they assured me; better to take the longer view. I would have none of it, made my dispositions as if they were shortly to be executed, got on my bike and cycled briskly home.
I wish I could record that the prospect of death threw open the creative floodgates, but it was not so, and short of the autobiographical scribblings which became the TV series Telling Tales, and which I thought a bit of an indulgence, I found it no easier to write.
When the expected apotheosis didn’t happen, I kept reminding myself that time was short and I should behave accordingly, even enjoy myself, though how I wasn’t sure. I had no wish to travel or to see exotic parts of the world; the round-the-world odysseys that Aids sufferers tended to take were not for me. A neighbour in Yorkshire, diagnosed with the same condition and around the same time, had spent Christmas in Bali. I’d no desire to do that or anything much outside my usual routine.
Nor did the prospect of impending death seemingly improve the character. Always grudging in my appreciation, benevolence did not come to me in a rush and I was as wanting in magnanimity as ever I was: a good review for a fellow playwright could still make me grieve, football fever depress, the Telegraph incense, when all this, as I had understood it, was supposed to fall away. So there was none of the expected serenity, or the disengagement from the world: just more of the same.
Before I was ill, I had more or less completed a second series of the Talking Heads monologues, and even before the operation these were hurriedly put into production. But so far as future projects were concerned, plots came no easier nor did my pace of writing quicken, as I felt it was only fair it should. But cancer has never had much to do with fairness, or death either, so instead I began, I suppose, to tidy up.
I have kept a spasmodic diary since the early seventies, extracts from which I regularly publish in the Christmas number of the London Review of Books. The bulk of the diaries, though, remained untranscribed, many of them written in my not easily decipherable longhand. So another consequence of the diagnosis was that I put in hand the transcription of a quarter of a century or so of these journals in the hope that I would at least be able to correct as much of the typescript as I could while I was still around.
I’ve never envisaged publishing the diaries in their entirety, either in my lifetime or posthumously. They will require stringent editing, not because of the scandalous material they contain, but because so much of the stuff is tedious, complaining and workaday. A substantial endeavour when it was begun, Kathy Burke and Susan Powell, who have done the job, are now nearing its completion, confirming me in my assessment that much of it is banal, but worth doing for all that.
Unexpected, though, at the start was a sense of luck. This didn’t come out of any moral effort or a determination to count my blessings; I’ve never been very good at that. It came, I suppose, partly from not actually feeling ill, and so being able to enjoy the time I thought I had left, particularly with Rupert. Visits to Yorkshire, always a treat, now became much more so, and evening visits to the empty National Gallery, which had always been a privilege, were now doubly blessed.
As time went on, this unlooked-for sense of good fortune has tended to fade, though it has never entirely gone away, and helps to mitigate what is an habitually depressive temperament. Though I’m far from jolly, I suppose I feel, as I suspect many people do, that they have both had less than their due, but more than they deserve, and always, in my case, a lot of luck.
These would nowadays, I suppose, be called ‘positive feelings’, the sort one is supposed to try and generate in ‘the battle against cancer’. In my case, they didn’t come out of any striving, and always with misgivings that they are an elaborate form of self-deception, a front put up by the self to shield one against approaching pain and extinction. But I don’t think so.
Not long after I’d been diagnosed and operated on, I compared notes with a friend who was in the same boat and, like me, was in no current discomfort. She said how surprised most people would be to find that cancer isn’t a constant companion, and that for long periods of time one forgot one had it – or had had it – the uncertainty about the tense encapsulating the uncertainty about the disease.
Still, as I wrote in my diary in that unforgettable July: ‘This is a real bummer (and in every sense of the word).’
There were to be other blessings, though. I have never lived with anyone in my life, and I was so set in my ways (some would say spoiled) that even having someone briefly staying in the house I found irritating and disruptive of my routine. When I was diagnosed in 1997, Rupert Thomas and I had been together for five years but he had never moved in. Now there was no choice. I could not manage alone, or at least not until I was over the immediate effects of the operation.
That time came and went and, my convalescence ended, we found that living together by necessity we had evolved a way of going on and so more or less settled down. Of all the mercies – I would not say side-effects – arising from this affliction, this unlooked-for conjunction has been far and away the most blessed.
The condition seldom had to be named. Excusing myself from some speaking engagement, I would explain that I’d just had a serious operat
ion. If this didn’t do the trick, I added that I wasn’t sure how well I was going to be, and how soon. Only then, when the person concerned persisted, did I open up with the sixteen-pounder, and say, ‘Listen, I’ve had cancer.’
It always seemed unfair and almost cruel, so instant was the withdrawal and total the embarrassment.
I never at any point looked satisfactorily ill, and some weeks after I’d been in hospital I ran into a neighbour who enquired how I was.
‘I’ve just had an operation.’
‘Really? Well, you look very fit on it. I should have another.’
I didn’t enlighten her and, indeed, outside my own immediate circle, told few people that I had (or had had) cancer. This was for an assortment of reasons, chief among them the desire to keep it out of the newspapers. I had no desire to become a celebrity cancer sufferer, or to occasion supposedly caring articles headed ‘Playwright Fights Cancer’. There had been very little fighting so far anyway, though of course the mere question of facts wouldn’t deter such as the Daily Mail, the favourite trick of which is to pick up an item of news, illness, say, or the break-up of a marriage, and present it as if the person concerned had gone to the paper and wept on its ever-caring shoulder.
The Mail did, indeed, get wind of it, and a couple of times sent a reporter round who, having enquired of neighbours, then rang my bell. My face, like my father’s, is always red, sufficiently so to deceive and disconcert this nervous youth (‘I hear you’ve been ill?’). Despite having the door shut in his face, he must have reported sadly that I was still in rude health and so never came round again. The Daily Mirror tried the same tack, a young woman this time, ringing up to say, ‘I hear you’re fighting the battle against cancer. Would you like to tell us about it?’ The startled yelp of journalists when they realise the phone is being put down on them never fails to please.