Untold Stories
All I saw was a barefaced attempt at medical blackmail and a doctor trying to panic me into using his clinic’s doubtless expensive facilities. I showed the letter to my GP, who was less shocked than I was, I suppose because I had unthinkingly assumed that the practitioners of complementary medicine were more scrupulous than their orthodox counterparts. But why should they be? Besides, as my GP pointed out, even if the assumptions behind the analysis were correct, the benefits of intravenous as distinct from oral administration of vitamins were far from established.
To be told, though, that unless you abandon a course of treatment you’ve already decided on you are likely to die, hardly encourages; to engender such alarm and despondency in a patient the last thing a therapist, alternative or otherwise, is supposed to do. I did not go back to the clinic.
After a month or so’s interval in which to recover from the operation I began a course of chemotherapy, consisting of twelve sessions at two-week intervals over a period of six months. These involved a fortnightly visit to the London Clinic, where I would arrive at noon on Tuesday, have a blood test and then, with luck, be hooked up to the IV drip around three, and which would continue night and day until I left late on Thursday morning. The therapy was precautionary rather than intensive, and meant to mop up any rogue cells that had escaped the surgery and were still in circulation.
I imagined, as most patients I should think do, that I would lose my hair (something in my case that might be thought long overdue) but my oncologist, Maurice Slevin, thought that this was unlikely, and nor did it ever happen. Or it hasn’t happened yet. The other common assumption which I shared was that I would feel very sick but, conscientiously taking the necessary pills, I never did.
Still, it wasn’t enjoyable and, as time went on, the two days every fortnight came to seem unending. I was restless, un-sick, always bored, though the nearest I came to actual discomfort was the feeling of having a slight hangover. As I wrote in my diary, ‘It’s as if every fortnight I have to fly to Australia.’
I had never met an oncologist before and it was curious (and perhaps this is common too) how I regarded him as torturer rather than nurse, hunter more than healer, oncology, as I thought then, not a branch of medicine in which the doctor could expect to be liked. I was wholly wrong and came to look forward to Dr Slevin’s visits, and never felt other than encouraged and heartened. I think I was a dull case, though I make no apology for that. With cancer, a challenge isn’t what you want to be.
After my first bout of chemotherapy (I never felt matey enough with it to shorten it to chemo), I came home and wrote:
I note no ill-effects other than a persistent drowsiness. I keep feeling I ought to be more depressed or anxious than I am, but sitting outside in the shade and watching a blackbird, I’m not discontented … though I suppose it’s best to avoid that slightly frantic cheeriness that some sufferers from cancer have, and which I’ve always found a bit wearing and hard to fall in with.
Just after the first session, I got home and promptly cut my finger. At which point Maggie Smith rang:
‘Oh, I’ll ring back, darling. You need every drop of blood you can lay your hands on.’
I am aware, though, that in all this I am leaving something unsaid.
Until it came to it, I had always thought that in the event of serious illness I would always opt for the NHS. I have never been opposed to private medicine in itself, or seen any objection to the mixed arrangement whereby NHS hospitals have private wings for paying patients, provided, that is, that the treatment on offer in both public and private sectors is of the same standard.
In the treatment of cancer I think it is, and I was told that all the treatment I had, the operation itself and the chemotherapy that followed, was in every respect the same as I would have received on the NHS. The circumstances of the private treatment may have been more comfortable (though not always), but – and this is its main selling point – the crucial difference is that private treatment can be arranged more quickly, and that in my case was vital. If there was a queue, I jumped it. There is no gainsaying that. Someone else may have died as a result. I didn’t because I could pay, and this showed me up to myself.
Since, though, it also saved my life, I find it hard to regret, but it is not something of which I can be proud, the only extenuating factor that I paid for all my cancer treatment out of my own pocket. I have no medical insurance, believing, paradoxically perhaps, that it is the private insurance companies who have done most to damage the NHS.
But there were bleak moments, particularly when I was having chemotherapy in the London Clinic – if, say, they were late hooking me up to the treatment (which might mean paying for an extra day), when I felt I was the only patient in that institution who was actually paying his own way.
30 July1997. A scan at the Princess Grace. They fetch me out of the crowded waiting room, and I undress in a cubicle. Then, clad in a hospital gown, I carry my clothes along a corridor, where builders are working, looking for a vacant locker. There is no more privacy or comfort here than you get or expect in the NHS; just (just!) speed of access to the service. I begin to feel still more shame that I’ve chosen this road rather than thrown in my lot with the rest of the nation.
But there were droll moments, too.
29 August 1997. Another medical bill this morning and, glancing at it, I think it’s one I’ve already paid – X-ray, laparoscopy – it all seems familiar until I see that, unlike my bills (so far anyway) it ends with a fee for euthanasia.
It’s the bill for Captain Beaky, A.’ s cockatiel, who last week went into intensive care at the vet’s in Keighley. £98 including VAT.
Tedious though the chemotherapy was and long though I did to be away home at the earliest opportunity, I never wanted to be disconnected from the drip until the last drop of life-giving poison had gone into the vein, to be followed by the saline that flushed through the dregs. ‘This might be the drop’, I used to think, ‘that kills the cell that starts the secondary,’ and I’d probably have licked out the sachet if I’d been allowed to. It was hardly positive thinking, or even picturing the enemy as one is recommended to do, and nearer superstition than either. I suppose the closest I got to positive thinking was to regard the folinic acid as strengthening medicine. But it got me through and I seldom came away other than cheerful and happy to be home.
Had the chemotherapy made me feel sick I might have thought differently, but the worst I ever felt was mildly hung-over. As time went on, though, it became harder each fortnight to find a viable vein, and I learned to bless and appreciate those nurses (the nurses invariably better than the doctors) who could slip a needle into the arm without pain or fuss. In the course of my treatment, most of the veins in my arms were used up (though they’ve since rejuvenated themselves). It’s the addict’s predicament, and I began to have to have the cannula fixed into the back of my hand, which was both painful and restrictive. Still, I was lucky. The nurses told stories of patients so shot up that the only useable vein was in the penis.
After each session of chemotherapy I would come home and make a stuffed marrow. It’s not the most exciting of dishes, but what with precooking the rice and preparing the various ingredients, it became both a ritual and a celebration of life, a plain, wholesome and almost consciously life-affirming meal that we could polish off between us to mark the end of another treatment. And I noted in my diary, ‘It still seems to me strange how unblighted so much of the time manages to be.’
While in no pain, though, and little discomfort, as time went on I found the chemotherapy sessions deadening and increasingly wearisome. This was less to do with the treatment than the circumstances in which it was administered.
The London Clinic is not a lively institution, nor a particularly convivial one. Time was measured out in the steady drip of the folinic acid and the slow deflation of the sacs of fluid sagging on the stand. One woke in the night as a nurse came out of the darkness to shake the sac and shine a torch on the
tube to check the drip of the liquid across the optic and through the cannula into the arm. Sometimes it is a known face, or the nurse I had seen before I went to sleep, but more often it is a stranger whose name I do not know. There is not much acquaintance here. And if the nights were long, the days seemed scarcely less so. Though I could pass the time by a trip down the corridor, trailing my drip-stand, I seldom did, as there was never anything to see.
14 September 1997. In an armchair an old man in a dressing gown watches the coming and going of the lift, his son in a burnous gazing moodily out of the window at a blank wall. Glimpsed occasionally through open doors are motionless figures laid on their beds like premature effigies, locked in a private world of illness and solitude where, though the television is always murmuring, nothing diverts.
But for the bed-wide doors it might be a superior hotel in Coventry, say, or one of those featureless establishments on the edge of an airport. Nothing disturbs this privileged sepulchritude. Life is elsewhere.
With two and half days in hospital every fortnight for six months, in all I spent nearly a month there and not once did I get into conversation with another patient.
I am not a gregarious man but it was in every sense too high a price to pay for privacy. There was no fellowship in suffering (not that I was suffering, particularly) but how should there be? In free hospitals the sick tend to make common cause, if only with a cheap cheerfulness. It’s salutary to see patients in worse nick than you are, if only because pity drives down self-pity. But in private hospitals (and it’s their selling point) you seldom see the other patients at all. And why should you? Rubbing shoulders is what you are paying to avoid. ‘If this is the lap of luxury,’ I wrote, ‘I don’t care for it much.’
Glimpses of my fellow patients were rare enough for me to write them down:
2 October 1997.10.15 a.m. and 356 units left to be pumped through. With luck I may be out by three. I seldom see any of the other patients, but this morning, while the nurse is here, the door is open, and I see a man wheeled past, my age, I suppose, but difficult to tell because he’s egg-bald and on his way to or from whatever treatment has made him so. Then, this afternoon, as I’m leaving, I see another man older than me sitting out in the corridor with his wife. He’s also bald, but his head is mottled with bluish-grey marks as though tattooed. The sight of these two fellow patients depresses me and makes me think beyond the immediate relief and pleasure of being outside again, to what may be the ultimate outcome and when.
I hail a taxi on the corner of Devonshire Place where a young man in pyjamas and dressing gown has been wheeled out onto the pavement to take the sun, his legs still in their white hospital stockings. The unselfconsciousness of him touches; it’s something I wouldn’t do, I think, unless I was fairly far gone, which perhaps he is. No one seems to be with him. He’s just sitting on the corner of Devonshire Place in the afternoon sun.
When Alec Guinness came to see me he was surprised and even disappointed that I had not lost my hair, understandably perhaps, in someone who had been bald since he was a young man. He was not wholly convinced that my hair remained my own until he had contrived to tug it to make sure. This was not entirely a joke.
12 December 1997. Let out yesterday at two, this episode (no. 10) the most wearisome so far, and I imagine episodes 11 and 12 will be more of the same. I’m running out of veins now and the nurse who fixes the cannula tries the right arm, then the left, and has given up on both until, by chance, I bend my right arm and she is overjoyed to discover a plump, hitherto unpunctured, vein in my forearm. Part of the dreariness of the process is the taste in the mouth, or the absence of same. Then, too, there is the over-employed air of the London Clinic, no windows ever open, each breath (which, such is the expense, could probably be individually costed) a breath of the well-to-do sickness that pervades the place, where even the crockery (beige with white flowers) turns the stomach.
Towards the end of the programme my boredom got to such a pitch I even began to devise improvements to the machinery.
Tethered to the infusion pump one often has to go to the lav or move about the room, and for this it can be unplugged, working in the meantime on the battery. However, the lead invariably gets caught up with the intravenous tube in the arm and a lot of time is wasted unentangling it.A simple improvement would be to make the flex automatically retractable, as is the case nowadays with vacuum cleaners; and this would eliminate the tangled flex problem straight away. I even think of writing to the manufacturers to suggest this, except that I see from the label they are a Belgian firm, and the pumps themselves are manufactured in Japan.
Medical fees apart, the price one paid for board and lodging at the London Clinic was not much different than that for staying at the Connaught. Unsurprisingly, though, the food did not compare and meals were dull, tasteless and old-fashioned. Paying for them out of my own pocket perhaps made me more critical than the average patient, who was likely to be putting it down to insurance, and unlikely to be here for the food anyway, and eventually I wrote to one of the board of trustees, complaining in somewhat exaggerated terms:
One is paying what one would have to pay at the Connaught and getting food which would disgrace a boarding house in Fleetwood. No effort is made to tempt the appetite, and the London Clinic’s notion of a salad is what one would be given in Leeds in 1947, namely a piece of lettuce, a slice of tomato and another of cucumber. It deserves a place in a museum of gastronomy.
With chemotherapy, one is always being asked if one is nauseous, which, thankfully, I have not been. The only time I have come near to nausea is when removing the dish-cover of my supper tray.
The nurses assured me that their food was even worse, but the irony of crusading for better conditions for some of the richest patients in the world was not lost on me, and eventually I took to having most of my food brought in, a practice I’d thought confined to the inmates of Turkish prisons.
When, later on, I spent time in UCH and the Middlesex, both NHS hospitals, I was reassured to find the food, though of course free, was of approximately the same standard as in the private sector. There were fewer frills but it tasted (or didn’t) much the same as most institutional food tends to do. But there, at least, I wasn’t paying through the nose for it.
The final session of my chemotherapy ought to have been at Christmas 1997, making one wonder if this would have involved any festive accompaniments (the holly and the IV) but it was put off until the beginning of January, and this marked the end of my treatment. Now all I had to do was wait and come in every three months to be examined, thus becoming in the course of the next four years a denizen of that quartier clinique that lies east of Marylebone and north of Oxford Street. Sometimes it was Harley Street, but on two occasions, both quite dramatic, I was taken into UCH and the Middlesex. More often than not, though, my visits were on my bike, as it’s only fifteen minutes from home, and most of them were without event. There were, though, as there had been already, various low points.
In the course of chemotherapy a considerable volume of liquid is passed intravenously through the body, only part of it folinic acid, the rest saline. The passage of this out of my system seemed, in my case, quite slow (I tried to imagine it staying and doing some good) but this retardation had to be catered for. Never feeling particularly incommoded by the treatment, I would often go home to Yorkshire the following day, but on one occasion en route I was taken short and pissed my pants. It was the first time I had done this since I was a small child, and though the relief was so blessed it was almost celestial, I found the episode unexpectedly depressing. It was on King Lane in Leeds, and I have never passed the spot since without remembering it, one of the grid references in that private topography of memory, embarrassment and romance that is laid over the map of Leeds.
Incontinence featured at another low point, the first of a series of scans that punctuated my treatment. At the time I was filming the second series of Talking Heads at Twickenham, and had to come aw
ay from the filming of one of the monologues when it was not going well. The sense of stillness, which to my mind is essential to the effectiveness of this form, had begun to give way to a busyness which betrayed an anxiety about the bleakness of the set-up. I wasn’t directing the piece myself, but had already insisted on retakes, without managing to make it any less mouvementé and I had the feeling when I came away that the director and the studio were glad to see the back of me.
There were retakes at the hospital, too. I had to drink a good deal of water, or radio-sensitive squash, so that my bladder and bowel would show up properly on the screen. The retakes here were themselves a cause for anxiety (what had they spotted that they needed to see again?), and as I lay on the table, being passed in and out of the scanner, I became more and more desperate to piss. In the event, I managed not to, and in that sense there’s no point to the story, but the wretchedness I felt, which must be part of the ordinary commerce of such a place, remains vivid. As it was, I was sure that the film they had taken (and retaken) did not bode well. In this, happily, I was wrong. The film I had left at Twickenham was probably better than I had imagined, too, though there was no retaking that.
Another low point concerned the rogue trader and banker of Baring’s Bank, Nick Leeson, not a character with whom I had much sympathy, or thought to have any connection. Shortly after he was gaoled in Singapore he developed cancer of the colon, the onset of the disease causing much comment in the press and, I would have thought, an undercurrent of satisfaction. Certainly, there was much speculation in the papers about colonic cancer in general, and on Leeson’s chances of survival in particular, journalists gleefully quoting the odds.