by Lynn Barber
Until David went into hospital, he was always the believer, I the sceptic. I thought he was too trusting of the doctors and their do-or-die certainties, their neat percentages. I noticed as the months wore on, that all these supposedly straightforward treatments carried some collateral damage – no one warned him, for instance, that after his splenectomy he would have to inject himself to prevent clotting and take antibiotics for the rest of his life. But then – inexplicably – as soon as he went into UCH I stopped worrying entirely. The fact that there was a whole wing devoted to bone-marrow transplants, the fact that the doctors and nurses all seemed so cheerful and competent, made me think, oh, it's perfectly routine. I remember urging Rosie, who lived in Brighton, not to bother visiting David in hospital too often, because we would need her more when he was back at home, convalescent and bored. My attitude was: David has to go through a hellish six weeks but then he'll be fine.
And in fact his first week in the bone-marrow unit wasn't hellish at all – it was quite good fun. He had a minor operation on the first day to insert a Hickman line in his chest, and thereafter he had to spend a few hours every day on a drip, but in between he was free to come and go. Good foodie that he was, his first excursion was to Sainsbury's to lay in proper provisions – smoked salmon, prosciutto, figs. He asked me to bring his sketchbooks and painting things and to drive him to the secret garden in Regent's Park where he loved to paint. For several days, his only problem seemed to be boredom, so I organised a rota of friends to come and entertain him, and one night we even went out to a party. Again, when David told friends that he was in the middle of having a bone-marrow transplant, they simply didn't believe him – Geoffrey Wheatcroft said, well, he was in the middle of having root canal treatment which was far, far worse. The whole mood those first few days was one of almost gaiety. The only thing that brought us down to earth was when David had to sign a consent form that said he understood there was only a 50 per cent chance of recovery. Fifty per cent! All we'd been told before was that there was a 10 per cent risk of his dying, from which we'd assumed that there was a 90 per cent chance of recovery. What happened in this other 40 per cent that wasn't dying and wasn't recovery? David, typically, signed the form without asking.
By the Friday, I noticed, David was beginning to sound a bit high, talking loudly about ‘airhead nurses’ and laughing too much. On the Saturday, he rang me very early, breathless with fear, saying he had not been able to pee in the night. I dashed over to UCH and found him almost gibbering with panic, unreachable, until the doctor came. The doctor explained that he was taking in so much liquid through his various drips, it naturally caused prostate problems but they would finish after the transplant. On Monday, he had a slight temperature and was told he must not go outdoors any more; on Tuesday, he complained of diarrhoea and aches and pains. He was in a strange, impatient, grandiose mood, often ‘too busy’ to talk to me. Instead, he gave me his hospital diary to read which was a wonderful account of a Proustian social whirl occasionally interrupted by this huffy wife who bustled in from time to time to spoil his fun.
On Thursday, 17 July, they started the transplant. Charles came to the ‘blood room’ to have his bone marrow ‘harvested’ and had to sit with his arm perfectly still for four hours, which can't have been much fun. But Charles was very good-humoured about it, and then our friend Eric Christiansen turned up and he and David and Charles sat and talked about history while the nurses transferred Charles's blood to David. ‘Don't you want to stay and watch?’ they asked, but I couldn't wait to get out of there. Instead, I dashed to the Fresh Art Fair and bought a painting. It was the first time I had ever bought a painting without consulting David, and I felt oddly guilty, so much so that I didn't tell him. He was the art expert – it was as if I had taken a first, premature, step into independence.
The next day David looked absurdly well, with pink cheeks like Charles's, and we joked that perhaps he would turn into Charles and start wearing Boden clothes and talking about his ‘chums’. But he was getting weaker all the time and that weekend he was declared neutropenic, meaning he had no immunity from infection. There was a big sign on his door saying visitors had to wash their hands and don a plastic apron – his brother Luke looked hilarious in his motorbike leathers with this titchy yellow apron stuck on the front. David by now was finding it hard to eat – he had no appetite and his mouth was sore with ulcers. He surprised me, though, by saying that he was never bored – I think because he was beginning to withdraw into a private, drugged, world.
By the end of the third week, Sunday, 27 July, David's mouth was so sore they were giving him morphine and he was eating only smoothies. His hair had started falling out and there were clumps of it all over his pillow; his hands and ankles were puffy; he was quaking with fever and barely coherent. Rosie, who hadn't seen him for a week, was horrified by the change in him. On Monday, 28 July, David rang to say he was being transferred to the Middlesex kidney unit and I had better come over and pack his stuff. What! Why? Nobody had even mentioned his kidneys before but apparently they had stopped working and he had to have dialysis. The doctor admitted that kidney failure was rare and they didn't know why it had happened – it was the first time I had seen one of the transplant doctors looking rattled. David was whisked off in an ambulance while I stayed behind to pack. I thought I was meant to pack just an overnight bag but the nurses said no, I had to take everything, to vacate the room. It sounded as though they were washing their hands of him.
By the time I got over to the Middlesex and found the renal unit, David was already installed in a rather bleak room which I was appalled to see had no neutropenic sign on the door and nurses and porters seemed to be wandering in and out without washing their hands. I thought maybe I should stay the night, but David said very strongly I should leave – he seemed hostile and irritated by everything I did. So I went home and rang Charles and Luke and the daughters to tell them what had happened. I went to bed thinking, ‘I could wake up a widow.’
But no – David was still alive in the morning but looking ghastly, with a bleeding mouth and puffy eyelids and no hair at all at the back. He was highly agitated and said a Chinaman had come in the night and stolen his Hickman line, and I thought, Oh God, he's barking. But later, when the consultant came round (with a Chinese doctor) he explained that they'd found his Hickman line was infected – hence his septicaemia – and removed it in the night. And there was a nice black nurse, Steve, who seemed able to calm David down – I certainly couldn't. He hooked David up to a dialysis machine which chugged away and sent David to sleep.
That first week in the renal unit, David was demented much of the time, sometimes paranoid, sometimes peremptory, often telling me off for being stupid. He had a theory of déjà vu he kept trying to explain – ‘This is now and the loop only finishes when I'm dead’ – and would get furious when I failed to understand and start again – ‘This is now’ – until I wanted to scream. Later, I found pages of the same stuff in his diary. One night, apparently, he told Steve the nurse he had a son who had HIV – where did that come from? He also boasted to Steve and other nurses that I was a famous writer. Sometimes he thanked me effusively for being so ‘caring’; other times he lambasted me for being so thick. I was grateful that Theo accompanied me on most of these visits and managed to ‘humour’ David when I couldn't – but then she would often break down in tears when we left the room. In one of his few moments of clarity, he said that he didn't think the bone marrow had taken. I said it was too early to know – they told us it would take two weeks – but privately I began to share his pessimism. Everything was going wrong.
By this time, I was having terrible dreams, barely sleeping at night but then crashing out at odd times during the day. Everything seemed out of joint. The papers were full of the terrible story of Dr Kelly, the MoD scientist who committed suicide. And it was so hot, day after day, the temperature rising relentlessly through the 80s into the 90s, it never seemed to cool even at night. Mor
eover it was a strange, muggy, misty heat, more like India before the monsoon than an English July. Another evil portent was that a huge dog fox had taken up residence in our garden and kept strolling along the walls as if patrolling the ramparts, which meant the cats would come crashing through the cat flap and pee in the house. We'd often had foxes in the garden before, but never one so big or so bold: I thought of him as Death and feared that one day he would come through the cat flap and take over the house.
Whenever I visited David at the Middlesex – and I was dutiful, I went at least once and often twice a day – I would start plotting to leave almost as soon as I arrived. I had my excuses – the meters that needed feeding, the phone calls that had to be made, the garden that needed watering (oh God, to think I put the garden first) – and was shamed one day when Steve, his lovely nurse, said that he could arrange a parking space for me. There were special ‘compassionate’ free parking spaces, he explained, and he would get me a chit for one because he knew it was so expensive parking in central London. I blushed and blushed because of course I could afford any amount of parking spaces. I just hated being in the hospital, hated being ‘the patient's wife’, hated the fact that I didn't know what to talk to David about – that when he tried to talk seriously, about dying for instance, I brushed him off, and that when I tried to tell him about everyday things, or friends who had called, I sounded like the silliest sort of airhead. He would ask politely about my work – what work? I was doing almost nothing. And I would ask about the nurses, and what had happened in the night, and how were his bowels. I was very aware that I was behaving wrongly, dashing in and out. Proper hospital wives sat like pylons at their husband's bedside, only occasionally moving to get a cup of tea. They stayed there all day, maybe even all night. David told me – I think because he sensed my guilt – that it was because they were from out of town and had nowhere to go in London, but I also felt it was because they were proper wives, the sort who stayed at their husband's side all their lives. Going down in the lift one day, one of them said to me, ‘All we can do is give them our love’, and I bared my teeth in a snarl. I just couldn't do this ‘caring’ lark – it made me feel inadequate and cross. I felt cross with David too, for deserting me.
But gradually, towards the end of the week, David seemed to come back. He was still very irritable, very querulous, by now institutionalised I suppose, but not, thank God, talking about his theories of déjà vu. Steve shaved his head so that there were no more depressing clumps on the pillow, and in fact he looked good with a skinhead. He started trying to read the papers again and do easy crosswords – oddly, though, he refused to let me bring his Walkman, and said he'd entirely lost his taste for classical music. At first he didn't even want any books but then I brought The Poet's Tongue and he started reading poetry again. One day he said his brain had gone, he couldn't remember all the poems he used to know by heart, he couldn't even remember ‘The Rime of the Ancient Mariner’. I said, ‘Oh, I'm sure you can – “It is an ancient Mariner,/ And he stoppeth one of three”’ – and David went on from there, steaming effortlessly through however many million verses. When the children were small David was always reciting poetry on car journeys – he could keep going all the way from London to Cornwall – but when the children were older they would howl, ‘Oh, not “The Rime of the Ancient Mariner”!’ So he gradually stopped doing it and it was strange to hear him again after all these years. One of the nurses came in and was so amazed she went to fetch another nurse – they seemed to think reciting poetry was some supernatural gift like speaking in tongues.
On Sunday, 3 August, we were told that David had produced a few white blood cells – the transplant had taken! I rang Charles and Luke to tell them to crack open the champagne – he was on the way to recovery. There was still the small problem of his kidneys – he was having dialysis every other day – but the doctors seemed confident that his own kidneys would ‘kick in’ spontaneously in a week or two and then he could go home. Home! He had now been in hospital a month but it seemed more like a year.
When he stopped being demented, he became sentimental, often tearful. He talked about Richard's death and how much he missed him. I knew he was thinking about his own death, and wanting to talk about it. But for some reason I always blocked him, and became very brisk. One day a Cypriot haematologist came to see him (many of the top haematologists are Cypriots because Cyprus has an endemic blood disease, thalassaemia), and David asked where she was from and she said Famagusta and he started reminiscing about his happy childhood holidays on the beach at Famagusta, with tears in his eyes. And again I froze, as always annoyed by talk of that idyll, his childhood, which I always resented. I hated the idea that the beach at Famagusta still represented – more than half a century later – the happiest days of his life. I wanted to wail, ‘But you were happy, I know you were happy, at least twice more than that, when Rosie and Theo were born.’ Another time, he tried to tell me – again with tears in his eyes – that he was very grateful and touched by my ‘loyalty’ and I winced that he used the word loyalty rather than love. But maybe loyalty was the best I could do. I remember my father once angrily saying that I only came to visit him and my mother out of a sense of duty, and I snapped, ‘Well, what else do you want?’ and he said ‘Love.’ So simple really. But it was my father (‘Fine words butter no parsnips’) who had taught me to equate duty with love.
From then on, David got visibly better and stronger every day. I took him for little walks, first just to the end of the ward, but then down to the hospital garden – I had to buy him a sunhat because it was still boiling hot. The papers were saying the temperature would soon be over 100; right across Europe, people were dying from the heat. I bought a rocker sprinkler for the garden and my big treat, every evening, was sitting outside with a glass of wine, listening to the swish, swish of water pattering on leaves. The dog fox had gone.
David was declared no longer neutropenic so it was safe to have visitors and I became his social secretary again, arranging a busy rota of friends to keep him company. He said he wanted to get dressed and go outside, in the street, and the doctors said fine, so I brought his clothes from home. He was upset to find his feet were too swollen to fit into his shoes, and I had to buy him some horrible Velcro hiking sandals. On Friday, 8 August, he announced that we would go for a proper walk to see the Butterfield church, All Saints Margaret Street, that he loved. So we tottered along – him in his floppy sunhat and hideous sandals, me moaning as usual at having to walk so far, and to a church of all places. Of course I found All Saints repulsive – High Victorian, smells and bells – but David had expected that and teased me for my disdain. Then we went for coffee in an Italian café in Charlotte Street. I was nervous the whole time but he was confident and talking eagerly about his plans for the future – he wanted to paint bigger abstracts, have an exhibition. We saw the consultant when we got back, and asked what to expect – he said probably another week or two in the renal unit and then maybe a few days back in UCH, but David would certainly be out by the end of the month. I began to feel slightly panicky at the thought of having to nurse him at home but David said don't worry, if he needed proper nursing we'd hire someone – he knew I'd never make a Florence Nightingale. He was so happy and confident, it was as if he was now in a position to comfort me, to laugh at my failings.
On Saturday, 9 August, we'd arranged that Rosie would visit him in the morning, then our good friend Lesley Hoskins would take him lunch. Theo would drop by in the afternoon and I would visit him in the evening, when he had finished dialysis. So for me it was a whole free day and I went swimming at Highgate Ponds and planted Nicotiana plants and generally felt more relaxed than I had for weeks. In the evening I sat in the garden with the sprinklers on – it was the hottest day of the year – waiting for David to phone to say his dialysis was over. When the phone rang about seven I expected to hear David's voice. Instead I heard the ward sister saying that David was ‘not responding’.
&nbs
p; I drove to the hospital in half my usual time, scything through traffic, and found a team of medics jammed into David's room. He was lying on his side, twitching, his hands oddly clenched. He made no response when I held his hand and called his name. The medics said they thought he'd had a haematoma – a bleed to the brain – and was paralysed down his left side. They said the scanners at UCH were out of action because of the heat and they would take him to Queen Square Hospital for a scan. They said they would have to put him on a ventilator to move him. Meanwhile I rang Theo, who by chance was meeting friends nearby, and she came clicketing up to the ward in her kitten heels and lovely party frock and burst into tears when she saw David.
We said we would drive to Queen Square, rather than go in the ambulance, and went out into the pea-soup night, getting lost. Arriving at this vast, completely deserted hospital, with no sign of life apart from two security guards, we wondered if we'd come to the wrong place. But no, the guards said they were expecting an ambulance, but it would come to the back of the building not the front, so one of them led us through miles of empty corridors – the lights were on, computers whirring, but no people anywhere – and we waited in what seemed to be a children's playground (we found out afterwards it was the back of Great Ormond Street hospital) for the ambulance to arrive. At last it came – and we saw David bound to a stretcher, completely motionless, with a huge elephant tube over his face.