Authors: Lynn Barber
Tags: #Journalists, #Publishers, #Women's Studies, #Editors, #Personal Memoirs, #Women, #May-December romances, #Women Journalists, #Biography & Autobiography, #Social Science, #General
He was told to spend the two months between his splenectomy and transplant building his strength and putting on weight, which he happily did. A week before his transplant we went to a friend's son's wedding in Northern Ireland, and David was on brilliant form, singing, joking, dancing the night away. When he told friends that he was going into hospital for a bone-marrow transplant they simply didn't believe him. The following Sunday we drank champagne and sat in the garden till the sun set. It was the start of England's longest, hottest summer for a century – and David's last day at home. Next morning, Monday, 7 July, I delivered him to UCH.
The sad thing, reading my diary, is how the months of diagnosis and waiting and indecision before David's transplant tended to push us onto separate paths. In the diary, I find myself increasingly describing him like ‘the patient’ – noting his odd moods, his sudden furies, his ‘twitchiness’, but seeing these as symptoms rather than real feelings. Inevitably he began to seem self-obsessed, always talking about his illness, and the next hospital appointment. And the appointments came thicker and faster as the months went on, throwing up a whole cast of doctors who were only names to me – Panos, the Cypriot haematologist he revered; Miller, the urologist he loathed because he stuck his finger up his bottom; and the all-powerful MacKinnon, who decided whether he could have the transplant or not. I never met any of them – David never suggested that I should come on these hospital appointments and nor did I. I don't know whether it was in his mind but it was certainly in mine that perhaps if I accompanied him, it would remind the doctors that he was older than he looked and therefore less eligible for a transplant. Also we both agreed that I would tend to say the wrong thing, ask awkward questions, as I always did – though in retrospect that is exactly what I wish I had done.
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. Moreover 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.