Patient Read online

  I lay down on my side on a hard, low bed and pulled the baby-blue cotton blanket under my chin. It had a silky seam along the top. I thought of being a child again, curled up in the boxroom that later became my mum’s study at our old house in Woodlands Road, and days off school with tummy-ache, waiting for her to call the school and tell them I wouldn’t be in. A mother was in the room with her child. I wanted them to stop talking. The pain was bad.

  A doctor came for me. I had to walk the last bit to the scan. I could hardly put one foot in front of the other. The doctor got impatient. They laid me down inside a big white doughnut and took X-rays as I moved through a fraction of an inch at a time. It took half an hour. Lying flat on my back was virtually impossible. I would nod off for a minute or two as my body shut down against the pain and would then come round again, disorientated and lonely. They kept coming out from the booth to push my knees down.

  I was wheeled back to my room and vomited the radioactive orange juice all over the basin. Two young student nurses just stood looking at me pitifully from the doorway, like kids. Kneeling there by the basin, I felt I was adapting already, like a creature moving from sea to land, evolving a new identity. And I was sealing myself away. My sense of time and space was shrinking. The invisible thread that had been tying me to home and the desperate desire to get out had slackened. I became interested only in making things bearable for the next twenty minutes or so. I looked for moments of stillness, a subtle shift in posture that would bring minutes without discomfort. I looked forward to simple, basic things – dry, clean sheets; the feeling of leaning back on freshly plumped-up pillows; the moment of unwrinkling my brow. I found myself thinking of kidnap victims and enforced confinement, but felt no resentment or bitterness. I stopped doubting the seriousness of it all. I only wanted to understand, to focus my attention, and to learn the doctors’ language and to be of help.

  That Friday two doctors from the London School of Hygiene and Tropical Medicine came down. They confidently assured me that, in spite of no conclusive proof, I was bound to have a parasitic infestation. Although one parasite had already been discounted, further tests in Glasgow would confirm it, they said. I lay on the bed talking to a room full of people. I felt silly talking while lying down, felt I ought to sit up at least, but my belly was tight with fluttering cramps. I felt sure they were wrong, but how could I say it? The doctor who talked the most had a full beard and a ‘Save Africa’ badge on his lapel. They were all eager to take me over to their hospital, which had no facilities for an emergency. I really thought they didn’t have a clue.

  That night I went into a nosedive. The pains had turned into superhuman garrottes. I developed bad diarrhoea and would reel out of my room and into the ward 100, where the stench of shit and the trapped summer heat made me gag. The twelve hours that followed are hard to recall now, except that I remember asking the night staff to refill my hot-water bottle. The hospital wouldn’t provide hot-water bottles, and so my mum had left my room around 9 p.m. in search of one and ended up in a taxi stopping at all-night chemists until she got to the Edgware Road. She got back with the only one she could find – a child’s one, with a furry rabbit for a cover, called Bedtime Bunny.

  I had started hiccuping. I couldn’t stop. It went on into the next day and evening. I was so exhausted and sick from it I had one of the nurses call a night doctor. He was young, by chance his father had been a doctor who had written a paper on hiccups and he suggested I might try a drug used on mental patients to close the flap leading from the digestive tract to the stomach. I was so desperate I took it. It sent me to sleep for a couple of hours, but when I woke up I struggled to sit up and began hiccuping again.

  Over the weekend I was virtually delirious with pain and diarrhoea. My pulse was fast and sickening in its intensity. I was hiccuping all day and night for hours on end. I remember nothing clearly. I see myself coming and going, Tracey beside me, no time, no real time, just flat agony and snatched sleep. Tracey says I was being given painkillers that were designed to obliterate. I don’t remember taking them. I can see Sheila standing in the doorway from time to time.

  The surgeons arrived on Monday evening. The doctors still hadn’t come up with a concrete diagnosis; it was time to simply cut me open and see what was going on. When the surgical team arrived I couldn’t even lie flat for an examination. I just cried and cried, huddled on a chair by the basin. A diagnostic laparoscopy to be performed by Prof. Wastell was planned for the next day. Tracey asked if they could do it straightaway. They said it could wait until morning.

  Two

  Who is that? It is Tracey. Where am I? I don’t know this room. I am warm. I am drunk. Who is that at the end of the bed? It is my mum. Why is she here? These pillows are soft. They must be the softest pillows. I am probably in America. Am I an angel? No, I am a bird. I am circling above. I am in a tree house at the top of the tallest tree in the widest forest. Everything is below me. There is my bedcover. The bed is like the countryside – fields and cars and little people. I am looking through a camera obscura, like at the beginning of A Matter of Life and Death. Why is Tracey so small? An image at the end of a telescope held up against my eye the wrong way. I cannot speak. I must make my eyes wide and full of questions.

  I had lines running into the main artery in my neck, and a little clothes-peg on my finger that checked my pulse. A ventilator tube was plumbed into my mouth and throat. My upper body was wired up with electrocardiogram suction pads. I had a catheter in my cock, and lines and cannulae in my wrists for saline. Sunk deep into my chest was a food pipe. The last moment I remembered was an image of someone bringing me an operation consent form late at night. It seemed like weeks ago. I couldn’t speak. All I can remember is drifting. Tracey spoke.

  ‘Your bowel was bad,’ she said.

  I am circling above. I am part of a painting. Tracey and Mum are in the painting too. We are characters fanning out from the bed.

  ‘You’ve had a lot of surgery, but you are getting better.’

  I must be in America. We must be on tour. I am abroad. I must have collapsed abroad. No, I must be in the hospital for Tropical Medicine with the man with the beard and the ‘Save Africa’ badge, who said I had worms. I’m drifting again. Nobody loves me, everybody hates me, they think I’ve got worms …

  ‘You are on Intensive Care.’

  I am on Intensive Care? Intensive Care. I told them so. How glamorous. But I feel no pain. Something has been done. I am special and understood now.

  Tracey had been given a little board with all the letters of the alphabet on it. ‘You must tell us what you want. You must point to the letters,’ she said.

  I spelled out ‘E-n-g-l-a-n-d?’

  Tracey nodded and said yes.

  I felt suddenly intensely lonely. I spelled ‘S-a-d’, and Tracey started crying a little bit. Then I spelled ‘S-h-e-i-l-a?’

  ‘Sheila’s coming,’ she said.

  We were all quiet for a moment. Like a painting. My mum started speaking.

  What is that my mum is saying? I cannot hear her properly. There is music playing somewhere. My ear hurts.

  I spelled out ‘I w-a-n-t t-o h-e-a-r …’

  Tracey jumped in before I could finish. ‘You want to hear us talk more? OK, we’ll talk some more.’

  I shook my head. It was a tiny movement. I tried again. My finger traced the letters. ‘I w-a-n-t t-o h-e-a-r m-o-r-e …’

  Tracey wouldn’t let me finish again. ‘You want to hear more …’ (Her eyes flashed round the room.) ‘… more music,’ she said. ‘He wants to hear more music. Turn the music up, someone.’

  No, no, no …

  I shook my head again. I spelled out slowly. ‘I w-a-n-t t-o h-e-a-r m-o-r-e t-h-r-o-u-g-h m-y l-e-f-t e-a-r.’ My ear was folded into the pillow, muffling the conversation. Fogged up with drugs, I seemed unable to send a message to my neck to move my head enough to free it.

  Tracey and my mum roared with laughter. I could hear relief and the release
of tension. Tracey laughed again and rolled my head sideways a little way before resting it back on the pillow. I could hear the music more clearly now. It was Bonnie Raitt. Why was it playing? I knew that song. It was making me cry. I was spinning away again, thousands of feet above. Tracey took my hand. We were both crying.

  Sheila came. She knelt by the bed and took my hand with her head on one side. Her eyes were full. She said nothing.

  Even if your relative seems not to react to you, it is likely that they will be able to hear, and will be aware of their environment. It may seem strange to talk to someone who is not able to answer you, but this can help to comfort your relative, as can holding their hand. You will find lots of equipment. This enables staff to monitor the person closely, to give drugs and fluid and to help with breathing. The nurse will explain the equipment to you. There will be one nurse who will be with your relative at all times. Never feel that you are in the way. (ITU Relatives Leaflet)

  Heavily sedated, I had been asleep for four whole days. Prof. Wastell had cut me open as planned, but had seen something so bad at first he’d simply stapled me back together again and sent me up to ITU (Intensive Care) to pause for thought. My small bowel had virtually rotted away inside me, and probably had been doing so for several days. The whole area, crippled by blood-vessel damage, had been severely infected with gangrene and peritonitis, poisoning my blood and threatening fatal perforation. Inflammation and the instability of the dead and matted tissue had made immediate access and repair almost impossible. Instead Dr Mackworth-Young, a consultant rheumatologist, and his immunology team had been called in straightaway to try to calm the area down with drugs overnight, to enable surgery to continue the following day.

  It seems my immune system had been flipping out in some kind of massive overreaction. The eosinophilic warning signals had been right. Huge numbers of white-cell antibodies from my immune system’s defences had been stimulated into attack by something unknown – an invading allergen or parasite possibly – but instead of their being regulated and then flushed out as usual, my bloodstream had been teeming with the harmful wrestling complexes they were forming, and they had settled in the tiny vessels and connective tissue surrounding my small intestine. As they’d raged on, blood vessels had become chronically irritated and inflamed and then consequently destroyed – a process known as vasculitis – and three-quarters of the small intestine (innocently caught up in the battle) had simply died from interrupted blood supply. It was as if a massive tourniquet had been tied around it.

  My immune system, now aggressively triggered, had seemed unable to shut itself down and, more alarmingly, had begun to produce additional antibodies that had started to no longer recognize my own tissue. They had been destroying it, as if it too were the invading enemy. I had in effect become autoimmune. I was attacking myself.

  Immediately following the exploratory operation, Dr Mackworth-Young had prescribed intravenous steroids to try to reduce the inflammation, antibiotics to fight the infection and a serious drug called cyclophosphamide that blocks cell growth in an attempt to temporarily stamp out my frenzied white-cell and antibody production and effectively knock out my immune-system activity. Hard-wired into a life-support system, my chances of surviving that first night on ITU had been put at 25 per cent.

  The next day I’d been given a day’s rest. I’d been showing signs of stress. Another operation straightaway had been deemed too risky. Although I’d been technically stable, if critical, the biggest threat at that stage had been a spontaneous unstoppable perforation of the weakened bowel wall that would have fatally flooded my bloodstream with septic fluid created by the rotting tissue.

  The following morning I’d been taken straight up to theatre for a long operation. The Prof had removed large sections of the dead bowel and sewn the ends together as the drugs worked to stabilize the infection and damp down the rampaging immune system. Back on ITU, however, I’d shown no signs of improvement. My pulse and temperature had stayed high, signalling a continued struggle with the infected tissue. Tracey had stayed day and night. So had my mum. Killing time. Waiting. Reading. Watching the monitors above my bed. Walking slowly by the river. Shopping pointlessly. Tracey says at night my face was like puffy candle wax, bloated by drugs and creased by the ventilator straps.

  It had been clear that more was going to have to be removed. The following day the surgical team had gone in again and in another laborious operation had taken out another three or four feet of the necrotic bowel. At last I began to show signs of relief. Even as I was being wheeled back to the unit, Sheila, who had collected me, says she registered my fever and pulse falling in the corridor. The surgeons had, however, reluctantly now removed more than ten feet of my small bowel. What this would mean for my future, no one would predict.

  The drugs had played their part too. Infection and inflammation had been contained, and the rioting immune system had at least been temporarily quelled. And so, with the remaining bowel stabilized and a cease-fire holding, the anaesthetists had reduced my sedatives and I’d opened my eyes on a Saturday afternoon on to a room I’d never seen before with no memory of any of this.

  The afternoon they brought me round, after Tracey and my mum had sat with me with the letter-board for a while, I had an epidural – a spinal injection – fixed into my lower back to effectively paralyse me from the waist down and reduce pain following so much abdominal surgery. The grogginess had lifted. Before the epidural was put in, the nurses had been asking how I was feeling, did I feel pain, and at first I had felt nothing; but later I started to notice heat. My abdomen felt hot, and then hot and sore and pounding, and within an hour I started to feel shocked and frightened. I had a morphine pump. Grasping it in the hand like a computer-game joystick, I could give myself metered doses of painkillers. I pressed it all the time, but the system would only allow one pulse every ten or fifteen minutes. I remember I constantly expected to raise the bedclothes and see blood, with the dressing soaked through. My mind filled with images of gunshot wounds and blast victims and cauterized landscapes of still-smoking bomb craters. The anaesthetist came with the epidural. Nurses rolled me on to my side. I wanted to die. Tracey was there. The mattress was too spongy. The anaesthetist couldn’t find the right spot. I felt his fingers pushing against my vertebrae. A nurse’s hand was firmly on my shoulder.

  I cried out, ‘Is it done? Is it done yet?’ I didn’t know what was being done. I didn’t know anything, flinching from the gentlest touch. I wanted to be in open summer fields, a sky above me, Tracey running in front, out of real time.

  ‘Lie still. Lie still,’ the anaesthetist was saying.

  The mattress cover was like waterproofed tent material against my face. I was staring into the corner of the room. Later I remember rolling back and expecting to feel something sharp or something snapping off, but instead just lying there waiting for my legs to go numb.

  Tracey left around nine. I couldn’t sleep. I just stared and stared at the clock on the wall. I felt unique. I felt bored. Drugs were searing round my body. I felt as if I could throw back the sheets and walk out of there. I asked Mike, one of the nurses, to give me something to help me sleep. He said he wasn’t allowed to. An hour later he came back. I felt like Gulliver under all the drips and feeds. I didn’t dare move. I thought if I moved my stomach would split open. I said I had to sleep. He had a tiny needle on a grey cardboard tray in his hand. He leant over and emptied its contents into the arterial line running into my neck, saying, ‘This should help.’ I was about to speak again, and then seemed to look up to find three hours had passed.

  They took me back to theatre to remove the last of the patches of bad bowel on the Monday morning. I was distressed and scared like a child who can’t get on a plane. They put me under quickly, even before I left the unit.

  I am five. I am asleep, half-asleep, in my room, a big room at the top of the house but divided in two by a stud-wall partition with glass windows along the top. The wall takes drawing-pins
very well. I have two film posters from my mum on my wall – one with Clint Eastwood and Lee Van Cleef as cowboys. Lee Van Cleef is a strange name. My half-sister sleeps on the other side of the wall, but she is away. I am half-asleep but I can sense light flickering, butterfly light. I can smell burning – a burning like the paper twizzled tapers my grandma makes for the wood fire when we go away sometimes in the summer holidays. I can hear a pit-a-pat, a crackling pit-a-pat. It must be raining on the flat roof above. I cannot wake up fully. I dream on. The light still flickers. Yellowy flickering light. The smell is stronger. The rain must be really coming down now. I think I can hear it crackling in the huge copper beech in the garden outside.

  I open my eyes. I don’t understand. The wall at the end of my bed is on fire. My poster for The Good, the Bad and the Ugly is full of flames. Faces are burning. The dry paper curls and spits. Smoke rolls up the wall and then strangely down again, like the plume of an exhaled cigarette. I sit upright, as if awakened by an electric charge. I can see the door. There are no flames near it. Only my wall seems to be on fire. I stare at the smoke. It now seems to run in a channel where the wall meets the ceiling, like the trail from the stack of a travelling steam train. It comes towards me, unfurling and rolling like a wave. I feel myself close my mouth. I am gripped for what seems like an age. The rolling tube of smoke. The blast of flame and paper at the foot of my bed. My room is filled with shadows and light. I jump out from the sheets and I am rushing from the room with my hands covering my head and down the stairs and I crash my fists against my parents’ bedroom door. ‘Fire! Fire!’ I am shouting.