Patient Read online

  Two doctors arrived. One sat on my bed, the other stood. They looked like they’d been brought in from pressing work. They each wore blue pyjamas and a shower-cap. The one standing had on white plastic clogs. Are these people doctors? Is this what they wear? The doctor sitting in front of me had a hot, damp face. He looked straight at me. He seemed kind. His eyes were intensely concentrated in the moments he was talking. He asked for pain descriptions, a little history.

  After they left, a young nurse came with a clipboard and a Biro. She had a little questionnaire for me. She wrote slowly in fat, rounded, teenage handwriting, touching the corner of her mouth with the tip of her tongue as the pen hit the paper. ‘My name and background’. ‘My date of birth’. ‘My self-image’. ‘Was I afraid of dying?’

  By the evening the initial moment of crisis seemed to have passed. I was now on the NHS. It was a Friday. I irrationally wanted to go home. Hospital had frightened me. It had all got too serious. I wanted control back, but I agreed to stay on the Coronary Care Unit (CCU) for observation over the week-end. The doctor in the pink shirt at the London Clinic, Dr Sutton, was also the unit’s consultant heart specialist, and I was being looked after by his team. I sat up in bed in grey marl shorts. I wouldn’t lie down. I tried to look fit. I was sure nothing was wrong with my heart and that the sooner I could convince them and get away the better. I remembered how the homeopath had talked of the body exorcizing illness, bringing poison to the surface before it can recover. I thought if I could put this hoax scare behind me I could sort out my asthma on my own again.

  On the third day Tracey arrived in the morning with Eileen, our manager at the time. Wimbledon was on the silent TV up in the corner of the room. I had slept very badly and was starting to get bad indigestion, belching, acid stomach and severe backache. I thought a walk would do me good. More tests had already seemed to prove that the cardiac signals had been a false alarm, and, although I was giving very strange blood results, the pleuritic pains in my chest had calmed down again. Doctors were now guessing at gallstones or a gastric ulcer – something less critical. The nurses were understandably reluctant to let the three of us go out. I was still a patient on CCU after all. I smiled as winningly as I could and argued I might well be discharged on Monday. It was a quiet Sunday. They said OK.

  We took it easy down the corridors and into the lift. Down in the garden, though, I suddenly felt strangely weak. It was an unusual fatigue that swept over me, from somewhere deep and central. It was like a bucket from a well coming up dry, as though my body was finally saying, ‘No more now. It’s time to stop pretending.’ I had to sit on a bench. I wanted to sag forwards. Pigeons waddled across the path. A leaf fell. After a few minutes, Tracey and Eileen took my arm and we all walked slowly back to the unit in silence.

  That night the pains in my back moved to the front. A young surgeon was sent to see me. It was late. He was tired. He flipped me over and kneaded my belly. I’d been constipated for two or three days. He said he could feel crap in my bowel. I slept badly again. I couldn’t lie on my front.

  The next morning the unit was like a beehive. Dr Sutton’s houseman was just back from holiday. He had a lot of catching up to do. Rushed off his feet, he took blood from my arm ham-fistedly. I snapped at him. I was taken up to another floor for an endoscopy, to check for ulcers. A fibre-optic snake was passed down into my stomach under sedation. Back on the unit I was garrulous and loud under the effects of the drug –

  ‘Ha ha ha. I woke up in the middle. I woke up in the bloody middle. Are we back already? Which is my bed? Here? OK. Not this one? Don’t let that bloody bastard back with the needles. Fat git. Who’s in charge? You? Well, don’t let that fat git take any more blood. I woke up in the middle, you know. Lie back? Why? I am lying back. I felt the tube scraping around in my stomach. It’s a bit warm, isn’t it? Is it hot in here, or is it just me? Can I go home? Can I go home today? There’s nothing wrong with me. They’ve got it all wrong. Don’t tell me to be quiet. Just keep that fat one with the needles away from me. He doesn’t know anything. Ha ha ha.’

  The endoscopy found nothing irregular, but my blood counts were still coming back with big abnormalities. Marked signals were being given out that my body was under some kind of attack. A group of my white cells, the eosinophils, were showing up in numbers far greater than one would associate with the allergy responses of a regular asthmatic. Moreover, as my asthma seemed to have mysteriously subsided over the past week, the doctors were particularly puzzled and quizzed me some more. I told them I had recently been to Japan, where on a previous trip I had suffered severe food poisoning. This would tally with my results. A sleeping parasite reawakened or worm infestation could also cause such hypereosinophilic activity. It was decided I should be moved on to a general ward for tests and observations. A parasite specialist from Immunology would see me.

  They moved me on to Marie Céleste Ward. I was sitting on a temporary bed in the corner against the wall in the packed room. It was in the middle of the meal round during the same evening. The air reeked of meat and boiled potatoes. The TV was on loud. We all had to raise our voices. The doctors were uncertain as to their next move. This upset me. They decided to move me into the side-room – partly out of compassion, partly for fear of contagion – and to run some more tests. They left. Tracey ate my dinner.

  The hospital was due for closure within a matter of months and the building was in decline. My side-room was shabby. The blind lay broken on the floor; dry Sellotape was stuck to the frames where someone had tried to fix it back up. There was a yellow sealed bucket for used needles under the sink, a paper bag for a bin. The windows were coated with the film of car exhausts. That night I barely slept. I watched the staff in the offices across the road finish work, shut down computers, turn off lights, and then later watched the lights all come on again in the same offices as the night cleaning staff arrived. The fluorescence would flicker across my room.

  When my mum first came to see me the next day, she turned to the window and sighed dramatically, ‘How depressing.’ I realized that nobody who came to see me in those first few days really knew what to say. I remember Toby, my half-brother, his wife, Yvonne, and the children standing at my bedside – little Luke unhappy and disorientated in Toby’s arms. I can’t remember them saying anything, nor me.

  Rumours had inevitably started spreading already – heart attack, mystery virus, stress. Simon, my eldest half-brother, rang. He never rang. He lived in Scotland. I knew that my mum must have told him. I took the ward phone. He jumped straight in –

  ‘Ben, what are you playing at? Isn’t it time you packed it in?’

  ‘What? What do you mean?’

  ‘You know. The pop thing. All that lifestyle nonsense.’

  ‘Simon, what are you talking about? What do you mean “lifestyle nonsense”?’

  ‘Oh, come off it. You’re only twenty-nine. You’re killing yourself. You must be crazy.’

  ‘What?’ I was speechless. ‘You think I’ve had a heart attack, don’t you? Who told you this? I haven’t had a heart attack. They know that much at least.’

  ‘Yes, but it’s all related. The music business. You should take it easy. You’re still young.’

  ‘But it’s got nothing to do with the music. I’m not overworked. I’m fine. Well, not fine but …’

  ‘What is it then?’

  ‘They don’t know yet. I’ve got strange blood readings.’

  ‘Well, you should take it easy anyway.’

  His wild guesses were incensing me. The noise in the corridor was distracting. I found myself pressing the receiver harder and harder against my ear. I wanted him there, in front of me, to explain properly, but he was in Edinburgh and somebody wanted to use the phone. I was angry. The music business. Pop lifestyle. Who did he think I was? Some flamboyant flake gasping after fame and money, who had driven his car into a flotation tank and then had a seizure on the way to the bank? I suddenly found myself hating his adopted snobbery.
I hung up. He once told mum how he thought ‘the South’ was just full of phoneys, and he was getting out.

  Ultrasound and blood tests came and went, all of them blank or inconclusive. No ulcer. No gallstones. The results of the parasite tests were going to take a while to come back, but I still treated each morning like the one on which I would be discharged. I would get up ignoring new cramps in my gut and, instead of taking breakfast off the morning trolley, I would shuffle along to the ward kitchen when no one was looking to help myself to cold milk straight from the fridge, hot toast, cereal. I’d take them back to my room and set them up on the table by the sooty window and imagine that eating out of bed with a breakfast fetched by myself was a sign of my good health and individuality and that I wasn’t dependent on the hospital yet. I thought it would stimulate my bowels and after a good shit everything would be all right and I could go home. But fatigue would overtake me and I’d lose my appetite and I’d have to climb back into bed.

  At first I couldn’t understand why doctors weren’t called every time I was in pain. The staff nurses were kind and the student nurses young and keen to help, but both were untrained in diagnosis and when I’d call one of them with my call button they could offer no answers and I would get fractious and upset. Nobody told me that, except in times of emergency, the doctors only came round twice a day – once in the morning, once in the evening – and that only they could take big decisions. I had to learn the pace of the days.

  One morning I got up and took a shower by padding across to the women’s ward across the hall, and then called Tracey saying the doctors knew nothing and I was going to discharge myself and come home. Right there and then. She was calm – just told me to wait till she got there. By the time she arrived I was back in bed, bad again.

  I imagined the nurses I passed in the corridor saying, ‘There’s nothing wrong with him. He should be at home.’ One night, when I couldn’t sleep and I was free of pain, I even crept back along to CCU and sat up with a couple of nurses, chatting and laughing in hushed voices, telling tales about my family, enjoying an audience, trying to be attractive. They were drinking tea. The only light was cast by an Anglepoise on the desk. I felt as though I’d slipped into a girls’ dormitory after lights-out.

  Over the next couple of days the abdominal pains started to become acute. I would have to kneel on a pillow by the bedside, my stomach pressed against the side of the mattress for comfort, my hands against my forehead, my body rocking back and forth. Sheila, the ward sister, would come in and stroke my head, make me drink Gaviscon, and stay until the pains had gone. The pain would come in bursts – sometimes slowly building, sometimes swift, but always lasting twenty minutes or so. I could feel my blood pressure drop, my face cool, greyness.

  Sheila’s presence reassured me. Sheila by the bed. Sheila kneeling next to me. Sheila in the doorway. Over those first couple of weeks her talismanic properties took on immense significance. She was tall. She wore blue. She was just a ward sister who lived in a flat with a tortoise and a husband who ran a pet-shop, but when she was on duty Tracey would call for her in my moments of intense pain or despair. I believed she really cared more than the other nurses. I believed she would make things better. It was never anything she said. It was something in her face. I thought she knew hospital secrets. When I heard the handle turn on the door to my room and she came to help me up off the floor and back into bed, or to hold my hand, to give me drugs, to stroke my brow, I wanted to be a child, to be safe, to be loved, to hide in the folds of her clothes. I wanted to have Tracey reassured, to have her told heaven and earth were being moved. Outside my room, in the flatly lit corridor or in the nurses room, I know she took my mum and Tracey aside and gave good news as even-handedly as she gave bad, and then consoled and listened. I felt she was keeping our heads above water, pulling us to the bank, her hand cupped under our chins.

  David Lindsay, the senior registrar from CCU, took me up to Echo-sound to finally discount any cardiac problems. For the first time I asked for a wheelchair. I couldn’t face the walk. The woman on the echo-sound machine gave me a representational image of my own heart. They saw nothing unusual. When I came down again I gave the picture to Tracey. David said the machine was very popular with doctors in the week running up to Valentine’s Day. I thought the picture would be something I’d want to see again, but I don’t like to think of it now. The blurred, grainy image makes me think of uncertainty and doubt, of the body as an unfathomable, mysterious place and the repository of too much that we don’t know. It is like images from unmanned submarines that photograph deep ocean trenches, or from satellites that capture the dark craters and dust plains of outer planets, unknown and worrying, only it has my name printed on it.

  My dad finally came to see me on his own. Mum had put him on the train, and he’d taken a taxi from Paddington. Like everyone else, he didn’t really know what to say. He would clear his throat and plant his hands on his knees as if in readiness to speak, and then just sigh and grip my arm instead. The hospital freaked him. He followed us down to X-ray and sat forlornly on a bench next to Tracey while I went in. A gaunt man in a black towelling dressing-gown was coughing violently in the corridor. My dad has a weak chest. I could see him getting restless and unhappy. It was busy, and there were a lot of people about. When I came out, Tracey said my dad had left.

  I got back to my room and was told there was still no diagnosis and they wanted a piece of my bone marrow. They gave me the same drug for the bone-marrow extraction as I had had for the endoscopy. A man just came the next morning and stood by my bed with a steel trolley and a big needle. One of the nurses held my hand.

  ‘I’m not asleep yet. I’m not asleep. I can feel it. I can feel what you’re doing. Don’t start. Don’t start yet. Please wait. Is it a big needle? Just wait a minute. What are you doing now? I am relaxed. Lie still? But I’m not asleep yet. Don’t do anything. Why are you smiling at me? What’s funny? Who’s there? Is Sheila there? No, please don’t even do a trial run. Hold my breath? Breathe in and hold, two, three, four. I can feel it. I hate it. I hate it. I can’t help it. Yes, I am comfortable. Stop. Don’t let him start. Wait. Please wait a minute. What do you mean it’s all over? D’you mean you’ve finished? You have? But I’m not asleep yet.’

  All the tests were drawing blanks. My eosinophils meanwhile seemed to be infiltrating multiple organs, and in astronomically high numbers. Eosinophils are not thought to be dangerous in their own right. They are white cells that appear in times of intense immune-system activity, usually where allergy or parasitic infestation is involved, supervising and relaying messages to other white cells from the body’s defences. They are an easily detectable marker of invasion in regular blood tests, but as my asthma had disappeared and initial parasite tests showed nothing conclusive nobody knew if the eosinophils were a freakish but benign presence or signalling or even contributing to a still hidden disease or infection somewhere else in my body. It was like a phoney war. I suggested the homeopath’s tablets might be working. They said they thought it unlikely, or at best coincidental. They were sure the remission of my asthma was part of a wider problem. If not, why the eosinophils? The term ‘multi-system disorder’ was used for the first time. I knew what was coming next. The HIV counsellor would come by later. I didn’t want counselling.

  The counsellor was a woman. Blue jersey crew-neck; striped shirt with collar up. She was articulate and gentle –

  ‘This is all in the strictest confidence. Nobody will know your name. When the test is done down in the labs you will be a number, that’s all. Can I just ask you if you have ever had an African girlfriend?’ She knew what I did for a living and I imagine she envisaged a lifestyle. Unconventional. Generic rock ’n’ roll. Occupational hazard.

  ‘No. Never.’

  ‘OK. Now normally the result would have come back within twenty-four hours – obviously you want to know one way or the other – but as it’s Friday it’s going to be Monday. Sorry. Will you be all right
over the weekend?’

  I wasn’t scared. I just felt constipated.

  Over the weekend I worsened, with hourly crippling cramps, heartburn and sweats. Sheila gave me an enema. The little tube was slipped up my arse while I lay on my side on a waterproof sheet. She fired off the liquid and I lay there for a few moments, unimpressed. Then my guts started tingling. Low down. I rolled off the bed and sat on the commode. A few hard stools and pellets shot out into the pan in a jet of water. It felt inconclusive. My abdomen then went into spasm. I doubled up and fell forwards on to the floor. Sheila helped me back into bed. It felt like someone was pulling drawstrings tight around my guts.

  On Monday the HIV result came back negative. Somebody suggested eosinophilic gastroenteritis, and the tests started to get worse. Under another sedative a long biopsy needle was inserted into my liver while I gibbered and whimpered away clutching on to a nurse’s hand. I thought things like this happened in other rooms, under bright light with doctors in gowns, not in your own bed with the bedside lamp angled down on to the site for illumination by a man with his sleeves rolled up.

  Blood was now being taken twice a day. Some of it was examined in the hospital; some of it was being sent to Scotland. While I was sedated for the liver biopsy the houseman had taken my blood and had tried to be clever, leaving a butterfly needle in my arm so he could use it again that afternoon and save me having to endure a fresh one. When I came to, my forearm had puffed up and there was nobody around. I screamed at the nurses and the needle was taken out.

  I was taken for a CT scan, to take cross-sectional pictures of my gut. Following several trips to Ultrasound my regular porter had become a shy, bespectacled German called Gert. He was polite, quick in his movements, and told me he was over here trying to better his English. I saw him reading a book that seemed to be called British Etiquette. Did he push trolleys and wheelchairs with a full knowledge of cutlery placements and appropriate headgear for Royal Ascot? We sped along the X-ray corridors. To prepare for the scan, I’d been made to drink radioactive orange juice and told to lie down for half an hour. Gert left me in a waiting-area.