‘It’s never a straight path,’ the doctors said.
They’d seen this before. Normally, things worked themselves out. But Nicola was becoming tired, I could tell. She had less energy for movies or books. And for the first time, she was starting to feel scared. One night she called me at eleven. A nurse from the ward next door had been sent to look after her. He wouldn’t listen when she asked for sickness medication – he said it wasn’t written on her form. He wasn’t experienced with transplant patients. She didn’t feel safe.
I got in the car and drove to the hospital. Nicola was distressed. The nurse was an older man. He became defensive when I asked – as tactfully as I could – if her medication was under control. I walked through the corridors, looking for a doctor. Eventually someone came, a quietly spoken young Sikh, who read her notes under the anglepoise lamp.
‘You can trust this nurse,’ he said softly. ‘I’ve known him for a long time. He knows what he’s doing.’ His voice carried conviction. He talked calmly through the treatment, spoke to the nurse and adjusted the meds. When he had gone I sat with Nicola for a while, in darkness, hoping she’d get some rest. Outside, orange light glinted on bricks. Her dressing gown made a dark shadow on the back of the chair. It was like the first night she spent in hospital. I didn’t leave until she fell asleep.
Another week passed, and still Nicola’s lungs closed up imperceptibly, like the slow squeezing of a fist.
I texted from work as often as I could. Her replies always tried to reassure me. She’d discovered memes and sent me a heart. Three ducks in a row was a private joke to reward the list of completed tasks I’d sent through: laundry, shopping, her lunch cooked. At home I washed and ironed headscarves soiled by sweat. Visiting, I sat in a chair, trying to stop my eyes glancing to the temperature gauge. Inexorably her temperature rose every six hours as the paracetamol wore off and the next spike gathered. Sweat blurred her forehead. Her hand, when I held it, was warm.
And gradually her breathing became more laboured. One evening I came from work to find her lying in bed with a plastic tube in her nostrils. I wasn’t panicked; neither was Nicola – she’d been given oxygen when her lungs were infected before. We listened to air whistling in the plastic tube. After a while the doctors switched from the tube to a mask. A nurse in dark-red scrubs squeezed a new machine into the room. It had a water tank to moisten the oxygen and stop her nostrils drying out. Nicola smiled at me through her mask and waved her hands. The nurse in red came from the Intensive Care Unit, we were told.
She came again, later in the evening, and this time brought an ICU doctor with her, a burly man with bare forearms. Suddenly we felt closer to the medical coalface; he brought with him a whiff of blue lights and emergency, and his manner was blunter than the gentle academics in the Transplant Unit. He filled the room, too big, an intruder.
‘Maybe it’s an infection, maybe it’s something else, perhaps GvHD. The truth is we don’t know,’ he said abruptly.
Graft versus Host Disease. We’d been warned of it in the run-up to transplant. It meant the donated cells had attacked the host as an enemy. We didn’t want this to be GvHD. That would mean something had gone wrong with the transplant, our lifeline to safety. We wanted it to be an infection which – surely – they could cure. Another day passed. Nicola didn’t seem to get worse. At lunchtime I rushed home to cook her lunch and brought it in a box to King’s. But she couldn’t eat it, and threw up after a few mouthfuls.
It was the last meal I cooked her. That night I read aloud to her from an old crime novel a friend had given us. I left the book on Nicola’s window sill with her glasses, the bag with her tapestry in it, the DVD for Bleak House. Back home I found a text on my phone: Debussy and Chopin. Great way to end the day. Sleep well my darling xxxxxx. At 02.06 I woke up suddenly, aware my phone had been ringing. There was a missed call from the hospital. When I rang back, they told me Nicola’s breathing had got worse; they’d decided to take her down to Intensive Care.
The streets I drove through were quiet, as if the city was in mourning. Tarmac shone orange under the streetlights. A burglar alarm winked over a shop. I parked in the empty car park. Further down the road, an ambulance stood with its doors open, a red blanket on the gurney inside. There was no one in the entrance lobby. I wasn’t sure where Intensive Care was, but on the corridor leading to the Transplant Unit I met Nicola and her doctors coming down: two porters slowly pushing her bed with a drip swaying over it, a nurse carrying a bag.
Her headscarf had come off. All her hair had gone with the last chemo but one forelock clung bravely on, dark against her pale skin. Her head looked small on the pillow.
She squeezed my hand. ‘I’m fine.’
Nicola was always a wonderful patient, wanting to reassure the doctors, to be no trouble. They wheeled her on, the bed slightly askew on its castors. We turned left at the lifts; a nurse held open swing doors; we rolled down a ramp. Inside the ICU, they pushed her to one corner of a long room framed with beds, and asked me to wait outside. I sat by a desk where a nurse tapped a keyboard, her face lit by the computer’s glow. The door behind the desk was the room where Nicola would die, five weeks later.
‘Would you like a cup of tea?’ the nurse behind the desk asked.
I said I didn’t want anything, looked at the lino floor. We’d been in Intensive Care before; Nicola would be cured again. I thought of Pin Mill, of walking along the river, past silver water screened by trees; or resting on a log, talking. Nicola’s frail body getting slowly stronger; walking a little further each day.
At last a nurse came down the corridor. ‘You can come and see her.’
Nicola lay in one corner. They’d put her sponge bag and glasses on a shelf. In the bed opposite her an old man arched his back, muttering. Around us I could see rows of patients. There was a desk where doctors and nurses quietly worked. Calm purpose filled the ward. Although I didn’t yet know its name, we had arrived in the Frank Stansil Critical Care Unit, a place we would grow to love. We would get to know Carly, the nurse who looked after Nicola that first night. Months later, she came to Nicola’s memorial. We were in the place where Nicola would die.
The consultant had a gentle, precise and high-pitched voice, sounding words as if he were playing an instrument. His hands were large and white.
‘We’ll see how she does in the morning.’
‘I’ll stay with her.’
‘We have visiting hours.’
‘I need to be with her.’
‘Call in the morning and you can talk to the matron.’
They left me alone with her to say goodnight. We whispered so as not to disturb the other patients. I found a hand under blankets and wires, and squeezed it. Nicola seemed reassured to be in the CCU. Last time everything had turned out fine.
And she remained as strong as ever. ‘I’ll be fine. You need to get some sleep. Go home.’
‘Are you sure you’re OK?’
‘Of course I am. Go home.’
Nicola was the thread that tied my life together. She was its tide, the bedrock under its soil, its dawn and dusk, its animating light. Our home was silent and cold, as it is today. Everything that mattered to me lay in that bed. She was my home.
I squeezed her hand one more time and left.
In Rome, I’ve been thinking of that first night in Frank Stansil. I’ve been thinking about my years with Nicola. I suppose I must be damaged by what’s happened, but I don’t feel damaged, just tired.
I’ve tried to think about my future without her.
I imagine that after this earthquake I’ll build again among the ruins – a dwelling house in one corner of what was once a palace. I’ll use its broken walls for shelter, like an old man in a shed, the caretaker. The past will be littered about me: columns, a plinth that once held a statue. I’ll be a guardian of memories. Mounds in the earth will mark out walls, corridors, rooms only I’ll remember. I’ll recall a fountain, now dry, when water gushed from the mouth of a vas
e held by a little boy; I’ll remember a painting of a girl playing with a cat. I’ll cut weeds, chase crows away. At night, in my memory, I’ll close my eyes and tell myself it was true: there was once a palace here. Opening drawers, I’ll find scraps and odd relics: perhaps the keys to an old car, or the blanket one of our children lay on. So much has been lost. My head is a museum to a forgotten way of life, housing memories in rows, with a basement filled with shards that don’t quite fit.
I don’t feel sorry for myself, I feel shocked. I’m like a tree struck by lightning. Only spring will show whether leaves sprout again. I’m like Rome, a city of ruins with a living city around it.
Sitting outside a bar I scroll through photos of Nicola on my phone. I watch us dance again beside her bed. Zooming in, I can almost see her smile. This New Year has helped. Rome is so old, it makes me feel it’s not just me that’s tired but the whole world, built over, destroyed, and built again. Yesterday I went to an old church whose columns were gathered, during the Dark Ages, from different ruined temples. A building constructed from fragments of ruined buildings. And it struck me that my life with Nicola was the same. We didn’t invent happiness but learned it, pilfered it from lives around us. Cities aren’t built from scratch; no more was our life together. Our life was old before we lived it. Love was old before we fell in love.
Our story has been told before and will be told again: a man and woman fall in love and have children. One day the woman gets lost in the forest and doesn’t return.
A friend said, not so long ago, ‘You’ve lost so much.’
All stories start with someone getting lost.
9
There was a picture of Frank Stansil outside the ICU. Martha, Joe and I used to wait in the lobby for hours, looking at it, while nurses and cleaners bustled around inside. Everyone was too busy to answer the door. Phones didn’t work in the Frank Stansil Unit. We made calls on the broad staircase that led to the lobby and even there, ear pressed to the only window, the outside world seemed remote, its inhabitants talking through static like astronauts.
We were the world, and in a way, it’s still like that. I don’t think I’ve quite left the room where Nicola died; her skin warm when I touched it, taut over her skull; the mole that appeared on her right temple after she got sick; her wide mouth; and the machines that couldn’t save her fallen silent as if in sorrow. All our lives together we’d found havens from where we could see everything, like ships on the sea. That’s what our marriage was. Frank Stansil was the last of them, and despite its being ugly, the curtains faded and the lights fluorescent; despite the blue plastic chairs stacked in one corner, and the rows of monitors coloured beige; despite all of that, it was the right place for Nicola to be.
It was a beautiful place to die in. Frank Stansil was the most humane place I’ve ever known, a place of kindness and hope, of learning, skill, wisdom. Outside, the Brexit vote was a month away; demagogues urged people to ignore experts. By contrast, Frank Stansil was a living embodiment of enlightenment, a community of the sick and the generous, of the knowledgeable and those who needed their knowledge. Machines stood in the corridors like an extension of human reason, fashioned to capture our bodies’ turgid malfunctions, to analyse, cure and heal. I’ve never, before, been to a place where expertise was so natural, or so respected; or to a place where people were treated so equally, levelled by their own imperfections.
The next day, the consultant, a new one, took me into his office. Nicola was very sick. Her lungs, he said, had been ‘horribly damaged’. It was impossible to say why. His office was a room in which many people had been given bad news. I asked questions whose answers should have been reassuring. Could lung damage heal? It could. Was there still a prospect of long-term cure? There was; it would take a long time. The consultant’s manner was less reassuring than what he said. It was as if he was trying to impress on me what I already knew – that Nicola was very ill. Perhaps he mistook my optimism for a refusal to face the truth. I knew perfectly well Nicola was in danger. But he didn’t know what it was like to go through a year’s cancer treatment. We were used to danger; it didn’t seem as frightening as before. And he didn’t know Nicola: that, to her, there was never any point in contemplating defeat. Hope mattered more than anything, and we still had hope.
They needed a better scan, ‘to see what’s going on’. He used the analogy of lungs smoke-damaged after a fire. I pictured soot and inflammation, like the photos we were shown at school to put us off smoking. They needed to send a camera down her throat, but they couldn’t do it yet; she was too frail; she had to be stabilised first.
‘She’s been sinking for a few days. You can see the pattern.’
We hadn’t seen it; we’d been too intent on watching her temperature. At her bedside a new nurse, Anne-Marie, cheerfully took control of dosages, monitors, pills. I was in the way.
‘You should talk to the matron about visiting hours.’
In those first few days in Frank Stansil I read the insistence on visiting hours as bossy hospital regulation, and fought it. It took time for the penny to drop: we all needed time out. Families and carers needed to recover as much as the patients did. We all had a race to run.
In the next bed a man lay with his eyes closed. They’d been trying to wake him for days. His wife stood over him. Sometimes she played a tape of their daughter’s voice: Daddy, it’s me.
I sat in the corridor while they changed Nicola’s sheets. She was cheerful that first morning, exerting herself, once again, to beat illness with sheer spirit – and to protect me. Since dawn she’d been deluging me with texts: R u awake? Xxxxx … How about avocado mozzarella and tomatoes for lunch … And shortbread … I am completely wrapped in wires … She texted a photo of her pyjama’d legs with cables trailing over them. Are you like a puppet with strings? I texted. More like an escapologist, she replied.
I texted a photo of Martha sending her a hug, one of my favourite pictures, a daughter’s love and kindness caught on the screen. Our friend Nettie was staying from America. I sent a snapshot of them having breakfast. People sending you waves of love. Marcus called from the Roundhouse. I’d spoken to Joe on the phone the night before. Now I telephoned Nicola’s mother to let her know about the move. I’ve got a personal nurse! Nicola texted, and a bit later, Impressed! Prof Lake and her team just been to see me … About 100 doctors floating around … Come back ASAP!!
I emailed friends:
A quick update: Nicola sailed through the transplant itself, and all the early signs are that’s gone really well. The last fortnight’s been a bit harder, though. She’s been hit by an infection which is proving very stubborn. They’re currently keeping her stable in critical care, which is giving them a chance to investigate further, so they can target whatever’s going on. As you can imagine, Nicola is being incredibly brave and stoical. On the plus side, they’re now in a position to work out what’s wrong, and already have some good thoughts about what they can do to sort it.
Sedation was the doctors’ proposal to stabilise her. They needed to relieve her tiring lungs. The consultant explained it to us: they would put her to sleep, then ‘intubate’ her – pass a tube down her throat to help her breathe. It shouldn’t be there for long, he said, perhaps 24 hours. The long-term aim was to wean her off oxygen support, get her breathing fully for herself.
It was afternoon by then; I’d been there all day. Martha was with us. Nicola looked from the nurse on one side of her bed to the consultant on the other, then to me and her daughter, standing at the end.
‘Sounds great,’ she joked. ‘Send me to sleep and I’ll wake up well.’
Of course we knew she was in danger; so did she. I asked if we could have a moment together. We didn’t say goodbye – that would have been admitting how near we were to the edge, to darkness, to silence. We were sure she’d get better. Martha kissed her and went out. I held Nicola’s hand. We didn’t say goodbye, because that would have been too final; but we managed to, somehow, i
n our own way. That was the moment we told each other, in words we’d used so often before, but were never stale, how much we loved each other; what our life together had meant. I love you, repeated again and again. She said, You’re everything. I said, You’re everything. I went out. The team was waiting in their green scrubs. Martha and I went for a walk – down the stairs and out through the atrium, along the corridor, into the bustling street. People walked past, unknowing. The gates of the park were open. Beyond the weeds, the leaves of Nicola’s favourite tree spread over the grass, casting shade. We sat on the log. You’re everything. They were the last words she ever spoke to me, or to anyone.
Something went wrong. Nicola’s body teetered on the edge, fragile, vulnerable. If it had been a machine, red lights would have been flashing, systems shutting down. Not even the doctors knew how damaged she was.
The aim was for them to carry out the endoscopy – put the camera down her throat – after a good night’s sedated sleep. Then – we’d mapped the road ahead – they’d know how things were, track the infection to its source, find the right drugs – and all would be well.
I went to work, attended meetings, glanced endlessly at my watch. I pictured Nicola’s eyes closed, sleeping quietly. As soon as I decently could, I left and cycled to King’s. I half-fantasised they’d have her awake again, the star patient. Instead, she lay on the bed, shrunken. Her lips were parted, gripping a thick plastic tube. Her hands hung limp.
A Moment of Grace Page 12