A Moment of Grace Page 4
‘Four courses of treatment,’ the doctor in A&E had said. ‘Normally. You need to allow six months.’
Six months. It sounded forever, at the time. We lived in a world where things happened fast.
We asked Dr Clay about it when he visited that evening. Could it really take six months?
‘Cancer’s hard to predict,’ he shrugged. ‘Everyone’s different.’
Neither of us could get used to losing control over our own lives, but his message was not to count the days. We had to let cancer tug us away from the shore of everyday life. Drifting on a raft, without rudder or oars, all we could do was revolve on the current and watch the shore recede. It was a difficult lesson for two people who liked to be in control, but in the days that followed we realised we had no choice. Overnight we slowed from endless activity, from days of work and evenings seeing friends or going to shows, to the slow monotony of illness.
I cancelled our holiday in Greece. I emailed everyone to postpone our anniversary party, without mentioning cancer. Nicola’s only rhythm was the rise of the sun on St Paul’s dome each morning, and the halting sequence of doctors’ visits. Our days were punctuated by things beyond our control: unpredictable tests, results that came slowly and incomprehensibly. Fog fell. We found ourselves cocooned in it together.
In our new life, everything repeated itself: the hospital door’s slow revolve, the wait for the lift, the ringing of the bell outside Samaritan.
I learned the ritual of protective clothing needed to protect Nicola from infection as chemotherapy dismantled her immune system. Outside her room, each day, I washed my hands, tore a blue plastic apron from the roll above the sink, and drew rubber gloves onto my fingers. Only then could I tap on the door and go in. Doctors visited at unforeseeable moments. We rarely understood what they told us – blood cancer is complex medicine. We didn’t know what AML was, or how blood counts worked. We found ourselves adrift and out of our depth on this unknown ocean, cancer, with no chart to guide us. Nothing was quite clear. One doctor mentioned four weeks’ recovery time from chemotherapy, another said five. One mentioned more tests to be done; another seemed to think they knew enough. We scanned each phrase for clues, like priests trying to read the future in clouds.
Of course, we could have gone online to research, but shared an instinct not to. We wanted neither tales of medical disaster nor miracle cures, and dreaded the cocky self-assurance of internet oracles. Instead we chose to trust our consultants, and the tired, cheerful nurses who tapped on Nicola’s door, every hour, to take her ‘obvs’ – her ‘observations’, blood pressure and temperature – or bent over her Hickman line to squeeze in the deadly chemicals that would save her. It was their professionalism and quiet care we needed, not the shrill clamour of the internet.
Trust was what we needed: trust in our family, in each other, in the people caring for Nicola. Trust was Nicola’s instinct – it was how she worked in her theatre life. She didn’t bully people, measure them, set targets for them; she trusted them, and she would trust her doctors too. In the thirteen months of her illness, nothing made us regret that choice.
There were no certainties, though. Dr Clay had said Nicola’s cancer was usually curable. It was still cancer. Samaritan Ward was full of the very sick. Children lost in a forest, we had entered death’s realm, and we knew it. A week in, and feeling reassured by the prognosis, we cautiously allowed ourselves to look ahead. The cloud lifted just far enough for us to talk of ‘next weekend’, and ‘after this treatment’. It made everything worse. For one horrible weekend we worried and couldn’t talk. Nicola cried for the second time since she was diagnosed.
That was when we realised we didn’t want to look into the future. We were no longer welcome there: the future was a garden from which we’d been cast out. We couldn’t assume a cure – that would be tempting fate. But the alternative, of accepting Nicola might die, was something neither of us could face. A few days later she developed a slight infection. Suddenly she was in danger again – and with relief we fell back into the timeless dreamworld of the sick.
Days blurred. Sometimes the doctors let Nicola out for lunch, wearing a mask. We met in the old garden courtyard of Guy’s. Deep within a part of London we thought we knew well, it was a little haven of peace. Nurses sat on the grass eating sandwiches; poppies fringed the lawn; everyone talked quietly. The stone arch at one end had come from old London Bridge. The modern city, roaring around us, seemed a hundred miles away. We found ourselves in the eighteenth century, in Wren’s London or Hogarth’s. Slowly we walked along the cloister, prisoners enjoying the sun. We developed prisoners’ routines, convicts’ habits. There was an Italian café we went to on Saturdays, where they served lasagne and plates of tired salad, Coke from the fridge. We walked to the far end of Memorial Park, turned at the gate and walked back again.
Martha came to visit from Cambridge; Joe skyped between revision periods. His exams went past, one by one. At home, as the summer warmed up, friends took over our garden, trying to keep things in order for when Nicola was released. They pruned, fed pots, sprayed chemicals. I emailed Nicola photographs of flowers as they came out, one by one – Iris, Potentilla, Solomon’s Seal – snapshots of the summer she was missing. It seemed odd being out there without her; the garden was Nicola’s realm. I stared at plants whose names I didn’t know, at thickets of swelling greenery that might or might not be prunable. Nicola watched an old DVD of Bleak House, and texted me before she went to sleep. Sleep well loveliest most wonderful one, she wrote. I texted back, Honey sleep well I love you so much xxxxxx.
There might have been something idyllic about this drifting, timeless existence; but the thought of cancer never left us. One day, out on the ward, an old woman died. The nurses were quiet when they took Nicola’s obvs. They were upset. We’d imagined that somehow they became hardened to death, working on a cancer ward. But for a day or so you could see grief in their faces, as if death’s presence in the ward had suddenly become too palpable, like the reek of a fox on a lawn.
Gradually, almost imperceptibly, the weeks went past. Nicola counted down her twice-daily chemo. At last she texted, Done. Her first round of chemotherapy was over.
The treatment was over, but in some ways the hardest part was still to come. Nicola’s neutrophils – the measure of her immune system – would fall as she descended into neutropenia, then rise again to return her to safety. But for as long as she was neutropenic, she was vulnerable to infection.
We waited impatiently for the results of her daily blood samples. As her ‘platelet’ counts dropped, she needed transfusions. The platelets were yellow and vaguely repulsive, sagging in blisters from the hooks alongside her bed. We soon got used to them. After four weeks, treatment had become ordinary – Nicola had become a patient. She knew the names of the pills in her chest of drawers and what they were for. She had learned how the hospital worked; what she could trust and what could go wrong. Discreetly, she checked whether new platelets had been ordered, whether results had returned. She was a good patient. The sweet personality that made her so skilful a producer had her gossiping with cleaners, chatting with matrons. She was delighted when a masseur turned up at her door, sent by Dimbleby Cancer Care, to give her a foot massage.
The day Nicola’s counts started rising, we celebrated. It seemed like proof that treatment was predictable after all; that AML was curable; that Nicola was no different from other patients who had left Samaritan, cured, to resume their normal lives. And ‘normal’ was what we both yearned for. We wanted to wake up in the morning lying next to each other. I wanted to hear the sound of my wife brushing her teeth; the rhythm of light switch and tap so regular, so unchanging that I had never stopped to record it. We wanted to have breakfast in the garden at weekends, or on weekdays, rushing for work. We wanted to have lunch with Nicola’s parents, to go to exhibitions, meet friends at plays. We didn’t yearn for anything special. It was the unrecorded minutiae of life that we missed, those actions that
you remark no more than you exert the muscles that pump your heart. We wanted the miracle of ordinary health, of breath steadily flowing and our bodies moving easily to pull on socks, brush hair, send an email. We wanted the weariness of watching news at the end of the day, and the pile of washing-up in the sink after dinner. Gradually, in our years together, our habits had formed around us. We wanted them back. Most of all, we wanted to make plans, to choose Christmas presents, to fantasise about holidays we might never take. We wanted to put clothes away, trusting we would get them out again on another occasion; to talk of ‘next summer’ or ‘next year’ with the certainty that in time it would come around. We wanted to worry about others, not ourselves. We wanted the sky to unknot, and the earth to stop shaking.
When Nicola came home she was weak as a child. She sat in one corner of the sofa, smaller than she’d been the morning she left for work, six weeks before. Her eyes travelled over the kitchen, the piano and television, delighted to be back.
We’d been delayed leaving the hospital. Nicola had been packed by eight and ready to go, but her drugs weren’t prepared. NHS wheels ground slowly. Forms had to be filled in. The dispensary was somewhere else in the vast building. The morning’s blood tests had to be logged.
One result, a few days before, had depressed us. Diminished by four hard doses of chemo, Acute Myeloid Leukaemia will normally retreat into remission. Nicola had a blood marker that suggested hers was likely to recur. Not only would she need three more hits of chemo, but a bone marrow transplant, at the end of treatment, to ensure all remained well. We didn’t know, then, what a transplant meant. It was the extra time involved that seemed unbearable. Six months had already been lost. The transplant would add another three months, perhaps more – she would probably be off for a year in all.
Dr Clay sounded vague about it. ‘I’m not a transplanter,’ he said. ‘They do the transplants at King’s. You’ll meet Dr Anand – she knows all about them.’
For a day Nicola had been depressed, but she bounced back with her usual resilience.
Feeling much more cheery, she texted the same evening. My keyworker nurse confirmed no change to the view this will be cured. Just a more hardcore type of treatment.
I had scrubbed the house clean for her return. Neutropenic, Nicola would be prey to the bugs and bacteria all around her, so I scrubbed basins and disinfected toilets, rubbed the shine off the kitchen worktop, wiped down light switches, door handles, the knob of the kettle. It felt like I was revisiting all the habits of our life: our hands gliding up the banister to bed, switching off lights, closing doors. The thoughtless ritual of watching television: I ran a wipe over the controls, cleaning the buttons we would press to switch on news or lock in the DVD for our Sunday-evening ritual of pizza and a movie. I wiped down the knobs of her chest of drawers, effacing the mark of however many mornings when she had hastily grabbed knickers or tights, rubbing away the palimpsest of fingermarks that had accumulated invisibly in the house where we had been so happy for nineteen years.
Nicola had clutched her bag on her lap as I drove her home. The short walk from the car had tired her. Now she sat gingerly in one corner of the sofa, a stranger suddenly, whose world, like her clothes, seemed too big for her. She wore a yellow headscarf.
I took a photograph to send to our friends.
A very quick update to let you know that Nicola is back home after the first slug of chemo. Here’s a photo. Back in Guy’s the week after next, so keep the emails & thoughts coming.
We had two weeks together before the next treatment began. Nicola went to bed early. Pill boxes crowded the table where she kept her books. For some reason I had developed a sore throat. I slept in the basement, taking no chances with infection. From downstairs, forlorn, I texted her good night, as I had when she was in hospital. When my throat recovered, and I could hug her again, I could feel the knobs of her spine like crests of rock breaking through sand. During the day, while I worked, Nicola stitched away at her tapestry, or rested. She took her temperature every few hours, as she’d been instructed. It was early July. Out in the garden, the acanthus was unfurling; oriental poppies shed blowsy petals on the lawn.
Slowly, Nicola’s neutrophil counts – the sign of her immune system bouncing back – began to rise. When they reached 1.5 she would officially be out of neutropenia and able to see people again. We celebrated by having friends round to dinner. We’d planned a weekend away – our treat to make up for the summer’s lost vacations – but Nicola felt nervous. The fear of infection stalked us. What if something blew up while we were out of London? Normally so confident, Nicola felt brittle. The world seemed dangerous. She didn’t want to be too far from the hospital. Samaritan, with its threadbare rhythms and tired faces, now had a familiarity she missed. She missed feeling safe. She missed being cured.
We settled on a day trip to Kent and one night away. I drove us to Penshurst Place, where we’d gone with the children, in the days before we had a garden, to watch them roll across green lawns surrounded by high yew hedges. It was Nicola’s favourite type of English garden. As we drove in, wheels trailing plumes of dust from the gravel, roses nodded against a faded brick wall, too high to see over, that ran along one side of the park. Her grandparents had lived in Gloucestershire, in an old stone house with a lawn. Educated at the Lycée, fluent in French, well-travelled, a Londoner to her core, Nicola nevertheless felt the pull of gables and mullioned windows, their Englishness, their familiarity. She had studied the Tudors when she read history at Oxford. We used to play a game of which portraitist we’d pick for each of our friends. For herself she wanted Holbein. Her parents loved old Tudor portraits. One hung in their house, an old woman, thin-lipped, straight-backed, standing on a rush mat and leaning on a cane. At Penshurst we sprawled on the grass. Nicola took a photograph of me. When I look at it now I can see how stressed I was. We wandered through the garden and remembered our children running along the path past the herbaceous border. There was a pub in the village where you could buy food.
From Penshurst we drove west towards the hotel Nicola had booked. The aeroplanes overhead came lower and lower until we found it, eventually, by the perimeter of Gatwick Airport. It didn’t matter. The courtyard we drove into was surrounded by thick bushes; the room we were shown had a deep, soft, comfortable bed; and beyond the house, a lawn stretched past shrubs to a quiet pond shaded by willows.
A few times, before we had children, we’d gone away for weekend breaks, but rarely since. In this luxurious place it felt as if we had borrowed other people’s lives. The guests were all couples, prosperous, middle-aged. For them a weekend away was nothing special – they would take other weekends, other holidays. And perhaps it was then we realised how much cancer was changing us. Alone among the hotel guests, we had no future we could count on. Tonight was the only time in which we could live: the cool gin and tonics on a tray; the scent of the lawn; the pattern of Nicola’s shawl. We had the hope – a real hope – there would be other evenings like this, perhaps many of them. But there was no longer any flow or expanse to the space we lived in. We inhabited it one room at a time, like children straying through a house abandoned by grown-ups, opening cupboards, peering down stairwells.
We sat on a bench together in the garden hemmed in by trees. We didn’t envy the other couples. Their powerful cars lined the gravel outside, ready to hurry away. They had money but no time, had time but didn’t know its value. They didn’t even know how healthy they were. The wine they sipped tasted only of wine; the dishes the waiter unveiled with a florid incantation of ingredients were mere platefuls of food. Perhaps, when they were old, they would try to recall this hotel, and wouldn’t even remember the terrace outside with brass-shod chairs, or the shy waitress with red hair, or the ducks swimming on the pond. We, by contrast, would never forget them.
We sat alone in the dining room, marked out by Nicola’s headscarf, cancer’s uniform. We were marked out from all of them. We had no future, but the present had never s
eemed so real, or so ancient. We had each other; we were alive. Instead of in a luxurious hotel, we might have been anywhere – on a sea shore, or a bare mountain ledge. The waiter brought our food. It tasted so strong it was almost unbearable. The courgettes were fragrant with life, the meat dark with blood. Nicola pushed her wine glass away: two sips had gone to her head. After dinner we sat out beneath stars that bowed down under their own weight until they hovered just above the grass, and the night, heavy with the scent of flowers, poured sluggishly about us, like a stream flowing through weeds. An aeroplane lowered above us, yearning for the earth.
We drove home next morning, not stopping on the way.
The blood cancer clinic was held on Mondays, early. They took Nicola straight in to start her second round of chemo. She texted me the latest good news: Bone marrow in remission! I’ll call soon.
‘Call soon’. Today the phone lies dead in my pocket. I listen to old messages, sometimes, to hear Nicola’s voice. Her words whisper in my ear when I wake up. It seems extraordinary, now she is gone, that the world keeps turning at all. I don’t know how the sun can be troubled to rise and set; and yet light stretches along the horizon, each morning, summoning trees and flowers to the weary requirements of another day. I shave, wash, cook. I can feel myself dropping through a void, like a body falling from a tower, or a man in space. Sucked from the capsule in which we lived, Nicola and I hurtle away from one another, lives dwindling to points of light, then darkness.
I woke up last night and when I tried to remember Nicola’s face I could recall only the line of her hair, coiling from lock to lock along the side of her sleeping cheek. Which is why I am writing this: to fix words on the page, to close them in darkness before the ink can fade.