How do you learn to live in the wake of death?
Patrick Dillon and Nicola Thorold were together for twenty-eight years. Patrick was an award-winning architect and writer and Nicola a leading figure in theatre, awarded an OBE for her contribution to the arts at London’s Roundhouse. Their two children were almost grown-up. Life was good.
And then, in May 2015, Nicola was diagnosed with leukaemia. After several rounds of treatment, a bone marrow transplant and many waves of recovery and decline, she died thirteen months after her diagnosis. Six months later, at Christmas, Patrick started to write.
A Moment of Grace is the searing, tender account of Patrick’s life with Nicola and her illness, and his life after her loss. But it is more than a story of illness and unbearable grief: it is a book of memory, of home, of family. It is a tale of the transfiguring power of love. Heartbreaking, life-affirming and truly unforgettable, A Moment of Grace is one man’s journey to find life after his wife’s death.
Patrick Dillon is a writer and architect. He is the author of acclaimed histories of the eighteenth-century gin craze and the Revolution of 1688, as well as the children’s books The Story of Britain and The Story of Buildings. As a theatre architect he led the regeneration of the National Theatre.
His wife, Nicola Thorold, was producer at London’s Roundhouse, and co-founded the international theatre festival World Stages London, and the pioneering arts movement, What Next?. She was diagnosed with Acute Myeloid Leukemia in 2015 and died in June 2016.
NICOLA THOROLD
1965 – 2016
This is the story of my wife’s death from leukaemia. It isn’t a sad book. In our last year together we were more happy, in some ways, than we’ve ever been. She was fifty-one. Our two children were adults by the time Nicola died.
Nicola worked at the Roundhouse in London’s Chalk Farm. She produced shows there – theatre, circus and dance. A few months before she fell ill, she put on Monteverdi’s L’Orfeo in partnership with the Royal Opera House. On the opening night we stood talking in the foyer as the audience flowed up the stairs. Nicola wasn’t most people’s idea of a theatre producer: she wasn’t flamboyant or extrovert, she was genuine, natural and unaffected. Her parents, Anne and Peter, were there. We talked to friends we’d known for years; to people from the production team; to the designer who’d worked on the show. Talk rose up between the old brick walls of the Roundhouse, filled the bar, diffused above us; next door we could hear the orchestra tuning up. Nicola glowed. She was doing what she cared for most, surrounded by the people she loved. She was in her world.
Inside the auditorium, lights winked on the roof of the Roundhouse, high above us, and the row of iron columns at our backs. I could tell Nicola was nervous and squeezed her hand in encouragement. How many shows had we been to together? I’d never thought of counting. We’d be going to them, I imagined, for as long as we both lived – until we were old together, still doing the things we most loved.
The lights dimmed. We heard the familiar rustle of the audience hushing as attention focused on the stage. The music began. They’d cast young singers in the leading roles. I’d seen the opera before, so I knew the story of the poet who goes to hell to retrieve his dead wife, Eurydice, and persuades Hades to let him return her to the light – so long as he doesn’t look back. I didn’t feel any premonition. Four months later, Nicola would be diagnosed with leukaemia, and a year after that she would be dead; but I didn’t know, then, that I would have to set out on my own journey to recover her – that I, too, would find myself in a dark place, the road lost, searching for the gates of hell.
There was a wonderful party afterwards. We took the tube home. L’Orfeo wasn’t the last show we went to. We spent Easter in France, and had a weekend in Madrid to celebrate Nicola’s fiftieth birthday. We had no warning of what was to come when our GP rang me at home, one Friday afternoon at the end of May.
‘Mr Dillon?’
‘Yes.’
‘We’re trying to get hold of your wife, Nicola Thorold.’
She’d been to the surgery that morning. In the last couple of weeks bruises had appeared on her legs, as if she’d knocked herself. Before that she’d had a virus, but she seemed to have shaken it off by the time we went to Madrid. Not quite herself, she managed the museums nonetheless: Goya and Velázquez. We found a blue-tiled restaurant, cool and high-ceilinged, and ate grilled shrimp and salad dressed with anchovies; she took rests in the afternoon. And then the bruises started to appear.
She ignored them until I bullied her into visiting the doctor.
‘He took a blood test,’ Nicola said when I called her late morning. She didn’t sound worried. ‘He said they’d get the results quickly.’
That haste was the only warning note, looking back. But we didn’t hear it. I’d just left my job. As we spoke I was standing outside my old office, exhilarated. I was due to start at a new architects’ practice on Monday. That evening we would celebrate freedom.
But the evening didn’t arrive.
‘We need to speak to her urgently, Mr Dillon. Do you have any way to get hold of her?’
‘I can try her mobile.’
‘She isn’t answering.’
‘What’s it about?’
‘I can’t tell you that, Mr Dillon, but this is important. It’s essential we see her before the weekend.’
‘I’ll try to get hold of her.’
My voice sounded unnaturally calm, even to myself. I was always good in a crisis, and this was already a crisis. As I put the phone down I knew this story had started. The GP’s call was the first banging of a shutter, heralding a storm; the water slicking back along the harbour wall; the ground’s tremor before an earthquake. Something was wrong.
Nicola’s phone bleeped into a void, rhythmic and weak like the throb of a pulse, or a buoy flashing at sea to warn of danger. I tapped my finger on the desk to calm myself.
‘Hello?’ Her voice sounded normal.
‘Cara.’ My name for her. ‘The doctor telephoned …’
‘I know, I got their message. I’m on the way home.’
‘Did they say what it’s about?’
‘No.’
We both sounded calm. This, it was already agreed between us, was how we were going to handle the crisis – whatever it was. We knew each other. We’d been together nearly thirty years. Whatever happened, we would be strong together.
‘Shall I meet you at the surgery?’
‘On the corner outside.’
I have her texts still. Crossing Bridge at 16.45 that Friday afternoon; at 16.47, I’ll meet you at Wincott Street. I stood on the corner, waiting. Sometimes I feel as if I’m waiting there still – or as if, in that moment, life could have taken another turn. We could have met on the corner, happy, and gone to dinner to celebrate my new job; or met on the corner and gone home. I remember watching cars drone along Kennington Road. It was all so familiar: the newsagent, the parked cars and pelican crossing. But already everything was changing. Invisibly, our world was being packed away around me, like a funfair after the carnival. The places we loved, the habits we’d grown, were fading from sight, one by one. Our future was vanishing in fog.
We’d always been so lucky, until that Friday afternoon. And we knew how lucky we were. No landslides had carried us away; we’d suffered no catastrophes, bereavements or major illnesses. We came from happy, stable homes, loved our children, and earned enough to be comfortable. Time had rolled by in a dependable sequence, the years passing as solidly as stones in an ancient path, as if someone had gone that way before, to clear the track for us. Perhaps the only unusual thing about us was the depth of our love, a blissful, all-consuming love that had united us for twenty-eight years.
That, too, had begun on a street corner. Saturday, 14 November 1987, Nicola and I met on the pavement outside the Whitechapel Gallery. We’d already known each other for five years. I’d once stood in as a date for Nicola’s high-school leaving dance – her boyfriend of the time was away. She wasn’t quite beautiful then – it was later she became lovely – but she danced wonderfully, as if her grace was internal, revealed by music, and she was just waiting for the years to complete her. Nicola’s eyes were a warm sea green. Her mouth was wide. When she smiled, her lips broke goofily along the line of her teeth; everyone loved her smile. Five years on, we were close friends. We’d both been in other relationships, but even so, there’d been moments along the way when we’d glimpsed what was to come. I stayed with her family in France one Easter. We were revising for exams, but escaped for a drive through woods to a castle nearby. Nicola had been going there since she was a child, when her parents bought the ramshackle old farmhouse in Aquitaine. It was her private place, revealed only to close friends. In driving me to the castle we both felt as if she was showing me something, pointing out a cleft in the horizon, a tower we would one day inhabit. Neither of us would have been surprised had someone predicted our future together, raising children, being happy.
So love had hovered around us, not quite landing, but then we found ourselves, in autumn 1987, with long-term relationships over. Nothing was said. Nicola came to spend a weekend in Suffolk, where I’d borrowed my sister’s cottage on the river at Pin Mill. Perhaps I was showing her, in my turn, the places that I loved. Maybe we were displaying the treasures each could bring to our union, in a ritual as old and solemn as the meeting of families for an arranged marriage. Perhaps we were touring, in advance, the places where we would later build our life together.
The weekend after, the Whitechapel Gallery began a Cy Twombly retrospective. We wandered past the huge, textured canvases. They looked ancient, as if they had been rescued from pyramids or excavated from a rock face. There was writing on them: snatched words and phrases – Apollo, Venus – and looping figures, white on grey, that were almost writing. Our love and marriage would be an affair of words. I think I might be falling in love with you were the words Nicola spoke later, leaning back against my legs in the flat she shared with an old college friend. And in the years after that came endless conversations, lying in bed, walking home from the theatre, tramping through woods in France. Twenty-eight years of words scrawled on the walls of our lives. Birthdays and Christmases; the first words spoken in the morning and the last at night. And then, when she was in hospital and couldn’t speak anymore, the texts we sent each other before sleeping: Good night my darling husband. Good night my most perfect wife.
I took her hand, as we sat on the floor of our friend’s flat. Nicola never lacked for courage, and never lacked it later. If she wanted something, she wasn’t scared to say so. She loved me, so she told me so. I remember the warmth of her lips when we kissed, the warmth of her fingers as they clutched mine. That night we slept in her tiny bedroom with a sloping ceiling and collapsible futon, and felt time surging into a future that felt inevitable: a future spent together.
And now, on a street corner in Kennington, time was collapsing in on us with a rush. We could almost feel it, like a cold breath on our faces. Normal life flowed by, but we were marooned within it; stuck fast, like a ship caught on a mudbank with the tide pouring out around it. People walked past, tired from the day, eyes intent on planning dinner, or the evening’s phone calls; a bus hissed along the kerb; a dog tested its lead, snuffling the base of a wheelie bin. We were different: our future was gone.
We had nothing to go on except the doctor’s call, but it was enough, already, to draw a curtain across the horizon. We’d booked a holiday in Greece in June, three weeks off. We need to see her before the weekend. Did that sound like the sort of thing that might be over in three weeks? Probably not. The grand recalibration of our lives was already under way. This book is the story of a star imploding in space, collapsing in on itself under forces too massive, too natural to resist; making no noise; an implosion so embedded in time as to be neither quick nor slow, because it makes its own time around it; because its rush is the thrum of time draining away, and the sudden darkness – the ensuing black hole – is time’s end.
‘Did they say anything on the phone?’
‘No, just urgent.’
Nicola’s face looked pointed and sharp. She was afraid, I knew, but determined not to show it. She was still wearing her work clothes. They’d be balled up, later, in a bag by her hospital bed and I’d take them home. She looked beautiful, two weeks before her hair went and the chemicals seared her flesh back to the bone. She looked beautiful afterwards.
We had one thing on our side, although we didn’t know it then. It was magic of the most potent sort: we’d never taken one another for granted. That knowledge would strengthen us in the thirteen months we had left. It would strengthen us as Nicola’s physical strength failed and her horizons narrowed. It would strengthen us even when she lay in intensive care in her last weeks, with machines winking in rows around her – blood pressure, temperature – and an oxygen tube whistling in her throat; as Chris or Anne-Marie, one of the nurses we got to know so well, deftly snapped another syringe of Fentanyl into the rack by her bed; as I held her hand under the sheet. We were never complacent about happiness. It was our blessing, not something to which we felt entitled.
Neither of us knew the GP, a locum, perhaps, or someone new. I’ve never seen him since, the man who pronounced my wife’s death sentence.
‘What exactly is wrong?’
‘The consultants will want to talk to you about it.’
‘It would be helpful to have some idea. Of course we’re worrying.’
There were some books on his desk and a tired computer keyboard. It was the end of his day. Nicola sat up very straight, chin high. There was a focused look in her eyes. She was always so brave and matter-of-fact; a stoic, never one to sink her head in her hands.
The doctor didn’t know which of us to look at, so he told me: ‘They think … they’re fairly certain … it’s a leukaemia.’
We’d reached that moment from the movies; or from one of those wakeful nights when life veers off its tracks into imagined narratives of tragedy and disaster. But fiction and nightmare provide a kind of insulation; this was real.
I took it in. I didn’t take it in. I looked at Nicola, who nodded at the doctor, absorbed not in herself, but in the conversation we were having with him. And something odd happened. In my own mind, like a shrill tinnitus behind the sound of their voices, came the thought, This is just as one imagined. It would be with me for the next thirteen months, that voice, until she died. The inner commentator; the detached part of oneself – detached even as one’s ship ran onto the rocks, as the house burned – who watched and processed, recording the deterioration of our lives even as thermometer and oxygen probe tracked the decline of Nicola’s body. Just as one imagined – and then, like the pad of a foot on the path behind us, fell the louder, nearer sound of what was actually happening: Nicola had cancer.
Our remaining time together would always carry that reverberation: our story, and the telling of our story a split-second behind it, like the echo in a church. Later on the ICU doctors would measure the slow failure of Nicola’s body in the green-figured screens over which they pored so intently, concern and intelligence plaited on faces that gauged death’s approach. And we too, in the next thirteen months, would learn to sense and measure each quivering emotion, to parse out the finest nuances of love and fear. The air was already rushing out through our lives, like a balloon deflating. I could feel its vibration under my fingertips. Perhaps capturing it felt like a way of slowing the rush. I was trying to tame shock through narrative, perhaps trying to turn what was happening to us into something that others might understand – which, I suppose, is why I’m writing this book.
The doctor was apologetic. Bad news on a Friday afternoon. To him, foot soldier in the NHS ranks, the duties of the firing line.
‘I need to go home and get some things,’ Nicola said. Only I could hear the nervousness in her voice.
And it was then we realised how close death was. ‘No,’ the doctor said. ‘You really have to go to A&E straightaway.’ His voice quivered. ‘Right now, please. Now.’
He rang them. His phone call was the leper’s bell, clearing the way ahead. One imagined alarms ringing down hospital corridors, beds made, nurses washing their fingers under a silver thread of water, as if Nicola’s death was a ritual already begun. We were marked out, different even now from the old women dozing in the GP’s waiting room as we went out, from the two receptionists gossiping behind the counter, from the commuter cycling home down Lambeth Bridge Road.
We walked side by side, not talking. We carried a burden no one else could see, a knowledge no one shared.
‘Someone at work was diagnosed with leukaemia,’ I said, filling the silence. ‘There are different kinds of leukaemia, he said. His isn’t terminal, it’s just something he lives with. It’s fine.’
‘Of course it’s going to be fine.’
Our instinct was to make this feel normal – whatever it was. The world had been knocked off its pole; we needed to put it back. Bad news need not be so bad. There was always a way ahead. Normality was our greatest wealth, and we fought for it until the very end. A leukaemia, the doctor had said, first lesson in the medical language we were shortly to learn. So: more than one type of leukaemia; so: perhaps we had the better type. The scene sketched itself in both our heads as we walked across Archbishop’s Park, past the deserted football pitches, and the playground where we’d once watched our children cling to the roundabout. ‘Yes, you’ll need regular check-ups,’ we could imagine a doctor saying, ‘but this is really very common.’ It didn’t seem impossible. In our imaginations, regular check-ups – or whatever this crisis demanded – felt like a concession to what had happened, a down payment to show our fantasy wasn’t too childish. That was how we balanced reality with hope, in the hours ahead.
Nicola walked steadily alongside me. I talked to comfort her. We kept step in our instinct to be calm, but around us the clouds were melting, the trees withering. We didn’t look at them. More dreadful by far was the fissure that had opened between us, a hairline crack. For nearly thirty years we had done everything together: lived, loved, raised children. Now a summons had come. One of us had been called away. It was in Nicola’s blood that the rogue cells were surging and darkly multiplying, even as we walked past the heavy summer trees, laden with leaves, past the gardeners’ shed with a mower parked outside it. It was Nicola, not I, who would lie on an operating couch, an hour later, while a young doctor in a blue plastic apron pecked at her spine with a needle, trying to dredge up some of those rogue cells for analysis.
We were scared together; we faced cancer together. But the cancer was poisoning her blood, not mine. It was Nicola who would die, thirteen months later, with a tube in her throat and her lips weakly fluttering as she tried to smile at me.
‘The surgery called ahead,’ we told the nurse on reception at A&E.
‘Have you been here before, dear?’
The kindliness of the NHS; its dowdy efficiency. The nurse tapped at a keyboard held together with tape. Around us sat the clients of St Thomas’s A&E: a Sudanese family in robes, grandfather leaning his hands on a stick, two girls swinging their legs; a drunk slumped across plastic chairs; a burly, bandaged man in a high-vis. Rubber tyres squeaked on the lino. An old man was pushed past on a gurney, naked shoulders as brown as leather and a drip swinging above his head. I watched Nicola’s eyes following him, and knew what she was thinking: this was the company she had joined, her new family of the sick. How, in a moment, could so much status be lost? Nicola was a leading figure in the arts. She wasn’t a proud or arrogant person – the very opposite. But we saw the world from the modest heights we had scaled together, living among rooftops and terraces, not in luxury but above the city’s gutters. Now we were jostling along in the crowd of suffering, coughing, sickening humanity. Blood cells respect no class or salary, thank God. We were just ordinary patients, a sick woman and a frightened husband.
We confirmed our GP’s address. Someone got Nicola a wheelchair, though she didn’t feel ill, just scared. And we both knew, without saying it, that this was where we needed to be, among other people who faced what we faced. Since we had no entitlement to health, nor should we expect any other special treatment.
‘The doctor will be a few minutes.’
The doctor had tousled hair and looked barely older than our son. His natural expression was a friendly grin, although he tried his best to look concerned. They wheeled Nicola into a ward at the back of A&E, half-darkened. They needed white cells from her bone marrow.
I sat hunched on a chair and watched, from a distance, as her torment began. My wife’s smooth and lovely body transformed, suddenly, into something for medics to examine and analyse, a broken thing that needed to be fixed. I couldn’t see her, just the doctor’s back, and the shape made by her legs. The lights were dimmed. I clutched her grey coat on my knees, the coat she had put on that morning in a different world – breakfast snatched, a coat flung on the shoulders. Twenty minutes, they had said. I read anxiety in the hunch of the young doctor’s shoulders. He’d already been half an hour. I realised that I needed to cry. I went out along corridors past parked gurneys, out through swing doors into the hospital’s labyrinth. In an old marble hall my footsteps echoed oddly behind me, as if their tuning or timing had been subtly changed. Memorial boards listed the dead. The marble heads of doctors stared past me. An old woman in a dressing gown shuffled along on a zimmer frame. I found a glass door opening onto a dark garden. I hadn’t realised night had fallen – we must have been in A&E for hours already. A passing cleaner glanced at me, then went back to pushing his mop across the floor. I wasn’t sure if I was supposed to be there, but opened the door and went out.
The silhouette of a chapel loomed above me. I was in one of the courtyards between the blocks of old St Thomas’s. In front of me was a terrace with the river slipping beyond. The clouds overhead were orange.
I sat down on a bench, barely able to breathe. The noise I made was thin and unnatural. I wasn’t good at crying – I wasn’t used to it, I’d had so little to cry about. I had cried after my father’s stroke, and Nicola had held me in bed, comforting me. I cried again when he died, conventional tears dampening my wife’s soft neck. The tears I wept now were ugly and harsh, dredged up from inside me, as painful as bile. I tried to grab hold of what was happening, of what I needed to do. I couldn’t. It felt as if time was burning through my fingers, searing them when I tried to slow it. Nicola’s illness in Madrid – the bruises on her leg – more than one type of leukaemia. There was no abacus on which to compute this data. She lay inside with a doctor stabbing needles into her bone. Buildings after an earthquake stay crazily upright, stairs climbing to nothing and bathrooms exposed. Our life felt like that – shaken once, viciously, but still standing; insecure.
I looked at the roofs of Parliament, lit up orange. If I were to walk up to the parapet I would see Big Ben, its face hanging in the sky like a second moon. Our children had been born in this hospital. The seventh floor – or was it Room Seven on some other floor? A corner room with big windows staring at Big Ben, so that we could read the time of their birth from its ivory face. The midwife’s name was Myrtle. She delivered both of our children, two years apart. With our first, Martha, we had no idea how we would feel as parents. I could remember Nicola coming down to the pool at her parents’ house in France, on a summer holiday, holding the plastic pregnancy kit and crying. We had made something together, a living embodiment of love, and as logical in its sequence as our first kiss, or the first time we slept together. Nicola had never quite trusted her body. She was too fat in girlhood, she thought. She was no sportswoman. But in pregnancy she was graceful. Her walk slowed to an unhurried amble. Her face glowed. She gave birth to Martha kneeling, fingers gripping mine as I smoothed her damp hair. Her cry of pain came from somewhere deep and unsophisticated, from the more ancient woman within her polished self. Her chest heaved under the hospital gown. Her shoulders were slick with sweat.
‘Well done, Nicola. Give me another push.’
Pain that gave life. ‘A girl, a little girl.’
Shrivelled in the midwife’s hands, fists clenched, eyes tightly shut. Outside, in a different world, the hands on Big Ben pointed to seven-twenty and people walked past on Westminster Bridge. It was the start of the most wonderful adventure of our lives together. Parenthood slowed and deepened Nicola. We both felt a contentment we had never dreamed possible, in each other and in our lives. It was slower than first love and more deep-rooted, binding us together under the soil. Two years later, Joe was born in the same room at six in the morning. Myrtle drove me home. Our new son kicked in a crib while Nicola tried to sleep – she had been torn. I found her holding him, a few hours later, with a furious love that would have made me jealous if I hadn’t shared it myself.
‘Was it awful?’
‘It was fine.’ A reassuring squeeze of my hand.
The doctor looked exhausted. ‘We couldn’t get a sample, unfortunately. The white cells are packed so tight I couldn’t get the needle in. It sometimes happens like that.’
A consultant came. His face was deep-lined and his manner learned. He nodded and smiled as Nicola described symptoms, not listening. He explained, without explaining anything. Nicola sat up against the pillows, bright-eyed, smiling and lucid, her courage fuelled by adrenaline.
‘Our son starts his A-levels on Tuesday week,’ she said. ‘I think I ought to delay treatment until after the exams.’
The consultant shook his head straightaway. His answer was carefully phrased. ‘I have to tell you,’ he said, ‘that you are in a life-threatening situation.’
They put her on a darkened ward, awaiting transport to the blood cancer unit at Guy’s. I sat on a chair outside, hoping she’d sleep. The hospital’s small dramas went on around us as we waited. Most of the beds were empty, but on one an old man, drunk, lay moaning. The nurses seemed to know him. Little by little the story emerged. He was homeless. He checked into different A&Es each night to get a bed, using a false name.
‘You were here last night, Harry.’
He moaned, drunk, or pretending to be. The dimmed light washed over one side of his face, an unshaven cheek. Silence, then a sudden yell, unguarded as a child’s.
‘It hurts … it hu-urts.’
Outside, in the glaring overhead lights, they loaded Nicola onto an ambulance to drive her to Guy’s. The office blocks stood tall around the hospital; the street was quiet. Dead night. Only the bright cavern of the ambulance hollowed out the tarmac darkness, a hole of bright light illuminating oxygen bottles and masks, scuffed lino, a red blanket folded on the gurney. A single whoop on the siren, and we hung in a queue, blocked by the vehicle in front.
Nicola