We’d discussed euthanasia before leaving Scotland. It reassured Magteld to know that if her pain became unbearable, the Netherlands would allow her to end her life peacefully, with her doctor’s consent and cooperation. At that stage she had nothing worse than a severe cough, but the knowledge that she could become acutely ill in a short time dogged her.
Euthanasia was a comfort, not a threat. I hated knowing she was dying and loathed the disease that was grinding her down, but it was worse still to see her writhe in pain. The most dreadful moments were deep in the night in Glasgow, when she leapt out of bed, screaming, ‘Kill me now!’ It would be a monstrous cruelty, I thought, to prolong a life when only suffering remained. And I remembered the colleague who developed an aggressive cancer at an even younger age and took his own life when he was told he had a matter of days left to live.
In her bedside cabinet at the hospice was an envelope containing a ‘do not resuscitate’ letter, one of the last documents she ever signed. Assisted dying was something she would have to discuss with her family doctor, once she had acquired one. That was another pressing reason to sort out her residency: she needed to be a resident to access insurance, and she needed to be insured before a doctor would take her on.
Among the other guests in the hospice was ‘Robert’, a garrulous man who seemed to be in his late forties. He had led an active life until he was confined to his bed by paraplegia, and now had to be wheeled down, prostrate, in the lift for mealtimes, where he held court from his elevated position. He talked freely and openly, seemingly in no pain. We never saw him receive visitors. For all the strong sense of camaraderie, the residents sometimes grated on each other, and Magteld sometimes flashed her eyes and muttered at me not to encourage him.
When my parents came for lunch Robert told some of his life story: he had left the Netherlands as a young man, with a basic schooling, and worked as a barman in more than twenty countries around the world. He was proud of his achievements and his workmanlike English, gleaned from his days on the road. Of his own nation he was enthusiastic: ‘This is the best country to live in the world. There’s always someone to look after you.’
I became fond of him when he told Magteld she was lucky to have a strong man looking after her, even though I often felt ready to break in those days. On the Friday before her weekend at home Magteld shared some unexpected news. ‘Robert’s going home,’ she said. Her eyes were bright, and I saw she was excited, both for his sake and for her own.
‘Who’s going to look after him?’ I said.
‘A friend of his is taking him in. He doesn’t have long. He’s just going to enjoy his last days. Isn’t it great?’
I could see her reasoning: if bed-bound Robert could spend his final days at home, surely she could, too.
I took her back to the hospice on Sunday morning. It was Dodenherdenking – Remembrance Day, the eve of the liberation celebrations – and tricolour flags at half mast were draped over the city in memory of the war dead. The lift was out of order, so a bed was made up for Magteld in the office downstairs. I went into the dining room so she could rest and the boys could play with the giant teddy bears. Robert was there, in his bed, dressed for his grand departure in a clean shirt and trousers.
Two ambulance personnel walked in and rigged up a mobile stretcher next to his bed so they could carry him out of the door. But Robert’s spine was too brittle for them to risk manhandling him. The only way he could escape the divan was to raise himself up on the triangular hook that dangled above him, so they could swing his legs across and lower him down.
Robert looked to the left. It was a distance of no more than three feet, but to him it must have looked like a ravine. He puffed his cheeks out and forced a few stiff breaths from his shallow lungs. His eyes focused on the ring, and he gripped it tightly with his fingers. Then, with a hoarse scream, he summoned all his strength, raised himself off the bed and dragged himself over to the stretcher, where he lay catching his breath and smiling weakly but triumphantly. A candle was lit in the lobby, and a song was played to accompany him out. The last I heard as the doors closed was his voice trailing away as he was pushed into the sunlight and the fresh air. Then the engine of the ambulance roared, and he was gone.
Magteld came back home on Monday night. Adam was starting school the next day, and she wanted to be there on his first morning. When I fetched her from the hospice in the afternoon I saw immediately her head was down, and in a muted voice she told me about Robert.
‘He didn’t go home,’ she said. ‘He had an appointment with his doctor. He died yesterday. He’d arranged euthanasia.’
The story about a friend looking after him had been a fictional vignette. I thought back to that moment the day before, when he had raised himself from his bed. How he had grimaced and used every ounce of strength left in his wasted body to cross the gap to the stretcher. Had he been anything less than one hundred per cent certain of his intention, had his resolve wavered even for a second, I felt sure he would not have managed it. His will to die was absolute and unbending. He had called me a ‘strong man’ and told Magteld not to worry about the children’s future, and that was a fine sentiment, but I’m not sure I will ever have the strength, physical or mental, to commit myself to my own demise as he did.
Magteld, however, was having second thoughts. She had too much to do in life. She kept the ‘do not resuscitate’ directive, but never mentioned euthanasia again.
On Monday night, as Magteld lay in our bed, I sat up sharpening pencils and preparing Adam’s schoolbag for the next day. The next stage of our journey was the 500-yard walk to the school gates. For Adam it was a dive into a vortex. His life had been wrenched from its foundations as if by a hurricane. And now he was being sent to a strange school where everyone spoke in a language that was still largely foreign to him.
His anxiety took the form of a wordless anger and an ironclad refusal to comply with the most basic instruction. He needed stability, reassurance and warmth. But his mother was dying, and both of us were hamstrung by grief and apprehension. Two days before school I lost my temper with him, and in his frustration he propelled himself head-first into the glass of the sliding doors between the two main rooms. Fortunately it left him with nothing worse than a cut nose. It earned me a tart rebuke from Magteld: ‘I missed the adult in that relationship,’ she said.
I was unable to provide the comfort he needed. I was terrified of losing Magteld, of failing to adapt to her country, of Euan and Adam condemning me for taking them on the whole senseless escapade. As long as she lived, Magteld dominated our perspective like a setting winter sun.
The next morning we set off for school, the boys racing ahead on their scooters as I pushed Magteld along. In the first few days I mastered the contours of the neighbourhood: the loose paving stones, dropped kerbs, manhole covers, tree roots and concealed gutters, every dip and bevel. The headmaster came out from the school to greet us, together with Adam’s class teacher. He had gym on the first day, which we hoped would be a welcome distraction. For five minutes we stood and chatted around Magteld in her wheelchair, like hikers pausing at the top of a hill to enjoy the view. And then we took Euan home, to resume a domestic life that was threatening to become orderly.
11
Dr Houtsma was cautiously enthusiastic when we saw him again the following Monday. He summarised the results of the scan. There was no way to sanitise the fact that Magteld’s cancer had spread further. A new cluster of cells was putting her hip under strain, which explained why she had been struggling to swing her legs out of bed for the last few mornings.
Dr Houtsma looked up and paused a beat. ‘Do you want to see the scan?’ he asked.
Magteld looked uneasy. Dr Houtsma sat perfectly still. He seemed ready to wait all afternoon. The smile never left his face. And then Magteld said, ‘Yes.’
It was like watching a grotesque game show. He turned the screen towards Magteld to reveal an image of her skeleton. Most of the picture was a fa
int grey, but her spine was a shocking strip of white. ‘Anything white is a concern,’ he explained. We looked again, this time in faint horror. Magteld’s backbone was as shrill as a neon sign. She looked at me uneasily, her upper teeth clenching her lower lip. The only grey area in the entire length of her backbone was the patch just below her shoulders which had been targeted by the radiotherapy just before she left Glasgow. And even there the cancer cells were starting to regroup.
There were a few shreds of hope. The lesions in Magteld’s right lung had shrunk, though on the opposite side they had become tumours. A bigger complication was her hip, which was at risk of breaking. Because of this Dr Houtsma decided on a short course of radiotherapy, followed by a new course of chemotherapy, comprising six sessions of paciltaxel and carboplatin. She would lose her hair again and could expect more gruelling side effects. And, though he didn’t spell it out, it would probably give her a few months at most. It was a high price, but perhaps we could steal one last summer.
‘I’ll go for it if you will,’ Dr Houtsma said.
‘Absolutely,’ said Magteld.
But the radiotherapist, whom we saw next, took a different view. Stabilising Magteld’s hip for the duration of her chemotherapy would require around ten treatment sessions. The chemotherapy would need to be put back a further week to 28 May. We agreed: what difference would a week make at this stage? Magteld was getting stronger every day, after all, and the prize of regaining movement in her hip, perhaps even ditching the wheelchair, was worth waiting for.
We came away with a printout of radiotherapy dates, all at different times of day, so I would have to manage Adam’s school times around them. Back home I pulled out the diary and tried to untangle the logistical knots of the next two weeks.
A phone call from the hospice that afternoon brought a cold shock. It was one of the managers, asking if I had all the home-care arrangements set up. ‘No,’ I replied, a little bemused.
‘I need to know that you’ve got everything arranged,’ she explained. ‘Magteld’s being discharged tomorrow.’
Behind the scenes Magteld had been plotting her exit. Most of the practical issues had been anticipated. A nurse would come to the house for an hour every morning, to help her out of bed, shower her and get her dressed. I just had to take care of the rest: shopping, cooking, helping her get about, the school run. ‘It’ll be fine,’ Magteld said when I spoke to her. The tinge of irritation in her voice snuffed out any nascent objection I might have had.
Once my panic receded I had to pause and applaud her tenacity. She had it all worked out.
I arrived at the hospice on Tuesday morning and filled two suitcases with her clothes and toiletries, as if she were returning from holiday. She was bright and cheerful, and the volunteers formed a guard of honour as I wheeled her through the front door. There was no fanfare, no parting song, no candle burning in the hallway. This was a homecoming, the conclusion of an odyssey.
Our fragmented lives coalesced into a routine, a buttress of domesticity against the encroaching darkness. The days were tightly choreographed. I got up and fixed breakfast: a bowl of muesli for Magteld, laced with yoghurt and pieces of fruit; for Euan and Adam the familiar Dutch opener of bread topped with chocolate sprinkles, most of which cascaded onto the floor. I brought Magteld’s iPad to the table so she could read while the boys got ready for school. We set off on the scooters, and by the time Euan and I returned, ten minutes or so later, the duty nurse had usually arrived. At weekends I ran to the beach while she was in the house, finding relief in the open sky and the cool, firm sand. There were three nurses, all women, working in rotation, and Magteld quickly struck up a rapport with each of them. They gave her a shower and counted out her pills into the little plastic boxes, marked for every day of the week. Then we sat and talked, about Magteld’s upcoming appointments, how she was feeling, and, once that was done, about life, work, the weather and children.
On fine days we went for walks, up to the little square at the end of the street or to the supermarket. I flipped down the footrests in her wheelchair, slipped her shoes onto her feet and pulled her arms into her jacket, feeling the grim protrusions in her spine as I smoothed it against her back. Then she settled back into her wheelchair and we rolled over the ramps and out of the door, flanked by the boys. Sometimes Euan or Adam pushed the chair, in keeping with the doctors’ advice that they would benefit from taking an active role in her care. They complied, but uncomfortably, and at junctions I took over to protect her back from the jutting kerbs.
We had lunch in the garden, a southwest-facing patio bordered by mature trees, which needed only a kiss of sunshine to feel pleasantly warm. Some days I would roll her down to the fish stall at the crossroads and treat us to a prawn salad, or kroketten with mustard, the original Dutch fast-food delicacy. After lunch she would nap until I fetched Adam from school, while Euan watched television or played with his Lego in his bedroom. At the weekend we went to a beach café with Sanneke and Sjoerd, savouring coffee and toast and the warm salty breeze while the children ran down to paddle in the lapping waves. In the evenings we sat in front of the television, like a regular family, Magteld watching Masterchef with the children while I cooked dinner.
One day Euan came downstairs and beckoned me up to his room. His Lego, which was usually scattered all over the floor, had been tidied away into the plastic containers. He laughed at my astonished reaction. And then I realised that his mother, confined to the ground floor, had still never been in his bedroom, so I fetched the iPad and filmed both the boys’ bedrooms, so that Magteld could see what their new domains looked like.
The hospital’s radiotherapy unit was in the basement, through a maze of corridors and double doors, past storage rooms stuffed with rubber tubing and alien devices. The last stage was an old lift accessed through two heavy swing doors, which could only be pushed open manually. It was an unlikely thing to encounter in a Dutch hospital, as if we had accidentally intruded on an old film set. If Euan and Adam were with us they took on the role of door attendants while I wheeled Magteld through. I left her with a pile of magazines, a book and Euan, who played quietly on the iPad or read as she sat in the treatment room, while I dashed to the shops or fetched Adam from school.
Nearly every minute of the day was timetabled: in between appointments I had to make time for cooking, cleaning, washing, shopping, and still let the boys out to play. Maintaining the illusion of normality was crucial. In this respect we were fortunate, since The Hague has a wealth of play-parks, most of them festooned with gleaming apparatus. Dutch cities sometimes look as if they were not so much designed as poured from a giant mould; as the old joke goes, God made the world, but the Dutch improved it.
Night was the most fraught time. Magteld wilted as darkness closed in but was often too restless to sleep. Sometimes she lay in bed, reading or trying to settle into her pillows, while I sat in the dining room with a book, or on the computer, or just stepped back for a moment from the whirl of the day. Sometimes, in the murky realm between wakefulness and sleep, panic would take hold, and I would shuffle wearily into the bedroom to calm her.
The first night after she came home was exhausting. Every hour or so she cried out for painkillers, or a pear ice-cream, or sweets, or more medicine and usually another ice-cream. Every time I lurched out of bed I felt like a sodden towel being retrieved from a toilet bowl. An hour’s unbroken sleep was a rare treasure. As day broke, it brought a new cycle of chores, and I had to scrape together the energy to make breakfast, transport Magteld from bedroom to dining table to toilet to sofa to car, do the housework and keep the boys occupied. I had the sleep pattern of a new father, with none of the euphoria. It might go on for several months yet. But the fear of it stopping was even worse.
Fatigue was seeping back into our lives like a river that has burst its banks. At some point during one of those early nights I turned to her and confessed I wasn’t sure if I could cope with it.
She gritted her teeth
and half closed her eyes. A molten core of anger rose in her voice. ‘Don’t you dare say that,’ she seethed.
‘I’m just being honest,’ I said.
I was shocked to see she was crying. As I tried to explain she became more distressed. She began hitting me, frenziedly. I felt the sting of her fingers as her limp fists slapped against my chest. ‘Just don’t send me back to the hospice,’ she croaked.
Those awful, impotent slaps made me feel wretched. Months later, when I spoke to one of the nurses who cared for her, she admitted candidly, ‘She was strong, but she was a very sick woman.’ For the first time I saw clearly why Magteld had been so determined to discharge herself from the hospice. She had decided, rationally and in full cognisance of the risks, that she would rather spend what time she had in her house, with the people she loved. She preferred a day in the sunlight to a week in the shade. What horror, what resolve, what courage. Little wonder, then, that when I threatened to desert her as she hovered on the rim of oblivion, she had lashed out. If I failed now, I would fail at love.
Over the next few nights I developed a routine. Before going to bed I set out a macabre buffet on her side table: paracetamol, a bottle of morphine, a small bowl loaded with her favourite sweets. She would try to get through the night on two pear ice-creams. My spells of sleep stretched from an hour to two, sometimes two and a half. It was tolerable, no more. Relief came with the glow of dawn, the hour of breakfast, and the arrival of the duty nurse to begin the next day’s cycle.
For the epigraph to her memoir, Love’s Work, the philosopher Gillian Rose chose a saying attributed to the Russian monk and saint Silouan the Athonite: ‘Keep your mind in hell, and despair not.’ Love’s Work was written while Rose was dying of cancer and is an intense meditation on the meaning of life and love. It may seem puzzling at first glance for a modern academic to adopt the words of a barely literate ascetic. Silouan claimed most of his wisdom was received in visions from God during a life of unstinting prayer; Rose lived a life of studied eroticism, both in the primary sense and that of having an endless passion and curiosity for life. So what inspiration did this secular prophet of love draw from a man who dedicated his life to a private dialogue with his deity?
All the Time We Thought We Had Page 14