‘I may not have a long life, but I have a good life,’ Magteld wrote, a week after learning she would not grow old.
Talking about death is never easy, and talking about the imminent demise of somebody you love, when they’re sitting having coffee with you in the kitchen is almost unthinkable. The writer Michel Faber, whose wife Eva died of multiple myeloma around the same time as Magteld, put it like this: ‘When your partner is dying of a disease that you don’t have and you know that you are going to outlive her, they are on a different planet. They’ve already gone somewhere where you can’t follow.’
Magteld rarely gave in to fear or self-pity. When we lived in Edinburgh she had once burst into tears spontaneously on a bus and told me she didn’t believe in happiness. Yet in her last days she was serenely calm for the most part. I wondered if she only felt able to be truly, unconditionally happy in the final stages. She never regretted the past, only the lost future.
She prepared her final scene carefully, but when she raised it in conversation she was studiedly casual, as if describing a temporary setback. She knew how she wanted to be at the end and set it out clearly: in her own home, preferably in her own bed, with her three boys – Euan, Adam and me – beside her. Nobody else. I nodded. Silence enveloped us for a moment. Then she looked up, clutched my hand and gave me that familiar smile.
I hated the fact that I couldn’t be with Magteld in the place she had gone to in her mind. She lived in the exalted present; the best I could do was suspend my belief in the future. More troubling was the growing awareness that she was protecting me from it. I didn’t belong there. Dying is something you have to face alone, even in the midst of people you love. She had an instinct to spare me, and the boys, from the empty terror.
Only once can I remember her letting her guard down. We were sitting at the kitchen table in Glasgow, going over her last wishes, when she looked across at me and said, ‘I won’t feel it, will I? The eternal blackness?’
I hesitated a second. ‘I don’t know,’ I said. I fumbled for words that might reassure. ‘It won’t hurt. I don’t think it will.’
I reached across and grasped her warm, trembling fingers, and she smiled and rubbed my hands.
* The Guardian, 20 September 2011; http://www.theguardian.com/politics/2011/sep/20/philip-gould-cancer
8
Running was my relief, and during Magteld’s treatment I relied on it even more. Not so much for the endorphin rush, of whose benefits I’ve never really been convinced, but because of the discipline and sense of rhythm it bestows. Cordoning off an hour of the daily schedule to disconnect from smartphones, rolling news and the whole plastic soup of modern life was like visiting an oasis of pure time. Often I thought of nothing more than the rhythm of my feet slapping the wet paving stones or the steady slope up to Newton Mearns or the numbers on my stopwatch. But when I got home I found myself calmer, nimbler and more decisive. An hour dashing through the streets typically generated two or three more productive ones later in the day.
Once Magteld’s treatment resumed, there were fewer opportunities to go running, and often I set out feeling a sense of displaced guilt that I could still exercise unrestricted. I was also dogged by the fear that her health would take a drastic turn while I was away. Every time an ambulance flashed by I would track the fading trail of its blue lights to see if it was heading towards the house.
One Tuesday afternoon I set off on my regular run to the Mearns shopping centre, a four-mile shallow climb through Glasgow’s southern suburbs and back home again. The pain and numbness in Magteld’s spine had spread to her forearms, and she was barely able to raise her arms above the elbow. The physiotherapist, whom she had seen the previous week, was unconvinced by the GP’s explanation of a torn shoulder and referred her to the hospital for a scan.
My run took around an hour. When I got back Magteld was standing at the foot of the stairs, her face screwed up in distress.
‘Gordon, you’ve got to take me to the hospital,’ she said in a quavering voice. The pain had engulfed her so quickly in the past hour that she had phoned the NHS advice line and been told to go straight to A&E. It was a key-change moment.
The next hour is a blur. I can’t remember if I managed a shower or simply threw on my tracksuit and jumped into the car. Somebody must have come round to mind the boys, because they weren’t with us when we got to the hospital. I led Magteld out to the car, feeling how she juddered with every step as if she was walking barefoot across a bed of thistles. I have no recall of where we went when we got to the hospital, or at what point a bed was found for her, or how I explained it to the children.
She did not climb those stairs ever again, or take another step unaided. And she would not catch the ferry to Holland with us at the end of the month.
The next day, on the hospital ward, she was sitting up in bed, supported by two pillows to protect her spine. Her movement was restricted to her lower arms and neck. If she tried to get up and walk now, the nurses warned, her legs would collapse under her.
Two days later an ambulance took her across the city to the Beatson for an MRI scan. That would tell her what convulsions were going on in her body. Her father followed in convoy in his car, while I stayed at home with the boys. Afterwards she was transported back to her bed in the Victoria Infirmary. The whole round trip lasted several uncomfortable hours.
We had the results from Dr Barrett in the morning. The xeloda had failed. It had eased the inflammation in her lungs but not slowed the cancer’s progress. It was a crushing blow, a cruel deception. The tumours had rampaged up and down her spine and ripped into her nervous system. The cancer had not stopped at her back but marched on into her liver. Her cells were in full mutiny.
There was still hope, Dr Barrett insisted, but I saw a trace of shock in her face that hadn’t been there before. Even the most experienced cancer specialist cannot be unmoved by the sight of a once healthy young woman imploding despite your fervent efforts to save her. Magteld wanted to know everything, except for one detail: she still refused to hear her exact prognosis.
She would have a short course of radiotherapy, four rapid blasts to try to unfreeze her spine and contain the spread of the tumours. Dr Barrett advised her to fly out to Holland as soon as possible after that so she could begin a new course of treatment. It was four weeks until the ferry sailed, but even that was too long to wait now.
After speaking to Magteld, Dr Barrett took me into a side room. Together we scoured websites of hospitals in The Hague, looking up colleagues she could communicate with. She needed my help to navigate the Dutch information.
‘You need to get her over there as soon as you can,’ she said. ‘Once you get to The Hague you may only be looking at a very few weeks.’
I nodded mutely. I think I thanked her.
It was Tuesday, 1 April. Back home I booked Magteld and her mother on to a flight to Amsterdam the following Monday. Luc would put her luggage in the car and take it across on the ferry. I rebooked our crossing: Euan and Adam could join her the following week, then I would fly back to Glasgow, finish packing the house and leave Scotland by plane on 25 April. That was the date we had marked for our departure back in January, in a different epoch. The smiley face Magteld had drawn in the diary now seemed to mock me, like a gargoyle, from the page.
From this point on Magteld’s decline was precipitous. She went downhill like a runaway mine cart. Time itself seemed to metastasise and lose its integrity. When I came to write this memoir and tried to put the pieces together it was like reassembling a shattered teacup. Her blogs, our Facebook entries, records of flights and hotel bookings, the diaries where she logged her hospital appointments – all conflicted with the jumbled shards in my mind. For instance, to my recollection she went into hospital a few days after we came back from Edinburgh, but the records showed there was a two-week ceasefire in between, which was blurred out in the chaos that followed.
Even so, I don’t recall any sense that she was hurtlin
g towards the end. Had we been aware how compressed our time was becoming we might have wasted it in a mindless panic.
It was important for the boys to maintain as much of their routine as possible. Luc and Diny were with me most evenings, cooking and covering. Euan was rehearsing for a show to mark his school’s fiftieth anniversary, in which he and three classmates were performing as The Beatles. Magteld’s hopes of watching him had been blown away by cancer, but at least Euan had something to focus on.
As I walked back with him from his Scout group one night I tried to explain why his mum was not at home. She was in hospital, I said, and would be staying there a few more nights so the doctors could look after her.
‘Does that mean she won’t come to our house any more?’ he asked without looking at me.
I could have disintegrated on the spot. ‘Your mum loves you,’ I said, spluttering the words. There were more days like this to come, I knew, and no sheltering from them.
Gordon Aikman described how ‘the progressive nature of [Motor Neurone Disease] means that as soon as you adapt to one challenge, another is tapping you on the shoulder’. Cancer is usually a more gradual disease than MND, which must feel like having your body stripped of its wiring from the inside. But in Magteld’s case the comparison was apt: no sooner had she adjusted to her reduced lung capacity than the tumours mounted an assault on her spinal column. Two weeks earlier she had walked home from the physiotherapy clinic, a mile away. Now the nurses at the Beatson were having to scramble a wheelchair for her so she could be discharged. She needed specially moulded cutlery to guide her weakened hands to her mouth, and a grabber tool to reach things she could no longer stretch for.
When I visited her on the Sunday she was being taught to walk with a Zimmer frame. One slippered foot on the ground, then a little shuffle, then a deep, hissing intake of breath and a careful shove forward with the frame. Five minutes of this brought her to the other side of the room, where she rewarded herself by sinking into a chair.
Even now, though, she refused to bow her head. We went upstairs together to the Friends of the Beatson room, run by a respite charity similar to Maggie’s. There were jigsaws and games for the boys, books and magazines and a television. Magteld had her hair cut. It was a small but vital acknowledgement of her humanity. As soon as she came home she posted her blog again. ‘I’m not fighting cancer, as it’s impossible to fight against your own body,’ she wrote. ‘I’m living and enjoying every second of it. So I’m not losing a battle, but making the most of it.’
What followed was more like a heist movie than the preparations for someone’s last weeks. Magteld was flying to Holland on Monday, but we wouldn’t get the keys to the house for another week and three weeks of renovation work were lined up before we could move in. We had five days to find somewhere for a terminally ill, wheelchair-using cancer patient to live and die, in a different country.
Sanneke set about investigating options in The Hague. She found the Jacobshospice, an intimate six-bed care facility where nurses and a rolling army of volunteers worked to take the strain out of dying.
The word hospice was as sharp and heavy as a guillotine blade. This was not how Magteld had planned her exit. But there was no alternative. I looked at the Jacobshospice website with her: a procession of soothing slow-motion videos, with graceful images and a rocking-chair voice-over. Magteld wept as she watched it. ‘It’s all old guys,’ she said, seething again at the way she been catapulted into life’s final phase, dependent on others to move, dress, wash and feed herself, and with oblivion on the horizon.
Sanneke messaged me. There was a room available in the hospice, but to qualify for it Magteld had to have a prognosis of three months or less. Being a Dutch institution, they needed a signed declaration from a medical professional.
‘I don’t think that’s going to be a problem,’ I replied.
I gave Dr Barrett Sanneke’s email address so she could arrange the documents and feed the paperwork chimera. The next day Magteld’s place in the hospice was confirmed. When she arrived on Monday night she would have a room to die in.
The Beatson staff wanted Magteld to stay in hospital until she flew out on Monday afternoon. She could spend the time learning how to use her wheelchair and practise with her new disability cutlery set. Magteld, however, intended to have a weekend with her family. She was as unbending as a medieval martyr who feels the executioner’s sword swoop down on the back of their neck.
Some rapid improvisation was required. She could no longer climb the stairs, so we would sleep on the sofabed in the living room, which was only really wide enough for one and a half people. The bathroom was also upstairs, so I had to source a commode from the Red Cross. We also needed to install a ramp at the front door. I was quickly learning the hard truth about disability: every journey, even from the street to the front door, is a negotiation. For all the city’s experience with chronic ill health, nowhere in the million-strong conurbation of Greater Glasgow could we find a mobility ramp at short notice. In desperation I procured two long planks from the local DIY store, nailed them to a shorter piece and draped them over the door frame. Once her four days of radiotherapy finished on Friday morning, Magteld could come home.
She took one look at the flimsy wooden ramp, already sagging with the burden of two days’ incessant rain, and demanded to be lifted over the threshold. Luc and I grunted and lifted the chair. We had lunch, washed down with a glass of prosecco. ‘A toast to life,’ said Magteld. She spent the weekend confined to the house and received no visitors. The Glaswegian spring weather was on her side, sending her off with a week-long downpour. A few neighbours rang the doorbell or stopped me in the street, but Magteld refused to meet them in her weakened state. I had to tell them that they would not see her again.
We slept together in the living room, with the commode skulking in the corner. Magteld had a cornucopia of pills to take, including laxatives to counter the combined effect of the anti-inflammatory drugs and her immobility. I had to get used to manoeuvring her from the chair to the bed, swinging her legs in and then rolling her across so she could lie beside me. In the night I had to reverse the procedure in semi-darkness every time she needed the toilet. The laxatives made this a not infrequent occurrence. Then I ran upstairs in a daze to the bathroom to empty the pot. Three nights went by like this. During the daytime we packed bags, watched television and chatted.
Adam despised the commode. He scowled at it like a cat eyeing a new pet hamster. It had an imitation leather seat to make it resemble a regular chair, but like cheap plastic surgery or black hair dye on a leathered face, the facade only highlighted the thing it was trying to conceal. Adam went over to it, flipped up the seat to reveal the plastic tub, replaced the seat, sat on it as if testing its sturdiness, and resumed scowling, without speaking a word. The commode represented the drastic way his mother had become disabled, and Adam hated her disability. So did I. All the entreaties in the world to look beyond the disability and value the person couldn’t soften the reality. When I tried to look past her dysfunctional legs, or felt the knobbly lumps in her spine, I saw cancer gnawing away at her. I didn’t want to make space for it or be positive about it. I wanted to destroy it.
Sometimes I couldn’t avoid asking myself how long this exhausting torment would last. When I woke in the night to fetch her painkillers, or a glass of water, I felt a sense of resentment swell in the fog of broken sleep. I wanted to care for the woman I loved, but there were other, less generous emotions. A future was coming which contained only the boys and me, with Magteld as a memory hanging on the walls. Sometimes it was easier to think about this than attend to the day-to-day demands of lifting a sick, diminished version of my wife in and out of bed and fetching her medicines. But these were the wages of love, the agreement I had made in gentler times, to love and cherish her, in sickness and in health, till death us did part.
In an alternative future we stood together on the deck of the ferry, holding hands in the morni
ng sunlight as our new homeland materialised on the horizon, barely rising above the lilting waves. In reality Magteld left Glasgow in a black cab, like a villain expelled from a soap opera, accompanied by her mother.
Luc had left in the morning to catch the ferry, taking Magteld’s luggage with him. All being well, she and Diny would touch down in Amsterdam before the boat had left port. She travelled light, taking a handbag stuffed with bottles of pills and an explanatory note from the doctor.
For the next eight days we would be separated by the North Sea again. We had email now, and perhaps she could rig up Skype in the hospice, but the gap had never felt so wide. It was a calculated gamble that neither of us would speak of but that her croaky voice and hacksaw-like breathing wouldn’t let us forget.
It was still raining as the taxi pulled up outside the door. I wheeled her up, over the ramp and backwards through the front door, affording her a last look at the house as she retreated down the pathway. The driver wheeled her up the ramp and strapped her in. As she cast one last glance at her former home, with its teeming hive of memories, I clutched her limp arms and pressed my lips tightly against hers. As the doors slid shut I thought, this kiss will be separated from the next by eight days and several hundred miles of cold, churning water. Then the driver pulled away and the taxi dissolved into the black rain until only its red tail lights, hovering above the roadway, remained.
Part Two
The Hague
All the Time We Thought We Had Page 11