Читать книгу Dying - Cory Taylor - Страница 7

About two years ago I bought a euthanasia drug online from China. You can get it that way, or you can travel to Mexico or Peru and buy it over the counter from a vet. Apparently you just say you need to put down a sick horse and they’ll sell you as much as you want. Then you either drink it in your Lima hotel room, and let your family deal with the details of shipping your remains home, or you smuggle it back in your luggage for later use. I wasn’t intending to use mine straightaway, and I wasn’t fit to travel all the way to South America, so I chose the China option.

My Chinese drug comes in powdered form. I keep it in a vacuum-sealed bag in a safe and secret place, along with a suicide note. I wrote the note over a year ago, a few days before I was due to have brain surgery. I had melanoma in the part of my brain that controls the movement of my limbs on the right side—incurable, no guarantee that the cancer wouldn’t return after the surgery. By then I had deposits of melanoma elsewhere too, in my right lung, under the skin on my right arm, a big one just below my liver, another pressing on my urethra, which had necessitated the insertion in 2011 of a plastic stent to keep my right kidney functioning.

I had been first diagnosed in 2005, just before my fiftieth birthday, after a biopsy on a mole excised from the back of my right knee came back positive as a stage-four melanoma. Since then the progress of my disease had been mercifully slow. It was three years before it showed up in my pelvic lymph nodes and another couple of years before it began to spread to other parts of my body. I had two rounds of surgery, from which I recovered well, and in between I suffered no debilitating symptoms. In that time I managed to keep my illness a secret from all but my closest friends. Only my husband, Shin, knew the whole story, because he’d accompanied me to my regular scans and specialist appointments. But I had kept the details from our two teenage sons, trying, I suppose, to protect them from pain, because that was my job as their mother. Then, in late December 2014, a seizure left me temporarily helpless as a baby and I could no longer deny the obvious.

So we convened a family meeting in our home in inner-city Brisbane—Shin, our younger son Dan, his girlfriend Linda, our older son Nat and his wife Asako, who dropped everything and flew home from Kyoto where they’d been living for two years. Over the next few days, I took them through all the paperwork they’d need to access if the worst happened: my will, their Powers of Attorney, my bank accounts, tax, superannuation. It helped me to feel that I was putting my house in order, and I think it helped them because it made them feel useful. I even revealed my interest in euthanasia drugs and evasively said they were on my wish list for Christmas. I called it my Marilyn Monroe gift pack.

‘If it was good enough for her, it’s good enough for me,’ I said. ‘Even if I never use it, just knowing it’s there would give me a sense of control.’

And, to the extent that they didn’t object, I think they understood.

My suicide note was by way of an apology. ‘I’m sorry,’ I wrote. ‘Please forgive me, but if I wake up from the surgery badly impaired, unable to walk, entirely dependent on other people to care for me, I’d prefer to end my own life.’ I also repeated what I’d told them a hundred times to their faces: how much I loved them all, and how much joy they had brought me. Thank you, I told them. Talk to me when I’m gone, and I’ll be listening. I wasn’t sure that was true, but it was as metaphysical as I was ever going to get, and it did make a kind of sense at the time, given that I was already writing to the living from the point of view of the dead.

As it happened, I came through the surgery, not entirely unimpaired, but not too badly off. The tumour in my brain was successfully removed. My right foot will never fully recover its strength, so I limp, but I have normal movement in the rest of my right side. And, over a year after the operation, I’m still here. Nevertheless, my situation remains dire. There is no cure for melanoma. A few drugs are being trialled, with varying results. I’ve been involved in three drug trials, and I can’t say for certain whether any of them slowed the disease. All I do know is that, despite my oncologist’s best efforts, I eventually ran out of treatment options. It was then that I became certain I was coming to the end. I didn’t know when, or exactly how, I was going to die, but I knew I wasn’t going to make it much beyond my sixtieth birthday.

With my health deteriorating steadily, I started to focus on the question of suicide like never before. After all, in a first for me, I’d gone to the extent of breaking the law and risking prosecution, in order to obtain the means. My stash calls to me day and night, like an illicit lover. Let me take you away from all this, it whispers. My drug would go straight to the sleep centre of the brain in the time it takes to finish a sentence. What could be easier than to swallow a fatal dose and never wake up again? Surely that would be preferable to the alternative, which is a lingering and gruesome demise?

And yet I hesitate, because what appears to be a clear-cut solution is anything but. Firstly, there are the practicalities of my taking such a course of action. As the law stands in Australia, I would have to take my drug alone, so as not to implicate anyone else in my death. Even though suicide is not a crime, assisting a person to suicide is illegal and is punishable by a lengthy jail term. Secondly, there are the emotional repercussions for others should I do the deed, be it in a hotel room somewhere, or on a lonely bush track. I ask myself if I have the right to traumatise some hotel cleaner, or some bushwalker, unfortunate enough to discover my corpse. Of paramount concern to me are the repercussions for Shin and the boys of my taking my own life, for as much as I’ve tried to prepare them for the possibility that I might, I know the reality would shake them to the core. It worries me, for instance, that my death certificate would read ‘suicide’ as cause of death, with everything that the term implies these days: mental angst, hopelessness, weakness, the lingering whiff of criminality—a far cry from, say, the Japanese tradition of seppuku, or suicide for honour’s sake. The fact that cancer was actually my killer would be lost to posterity, as would the fact that I am not, by any fair measure, mad.

Faced with all of these obstacles, I contemplate my bleak future with as much courage as I can muster. I’m lucky to have found an excellent palliative care specialist and an exceptional home nursing service, so, along with my family and friends, I have as much support as I could wish for. If I were, however, to express a wish to end my own life, none of that support would be legally available to me. I would be strictly on my own. Our laws, unlike those in countries such as Belgium and the Netherlands, continue to prohibit any form of assisted dying for people in my situation. It occurs to me to ask why. I wonder, for instance, if our laws reflect some deep aversion amongst medical professionals here towards the idea of relinquishing control of the dying process into the hands of the patient. I wonder if this aversion might stem from a more general belief in the medical profession that death represents a form of failure. And I wonder if this belief hasn’t seeped out into the wider world in the form of an aversion to the subject of death per se, as if the stark facts of mortality can be banished from our consciousness altogether.

Surely there couldn’t be a more futile exercise, for if cancer teaches you one thing, it is that we are dying in our droves, all the time. Just go into the oncology department of any major hospital and sit in the packed waiting room. All around you are people dying. See most of them on the street, and you’d never know it, but here they are lined up, waiting for the latest results of their scans, to discover if they’ve beaten the odds this month. It’s a shocking sight if you’re unused to it. I was as under-prepared as anyone could be. It was as if I had stumbled out of a land of make-believe into the realm of the real.

That is why I started writing this book. Things are not as they should be. For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been. At least that is how it feels to me.

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I had never seen anybody die. Until my mother became demented I had never even seen anyone gravely ill. My mother’s decline was slow at first, and then very fast. Towards the end she was barely recognisable as the mother I had so loved and admired. I was out of the country when she finally died, but I was there in the months preceding her death and I saw the ravages she suffered, the pain and humiliation, the loss of independence and reason.

She was in a nursing home when she died, a place of such unremitting despair it was a test of my willpower just to walk through the front door. The last time I saw her, I stood helplessly by while she had her arse wiped clean by a young Japanese nurse. My mother was clinging onto a bathroom basin with all of her meagre strength, while the nurse applied a fresh nappy to her withered behind. The look in my mother’s eyes as she turned and saw me watching reminded me of an animal in unspeakable torment. At that moment I wished for death to take her quickly, to stop the torture that had become her daily life. But still it went on, for a dozen more months, her body persisting while her mind had long since vacated the premises. I could not think of anything more cruel and unnecessary. I knew I had cancer by then, and a part of me was grateful. At least I would be spared a death like my mother’s, I reasoned. That was something to celebrate.

It was my mother who introduced me to the debate around assisted dying. She first came across the voluntary euthanasia movement, as it was then known, some time in her sixties, and I knew it was a cause she continued to support, because she made a point of telling me. Back then I took far less notice than I should have. My mother was asking me for help, but it wasn’t clear what kind of help she wanted. Perhaps just a bit of encouragement to look into the problem more closely, to obtain the necessary means if it came to that. I wasn’t very receptive. In those days there was nothing wrong with my mother, or with me, so her arguments in support of the concept of assisted dying were purely academic. Of course, by the time they were real and urgent, my mother had left it too late to put theory into practice, and her mind had lost its edge, so that even the most well-meaning doctor in the world could not have helped her, despite her years of devotion to the cause.

I wasn’t there when my father died either, also in a nursing home, and also from complications arising from dementia. My parents had divorced some thirty-five years previously and I had subsequently become estranged from my father. But one of my abiding memories of him is his fantasy solution to the indignities of old age. He told us—me, my mother, and my older siblings—that he planned to sail out into the Pacific Ocean and drown himself. He repeatedly baulked at the first hurdle, however, by never obtaining a boat. He would read boat magazines and circle the For Sale ads in them. He would drive long distances to look over boats he liked the sound of, but he would always find a reason not to buy. Money was short, or he didn’t want to sail alone. At one point, he even asked my mother to buy a half share and to crew for him, an offer she declined. Maybe she should have taken him up on it. Maybe they should have sailed off into the sunset never to return; instead they lived on and died badly.

No doubt my horror at how my parents ended their days influenced me to look into ways I might improve things when it came to my turn. With this in mind, soon after I was diagnosed with cancer, I followed my mother’s lead and joined Exit International, wanting to get up to speed on the latest developments in the assisted dying field. I also joined Dignitas in Switzerland, where it is legal for foreigners to obtain assistance to die, provided they are suffering from a terminal illness. This was an information-gathering exercise to explore the choices available to me, other than those offered by my doctors. I don’t wish to disparage the doctors who have cared for me over time. Individually they’ve been extraordinary, and of course I owe them a debt of gratitude. Apart from the palliative care specialists I’ve spoken to, however, none of my doctors ever raised the subject of death with me, a fact I still find mystifying.

So another motive for joining Exit was to find a forum for simply broaching the topic, challenging the taboo that I felt was preventing my doctors from speaking openly to me about something so pertinent. Despite the ubiquity of death, it seems strange that there are so few opportunities to publicly discuss dying. Exit meetings are the only occasions when I’ve found it is possible for people to speak about death as a fact of life. The mood of the meetings is upbeat. My local chapter meetings are usually attended by about forty members, many of them elderly, but with a sprinkling of younger people eager, for whatever reason, to exchange information about ways and means to die. There is an inevitable cloak-and-dagger element to these gatherings, given that mere advice regarding suicide has the potential to be construed as a criminal offence. But this only adds to the atmosphere of bravado and high spirits. And of course there is humour. Did we all hear about Tom, nudging ninety, who decided to take his helium bottle up to his local cemetery and gas himself there? Apparently he figured the dead are unshockable. And, by the way, anyone who is interested in a refresher course on helium, please sign on for the upcoming workshop as soon as possible as numbers are limited. It might be any meeting of any common interest group, a bowls club, or a bird-watching fraternity, except that, after the tea-break, it’s back to rating cyanide and nitrogen gas according to ease of use, and speed.

The chief benefit of these meetings to me is their spirit of camaraderie. It takes courage to contemplate one’s own death, and, as I said before, it is inexpressibly lonely. To find companions who share your desire to know more, to take the initiative, and to laugh in the face of our shared mortality, is a gift. How different from the experience of the hospital waiting room, where you sit in a glum herd with the overhead televisions blaring, guarding your dirty little secret until such time as your name is called. Whether it’s good news or bad, the message is the same. In hospitals we don’t talk about death, we talk about treatment. I would come out of consultations feeling as if my humanity had been diminished by the encounter, as if I’d been reduced to my disease alone, as if everything else that defines me had fallen away. By contrast, I came home from my Exit meetings emboldened, convinced that Camus was right: suicide is the only serious philosophical question.

Exit encourages its members to keep the conversation going by forming smaller coffee-and-chat groups with friends. Ours is chaired by Jean, a sprightly widow in her early eighties, who lives not far from me, in Kangaroo Point. There’s a cafe near her flat where we can sit outside at a secluded corner table. We like to avoid being overheard. Counting myself, we are six regulars. I get a lift to meetings with Andrew, who has kidney cancer, and Colin, who has early stage Alzheimer’s disease. Tony arrives on the bike he manages to ride despite his Parkinson’s shakes. And Carol drives an hour and a half from the suburbs of the Sunshine Coast. There is nothing physically the matter with Carol, but after years of abuse, both emotional and physical, from her husband, she survives on a cocktail of anti-depressants and anti-anxiety medications. Her mental suffering makes her question the value of going on. The talk is remarkably intimate. Everyone knows why we’re there. It’s to comfort one another, to offer companionship. We’re like the last survivors on a sinking ship, huddled together for warmth.

I don’t mean to give the impression that my companions are all hell-bent on doing themselves in at the first opportunity. In my experience, our meeting to discuss suicide does not imply that we’re all firmly committed to ending our own lives. It is more that we wish to contemplate what it would be like if that option was available to us within the same type of regulatory framework that exists in countries where assisted dying is legal. But this is not to say that anyone I’ve talked to about choosing to end one’s own life takes the matter lightly. We talk about this in the car driving home from our coffee-and-chat meeting. Even if they had the means, Andrew and Colin doubt they could ever go through with it.

‘It’s too selfish,’ says Andrew, and I agree, thinking of the lonely hotel room and the traumatised housemaid. ‘It’s like you’re just saying “fuck you” to all your family and friends.’

Which is why my drug remains unused, because of some moral qualm I share with Andrew about the harm one can inadvertently do to others, by going rogue and acting alone.

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It surprises me that I have any qualms at all, since I have never thought of myself as a person of particularly high moral standards, and I have no formal religious background on which to hang a moral framework. And yet one cannot face death without reflecting on questions of religious faith, or the lack of it, and on matters of morality, or its absence. For instance, I wonder whether doctors here are discouraged from talking about death with their patients by the strictly scientific and secular nature of the way our medicine is taught and practised. It could be that other, older medical traditions might understand and embrace grief and loss better than we do. And I wonder about the morality of the government subsidising expensive experimental cancer drugs, when other worthy areas of research go begging. As an example, the last melanoma drug I took, between 2014 and 2015, was priced at $8500 a dose, to be administered every three weeks, for an indefinite period. I was the beneficiary of a free compassionate release of the drug, but it was very soon listed on the Pharmaceutical Benefits Scheme and attracted government subsidy, despite its limited efficacy. Lastly, I question the religious motive driving opposition to assisted dying for terminally ill patients such as myself. Could it be that we, whether or not we have religious beliefs, are being obstructed in our desire to die well by people who believe that God frowns on individual choice in the manner of dying? Or worse still, that God intends us to suffer? I don’t know the answers to any of these questions, but I think they’re worth debating.

So many people ask about your religious beliefs when you’re dying. I remember my general practitioner asking if I was religious, after I told him I was running out of treatment options. He had just written me a referral to a palliative care unit, which happened to be based at a Catholic hospital.

‘Are you a church-goer?’ he said.

‘No.’

‘That’s good.’

I asked him why and he told me that in his experience people with religious beliefs have a harder time dying than non-believers like me.

‘I can’t be certain why this is,’ he said, ‘but it probably has to with attitudes to pain, and whether a person believes it serves a purpose.’

I told him that I was up for any and all forms of pain relief. ‘Or better still, just shoot me.’

‘I’ll make a note,’ he said.

I duly showed up for my appointment with the palliative care specialist at the Catholic hospital. I wasn’t predisposed to like the hospital after what my family doctor had said. And it didn’t help that my mother’s nursing home, also a Catholic institution, happened to be part of the same complex. So some of the despair I’d always felt visiting my mother shadowed me as I made my way up to the consulting rooms on the fifth floor. As soon as the lift doors opened there was the same smell as the nursing home next door, stale urine masked with something artificially floral, the two scents fusing into a cloying fug. A corridor led me past the chapel, the entrance to which was festooned with sombre paintings and photographs of deceased nuns. Naturally enough, there were crosses everywhere, and images of Christ, intended to provide comfort to the faithful. But the iconography put me off balance, as if I was about to sit a test for which I’d done no preparation.

My meeting with the doctor was less reassuring than I’d hoped, even though he was softly spoken and sympathetic enough. Sitting in on the meeting was an older woman, a nurse, who, like the doctor, rarely smiled. If this had been a school I was assessing, to see if it was suitable for my children, I would have decided against it instantly, but I was going through a far more bizarre exercise, trying to form a judgment about the place where I might soon have to die, and finding it disappointing, even frightening. I thought of my drug. If it came down to a choice between dying in this place, and dying by my own hand, I knew which I’d prefer. It was only common sense.

Thankfully I have since found a palliative care specialist I like, and he has referred me to a home-nursing service run by Buddhists. The nurses aren’t Buddhists but the organisation was established by, and is supported by, monks and nuns who have trained in Tibetan Buddhism. I have had a couple of visits from one of the nuns, not formal counselling sessions, but conversations about how I’m dealing with my situation. The question of religion has, of course, come up in these chats, but mainly because I’m curious to hear from the nun how she came by her faith. I gather it was a gradual process of realising what was right for her, and of studying and meditating for years before she was allowed to commence her formal training. What I am most curious to know is how she views death. I have already told her that I don’t believe in an afterlife, but she begs to differ.

She describes to me how the body closes down at the end, leaving nothing behind but an essential spirit. Sometime after the body breathes its last, the spirit is released into the ether.

‘I’ve been there,’ she tells me. ‘I’ve seen it over and over again.’

‘What happens next?’ I ask.

‘The spirit searches for its next physical embodiment.’

‘Why does it do that?’

‘Desire.’

I know enough about Buddhism to understand that desire is seen as a curse, and when the nun starts to describe the endless cycle of reincarnation that is the fate of the average soul, I can see why one might want to be rid of it. That is not the part of her story that interests me, however. It is her proposition that our essence is perceptible. She has seen a lot of people die. If she says she has witnessed the body give up the ghost, then who am I, a complete novice in the field, to argue? And if she’s right, I want to know whether it makes a difference how we die—fast or slow, violently or peacefully, by accident or by our own hand?

‘What do you think of assisted dying?’ I ask.

‘I’m against it,’ she says. I had a feeling she might be. I have yet to come across anyone involved in palliative care who isn’t against it. But I like the nun, so I am not about to argue with her. I like how serene she is, and how she looks directly at me when she speaks. I have even decided to invite her to say a prayer at my funeral, one she has picked out from The Tibetan Book of Living and Dying. It strikes me that this might provide an element of ritual to the occasion that might otherwise be missing.

For this is one of the most lamentable consequences of our reluctance to talk about death. We have lost our common rituals and our common language for dying, and must either improvise, or fall back on traditions about which we feel deeply ambivalent. I am talking especially about people like me, who have no religious faith. For us it seems that dying exposes the limitations of secularism like nothing else. I felt this most acutely when I turned to psychology for some advice. My family doctor had mentioned that I was eligible to receive free psychological help from the Cancer Council if I needed it.

‘Six hour-long sessions, with more available if required.’

‘Why not?’ I said.

He brought up a referral form on his computer.

‘We just have to decide what to call your problem,’ he said.

‘Dying,’ I said.

‘Insufficient.’

He silently scanned the list of problems for which help was available.

‘Adjustment disorder.’

I laughed. ‘You’re making that up,’ I said.

He turned his computer screen so I could see for myself.

I sat with the psychologist in a windowless meeting room furnished with brightly coloured lounge chairs. A box of tissues was placed handily on a side table, along with a long glass of chilled water. The psychologist looked to be in her early thirties, pretty, neatly dressed. She took notes as I told her the history of my disease up to now. She asked a few questions about my home life, about my husband and children, about my daily routine. She asked if I was sleeping, eating, exercising, whether I had any fears.

‘Of course,’ I said. ‘I’m frightened of dying.’

‘That’s perfectly normal. How do you deal with your fears?’

‘I try to think about other things. I read, I watch television, I see friends.’

‘Have you ever heard of mindfulness?’

I had heard of mindfulness. A counsellor visited me in hospital after my brain surgery. She took me through a few of the basic exercises: how to breathe, how to listen to the sounds around me, how to observe my thoughts as they passed.

‘I use it sometimes,’ I said.

‘It’s good,’ she said, ‘to set aside time every day, to just enjoy the small things, the taste of an apple, the play of sunlight on the water, the smell of the rain.’

‘I know,’ I said, feeling a sudden urge to leave the room.

This was not what I’d come here to listen to. Surely this highly trained bright spark had something more up her professional sleeve than basic relaxation tips I could have picked up online any day of the week. I’ve read that the profession of psychologist is one of the forty or so predicted to disappear in the near future, along with bus driver and hotel receptionist. The research says that people are now more forthcoming about their problems when they’re communicating virtually rather than face to face. Or perhaps it is because people like me expect more of psychologists than they can possibly deliver, some superior wisdom about the mysteries of life and death. It was a good thing I wasn’t paying for my counselling, I thought, or I might have asked for my money back.

I ran out of things to say. Obviously I wasn’t a particularly challenging patient, my adjustment disorder being mild to non-existent.

‘Really I’m just sad,’ I said, trying to wrap up the session. ‘About all the things I’ve lost. I could have had another good ten years. But then, as Sartre says, everybody dies too early or too late.’

The psychologist nodded. I’m not sure she had heard of Sartre, or rated his opinion on anything. ‘Grief can accumulate,’ she said. ‘Little losses one after the other can mount up. Perhaps that’s something we can talk about next time.’ She closed her notebook to signal that my hour was up.

‘You can book your next appointment at reception.’

‘Thanks,’ I said, although I had no intention of coming back.

The psychologist was right about one thing. Losses do mount up. Sometimes, when I’m sitting on the front verandah being mindful, I’ll be distracted by the sight of a couple out on their evening walk. They’ll be heading for the river, which isn’t far from our house. There’s a park down there that runs along the riverbank for a good three or four kilometres. I would walk with my husband along that stretch of the river every morning and evening. It was how we bookended the day. The water is never the same, sometimes calm, sometimes rough, sometimes rushing out to sea, at other times racing in. We might stop to watch a mother duck guide her ducklings to shore, or a cormorant on a fishing expedition. As the evening sky darkens, the fruit bats come streaming across in the hundreds from their rookeries on the far bank to the giant figs on this side. We don’t do that walk anymore. I’m frightened I’ll fall and break something. Nor do I ride my bike along there, another pleasure gone. With envy, I watch the passing cyclists, gliding along the way I used to, pedalling hard when they come to the hill. I even envy drivers. I had to give up driving after my brain surgery, because of the risk that I might have another seizure. How I’d love to pack the car and head off to some deserted beach for a swim. But I weigh less than my neighbour’s retriever. I’d never make it beyond the first break. And so it goes, the endless list of pleasures I can no longer enjoy. Pointless to miss them of course, as that won’t bring them back, but so much sweetness is bound to leave a terrible void when it’s gone. I’m only grateful I tasted so much of it when I had the chance. I have had a blessed life in that way, full of countless delights. When you’re dying, even your unhappiest memories can induce a sort of fondness, as if delight is not confined to the good times, but is woven through your days like a skein of gold thread.

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You do reflect on your past when you’re dying. You look for patterns and turning points and wonder if any of it is significant. You have the urge to relate the story of your life for your children so that you can set the record straight, and so that they can form some idea of where they came from. In recognition of this need, my home-nursing service employs volunteers called biographers, who visit patients, record their stories, then put together a bound copy of the finished product to present to the families of the dying.

Susan Addison was my biographer. She came every Wednesday for more than three months to listen to my tales of triumph and failure, during which time we became more like friends than volunteer and patient. It was a happy coincidence that we were both interested in books and writing. Susan had a daughter who was a screenwriter in Sydney and knew some of the same people I’d known when I’d lived there and worked in the same job. Having a lot in common, we talked quite freely during our sessions together, and I came to learn almost as much about Susan’s history as she learned about mine. Very early on, for instance, she told me she had lost her only son to brain cancer when he was nineteen, a loss she had written about in her published memoir Mother Lode.

She lent me a copy and I read it with a mounting sense of humility and respect. For someone like me, who knew so little about death, it was chastening to read this beautiful, unsentimental chronicle of someone who knew so much about it. Soon after her son’s death, Susan had lost a number of other close family members in quick succession, and it had made her something of an expert in grief. But in spite of her losses she had refused to succumb to self-pity. She’d had help, she told me. After some searching around for spiritual solace, she had joined the Quakers and was a regular member at their meetings. It was the silence of the Quaker meetings she liked, she said, preferring it to services where there were sermons and singing. And she had the support of a loving husband, to whom she had been happily married for more than forty years.

Under the circumstances, Susan’s attentiveness to my ramblings about my own life was flattering. None of my past troubles could compete with the death of a child, not my parents’ messy divorce, or my own romantic flounderings, or my failures and setbacks as a writer. Mine was the privileged tale of someone who had not truly suffered. The fact that I was dying now was sad, but not tragic. I had lived a full life. Susan’s son had died on the brink of manhood. The two deaths didn’t bear comparison. This fact reminded me over and over again that my circumstances were less a cause for sorrow than an opportunity to feel thankful for my unearned good fortune. My two sons were still alive. I would not have to outlive them the way Susan had had to outlive her son. That alone was an immeasurable comfort to me. And I think Susan knew that. I think she understood that she wasn’t just my chronicler, but my guide, my travel adviser to that bitter country she had already traversed a number of times before me.

And then one Wednesday Susan didn’t turn up. I waited for her to call to say she was running late, but no call came. I heard nothing for a day, until Leanne from the nursing service rang me with the saddest possible news. Susan had suffered a massive stroke and was in hospital.

‘It’s not looking good,’ said Leanne. ‘I’m so sorry.’

‘I don’t believe you,’ I said. ‘I was the one who was supposed to die.’

‘I know. We’re all in shock. I’ll let you know as soon as I hear anything.’

A few days later Leanne rang me to say Susan had never recovered consciousness.

‘That’s ridiculous,’ I said. ‘She was sitting at my kitchen table a week ago laughing, telling stories.’

‘I’m sorry,’ said Leanne.

‘I’ve got two books of hers,’ I said, as if the thought of her precious books might bring Susan back from the dead. The books were coffee-stained, scribbled in. She would want them returned.

‘I’ll let her daughter know,’ said Leanne. ‘Maybe she could pick them up.’

‘Please do.’

Susan’s daughter rang and cried down the phone. ‘Shit, shit, shit, shit.’

I couldn’t find any words to comfort her. I just told her how much her mother had helped me over the past few months.

‘It was a privilege knowing her,’ I said.

‘Thank you.’

She picked up the books a couple of days before Christmas. So like her mother, tall, softly spoken, self-possessed.

‘It used to be the four of us,’ she said. ‘Now it’s down to Dad and me.’

I asked her how her father was.

‘Not great,’ she said. ‘It was all so sudden.’

Everyone said the same thing. It was so sudden, so unpredictable, a reminder to all of us that life is fragile. True, but it wasn’t how it was meant to be. Susan was supposed to bear witness to my passing, not the other way round. I was sorry we hadn’t recorded her life story instead of mine during our meetings. I was sorry she hadn’t had the same chance that I’ve had, to say a long goodbye to those she loved, or to prepare them for life without her, to the extent that that is possible. A sudden death cuts out all of the ghastly preliminaries, but I imagine it leaves behind a terrible regret for all the things left permanently unspoken. A slow death, like mine, has that one advantage. You have a lot of time to talk, to tell people how you feel, to try to make sense of the whole thing, of the life that is coming to a close, both for yourself and for those who remain.

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A few months back I was invited to take part in a program for ABC television called ‘You Can’t Ask That’. The premise of the show is that there are taboo subjects about which it is difficult to have an open and honest conversation, death being one of them. The producer of the program explained that I would be required to answer a number of questions on camera. She said questions had been sent in from all over the country, and the ten most common had been selected. I wasn’t to know what these were until the day I went into the studio for the filming.

‘They’re written on cards and placed face down on the table,’ she said. ‘You’re to pick up one card at a time, read out the question, then answer it.’

‘I’ll do my best,’ I said, more than willing to help. I’ve never been a confident public speaker. I’ve always been stymied by an uncomfortable suspicion that I was only posing as an expert. But in this case there could be no doubt. I knew about dying. In case my medical file wasn’t proof enough, you only had to look at my ravaged face. And I agreed with the premise. Death is a taboo subject, absurdly so. It is tidied away in hospitals, out of public view, the secret purview of health professionals who are generally unwilling to talk about what really goes on at the bedsides of the nation.

It turned out that the producer of the program herself had a need to talk about death, as she had recently lost her father to cancer, and was struggling to cope. This is so often the case with people I talk to about my situation: they listen for a while, then they tell me their own death story, but always with a vague sense that it is shameful, that the whole sorry business is somehow their fault. In taking part in ‘You Can’t Ask That’, I wanted to do my bit to change things around, to win back some dignity for the dying, because I don’t think silence serves the interests of any of us.

The questions, as it turned out, were unsurprising. Did I have a bucket list, had I considered suicide, had I become religious, was I scared, was there anything good about dying, did I have any regrets, did I believe in an afterlife, had I changed my priorities in life, was I unhappy or depressed, was I likely to take more risks given that I was dying anyway, what would I miss the most, how would I like to be remembered? These were the same questions I’d been asking myself ever since I was diagnosed with cancer back in 2005. And my answers haven’t changed since then. They are as follows.

No, I don’t have a bucket list. From the age of fifteen, my one true ambition in life was to become a writer. I started out by writing schoolgirl poetry, heavily influenced by Robert Lowell, whom we were reading in class at the time. I had a massive crush on Geoff Page, my English teacher, who used to recite Lowell to us in class in his laconic drawl. It made my heart swell to hear him and I entered into a kind of delirium that compelled me to sit up late at night scribbling my own Lowellesque creations, convinced that, in the ordering of words, I had found my true vocation. Later I moved from poetry to screenwriting, then to writing for children, and finally to writing fiction. I published two novels and a handful of short stories. It wasn’t a stellar career, although I did manage to collect a few outstanding mentors and friends along the way, as well as some loyal fans. So, in that sense, I count myself lucky. My real good fortune, however, was in discovering what I loved to do early in my life. It is my bliss, this thing called writing, and it has been since my schooldays. It isn’t just the practice that enthralls me, it’s everything else that goes with it, all the habits of mind.

Writing, even if most of the time you are only doing it in your head, shapes the world, and makes it bearable. As a schoolgirl, I thrilled at the power of poetry to exclude everything other than the poem itself, to let a few lines of verse make a whole world. Writing for film is no different. Emma Thompson once said that writing a screenplay was like trying to organise a mass of stray iron filings. You have to make the magnetic field so strong that it imposes its own order and holds the world of the screenplay in its tense, suspenseful grip. In fiction you can sometimes be looser and less tidy, but for much of the time you are choosing what to exclude from your fictional world in order to make it hold the line against chaos. And that is what I’m doing now, in this, my final book: I am making a shape for my death, so that I, and others, can see it clearly. And I am making dying bearable for myself.

I don’t know where I would be if I couldn’t do this strange work. It has saved my life many times over the years, and it continues to do so now. For while my body is careering towards catastrophe, my mind is elsewhere, concentrated on this other, vital task, which is to tell you something meaningful before I go. Because I’m never happier than when I’m writing, or thinking about writing, or watching the world as a writer, and it has been this way from the start.

If I had a secondary ambition growing up it was to travel. And I’ve done a lot of that, starting out with childhood expeditions led by my peripatetic father, then going it alone, then teaming up with a husband who is afflicted with the same wanderlust as I am. If anything, I’ve done too much moving around, to the point where I sometimes envy people who have stayed in the same place all their lives and put down deep roots. I blame my restlessness on Dad. He was an airline pilot who was happiest in mid-flight, neither here nor there. As soon as he hit the ground he felt trapped. His flightiness was the chief influence on my childhood. He moved constantly, from job to job, town to town, country to country. To me this seemed like a natural way to live. I revelled in the constant change, the excitement, the challenge of adapting to new situations. It made me resilient and agile. If there was a cost to it all, I wasn’t too concerned, at least not until my parents’ marriage fell apart under the strain.

As soon as I was able to, I started travelling on my own. I didn’t have much of a purpose in mind, merely to see what was out there. I can still remember the green canvas bag I bought for my first solo trip. Compact and sturdy, it was a nod to my father’s oft-repeated advice to travel light. I was headed for England, like so many others of my generation, drawn to a country we thought we knew from reading about it and seeing it on television. But travel, as well as being exhilarating, is also a process of disillusionment, of measuring your expectations against a very different reality. As I rode the train from Heathrow into London, I saw a landscape stripped of all enchantment, barely breathing under a dull sky, and felt my spirits dip. It was not exactly a disappointment, more a recognition that, in leaving home, I’d merely exchanged one enigma for another.