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Kate says her need was simple: ‘Belief would have given me someone to ask for help.’ Instead, she turned to friends and family, people to whom she could voice her fears. ‘I quickly came to understand that breast cancer is not the killer it used to be,’ she says. ‘I would tell myself: “You can survive this. You’ll be all right.”’ She smiles with some of her old confidence. ‘So I suppose that became my belief.’ Joking, she refers to another friend who has been living with cancer for a while. ‘She says: “I can live with the sword of Damocles hanging over me, but I don’t want to have to polish the fucking thing.” I think that sums up my attitude perfectly. You do get ever so slightly tired of being told to get on with your life.’
Questions about the future, near or far, remain part of the battle with ill-health. Kate is having to make that adjustment, but her natural optimism will help. From my experience, after twenty years, I still feel excitement at the thrill of the unknown, at least until those pesky ‘What ifs?’ show up. But those creatures do not have to be malign. Maybe they will show the way to new worlds and possibilities? Survive a brain attack and you acquire a special kind of resilience. I like to think I am equal to whatever the future holds, prepared for what fate holds in store. In the predicament of grappling with the ‘What ifs?’, all one can do is keep a sharp eye out for opportunity, and sail forward under the flag of ‘No surrender’.
Kate, who describes herself as ‘a naturally positive person’, has also found consolation in literature and the arts. Later in her convalescence, she described going to the Edinburgh Festival, and happily sitting through five new plays a day: ‘If I’m reading a good book, or watching a play, or listening to a beautiful piece of music, I’m transported elsewhere, and can forget about my cancer. I’ve become an addict of very good podcasts, and I’ve joined Audible.com.’ She adds, merrily, and with some astonishment, that she’s been ‘listening to a lot of Trollope’. Barchester aside, Kate has some advice for fellow sufferers. ‘I’d suggest doing things that give you pleasure rather than trawling cancer-survivor websites. I went onto one of those websites last night, and ended up wanting to throw my laptop away, and return to my novel.’
In the absence of faith, I asked her, ‘What might dying mean?’ Kate’s answer, which speaks to her determination to live in the present moment, came as a surprise. ‘My greatest fear,’ she replies, ‘was about those I would be leaving behind.’ Kate describes how her husband had already lost a child from his previous marriage. ‘I know what grief looks like,’ she says sadly. ‘My main thought was: I can’t do this to my husband and my son. I just can’t die on them. What would they do?’ Her concerns seemed to be less about her mortality, and more about the vitality of her marriage and her family.
‘I’m a mother and a lover,’ she continues. ‘I have a very good marriage. I worried about the sexual relationship I would have with my husband if I lost my breast. All of these things went through my mind, including: would I be less attractive? It all sounds very superficial next to Death, but it really isn’t – it was all about my identity as a woman.’
At this point in our conversation, Kate became almost indignant. ‘Am I dying as a woman? I might get to live, but will I be only half a woman? Half of myself?’ And of course, she could not prevent the apprehension of Death from shining a bright, unbearable light on her past life. Everyone carries inside them the memories of youth. ‘I smoked, I drank, and I partied,’ says Kate. ‘I’ve always lived life to the full.’ It’s another irony of this story that those who make the most of their lives sometimes seem to pay a higher price. In extremis, the carefree past can become a terrible reproach.
Kate’s surgeon had counselled her not to dwell too much on the ‘why?’ of her illness. Still, she freely confesses that her cancer had been ‘a wake-up call’. She insists now that once her chemotherapy is complete, she will respond to this emergency. With another cheerful, ironical laugh, she adds that she now has a new aspiration – the ‘ambition to change’ her way of life.
Kate’s chemotherapy treatment has been a huge strain, on her and on her family. To mitigate the side-effects, she consumes a supermarket bag full of drugs: ‘anti-aching pills, anti-rash pills, anti-vomiting pills, sleeping pills . . .’ Finally, however, she seems to be coming through. With the sessions drawing to a close, but much weakened, she tires easily, lacks the energy for exercise, and cannot rest at night. ‘My body feels really tired, but I still can’t sleep. That’s awful. My mind is racing, and I’ve not slept through the night since I was diagnosed. At first it was stress, now it’s the side-effects of the drugs.’
Still, Kate has begun to approach a new serenity, as if purged by the experience of coming face to face with her mortality: ‘I’m not that frightened any more. I feel secure in the advances that have been made in breast-cancer treatment in the last ten years. Only a few years ago, I would have had a full mastectomy. Things have changed. Chemotherapy has become less punishing. When my chemo is complete, I will have a 95 per cent chance of being well in five years’ time. I’d say that’s pretty good.’
We both digest this statistic in silence. Then Kate says, ‘I have these moments when I ask myself, “What if the NHS hadn’t called me back? What if I’d walked away from that mammogram?” It feels like a close shave.’ A small, but grateful smile of victory. ‘I feel like I got away with it.’
11
THE PERSON WHO WAS ILL
‘I have wrestled with death. It is the most unexciting contest you can imagine. It takes place in an impalpable greyness, with nothing underfoot, with nothing around, without spectators, without clamour, without glory, without the great desire of victory, without the great fear of defeat, in a sickly atmosphere of tepid scepticism, without much belief in your own right, and still less in that of your adversary.’
Joseph Conrad, Heart of Darkness
Kate’s courage is all the more impressive for being expressed in the shadow of extinction. She has had to face up to, and be terrified by, the prospect of dying. And yet, for some baby-boomers, such a rendezvous with reality is unthinkable. For them, the self is king and the body sovereign, while they must be immortal. On the spectrum of reactions to the human predicament, this might seem an extreme response, but it does demonstrate an unquenchable will to live, the quality that makes us human.
Carol is fifty-one, a successful policy consultant, married with two grown-up children whose childhood was shaped by their mother’s serious illness. This is Carol’s story, and it’s one I’ve been vaguely conscious of, as her friend, for several years. She has never spoken about her chronic afflictions before, and her words flow in eloquent sentences, as if too long pent up. This is less of a conversation, and more of a monologue, into which I feel lucky occasionally to insert an observation, or perhaps even an enquiry. Carol, no question, likes to command her own narrative.
‘My first bout of ill health,’ she says, ‘began about twenty years ago, with an episode of food poisoning that never seemed to stop. I ignored it for a long time: I was brought up in a household where you didn’t make a fuss about things. Besides, I’d always been phenomenally – even rudely – healthy. My family had lived in Kenya and Botswana, where everyone got sick all the time. That was just part of everyday life, and you learned to get on with it.’ Carol was firmly committed to the idea that she had an iron constitution, but on this occasion her body let her down. She remembers saying to her husband, ‘I feel so ill I’m going to have difficulty walking up the stairs,’ but then thinking, ‘What utter nonsense. Stop exaggerating.’
In her kitchen, where we are sitting, Carol pauses to serve mint tea, then picks up where she left off. ‘Eventually, I went to work but was physically too weak to move.’ When, finally, she capitulated and went to see a consultant, he advised her that she was on the verge of ‘a total collapse’, suffering from colitis, a vicious auto-immune digestive disease. It would be five months before she was well enough to get out of bed and return to work. Looking back, she says
, quite matter-of-fact, that, ‘This disease has blighted my whole life. My son asked me the other day, “Why didn’t you take us to museums at the weekend?” I replied that this had been the plan for his childhood, but I got ill when he was four.’
The whole experience left her baffled and amazed. She had always thought she was a fundamentally healthy person who was inexplicably unwell, and that her body would recover. ‘I had been brought up with a mind-set that says, “Willpower can do anything,”’ she remarks. ‘My mother is very impatient of illness, from a stiff-upper-lip, get-on-with-it school of ill-health. I remember her telling me that “Max Weber says illness is social deviance – and I agree with Max Weber.”’
Carol certainly felt she was a social deviant, as far as her own chronic condition was concerned, and decided ‘the less said about it the better’. When she was unwell, she would stay at home and sleep. ‘I didn’t want people to think of me as feeble. I thought, “This is hideously embarrassing.” I don’t want to think about it, and it’s bound to stop soon.’
But it didn’t. Soon, she was back with the consultant, who told her she was getting so weak that, as he put it, ‘You will die.’ The upshot of this stark warning was that Carol took early retirement for medical reasons, which came as ‘a deep relief’, and yet it never occurred to her that she was fatally ill. Indeed, when advised that she risked dying, her first thought was, ‘“How interesting.” I was delighted by how dramatic I’d become. Plus, I simply did not believe my consultant.’
The decision to stop work was much more threatening to her than any fear of dying. She confesses she was scared of losing her identity. The months in which she was too ill to go to her desk were, she says, ‘terrifying’. Carol is a highly intelligent, thoughtful and decisive woman, and this account of herself comes as a shock. I wondered if, in extremis, she had ever thought about discussing her illness with friends.
‘No, I never wanted to talk about it, or draw anyone’s attention to the fact that I was unwell. I just didn’t want to be “The Person Who Was Ill”. Actually, my children were worried more than me. My daughter was about six when she asked me if I was going to die.’ To which Carol replied, briskly: ‘Of course not.’ Her coping mechanisms are as iron-clad as Kate’s sense of humour, but I find it hard to believe that she never had moments of introspection, and now challenged her obdurate denial.
Carol, however, will not be shaken. ‘No, my reaction was always: “What is this thing that is being imposed upon me? Could someone please take it away? How unreasonable it is that I should have to suffer this inconvenience.” No, it caused me no introspection whatever for many years. None.’ She flashes an ironic but steely smile, like a scalpel. ‘Just fury.’
Carol is the kind of woman you want in a crisis: sometimes, she can seem quite astonishingly calm and collected. But now she was on the brink of losing her cool. She goes on: ‘I was infuriated and bewildered. I felt guilty and ashamed for not functioning better. I did think, at some level, that I must have done this to myself, and that there was something I was doing that was wrong. At the same time, I felt like Thomas the Tank Engine. I just had to keep going.’
I manage to insert a question in the conversation: ‘Did you ever explore any kind of therapy?’
‘No.’ A beat. At one point, she added, her consultant had asked her to see a psychiatrist ‘just in case I was depressed’, and to discover if depression was a source of the illness. To this, Carol’s sarcastic response was, ‘Yes, I am sometimes depressed – but that’s because of my illness, not vice versa.’
Eventually, she did go and see a psychoanalyst. This, she adds, almost merrily, was ‘the single worst experience of my whole life. I felt as if I had been assaulted, and then discarded.’ As we review this phase of her profound ill-health, our conversation seems to have reached a natural pause, and then she says, quite bluntly. ‘Six years ago, I was diagnosed with breast cancer.’
*
Carol’s experience of this diagnosis repeated the experience of her first illness: she was wholly unprepared. ‘I’d had my children early, had breast-fed them and so on. I always ate well, with plenty of fruit and vegetables. I didn’t smoke or drink much. I went running. I’m not the kind of person who gets cancer, I thought. I was so sure of my fitness that when I went for a second appointment, I didn’t even take my husband.’
As it turned out, Carol’s cancer was fast-growing and aggressive. But now a new crisis presented itself. She had to have an immediate operation and, at the same time, come off all her colitis drugs. She’d been on immune-suppressants for more than five years. Her cancer doctor wanted to stop this treatment. All at once her body became a battleground between her cancer specialist and the doctors who were treating her chronic digestive problems. In the end, to tackle the cancer, she underwent two operations, followed by eight sessions of chemotherapy.
Carol’s cancer treatment, she reports with characteristic stoicism, was ‘pretty grim’. For the first time in all her years of ill-health, Carol says she was frightened on two levels. ‘First, there was this horrible sense of being caught between two medical protocols, the oncologists and the digestive specialists. Secondly, I was very, very surprised’ – this must be the mother of understatements – ‘by chemotherapy. It was like nothing I’d ever experienced. I’d once had a bad attack of malaria which had been so unendurable I would have been thrilled to be dead. Chemo was far worse than that. When you are ill, you can feel your body fighting something. That’s what the fever is about, the battle to get better. With chemo, you can feel you are being poisoned, and that every cell in your body is wavering on the edge of death. My head ached. Everything – even water – tasted disgusting. I was too feeble to move. After each session, I would be curled up at home, scarcely alive, waiting for the next stage.’
The real terror of chemo was the thought that she was going mad with ‘chemo brain’. She’d open the morning newspaper, and would not be able to follow the news. ‘That was the most terrifying thing that’s ever happened to me,’ she confesses. ‘All my life, I’ve been able to read and digest words very quickly. Now I could not follow A plus B plus C; i.e. if this, then that. I could read novels, but I simply could not follow an argument.’
Some patients develop detachment. This was not Carol’s response. She has, she admits, ‘a rather narrow sense of personal value’. Instead, she asserted herself, went to see her consultant, and told him, ‘I’m stopping this, I’d rather die.’ Commendably, her consultant advised her that she could not do this to her family, that her brain would recover, and that there was this nasty option (chemotherapy) – or death.
‘Now,’ says Carol, ‘I was in a state of private panic. I didn’t tell anyone, apart from the doctors and my husband.’
When she was first diagnosed, Carol found her personal crisis strangely exhilarating. ‘I was fed up with the routine of my life. At least this was interesting.’ Now, in the depths of chemo, she says she discovered a new source of solace: the extraordinary kindness of friends and strangers, and a tidal wave of love and affection. ‘When people know that you are close to the edge, they will come and tell you extraordinary things. I think people feel very emotional and engaged around the seriously unwell.’
I interject to remind her of Keats’ remark that ‘We are all ill’.
‘Yes,’ replies Carol. ‘Illness strips everything away. There are suddenly no barriers. In that situation, people want to say something real, to come up with a matching reality. And the most “real” things they can say are the secret things that they don’t normally talk about. They believe – rightly – that you will honour their predicament.’
For Carol, everything in the world became quite extraordinarily vivid. ‘I still didn’t think I was going to die, but the experience did wake me up. Everything seemed so worthy of attention. It changed, and deepened my relationship with everyone around me.’ She is not starry-eyed about this, as one might expect. ‘I think everyone has some sympathy with a limited
crisis. Almost everyone behaved well. There were some funny moments. I remember one colleague, with whom I’d had a slightly combative relationship, gave me a book as a present: The Importance of the Breast in Western Culture.’
*
When she looks back on nearly twenty years of chronic ill-health, Carol has a few regrets: ‘Being unwell teaches you to value things. I’ve had moments of great joy. I feel fortunate.’
Carol’s passionate optimism encompasses her general attitude to matters of life and death. Speaking of her breast cancer, which is now well behind her, she believes that the treatment – a horrendous experience – was good for her. It made her more appreciative of everything, of being alive. It also released her from what she calls ‘the unconscious voices of puritan guilt’. We both agree that driving yourself towards any intangible goal is at once a path to disaster, and also pointless. You have to recognize the value of what you’ve got. ‘Thanks to the cancer,’ she concludes, ‘I’ve found so many more moments of joy and contentment.’
Carol also believes that acute and persistent ill-health has renewed her focus on the things that matter. ‘I’ve grown intolerant,’ she continues, ‘of things that waste time. I’ve learned to interrogate my choices as a way of enjoying things more.’
As we reviewed her strange story, I wondered if she had ever felt the victim of a malign fate.
‘God, no. When I was growing up in the Third World, I saw countless lives ripped apart by war, disease, famine, and poverty. For most people, life is awful, random, and savage. Me? I’m living one of the luckiest lives imaginable.’
Finally, I decide I must ask the woman who does not believe in death if she ever thinks about what dying might be like. Her answer is strangely predictable. ‘I never do, no,’ she replies. ‘I just don’t think about it at all.’ But then she confesses to a deep fear of dementia, and a loss of cognitive competence, and reports that she has given her children power of attorney for her old age. Robust and unsentimental as ever, Carol says, ‘Looking hopeless and vacant for twenty years in a nursing home is just not worth it.’