| The Age: 27-Mar-1999 |
| Larry Schwartz |
| SHE HAS chosen a white coffin. She’ll be wearing a long, white dress and a pair of Jiffies “so I can sneak upstairs real quick”. She wants to know if I’m nervous about talking to her. I tell her I am. People don’t speak much about death, I say. “Oh, I do,” she says. “I laugh and joke about it. I carry on and people say, ‘You’re crazy’. Look. I’ve been preparing for my own funeral. I say to people, ‘It’s just like a wedding. The only thing is you don’t send out invitations.”‘ Robyn McAuley is just 38 years old. A doctor told her last June she had cancer and about six months to live. “You know what I said? I said, ‘How do you know how long I’ve got to live? You can’t tell me. No one can. Not even Jesus Christ.'” She talks to God a lot. Anyone who says they don’t is a liar, she says. “I fight with Him all the time. I say, ‘You’re not getting me, you bastard. I’m not ready to come.’ There’s been a few times when I’ve gone in hospital and they didn’t think I was going to make it. I’ve made it. I’ve defied Him and I’ve defied the doctors.” It’s two years since she first visited a doctor with stomach pains and was told she had an ovarian cyst. “Anyway I ended up in hospital. I had bowel cancer. Well, they thought they got it all. So did I. Then June last year they did an X-ray of the liver and gave me six months.” She’s been in and out of hospital. Neither surgery nor radiation have helped. “I did ask about a liver transplant. But it couldn’t be done. I wouldn’t live through it. The cancer is in the middle of my liver. Had it been on the side, they could have tried to cut it off. It’s just in the wrong spot. “These things happen. I think, look, things could be worse. I could walk across a road and be hit by a bus. At least I’ve got a warning. I’ve got quality time. I’ve got time to plan things. Do you know what I mean? “No death can be happy or anything like that. Don’t get me wrong. But these things happen. It’s life. You just don’t think it’s going to happen to you.” Sooner or later, we all die. But we try not to think too much about it. In his early 1990s bestseller, The Tibetan Book of Living And Dying, Tibetan-born Sogyal Rinpoche recalled his surprise when he first came to the West that, for all the technological expertise, there was a lack of understanding of death of a kind to be found in his own culture. “I learnt that people today are taught to deny death,” he wrote, “and taught that it means nothing but annihilation and loss. That means that most of the world lives either in denial of death or in terror of it. Even talking about death is considered morbid, and many people believe that simply mentioning death is to risk wishing it upon ourselves.” But we all die anyway: there’s no getting away from it. We might choose between burial or cremation, in some cases even determine the time and manner of dying. We might postpone it. But we can’t avoid it. Death is the bottom line: the dark backdrop against which our lives are illuminated. We might not think too much about it when we’re busy with living. We might speculate on what awaits us, be comforted in belief. Or just pretend that it happens to others, as I caught myself doing for just a moment while talking to Robyn McAuley. We talk in hushed tones and choose euphemisms. We resort to black humor and bravado. We skirt the issue, talking to survivors of near-death experience, to carers, to relatives. But we don’t often talk to the dying. Each time I went out to meet with someone with terminal illness, I felt like some intruder, prying where you are not supposed to go. This story is based on just four encounters with people approached through palliative care services that ensured they were both willing and able to talk. Each welcomed the opportunity to discuss their predicament. Just four people. Four glimpses. Nine years ago, Gail Bateman, 40, was found to have bowel cancer with secondaries in the liver. She is in remission now and counsels with La Trobe University’s palliative care unit. She remembers her dismay at the time. “I just felt that I hadn’t lived all my life. I wanted to have children. There were other things in my life. I wanted to travel. I hadn’t yet had a sense of achievement in my career. There were so many other things I wanted to do.” Some come to terms with dying. Robyn McAuley says she’s resigned, if not quite ready to go. “I’m at peace. I’m not one bit stressed about it. But don’t think I haven’t had my times. When I have thought, ‘This is it, He’s going to take me, am I going to make it home this time?’ I have fought tooth and nail with Him upstairs and I have made it back home.” While undergoing chemotherapy, she’d watch others go. “I used to look around the room and I used to think every now and again there’s a face missing. You know what’s happened to that face. I’d see young kids go in there and I’d think, ‘Poor little darling. You haven’t experienced life.’ I’m lucky in that department. I’ve got a boy. I’ve experienced life. Believe me, my life could have been a lot better than it bloody was. But it wasn’t. But I don’t care.” THE Australian-born author Lisa Birnie writes that we can “help to create a good or bad death for ourselves”. “If we live our lives as if they have no ending, as if our supply of life is unlimited, if we believe the power, strength and beauty of our youth and middle age are set in stone and constitute who we really are and always will be, we are creating a bad death for ourselves…” She has written a book based on a 1997 stint as writer-in-residence at McCulloch House, a short-term palliative care unit at Monash Medical Centre in Clayton. Birnie, who was given an office and access where possible to people who were about to die, detailed her encounters and the varied response to the prospect of death in A Good Day To Die (Text Publishing, 1998). Among the many, she describes the way in which a man she calls Graham Davey – a 46-year-old businessman, owner of a winter condo at Noosa Heads, father of three – responds to news of his condition. He had been diagnosed six months earlier with stomach cancer. It had spread to the liver. “At that point Graham completely lost it,” Birnie writes. “Bewildered, incredulous, he shouted that he couldn’t stop for surgery. `I’m it,’ he cried. `I’m the boss, the owner, the head honcho. There’s nobody to take my place. I’m in the middle of a big deal. You told me it was indigestion. Now you say it’s bloody cancer.”‘ For some of us, it’s not the death but the dying that causes concern. “It’s not that I’m afraid to die,” Woody Allen once said, famously. “I just don’t want to be there when it happens.” But so many of us die by inches. Perhaps it’s inevitable that the few I spoke to suffered from cancer. It’s by far the most common cause of death, with life commonly prolonged by medication. “I hope that I don’t have too much pain,” confides retired motor industry executive Han Schmitz, 72. “That it is bearable. That I can be myself. The only thing that I am very scared of is that I will be immobile and pain takes over. I have had some of that over a period and that is a very difficult situation.” We assume that death is a taboo. But the few I approached wanted to talk and did so with little inhibition. Inevitably talk would turn to the possibility of life after death. “Oh, there is no hereafter, as far as I’m concerned,” Schmitz says. “I always respect people who get strength from (religion) … But I can’t see it. To me, there is an end and that’s it. There may be something which creates continuation. But I can’t see a heaven and an earth. A life hereafter.” At times, there seemed to be a detachment, as though the dying was a process that might be observed dispassionately. A specialist at the Royal Women’s Hospital sketched the spread of the cancer for Joan Whiteoak, 84. She shows you the drawing. “That’s where he explained the cancer had gone. Down from the top right down. Right down to the front and then through the front. They hoped radium therapy would hold it. But of course, in time, it got through to the bone.” She tells you: “I think that as soon as you die your spirit leaves you and goes. Where it goes to, well, I wouldn’t know. But I think your spirit goes and I do think that it comes back some time as something else. Maybe another person or something else. That’s my belief. Your body is only a shell.” Even so, she’d rather not have that shell buried in the earth. “I couldn’t bear the thought of being under the ground,” she says, laughing as she does. “I’m frightened of spiders at ordinary times. So, no. It has to be cremation.” Robyn McAuley has berated God for wanting to snatch her away from life. “I was angry with God. No one else. I was like, `You prick. Don’t think you’re going to take me from my kid.”‘ She lights up another cigarette. Had it been lung cancer, she might have conceded the smoking had contributed. “When I first came home from hospital and I knew I was dying, I was smoking 75 cigarettes a day and enjoying every one of them. I still smoke my guts out.” She’ll savor each last moment with her 19-year-old son, Anthony. “The love for my boy keeps me going,” she says, “keeps me strong. I’m determined not to leave that boy for as long as I can.” There are figurines of babies alongside a merry-go-round on display in her sparsely furnished unit in a northern suburb where houses, shops and offices are dwarfed by a Housing Commission high-rise. “They’re gorgeous, aren’t they,” she says. She’s been setting aside mementos for her son in an ornate, carved chest. “Special things for my boy,” she says. “For when he’s older and I’m not here.” There are photos of her. A handmade doll he might give to a daughter one day. A toy clown a friend had given her. “Just little special things, you know. Just stuff.” She’s going to make a video for him. “Hey, son. This is mum. I’m here for you. I will always be. I might not be here in sight. But I am here.” She’s been sending away to Queensland for ground shark cartilage. Someone told her it might cure her. She opens a plastic container and gives me a whiff. I feel like I’m being offered a bowl of ashes with a powerful, marine stench. The cancer was six-by-five centimetres when they found it. By last December it was nine-by-seven. “So that’s a whopper,” she says. “And it slowly just grows. To be quite honest, when I first found out about this I said, `Just cremate me. Just stick me under the lemon tree. Just don’t let the dog dig me up’ …” She’s since decided she wants to be buried. “I’m going on the lawns,” she says. “I’m not going to have a headstone. I can’t afford it. But I do want a little plaque with me and my boy on it. “I’m going to Fawkner. So I can get the tram to Brunswick on a Saturday night.” She laughs. She was raised a Catholic and believes there’s a God watching over her. “It’s funny. A lot of people say, `Is there really God? Is there really this? Is there really that?’ I believe there’s got to be someone up there and I think to myself there’s been plenty of times when He could have taken me. I wonder if it’s because I abuse Him so much.” And what might God say about Robyn McAuley? “She has given me a headache. I’ll let her stay down there for a while.” Han Schmitz learnt six years ago that he had carcinoma of the colon. He underwent surgery and says that for a year, it seemed the cancer was under control. The symptoms re-emerged about two years ago. He went back to hospital for bowel surgery. This time, he learnt it could not be cured. Unlike McAuley, he was given no indication how long he might live. “None at all,” he says. “They made it very clear that they couldn’t give me an indication. Everybody wants to know. It is the first question one asks. You see, you have so many things to do. The moment you are told it is coming to an end, you realise, Oh I have to do this. I have to do that. The time to do my tax. It never has been a problem. Last year, it was a major issue. I was really concerned that I wouldn’t get it ready in time.” Fiercely independent, he regrets he can’t drive much any more and struggles with tasks he once took for granted. He has been a keen handyman. His wife, Anne, nicknamed him Mr Fixit. He’s relieved that a charity organisation has helped him find a home for the vast collection of tools he assembled over the years now that he’s come up against a situation beyond repair. “The thing is that somewhere deep down, you don’t accept the deterioration,” he says, “because I have had some very good times. “Actually, I had a very bad year last year. Just before Christmas, my son and family came from Perth and I had no pain and, for the first time in more than a year, felt on top of the world. That lasted 10 days and, you know, like this you have got a bit of hope that maybe there is some improvement.” Hope of remission? “No. Not that. But maybe I’ll have some longer time. It is more bearable. Let’s put it that way.” He was born in the Hague, Holland. The Dutch underground helped him flee to England, via Belgium and France, during World War II. After the war, he worked for the Rootes Motor Company, manufacturer of the Hillman, Sunbeam and Humber. He has spent years in Japan and China. He once headed Asia Pacific operations for the Chrysler Corporation. “All through my life I have been in difficult situations,” he says, “and I have always landed on my feet. Things always worked out.” He enjoyed his work, has been happily married for 37 years, is proud of the achievements of his son, who lives in Perth, and confident in the prospects of two grandsons, both at university. Retirement was a hurdle. He preferred to be busy. He and his wife have a small white lapdog, a bichon frise he says came with the name Shnootsy. Buying that dog was the best thing he could have done, he says. He’d walk it up to Kew Junction and back when possible. Shnootsy yaps when you come and go. “Don’t worry,” he’ll console the dog. “We’ll see him again.” He’s grateful to the service coordinated through Caritas Christi at St Vincent’s Hospital that takes calls at any hour of night. He wonders how he’d manage without the help of nurses who visit most days. He’s determined to die at home. Medication has made life more tolerable than it might have been. The morphine at one stage caused hallucinations. “Until very recently I had all sorts of illusions and dreams. I was completely in another world for a while. “I would stand up and talk to my wife and say, `Oh, the nurses are there. They’re in the laundry. Why should they be in the laundry?’ But I’d get up. That went on for hours. “There was dreaming. I was constantly working. I reorganised our company maybe a dozen times. I spent most of my working life in Asia. And all those people from those days, who I couldn’t remember, all came back during those dreams. Luckily late last year in November they found the level and since then, there’s been a “Ah yes, I feel quite happy. I like to face up to things because I always have had to.” reasonable amount of control.” He wants to be cremated. “I find it the only way to go,” he says. “So we put it in the will. There is the other question. I don’t want to spend large amounts of money on a funeral. I think it’s an absolute waste.” He says his wife agrees with him. “But there could always be people who say, `That is a cheap thing.’ I have put it down how I want it. So whatever people say afterwards, that’s it.” JOAN WHITEOAK has a charcoal sketch of her late husband on the wall of her unit in Preston. Henry Hamilton Whiteoak, who sported a broad beard at the time, died of emphysema 23 years ago. He was in the navy in Greece when a youngster drew his portrait. “He was only 64 when he died. He was only young , really. There I am 84 and still going. More or less.” She was 16 when they met, he three years older. “I ran for the train at Princes Bridge and I fell into the railway carriage just as it was starting. It was one of those dog boxes. He helped me up and he shut the door and we got talking, of course. He took me to the pictures that night. We went to a show. We went out for about six months. Well, we had a bit of an argument and I didn’t see him again for 10 years.” They were destined to be together. “Ah yes. It had to be. Because he roamed the world and never met anybody that he wanted to marry.” Was there a possibility of being reunited in the afterlife? “Well, I think you could, although it would be a different relationship. Who knows? You might go and meet up with your wife later on when you both pass away. But you wouldn’t know that you’d met before. You might meet as brother and sister or something like that. You might even meet up as husband and wife again.” She had grieved for him. “Ah, that was hard to cope with because they just told me over the phone, really, that he died. That was really traumatic. It took a long time to get over that.” They had no children. She has a baby doll in a toy pram in one corner and two teddy bears for company. The elder of her two sisters has died. But she isn’t lonely. Her nieces and nephews have made sure of that. A niece does her shopping, changes her bed linen, takes it home and returns it after it has been washed. Nurses and a doctor have visited each week in the 18 months since her cancer was first diagnosed. (“Will I say where it is? It’s in the vagina, the bladder and part of it’s gone into the bowel. I have had radium therapy and now I’m on morphine and tablets and liquids.”) Darebin Council sends a young woman to do the housework. She cooks for herself. She sits at a table and does crosswords. She’s lost so much weight in recent months, her spectacles fall off. She shows you her photo albums and you tell her she was once so beautiful. Then you correct yourself. She still has a sparkle. You realise how you glibly associate beauty with youth. She’d been so stunned when a doctor told her she had cancer, she though she might have misunderstood. “I am a bit deaf,” she explains. “I lay there in the bed and I mulled it all over.” The doctor came to tell her again. “I didn’t think you understood what I was talking about,” the doctor said. She’s been using a stick since a hip replacement 12 months ago. “The cancer got its way into the bone there. I thought it was arthritis or something.” She says she’s at peace with what’s happening. She sleeps well at night and rarely dreams. Must have a clear conscience, she says, laughing. She’s lived a good life and is not afraid to die. “Ah yes, I feel quite happy. I like to face up to things because I always have had to. I’m a happy person. I try to cheer up all the time and cheer other people up. My local doctor says that I’m his miracle patient because I keep coming back.” The doctors haven’t indicated how long she might endure. “But sometimes you think it would be better if they did tell you that. Then you would know whether you should fix everything up or whether you should leave it a little bit longer.” She laughs. “I don’t know. But that’s what I think.” GAIL BATEMAN has received a reprieve of sorts. Though she was found to have cancer of the bowel with secondaries in the liver, she is in remission. You’d assume hers would be the happiest of stories here. But when her tears well up towards the end of almost two hours at an outdoor city cafe, I want to step right back. Bateman insists these matters are not canvassed nearly enough. She remembers the day the telephone rang at home and her gastroenterologist confirmed her worst fears. “Suddenly, you feel distant from the world around you … It’s almost like the world is spinning around you. It’s a sense of distorted time or something. I suppose it’s a sense of extreme panic that there’s nowhere to run to or to hide or anything.” As a child, she’d lived on farms in the arid Karoo region of South Africa and outside Auckland, in New Zealand. “My father used to kill sheep for us to eat and I used to always want to save that sheep’s life and tell it to jump out of the pen and run away. I didn’t want those animals to die, I guess, because I didn’t know what death was or where they went.” Bateman was 10 when she received a letter from the parents of a girl her age with whom she had corresponded for several years. They wanted her to know their daughter had died of leukaemia. `ALTHOUGH it’s very sad and I had a cry, I really appreciated that they had written that letter to me personally,” she says. Her parents were not impressed. “They thought you don’t talk about death. You keep those things away from children.” She was working as a psychiatric nurse when she first experienced discomfort in the bowel area. She was 26 at the time. But though she sought medical treatment, her condition wasn’t diagnosed for another five years. By this stage, she had fallen pregnant, then miscarried a twin at 20 weeks. Doctors had failed to diagnose the cancer even though she lost weight throughout the pregnancy. “I did feel a sense of being cheated… by the medical profession,” says Bateman, whose marriage would break down in the years of uncertainty that followed her diagnosis. “I felt I’d tried to get help for a number of years and that nobody would take me seriously. And I thought, `I’m not going to die because of your incompetence’.” The cancer was removed surgically. She saw a need to change her lifestyle. She favored a macrobiotic diet, listened to meditation tapes, was buoyed on one occasion by the sense of a light that permeated all things. “I felt this notion of what God is,” she says. “It’s not out there. It’s within you…” Bateman remembered an early passion for horses. The hours spent sketching horses to make boarding school more bearable. Holidays with the long-legged mare she called Gazelle. She took riding lessons again and keeps a horse called Xena (formerly known as Babe) on a property near the Dandenong Ranges. “You’re only here for a short period of time,” she says. “I should be doing things that I really enjoy.” ROBYN McAULEY once took it for granted she’d see her son reach adulthood. She wanted to be there to make billycarts in the back yard with grandsons or mud pies with granddaughters. “You try to hang on to whatever bit of life you’ve got,” she says. “I try to hang on to whatever fight I’ve got left in me for my boy. I just don’t want to leave him. I am determined I won’t leave him until my body is ratshit and I’ve got no say in the matter. “I used to say, `Gee I wish I could win Tattslotto’. Stuff Tattslotto. All I want is another 10 years with my son. I’d be the richest woman in the world if God would come down and say, `Listen Robyn, we’re not going to take you for 10 years. Here’s a contract. We’ve signed it.’ I’d be the richest woman in the world. I really would.” But she’s too tough, too courageous to lull herself with that fantasy. “You don’t know what’s at the end of the rainbow,” she says. “Whether it’s a pot of gold or a big black hole. No one can tell you till you go. “I just say to God, `Just give me peace of mind when I’m gone’. He’s giving me too many headaches while I’m here. Something’s got to be better than this. But I’ve also made a deal with Him. `I don’t care if I have a life in hell after I leave. Just let me be able to watch over my boy.’ “No one knows if there’s a good life after this. No one knows if there is a life.” Nursing the dying ‘PALLIATIVE-CARE workers not only take care of people but care for people. Sitting at the long polished table in the quiet McCulloch House lounge, with the weak wintry sun now fading and the evening visitors yet to arrive, I talk with 31-year-old John. He is a sturdy energetic man, a gentle nurse, spontaneous in speech, and given to a slightly offbeat humor that irritates a couple of his co-workers but which makes him highly popular with patients, to whom he is devoted. “I went to St Vincent’s Hospital for 12 months and decided I couldn’t stand acute nursing. We were so busy I hardly touched a patient the whole time I was there. I remember sitting down talking to a patient one day and one of the nurses told me off. I needed to make a difference in someone’s life, to be acknowledged as having something more than a tablet to offer. The director of nursing suggested I have a look at Caritas Christi, a hospital for the terminally ill. I stayed a year and found it fascinating and then came here to McCulloch House. “My big discovery was that death is nothing to be frightened of. You can just be talking to someone and they die. Or someone will ask, `Why can’t I die?’ And you can just sit with them and let them talk, and you might make a joke about it assuring them that they will, and both of you end up laughing. There’s nothing like laughter … “Since I’ve been here, I make the most of my time off. I tend not to put things off. If you want to go on a holiday, go. Do it. If you want something and can afford to buy it, buy it. If you love someone, tell them. You’re dead a long time.” An edited interview from A Good Day To Die by Lisa Birnie, Text Publishing. |
Larry Schwartz Writer 