Living under the shadow of cancer
Ever since his best friend died from cancer, Rex Innis of Hikutaia has let the Cancer Society pick daffodils from his plot to sell for its annual appeal each spring. Sooner or later, cancer invades most of our lives-unbidden, unwelcome and heavy with menace, the body in mutiny against itself, Regardless of whether the disease strikes us or someone we love, life will never be the same.
Soon after my grandparents moved to Tauranga at the end of the 1950s, my grandfather developed a lump just in front of his right ear. He was never one for running to doctors, and when, after a year or two, he was persuaded to have it examined, the lump was large. It was diagnosed as cancer, and he was soon travelling to Hamilton, Auckland and Palmerston North for high-voltage radiation treatment.
Then he had surgery—or maybe the surgery came first—and a major nerve which controlled that side of his face was severed. His face became permanently twisted. I could no longer understand what he said, and he could no longer chew or swallow properly. All his food had to be puréed. He dribbled a lot, and sometimes food spilled from his mouth. It was cruel and humiliating for the gentle old man. I felt deeply for him, but awkward, too. When we visited, I tended to avoid him. Gradually he deteriorated, but it was years before he finally died.
I was 10 or 11 when he was diagnosed, and the whole sad episode left me pretty nervous of cancer. Many of us have had a similarly unpleasant experience. I suspect that it is the disease we dread the most, the diagnosis we least want to hear. Most of us hope for a sudden death, preferably while sleeping. Cancer represents the antithesis of this “easy” exit. Too often, as with my grandfather, it produces a slow withering of dignity, a descent into pain and emaciation. Death comes as a welcome deliverance.
Once we have had personal contact with the misery of cancer, its shadowy spectre is never far away. Who hasn’t secretly worried about the appearance of an unusual mole, or wondered whether a persistent back pain isn’t caused by a slowly inflating tumour?
Such worries are not without foundation. In the past few years cancer has overtaken heart disease as New Zealand’s leading cause of death, and according to Brian Cox, an epidemiologist at Otago University, by 2005 the incidence of cancer will be 40 per cent higher than it was in 1990, and 27 per cent more people will be dying from the disease. At present, cancer claims the lives of 7000 New Zealanders each year, and 12,500 people develop the disease.
Of course, cancer is not really a single disease. It is a complex of several hundred diseases that all share one accursed characteristic: they start with a single cell dividing uncontrollably, and passing on this trait to its progeny. And although we distinguish skin cancer from pancreatic cancer from prostate cancer, most organs contain several different cell types, and any of them can become cancerous. Which type of cell a cancer arises in may considerably affect a person’s prognosis. For example, melanoma—cancer of a pigment cell in the skin—is potentially a much more serious condition than basal cell carcinoma, a common and usually treatable skin cancer.
Detailed cancer statistics—New Zealand’s cancer registry is the third longest running in the world—show that some organs and tissues are much more cancer-prone than others. A thousand New Zealand men will get lung cancer this year, but only 130 will contract brain cancer. Sixteen hundred women will be diagnosed with breast cancer, but only 70 with oesophageal cancer.
I have to confess that I find cancer statistics endlessly fascinating. On first appearance, they seem to have so much to tell us about the disease(s), yet the conclusions always hover just beyond our grasp. Why should women have only half the incidence of rectal cancer as men, and why only a fraction as much laryngeal cancer? Indeed, why should the incidence of almost every sort of cancer be lower in women? (Breast cancer is an exception—only a dozen men get that each year.)
Once you get into international comparisons, the stats are even more tantalising. There are often huge differences in the incidence of the same cancer from country to country. By and large, the reasons for these differences are thought to be cultural: when people emigrate, within a generation or two they usually take up the cancer characteristics of their new country. For instance, stomach cancer is a major problem in Japan, but Japanese Americans get stomach cancer at the US rate (about a sixth of the Japanese rate). What factors cause stomach cancer in Japan which are not present in the USA?
New Zealanders have a moderate rate of stomach cancer (higher than the US, but a quarter that of Japan) but a very high rate of colon cancer. Are we eating something that doesn’t affect the stomach much, but is bad for the intestine?
Gender differences just increase the puzzlement. In Japan the female stomach cancer rate is high, but less than half the male rate, but New Zealand’s female colon cancer rate is only a little lower than the male rate. All these statistics are giving us clues as to what causes cancer—if we could only decipher them!
What causes cancer? Such a simple question, but one with no straightforward and universal answer, despite the billions of dollars that have been spent on it. Some of the villains are known, of course. Smoking, for example, accounts for about a third of all cancer deaths. Most of these cases involve lung cancers, but the 50 or so carcinogens (cancer-causing agents) in cigarette smoke and tar also induce bladder and laryngeal cancers and probably contribute to others. Part of the projected increase in our cancer rate will come from the hordes of young women who have taken to smoking in recent years.
Worldwide, the war against smoking is being lost. For every cigarette not smoked in the developed world over the last 20 years, three have been smoked in China, and throughout Asia and the former Soviet Union smoking is booming.
That there are large fortunes to be made is the simple explanation for the epidemic, and governments must shoulder much of the blame. Tax revenues on tobacco are vast, and most smokers die as the main productive phase of their lives is ending. The majority of lung-cancer patients die relatively quickly, and the cost of looking after them is much lower than the cost of supporting and nursing longer-lived workers through retirement and the protracted debility of old age. It is not in the economic interests of governments to ban or even discourage smoking. In our own country, total government health expenditure is eight billion dollars, and the government raises $670 million from tax on tobacco.
Ultraviolet rays in sunlight damage skin cells and produce skin cancers. We pay for those tans eventually. Asbestos fibres cause mesothelioma, an otherwise rare cancer of the lung. Some strains of papilloma virus (responsible for warts) probably cause cervical cancer. There are a few other solid connections, but then we drop down into weaker correlations: high meat/fat diets with colon cancer, heavy alcohol consumption with mouth and oesophageal cancer. When we come to breast cancer, prostate cancer, brain cancers, lymphomas (immune-system tumours based in lymph nodes) and the rest, there is no certainty about causes.
For nonsmokers in the United States, it has been stated that the risk of dying from cancer is approximately proportional to the extent you are overweight. Mice that are allowed unlimited access to food become overweight and develop an increased number of spontaneous cancers. Slightly underfed animals live longer and have fewer cancers. Maybe this is true for humans, too. Increased cell division gives cancer a beachhead, and maybe those unnecessary calories drive unnecessary cell division.
What about the byproducts of industrialisation: manmade chemicals, pollution, electromagnetic radiation and so on? A comparison of the incidence of cancer in highly industrialised countries, such as the US and Germany, with affluent but non-industrialised nations, such as the New Zealand of a few decades ago, Iceland and Norway, indicates pretty similar cancer rates, suggesting that environmental agents have only minor effects on cancer incidence. Dr Lynn Ferguson, of the Auckland Cancer Society Research Centre, comments that “pesticides and pollution probably account for one or two per cent of cancers. Epidemiological research just doesn’t support a higher figure. For example, there is no evidence that organically grown produce is any healthier than that produced with the help of sprays and fertilisers.”
Microwave transmitters, power lines and the like do not emit sufficient energy to damage biological molecules through ionisation. In fact, the gap between the energy produced in and around these objects and the amount required to ionise molecules is huge—a millionfold. If they cannot cause this sort of damage, it is difficult to understand how these agents might cause cancer. On the other hand, X-rays and gamma rays, produced in nuclear explosions and in certain types of medical equipment, have plenty of energy to damage cells. (The effect is exploited every day in the radiation therapy given to treat cancers.)
Few New Zealanders have been exposed to sufficient radiation to possibly cause cancer. One who has been is Ken Stutter who, as World War II ended, was transferred from Italy to Hiroshima to join the New Zealand Occupation Force. “We were camped for several months very close to where the A bomb went off,” he was later to recall. His unit was involved in cleaning up operations; defusing Japanese bombs and decommissioning midget submarines and other weapons.
When he returned to New Zealand he built a successful customs clearing and freighting business, and was also on the Whitbread Round-the-World Race committee. But from the late 1980s all these activities were curtailed as Ken was diagnosed with an unusual succession of cancers: carcinoma of the right breast (and later the left), a carcinoma beside the spine, cancer of the oesophagus and prostate. During surgery to attack the oesophageal cancer, the oesophagus was shortened by 100 mm, the size of the stomach was halved, a couple of ribs were broken and the left lung was collapsed to make room for the stomach up in Ken’s chest. His stomach is still stapled to his ribs.
“Oncologists told me that nobody had survived this operation for more that two years, so after eight years I’m well past my use-by date,” he told me with a characteristic grin. Since the surgery, Ken has had to purée all his food and eat four to six small meals a day—”a small price to pay for still being alive.”
Since radiation was the probable cause of his cancers, it is ironic that treatment for the prostate cancer entailed seven and a half weeks of daily radiation treatment following surgery. Several of his cancers have relapsed and required further treatment.
Not all of Ken’s battles have been medical. After a long struggle, he was eventually given a pension from the War Pensions Board, on the grounds that the radiation he had been exposed to in Japan was the likely source of his ill health. He was the first in New Zealand to win such a concession.
Although cancer has been around for a long time_5000-year-old Egyptian mummies have been found to contain tumours—it has been a major health problem only in the past century or so. In earlier epochs, infectious diseases—plague, cholera, typhoid, smallpox—regularly exterminated most of the population, keeping life expectancies relatively short. Only since public health measures, and later medicine, turned the tables on infectious diseases have most of us lived long enough for diseases of degeneration, including cancer, to become the main causes of death in Western societies. (Animals also contract cancer, but usually it is seen only in coddled pets and zoo animals. Few wild animals live long enough to die from cancer.)
The first person to determine a cause for a cancer was a London physician, Sir Percivall Pott. In 1775, he suggested that the frequent incidence of scrotal cancer in former chimneysweeps might be caused by soot ingrained in skin folds. The disease was most prevalent in newly industrialised Britain, where bathing was not a common practice. In Europe, where sweeps washed regularly, the incidence was much lower. A little later, nasal cancers were linked to the use of snuff.
The Industrial Revolution exposed many people, including children labouring in factories, to new toxic substances. By the late 1800s, those heavily exposed to oils and tars were developing cancers. Then, in 1895, X-rays were discovered, and within a decade 100 radiologists died from cancers resulting from lethal doses of radiation. X-rays were also found to induce tumours in animals, and by the time of World War I, some viruses had also been found to cause cancers in animals.
Wartime research into chemical weapons such as mustard gas showed that these compounds produced mutations—such as changing the eye colour of fruit flies—and some of the carcinogens in coal tar were also found to be mutagens.
Then DNA was discovered and now it is absolutely clear that carcinogenic chemicals act by causing mutations in DNA. They may alter only one in every few hundred thousand of the billions of bases that make up our DNA, but this is sufficient to cause crucial changes in some of the proteins made according to our genetic blueprints.
The past two decades have witnessed an exciting leap forward in our understanding of what has gone awry in cancer cells. This information, coupled with advances in gene therapy, may soon make it possible to insert the correct copy of a gene into a defective organism, even if we don’t know what caused the defect in the first place. (We may not always know why some component in a car engine fails, but we can fix the car by replacing the component. A similar approach to the mutated genes that lie behind cancer does not seem far-fetched today.)
This new knowledge also gives us a vital handle on how a cancer cell differs from a normal cell. Present cancer treatments are not as effective as they might be—to say nothing of their unpleasant side-effects—chiefly because they don’t discriminate well between cancerous and normal cells. Most simply kill quickly dividing cells, destroying many rapidly proliferating normal cells, while letting more indolent cancer cells off the hook. Knowing how cancer cells differ from normal cells should lead to the introduction of more selective and effective therapies.
And new tests springing from this knowledge should enable doctors to make earlier, more certain diagnoses than are possible today. The central problem with cancer, from a medical point of view, is that by the time it is diagnosed, the original tumour has seeded secondary tumours at many sites in the body. It is the quiet, unobtrusive way in which the disease gains ground within us that makes cancer so insidious—and so frightening.
For as the aberrations that push a cell towards the brink of malignancy accumulate over decades, we ourselves will be blissfully unknowing. They cause no stab of pain, no headache, no nausea to alarm us. For the most part, we become aware of cancer only when the evil of malignant transformation is long completed, and a tumour has reached such a size that it obtrudes upon our sensibilities—pressing on a nerve, partially blocking a duct. By this time it will be a centimetre or two in size and contain several billion cells. We visit our GP, who sends us for tests. Within a week or two, our anxiety will be confirmed; we have cancer, and life will never be taken for granted again.
Usually treatment comes pretty quickly. Surgery followed by chemotherapy or radiotherapy is common for solid tumours—breast, bowel, brain and the like—but surgery cannot be used for immune system tumours, which are disseminated in bone marrow (leukaemias) and lymph nodes (lymphomas). The hope—often vain, alas—is that the primary tumour will not have metastasised, and surgery will “get it all.” But you can never be sure that a tumour hasn’t metastasised, so radiotherapy, which can zap a small area, may be used for local insurance, and chemotherapy, in which drugs are circulated throughout the body by the blood, provides long-range cover. Within weeks you have gone from a state of ignorant health to being an insecure cancer patient. The transition—not to mention the side-effects of treatment—can be traumatic.
Into this breach steps the Cancer Society of New Zealand. It provides an impressive range of free services for the cancer patient, although the options may differ from area to area, since the society exists as six autonomous divisions, which make their own decisions about services. Providing education, information and support for patients are some key aspects of the society’s work.
Evelyn Fickling, who until recently oversaw support activities for the Auckland division, told me more. “People with cancer are often ostracised,” she said. We were watching a group of women learn how to use wigs, scarves, and cosmetics to disguise hair loss and other marks of cancer treatment in a course called “Look good, feel better,” run by the cosmetics industry in the society’s premises. “Some have pressure put on them to quit work, or are sacked once they are diagnosed. Quite a few end up under great financial pressure—having to live off credit cards while waiting to get a community services card. But you can’t pay for things like childcare with a credit card. We are often able to provide relief. Last year we gave out 4300 meals, not just for patients but for their families. Cancer can put families under great stress. Often marriages split up.”
As well as organising general support groups for cancer patients, some branches also run specialised groups, such as the Lymphoedema Group (removal of lymph nodes can lead to swelling, pain, and loss of movement in limbs), the Kiwi Lost Chord Club, and the Breast Cancer Support Service. In the Auckland Division, 46 women and one man (Ken Stutter) who have had breast cancer took up dragonboat racing in 1998. “Busting with life” read the slogan on their T-shirts.
The Thursday morning support group in St Barnabas’ Church lounge, Mt Eden, has just begun. Twenty people have straggled in, mostly middle-aged or older, three-quarters of them women. There is a bit of jocularity before things settle down. Each member describes how they are getting on with treatment or medication, and with life.
Helen, an elderly woman with flowing grey hair, has developed a hernia near the site of her colostomy, and she is nonplussed at having to wait eight weeks before it can be operated on. Two others, also with colon cancer, have similar hernias. Allan, an ebullient ex-detective, tells her that he has been operated on twice to repair the hernias, and neither attempt has been successful. “You might just have to live with it.”
He cocks an eye in my direction. “Forty-six members of this group have died in the past three years. There is no room here for anything less than total honesty. You comfortable with that?”
There’s nothing comfortable about listening to cancer stories, but I nod my head.
Laurie, small and wiry and wearing Jandals, was diagnosed with lung cancer five years ago. Two-thirds of a lung was removed, and he was sent home with an intractable abscess in the remaining part. “A Chinese herbalist friend of ours treated him with a special concoction of herbs for a year,” his wife, Helen, says. “You should have smelt it cooking on the stove—it really stank. Laurie had to drink the liquid.”
Laurie agrees: “You had to knock it back pretty quickly. Not a brew to linger over.” Still, apparently it had done the trick—though Laurie points out that it was the abscess that was treated, rather than the cancer. “The herbalist was very specific about being able to treat some things, but not others.” To everyone’s amazement, Laurie still smokes.
Shirley Gifkins had a tumour in her large bowel, and had to have most of the bowel removed. But subsequent radiation treatment so burnt her small intestine that almost all of that had to be taken out also. “I’ve got almost no intestine left. Food often goes straight through me, and I have accidents. It can be very embarrassing to go out,” she confides. No intestine means food cannot be absorbed, so Shirley is one of five people in Auckland on total parenteral nutrition (TPN). All her nutritional requirements are made up in a sterile liquid, which she hooks directly into a vein through a catheter in her chest. “Each evening it takes me up to half an hour to hook up, and the two litres of liquid take 12 hours to drain into the vein.”
“TPN costs $2100 a week,” she tells me. “I feel quite guilty about that.” She doesn’t look to have any surfeit of cash. “But I still crave food. Food used to be one of my consolations. Now I can eat very little, and certainly nothing with fat or fibre. But at times I just can’t help myself and I eat something bad. Then I get such bad diarrhoea I vow never to do it again, but I do. I also have trouble with infections in the line, and if my temperature rises I get whisked to hospital by ambulance urgently. Each week I have to go to hospital for a check-up anyhow. I’m not enjoying living like this at all, and it’s going to be like this for the rest of my life.” In the nine months that Shirley has been on TPN, the line has had to be replaced five times (each time in a slightly different site) because of infection. She is a little concerned that she might run out of insertion sites. Most of the group consider that Shirley has a tougher time than most.
It’s difficult to tell how old Elizabeth is—her face has been so altered by surgery and skin grafts. At age 10 she was found to have a rare inherited cancer, Gorlin’s syndrome, and now, she tells the group, she has lived with it for 40 years. Associated with a mutation in a tumour suppressor gene, Gorlin’s has many possible manifestations, a greatly increased susceptibility to basal cell carcinomas being just one. Elizabeth has had a lifetime of cancers erupting on her skin, and just as regularly has them cut out. Internal tumours can also arise. Today she has a plaster on her upper lip: “I think a stitch tore out when I laughed at the jazz club last night.” Not long ago she had ingrown eyelashes removed and a new eyelid reconstructed from skin off her hairline.
Living with cancer for 40 years is no mean achievement, and Elizabeth is not the only one. Later I meet Mavis, 79, very regal and well-dressed, diagnosed with colon cancer when she was 39. She has since had other brushes, in the most recent (seven years ago), losing a breast.
Ken Congdon is another survivor in the group. Diagnosed with multiple myeloma six years ago, he was given a couple of years to live. Despite having 10 days on chemotherapy every six weeks, he still appears completely healthy.
Some stay in touch outside the Thursday gatherings, and during the meeting several give reports on those who are absent. At another meeting, the group is told of the death of a member, and we all bow in a minute of silence.
I’m starting to get to know these people, and arrange to meet some of them in their homes. Shirley Aspden, an attractive woman in her late 40s, has gone several rounds with cancer already. She had a melanoma removed from below her left collarbone in the early ’80s. “It was taken off under local anaesthetic at Middlemore,” she tells me. “One of the women in the theatre wore glasses in which I could see a reflection of all that was being done to me. The mole seemed to have deep roots and I saw them scraping the bone. It was horrible.” She was left with an unsightly scar, but plastic surgery a few years later improved its appearance.
Late in 1995, Shirley woke one morning to find that she was bleeding slightly from the rectum. “I thought it was just haemorrhoids—everybody gets them sooner or later—but my husband felt that I should see a doctor. I had colon samples removed during colonoscopy, and was initially told that it wasn’t cancer. Then they called me during our dinner celebrating it not being cancer and wanted a second sample. This time the doctors decided it was cancer, and I had surgery. The surgeon was elated, said they had got all of it, and when I enquired about the possibility of a relapse, he told me that I had no more chance of getting cancer again than anyone else. Reckoned I didn’t need radiation treatment or chemotherapy. I’d given up my job, but after a couple of weeks I felt so good that I got another position.”
In mid-1996 the unthinkable happened. The cancer returned lower down the colon. “This time the doctors said that they couldn’t operate, and I was given weeks of radiation treatment. The side-effects were pretty severe and unpleasant.” But the cancer retreated. Now, however, it has returned again, untreatable. “I was offered chemotherapy, but it would take months and would probably only extend my life briefly. So I’ve decided not to have any further treatment, and instead enjoy a better quality of life. The doctors and oncologists are very good about pain relief. I take 18 pills a day—morphine, muscle relaxants, sleeping pills, the works. There is no reason why anyone with cancer should suffer pain. If I need more relief, it’s just a phone call away.”
While Shirley herself has come to terms with the likelihood that her life will end prematurely, and maybe soon, she says her husband is taking it harder. “We were working towards retiring in the not too distant future, and, with our children all independent, planned to travel and enjoy life together. Now none of that looks likely. I don’t want to travel at present. Staying here close to my family is enough.”
In reviewing her experience with cancer, Shirley has one regret. “I wish that I’d been given radiotherapy after my initial surgery when everyone was so confident. That might have saved me from getting where I am now. Later I asked an oncologist why I hadn’t been given it initially. He told me that they simply didn’t have the facilities to give it to everyone, so only those in greatest need got it.”
Allan Helleur, whom I met at the first session, will be 69 this year, and left the police in 1975 after a dozen years as a detective, then worked as a taxi driver for 15 years. After a family function at Port Waikato in 1992, he experienced a severe pain in his side, and drove straight to hospital, where he was admitted. The pain came from a ruptured gall bladder. Surgery was followed by infection, more surgery, gangrene, more surgery, the discovery of colon cancer and . . . more and more surgery. Then came 14 months of chemotherapy, and regular patronisation of the country’s medical facilities has continued.
Although from the outside Allan seems to sport a well-rounded puku, appearances can be deceptive: his stomach bulge consists of a hernia or two and a sort of bolster. He used to have a colostomy bag as well, but the colostomy was reversed. Formally, his cancer is in remission, but he still experiences considerable pain from the ructions that his insides have undergone, and needs regular medication to relieve it. He speaks highly of the pain clinic at Auckland Hospital.
Other legacies of treatment also remain. “My immune system has never recovered from chemotherapy,” he tells me. “A couple of years ago I had a flu shot and got flu for weeks, and this year the same thing has happened.”
He’s a regular at the Thursday meetings. “Humour is really important—with it you can survive. Depression, misery and worry kill you. I go along to the group and tell them, ‘I’m just so pleased that I’m not as crook as some of you bastards.’ It raises a smile.”
Underneath, he’s more vulnerable. “We keep a record book and photos of everyone at the group. Eventually they get so tired they can no longer make the effort to come. Some prefer to die at home, others in a hospice. Now another woman is in St Joseph’s Hospice, and she’s only going to live for another day or two. I saw her yesterday and gave her a back massage. She wanted a human touch. If she’s still alive tomorrow, I’ll go again. Seeing that there are only about 25 people who loosely belong to the support group at any one time, it’s a devastating turnover. You don’t get too close to people. A bit of you dies with each of them. If too many go, there’s not much left of you, if you see what I mean.”
Allan reckons that euthanasia should be allowed. “I’ve seen a lot of people want to die, not for their own sakes, but for the sake of their relatives. It’s tough and uncertain for relations dealing with a slow death. Sometimes people linger for weeks, and the patient knows that they are not going to recover. It’s preferable that they should go to a better place and that the relatives shed their tears and get on with their lives.
“Support group members often go out together for meals or to the casino or somewhere, partly for their own sakes, but partly to give whoever is looking after them a break. Caregivers spend all their time looking after someone—and that someone may not be particularly easy to live with or grateful for their efforts. Where’s their life?
“I’m still alive because I don’t want to die. When you go into hospital, they try and put really sick people in the bed nearest the door—the death bed. It’s called that because you can get a bed out from there without disturbing the rest of the ward. They are always trying to put me in that bed, but I say, ‘No way!”‘
Not all cancer patients are old. While it is true that 100 older people get cancer for every child who contracts the disease, childhood cancer seems a particular travesty. Cancer is actually the leading cause of death from disease among those under 15 years of age—even though cure rates in this group are about 70 per cent. Several organisations try to brighten life for the 120 New Zealand children and teenagers diagnosed with cancer each year.
The Child Cancer Foundation was started in 1978 by parents of children with cancer. It runs support groups, provides financial help to remedy the educational disruption cancer causes, has a couple of special holiday homes, finances research, runs training courses in paediatric cancer nursing and oversees CanTeen, an organisation for teenagers with cancer, run largely by the teens themselves.
Camp Quality is a separate organisation which holds camps for kids with cancer. In January I visited Carey Park, in the foothills of the Waitakere Ranges, where the main Auckland camp was staged this year. There were 70-odd kids, ranging in age from 5 to 16, each accompanied by a buddy or companion. Thirty helpers ran the camp.
Kids with cancer seem to lose their childhood in a round of hospitals, treatment, tension and pain, with the shadow of untimely death never too distant. Camp Quality, which has been running in Auckland for 14 years and elsewhere for shorter periods, aims to redress the balance. There is no talk of illness or treatment, just positive, wall-to-wall fun. Buses take campers to Rainbow’s End, the zoo, Parakai Aquatic Park, Whenuapai airbase for helicopter rides and police dog demonstrations—nonstop action. “We never tell the kids in advance where we are going. They just get on the bus and the destination is a surprise,” an organiser tells me. On this day archery, abseiling, climbing, kayaking, a glorious flying fox, handcrafts, horse rides and more are running.
I watch a lively 12-year-old wearing a T-shirt that says “Fear tortures the weak” scale the 10-metre-high abseiling tower. Roped up and helmeted, some kids, brimful of confidence, bound down in just a couple of seconds. Others inch their way down, taking a minute or more, with an expert descending alongside murmuring encouragement. They receive loud cheers for completing the descent.
Many of today’s helpers are from the Thames and Mercury Bay Lions Clubs, and Lions also provide much of the funding for the camps. Parents are not allowed to attend. Many families crack under the strain of having a child with cancer. A break does everyone good. Companions (18 and over), carefully screened as to their suitability, become stand-in parents and friends for a week. They are matched to their campers as closely as possible, but it’s a struggle getting sufficient males. Companions are on 24-hour duty, and by the end of the camp they are exhausted.
Nick, 19, a companion at the January camp, was once a camper himself. He developed a large lump in his groin when he was eight years old. “Nobody was able to tell us what it was until it was removed. Then I was told I had non-Hodgkins lymphoma, which meant nothing to me. I said something like, ‘OK, can I go to KFC now?”
But he soon learnt that it wasn’t OK. His chemotherapy lasted for six months and involved a succession of spells in hospital and interminable pills and injections. “I really hated taking the pills. I wanted to know what they were, but they said, ‘Just swallow them.'” So bad was his aversion to taking pills that a psychologist was called in. Eventually, he found a way he could get them down: drop them into a glass of milk and gulp the lot in one go. Having bone marrow samples removed from the back of his pelvis was no fun, either.
What effect did it all have on him? “I lost a year of school, and was worried about that. But when I eventually went back to school, I found that I hadn’t missed anything important. I had actually gained a lot of maturity. Spending so much time with adults, such as doctors and nurses, was probably responsible. While other kids were playing tiggy, I was playing cards.”
This is Nick’s second year as a companion. He still fondly recalls the mischief he got up to as a campersupergluing the tops on girls’ shampoo bottles, shoes to ceilings, etc—and is happy to give something back to an organisation that has given much to him.
I am the only male at the regular Friday morning multidisciplinary meeting of the Hibiscus Coast Hospice, a mere listener while seven women (mostly nurses plus a counsellor or two) briskly but sympathetically discuss the 28 patients on the hospice’s books, plus two new referrals. For my benefit, they succinctly outline what is wrong with all the patients before considering their current status and how they can best be helped. These people, all terminally ill, are, for the moment, being managed in their homes. Most are elderly, but not all. One is a mother in her early 30s, separated, and with two young children. A couple of others are in their 40s.
“We are seeing more patients who are younger,” Andrea Zwart, the senior nurse, tells me. “It’s a disconcerting trend.”
The Hibiscus Coast Hospice operates out of a house overlooking the Orewa Estuary. The building has a lounge—used for meetings such as the one I’m attending, and the briefing of volunteer drivers to follow—but has no facilities for accommodating patients. Those requiring “hospicealisation” go to a centre on the North Shore.
“Having a terminally ill patient at home can be very demanding,” coordinator Adrianne Dowman explains. “If one of an elderly couple becomes seriously ill, often their partner just can’t cope with looking after them. We can provide trained volunteers to support people in their homes, we can organise household help and care for them from Waitemata Health, arrange drivers to get them to their appointments, or admit patients to rest homes or the North Shore Hospice for a few days’ respite or to get symptoms under control.” Some of these services are similar to those offered by the Cancer Society, with whom they cooperate. The Cancer Society tends to be more involved with newly diagnosed cancer sufferers; hospices are only concerned with the terminally ill.
Two hospice nurses are on duty every day, and one is on call 24 hours a day to visit and assist patients and their families. Andrea Zwart allows me to join her on her rounds for a couple of hours. The first visit is to a 47-year-old man with lung cancer.
“I was given six weeks to live two years ago,” he whispers. “Only two per cent of patients with my sort of cancer live this long.” His voice is husky and quiet, his skin extraordinarily pale, but his eyes are bright.
“I’ve had a woman from Work and Income to visit me,” he continues. “She was nice, but says that they can’t do anything much for me. Although my income has dropped hugely, apparently I still earn too much. My wife [a teacher] has used up all her leave and can’t get any more time off to look after me.”
He is staying with his elderly parents, but planning to move to his own place shortly. Andrea sympathises, and says that she can get some home help for him, plus 28 days a year in a rest home or hospice free, but it’s not what he wants. He wants his wife at home.
We move on, to an old man in his home unit in Orewa. He is wrapped in rugs in a lounge chair, the heater going, adult children gathered round. Two sons have come over from Australia. He has just spent some days in the North Shore Hospice, but insisted that his daughter stay in attendance while he was in there. She looks drained, but used the time to assemble an album of his life, mainly very old photographs, but a pot-pourri of other meaningful items—such as his car registration documents—as well.
“Dad never throws anything out. He’s been a great hoarder,” she says, and the sons laugh gently in agreement. They are big, hulking fellows. How could this fragile wraith, comatose in his chair, be their father? Although he had grasped my hand when I entered, and roused himself sufficiently to mutter a comment about the pretty nurse, he had quickly lapsed back into sleep or some other place apart, just sitting there, head to one side, eyes closed. His wife has gone down to the shops.
Andrea has delivered a sizeable bag of pills for him from the pharmacy, and talks to the daughter, who seems to be bearing much of the burden of looking after her father. Late the previous night, when he came back from the hospice, they had found themselves without a particular pill, essential if the old man was to pass a peaceful night. They had managed a successful improvisation, but the right medication is vital. Andrea and the daughter mention his driver, and it didn’t seem that they were alluding to transportation. After we leave, I ask about it. “It’s a special motorised syringe that you set up which delivers medication slowly and continuously under the skin. The patient can carry it around in a pouch and the needle connects to the syringe via a plastic tube. He’s got one, but I’d say now he’s over-sedated.” It’s a delicate balancing act, relieving distress and pain, but preserving sentient consciousness, so that what remains of life can be appreciated. Getting the balance right seems to be a major part of hospice nurses’ work.
Well manicured gardens surround the North Shore Hospice, which is just a few hundred metres from both North Shore Hospital and Lake Pupuke. The low brick building is four years old and has beds for nine, plus several lounges.
During my guided tour, a specialist bath shaped like a half cheese, curved edge down, attracts my attention. It rotates into a vertical position and is entered via a side door. The bather sits upright on a shallow seat, and the bath can then be rotated to a more horizontal position for filling and washing. Thinking that one of these would be just the ticket for my own rather frail parents, I ask clinical services manager Tricia Clarkson how much they cost. “Oh, about $20,000,” she replies nonchalantly. It looks as if it will be scorched almonds again for Mother’s Day.
“We specialise in palliative care,” Tricia informs me after we have returned to her office. Anticipating my ignorance, she passes me a leaflet. “Palliative care is defined as care of patients with active progressive far-advanced disease and limited prognosis, for whom the focus of care is quality of life,” it states.
Tricia fills in the details. “Last year we saw 386 terminal cancer patients. An average GP sees four similar cases a year. We are really a specialist nursing service, providing much more intensive care than public or private hospitals can. What we do is low-technology, but high-care.
“In the popular mind, a hospice is a place where people go to die. That isn’t true any more. Sixty per cent of the inpatients we have here go home again, and more than half of our patients die at home. We are becoming involved much earlier in people’s illnesses. Patients are referred to us by doctors, and increasingly by the hospitals themselves. We are also running a growing number of bereavement support groups: one for parents who have lost children, others for teens and kids who have had a parent or grandparent die, and groups for those who have been widowed.”
The hospice has a full-time medical director and three part-time GPs, 24 nurses including 11 part-time community nurses, a few organisers and counsellors and about 630 volunteers. “We are absolutely dependent on volunteers for our existence,” Tricia tells me. “They drive, look after gardens, make morning and afternoon teas here for patients and day groups, visit patients, clean the building, maintain hospice cars, do laundry, everything you can think of. And they fundraise tirelessly. We make no charge for any of our services. The Health Funding Authority pays us $500,000, and we have to raise an additional $1.2 million per year from the community.”
I’m taken aback. Over a million dollars a year is a heck of a lot to raise.
“Yes, it’s over $3000 every day of the year,” Tricia informs me. “We have lots of amazing fundraisers. House and kitchen tours, fashion parades, golf and tennis tournaments, garage sales, preparing and selling epicurean preserves. We have a fabric shop in the basement that sells offcuts from manufacturers at very reasonable prices. I made this outfit I’m wearing from material I got there. A woman whose son we looked after a few years ago runs raffles at Housie evenings and has raised $15,000 for us. Lions, RSA, bowling clubs, CWI, The Warehouse, the Navy, Rotary—they all help us.”
Anne Martin at the national office of Hospice New Zealand tells me there 37 member hospices nationwide, not all of which are able to offer services as comprehensive as those on the North Shore, or even the Hibiscus Coast.
“We are trying to negotiate a better deal for hospices with the Health Funding Authority,” she says. “If the money doesn’t come through, quite a few hospices will have to dramatically reduce the services they offer, because they just can’t keep up the fundraising. At the moment, there is clearly a discriminatory lack of treatment against the old and terminally ill. Maternity services are fully funded, acute infectious diseases are well catered for, accident victims are looked after, but the government isn’t too interested if you are old and dying.”
A cynic might say that the terminally ill contribute little to the economy or the ballot box.
Tricia McMahon from the St Barnabas support group has invited me to accompany her to a training course for volunteers at St Joseph’s Mercy Hospice in Auckland’s Mercy Hospital. St Joseph’s community care programme has been running for 20 years. One of the nurses describes the work to the 20 or 30 trainee volunteers who have come, and indicates how they might fit in. A chaplain speaks about the pastoral care team, and an experienced volunteer gives a moving account of what community care has meant to her.
The highlight for me is a talk by Lexie Candy about her biographic service. Lexie, slender, middle-aged, softly spoken, lost her husband six years ago. They had been married only a short time. Following his death, she realised there was much she did not know about him, and resolved to record her own mother’s story before she died. Her mother (now in her 90s) spoke her recollections into a dictaphone, and Lexie used a word processor and some editorial nous to produce an account of her life.
In the past two years, she has compiled a further 25 biographies for dying cancer patients. Spiral-bound, 5 to 40 pages in length, with a few photos, they are the sort of item that can easily be photocopied for interested relatives, and some of the subjects have been happy for their accounts to be made available in hospices.
“When people no longer feel they are useful members of society, recounting memories that others might like to hear gives their lives meaning,” Lexie says. “One lady, paralysed from the neck down, told me a really wonderful story. Her unborn grandchildren will be able to read it and get some idea of what their grandma was like.
“To start with, grumpy old Ray told me that he had driven a truck all his life, and had nothing to say. But I went back and he opened up. Most people are quite keen to do it once they have considered the idea, and working on their life story often gives an opportunity for healing the heart.
“I think that people are often more whole when they are dying than at any other point in their lives. All illusions are stripped away, and this gives a chance for real reconciliation and spiritual growth. It’s almost as if their physical weakness frees up a different kind of energy. The enormity of the illness puts life in perspective. People become focused on what is really important to them. Some of them make the most of every moment. One lady even wrote that her last month was the best of her life, that her cancer had been a blessing. The dying can indeed teach us how to live.”
Ken Stutter is one of those who have written their story with Lexie’s help. It contains an outline of his life, with an emphasis on the high points. I read an account of his freight-forwarding business, which often took on jobs others shied away from, such as transporting the 25-metre 90-tonne Taupo Cat catamaran from Cairns to Taupo in 1987. Everyone said it couldn’t be done. Ken thought otherwise, and spent nine months preparing. Taupo Cat was sailed to Napier, disassembled into two sections and trucked to Taupo. En route, 142 power and telephone lines had to be severed and rejoined to allow passage of the huge loads, yet nobody was deprived of power for more than 11 minutes. A job to be proud of.
Tricia mentions to me that Ken is upstairs, staying in St Joseph’s for a few days. His handshake is hard, but he looks drawn. I know that he takes few painkillers, and suffers considerably. “I’ve been overdoing it a bit,” he admits, “taking someone to the hospital every day. I can never get parking nearby, and have to walk miles from the far side of the Domain. Some of my neighbours started to get worried about me. I’m back under control now, and I’ll be home in another couple of days.”
Unless home was pretty sumptuous, I’d be in no hurry. St Joseph’s is pleasant indeed. Each patient is in an individual room, large enough for a relative to stay with the patient. Comfortable armchairs, tasteful pictures, flowers on occasional tables outside each room, carpeted floors, staff in street clothes all add up to an ambience that has nothing in common with that of a public hospital. On this fine autumn day, the lounge is magnificent, drenched with sun and offering panoramic views across Auckland to Tiritiri and Moehau.
Ken, as he candidly admits, has survived well past his “use-by” date. What is his secret? “To be honest, I’ve never accepted that I have cancer,” he confides. “I keep the word out of my mind, although I accept that I am sick. And I’ve been enjoying myself, too. Went swimming with the dolphins at Kaikoura last year. Fantastic. And I’m really looking forward to the America’s Cup.”
Courage, hope and an indomitable spirit may well extend a patient’s life, but drugs are important, too. Most existing anticancer drugs date from 1950 to 1970, well before scientists had any real knowledge of what goes wrong within cancer cells. Many emerged from programmes in which hundreds of thousands of chemicals from all sorts of sources were screened for their ability to inhibit the growth of cancer cells. Relatively few new anticancer drugs have been introduced since the mid-1970s because tougher safety requirements have pushed up costs and slowed development times. A decade or longer can easily elapse from the time a compound is first screened until it is cleared for general use in treatment.
Nonetheless, treatment has improved steadily over the past 20 years. Optimal combinations of existing drugs have been determined, and treatment schedules honed to match vulnerable points in the life cycles of cancer cells. Cure rates for some cancers, such as testicular cancer and childhood lymphomas, may now reach 70 or 80 per cent.
However, treating cancer is more complex than treating most other diseases. As we have noted, cancer is really a hundred diseases, and the stage of spread at which diagnosis is made will also influence how a tumour is attacked. Each patient’s course of therapy receives meticulous planning and regular re-evaluation from oncology specialists, both in chemotherapy and in radiotherapy.
The emergence of drug resistant tumours in patients undergoing treatment is a major problem. Susceptible cells are killed, but some cells find ways of living with drugs—perhaps by pumping them out of the cell—and they continue to divide. The drugs’ effectiveness diminishes, and the patient can no longer be put into remission. Administering combinations of drugs which work in different ways slows the emergence of resistance, but usually doesn’t eliminate the problem.
Our burgeoning knowledge of tumour biology and the biochemical changes that have taken place in malignant cells has suggested a whole range of new targets for drugs. There have been advances, too, in our ability to determine how drugs interact with their targets. Using computer simulation, it is even possible to predict such interactions for as-yet unsynthesised compounds.
New anticancer drugs might not even aim to kill cancerous cells. They might simply be a spanner in the cell’s proliferative works. But given the complexity of the cellular pathways, and the variety of aberrations which can lead to cancer, a single “cure for cancer” looks further away than ever.
Tackling the complexities of cancer is a multi-billiondollar research enterprise, with tens of thousands of scientists around the world working on various aspects of the problem. In New Zealand we have several world-class groups of cancer researchers. Tony Reeve’s Cancer Genetics Group at the University of Otago is concerned with tracking down molecular and genetic changes inside cancer cells. This group has identified an inherited mutation which lies behind a spate of stomach cancers in the large McLeod family from the Bay of Plenty. In the past 30 years, this family has suffered 30 deaths from the disease, the youngest in a 14-year-old.
Stomach cancer is usually fatal because it is not discovered until it has spread. Reeve’s laboratory has developed a simple screening test for the mutation, which means that carriers can be identified early and closely monitored. The mutation has since been found in similarly afflicted British families, and is likely to be at the root of this cancer elsewhere.
Reeve’s laboratory also has a longstanding project studying Wilm’s tumour, a childhood kidney cancer—in which it has also achieved internationally acclaimed breakthroughs—and is trying to establish whether some childhood leukaemias and lymphomas actually arise while the baby is still in its mother’s womb.
The forte of the Auckland Cancer Society Research Centre, situated within the University of Auckland Medical School, has historically been drug development. Amsacrine, developed by the lab, has been in clinical use for treating leukaemia for two decades. Asulacrine, a newer version of the drug with broader activity (including efficacy against solid tumours), has undergone clinical trials, and two other drugs, DACA and DMXAA, are being trialled around the world.
Many other potential drugs are at various stages of investigation, including agents which seek to block malfunctioning signalling pathways in cancer cells.
Developing drugs to treat solid tumours effectively is one of the lab’s goals. Solid tumours often have a poorly organised blood supply, which means cells in their interiors are low on nutrients and oxygen, barely ticking over—hardly ideal targets for existing anticancer drugs. Dr Bill Wilson in the group has reasoned that it may be possible to design “prodrugs”—harmless compounds which be come activated and toxic only in the oxygen-depleted interiors of tumours. Several promising compounds have been identified.
A second approach to prodrugs being explored by the lab is designing and testing compounds which are activated by modest doses of radiation.
Last year there was great excitement when it was announced that Dr Judah Folkman of Harvard Medical School was curing mouse cancers with drugs which targeted the blood supply to the tumour. DMXAA, developed by the Auckland lab over a 12-year period, is one of the first drugs of this type to be undergoing clinical trials anywhere. It induces cells in the tumour to manufacture a protein that attacks their blood vessels. In a curious twist, thalidomide, notorious for its grievous effects on babies in the 1960s, has been found to enhance the effectiveness of DMXAA.
Developing drugs is fraught with difficulties. One of the more intractable problems is how to test them. Cell lines—established, usually long ago, from cancers, and growing in artificial growth media—are the usual choice. Bruce Baguley, a director of the Auckland lab, tells me that establishing such lines from fresh tumours is very difficult. “And we are finding that the properties of fresh tumour cells may be quite different from those of cell lines,” he adds. “We have some compounds on trial which kill cells from 80 per cent of fresh lung and ovary tumours, but only work on 10 per cent of cell lines.”
Another team within the lab evaluates possible environmental mutagens, and also identifies the types of dietary fibre that might confer protection against colon cancer. Maori and Pacific Island rates of colon cancer are much lower than Pakeha rates, and it is thought that some dietary factor could be responsible.
It is worth noting that most of the research funding for these labs (and the majority of other cancer researchers in New Zealand)—millions of dollars annually—comes from the Cancer Society. The government-funded Health Research Council (HRC) uses the excuse of the society’s research funding to pare its own monies spent on cancer research. “Research is an investment in our future health,” notes the society’s medical director, Peter Dady, who would like to see both the society and the government spending more on cancer research.
Although support services are the most visible of the Cancer Society’s operations to the cancer sufferer, they represent only a fraction of its operations and interests. Research is clearly another big-ticket item for the society, and in an era when the government’s approach to health is increasingly “hands off,” the society sees an increasing role for itself as advocate for the public interest. Indeed, it is calling for a national cancer control strategy in which the government, the Cancer Society and other interested groups define realistic goals, decide who does what to achieve the goals, and arrange to measure the outcomes.
David Perez, a Dunedin oncologist and a Cancer Society spokesperson, says that very little monitoring of outcomes is done at present, so we don’t know the success rates of various treatments, or how many lives screening programmes are saving.
“The UK recently found that it was less successful than Europe in cancer treatment,” he tells me. “Europe was more coordinated, more forward thinking. As a result, the UK has had a revamp. We are, I suspect, like the UK. Australia is ahead of us. Expect the Cancer Society to become more vocal, not just on the need for the cancer control strategy, but on lots of issues.
Another emerging issue will be equity of access to cancer services across the country,” David says. “There was a fuss in Auckland recently when it was learned that some modern chemotherapy drugs were not being used there, although they have been available in the Waikato and elsewhere for several years. The reason is simply cost. A course of taxol (one of the drugs in question) costs $15,000-plus, whereas older treatments are only $2000. It’s an issue for the Health Funding Authority.”
Another area which concerns the Cancer Society is health promotion and cancer prevention. “Nationally, we are spending about $600,000 annually on health promotion, and when other programmes run by the divisions are included, it would be well over a million dollars. We are concentrating on anti-smoking and anti-melanoma campaigns, but we also promote healthy diets and exercise,” says Betsy Marshall, an organiser for the society.
Diet is not trivial in the overall scheme of cancer prevention. Apart from the well established benefit of a high fibre intake, it is thought that some fruits and vegetables contain substances that confer protection against cancerretinoids, indoles and others. Synthetic versions of some of these compounds have also proven to be effective.
Certain drugs also have protective effects. Tamoxifen, a failed birth control compound which binds to cell receptors for the hormone estrogen (effectively a growth factor for some breast cancers), shows promise not just in breast cancer treatment but also as a breast cancer preventive in women at high risk for the disease. Raloxifene, a newer anti-estrogen, is even more effective and has fewer side-effects.
Exercise, too, seems to have some ill-defined benefits in cancer prevention. It has been said that the healthiest anticancer lifestyle is to run from salad bar to salad bar!
In its advocacy role the Cancer Society has argued in support of certain screening programmes, namely breast and cervix. “We don’t consider that the data so far supports screening for colon and prostate cancers, although colon cancer testing will be ready before too long,” David Perez advises. “Cancer genetics is also an area in which more could be done, given that 10-15 per cent of cancers probably have a strongly inherited component, such as the McLeods’ stomach cancer. There is a growing need for genetic counselling.”
In preparing this article, I was impressed by the breadth of the Cancer Society’s engagement with cancer. From mounting a multitude of support services, to public education and research funding, it tackles it all, spending (and raising) something like $15 million per year. The hospices were also inspiring in their compassion and dedication to the dying and the bereaved. They get some $12 million from the government for services they render to hospital patients, but probably raise considerably more than that again by their own efforts.
Despite government spending on cancer (mainly through hospitals), I couldn’t help wondering whether it was getting off relatively lightly in some areas, especially in palliative care and research funding.
Just before this issue went to press, I returned to the Thursday morning support group. Many of the familiar faces were there, although some were missing. Ken Stutter was anaemic and receiving iron injections. Allan Helleur still had the flu, and didn’t want to give it to any of the others. Another man was in hospital. Surreptitiously, a couple of cards were circulating for signing. Jesper and Shirley Aspden were celebrating their birthdays. We enjoyed slices of birthday cake, and wished them—with more sincerity than is usual at such times—many happy returns.
Do I still feel as apprehensive about cancer? Not quite. A minority of sufferers are cured, and live wary but perhaps more appreciative lives for decades. For those who perish prematurely—still a majority—pain relief and symptom management are available and seem to have become highly developed arts, enabling most patients to die peacefully at home. Novel drugs—as always, not quite in hand—may begin to erode the size of this majority within the next 10 years.
A slow death offers ample time to set one’s house in order. It offers a challenge to our humanity as well, whether we are the sufferer or one of those who reach out to comfort. For it is a great affirmation of human dignity to face death with courage when we know it is closing in fast. It is a mercy, too, that for some the knowledge of the imminence of life’s end enhances the sweetness of their latter days.
There is hope amidst the heartbreak.