It was the weekend after the over-turning of the world’s first voluntary euthanasia law. Twynam is Australia’s third-highest mountain, near Kosciusko, but that is of no moment to this story. And I am afraid that this is a story of great pain and despair, though tempered by times of great hope and happiness. My wife, Lynne, and I first climbed Twynam on cross-country skis in October 1992 after being driven back by blizzard or rain on two earlier occasions. It was a brave triumph for Lynne.
Four years earlier she had been diagnosed with breast cancer. In 1988 Lynne had the lump cut out and then every work day for a month she went to the hospital for radiation treatment — lying on a bench being zapped from several directions, getting up, getting dressed and going to work as if nothing happened. It was followed by a week’s intensive radiation treatment. Four tubes were sewn through her breast and in each tube were granules of radioactive iridium. Her hospital bed was behind a lead shield behind which I talked to her when I visited.
Then, for Lynne, it was gone. But I had voraciously read the medical journals at the John Curtin School of Medical Research. Later it was to be the Internet. Volumes of information pointing in one inevitable direction, better left unspoken or communicated selectively — painfully so, for my working life at least was dedicated to the principle that information brought knowledge and knowledge brought wisdom and a more fulfilling life. Not so.
We lived a happy four years, bizarrely cancer-free for Lynne. For her, there was some mistake, or it was gone. She did not have cancer. She was not a cancer patient and she certainly was not a cancer “”sufferer”. We travelled; we walked in the Himalayas; we dived with the seals at Montague Island; we canoed down the Snowy River; we skied fast and fanatically downhill till the lifts stopped then cross-country till all the snow in the high country was gone; and camped in our tent miles from the rest of the world and invited the rest of the world to our house and drank chardonnay in the summer evenings.
The medical checks went from one month to three months to six months. Nothing. They became routine. I stopped going with her. The first one, of course, was traumatic. A lump. A biopsy. Possibly. Possibly not. A second biopsy. Confirmation.
But, this was not Lynne. She was 38.
The surgeon showed us the biopsy report at his Kingston surgery. It was on a green slip. Typed. And the word “”carcinoma” had been corrected with “” green-out”. I didn’t know that they made “”green-out” only “”white-out”. And on that very word that meant so much. Had there been a mistake? Did the typist typing the sentence get nervous at the critical word? No. It was probably of no moment. She had probably typed a dozen sentences that day.
I went with Lynne to the first check-up after the radiation. There was a man in the waiting room whose cancerous larynx had be cut out and he spoke with one of those voice amplifiers that made him sound like a Darlek from Dr Who. Two children in the surgery laughed. And the receptionist spoke to him like a child.
“”Come along, Mr Jones. There now, doctor won’t be long.” It was a horrifying erosion of respect and self-respect, but I was grateful for the lesson. In his late 50s, he probably smoked his larynx away.
ynne had no risk factors. Fit. Squash player. Good diet. No smoking. Early babies breast-fed till they went to kindy.
The initial reaction is cancer equals death.
Maybe Lynne had a few months. This is one extreme. The other is the rubbish about cancer being a word not a death sentence. It usually is a death sentence. The only question is how long you are on death row, or of more importance whether you want death row to be a prison; whether you allow your cancer to imprison you. Lynne never did that.
On the third weekend of October 1992 we planned to climb Mount Twynam on cross-country skis. It had been a splendid skiing year with lots of snow. This time, with a good weather forecast, we were determined to make it to the top. We would do it in a day without heavy camping packs, we thought.
On the Thursday, Lynne had one of her by-now six monthly check-ups. She phoned me at work. The specialist had found a lump in her neck. We had a huddled, grim, teary lunch at Woden and talked of randomness and unfairness. Lynne was determined not to have chemotheraphy. She would not lose her beautiful blonde hair. She had seen the women in turbans and obvious wigs sitting in ominous dark brown leather chairs through the doorway to the chemo room at Woden’s oncology ward.
She would not do it. She became defiant. We would go to Twynam that weekend. It was the first of five spreads of the cancer to other parts of Lynne’s body, each of which she met with some extraordinary act of physical defiance. There may have been a death row; but there was to be no prison.
It was a glorious day. The Main Range cut deep white against an almost purple sky. Not a cloud. It was minus one and you could ski in a T-shirt. Lynne, as usual, was immaculately turned out in bright red Gore-Tex and trendy patterned tights. I was in my daggy white shorts with thermal long johns sticking out and battered Akubra. It took an hour to get from Guthega to the foot bridge across the Snowy River and a further 3ò hours to the top. We looked across the top of Watson’s Crags, down the great blue green of the Geehi Valley and across to the Bogong High Plain slashed with white in the Victorian Alps more than 100km away. How in God’s name can a woman in her early 40s with metastatic breast cancer get to such a place? I skied down from the summit a very fast 500m, turned and waited for Lynne.
SHE DROPPED off the summit and as she raced towards me the shadow of a cloud appeared behind her. But the sun was on her. It lit up her bright red coat and she spread her arms smiling as she glided over the snow. I knew then the shadow would catch her. It turned the snow to ominous grey. It caught her just before she reached me. And I knew then that I would spread her ashes on that mountain, but I swallowed the realism I had learned in the papers at the John Curtin Medical School, and in the most exhilarating ski in our lives we swept in great amateur arcs down to the Snowy River. It took 17 glorious minutes to cover what had taken 3ò hours to come up.
Two days later Lynne was back on the operating table in Woden where a cancerous lymph node was cut from her neck. And the next day she went back to work. In the 8ò years she had less than 10 nights in hospital and fewer sick days than most of her colleagues. Certainly, employers should have no fear of employing someone with cancer. Lynne did not do chemo. She kept her hair. It was 3 and a half years of hormone treatments: Tamoxifen, high-dose Provera, Zoladex, Aminogluthemide. Each slowly collapsed as the cancer spread to Lynne’s spine, the lining of her lungs, again in her spine and again in her neck. There was a ghastly draining of fluid from the lining of Lynne’s lungs and more radiation to her spine. Needles, and tests and blood samples. There were victorious squash finals, 10-km fun runs, journeys to Central Australia and Malaysia, and all the time quiet support from friends, family and colleagues. And not an ounce of self-pity through the whole thing.
Then in April last year a blood test revealed high calcium. A CT scan confirmed the cancer had spread to Lynne’s liver. Until then Lynne could have been the subject of any of those fatuous articles along the lines “”How I conquered cancer and led a happy life.” They follow a pattern of describing events three to five years out. Virtually none describe events six to 10 years out. The theory is that the chemicals would kill the cancer cells and leave the rest of the body alone. Cyclophosthamide, fluoracil and others would attack fast-growing cells or cells at the point of division. But hair and the cells of the lining of the digestive tract also grow quickly and divide frequently.
We have been taught the triumphs of medicine, of vaccines and cures for the great infectious diseases, and we stupidly imagine that the same triumphs can be obtained for cancer, AIDS and heart disease. But cancer is not a attack from without; it is something from within that goes wrong. There are no breakthroughs, just incremental improvements in treatment and in dealing with side-effects, especially nausea. The ever-optimistic pharmaceutical companies report high response rates to their drugs. But the sad fact remains that the death rate for all but a few cancers is no better than two decades ago.
If cancer patients are living longer it is only because medical technology discovers their disease earlier. Inevitably, Lynne had the dreaded chemotheraphy. The nurses in oncology explained with caring patience what would happen half reassuring Lynne as she shook with fear. She feared the treatment more than the disease. And she was right to. Until the last month the treatment was always worse than the disease. That is the trouble with cancer. The cancer cells contain similar genetic material to our own so they can sit in the body immune from attack by the body’s own immune system. Hormone treatment (in the case of breast and prostate cancer) to prevent the cancer feeding or dividing, surgery, radiation and chemicals are the only weapons. You cut, zap or poison and hope you do it to all the cancer cells and none of the body cells, but it never works that way. The treatment, though getting more precise, is never precise enough. Besides, the cancer cells, so like our own, can grow undetected for a long time. Even if you are scanned, it takes a thousand million cancer cells to be big enough for detection and many, many more than that to throw off some physical manifestation like pain or changes in blood chemistry.
Still Lynne did not allow the disease to imprison her. She ordered two wigs to match her hair, paid great attention to her appearance and stayed at work. Her hair was virtually gone in two weeks and people said, “” You’re looking good; I like your new hairdo.” Little did they know. Every three or four weeks depending on Lynne’s white blood cell count she went to Woden where she sat all day while the drip fed the chemicals into her arm. The next day she went back to work. After three months, the cancer in her liver got bigger and the chemical treatment was changed to a drug called Taxol, a synthesised version of an extract from the bark of the rare Pacific yew tree. It worked for a while. We even went to Indonesia in May and skiing in July. But the cancer cells kept dividing, and there were getting exponentially more of them. That’s why people get so shocked at the sudden decline at the end after years of apparent health.
THE REST, I’m afraid, is awful. Lynne’s liver-function tests got more alarming. Her calcium levels shot up. There was never any good medical news in the whole eight years. At best it was neutral. While this was happening the Andrews Bill surfaced and was being debated, mainly outside Parliament. Lynne made it very clear she did not want to live in pain, have unnecessary life-prolonging treatment if it was hopeless, be bed-ridden or have her mind go. But she said she would never have chemotheraphy and she did. She said she would never have morphine and she did. But the trouble with pain control is that you have to have pain in the first place to control it. And the trouble with making statements about future treatment is that you can change your mind when the time comes. But worse, if you don’t change your mind you get to a state where you are no longer in a condition to restate your view or do anything about it. You are at the mercy of your carers. It would be so nice to have the childish, religious certainty of the Lyons Forum MPs.
In November, Lynne gave up work and active treatment. The oncologist said go home, gather your loved ones around you. There is no point in more liver-function tests. We know what the result will be.
Even then, Lynne refused to be imprisoned by her disease. On December 30 I was clearing my desk at home and I came across a brochure about flights to Antarctica. They were booked out in January and by February who knows. But there were seats the next day on the New Year’s Eve flight. It was madness, but we went. They were Lynne’s last two good days. When the article I wrote about it was published 10 days later she couldn’t read it. The cancer had spread to her brain, but there was no point in having a CT scan to prove it.
By now she was on morphine tablets. Her appetite went. We tried everything. But Lynne slowly starved. Her legs shrank. Her body was emaciated and the cancer in her liver pushed her belly out. It was like a little piece of Ethiopia or some other Third World hell-hole in our house in suburban Canberra. On the Friday after I carried her to the bathroom she sat on the toilet and grunted: “”I’m in hell. I’m in hell. I want to die.” When people told Lynne she was very brave, she said, “”No I’m not; I have no choice.” But she was brave and she did have choices, at least until the last two weeks when the one choice she wanted was not available.
If some of those MPs who voted last week had been there, they might have thought differently. But the earlier choices were strong ones: to live as if the disease were not there until it was impossible to do otherwise. It was best for her and her loved ones. Obsession with it or finding out too much about it is too destructive and self-defeating. And she chose to die at home. Lynne’s GP was amazing. He threw himself into her pain relief. At first it was morphine tablets and then a syringe driver to automatically and continuously inject it. But it came at the cost of lucidity. She confused water and milk and pills and wedding rings. Communication became almost impossible. She was childlike, but I remembered the man without a larynx.
THE PALLIATIVE care nurses were always there when needed. How do they cope without them in the bush? And without Lynne’s parents, sister, children and friends it would have been virtually impossible for her to stay at home where she wanted to be.
Alas, for Lynne there was no dying “”peacefully after a long illness” as the euphemisms in the death notices put it. On the morning of Sunday January 19 Lynne half woke up and I propped her against the pillow. By now, because of the morphine, her breathing was heavy and slow. She was struggling. Her head was nodding and her eyes rolled occasionally. I just knew that it was now, very soon, that one of these deep breaths would be her last. But there was another, and another, and another. I couldn’t tell which one it would be. Would it be this one or the next one, or the next one? I said, “”It’s okay, my love, you can go now.” There were two more breaths. And then the light in our lives went out.
Postscript: We scattered Lynne’s ashes on Twynam on the Australia Day weekend and we put a bronze plaque there at Easter. Next Australia Day weekend I hope to arrange a walkathon to Twynam (it is a moderate 6km walk in summer) to raise money for breast cancer research.