On Borrowed Time Page 2

  My physical condition was pitiful – voiceless; a feeding tube in my nose; another tube, affectionately called by doctors and nurses a “trachy tube” (short for tracheostomy), inserted permanently in the stoma to help it keep its shape; a catheter for pissing into; matted hair, which could not be washed lest water enter the stoma; stubble gradually turning into a beard, as my skin was too sensitive for shaving; a coated tongue, which felt like a swamp; my left arm in a cast to protect the area from which skin had been removed for grafting; grotesque, unsightly swelling around my stitched together neck, which I remained unable to look at in a mirror for several days; so many fresh scars in so many often unexpected parts of my body that I joked that I now resembled a veteran of the American Civil War; bowels occasionally blocked and then wildly out of control; and a mild case of pneumonia which the dry-witted respiratory physician who visited me regularly thought ranked no higher than fifteen in the list of my bodily ailments.

  And yet, my spirits remained high. Opiates were undoubtedly one reason; among my notes I have found that shortly after my second operation I wrote: “Morphine is my friend”. But readers who have persisted so far will know the infinitely more important explanation. Anne was with me for several hours almost every day and in spirit always. So, too, although less intensely, were close family and friends. I was never less alone in my life than now. Had I been alone, God only knows what would have become of me.

  To regain even a semblance of fitness, not my strongest suit even when well, the only possible exercise was to walk “laps” of the ward, which comprised a perfect square. I began with one lap but graduated to six a day and then, rather proudly, twelve. At first I was accompanied by a nurse or Anne, who, as we shuffled along, pushed an upright trolley to which my various tubes were attached. The number of tubes I needed reduced over time. Eventually I walked by myself unencumbered, a free man. On one occasion, a bloody patch suddenly appeared on my pure white hospital frock. The chest wound had oozed. It was easily repaired. In my hospital room the trachy tube had once mysteriously popped out. For this reason, as I walked by myself around the ward, I held onto it tightly, in fear that if it popped out again unnoticed while I was doing my laps a wardwide search party would have to be mounted. Trachy tubes are custom built; one size definitely does not fit all. On another occasion a physician accidentally knocked out my nose tube. The new one was stitched in. In my record of conversations, the plaintive cry: “Please be careful with the nose tube”, occurs at least a dozen times. The more senior surgeon paid a visit early one morning with his two-year-old son. One look at me – a bearded, bed-ridden man with a tube in his nose – and the boy burst into tears and ran to the arms of his father.

  One day, on a walk through the ward, a new thought struck me with some force. Since childhood I had hated the look and the smell of hospitals, where my mother spent periods of time because of her multiple sclerosis. Since then I had scurried along their corridors, noticing as little as possible. Because of the operation, I now smelt nothing. And, as I did my laps, I found that I no longer averted my gaze from the people sitting disconsolately in their rooms staring at television screens, or hobbling around the ward in dressing gowns and slippers, or being wheeled on beds, their faces often blank with fear or pain. Simply as a matter of common courtesy, I nodded and smiled as I passed fellow patients, and also the growing number of hospital staff I had come to know. These people were no doubt part of a modern bureaucratic organisation based upon a careful division of tasks and a hierarchy – surgeons, physicians, administrators, nurses, nursing aides, cleaners, food deliverers and so on. Many worked with the most sophisticated contemporary medical equipment, which seemed to be strewn almost carelessly along the corridors of the ward. Yet these people’s working lives were dedicated to an ancient impulse which gave meaning to the idea of a common humanity, providing aid and comfort to the afflicted. And they were required in their carefully regulated work to fulfil, on the community’s behalf, what compassion, the finest of all the moral virtues, demanded. Hospitals were for me quite suddenly no longer places of dread to be avoided but secular cathedrals of the humanist spirit, worthy of celebration.

  I did not speak a word for six weeks. But I was never silent, because of pens and a succession of A4 pads, most of which I still possess. Anne was of course my most important conversationalist. In my scrawls, she told me, she could still hear my voice. I also “conversed” eagerly with new acquaintances – the surgeons, physicians and nurses. As she sat on my bed, a nurse from central Queensland told me about her idyllic country childhood, and I told her about Cottlesbridge, where our two daughters had grown up and where we now lived with a menagerie of four cats, two horses and two dogs. Another was torn between a career in nursing or public relations. I told her that I believed nursing was “1000 per cent” more important. Yet another, an inner-city Carlton-Balmain type, came up with three practical suggestions during conversation – a spoon to scrape away some of the swamp that had settled on my tongue; dry shampoo for my greasy, knotted hair; a ribbon attaching pen to pad to avoid unnecessary frustration. She smiled wryly when I called these ideas “revolutions”. One day a big bunch of flowers from Greenpeace and David Ritter arrived. The nurse who brought them had once worked for a conservation group. We discussed mutual acquaintances, one of the staples of pleasurable conversation. When the plastic surgeon returned from the week he spent in Burma shortly after my second operation, I told him about a friend, Martin Krygier, who was involved in a rule-of-law project there. We agreed that bringing the rule of law to Burma posed a far greater challenge than streamlining the delivery of surgery. I spoke to others about his altruism while he was away. The respiratory physician, in the characteristically Australian way, joked that he was probably holidaying in Queensland. These conversations would once have seemed inconsequential. They remain fixed in memory because of the circumstance in which they occurred.

  Before eating or drinking after a laryngectomy, the patient is required to pass what is known as the swallow test. The test involves drinking, while standing, a mildly unpleasant liquorice-tasting liquid, which makes its way down the reconstructed throat as an X-ray is taken. If there are any leaks they can be seen. In the fortnight following the second operation I was twice transported to the Epworth’s imaging room. I failed the first test. The second test took place after I’d been reading the Australian. I was so angry about the campaign the paper was conducting against Gillian Triggs, the president of the Human Rights Commission, that I composed an opinion piece in my head, later published on the Monthly website, while waiting in a wheelchair by the imaging room. My anger was unconnected to the small leak the second swallow test detected.

  We were now in mid-December. Christmas was approaching. Recognising there was no point staying in hospital, my plastic surgeon – who told me his mentor believed four weeks were needed for the post-laryngectomy throat to heal – suggested that I go home before returning for a third test scheduled for early January. This caused a little unease at the hospital. It was unusual for anyone to return home with a tube still in the nose.

  I believe that the animals – especially the male Burmese cat – were pleased to see me. I was certainly pleased to see them. And I was happy beyond measure to be home. Accompanied by boxes of liquid feed (I refuse to call it food) and with a feeding pump and the dozen or so drugs I needed, Anne and I celebrated Christmas with Lucy, our younger daughter, and brought in the new year by ourselves. On New Year’s Eve we watched James Stewart in Frank Capra’s It’s a Wonderful Life (the film was carefully chosen) and then, to the distant crackle of fireworks, listened to Kathleen Ferrier singing Gluck’s “What Is Life To Me Without Thee?” with tears – of relief, of trepidation, of sadness, of joy, of love – welling in our eyes.

  We were very tense before the third swallow test. But I passed. A short stay in the hospital was needed to check how well I could eat and drink. This time I was in a ward for four, with beds separated only by curtains. On one
side was an old gentleman whose political opinions seemed to be shaped by Andrew Bolt and the Herald Sun. Across the way was an elderly Filipino, who had been taken ill while visiting his son and daughter-in-law. He moaned throughout the day and into the night in what appeared to be mild pain – as soon as he spoke to his son or the doctors he was cheerful. I have never more valued the politically incorrect British virtue known as the stiff upper lip. After the nose tube was removed – hallelujah! – drinking was easy, eating less so. Foolishly I chose broth. The hospital broth was intrinsically distasteful but it had, I surmised, only become truly disgusting when it interacted with the residue of the feeds that had been pumped into me over the past six weeks. Two spoonfuls and I was finished. I thought I would never be able to take broth again. I now assessed the system and the possibility of escape with a prisoner’s cunning. I was required to fill out forms specifying the volume of what I had eaten and drunk. I doubted that anyone was checking. I submitted falsified forms, exaggerating considerably but still within what I calculated were the bounds of plausibility, how much food and drink I could digest. The professor of what? was behaving like an errant child. For first time since my larynx was removed, I was desperate to get out of the hospital. After two days, Anne and I drove home, preparing for our new life.

  I still did not speak. A few days later we drove back to the Epworth. We were greeted in a consulting suite by three surgeons – the two we had seen two months earlier and a female colleague who was involved in the second operation – one of the physicians, the one who had accidentally knocked out the nose tube, and the speech therapist, whom we had grown to admire greatly, whose concern for my wellbeing was obviously genuine. The assembled group peered closely at my neck. Anne and I had to suppress laughter. The consensus was that the stoma was “beautiful”. Thoughts about “the eye of the beholder” came to mind. I was asked to place a thumb over the site of beauty and say “aargh”. The aargh emerged. I was asked to count to ten. Once more, I succeeded.

  To understand what follows, my state of mind at that moment must be understood. I firmly believed that it would take weeks or months of effort, under the guidance of a speech therapist, before I would be able to speak. There was even a slim possibility that I would never speak again. There was, however, a story that I was determined to tell the surgeons. The story concerned an episode of Australian Story I had seen on television in the ward, about an attractive young woman with a throat cancer like mine. She had refused to undergo a laryngectomy. Her father had searched the internet for an alternative cure and wanted the government to pay for a drug that had been successful with a different cancer. Now she was dying. This story revealed that by convincing us to proceed with the laryngectomy, by excising hope of an alternative, with what Anne had jokingly described as “surgical precision”, the surgeons had saved my life. I urgently wanted to speak so I could express the emotion I felt most powerfully at this time: gratitude. As I began, the words, the sentences, the paragraphs kept coming. The paragon of manual ineptitude had mastered breath control effortlessly. Although I was speaking in a whisper, the voice was in tone and register unmistakably mine. Anne wept quietly. When I had finished the story, there was a silence. And then the more senior surgeon said, with great sadness, “She is our patient.”

  My new life as a laryngectomite now began to take shape. A section of the table in my study was turned over to bottles and packets of medicines. One bottle contained oxycodone. For the only time in my life, I grasped through the personal experience of mild euphoria why the world faces a drug-taking epidemic. When the bottle emptied I knew I shouldn’t try to replace it. There were three important new tasks: testing the prosthesis for leaks, by drinking and then examining the stoma; from time to time replacing the air filter when it was blocked by dry phlegm, or the adhesive base plate when the seal broke and speaking turned to hissing; cleaning the stoma and the prosthesis at least twice daily with a torch, tweezers and two twirling brushes. At first Anne did most of the cleaning. She believed her acceptance of my new body would help. We joked that we had found a new definition of true love – cleaning a partner’s stoma. Showering was made possible by a nifty plastic device inserted in the base plate. Eating advanced from milkshakes, pureed foods and scrambled eggs to pasta and other soft foods, and then to the old diet of meat, bread, potatoes and vegetables. I discovered that when I ate I could barely talk. The food wended its way slowly down the reconstructed throat to the stomach by force of gravity. Drinking lots of water during meals helped. But if I talked while drinking I gurgled. My new condition had, however, certain undeniable benefits. Because of the drugs, I slept better than for decades. Anne reported that I no longer snored.

  After the final appointment at the Epworth where I spoke, we thought that, apart from regular check-ups, we were at least temporarily finished with hospitals. Not so. One morning a few weeks after going home, I discovered that the silicon prosthesis had disappeared. This was no minor matter. There were only three places it might have gone or might still go – the floor, the stomach or the lungs. The floor and even the stomach were unproblematic. If, however, it reached the lungs I might not be able to breathe. Anne tried valiantly but in vain to insert the far too flexible rubber catheter we had been provided with for such an emergency. Overnight, however, the hole which held the prosthesis had closed over. She called an ambulance. The paramedics arrived – to the delight of our two corgis, who adore all visitors – but they knew less than we what was to be done. Anne called one of the speech therapists in the rehabilitation rooms at the Epworth, who advised us to get to emergency as quickly as possible. It took four days and three hospital visits for a prosthesis to be inserted. My new rehab speech therapist battled nobly until he eventually succeeded. On the second visit, I needed to go from the rehab rooms to the surgeons’ consulting suite so that some so-called proud flesh around the prosthesis hole could be burned off. I was accompanied by the other rehab speech therapist, to whom Anne had spoken on the phone. She was heavily pregnant. As we were walking I coughed or sneezed – it is hard to say which – and a glob of phlegm landed on the linoleum floor. With delicacy, grace and good cheer, my companion bent and wiped it up. It was at that moment that I decided to write this essay. I thought then that it would be called either “Gratitude” or “The Kindness of Strangers”.

  It would please no one more than me if this essay could have a modestly happy ending. That would be untruthful. During my times in hospital, and even for some weeks after, I experienced no pain. Re-reading my notes recently I found that in the last conversations with Anne before I could speak, I told her first that the skin around my neck felt “numb” and a little later that it felt “tight”. Eventually the tightness turned into pain. Humour can make almost anything more bearable. I christened the force that gripped me by the throat the Cottlesbridge Strangler. I asked my plastic surgeon and the original ear, nose and throat specialist for advice. Both thought an anti-depressant might help. It didn’t. For some time we believed that the pain was caused by lymphoedemia – the accumulation of fluids after the removal of lymph glands. I travelled across Melbourne on several occasions – two hours each way – to the only physiotherapist in the entire city who dealt with lymphoedemia of the neck. Her treatment – thrice daily exercises, gentle massages and a comical Joel Selwood-style head bandage* – successfully cleared the liquid. The pain, however, persisted. A pain specialist joined the ever-expanding circle of surgeons, specialist physicians, general practitioners and physiotherapists I had visited over the past months. Thus began a search for the right cocktail of drugs that would render intolerable pain tolerable without turning me into an addict, or make me, as the kind specialist would prefer me to say, dependent.

  In one of the routine appointments, the fine young surgeon who had conducted the original operation told me in his quiet way that I should not expect the pain to go away, ever. With previously irradiated skin, what I was experiencing was not uncommon. During my most recent appointment
, almost as an afterthought, he added that if the cancer returned there was nothing that surgery could do to help me. I now had the title for this essay.

  *

  My favourite radio program is the ABC’s The Coodabeen Champions, two hours on Saturday mornings of wonderful improvised humour about Australian football. Towards the end of each program the regulars are asked, “What have you learned today?” and are required to answer succinctly. It’s a good question. I will try to answer, in similar fashion, what I have learned in the ten months since discovering that throat cancer had returned.

  I have learned that I am quite a stoical person, who can abide even very unpleasant bodily conditions short of intolerable pain. I have learned that dignity is a quality of the spirit that can be maintained even in the most compromising or comical situations, as the body gives way. I have learned that with moral effort – that idea again – even a person as naturally proud as I am can overcome embarrassment over conspicuous physical disability with friends, acquaintances and strangers. Having lived a professional life part of which relied on speech – lecturing, tutoring, speaking at writers’ festivals, launching books, appearing on radio and occasionally television – I have learned that with a poor quality or unpleasing voice one is expected as a matter of course to vacate the public stage. I intend to challenge that expectation. Perhaps I was lucky, and I realise I benefited from private health insurance, but I have learned that in Australia hospitals are remarkable institutions and the people working in them almost invariably capable and kind. Shortly before my diagnosis, a friend took his own life for fear, according to his suicide note, that in old age he might experience something akin to what I was about to go through. I have learned that I very much want to live, for a hundred reasons, and that I will one day share with George Orwell “a violent resentment at having to leave this world which, when all is said and done, suits me so well”. I have learned that there is almost nothing more precious in this world than the love of family and friends. I will never forget the heartfelt emails from Kate and Lucy or the exquisite apricot roses sent by Morry and Anna Schwartz. And above all other things I have learned what the marriage of two minds and bodies can mean, and that the truest and deepest words in the English language come from the ancient marriage vow: “to have and to hold … for better, for worse, for richer, for poorer, in sickness and in health, until death do us part”.