Never Say Die

Prologue

LIFE-CHANGING EXPERIENCES, whether driven by fate or by chance, can take on myriad forms. They may exert their influence on our lives as a gentle coercive force or a dominating, even catastrophic, burst of energy. Whether it is the birth of triplets, a huge lottery win, an accident resulting in critical injury, or a journey that leads to an intellectual or spiritual awakening, things are never the same afterwards.

I have had several experiences of this kind, but the most recent and profound came on the afternoon of Saturday, 25 November 2006, when it was found that I had a highly malignant brain tumour.

The first warning that a mass of mutant brain cells was proliferating in my head like a spider’s web came three days earlier, on Wednesday morning. I awoke with a headache in the right frontal region and although it was moderately intense, I gave little thought to its possible cause, took a couple of paracetamol tablets and readied myself for the drive to Royal Prince Alfred Hospital for morning rounds.

On the previous day I had operated all day at RPA, as I had done on Tuesdays for nearly twenty years, but the operating list had been comfortably light—mainly benign thyroid tumours. Over the past three years or so, particularly since I had been appointed director of the Sydney Cancer Centre, I had increasingly needed to divide my Tuesdays between the operating theatre and my office in the Centre (also based at RPA), relying on the team to keep the list moving forward efficiently and safely when I was occupied with administrative matters. At one point on that particular Tuesday I had scrubbed and entered the operating room. One of the clinical fellows, a very competent English ear, nose and throat surgeon, was removing a large thyroid gland but I was confused about exactly what was being done and why. This uncertainty caused me no special alarm at the time, but I did leave the operating room and admonish myself that I was overtired and needed to rest. I made my way back to the Cancer Centre to finish more paperwork and then returned to the operating theatre floor at around six o’clock for our customary team gathering.

This little ritual had been established about sixteen years earlier with my friend and colleague Ian Douglas, our anaesthetist and a model of understated competence and quiet equanimity. The gathering involved sharing a couple of bottles of red wine, sometimes with cheese or other food, for an hour or more at the end of the day with the anaesthetics team and the residents, registrars and fellows as well as the medical students who were attached to the head and neck surgery service for periods ranging from ten weeks to one year.

During this time we would talk as equals about the day’s events or about books, films, wine and anything else non-medical that presented itself. People may sniff cynically at the word ‘equals’ but I had worked hard over the years to develop a culture of mutual respect and harmony in the unit, based on the principle that we were all simply at different stages of our medical careers (a critically important concept I learned from a wise heart specialist at RPA named Phil Harris) and therefore had different roles and responsibilities. These little bonding sessions created an opportunity for us to become better acquainted with the junior members of the team and to learn about their lives and ambitions, and allowed the older ones to dispel the frustrations that may have developed during our ten hours together. Sometimes, for example, they were not able to do the operations they had hoped to carry out, or perhaps I needed to interrupt or take over from one of them to deal with a technical difficulty or push things along.

When we adjourned for home, everyone was cheerful and felt they’d had a good day. Because of this inclusive policy, or so I believed, the head and neck term was very popular among students and junior staff. The two fellowship positions we offered were also keenly sought after by young overseas surgeons. The program gave individuals hoping to carve out a career in head and neck surgery the opportunity to work in a busy, productive unit, learn new skills and carry out research, while earning a reasonable salary and living in one of the best cities in the world.

By the time I got to Prince Alfred on Wednesday morning my headache had subsided. I did, however, show some confusion as we reviewed Tuesday’s patients and stopped at their bedsides to check their post-operative status. I couldn’t recall who was who or what procedure each had had. The team noticed it too and we joked briefly about this uncharacteristic absentmindedness before I went off to consult for the rest of the day in my rooms at St George Private Hospital. I felt profoundly fatigued all afternoon but managed to get through this consulting session without any difficulties.

The next day I woke again with a bad frontal headache, but it settled after a couple of tablets and I was at St George Private by 7.30 a.m. to carry out my private operating list, which usually finished around 8 or 9 p.m. Things went smoothly, without confusion and without technical difficulties, but I continued to have the same feeling of overwhelming tiredness. My good friend Donn Ledwidge had acted as anaesthetist for this list for many years, mixing clinical skill with cheerful buffoonery. Fortunately Donn’s efficiency and humour carried us through the session to an early finish.

By Friday, when I usually spent a very long day in the Cancer Centre attending, and mostly chairing, back-to-back meetings, making calls and talking to anyone from the Area CEO to one of the cleaners, a student looking for a research project or one of our fundraisers, the headache was persistent and more intense. Jenny, my personal assistant, found herself dispensing repeated doses of pain tablets and I was dreading the thought of attending the Cancer Institute’s Clinical Services Advisory Committee meeting, scheduled for four o’clock that afternoon. These meetings tended to be frustratingly unproductive and this one, poorly attended as if to emphasise the point, was no different. Beset with increasing lethargy and a constant background thud in my head, I struggled through the meeting, drove home and went to bed early.

Things deteriorated on Saturday morning. Again, I awoke with the same headache but now it was more severe. I managed to do my rounds at St George Private, reviewing and discharging Thursday’s patients, but the drive home afterwards proved an unexpected and almost insurmountable challenge when I was overcome by escalating exhaustion and nausea and had to stop by the roadside a couple of times to vomit. By the time I reached home the combination of headache, nausea and exhaustion had provoked a sense of painful desperation as the gravity of my situation started to become apparent. Clearly something was dreadfully wrong, but it still did not occur to me that the cause of this massive change in my usually robust health was a brain tumour, least of all a malignant glioma, a cancer with a reputation for rapid, relentless and almost inevitable lethality.

When Gail greeted me she very quickly saw that I was much worse than when I had left the house earlier in the morning. We talked briefly about whether or not I might have meningococcal meningitis, a horrible illness which had killed a young cardiac surgeon at RPA some years earlier. Importantly, we agreed that there was no time for speculation, so she loaded me into the car and we headed for the hospital.

Twenty minutes later, with what must have been a terrifying sense of dread and foreboding for her, Gail drove me into the grounds of RPA, the institution which had been the focal point of my professional life and where our love affair, friendship and life together had started over thirty years before.

I arrived at the emergency department, so debilitated by this time that I would have apathetically submitted to any test or intervention. A canula was inserted into a vein in my arm, blood was taken for analysis and people fussed around me. I was now on a treadmill of investigations, treatment and monitoring, and I would stay there for the rest of the year.

An urgent CT scan was carried out and soon after, as I lay on a trolley in an unusually quiet emergency department, two young female doctors approached us. One, the emergency physician, was clearly saddened by the information she had to share and the strain of this burden showed on her young face.

‘Professor, I’m sorry but the scan shows something,’ she said.

‘Is it a neoplasm?’ I asked, calm, unmoved, ready for whatever would come next, ready for the worst.

‘Yes,’ she replied in a soft voice that was really saying, ‘I wish I didn’t have to tell you this.’

‘What’s a neoplasm?’ Gail asked. ‘A tumour,’ I responded. ‘Can it be treated?’ she asked, her face pale, sad, questioning.

The other doctor was the neurosurgery registrar, a pretty young woman with Indian features who had apparently just passed her final exams. She spoke briefly to Gail as I measured the implications of what I had been told.

‘Yes, it can be treated, but it’s incurable,’ came her reply.

Gail strained to take in this information, make sense of it, maintain her composure and find strength in a whirlpool of cascading emotions. I took her hand and held it tight, feeling calm, not at all fearful, relieved if anything that we now knew what had been happening.

‘Don’t worry, darling. I’ll be alright,’ I reassured her, a mountaineer tumbling into a bottomless crevasse and calling back with unfounded confidence to his lifelong climbing partner.

That my situation represented the ultimate of role reversals was not lost on me for a moment. By a totally unexpected twist of fate, viewed by my family, friends, colleagues and people I didn’t even know as the cruellest of ironies, I was now on the receiving end of devastating news, without any time for preparation, and with the prognosis delivered like a hammer blow. I had experienced this scenario a hundred times before but I had been the deliverer of the news, not the recipient. To be told my prognosis so bluntly, with no hope offered, brought home to me as nothing else could the importance of delivering such news well.

Breaking bad news is never easy and I had always felt very strongly that it must be done with gentleness, kindness and a sense of hope—that all was not lost and that much could, and would, be done. There are training courses and written guidelines available which are aimed at teaching clinicians of all kinds how to break bad news. Most importantly, people in this, the most vulnerable of predicaments, should not have their hope taken away. They need to be embraced by a sympathetic, supportive doctor or team who can demonstrate their willingness and ability to put into action a plan of investigations and treatment to get matters sorted out and, if a cure is at all possible, to pursue it with unremitting energy. Patients with poor-prognosis diseases will never do well if they are treated by individuals or teams who nihilistically believe they have no chance of success.

‘Would you like me to get in touch with anyone?’ the emergency doctor inquired.

‘Yes,’ I responded, ‘if Michael Besser is around, I’d like you to give him a call.’

I had known Besser for about twenty years as a friend and colleague and I respected him enormously. His reputation as a neurosurgeon was outstanding. We had done quite a lot of running together with other friends some years back, competing in a couple of half marathons, but we were not especially close.

Michael arrived within about twenty minutes, compact, dapper, professional. Reluctantly, quietly and with obvious regret in his tone he said, ‘It’s not good, Chris. It’s probably a glioblastoma. The survival time is six to twelve months, but we’ll get you into hospital now and start you on steroids. That will make you feel a lot better—there’s a massive amount of cerebral oedema.’

He was referring to the build-up of fluid in and around my brain as a result of the tumour: the same reactive outpouring of tissue fluid that accompanies any injury or infection, whether it is a sprained ankle or appendicitis or pneumonia. It was this slow accumulation of fluid and the build-up of pressure inside my skull that had caused the lethargy, headache and nausea, climaxing in the state of near collapse I had reached by the time we arrived at the emergency room. Besser commented that I probably would have been unconscious in another forty-eight hours.

Gail and I stayed there in the emergency department as preparations were made for my admission to hospital. She phoned home to let our three children know what was happening and I took a few moments to fathom my plight.

The scope of my world had suddenly contracted but instead of it becoming more keenly focused than ever before, it had turned blurry and soft in the centre. I was fifty-four years old, recognised as one of the leaders in my field of work, with a wonderful family, a dozen other jobs and endless unfinished business, now lying with a death sentence over my head in a hospital only a few kilometres from where I had grown up. Had I really not come very far? Would the circle close prematurely? I was not afraid, but I did not feel ready.

CHAPTER 1

Teachers and farmers

I GREW UP HAPPILY IN SYDNEY, in the small sleepy western suburb of Regents Park, a little place of monumental ordinariness and one of several small villages located inconspicuously on the railway line between Lidcombe and Bankstown. Our modest Housing Commission house, built of fibro and tile and my parents’ first home, was comfortably ensconced in a quiet street which still had a few vacant blocks of land and only a few trees and which epitomised the safe, inward-looking complacency of lower middle-class suburbia in the 1950s. Over a period of years new houses were built on the nearby vacant lots and number fifteen Berry Street underwent progressive enhancements, including the erection of a carport (remarkably upright and professional looking given that it was built by Dad, my brother and me) in the front, a large garden shed, and eventually a first floor addition, comprising extra bedrooms, a bathroom and living space, which was completed around the time that my brother, sister and I left home.

My mother was pregnant with my older brother Michael when she married my father. She was the second of four children born to Richard and Lurline Healey, who were both primary school teachers. The Healeys met at teacher’s college in Sydney and had their first posting in Broken Hill. Mum was born in Armidale and her young parents carried on a peripatetic existence, making their way in stepwise fashion to the city, as my grandfather occupied successive headmaster positions at primary schools in Cobar, Trangie, St Marys and finally Ashfield. Mum was bright, outgoing, very good at sport and her studies, and when she was about sixteen was made school captain of Our Lady of Mercy College, Parramatta, situated on the other side of Victoria Road from the Marist Brothers school that Michael and I would later attend. Good at singing, tennis and French and a voracious reader, she matriculated ahead of her age group and went to Sydney University to study arts.

My father was born in Gunnedah, the youngest of four and, by all accounts, a robust and cheerfully undisciplined farm boy who loved riding and rugby league and who was invited to leave most of the schools he attended because of repeated truancy. His parents—Frank, a soldier and farmer, and Dorothy, a prim schoolteacher—were, like the Healeys, the very definition of Democratic Labor Party voters: devoutly Catholic, upright and conservative. They lived modestly on a succession of farms between Tamworth and Cessnock.

Dad’s formal education finished when he was fifteen years old. A year later he joined the navy with the singular intention of killing Japanese to avenge the death of his hero, his beloved older brother Leo, who was killed in Singapore. Dad’s hatred of the Japanese remained strong and barely beneath the surface until its eventual abatement when he was well over seventy.

After the war he joined the merchant navy but then went on to a succession of other jobs and attempts at establishing a career. One of these enterprises involved starting up a little building company, Colbourn, Crossley and O’Brien, with two larrikin friends who were apparently equally undisciplined and similarly blessed with a talent for creative incompetence. From all reports, the trio specialised in constructing fences that fell over the day after their erection, extensions that took forever to complete, and lengthy lunches in Paddington pubs. One such break from their muddled and shonky productivity followed a morning spent taking the roof off a nearby house with the plan of putting on a temporary cover late in the afternoon and then returning the next day to start the retiling job. As the three settled in for a liquid lunch, the weather took a dramatic turn for the worse and rain began to bucket down. The roofless house started to fill up like a swimming pool.

The chaos and destruction that followed the thunderstorm was enough to drive Colbourn, Crossley and O’Brien out of the building business. Dad joined the army, still without a skill, but he was optimistic, handsome, imaginative and prepared to work hard. In due course he was promoted to the rank of warrant officer, in command of a tank. Proud of his achievements in the armed forces, he would subsequently anchor all descriptions of his working history around this period.

Where my parents met is unclear, but Dad used to call on Mum when she was still living with her parents in a grand Victorian residence reserved for the headmaster of Ashfield Public School on Liverpool Road, Ashfield. By this time she had left university without finishing her arts degree and started at teachers college. I have at home a beautiful black and white photograph, taken by a street photographer near the GPO in Sydney early in Mum and Dad’s courtship, showing the young couple confidently striding up Martin Place—a pretty young Maureen Healey with her strapping beau, Kevin.

Mum’s pregnancy and Dad’s modest background did not impress her parents, who remained resentful of and barely civil to my father for as long as I can remember. They were married in a side chapel of St Mary’s Cathedral in Sydney without parents or family in attendance and immediately moved into a broom cupboard under the stairs in Juniper Hall, an elegant colonial building that still stands in Oxford Street, Paddington. The space must have been larger than a simple cupboard since the single room provided enough space for sleeping, dining and, according to my mother’s proud descriptions, the preparation of a three-course meal on a small stove which burned methylated spirits.

Their Paddington sojourn was mercifully brief and was followed by a year or so in temporary housing in St Marys. By the time I was born, a war service loan had allowed them to establish themselves in Regents Park and I was brought home from the Paddington Women’s Hospital to the bedroom I would share with my brother for the next twenty years.

Berry Street was populated by an odd assortment of families that seemed mostly older and weirder than ours. Across the road lived the Smiths, whose only son Billy had an abnormally large head, thick glasses that magnified his impossibly crossed eyes and a maniacal grin which showed off a mouth full of big green and yellow teeth separated by large irregular gaps. In addition it was generally agreed that Billy was a bit mental. A couple of doors up lived the Piggotts, a mean and unfriendly couple whose fastidiously kept fibro house represented a definite ‘no go’ zone. Mr Piggott was a bad-tempered and obsessive crank who wore his trousers pulled over a developing paunch nearly up to his nipples (in truth, I don’t want to think about Piggott’s nipples). He would spend hours manicuring his lawn and garden, probably trimming the edges with the same scissors he used on his toenails (I want to think about his toenails even less) and dusting and polishing the brass handles and fittings on his front-yard tap, his absurdly ornate letterbox and other bits of decorative paraphernalia he had hanging on his front porch.

During street cricket, baseball, tennis and other games we played on the road, any ball that was hit, kicked or thrown into the Piggott’s front yard was confiscated and never returned. When occasionally we found courage enough to jump the front fence to retrieve a ball or any other possession that found its way onto Mr Piggott’s property, we risked a barrage of abuse accompanied by furious window banging from their front room and a noisy and potentially painful attack from Treasure, a spoilt and savage little fox terrier that patrolled the premises.

With these and a few other bewildering but otherwise benign exceptions, Berry Street and the surrounding quiet roads were safe and friendly and the O’Brien kids—Mike, Chris and younger sister Carmel—were known, liked and welcome in most homes. Our neighbours kept mostly to themselves though and, despite a general sense of goodwill and cooperation, the thought of initiating or participating in a communal activity such as a street party would have been as foreign as flying to Mars.

I weighed an emphatic, even embarrassing, twelve pounds when I was born. How my mother survived my delivery boggles the mind. Apparently as a baby I proved to be a contented, cooperative bundle of flesh and fat, ate every bit of food offered to me, slept soundly, smiled continuously, performed all bodily functions on command and comfortably achieved all developmental and growth milestones. Michael, also a big baby though not at the gargantuan end of the scale, was by comparison an unstoppable livewire who ran Mum ragged from morning till night—swinging from the clothesline, disappearing down the road on his tricycle, attacking me, a relatively large and immobile target, with a range of heavy and sharp objects and generally causing mayhem. There was no medical diagnosis for his behaviour at that time and none was thought necessary. Gifted and talented children had not yet been invented either, so Michael was regarded as being either a very busy boy or a very naughty boy or something in between, depending on the phase of the moon and the outlandishness of his antics. Carmel, two years younger than me and with a similarly calm disposition, seemed to be able to participate in all our high jinks with impunity, rarely flouting the rules, causing problems or attracting much in the way of punishment. She was generally far better behaved anyway; but Mum and Dad were clearly averse to including her in ‘beltings’ and any other physical punishment regularly dished out to Michael and me.

When we were a little older, on a couple of occasions during school holidays Michael and I were sent to visit our great aunt Molly, Grandma O’Brien’s sister-in-law, who was the matron and domestic supervisor at a Catholic boarding school and agricultural college for boys in Goulburn called Inveralochy. This was a large and rambling farming property run by Christian Brothers, and we were thrilled to be visiting a real farm. We were absolutely enthralled by every bit of it—the animals, the tractors and other equipment, the various outbuildings, the great open paddocks, and especially being free to roam virtually wherever we wished because the brothers and boys were all away on winter holidays, leaving only a skeleton religious contingent behind. A kindly old brother or one of the farm hands would drive us around the property on an old tractor and dear old Molly would spoil us with wonderful meals and delicious cakes for afternoon tea.

As it turned out we only had two holidays at Inveralochy, the second of which was cut short when Michael, presumably in an attempt to raise the tempo (and temperature) of the otherwise sleepy pace of life on the farm, set fire to a haystack that was being stored in a small brick side building. After the fire brigade had extinguished the blaze the two young O’Briens were bundled back to Sydney in disgrace and not invited back. Michael demonstrated no other tendencies towards pyromania subsequently but our names were well and truly mud in Goulburn for a while.

Michael and I also spent endless hours together exploring and wreaking havoc through our own quiet neighbourhood: raiding building sites, constructing cubby houses and elaborate fortresses, engaging in battles with friends and neighbours using every conceivable type of ammunition—rocks, mud and clay balls, penny and tuppenny bungers, rolled up newspapers (sometimes containing a hidden piece of wood), bamboo bows, arrows and spears and decomposing fruit of every variety. Injuries were uncommon and minor because we all wore old army helmets, bought or stolen from one of the war surplus stores that seemed to abound at that time, and because of our preference for wars of attrition rather than