Mum was inside, sitting on a kitchen stool near the open French windows. She wore no make-up, light blue shorts and a white T-shirt. She was on the phone to somebody, talking about the treatment procedures and plans. Her previous moribund, fatalistic attitude had faded. She was speaking about the next steps — radiotherapy, chemotherapy, another scan in a month.
We had survived those short painful weeks between the diagnosis on 25 November and Christmas Eve. We had fallen to the depths of despair but now we were pulling ourselves back up to a place of hope.
Then came the practical realities and ordeals of life as a cancer patient. Dad started on oral chemotherapy which, with antiseizure medication, made him terribly nauseated and gave everything a foul, metallic taste so that even drinking water was almost intolerable. His daily radiotherapy appointments were scheduled for first thing in the morning — an attempt by the radiotherapy staff to ensure that he wouldn’t have to wait in the waiting room but which forced him and Mum into negotiating congested peak-hour traffic. When he arrived, he would lie down on the treatment table and the rigid fibreglass mask would be placed over his head and bolted to a frame, the facial equivalent of a straitjacket.
As the treatment continued, his nausea worsened. It was January and the hospital was quiet, with many staff and doctors away on holidays. Not able to keep food or liquid down, he became depleted and started shedding weight. He saw a hospital dietician but was left disappointed with the solution: a supplement formula that tasted like chocolate- or banana-flavoured puke, as he described it. He couldn’t eat or drink, and there didn’t seem to be anyone to help him.
Fortunately one oncology professor, Martin Tattersall, had not gone on holidays. He said Chris was desperately dehydrated, admitted him to hospital and put him on a drip. Two litres of water with salts flowed into Chris’s veins and were absorbed into his body. Blood tests revealed that his liver function was abnormal. Gail phoned her father and told him about the liver function test. Murray said that the anti-epilepsy pills Chris was taking would affect his liver, and added that Chris needed to drink plenty of water. Gail hung up, relieved. Her father’s advice was always well informed, straightforward and immediate. Even though my parents had unfettered access to scores of medical contacts, Murray’s help was indispensable. How do people cope without all of this inside knowledge? she wondered.
Chris focused on drinking plenty of water and a dash of ginger cordial made it palatable enough. He still wasn’t able to eat much, and what he did eat frequently came up again. During the night, Gail would listen to him in the bathroom being sick. Back in bed she would stroke his hair as she had always done. But his hair was now coming out in her fingers and onto the pillow, not from the chemotherapy but from the radiation being beamed through his scalp. A large patch of bald head became obvious so Chris had his head shaved. Gail scooped up some of his thick black hair and placed it in a precious box in her bedside table.
He continued to shed weight and started to lose his strong, robust physique. But despite all of this, his attitude remained stoic and realistic. When someone asked, ‘Why has this happened to you?’, his response was, ‘Why not me?’ He met each indignity with humour, finding comedy in even the darkest and most difficult times. He would tell people that early morning radiotherapy appointments left the remainder of the day for leisure activities like vomiting and sleeping, or say that having retired, his days were now spent looking for his glasses and battling constipation (another uncomfortable side effect of the medication). He wryly quipped that overwhelming nausea during radiotherapy sessions — in which his head was confined to a position looking up at the ceiling — made him scared that he would ‘die like a rock star’ by drowning in his own vomit. ‘Nothing cures nausea like a good chuck,’ he once said cheerily after emerging from the bathroom. Another favourite line was, ‘The first thing I do in the morning is wake up and check my pulse to make sure I’m still alive.’
The opportunity to make memories is the blessing of a forecasted death, as opposed to a sudden one. With Dad now constantly around and physically well most of the time, our days were filled with happiness and freedom. In some ways, life was even better than it had been before. My clearest memories are of the simplest moments. Dad and I would do the newspaper crossword in the morning and walk to a local café in the afternoon. As summer became autumn and the air grew chilly, the café provided red throws for guests to drape discreetly over their knees. Dad hung a blanket over his head like a hijab and I giggled to see our teenage waiter do a double-take as he put the coffees down. Dad decided my brothers and I had to learn to drive manual cars, saying, ‘It’s a life skill you’ve got to have,’ and determinedly taught us despite much whingeing and resistance from the three of us. He was more fun and more irreverent than ever. One afternoon, James and Dad walked to the park with our little dog trailing after them. Mr Menzies, old and mature enough not to be walked on a lead, relieved himself on a nature strip as Dad and James walked on. They heard a woman call out behind them. ‘Excuse me! Your dog did a poo back there!’
‘Well, did you pick it up?’ Dad answered.
But for all our joy, we could never escape the sense that we were tied to train tracks, powerless to stop an oncoming locomotive. My mother had a horrifying dream of a dark, murky, menacing cloud appearing at their bedroom door. Billowing and heaving, it passed around Chris and floated towards her, threatening to engulf her whole. She tried to fight it off, beating it with her fists. It disappeared just as suddenly as it had come. Her thrashing had woken Chris, and as he whispered to her in the darkness, she came to consciousness. The dream was an intuition of our lives, in which we were constantly keeping one step ahead of death, constantly fighting it off.
Each month Chris would have a scan to monitor the effect of the treatment. The main mass had been debulked in the first operation and the hope was that it had not recurred and the concurrent therapies would take care of the satellites. These scans would approach with a crescendo of anxiety. We would collectively hold our breaths until Dad had viewed the results, which he was able to do immediately with the medical imaging director. No recurrence or growth would be met with an exhalation of relief, but inevitably the month came when the scan revealed bad news. In April it showed that the main tumour mass had regrown and a satellite was enlarged. This diabolical disease was demonstrating that its notoriety had been well earned. It was five months since that night in RPA’s emergency ward when Michael Besser predicted that Chris would have between six and twelve months to live. His prophecy was coming true, exactly as he said it would. And we were not ready.
After this news my parents attended mass, which they were doing more frequently these days. Gail had converted to Catholicism in 2000 and usually took great comfort in the community atmosphere of the parish. But as she sat in a pew, she felt the walls of the church close in on her. She excused herself and edged along the row, her vision blurred from the welling tears. She rushed outside and stood in the building’s shadow, unable to catch her breath, sobbing into her hands. Chris had followed her out; there was nothing he could do or say. He just wrapped his arms around her and they stood locked together.
Several people had suggested that Dad see Dr Charlie Teo for a second opinion. Charlie, a high-profile neurosurgeon adored by the public but cast as something of a maverick by the medical fraternity, was known for his brilliance and willingness to pursue aggressive surgical treatment. Chris knew Charlie from the beginning of their careers; even as a neurosurgical registrar Charlie had had a reputation for being as flamboyant as he was gifted and hard-working.
Chris had reservations. He was loyal to Michael Besser and trusted his advice. Also, seeing Charlie would mean being treated at Prince of Wales Hospital, a peripheral consideration but one that required a shift in thinking for an RPA man. Gail said she would support Chris in whatever he chose. But ultimately, the choice was not between Michael Besser or Charlie Teo. Nor was it a question of Royal Prince Alfred Hospital or Pri
nce of Wales. The choice was between succumbing to what seemed inevitable or pursuing what might be possible. Would he be a passive patient, accepting of his fate, or a proactive advocate, rejecting foregone conclusions? Would he choose life, or would he say die?
To Choose Life
Chris and Gail sat in Dr Teo’s office on a Saturday morning. Charlie bowled in, wearing a grey T-shirt, blue jeans and carrying a motorcycle helmet. His head was shaved like Chris’s, though for a different reason entirely. He exuded confidence and looked so youthful. Gail had never seen a surgeon like him.
Charlie held the scans up to the window and looked into them quickly, with almost a cursory glance. He said he was confident that he could do something with fairly low risk and went on to explain that the plan would be to debulk the tumour and radically remove a lot of surrounding tissue.
This was the moment Gail had been waiting for. They were still in the game.
Chris approached the operation with a matter-of-fact, job-to-be-done attitude. On the day of the operation, James accompanied our parents to Prince of Wales Hospital. This time, however, they were joined by a television camera crew as well. 60 Minutes had begun doing a story about Dad, which meant that Gail had reluctantly agreed to have cameras present. But she was pleased to find that they were not invasive or disruptive at all. The reporter, Peter Overton, was a warm, loving man who quickly became a friend to the whole family. The crew were forever sensitive and diplomatic. People have often asked whether the media coverage was an intrusion. Mum, Adam and I felt as though it was the opposite: Peter Overton and the crew were almost a support team who would intermittently appear in our lives. But I know that James would have preferred to be without it.
Charlie emerged from surgery to tell Gail and James that the operation was a great success. He had been very aggressive in his interventions and already checked Chris’s movement. No disability was evident.
Two days later, a nurse stood at the foot of Dad’s bed in Prince of Wales Hospital.
‘Have you moved your bowels today, Professor O’Brien?’ she asked.
‘No. Have you?’ He was discharged that day.
Home again, Dad began a new concoction of chemotherapy administered by his new neuro-oncologist, Dr Helen Wheeler. Initially after diagnosis, Chris had asked Dr Michael Boyer, head of medical oncology and then acting director of the Sydney Cancer Centre, to supervise his care. But Dr Boyer’s expertise lay in lung and prostate cancers and so, on Michael’s recommendation, Chris sought the advice of Dr Wheeler. Caring, highly intelligent and relentless in her approach to the treatment of brain tumours, Chris and Gail had full confidence in Helen Wheeler. When they first met her, she had her arm in plaster after tripping over her dog down the stairs, giving her an absent-minded-professor kind of quality.
Just six weeks later it became clear that the operation had not been enough. The largest satellite tumour was proving resistant to the chemo, and it was growing. Charlie Teo and Michael Besser had both warned Chris that removing this tumour posed the most serious risks. Located in the brain stem, it required opening one of the fluid cavities to the brain, with the risk of spilling malignant cells down the spinal column. More likely, even inevitably, was the prospect that Chris would be left with a hemiparesis (weakness down an entire side of the body) and hemianopia (loss of the visual field on one side). The tumour was on his right side, and any ill effects would be on his left. Charlie repeated the warnings, but Chris asked him to do whatever was necessary to remove that remaining tumour satellite and make him as disease-free as possible. Chris believed in his own profession’s capacity to give him the best chance of survival. He was prepared to face the risks, because he had already faced the crossroads. He had chosen life. And this was the path to which his choice led.
Gail was beside Chris when he woke from the anaesthetic after his third operation. They were in a neat room at Prince of Wales Hospital with a carpeted floor and bare walls. Chris’s body was propped upright in the raised bed. He blinked as he opened his eyes. ‘Oh,’ he said gently. ‘I’ve got the hemianopia.’ He turned his head slightly and looked in front of him, lifted his right arm and moved it in front of his face in a wide arc.
‘I can’t see anything from here onwards.’ He motioned from a line that started just to the left of his eyes and moved outwards.
He started to peel off his covers and clumsily moved his legs to the side of the bed. Gail jumped to his side and held his right arm. He stood and tried to take a step with his left foot but it couldn’t find the floor and pedalled through the air. Gail quickly moved around to his unsupported left side. His left arm was hooked close to his chest with his hand and fingers stiff and contorted. She bent down, took his left calf and ankle between her hands and placed his foot on the floor, stood up and resumed carrying his weight. He took a step with his right foot, then lifted his left, and again it swung and jerked without finding solid ground. Gail repeated what she’d done before.
‘Looks like I’ve got a bit of a hemiparesis as well,’ he said. They turned around and he leaned heavily on her as they stumbled the few steps back to the bed. She helped him slide himself onto it and lifted his left leg in. She went to the foot of the bed and placed her hand under the sole of his left foot.
‘Can you push against my hand?’ she asked, the first time she had used her knowledge in neurophysiotherapy for decades. After a couple of seconds he was able to awkwardly push his left foot forward.
It was late when she left and Chris was drifting in and out of sleep. She was exhausted and he told her she should go home. She kissed him and said she would be back first thing in the morning. She pulled the door to his room closed and let it click shut, before standing still for a moment on her own. She took a huge, deep breath and raised her eyes to the ceiling. What trauma had occurred in his brain, his magnificent brain? How will he cope tonight without me? She assured herself that the nursing staff would make sure he was okay, and kept walking.
Chris had a bad night. His left side was too weak for him to get out of bed on his own. He had to use the toilet but was so paralysed he couldn’t reach for the buzzer dangling over the left side of the bed. He was forced to lie and wait for the next time somebody came to check on him. When Gail arrived the next morning, his bedsheets were crumpled and askew under his body. His pillow had slid away from under his head. He needed a shave and a shower and she asked someone to help her.
Gail got him cleaned up but was concerned about the next two nights. He was so disabled that he needed to be looked after minute by minute, and Gail, exhausted herself, couldn’t be there all the time. She called her old friend Jenny, who convinced her to get a special nurse; it had been common for ‘specials’ to be employed for high-dependency patients at RPA in the 1970s when Jenny and Gail were young physios. Jenny made the arrangements with an agency, and a ‘special’ came over that day to look after Chris. We heard whispers that the ward and nurse unit manager weren’t impressed, believing that ‘Mrs O’Brien doesn’t think her husband is being looked after well enough’. But Mum didn’t give a damn about what anyone thought. All that mattered was that her own arrangements — privately paid for — ensured that Chris had the care he needed.
When Gail arrived with Carmel and Phil to take Chris home, he was ready to leave. He had dressed himself, which had taken him an hour, and managed to fumble most of his shirt buttons through their holes. Gail did up the remaining buttons and helped him lift his blue jumper over his head and push his arms through the sleeves. He looked terrible. He was pale, thin and unable to walk without Phil bearing most of his weight.
They had been told that the first few days would be the worst. The swelling from the operation made the hemiplegia stronger but his movement would improve as the swelling reduced. Chris lay in bed, unable to move much at all. The loss of the left half of his visual field made reading difficult too.
James was still boarding at school, doing his best to battle through his HSC year. Adam was working in th
e security industry which required long hours and shift work. I was travelling in Europe with Gareth. We had planned to go overseas but after Dad’s diagnosis I was reluctant to leave. Dad insisted that we go, so we shortened our trip to two months. At the departure gate I had kept on turning around as I walked away and Dad had placed his hand on his heart. I turned the corner and dissolved into tears. It was so hard to go; almost harder than I could bear. If I could advise my younger self now, I think I would say, ‘The Louvre isn’t going anywhere. What can you see in all those monuments and artworks that could be more wonderful than the love between you and your father? What greater lesson can you learn in Europe than what you can learn at home? Stay with your father. He won’t be around for much longer. Wring out every last drop of time with him that you can.’
Lying there in bed after the third operation, alone and unable to move, my father began to cry. Gail heard him and ran in. He didn’t stop, just sobbed and sobbed desperate and raw tears, engulfed by helplessness and the inescapable reality of what he had been reduced to. Gail helped to haul him up and they sat on the edge of the bed. She simply held her beloved in silence. There was nothing she could say or do. She now knew what Michael Besser had wanted to avoid.
Only twice in my life did I see my father really cry and both times, it was like watching a giant fall. The first time was after his mother died. My grandmother Maureen was a strong and charismatic woman, a magnificent school principal with a singing, resonant voice who earned the deep love and admiration of her three children. She sustained the family through tough times in their modest home in the western Sydney suburb of Regents Park. She was sixty-nine years old when she died of ovarian cancer in 1995. As I practised violin, aged eleven, in the annexe to the kitchen, I chose a particularly melancholic tune that rang out across the tiled floors. I looked over my sheet music at my father. Dressed in his work suit, he was leaning back against the kitchen bench. He hung his head and covered his face with an outstretched palm. I saw his shoulders heave up and down. As Mum came to console him I stopped playing and left the room.
This is Gail Page 7