So with a federal election looming in late 2007, Chris turned his attention to the Opposition and met with the Labor leader Kevin Rudd. A Queenslander, former diplomat and not one to be tapped into the minor celebrity status bestowed on people by reality TV, Mr Rudd had had no idea who Chris was. Yet during a one-hour meeting at Sydney’s Radisson hotel while Rudd was on the campaign trail, Chris convinced Kevin Rudd of the value of this policy. About a month before the election, the Labor leader pledged $50 million for a new purpose-built cancer centre on the RPA campus.
Labor was elected to government and on the same historic day that the prime minister apologised to the Stolen Generations, 13 February 2008, my mother drove my father to the nation’s capital to meet with him. Gail wasn’t to know then that in seven years to the day she would be standing on the podium at the Chris O’Brien Lifehouse, and in front of prime minister Tony Abbott, former prime minister Kevin Rudd and a host of other dignitaries, she’d be speaking at the opening of the operating theatres and inpatients wards.
On the day he met with prime minister Kevin Rudd, my father had lost all vision on his left side and could become easily confused and disoriented. Gail held his hand as they walked from the car into Parliament House. She even pointed him towards the correct doorway when the prime minister’s aide called Chris in. But while the location of the tumour had affected Chris’s sight, balance and coordination, it had left intact the qualities he needed to push for his cause: a quick mind, compelling use of speech and convincing personality.
Gail waited for Chris outside the prime minister’s office. When the two men emerged, she saw them interact in what was clearly the beginnings of a friendship. Over the following months, they would exchange text messages more and more frequently in a comradeship forged on similar backgrounds, shared beliefs and deep, reciprocal respect.
Beyond comprehensive cancer care, Chris was increasingly speaking about holistic treatment. His and Gail’s journey, traversing the myriad specialists, treatments, and complementary and alternative therapies, had given them new insight into the fragmented paths NSW cancer patients are forced to tread.
The monthly MRI scans kept coming around. We enjoyed an entire year without another operation and the scans had shown during that time that Dad’s brain was free of cancer. But in the middle of 2008, the images showed unmistakable progression of the tumour. The date for a fourth operation was set down for June.
‘Don’t do it, Chris,’ George Malka said. ‘Don’t have the surgery.’ For the previous year George had been dispensing homoeopathic remedies which my mother and father compliantly took. Chris’s general wellness and immunity had improved since he took a break from the chemo. George believed that surgery would set this course back. But as much as my father respected George, he could not shun surgery in favour of unproven remedies.
The anxiety we had all felt leading up to the previous surgeries had given way to resignation. My mother knew that once she left Dad in the hands of Charlie Teo, there was nothing she could do. She had complete faith in Charlie, and her job was to get Dad to the hospital, as it was to get him to the airport for a flight. Charlie focused on debulking the main mass of the tumour and the procedure didn’t cause Chris any further problems. In fact, he felt so well that from his hospital bed he complained to me that he wanted to lose a couple of kilos around his belly and asked me to take him for a walk around the block.
As planned, this fourth operation bought us more time. We did not know then, though, how little.
In October 2008, Mr Rudd launched Chris’s memoir, Never Say Die. Chris had been approached by HarperCollins to write the book and he’d dictated it in the space of a few months. At its launch, Chris told the room that, just three months after his fourth operation, the latest scan had revealed two nodules of tumour adjacent to the main mass. True to the defining features of glioblastoma multiforme, the tumour’s tentacles had fanned out through his brain, and nodules, like new small tumours, were materialising in new places in the cancer’s web.
As Dad was facing a month-long publicity tour and countless television and radio interviews for his book, Dr Wheeler put him on a new course of chemotherapy drugs by infusion. You might ask why Chris and Gail would say yes to a book publicity road show when he was so unwell. But the reason is simple — it was an adventure. He was not thinking about impending death; he was still thinking about what life remained. Precious life! It was so unexpected to have new experiences that were fun at this point. Besides that, each talk or interview was another opportunity for him to state his case for comprehensive cancer care.
One morning near dawn as Gail drove Chris to a breakfast television program, she said he looked too rundown. ‘You’re taking on too many things, Christie. You need to say “no” occasionally.’
‘But talking about myself is one of the only things I’m still good for,’ he said, smiling.
A few days after his fifty-seventh birthday, Chris pulled himself out of bed mid-morning. He was scheduled to give an interview to the ABC a couple of hours later, but he was not feeling well. His head was pulsing and his mouth was bonedry. Gail went through the usual motions. She brought him his medications, prepared some breakfast and helped him get dressed. She drove him to the ABC studios in Ultimo, as he rested his head on his hand. As she parked she told him they were running late, and rushed around to help him out of the car. Chris could not move any faster. He heaved himself out and took Gail’s hand. They started walking extremely slowly. Gail knew that this pace was ominous. Each time the oedema collected in his head, his steps would become slower, deliberate yet uncertain.
Small step by small step, they made their way to the studio. Chris greeted the team and sat in the chair with the microphone before him. Then he began to talk and his voice sounded strong, deep and composed.
‘How are you feeling?’ ABC presenter Michael Peschardt asked live on air.
‘I feel well,’ Chris said with lightness in his voice. ‘Mornings are not my best time, even though this is late morning, this is about my getting up on time.’ And he laughed. ‘But apart from that I’m well.’
Gail stood with the producers in the studio’s antechamber, watching and listening through the glass. She shook her head, not in disapproval, but disbelief at his composure. No one listening to the radio could possibly hear what she could see.
As the interview continued, Michael asked Chris whether there were times when he was angry. ‘No. In the last couple of weeks, it’s interesting and I don’t know why this is — I’m due to have a scan tomorrow — I have thought of death a little more. I’m still not frightened of dying. Death doesn’t really frighten me.’
‘Why not?’
‘I don’t know why. But I’m just not frightened of having that final sleep. I don’t think there’s anything to fear. What can happen to you? I’m not in pain. When my death comes I won’t be in pain. It concerns me in relation to my three children and my wife, who I think will find it very, very difficult . . . Sitting there and wondering how they’ll cope and what their future lives will be like is concerning and perhaps it’s something better not done. You can tie yourself in knots wondering about what will happen to one’s children or one’s wife and how their lives will play out. But I have no control over that.’
‘The public response to you — how much of a comfort has that been?’
‘Oh, it’s been extraordinary. Even at the time of my diagnosis, I was just flooded with so much warmth and concern and support and love, from all over . . . the sentiments with which [ people] expressed their feelings were just extraordinarily kind and generous. They were just so nice to me.’
‘It’s a terrible way to realise that, isn’t it?’
‘Well, I suppose it is, but apart from the fact that I’ll probably die from this illness — apart from that — it’s really been an extraordinary gift and this journey has been really remarkable.’
‘See, I’m blown away by the way you can say that with, I don’t know,
equanimity? I don’t know. But with so much objectivity, and calm grace and courage. Where does that come from?’
‘I don’t know, to be honest. As I said, I’m not fearful of dying. And I think this thing will catch up with me. I hope it’s later rather than sooner.’ He had taught us how to live. Now he was teaching us how to die.
The next day Chris had the scan and spoke to Charlie on the phone. Charlie was frank. ‘You’ll be dead in a month if you don’t have an operation,’ he said. There was significant progression of one of the nodules — now measuring four centimetres — and a lot of swelling of the brain. They scheduled another brain operation — Chris’s fifth — for the following day. From that surgery, my father would never recover.
Witness to Grace
The operation on 9 January 2009 lasted five hours. It took an hour and a half for the surgical team to pull and stitch the large wound in his scalp closed. When Chris awoke, he murmured, ‘No more. No more.’
‘All right, Christie, no more,’ Gail whispered into his ear and kissed his cheeks and forehead.
A day later Chris developed a dense left-sided paralysis that left him unable to move that side of his body at all. Thankfully, it resolved as quickly as it had appeared. He came home four days later with that long gash more painful than ever. A hole the size of a pinprick opened up at its centre. The skin was refusing to remain sealed and heal. Dad started carrying a bottle of antibiotics around his neck or in a bumbag, flowing through a PICC [Peripherally Inserted Central Catheter] line into his left arm to prevent infection of the wound.
The rollercoaster was relentless and we took each high, dip and swerve at a time. A high, such as spending a few days at a friend’s splendid apartment in Surfers Paradise, enjoying family barbecues and wading in the rooftop pool, was inevitably followed by a low, with the flight home punctuated by a night in hospital as brain swelling caused Chris to suffer double vision, vomiting, a bad headache and confusion.
The dense paralysis returned and his left side weakened further. Soon he could not walk without the aid of a walking stick. As Dad tapped his way down the hall or jokingly drummed it at his feet like Ebenezer Scrooge, the borrowed cane from the chemist made a distinctive sound — more a chink than a thud — that I can still hear. The paralysis waxed and waned, but overall he needed more and more physical help. James spent a lot of time helping our father in practical ways such as getting up and down the stairs and dressing in the morning. Dad fell on a couple of occasions while trying to get into bed and James would be there to help Mum lift him up. ‘Jamesie boy, you’ll have the perfect excuse if you ever become a serial killer, having to help your naked father off the floor,’ Dad said.
The pinpoint hole in the wound grew, splitting the skin apart more and more. It revealed a dark crevasse into his skull, as a clear fluid — the cerebral oedema — oozed out. He asked me to take a photo of the wound so that he could inspect from the photo whether it was infected. It was not, and in fact we were later told probably prolonged his life for several more months because it drained the fluid away and relieved the intensifying pressure in his head. The leaking wound required daily dressing, which my mother did, as well as gentle community nurses who came to the house.
As the pressure mounted in the right side of Chris’s brain, the left side of his face began to droop and his speech became slurred. But he used all this to full effect when joke-telling. Whether he was impersonating a deranged lion tamer, a bartender with a speech impediment or a woman with a deaf schnauzer, he wove evermore absurd stories with bizarre characters and voices. ‘They’re your jokes now,’ he told my mother’s brother and sister-in-law, Murray and Lyndell, after lunch one day.
I don’t recall seeing my mother cry as her strong, robust husband deteriorated before her eyes. She cared for his every need with determination and a singularity of purpose.
Her desperate search for life-saving formulae continued to close to the end. The last thing she tried was a plant extract called methyl jasmonate which she imported from the USA. Even though it was unlisted on the Pharmaceutical Benefits Scheme and regarded as a complete wild card by the medical establishment, Dr Wheeler had supported Gail to help her source it from overseas. Chris obligingly took the methyl jasmonate, drawing it through his airways from a diffuser of hot water. But it started to make his nose bleed, on top of everything else, and she knew that her attempts to save him had to end.
For all my mother’s work — her searching, researching, cooking, experimenting and driving — no matter what she did, Chris never got better. This was not like the flu or a viral illness that comes and goes. It wasn’t like the tonsillitis he’d had when they were in Paris all those years before. It was always there. ‘I would cut off my right arm if it would make you better, Christie,’ Gail said. But nothing could make him better.
One day, she went out for a walk on her own and a word occurred to her repeatedly: accept. She had to accept. She had reached that point.
On Good Friday Adam, James and I attended mass with our father. The afternoon service was a sombre one, marking Jesus Christ’s crucifixion. Villa Maria’s tabernacle was stripped of its ornaments and the altar lay bare. Father Kevin and assisting clergy entered in silence without the usual singing, and the solemn liturgy began. A large crucifix was unveiled and held up at the front of the church. One by one, people stepped forward to venerate the cross by kissing or touching the wood or Christ’s feet. My father began to rise and my brothers held out their arms to support him. Dad took their hands and the three of them edged out of the pew and inched together down the aisle. He leaned on his sons as he knelt to the ground and kissed Christ’s feet. I saw our parish friends wipe away tears.
When it came time for communion, I approached Father Kevin alone. The afternoon sun streamed through a stained-glass window behind me. As he held out the wafer, Father Kev’s head tilted up, and his glasses and wet eyes caught the light, reflecting it back to me. He squeezed my hand as he placed the wafer within.
Around this time, Dad wrote to my brothers and me.
My darlings,
What do you value? What are your values? What principles guide your planning and actions and then allow you to examine and judge those actions?
Try to have a think.
The following, I think, are worth keeping in your hearts:
1.Tolerance
2.Fairness
3.Kindness
4.Honesty (absolute, including with yourself)
5.Hard work — remember EQ (effort quotient) overrides IQ
6.Loyalty–faithfulness.
7.I adore you all,
8.
9.1 and 2
10.Recognise the rights of others
Working hard to live by your principles takes effort, conviction and frequent review.
This note captures my dad in so many ways, not just what he was like as a father and mentor, or what his own values were, but his knack for inserting the unexpected, like the way he left number eight blank and used number nine to make us look again at points one and two.
Dad’s advocacy work continued with more urgency than ever. I would often find him in the study typing emails with just the index finger on his right hand as his left arm hung heavily, almost lifelessly, down his side. Since securing funding from the federal government, plans for a comprehensive cancer centre at Royal Prince Alfred Hospital, to be called Lifehouse at RPA, progressed rapidly. Chris continued to make phone calls and send emails at all hours of the day and night. These things consumed his time and energy as he attempted to lay the foundations for a successful centre by putting in place a strong board of directors and executive team.
Lifehouse at RPA was launched on 17 April 2009 at a reception at NSW Government House, where the prime minister Kevin Rudd announced further funding of $100 million. Adam helped Dad to the stage and stood protectively behind him, like a sentinel, for the duration of his speech. As newspaper photographers clamoured around them afterwards, Kevin Rudd and Chr
is sat chatting on the balcony. Mr Rudd held Chris’s saucer so that he could use his working hand to raise a teacup to his lips.
Kevin Rudd suggested that he attend mass with us the following Sunday. He came with his teenage curly-headed son Marcus, and sat in the pew next to Dad. During communion Mr Rudd said, ‘I brought a present for you, mate,’ and pulled a small red box out of his pocket. It contained black rosary beads given to him by Pope Benedict. As Dad accepted this precious and generous gift, he was overcome by emotion, and briefly and quietly wept. Afterwards Kevin and Marcus came to our home for afternoon tea and chatted easily with the family and parishioners who joined us. Other than polite Australian Federal Police officers checking out the house before his arrival, and Guillaume bringing trays full of exquisite finger food, it felt like any other autumn afternoon tea that Chris had hosted.
By now scans were showing a large amount of tumour progression and the right hemisphere of Chris’s brain was overwhelmed with swelling. The tumour was also edging into his brain’s left hemisphere, his dominant side. Dad now needed constant care. His left side became progressively paralysed and when his left leg stopped responding we arranged for a wheelchair in the house. Mum and Dad moved into my bedroom, which was downstairs. James maintained the responsibilities of undressing him at night and helping him into bed. I read to him and typed his dictations. Adam spent the afternoons in his company. His pleasures were simple — he listened to music, satisfied his sweet tooth, drank a little pinot noir and continued to read and be read to. Each morning Mum would shower him, dress him and brush his hair. He sat in his wheelchair, looking into the mirror, as she gently smoothed his hair away from his face.
This is Gail Page 10
