The second time was after a friend of mine took his own life at the age of nineteen. Dad felt a deep sorrow for me as I wept for days. One evening he came into my room and sat beside me as I lay on my bed. ‘I’m so sorry to see you so sad, my darling,’ he said. I told him I couldn’t stop thinking of how desperate my friend must have been. As I said this, Dad bent over and put his face in his hands and wept next to my shoulder. I was so taken aback that my own tears stopped. Wanting to comfort him, I patted his back. I didn’t understand. I still don’t. Perhaps it was his daughter’s sadness. Perhaps it was the thought of this poor young man ending his life. Perhaps it was because his working life was full of sorrow as well. It was the first time I had any sense that he was not just my strong, brave dad who solved every problem and knew every answer.
In the days following that third operation, the swelling in my father’s head did subside and some movement returned to the left side of his body. Guillaume and David Pohl, one of Dad’s oldest friends, came to the house and the pair took him out for a walk. They steadied him along the footpath that now seemed so treacherously uneven. His left leg was uncoordinated and he shuffled along with short steps. But in the few metres covered, he found vast improvement and that afternoon was in a lighter, brighter mood. Gail knew that she needed to help him keep his mental state elevated.
As he adjusted to the hemianopia, Dad was able to read again by shifting his line of vision beyond the left of the page. His head would move left to right as if he was watching a pingpong match as he drank in literature of all kinds. He clutched the books spastically; dozens of paperbacks on our shelves still bear a thick crease down the middle from where his clumsy hand contorted them.
Adam spent a lot of time with Dad at home and James was there every weekend. When Gareth and I arrived back in Australia, we were eager to see my parents. I registered the sight of Mum leading Dad through the crowd at the airport arrivals. He focused on Mum and the path that her hand pulled him along, as her eyes darted around the people and objects in their vicinity, keeping watch for an arm or shoulder that he wouldn’t see. He appeared frail. She looked worn. That night at home, we laughed and talked over each other as Gareth and I recounted tales of our trip. We took silly photos with my new camera and relished our reunion. It was so good to be together again.
Sitting in the kitchen at home on my return was more joyous than all the adventures, more wonderful than all the architecture, more inspiring than all the galleries and more nourishing than all the cathedrals that Europe had to offer. We were a family unit fortified by something stronger than steel or iron; we were bolstered by love. Together, we were stronger. And we were all together again.
Caring for Dr Gorgeous
My father was a loving and appreciative but somewhat demanding dependant. He’d sing out from the office or living room, ‘Pinkie?’ and if my mother didn’t hear the first time, he’d just call a little louder, ‘GAIL!’
Each morning she woke up first to arrange his medications, cut up a small amount of fruit and take everything upstairs to him in bed. He would swallow the pills on an empty stomach and eat the fruit twenty minutes later. By that time Gail would have squeezed a fresh orange juice and be preparing a wholesome breakfast of scrambled eggs, mushrooms and spinach. Through these days, my father was slow to get moving due to medicine-induced fatigue, but once he was up the day seemed to yield little time for Gail. As the nausea had improved, food became a major preoccupation. He was looking forward to meals as a way of breaking up the day and Gail, always keen to make things more bearable, was exploring options that would be palatable and nutritious. Lunch chased down the late breakfast and was quickly followed by afternoon tea, and dinner was preceded by an appetiser. So much of Gail’s day was consumed by shopping and preparing meals.
Like a pregnant woman, Chris started to have unusual cravings. One of these was unexpectedly for Malaysian laksa from a small underground canteen at the northern end of Sydney’s Queen Victoria Building in the middle of the city — a fifteen-minute drive from home on a good day. With a team of willing drivers, a laksa run became a regular event, where someone would dash into town and bring home bowls of the fragrant soup with noodles and vegetables. The run required logistical planning as there is hardly any street parking around the QVB, so we often made the trip in pairs. On one occasion, Mum drove in by herself and parked illegally for the ten minutes it took to run into the canteen. Her outfit, hardly designed for a dash through the city, featured loose-fitting velvet pants and furry clogs (don’t ask). As she galloped down the stairway of the QVB, one of the clogs caught hold of a pant leg and she tumbled down half a flight of stairs. A man coming in the other direction was shocked at this dramatic fall which looked like a racing skier’s. But she assured him she was all right, scrambled to her feet and continued down the stairs with her purpose still at the front of her mind. She bought the laksa, made it back to the car (no parking ticket!) and home without further incident. But she had sprained her ankle badly and probably torn a ligament. It’s been a weak ankle prone to rolling ever since.
While the sore ankle was inconvenient, Gail didn’t mind the pain. In fact, she welcomed it as something real that could be coped with, as opposed to the invisible torture she was suffering. She would spend time in the garden, vigorously pulling at weeds and exerting herself, remaining within earshot of Dad if he should need anything. One day, as she leaned her foot on the edge of a rock and bent forward into a hedge to pull giant weeds from its centre, her foot slipped and her entire shin scraped along the rock’s pointed edge. Looking down, she saw her shin was torn from knee to ankle and bleeding profusely. She looked at the sky and said in her mind, Thank God this is pain I can feel. Many times, gripped by panic or stress, she would escape the house and sprint down Hunters Hill’s main road, running until she felt that her chest was about to explode. Again the painful sensation somehow felt like a release.
Symptoms of her inner torment did outwardly emerge. She was catapulted into menopause earlier than expected. An itchy rash appeared on her left shin, proving resistant to topical creams and medicines. She eventually controlled it with a combination of cortisone cream and oregano oil, but then it moved to her right shin and was even more difficult to treat. Eventually the rash cleared up a year after Chris died.
The focus of the sick is to get better. The focus of the carer is that, plus everything else. While Chris read or snoozed, Gail would race to do grocery shopping and errands. Our house was large and needed a lot of upkeep. The insurance companies required records of profit and loss statements from the practice and current income as invoice payments continued to trickle in. The practice was eventually wound up, a process that Gail oversaw. She would make time for these practicalities late at night, sitting alone in the office tapping into accounting software.
As he used his illness to advocate for better cancer care, Chris was more and more sought after to speak to the media or to take part in cancer fundraising and patient advocacy events. He was completely reliant on Gail to get to many of these. A journalist would come to the house to interview him and unexpectedly ask for a photo of Chris and Gail. For a time, Gail would run upstairs to throw on some make-up. Then she stopped bothering. They could take her as she was. Later she simply said no, she would not be in a photo. Chasing some kind of family element for the picture, photographers often satisfied themselves with the dog accompanying Chris instead.
Adam, now a probationary constable at Newtown Local Area Command, had moved to an apartment in Drummoyne with his girlfriend, Jaya. James was living at home and studying an Arts degree while I (also still at home with Gareth) was working in the media and now studying Graduate Law. We all did our best to support Mum and Dad. But it was clear to me how dependent Dad was on Mum, when he would wonder aloud when she would be home, even though I was being as attentive as I could. He would become anxious that maybe something had happened to her or she was finding it all too hard. The truth is, she rarely took time out
for herself because they were in this together. One day, Gail made a long-overdue appointment at her hairdresser. Pam had known Gail for twenty years, from the time I attended the local primary school with her daughter. Pam must have been able to see that her longtime client was exhausted and not herself. She took Gail to the washbasins in the back of the salon, sat her down and placed a towel over her shoulders. As Gail leaned back, she saw that Pam had dimmed the lights. One of the young hairdressers started tenderly massaging Gail’s head, and Gail knew the young woman had been told to take extra care of her. Tears welled in her closed eyes and rolled down her temples; this simple act of care for the carer touched her deeply.
Gail was handing Chris fistfuls of pills each day. The latest concoction of medications included temozolomide, procarbazine and thalidomide. She was astonished that he was being given this last drug, like many people associating it with tragic birth defects in babies born in the 1960s whose mothers had taken it for morning sickness. But now thalidomide was being used in trials to treat brain cancer and represented another long shot at survival. As Gail handed these drugs to her husband day after day, she came to look down at the pills in her cupped hand with dread. These medicines were supposed to deal with the malignant cells in his brain, usually by cutting off the blood supply to the tumour. But inevitably they would affect every cell in his body. His skin had taken on a plastic-like sheen and he had developed an eczema-like rash.
Gail began thinking about the impact of everything he was ingesting, not just the toxic chemicals but the food, meats, vegetables, oils, sugars, fats. Having desperately searched for meals he could tolerate during his nausea she had begun to think beyond scrambled eggs, homemade chicken soup and ginger beer — three things that he was able to endure throughout chemo. She researched clinical nutrition in the treatment of cancer, discovering foods that could counteract symptoms and side-effects and maybe even have their own positive therapeutic benefits. She sought out the advice of Dr James Read, a former medical student of Chris’s who was now a general practitioner with an encyclopaedic knowledge of nutrition. Other people, friends and strangers alike, sent advice, treatment suggestions and books with titles like The Ten Best Cancer Cures. Even a few unpublished manuscripts arrived telling tales of survival and treatment regimes.
Mum had always kept a healthy larder and cooked low-fat meals (forcing Dad, Adam and me to satisfy our sweet-tooth cravings by scoffing white bread lathered in golden syrup). But as my mother’s research deepened and she discovered the potential healing powers of nutrition, our fridge and kitchen cupboards became filled with experimental health kick ingredients and supposed super foods.
Many people are vaguely familiar with antioxidants as a marketable word printed on boxes of green tea or packets of dark chocolate, but apart from recognising vague claims such as that they help you live longer or stay healthier, many of us remain largely clueless about the actual benefits they provide. Gail knew antioxidants had cancer-fighting properties and the best place to find them were in fruits and vegetables, of which she already served plenty. But she set about finding more ways to load up Chris’s diet with them and other supposedly beneficial foods for cancer treatment. He drank fresh fruit and vegetable juices, ate leafy salads, spinach, raw broccoli, beetroot, mushrooms, tomatoes and steamed vegetables. Homemade soups, omelettes and grilled fish were staples, with avocado, pawpaw, watermelon, goat’s cheese, chickpeas and Manuka honey from New Zealand that was touted as having antibacterial and even regenerative qualities. Before dinner Dad usually enjoyed an appetiser of cheese and crackers, so Mum encouraged the alternative solution of crudités — raw vegetables like carrots and celery with hummus, taramasalata or other dips. She stewed apples to satisfy his sweet tooth. Blueberries (apparently the ultimate source of antioxidants) were scattered over his cereal and yoghurt or piled into a blender. Turmeric seemed to be a miracle spice with the potential to inhibit growth of new blood vessels in tumours. It was easily added to grilled fish or chicken.
One publication that landed on our doorstep described the Budwig protocol, the foundation of which is multiple daily servings of flaxseed oil and cottage cheese. I don’t pretend to understand the scientific rationales behind this diet (or any of the regimes that Dad tried), but the Budwig diet appears to be based on a belief that cancer is linked to a lack of polyunsaturated fatty acids like omega-3, which is found in flaxseeds. Although its ability to treat cancer remains unproven, Gail was willing to add it into the mix and served Chris a delicious daily meal of bruschetta with tomatoes, basil and cottage cheese mixed with flaxseed oil.
Of course, some of the advice was contradictory. A naturopath insisted on a vegetarian diet but an immunobiologist later said red meat was crucial for a strong immune system. Many books and papers celebrated the humble almond as a super food that could fight cancer while others railed against foods with high levels of copper, which is found in almonds. Consistent ‘no foods’ were alcohol, caffeine and, most devastatingly, sugar. Dad did his best to cut it out of his diet but there was a paradox between doing whatever he could to survive and doing what he enjoyed in what were probably his final months of life. His sweet tooth defeated all comers, and my brothers and I were regular accomplices in trafficking contraband such as Mint Slices and Tim Tams into the house. One of my last text messages from him said, ‘Hi darling, on your way home would you buy Paddle Pops or other ice-cream treats? XX.’ On a couple of occasions, Guillaume brought Dad’s absolute favourite: mini lemon tarts. I can still see Dad’s eyes twinkle as he looked over his shoulder to make sure Mum wasn’t looking before wolfing down his third.
Much later, Gail discovered the Canberra Medical Ecology Centre, where a clinical immunobiologist named Bill Giles offered holistic treatment with the goal of regenerating the immune system. Rather than using nutrition as a form of medicine, Mr Giles’ methods were focused on the natural poisons, toxins and bugs in foods and testing how these burden a particular patient’s immune system. There were some dietary changes to make as he recommended that Chris eat good-quality flesh foods — red meat, white meat and fish — cooked very well. In the following weeks Dad joked that he was now on a ‘modified vegetarian’ diet, which consisted of plenty of fresh fruit and vegetables . . . plus meat. Off the menu, however, was grain produce. After meeting with Bill Giles, Chris’s immune system was assessed as extremely vulnerable and in need of detoxing, and he was forbidden to eat grains: bread, pasta, biscuits, cakes, pastry or noodles. Grain-free pasta and bread that Mum bought from Deeks bakery in Canberra were stored in our pantry and freezer. Dad ate it uncomplainingly, although I mistook the bread for thick, bland cake. During the cleanse Dad also had to cut back on all that fresh fruit and legumes. Beer and wine were still out of the question.
Meanwhile, Gail was also dispensing dozens of supplements to which her research had led: Vitamins A, E and C, multivitamins, selenium, zinc, lysine, the list went on and on.
The benefits wrought by all of this are not easily evaluated. Perhaps the changes she made to his diet did make some difference and help him to live longer. But I believe that the greater benefit was that it offered my mother some kind of purpose and control. My father swallowed everything she handed him. Maybe he thought it could work, maybe he was simply willing to try anything that could help. But I suspect that he did it for her more than anything else.
My mother’s and father’s experience with cancer nutrition shaped strong views about the current state of nutritional advice for cancer patients. An unpalatable diet supplement and patchwork of research conducted by a desperate family member doesn’t qualify as world-class treatment. Around this time, Chris delivered the Lambie Dew Oration at Sydney University in which he said that nutrition is ‘one of the largest areas of deficiency’ in conventional medical treatment. He went on: ‘This sophisticated science uses intermittent weighing as almost the sole means of monitoring nutritional status and then facilitates maintenance or boosting of nutrition by providing chocolate- or ban
ana-flavoured puke at a very reasonable cost to people who are totally anorexic or struggling with nausea and vomiting. We really have to do nutrition better. There is an enormous amount of information available about nutrition and cancer, quite apart from the advice to eat plenty of fresh fruit and vegetables, in books, publications and of course on the internet. Patients and their carers need to be industrious and energetic in seeking out this information because conventional sources of educational material are inadequate.’
The desperate search for a cure didn’t just lead to tasteless bread and cottage cheese. Unconventional therapies found their unlikely way to my father by circuitous means. He was a man of science, the writer of more than a hundred scientific papers and seventeen book chapters during his career, and he created a database of head and neck cancers that became the largest in Australasia and one of the largest in the world. Yet desperation and a certain level of open-mindedness combined to take him to unexpected places.
Yin Yang Harmonisation Therapy was the creation of Leo Fang, a barrel-chested Mongolian-Chinese electrical therapist with a monk’s haircut and thick staccato accent. He claimed that it would align the body’s natural electrical frequencies and create better health — another goal of mind-numbing and immeasurable equivocality. For a few months in 2007, Chris attended sessions in this therapy twice a week, taking a ferry and then a bus to one of the clinics in Bondi Junction or Sydney’s CBD. He would sit in a big leather armchair with his bare feet in a bucket of water and electrodes attached to his body’s acupuncture pressure points. As electrical stimulation pulsed through his body, he would sit still and quietly, or chat with Mark Keighery, the man who had introduced him to the therapy.
This is Gail Page 8