For more than a year I had experienced pain in my right foot whenever I ran for more than twenty minutes. It had forced me to abandon running and take up cycling, but otherwise was no inconvenience. I thought it best to have my foot checked in case there was a long-term problem I needed to address. Even having the time to schedule an appointment with a local GP about my foot was indicative of my new life. My foot had been a problem for my last six months as premier, but I was always too busy to pay it any attention. I was now living a life where I could look after myself better and not let little things like this drift.
While my new local doctor examined my foot, I mentioned something else I’d noticed recently that perhaps she should look at. During an early-morning shower I’d felt a small lump on the side of my face, near my right ear. I thought little of it, but I had begun to poke and prod it in daily curiosity. It was painless, it didn’t seem to grow, but neither did it disappear. I mentioned it almost as an afterthought. The doctor thought it curious but not alarming, and suggested I have it X-rayed at the same time as my foot.
Feeling no rush to resolve minor ailments, I arrived at St Vincent’s Clinic in Darlinghurst on a Friday morning for my X-rays some six weeks after that GP visit. By this time, the lump on my face had grown from the size of a pea to that of a large marble, like the tombolas my brothers coveted as little boys. Although it was now visible in the mirror if you knew where to look, I had become quite used to it. I was curious but unconcerned.
After the tests, while I waited in the clinic for the X-rays,a nurse said that the radiologist would like to conduct an ultrasound of the lump on my face. During the ultrasound I learned about the parotid gland for the first time. The parotid is the largest of our saliva glands and wraps around the junction of our jawbones. ‘Parotid’ means near the ear, and apparently I had something strange in mine. Waiting again for results, I was told they would like to do another test, an MRI with contrast dye. By now it was early afternoon, and I was beginning to understand that my foot was not the problem. By the end of the day, a day that had started out like any other, I knew I had a tumour in my parotid gland. I knew it could be benign or malignant. I also had an appointment to see a head and neck surgeon the following week.
I spent that weekend researching parotid gland tumours. I learned that more than eighty per cent of these tumours are benign, and that they affect more women than men. I learned that the proximity of these glands to the facial nerve can make surgery complicated, but if left unchecked a growing tumour can also put pressure on this nerve and cause some disfigurement. Knowing all the caveats that the medical profession puts on internet medical research, I tried to seek out reputable sites, but of course one site led to another and several times I found myself staring at graphic and gruesome patient photos of facial surgery gone horribly wrong. My research did mean, however, that I was not surprised when the surgeon told me he wanted to remove my lump as soon as possible. He was reassuring and confirmed that these tumours were overwhelmingly benign, reminding me that the word tumour is just a fancy term for a swelling. Surgery was scheduled for a fortnight’s time. Like most people, I hate hospitals. I’ve had a few minor procedures and know that I hate anaesthetics. This trip to hospital was no better or worse than any other. However, when I finally came to and felt what had been done to the side of my head, I was pleased that I had stumbled upon those gruesome medical websites. Part of my head had been shaved and I had a line of staples down my scalp, leading to stitches behind and in front of my ear.
Thankfully, nerves in the area had been temporarily knocked about, causing numbness, so I was foggy but not in pain when I woke to find Greg, Joe and Oliver and his girlfriend waiting for me in my hospital room. After an hour or so, the boys’ minds turned inevitably to food and they headed off to the nearby and exceptionally good Messina ice-cream shop, returning with buckets of extraordinary flavours. The atmosphere in my hospital room was almost festive as we ate ice-cream and laughed, relieved that the tumour had been cut out. In a bizarre twist of modern medicine, my surgeon showed me a photo of my tumour on his mobile phone. It was both repulsive and fascinating, red and swollen and larger than I expected. I was very glad that I no longer had it growing in me. Now we just had to wait for the results of the pathology tests, but the worst seemed to be over.
Four days later, I sat in a waiting room with other patients, waiting to see my surgeon for a post-operative check-up. The original biopsy had been inconclusive and further pathology tests had been required to discover whether it was benign or malignant. Knowing that the world of science and medicine can be slow, I was unworried by this uncertainty. Nevertheless, I rang my doctor earlier in the day seeking some news, only to be told that he was in surgery and I would have to wait until my appointment later that evening to discuss results with him. It occurred to me that if the results were clear, his assistant would likely have been authorised to advise me, but I brushed this suspicion aside. Greg had a longstanding commitment to join one of his oldest friends at the Sydney Film Festival, but he wanted to cancel and come to my appointment with me. But opportunities like this were among the reasons we’d returned to live in Sydney, so I insisted he go to the film. I had no concerns about going on my own.
But as others were called ahead of me, and I realised I would be the last patient my doctor saw that evening, I started to worry. When he came into the waiting room to call me, he looked around and asked, ‘Where’s Greg?’ I knew this meant he was concerned that I was on my own, and I felt the cold itch of fear.
In his surgery, he first examined my wound. If he had good news he would have rushed to deliver it, I thought. I looked straight at him and asked about the tests.
He looked away briefly and drew a breath. ‘I’m very sorry, Anna, but the tumour is malignant,’ he said. This doctor removes growths and tumours for a living, he must have said these words a thousand times – and yet he was uncomfortable, even distressed, to deliver them. These words clearly don’t come any easier with the telling. He was professional and didn’t sugar-coat anything as he explained what would come next. I knew I was staring at him and worried briefly that my mouth was gaping open. For a while I couldn’t even hear him. My ears had snapped shut with the shock of it. When I could hear him again, I couldn’t understand him. I heard a litany of words that sounded like death: bone marrow biopsy,
PET scan, ECG, chemotherapy, radiation, haematologist.
Death, death, death and death.
Not me, not now, I am not ready.
The news should not have shocked me as it did. I had just had a tumorous growth removed from the side of my face by a head and neck surgeon. I had known for a couple of weeks that the original biopsy had been inconclusive and that there was some possibility that it may be malignant. But I was incredulous to hear it confirmed.
Not me, not now, I am not ready.
I felt numb with disbelief. Recovering enough to know that I didn’t understand what I’d just been told, I asked my doctor to say it all again, from the beginning. What we’d thought was a lump in my parotid saliva gland was actually a tumour in a nearby lymph node. I had non-Hodgkin lymphoma and it was going to change everything about this year and much more. Just when I thought all my walls were behind me, when I had done all the hard things my life would demand of me, the universe had served me up another. This time I would not be the first one through it, though. I would be the beneficiary of all the knowledge and research and treatment pioneered by those who had gone before me. To them, I felt the warmest gratitude. I needed further tests to determine how advanced the disease was, I needed to see a haematologist to consider treatment. The doctor had already scheduled these appointments for me over the next six days. I walked out of the building into the cool darkness of an early winter’s night. Greg had left me a text message asking about the results, but I couldn’t tell him this in a message. I felt a superstitious fear that it wouldn’t be true until I said it, that telling Greg would make it real. I couldn’t think of the words for this. I did not want to say the word ‘cancer’ out loud. It was too big for me and too big for him. I sat, dazed, on a low brick wall in Victoria Street, watching patients shuffle back in through hospital doors and homeless people gather on the corner of the nearby park as a mobile food and coffee van pulled up. I texted Greg to call me during the interval, buying time to collect my thoughts.
I was alone on the footpath, walking back to the car, when Greg called. Seeing my text, he’d known immediately the news wasn’t good and left the theatre to call me. As I heard his voice, a hot rush of tears choked me. Gone was my numb calm and my brave face. I gave in to the terror and sorrow of it, gulping back tears, my throat full and unable to talk as Greg tried to find out where I was. He told me to breathe and talked quietly to calm me until I could say, ‘It’s not okay, it’s cancer. I’ve got lymphoma.’ Through the phone I felt it hit him, as it had hit me, like a bodywasting punch. I steadied myself against the car and reassured him that I could drive home and would meet him there. At home, there was another phone call to make. I needed to call Mum. I craved her comfort like a child just fallen off her bicycle, but I dreaded telling her the news, fearing what it would feel like for her to hear this about a daughter. How could I break this sorry news? This call was even harder than the call to Greg. I didn’t want to frighten her. She wanted to be strong and comfort me. We both lost our resolve and cried together. Living with my sister in Grafton, she felt so far away. Having worked in hospitals for much of her life, she knew more than I did about tests and treatment and what came next, but for now she talked tenderly of love and strength and her faith in me. Greg walked through the door as I finished the call and I felt the warmth and comfort of him, like a treasured blanket, as he folded me in his arms. We still had the awful task ahead of telling our boys and we talked at length about the language we would use – honest and accurate but optimistic and hopeful. The conversations with Joe and Oliver were tough. The terrible power of the word ‘cancer’ frightened them, too, but they were quickly fortified by their need to be strong for me.
I suspect that you, like me, expect something as striking as cancer to announce itself with some dramatic fanfare. In truth,
I hadn’t given it much thought but had some vague notions that it must come accompanied by sudden blinding pain, that it would grip the sufferer in the same way women in the movies are suddenly gripped by the first pangs of childbirth. But cancer comes stealthily. By the time I felt that small lump in the shower, my cells had already started multiplying faster than they should and, critically, they had forgotten how to die. Cancer is not an infection; it is not the invasion of a healthy body by a foreign, toxic organism. There are no bacteria or viral enemies to blame and conquer. A cancer cell is one of my own, mutated by my body. It is my own body, malfunctioning in the most serious way possible, nurturing cells that are multiplying at a deadly rate.
As I embarked on a series of tests to find out how far the lymphoma had advanced, I felt the boundaries of my life contract. Board meetings, lunch dates, arrangements with friends and scheduled plans, all were cancelled and abandoned as medical appointments filled my diary. My life shrank as I danced to the tune of this tumour. In a matter of days, cancer filled my life. It clogged my waking thoughts and night-time fears. It saturated my conversations, my reading list, my inbox and my outbox. I was astonished by its rapacious speed as all my loud and quiet corners and every nook and cranny of my life were suddenly flooded with it.
Lymphoma is a blood cancer, affecting the lymph, or immune, system. I needed a bone marrow biopsy to determine how deep into this system my cancer had stretched. Bone marrow is where our blood cells begin, but it is locked inside our bones and extracting a sample is no easy task. I readily agreed with Greg that I would not do this on my own.
We walked through the doors of the Kinghorn Cancer Centre on Victoria Street for the first of many visits. I had felt ready for this and was keen to know the results, but getting to the biopsy clinic required walking through the chemotherapy ward. On all sides, people were hooked up to bags of chemotherapy drugs, and most were bald. Some were very old and frail, others heartbreakingly young. They were all pale, tired and sick. Soon I would be one of them. My confident pace slowed. I felt my throat thicken with more tears, and I gripped Greg’s hand.The insertion of a large biopsy needle into my pelvic bone at the hip, our largest reservoir of bone marrow, to draw the soft marrow out of my bone, was a painful process. Bones,
not containing nerves, cannot be anaesthetised. It has become increasingly common, though, to give patients what is gently called ‘twilight sedation’ through a self-administered infuser, known as the green whistle. This is a large green whistle-shaped container that I was encouraged to place in my mouth and breathe from deeply as I felt pain. As I lay on my side facing Greg, and the biopsy needle did its job, I needed no encouragement. Using the green whistle had immediate and disconcerting results. I got instant pain relief, but my consciousness was quickly altered. Decorum fell away as I began to sob and tell Greg and the nurses that I was in the wrong place, that I wasn’t like the other people in the ward, that I wasn’t a sick person and that I did not belong there. I begged Greg to get me out of there, to tell them that I wasn’t sick. I begged him to save me. Thanks to the green whistle, I was uncomfortable but not in pain. But its fumes unloosened me, and in my uninhibited delirium all the truth of my fear and denial flowed out of me. Greg was frightened and deeply upset. But the weakness of the body can also be hilarious. After a while I stopped crying and started telling the nurses that they were the best in the world and should be up on a stage getting an award. Apparently I had the whole room
laughing. Thankfully, I don’t remember any of it.
Next was a PET scan. PET in this context is not a small cuddly animal or a term of endearment. PET is positron emission tomography. This scan was to be accompanied by a CT (computed tomography) scan, and together with the bone marrow biopsy would tell us how far into my lymph system the cancer had penetrated. Despite my fear, I found myself fascinated by the science of these tests. In a PET scan, radioactive sugar is injected into a body that has been fasting and has a very low sugar count. Cancer cells, growing and multiplying so much more quickly than normal cells, are hungry for the sugar and are the first to take up the radioactive substance as it courses through the body. The scanner then photographs these uptake sites as they light up like a Christmas tree.For patients with lymphoma, a machine that combines a PET scan with a CT scan is used for these tests. This allows a comparison of areas of sugar-filled, higher radioactivity on the PET scan with the more detailed appearance of that area on the CT scan. CT is a technology that uses computer-processed X-rays to produce images that are virtual ‘slices’ of specific areas of the scanned object, allowing the user to see what is inside it without cutting it open. As I lay on the bed of the scanner and waited for it to move me into the body of the machine for the CT scan, I was injected with a contrast agent that would assist the test. I was told that this would create the sensation that I had wet myself, but not to worry because it was just an illusion. This was one of the strangest things anyone has ever said to me, and I couldn’t believe I’d heard correctly. However,it turned out to be exactly and perfectly true, and the sensation so accurately mimics the real thing that I was seized by the iumiliating certainty that I was one of the rare few for whom this was not an illusion, but the real thing. Blessedly, this was not the case, and I was struck again by the strange humour of the human body. Here, inside this scary machine, I couldn’t believe that my body could deceive me with such precision. I laughed when I reflected that it was this woman’s job every day to reassure people that they had not lost control of their bladder, they were simply hallucinating that they’d wet their pants. As the idea of this deadly imposter quietly eating away at me began to settle in my mind, I felt an intense need for privacy. I wanted only the comfort of very close friends and family. But as I returned over and over again to the different wards and clinics of St Vincent’s Hospital, visitors and staff regularly recognised me and stopped to talk, most of them not knowing I was sick. With every hello, I became more fearful that my illness would be exposed.
This anxious fear reached new heights on the morning I arrived early for my next test, an ECG, or electrocardiograph. The ECG measures the electrical impulses of the heart to ensure it is functioning well. Apparently, part of my proposed chemotherapy could affect my heart function, so before I began treatment it was necessary to see how healthy my heart was. Walking towards the lift, facing another morning of fear and worry, I jumped when I heard my name called. The elderly couple were friendly Labor supporters who recognised me and asked to have a photo taken with me. Happy to oblige, I stood with them and chatted, but they took some time to find their camera, then to seek out a hospital volunteer to take the photo and to fuss about getting the pose right. Their simple request drew attention to me and soon the hospital volunteer also knew who I was. These were all good people, with no wish to do me any harm, but I began to feel anxious about where this photo would end up and who they would talk with about seeing me here. The episode was a sharp reminder of the ubiquity of smartphone cameras. The hope that my increasingly regular attendance at cancer clinics would go unnoticed was rapidly fading. I worried about being too sick to manage the sudden exposure if it came, and about this being added to Greg’s growing list of responsibilities.
As I lost control of every small part of my life, I knew I could still control this one decision and its timing. Greg and
I wrote a short public statement that one of my former staff,
Lorann Downer, kindly agreed to distribute to media. She also agreed to field calls on my behalf. She spoke personally with the senior Queensland political journalists before my statement hit the wires, and took calls well into the evening. It was the first of many generous acts of love and kindness that would come our way as news of my cancer became public knowledge. My last test was on the Friday morning before the Queen’s Birthday long weekend in June 2012. We were scheduled to spend the weekend with two other couples at a friend’s farm in Mittagong, in the highlands south-west of Sydney. We decided to stick with this plan. It would be our last weekend before getting the test results and starting treatment, and we yearned for the solace of close friends. As my media statement began to reach news desks, we also felt the attraction of escaping to the protection and anonymity of a distant farm where we couldn’t be found or contacted. As we crawled our way south, hedged in by the Friday evening throng of others also heading away for a country weekend, we unexpectedly got some welcome, early news. My tests showed my lymphoma was restricted to my neck and throat, that it had not yet migrated to other parts of my body. We were glad of the slow traffic as we felt the tears come, this time tears of relief and gratitude. Perversely, we now had something small to celebrate with friends when we arrived at the farm.
Our friend’s farm is built along a high ridge overlooking a vast mist-filled valley of state forest. With a large fireplace, big warm kitchen and endless walking tracks, it is a perfect place to cuddle into winter. It was a weekend of slow-cooked meals and long lazy lunches, of crackling roaring fires, full-bodied red wine and hot caramel bread-and-butter pudding, of talking late into the night and sleeping late into the morning, of long walks and the sweet steaming breath of horses. We are all old friends and the paths of our lives had crossed and criss-crossed through the ups and downs of relationships, children, work, travel and holidays and everything in between. Greg Combet was there with his new partner, Juanita, and her young children, and the house expanded with their laughter and games. The leadership of the federal Labor Party was once again brewing to a challenge, and Combet was grappling with big decisions of his own as he weighed up the option of throwing his hat into the leadership ring. Our talks were filled with the gravitas of life-changing questions for us all. Nevertheless, these few days were a happy respite, a pause that gave me just a moment in all the urgent chaos of that week to catch my breath. It was a weekend full of the simple, warm, happy pleasures of life and I clung to them
like a board in an ocean rip. As the news about my illness began to fill the news bulletins, those early days in June began to fill with another kind of warmth. I had made the decision to go public in much the same way I had made other decisions in that week full of medical procedures, as another chore to tick off the list of things that needed doing before my treatment started. I made it because I wanted it dealt with and out of the way.
Caught up in the gravity of what was happening to me, I had not contemplated the reaction my announcement would generate or how that might affect us. Within minutes of the first news bulletin, Greg and I began to receive messages from friends and work colleagues, from people we knew well and people we hadn’t heard from in years. Every message was full of love. Our phones filled with words like ‘heart’ and ‘prayer’ and ‘thoughts’ and ‘care’. The news had come as a shock, and the messages were emotional and immediate, unfiltered by caution or politeness. We began to feel as if people were wrapping their arms around us. We suddenly understood how weary and anxious we had been after just four days of bearing the news together, and how much we needed the love and care of others to hold us up.
As I began my treatment, cards and letters full of similar sentiments joined the messages that had filled my phone. Almost without exception, these messages spoke of my strength and the writer’s conviction that this would get me through. Like the letter from one of my favourite western Queensland mayors, a politically conservative but very decent man, who wrote: ‘I have witnessed your steely resolve and your strength and trust that these qualities will guide you through this, your greatest challenge.’ Or the card from Billie, one of my oldest local branch members in Brisbane, who herself had seen plenty of hard knocks. She told me: ‘Hey, drought, cyclone and flood could not beat you and cancer won’t either.’ The card from friends in the Blue Mountains exclaimed, ‘Any woman who can win years of ALP backroom brawls can beat a tiny tumour!’Other writers told me their own stories of defeating cancer and exhorted me to be positive. Some messages came with flowers or small gifts like a knitted beanie or a bright purple wig. Many were genuinely heartfelt messages of faith, promises to include me in prayers or appeals to certain saints, and sometimes small religious medals or holy cards would be included. I accepted all these with the same affection with which they had been sent. Even the religious medals felt like talismans of love. When we talk of cancer, we use the language of war. We speak of people winning or losing their battle with cancer. We talk of strength and courage and bravery. Sometimes I found this very helpful. For much of my treatment, I imagined my body as a warzone. I saw the lymphoma as an imperialist invader that had breached my borders and had expansionary motives. Every time I lined up for a chemotherapy session I thought of the chemicals as thermonuclear warheads being dispatched with ruthless military efficiency to push back and defeat this invader.Chemotherapy is a cocktail of potent chemicals and each cocktail has its own acronym depending on its particular components. My chemo cocktail was called R-CHOP, and I loved the sound of it. It had the ring of a deadly karate move, the kind of single, vicious kick that can break an opponent’s neck, which is exactly how I wanted my drugs to work. My treatment would involve six rounds of chemotherapy, each a fortnight apart. My first session extended for almost seven hours.
As I walked into the ward, I was again assailed by its clinical miasma of sickness, and again I rebelled against the idea that I had any place here, wanting to flee as soon as I walked in. I felt a great unfairness about this disease, that there was some injustice in its arriving at my doorstep. Settling into a large chemotherapy chair, I looked across at a young woman opposite me, her mother sitting beside her. As the nurse prepared her drugs, she was asked to state her name and date of birth. As she spoke, I did the calculation and realised that she would turn eighteen in two days’ time. A cold reality hit me. If anyone didn’t belong in this ward it was this young woman, who should have been out buying a new dress and preparing for her birthday party. My self-pity evaporated as I felt a sudden rush of gratitude for my fifty-three years of healthy life, for my own happy eighteenth birthday party and all the ones after it, for the chances and opportunities, the fun, the anger, the fears, the success, the failures, the sheer remarkable life of it. I gave a quiet thanks that it was me being hooked up to the bag of chemicals and not one of my sons. That I was not, like this mother opposite me, watching with terror and sorrow as one of my children was treated. Each chemotherapy session was a long and exhausting process of refilling my body with deadly chemicals. I was reminded of just how toxic they were at one session, when one of the intravenous tubes split slightly and the chemotherapy drugs dripped onto the floor. As soon as staff realised the problem, they cordoned off my treatment area with tape marked ‘toxic spill’ and suited up into full-body moon suits in order to deal with it. It gets harder and harder to front up for each chemotherapy session. You know with each session how awful you will feel, how the illness and the fatigue will last for days and how it all gets worse every time you do it. As my treatment progressed, I often felt that I just couldn’t face one more session. As each treatment day loomed, I would find myself using the language of war like a mind trick. Telling myself that I was entering the combat zone, that I was deploying weapons of mass destruction against the cancer, that the enemy didn’t stand a chance, was a helpful psychological ploy to get me back through the door and back on the drip. But all this talk of battle and combat was also unhelpful. I was struck by the constant references both friends and strangers made to my strength and resilience and their belief that this would help me conquer the enemy. It is true that I am a strong person, but it is equally true that many very strong, determined people do not survive cancer. It is not because they are weak or lack resolve, or that they do not fight hard enough or are not positive enough.
Anna talks to Lisa Wilkinson about her battle. (Post continues after video)
Surviving cancer is about many factors all going your way, like finding it early, like having a cancer that is treatable, like not having other health problems to complicate things, like the drugs working on your particular tumour, like living in a place that has good and affordable cancer care – and there are many, many more factors that affect survival. It’s not quite a lottery, but it felt to me that it needed as much luck as it needed strength.
At the end of it all, I can say that the language of love is just as powerful as the language of war. Having spent so much of my life out front, being the one who helps, the one who makes things happen, cancer forced me to stop, to wait and to let others do things for me. At first, this was a hard lesson. I did not want to be weak or needy, and I found it hard to ask for help when I needed it. But help came anyway. It arrived over and over again in many tender ways, and even now, more than a year after my treatment, this feels like the real truth of the experience. Help came in the ever-comforting form of food. My friend Lily in New York, knowing that I would not be able to eat much, sent her mother’s recipe for ‘Jewish Mother’s Chicken Soup’ to our mutual friend Audette in Sydney, along with instructions for making it exactly right. Audette, by her own admission no chef, spent whole weekends making this soup, spooning it into containers and driving it across the city to store in my freezer.Lily’s mother’s recipe is centuries old. It has survived pogroms, Nazi death camps and international migrations and came to me, via Audette, with generations of maternal solicitude. There were endless days when this soup was all I could eat. I came to think of it as having magical powers. Our friend John, who understood that even when I could eat I could barely face the smells that came with cooking, offered to cook us meals. On one occasion, a misunderstanding almost derailed this kindness. Greg and I pulled up at his house only to find John and his wife, Sabina, packing up their car with all the food and pans and utensils needed to cook for me at our home. Thankfully, our paths crossed at the right time and we helped them unpack the car and enjoy a meal at their home.
When my mouth filled with ulcers and it hurt to eat almost everything, Greg drove into the cold of Sydney winter nights to find me the city’s best vanilla ice-cream.
Help arrived too in a myriad of considerate gifts. When my Brisbane friends understood that great literature was beyond me and bought me subscriptions to glossy magazines instead, making me feel like I was at the hairdresser, even when I was without hair and had no need of one. When they flew to Sydney to be with me on my birthday. When Sabina bought me the box set of Friday Night Lights and introduced me to Scandinavian television dramas; when she knitted with me and bought me new wool. When I unwrapped the unexpected parcel from
Ros Kelly in London to find a beautiful red cashmere sweater to keep me warm. When friends filled my email inbox with jokes and cartoons and crazy, hilarious things they found on the internet. When my sons, my brave young men, brought card games and a Scrabble set and sat with me through chemotherapy.Help came with the friends who sat beside me in the chemo ward, who talked and didn’t talk, who didn’t care if I talked, who let me sleep and drove me home. It came in phone calls and cups of tea and knitting patterns. It came when I asked for it and when I didn’t, when I knew I needed it and when I didn’t.I wondered how anyone did this alone.And help came when it was time to confront my impending hair loss. My doctor warned me that chemotherapy would makeme lose my hair. Chemotherapy works by coursing through thebody and killing cells that are reproducing at a faster than normal rate. Like all weapons of mass destruction, it is an indiscriminate killer. As it mowed down my cancer cells, it would take outother rapidly reproducing cells as collateral damage. It would take the follicle cells of my hair and the lining of my stomach and my mouth, among others. I felt deeply, instinctively fearful of being without a head full of hair.
The first images that came to mind were of my boys when they were very little. As yet another round of head lice swept through their childcare centre, their father took them to the barber. They returned sporting number-one crew cuts. It mattered very little to them, and was a matter of practicality for Greg, but the sight filled me with horror. I was stunned by how different they looked and how the sudden removal of their hair had stripped away something unique and precious about them. Gone, the gorgeous red locks of my eldest. Gone, the spiky brown mop of my youngest. For me, the sudden exposure of their pale scalps made them look sick, raw and dehumanised like new army recruits or Holocaust survivors. I was not happy that day, and I was now fearful in remembering it.
The best advice was that a combination of good hats and beanies, along with a wig for more formal occasions, would get me through my baldness. I’d also been advised to visit a wig shop before treatment started, so the wig experts could see my hairstyle and colour before any damage was done. With some trepidation, I’d headed off to The Individual Wig on Oxford Street with my friend Dee Madigan, whom
I could trust to be brutally honest. At The Individual Wig, assistants Cheryl and Bridgette brought out a series of options, everything from long, wavy black hair to a short spiky blonde look. Dee pursed her lips and vetoed every one of them until we settled on something almost identical to my existing hair. As I sat there, listening to these women advise me and joke around, I was struck by the fact that they did this every day. Cheryl and Bridgette, and others in shops just like theirs, held the hands of cancer patients as they confronted yet another scary moment, easing the fear as best they could. Their easy charm washed over me like a tonic. I had walked in full of worry and walked out smiling, as so many others must have done.
In the week after my second round of chemotherapy, great chunks of my hair began to fall out. It fell into my food, it fell into my mouth as I talked. It left large bald patches as it fell. It was time. My hairdresser, Bruce, generously offered to keep his salon open after closing time so that I could have the remaining strands shaved in private. Deciding that private was good, but lonely was bad, our friends John and Sabina joined me, Greg, Oliver and his girlfriend at Bruce’s salon for the unusual social event of champagne and a shave. No woman gives up her hair and all that goes with it – the styling, the colouring, the dos – with ease or nonchalance. But my fear was more visceral. I remembered again those images of death camp survivors, new army recruits and prisoners and knew that our hair and what we do with it is a big part of defining our individuality; it distinguishes us from each other in a unique way. To shave someone’s head is so often the fastest way to strip them of their distinctive individuality and humanity, to diminish, shame and humiliate them. It was this that had made me recoil when I saw my young sons all those years ago, and it was this that I feared now. That in shaving my head, I would lose something much more precious than my hair, that somehow I would lose some essential part of me. But the jokes of my husband and our friends made for a very different event from the one I had feared. Having your head shorn as an aggressive act of dehumanisation is vastly different from what surrounded me that night. I left looking like an egghead but feeling cared for, protected and loved. I had hoped for a result close to Sinead O’Connor or Sigourney Weaver’s Ripley in Alien 3, both of whom made bald look sexy.
Regrettably, I looked eerily like my younger brother and my husband, both of whom have number-one cuts to manage creeping natural baldness. Nevertheless, it was not as bad as I had feared. Months later, as my treatment came to an end, I was invited by the Australian Women’s Weekly to join a number of other Australian women for a story in their eightieth-anniversary edition. I was pleased to be included and went along to the photo shoot with my scarf and wig, hoping for the best. After almost two hours in the studio, the photographer asked me if he could shoot me with my head uncovered. I was very reluctant, but the Weekly promised not to use any photo without my permission, and I thought, if nothing else, it would be good to have a photo of this big event in my life. After the shoot, the Weekly’s editor, Helen McCabe, called to tell me that she was looking at the proofs and the bald photo was the standout. Again she promised not to use it unless I agreed and invited me in to view the proofs myself. I went along to view the photos with a lot of scepticism. Of course, I understood why the Weekly would want to use this photo – it would make headlines, there were no other photos of me bald and it had shock value. However, when I looked at the proof sheet I could see what Helen had seen. It was a shock to see, but this photo was the honest photo. The wig looked fake,the scarf covered me up, but this photo said loud and clear ‘This is what cancer looks like.’ We all know what bald men look like – we see them every day in our families, in our workplaces, our pubs and our streets. Yet there are thousands of women, of all ages, every day, grappling with their scarves and their wigs as they deal with their treatment and their baldness, and they are all hidden. Helen and I talked it through from every angle. I worried that the Weekly’s talented make-up artists had made me look more glamorous bald than I was ever likely to look when my hair came back. We both worried that we might offend some patients whose treatment was not as effective as mine. In the end, Helen showed the photo to her mother, who was about to undergo surgery for breast cancer and had months of treatment ahead of her. Her response was overwhelmingly positive and she told Helen that the image made her feel stronger about what she had ahead of her. I took a deep breath and gave my consent to the Weekly to use the photo.
As predicted, the photo received a lot of news and media attention. I kept a low profile and gave no interviews about it. I thought the photo and the article, which was written by the talented Caroline Overington, said all that needed to be said.
More surprising was the public reaction. Once again I received cards and letters, particularly from women, but also from their husbands, boyfriends and fathers, all grateful that I had lifted the veil of secrecy on this issue. Despite my reluctance, this photo had a powerful effect, especially on the many out there who have experienced chemotherapy themselves or supported a loved one through it. It continues to draw comment from time to time and I’m very glad I overcame my own vanity and shyness to go public with it.
Chemotherapy slows your life down to a glacial pace. At first,I saw the months of treatment stretching out in front of me not quite as a holiday, but as a kind of time off work. I had imagined reading, knitting and gardening. I could never have imagined the days and days that felt like walking through treacle, the dreadful, slow-moving, do-nothing days when even holding a book was beyond me. Once again, I found myself thinking about strength. Without doubt, a course of chemotherapy is a test of physical strength, but my experience of it didn’t match the language that people were using about being strong. I knew they meant something more than physical fitness; they were urging me to reach for some inner resilience, a combination of courage and grit and a steely emotional determination not to fail. I know what it feels like to summon that kind of strength and resolve, and this was not like that. For me, the experience was closer to that of childbirth in the sense that, despite the pain and the exhaustion and the hugeness of it, it’s not optional. I know I’m not the only mother in the world to have contemplated leaving the delivery room and giving up on the whole event halfway through. But we all know that our baby and our body and the whole messy birthing business can’t be left behind in the birthing suite, so we grit our teeth and keep going until it’s over.
This demands a physical strength and endurance that most of us don’t know we have until we experience it. I certainly felt the need for physical strength as I endured my cancer treatment, but I also knew that I was not in an optional situation. Of course, it is possible to opt out of cancer treatment, unlike childbirth, once it has begun, but the alternative is just as unthinkable as walking out of the birthing suite. The times when I’ve had to dig down and call on my reserves of that different kind of strength are the times when I’ve faced tough and difficult things that were optional, when I consciously decided to take on something that I didn’t need to, when I could have taken an easier path but chose not to. When I decided to run for parliament, when I took on the churches and established a royal commission into institutional child abuse, when I walked onto the stage to face the angry mob in Gympie, when I put my hand up to be premier, when I took on the leadership of our floods and disasters, I had to consciously reach for courage. Every time I’ve reached for this, I’ve felt the weight of it and felt myself grapple to balance the load of it.
In choosing chemotherapy treatment, I was choosing to live. That was the easiest of choices. It didn’t require strength or courage; it barely required any thought. In my head, I’m about twenty-eight, maybe thirty, years old. I’m much older, of course, and the mirror regularly confirms it, but I don’t feel it. When you think you’re twenty-eight, choosing life feels like the easy path. I think this is why my diagnosis shook me so much. I felt healthy, I felt young and I was ready for a lot more life. Enduring chemotherapy, losing my hair, and coping with the many side effects were all a cheap ticket price for another shot at life, and I was happy to pay it. It’s a cliché to say that facing death makes you see life differently, but it’s a cliché because it’s true. I have heard of some cancer patients saying their cancer was a gift. They say this as a way of capturing the difference their cancer made to their life, how facing death made them grab life in a new and more deliberate and meaningful way. I do not think of my cancer as a gift. I wanted to be rid of it every day of my treatment and hope to live the rest of my life and never see it again. But it is true that being sick did make me stop for longer than I’m used to, and in so doing to see the value in being still and in taking time. After years of living life at an overwhelming pace, this was a lesson worth learning and maybe a lesson that I had to learn the hard way. As four months of treatment came to an end, I started climbing the long hill of recovery. I had another PET scan a month later, and this time I was given the all clear. I will have to return for regular blood tests for five years, but I have emerged healthy.Healthy, new and changed again.