In my hospital isolation I managed to read one book: a complex novel by psychoanalyst Salley Vickers about human frailty, The Other Side of You, which matched the heaviness in my chest. I felt as if my heart had sunk. You’d think when faced with such ill health from a bad chemotherapy reaction you’d want only light comedy, but I didn’t. I read works that helped me to access a language to describe my life.
The psychiatrist in the story had been traumatised by witnessing his brother’s death as a boy. Vickers explores survivor guilt, something that was playing at the edges of my consciousness about my mother and not helping her make better choices.
Have you dusted off the TV yet? I asked B over the phone. It was time for the Tour de France, which we watched, religiously, every year. It was the only time we brought in the television from our house’s understorey.
The first time we saw the Tour together we were lined up alongside many French people in Besançon, near the border with Switzerland, to watch the time trials. We’d driven south like mad things from our then home, a shared apartment in Strasbourg, camping overnight on the wet undergrowth of a forest close to the highway. Preceding the cyclists was a procession of floats. Our favourite was a huge, pink pig that rumbled by with a man throwing lollies. Hot croissants and black coffee were on hand, served out of stainless steel trolleys.
I looked away from my own TV and held the hospital phone close to my ear. Can you come in and see me? I asked.
B paused. I can’t, pea. I’m in lock-down mode. I don’t want to bring any infection into your hospital room – can’t risk a repeat of what just happened. Your father’s visiting you, isn’t he?
I wanted to see B, but said, Yes, Dad was here today. We talked about my grandfather and his World War II service.
My grandfather oversaw the making of second-rate tanks, in Nottingham, for the British government, who were sending their troops over to fight the Germans in their superior tanks.
How’s Celso going? I asked.
He seems fine with my mum. He’s likely missing you but getting a lot of attention, so nothing to worry about.
Are you doing the feeds?
Yeah, it’s all sorted.
How is he going down to sleep?
Mum’s got him in bed with her, which he prefers.
Tell him I love him. Let’s put me on speaker next time so I can talk to him. How are you?
Pause. Good, B replied.
All right, I said. The Tour’s starting, are you watching it?
Yep, about to have dinner, love you.
Love you, good night.
The Tour is a physical and psychological minefield of pain and intense joy for the participants; it’s about perseverance, which was what drew me in every year. American Lance Armstrong was famous for winning the Tour de France seven times, and then having the medals taken away. He also made a miraculous return to professional cycling after advanced testicular cancer. Lance’s cancer story in It’s Not About the Bike inspired me.
In his book Lance talked about his own emotional upheaval after finishing treatment, how gruelling chemotherapy was for him and how crucial support of family and friends was. He also ‘remained positive’ and focussed on his cure from advanced cancer. Later on, when he appeared on Oprah, his positivity to life and drugs appeared more like the arrogance and damaged functioning of a narcissist. However, if positivity was a door you shut on negativity, then mine was warped and let in the grey light of pessimism. Lance said that sometimes you need to support and reassure the people who are alongside you as they’re scared too. Once I was home I tried this out.
How are you going? B asked, patting his stomach, knowing I suffered lingering nausea from all the drugs during the hospital stay. It was the 17th day after my first cytotoxic hit. I had constipation, as well as gut pain that felt like hands were inside me trying to untwist my bowels.
I’m okay, you know – right now I’m okay, I said. How are you, pea?
Good! B gave me a bear hug and walked away to do something.
Okay then, mister, I thought. B had his singular focus switched on, a quality I admired and envied – a laser concentration over long periods of time without awareness of anyone or anything outside that focus, usually directed towards acquiring a new skill or learning.
I thought of Armstrong’s words to return the favour. I reassured my loved ones that as B and I rode the embattled River Styx that was chemotherapy, their support made a big difference.
As a family we had the luxury of being able to place everyone in different camps. B resumed work while his mother cared for Celso at his auntie’s house: a beautiful 100-year-old Queenslander with a grand frontage and a welcoming, quirky interior. My father remained camped in the local hotel. My sister had flown to Darwin to see old family friends and take a series of photographs as part of her entrance portfolio to study photojournalism. After the bustle of a busy oncology ward with its beeps, regular monitoring by nurses, scheduled meal times and doctor visits, I was home alone: in quarantine. This was done in a bid to avoid a repeat of what had just happened. The luxury was not unalloyed by grief. Knowing Celso was cared for was wonderful, as was the quiet time for recovery, but being separated felt strange and straining.
Twelve days after the first cycle I’d stood in front of the vanity mirror regarding my lank hair. I was alone, because B needed to look after Celso and his feeding regimen in the quarantined house. I would never shave my head unless I had to. I wasn’t one of those women who threw off their hair as part of trialling a different identity: Sinead O’Connor tough-beautiful without the feminine adornment of styled hair. I had been a forceps delivery. I have identical indentations on both sides of my skull. I figured my dented noggin would make a Frankenstein out of me. But the time had come.
I placed sheets of newspaper in the bath and leant over them. I chose a number three haircut. I worked my way from my ears inwards to try a Mohawk on top of my head before going all the way. Between each shave I’d stare into the new version of me emerging. When I finished I could feel the cool air on my scalp.
Punk, I said to myself in the mirror. The prickly hairdo was nice to rub.
In the third week after chemotherapy, when I was able to step outside, I walked to the local post office, which was nestled in the RBWH. I got many I’m-looking-at-you, trying-not-to-look-at-you stares. I had become a bona fide cancer patient.
The end of chemotherapy: what is a life?
Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his ‘Rinse the mouth – rinse the mouth’ with the greeting of the Deity stooping from the floor of Heaven to welcome us – when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.
Virginia Woolf, On Being Ill
My guts butterflied as I walked into the day oncology unit for my second round of chemotherapy. My oncologist was not on duty that day, so I got a young stand-in, who was fine-boned and very slight. It was shocking to look at this clearly bright woman and think of her as healthy. If she covered her hair with a beanie and sat next to me in the waiting room you would mistake her for a patient immersed in her own chemotherapy regimen. Her manner was brisk. In her office we talked about how nauseated I had been with the last c
hemotherapy session and my hospital admission from infection. I discovered I was meant to have taken steroids before the visit, but I hadn’t been told to. She decided to deliver the steroid dose intravenously before my TCH treatment.
It started out normally. I was eating a Greek salad that had raw onion in it. Is the onion making me light-headed? I thought, staring into the reds and greens of my salad. I was involuntarily drawing in bigger breaths of air. I’m just anxious: calm down. I straightened my spine against the blue padded-leather kickback chair and closed my eyes.
A nurse fitted my first hit of chemo, Taxotere, to the intravenous line replacing the steroids and saline. Okay?
I briefly opened my eyes and nodded.
Taxotere started and my breathing hammered in my chest.
Are you okay?
My eyes bugged and I shook my head. No.
The head nurse was called and a flurry of activity commenced. Put this under your tongue.
The Valium-type drug dissolved in my mouth while they fitted oxygen tubes into my nostrils and stopped all the medications going into me.
Just focus on breathing – you’ll be okay, instructed the head nurse.
I focussed on her eyes. I was shaking uncontrollably again. Nurses bundled me in heated blankets and took my temperature.
They thought I’d developed what’s called a ‘septic shower’, meaning when the nurse accessed my portacath to check my bloods in the morning some of the residual bacterial infection after my first chemotherapy hit might have got flushed back into my system. Once the reaction was under control the nurse started chemo up again. My oncologist’s stand-in was reluctant to alter the dosage, which seemed the right decision, so drugs were provided to mask my stressed-out body. I later asked my oncologist what had caused the stress response and she reasoned I was likely sensitive to the steroid dose, rather than suffering from a septic shower.
Chemotherapy was more gruelling than I could have imagined – even reading and hearing the horror stories didn’t prepare me for how it felt. It was the same with childbirth; no matter what women said to me there was no way of knowing until my body writhed with full-blown ripping contractions.
Once my body had calmed down from its shaking and my breathing returned, I distanced myself from it by closing my eyes and letting my ears lead me around the room. I overheard a conversation between an educated woman in her 50s, who was accompanied by a professional carer, and a country woman in her 60s, who had an attentive son. In my head I named the two women ‘Margaret’ and ‘Dawn’.
Margaret: I was supposed to go last November.
Dawn: Yes … they told me this year.
She turned her head to look at Margaret. The permed hair on the back of her head was thin; her scalp was purple-pink.
Margaret: It’s just statistics! Don’t believe the dates.
She readjusted her Japanese print blouse.
Dawn nodded. I don’t. I feel I’ll be here for some time longer.
Her son bowed his head.
Margaret: Me too.
I was reminded that there were tougher cases than mine. It was a dark place, chemotherapy. A death tendril touched me. I knew I wasn’t dying immediately of the disease, but the effects of the drugs in the first weeks after my two hits of chemotherapy let me know that the breast cancer business was deadly serious.
There was another side to being ill too. There were heightened thoughts and feelings, like the sadness of finally understanding some of what my mother had faced when she was ill. I hadn’t had the foresight to record her voice.
In my chemotherapy haze I stood back from the normal running of life. I observed others without experiencing the fast rush of get-to-work adrenaline. The comings and goings of daily routine were slowed down so that I noticed where my feet fell.
My mind kept returning to the idea of myself as a phoenix rising out of the ashes of my mother’s death, out of a cancer death. As I turned on my side to get relief from a constipated belly, the bony hips leaping out of my flesh were my mother’s. I was inside the last days of my mother’s life; I witnessed her frame inside mine and mine inside hers.
When my mother went into a coma the nurse put her into an adult nappy. Her best friend, Tess, and I rubbed oil into the sagging skin on Mum’s stick legs. We spoke to her as if she was conscious in the room and to reassure her she wasn’t alone, though she was alone in her mind. If hearing was the last sense to go then she knew of our presence.
My mother’s breast cancer was different from mine. She had lobular early-stage invasive breast cancer that was positive to oestrogen and progesterone. I remembered her getting the news that she was HER2 negative. The details were hazy, but I was driving her somewhere – either back to the Northern Rivers after seeing her overloaded and unavailable oncologist in Brisbane or on our way to the beach for a walk. When I visited, Mum always preferred it if I drove, and went up to the till to pay in cafés with her money. My mother had an innate shyness and a reclusive nature even though her academic life required her to speak in front of people and educate others. She often said, I’d love to live in a lighthouse. She had a framed picture of a man standing outside the bottom of his lighthouse with the one red door closed behind him. A heaving ocean with a wave that only sailors see has spilt around the structure and is caught at the moment it is about to return, merge and possibly swamp him. You can’t see how he’ll get out of the way of this wave.
It stung to recall our chats and driving times. We used to talk so openly on drives, our eyes to the front and our emotions easy. The loss felt even greater after the heightened intimacy of the car in the last few months of Mum’s life, as I drove her to regular shots of palliative chemo.
A dragged-down heart, similar in feeling to when I was hospitalised after my first chemotherapy session, was the best expression I could find to cover the loss of conversations with my mother about our favourite authors, books and theories. In the year I cared for her full time our conversations had no time for meandering through texts or our shared past stories. The ever present scorched our lives so fiercely; I was holding onto the hours with sharpened nails, and what required attention: medical, emotional and legal.
I can’t get Herceptin the miracle drug, Mum said after ending the call with her oncologist – the one whose nameplate sat next to my future oncologist’s in Wesley Hospital private rooms.
Why not?
It’s only for a particular kind of cancer. Mum sighed, and then shrugged her shoulders, keeping her eyes to the front. The positive side of that is Herceptin treats a more aggressive cancer, which I haven’t got.
This was the cancer waiting for me four years later.
That’s good. You don’t want an aggressive cancer, I replied without thinking.
No, it’s just I was kind of hoping to get the drug as it works really well at keeping it away. Mum scrunched her nose up and looked over at me.
Some cost for having a nasty C. Better to keep the one you’ve got.
I didn’t know what Mum was talking about at the time. The name of the HER2 protein didn’t register, only the drug, Herceptin. I received Herceptin with each chemotherapy dose and continued to get IV shots of it every three weeks for eight months post-chemo. It didn’t make me ill like chemo, and this alone would have been a real positive for Mum – something she would have considered if she had been HER2 positive, like me.
I held such different views of Mum’s decisions and thinking around cancer care after I was diagnosed. What I thought were clear-eyed opinions weren’t. I believe now that fear informed her choices more than an understanding of the reality of cancer in her breast and the medical intervention required to eradicate it from her body. Maybe Mum’s initial rejection of chemotherapy drugs but acceptance of Herceptin as an option was another way of skirting around the edges of conventional medicine. She was comfortable using medicine’s well-researched drug
s without the terror of chemo’s side effects: a half-in, half-out strategy. After my own diagnosis and reading up on my particular kind of breast cancer I had to acknowledge that my mother would have been profoundly disappointed after hearing her HER2 status was negative.
Sentinel node biopsies were in their infancy in 1996, so she didn’t have that option; only the full removal of lymph nodes under her arm and radiotherapy were offered, which would have likely left her with lymphedema (build-up of lymph fluid that would lead to swelling in the arms), so she’d had a lumpectomy only. The treating doctor suggested radiotherapy on top of surgery, but my mother refused it on the grounds that it hardened the breast tissue and could compromise healing, plus if it returned in that breast after radiotherapy a mastectomy would likely be the only option instead of another lumpectomy. She took the other route. The one that failed her. I only understood the degree to which she hung onto the chance of new cancer treatments in light of my now-lived experience.
By the third round of my chemo I had more of an idea of how to handle the anti-emetics and get through the nausea. It took approximately three to four hours to deliver my chemotherapy so the oncology nurses offered me a bed to lie down upon, usually near large windows that had metal shutters sandwiched between their panes of glass to make them dust free, and a warm blanket for my shrinking body.
By this stage in my treatment some form of scattered rhythm had formed: after the first week of ill health and extreme side effects from chemo, a glimmer of normality would return for the remaining two weeks. In these weeks, I cared full time for my son without assistance, and my health returned in a way I recognised wasn’t full health, but a functional health where I ran my life without a fogged brain and nausea weighing my movements to a snail’s pace.
Supine on my white bed I looked around and took in everyone plugged into their chemicals. It was a plain hospital room but held so much concentrated humanity. The atmosphere of many nurses, caring family members and visiting doctors in plain clothes made the feeling of being cared for sharper for me. The room was awash with cancer patients but we were safer from the disease than at any other time since diagnosis.
In Danger Page 5