In Danger

by Josepha Dietrich

  A corridor away a nameless, faceless chemist read our vital statistics and mixed a chemo-intoxicant tailored to us. Each of us sat with the slow drip of hope that what we were going through would cure us.

  Plugged into my chemical infusion I heard soulful music by Joni Mitchell playing on another patient’s CD player. The patient was Mum’s age. I heard my mother talking again.

  I spent most of my science degree in my room painting, Mum would say when we wandered into conversation about the life she had before me. As a post–World War II English baby Mum benefitted from a free and supported education – a saviour for bright working-class people.

  I wasn’t allowed to study some of the harder sciences as a woman, said Mum. So I did biology, zoology and botany … the stupid things women had to fight to do. In 1960s Sheffield women in chemistry laboratories had to wear stockings and a skirt. I addressed the union, got a petition going and was then granted permission to enter the classroom wearing protective slacks like the men. The noxious fumes melted our nylon stockings off anyway.

  I really missed my mother that day – and any day I remembered her feisty nature and her campaigns for women’s rights. She too was once a young woman with a life ahead of her.

  My son would never meet the grandmother who adored him even before he was conceived. A month before Mum died she wrote a letter to her grandchildren. When we talked of my future we imagined I’d have two children, not one. In her letter she told the imaginary two children of my future how to make a paper mat, a lesson she’d learnt from her time living in Nigeria. In the early 1970s my mother was in voluntary service abroad, teaching science and English in a hut full of children of all ages. In the A4 exercise book Mum wrote in for her grandchildren she said:

  … it is best – I think I have learnt – not to make your mind up that only one thing is right. Actually the world is always changing and so are you – so each day, each moment is the time to decide what is right then.

  Here is a poem I wrote about all that:

  The Meaning of Life

  The meaning of life is really quite simple

  One minute you’re up –

  The next you’re a pimple.

  It ain’t that ‘they’ hate you,

  And it isn’t all fate

  It’s just that the world’s fishing

  And you are the bait!

  My mother was an only child because she was adopted and her adoptive parents couldn’t afford to have any more children. I was an only child because my mother and father separated within a year of my birth and my mother never had the kind of stable relationship again that would have allowed for another child, and she wasn’t in a financial situation where she could raise two children as a sole parent and give them the kind of life she’d want for them. I shone as an only child of an adoring single mother. My father was also an only child, because allegedly his parents only ever conceived once. I too will have one child – to conceive and bear another child would be to play Russian roulette with my oestrogen. Too much woman can kill you, I now knew.

  Three generations of only children whose parents wanted more.

  Throughout my experience of breast cancer I read about other people’s journeys, for want of a better word, with cancer. The idea of the self is stripped, ripped, dissolved when you’re going through chemotherapy. What you once did is no longer; what you are is surviving day by day, running the gauntlet as ghosts of the dead reach out to trip you up. Come die with us, they say.

  The Bronx-born memoirist Vivian Gornick talked of the idea of self – the one that is shaped for the reader as a story progresses – as the organising principle of good memoir. In The Situation and the Story: The Art of Personal Narrative, she writes that the question being asked in memoir is: ‘Who am I?’ Who exactly is this ‘I’ upon whom turns the significance of this story-taken-directly-from-life? On that question the writer of memoir must deliver. Not with an answer but with depth of inquiry.

  The awareness of even having a self was challenging during this period.

  My mother, alive and dead, helped me to access my selfhood. My mother’s mothering gave direction – shaped my life – as my devotional love for my son was shaping his life. She taught me to examine my actions and reactions. I didn’t always welcome this training in self-assessment. I didn’t always like what I saw.

  Underneath our raised Queenslander were boxes of memorabilia. In one of my clear-outs I picked up an old diary of my mother’s and opened it. Mum’s familiar fast-flowing script was there. It travelled at 45 degrees across lined pages and turned into thought bubbles and spidery plans. I must stop letting Josie take responsibility for my life and in turn stop her turning to me to tell her what to do, she’d written. I shut the black A4 diary and dropped it like a hot potato. It fell onto the dusty concrete.

  The kind of house I lived in was typical for our inner-city suburb. Herston sits like a retro chair beside the modern sofa that is Kelvin Grove: a suburb of students, renovators and people inhabiting old buildings that’ve seen too much of life. Herston’s elegantly shaped Queenslanders recall a time when the backyard fence wasn’t visible from the back door. A 100-year flood came to the suburb in 1974, and then again 37 years later in 2011 (early for its century). When the floods burst the banks in the city and surrounding suburbs it went on to create an inland tsunami, changing many people’s lives: from short-term blackouts to deaths in the family.

  Most homes in Herston sat on high stilts and their occupants lived on the top floor, due to its history of going under. Those who had dared to build in their underfloor space to make a cheap third or fourth bedroom would risk losing everything in it to a mud surge in the 2011 floods.

  When I witnessed another builder’s truck outside a neighbour’s home I heard the experienced builder with scars on the back of his hands say: Stuff the termite-caps, you try fishbowl proofing an entire floor, mate.

  My mother had been right. I’d relied on her as the final judge on my decisions. Instead of studying sciences alongside psychology with a secret goal of switching to medicine later, I took women’s studies on my mother’s advice. This sliding-doors moment wasn’t her responsibility, but mine. I wasn’t honest with her or myself. We’re each our own best expert, I guess. We know the answers to our questions, even if we refuse to acknowledge it.

  This revelation hung in the dull air of under-the-house. My heart was beating fast. I picked up the book again and tried another page. Mum talked of being lost, so very lost. This was the darker side of mothering my mother: that deep, cellular task of being responsible for her during my life and until her death. The truth of this light-bulb moment of my mother and our co-dependency was similar to Gornick’s, but with Gornick she often hated her mother whereas I always loved mine.

  In Gornick’s Fierce Attachments, she recounts how her mother is absorbed in her own grief after the sudden death at 46 of her adored husband, her raison d’être. The bubble of her mother’s grief played out for the rest of Gornick’s childhood and adulthood. The mother’s heightened state of pain, acted out daily in long periods on the couch, whittled her life away in depression – smothering Gornick’s lived life with a mother who existed in abstraction. Decades later, they would end up walking through Manhattan together, their conversations filled in turn with laughter or fierce anger. They would discover things about each other, like the time they both spoke about the abortions they’d had. Gornick’s mother had had three during the Depression. After one, she’d woken from the anaesthetic delivered by a low-grade doctor in a basement apartment with his penis in her hand.

  I wanted to be rid of my mother’s burdening book. Its personal, deeply internal, anguished words were my mother’s and not mine to read. Mum never presented herself as inviolable to me but I thought of her that way anyway. I walked outside and threw the book into the recycling bin.

  The first thing I did on diagnosis was reach
out to learn what to do from women who had survived breast cancer, not died from it like my mother had. I contacted the Choices Cancer Support Centre, who put me in touch with another woman around my age who was a few steps ahead in her cancer treatments. Others’ stories were so vital, experiences I could deeply relate to.

  With three friends I formed a support group called the Right Wingers, because we all had breast cancer in the right breast, and planned to have a mastectomy (or had had one already). I also attended Choices’ support group for young women with breast cancer. For our Christmas in July night I’d sat near two other women my age, also with only one child, who’d similarly made the decision not to tempt Ms Oestrogen and conceive again.

  The room was plain and made specifically for groups coming for dinner. We had a choice of turkey or chicken. I chose turkey, which was dry, but I wasn’t there for the meal. All the women’s eyes around the table were bright and alert to what the others were saying.

  Opposite me was a woman who’d finished treatment a year before, proudly showing pictures of her attractive bald head. She was a surgical nurse and acted as our interpreter for the medical lingo of breast cancer pathology. To my left was an active breast cancer advocate who’d waved goodbye to cancer 22 years before. She said, At the time I thought I would be dead in a year, so I didn’t want to bother with building an extension to our deck. It remains unbuilt all these years later.

  The good-news story of the evening was a woman diagnosed seven years prior with oestrogen-positive breast cancer whose fertility eventually kicked back in during her late 30s. It allowed her to have the children she’d always wanted (she remained cancer free).

  Stories like hers placed a question mark on my decision not to have another child, but a doctor’s words always returned to match my own concerns. If your cancer is oestrogen positive, he’d said, why would you flood your body with the hormone through pregnancy?

  For women going through breast cancer treatments in Brisbane there was an active community of support. Apart from Choices, public hospitals offered social workers, psychologists and psychiatrists, and I could also access a breast clinic at Mater Private, where I went for my surgeries. In these clinics you get assigned a breast care nurse who takes your drains out after operations and is available to keep an eye on you post-operatively.

  During chemotherapy, my mood dipped and rose, and I went to a hospital-based psychologist. She did a mapping-out technique where I could step back and do a life review. It helped me to see the situation more clearly and some possible ways out of it: that chemo would end, better health would come, and which personal capabilities I could draw upon to meet Celso’s needs. After my designated six visits the psychologist referred me to a psychiatrist who specialised in breast cancer care. The psychiatrist visited me on chemo days so I didn’t have to make a separate appointment. Once the anti-depressants, prescribed for depression and to reduce hot flushes, elevated then evened out my mood, I could function well.

  Both of these professionals were free and based in the public hospital system. I would dip and rise again, but I had the mechanics at hand to get myself mentally competent when required.

  The breast care nurses I saw were attached to the Chicks in Pink charity, part of the Mater Private hospital. They raised funds for many things, for example bras for women after mastectomies, and portable DVD players for women in hospital. One fateful day my breast care nurse called at just the right time. I was sinking that day. At this stage Celso had no diagnosis but merely a collection of medical problems including gastro-oesophageal reflux disease, food refusal and delayed speech. He was going through a period of waking up and vomiting at 2 a.m., and remaining awake for several hours. He wouldn’t settle himself in the cot and needed to be held and soothed the entire time. He was still nasogastrically fed and required his nose tape changed every two days, which he fought, screaming throughout. B’s and my days were filled with darkness. B called it eating cardboard.

  How are you going? my breast care nurse asked.

  Okay, I lied. Tears sprang up into my eyes and I tried not to show them in my voice.

  What’s happening for you at the moment?

  Well … I said and proceeded to unravel what was going on and the depression that was riding my back at the time.

  Oh, I’m so sorry I didn’t call earlier. I’m so glad I called today, because …

  And my breast care nurse explained that she would arrange some private funding from the breast clinic for a nanny. The very weekend before calling me she’d met some women she knew (I never found out their names) who’d put on a successful fundraiser and wanted to give a portion of money directly to a woman with breast cancer in a difficult situation. Well, all us cancer patients were. But I was officially on a tricky, muddy tightrope of a path with a son whose path was just as tricky and muddy, so they donated the money to us. B and I were able to juggle B’s relatives and our friends around professional nannies so that for the first week of each chemotherapy round, when I was immersed in my toxic haze, B could work if he wished to and I could rest.

  I did, after all, have some guardian angels.

  After years of hard work, Celso’s path did end up smoothing out. I tried all the occupational therapists, dieticians, speech therapists and the evidence-based desensitisation tricks of their trades. Only physiotherapists’ advice helped. That treatment, plus commencing the Son-Rise process, meant that, after three-and-a-half years of not eating and in the midst of somehow getting salmonella poisoning, Celso pointed to the bottle of electrolyte hooked onto the mobile IV pole that followed him everywhere.

  You want some of this, darling? I asked.

  Celso pointed. I quickly put some into a sippy cup. The salty taste caused him to cough, but he appeared keen. I replaced the green fluorescent liquid with water and he allowed some into his mouth, then dribbled the rest down his chin.

  Within half an hour he’d tried a baby’s squeeze tube of organic mushed-up food. He had a bath to cool his temperature down, sitting on a stool because his bottom was sore from diarrhoea. His pale face and the dark shadows under his eyes made his lips appear lipstick red. Once out of the bath and wrapped up in a towel he dared tasting more on a spoon – tongue darting out.

  He had eaten and drunk nothing since he was seven weeks old, when the nasogastric tube went in, but in 24 hours he was nibbling a soft Anzac biscuit, sipping water (albeit with his tongue positioned out the side of the cup), and squeezing baby food into his mouth. To reinforce this he searched hungrily for food words in his books, getting me to say out loud all their names: tomato, sandwich, ice cream.

  My son and I followed parallel paths through the medical system: me to treat a known cancer and him to find out what to treat.

  The fourth round was on 28 August.

  Nausea. How I hated nausea. It destabilised me like nothing else. It came on and I was lost in Bass Strait, clinging to a life raft, praying for a passing ship to lift me off and away from the wet, cold ordeal.

  Friday was chemotherapy day. I had a routine. I’d walk up to the day oncology unit, sign myself in at the front desk then walk around to the nurse, a kind woman who could be stern when required. I let her know I was there waiting for my oncologist appointment then chemotherapy. Before either of these things happened I’d get my bloods taken via my portacath to check if I had enough oxygen in my red blood cells and if my white cell count was keeping up, among other things. My Fridays started around 7 a.m. and finished late afternoon. I enjoyed these days – not for the snake oil shunted into my heart but for having a day completely to myself, knowing my son was well cared for by someone else. Invariably I wasn’t sick yet so could revel in the time alone: I wasn’t a mother, I wasn’t a partner, I was my other self – a woman going through breast cancer treatment with an internal life.

  Once, when I was waiting to see my oncologist before going in to receive treatment, I sat in front of a
low table with outdated women’s magazines and peered around the packed waiting room. I had Randy Pausch’s The Last Lecture in my hand. He was a computer science lecturer at a prestigious American university and delivered a talk to his students on living that turned into a book. I wanted to read his take on setting goals to achieve your childhood dreams. But I didn’t have the space in my head to read or take in the words. A woman in her late 50s was brought into the waiting room in a wheelchair. It appeared she’d come straight down from the oncology ward. She was shaking. Her arms and legs were thin. And she had the unmistakeable grey soft curls of hair growing back after chemotherapy. She was vulnerable and ill. All really sick cancer patients reminded the rest of us who walked into the day unit how cancer could suck the body in and leave it deathly. It was scary to behold, but also humbling. She reminded me of my mother in her final days at the John Flynn Private Hospital on the Gold Coast.

  My mother had her own room and bathroom at John Flynn. Near her end, when I stayed close by, I returned in the evenings to put her to bed. Part of her nightly routine was to clean her teeth properly, have an English bath, pat on some talcum powder and likely attempt the toilet. During these occasions she’d rest her head on my stomach from her position on the toilet seat and we’d talk. Her hair was grey with soft curls. Her arms and legs were thin and shaky. She was ill and dying. In fact, we didn’t know she was so close to death then.

  In the first week or so she said, I feel guilty taking up this whole room. What if the nurses think I’m faking it?

  Mum was doing well then: alert, feeling okay, in good spirits. We regarded her stay as a private-health-funded hotel room while B and I prepared our new home for Mum to join us. I was organising Karuna, a Buddhist hospice service that provided outreach to the north side of Brisbane, to assist us in caring for Mum there in our home. I was also organising the transport of her possessions from her house in Lismore, which we’d sold.