To live with cancer was to grieve one’s former life, even when in remission. So too to witness a loved one die from the disease. Cancer scares people to the quick. It was not surprising that people gave inappropriate advice about alternative treatments. Though one person blamed my disease on my mental state, everyone else, medical staff and close friends and family, was truly sympathetic. It was just their tongues’ expressions of sympathy that sometimes got tied.
Mothering and cancer: is motherhood ever enough?
But it is a hallmark of the damaged that when it comes to their own desire instinctively, ruinously, they tend to court its opposite.
Salley Vickers, The Other Side of You
My mother was a ‘bastard’ child, conceived at the beginning of the Cold War in 1948. Her mother was a Welsh woman in her 20s studying stage design, and her father an Englishman named ‘Jim’.
A London working-class couple adopted my mother: Heather Mary Dietrich. Well, if she can’t walk then she’ll really need loving parents. Won’t she? said my mother’s adopted father. This was the folk tale told to me over the years.
My mother was born with a prominent bump at the base of her spine. The medical staff on the London maternity ward imprisoned her biological mother on the ward to comb old people’s hair. She had to stay around and make herself useful in case her baby was disabled and unplaceable. Mum ended up with one leg longer than the other. Her out-of-kilter hips caused her back to kink and required a chiropractor to clunk her spine into line. Later on I’d need the same.
My mother’s beginning would affect her entire emotional make-up. It was a branding for her: abandonment. Her sense of rejection at birth skewed her view when choosing partners. I once joked that she could walk into a room and pick the worst man for her in seconds. She laughed, because it was true.
When Mum reached her 20s she tracked down her biological mother and they finally met face to face in an English pub. My mother had ducked her head under the thick beam of a centuries-old pub and scanned the room. Through the cymbal and crash of drinks being served and noisy banter she’d spotted the only person who could be a relation. A woman with grey hair, soft skin and cautious blue eyes: her mother. The real one. The content of the conversation was a fast-paced summing-up of facts: this school, this course, this house. She left fantasising about what her life would have been if that mother had mothered her. To have had a connection of the mind growing up. She’d loved speaking with an educated and interesting mother, not one at odds to her. When she tried to discuss her biological mother, her adopted mother would collapse down the living-room wall, wailing. When she wasn’t a good girl her adopted mother would caution, We didn’t have to have you, you know.
You couldn’t breed out the Welsh retroussé nose. My grandmother’s nose was my mother’s, mine and my son’s. All of my mother’s Welsh line resided in Wales.
In light of the tendency towards breast cancer in my immediate family, my biological grandmother’s cancer-less status intrigued me. She’d undergone a radical hysterectomy after the birth of her last child, which might have saved her due to the oestrogen drop. Or, the tendency towards cancer was inherited from the unknown father, my maternal grandfather. Who knew?
Mum and I had many conversations about her being a grandmother and me a mother when I was ‘older’. You’ll marry, have two-point-five children and a Labrador, she’d say. I’d giggle, lower my eyes and a bubble would form above my head, with the image of a happy marriage that was mine. I did want this, and if I stood in the present and glanced around at my unwedded marriage I had the happy union of my imaginings.
Mum had a counsellor’s ability to listen, really listen to you, matched with a reverence for people and the human predicament. She went to the depth of the thing that you wanted to discuss, or she could spend hours on an intellectual conundrum. I felt valued and seen by my mother, who was my confidant and a soul-mate for 31 years.
What terrified me the most about my mother dying was that I might not be able to survive without her. I’d be marooned with all my blood-relatives half a world away. Abandoned in the adopted country. It didn’t matter that I was 31. These digits could easily have been reversed.
Mum and I would mooch in a café, drinking tea and conjuring up what kind of life I might lead as a mother. What would I do? What would my partner look like? There was always uneasiness when I imagined giving birth. When I was 17 and we lived in Canberra (Mum had to move there for a full-time job in government) I was diagnosed with polycystic ovarian syndrome (PCOS). My menstrual cycle had staggered into a half-life when I was 14, and though at the time we figured the low fat content of my ballet and gym body was the cause, it wasn’t.
PCOS is a shitty thing for a woman to have. Think of it as a spectrum disorder with the left side being manageable but the extreme end on the right being downright nasty. In brief, my ovaries were sensitive and overly stimulated. They produced excessive amounts of androgens through the release of too much luteinising hormone (LH) or insulin in the blood. In the menstrual cycle your LH does her thing, preparing the ovarian follicles to grow big enough for an egg to pop into them. The follicle later bursts and the egg goes down the fallopian tube. However, if the follicle-stimulating hormone (FSH) sheila at this critical egg-popping point gets all shy and doesn’t yell out loud enough for the LH to hear her shouting the words, Work with me over here, then your eggs don’t ripen.
What? says LH. I can’t hear you.
The sad thing was that my LH and FSH didn’t work well together. In some women LH has a hearing aid and gets what FSH wants and makes contact; in others they never connect. If your LH and FSH never speak to one another then you remain infertile.
At 17 PCOS scared the hell out of me. I did two things with the verdict: ignored its existence, and silently feared like hell that hair would spring up in unwomanly places on my body. I was on the left-hand side of the spectrum and didn’t suffer terribly with PCOS, but if you were on the extreme end you were obese, suffered from acne and hirsutism, with diabetes thrown into the mix, and you were likely infertile. Basically it was anti-beauty material, everything a developing girl would not want. It permanently fixed in me the idea that I wasn’t normal like other girls.
As an adolescent I had the vanity of Narcissus. PCOS didn’t do much for my entry into female adulthood. It destroyed the joy of a developing body in some ways, though in others not so – like my first sexual experience, which was easy, filled with lust (midnight cycles across town) and liberation. Despite that, because of PCOS traits I assumed I was somehow more masculine.
What really worried me was the infertility question. I figured nature’s joke would be that I’d have to adopt, after having a mother who was adopted, and it would be some sort of learn this lesson life experience for both of us.
My mother told me many times the story of my drug-free birth. A 24-hour labour of agony, which split my mother right down to her perineum thanks to forceps. I was also a month overdue. I’d been due on 1 April.
My narrow hips made me think I’d suffer a screamer of a labour like my mother. Plus, I could never imagine giving birth. I know, I know … no woman can until she’s in the throes of it. But in my life I’ve had visions of things I could do, a sense of my capacity, and I could never see myself giving birth. When I did have daydreams about it something dramatic would happen, like I’d haemorrhage afterwards (as I ended up doing) and appear to be dying, as in an Irish drama piece about a good Catholic girl giving birth in a cow shed on piles of hay. My husband would wipe his bloody hands on his work pants and lean his dark, curling head close to mine, crying, Don’t leave me, I love you so.
I also had waking dreams about my future ‘husband’. He’d appeared to me with a scarred face. B was in a serious car accident as an 18-year-old and sports a Harry Potter gash across his forehead. Maybe I did get these visions right?
As I was rendered menopausal by hormona
l treatment, the issue of my PCOS seemed to have disappeared. Result. I didn’t have to worry about hormonal imbalances of high oestrogen and progesterone; my chemical romance had put paid to these. I only had to wax body hair from my armpits or my legs every few months. Thanks to plastic surgery, I had the exact breasts of my choosing and I didn’t have to wear a bra under dresses or backless tops. Plus, I would never pancake. How good was this for a 36-year-old mother?
When my mother’s body was killing her, our roles reversed. I was mother to my mother. When I walked behind her flower-strewn coffin with a native Australian bouquet in my arms, tears streaming down my face and my chest heaving, I was her daughter again. Four years after her death when I was thrown by my own breast cancer diagnosis, I had Celso.
I bargained with some external power that I would be satisfied if I had the gift of life fully return after cancer treatment and that my reparation for that gift would be unfailing, uncomplaining motherhood. Prior to the diagnosis I’d taken it for granted that mothering a baby would be an intense phase of my adult life, and a situation that would ‘get better’ and change as my baby grew. I would go on, happily, to do other meaningful things with my life. But after diagnosis all I wanted was the motherhood role.
At times, before cancer, I wanted to straighten my feminist spine and roar: Let women stay at home with their children until school age if they please. As one highly intelligent and successful friend asked, But what do you say at parties when people ask, What do you do?
Where did feminism go wrong?
When my friend posed that question, Celso was six months old and still nasogastrically fed, refused to eat or drink, and frequently vomited day and night. He also required physiotherapy, occupational therapy, speech therapy and close monitoring by specialist doctors. So my answer to the question would’ve been: I’m a full-time mother. And sometimes: I’m a full-time mother of a high-needs baby.
To break down my response more fully I would have to say: One, I don’t go to parties. Two, when did we cancel out mothering like it doesn’t count? And if mothering doesn’t count then my answer to What do you do? would be, Nothing: right now I’m just a mother at home. On your curriculum vitae there are no spaces for how many children you’ve cared for or parents you’ve nursed. That space is left blank. The years of lost employment.
I wanted acknowledgement of a hard job done with love and no pay. But the irony was that, after breast cancer, stay-at-home mothering wasn’t enough for me either. I was as bad as my friend’s question.
Helen Hayward, author of A Slow Childhood, sidelined a successful career to care for her children until she was in her 50s. She nailed the feeling for me in an essay, ‘My Children, My Life’:
What credits my sisters and me in the eyes of the world, and to some extent our own, is the work we do on top of the families we raise. Every day, I pour as many hours into my family and housekeeping than into my writing and editing, yet I’m recognised only for what I do beyond the home … My children give me enormous pleasure and pride, a love so profound it escapes words. But my sense of identity and worth, and my inner buoyancy, stem from my work beyond them … We’re not content simply to put our children to bed at the end of the day and put our feet up until morning. We refuse to accept that love and ambition don’t go together: we’d sooner toe the party line that career and family are happy bedfellows than accept the awkward truth of how hard that is. Even if the price is to be forever on the go. Yes, we’ve sacrificed our free time. But at least, we tell ourselves, we haven’t sacrificed ourselves.
It was winter in Brisbane. The weather was perfect. It was possible to garden at noon without a hat, for instance. I pulled down the winter box of clothing from atop our old three-door dresser. I took out the clothes I wanted for the coming cooler months, and folded and packed my summer dresses and tops. I put away a few of Mum’s remaining clothes, clothes she made herself and took to hospital. On her favourite felt shawl, a faded green and lilac piece with wild snaking threads throughout it, a blob of toothpaste remained.
My mother brushed her teeth twice a day in hospital, leaning against the sink for support with her face close to the mirror, with effort. She still bothered to floss in full knowledge that she wouldn’t survive another few months and her teeth would burn out of her jaw at cremation. The blob was five years old. A memento of her last days in hospital. My hand flew up to cover my heart. Oh Mum.
Over ten years of recurring breast cancer my mother tried intravenous Vitamin C injections, an alternative chemotherapy from Germany delivered at a sophisticated-appearing centre situated across the beach in Manly, Sydney, psychic surgery, diets, practising a visual meditation where you rid yourself of your disease, and emotional work, believing the cancer might have roots in her deeply held sense of trauma as an ill-placed adopted child. She left her academic career in Sydney and moved to the Northern Rivers, a place she valued for its lifestyle and expanse of beautiful beaches and sub-tropical rainforest.
It didn’t work.
Like some death knell it struck again every two years. In 1997 she had recurrent local disease in the same breast and underwent another lumpectomy. Again she refused adjuvant radiotherapy. That year we spent Christmas with friends in Canberra. The healing wound became infected and opened up on Christmas Eve. I packed the wound with gauze as nurses had shown me to do, but the situation was beyond my abilities. Mum and her best friend, Tess, spent the rest of Christmas Day in accident and emergency with a residential doctor who appeared to be 11.
In 1998 the cancer reared up again around the time of her birthday – same breast. This time Mum had a mastectomy and her lymph nodes removed. Prior to surgery I’d called a ‘meet’ of all her female friends for her birthday, and after a yummy fusion meal in Byron Bay I went around the table and asked everyone what they thought Mum should do: lumpectomy or mastectomy. Mum had agreed to follow her friends’ advice even if she didn’t want to. The hands-down decision was for a mastectomy. Mum’s health insurance hadn’t kicked in yet so I did a call to alms with all our friends and family, and generated enough to take the sting out of the operational costs of surgery in a private hospital. As Mum’s oncologist was private, so too was surgery.
My mother had non-typical secondary breast cancer – it had metastasised to her ovaries and part of the addendum of her stomach. The surgical response to this was a radical hysterectomy. The year was 2000. After surgery she commenced hormone therapy with Letrozole (another aromatase inhibitor).
In 2003 it went to her bones. At this point it had spread to the lining of her skull.
In 2004 it went to her liver – the seat of her terminal diagnosis. My mother’s oncologist put her on a low dose of Taxotere and Adriamycin from August 2004 to September 2004. And again – with a different regimen – from November 2004 to January 2005.
In 2005 she underwent several months of palliative chemotherapy under a lovely palliative care doctor based out of Greenslopes Private Hospital (up until this time Mum had been seen by doctors at the Wesley Hospital) who reduced the tumour in her liver and doubled the length of time she’d been given to live, which was roughly six months.
When my mother was first diagnosed she read a lot of the cancer literature. She shoved the German alternative chemotherapy trial results under the noses of her oncologist and treating doctors. She wanted them to see there were alternatives to their wisdom.
In consultations with specialist doctors I took notes while Mum talked. I asked a few questions, but overall I remained in the role of dutiful daughter. At 22 I didn’t seek out the cancer literature myself. I trusted my mother to know what she was talking about as she always had – or so I’d believed. But in hindsight, and with the knowledge gleaned from my own illness, I’m amazed at the choices she made. At the way she played Russian roulette with her own life. Of course, she didn’t see it this way.
As I’ve said, I believe fear played a huge role in directing
her away from conventional medicine. When you walk into an oncology unit and get plugged into cytotoxic drugs, you are truly a cancer patient and your life is on the line for all to see – by you, most clearly of all.
I helped Mum in post-surgery recoveries, but I didn’t live nearby. I would ultimately return home. If I’d stayed closer geographically, would her decisions have been different?
When we talked about her impending death she said that I got as close as possible to knowing her without being her. She trusted me to give doctors the okay to increase her morphine or to give instructions to turn off a life support machine, if it got that far. And it did. Three days before Mum died, two doctors talked to me outside her room.
We’re going to increase the morphine to reduce your mother’s discomfort. Do you know what this means?
They both looked into my eyes for comprehension. I knew exactly what this meant. Euthanasia is hotly debated in Australia. Officially it isn’t used, but in practice it is, mainly for those in hospital dying. Doctors regularly assist them to go without pain, and more quickly.
Do you know what this means?
Yes, I do. Okay. Yes.
Your mother will slip into a coma, which’ll likely last three days, then her organs will close down and eventually her lungs will stop working. Soon after we increase her morphine she won’t be able to speak with you. If you need to speak with her before she goes into a coma, you should do it now.
In Danger Page 11
