When shows break up, what but One’s-Self is sure?
Walt Whitman, ‘Quicksand Years’
In 2016, seven years after my breast cancer diagnosis, I returned to the Motherland. The last time my feet had touched British soil my mother was alive, I lived in France, my relationship with B was new and delicious, and there was no baby and no cancer in my breast. It had been 13 years. The time before javelins and arrows rained down.
I stepped onto British soil motherless, but not orphaned. I was back in the country where I was born and lived my early years. All my relatives were here. So too my oldest memories. At four trying to tie my own shoelaces on the steep stairs that led up to our second storey where our two bedrooms were: my mother’s and mine. My mother had purchased our attached home when buying houses as a single mother in Brighton in the United Kingdom was possible. It was one among many row houses on Baxter Street. Mum had received the down payment on our property from her boyfriend at the time, Tony. He’d generously donated one month’s interest from his trust fund to Mum to secure a home for us. Tony was the son of a wealthy Sephardic Jewish family who’d made their fortune in the cotton industry. I still have all the hats from around the world that he gave me (a collapsible top hat to go under church pews, an original pith helmet from South Africa, a public schoolboy’s woollen striped hat for cricket …). Early in their relationship he’d taken her to New York to meet some of his friends. She told me that she’d been so blanketed by her own insecurities as the working-class girl from Eastbourne, and by her sense of inadequacy among his connected friends, that she’d failed to enjoy herself or be herself.
A sense of connection was always present with England. It took until I was 22 to feel Australian. Up until that point I felt English-Australian. Then I’d return to England to visit family and feel Australian-English. Never quite two feet on the soil where I was standing. Identifying as Australian took a while, but it was a relief when it finally arrived.
I’d reconnected with my grandmother by reaching out through email. She’d responded and we renewed a dead relationship. Like many adoptee stories my mother’s relationship with her birth mother wasn’t simple: a cellular fear of further rejection, of not being ‘enough’, the complexities of intense familial connection without the lived years to back it up. The fallout from their rupture in communication was that I too was disconnected from my grandmother. The second wounding for my mother of a failed relationship with her birth mother was laid to rest, before her own body was, in an exchange of letters and forgiveness the year my mother was dying.
My mother’s mother stood in the entranceway of her 18th-century cottage, her pure white hair stark against the stone wall. It was a Welsh day: damp, sky dark with rain, with a strange muted green light, like reeds under water.
My grandmother stepped into her home, with its antique furniture and raging fire. It was a visitation from another world. I burst into tears. Sorry, it’s just I hadn’t thought about how much you looked like her, I said. It was another sliding-doors moment. This is the face my mother could have had. If she’d lived.
My grandmother didn’t raise my mother but she’d developed the same purse of the lips, a similar expression in the eyes.
I’ll make a cup of tea, my grandmother said. I’ve got cake. Chocolate, like you like.
I was so grateful. At the end of a world journey I’d returned to a place of familiarity – my mother’s half-biology.
I was speaking with the woman who was my origin story. She met my mother 25 years before I did. I wanted to sit across from her and talk for weeks. I hadn’t seen my grandmother in 18 years.
My grandmother’s six brothers died not knowing their niece – her lost daughter – had found her. Only four of them knew their sister had a girl adopted out. A secret hidden, but heavy: passed around the dinner table in keep quiet glances between the brothers who held the secret to keep it from the ones who didn’t. These strangers tied by blood to me knew the shadow of my mother’s existence but not her substance.
I’ve put Heather and you in the timeline now, my grandmother said.
I hadn’t travelled half a world to hear these words but they mattered all the same. My grandmother had researched and recorded her Welsh genealogy. In the table-sized printout of her work my mother and I were initially left out of the family tree. According to the records, we didn’t exist.
I’d travelled to Wales because I wanted to sit across from my remaining matriarch before she died. At 89, she was sharp. During our three days of conversation at one point I couldn’t find the word for the musical instrument my brother from another mother, Alexei, had played the day before in his family’s Devon home. You mean pianola? she’d said without pause.
The question I wanted an answer to most was, Who was my grandfather?
I didn’t get the answer of his surname, but I got others. Jim went to complete his leaving certificate with the RAF in Brighton during World War II, which is where he met my grandmother, who was doing a secretarial course. Together they created my line, but all trails of him have grown cold.
At one point, I walked up the winding, single-width stairs onto the landing outside my grandmother’s own bathroom and bedroom with its view of slate, sleet and silence. Her six brothers’ photographs lined the whitewashed walls. All of them were in their uniforms, young and handsome: RAF captain, second lieutenant in the army, wireless officer on tankers to a Merchant Marine. They were all dead. The last brother to die had been alive a year prior. He’d published his swansong about his journalist work as a travel writer, The Road to Fleet Street, just before he died. My grandmother was the last one standing of her once large family.
I am forever grateful to that police doctor. My grandmother looked down into her cup of tea.
I too looked down into my teacup, thinking about what face had been reflected back at my grandmother. I imagined a pot-bellied straight talker. Gruff in manner, but with a kind heart. A police doctor doing what he thought best for this young woman across from him. He would have served in the war only three years prior.
You’re a fit, healthy young woman and you shouldn’t think about an abortion, he’d said. Go ahead and have the baby, but take more care with your love life in future.
My grandmother and I also talked about her brother, who was in the Metropolitan Police Force himself, arranging for her to consult this doctor about obtaining an abortion in the early stages of the pregnancy. I owe my life to his words and my grandmother’s decision. In 1948 abortion in the United Kingdom was illegal unless, according to the Preservation of Infant Life Bill, it was detrimental to the mother’s health.
Returning to the UK was another victory lap, similar to the New Zealand trip that B, Celso and I took after my chemotherapy finished. This time my head of hair was back and I’d survived the crucial five years post-diagnosis cancer free. Chemicals maintained my body. The current wisdom on the oestrogen suppressor Arimidex was women should take it for ten years. I had three years to go with it in my veins every day, leaching my fat of oestrogen.
At the ten-year mark you’re not cured but you join the rest of the population’s chances of developing the disease – approximately one in nine for women in ‘developed’ countries like those in North America and western Europe. The rate in Australia is actually one in eight.
As the age of people in developed countries increases, so too does the risk of getting cancer, due to the normal process of the body’s genetic integrity failing. But there’s more behind the higher incidence: women from low-risk countries emigrating to high-risk countries develop similar cancer rates.
Those first standard questions Dr Wilkinson posed on meeting me – Do you smoke? How much do you drink? What’s your diet like? et cetera – always gave me pause.
I clearly wasn’t obese, but it would have been a red flag if I’d walked into his room fat. I did play with my reproductive life, though, by tak
ing those white pills to keep my breast milk in, and taking the contraceptive pill for years before going off it. The answer to whether the enormous oestrogen and progesterone surges during pregnancy had combined to wake up my dormant biology and genetic predisposition to develop breast cancer remained unknowable.
For women, breast cancer is the most commonly diagnosed cancer worldwide – 25 per cent. Close to two million new cases are diagnosed per year and this appears to be rising. So too are survival rates. When I hear of this I remember that survival is often judged in terms of five years and sometimes ten. Most women diagnosed in Western countries, like Australia, have over an 80 per cent chance of surviving it – for five years. In Australia, it’s the fourth-most common cause of death for women.
Breast cancer is also the most common cancer affecting Aboriginal and Torres Strait Islander women. Even though their incidence of it is lower than that of non-Indigenous women, so too are their rates of survival. This could be due to later detection and poorer outcomes in rural settings – alongside poorer advocacy for Indigenous health in general.
I was told I had an unknown genetic link with my mother due to our young age at diagnosis. Breast cancer campaigns from government supported free breast screening for 50-to-74-year-olds, and non-government fundraisers have successfully brought the high incidence of breast cancer to the public’s attention – the pink ribbon is a successful marketing image, and has come to stand for breast cancer.
So too have famous actors or comedians receiving the diagnosis. After Angelina Jolie’s piece appeared in The New York Times about her decision to remove her breasts, there was an increase among women with BRCA genes doing the same. My antennae tuned in to the debate about women having prophylactic mastectomies, but what interested me more were those who had cancer, not those who feared its likely occurrence. However, I applauded Angelina Jolie bringing the BRCA genes’ existence to the public’s attention.
Jennifer Saunders had triple-positive breast cancer, like me. However, she chose to keep her breast after a lumpectomy. She too sank into a depression caused by her sudden loss of a sense of youth, and taking the (anti) hormonal pill Tamoxifen. She combated her slide into the underworld with ‘a little pill’ that ‘opened the curtains again’. When the chemo and radiotherapy finished, her hair returned, all over. She took a magnifying glass and pair of tweezers to herself.
Olivia Newton-John went a step further than writing about her experience. She lent her fame as a singer and actor and her cancer story to a flagship public hospital in Melbourne. The Olivia Newton-John Cancer Wellness and Research Centre focusses on the integration of first-rate medical science with the design of person-centred care – for example, having medical labs metres away from wards so that there is a true bench-to-bedside focus in delivering medical care. Alternative treatments such as herbal remedies and meditation are part of the program also.
Twenty-five years after Newton-John’s first cancer diagnosis, it metastasised to her sacrum. You are never cured in cancer, or safe from recurrence. The sword of Damocles is with every cancer patient: every survivor.
What’s not often discussed in the media is that breast cancer is not one-size-fits-many. There are different kinds. It can stay dormant in the duct and lobule without breaking out into surrounding tissue, meaning you’re fairly safe to leave it there. This is termed DCIS and LCIS: ductal carcinoma in situ and lobular carcinoma in situ. Or it punches through the walls of the ducts and lobules to invade surrounding tissue, like what happened to my mother and me.
Paget’s disease of the nipple is a rare breast cancer that forms in the nipple and areola. It’s associated with invasive cancer somewhere else in the breast, and often confused with eczema due to its scaly brick-red appearance. Another invasive kind of breast cancer affects the lymphatic vessels, leaving the breast red and inflamed.
These are types of breast cancer, but that doesn’t speak to their genetic make-up. In this arena there are multiple combinations. For those with a BRCA gene mutation their hormones may not play the major role in developing the disease. For my mother and me our cancers fed on oestrogen (ER+) and progesterone (PR+) to grow, with mine having the extra HER2 protein. One in five cases of breast cancer is HER2 positive. It’s considered more aggressive. But you can have different levels of cancer sensitivity to your hormones. Some cancers, like mine, are highly positive to oestrogen and progesterone. Others are not. You can also develop triple-negative breast cancer (negative to hormones and the HER2 protein).
If you have a BRCA1 or 2 mutation, you have a higher chance of developing breast and ovarian cancer than the normal population. Around five to ten per cent of breast cancers have a BRCA mutation. We all have BRCA genes, but those (mainly) women who develop breast cancer from their BRCA1 mutation are more likely to test as triple negative. Those with BRCA2 mutations are more likely to have ER+ breast cancer.
But when did breast cancer first develop in the world?
From ancient times our breasts have had the ability to develop the disease. Egyptians wrote on their papyri of bulging tumours with no cure. The father of Western medicine, Hippocrates, in 460 BC described cancer as black bile, one of the body’s four humours: blood, phlegm, yellow and black bile. Dutch physician Franciscus Sylvius challenged that theory in the 17th century. He said the problem was a chemical process that transformed lymphatic fluids to acidic base. Bernardino Ramazzini, the father of occupational medicine, hypothesised that a high frequency of the disease among nuns was due to a lack of sex. No sexual activity for reproductive organs meant they could decay and develop cancers. On the contrary, researcher Friedrich Hoffmann of Prussia believed sexually active women who developed the disease were having sex too vigorously, leading to lymphatic blockage. Many theories abounded from here on in about the source of women’s breast disease: mental disorders, curdled milk, childlessness and a sedentary lifestyle.
The famous 17th-century painting by Rembrandt of his long-time love Hendrickje Stoffels enacting Bathsheba, King David’s wife, naked at her bath, was an icon of breast cancer publicity in the 1980s. The blue-tinged dimpling on her left breast was regarded as an early visual record of the disease. Dutch scientists from the University of Twente, working on the properties of human tissue, simulated the firing of millions of photons at a tumour. They concluded it was highly unlikely the painting was a depiction of breast cancer based on discolouration, and that the eye would only pick up a blue tinge caused by breast tumours if they were located one to three millimetres under the skin. As most tumours are much deeper than this, it diminished Bathsheba’s usefulness as an iconic image. Though dimpling in a breast can mean cancer’s present.
The 18th-century French physician Henri Le Dran said that removal of the tumour and infected lymph nodes in the armpit helped treat breast cancer. A pioneer in cataract surgery and the removal of bladder stones, Claude-Nicolas Le Cat argued surgical removal was the only treatment. These beliefs led to the creation of the radical mastectomy as the best medical response to breast cancer.
By the 19th and 20th centuries, with the development of better medical care, like antiseptics, anaesthesia and blood transfusions, people survived surgery in far greater numbers. William Halsted introduced the en bloc radical mastectomy into surgical practice. His method was to remove the breast, axillary nodes in the armpit, and the chest muscle. This became the go-to response to breast cancer for 100 years. The radical mastectomy remained common practice four decades into the 20th century.
The development of a systemic theory took over when ovaries and then adrenal glands were removed by surgeons once the discovery that reducing oestrogen in the bloodstream reduced tumour size.
In 1976 Bernard Fisher began a study that would show that breast cancer patients had the same survival rate whether they underwent a radical mastectomy or less invasive surgery followed by radiation and chemotherapy. Dr Fisher, a former specialist in liver regeneration and transplantation,
joined I.S. Ravdin’s National Surgical Adjuvant Breast and Bowel Project. Dr Fisher’s decades of clinical trials and laboratory research into tumour metastasis led to a surgical shift away from Halsted’s radical mastectomy.
Modern medicine has seen huge leaps in novel therapies for breast cancer, like hormone treatments, and better surgical and biological therapies. Mammograms and ultrasounds have been developed for early detection. Genes have been isolated that cause breast cancer: BRCA1, BRCA2 and ATM. The ATM (ataxia-telangiectasia mutated) gene helps control the rate at which cells divide and grow. Scientists are finding or have found many other gene mutations, as in the HER2-amplified breast cancer I had, that play a role in causing tumours to grow.
The new way in breast cancer and its treatment is in the arena of personalised medicine and gene therapy. I can imagine a day when ‘good cells’ are used, by extracting, medically tweaking and then returning them to the body, to attack and kill cancer cells instead of chemotherapy. When this happens cancer patients can live a life while going through treatment without extreme ill health and hair loss. My fingers are crossed, big time, for this to become standard treatment in my lifetime.
I live with cancer every day. I choose to do this, as a reminder that my future death wants me to live well now. The bodily truth of its one-time existence is writ large: I see it in the shower and in the mirror – my portacath peekaboo scar atop my left breast. When the breast surgeon removed nine lymph nodes from my armpit, one of them a nugget of cancer, I developed cording. It’s like a thin rope pulled taut under my flesh, my skin forming a tent along its raised seam, from the breast, to the armpit and down the arm. I have this tugging at my flesh every day.
Seven years of taking Arimidex atrophied my vagina. With such low levels of oestrogen floating around I shot into my 60s, it seemed. Now I looked at women over 60, in their 70s, and officially old in their 80s, and saw the unspoken. The first national study, Sex, Age & Me: A National Study of Sex and Relationships Among Australians Aged 60+, showed a mild movement in the media about acknowledging ageism around ‘old age’ people having a sexual life. I was 42, but felt a projected kinship. I never heard mention of penetrative intercourse being a part of that life. Did most women, years into menopause, have vaginal walls so thin that penetration could hurt like a razor blade?
In Danger Page 16
