Two women speak to Amal Awad about a cancer diagnosis in their 30s.
Artwork by Caitlin Shearer.
Louise* is not a ‘religious’ person, but before her major surgery to treat stage four endometrial cancer, she prayed. It wasn’t God she turned to in those dim moments, instead Louise directed her invocations to Roman divinity Bona Dea, the ‘Good Goddess’.
The process of preparing for surgery is a complex one. As Louise recalls: “I had to do the bowel cleanse because they were working on my abdomen, so that involves two days of drinking nothing but liquid and just pooping like a waterfall – it’s so undignified.”
A friend likened it to the travails of a spiritual warrior. The great cleansing before communing with the gods. He suggested Louise find a patron within the pantheon of deity mythologies. Louise found Bona Dea.
An ancient Roman deity of health and womanhood, only women could worship Bona Dea and maintain a temple in her honour. In the eyes of Bona Dea, all women, slave or mistress, were equal. All were permitted to indulge in secret rituals, to drink wine and make offerings, led by the Vestal Virgins.
“If you’re going to pray to a spirit or a God about your looming hystorectomy and everything-ectomy, I think she’s not a bad one, right?” Louise muses.
Louise found comfort in the invocations she performed. “I felt like she spoke to me… I felt like she was with me. But I think in situations like that where you’re so afraid and… death is an actual possibility, I feel like your mind opens a little bit more, your spirit opens a little more, the barriers between you and everything else… they’re a bit thinner…” The veils between worlds are thin.
Yes, Louise says. And it’s about vulnerability, too. In a world that demands a constant, thick guard of resilience, the possibility of death rips you open.
We’re in a bustling inner west Sydney café, an area of the city that, like a once-ailing body revived, has been struck with new life due to gentrification. Worn-out milk bar signs sit unobtrusively between hipster cafes where everything is organic, or made with local produce and garnished with pretty, vibrant flowers. Everywhere you look there are signs of progress and fading nods to the past.
Louise fits in despite looking anything but hipster. Her social media persona is an amplified, artfully goth character who is witty, sharp and attuned to the struggles of life. In person, she seems a little quieter, her soft voice lifting itself above the din of the café as she recounts the most challenging time of her life.
We’re here because my explorations for a book on ageing and illness in Australia have led me down a fresh path. As I document stories on how people deal with the gradual decline of their bodies due to ageing, I find myself querying how the experience of illness differs when it afflicts the young.
In a world that demands a constant, thick guard of resilience, the possibility of death rips you open.
Louise is no stranger to me, but today we are connecting in a heightened way. Illness can grind you down, but also reignite you. Today, she emotes on her connection to a Roman goddess of health and womanhood, explaining how deeply her cancer affected her relationship with her body and femininity.
Louise was diagnosed at 37 with a very advanced cancer not usually seen in women below the age of 60. It took a circuitous route: starting in her uterus, then onto her reproductive system, through several lymph nodes in her groin and para-aortic area, into her adrenal gland.
“I had all of that removed via surgery, so basically they split me open and scooped me out. It was a big surgery,” Louise says. “Took me a while to recover, and then I had quite aggressive chemotherapy, which also took me a while to recover from.”
For years, Louise sensed that something wasn’t “right” in her body. Visits to medical professionals procured no diagnosis, apart from hypochondria. She suffered depression and developed an anxiety disorder.
The uterine cancer was unusual, and as she would discover, due to genetics. Louise’s family has Lynch Syndrome, a genetic mutation that predisposes you to certain types of cancers: uterine, bowel, prostate.
Louise speaks of tests as frightening and invasive. “It’s like this secret, painful, dark part of yourself that’s just ripped open and everybody’s staring at it, talking about it.”
As Louise was plunged into the experience of cancer, it wasn’t a sense of unfairness that plagued her; it was sadness, grief and mourning at her “lost future”. She was ageing young and grappling with the effects of cancer on her body, not just as a human, but as a woman. While she had been undecided about having children, her illness stripped her of the possibility altogether.
Louise’s sadness led her to tap into a darker thought: the idea of your femininity dissolving with the loss of hormones. “Like a possibility of life when you’re a woman, you hold that, even if you don’t want to have kids. Having that taken away from you feels like a bit of your identity has been taken away.”
Louise’s thoughts on her compromised body, a shadow over her femininity, led her down an interesting pathway. She began to dissect the portrayal of fictional female monsters.
“It’s more about a male gaze and the way that men saw women who couldn’t reproduce. The idea of a barren woman being a jealous, hollow woman who wanted to extract life from other people.”
The result was an intensely fascinating and creative deep-dive into Louise’s lonely, exploratory state of mind. On social media, she posted imagery of grotesque female monsters, funny images to reflect what she was feeling. She was humorous and mocking of her condition. She nicknamed the large tumour in her uterus ‘Frankenbaby’. She wanted interaction and to find healing through words and expression. Simply, it helped to write it down. It wasn’t self-pity or stoicism, it was her truth, her desire to unpack events, to make sense of them.
“It’s like this secret, painful, dark part of yourself that’s just ripped open and everybody’s staring at it, talking about it.”
She was also grappling with self-worth and how the inability to have children would now form part of her identity. “As though your feminine attributes come from the potential to bear children. And once you can no longer do that … you’re not human anymore,” she observes.
“There’s no value in your mind that you’ve worked so hard to build. The personality that you’ve worked so hard to create. The love that you give is somehow not relevant because you can’t have kids.”
I spoke to several women about various health conditions. When health and vitality are compromised, there is no shortage of pain, anguish and loss. Traumatic childbirths, conflicted, compromised bodies, chronic illness and disability – all of them affect people differently, but there are similar threads in all of them. All of the women expressed vulnerability.
When we meet on a sunny afternoon in Canberra, Ginger retells her journey in a matter-of-fact manner, but there is an emotional edge. There is still some turbulence to negotiate. You don’t speak about dealing with cancer and nearly dying in hospital without feeling it again, somehow, in some way.
Ginger, who was diagnosed with thyroid cancer at 30 when she was “literally the fittest and healthiest” she had been all her life, was confronted with a dilemma. She asked not what miracle cures and natural wellness could do for her. Rather, she worried: “Am I ‘biologically unfit’ now? In fact, am I meant to die?”
Ginger is in her 40s now, but she was single and child-free at the time of her illness. (She has since married and had kids.) Still, she worries about what sort of unfit genes she may pass on to future offspring. “My husband is a population geneticist and microbiologist by training, and he just won’t discuss it with me, he gets really upset.” He tells her that we have evolved; that science has evolved, and medical science is the reason she’s alive. Ginger is meant to be here.
Nevertheless, for Ginger, a social justice journalist with a fascination for Darwinism, her introspection into her own mortality and fitness was traumatic. She’s a left-winger and hates the idea that she could survive only with the help of big pharma. That made her angry. The idea of ‘survival of the fittest’ taunted her.
Ginger is used to interrogating things, to probing into the complexities of human experience, of what happens to us and why, and importantly, how we deal. She is reflective on how we tell stories, including those around illness. We have accepted tropes and they are generally the ways people can understand or talk about illness. She invokes The Wounded Storyteller, by Arthur W Frank.
“One of [these tropes], for example, is that you’re vulnerable and you’re weak. The other one is that you’re a hero and you’re fighting this brave battle,” says Ginger. “None of these stories fitted me. Obviously, at times I felt very weak and vulnerable, but mostly I just felt quite tough, and I wasn’t a brave hero or heroine fighting cancer, nor was I weak and vulnerable, I was something else.”
“You were you,” I offer.
“That’s right and I think that this is why it’s so hard to be a person with an illness because who in this universe fits those ridiculous tropes?”
Ginger’s objection to this casting taps into a similar observation by Louise – that stories can determine how we perceive illness and in the case of females, the effects of it on their female bodies.
Speaking to women dealing with illness, I detected a common thread of resilience, a desire to rework the narrative others might wish to tell. Louise tackled female subjugation through imagery of monsters; Ginger queried her biological fitness, and the archetypes framing discussion about it.
Ginger wanted to weave her own narrative. Following her full thyroidectomy, she made the unusual request of seeing her cancer cells. She thought it would be useful, helping her prepare to be “cut open” and, she admits, she wanted to see what cancer looks like, to look her bad cells “in the eye”.
Her pathologist obliged, showing her the cut-up cancerous thyroid on slides and placing them under a powerful microscope.
“It was amazing to see because normal, healthy animal cells are beautifully shaped and they have a very strong nucleus, and these were just nasty. They were long fingers that were all melded together and their nuclei were disgusting shapes, and I could see that they were sick.”
Ginger says it might sound strange, but it helped her. “I thought, ‘Good, OK, I can see what was wrong, and now I’m ready for the bit that fixes me’.”
Speaking to women dealing with illness, I detected a common thread of resilience, a desire to rework the narrative others might wish to tell.
Louise recognises the importance of narrative in her illness journey, too. She tells me that she not only prayed to Bona Dea, she also struck a deal. “I said, ‘Look, you get me through this, I’ll tell everybody about you. And I will get a tattoo of your symbol’.”
Bona Dea’s symbol is the snake, a frequent creature of global mythologies. It is a symbol that many find confronting, but its relevance lies in its ability to survive. To shed its skin and have new life.
Louise says she’s yet to get the tattoo, but I can picture how well it would suit her. A coiled creature with concealed power and the ability to prosper under the most difficult conditions.
And that promise to tell everyone about Bona Dea – that, at least, she has fulfilled.
Amal Awad’s book on ageing and illness, Fridays With My Folks, will be published in early 2019 by Penguin Random House.
Caitlin Shearer works from her studio in Melbourne as an illustrator, seamstress and clothing and textile designer. Fond of the exquisite forms found in nature – be it bodily or plant based – she looks to inspect the world with an intrinsically female eye at all times. Her multidisciplinary skills meet and then meld to create a visual world of their own.