In Danger

by Josepha Dietrich

  The Women’s Wellness Research Program, run out of Griffith University and affiliated with the Queensland University of Technology, has developed a 12-step intervention called the Women’s Wellness After Cancer Program, which addresses some of these issues. The program has shown significant results for women’s sense of happiness, measured in terms of reducing weight and improved sexual self-efficacy. I did casual work for this program as a research assistant on the dataset results.

  In moments of contentment I’m the original Amazonian who cut off her right breast to shoot straighter. I did everything to live for myself and for my son. Bereaved spouses find other partners after the death of their significant others. B would find another mate – my son would no longer have his mother if I died early.

  With the return of a new normal, some of the rapidly made decisions leading into my first lot of surgeries came back to haunt me a little. I attended the 43rd Clinical Oncology Society of Australia’s joint conference with the Breast Cancer Trials group to take part in advocacy training around improving clinical-trial participation in Australia. The current knowledge and work in the breast cancer space is on neoadjuvant therapy, meaning if you get a breast cancer diagnosis now you can go straight into more refined chemotherapy regimens and, depending on your tumour type, you may not require such invasive surgery. You might preserve your breasts with the same survival rates as mastectomy. Of course this depends on your particular brand of cancer.

  My double mastectomy I have no qualms about, nor my chemotherapy regimen, administered under a clinical trial where I took a particularly toxic form of drug, one of the taxanes, which can leave you permanently bald and with reduced heart function. One choice stirred regrets when I reached 42. I had been asked if I wanted to preserve my eggs before undergoing chemotherapy. I refused. When my period returned soon after finishing chemotherapy I was told I needed to shut my ovaries down due to them pumping out the very hormone that triggered my cancer. I chose to remove my womb, ovaries, fallopian tubes and cervix. Would it have been possible to have another child post–cancer treatment if I’d left myself intact?

  I’ll never know.

  I’d wanted more children. The grief around this came back – not in full blaring horns of Shit, what did I do?, but in a slow, dripping way – in That wasn’t what I’d wanted pangs. The kind of sadness like a shadow that sometimes you notice and are at other times entirely unaware of. I’m sorry, future second child, we’ll never meet.

  The truth of my birthing Celso – my first near-death experience – and my developing an aggressive form of breast cancer within my son’s first year of life is that my body was not well suited to making babies. I wish it were different, but it’s not. The combination of a likely genetic tweak behind my son’s ‘abilities’ and my kind of cancer meant bearing children was dangerous for me.

  In Australia, I cannot adopt a child because I’ve had breast cancer and now likely because of my age – 42. Of course, birth mothers get cancer but government human services have decreed that placing a child with an adoptive mother who might die prematurely is too great a risk of another grief. Clearly, the wisdom of this doesn’t follow national statistics on survival rates or look to the father’s ability to be an excellent parent – solo or not. All that aside, my mother’s experience of adoption made me pause. Would I be doing the child a favour? Is it really about them or about me wanting a ‘normal’ child? Is it because I want a playmate for Celso to develop his social skills, and not about openheartedly loving another child? Truthfully, I’d hope for all of these: the joy of witnessing a daughter or son develop normally, and the benefits this could reap for Celso.

  This year, ten years after my mother’s death, I received a strange phone call.

  Is this Josepha Ruth Dietrich?

  Yes, I said, getting ready to end the sales conversation.

  This may seem strange, but we’ve done an audit on all our superannuation accounts and we didn’t pay all of your late mother’s estate.

  I looked up at the ceiling with its bare light-bulb and thanked my mother – again. I was two weeks out from finishing a contract as a research assistant with the psychiatry department of the University of Queensland’s Faculty of Medicine. The quality improvement project I was working on trained psychiatric nurses in motivational interviewing to improve the discharge planning process for people coming out of inpatient psychiatric units. I’d first returned as a casual then taken this part-time position when Celso was five years old. Now, just as it wrapped up, came a much-needed windfall from my mum.

  In 2017, at nine years old, all of Celso’s front teeth are loose. He has one cartoon gap – an empty square against his other teeth – when he smiles. The tooth fairy hasn’t visited his pillow with money as yet. This is so Celso:

  Stalled

  stalled

  then …

  change.

  He’s taught me so much about not hanging onto expectations.

  He attends a mainstream school with an integration aide in the classroom with him, helping to interpret class work and engage with his peers and wonderful teachers. Our local school community opened their arms to Celso. Certain children gravitate towards him in the playground, making him their special friend; these are usually those with some emotional experience too hard for their young selves to understand yet, like arriving in Australia without English and having to acquire the language quickly, or those classed as different in some way, who find Celso’s non-judgemental acceptance of them a relief.

  I’ve organised outside professionals – an occupational therapist with years of experience with atypical children, and a music therapist who’s focussing on his speech – to attend the school for therapy sessions each week. The primary school’s enrichment education co-ordinator has put together a team of the best aides, young and vibrant, the school speech therapist and the pick of the teachers who get my son. Until year three he only attended four days a week. In agreement with the school, Celso required time away and Fridays were Son-Rise Program days, where play therapists worked on social engagement, eye contact and vocalising. Even now Celso finishes school at 2 p.m., finding his energy permits this and not more.

  Post–cancer treatments, I signed up to ride more than 200 kilometres over two days to raise money for breast cancer research by the QIMR Berghofer Medical Research Institute. Over five years my Breast Friends for a Cure team raised just over $120,000 and cycled hundreds of kilometres in training and during event weekends. This led to my meeting the CEO of QIMR and some of their fabulous scientists. Through these connections I got a position going out into the community and into businesses to speak about the Ride events. The job was part sales, part inspirational talker, part fundraiser. CauseForce, who ran the events, raised millions for cancer research.

  The sales component of the job fitted like a man’s suit and, after my second trip to the Autism Treatment Center of America to train in the Son-Rise process that helped my son, I walked into the office, and sat down. By day’s end I’d resigned. For a year I’d put my hat in the ring of doing something to raise large sums of money for cancer research. Stepping out under the ropes, I found a position that so much better reflected my psychology background and more of my values in the research assistant position that was just coming to an end when Mum’s extra super turned up.

  Another surprise outcome of my participating in the Ride events was getting selected, alongside another of my Breast Friends for a Cure teammates, to be featured in a coffee table book: Under the Red Dress. Beth Whaanga and her friend, photographer Nadia Masot, created this project after Beth posted photographs of herself on Facebook after mastectomy and reconstruction. A hundred ‘friends’ de-friended her and this led to a campaign, in photographer Nadia’s words: to build awareness around cancer and cancer-related stigma, particularly regarding the grievous bodily scarring that results from surgery and treatment. To destigmatise issues around disease
taboos in society … to play a part in redefining the world’s idea of ‘beauty’ and unattainable perfection.

  I also became an active cancer patient advocate with CanSpeak Queensland, the voice of the cancer community, which led to a position on the Community Board Advisory Group (CBAG) for the Metro North Hospital and Health Service – the largest one in Australia. CBAG provides advice to the Metro North Hospital Board on consumer and community engagement to improve health outcomes for communities in Metro North Brisbane.

  My mother’s campaigns for equal rights for women and an adoptee’s legal right to know their mother’s information stood behind me as a reminder that ‘turning up’ to contribute in public life makes a difference. My survival was one legacy of my mother’s premature death; another was my own mission to try and reduce the chances of other mothers dying young.

  Celso’s diagnosis and hope

  But if I’m not the same, the next question is, ‘Who in the world am I?’ Ah, that’s the great puzzle!

  Alice talking to The Rabbit

  Lewis Carroll, Alice’s Adventures in Wonderland

  I have no qualms diagnosing your son as having autistic behaviours, so now you can apply for government funding, said the developmental paediatrician. He was South African, wore a pink-striped shirt and aligned his desk’s writing pad so it sat square to the tabletop.

  Great! I said and meant it. Celso’s exclusive activities, like reading book after book about birds while avoiding all eye contact, were clues that he tended towards an Autism Spectrum Disorder.

  A label was helpful to tell others, but mostly useful for B and me. When strangers asked with raised eyebrows and upwards inflections, And how old is your son?

  He’s three, I’d say, then feel a need to explain him.

  When we first started Celso on the Son-Rise Program around his fourth birthday, it felt like convincing a child from Atlantis to break the watery surface between us and enter my world. We set his bedroom up with high shelves, mirrors and padded floor, so I could run the play-based therapy in his bedroom. The high shelves were for getting distractions, like toys, off the floor and up high, and if he wanted something he needed to communicate with someone to get it (this sounds punitive, but it wasn’t). This basic-sounding idea for communication was very effective. Celso’s eye contact improved remarkably as he was so keen to get his Schleich toys or his books.

  The mirrors were for communication too. It was less demanding on Celso to look at you via the mirror – like being at one remove from direct eye contact, something most people with autism feel acutely. The padded floor was for comfort in play.

  Celso was squirming his way to the middle of a springy child’s tunnel. I grabbed the reinforced circles and picked up the tunnel and him, held him up in the air, then lowered him gently down. His end-of-the-broomstick sharp little feet punched out through the fabric.

  I’m hungry! Yum, yum, yum. I pretended to bite his feet.

  He was squealing, excited, a bit frightened – happy.

  I pulled down the lip of one end of the tunnel and Celso stared with his pearl teeth exposed with bright-eyed laughter into my face.

  I love it when you look at me! I pointed to my eyes.

  He was maintaining eye contact. Should I milk the moment with positive reinforcement? Instead, I smiled back at him and continued bite-play.

  Since we’d started therapy he had gone off all medication and started eating, drinking water, spelling up to 50 words like echidna with his wooden blocks, or typing them out on our computer. His eye contact had improved considerably, he sought us out for cuddles and kisses, he gestured and expressed wants and needs. And most noticeably his receptive language had turned on. He understood and responded to everything we said. We were on our way. I didn’t know how far Celso would swim up to the surface of our world from his Atlantis, but he was swimming – I could make out the clear lines of his face now.

  As the year drew to a close I received my Master of Arts (Research). I had written that novel in the end, a young adult fantasy. It wasn’t published, but it existed out of my mind and on the page.

  I’d spent my 30s wrestling myself back from the jump into the unrecoverable: grief, madness, death. I held the image of myself like a hand mirror. Up until my mother’s death I’d have said, You’re the stable one. I didn’t know if that was so true anymore. Mainly I glimpsed the bright, real rays of hope in a life – the life I was given. The exquisite working mind and working heart of a healthy body. Every day I had a daily Oh gods thank you when I caught myself throwing Celso into the air with the strength of my non-cancerous body. Fingers crossed, may it last as long as humanly possible.

  The word heaven kept popping into my mind. I said this often. I had no desire to reach the Christian version, but rather the children’s author Philip Pullman’s idea of a republic of heaven on earth. It wasn’t always pretty and kind but four years on from breast cancer I’d reached my own republic.

  My life had been saved three times. The first by a surgeon’s hands after the birth of my son. The second was by my mother’s death and its education of the better medical choices to make on my diagnosis. The third: by writing. I needed it to access a language of grief, buried ambition and hopes for a future I wanted, but didn’t know how to reach. Writing my life was the second helix coil twisting and turning inside me rebuilding my body.

  My mother and I in November 2005, one month before her death

  Acknowledgements

  To my partner, B, and our son, Celso, thank you. To the family and friends that flocked around us during the time when arrows and javelins rained down – thank you.

  For my mentor on the final run-through of the manuscript – the real work – Kristina Olsson, you are a wise writer and a joy to be around, thank you. To my publisher, Alexandra Payne, and editor, Ian See, from UQP – thank you for taking a punt on me, an unknown voice among many writers trying to get their work published. To Kate O’Donnell, who delicately took my manuscript into her editor’s hands and made insightful, spot-on comments on what worked and what didn’t as a ‘first reader’ – thank you.

  It took knocking on the door, over many years, to finally have one night where the stars aligned – a salon reading where the right people were in the room listening: Krissy Kneen (who introduced me to my agent, Jane Novak) and Jill Eddington (newly minted CEO of UQP) – thank you.

  Resources

  These resources helped me during my cancer regimen, pre- and post-treatment:

  • The Wesley Hospital Choices Cancer Support Centre matched me with a woman a bit further along the treatment regimen than I was, so I could discuss what was happening to me with someone who knew. Choices has a network of professionals that can offer expert clinical advice, specialist peer support, yoga and art classes, bra fittings (on-site) for women after mastectomy, and many other important services. All free!

  • Mater Chicks in Pink provided funds for a nanny to care for my son when he was in hospital and I couldn’t attend to him. They ran a Mindful Parenting program for women who had children and were going through breast cancer treatment. I met my Right Wingers (support group) there – three other women with right breast cancers: Briony, Katie and Linda. These women have become a lifeline for me. We share a unique bond forged through very difficult times and remain a constant support to one another, catching up regularly to check in on how we’re faring.

  • Ten sessions provided (FYI: this is per calendar year, folks) by Medicare to see a psychologist.

  • A hospital psychiatrist, free of charge, accessed through the Royal Brisbane and Women’s Hospital for the length of my chemotherapy – she saw me on ward during treatments.

  • Mummy’s Wish provided funding for a house cleaner during part of my chemotherapy, so I didn’t have to clean the house while trying to care for my son.

  • A family GP: get one who is the right fit for you, an
d who also knows lots of stuff and advocates for you to receive the services available in Australia.

  • A road bike helped me to get fit again and feel my body come back to life.

  • Cancer Council Queensland provided funding for my synthetic wig ‘Tiana’ (purchased through Starkles).

  • Look Good Feel Better offers a free one-off workshop for women on dealing with the appearance-related side effects of cancer treatment (the workshop includes free make-up).

  • The Ride to Conquer Cancer, benefitting the QIMR Berghofer Medical Research Institute: my team, Breast Friends for a Cure, focussed on raising money for breast and gynaecological cancer research as a way to give back to the science community that kept us alive. The ride also created a focus for exercising regularly. I ended up working for CauseForce, who run the Ride and Walk events, as my first job after my treatments finished and my son was in school.

  • The Weekend to End Women’s Cancers: I was volunteer captain of the caboose team of cyclists on the walk route, providing support and encouragement to the walkers who were raising money by taking part in the event. Connecting with a cancer community helped a great deal during this period of time. It gave a sense of meaning to what had just happened to me and others.

  • Denise Stewart, whom I call a magical witch for her capacity to show me how to stretch my scars to fix cording and stiffening after my numerous surgeries, is a well-informed and proactive professional in her field of occupational therapy. I accessed her services through the Mater Private Breast Cancer Centre.