In 2017, my life was already full to the brim.
As a 52-year-old single mother and full-time carer for my son, who has a complex mental illness, there wasn’t much space left for myself.
Like most carers, I was used to pushing through discomfort and ill health. The indigestion, the nausea – I convinced myself it was stress, exhaustion or just life.
But eventually, my doctor insisted I see a gastroenterologist. During a routine gastroscopy, they found some unusual little dots inside my stomach.
‘Nothing to worry about, probably,’ I thought. But those dots were sent off to the Peter MacCallum Cancer Centre. Days later, the results came back: well-differentiated papillary mesothelioma, non-asbestos related (WDPM).
It’s a cancer so rare that fewer than 50 cases have ever been documented – and most of those were only discovered after people had died.
I remember staring at the words on the paper, trying to make sense of them. ‘One in 250 million,’ my doctor said, shaking his head.
‘I’ve never seen it before, and I probably never will again.’
I remember staring at the words on the paper, trying to make sense of them. ‘One in 250 million,’ my doctor said. ‘I’ve never seen it before, and I probably never will again’
It was like I had won the worst lottery in the world.
The first wave of emotion that hit me wasn’t fear. It was disbelief, soon followed by a cold, practical dread. Who is going to care for my son if I don’t survive this?
There’s no manual for this type of diagnosis. No neat pamphlet titled, ‘So, you’ve been diagnosed with a cancer that shouldn’t exist.’ I am stubborn and determined, so I turned to research, desperate for answers.
I reached out to people overseas, joined support groups, but even the international forums called me a ‘rare duck’. There just weren’t many people like me.
Through my digging I learned all about stomas and a radical treatment called HIPEC – heated chemotherapy pumped directly into your abdomen during surgery, washing your organs for hours in an attempt to remove every last trace of the disease.
Unlike other cancers that grow as tumours, this one spreads like moss, clinging to the surfaces of your internal organs, invisible on scans. It was decided that HIPEC would be the treatment for me.
I had to be cut open from my breastbone to pelvis. The surgeons would scrape away what they could see, and then flood my abdominal cavity with heated chemo for two hours. Only two hospitals in Australia offered the procedure.
I kept thinking: How did I end up here? But I knew I didn’t have time for shock. I had to act.
Nothing about my treatment went to plan – and no one apart from my son came to visit me
On the day I was diagnosed, I stopped by my parents’ house. I told them, hoping they’d sense the gravity of the situation. My dad got emotional. My mother stayed cool, detached. I could tell they didn’t really understand how serious this was.
Later, I brought my entire family – my parents, brother and sister – into an appointment with my surgeon. I thought hearing it from a medical professional will make them take it seriously.
But while my surgeon was brilliant, he was also reassuring by nature; he focused on the positives. My family latched onto that and dismissed everything else.
The situation quickly spiralled.
They thought I was being dramatic. They didn’t hear the gravity, the risk, the sheer scale of what I was about to face. Instead, they decided I was exaggerating. Overreacting. The cancer wasn’t that bad, after all. Did I really need the surgery?
The insinuation stung. Did they think I’d dreamt up a vanishingly rare, life-threatening condition for attention?
Meanwhile, my son was unravelling.
The stress sent him deeper into his addictions, already fuelled by his mental health issues. I watched him teeter on the edge while I was barely hanging on myself.
I called a family meeting, desperate to create some boundaries. I asked everyone to stop burdening my son with questions. ‘Come to me,’ I said. ‘He’s unwell and can’t handle this.’
I also announced that I’d given medical power of attorney to a trusted friend – someone I knew would make decisions in my best interest if I couldn’t.
Some family members took that news as a betrayal. The meeting blew up and arguments escalated until, in exhaustion, I said to my mother, ‘I relieve you of your parental duties. You don’t have to do anything if that’s what you want.’
She took me at my word.
The day of the operation, I reassured my son as he dropped me off at the hospital. I forced myself to be cheerful; if this was the last memory he’d have of me, I wanted it to be a good one.
The plan was straightforward: in and out in seven to ten days. That’s what everyone expected. That’s what I expected, too.
But nothing about this went to plan.
Even though I had been diagnosed with one of the rarest forms of cancer in the world, my family told me I was ‘being dramatic’. I knew I would have to go through treatment alone
The initial surgery itself went well. But seven days later, a wound complication – my abdomen bursting open internally – meant I was rushed into emergency surgery. After that, my body began to fail me. I couldn’t eat. I was fed intravenously through a PICC line.
I contracted infections, developed a collapsed lung, endured a stomach bubble, and battled through each day with barely enough strength to sit up.
I wasn’t in hospital for seven days.
I was there for three months.
And no one came.
Not one member of my family visited – not during the first week, not when things became critical, not when doctors thought I wouldn’t make it. Not even as the days dragged into weeks and then into months.
My son visited as often as he could manage, given the turmoil he was facing on his own. Some friends came too – most of them carers themselves who carved out precious time between their responsibilities to make the long trek into the city to be with me. But family? Nothing.
They later told me, ‘But you said not to come.’
No. I had said, ‘You don’t have to if it’s too much.’ I had simply tried to ease the burden. But they took that as permission to disappear entirely.
There were moments in that hospital room – alone, frail, staring out the window – that I thought maybe this was it. Maybe the invitation to let go was right there. But stubbornness is a powerful thing.
Every day, the nurses would pull me out of bed and sit me by the window overlooking the city. I’d watch the people walking along the streets below and whisper to myself, ‘You will walk down there again one day.’
And eventually I did.
Maybe, deep down, I knew I still had work to do. I had already lived as a carer, supporting my son through the challenges of mental illness long before cancer knocked on my door.
And after surviving what felt like the impossible, I wrote Called to Care: Everything You Never Wanted to Know About Mental Illness and Caring for Someone Who Suffers. It’s the book I wish I’d had when I first stepped into the world of caregiving – raw, honest and filled with the kind of truths most people don’t talk about.
I know now that my story, as painful as it has been, is meant to help others find their own strength in the darkest of times. Maybe that was the reason I was still here: to make sure no one else feels as alone as I did.
But despite what I have achieved since, I didn’t come out of those three months in hospital the same woman.
I had faced one of the rarest cancers on earth, endured unimaginable complications, and survived. Alone. That kind of survival changes you. It makes you see who you really are when everything else falls away.
It would be easy to sit here and tell you that I don’t still grieve the absence of family during the hardest time of my life – but I do. Somewhere deep inside, I wish someone had been there to hold me, even just once.
But what I found instead was something far more powerful: the belief that I could hold myself.
I survived for my son. For the story that still needed telling. For the women I knew I could help if I made it through.
Even now, life isn’t easy. The HIPEC procedure has left my organs fused together. I can feel food moving through me, painfully. Sometimes I stop mid-sentence, breathing through waves of nausea. The medications are expensive. The pension barely covers it.
But I keep going.
What surprises me most about all of this is the resilience I didn’t know I had. If I can survive this, why can’t I have the life I want? Why can’t I help change the world?
I’m working on a new book now. It’s a book for unpaid carers, and women in the middle of their lives; it is for those women who give up so much their time to care for others, and those who feel invisible, unseen and unfulfilled. The Art of Ageing Backwards will be the encouragement they need to reclaim those lost years and live a life they always wished they had.
I’m also intent of building a community of women I call ‘Brave and Unstoppable’. Because that’s what I’ve become. And if I can, so can they.
No one should have to endure something like this without support. But if you’re reading this and you feel alone, please know you’re stronger than you think. And when family fails you, there’s always a chosen family waiting somewhere out there.
You can survive. You can heal. And you can still create a life worth living. The strength is always within you.
