The pain radiated from a spot just to the right of my belly button, so precisely I could have drawn an X on my skin.
It was a Monday evening in early July 2021, and I was lying on the couch next to my boyfriend, Mick, watching Four Corners. It had been a typical lockdown day – working from the kitchen table, a stroll with a mate past the shuttered bars we used to frequent. And then it wasn’t. The pain was soon joined by a swiftly rising tide of nausea.
By the time Media Watch had finished, I had my head in the toilet. I threw up, and then did it again and again, for hours until I felt dizzy and empty and certain something was very wrong.
By the early hours of the morning, Mick and I were rushing to the hospital.
But I would get no answers that night. Instead, I got a classic “women’s abdominal pain” response – questions about my period and what I’d eaten. After a few hours, some IV fluids and paracetamol in the emergency ward, I was discharged with presumed gastro and a dismissive look from a harried doctor.
It would be another three weeks – and multiple hospital admissions, misdiagnoses and discharges later – before I learned what was wrong. At the age of 36, I was finally told I had bowel cancer.
As the Guardian has written about this week, bowel cancer is one of several types becoming more, not less, common among younger adults. In the last two decades, its incidence in 20- to 39-year-olds more than doubled, from 4.4 to 10.3 cases per 100,000 people. Still rare, but rising. This is happening even as rates decrease among those aged over 50.
There are theories about what is causing this to happen – primarily, our changing lifestyles, and different exposures. But doctors, and patients like me who go through it, still don’t fully understand why.
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One consequence of this being a relatively new trend is that young patients often struggle to get a quick diagnosis. I had warning signs before that night in July that were missed – the discovery I was suddenly severely anaemic in April, an earlier bout of mysterious, painful “gastro” in June. It didn’t help each of these problems was dealt with by a different doctor, given how impossible it is to see a regular GP.
Within 12 hours of being discharged that July morning, I was on my way back in an ambulance, in more pain than before. This time I was admitted and spent a week in a ward as doctors explored a range of possibilities. Bowel cancer was never mentioned to me. At one point I was prepped for surgery on my appendix, but it didn’t go ahead after the surgeon was declared a close Covid contact.
A few days later another doctor mentioned to me they had run tests for tumour markers – indicative but not diagnostic tests for cancer. Mine were elevated. Still, I was discharged again, told to follow up with doctors from home in the coming months.
A week later, the same symptoms returned. Another ambulance, four more days on the ward, and then a colonoscopy.
I was moved to a private room, Mick was granted an immediate visitor exemption, and a doctor delivered the news. It was a caecal adenocarcinoma, a tumour in part of the digestive system, close to the appendix, that had spread into surrounding lymph nodes. In short – bowel cancer, stage 3C.
“Stage three isn’t good right?” I asked a doctor later.
“It’s better than stage four,” was his reply.
Mick and I cried together and called my family before his visitor exemption quickly expired. I texted my groupchats, Googled bowel cancer and then quickly decided never to do that again. My Co-Star daily horoscope arrived the next morning, telling me “a proud heart brings misfortune”. I deleted the app.
Cancer patients get a lot of praise for bravery but it’s not like you have a choice. Far from a battle you arm up for, I found cancer to be a disease that renders you passive, immediately – something to accept and yield to. In all my time being sick, I only saw one person storm out of the hospital in a fury. “No cunt is going to stop me,” a young woman declared as she exited the ward, and no cunt did. She came back, days later.
The delay of three weeks from my initial ED presentation to my diagnosis wasn’t medically significant – it wouldn’t have changed my outcomes, I am told. But I can’t help but wonder what would have happened had I not been so insistent about returning to the hospital over and over, had I found a way to live with the pain. What would the outcome have been for someone less assertive, or less able to communicate?
It was also apparent how shocked many individual doctors were that someone like me had cancer. One kept reassuring me I hadn’t “caused” my illness. The rise in gastrointestinal cancers is often largely attributed to poorer western diets, more red meat consumption and rising obesity. I had no family history of cancer, had been an on-and-off vegetarian most of my life and had never been overweight. Doctors kept telling me how young and fit I was, which was great for my ego at an age young women are usually told they’re hitting a wall, but felt like it was missing the point – maybe these factors don’t explain the whole picture? Maybe those biases can work against diagnosis in some cases, not to mention sorting patients into awful categories of the deserving and not deserving unwell?
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Cancer is the pits at any age. A draining, scary, expensive, isolating, dogshit illness, whether you’re 36 or 86. But the time of life you get cancer will change your experience of it dramatically, and that it’s affecting more young adults means some of those experiences should shape how we treat it.
Almost immediately after my diagnosis, I was booked for major surgery. I would also need six months of chemotherapy.
Cancer treatment is hard on your body – but it can also hit your finances. Emergency treatment is free in public hospitals, but every chemo and oncology session started with swiping my debit card because Medicare only covered partial costs. There are drugs to be bought, parking to pay for. Then there is the endless time off work. I had secure employment, sick leave, a sympathetic employer and a union that offered to help. I was fortunate, but many are not. Given how many young people are in insecure work, how pitiful jobseeker is (thousands of Australian cancer patients are forced on to the poverty welfare payments each year) – these costs need urgent attention.
The hardest part for me though was grappling with the potential loss of fertility that can come with cancer treatment, a huge burden for younger patients. I wanted children, but now had to confront the possibility it wouldn’t happen.
A week after surgery, still bandaged and recovering, and a month before chemo, I began “fertility preservation treatment”, or freezing my eggs. Mick, who had gone from my relatively recent boyfriend to carer very quickly, started giving me daily hormone injections in the stomach, in the gaps between the still-fresh dressings.
The first time I went to have my eggs extracted, there was no heavy sedation (it was not offered in that public hospital), only a local anaesthetic which I found minimally effective. The pain and distress were unbearable to me and we stopped halfway through. I told the doctor I wanted to delay chemo to try again and she said to me: “Your life is more important than a hypothetical baby.”
She was right, but what a choice.
We were able to squeeze another round in though; I paid about $1,000 to be put to sleep the second time, and it was more successful.
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Anne Boyer wrote that live or die, people with cancer in popular narratives are cast as “angels of epiphany”, delivering lessons and “patho-pornography” in their recovery or from beyond the grave. Cancer is scary, we want to believe there is purpose in it.
I don’t know what I learned from my experience, except that I hated it, that healthcare should be free, that the friends and family who supported me are all beautiful legends, and that we can’t do enough to work towards better understanding and treatment of this disease.
Maybe it did better allow me to accept uncertainty. My surgeons did a brilliant job. I rang the bell at the clinic after my final chemo session, thrilled but knowing it might not be the end. A month or so later, my doctors declared “cancer not detected”, the best result you can hope for. I have been cancer-free for more than a year now. It’s possible it will return, but it’s also very possible that it won’t.
Cancer ripped me out of my young adulthood in many ways: it made me confront my mortality, it changed my relationship. I crossed the thin line that exists between good health and illness that many people can remain blissfully ignorant of until they’re much older.
Now I am back, in a way, lucky to have lost only time (plus a few bits of my insides you can live without). My body handed me a new surprise last summer, also heralded by waves of nausea. In early January, I found out I was pregnant.
My baby’s arrival is weeks away, my scarred tummy is round with new life.
Josephine Tovey is deputy national news editor at Guardian Australia
