Kerry Boyenga was diagnosed with Australia’s most common type of blood cancer. But she said it wasn’t even on her GP’s radar.

Kerry is a First Nations woman living in Moruya, regional New South Wales.

For most of her life, Kerry has been a classroom teacher. She retired years ago after developing a rheumatological disorder called Sjogren’s syndrome. One of the key symptoms is experiencing dry eyes and a dry mouth, exacerbated while teaching. “I really picked the worst career to have with Sjogren’s,” Kerry laughs.

Boxing Day in 2016 was the first time Kerry felt something was wrong. “I had a bit of a sore throat and a tender spot on the side of my neck and thought, ‘that’s a bit touchy’.”

At that stage, it felt like a little lump. Kerry visited her GP who advised it was a swollen gland.

The lump grew, but Kerry was assured she was susceptible to swollen glands due to the Sjogren’s syndrome and that eventually, it would go down. It grew to the size of a tennis ball.

“It bothered me because it just kept growing and I felt there was something wrong. I just felt that something more needed to be done.”

Unsatisfied, Kerry contacted her rheumatologist, who got back in touch with her GP to discuss further investigation of the lump. She had two biopsies done in Moruya, but they were both inconclusive.

“One of the challenges of living in a regional area is needing to travel to big cities for diagnosis and treatment.” Kerry had to travel to Canberra Hospital, two hours from home, to have a surgical biopsy done.

A few days later, the test results were in. She learnt she had non-Hodgkin lymphoma, a type of blood cancer.

“I knew absolutely nothing about blood cancer before I was diagnosed.”

It was a long time before Kerry was diagnosed

From the initial GP visit to the oncologist appointment – it took about six months for Kerry to be diagnosed.

This wouldn’t be too surprising for a rare cancer, but non-Hodgkin lymphoma is Australia’s most common type of blood cancer; about 7000 people are diagnosed each year.

“I thought my diagnosis was very slow. By the time I was diagnosed, I was at Stage 2.”

By the time Kerry was diagnosed, the cancer was at Stage 2. “I’ve had friends with the same thing that weren’t diagnosed until Stage 4. Friends who haven’t survived that were strapping, young people, just not diagnosed soon enough.”

“I honestly believe more needs to be done so that people can be diagnosed earlier, so they’re not dying from these things.”

“I wonder whether doctors know enough about blood cancer. It’s important to diagnose people quickly. I know a lot of that falls back on us as individuals, if we’re not feeling well, we need to let people know, certainly our doctors.”

Kerry’s story is a lesson – that if something doesn’t feel right, continue to advocate for yourself and your health.

The added challenges that come with living in a regional area

Kerry experienced several complications during her treatment, including urinary tract infections, shingles and postherpetic neuralgia, which causes a burning sensation in the nerves and skin.

Cancer and its complications are challenging enough, let alone when you don’t have close access to specialist medical professionals.

“I had to travel to Canberra for my first treatment and subsequent appointments with my haematologist and rheumatologist. My husband had to take time off work. We had our own business; if he didn’t work, he didn’t get paid. If you have your own business, you don’t have any sick leave, so it impacts your life a great deal.”

“There’s a cost of that travel, as well as taking the time to go.”

Kerry was later diagnosed with heart failure. But incredibly, in the same moment, the doctor told her she was in remission from blood cancer.

What cancer takes, and gives

Cancer took Kerry away from her work and home. It compromised her independence and immunity. She says her journey was long and difficult, but she always maintained hope.

“I never once thought I was going to die. My family did. The thing about cancer is, if you’re the one with it, how you react to it will determine how everybody in your family is going to react.”

“I felt I had to be incredibly strong, because I could see my family were afraid. I didn’t find that hard at the time. It disturbs me more now.”

“I used to say to them all the time, ‘Think about the good times and all the years we’ve had together because that’s what you’re going to be left with’. And then I would finish that with, ‘Anyway, I’m not going anywhere. I’m here for the long run.”

Post-cancer, Kerry doesn’t take anything for granted.

Perhaps one of the best learnings she shares is this: “I don’t suffer fools anymore. I just haven’t got time for that.”

“I’ve decided there are so many more important things in your life than silly, trivial things. I just don’t put up with things that I don’t have to anymore. And I’ve probably become more outspoken just in my attitude to things. I don’t know if it’s a good thing or it’s a bad thing. But a lot of my friends love my forthrightness.”

Kerry’s cultural pride – and her warning

While Kerry did not face any discrimination during her own treatment, she’s all too aware of the ongoing discrimination of First Nations peoples. “At certain places in our community, including the hospital unfortunately, some of our Aboriginal people have been treated racially, badly.”

“I know people who have felt people didn’t want to take care of them.”

“I’d like to think that if people were unwell, they wouldn’t be treated any differently from anyone else.”

First Nations people are 40% more likely to die from blood cancer than non-Indigenous Australians.

Kerry is passionate about educating the community on these issues, and to understand First Nations communities more.

During her cancer experience, Kerry realised she wasn’t ready to retire. The drive to get back into teaching was stronger than ever.

Kerry has since returned to teaching, but in a different way.

She now teaches her ancestral mother tongue, Dhurga, which is the Indigenous language of the Moruya area. It’s classified as a critically endangered language.

She started by proposing to the principal of a local primary school to introduce Dhurga language lessons. From there, several other schools and community groups have engaged her to teach. She’s even co-written a Dhurga dictionary with her siblings.

Seven years later, she’s still teaching. “And I’ll teach until I can’t teach anymore.”