After living with the disease for almost the entirety of her teenage and adult life, 23-year-old Siobhan Hoy is no stranger to the long-term side effects of blood cancer.

At just 14 years of age, Siobhan Hoy’s life would change forever in 2015. “I was a fit, healthy teenager with a few bad bruises and a couple of bloody noses,” said the now 23-year-old. “A blood test and one phone call later and my life changed completely.”

“At the time I was going to school, being a typical 14-year-old. I probably had a bit more attitude than most. I was playing hockey at the time. I was a goalkeeper, playing pretty high-level hockey. So, I was getting some pretty gnarly bruises, [but] that was part and parcel with the territory.”

“But about a week before I got diagnosed, I had a really bad blood nose, it probably lasted about 20 minutes.”

Her parents decided to take her to a GP, and after a routine blood test, she was ordered to return immediately.

Being 14, Siobhan didn’t know exactly what leukaemia was, or what it meant. So when she heard the word come out of her dad’s mouth, she wasn’t sure what to think, or how to feel. But she knew it wasn’t good news.

“Dad said ‘it looks like you’ve got leukaemia.’ And I knew that it wasn’t a good word. But at the time, I honestly didn’t know [what it was]. I think the closest thing that I knew about leukaemia was ‘My Sister’s Keeper’. Not a good reference point.”

At the time of her diagnosis, Siobhan was living in Lawrence, NSW, a small country town 647km north of Sydney. Because of this, Siobhan and her family were already at an immediate disadvantage.

Only 28% of Australians live in regional and remote areas, but they make up 41% of all blood cancer patients like Siobhan.

“My first diagnosis was really hard. I didn’t want to talk to anyone and felt so embarrassed and ashamed of my illness,” remembers Siobhan.

“I wouldn’t leave the room for anything until my mum convinced me one day to go down to see the Leukaemia Foundation support staff in the office.”

Siobhan and her family stayed at a Leukaemia Foundation Patient Accommodation Village while she received life-saving treatment.

“I was introduced to Maryanne, a Blood Cancer Support Coordinator you help to fund, and we just clicked straight away. There was no shame in what I was telling her. We would talk about all my teenage issues and she would laugh and reassure me through it all.”

After 10 months in Brisbane receiving treatment while living at a Leukaemia Foundation Accommodation Village, Siobhan experienced that special moment of ringing the bell, signaling the end of treatment.

“I finally moved home from Brisbane after that 10 months, into that school life balance, and then went back to work,” Siobhan remembers.

“And then got another job in Grafton, and got back into my social life, everything was kind of moving quite well. And then finished school, rang the bell, got to do all the fun stuff.”

Everything was going well for Siobhan as she returned to her new life after blood cancer, until she began to feel unwell again.

“Around 18 months after completing treatment, I knew something was up, I knew what was wrong. I was working and I’d come home from work and I’d sleep, and it’s that [kind of] sleep I’ve known before. I had a couple of bruises.”

After running a few tests, Siobhan was once again told by her father that her cancer had returned.

After several tough conversations with both her parents and her doctor, Siobhan packed her bags and headed to Brisbane for treatment, just as she did a couple of years before.

“Life doesn’t always go as you plan. But I got a phone call from the Royal Brisbane and Women’s Hospital, and they said ‘we want you up here’. So, I packed my bags, said goodbye to my dog and to home again, and we drove to Brisbane”.

Siobhan was then told that she needed a stem cell transplant. Luckily, after having all three of her siblings tested, they were all perfect matches.

“My sister Courtney was my donor,” she remembers. On the 6th of September 2019, Siobhan underwent a stem cell transplant, and soon after she went into remission.

Siobhan has now been in remission for five years following her stem cell transplant in September 2019.

However, despite eventually becoming cancer-free, Siobhan still lives with the long-term side-effects of both blood cancer and its treatment.

Between her first and second blood cancer diagnosis, Siobhan was diagnosed with epilepsy, caused by her chemotherapy treatment.

“When they did all the scans on my brain, they found out that it was from the methotrexate. I’ve got a whole heap of grey matter on my brain. The best way I can explain it to people is that your brain’s like coral, and it’s got little fingers on the end. There’s a layer around those little fingers, and the chemo burnt them off. And when they rub together, I have fits.”

And shortly after her stem cell transplant in 2019, Siobhan was also diagnosed with graft versus host disease (GvHD), which was attacking her skin, leaving it extremely dry.

“Living with graft versus host disease now, I wake up every morning and take a mouthful of pills. I go to bed, I take a mouthful of pills,” Siobhan says.

Siobhan has also accepted that after her treatment, she will never be able to have children naturally. But this is a decision that she has embraced and taken ownership of.

“It was my decision. At the time I was 18, and I hadn’t really thought about kids,” she says.

“I’ve come to terms with my situation. Not having kids isn’t the worst thing for me. I’ve got some nieces and nephews. Got a little tribe of them. And then I’ve got all my friends that have kids. So, 100% designated auntie, and I think I’m a pretty good auntie. So I’ve come to terms with that.”

But despite the long-term side effects that Siobhan faces, she ultimately lives life on her own terms and does not let her past dictate her future.

“I try not to limit myself to anything. And I try not to let my health dictate my life,” she says. And importantly, she embraces so much about her blood cancer journey and is thankful for all of the incredible people she’s met along the way.

“I’m not going to pretend that everything’s perfect. Not everything is perfect. But I’m not [going to complain that] I’ve had the worst life. Because I really haven’t. I’ve met some absolutely incredible people through the things that I’ve done. Places that I’ve been. And as terrible as it is, I probably wouldn’t change it. It’s made me the person I am today.”

In September 2024, Siobhan celebrated five years in remission following her stem cell transplant, and she looks to the future with optimism, hope, and plenty of laughter.

“I am a big believer that laughter is a great medicine. I make lots of jokes about the stuff that I’ve been through. That’s my coping mechanism. Because if you don’t laugh, you’ll cry.”

To learn more, you can listen to this episode of the Talking Blood Cancer Podcast hosted by Kate Arkadieff. Kate sits down with Siobhan to discuss her experiences living with blood cancer and the aftermath of her treatment.