From childhood cancer survivor to community advocate

At 11, Seamus’ life changed when he was diagnosed with a rare bone and muscle tumour – a diagnosis that would redefine his childhood.

“I was diagnosed a couple of months after I moved to Brisbane with my family,” said Seamus, who moved from Coolamon, a small country town near Wagga Wagga with his family prior starting high school.

“I’d just started a new school and within a couple of months after moving I notice my left thumb started to swell and was really sensitive.”

After further tests and a biopsy, Seamus was diagnosed with a bone and muscle tumour known as Ewing sarcoma. “Within six days, I went from being a ‘normal kid’ to starting chemo. It all just happened, like the flick of a switch.”

What followed was a whirlwind of treatment and surgeries. Over the course of a year, Seamus underwent around four different types of chemotherapy as well as multiple operations to remove the tumour in his thumb and replace it with a bone from his right leg.

“I was in hospital for about three months of the year having treatment and then had a break from treatment for the main operation before resuming treatment for another 9 months.”

“I randomly out of the blue got psoriasis, head to toe, covered,” one of the side-effects from the treatment, said Seamus. “I called myself the polka dot kid. So not only was I a kid on chemo with no hair and looked like death, but I was also covered in bright red dots.”

After 12 months of treatment, hospital visits and attending school for approximately five days that year, Seamus’ mum received a call from the nurse to say that all his tests had come back clear, and he was officially in remission.

“I remember the day well. I was playing on the Xbox, and mum gave me the biggest hug I’ve ever had and told me the news. After she walked out, I was sitting there in shock for 30 seconds. I'm like, ‘What do I do now?’"

Now, at 26, Seamus is the youngest member of Cancer Council Victoria’s Community Advisory Network (CAN), a group shaping the future of cancer care in Victoria. His mission is to turn his experience into hope for others.

“As any cancer patient experiences, it’s not just the cancer diagnosis that impacts you, it’s all the knock on consequences of the treatment, the change in lifestyle, the impacts of changes in finances, the medication you are on, the emotional burden on you, your family and your loved ones, and the implications of other illnesses along the way.”

The impacts of cancer stay with you long after the cancer is gone. As a member of the CAN, Seamus is now able to give back and use his lived experience to provide advice to improve cancer outcomes for other Victorians.