Sam and Sally were enjoying their first year of being parents when a diagnosis changed everything.
A year after welcoming their son, Oscar, to the world, Melbourne couple Sam and Sally received news no new parent wants to hear.
“I was diagnosed with T-cell acute lymphoblastic leukaemia (T-cell ALL), which is a type of blood cancer.”
“Straight after the diagnosis, I don’t remember a whole lot. I pretty much went numb,” Sam says. “You can’t run away from a diagnosis or news like that.”
“After Sam’s diagnosis, I just kept thinking, ‘We have a baby, how is this happening?’” Sally says.
“It felt very surreal. There were so many logistics to navigate between parenting and the hospital,” she adds. “It felt like the ground beneath you kept shifting. Life completely changed.”
Sam’s diagnosis also cost him many precious moments and ‘firsts’ with little Oscar, given so much time was dedicated to treatment.
The impact of cancer as a young family is huge, particularly as a new father. Your time to bond with your partner and child is taken away from you. You are not able to contribute in the way that you feel you should be able to.
Sally remembers wondering if she’d lose Sam and become a single parent.
“I felt very isolated in the experience, out of phase with people my own age. I felt it was unfair that it was happening when we had a one-year-old baby.”
Being referred to as Sam’s ‘carer’ was somewhat jarring for Sally.
“Sam was able to manage his medical treatment; he wasn’t incapacitated,” Sally shares.
“I thought, ‘This is my person, my key relationship’. I always felt like Sam’s partner as opposed to his ‘carer’. That term didn’t resonate for me, personally.”
Sally encourages partners of people with blood cancer to keep an eye on their own health. “Be really clear about what you need to stay well – because it’s a marathon and you really can’t take on every single thing.
“There’s this assumption that when you’re the partner, you’ll be happy to be the primary medical information person, and you’ll be happy to talk about that all day, every day with every family member, every friend. I couldn’t do that. So maintain your boundaries.”
Sam found hope through connections with others living with blood cancer
“Through the Leukaemia Foundation, I was introduced to people who were well into their survivorship, 15, 20 years after their diagnosis. That really offered me not just hope, but faith,” says Sam.
The Leukaemia Foundation helps people living with blood cancer connect with others who understand the challenges of diagnosis, treatment and survivorship. Through peer support programs, lived experience networks and community connections, Australians affected by blood cancer can share experiences, learn from one another, and find reassurance they are not facing the journey alone.
Sam also did a great deal of research on treatment options that aligned with his own goals and values. He encourages others to consider the same.
After more than two years, Sam completed his treatment and reached remission. The focus shifted to recovering both physically and mentally.
Today, Sam continues on his recovery and remains optimistic about the future
“I’m actively looking for work, which is a big step. But I’m also quite hopeful given the level of health that I have now, and the ability to continue to restore that.
“Life is looking very different now. I’m a very different person than the one that got diagnosed. I’m fortunate to have a grounded community of people around me. I feel as though I can actually be the authentic version of myself, which wasn’t the case when I got diagnosed, and that’s a real blessing.”
Throughout their experience, Sam and Sally also discovered first-hand the high costs of being diagnosed cancer – a hidden but national crisis
A recent Leukaemia Foundation survey found 1 in 8 respondents also reported missing, delaying or cancelling care because of financial pressures. Some people pay $20,000 out of pocket annually. This needs to change.
Sam and Sally made a key decision that ended up saving the couple from immense financial pressure.
When Oscar was born, Sam took out an income protection policy to give his family peace of mind and security.
“I went through the process of getting income protection and if I had not done that, we would be in a financial mess right now,” Sam recalls. “It really made a huge difference when I was going through the initial diagnosis.
“It meant that I didn’t have to work whilst I was going through treatment and I was able to focus on healing myself and being with my family, which was a real gift.”
It also gave Sally the option of dropping down to part-time work, giving her more time to navigate the rollercoaster of a partner diagnosed with blood cancer while parenting.
The Leukaemia Foundation supports Australians navigate the financial burden of blood cancer. Through accommodation support for patients and families from regional areas alongside trusted information and education services, we help people navigate financial challenges and make informed decisions. But our efforts are not enough.
