Most of us assume the same thing about cancer in Australia: that it's covered. Medicare, the public system, a fight that's medical rather than financial.

Earlier this year, the Leukaemia Foundation asked 655 Australians living with blood cancer what their diagnosis actually cost them financially. To mark the launch of the new research, I sat down with two remarkable humans - one who has lived it, and one who has spent the last two years measuring it.

^{TDA Team Note: We made this edition with the Leukaemia Foundation. The survey numbers are theirs, and we've flagged that every time. Everything else we checked ourselves.}

Allannah Clarke is 42, a mum of three, and lives in Wilton, south-west of Sydney. Her first cancer turned up in 2023. "I had triple-negative breast cancer completely out of the blue, no family history of breast cancer," she told me. "Just felt a lump."

Surgery, chemotherapy, radiation, more surgery, then immunotherapy. She'd been back at work for just two weeks, still mid-treatment, when she got sick again. But this time, it was a form of leukaemia. 

"I actually got it from the breast cancer treatment," she said. The treatment that saved her from the first cancer had caused the second one.

As treatment for a second form of cancer began, Allannah quickly realised the differences in acute blood cancer approaches. The treatment had to be completed in hospital, not at home. Family and friends could visit far less than if she was in another ward, for fear of carrying infections in immunocompromised environments. Allannah’s three children, all under 12, weren't allowed in her haematology ward at all to be by their mum’s bedside.

Bill Stavreski is the Leukaemia Foundation's Head of Research. He ran the survey.

"Most of the hospital costs, if we're talking public, not private, are covered for the treatment and the care," he told me. "But so much sits outside of that, when people do leave the hospital - going to see their GPs, their specialists, the medications."

In the survey, medications were the most common out-of-pocket cost, reported by 81% of respondents, followed by travel to treatment at 71% and parking at 51%.

Allannah added up what she'd spent on prescriptions at one local pharmacy: $4,500 over 24 months.

I thought it was interesting that hospital parking seemed to be the cost no one sees coming. Bill said hospital car parking was the biggest daily cost the research found for metro patients, with some families "spending well over $200 to $300 a week" at the boom gate. For Allannah, the rules weren't even consistent: her ticket was validated for haematology appointments, but not for trips to the hospital for blood tests or other specialists.

As my grasp on the cost of blood cancer - money going out - grew, as did what felt like an even larger problem: the money that stopped coming in.

"During my leukaemia treatment, I got the news that my employer had lost a major government contract, and pretty much I had no job to return to" Allannah said. Hospital parking no longer felt like the biggest financial barrier car-wise: her husband cleaned out her company car and returned it while she was still an inpatient.

"It wasn't even like my husband could keep working," Allannah noted, "because he then had to manage three kids at home."

The Foundation's research found nearly all respondents either reduced their hours or left work. It doesn't stop with the patient, Bill said: "We heard many stories that came through where people had to temporarily or permanently shut their business."

Allannah had already withdrawn about $50,000 from her superannuation, on compassionate grounds, to pay for four surgeries. Then the house went. "We weren't able to hang onto it financially, so we had to downsize."

"If I thought at 38, before I was diagnosed, where I would be at 42, it's a completely different place to where we actually are," she said. "I feel like I've gone back. I've literally worked my whole life for nothing."

Watch: Allannah and Bill chat to Sam about the hidden cost of blood cancer here.

In the survey, about one in eight people said they had missed, delayed or cancelled treatment because of money. "That was the most significant result that came out," Bill said.

However, Bill was careful about how far his own research goes. Of the one in eight who missed or delayed treatment, "what we don't know is what are the consequences that it's having on their long-term health."

Blood cancers like leukaemia are only detectable once you actually have the cancer and require treatment - there are no screens that can pre-empt a diagnosis, potentially allowing a family to do some financial planning. Bill stressed the impact of this medical trait of blood cancer: if you get told you have acute blood cancer, your life grinds to a halt, and you need treatment today.

There's no warning with an acute blood cancer diagnosis, and no window to get your affairs in order first. And across two diagnoses, four surgeries, months in hospital and a house sale, this is the thing I haven't been able to shake: Allannah says nobody had a conversation with her about how she was going financially.

I asked her what she wished she'd been asked.

"I think it would've been really helpful to go, 'What are your plans? What are you doing? You and your husband can't just stop working', which is what we did, and we were just thinking about that day, not two days, or a month down the track."

I asked Bill what people around someone going through treatment can do.

"First and foremost is really just asking the question whether they're financially okay," he said, unaware at that point of Allannah's experience. "Not everybody has the capacity to support. But importantly, making sure that it's not impacting their treatment or their recovery."

Now in remission from both cancers but dealing with ongoing complications, Allannah gets a particular kind of advice a lot. She says it comes from a privileged position. Once you've had cancer, it goes, you should travel and spend time with your kids.

"Yeah, that would be amazing if we had any money," she said. "I would love to be able to just not work at all and spend every single moment with them, but unfortunately that's just not the reality."

I put it to her that we find it hard to hold two ideas at once. On one hand, we know that nothing matters more than your health, and that you can't put a price on getting well. On the other hand, somewhat uncomfortably, getting well does actually have a price, and somebody has to pay it.

Most of what a blood cancer diagnosis costs a family will never show up in a survey. The measurable part is the money - and we’re only just opening up conversations about how important that part is to talk about.

One in eight Australians with blood cancer miss, delay or cancel treatment because of financial pressure.

A diagnosis is already hard enough without having to worry about how you'll pay for it - especially when, for example, current subsidies only cover less than half the daily cost of staying near life-saving treatment. That's the reality the Leukaemia Foundation is working to change through its Cut the Cost of Cancer campaign, which is calling for better support so no one has to choose between their health and their finances.

Add your voice and sign the petition for better financial support for people with cancer.