Matt Stonham was diagnosed with a rare form of brain cancer in 2015, four days before his 30th birthday.
"I was playing a game of football, and I was losing the use of the right-hand side of my body intermittently," he said.
"Then I've had a seizure and collapsed on the field."
He was diagnosed with a grade 2 oligodendroglioma tumour, and he and his wife found themselves thrown into navigating an unfamiliar healthcare system.
Matt's brain surgery scar is still visible. (ABC News: Ross McLoughlin)
Matt is fortunate enough to have two alternating brain cancer nurse coordinators looking after his increasingly complex needs.
"They always message and say, 'hey, don't forget your appointment here or your appointment there' and it's excellent," he said.
"It takes a lot of strain off me and my wife trying to, you know, navigate with a young child as well.
"I can't imagine life without their support."
But with only about 20 full-time equivalent brain cancer nurse coordinators in Australia, Matt is one of the lucky ones.
Rare but deadly
Brain cancer is regarded as one of the most difficult diseases to treat and kills more adults under 40 than any other cancer.
Elise Greedy is a brain cancer nurse coordinator working for the Mark Hughes Foundation in Newcastle, New South Wales.
She is one of the nurses who cares for Matt.
Elise Greedy says she's proud to work as a brain cancer nurse coordinator, providing comfort at an overwhelming time for patients. (ABC News: Ross McLoughlin)
"I've been in this job for a few years, and prior to that, I was working in neurosurgery. So, it's probably been about three years now with the foundation. I'm so proud to work with them," she said.
Elise helps her patients at an often critically vulnerable time of their life.
Coordinating scans, blood tests and providing education about the cancer is just a part of the service brain cancer nurse coordinators provide.
"We love seeing them … and trying to minimise the stress that navigating the healthcare system can put on them so they can focus on what they love and who they love," she said.
"We speak with people quite a lot around initial diagnosis. We have a lot of contact, because it's all new, and understandably, it's all absolutely terrifying and overwhelming.
"We've got these skills. We've got the knowledge of the healthcare system, and we want to share it.
Some patients without nurse care
Emily Cooke at the Canberra Head to the Hill event last year. (Supplied: Gerry Tye)
Emily Cooke was five years old when a scan revealed she had an incurable ganglioglioma brain stem tumour in 2018.
The Cooke family live in the Victorian port city of Geelong and despite receiving support with the NDIS, they don't have a hospital-based navigator.
"The hardest part is being between a regional hospital and a major hospital … It's absolutely exhausting. You are left to work it out all on your own," Emily's mum Allison said.
She said she'd welcome the support of a nurse coordinator.
"This funding should be managed by organisations who are engaged with the brain cancer community and understand their needs,"
Allison said.
Allison says it can be challenging living between a regional and major hospital. (Supplied: Gerry Tye)
Impacts are wide-ranging
The impacts and symptoms of brain cancer invade all aspects of a patient's life and become more disabling over time.
They can experience significant changes in behaviour, both physically and mentally, that require specific support services and therapies.
The impacts of brain cancer can invade all aspects of a patient's life. (Adobe Stock: Richman Photo)
A 2024 report studied glioblastoma brain cancer patients in Hunter New England over a seven-year period.
Elise said the report authors found "that the length of hospitalisation was reduced by 25 per cent in those with a brain care coordinator."
"They also found the number of hospital presentations and the overall length of stay was significantly reduced for people who had a brain care coordinator, as opposed to people who didn't," she said.
Elise speaks with Matt in a consulting room at the Hunter Medical Research Institute. (ABC News: Ross McLoughlin)
The charity Rare Cancers Australia (RCA) has been allocated $4.4 million to support brain cancer patients in its navigation program under the federal government's Australian Cancer Nursing and Navigation Program (ACNNP).
RCA said it remains committed to ensuring everyone with rare cancer gets a "dedicated cancer navigator" as early as possible.
"Commonwealth investment last year was due acknowledgement of the unmet needs and complexity people with rare and less common cancers face and we are pleased to have had that recognised," Rare Cancers Australia CEO Christine Cockburn said.
The Australian Brain Tumour Collaborative (ABTC) is an advocacy group working to identify key gaps in services and support for people impacted by brain cancer.
Craig Cardinal is the chair of Brain Tumour Alliance Australia, an alliance of nine brain cancer charities. (Supplied: Andrew Cunningham)
ABTC chair Craig Cardinal said federal funding has fallen short and the modelling for how funding is assigned to brain cancer care is "ill-informed".
"There's around 23 nurse navigator care coordinators currently in the system, none of which the government funds," he said.
"The current model is one nurse navigator care coordinator per 70 brain cancer patients, as it currently stands, from what not for profits are trying to fund.
"That's not proportional to the impact, and it's not proportional to how governments fund other cancers.
"It is not appropriate or realistic to assign funding to another organisation that doesn't have the understanding or resources to implement the solution."
Federal Health Minister Mark Butler defended the decision, saying these are "decisions taken at arm's length by the department and that's the proper way to operate a government".
"The department went through a process to ensure that some of the specialist tumour organisations were still able to provide some of that tumour-specific advice and information," he said.
Long walk ahead
Matt is currently in training for his cancer awareness walk which will take place in June. (ABC News: Ross McLoughlin)
Matt is now in training to walk 150 kilometres from Sydney to Newcastle in June, to help raise money for brain cancer research for the Mark Hughes Foundation.
He said he expected the walk to test him.
"That's what I want — as long as we can raise money and keep raising it, then I'll do anything like that," he said.
For Matt, it's more than just about the funds — it is also about meeting others on the same cancer journey.
"It's just a good thing to do, to show support for these people who have been to hell and back."
