A brain cancer diagnosis in Coleambally means travelling 630km from home to Sydney for treatment.
That has been the new reality for Bernard ‘Bernie’ Star after being diagnosed with stage four brain cancer in 2017, then aged 41.
He says he has travelled “thousands of kilometres” - often away from his wife Samatha and their four children in Coleambally - to Sydney for two surgeries, three separate rounds of radiotherapy and countless medical appointments.
His story is being shared as a new fundraising campaign by Can Assist - Can Do The Distance - is launched to “lessen the inequities” created by distance.
It asks people to choose an activity for August such as walking, swimming, or running and then setting the goal for how many kilometres or hours you will travel for the month.
As well as raising vital funds to support those undergoing cancer treatment, the initiative aims to highlight that country residents are more likely to contract cancer, experience higher mortality rates and are 17 times more likely to experience geographical or financial barriers to care.
When Bernie first began experiencing “cracking headaches”, he thought it was because he’d bumped his head while changing the points on his combine.
It was winter crop sowing time at the Star family farm near Coleambally.
“It was just when I was bending over and picking up things.
“I’d get these really, really bad headaches, but they’d only be for a split second.”
The first doctor Bernie went to suspected he’d pinched a nerve in his back, which led to various chiropractor and physiotherapy appointments.
But the headaches didn’t stop.
The situation escalated a couple of months later after the second doctor Bernie saw told him to get a CT scan.
And he’s thankful he did.
“As I was coming back over the hill from the airport, they rang and said, ‘Are you Bernard Star?’” Bernie said.
“I said, ‘Yes’. They said, ‘Call in straight away to emergency’.
“So I wandered into the emergency and said who I was, and they were a bit confused.
“They went, ‘Oh, we thought you wouldn’t be walking but come through’, and from there, they basically thought I was having a stroke.
“It wasn’t a stroke, it was actually a tumour.
“They didn’t find that out until after I went to Wagga by ambulance, and then in an air ambulance from Wagga to Sydney.”
Almost five months after his first doctor’s appointment, and 630km away from his family, Bernie was diagnosed with brain cancer.
Initially, doctors told him it was a grade three astrocytoma, which is a rare and malignant form of brain cancer.
Bernie said it wasn’t until after they had done genetic sequencing they realised it was a glioblastoma brain tumour.
“When they actually did that sort of breakdown, they found it to be stage four glioblastoma, which is pretty well the worst you can get,” Bernie said.
“Basically, they thought 18 months to two years would be a pretty good number – and that was back in 2017, so I’m still going alright.”
Over the next four years, Bernie would make multiple trips back and forth to Sydney for two surgeries, three separate rounds of radiotherapy (each 4-8 weeks long) and countless medical appointments.
And then in 2021, the scans picked up another one.
Bernie was told it was “a recurring tumour”.
This meant four more weeks of radiation therapy in Sydney in February this year, and now immunotherapy and chemotherapy in Griffith.
While closer than Sydney, it’s still a 140km return trip to Griffith every two weeks.
For Bernie, one of the hardest and most taxing parts is the amount of time spent away from his family.
It has meant not being able to be there for many special occasions with his kids.
Although the Stars’ children - Johnny, 15, Izzy, 13, Marcus, 12, and Gemma, 9 - are older now, Bernie said trying to explain to them why dad wasn’t home was not easy.
“A couple of them were old enough to know and understand what was going on, but the little ones didn’t have any understanding of what was going on,” he said.
“When you hit the kids with the fact that dad might not be here in 18 months, it’s a pretty big pill for them to swallow.”
But there has been some good news since Bernie’s last check-up in Sydney.
Only last week he learned the tumour picked up earlier this year has reacted well to the radiation therapy and other treatment he’s had since then.
“They were happy with it,” he told the Southern Riverina News.
“I was actually considering taking my life insurance and my TPD out and claiming them now.
“But then she said, ‘Look, I think you’ll have a little bit more (time) yet. I think you can be talking in 10 years instead of two years anymore’.”
Looking back over the past six years, Bernie said it has been important to have the right support and advice after a cancer diagnosis.
He said it is particularly important for people in country areas.
“I’d recommend that anyone that really was in that position, should go to the district Can Assist office and talk to them. They see all of the things that they can help with and do along the way,” he said.
“That’s important because it’s very overwhelming when you get down to Sydney and you get met at the door by accountants who are telling you this is what it’s going to be worth to get your treatment.”
As a private patient, Bernie said he wished someone told him not to go for an MRI at a private hospital “because it’s a lesser quality machine and it’s going to be $1,200 out of pocket”.
“The public system, they’ll bulk bill you, their results are just as quick and it links to the whole public system so you’ve got those on file back in Coleambally, as well as in Sydney,” he said.
“For certain services, you’re better off going as a public patient.
“You just need a bit of guidance around those things. That would make a big improvement too.”
Bernie said “the more information on where you can go, and the best way to do it”, the better.
You’re also going to need “mental health support too”, he said.
The cost to participate in the Can Do The Distance initiative is $20 per person, and you can participate as an individual or a team.
The final steps are to create your fundraising page, set your fundraising goal and have your friends, family and community donate to the cause.
For more information, go to https://candothedistance.org.au.