It was in early October 2025 that 49-year-old Ben Whitehead’s health suddenly changed.
“In just a few weeks, I went from someone who could run 80 miles a week to someone who struggled to mow the lawn,” he said.
Since then, Ben, who was diagnosed with a rare and debilitating cancer, has been led across state lines to new treatments.
Throughout his journey, which he has documented on social media, he has done everything he can to stay positive and move forward despite the odds.
Ben Whitehead documented his journey on a Facebook page and even created a T-shirt with the page’s name on it. (ABC Southeast SA: Josh Brine)
fateful hospital visit
After being taken by ambulance to a local hospital in Mt Gambier in South Australia’s south-east, preliminary tests revealed Ben had cancer.
At the time, he was advised to go to Flinders Medical Center in Adelaide, about a five-hour drive away, for further tests and a formal diagnosis.
“It will take at least three weeks to actually see a specialist, and that doesn’t mean you can get treatment,” he said.
With encouragement from his family, Ben went to Melbourne’s Peter McCallum Cancer Center, where he was told he had stage 4 peripheral T-cell lymphoma.
“Basically, when I actually arrived in Melbourne, I was on my last breath.”
he said.
“I was very fortunate to be able to follow the path that I took to get to where I am, despite some terrible circumstances.”
Ben Whitehead has tried multiple treatments for his cancer. (Provided by: Ben Whitehead)
Ben was initially diagnosed with a type of cancer that doctors had “never seen before” and was given three months to live.
“This is how they explained it to me. [it was as] If my T-cell lymphoma were to become infected with T-cell lymphoma, that would be extremely rare,” Ben said.
Ben’s clinician in Melbourne, Philip Thompson, said the cancer left Ben feeling generally unwell and in pain.
“If you imagine something growing within a confined space, it can start to press on other things around it, causing pain,” Dr. Thompson says.
“At baseline, [T-cell lymphoma] It is much more difficult to treat than B-cell lymphoma.
”The majority of patients with T-cell lymphoma eventually die from the disease.”
Ben Whitehead named his Facebook page after his poor prognosis. (ABC Southeast SA: Josh Brine)
The beginning of an “unknown chapter”
In the months following his diagnosis, two different types of chemotherapy were unsuccessful and Ben’s prognosis did not improve.
After many phone calls with his doctor, Ben was encouraged to participate in the first phase of a clinical trial.
“They had no other choice…The strange thing is, I’m number one in the world in this trial,” he said.
“Being a guinea pig is great, but mucus in your arm could mean the end.
”That’s your decision. You have to have the drive to be that number one.”
Philip Thompson is a clinical haematologist at the Peter MacCallum Cancer Center. (Provided by: Peter McCallum Cancer Center)
Dr. Thompson said progress in treatment would not be possible without patients like Ben who actively participate in clinical trials.
“It takes a lot of courage to decide to undergo a clinical trial,” he says.
“You have to be willing to take a step into the unknown and trust the people who will give you advice.”
Unfortunately, as of last week, Ben is not participating in the clinical trial after a PET scan revealed new nodular growth.
“This gremlin shows us that it’s just adapting to everything we’re throwing at it,” he said.
“There may be another court case, but I’m waiting for that call.
”It’s another unknown chapter in the journey.”
Ben Whitehead fixes a fake rat tail used in a prank. (ABC Southeast SA: Josh Brine)
Staying positive even in dark times
In an effort to stay optimistic and bring others along on his journey, Ben decided to document his treatment on Facebook.
“I was on the phone eight to nine hours a day just to keep people updated,” he said.
“But in some ways, when people get cancer and go out for treatment, most family and friends don’t see them until they get home.
“I just thought, ‘Okay, let’s document this and get it out into the world.’
”No matter what it turns out to be, just be raw. Let it rip.”
A big part of that journey was also playing pranks with hospital staff.
Ben Whitehead surprised hospital staff with his nipple tufts. (Provided by: Ben Whitehead)
“I went for a checkup and the nurse came in and said, ‘How are you doing?'” Ben said.
“When she stood up, she popped out her pool noodle and fur rat tail and she burst out laughing.
“Then I was seeing my doctor and I had a monitor on at the time and they were just checking my heart rate.
“When I took off my shirt, it actually had nipple tassels on it.
”You need a sense of humor to understand what’s going on.”
He urged people not to “let things go unchecked.”
“If you think something is going on, there’s a good chance it is, because our bodies know what’s going on,” Ben says.
“We have no choice but to listen to them.”