Sitting at home feeling sick and bored three months into aggressive chemotherapy, Jacob Purcell looked in the mirror and decided to give his brain cancer a name.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
With a dark sense of humour, and newfound fondness for cancer jokes, he decided to call it "Millon" - a posh pronunciation for his melon, where doctors found a tennis ball sized tumour last September.
"He's a fancy motherf---er, my cancer," Mr Purcell said.
"I walked into the bathroom that day, and looked at myself and I went, 'oh really?'. I decided I was going to give him a name and have a chat to him every day.
"I said, it's not 'mate, go away', like you can stay in there, just don't do anything, just sit there, we can have lots of years together."
A year ago, the 28-year-old Dapto man was given 12-to-18 months to live after being diagnosed with a rare, fast-growing brain cancer - a Grade 4 astrocytoma also known as glioblastoma - which is almost always fatal.
Desperate to make the most of the months he had - and eke out as much time as possible - he and his then-fiance Maddi have seized every opportunity.
"We've done stacks. Lots of fun stuff," Mr Purcell said.
They got married in November, where Maddi got up in front of family and friends and shaved her head in her wedding dress to show Jacob that he wasn't doing this alone.
"Jacob made a comment that he felt like people always looked at him and knew he had cancer, and his scar was fairly prominent," he said.
"I told him he wasn't going to do this himself, so I just did it, and said 'now they can stare at both of us'."
Since then, they honeymooned in Port Douglas, took their four-year-old daughter Lulu to see snow for the first time, joined their loved ones on camping trips throughout the South Coast and have just returned from Uluru where they marked a year since Jacob's diagnosis.
Maddi is pregnant again, with a baby brother for Lulu due in December, and Jacob's cancer is in a holding pattern - not gone, but stable - after he took part in a new medical trial for glioblastoma patients.
"It will never be classed as cured or in remission, but the last scan showed there is no blood flow going to where the tumour was previously, or where there are little bits left," Ms Purcell said.
"It's not getting any bigger and it has shrunk in size, so we just say it's sleeping. We're kind of at a standstill."
Mr Purcell remains determined that he will negotiate to have as much time as possible with his new friend Millon, and will continue making the most out of life in the meantime.
On October 22, he and his family will join an expected 400 people at the seventh Illawarra Walk 4 Brain Cancer at Beaton Park, to raise money for research into little known cancers like his.
The couple attended the walk last year, in the early days of his diagnosis, and found hope as well as other people who could relate to what they were going through.
"We're not medical professionals, so we can't contribute to research but if we can raise money so people can keep working and fighting for other people with cancer, then we can help," Ms Purcell said.
The event runs from 9am, with the walk expected to kick off at 10am. There will also be raffles, entertainment, a jumping castle, face painting and food trucks.
Kate McIlwain
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
