Terminal brain cancer patient Jodie Clarkson has completed her longest trail run as she highlights Northern Territory organ donation laws that she fought to have changed.
After a shock diagnosis in 2017, Ms Clarkson advocated to have the laws changed so she could donate her brain after her death.
"The diagnosis was kind of tough," she said.
Ms Clarkson said doctors originally thought her déjà vu, nausea and fainting were a result of anaemia.
"I actually ended up diagnosing myself, which is kind of bizarre," she said.
Her internet searches led her to request an immediate MRI.
"By the time I'd walked from the hospital back to work, the doctor called and said 'look, can you come and see me, please?'"
Ms Clarkson underwent an operation before she was told she had just six months to live.
Fast forward five years and Ms Clarkson has just completed her first 25 kilometre running event along the stunning Larapinta Trail of the Central Australian outback.
She still lives with brain cancer but is determined to look on the bright side of life.
"From the beginning my mantra has been to plan for the worst and hope for the best," she said.
Changing the laws
Instead of having more chemotherapy, Ms Clarkson chose to have more surgery with Dr Charlie Teo.
She credits him with giving her the extra years with her friends and family.
She now fundraises for his foundation.
Ms Clarkson developed her Operation Live On, a plan with the palliative care team at the Alice Springs Hospital.
"I wanted to donate my organs and my brain to research so that something good could come from my death," she said.
The Northern Territory's Tissue Act didn't allow for non-regenerative tissue to be removed from a deceased person's body so the medical team helped her have the law changed.
ALP member for Gwoja, Chansey Paech, told Northern Territory parliament Ms Clarkson had cleared the way for residents to be able to donate non-degree tissue for research.
"This is Jodie's law," he said.
The changes, introduced by Health Minister Natasha Fyles, amended both the Notifiable Diseases Act 1981 and Transplant and Anatomy Act 1979.
Running to breathe
Ms Clarkson completed her longest run at the recent West Macs Monster trail running festival.
The 25 kilometre trail crossed rugged and rocky desert to the west of Alice Springs.
Ms Clarkson said she fell and hit her head about 8 kilometres in.
"I laughed at the irony of it because you know, my head can't really get any more damaged and there was blood pouring down my face," she said.
A doctor checked Ms Clarkson out and cleared her to keep running after doing a few neurological tests.
She said running on trails around Alice Springs every day helped her breathe.
"My cancer is growing in my thalamus and the thalamus is like the control centre of our brain, which controls movement and breathing is movement," Ms Clarkson said.
"When I wake up in the mornings, I struggle to breathe but … if I get up and exercise my mechanical breathing, it seems to kind of just set in motion my automatic breathing. It's cool."
Love and support
Ms Clarkson said her husband Scott and son Jacob had been a huge support throughout her treatment.
She said talking about her health to Jacob when he was eight had been hard but important.
He is now 14.
"I've tried to use language that's not alarmist," she said.
May is Brain Tumor Awareness month.
