In 2017, Jodie Clarkson was diagnosed with brain cancer and told she had two to five years to live. Six years on, her palliative care team helps her live well as she raises money and awareness for brain cancer research.

When Jodie Clarkson was diagnosed with brain cancer in 2017 she was determined to turn that into as much life as she could.

“When my GP gave me the ‘bad news’ it was like a hole appeared in front of me. Determined not to ‘fall down’ it and super powered by mother love for my son Jacob, I kicked into project management mode," Jodie says.

Jodie wrote an NT Advanced Personal Plan the night she was diagnosed and a Will while she waited in Adelaide for neurosurgery.

Eight months after surgery Jodie’s brain cancer recurred and the surgeon told her it was “infiltrating critical areas, ‘inoperable’ and likely only six months to live.” Jodie sought a second opinion from Dr Charlie Teo, whose 2018 surgery she credits for giving her these last five years.

“By the end of 2020 Charlie said - I’m so sorry Jodie, it’s growing again. I can’t see a surgical target, so now is the time to consider temozolomide chemotherapy," Jodie remembers.

How palliative care helps Jodie achieve great things

At first, Jodie was surprised when she was referred to palliative care.

“I came under the care of Apmere amantye-akeme – The Comfort House in Mparntwe (Alice Springs),” Jodie says.

“After being with my cousin and father when they died, I thought palliative care was when the doctor started morphine to make the patient comfortable for their last few hours of life” Jodie explains.

Instead, palliative care is an ongoing positive experience for Jodie, which surprised her.

“Palliative care has actually been all about planning for the end while living as well as possible in the moment.”

For Jodie, palliative care involves regular check-ins about what she needs. She explains, “I have a cuppa and a chat with my pal care consultant monthly. It’s an informal chat with a focus on quality of life and I feel very comfortable with Chris.

“She provides clinical knowledge, suggestions or referrals that may support the physical, social and emotional challenges of my progressing disease. For example, I have impaired peripheral vision and was hitting my head and thigh on things around home. Chris referred me to an OT (occupational therapist), who assessed my home and we put high-vis tape on those cupboards – I haven’t hit my head or thigh since.”

This patient-centred plan also enables Jodie to focus on helping others by increasing awareness and funds for brain cancer research.

So what next for Jodie?

For starters, she’s co-authoring a paper titled ‘Autonomy as personal power in acute and palliative care’ to help build understanding from a patient’s perspective.

Jodie also completed a 25-kilometre run along the Larapinta Trail and now runs 20 kilometres each week as a fundraising challenge. She describes her running as something that gives her hope. “I run to breathe every day,” she says, “and I’m at my best when I’m advocating for and supporting others.”

Through all of that, Jodie says it’s vital self-care that her palliative care team helps her keep front and centre. “I’ve learnt to ask for help and diarise self care,” she says. “For me that’s a daily run alone or with one of five running buddies, morning transcendental meditation with my husband Scott, before and after school meals and time with my son, a daily ‘nana nap’, weekly yoga, and cuppas, walks and laughs with friends.”

And Jodie’s advice for others faced with a similar diagnosis? “Focus on what you CAN do, and try not to waste precious energy thinking or worrying about what you CAN'T do.”

Jodie is a member of PCA's National Register of Palliative Care Consumers and Carers and is happy to share her lived experience to raise awareness of palliative care and shape improved service delivery. To engage Jodie in your work, start HERE.