Thursday, August 24, 2023
Mackay and Whitsunday Life
Oncology nurse and clinical trials coordinator Carli Shaw has cared for hundreds of people in our community during their cancer journeys.
She understands the physical toll the disease takes on not only patients but their families.
What she didn’t understand and wanted to know more about was the impact of what is commonly called ‘brain fog’ or ‘chemo brain’ so she has spent the past four years researching this hidden affliction.
“I’d see all the patients with ‘chemo fog’ and be hearing things like ‘I tell my kids the same things 15 times and now they don’t listen to me’,” Carli said.
“I posed the research question ‘How does cancer-related cognitive impairment after chemotherapy impact daily life?’”
Carli was recently recognised for her efforts, with her paper taking out a top award at the 25th Cancer Nurses Society of Australia (CNSA) Annual Congress in Adelaide in June.
Her research involved interviews with participants from across Australia.
“Cancer patients are trying to figure out who they are, after this shock,” Carli said.
“As a normal individual before cancer, you know who you are.
“Then cancer comes in and you’ve instantly got this brand-new identity that knows nothing.”
While forgetfulness was one of the effects of brain fog, it was just one part of the story.
“Participants have said that they're now the child and their kids are the parents,” Carli said.
“They’re spoken down to because they’re forgetting or getting mixed up with appointments and things.
“Nearly everybody described needing to change their profession or change roles within their profession because they think they couldn’t cope with the cognitive load going back to work.
“And because it's an invisible symptom, they felt the need to justify it or wondering whether they're making it up.
“And it's not something we can do a test on and say yes, this is what it is.”
Though there’s no consensus on what causes ‘brain fog’ Carli said that seeking to recognise and understand the issue was beneficial.
“I thought it was going to be really easy to answer,” Carli said.
“Although this is known, it’s a new area of study and I think it’s the formalisation of what is happening for patients.
“Every participant thanked me for being able to share their story. Quite a few said it had been really cathartic.
“I found it really challenging to hear some of these stories.”
The next step for Carli is to complete her doctorate on the subject and produce a 100,000-word thesis.
“Essentially it will be a case of now here’s the problem, how do we fix it?” Carli said.
Carli was also nominated for a People’s Choice award at the recent Mackay HHS staff recognition event.
Contributed by Mackay Hospital and Health Service.
Carli Shaw has been recognised for standout chemotherapy research
Carli has completed hundreds of interviews with cancer patients, to tackle ‘chemo brain’. Photos supplied