Experiencing symptoms of fatigue, tiredness, and anxiety, I couldn’t ignore the significance of my condition, especially considering my family history.
Both my oldest sister and older brother had passed away from neuroendocrine tumours (NETs), and another brother was currently fighting the battle. With this knowledge, I immediately realised what these symptoms meant for me.
My family was enrolled in the Australian Genomics Health Alliances Rare Cancer Flagship, and we had a meeting with A/Prof Paul James of the Peter MacCallum Cancer Center. Seeking guidance and answers, I took his advice and underwent tests in December 2019 and again in 2020.
After numerous blood tests, ultrasounds, and PET CT scans, it was discovered that I had Pancreatic NETs since 2010.
Under the care of the Royal Hobart Hospital Endocrine Neoplasia Clinic, I decided to participate in a trial. Every 28 days, I receive a needle (lanreotide), and the nurse referred me to NeuroEndocrine Cancer Australia (NECA) to learn more about neuroendocrine cancer.
In late 2021 and into 2022, while reading through the NET National Action Plan, I discovered that not only does the government not fund specialist neuroendocrine NET Nurses, but the NECA NET Nurse was patient funded. At that point, NECA received no State or Federal Funding. I couldn’t believe it! Why should nearly 30,000 neuroendocrine cancer patients have inequitable funding compared to other cancers?
Motivated by this realisation, I contacted NECA and met with the wonderful ladies, Meredith and Adie, to discuss fundraising. My ideal goal was to raise enough funds to support our very own NET Nurse in Tasmania, just like other cancer patients have. In October 2022, we held the inaugural Flinders Island Cup Meeting – Racing for a Cure, which raised over $47,000 for NECA. In 2023 we raised $60,000 and over $50,000 in 2024.
Organising a fundraiser of this magnitude is a mammoth task, and it takes up a significant amount of time, especially considering my ongoing treatments and running my own business. Additionally, I have met with most Members of Parliament in Tasmania, lobbying for NET Nurse funding. We simply want to be treated no better or worse than other cancer patients.
With over 100+ newly diagnosed Tasmanian NET patients every year, our NET Nurse would have a busy schedule. Having one point of contact for referrals and running patient support groups across Tasmania would be life changing. It has been incredibly challenging to stay positive while sharing my story with friends and family, considering how this cancer has already claimed the lives of family members. I have nieces and nephews growing up without parents, but I choose to fight this cancer and advocate for funding so that my children and grandchildren will never feel as isolated as I do. Having a constant specialist community NET Nurse to turn to for guidance would significantly lessen the anxiety associated with changing GPs and nursing teams.
Meeting other NET patients at the 2022 fundraiser was truly wonderful, and we are eagerly looking forward to meeting even more at the NET Patient Forum, which has been scheduled alongside my Racing for a Cure fundraiser this year. We invite all patients and caregivers to join us because we are not alone. We hope that one day, equitable and optimal patient care will be a reality in every corner of Australia, and I will continue to do my part to make this dream come true.
Read more about Racing for a Cure 2022 HERE.
If you’d like to donate or read more about Racing for a Cure 2024 click HERE
