My journey started in 2010, when I was experiencing massive pain on the right-hand side of my neck, along with unbearable headaches that made me vomit. After seeing my physio, chiropractor, and doctor, I finally had scans and found out that I had a tumour.
I had to travel 340 kilometres from my home town to Adelaide for further tests and a biopsy. The diagnosis was clival chordoma. Travelling back and forth from my home town of Renmark to Adelaide was a challenge, as was being away from my family. Another huge challenge was dealing with doctors who had never heard of chordoma, which meant we had to do a lot of the research ourselves.
I have also travelled to Boston for proton therapy and to Germany for specialist surgery. Travelling overseas for treatment was challenging, particularly in Germany, where many of the medical staff did not speak English.
We were lucky enough to receive government funding for our trip to Boston in the United States, but we had to fund the trip to Germany ourselves. Because I was unable to work, we were living on one income, which was very hard. The Riverland community in South Australia fundraised so that my two girls could travel with us and to help with day-to-day expenses. For that, I am eternally grateful.
After having proton therapy in 2011, I had 10 years of all-clear, stable scans, only to have the cancer return in 2021 in my lungs and under my skin on my head, legs, torso, and back, eight in total. I also have one in my leg and one in my back that are situated in the muscle. After many scans, X-rays, radiation, and immunotherapies over the years, I am still fighting this beast. There’s always hope.
It is important that all cancers are recognised and funded. Australia desperately needs a proton machine, especially in Adelaide, where the Bragg Centre is already built.
It has been a hard road, and I am so thankful for any support that helps keep me alive.