My chordoma was discovered by chance in 2017 while I was serving overseas with the Australian Defence Force. After injuring my back during operations, I was flown to Dubai for medical investigations. An MRI revealed something unexpected, and I was medically transported back to Australia for further tests. After surgery, I was diagnosed with clival chordoma.
Like many people, my world was turned upside down by the diagnosis and all the uncertainty that came with it. I was told I would need proton beam therapy, which at the time was only available overseas. I was fortunate to have the opportunity to travel to the Maryland Proton Treatment Center in the United States, where I received 38 rounds of proton beam therapy. I will always be grateful that I was able to access that treatment, although it also marked the end of my military career.
Travelling overseas for treatment was made easier because my travel costs were covered by the Australian Defence Force. However, returning home has brought new challenges. I continue to live with ongoing side effects and often feel as though there are few options or support available to help manage them.
Chordoma has had a significant emotional and financial impact on both me and my family. Being medically discharged from the Defence Force after treatment left me facing an uncertain future.
Research is important because there is still so much we do not know about the long-term effects of treatment or how best to manage them. A better understanding of these side effects could make a real difference to the quality of life of people living with chordoma.
It is a frightening journey, but I would encourage others not to be afraid to ask questions, seek support from people who have lived through it, and stay connected with their care team. I hope that one day research will provide the answers we all need.