My journey began with constant headaches in June 2024. By August, they had become progressively worse, and I had also developed fuzzy vision. Panadol was no longer helping. I went to the Emergency Department, where I was diagnosed with a migraine and eventually sent home. Over the following weeks, I saw my GP several times, but no one could work out what was wrong.
When I returned to the Emergency Department in late October 2024, I was fortunate to be seen by a trainee doctor who took the time to ask constant questions while researching possible causes. After I vomited twice during the consultation, he ordered a CT scan, which revealed a growth behind my eyes. An MRI followed, and the results showed that I would need to travel interstate for a biopsy and surgery to remove the tumour. It was only after my first operation, when the biopsy results came back, that we heard the word "chordoma" for the first time.
My family tree is full of relatives who have had or died from different types of cancer, but not once had any of us heard of chordoma.
Living in Alice Springs created additional challenges. None of the doctors at the local hospital felt confident performing surgery on the tumour, and they were unable to tell me much about it because they had never treated it before. I was referred to the neurosurgical team at the Royal Adelaide Hospital.
Following my first surgery, I returned to Adelaide for a second operation to remove as much of the tumour as possible. Afterwards, I was told I would need radiation therapy to the tumour site. However, nothing happened until April 2025, when I had another MRI and consultation with the Royal Adelaide Hospital oncology team. After that, there were no further discussions about treatment until early June, when I was finally told I would require proton beam therapy. Before travelling for treatment, I had to return to Adelaide yet again for another MRI.
In just eight months, I travelled from Alice Springs to Adelaide four times, yet throughout that time I had very few detailed discussions with medical professionals about what was happening or what the next steps would be.
Even today, I do not see any specialists locally for my ongoing care. I have intermittent telehealth appointments with the Royal Adelaide Hospital, but I still have very little idea what the future will hold in terms of my ongoing care or treatment.
Travelling for treatment has been one of the most difficult parts of this journey. I travelled to Adelaide for my first surgery in November 2024 and remained there until the weekend before Christmas, when I was finally allowed to return home to spend Christmas with my family. Three weeks later, I was back in Adelaide for my second surgery. That meant another three weeks away from home. Both trips were filled with anxiety and very little information.
In April 2025, I travelled back to Adelaide for another MRI and oncology appointment, cutting short a visit with my parents. Then, in August 2025, I returned once more for another MRI before travelling to Florida for proton beam therapy. Spending ten weeks away from my husband and family was incredibly stressful, especially because we still did not have many answers from our doctors.
The emotional impact on my family has been enormous. Just days before travelling to Adelaide for my first operation, I found out I was going to become a grandmother for the first time. Instead of simply celebrating that wonderful news, I was also facing the possibility of having a cancerous tumour and wondering whether I would be there to meet my granddaughter. The uncertainty caused tremendous anxiety for all of us, especially my husband.
The financial impact has also been significant. The Patient Assistance Travel Scheme (PATS) covered the travel and accommodation costs for my operations, but every subsequent trip to Adelaide for follow-up MRI appointments, including accommodation, has been at our own expense. Travelling overseas for ten weeks for proton beam therapy was also very stressful because the last thing I wanted was to leave Australia and my family. I would have much preferred to receive proton beam therapy in Adelaide.
I was deeply disappointed to learn that the Bragg Centre would not be completed. Although it is too late for my own journey, having proton beam therapy available in Australia would have made an enormous difference to my emotional wellbeing, as well as to the stress experienced by my husband and son.
My husband is a sole trader, so during the nine weeks we were away for my surgeries there was no income coming into our household.
I believe that greater funding for chordoma research, together with better sharing of knowledge throughout the medical community, would make an enormous difference for current and future patients and their families. Most of what I have learned has come from the internet. Very little information has come from the medical professionals involved in my care.
Eighteen months after being diagnosed, I still have not spoken with anyone I would consider to be a chordoma expert or had the opportunity to speak with someone who has the knowledge and time to explain what I can expect in the future and answer my questions.
I also believe that if proton beam therapy were available in Australia instead of overseas, it would make life much easier for patients and their families. The Bragg Centre needs to come online. Although it is too late for my own journey, it would make an enormous difference for future Australians diagnosed with chordoma.
More medical care and better information are needed for everyone living with this unique and rare cancer. The unknown does not help patients or their families understand what to expect now or in the future.