For more than six months, I lived with worsening pain in my lower back. I was making weekly trips to the physiotherapist, but nothing seemed to be helping. The pain continued to increase, spreading into my glutes and upper leg, and I also began experiencing problems with toileting. Eventually, my physiotherapist suggested I have scans because it was clear something more serious was going on.
The CT scan was extremely uncomfortable, and it took multiple attempts to complete an MRI because I could not lie on my back without severe pain. After a biopsy of a lesion on my lower spine, I was referred to a neurosurgeon, who admitted me to hospital straight away. That was when I received my chordoma diagnosis.
After scans showed suspicious findings in my lungs, I was advised that I would not be eligible for the Medical Treatment Overseas Program for proton beam therapy, so my treatment would need to take place in Adelaide.
One of the biggest challenges has been the uncertainty surrounding my care. I have often felt like I was left in limbo. My radiation oncologist resigned just before my treatment scans, leaving me with many unanswered questions, and there were times when important follow-up scans were not completed when they should have been.
Fortunately, I have not needed to travel for treatment, but chordoma has had a profound impact on my family. The hardest conversation I have ever had was telling my children that I had chordoma. More recently, I had to tell them that surgery was probably no longer an option and that we simply do not know what the future holds.
Financially, I have been fortunate to have income protection insurance, but it has not replaced the life we had before chordoma.
Research is essential so that people diagnosed with chordoma have a better understanding of the disease and the treatment options available to them. Greater knowledge means patients can make informed decisions about their care and have more certainty about what lies ahead.