My journey began with what was initially diagnosed as sacral haemangiomas by a multidisciplinary team at a major cancer hospital in Sydney. Even getting a biopsy proved difficult, as it took time to find someone who could perform the procedure. From there, I found myself on what felt like a medical merry-go-round, receiving incorrect information and struggling to get the right diagnosis and care.
Accessing treatment has been challenging in many ways. I have needed to travel for tests and treatment, and the long car journeys often make my pain worse. The travel has also been expensive, with accommodation costs adding up every time I needed to be away from home.
Chordoma has affected every part of my life, both emotionally and financially. The medical trauma has had a profound impact on my self-esteem, and I have sold everything I owned to pay for treatment and surgery. I have been applying for jobs for the past nine months, but I have found it very difficult to perform well in interviews because of everything I have been through.
Research is so important because I hope it will mean that extreme treatments become a last resort rather than the only option. Patients need greater access to treatments such as proton beam therapy and medications that may be effective without causing lifelong side effects.
I am not sure how I have survived the past three years, but I am incredibly grateful that I have. Every day I get to spend with my friends and family is something I truly cherish.