My chordoma journey has lasted 20 months and has ended with me requiring 24-hour aged care. I have not faced major challenges in accessing treatment, and the transport response for care has been reasonable. But the impact of the disease has been devastating.
Chordoma has left me paraplegic. I can no longer work, and my life has changed completely. I want decision-makers to understand that research is important because future patients need more certainty. They need clearer options, better pathways, and more hope than many of us have had.