My symptoms seemed to appear suddenly. One morning I woke with double vision: when both eyes were open, I saw two of everything; with one eye closed, I could see one image. At first, I thought I might be tired or have a migraine. I still went to the gym and then worked as a relief teacher at my son's school, not fully realising how serious the double vision was. By the end of the day, I booked an eye appointment. My eyesight was assessed as fine, and I was told to check my blood sugar and thyroid levels. Because I could not get a GP appointment quickly, I paid privately for blood tests. After reviewing them, the GP practice advised me to go to hospital, concerned I could be having a brain aneurysm.
At hospital, a CT scan did not show an aneurysm, but I was kept in so I could see a neurologist and have an MRI. By then, my vision had started to improve, but I had lost depth perception and was anxious to go home. The MRI changed everything. Five doctors came into my room and gently told me they had found a growth on my skull. They could not yet say whether it was a benign growth or a chordoma. I was referred to Auckland Hospital, where the neurosurgeons are based.
Waiting through the public system would have been very difficult. My follow-up appointment from the initial hospital stay was booked for 29 April 2026 - more than seven months later. Because I had health insurance, I was able to see a neurosurgeon privately. He explained that the MRI did not provide enough information and that a biopsy was needed. On 15 October, I had a trans-nasal biopsy, where surgeons went through my nose and drilled through the skull to take a sample of the growth. The biopsy was reviewed by several specialists and was confirmed as chordoma.
At first, I was told I would need proton therapy. I understood that this was not available in New Zealand or Australia, and the thought of leaving my children for treatment overseas was terrifying. Later imaging showed that most of the 5 cm growth had been removed during the biopsy, leaving only a very small area. After discussions between specialists, I proceeded with 33 sessions of standard radiation therapy. I am now about four weeks post-radiation and have experienced headaches, visual symptoms, ringing ears, tiredness, swelling, steroids, and brain fog. I hope I am now on the other side of treatment, and I am waiting for my next MRI.
Emotionally, chordoma has affected the whole family. We have good insurance, which I am very grateful for, but my husband and my mother have found this extremely hard. We have not told our children, who are nine and five, the full story. They know I had double vision and an "eye test," but not the seriousness of what has happened. Research matters because it is how we find new information, new strategies, and better choices. When your back is against the wall, you find the strength to put one foot in front of the other and you will do whatever it takes to live. Patients should not have to face that without clear information, accessible treatment options, and research behind them. The Chordoma Foundation, its website and Facebook page, and the Chordoma Foundation Ambassador, Misty have been an incredible source of support.
Chordoma patient, New Zealand
The photo of a Kererū, or New Zealand wood pigeon, was chosen because these beautiful birds became a small source of light during a very difficult time. They appeared often during this period, especially in quiet moments when things felt gloomy. Over time, the Kererū came to feel like a comforting presence, and something like a spirit animal.