In June 2021, at the age of 25, I underwent an 11 hour surgery to remove a large tumour from my skull base. The tumour began in the bones of my skull growing down to the top of my spine, which meant part of my spine was removed during the surgery — hence the collar in my photo. I spent four weeks in hospital at Cambridge Addenbrookes due to complications.
The standard of care I have received within the NHS has been excellent. I have been fortunate enough to be treated by specialists across the country and have been accepted to begin proton beam therapy in Manchester, as we only have one centre at present in the UK.
On a more positive note, I have met wonderful people across the world — including other young women — who are also going through the same experience. This network has been invaluable to me.
I feel strange about sharing my story so publicly, but I know there is probably a limit to what I can do for the Chordoma Foundation without talking about my experience.
The Foundation is actively driving groundbreaking research and supporting the inclusion of chordoma patients in clinical trials. This research could be beneficial for many other cancers. The Foundation also supports patients in countries where they may need guidance seeking appropriate and specialist care.
In the future I look forward to supporting them more actively in funding their research, and that’s why I began a virtual fundraiser.
Finally, I want to thank the many people around me who have done everything to make this experience less daunting and even enjoyable at times: my family, friends, colleagues, nurses, and incredible surgeons.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.