I had never heard of neuroendocrine cancer until I was diagnosed. Neither, it seemed, had the gastroenterology consultant who delivered my diagnosis. Mine is an experience familiar to many of us: asymptomatic, a strange ‘birthmark’ on my liver, detected whilst being scanned for something unrelated. Followed by an 18-month ordeal to diagnosis.
The lack of any meaningful knowledge about neuroendocrine cancer shocked me, and I spent the next five weeks in an information vacuum. I was scared and desperate for answers.
Answers and support came in the form of Neuroendocrine Cancer UK and for the first time, I had trusted advice and an idea of what to expect.
Now, after two major surgeries, taking early retirement this summer from teaching, and currently undergoing PRRT at Queen Elizabeth Hospital in Birmingham, I have the privilege of becoming an ambassador for the charity, and the opportunity to give whatever I can to our community.
One of my goals is to prevent future patients (especially the asymptomatic or those with ‘mystery’ symptoms) from suffering in the information vacuum.
Anything NCUK can do, with a little help from me and the other ambassadors, to raise awareness within the NHS will go some way to achieving my goal and I look forward to working with them all.