I was first diagnosed with head and neck cancer in 2007. I had had a painful ulcer on my tongue for years, but an oral surgeon diagnosed it as lichen planus, and I did not have a biopsy until the pain became unbearable.
My first surgery was small though and it was not until 2009 that I had a hemiglossectomy and neck dissection in Auckland. Following that, I was well for four years after which a new tumour turned up on the inside of my cheek (buccal mucosa). This time it was recommended that I have radiotherapy after surgery to “stop the cancer coming back on that side”.
I think the late diagnosis initially messed up my tongue and mouth so much that I was more likely to get new primaries. Just a hunch! Fortunately, I am a fit and active person in my early 70s now and have coped well with my scars and eating disability. I love to walk and since my last treatment in 2014 I have joined several walking groups and explored the coastal region I moved to not long before the last treatment. I highly recommend any sort of exercise you can do to keep the body moving.
During the recovery period from big surgery and radiotherapy I was at a loose end, lonely and depressed (my husband died during this period) and joined an Auckland head and neck cancer support group run by the hospital. This was the start of a new life for me, one where I could use the skills which I had picked up during 40 years of teaching to sum up meetings and write simple articles about the disease.
More than that though, I found that I had developed a keen empathy for HNC cancer patients and that my greatest satisfaction came from supporting my peers online in the Facebook group I and others started in 2016. One thing has led to the other and I have been asked to represent patients in all sorts of district health board groups.
It has been my pleasure to have been able to support others since my last head and neck cancer treatments and to be part of a global community of head and neck cancer advocates.