My story is that for around a year before my diagnosis in May 2017, my upper mouth was painful, reddened and despite visits to dentists and specialist dentist (and a biopsy in 2015) the answer was “candida, and you need to clean better behind that bridge”….
I pushed for an answer from my dentist, who had been seeing me for around 18 months, about finding out what’s happening UNDER that bridge, as my gums were swelling over it. He agreed, finally, and in early April 2017 he removed the bridge and its 5 teeth.
The gums were awfully smelly and gross but he thought OK and let healing happen.
Five weeks later, things were MUCH worse, and this is the key takeaway from me:
I needed to be my advocate first and foremost.
Yet I was incredibly worried of course about what the next biopsy would bring. And it did, May 17, 2017. “Squamous Cell Carcinoma”….
I WAS both glad and shocked. To have an answer, and then the very next day to meet two of the top HNC specialists at Chris O’Brien Lifehouse in Sydney…along with my husband. It was a long consultation and I admit I was so scared by the prospect of half of my mouth being removed, I had to ask for a little break to walk along a hallway with my dear husband and then to return to be checked that I was OK to sign the forms for what was next. More consultations with the then unknown prosthodontist, and back for surgery 7 weeks later.
What I was glad about is this:
I took back a lot of control of my health as I followed their instructions to me and I asked a lot of questions.
I did this via email in the period before the BIG surgery and the A/Prof, wrote back to me with calm reassurance and honesty.
It helped so much.
I also began to look at my surgical team as ‘the experts’ which of course they were, and that they knew their work, and with my complete trust in them, I did my bit which was compliance, and healing.
I asked lots of questions during my recovery in hospital for that first surgery, and whilst it was not always my Professor I saw, there were team members who could help.
I made sure I complied (despite disliking it) with the NG tube and feeds for 8 days as that would help me heal and go home.
I had no benchmark for healing. I just did as I hoped would help. It was hard being back home 2 hours away if I had any questions but the team nurse and others were contactable.
Over time, whilst I returned to some normalcy with eating…only had 8 teeth on the bottom, I could ascertain progress via the many selfies I took each day, and by the supportive and encouraging ‘cheerleaders’ in my on-line and friendly community.
I was not afraid to share myself appearance-wise because I was needing to get myself out and about to help with confidence and connection. I loved finding my ‘social self’ again with this cancer thing of mine. I shared my personal knowledge and others in the community found it of interest.
Why my cancer was so ‘rare of rare’ is something I did not fully comprehend when my surgeon told me. I had no risk factors and I was not male. It was a good reason that I had no success checking on Google etc too so I left that as any kind of occupation.
I am a teacher at heart. And it was my career for almost 40 years, so in the context of this cancer of mine, I wanted to share, help and inform. Becoming an Ambassador in the early years of the Australian HNC charity started by two of my surgeons, now called Head and Neck Cancer Australia, helped me and from what I understand others, as they face a diagnosis, treatments and recovery.
It is not a cancer that once it’s taken from you, life begins again. I have changed eating habits and food selections because I have a mouth full of ‘hardware’ that is an upper prosthesis which is attached to the jaw made from bone from my leg. At times, I get a bit sad about what I can no longer enjoy food wise, but then I can bounce back given that I can eat and drink with relative ease and I have a smile worth sharing.
by Denyse Whelan, Sydney