Accept the scarred and disabled

We’re getting closer to WHNCD which is held on July 27. No stalls this year but an online awareness campaign. Last week I tried to raise awareness of HPV-related HNC and the vaccine against it. This week I thought I would talk about the impact for those of us disfigured or disabled by the disease. That’s not a huge number of us although most people will have some sort of ongoing physical and mental side effects.

I belong to the disabled and disfigured but on a small scale and I’ve been able to make a reasonable life for myself. I am getting worse and worse at eating any type of solid food or food with “bits” in it as my teeth decline but it was never good. I was told in 2014 that I wouldn’t be able to eat because of lack of room in my mouth but I did manage by cautious half-pie chewing and mushing with top right molars and a small collection of loose bottom teeth that have now virtually gone!

On top of that and even worse is the severed marginal mandibular nerve that means that some food and liquid stuff that goes in my mouth tends to dribble out and, well, facecloths are my best friend.

I have a sucked in lower left lip because of the cut nerve and lack of left bottom teeth which can never be replaced because of radiation damage and the lack of a gum. There’s a flap where the gum would be. Of scars, I have a multitude including one deep annoying one down the middle of my chin.

No self pity here because I’m a survivor of 4 cancers, but this disability and disfigurement and especially the inability to eat have given me a real insight into disability in general. Of being different and excluded. People have been WONDERFUL about my difference – I am lucky – but I exclude myself from some things because they cause me stress and life’s too short. I feel huge empathy for others in our group who struggle to talk and eat and have scars and dental problems.

I want people in the wider world to understand that there is a thing called head and neck cancer, it sometimes plays havoc with teeth, eating, appearance, speech. It can seem a bit “confronting” but we are all part of the diverse human family. Please accept us.

I feel very grateful for the things I can do. I can enjoy coffee and some liquid foods when I’m out and about. I love walking so my fitness is really good for my age and I have tons of different passionate interests. Can’t say it is all without challenges and sadness though.