Prevention is best

Head and neck cancer can be so horrible that it became my life’s work in 2014 to support fellow sufferers and their families and advocate for early detection and HPV vaccination. 

I’ve never wavered from this purpose because HNC keeps attacking me. You can’t put it behind you if you get recurrences or if your quality of life is impacted every single day. 

My story started mildly in 2007 when a lichen planus lesion turned malignant and I had a small tongue surgery. 2009 it was back and I had a hemiglossectomy with a forearm flap. I recovered about 80% of my speech and eating function. 2014 and it was back again at the worst possible time when I was supporting my husband through his long decline into dementia. This time I lost my front teeth, a lot of bottom teeth and lost lip function on the left because of a severed nerve. I never was one to wear lipstick but now I had hardly any visible lip left!

Between 2014 and 2021 I had a top dental plate that allowed me to look halfway decent. However, I kept biting on the surgical site on my lower left gum causing a grim build-up of scar tissue which was biopsied many times. The solution was to make me a bottom plate anchored by implants which would also push my paralyed lip out and stop me biting it.

I’d had radiotherapy in 2014 to stop the cancer coming back and this worked until 2021 when the cancer reappeared at the side of my throat. This time I had another major surgery and my second almost intolerable tracheostomy. The defect in my throat was filled by a huge flap of tissue taken from my thigh. The two previous ops had harvested the more useful tissue from my left and right forearm. Almost Frankensteinian.

BUT the surgeons went ahead with the implant placement to aid the problems with my bottom gums and lip. They thought the new cancer was curable.

Unfortunately my beautiful top plate no longer fits. The implants at this point have been osseointegrating for six months. I’ve had the abutments put on my implants but there is a hold up in getting an impression and plate made because I have slowed the healing by biting (can’t feel it) on the gum and it looks like I am going to go for a very long time with no more than 4 teeth and a vampirish appearance. Masks are good but hard to wear 100% of the time when eating, drinking and talking.

To sum up, head and neck cancer has disabled and disfigured me and caused me to go through some thoroughly ghastly procedures. And there are people worse off than me! Many die, many are tube fed and don’t even have the joy of a cup of coffee or a cold glass of water.

All serious head and neck cancer patients have their lives changed in some way and it is not a sexy cancer. We are the only head and neck cancer charity in Aotearoa/New Zealand and I hope my tale of woe will encourage people to donate to us to provide peer support and practical help to those who join me on this rocky pathway. 

Yep, I have survived with very good care in 2021 and with the support of my peers and my family but oh, it is so hard to be unable to eat solid food, to have few teeth, to dribble and to struggle a bit with my speech. You don’t want to get head and neck cancer. There are preventions which we will mention in a later story but meanwhile we want your help to comfort those who like me are affected badly by this little known cancer. 

Go to hnca.org.nz to learn more about our charity (Head and Neck Cancer Support Aotearoa) and maybe donate a flat white’s worth to our cause.