Last week one of the most wonderful people in my head and neck cancer Facebook group had a coughing fit in an airport cafe. He has had a laryngectomy. Sometimes the valve in his stoma leaks and that causes coughing.
A young man abused him about his coughing. “You will infect us all.” Such is the unease people around the world feel about Covid.
To me this epitomized the stigma that some head and neck cancer survivors experience. They might be scarred, disfigured or breathe through a hole in their neck. They more than anyone need to be among people because the consequences of treatment can lead to social isolation.
The head and neck cancer patient in question was also on the way to a city hospital for treatment so was particularly vulnerable. Covid stress, even here in New Zealand where there is no community transmission, was not something he needed!
My six years of experience in a head and neck cancer support group have taught me a lot about the needs of laryngectomy patients. Imagine losing your voice box and having to learn to talk through a speech valve in your neck. My own slight disfigurement and disability has given me insight into being different, being disabled.
This is a plea for understanding. Humans are very adaptable and can learn new ways of functioning. But being abused by insensitive outsiders is a blow to that hard won peace of mind.
Robyn
July 20, 2020 — 5:56 am
Thank you for raising awareness and understanding.
My mum experienced sinus cancer and following extensive surgery had noticeable facial disfigurement – it still brings tears to my eyes to think how others would openly look at mum – even adults.
Deborah Smith
July 20, 2020 — 4:28 pm
I still cough and choke on food. People do look at you and make faces etc. I have a feeding tube so eat very little if at all. Choking even on liquids which then I aspirate into my lungs. Which causes me to cough more. I truly understand as I was a RN.
Deborah Smith
July 20, 2020 — 4:29 pm
I was diagnosed in 2001
Chris Ellis
July 21, 2020 — 2:21 am
Yep, our Chief Medical Officer here in Queensland has been on the television telling everyone that if you suffer from any of the following, you need to go to the Covid Centre straight away. The symptoms include coughing, shortness of breath, fatigue, loss of taste or smell. All of these are symptoms of Covid.
I now have another hurdle to overcome, I have a cough, have shortness of breath (both lungs have been partially collapsed and are scared badly plus I have a heart condition), fatigue, no smell or taste ever since I became a laryngectomee in September 2015. These are some of the side effects I live with every day. Now I get either turned away or separated from everyone else just in case I infect anyone else with my cancer that they don’t even know about. I have an appointment tomorrow with the perioperative clinic for the assessment prior surgery on my throat again. Talk about not not just frustration but absolute anger for being treated like this. I am a neck breather, have the softest of voice & the only text to speak app I could get on my phone uses a female voice. I have no inclination to undergo gender reassignment just so the voice fits the body. Sorry, rant over.
admin
July 21, 2020 — 3:08 am
It’s blimmin’ hard Chris. I wish there was a better text to speech app. I’ll ask around. Sending you good wishes.
admin
July 21, 2020 — 3:09 am
It’s hard isn’t it. More kindness needed all round.
admin
July 21, 2020 — 3:11 am
Any facial difference is difficult. I try to make people aware about what causes it.
admin
July 21, 2020 — 11:22 pm
Sorry to hear this. It’s really good to rant. wishing you well.