The head and neck cancer patients and carers I met at the Auckland Support Group in 2014 were pretty tough and staunch. I'd attended other support groups where there were tears and tender feelings but the head and neckers were quiet about their feelings and just wanted to learn more about the disease and enjoy the feeling of being silently supported. I don't know why our group is still quite matter of fact in its approach to cancer; maybe it is because we tend to be in an older age group where we're more philosophical about our mortality and there is a good mix of men and women. It might be because head and neckers have to be tough. The disease takes so much from you that for many of us just coping from day to day is challenge enough.
Recently the Swallows Charity in the UK made an arresting chart showing 23 issues and fears head and neckers cope with. We surveyed our group and came up with a similar list but with more emphasis on dental problems, Here is the Swallows list
And here is the one that Olwen Williams did for us.
These are arresting charts but how will they help us? We don't want pity. What do we want? An acknowledgement of how hard it can be for some of us to get through each day? The Swallows chart was made to analyse the issues and see what could be done to help people with them. We can do that too. We are always advocating for better post treatment dental care and we discuss how to deal with dry mouth endlessly. But what about the other distressing issues like loss of social eating, self consciousnesses about disfigurement, loneliness and worse of all the loss of voice.
The funny thing about loneliness is that you can feel it even when you are surrounded by family and friends. No matter how much support people give you, they can't go through the treatment for you. Rarely do we know another person well who has been through the same thing.
This is where support groups come in - either in person or online. We can provide understanding and support, raise awareness and advocate for better treatment.
Groups like us can "raise the volume of the unheard voice". We note the work of Emma Burns and her laryngectomy support group in Nelson.
As far as advocacy for better treatment is concerned, it's also good to see the push for HME filters for laryngectomees by SLT Carlene Perris, Cara McCarthy from Atos and our own Tammy who has presented very strong arguments. This is an example of people looking at the issues and coming up with some mitigation of the problems listed above.
On the eve (almost) of World Head and Neck Cancer Day, I just want to point out the long term issues many head and neck people face. It's why we're here.
What do you think?