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New head and neck cancer initiative

New head and neck cancer initiative

Head and neck cancer is the “most unkindest cut of all” according to patients who have been through this disabling and disfiguring disease. And yet unlike breast and prostate cancer there has been no nationwide support for this cancer - until now.

Surgery for head and neck cancer, and the radiation that often replaces or follows it, affects appearance, speech, eating and even kissing. People who’ve had this cancer might not be able to suck from a straw, smile or eat any solid food.

Social isolation often follows which is why a group of Auckland Head and Neckers started a nationwide support network in 2015 which became an incorporated society in 2016 and now has committee members from all over the country.

Some cancer groups like the Breast Cancer Foundation are primarily advocacy groups but the Head and Neck Cancer Survivors’ Support Network combines advocacy with personal connection and support. They run an Auckland Support Group meeting every month but their main focus is online with a website, a closed Facebook group and a Twitter account.

Diana Ayling and Maureen Jansen picked up the baton from the ENT department who ran an Auckland support group at Domain Lodge. They took over the group and expanded it to an online network which now consists of about 80 patients, survivors, carers and health professionals.

As well as the increasing number of New Zealanders, there are 20 - 30 overseas members, mainly from Australia and the USA.

Diana and Maureen were soon joined by Tammy von Keisenberg from Whangarei whose husband had two rounds with head and neck cancer. Since this year’s AGM they have been joined by Narelle Hoarton in Edgecumbe, Liz Gray from Invercargill and Olwen Williams from Blenheim.

They have several health professionals on board as advisory members. Diana, the chairperson, has been invited onto review teams and consumer groups where she is able to fulfil the advocacy part of their mission.

The web address is www.headandneck.org.nz and the email address is headandnecknetwork@gmail.com. Twitter handle is @HeadNeckNZ. For the closed Facebook group, search for Head & Neck Cancer support.

Ends.

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