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Our picture is of Priscilla Queen of the Desert who encourages us to accept the horrible radiation mask. This was made by Mary Pringle for World Head and Neck Cancer Day next month.
The meeting
Someone suggested that the headline should be, “Red wine sales plummet as cancer patients turn away.”
That is how much the discussion focussed on taste and red wine at our support meeting yesterday. Food and taste are huge in our world. Apparently red wine just does not taste the same anymore.
But the main focus of our meeting was on our new members who are still struggling with the immediate aftermath of treatment with the associated swelling and lymphoedema.
We were lucky to be visited by Shannon Ruddell who is ADHB’s only physio specialising in lymphoedema. She gets some help from a breast cancer lymphoedema specialist. There are three people treating lymphedema at Counties and at least one at Waitemata and Whangarei.
They are busy, with a waiting list of about two months, although they prioritise patients who are urgently in need of treatment. Shannon and a colleague are setting up a private clinic in Mt Eden for people who do not want to wait that long.
There is other private treatment, for example by Pinc and Steel in the Albany Active Plus gym and elsewhere in the country. There is no government funding for this, so they have to raise their own money. However, you can apply to their charity for funded treatment. Alternatively, if you can pay $150, you can get ten cancer rehab exercise classes with them where you can mix with other cancer patients. (Further down the track after treatment.) Their services are supplied in the first two years after cancer treatment. https://www.pincandsteel.com/
Be careful going back to the regular gym though. Get an assessment first.
Shannon took us through some head, neck, and shoulder exercises, most of which are in this booklet on our website. https://hncsa.org.nz/lymphoedema/
One helpful hint: if you sleep in the foetal position with your chin ticked in, your swelling will be worse in the morning. A pillow under the mattress will help.
We all know that excess alcohol is bad for head and neck cancer patients. (Some say no alcohol for us and I don’t ‘drink” myself. Totally understand people indulging in the pleasures of life though!)
If you really want to go dry, funds from Dry July this year are going to a fabulous cause, the Auckland Lymphoedema and Rehabilitation clinic started by Shannon and a colleague. You can read about it here. https://www.facebook.com/aucklandlymph/
You can donate here. https://www.dryjuly.co.nz/teams/auckland-lymphoedema-and-rehabilitation
But from our red wine missing, white wine drinking Auckland support group members (some), we will see:)