The Auckland group is not the only head and neck support group in New Zealand. The Canterbury Cancer Society runs a group in Christchurch and in Nelson, speech language therapist Emma Burns runs a group for anyone who has had cancer of the mouth or throat. Some people in the group have had their voice boxes removed (laryngectomy), others parts of their tongue, jaw, saliva glands.
Bernard, a laryngectomee, describes the group from his point of view and mentions the HME, a heat moisture exchanger. HMEs moisten and filter the air (as the nose used to do) for those who now breathe through a stoma in their neck. They improve pulmonary function, reduce secretions, reduce coughing and reduce fluid lost via the stoma. DHBs around the country have started to fund them.
I have just got back from a most informative meeting with with the Head and Neck Cancer Support Group Nelson. One which Emma Burns organises every two months.
We had three new people joined to day. There was a most interesting talk, and very good information about lymphoedema, how to handle it; what the lymph nodes are and their relevant functions in the body. Also the importance of skin care and exercising the head and neck after surgery. Exercising the tongue and massaging the inside of the mouth to help the swelling from the lymphoedema.
I found this information most helpful. It was delivered by guest speaker, Yvonne Ferguson, physiotherapist and lymphoedema specialist. A most knowledgeable expert in her field.
Other items on the agenda for the day:
- Alteration in taste perception in cancer
- Oral care and access to dentist
As we get to know each other in the group we are all opening up, and there is a very friendly atmosphere. We share experiences and it is a chance for learning and also an opportunity to talk and meet with other people. A lot of smiles.
As for the HME, the general consensus is that the quality of breathing /life is so much better. We have one member that has used a "bib" for the last eight years. He has changed to the Atos system and it has made a big difference to him. Also it does make it easier to voice with a better quality of voicing.
I am only just now getting the base plates to stay on more the 24 hours. I think three days is the expected time. The filters I think need to be changed every day so that your breathing is not too strained. We had a demonstration here in Nelson. I do hope we can have another one on the HME and base plates. The first time I did not know what questions to ask.
Base plates, by the way, are adhesive "plasters" coming in many shapes to fit most neck shapes. They have a ridged nylon ring in the centre to take a plug, an HME which allows you to breath moist warm air. When you take off the white protective cover the are nearly invisible on the skin. It just takes a little practice to get them on right. They make a big difference to the quality of your breathing.
A big thank you to Emma Burns. Her care and hard work in organising this group is invaluable.
Footnote from a Christchurch member We had a session at Christchurch Public Hospital yesterday on using Atos base plates and HME filters. I was the only one wearing one, but it seems I have been wearing the plates for too long and the same with the filters. Will have to alter the frequency of changing them. A very informative meeting indeed. Hope we have more meetings on other subjects concerning throat cancer.