September has seen a Domain Lodge meeting on nutrition for head and neck cancer patients and our Facebook group clocking over 700 members. Unfortunately this went down to 680 when I made a long overdue foray through the list to remove overseas members who had not been active for many years.
We started in June 2016 so we are over 8 years old in terms of our strongest entity: the online group composed of lots of Kiwis, a small strong band of Australians and some regular members from the UK, US and elsewhere. When we started, we had a lot of American members who gave us another perspective on treatment but as the years have gone by and head and neck cancer groups on Facebook have increased in the US, many of our American friends have moved on.
We are more than a Facebook group, however, and have tried to cater for people in real life by holding meetings at Domain Lodge. Since Covid we have struggled to get the numbers we used to have and will rethink our bi-monthly meetings in 2024.
Our charitable giving has been strong this winter with waterflossers, high fluoride toothpastes and patient packs sent to Dunedin and Hamilton as well as Auckland.
Diet, tube feeding, swallowing problems are all part of the HNCSA discussion and we were lucky to have a knowledgeable dietitian speak to us last Wednesday. Maria answered the questions posed by Facebook members and talked about the various research projects the team at Massey University might be undertaking. Here are three of the things we learnt from her talk:
- Centrum Plus is a good multi-vitamin to take if you think you might be short of minerals and vitamins because of limited eating options. From its advertising: “This medication is a multivitamin and iron product used to treat or prevent vitamin deficiency due to poor diet, certain illnesses, or during pregnancy.”
- Fortisip and Ensure are high in sugar to make them palatable. The hanging bags of Fortisip used in hospitals are not sweetened.
- Maria could find no co-relation between the limited eating options some of us have and diabetes. (My taste is so poor I tend to favour sweet things.)
One day soon we want to compile a recipe book for all levels of swallowing – easy things for cooks and non-cooks like me alike.
Also in the last month I have polled members on types of HNC they have and made the following pie chart with Google Sheets.