New support forum


We have updated our forum. Because 99% of our discussion is in our closed Facebook group, the forum has never really taken off apart from with a very small number of people, mainly committee members. Some of us are experienced users of online cancer forums like the Oral Cancer Foundation and Mayo Clinic Connect but we have reluctantly* conceded that Facebook is easier for a start-up group. Discussions are shifting from the old forums to the closed Facebook groups across the world I believe. 

However, we want to respect and acknowledge the needs of patients and carers who are not on Facebook. We see the forum as a place for lengthier discussions and easier access to older dialogue. In Facebook, subjects can get lost down the page: on a forum, topics show up in a handier list. 

Why did we delete the old forum? It was because the limited discussion we did have was a bit testy and we want to change tack and make it a "Support Forum" where people can vent, discuss, record their story, ask questions but do so kindly in accordance with our values. These are ERIC: engaged, respectful, informed, caring.

We know that there is often a lot of unresolved anger amongst cancer patients like ourselves when function has been lost, faces disfugured and lives changed forever. It's healthy to vent, to have an outlet for anger as well as support but we want the overall tone to be friendly and caring. There can be a lot of fellowship amongst people who have been through the same thing. The shared suffering inspires a special cameraderie and kindness in a well run forum. 

At the moment, moderation is turned on. We hope this doesn't slow things down too much. 

Topics we have started on the new forum so far are: dental issues, palliative care, radiotherapy. We will soon add the topic of caregivers and whanau. Anyone can add a topic. 

*In 2016, we hoped our shiny new website would attract more comment and discussion. Our vigorous Facebook group has preempted that. The website attracts a lot of viewers but not many commentators. Please join us!



E-mail me when people leave their comments –

Diana Ayling

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  • The new format does not work.

    There is no debate.

    We need a new Forum.

This reply was deleted.

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