Prostate Cancer Social Group? John and Pat are leading way

PCFA

When John and Pat Trollor, convenors of the Bathurst District Prostate Cancer Support Group, were faced with low numbers and dwindling volunteers, they pulled their heads together to figure out a new way to reinvigorate the group. The outcome? Next month, they will launch the first Bathurst District Social Group in an effort to adapt to the changing world, appeal to younger men in the community, and help boost their numbers.

John and Pat shared their story with us this week on how the transition came about.

“Our transition to an informal group has come about for several different reasons all based on the lack of interest in continuing the way we have run since our formation in 2000 as one of the first rural NSW groups.

Our numbers have been low, but steady, consisting of older men and women who have volunteered for years now with less passion to be on the executive or attend awareness and fundraising events. With Covid and this digital age we have found that there are fewer and fewer new members. It has always been the case that men, especially young men, with this disease are reluctant to attend support groups. Now that so much digital information is available this seems to be more evident.

We are hoping that our informal meetings with no executive, no business, no commitment to run or work for the group will encourage men and their wives or partners to come along for a chat and to share experiences, and hopefully gain some helpful information and support.

We will continue to broadcast our existence, to be available to provide information when asked and to give talks about prostate cancer. The first thing we will do is to ask those on our mailing list and those who turn up how and when they want to meet and what they want to get out of it. Our affiliation to and support of PCFA remains unaltered.

As we are about the set out on this venture it would be presumptuous of us to offer advice to other groups which have struck similar issues. Let us just say that this has not been a sudden decision, we have taken advice in making it and we wanted to try something different instead of just passing away. Accepting that new members are fewer than before we have to ask ourselves, “Are we still relevant in this digital age, if so, how can we change to help and support men and their families with prostate cancer?”.

We believe that the answer to the first question about relevance is a definite yes. Digital information is valuable but a face-to-face sharing of questions, concerns and worries still is the gold standard of help and support. We still have a role. Our members have always said that doctors are the experts of the disease, but we are the experts of the experience. Nothing replaces talking to someone who has been through your experience. We have to make ourselves relevant in a way which is acceptable to those we are trying to help and support.

So why do we still keep going after 22 years? Because we believe that we still have a role. Because we know the anxiety and confusion which reigns when one has this as a new diagnosis. Because we have seen men get conflicting views or negative attitudes from the medical profession and they just want to talk about. Because we have seen that men can be misled by information online at times, or need help understanding how it is relevant to themselves and we know shared experiences help. Because we know that talking to a local who has been though it can make a huge difference.

So here we are. We will keep you updated on how we go.”

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