Many years ago, those of us with secondaries asked for a specialist Healthy Living Day geared up to our needs. We’ve asked repeatedly for such an event over the years but for some reason, we can’t have this. What we wanted was a chance to meet up with others in our situation, get information about secondary breast cancer and then the pampering part of the conventional Healthy Living Days wouldn’t have gone amiss.
Obviously, as I’ve had secondaries for several years and been through quite a lot of treatment, the information part would now be to basic for me, but I’d still like this to happen for the newbies.
In that dim and distant past, a small group of us with secondaries, decided in the end to have our own “Unhealthy Living Day” at our own expense. Because at that time we could email each other via a BCC facility, we could arrange to meet up. The first meet was two days in a hotel in Coventry (chosen because it was fairly central). BCC warned us that we were putting ourselves in terrible danger meeting up with strangers in an unsupervised environment, but we went ahead anyway and it was a great success. Further “Unhealthy Living Days” followed over the years in other parts of the country. Obviously, we were able to arrange the socialising we wanted and hotels chosen usually have a spa, but the chance to get information from health professionals was / is lacking. Some of you might find going on one of those who be helpful if we could be allowed to contact you?
We were told that the Secondaries Taskforce would arrange suitable events for us, but anything on offer has sounded dreary and low budget. One awful suggestion was for a series of short meetings in Oxford where we’d sit in a circle (closely supervised of course) talking about how we feel.
I don’t know why we are always given such second rate treatment compared to those with primary breast cancer. BCC apparently begrudge spending money on us and even seem keen to thwart our efforts at self help.
When we ask awkward questions about what this Secondaries Taskforce actually does, we are told to email them. There is clearly some embarassment about how little it achieves and hence, no wish to reply on forum.
We were repeatedly told to be patient and await developments from the Secondaries Taskforce, but far too many of us have died since we first began asking for appropriate support services. Others, like me, are much frailer now and can’t guarantee to be well enough to attend something scheduled too far into the future.
Holey.