I hope I’m not seen as divisive, but in several recent posts on the Secondaries forum there has been discussion about which should have priority, campaigning by (and on behalf of) us who have SBC, or mutual support.
Please don’t be shocked, but my own priority is to GIVE support and challenge others (maybe those of you not as far along the SBC road as I am) to do the campaigning bit. Maybe this is because I’m concerned that those diagnosed with the “double whammy” will find this BCC site and, sooner or later, realise its inadequacies. (Yes, I know that BCC has limited resources.)
There is a Facebook group and private forums for those of us with secondaries, run by volunteers with personal experience of SBC. Newly diagnosed people won’t know how to find these forums.
Can’t anyone see what I’m saying? I’m not the kind of person who expects to be posting here from my hospice bed (though I admire those who have done, I honour their memory, and I know some of them were vocal about campaigning… and still it doesn’t happen…)
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Neither?!
Forgive me if I’ve got the wrong end of the stick here, mrsblue, but I don’t really think it’s a question of which of the two should have priority - both support and campaigning are incredibly important and BCC has different teams and separate budgets for each.
My understanding of the points raised in recent discussions is that it’s more a question of what the priorities for campaigning should be, how BCC should decide on those priorities, and how BCC’s campaigns can best support those of us with SBC by raising awareness of the issues which are important to us. In other words, how support and campaigning can work together to achieve the best outcome. And fundamentally, with the recent survey about the SBCAD, whether the aim is to raise awareness among the general population or support patients with SBC.
So I suppose for me, it’s a question of clarity of purpose, even if there isn’t much clarity in this post! 
Please forgive my chemo brain if this reply sounds muddled. 
I try and offer support where I think I might be of any help. I think I have only asked for advice from the forums a handful of times over the last ten years. I’m quite a private person in ‘real life’ and by nature I ask advice from friends I’ve met or private messaged. I would campaign, have done, via letter writing or similar.
With referance to BCC, I’ve just typed a long waffly paragraph and Angelfalls has put it all so clearly so may I agree with the above.
Thanks for your responses, Angelfalls and Belinda… of course campaigning and support are both important, but I’ve not noticed any improvement… wondering if anything will happen in my lifetime, whether by BCC or some other organization.