Yes agree Holeybones. The structure of these forums is just fine. I recall that the Current Issues forum was set up so that serious threads about ‘hot topics’ could be aired without getting muddled up with the jokes in the Coffee Room (as the old forum was called.)
Now we have chit chat and fun and we have current issues. I use the latter a lot and rarely visit chit chat and fun. If some people want to do the opposite thats fine.
Yes its been great to see the measured and thoughtful posts on this reopened thread…sad though to see some contributions on the earlier thread.
I know that some people like myself are much stronger ‘information seekers’ than others. The US author and breast cancer advocate Musa Meyer distinguishes ‘information seekers’ from ‘minimisers’ and I think its a helpful distinction in making sense of why some people get upset when facts and statistics are discussed. I’m no mathematician but I do think poor old statistics get a bad press. We need statistics to make sense of the world, to plan, to understand, to make policy. If we didn’t count how many children were born there wouldn’t be enough schools, if we didn’t count how many people die of breast cancer then we wouldn’t know how many survive (which is why its scandalous that no one has been counting the numbers with secondary breast cancer and why it is now the subject of a BCC campaign.)
Before I got breast cancer I knew both good and bad stories about breast cancers I had friends (and many mothers’ of friends) and acquaintances who had died very quickly, who had died after a while, a lot of others who were alive and well years later. Only since learning more about the disease have I understood why some fall in one category and some another. I was diagnosed with locally advanced breast cancer and the time of my diagnosis was the most frightening and scary of my life, but I’ve never been any different in wanting to know, gather information etc than I am now that I have a regional recurrence.
In the ‘old days’, not that long ago cancer was talked about in hushed tones, if the word was used at all (‘she’s got the big C’ my mother used to whisper). Cancer patients were sometimes not told their diagnosis, let alone their prognosis lest it ‘upset’ them. I think we are more enlightened now but at times I fear hardly more sensible. Now it seems to me there’s a socially accepatable way of talking about breast cancer…often littered with litanies about looking on the bright side and full of anecdotes about how having cancer makes you a better perosn. I think this kind of talk can be just as destructive as the old way of talking.
Yes we all want different bits of information,yes we all make sense of that information and what it means for us in different ways, but please don’t blame others with cancer for wanting to talk about the disease in a way which leaves you feeling uncomfortable. Cause actually I’m not comfortable with the myths which sometimes pass as truths. Am I not allowed to respond to a woman with primary breast cancer who is scared of chemo and tell her that I was scared of chemo too, and yes actually I still am, because here I am having more 4 years later?
As for a group of forum members getting together to discuss whether its OK to interrogate statistics well Holeybones is spot on in her suggestions. Maybe a group of forum members meeting is one way of getting feedback but there’s stuff like the contact buttons that I’d want on the agenda.
And finally…I’m not sure I agree with you Holey that finding secondaries early, before symptoms, prolongs life…but that’s another debate…thank goodness we don’t always all agree.
Jane