I'm following Jennywren's suggestion to move "Have many had secondaries after clear nodes?" to the Forum feedback area.
I can see that an area for private discussion for the mets group would be good, I can imagine many things that need to be discussed but that you wouldn't be comfortable putting on what's effectively a public website. Certainly I as a person without secondaries have several issues I would like to open up - but I'm not going to on here. I'm only too aware of how easy it would be to be identified as the author should family, friends or acquaintances use this site - which is not as unlikely as it used to be. So I'd appreciate a private area also for people without mets, but I really don't see how that would be managed. Managing entry to a private mets forum at least seems feasible. Ann asked how it would be managed - my only suggestion is through the moderator, but those of you that would be concerned might have more ideas.
Lyn I dont think there is any problems ensuring the right people have entry to a private subforum. I believe the new set up allows for just those sort of controls to be set in place simply by clicking on a request to 'join group' the system automates a mail to the moderator who, once establishing the request comes from someone with secondaries, can give them access.
Yes, I know that - but (don't take this the wrong way) - there's a certain voyeuristic element of seeing people in distress. So I can see people applying to enter the "private" area for reasons that don't contribute to the forum, and it would be very difficult to establish grounds on which you'd admit someone from the wider group. It would be much clearer in a mets area (though the same problem can occur) simply because there are fewer people involved, and they do tend to get to know each other pretty well.
I agree with Lyn, I would want some sort of checking from a moderator and yes a private place for those with primaries too. The mets board I use is by invite only so it's been a safe place to post. Have copied my last posting, below, from the original thread... Hi to all.. I don't think there would be any noticable change to the 'open' secondaries forum. In 2005 a large group of us posting here started a private mets only board, I can't think of anyone who didn't continue to post here and now there are the very large number of forum posters who are part of bcpals who also continue to post and offer support. We all seem to still log on, welcome new posters, offer advice and support, the secondaries forum has continued to be a very supportive place even though many of us now access other boards. I hope we can have a closed forum alongside the open one..I know the shock of coming to terms with my own diagnosis, how to live the rest of my life, how to prepare for death whilst trying to live well..coping with the uncertainty..how my family live with my diagnosis, constant trips to the hospital, ongoing treatments, some symptoms and much more..these were all topics I felt (at times) unable to share (still do) on an open forum. A private place here especially on first being diagnosed stage 4 would have been an additional and most welcome lifeline. ..xx
I hope the new website ...which sounds good...could have the capacity to enable private forums for all kinds of groups and purposes.
I very much hope there continues to be an open secondaries forum on BCC and have explained why on the other thread, but I know some people feel strongly about a more 'private' one and hope that can be accommodated too.
I think I've said it before...but I'll say it again...what has helped me as much as anything in public forums is the opportunity to then go on to make individual or small group cyber/real life friendships with others one feels a kindred spirit with...for me this sense of identification is really important, but isn't necessarily linked with the stage of cancer the other person is at. Recently I've exchanged some wonderful mutually affirming e-mails with a relatively new user who has a primary diagnosis (you know who you are...and my thanks) about life, death anxst issues...superb and I guess our connection is to do with the kind of people we are, our histories, life philosphies and a host of other stuff..not just the stage or our individual cancers. I feel lucky now to have a network of cyber friends with who I variously e-mail about slightly different kinds of bc connected things.
I have been following the original thread and now this one which has branched off to discuss a private secondaries forum. I do think there is a need for both. When I got my 2ndary dx in May the current style of forum was invaluable, as it still is. I gained so much advice, support, inspiration and comfort from the fact that so many ladies are dealing with something that I felt I was on my own with. Long may the forum continue. I do agree that more sensitive or private/personal issues may have to have a separate space and my thoughts are it could be difficult to administer (as Lyn says) to keep it private. It sounds like other forums, which I don't belong to, have dealt with this and this would need to be looked into. It would be nice to express your feelings and experiences without the need to apologise - as I felt I had to after the postings on the original thread. Again, following another comment on the 1st thread - how about a warning! Do Not Read any of the Secondaries threads unless you can handle the issues raised ;-) At the moment I tend to communicate more with my chemo group as I'm going through the joys of that but we are also a mixed bunch in terms of dx. I'm sure once that stage of treatment is over (for now) I will be in touch more with us secondary ladies and again your/our insights, advice, experiences will help me as well as many others out there. I hope the new BC forums are able to accommodate as many of our and other users/groups needs as possible - I think it does a great job already.
I respect the wish for a private secondaries forum, obviously, for those who want it; I - as far as I know at this moment - don't have secondaries, but I hope you won't mind my just saying my view, which is that I have found many different areas of this BCC forum invaluable - beyond valuation because so useful - for gaining information, and insight, into aspects of bc and that I did not get enough from my doctors and nurses not just because there wasn't time or they forgot but because they were unwilling to give me everything and what they gave came with 'positive spin', which is not the truth. So I would like to be able to hear from people who do have secondaries because it may only be a matter of time...
I agree with you Snowwhite, you just never know.Now i'm nearly through chemo, I look to the mx sites, mx done, then get ready for rads, always trying to stay one step ahead so that I am prepared. Same with secondary sites, nothing to do with voyeurism. I wouldn't want to be cut off from secondary info by having an invite only site. It/s being prepared thats all. I have always held back from mentioning on threads about what happens when or if I die relatively early. Should I start making memory boxes, letters etc to my children (now 21/22), how do you make things easier for people/family left to deal and come to terms with it. I don't want to frighten others, especially the more sensitive women who find everything too hard to come to terms with, I've just had longer to come to terms with it I suppose. I'm not being negative!!! A realist I would say... not pie in the sky) When I was first dx there were sites that I couldnt go on, now I can, surely it is up to the individual to know what they can cope with at any given time. I live up to being a Capricorn, too bl..dy practical by half. Hope not to offend anyone.