Perhaps the idea of having it under the Worried section could be a good idea. There must be a number of those with primary who have been anxious at some point that a symptom might have been secondaries - so they too have been through that and can help. They may not even read the secondaries forum. As Kate says it takes the burden off us to feel we ought to reply and BCC could put a sticky in it referring them phone the nurse or to their own publications.
My major concern as I said before, and Jane also said, is for those who go to their GP and are not taken seriously - it happens too many times. We can help them to ask the right questions and press for a referral to their breast unit.
Perhaps it should be one of the ‘information’ posts with a little ‘i’ at the top of the forum. BCC can post whatever info they feel appropriate and it doesn’t preclude anyone worried from posting there nor anyone who wishes to reply from doing so.
As an example, If someone were to post ‘I have an app for a bone scan to investigate secondary spread, what should I expect?’ we can honestly share our experiences, but when someone states ‘I have a bad back pain, have I got secondaries?’, I don’t feel qualified to answer and I don’t think the onus should be ours to advise in this capacity. My concerns in the past have been that I have often felt almost ‘obliged’ to write something in reply to the ‘worried’ posts and all I have really been able to say on these occasions is something of the ilk ‘I hope it is not secondaries but you really should see your doctor’.
Will go with the flow by and large - this is just what I think.
Personally I think “Have I got secondaries” should be part of the “Worried” section mainly because (as Dawn has already said) there are people with a primary dx who have also had “scares” and will be able to offer as much support as those of us diagnosed with secondaries at this point of uncertainty. However they may not look in the Living with Secondaries section. We obviously have a lot of advice and support to give when someone is recently diagnosed with secondaries but upto that point I feel the posts would be much better elsewhere.
My other reason to put it elsewhere, is it then makes it quite clear that though open to people with a primary dx, this section is for those of us with a secondary dx who by the very nature of our dx, may have a slightly different perspective on life and death. People can then choose to read/post or not but they can’t wander in, as it were, by mistake.
I think having this as sub forum of Worried is an excellent idea.As someone with a Triple Neg dx I worry a lot about symptoms which may or may not indicate spread.I know I have to go to the doctor eventually but along the way I find it an enormous help to post about it and have someone share a similar problem,suggest different causes or even just remind me of the 2 week rule.No one need feel obliged to reply but oh how those replies help.For me just the fact that someone has read what I have to say and, for a few minutes has given her time to share my fears,means the world.
Kay - that sounds a much better explanation than my very clumsy one.
Horace - I know what you mean about getting a reply. It feels very lonely when no-one replies to your question.
must go - friends here now
Kate
I was really amazed when I read that pamidronate and dental work may equate to necrosis of the jaw. Now personally I don’t want that kind of info and others like it lost - because I know I shall forget, and there will be others after me.
Where does that information go? It certainly should go somewhere and stay there on a permanent basis
Moderator - As you can see we’ve hada long discussion about what we think is neded and not needed so is there any chance of letting us know if it possible for you to break the threads up into the sub-headings we suggested. Otherwise, I feel we’re in danger of losing momentum and this is such a busy forum at the moment and it would be a shame to lose the impetus.
Does anyone else feel the same way or is it me being bossy again??!!! Second thoughts - don’t answer the question - I know the answer. My hubby is fed up with me bossing him around!!I would just like to see this part of the forum broken up as we suggested as it took me ages to scroll down to this one!!!
Looking forward to wednesday and meeting who else is there? Don’t think I’ve got any shoes to rival our Debs o expect I’ll be wearing my Marks and Sparks boots or Clarks boots - how very sensible!!!
Well I am ‘worried’. I am not sure that I like the idea of breaking up into sub-sections - yes I know that you have all decided it is a good idea and it will probably happen anyway. I hope it won’t constrain discussion such as the ‘end of life - good death’ one we had some weeks ago now. That thread ran and ran and, as such, the conversations ranged widely and were all the more interesting for that. How would that thread have sat in the new categories?
Because this forum isn’t sub-sectioned I do glance at many of the threads, if they are of little interest to me I can choose not to open them, but I do know they are there and sometimes it isn’t the subject but the person that makes me read a thread - there are many of you who I have got to know over the years whose cancer spread is unlike my own. Would I get to know you if you were tucked away in your own secondaries box?
I have often found much of relevance to me, even if not directly, in conversations that I would not have considered applicable at first sight. What about those who have very rare types of secondary spread - they could find themselves in a sub-category of one or two people and I would hate them to be denied the support of the rest of us (even if we cannot empathise we can sympathise)
I suppose the sub-section debate will sort itself out as those that aren’t used will fold - ‘use it or lose it’.
Well I have had my say - in what category you would put it - I haven’t a clue.
blondie
Blondie - I think that was why we were trying to get the physical sites of secondaries all in one category, emoti.
onal issues in another and keep the breaking down to a minimum so it is relevant to all.
I thought we were suggesting an end of life subcategory so the ‘end of life- good death’ thread would be in that one.
It’s difficult - at the moment you can see the first poster and last commnet on each subject and I presumed that would come across too.
Good to see you on live chat tonight blondie - hope to ‘hear’ from you soon. Thanks for your contribution. Good to see a couner argument
Kate
There was a consensus on a new category under worried, which I created yesterday.
For the sub-cateogies under Living with secondary breast cancer, I suggest the following categories:
Living with secondary breast cancer (all the posts currently here will be moved under this new category)
Medical issues
Talking with others about secondary cancer
Emotional issues
Final stages
Meet-ups
We can always rename, add-more or delete if necessary.
Are you happy for me to do this today? If yes, I will do that at 3pm (I don’t want to close the forums so you will see new categories appearing as you are refreshing the page).
I’m not sure I’d know wheteher to post in Living with, talking about, or emotional issues…they all sound the same to me. I reckon it could all be dealt with under Living with…what do others think?
Do we alos need something to explain the intention of final stages. It might inslude things about wills, funerals, hospices, death, place of dying, memory boxes, etc…these things not necessarily done at ‘final stages.’
I think Treatments instead of Medical Issues. When I have to change treatment it always throws me in a panic and it is such a comfort when I can go to a thread where people have experience of that drug.
Love Debsxxx
I think it would be ok to start again with new topics as prresumably the others would be locked and archived.
However, the exception being the 'having secondaries has made me go gormless thread’as it would be difficult to start that again and for it to make sense and the one from Terry about about ‘when to refuse treatment’ as I think for Terry and his family it would be good to keep that as a complete thread incase they want to print it out.
Some of the other older threads have moved on from their initial start even though they are still active so would be good to start again.
Don’t know how some of the newer girls who have just started posting here on secondaries feel about their threads - thinking of ‘scared’ by DoseyDee and a couple of the ‘just diagnosed with bony mets’ ones started in recent days. Could you transfer across say about 5 - 10most recently posted on threads and leave the rest for archive/inactive?
Otherwise happy to restart all threads if that is the majority feeling