As I thought would be the case we can’t agree on the sub sections
If there are categories for bone, brain, liver, lungs then please please a category for incurable regional recurrence/regional metasteses whatever. There is nothing, absolutely nothing in the whole of the BCC information and resources which provides information about this…
Something on final stages as a category?
Something on trials and treatments…
oh we’re never going to agree…maybe just keep it as it is!
Jane
That sounds good, Jane (incurable regional recurrence/regional metasteses), I didn’t mean to exclude these in my suggestions but was wary of making a list of subsets too long because we are unlikely to get anywhere via that route.
Jenny.
On reflection think should scrap - have i got secondaries as we are not medical experts and they should look at worried or watever itt was Jenny suggested.
Happy to go with main areas of spread, bone, brain, lung, liver and incurable regional recurrences
Still would like something about meeting up for secondaries so not scouting around different forums for infonand would like to include soemthing about the emotional issues which effect us all and maybe as jane suggested including final stages within there as again don’t want too many subsects.
Would like to see something about children as sub heading specifaicclly for secondaries or include partners,family fiends in that part as we get a lot of posters poosting on behalf of their family or their family.
That gets me to 9 which seems too long.
Just thought treatments and trials would be good - look at the length of thread of going back on taxol so that’s 10 subheadings. Must be able to shorten it
I’ll sleep on it and see what others thoughts are. still think it best if we can get it subdivided though.
I still think a section on Have I got secondaries is important…and a useful bridge across the artificial divide of those with primaries/those with secondaries. No we are not doctors but there’s Have I got breast cancer section which is used a lot…we’re not doctors there either.
But probably in a minoroity of this.
Jane
Then you are in a majority of 2 Jane! (you see sometimes we do agree!) I think it is a good idea because even if others think we are not qualified to give advice the questions are still going to be asked and even if the majority of responses are - you need to seek professional advice - it could just be that nudge that pushes the enquirer to do just that.
dawnhc
Thanks Dawn.
I agree!
Often there are wowen with possible symptoms of secondaries who have been fobbed off by their GPs rather than referred back to a breast unit. You have replied to such a situation today and it is unfortunately too common…we are not doctors…but I am not the only one to have learned from bitter expereince that sometimes some doctors can get it wrong.
Jane
Overall I would prefer not to have sub-categories under Living with secondaries as it would make navigation of ‘latest posts’ more difficult (I think!).
But if we are to have sub-categories I would prefer not to divide by site of secondaries, as useful info arises from posts of people who have different manifestations of secondaries from myself. And many have multiple sites anyway.
Also agree that ‘Do I have secondaries’ would be useful as advice to see oncologist (not GP) still needs to be drummed home. Also I think we do have expertise on symptoms we have experienced, even though advice should be to consult the medics.
So perhaps:
Medical issues (to cover all secondary sites)
Have I got secondaries?
Communicating with others about secondary cancer (to include friends, partners, children)
Emotional issues/rants
Final stages
Meet-ups
Not sure how a decision can be made on this… there are web tools that allow voting on ideas (I have used IdeaScale) but BCC would need to set that up. That might be something BCC would like to investigate anyway, as part of their wider work on getting feedback on their proposals? Maybe?!
Lottie
I really like lotties proposal for the division of the board and think the categories are quite good, I also think that her idea of on line voting for board changes etc would be a fantastic way for BCC to get good feedback quickly.
cathy
I think you’ve done it Lottie…like the divisions. And medical issues can include trials and tretaments so I think everything is covered.
Jane x
I also agree with lottie’s idea
Debsxxx
Hi All
It seems like every ones in agreement of the following categories.
Medical issues
Have I got secondaries?
Communicating with others about secondary cancer (to include friends, partners, children)
Emotional issues/rants
Final stages
Meet-ups
If this is the case the categories will be created on Monday.
Best wishes
Sam (BCC Facilitator)
Maybe Have I got secondaries should come first, it looks o.k. to me.I am sure the others will be along soon.
Love Debsxxx
Hi…I’m with Jenny and Kate in not wanting a Have I got secondaries thread.
I feel we will be inundated with worried forum users and we just can’t offer any cast iron reassurances, which is what many worried, anxious posters will understandably be looking for. In fact having such a forum may lead to some seeking our advice instead of going to their GP or Onc. It could also delay many others from seeking medical advice. All we can really safely say is see your Onc or GP or go back to see them and a BCC sticky with some BCC advice about what to do if worried might be just as helpful instead. Perhaps with a phone number to call too. Maybe such a catergory has a place in the Worried forum? Although the only advice can still only really be to see your Onc or GP so perhaps a BCC sticky is what’s really needed there.
Also a trip neg secondaries forum ?..I’m er+ but it’s surprising to me that we still don’t have such a forum.
Belinda…x
I’m still unsure about the ‘have I got secondaries?’ part and like Belinda’s suggestion about it and using the sticky facility but have it in the ‘worried about’ forum instead. Just think that so many people seem to visit the ‘living with secondary bc’ and get very scared when reading other threads there so that way it would meet the need of many people’s questions and not tempt people to hunt and read threads that scare them.
There is so much ignorance about signs of secondaries - worringly amongst the medical profession as well as any person with symptoms that are worrying them. However, I think that the place for such a thread iss in the ‘worried’ part of the forum. On reflection, I think our inpot is very useful in that we can give reasons why we think they should consult their GP/Onc and then empowers people to go to seek out help.
I like the idea of ‘final stages’ but wonder when do we enter that stage?= but at the same time, it doesn’t particularly matter and you can’t draw up guidelines either as I think we all would feel differently when we have entered that point. Again, I think it is a useful and much needed area to be discussed so we can all use our judgement when to post there. It also makes it clear to people what the content of that thread is about content and people won’t accidently read something very upsetting.
I think some sub-headings will be used more frequently than others especially the medical issue ones but to split it up into specific sites makes too many sub-headings and is a catch all area for secondary sites, treatments and trials etc.
I feel it is very important that we do have an area for the emotional part of living with secondaries as that occupies a large part of what living with seondaries is like and would include the children/partner/family and friends part/
Trying to mentally go through the existing threads and trying to place them in the sub=headings that Lottie suggested and think it does cover all of them.
Still hoping that there can be a privaate/closed area too as aware that some people want to express their true feelings but can’t as it is open for all and you never know who is reading your posts and that is inhibitive.
Maybe Lucy, you could list the current threads into these sub-headings so we could all see if it works oor if there is a glaring area not covered.
Sorry about the long post but just found it helpful to put my thoughts down and to see if other people agree with my interpretation of Lottie’s sub-headings.
I’ve been asleep tonight but have woken up and having trouble getting back to sleep now after a rather upsetting day so glad these forums are here to occupy myself.
Katex
We are still divided about Have I got secondaries then?
I do hope this category remains for reasons I’ve written earlier. As Lottie says we do expereince of symptoms which can be helpful to others.
Kate: I envisage final stages covering wills, funerals, hospice care, end of life care etc so perhapss the title is wrong? Maybe it should be called End of life Issues?
I don’t think there’s a need for a separate trip neg forum in secondaries…it can all be dealt with under medical issues. If trip neg then her2…etc etc.
On reflection too I think the emotional/rant bit should just be the general title ‘living with secondaries’
Jane
I still think Have I Got Secondaries would of been helpful to me, so that would be my reason for adding it.
Treatments, again being able to check how others deal with the same chemos, byphos, scans etc has helped me enormously.
End of Life Issues, are important to us all, it helps us sort things out for those we leave behind. Kate’s organization skills on this have been priceless. Memory boxes and letters, she detailed it beautifully.
I understand what Kate says about women scaring themselves but it is just like the t.v. if it is not suitable then click off.
Debsxxx
I get scared reading posts in secondaries…as I contemplate what might happen to me further down the line. None of us can or should protect others from getting scared…we can’t…it goes with the territory.
Jane
I thought about the "do I have secondaries " thread in the division and on balance I think we should have it (although I understand everyones reservations). We already have postings from a mix of people - worried well, and those who clearly have a problem that could turn out to be secondaries. Having a sub division directs them to the right place, and we can offer support to them - in particular to those going through the horrible process of being diagnosed with secondaries,
. maybe BCC could do a sticky in the section as well.
People don’t have to read it! I sometimes don’t read posts here if I am feeling a bit low.
Cathyx
My last post on this…I promise!..as I’d like to hear what others think…and at the end of the day I go with the flow. If the majority of us want a Have I got…? then that’s just fine.
I think this is THE most supportive forum on the BCC site. Anyone newly diagnosed with mets is welcomed and we can offer real advice on treatments we have had ourselves and help people at a time when life is turned on it’s head. But I for one had no real signs of my secondaries or bc until my hip spontaneously fractured. For some the signs are swollen nodes etc, visible signs but for many the signs are so vague or non existant…there’s no one thing we can all look out for…a backache may be ‘just’ a backache. Over the years we’ve had posts from people who understandably are looking for us to say don’t worry all will be well. I’d go so far as to say the people that do tend to post here about secondary worries are possibly putting off going to their Onc or GP either because they are very frightend of the outcome or they feel they may be wasting their GP/Onc’s time. We can offer no assurance that they don’t have secondaries. I also feel a Have I got secondaries forum may also be too much, a burden, at times, when we have more than enough to cope with on our own secondary plates. OK I’ll shut up now. 
Belinda…x
Belinda - I agree this is the part of the forums where I find the most support and am amazed at how supportive everybody is to each other.Ok - we have our little disagreements from time to time but that is healthy to debate things and hopefully, we don’t get too upset if we do disagree.
To be honest, I think the reason why I suggested putting the ‘have i got secondaries’ in the ‘worried about’ part of the forum is so people can answer that if they feel they have the time and relieve my guilt when I don’t answer them!!! Like you, there are so many other posts I want to post on and don’t always have time and so tend not to prioritise the 'worried … ’ part which is probably wrong of me.
I think we should go with whatever the majority think and see how it goes for 4 - 6 weeks and review cos otherwise it will never start.
More awake now and slept well in the end but really cold today despite the sunshine. Hope it’s sunny wherever you are - def lifts my spirits
Katex