This is edited version (below) of my original post- I don't want to stop the flow of the debate re topics that should be covered in secondary forum!
While I have been on hormonal treatment and have had good responses, I will never be out of the woods. But I still hope for something that I can't define. It is part of my personality to look for hope and to try and be positive. I don't want to offend, but there is nothing soppy or sloppy about any of my positive outlook, my brightsiding, just my way of living after being given a reprise and realising how wonderful this world is. Some people may judge me for being cheerful and hopeful (though not optimistic, 100% realist, I'm not even afraid of death anymore (I don't think)) but they really don't have the right to do so. I am thankful for every single day and however it is defined, hope is a wonderful thing. So, I'm happy to see posts with a bit of positive thinking etc- why not?
My last comment was a very tired one last night...kind of in repsonse to your query celeste.
Basically I think there needs to be a distinction between the soppy sloppy thinking of 'think positive' and 'brightsiding', and an understanding of the much more complex concept of hope. I get my ideas on this from a wonderful book called the Anatomy of Hope by Jerome Groopman. He links hope to reality and argues that 'true hope' does not flinch or turn away from reality.
If hope is only to be found in 'good news' stories of successful treatments and unexpected longevity where does that leave anyone whose tretaments fail, anyone who gets no 'cancer free days', anyone who dies fast and hard? In some unspeakable category of 'bad news'? I think each of us seeks 'hope' within the deatil of our own experience...hope may be as it simply was for Jade Goody last week, having one last good celebration, and then hoping for an easy, or less hard, death.
Hope has to be more than simply hoping not to die yet...though that's a nice thought.
I just posted a reply here - where has it gone?
advancedbc.org. (musa's site) and bcmets.org are very informative sites. Do we not have a 'links' button?
There are lots of other good sites out there, the 'young survival coalition, ibcsupport.org and many more
A long while ago now some of us discussed an Australian booklet, written by stage 4 women, called 'Messages of Hope.' There are no happy ever after endings, just accounts of women living as best, as fully as they can with stage 4 bc. This is the link to the booklet but in case the Mods eventually remove it if anyone still wants the link please send me a PM.
I live in hope I really do. But sometimes its hard to stay postive. Though I am 99% of the time. I don't feel hopeful today.
Ps I just bought the Musa Meya book. I usually turn to books when i feel I need more guideance and I went on amazon, put in advanced breast cancer and there it was! Never heard of her but moments before I had seen reference to her on this thread. I took that as fate!
I've just looked at the Musa Meyer site. It's ineresting. The things she thinks we need when first diagnosed are, information, support and hope. It seems to me without the positive stories we are rather missing out on hope arn't we?
Why in this context, does it seem that hope seems rather unfashionable? Or is it just my imagination?.
I love the way some of these threads evolve! What a huge range of interesting topics it is generating.
As someone who has been NED on scans since Sept and of whom the onc has even used the term "in remission", it is indeed possible. However I still class myself very much as someone with secondary/advanced cancer and in fact not in any form of "remission" that Joe Public would recognise as such - ie only possible by continuing on chemo (xeloda). I do consider myself as "lucky", Jane, but with the knowledge that it might change at any moment and indeed will change at some stage - I will die of breast cancer but not as soon (probably) as I thought this time last year. Not sure again how "lucky" most people would consider me - all things are relative though!
Think one of the problems with trying to support people who are newly diagnosed is that we inevitably try to support in the way that we would like to have been supported. I desperately wanted information (rather than emotional support) but accurate information. Some of the things I was in fact told were not relevant to my situation (and indeed a few not actually correct). The problem was that I was still gaining knowledge and it is only now that I can see some of the things I was told didn't apply to me. This is largely why I don't now always post on the "newbie" threads or if I do only in very general terms, unless it is someone who has liver mets or is asking very specific questions that I do feel able to respond to.
I continue to find it difficult to post good news for the same reason as you have identified, Jenny - there nearly always seems to be someone going through a real crisis and posting good news then often does feel inappropriate. I also now (as a "lucky" NED person) find it equally hard to post about some of the things I find difficult, particularly emotional issues. I, like you Jane, have found the Musa Meyer book so helpful in terms of helping me work out in my own head some of my feelings/fears etc. I can identify with people expressing exactly the same things as I am feeling (and much more eloquently) but also there are people expressing things that are contrary to what I am feeling/experiencing. Helps focus me on my own feelings and clarify what I want. I, like you Jane, don't always get that from the forums although I have got it every time when I have met others face to face.
Have a feeling I am now way off topic! K
Oh Jane the naughty step..it feels like double homework and no sweets here at times! Did we ever get a response regarding the Gormless Shopping thread? Probably not.
The Musa Meyer book is so hard to get hold of now. The copies I've seen on the web are usually second hand but very expensive. Can't understand why it's not been re-printed. I lent my copy to someone and never saw it again..but I can't remember who I lent it to.
Some of the book is available to read on Musa's site, the 3 w's dot advancedbc dot org..(are website addresses still being removed?)
I often feel I'm white water rafting.
I got the headings from the Meyer book...but yes some lucky people do go into NED/remission with secondaries.
I've said before that I can't believe I was the only person reasonably knowledgable about bc before I got it. ie. knew people died of it (a friend and colleague dying as I was diagnosed and I went to her funeral a month later), mothers' of friends who had died, and a friend who'd had recurrence after 12 years and was still alive..and still is with better prognosis than me. I didn't know about grades and er etc but I knew the parameters of possibility..I am amazed how many people seem not to. But I have never since the moment of my primary diagnosis found anything more irritating than people with entirely different kinds of breast cancer telling me good (or bad) news stories which simply don't apply to me.
Belinda...no wasn't thinking of you particularly...just noticing a trend which I think is relatively recent..I think of you as a good old cyber friend..we've walked these boards together for 5 years and though our stories have changed I hope the togetherness of the naughty step hasn't.
The new sub headings are not yet working...I see there's a post in end of life issues about someone with a 'dead' shoulder...
IKEA was a disaster. Will post later!
I can see how when i mentioned 'new ones' you thought I meant the recently diagnosed. I didn't. The new ones I was referring to were the ones whose stories we have not yet heard, maybe they've just found this site. Or maybe they've come back after a long period of absence.
As for the recently diagnosed, of course I believe those posts should be handled with gentleness and sensitivity without compromising their adult status.
What they most need at that time is support and information, not information mixed with concrete!
There is certainly a danger that we withold information because we don't want to rain on someone's parade, there I agree with Jane, that would make the forum pretty pointless for us all.
I really like the title 'Still Here' - I don't see how we can have 'Stories of Remission' since we don't get it.
I hope you will be posting on the 'gormless' thread later Jane re your unnecessary shopping!.
Hi Jane, I'm not really sure from your post but I'm probably one of those 'over protective' posters. For me it's all about remembering how I felt at my time of diagnosis and perhaps that's the wrong way to approach the forum threads. I'm thinking everyone will have had very similar thoughts/feelings as I had at diagnosis and of course we are all very different. At that time I longed for some light in the darkness. I think, for me, it's to do with my being diagnosed stage 4 from the onset but I hope I don't offer any false hope. I just try to say 'hey I'm still here, still well..there are lots of treatments out there'..Especially for anyone newly diagnosed with bone mets I would hope the fact that I was diagnosed with a fractured hip and I'm now well and pain free would offer some hope in the way of treatments, bisphosphonates but I would never say anything like 'you can beat this' or 'you will have a great response to that chemo.'' I wasn't aware that we were being over protective with newbies, to me we are just sharing our stories and saying there will still be good days in the future.' Although there will be some who will have very few good days..but I'm not sure if this is the over protectiveness or un productiveness you are referring to? I definitely have chemo brain today so off to have a think about this.
This is a perennial problem (re Belinda's comments) and one we must accept and live with. Invariably, when one of us is celebrating some small success, the next person is dealing with a setback. I know there have been times when I haven't posted good/bad news as it has seemed inappropriate compared to others' situations. There is no easy way...
Overnight have speeded on steroids since posting. I thought maybe my post in response to celete was over the top...(used the word brightsiding as Barbara Ehrenreich does...and how was anyone else to know?)and sorry if it sounded so. I shouldn't have put myself down though by labelling myself as pessimist and a grump..though I can be sometimes...anyway wish I'd been as sane and tactful as to write what Jennywren has..spot on about why a good news forum is not necessary.
When I feel out of tune with others with advanced disease I always turn to Musa Meyer's superb book on Living with Advanced breast cancer..a Guide to Metastatic Cancer,. I think its brilliant and I always feel immediatly in tune though don't agree with all the comments in there. The chapter headings are wonderful: e.g Dread, Uncertainty and White-Water Rafting, Light and Shadow: Stories of Remission, work and Identity; Still Here, the Anatomy of courage; Final Gifts: Disaese Progression, Hard choices, Last days.
I'm not suggesting any of these headings but just saying it is a wonderful book which encomposses all that I feel about having advanced breast cancer in a way which sometimes for whatever reasons I don't always get form the forums...though when I do its great.
I have noticed on this forum and bcpals more and more recently a tendency for women further 'along the line' to be protectives of 'new' women in really unproductive ways. Its happening more on primary threads where women who have found a lump and ask lots of relevant questions can be told more or less not to ask them until they have to; and some extraordinary 'good news' being made out of recently bad news e.g a woman with a lot of node involvement being told that it really was a good thing that she had it because it meant the cancer had been 'caught' before going anywhere else. And this 'don't frighten the newbies' is beginning to happen on secondary forums too...women waiting for test results who have serious probably mets symptoms being told not to worry till they are sure. That's simply not my approach to talking to any adult...nor actually to any child...though the langusage I would use with a child would be different.
Sorry gone on again , think they overdosed me on intravenou steroids. Off to gormless shopping in the newly opened IKEA in Southampton...hoping to purchase nice cheap cahaampagne glasses to drink out of my forthcoming 60th birthday on the Ides of March...now there's a bit of good news...but being an oldie (well actually the most common age of 54 at diagnosis) I had a head start on most of
Finally it is so sad that women have to apologise for either good or bad news...I bet men wouldn't do it.
I've noticed we often get posters hoping they don't offend or upset anyone if they post about their good news. We've had one such post this week. I think that's such a shame, no-one should feel they have to apologise because they've had good scan results etc.
And equally no-one should feel they are depressing or dragging others down by posting about their bad/sad news. We have posters apologising for posting bad news or for 'moaning' 'ranting' etc.
This is the place to rant, to moan or to celebrate some good news.
As Debs has said both sides of the coin are very much part of living with secondaries.
Surely good news, bad news, is what living with cancer is all about. So maybe we could put in
I love reading good news and I'm sad reading bad news...just want to be 'ordinary' about this.
Anyway another thing...just logged on and there are some new posts in talking with others and its clear the original intent about that sub section isn't obvious...it was going to be about talking to others-partners, friends, children....rather than talking with others with seconsaries. Could this perhaps be made clearer...oh dear maybe sub sections weren't agood idea after all.
And another thing - not connected with secondaries...but now when I click on latest posts they are not in date order...top of the list is one posted on Jaunary 20th...followed by one in Sept 2008...puzzling...
I think they put too much dex in my drip today...I'm buzzing...hence wild posts...
Wow! I don't look through the forum for a couple of days and look what happens. So, now we have categories. I think we can risk a category for sharing good news/hopes/positive thinking. You'll just have to ignore it Jane. Ah, come on, you can do it.
I've had a down day today, so much about cancer everywhere. I have to admit that Celeste's post about the end-of-life followed up by meet ups made me smile- I must be in one of my dark humour moods again.
Regarding a Good news category, we must call it something else. Good news would have so many newly diagnosed people clicking on it and maybe it wouldn't quite live up to their expectations or hopes and would lead to disappointment. But we definitely need a category which allows us secondaries ladies to share happy days and things that make us smile, laugh and occasionally, celebrate. Maybe we should call it 'Rays of light' or something to indicate the lighter sides of our lives?
As I said, I've had a down day but coming on here and seeing posts from ladies who want to share some happiness has lifted me- I need it once in a while.
Those newly diagnosed with secondaries, especially if at same time as primary, may be very vulnerable. And unrealistic! I assumed I would be organising the family Christmas (4 months after dx) from my sickbed. And when I saw the onc to be told results and my treatment plan, my one question was "Are you going to offer me any treatment?" I hadn't a clue, back in September 2006.
Hi Jenny and Fiona..yes you're both right there's probably no need for a forum for Good News..I was thinking as I type (which is always dangerous!) and thought if it was seperate Jane and any others wouldn't have to read..but then again we can all choose what threads we read or skip though.
I agree that for those newly diagnosed with secondaries, as I was last September, that some posts give some sense of hope in treatments is needed. The first feeling is of utter despair and the realisation that it is not an immediate death sentence is a comfort.
I am less than six months in but life for me has been normal. I am lucky enough to be having endocrine therapy which is far less restrictive that chemotherapy. I have been skiing and hope to ride my horse throughout the summer and carry on running my business. I know this happy state of affairs won't last forever and so while it does I intend to make the most of it.
My son is 9 and the more time we can spend as a normal family the better.
I agree with the comment that the forum should be balanced and also that good news stories should sit in the general "living with secondary cancer" thread. That is what we are all doing and there is no right or wrong way to do this and each of us deal with it in our own way.
Could you clarify the difference between Living with secondary breast cancer and Talking to others about secondary breast cancer? Is it not one and the same thing?
I do fear that all the subsections on the site could ultimately be divisive but I'm relieved that the secondary forum hasn't been chopped up too much. It would be a shame to lose the dynamism and intimacy we currently enjoy.
I love reading Good News posts (ever the optimist - not sure about the realist) but I don't think they merit a category to themselves. The End of Life forum is a very important and much needed space for us secondary ladies - given what a taboo, sensitive and controversial subject End of Life matter can be. I think Good News posts should not be equated with End of Life issues, for which we have argued so hard to be broadcast, and should remain in Living with Secondaries.
Now please bring on the good news...
If I hadn't been able to read any 'good news' posts when I first joined here after first dx, I don't think I'd have stayed long! As a still relative newcomer to all of this I think I am slowly coming to terms with the realism of the situation but like Belinda I still seek out posts which will give me some hope. Maybe I'm burying my head, but that's how I'm choosing to deal with the situation at the moment.
Now lets be fair about this whilst you are our forum 'pessimist and grumpy bum' not all of us are and if we didn't have a 'good news/possitive outlook'section it would be one less thing for you to 'comment on'.
We all have come to love your opinons and it is always healthy to see another side but how about for those of us that want to be possitive and lookforward to another day......
could you just humor us for a few hours.
I think most of us here, the great majority, are realists Jane. I also think there's a place for 'good news' stories, a balance as Celeste has said. Treatments that have worked well etc. good scan results. If I'm starting a new treatment knowing someone has had a long time with it and it's worked well is very comforting. I'm well aware I might have a different response altogether but I still want to hear others have done well and others are living well. We now have an End of Life forum so why not some Good News too?. After all ups and downs are all part of living with secondaries. I couldn't function if I didn't have some hope. I will die of secondary breast cancer but for now I hope for good responses to treatments and I want to hear good news stories albeit with no ''happy ever after'' endings. I also think it might help those newly diagnosed with secondaries, those first few weeks and months when you are in such a dark place. Good news, for me, doesn't mean ignoring the seriousness of this illness.
Belinda.x.Edited to add if Good News was a seperate forum we could all choose whether we wished to read it..as we can the End of Life forum.
PS.in saying this I thought added forums would work but not sure they do? I'm now hunting for threads I was reading. Sorry Bertie not your fault at all! I just need to get used to the new look.
......and another thing, it seems that 'talking with others about cancer' is also ambiguous. I think we need to look at a change of name.
I agree with Celeste's last comment - I too would like to hear about people living 'fully' with secondary breast cancer.
I cannot work becuase of cancer - I simply do not have the energy and I do need help with looking after my 3 children. My dad, for example, takes my youngest to swimming lessons, football practise etc and my Mum does my weekly shop and changes beds etc, especially since the spread to my spine, I find it too painful to do. My mother-in-law does my ironing. My husband does whatever he can.
Looking at the above, I realise how lucky I am to have such help and I am so grateful to my family.
I also enjoy my life - I love my husband and children and they love me and so I am happy.
However, I do not consider I have a full life - certainly not like before.
I miss that and still feel a bit guilty that all my friends work and I don't.
So, am interested to hear from women still working and how they can manage that, particularly if they have a young family
I think I am a realist too. I don't mean hugs and all that malarky, I would just like to hear some good news to balance it up. I don't know how long I am going to live - nobody does, but it would be good to hear from other people - particularly the new ones we are not familiar with, their success stories. I also would like to hear from people 'fully' living with secondaries, I know I'm not
I don't see it as brightsiding (is that a bad thing?), I see it as balance
Please no good news forum..I'm fed up with 'brightsiding'...I sometimes feel I'm the token 'realist', for which read 'letting the side down pessimist'. I know people can live ages with mets. I know people who die very quickly...I hold both of these possibilities in my hands...there are plenty of places on the forum for people to talk about good news as well as bad news.
For the record I think me surviving nearly 5 and a half years with triple negative breast cancer which was misdiagnosed and had spread to 23 lymph nodes at primary diagnosis is pretty good in the scheme of things. I also think the fact my cancer has this far only spread into multiple sites in my chest wall and neck and not yet confirmed in distant sites is good news. Its less good news that I am on my last established treatment option...though I reckon showing that triple negative disease can be indolent and persistent and not just 'aggressive' as is the tendency to say is good news...But hey I don't expect to live for as long as I'd like. I've no idea whether I will live for some months or a couple more years but I don't think I'm going to be a 10 year living with mets wonder story.
I live with the good news and the bad about myself (I'll never have a normal voice range again is something else which pretty much upsets me) and I get tired of having to separate them.
I just worry that the last two sub headings in the secondary breast cancer heading may be misconstrued i.e. End of life and Meet up's. Does this mean meet up's on the 'other side?'
Also it would be great if there were a positive heading - people who had survived for a period of time. Good news stories and such - jus to balance it up
Is there anybody there?
Just logged on and the categories make good sense to me.
I don't think there's a need to move any of the old threads...just to remind people that they're in living with sceondaries sub heading.
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
as far as I am concerned it is fine it will encourage me to be more active and get posting.
I created the following categories based on your feedback.
# Living with secondary breast cancer
* Living with secondary breast cancer
* Treatments and medical issues
* Talking with others about secondary cancer
* End of life
Again these are flexbile.
I moved all the topics of the previous forum:
# Living with secondary breast cancer
under the category
# Living with secondary breast cancer
* Living with secondary breast cancer
There are 1297 Topics and it is a giant task to move each topic to the relevant new categories as this can only be done manually.
Are you happy to start the new categories with no topic?
(Unless we can get a few volunteers to help moving topics...)
they are OK with me and of course they can always be changed...you could call it treatments and medical issues...
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.
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.'
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
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).
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
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.
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!!!!
Maybe we need a 'really useful stuff' kind of heading too, as too much of this important info can get lost in the ether after a while.
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
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
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.
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.