Just found this thread. So interesting - stirring up lots of feelings and thoughts but pausing to think of Kate and her family and friends at her funeral today. Sorry I can’t be there but my thoughts are with her. Just bought a beautiful jacket and skirt in blue actually today in a charity shop for no reason other than I liked it. I think Kate would have approved.
I will be back on this once I’ve got my thoughts organised!
Take care all xxx
I have just been to Kate’s funeral. It was very moving and a fitting tribute to Kate. I had alot of purple on as requested. The chapel was full to bursting with so many of us saying goodbye to Kate today.
Rachy xxx
Thanks Rachy
Thanks for letting us know Rachy.
Lovely photo Debs - very fitting x
I’m not sure what to say other than thank you for letting us know. Been wearing a purple top today- been thinking of Kate and her family today x
yes …on my mind today too
thank you Anne and Belinda for your replies …very suportive…
interesting ideas on here …too tired tonight to respond ( have been away for work for 3 days ) … and treatment tomorrow … so aay to my bed but will be back! angry sounds good! jaynex
I too have been thinking of Kate today - it was only about nine weeks ago that I met her at the Bristol meet-up, still can’t believe she’s gone really …
Yes, angry sounds good, don’t think I’ve ever expressed so much anger as I have in the past five months since dx.
Have a good night’s sleep Jayne
Lesley xx
I’m so very pleased that I started this thread, as it seems to have been able to let quite a few people ‘vent’ which in my eyes can only be a good thing.
As a relatively newbie to secondaries (DX with primary July 2007, DX with secondaries Sept 2007) I have found this section of the forums extremely comforting and supportive in my time of need (so to speak)
In view of us being ‘bitter’ I don’t think we are - I agree with Belinda = ‘fiesty’ is a more positive term!! I have no idea of where to start on a capaign for us, but am more than happy to join in once someone with a less fuddled-brain than me has begun…
In terms of ribbons, I think that black and white always looks smart, so why not have a pinstripe one? Move totally away from pink? That way, it stays totally ‘gender-free’? Then, if it took off well, we could be seeing board meetings etc with our ties/hankerchiefs etc being more prominent. Without sounding too offensive, I know a lot of my male friends wouldn’t wear a pink tie (no matter how much they wanted to support a cause) but a pinstripe one with a subtle logo on it?..no problem.
It’s early morning and I haven’t had my caffiene yet (damn Bondronat) so apologies if this post is a little scatty!
J xx
(My thoughts are with Kate’s family and friends)
xxxxxxxx
I too have dreams of doing something radical, then I think “sh1t, I’ll be dead before we get anything off the ground”. We need Joanna Lumley really - isn’t she doing a great job for the Ghurkas? Should we meet? Should we decide on what exactly we want to happen? Can we get somebody from the research teams to talk to us about what are the delays and stumbling blocks to providing treatment? What is it that we want to achieve?
Deirdre
Hi everyone…I did wonder if BCC might let us use a secondaries chat session to discuss ideas? I don’t want to stop anyone seeking help or support but perhaps we could have 20-30 mins?
Hi everyone.
was thinking about kate yesterday-she really touched so many lives.
have also been thinking about this thread and have resolved to stop spending so much of my retirement sleeping and reading bad novels. i am woefully ignorant of the state of bc research at the moment, and dierdre’s idea of asking for an update is a good one.
should we start by staring a new thread on what people with secondaries feel are the important issues, and also what people’s strenthgs are in contributing to any campaign? It would be good to get together, but we could get started on line.
Nicky
That is a good idea Belinda, I think our main concern is that until you have secondary breast cancer there is not the urgency. When diagnosed with primary we just want to get better and for lots of us once we do we move away. Then bang the uggers are back and we face the death penalty and for some it happens so quickly. Plus the treatments are so debilitating we can hardly get out of bed let alone campaign.
Thanks Poannie this is a really good thread it has got us all jumping up and down and shouting. Well maybe not a jump exactly.
Love Debsxxx
As Debs says, many secondary patients are just in no physical condition to campaign for long, so we do need someone to spearhead a campaign long-term. Joanna Lumley is doing a great job. Shame we can’t persuade someone like Jenni Murray to do the same for us (she spoke out against ‘brave’ analogies and the like on Newsnight the other week - I think she would be great).
And yes, BCC, we could have a special Live Chat session to cover campaign issues (we did it for talking with children so it can be arranged…)
Perhaps it is time BCC arranged another Secondary Task Force event, so that we can find out what has been achieved since the one held in Autumn 2007? The aim then was to arrange ‘key workers’ for all secondary patients, (which many of us didn’t see as a prime objective and, I don’t think this goal has been achieved).
So what do we see as our primary goal?
Jenny
Don’t know if anyone else listens to Radio 4’s lunchtime prog ‘You and Yours’ …(sorry I mentioned this programme before)…but I went on their website and they have a section where you can submit ideas for a programme subject. It’s a programme that covers a lot of consumer issues but also disability, health issues to. If it’s not removed this link is their main page. bbc.co.uk/radio4/youandyours/
x
What about a name Mrs Blue has said on bcpals we need to open a new thread and take action.
So what about ‘Action Breast Cancer’ doesn’t mean we have to run a marathon sometimes plugging in the laptop is enough action for me on a bad day.
Any suggestions?
Love Debsxxx
“Action Breast Cancer” is the bc arm of the Irish Cancer Society.
I’d prefer to see an agenda first and a name later 
Oh well what a shame I quite liked it!
Back to the drawing board.
I’m a bit wary of this thread…I’m not sure what the agenda is either.
Though connected I think there is a difference between the personal sadness we feel at a time when several forum members have recently died, and the more difficult process of thinking through what ‘we’ want in terms of campaigning. 12000 women are dying annually of breast cancer…we knew that already, we know that most of us writing now on the secondaries forum will be daed sooner rather than later…years before we should.
I know taht I a frustrated by the drippy, glossy, ‘nice’ intentions of the major breast cancer charities in the UK. I hate the way breast cancer is romanticised and the way that women who die are sanitised, canonised and glamorised…the pressure to be a dead hero or a valiant survivor pervades the culture of breast cancer…
I also know that in the charities there are pockets of good work going on…new research being launched by Breakthrough on triple negatives for example…I knw its a godo step forward for the future.
There is such more exciting campaigning and lobbying going on in the US (though a cure no nearer there than here.) Publications Like MAMM knock the socks off magazines like Vita and Amoena Life which seem to be the best the UK can manage.
Jennywren and I were at a focus group event at BCC last July/September…huge sums spent on consultants…indeed we got a nice little cash gift for our particpation… I think it was something to do with Cancer Voices. We had some great suggestions from our ‘secondary’ table…the ‘naughty’ table…but not sure where they’ve gone or what’s happening. The secondary taskforce as Jenny says spent a lot of time deciding that getting a keyworker for secondary breats cancer patients was a priority. Many people don’t think it is, but now its BCC policy…It all feels like walking in treacle.
I did write to Jenni Murray before last Pink October about her taking up some of these issues, but never got a reply so maybe she’s not our Joanna Lumley (and breast cancer is more complicated than the Gurkas.) You and Yours Worth a shot.
But what is the agenda? What do we really and realistically want?
Jane
We could really do with a BCC chat slot…so much easier than typing our messages out.
My thoughts on what I would like to see…they may be quite different from anyone else’s …so just my random thoughts…
Well I guess I would like to see real recognition, real representation for all stage 4 women. Seems to be a lot of fundraising, a lot of support out there for breast cancer but since I’ve been diagnosed I’ve seen quite a sea change in how bc is portrayed in the media…I feel we as a group have become marginalised, completely lost in a sea of pink. Some feel they cannot speak their mind even here, share the distressing side, the sadness of living with our diagnosis…I often feel like this…I know some do speak out but I’ve seen, just recently, the collective wrath of others when someone dares to mention funding, website costs etc.
A while ago now a forum member used to post forthright, informed and honest posts…unfortunately being honest about living with stage 4 bc upset others, she was told by a few that she was depressing them and she was constantly being put into moderation…meaning any of her messages were vetted before they were posted here.
There is SO much I would love to say…but I won’t…Jane has mentioned the dead being sanitised and glamourised and this is something I’m seeing here more and more and I’m finding it all very distressing. I think there’s a huge amount of pressure to be brave, open, stoical but not too depressing…after all not all the readers here, on this forum, will have secondaries. Having had a while to reflect I now wonder if a Memorium page might add to the pressure some of us feel about how we die, how we live with our diagnosis. I don’t want to scare anyone, I really, really don’t but I know so many women with mets who will not post here as it’s too public, too open. I often feel I must walk on eggshells. I’m not blaming BCC for this (although I know some of us mentioned a private forum would be nice) but it adds to the pressure not to depress others especially those with primaries. I know I won’t be sharing my last days, months on the world wide web, I’m too private a person…anyone can read these posts…my family, friends and people I’ve never met, complete strangers.
I feel we’ve become a marginalised group even within the rest of the breast cancer community. We need to be recognised as the very large percentage of women who once diagnosed go on to develop secondaries…or who are very often diagnosed with stage 4 from the very beginning. All the info out there is still very misleading it’s not necessarily the number of nodes, clear nodes, regular mammograms, being teetotal or not, breast feeding or not…green tea…etc and it’s not just a small few that unfortunately go on to develop secondaries it’s a huge number of us. Medical websites are still quoting the 50% stat on developing secondaries and before it was hidden, moved or removed the 50% stat was on this website. We are not the small group who failed (and so many feel they somehow failed) or let the side down. And we didn’t develop mets because we didn’t follow Jane Plant or have positive thoughts. The latest stats are so misleading…some but not all of us are living longer, especially if we are er+ and can buy time on hormonals…I’m a 5 year survivor stat…dying of breast cancer.
So I guess I’m looking for much more recognition of us being a large part of the breast cancer community. More co-ordinated and universal support for stage 4. We shouldn’t need to find out about Disability Allowance for example through a chance read of these forums. We shouldn’t feel the need to apologise for ‘ranting’ or ‘moaning’ when we post about a treatment failing or yet another obstacle. (I’ve read so many posts here that end with apologies for moaning) I think a higher profile, true recognition, would, over time, bring new research, trials and better palliative care. It would be wonderful to bring an end to different trusts offering different (cheaper) bisphosphonates and to end struggles to get on trials and travelling or having to campaign for a drug which others in a different part of the UK have access to.
Ironic that those who need the most support are at the moment (I think) given the least. Apologies for such a long post and these are only my VERY rambling thoughts…you may all have very different ideas and I go with the majority.
So much I agree with what you have said Belinda. I think maybe the focus I’m intested in is thinking about how we could impact on the next pink October…both in serious ways and more anarchic ones. I’d love to see an investiagtive journalist doing a really good TV programme on pink culture…really unpicking it and showing how damaging it is in terms of making progress on a cure for breast cancer. I’d aso like some really visible direct action event…not pink tea parties or arobics in Hyde Park but somethning angrier.
I’d like to sae a sea change in breast cancer charities. Lymphoedema is Breathrough’s key issue this year and they’re sending off people to Australia to find out about manual lymphatic drainage. Now as it happens I have mightily bad lymphoedema but I am fascinated by the way that suddenly this has become ‘the’ campaigning issue. Nice and safe, nice and cosmetic but its something bigger I’m looking out for. Lymphoedema isn’t going to kill me…cancer will.
Jane