have been following this thread with interest, I had never thought about the pink thing before being diagnosed, even though my mum had bc 9 yrs ago. I agree with yr comments and I’d be more than happy to get involved. Iwas dx with primary bc on 3rd March.
love debs xxxxx
Excuse me if I seem to be butting in. I do not have a diagnosis of bc, but my mother died from it and I have twice been through the ‘triple test’ due to various odd symptoms. I’m also an acquaintance (friend?) of one of the regular posters on this thread, and knew dear Kate. Due to my mother’s bc (and subsequent secondaries) and my role as a hospice chaplain I have had a lot of contact with Breakthrough (always my chosen bc charity, as they seemed to have better priorities than the others). I really think they might be your (our?) best way forward. They hang their reputation on research, and research is what’s needed.
That’s all.
Sass xx
I also have been following this thread and am in complete support of whatever is decided - I’m still relatively new to all of this so don’t know much about Breakthrough, will have a better look at their webiste later today
Lesley x
I agree with all that has been said. I’m up for whatever is deemed the most appropriate. I do think it would be good if we were able to dispel a few of the myths about living with this disease which may help both the general public and those living with this disease. I remember feeling a bit like a leper at a younger women’s forum in Jan 08 (a month before secondaries were diagnosed)having mentioned I’d had a reccurrance on my mastectomy scar and having comments such as " I didn’t know it could come back on the scar" - so I dread to think the response had my secondaries been diagnosed - weird to think I must have the secondaries then as only diagnosed weeks later. What difference a day can make and yet no symptoms!
Although I think I always felt the cancer would come back at no point was I explained about secondaries and I felt encouraged to come of tamoxifen after just 2 years to try for a baby and although I’ll never know if that contributed to my secondaries coming when they did I wish now that I had at least gone with tamoxifen for the whole 5 years but hindsight is not very helpful!
I wish in a way in my 4 year “remission period” I wish I’d lived a bit more rather than trying so hard to eat really healthily,allowed myself to be controlled by my ex who seemed to want me just to sit in a chair as every move would mean I was “overdoing it”,looking tired and bringing on the cancer again! I’m now making the most of things as best I can on low income but know I could be stopped in my tracks at any moment but I really am enjoying life for the first time in years and feel free of the burden of responsibility that I was somehow to blame for this illness when I feel that some day perhaps there may be link somehow in my father getting and dying of prostate cancer in his early 50s despite being extremely fit and healthy.
I also think it would be great if we can work together with primary sufferers such as leadie who seem keen to get involved.
Don’t write us off just because we have secondaries - I actually truly feel healthier and look healthier than I have in years even though the scan in a fortnight may tell a different story.
I’m not brave but I am determined. I keep strong to distance myself from what I may have to face and I will face it when it comes but not yet!
Hi All,
I have just picked up on this thread and have to admit I am far to lazy to read through all the posts!!!
Whatever your planning count me in!!!
Regards Bikinggirl
I have a few ideas which I would like to propose.
Feel free to shoot them down - but if this isn’t destined to be just a talking shop then we need to get cracking and keep the momentum moving forward.
STEP 1)Move this topic into a more public space on this forum - it is a bit tucked away here. We want more recruits.
STEP 2)This forum is not a suitable environment to use for communication - far too public. I recommend that we start a private Facebook group or Yahoo group as a base for ourselves.
STEP 3) We take stock of the varied talents and skills of the group. We each bring with us an enormous range of abilities and contacts that can be harnessed.
STEP 4) We begin to identify what we want. We need to get away from the abstract of “pink is crap” to pinning down a specific goal and strategy to achieve it. I personally think putting an end to this wretched Breakthrough/Prima competition is a very good place to start.
Over to someone else …
Having a think about how we kick this off, agree with MsMolly’s comments above, re a suitable forum is the platform you use an option Bikinggirl?
Can we declare any skills/experience we bring to this? My background is in accountancy and strategy.
It might be useful to have some sessions round the country to get input from anyone who wants to contribute, it will also turn up some good people to have involved
I thought:
SW
SE
Midlands
East Anglia
NE
NW
Scotland
We need a few moderators used to running market research focus groups, I have a few names in mind that I can ask to volunteer but does anyone else knows of anyone.
We can then set up a task force and possibly some sub streams underneath, obviously Media and research need totally different approaches.
Does this work? If so does anyone want to pick up an area to organise a meet? I can cover Midlands.
If I am getting ahead of myself tell me to butt out!
Fiona
May I suggest Wales as well being in South Wales!!
I’m not sure about moving away from here to a private group as then it becomes a bit exclusive perhaps whereas on here as many people on the site as are interested can come on board and remembering that new people are diagnosed and come on to the site daily.
What exactly is our agenda? For me I’d like to know what has been found out in the research in the last few years and why Cancer research isn’t funding any research into advanced disease (if I’ve got that right - think someone said that on here) but it would be more to tell it like it is living with a terminal illness and to help people understand what we go through every day and to get more support on this. I feel the lack of a BCN support like I had during my primary diagnosis is a big issue. I know of several outlets I can ring but feel I have to do it all and would be good to have someone checking up on me. I get private treatment but feel more isolated as I don’t go to the hospital as much as I did when I was on the NHS which has its positives and negatives.
I don’t know how much skill or experience I can bring as a piano teacher but have 6 years of "experience of having breast cancer which I’ve now had 3 times and experience of both NHS and private treatment experience and having my marriage fail under the pressure of the illness.
It may be difficult for ladies with secondaries to get to meetings if there were many of them and to be able to plan ahead. It may be easier to do things over the internet to some degree with sporadic meetings.
It’s also hard to have energy left when so much of your energy is taken up with coping with this disease and going through treatments.
I think it is unworkable to run any kind of protest from an open access forum. I also think BCC might have something to say via the moderators - they may not want to be seen as complicit.
The private group would not be elitist - it is open to all women who want to participate. It just stops every Tom Dick and Harry on the internet being able to read what we are up to.
Probably does need a Facebook group or something…though personally I hate Facebook (is it an age thing!?)
I’m a loner these days having sat on one too many committees doing this and that over the years. But I can write stuff quickly and will continue to use my blog to air ideas…
Don’t have high expectations of change but feel really good to see so much enthusiasm.
If someone organises a good bit of old fashioned activism (lesbians abseiling in the House of Lords kindof stuff) then would love to be involved (ah…perhaps not bseiling…)
Jane
Hi…just had 2 days of dashing about and have read the latest posts but I will read them again thoroughly later…just wanted to say count me in…a private group would be ok with me…I’ll really digest these new posts tomorrow morning…with a cuppa and toast. x PS never abseiled but willing to try. 
Phew! I’m just about keeping up! Keep counting me in.
My background is in research so it would be good to find out whether we should be making a case on behalf of all advanced bc (and others) in terms of ensuring that they remain on the research agenda, alongside research into palliative care.
Also, research into different types of BC and metastases. Jane is probably very up-to-date on triple negative, but what about research into lobular and inflammatory advanced disease, each with their peculiarities. There is a tendency for others outside to imagine that it’s one treatment fits all and Jo public isn’t aware that we are not talking about just one disease here. A huge number of women are affected by BC, so it follows that if 10% of those ladies fall into subgroups, that represents a significant number of women whose disease is poorly understood. I am sure that Breakthrough have their fingers on the pulse here but maybe it’s time to review. We should review the NICE guidelines also so that when they are next reviewed (not for several years) there will be notes regarding what we consider their deficiencies to be.
Re Facebook, eek! But I may be able to manage it!
Like Jane, I’m not sure what we (can)hope to achieve but it’s pretty obvious we all feel a need to plump up the cushions, straighten the pictures and give the Breast Cancer Cafe a good old spring clean. Maybe we just need to be heard for who we are and not just given a pat on the head once in a while.
I’m well impressed with all of this.
I think if we are heard that is a good start. By being heard we will achieve if only to change peoples views.
Re abseiling not good for those of us with bone mets.
Love Debsxxx
Debs… I was thinking of abseiling down on velvet swathes. 
I’d like to be included too.
I agree with Jane, hate facebook, but recognise the need for more privacy. Also, i’m not sure that I could bring any particular skills to the group (i am a qualified secretary) but the greater the numbers, the bigger the voice.
Linda
(I’m so glad I started this thread)
Count me in - not sure what I can do, but want to do something. Even if it’s just waving a flag and shouting a lot.
I am a face book virgin, but would be willing to give it a go. Although it would be good to meet up, i think logistically it would be a nightmare, and meeting virtually is much more manageable. There seems to be 2 areas that are being consistently identified
-
What is the current state of research into all kinds of secondary bc, including drug trials and psychological/ support needs, and what are the gaps?
-
An identified need to present the real experiences of people with bc, focusing on october as an ideal time to do this.
Could somebody volunteer to set up a face book group and tell us very simply how to access it.
I will start lookng at research- would a precis of the NICE guidelines be useful to people? Would anybody else like to start trawling the internet?
Could we use the various forums to ask people about their experiences at specific times in their journeys and then use this as the basis for some articles/ proposals to give to the cancer charities and also media?
this is just an idea. i am not trying to organise everybody, but we need to get started on something concrete. please feel free to to disagree!
Nicky
Just popped on! Nicky, you organise girl!
I’m still working (not for long) plus I’m a patient rep on something else, so am struggling a bit time-wise, So it would be great if you could precis the NICE guidelines to make sure I’m not banging on about something that is pwerfectly fine(I know they only came out last/this? year but we should try and get a good understanding of them and the gaps in them- if it doesn’t help us, it may help BCC when they have to act as stakeholders on the next lot of guidelines to have our views upfront).
I’d happily join up with you to review the state of BC research, from our point of view. It would be very interesting to do it to be honest.
Anne
Hi I have recently been diagnosed with secondaries and have been very surprised by the differing information and options available between my primary diagnosis and now. I have always been one to find out as much information as possible to inform my discussions with the medics and i have really struggled to find current research into stage IV disease.
I would be keen to get involved in whatever capacity I can, my background is practice quality and audit. I also have a facebook page and think i could find my way round setting up a private group. At first glance it looks like you need peoples email address to do this.
Let me know if you want me to kick this off.
F
X
I have set up a network at to access it please check the web address on my profile as BCC have removed the link as it contravenes their policies.
Leave feedback as to whether this might give us a suitable online base, more privacy than facebook.
In order to retain that privacy at the moment members have to be approved, if you sign up just advise your BCC name and will clear it.
Thanks
Fiona