Breast Cancer Campaign is a charity I have a lot of time for.
They recently (last year) published a gap analysis of breast cancer treatment - identifying areas where more research and funding is required.
It is an essential read I think.
You can find it by going to breastcancercampaignDOTcom and then navigating to What We Do and then Our Achievements where it is downloadable in pdf form.
Hi Fiona
I am sorry that I have had to remove your link to this site as it is against our t’s and c’s of not allowing links to non public sites. Could I suggest that you use the private messaging to share this information?
Best wishes
Annabel
Ooh being a bit of an idiot here, I can’t get at nor can I get anywhere sensible with address for Breastcancercampaign. OOps just worked it out. it’s breastcancercampaigndotorg not dotcom.
Looks really useful- thanks a lot msmolly!!
Oops! Back to work x
Great ideas on this thread. Myself I’m a psychotherapist so not sure about useful skills here!! [Can provide tissues at crucial points though!!!} But have lots of energy and want to get involved
Leadie
Hey leadie,
What a team of ladies!
A psychotherapist… no worries, I’m perfectly sensible, me, honest! Definitely need the tissues once in a while!
So, what do you think about the pink fluffy stuff and people with advanced BC? Can you think of anyway they could turn it around to make it seem more acceptable? Don’t have to answer now but your insight would be really interesting.
Anne
Right, def off this website, there’s work to be done…now!
Dear All, just read through some of the threads here and there are lots of ideas
Here are just some I picked out for discussion…
Cancer charities get large ammounts of money but yeild little in real terms…
Secondary cancer is not really supported
loathing of tickled pink and pink campaigns
Gay community drives their own agendas and dictate terms to the NHS
Advanced cancer and end of life issues
Setting up a radical national organisation for patient advocates
Recognition for stage 4 women and end of life issues
These are just a few of the issues raised on this one thread!!!
I love JaneRA’s idea of a radical national organization.
Comments please
Leadie
Hi Nicky,
Have sent you some email addresses that may be of some use. I will be off climbing mountains or would do the research myself.
Jenny
x
Thanks Fiona…I’ve just sent you a PM
leadie…yes I think that’s a very comprehensive list.
Do you all think we should have 2 or 3 main goals, aims…rather than try to spread ourselves too thinly?
For me these issues below would be key…but just my opinion so please feel free to disagree!
The way money is raised and how it’s spent…which I guess would also cover the pinkness, tickled pink.
Real recognition of stage 3 and 4 bc…more support, patient advocats, a louder voice, which would all hopefully lead to a good, universal standard of palliative care, availability of drugs etc.
Nicky yes October would be a good time…the magazines are usually a month ahead so Pink October articles are in the mags and on the stands for September.
Belinda…x
I can ask Ian to set up a website for us it would have to wait until the weekend. If that would help or can one of you do it. As you know it is far to advanced for me.
love Debsxxx
I agree there seem to be two main areas to consider, they being (loosely) Patient Advocates for advanced breast cancer and Pink October. Too many fine points will probably blur the issues at this stage.
Jenny
We don’t want to alienate anyone but ‘Think before you pink’ would be a good place to start. Not to put people off retail therapy we all need that, but it gets so tacky and only the retailers make a profit. With a very small percentage going to any b.c. charity.
Love Debsxxx
I’m still keen to push the research side to find out more about CRUKs stance on advanced cancer and palliative care. So, happy to tie in with Nicky and anyone else on this.
Also, I think it’s time everyone recognised the differences between types of breast cancer- this will definitely impact on treatment and possibly, resistance to treatment.
In an ideal world, I would like to see us put together a document entitled something like, Living with Stage IV BC- looking from the inside out.
Something that details
-how we view the role of the media and cancer charities in presenting a picture of us.
-how we as individuals with our own course of disease, differ from the ‘ideal’ that is presented,
-the issues that cause us concerns, families, working etc
-how we view what is done on our behalf i.e. fundraising and awareness of secondary BC
-whether we consider that the money bequeathed to cancer research charities is well spent. Is there enough being done for advanced cancer, for us ladies (and others) who live with cancer as a ‘chronic’ disease? Is there enough research going on to determine why treatments fail and to develop longer-lasting therapies, that have lower resistance issues?
The radical national organisation sounds good! But, I have a concern and that is, we each have to look after ourselves. We each have a health battle and we mustn’t take on anything that will one day make us look like martyrs to the cause. A network where we can each take a break as and when we need to from having to consider issues would be a good thing.
How about think beforeyou pink us UK, there is a think before you pink USA already. I don’t think i have alot to offer at this stage as i am back to square 1 secondaries wise,
Cathyx
As a follow on to Cathy’s post - it might be useful to look into BCAction’s website - the Think Before You Pink campaign looks interesting and appears to reflect some of the posts above.
ShelleyAnn
Well the platform is set up it may take a little while to learn how to drive it, people seem to be finding the address, please check my profile as I am not allowed to post it here.
Anyone who has signed up the forum works pretty much like here so if you would like to start a thread go for it!
Have set up two groups at the moment - one to cover research issues and the other media issues, these seem to be most peoples priorities.
Will dig out any relevant documents that have been mentioned and attach these.
thanks
Fiona
Anyone who doesn’t know…you might find the US site bcmets.org really interesting. Its the US site which Musa Meyer is involved with. The threads have a very different cultural flavour to UK stuff. I read regularly but don’t post or I’d be spending even longer on the cancer computer than I do already.
Jane
bcmets design has been revamped recently, and it is much easier to navigate than it used to be. I know the old format used to put some people off reading.
Jenny
Thanks Fiona…will have a look at those threads today.
I read but don’t post on bcmets…I envy their freedom of expression and self monitoring…it works…they’ve had some bust ups but it seems to bond them closer together…here when there have been heated debates, (not usually on the secondaries forum) a thread has been closed and the matter is left simmering on the back burner.
Bumping this back up to the top for Fionam.
Please click on her name to go to her profile, where she has a link to the website she has created for us to discuss things in more depth in a more private arena…
Thanks
J xx
I’m sorry but I don’t understand why you feel the need for more privacy. I thought the aim was to go public and be heard. Is there something I’m missing? Personally, I think it is a real shame to move away from this forum, you could potentially miss a lot of people. Also, for those of us who haven’t used other sites before, it’s just one more thing to get to grips with while struggling with chemo brain, symtoms or side effects from drugs etc.
On the media/Pink October side, the Mail on Sunday You magazine always covers the whole breast cancer subject incredible badly. One year they had photos of “celebraties” showing glimpes of their bras!!! What on earth was the point of that?? I’d love to challenge them to do something much better.
The trouble is that so many times I have read articles in magazine or papers or seen pieces on television where the reporters get the facts wrong. The glaring mistakes are so obvious to anyone with any knowledge of this disease but not to “Joe public”, who will, yet again, be fed incorrect information. I have no idea how this can be corrected.