Hi Jackson,
I think the thinking behind it could be… if we are going to chain ourselves naked outside no 10 they don’t need to be pre warned! Maybe?
I am useless on computers so I understand your concerns. I have just tried to sign up it was 2 clicks one on Fiona’s name which took me to her profile and the second on the web address so I have signed up. I think.
I am off for treatment but will be back on here around 4 ish. I have no intentions of leaving BCC.
Hope everyone has a productive day even if you are only sleeping off the effects of treatment.
Love Debsxxx
As I won’t be chaining myself to railings, I don’t think I need sign up to a private forum. I am happy to discuss issues raised on this thread on this forum. Am I missing the point?
Jenny
I think I too must be missing the point. I would have thought the very openness of this thread/forum might actually help right some of the misconceptions about secondary bc???
Kay
Hi Jenny, Kay and Jackson…I think it’s probably easier to discuss off forum…especially if discussing other charities, companies…not in a ranty way at all but perhaps questionning…and I guess that would put BCC in a difficult position?
It’s a really user friendly forum…I’m finding it so, I have chemo brain too and I’m no computer geek.
I also won’t be chaining myself to railings…might abseil though. 
I also think some of us, many who’ve since died have been trying for years to change, challange perceptions here without many results and it might be worth trying a new approach.
I don’t think anyone wants to leave BCC, but it has limitations.
If we want to put together documents and have these available for review the BCC policies won’t allow us to do this. Similarly if we want to create a library of documents from the web that is hard here.
Don’t want to alienate anyone and we all have a different approach to dealing with the disease and our diagnosis. There is no right answer!
If we want to make a difference in the Media October is a good time to do it and it gives us just 4 months, less as in reality copy is finalised well in advance and October magazines will be in the newsagents late September.
Will post updates on this thread!
Hello all. It’s been really interesting reading your posts. Much of what you say strikes a chord with primary as well as secondary patients.
I have a couple of suggestions:
1.What comes across really strongly is frustration that there is no independent, radical breast cancer advocacy group in the UK. The good news is there is. We are called ICPV - Independent Cancer Patients’ Voice. It’s early days but we have a lot of interest from researchers and medical professionals, including those involved in research into metastatic breast cancer. Some of us have done Project Lead training with the National Breast Cancer Coalition and one of the things they teach us is to work with scientists to promote research into the questions breast cancer patients want answered. I think we are pushing at an open door. It seems to me that some of you are very motivated to form your own advocacy group for secondary breast cancer. If you do, ICPV would be very interested in collaborating with you to promote research into metastatic disease.
We have met both Breast Cancer Care and Breakthrough to tell them about us and both organisations have been very receptive about exploring how we can work collaboratively with them, while remaining independent.
I’m never sure whether I’m going to get moderated if I post a website address so I’ll play it safe and say if you do a UK search in Google for Independent Cancer Patients Voice, our website should pop up. And you can email us from there.
- If you want to create your own discussion group, you could try Google Groups. ICPV has got one. It has a security feature that enables you to ensure members join by invitation only, therefore it is completely private. As well as having discussions, you can share information by uploading files, and linking to research papers on the internet. If anyone wants to set one up, PM me and I can send you more details.
ICPV is not the first independent patient advocacy group in the UK. There are others I know about - Breast Cancer UK and their No More Breast Cancer Campaign, the Scottish Breast Cancer Campaign, IBC UK campaigning for research into Inflammatory Breast Cancer and I’m sure there are plenty of local advocacy groups like the Breast Cancer Unit Support Trust (Google bust bristol)It started off in 1991 as a fundraising organisation supporting its local breast unit, and has extended its remit to become a key stakeholder working with PCTs, NHS Trusts, Clinicians and Local Authority Overview and Scrutiny Committees on a Review of the future of local Breast Care Services.
My experience is that when you get together with like minded people to change things for the better, you realise how talented people are in so many different ways. That really helps to motivate everyone and makes a difference.
Thanks for that Daphne, will have a look now
Leadie
For the first time in ages, I just lost one of my essay posts again!
I can’t possibly repeat it but let’s just say, I won’t leave BCC, it’s been a great help and continues to be for me.
I felt as if I was risking it with some of my comments re institutions, charities etc plus felt that we were just bouncing stuff around. Plenty of voices but none of us really being heard.
Independent discussion outside the ‘pink arena’ is a good thing. We are all individuals with our own opinions. Do we always have to stay under the umbrella that charities such as BCC kindly provide.
Plus, if we form a netwrk or team, there will be continuity to our voices. As individuals we will eventually fail but as a team, our voices will still be heard.
Now, I’ve noticed there’s another post so I’ll shut up now. Just to say, I hope that we would have BCC support- they have plenty to do and they do a great job!
Anne xx
PS Belinda I think you were spot on! agree with it totally
Ok, thanks for your replies, I do understand now why there is a need to communicate elsewhere. So much information has been given on this thread leading to other organisations etc which I would love to follow up - if only I wasn’t so unbelieveable tired. Like the title of this thread, I am indeed sad & frustrated at this disease. I am frustrated that I don’t have the energy to read all these links at the moment but I hope I will be able to soon. Well done to all of you taking action now.
P.S. Debs, I think my family would like some advance warning if I was going to be chained naked anywhere so they could leave the country first.
Hi Daphne
That sounds really interesting. Thank you! It will take some time to digest it all.
My only concern is that we are advanced cancer patients who are facing very uncertain (or not) futures. Our voices are here now and it is important they don’t get lost or our points lost on a big list of priorities. It’s a very sensitive issue. In our case staying small may be better, I don’t know.
I’m sure collboration is a good thing however, especially when it comes to trying to address research issues. I’m sure the others will have opinions too. Media issues specific to advanced BC could easily get lost when discussed within a larger audience and these issues are very important to some of us.
There’s a few of us on here with various talents and that’s important for a team but everyone should still be able to get their voice heard. I think my waffling drowns every one out at times!
It’s really great to know that there is so much happening and thanks again for bringing it to us here.
Anne
Thanks Anne, I agree secondaries patients have to prioritise the stuff that’s really important and I understand that there’s a very good case for staying small. Also it’s important to balance what you try to do with members’ health.
My thoughts are if you get your group going and agree the priorities, that’s the time to look at whether other organisations like ICPV can help you achieve specific goals faster than if you did it on your own.
We’re not going to try to interfere with what you want to do. Just call on us as and when you feel it might help and we can discuss.
Thanks Daphne!
Over to the others for comment now. I’ll shut up!
Best wishes
Anne
Thanks Daphne for great update on your latest campaigning.
I don’t in any sense see my self as ‘belonging to’ BCC. They just happen to run these forums which on balance I think are the best UK breast cancer forums.
I’ve done this and that with BCC and Breakthrough over the last 5 years and expect health willing I’ll do this and that again. For example I was due to run a seminar for staff at BCC on the perils of the ‘think positive’ agenda…they were really pleased I offered this. Sadly couldn’t do it because since cancer took my old speaking voice I have lost confidence in speaking publicly.
For me ‘coping with’ living with cancer is helped by engaging my brain as well as my emotions. And I’ll do that wherever it looks interesting but I don’t want to join any groups.
Jane
Hi Daphne! Hope you are well, it was lovely to log in and see your name here.
So much interesting stuff to read through and so many ideas. Fresh thinking…it’s great.
Belinda…x
I think ICPV looks really interesting…and up and running… so I reckon that any ‘group’ coming out of this thread should collaborate closely.
Also I still think that as individuals we can each do our ‘bit’ within our own skills and experience…letter writing, lobbying journalists etc. Together yes we are strong, but only if we know what we are together on.
Jane
PRIMA/BREAKTHROUGH COMPETITION
I have received a response from Sophie at Breakthrough. This is it:
Thank you for your e-mail regarding Prima Magazine’s Woman of Courage Awards. The opinions of our supporters are very important to us, and I want to take this opportunity to explain the award in a bit more detail and answer some of your concerns.
Prima’s Woman of Courage Awards has been running for several years and is a Prima initiative, not a Breakthrough-run award. We have a long-standing partnership with Prima and benefit from this in many ways, primarily through features, articles and interviews with people going through breast cancer which help raise awareness and provide information and advice for women affected by the disease. Prima also helps to promote our fundraising activities, which many of their readers take part in and raise a lot of money for. We are extremely grateful for their continued support and hope that it will continue for many years to come.
The concept of one woman being more courageous than another is not the purpose of the awards, which aim simply to acknowledge the different experiences of women going through breast cancer. We appreciate that not all women would want to be nominated or involved but we also know that those women who have been honoured with an award in the past have been thrilled to be a part of it. For many supporters, reading about the experiences and stories of women who have, or have had, breast cancer can be incredibly inspirational and educational.
At Breakthrough, we take the views and opinions of our supporters very seriously and I would like to apologise for any offense caused by us including the Woman of Courage Awards on our website. I want to let you know that your letter has been forwarded to Prima and we have already spoken to them about making changes to this concept next year, so I can assure you that both Breakthrough and Prima Magazine are taking your concerns seriously and acting on them.
Once again, I am very sorry for any distress caused by this award and, although many women enjoy entering and being nominated for awards such as these, I do acknowledge your concerns.
I do hope you will continue to support Breakthrough and the work we do to. Please do not hesitate to contact me again if you have further concerns.
Best wishes,
Sophie
Sophie Collins
Fundraising PR Manager
Interesting…needs them to go one step further and say they’re not going to be involved?
I feel very guilty…having been the person who drew this to everyone’s attention do you know I never got round to complaining myself…
Jane
Dear Jane RA, Don’t feel guilty, you have enough on your plate and it was great that you spurred others on!!
Best wishes Leadie
I have replied to her and posted my response on the other place.
You still have time to add a few lines to the growing chorus of disapproval Jane.
Bumping it back up in case people want to check out fionam’s profile and join us on her site
J xx