I have looked at the ‘Searchlight on ‘secondary’ breast cancer’ link and can’t find anything about what is happening on 13 October 2013. Most of the Information has been there a while, and one document is the Spotlight Annual Review 2011. There doesn’t seem to be an annual review for 2012, let alone 2013.
As the moderators obviously read what is on here it would be really great to know what is happening now that we are half way through September, and less than a month away from the 13th. Please tell me you are doing something? Breast Cancer Care seems to be the only UK charity which takes any interest in Metastatic Breast Cancer. Other than having incurable cancer (and therefore not really counting as Pink), have we as a community done something so terribly wrong that NO ONE will take an interest? Why are those who have curable cancer the ones that get the support, publicity, funding, research?
Vicki xxx
Dear StickiVicki
Final decisions are still being discussed with regards to activity on and around SBCAD this October. As soon as we are informed as to what these will be we will share with everyone.
Berst wishes
Anna
I completely understand why pink washing is used. It brings in huge amounts of money. But you would hope a day especially dedicated towards metastatic breast cancer would at least try to tell it how it is. It’s only one day, normal service could be resumed afterwards.
BCC, WE NEED YOUR RESPONSE!
“It’s only one day, normal service could be resumed afterwards” Yes, I know what you mean 
but the whole point is that we have to live with metastatic breast cancer EVERY DAY.
Thank you, Anna. A good start, I’m sure, but I choose not to use social media, and “Thunderclap” is not notable enough for a Wikipedia entry.
What about newspapers? radio?? TV ads??? - or are BCC’s inputs to these media embargoed until 13th?
Hi Tawny, I wasn’t part of it but I remember the 2010 event and how excited people were about it.
It’s such a shame. x
This all sounds rather like something has been chucked together at the last moment. After all BCC has been advertising its main campaign for weeks now.
Two things:
1. 13 October is on a Sunday this year which means that the opportunity to get something out into the press on the day is limited by …
- The fact that the Press, and especially the Sunday papers will have been working on, and probably finalised their BC stories for feature articles and supplement Magazines, for quite a while now. The ideal on a Sunday would be a feature in a Sunday supplement but they may already have been printed because they are planned a long time ahead.
Since MBC isn’t a breaking news item and therefore reporters will not be rushing to find out about it, shouldn’t all of this have been done a lot earlier? It feels more as though you have done things for the ‘important’ and Pink side of breast cancer and your big fundraiser of the year and as an afterthought have turned your attention to something that few people actually have any awareness for.
I guess BCC hope I will shut up and go away, but over the years it has occurred to me that no one is really interested in helping and supporting us. Nothing is offered to us, we have to try and hunt it down. No one wants to show that we are the real face of breast cancer; the reality of what this disease really means. We truly are secondary in the thoughts of the Pink breast cancer community and that is actually quite heartbreaking, especially for someone like me who lives alone. There is nothing in the UK that makes me feel ‘at home’ and valued by breast cancer charities and communities so most of my connections have been with organisations in America, and that is sad.
<li-spoiler> </li-spoiler>
Guess which comment is mine!?!:womantongue:
I’ve been teasing this thread with interest and like everyone else am dismayed by BCC’s lack of pro-activity in raising awareness of metastatic breast cancer.
I think their latest response is a clear indication that BCC have just read these threads and cobbled together some words to try to placate the forum members who have raised concerns.
As Vicki has mentioned to get anything in the features section of the press, unless it is a major news item, normally takes weeks of prior planning to ‘sell’ in the story to journalists and the lead times are even longer for magazines. I have a marketing background so am acutely aware of how long it takes to plan an effective media campaign and BCC’s response just smacks of lastminuteitis!
Sadly I think the only way that metastatic breast cancer will ever get the focus it deserves is if a specific MBC charity is set up to raise awareness of the realities of this killer disease and campaign better on our behalf. Until then we secondaries will be confined to being secondary!!
Damn predictive texts ‘reading’ not ‘teasing’ !!
Hi all, I’ve been using the mets forum since 2004. Between 2004-2006 a large group of us tried to raise the profile of stage 4. A few years after this some went to Westminster, with BCC. Others broke away, we started our own groups, had meet ups. One member started bcpals. There were new meet ups, a late friend’s husband put a site together.
Raising the profile of stage 4 has always been a battle. So many articulate, bright, funny women have tried to be heard and to be honest none have ever got very far. Nearly everyone I knew from the beginning is dead. I feel sad when I recognise the frustrations posted here. There’s so much more that could be done. I know my late friends would be posting and protesting here just like so many of you. I wish I could end this on a note of positivity. All the money that friends and family members have donated in memory of past forum members. Why does Stage 4 still get so little attention? My friends were past caring about body awareness, just like so many of us here they just wanted to live longer to see their children grow up.
I see so many newly diagnosed here now taking up where dead friends and now very ill friends and me (tired and jaded by it all) left off. I know they would be cheering you on…I’ll wave my stick (blasted bone mets) perhaps mostly from the sidelines. But open to any new ideas and where I could be useful. It’s a hard nut to crack.
x
Hi Julesie a MBC charity would be marvellous. Perhaps it’s the only way…does anyone have any background, know the ropes?
I have long thought about a Mets Charity and I might have a word with the fundraiser at the college where I work as she might have some ideas.
Don’t know what the paperwork would be like … you know Governments.
Hi Belinda
How very sad that you and many late friends have had such frustrating experiences It’s hardly surprising that you are jaded by it all. Thankfully, I’m feeling well at the moment and have the time to look into this further. Would be great to hear if anyone has any direct experience of running a charity.
I have been on a committee before. We would need to try and find some non-metsters to have some continuity, sadly, but I think it should be mainly run for and by those with Mets. The trouble is getting people to volunteer to do this.
Are any of you on Skype?
Vicki xxx
Hi Vicki. i don’t really use Skype but will PM you.
Hi Vercors
Looks great. I’d be happy to support and help in any way I can.
Hi Vicki, my pc is ancient and I’ve been putting off getting another so perhaps I should but can’t skype at the mo.
Hi Vercors, it looks really good…how can we help? Would it help to pm you?
Know what you mean about an old PC. I had no choice … left my computer on and went downstairs to get the washing out of the machine about a year ago and when I came back … blank screen. Unfortunately it fried the big project I had live on screen, but I was able to get back other information and now have an external drive to load things on to.
I use Skype occasionally with friends in the US and Canada and a friend who is always buzzing around with her husband working in Saudi and children etc. Not too good with it though!
Vicki xxx