I thought I’d start a new thread, having had an idea this morning.
Would we like to see BCC set up a separate funding stream for secondary/metastatic bc? This could help fund research specifically for sbc/mbc - or for a project to improve collection of data on those with metastatic disease - or to increase the number of dedicted CNS (clinical nurse specialists) - or… ???
Thanks to those who posted some very kind remarks about my “pink/black candle” posting. I would be very happy for this to be made into a pin, maybe it could be sent free as a thankyou to anyone who donated at least £10 (say) to this sbc fund.
Over to you… what would we like to see in 2015 - I guess that if we don’t keep up the pressure on BCC, nothing will change.
HI Mrs Blue,
I think a sparate funding stream is a good idea. Would this involve a separate website for mbc and awareness or would this still be part on the whole BCC site as it is now?
I used to wonder why there were so many separate American mbc sites, but over the last year I can see why.
A separate site does seem reasonable, but then that goes against integration into the general bc area so I’m not sure.
I think BCC have already got something in place to collect data on the incidence of mbc, but funding for secondary breast care nurses is sorely needed.
For 2015 - Awareness Day - something that makes people more aware of mbc would be a start i.e. mbc front and centre for the whole day.
I’ll donate - I really want a candle pin!
Tink x
Hi,mrs blue,I think you avatar as a pin on sale next to all the pink fluff is a great idea,I’d love to see a pin on sale in shops to raise funds and awareness for SBC. Every charity does a pin but again we seem to be not important so no BC charities bother. My sister and I bought four after doing the look good feel better session to support them but I’d much rather be wearing one for SBC.
I would like to see the focus on the emotional strain and pressure SBC can cause to us and our family and friends. The BC robbed me of my eyelashes rubbish,what about BC robbed me of half my life,not seeing my children grow up,not seeing grandchildren,not retiring with my hubby .or in other words its killing me. Losing hair,eyelashes a boob doesn’t seem important when your dying. BC can have all that if I could get my life back.
Sorry having a rant as a bit down today. Yes,it’s the emotional strain of living with SBC .
My hospital even though it’s the northern centre for cancer doesn’t have a SBC nurse ! The one that left who runs the maggie centre said the post has been advertised for two years!!! With no takers!
Yes to all! I think the only way forward is separate funding for secondary BC.
I have never seen a secondary breast cancer nurse. I don’t think they exist in my hospital.
I too love the reasons behind your avatar mrsblue and would wear a pin. I never usually wear pins but this one has real meaning behind it.
Thanks folks! 
Emotional strain - yes indeed, me too, definitely.
But wasn’t this covered under “Hidden effects” this year? (I did start a thread - “Hidden effects - confusing or helpful?” - because once again it was a general focus on bc effects - and yes, I do know that primary bc has hidden effects too.)
Thanks again for interest in the possibility of a pink/black candle pin. I also have a real pink/black candle, home-made here, which I light when someone has sadly died from bc.
I think they’re great suggestions, mrsblue. I’d buy the candle pin and would direct any fundraising towards research specifically for SBC/MBC. I’m doing home-made Christmas crackers with my niece this year and have bought some little bits and pieces from charities, such as from the BCC shop, to put in them as gifts. The pink/black candle would be great - hopefully I can use them next year.
Mrsblue…Yes I’m totally in favour of a pin too and would gladly donate. Think its a great idea.
Helen…hope you and your sister are doing ok. Don’t worry about the rant. I had a bit of a meltdown yesterday too. Its allowed! ?
Love to all xxxx
Thanks again all!
When the BCC folks get around to looking at this thread (the dedicated “secondaries” person? - was Clare Kemsley but maybe she’s moved on?) I’d be grateful for a PM from someone at BCC who can tell me which company you use for producing your pin badges. I could then contact them and get a quote - how many? 100? more?? I may be able to help toward cost of commissioning a batch of pins…, after all, I have metastatic bc so I’m not concerned about saving my state pension for a long-term future.
I think more than 100, and it may be cheaper in the long run to get a bigger batch. I’ll make a donation towards the commissioning too. Just let us know what’s needed, financially or other help.
Mrs Blue, i think the pin/candle is a fantastic idea, i would definately buy one and am willing to help with any input etc that is needed.
Sbc/mbc needs sooo much more recognition, understanding, research and education!!!
And it looks like it is down to us ladies to make sure we get heard…grrr
hugs Janette x x
Hi Tinkerbelle, yes things seem quiet in this thread… but…
… I did receive PMs from people in BCC expressing their interest in contacting me. I gave them an email address but I’ve not had a reply yet, I thought I would wait till Pinktober has finished… it’s about all aspects of bc, I do recognise that.
… also, yes, it’s good to bump important (to the original poster! ) posts. I find it annoying that the “Latest posts” section only lists the 5 most recent posts in each subsection even if they are all on the same thread!! (often the “Bone mets” thread in Secondaries, I have bone mets myself but I prefer to post elsewhere as I have liver mets too).
Straw poll time!
Do you think people might be reluctant to buy a pin badge with black on it (whether the suggested candle, or another idea)? Would it be a risk that we who have SBC/MBC would want BCC to take, on our behalf?
Your thoughts, please…
Thanks girls … hope this thread gets posted to, or bumped, so people will see it and respond!
And its a yes to pink and black for me too!!
Janette x
And theres a bump from me too x x
Hi and thanks to all my bumpers
Snowy bump… now there’s an idea, I have a picture in my mind of a snowball gathering momentum. Will it grow big enough to be noticed… or will it melt… or be put away in the freezer till Pink(but-maybe-not-black)-tober 2015??
I like the idea of the black as a reminder of the nastiness of sbc/mbc in alll the fluffiness of the pink. Think all charities should be involved and feel they need to make sbc/mbc more prominent - as someone who has been diagnosed quite recently compared to many of you, I’ll admit I was totally unaware of this horrible side of the disease, both emotionally and physically for us and our families, and like many people had the wrong impression about surviving bc. Education and awareness is so important I feel.
LD x
My wish for 2015:
I have had a lot of chemotherapy and I do think I have some cognitive impairment. My wish for 2015 is that others with secondary BC can take up the baton and (working with BCC) help raise awareness to the level that it deserves. I am thinking of people with bone mets only (I have liver mets) and who are on Herceptin or long-term hormonal therapy, so their brain is less likely to be confused than mine is.
Thanks to everyone for bumping this thread and for all the comments and ideas around pin badges. We are pleased to tell you that we will be producing a pin to signify support for people with secondary breast cancer which will appear in our merchandise catalogue next summer. We will be seeking views on some possible designs on the forum in the new year but it will be some form of butterfly as our other butterfly has been very popular and it is economical to produce.
We know some of you were very keen on also producing a candle pin and we would be happy to support you to do this by putting you in contact with our suppliers.
Thanks again for all your comments.
Posted on behalf of our merchandising team
Anna