Your thoughts please: Ideas for secondary breast cancer symbol

[Bumpkin]

This is excellent news. Thank you Anna and BCC. If the voting 'slip' is accompanied with the right words, there will be no doubt about what this pin represents. Bumpkin x

[rosie53]

Thank you for listening to us......I just hope it is not going to be an age before the one that gets chosen actually gets commissioned!!

Janette xx

[belinda]

Thank you Anna.
But yes good points Tinks and Lemon D, alarm bells ringing in my head now, this needs to be a secondary lead decision. By the very nature of stage 4 I wonder how many BC voices are living with mets? It would have to be, sorry being honest here, an ever ongoing recruitment drive to keep the numbers up. The "differing" opinions reference is worrying. Looking at the peach stripe options 2 and 3 I hope we are not going to lose out at the last hurdle. Life with secondaries is not peachy. 😞

[Bonnie8862]

Personally I am pleased to see the ribbon with black on to choose from. ill look forward to it becoming available soon to buy and bring secondary breast cancer a little further into the open 🙂

[LemonDrizzle]

Thank you for commissioning a pin for sbc/mbc.
I completely agree with you Tink. I still feel we might not get a pin that we want looking at the options and the wording of the latest post though. Hope I'm just being very cynical and the pink and black ribbon that we all want to represent our disease goes ahead.
LD

[Tinkerbelle]

Thank you for listening to us and for the choice of pins - this is good news.

I would like to ask though, how many people with sbc are represented in the Breast Cancer Voices group?

The reason I'm asking is that primary ladies rarely want to think about the possibility of death from breast cancer and might opt for the pin that, to me, least represents the realities of sbc.

Are the differing views from sbc ladies or primary?  I feel this is one area where the views of secondary ladies should come first.  This pin was supposed to be for those with secondary bc and to raise awareness of the realities that go with it.  The black was to honour all those ladies and men who have gone before us hidden and unheard.

Tink x

[Lucy21]

I am very sorry to hear this Mrs blue . My thoughts and prayers are with you .
You were one of the First Ladies to offer support when I was first diagnosed back in jan 2014 . X

[Anna_BCC]

Dear All

I am really happy to let you know that a new ribbon is being commissioned to be dedicated to and representing secondary breast cancer.  As you can see there are 5 choices of design for you to choose from. Please watch this space as tomorrow there will be a link through to vote for your favourite. We will then also be consulting with  Breast Cancer Voices and asking them to vote as well. Of the five designs, four have a black thread within or part of the ribbon. We have received differing feedback on black being incorporated in to the ribbon and so the other one does not have black. Do have a look and please do vote from tomorrow onwards. We will then commission the most popular ribbon and produce a new pin badge.

Thank you all for your passion and determination.

Best wishes

Anna

Forum Coordinator

[Bumpkin]

This is an old report. I wonder if BCC is planning a new one. It would be marvellous to have a 'virtual' task force so we could all contribute, despite being physically unwell enough to go to a conference or group meeting somewhere. Technology has moved on strides. Bumpkin x

[belinda]

It opened my eyes reading the PDF Helen and not in a good way. 😞
Interesting to see the posting about the helplines being open on Tuesday Lemon D following the Lisa Lynch drama, The C Word. It's posted in various other forums here. I think this itself shows how many women, through no fault of theirs, have absolutely no idea of the reality of secondaries. A thousand women die every month, fact BCC.

[2catlady]

Belinda,I've just read the report. SBC in the spot light ,laughable !! I go to the northern Cancer care centre,a centre of excellence in Cancer care and even they don't have a SBC nurse.

Well,I think I'll be in my pine box before we see a pin.

Just totally fed up with all of this,it's not as if we are asking them for the next space shuttle!
Why can't one side of the ribbon be black and the underneath bit pink( black being the most prominent colour) surely cheaper than the sparkly pink ribbon.

I can't believe nobody in marketing even thought about SBC. Ribbon for men,cuff links for men,pink sparkly ribbons in every size for bc. And not a thought given to us.

[LemonDrizzle]

If it wasn't for the seriousness of this disease it would be laughable how we're being treated and how nothing's being done. What you've all said is so true and I'm beginning to think I can't be bothered giving my thoughts as they're clearly being ignored. With all the advertising about The C word being shown on Sunday, I'd like to think this will change as millions of viewers will be introduced to the reality of sbc/mbc and it would be a great opportunity for a pink and black ribbon to be developed quickly on the back of this as a tribute to all the wonderful ladies we've already lost

[2catlady]

Belinda,I'm totally baffled with their procrastinating 😡

Is it because we didn't play ball with the butterfly and like naughty children we have been put on the naughty step?

A prototype? Well look in gift shop,apparently you have ribbons there.!!!!

I'm so annoyed with the excuses and once again we are second best.

Come on bcc get a ribbon for Mrs blue,Lulu,Vicky,val,liz and all our friends we have lost and the 33 women that died today from SBC and the 12,000 that will die this year.
We do matter and deserve to be represented with ONE ribbon in the sea of pink sparkly ribbons in your shop.

[LemonDrizzle]

Mrs Blue, the light from your candle will definitely shine on x

[belinda]

Tink and Helen I hear you! The need for prototypes, more discussions? I'm baffled.
I clicked on the link in Anna's post for Breast Cancer Voices and read the user report, further down the page, for 2011. Everything seems to move very slowly, yes we do now have a dedicated Secondaries day as mentioned in the report but it's still blink and you would miss it. 😞 Apparently in 2011 there were 650 voices and everyone is listened to but surely this large number guarantees everything is going to be slow to change, slow to progress?
Link here to user report,
http://www.breastcancercare.org.uk/sites/default/files/files/pdf/user_involvement_report_2011_0.pdf

[June_BCC]

Hello Mrsblue

I am so sorry to hear this, you are in my thoughts.

June, moderator

[Tinkerbelle]

Helen, I was thinking the same thing.

Hypothetical conversation:

BCC - You know the pink pin you supply for us.

Producer -  Yes

BCC - Can you put a black edging on it?

Producer - Of course we can - no problem.  It'll take 3-4 weeks.  How many would you like?

Tink x

[Tinkerbelle]

Oh Mrs Blue - I'm so very sorry to read this.  My love to you and your family. 

We will keep pressing on with sbc awareness with your candle in our hearts and a pin on our lapels. x

[2catlady]

Bcc ,as always you seem to put obstacles in the way .it seemed odd a butterfly was so easy to make and get ready for summer to sell,and a world wide symbol for bc suddenly becomes difficult!!!!
Costing,feasibility ???? Did you do this for the few men effected by SBC as they have a ribbon.!!
I'm sorry but you do make us feel second to the PBC.
We have lost so many ladies who I'm proud to call friends in the short time I've been on here,so come on bcc put your money where your mouth is and honer these ladies with a ribbon for SBC.

[2catlady]

Oh,Mrs blue,I'm so sorry to hear this very sad news.
You have always been an inspiration to everyone. and a fearless campaigner to give SBC a voice.
I'm sending all my love to you and your family. You're a very special lady.
Helen xxxxxxxx

[pam01]

Love and best wishes to you and your family.xx

[belinda]

Dear mrsblue, we do go back a long way here on BCC you and I and I'm so, so very sad to read your news.
I hope the care you are now receiving is helping you feel as comfortable as is possible. With much love to you and your family. Thank you for the pm's in the past, your unstinting support to all here. Your very special unique candle shines brightly. Belinda. X

[rosie53]

Mrsblue, sending you and your family all my love and hugs.....i will also need bleeping...hate this **bleep** awful disease!!!!
hugs Janette x x x x

[Bumpkin]

Mrs Blue. You will be on my mind all day and beyond. So sorry. Wishing you peace of mind and quality time with your loved ones, and a miracle if one could be found. Someone moderate me. I hate this **bleep**ing disease. Bumpkin

[Marie123]

I am very sorry to hear this. In my thoughts and prayers.

Marie xxx

[mrsblue]

Hi all
I'm writing this in hospital. Now on palliative care. An effort to post so this will be my last to the forum. I've other uses for quality time, you'll understand. Good to know some of you on here over the years.
Let's keep pressing for better sbc awareness in UK
X x x

[Bumpkin]

Speaking as someone who ran marketing depts for large organisations, including in the not-for-profit sector, I am amazed at how onerous you are making this. Another pin, already using existing tooling, is not another project, only an addendum to an existing one. Hardly any work and minimal costs for large profits.  A no Brainer. And then there is the inestimable reward of hearts and minds. It is damaging to your reputation to raise hopes only to dash them. Please remember we secondary ladies would be promoting sales to bring money to you. Terminal disease needs action not hindered by bureaucracy. Merchandise is such an easy marketing activity to which you seem to have applied a sledgehammer. It appears organisational processes require urgent review.  Regards Bumpkin

[lavendersblue]

Perhaps we should all join Breast Cancer Voices then , and have our opinion noted there too . It seems to me that a decision was made prior to any consultation , as so often happens in large corporations, and that now people realise we don't want a butterfly pin , they are just back tracking and finding a way of justifying their original design . Shame on you !!

Jill

[Anna_BCC]

Dear Everyone

I am sorry you are feeling disappointed and let down with regards the pin. The gift shop will be marketing a new butterfly pin this summer, as per their marketing plan, and felt it would be an idea to dedicate it to secondary breast cancer. With this in mind they opted to consult with you, the forum users, to choose which you felt most appropriate. There was an overwhelming majority that considered the butterfly not to be an appropriate dedication for secondary breast cancer and that a new or different pin would be better. Listening to your feedback and respecting the views of the majority the butterfly pin will not be used as a dedication to secondary breast cancer and this new thread was started for you as a group to discuss different pin/badge options and ideas.

We are still listening to what you want and really want to help and support you with this, but this is now a new and different project and as such will need to go through organisational processes. Listening to your views is the first step of this process; we also have other people affected by secondary breast cancer that we will include in this consultation, for instance Breast Cancer Voices . As this pin/badge will be a new addition to Breast Cancer Care, costing and feasibility will need to be established.  Designs agreed and improved, budget allocated and prototypes commissioned. This unfortunately takes time and I hear the understandable groans as I say this.

At this moment I do not have a timeline and I am so very sorry for that. Metastatic breast cancer is not secondary in importance it is very much equal to all the other areas of breast cancer we support.

With best wishes

Anna

Forum Coordinator

[Marie123]

For want of a decision the ribbon was lost.

For want of a ribbon the campaign was lost.

For want of a campaign the message was lost.

Marie xxxx

[2catlady]

LD,I totally agree,I'm baffled !!
Bcc post on beginning of thread says this?!? Yes,goalposts have been moved.

"This thread is yours to debate the options......
Our gift shop team will be happy to input if you'd like any feasibility assessment for manufacturing the symbol as a pin and they'll report tomorrow on the early view of option 3 "

LD ,I'm feeling very let down too. It feels like SBC comes in second all the time!

[LemonDrizzle]

Initially the post said about a sbc pin being ready for Summer, if I remember correctly. We've been asked for our opinions and have responded, yet the goalposts seem to have been changed now by this latest post telling us you do not have a timeline established and that you are seeking other people's views who have sbc along with the statement that there are processes to follow. I feel that we haven't given you the answers you wanted us to and are now going elsewhere, so I am feeling very let down at the moment.

[Anna_BCC]

Dear All

Thank you again for all your responses. This thread has definitely been used for its intention of discussing a symbol or emblem to identify secondary breast cancer as a cause in its own right. I have read the responses to my post this morning and I can hear the frustration already. Breast Cancer Care is an organisation which does have processes to follow and people to answer to. The stage we are in at the moment is talking to people who have secondary breast cancer, of which you are an important part of. We will also consult with others who have secondary breast cancer but do not use the forums.

I understand that you want concrete answers and dates but sadly that is not something I am able to give you as I simply don’t have them. I do assure you though that this is not something I want to allow to fade away and promise to keep you posted and updated as it moves along. I also know, because you have told me, that time is of an essence and I understand the fear that you won’t be here to see the end result.

You are all an important part of this process, we started with you! And I thank you for your continued engagement with this and I will do my best to keep you all informed of the progress we are making.

Best wishes

Anna

[belinda]

I wonder how many more thoughts are needed? It could take a while. 😞
I wonder how long it took to process the original pin and the pin for men?

[rosie53]

I second that Helen, unfortunately time is not on our side we need to get the message out and make women aware of this dreadful, ugly disease!!!

Janette xxxxxxx 

[2catlady]

Thank you Anna,sorry I thought the people affected with SBC were us and that's why we were asked !
I don't mean to sound rude.
What processes ?Please Can you give us a run down of them so we know what's going on!
We don't have the luxury of time unfortunately and we are eager to see something supporting SBC apart from one day a year.

[Anna_BCC]

Dear All

Your positive responses to this thread have been amazing and very informative to read. We are sharing all the responses with various departments within Breast Cancer Care. As yet we do not have a timeline established and this is a first step in user input regarding the new pin badge. We will be engaging with other people who have or are affected by secondary breast cancer for their thoughts as well. I fully understand that now you are seeing some movement forward you are eager to see that movement take on speed. There are processes which we need to follow and we will keep you posted as to how it is all going.

Thank you all once again for your continued support of each other and Breast Cancer Care.

Best wishes

Anna

Forum Coordinator

[rosie53]

Bumping up!!!!!

Janette xxxxxxx 

[2catlady]

Bumping up again.!

bcc hopefully you will have an answer for us by this weekend and this is not going to go on for months passing it on to another department,then another,as this tends to happen.
Let's "shine the spotlight" on the secondary ladies.

[Downbutnotout]

Thanks ladies. Wishing you all NED and looking forward to getting the pin to raise awareness.

Flo

X

[JulieD]

Flori that's great news! So very pleased for you, it does us good hearing positive stories too.

Looking forward to hearing more news about the pin.

[LemonDrizzle]

Flori, that's fantastic.
Thanks Jo, looking forward to the response from the managers x

[rosie53]

Bumping up too. Great news Flori
hugs Janette x

[2catlady]

Bumping up again.
Thanks Jo,hopefully you'll get back to us this week .x

[Pippie]

Flori - really please to hear your good news.
xPx

[Chocolates]

Flori - that's amazing. Such wonderful news. Thank you for sharing xxxx

[Downbutnotout]

Hi JulieD - No, I don't find your comments upsetting or offensive. As far as I'm concerned if it's incurable it's no different to secondary cancer. I do use the secondary sections now and have found it really helpful, though I haven't been on the Forum much over recent months. I've received a lot of support for which I'm very grateful. There are a few of us who have skin mets and so someone set up a thread specific to it, which is really useful. On a very positive note, I just found out yesterday that, following a good response to Gem Carbo chemo, I'm now NED!

[Jo_BCC]

Hi all,

I have brought this thread to the attention of our managers, and will get back to you as soon as we are able to.

Kind regards,

Jo, Moderator

[Chocolates]

Me too - same as Helen. Bcc can you give us a timeline of what will be happening and possible date for sale of pin. Thank you xx

[2catlady]

I'm tying to keep this visible so I'm bumping.
Bcc if possible can we have some feedback and hopefully a date when ribbon comes on sale.