Secondary Breast Cancer Awareness Day 2012: shine a spotlight on secondary breast cancer

[Guest user]

Thanks mrsblue.

[mrsblue]

Survey done (online) Thanks to all concerned.

[Anna_BCC]

Dear All

13 October was Secondary Breast Cancer Awareness Day and you may have seen publicity or taken part in some of the activities around it. We’d like to know what you thought of the campaign – please tell us by taking a few minutes to complete a short survey. There are 20 questions and you can skip any that you don’t want to answer. The survey is anonymous – we don't need your name or details. You can complete the survey online, or please get in touch if you’d prefer us to send you a paper copy. If you have any questions please call Jill Ratcliffe in the marketing team at Breast Cancer Care on 020 7960 3422 or email jill.ratcliffe@breastcancercare.org.uk

With all good wishes

Anna

[Guest user]

We've written a post on all our activity around secondary breast cancer awareness day this year, and how many people we've all reached out to so far http://www.breastcancercare.org.uk/news/blog/thank-you-helping-us-shine-spotlight-secondary-breast-c...

[na7asha]

Thanks for posting the link to the film Leah. I'm having a bit of a wobble so found that quite encouraging,

[Guest user]

Here is a blog post on the US Huffington Post about metastatic breast cancer awareness day.

There was the annual conference of the Metastatic Breast Cancer Network and you can see more details about MBCN's work on their facebook page. On that facebook page people have posted links to coverage in the US press.


While I was looking, I found this film by the Canadian Breast Cancer Network, called "Metastatic begins with ME", which has women talking about their experience. Not sure if it's been linked to before but thought it was interesting.

[mrsblue]

Hi Leah, glad you checked this thread and posted... media awareness is improving!
To summarize, there has been coverage in:
The Telegraph, The Independent, STV, Daily Record, Women’s Weekly, Stylist magazine, K9, QVC, Hull Daily Mail, Nursing Times, MSN News, The West Australian / Yahoo news Australia, Yorkshire Post, Exeter Express & Echo, STV again (MSP), and Huffington Post.
Speaking of HuffPost (I know there is now a UK section/site) : Leah or someone, please could you let us know what the bc community in the USA did this year for its Metastatic Breast Cancer Awareness Day?

[Guest user]

Thanks mrsblue - Anne, who writes the blog you linked to, wrote a blog about secondary breast cancer awareness day for the Huffington Post UK, which is here http://www.huffingtonpost.co.uk/anne-morgellyn/secondary-breast-cancer-_b_1950563.html

We've updated this page showing all the major coverage of secondary breast cancer awareness day that we're aware of.

[mrsblue]

Just been sent a link (by my local support group for all types of cancer) to:
http://www.topicofcancer.blogspot.co.uk/
See entry for 10 October, about secondary bc awareness. - I hope I have posted a link that works. Not sure if BCC - and forum users - had seen this one, but better to be told twice than not at all!

[Guest user]

Morning all
Just wanted to report back on the Thunderclap that so many of you participated in. In the end, 426 people signed up to the Thunderclap - we were aiming for 250 so that was really good. Their tweets and Facebook updates directly reached nearly 300,000 people (based on the number of followers and friends of those 426 people) and would have reached many more via retweets etc. Thanks to everyone who helped to raise the profile of secondary breast cancer with this action.

[na7asha]

Hey Moondog,
Seconded by me, I'm wearing my homemade ribbon, not that anybody seems to have noticed 😞
I hope all of you are pain free and enjoying your day. Lots of love xxx

[Guest user]

Good morning
As it's Secondary Breast Cancer day, I want to wish all of the secondary ladies (and men) on this forum all the very best. If you are feeling poorly, I hope that you are able to get comfortable and send you big hugs. If you are well, I hope that you are enjoying your day to the full.
As a secondary lady myself, today I will be giving cancer the one fingered salute.
Strength to you all
Moondog x

[Guest user]

Lou Rall, who is living with secondary breast cancer, recorded this video message about Secondary Breast Cancer Awareness Day.

[video:http://vimeo.com/51141469]

If you'd like to add to our "Day in the Life" series to show what it's like to be living with a secondary diagnosis you can do that here http://www.breastcancercare.org.uk/secondary-breast-cancer-awareness-day/day-your-life. More than a dozen people have already done so (in addition to the original seven) - so do take a look if you haven't already.

[Guest user]

Thanks for the link Moondog.

We had a lovely tweet from Lesley Griffiths, Welsh Minister for Health and Social Services: "@bccare's #spotlight campaign for Secondary Breast Cancer Awareness Day has my full support. Great use of social media #twobbying"

The responses will come in gradually, I think, but already this morning we've had twitter responses from 3 Welsh Assembly members, 6 MSPs and 3 MPs, and we had retweets from cancer networks and other charities as well.

So thank you to everyone who tweeted their MP/MSP/AM this morning. You can still sneak in a tweet if you haven't yet and you can always email or write to them instead. Our campaigns team would love to hear how you get on with any contact with politicians, so do email them on campaigns@breastcancercare.org.uk.

[Guest user]

I've just spotted this one
http://www.nursingtimes.net/nursing-practice/clinical-zones/cancer/cancer-ignorance-isolates-women/5050604.article

[Guest user]

I think I've seen your tweets southpool 🙂

We've also had supportive tweets from Denise Lewis, Amanda Mealing, Steve Brine MP, Jackson Carlaw MSP and a few others already as well.

[southpool]

Bump again I am tweeting madly & good to see Gerri Halliwell has joined in, which is fab.

[Guest user]

We've seen a few more articles today, like this one on MSN http://news.uk.msn.com/health/cancer-ignorance-isolates-women - resulting from a poll we conducted.

[na7asha]

My MP is not on twitter, how ridiculous. Will write to him instead, but my Cancer centre has already signed up so am going to plead for a bigger slice of the funding budget than 5%.

[Guest user]

Thanks southpool - I'm lining up a tweet to my MP as we speak...


We've also got a message from Jane Hinnrichs, our Chair of Trustees, on our website to mark the day.

[southpool]

Bumping up. Get lobbying your MP's on twitter at 10 am. This needs to be trending and knock all that bloody pink merchandise out the headlines. Get working that social media!

[na7asha]

Phew!!!

[Guest user]

Great news on the Thunderclap: we just reached the minimum target of 250 people donating their twitter or facebook status to raise awareness of secondary breast cancer. This means the thunderclap will definitely go out on 13 October.

People can still sign up - and the more people who do, the further the message will reach and the bigger impact it will have - so please do sign up if you haven't already. But for now, thank you for helping us reach that target!


In other news, we have a new blog post on the Breast Cancer Care homepage about our campaign to raise the standards of care for people diagnosed with secondary breast cancer and all the ways you can support the campaign http://www.breastcancercare.org.uk/news/blog/shine-spotlight-secondary-breast-cancer-awareness-day-13-october

[katytc]

Only 30 more needed three days left, cmon girls!!xx

[ClareK_BCC]

You can find the link to Ismena's article, and other media coverage of secondary breast cancer, here.

If you're not on twitter or Facebook (and even if you are), there are lots of other ways to spread the word about Secondary Breast Cancer Awareness Day. As well as giving copies of 'A day in the life' (our printed booklet) out to friends, family, colleagues, healthcare professionals and so on, please take any of the actions listed in our new campaign guide 'Taking action together'. Actions include visiting your MP, MSP or AM, and writing to your local Cancer Network. You can read it online or if you'd like a printed copy of the guide, please email secondary@breastcancercare.org.uk - thank you.

[Guest user]

Afernoon All ,

Joined the thunderclap and shared on my face book .

Please read the blog by Ismena Clout - Her words echo so much what we are going through with Secondary cancer

Have a lovely evening every one - Roll on Friday

Love Rosie chin xxxxx

[Guest user]

Thunderclap is a site that allows you to donate one tweet and/or one facebook update to a particular cause. If (when) we reach our target of 250 people signing up, the Thunderclap site will send out the tweets and updates at the same time (in this case at 1pm on 13 October). The aim is to make a bigger impact than if those updates trickled out over a few weeks. So the updates will appear on Facebook and Twitter all at one time.

Thunderclap is based in New York but they've used an Italian domain so their web address is "Thunderclap It" (thunderclap.it). Quite a lot of sites use other domains for that purpose - either for making their web address spell out a word or phrase, or for making their web address shorter. You can read more about this on Wikipedia.

The "twobby" is a twitter lobby, that is, an online version of a real-life lobby (which is where people would all arrange to see their MP about a specific subject at a particular time). Here are a couple of examples of recent charity lobbies of parliament: social care lobby and brain tumour charities' lobby.

So instead of turning up at Westminster, or the Senedd or Holyrood, we're asking people to tweet their MP between 10am and 12 noon on Friday 12 October to ask them to ask their local Cancer Network to sign up to Breast Cancer Care's standards of care for people living with secondary breast cancer in their area. There are some suggested tweets on our site, as well as info about how you find out who your MP/MSP/AM is and where they are on twitter.

[mrsblue]

Please, Leah, can you explain what exactly Thunderclap and Twobby are??? I have heard of Facebook and Twitter but I do not use those sites. I have never heard my three computer-savvy adult children referring to Thunderclap.
And why does this use a site thunderclap.it - are they doing something special in Italy for secondary breast cancer this month?

[Guest user]

Just wanted to say thank you to everyone who has signed up to the Thunderclap so far. We're up to 70% of the target now, so it feels within reach! Only a few more days to go, though, so if you haven't signed up yet (and asked your friends to too), please do.

Thanks!

[mrsblue]

Today I received my 2 copies of "A day in the life" (having received in a separate mailing, a few days ago, 2 copies of your general Support for SBC booklet, which I had NOT requested! - waste of BCC's resources for unnecessary postage, though I will pass them on to my BCN/clinic with a copy of "A Day").

"A Day" is in A5 format, 22 pages. (No, I'm not in it!)
Suggestion for 2013: focus on celebrities (living or dead) with bc mets. Not my idea, see a previous posting! Time to get planning now?

[ClareK_BCC]

Thank you very much to everyone for your support. We are starting to see articles about Secondary Breast Cancer Awareness Day in the media with more to follow. Our list of coverage here now includes pieces on the Telegraph, Independent, STV and K9 websites, and in Women’s Weekly magazine.
We have more coverage in the pipeline and will add pieces to our list as they appear, including case study Frances Dean featuring on QVC's 'Be aware, show you care' show which is on from 6 to 9pm on Wednesday 17 October.
If you spot any media coverage mentioning secondary breast cancer or ‘A day in the life’, please email us at secondary@breastcancercare.org.uk

And if you’d like to help us generate media coverage by talking to journalists about your experiences, please email press@breastcancercare.org.uk

Please continue to send information about the Awareness Day to everyone you know. If you’re on twitter please tweet using #spotlight and @BCCare - and encourage people to join our twobby on Friday and thunderclap on Saturday.

[lucinda]

bump

[na7asha]

This works
https://www.thunderclap.it/projects/407-secondary-breast-cancer-day

[lucinda]

ok if you try to click on the link that has been posted you get a security warning, but if you google thunderclap secondary cancer
you will get the same link which works.Not sure why but please everyone post your support we really need to bring awareness of secondary breast cancer to attention of the world at large.

thanks for your support

L xx

[lucinda]

thanks for your kind sentiments rev cat,unfortuneately this link seems to have the same problems so maybe someone has another link.

[RevCat]

Think this needs a BUMP as I checked the thunderclap and it is still less than half way to the required number of people... c'mon everyone, we all need to get behind this and support the secondaries folk, who are always there for us "1ary and NEDdy" people to encourage us on our way.

The link is here: https://www.thunderclap.it/projects/407-secondary-breast-cancer-day

(The link for higher up this thread seems to have got corrupted as I get security warnings if I click it)

[stressy_messy]

I'm a 1aryNEDdie and have signed up and sharing with family and friends. xxxx

[stressy_messy]

Grrrr,posted twice (can't get used to these new forums lol)

[na7asha]

Mrs Blue, that's the only story I've found this month. Feels a little liek we're banging our heads against a brick wall. and I guess BCC can't force people to publish a story. Is all a bit depressing. There must be famous people with mets? Maybe if you see a story on Primary Cancer you should respond to it. Hmmm, maybe we need a strategy.

[lucinda]

thanks for posting xx

[mrsblue]

Searching on "secondary breast cancer awareness uk" / this week, I do see lots of BCC-related links 🙂
... and this one:
http://blogs.independent.co.uk/2012/10/02/secondary-breast-cancer-i-live-with-a-black-hole-for-the-f...

[Guest user]

Thanks to everyone for trying to bump up support for the twobby and thunderclap.

As you've found Na7asha, trying to get robust statistics about the number of people diagnosed with secondary breast cancer is very difficult, not least because until recently most cancer registries simply weren't recording them. Following Breast Cancer Care's campaign on data collection, cancer registeries in England should now be recording those statistics, although it will take some time before that actually leads to reliable statistics. We are continuing to campaign in Scotland and Wales for collection of data on secondary breast cancer. It is estimated that there are approximately 36,000 people living with secondary breast cancer in the UK.

We are hoping to see more coverage over the next couple of weeks, although it is difficult to predict. We've worked intensively with journalists to explain about secondary breast cancer and that has led to a significant increase in coverage over the past couple of years, which we hope will continue this year. We have worked to integrate messages about secondary breast cancer into our other Breast Cancer Awareness Month activities, so there were models with secondaries in the fashion show as well as video features about their lives. Those videos will feature elsewhere as well, such as in the QVC broadcast on 17 October.

In this week's Woman's Weekly there is a double-page piece on secondary breast cancer, featuring Pauline Polley who was diagnosed 6 years ago. It also mentions Secondary Breast Cancer Awareness Day and the Spotlight campaign. I'll try to keep you updated with any other coverage that we manage to secure - obviously it's not certain until it's actually printed!

In terms of breakfast tv, lizcat, we've had some coverage on This Morning and STV but so far nothing specifically about secondaries. We'll keep trying, of course. This story about Lesley, a radiographer who has been diagnosed with secondary breast cancer, has been covered widely in the Scottish press.

We are hoping for more coverage as Secondary Breast Cancer Awareness Day approaches, and I'll try to keep you posted on that. In the meantime, if you spot anything, post it here on this thread.

[lizcat]

Have BCC any plans for getting a slot on a breakfast/morning show about secondary bc at all?

I appreciate it is not a cheery, happy scenario for the pink, fluffy success stories wanting to raise awareness and get women (and men) to check themselves early but even a couple of minutes explaining what secondary bc is would perhaps raise prominence. Unless you have come into contact with anybody with mets, you won't have a clue what secondary cancer means be it breast cancer or other forms. I've found I've had to say to people asking if I'm now ok that no I'm not, I have terminal cancer. Sounds harsh but sometimes it's the only way. They take a step backwards as I don't look ill and are under the misapprehension that someone with terminal cancer should look sick etc all the time which as we all know isn't necessarily the case.

When you look at the numbers (and I know there is no accurate data about exact numbers because it has been 'ignored') of people affected by bc mets - say 30% as has been quoted - this makes something like 15000 people a year who are diagnosed with and living and dying from the cancer spreading. Frightening.

Liz

[southpool]

Bumping up latest posts. As rev cat says we should all be joining in on this.

[Quail]

Here, here. I totally agree. It's all about "a cure", and "think pink" and, you know, ring, ring--there are an awful lot of us who are looking for help for today.

[na7asha]

I have secondaries, and I can see that BCC do alot for us. Problem is that we were such a hidden unknown quantity that they're playing catch up. It's not that I don't appreciate everything they do, more that we're so overwhelmed by the pink publicity that the little that is done for us is lost.

I've been keeping an eye out for news stories so I can tweet etc but there has only been one in the last week.

I want to do alot more. Have changed my fb picture to a ribbon but it's not official. Tried the BCC pinbadge but felt it lacked impact. We really need to use this month to shout about who we are, we're living ordinary lives and for us, there is no end to treatment. If the stat I found is correct, secondaries account for 30% of breast cancer sufferers, we don't appear to have 30% of the media & pr spend of bcc let alone the other charities and other companies cashing in.

Would love to be wrong though???

[mrsblue]

Thanks, RevCat and others... including you BCC folks who have indeed ackowledged the reality of secondary BC.
I'm not interested in social networking myself, so, what else is BCC doing for us this year, other than the webpages and "A Day in the Life"? As has been said before, there should be something about secondaries on the BCC home page. How about pink and black for 13th October? Or... surprise us!

[RevCat]

Have signed up... now a little over 80 people... shocked so little response so far. Come on all you 1ary NEDdies we must get along side our 2ary sisters.

[southpool]

Mrs Blue you're not & I don't have secondaries. To there credit bcc are the only charity who are campaigning on secondaries this month & in my view it should be their only priority. Leave the pink & fluffy stuff to the other charities & devote the month to campaigning on something that really matters & is long neglected.

Sorry if this feels like a rant but it is something I feel really strongly about.
S x

[mrsblue]

Mike said "annual fashion show has passed (this was held last night), we will begin to promote our campaigns more prominently"
I have secondary breast cancer for life, not just for 13th October, and I have had secondary breast cancer throughout October including on the day of the fashion show. Am I the only person who is unhappy with BCC's priorities for this month, I wonder?