I may be mistaken but I haven’t seen anything about this on the morning breakfast tv shows and would have thought that something may have been on, albeit briefly, in view of the fact that BCC are wanting to raise the profile of secondary bc on behalf of those of us with mets. I know there are other ‘events’ about it but 2 minutes on mainstream tv would have been fantastic. Disappointed.
Liz
Ive not heard or seen anything either. Maybe Secondary bc is too scary!!!
Sadie Xx xxv
Me neither…lots about Steps reforming (waves to juliet) X factor and Strictly in the news though. :-/
Been posting this link in the Secondary forums, again! But it’s still an inspirational read for me and as it is Secondary Awareness Day.
bcna.org.au/sites/default/files/messages_advanced_cancer_0.pdf
Scary indeed, but a lifestyle for those of us with secondaries… and a bitter reminder for those who have lost a wife, a sister, a mother or even a daughter to breast cancer.
A pink ribbon pin with a black central stripe might raise awareness? I’d buy some if BCC produced this…
Hi All
Just to let you know At Breast Cancer Care we’ve been working hard to raise the profile of secondary breast cancer across all media. Although we did put forward a number of ideas and supporter stories to all of the daytime TV shows we weren’t successful in securing TV coverage, we do hope this will change in future.
To mark the second-ever Secondary Breast Cancer Awareness Day we have seen more coverage than ever before within the women’s magazines and some radio and local TV stations. To date, we’ve secured over 16 different in depth features on secondary breast cancer, coverage has appeared in woman&home, My Weekly, The Telegraph online, The Mirror, BBC Look East and The Vanessa Feltz radio show and many more.
Today, we’re hosting an event in Westminster for MPs around the country here they have the chance to people with secondary breast cancer, with the aim of campaigning them to improve treatment and care for people with secondary breast cancer.
If you would like to see some of the coverage here is the complete list…
We’ve seen coverage of secondary breast cancer, ‘The little things that make a big difference’ and Secondary Breast Cancer Awareness Day featured in various newspapers and magazines and newspapers. So far we’ve seen coverage in:
•woman&home magazine (October 2011 issue)
•The Telegraph online (6 October 2011
•Women’s Fitness magazine (out now)
•The Brighton Argus (local newspaper, 29 August 2011) Denise Bartup speaks about living with secondary breast cancer)
•Grazia magazine (October 2011 issue) (Ellie Jeffrey speaks about living with secondary breast cancer)
•Dorset magazine (October 2011 edition) Pauline Polley speaks about living with secondary breast cancer)
•My Weekly (out 13.10.11) news in brief about the book
•The Vanessa Show (BBC Radio London) today. Ellie Jeffrey and Emma Freeborn, who are living with secondarieis, and Olivia Marks-Woldman Head of Policy at Breast Cancer Care talk about Secondary Breast Cancer Awareness Day
•Look East (7.10.11) Liz Carroll, Head of Policy and Research at Breast Cancer Care speaks out on Secondary Breast Cancer Awareness Day and Rachel Lane and Christina Quilter talk about their diagnosis of secondary breast cancer
And coverage will soon be appearing in:
•My Weekly magazine (out 29 October 2011) (Marie Hecht speaks about living with secondary breast cancer)
•Woman magazine (out 4 October 2011) (Angie McMillan, who modelled in our Glasgow Fashion Show, speaks about living with secondary breast cancer, the awareness day and The little things that make a big difference)
•Saga’s email newsletter (due out in October, date TBC) (Information on the awareness day and The little things that make a big difference)
•Woman’s Own magazine (out 31 October) (Frances Dean talks about The little things that make a big difference and the impact of her secondary breast cancer diagnosis)
•The Times newspaper (Body & Soul supplement in the Saturday issue, date TBC) (Francesca Pattison talks about living with secondary breast cancer at 31 years old and is photographed by her friend Karen Armstrong at various stages of her cancer journey)
I hope this helps to clarify a bit more about whats happening for the awarenss day.
Best wishes Sam, BCC Facilitator
Thanks Sam. Had a feeling it may have been the case that TV air time couldn’t be obtained. Perhaps, like SadieL says, it’s too scary a prospect and they would prefer to do the ‘success/cured’ stories instead. (I use those terms very loosely of course!!)
Liz
Well done bcc, that is a long list!!! Glad some people are not ‘put off’ by the scary nd v real side of bc!!
Sadie Xx Xx
I agree that it’s very disappointing that the media have given little coverage to secondary BC, but then what have us stage 4 peeps done to make this issue newsworthy? This is not a criticism, but it seems to me there are so many areas that need improvement (particularly in relation to the availability of drugs and treatments), yet all we seem to do is grumble on forums such as these.
I actually think BCC have had a good bash at getting publicity, but like all charities they are actually constrained by the Charity Commission, and cannot get involved in overt campaigns to change government polioy (and that’s the sort of stuff that gets media attetion). While those of us with metastatic BC may find it interesting to discover how others live with stage 4, and learn various tips and hints etc, it’s not really the stuff that interests journalists.
I am not sure how you are feeling in your day to day living Lemongrove but I am exhausted.
I have mets in my spine and lung. I also struggle with fatigue, s e of treatments and anxiety. I have a stroppy daughter, demanding family and am trying to do an almost full time job.
Coming on here is just about all i can muster. I emailed my MP and dealt with the response. I am vociferous to my friends and family. I am attending a conference with some of the great ladies I speak to on live chat.
I am not sure what else I can physically do. Secondary breast cancer and all it entails is swept under the carpet. As has been said many times before…it is not as appealing as the pink and fluffy stuff…People ( including my friends and family) just do not want to know. They seem incapabable of understanding. Maybe just a short news report may have helped !!
I put something on my facebook wall last year. Just one person responded saying that they really did not understand it and more people should know about it.
Recently I have made a few posts about the reality of my life and people have messaged me privately…saying things like ‘chin up’ or ‘think positive’. I have explained until I am blue in the face. I have had this secondary diagnosis 3 and a half years ( of which i am grateful) but people are no closer to understanding now than they were then…despite me banging on !!!
Ah Juliet66,
You put it soooo much better than me!! It would have been great if the news channels like the BBC and ITV breakfast or teatime bulletins had made even the briefest of mentions of the day. I do feel I should do something and put my money where my mouth is so to speak but don’t seem to have a clear enough mind to sort out even a starting point.
Wouldn’t care but as you know I don’t have children to deal with or as many mets!!
Liz x
Lots of us have tried to raise awareness over the years. Up until just a few years ago breast cancer charities themselves were not so up front about secondary cancer and during that time a large number of us channelled our efforts to change this…and we have come a long way. Seems there is a media friendly ‘awareness’ which doesn’t want to find the time to confront the darker pink which would show just how many thousands of us live and eventually die from secondary cancer.
And even after all the Pink October ‘‘awareness’’ secondary cancer is still often reported incorrectly. I remember reading Wendy Richard had died from liver cancer. Sigh. (Remembering debsincorwall and JaneRA as I type this.)
I know Belinda xxxx
Even someone I have known for a long time ( and credited with a bit of understanding) said " I just cant understand you having lung cancer, you have never smoked "!! This is despite me banging on about secondary breast cancer.
When i said, " No, its breast cancer ", the look of confusion showed she still did not get it…I suppose this is the same for many others.
Julie x
I try to do my bit, but admit I am too busy/or too tired to try again when I meet with obstacles, which I always do!
I e-mailed my MP last year about secondary BC awareness and received a ‘generic’ letter saying the government have already improved early detection of ‘bowel cancer’!!!
I was interviewed for a newspaper article last October, I voiced all I could about secondaries and living with uncertainty etc - I was published to some extent accurately, with regard to personal details time events, but the only mention of secondaries was I was trying to stay positive since receiving a secondary diagnosis!! Nobody reading would have been any the wiser about what that entailed.
I have just recently sent ITV and Lorraine Kelly an e-mail in response to the Bernie Nolan interview, asking her to include something about secondaries and the true reality of BC treatment, not being ‘just a year out of your life’ but that it destroys and takes lives too. I informed them of secondary BC awareness day on the 13th, but only received an automated response thanking me for my e-mail.
We are ordinary people trying to live what we have left of our lives, I don’t have contacts with TV, radio companies, so don’t see what I can do to raise awareness in the media. If anybody knows, I would quite happily ‘spout on’ about secondary BC to anybody willing to listen. However I don’t consider it as grumbling. Those of us with secondaries have been dealt a crap deal! Yet nearly everyone I have met on here is upbeat and remarkably positive considering their situation and support others, in a way that those without secondaries will never understand, more than ‘grumbling’.
I went along to the Secondary Breast Cancer Awareness Day at Westminster on Thursday. It was heartening to meet new and old faces and to be present to hear what is happening in ‘our’ world. Steven Brine MP popped onto our table to listen to our discussion after the presentation. Everyone had their say and I did raise the topic of the difference between primary and secondary breast cancer. We are placed under one pink umbrella, but our needs are clearly very different. I was rather disillusioned to hear that there are only 20 specialist secondary breast cancer nurses in the UK however, BCC are doing their utmost to petition Parliament for more. Juliet, I agree that it can be disappointing when posting stuff about secondaries on Face Book. I started writing a blog, firstly to help me process my feelings and secondly to say what I want without criticism!! I have found that despite posting regularly about secondaries, many of my wider circle of friends simply didn’t understand the implications. Breast cancer equals cure to a lot of people. Sadly, in our cases it means only control (hopefully) of our symptoms. I completely understand that many of us are struggling and find it difficult to participate in events, but even a simple e-mail to an MP means that we are contributing something. And, yes, it would be great if the media showed more interest but I fear that will always be an uphill struggle.
Alison
drbaba.wordpress.com
Juliette 66 and Nicky 65, I agree that campaigning isn’t easy when someone feels ill, depressed or demoralised by the apparent indifference of the public/media, but in my experience, the answer to that is to join forces with others and concentrate on specific issues. As you may know from numerous posts I have put on this site, since receiving Cyberknife myself, I have been actively campaigning to get all PCT’s to fund it. In the beginning I just wrote a few letters and Emails to my local Specialised Commissioning Group, and MP, but like the both of you, I got nowhere. But I plugged away, and by giving talkes to various support groups and setting up an on-line petition (which now has 600 signatures), I came into contact with others who were also campaigning on this issue. As a result, a group of us decided to band together to set up a charity to provide information and raise awareness of Cyberknife, support those trying to get treatment, and raise funds to help hospitals with the acquisition of it - and this in turn attracted the attention of the media and led to several articles being published in the press, as well as a news item on ITN.
I read somewhere that one in three people will get cancer at some stage during their lives, and if that figure is correct, then cancer patients could potentially be the biggest pressure group in the Country. But instead of getting organised, we just seem to have a bit of a grumble on sites like this, and complain that the public or media are not interested.