Breast Cancer Now Forum

A little late again this year, but remembering Shaz with affection x ... View more

Ummm...why won't we know until Friday 11th? It seems utter madness to me. Honestly, if you read these forums thoroughly, you would understand our concerns without the need for a specialised closed forum.   I am very disappointed and quite angry, actually, at the woeful misinterpretation of what it means to have metastatic breast cancer. I understand the limited resources, but this year there will barely be a whimper...and on a Sunday, too.    As I have stated before, I was one of the original participants at the launch of Secondary Breast Cancer Awareness Day. Of the five women with whom I remained in contact, I am the only one still alive. These are the realities - along with anxiety over drug funding and the feeling of being 'secondary' in every sense. We are not the most reliable of groups - we are ill, we are having constant treatment, we die; however all of us here are passionate about enabling a better future for patients in the future.   I feel very let down.   Alison ... View more

I thought the same as Lemongrove - protest wise - but, it's a Sunday and I realise I will be on holiday and no one will be in the office! I know - 'cancer victim has holiday outrage'! I tweeted the journalist about the Jennifer Saunders' article  because there has, allegedly, been some sort of update and it is 'all about the context'. I asked to see the article, as it was in yesterday's paper, and she called me 'rude' (the journo, not JS). I am literally fuming now...revenge will be served chilly.   I also tweeted BCC about their plans for the 13th - they said they would update soon - crikey it's 4th Oct today - what a wash out. It would be nice if someone from BCC came onto this post and truthfully explained the situation. Oh well, ladies our skins - I'm sure - are already pretty thick, we'll just grow an extra layer and keep on keeping on.   A x ... View more

I actually tweeted Jennifer Saunders a few minutes ago to ask her how she was misquoted in her interview. I've always considered her to be an intelligent woman and am very cynical about her protestations. Today, on Lorraine a woman with secondaries (again, I never want to offend the participants) referred to herself as a breast cancer 'survivor' - as part of their donate a bra campaign.   Is it just me? Secondaries and survivor do not belong together. One could describe oneself as 'living with metastatic cancer/ secondaries'; but we can't label ourselves as survivors. I hate the word 'survivor' in this context, anyway. Today I found out that another young woman from the launch campaign has died. Today was her funeral. I am extremely angry with BCC - they have let us down and the fact that the only responses we have had have been so obviously cobbled together makes me sad and frustrated.   I've lost 5 friends to breast cancer. Of the original small group of friends I made on that first launch, I am the only one left. I feel hurt and alone. I am embarrassed by this year's offering. I've attended focus groups, been on the radio, modelled for one of the brochures, been a vocal campaigner and yet have not been contacted at all for over a year by BCC. My friend who has just died raised thousands of pounds for BCC. It is shameful.   An idea occurred to me that we should all march to the head office on the 13th...but it's a Sunday and no one will be there!   So disillusioned and seriously need to make a decision whether to be a member of this site any more.   Alison ... View more

Sorry, and just one last rant "there will be a call out-out for people to share their story". Um, when? Secondary breast cancer day is in 13 days and the day itself is a Sunday!! ... View more

Well, it sounds absolutely lame to me. Sorry, but it does. I notice one secondary lady on the "Body Confidence" video. Absolutely no disrespect to her (nor to anyone else who participates) - but she is referred to as a 'survivor' on your Twitter page. Surely secondary and survivor do not go hand in hand? How is this debunking the  confusion surrounding secondary breast cancer? If it wasn't for the helpful advice from fellow patients, I think I would seriously consider abandoning this site now.    It makes me very sad to think of several women - who are sadly no longer with us - who proudly put their faces and names to the first secondary campaign in 2010. It felt important.  I was there. I now feel sidelined.    I think BCC should be ashamed of this campaign, I know I am. ... View more

I renewed my DLA successfully this year. The forms came through in January (renewal date June) stating that they should be filled in immediately. I have visits from a palliative care team and the benefits advisor filled them in and sorted it all out. Had the confirmation about three weeks later. The system is changing, what differences will occur after the deadline date I'm not sure, although my nurse seemed to think it unlikely that 'special rules' people would be adversely affected. Alison ... View more

I sincerely hope that BCC will reconsider this campaign and let us know asap. As I have stated before, I participated in the first two Awareness Days at Parliament. It felt like something special was beginning, but no data seems to have been followed up. Last year there was the online campaign - forgive me for forgetting its title, where we wrote about what it was like to live day to day with secondaries, but it seemed to be fizzling out even then. One of the problems is that our lives are up and down; people die; we fall ill; we recover; some of us are lucky enough to be non-symptomatic. We are ALL different. At the beginning of this year, I thought my chips were down. If you saw me in the street today, you wouldn't know that anything was wrong with me. I am sure we all recognise that we also need to be recognised! In order to be recognised, we need to make people aware of what secondary breast cancer is. BCC focus on the more upbeat incurable but treatable line. I would argue that it is incurable with some people hopefully living longer due to research and new drugs being made available. Then there's the postcode lottery. My consultant tells me that there is a massive financial deficit at my hospital, which means that certain drugs are not available to patients. Drugs that could help me! I live in central London. My goodness, come on BCC, get passionate about us - we may not be the most reliable group (due to our various complaints), but we care about ourselves and all the other people who have secondary breast cancer. Help us make a difference, I would rather BCC did nothing than continue with this campaign. It's insulting our intelligence in a grave way. ... View more

For anyone who's interested. This is the interview i did with Jenni Murray for Woman's Hour, first item on programme x http://www.bbc.co.uk/programmes/b016x22t ... View more

Lemongrove, I will need to look into the situation that you highlighted. I will definitely write to the producer of Woman's Hour, I still have e-mails from them. I'm not sure that they would want the same person speaking again, but there may be others who would like to share their views. I'm actually taking part in a focus group at UCLH on Monday to discuss how they take forward their support programmes and groups. That's something. Alison ... View more

Belinda, I was interviewed by Jenni Murray on Woman's Hour two years ago on the subject of receiving a secondary diagnosis. This was organised by BCC. What I found really disheartening afterwards was that there was no mention of it on their FaceBook page, not sure it was highlighted on the website, either - certainly not with links. It's still on the BBC website...I felt really disappointed. So often we miss these items (all media), due to lack of awareness they exist. I did post it on the forums, but it made more of whimper than the 'shout' I wanted. Jenni Murray, having had breast cancer, should be a sympathetic to the cause - she was certainly 'on side' during my interview. Her producer should be approached again...with some gusto. Or maybe I should write to her and ask if she would consider doing another feature... Alison ... View more

My concern is that if a specialised organisation such as BCC don't know how to represent us, what hope do we have? I participated in the first two campaigns at Westminster and I think about some of the women who took part who are no longer with us, I feel we are letting them down if we don't protest strongly about this 'Body Confidence' campaign. My feelings are this: we may not personally benefit from the campaigns we participate in, but we are paving the way and providing a legacy for people in the future. I find BCC's response to our concern rather insulting, I feel they are tarnishing their reputation by not listening to our voices. Alison ... View more

Hear, hear! ... View more

Sophie, thank you for your response, however I still feel that this campaign is widely off the mark. I think we all understand how difficult it is to 'sell' our type of stories to the media, but giving an impression of secondary patients bravely soldiering on gives a false impression of what it is like to have metastatic cancer. Most of us are just ordinary people who are trying to live our lives under extraordinarily difficult conditions. I still believe that most people don't understand what a secondary cancer is, unless it has touched their lives. I bet that if you did a poll outside your offices, many people would not be aware of what secondaries mean. Surely this is one of the issues that still needs addressing as well as the sad fact that around 12,000 people are still dying from breast cancer EVERY year. I know statistics are blurry with regard to how many people are actually living with secondary breast cancer, but I do wonder what percentage of patients do go on to develop secondaries. How does 'Body Confidence' represent us to a wider audience, how is that helping us? Really? Alison ... View more

Let's keep bumping this up. It would be great if all us secondaries lot could give their point of view. Feeling more and more distanced from BCC, which is such a shame. Also feeling more and more marginalised. Who on earth thought that this topic would be beneficial? ... View more

Andie, I simply couldn't pass this by. What terribly sad news. Wishing you peace and love with your family and friends. Alison ... View more

I agree. Very strange choice. Who is this aimed at? Those of us with secondaries, or wider awareness of what living with secondary breast cancer entails? Not to say I haven't had issues along the way but, really, body confidence comes very low down on the list, faced with one's own mortality. Feel quite annoyed about this, in fact! Shows a deep lack of understanding about the issues we face. Alison ... View more

I was talking about Sharon today. I couldn't remember the exact day she passed away. It was the beginning of a down turn in my health and since her Facebook page was shut down, I had no one to contact. I miss you Shaz. I like to think that you are spurring me on. Our friendship was brief, but we had some laughs. She got given some money by a Naval superior and treated me to lunch at Claridge's, just one example of her immense generosity. Thinking of you. God bless. Alison x ... View more