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The Unsurvivors

37 REPLIES 37
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Member

Re: The Unsurvivors

Agree with all the comments re use of unsurvivors as being inappropriate and upsetting to be part of a campaign that is supposed to lend support and understanding to what SBC feels like. Going through primary is tough but not being listened to or monitored closely is another issue. I don't think it is acceptable that the proffessionals in the field don't look for signs of SBC and don't listen to patients. To add to this already difficult time we now have this unwanted label that was agreed with a small sample group , would be interesting to see if anyone in this supportive forum was involved in the choice of label ! It is distressing for us all just feel it's yet another let down . Liz

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Member

Re: The Unsurvivors

Hi Everyone,

 

Paul from Breast Cancer Now here.

 

Please accept my apologies for not getting back to everybody after my message on Thursday.

 

And apologies too for the multiple posts earlier. We suffered a few technical glitches, which should now have been fixed.

 

Thank you to everyone who has responded to Mia's post.

 

A clear learning for us from this campaign is that we need to make the most of the experience and insight that the members of this forum have.

 

This is intended to be a long running campaign, with us looking in more detail at a number of specific issues faced by people living with secondary breast cancer. We’re beginning to plan the next phase of the campaign now and will ensure we ask forum members for their input during this process.

 

Thank you again for everybody’s feedback.

 

Paul

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Member

Re: The Unsurvivors

Across so many issues we know people with secondary breast cancer feel forgotten and ignored, and that their experiences are not understood.

This was from a paragraph written by hannah(Breast Care Now)

Maybe this paragraph should have been read out aloud before you came up with THE UNSURVIVORS.

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Community Champion

Re: The Unsurvivors

Mia,

Thank you for the response.  I take it as given that your team have a relevant type and level of education one would expect of  Public Relations or Charity professional employees therefore I am surprised  that your team have failed to harness the huge amount of freely available expertise available on this forum.

 

Although not quite as spectacular as the Susan Boyle PR disaster:

https://www.telegraph.co.uk/women/womens-life/9698831/Twitter-hashtag-PR-disaster-Susanalbumparty-Id...

 

Nevertheless the team have caused upset and grief and ought to have known better. I have been a "flack catcher" myself in a previous capacity  and I learned rather quickly to avail myself of bone fide resources such as this forum could provide.  Free, gratis and for nothing.

 

We will get a couple more placatary responses but you will get the gift of experience of how not to do something.

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Member

Re: The Unsurvivors

Hello Mia/Campaigns Team/BCN,

Thank you for the eventual written response. I know you had initial difficulty creating a single post. However, your response is now showing as a number of full as well as broken posts. I have counted 7 at the current time. Jokes about buses aside, just retaining the first full response would be advisable.

 

Shi has also re-emphasised a very important point. A reminder to all you people at the main office not to overlook the use of the forum and it's members. It would seem that this was overlooked during your amalgamation and that some of you were not aware of it's public nature or how it operates. 

 

As I have stated previously, I do not have secondary breast cancer at the current time but I am very much aware of the future likelihood and it's implications.  I have no issue with the 'hard hitting' nature of the campaign, including deaths from breast cancer. That is factual. As stated to you before, I have an issue with your Campaign name. "Unsurvivor" to me means dead.  Use it to highlight the number of people who have died/that people die from breast cancer.  But if your campaign is also for those living with secondary breast cancer, then for goodness sake change it. 

 

The fact that this title is ambiguous and needs to be explained and justified would indicate it is not fit for purpose in my opinion. The title "breast cancer survivor" that it plays upon, is itself ambiguous and used in a variety of ways. For example, if NED after treatment, a badge to wear after 5 years clear, or from the day of diagnosis until you die (which includes people with SBC!) or even (from your interpretation) one you lose when recurrence strikes.

 

I wish the campaign itself well and that it respectfully fulfills it's aims.   However, by choosing this name "Unsurvivors", you have ended up alienating the very people you are claiming to support. In my opinion, the collateral damage was unnecessary and unacceptable.

Regards, 

Chick. 

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Community Champion

Re: The Unsurvivors

Hi Mia, thank you for your very long and rather involved response. It took some wading through, I can tell you. Although I appreciate the sentiments behind the campaign I’m with Walsh on this. Im very surprised such a small number of people was surveyed to extrapolate such a huge a media campaign. Surprised and , yes, horrified that SBC people would actually approve of this title. Still hate the name, still turned off by it, will not, I repeat, will not identify with this name. Shi, thank you for reinforcing the expertise and professionalism available from the forum community. Let’s hope it’s used in the future. Annie x

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Community Champion
Community Champion

Re: The Unsurvivors

Mia, I think you and the Breast Cancer Now Team know to please consult the forum going forward and get feedback from forum users too, it has caused a lot of hurt and upset and there are amazing voices on here that can really help Breast Cancer Now with what you are striving for, for all of us, Primary and Secondries. Thank you Shi.

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Member

Re: The Unsurvivors

Good Morning

 

Breast Care Now and the concept of the Campaign isn’t an issue for me. It’s simply the name. 

 

In my opinion, and many others i’m sure, 29 people (plus another small group) just doesn’t sound like a great volume of people to obtain feedback from before a decision was made on something that could upset so many people going through this. This forum alone would have generated a far higher interest and response - which i know would confirm the things being said throughout this thread. 

 

Many of us try our best to flip the negatives of our diagnosis into something positive ie. we are living with cancer - not dying from it. The name ‘The Unsurvivors’ is therefore a name that we find upsetting and negative. We understand that in a campaign like this the name needs to show the hardest side of breast cancer, but we do feel very strongly that a less upsetting alternative could have been suggested/agreed. 

 

 

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Re: The Unsurvivors

I have been following this thread and can understand the hurt that has been caused by those with a secondary diagnosis. I am one year on from treatment for breast cancer and live daily with the thought that it is possible that  the disease could progress, maybe in the next months or even many years in the future. Whilst I commend you reasoning behind the campaign I do feel the choice of words was inadvisable. If I was a secondary lady or man it would effect my mental state. Perhaps Incurables would have been better, accurate but not making people feel that they were already written off. I understand the need for action but perhaps this issue could have been handled with more sensitivity for those living with the disease on a daily basis. Despite this I obviously wish you well with the campaign and hope improvements can be made in treatment for everyone as soon as possible.

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Member

Re: The Unsurvivors

Hi Everyone,


Just to introduce myself, my name is Mia and I lead the Policy and Influencing team at Breast Cancer Now. (I’m replying in Paul’s name as I don’t have my own forum account)


We’re really sorry for the delay in replying in full – we had hoped to get something up on Friday evening, but this unfortunately just wasn’t possible – please accept our sincere apologies. We are really grateful for everyone’s honest feedback and comments, and wanted to ensure that our response acknowledged and answered as many of the questions/concerns below as we could.


I’ll try to avoid repeating what Hannah has said in her response to the other thread, but I would like to start by offering our sincere apologies again for any upset or offense the name of the campaign has caused, and to say that if anyone would like to discuss this with us in more detail, we would be really happy to call you. My email address is below if you want to get in touch.


I’ll first explain in a bit more detail why we developed and chose the name ‘Unsurvivors’ and then I’ll talk about how we tested the campaign.


We feel passionately that we need to change the perception that everyone survives breast cancer, or that all breast cancers are survivable, as we feel it has stalled progress for too many years in the care and support people with secondary breast cancer receive.


Our long-term ambition as a charity is to ensure that everyone diagnosed with breast cancer is able to live and live well, but we need to see progress for those living with incurable breast cancer right now. While some can live for years with secondary breast cancer, there are critical gaps in care across the country and there has been little progress for over a decade despite years of campaigning.


Despite so many years of calling for everyone to have access to a clinical nurse specialist that’s still far from the case; despite calling for a decade for the number of people diagnosed with secondary to be counted by hospitals so that services can be planned, it’s still not happening. Despite calling for years for systemic change, we still have to campaign for access to individual drugs for people with secondary breast cancer. Across so many issues we know people with secondary breast cancer feel forgotten and ignored, and that their experiences are not understood.


If we want to see change, we need to get across to decision-makers that secondary breast cancer represents a major group of patients that will be on treatment for life and will not be ‘cancer-free’. That those who die are not ‘failing’ or ‘losing a battle’. Their disease is currently incurable and while they survive each day and live full, precious and rewarding lives each week and month as best they can, if UK governments took action and made changes to the health system, we could enable everyone to live well for as long as possible.


The phrase ‘unsurvivors’ is not a label to describe how people are living their lives ― it is a term to get across that, for some, there is currently no ‘curing’ their breast cancer and that we urgently need to do much more to support them to live well for as long as possible.


The term ‘survivor’ is used frequently to refer to people who have finished treatment for primary breast cancer, and the campaign aims to get across that unfortunately not everyone can become ‘cancer free’, through no fault of their own. We simply haven’t yet found or developed enough effective treatment options to treat the disease once it has spread.

 

Through funding world-class research and delivering specialist support services, we are doing everything we can to try to help people live and live well for longer – and to bring more hope. But we have to try to tackle this misconception that everyone survives breast cancer, as it is key to achieving change for secondary breast cancer patients.


As difficult as it is, we as a charity need to talk about the fact that an estimated 35,000 people are living with breast cancer that cannot be cured, and that around 11,500 still die from the disease every year in the UK.


In terms of the testing we did, we developed a short online survey to test the campaign concept (including name, key messaging and visuals) alongside two other concepts with our secondary breast cancer campaign group. This was a diverse group made up of 29 women from across the UK – of different ages, ethnicities, ages at diagnosis, types of diagnosis (de novo or following treatment for primary breast cancer) and time living with secondary. We also tested the name with a small sample of people with an experience of primary breast cancer.


While there was no clear preference for any one name, our testing showed that the concept, messaging and visuals of The Unsurvivors was the overall preferred route. We then worked with the secondary breast cancer campaign group to discuss the delivery of the campaign concept and incorporate their feedback into the final campaign content. We discussed the benefits and risks of the concept at length with the group, and collectively there was a real sense of feeling that we needed to talk about the hardest side of breast cancer: that it is incurable and that so many people still die from it. It is not a decision that we took lightly, but it is a campaign that we feel we need to run if we are to finally see a step-change in diagnosis, care and support for everyone with secondary breast cancer.


I hope this goes some way to explaining the rationale behind the campaign name and gives you some insight into how and who we tested it with.


We know that such a bold and unconventional phrase may be difficult to read, and we are so sorry that it has caused distress. This will be a long-term campaign and throughout the next year we intend to highlight that people can live for years after a diagnosis of secondary breast cancer. But currently too many are missing out on the support they need to live well for longer and this has to change. We need to ensure that those with the power to act take notice and take action.


As I said above, I would be more than happy to answer any further questions anyone has – please feel free to email me at Mia.Rosenblatt@breastcancernow.org


Very best wishes,
Mia

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Re: The Unsurvivors

Hi Pinky3

 

I'm sorry you've not had a response. if you would be happy to let me know who you contacted about the campaign and the email address it came from I will look into this. We’re not aware of this email in the campaigns team so want to track it down so we can respond to you.  You can email me at mia.rosenblatt@breastcancernow.org 

 

thanks

Mia

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Member

Re: The Unsurvivors

Hello all, 

For what it is worth, I have sent another email to Mia detailing disappointment over Paul's /BCN lack of promised response and respect. 

 

I do not have direct email contact for Paul, otherwise would have obviously sent to him.

Regards to all, 

Chick 🐥 xx

 

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Re: The Unsurvivors

I loathe The Unsurvivors too. The reality is we're all survivors until we die. Regardless of what gets us in the end! 

There are so many less hurtful terms that could've been chosen:

 

Primary Cancer Survivor ( PCM) and Secondary Cancer Survivor. (SCS)

 

Or Primary Survivor and Mets Survivor?

 

I would hope that future research would be a bit more thorough!

 

 

 

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Member

Re: The Unsurvivors

I felt the need to add to this thread.

I do not have metastatic breast cancer. However I know someone who does and she is horrified by the term.  I emailed breast cancer now to tell them how we felt about the term 'the unsurvivors'.  This was a couple of weeks ago.

I have had zero response, no acknowledgement or explanation!!!!!!

 

To say we are disappointed is an understatement. 

 

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Re: The Unsurvivors

,hi all

 disappointment is an understatement,the team knew that these two threads where on going,THE UNSURVIVORS and IS IT JUST ME Breast Care Now just need to address  that disgusting,negative,no hope heading THE UNSURVIVORS,

With All the responses that have been on the two threads maybe now they have realised what a huge mistake they have made,hence the reason they have not responded when they said they would,we can only hope.

Sometimes in life you shrug your shoulders and say it does not matter,but I’m afraid for me not this time,I would like answers.How on earth does THE UNSURVIVORS describe those living with Metastatic Breast Cancer.Being strong throughout gruelling treatments,listening to Onocoligist with good news and bad,having to have scans to see what lies ahead for us,and everything else that we have to endure.

So please have some respect BREAST CARE NOW we are SURVIVING,with the set of cards that we have been dealt with.

Love to all xxxxx

 

 

 

 

 

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Member

Re: The Unsurvivors

Hello Paul/BCN

I agree with Walsh. Don't give a timeline for a response and then overlook it. You could have shown a bit of  respect to the people here by saying why no response was forthcoming.

Has it really got BCN in such a pickle that you don't know how to respond or are the people's views on this forum so unimportant that it's ok not to bother meeting a deadline? I really thought after my phone call with Mia, BCN were going to act promptly out of respect for people. Shame on you BCN.

Regards, 

Chick 🐥 x

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Member

Re: The Unsurvivors

What happened to your response,don’t say you will be posting a full response then don’t bother.

We Secondary ladies and men await.

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Community Champion

Re: The Unsurvivors

I just want to add my opinion on the dreadful choice of words.

 

If you don't have any ideas in your office for suitable words/language/terminology a sensible idea might have been to ask on here.

 

Whomever is in charge is likely well paid and I expect very "market" savvy but they have not one jot of common sense or compassion.

 

Incidentally, I don't like the new name of Breast Cancer Now but it does not offend or upset me.

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Member

Re: The Unsurvivors

Thank you Paul. 

Regards, 

Chick

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Member

Re: The Unsurvivors

Hi Everyone,

 

My name’s Paul and I work in the Campaigns team at Breast Cancer Now.

 

Thanks Chick1 for getting in touch about this thread and bringing it to our attention – and thank you to everyone else for sharing your thoughts and feedback here. I’m really sorry we haven’t replied sooner.

 

I just wanted to quickly let everyone know I will be posting a full response tomorrow.

 

Apologies again for time it’s taken to respond.

 

Paul

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Member

Re: The Unsurvivors

Hello all, 

Just a quick update. I have just had a long phone call with Mia from BCN. Mia was involved directly in the campaign.  The intention was obviously not to cause upset. There will hopefully be a response today/very soon from Mia/BCN.  Sorry for the short reply but I need to go and catch a bus!

Best wishes to all,

Chick 🐥 x

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Re: The Unsurvivors

To acknowledge this would be the decent thing to do.

But again thank you,for your help with links,I am not very good

with the computers.I try not to let it get to me but must admit 

the word is a terrible reminder.

xxxx thank you much appreciated.xxx

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Member

Re: The Unsurvivors

Love and hugs to you as well Walsh.  Try not to let such an oversight bring you down.

 

I just sent another email to BCN with an example of a post for illustration and  direct links to the two relevant threads you started, so there is no difficulty for BCN staff to locate them.  It would be nice if someone made a public acknowledgement even if just to say they are looking into it. 

Anyway, all the best to you Walsh, 

Chick 🐥 x

 

 

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Member

Re: The Unsurvivors

Big thank you chick for doing this.At the moment to angry to even speak to anybody representing breast care now.

They need to change that  Word,plenty of other words to choose from,that will get everybody talking about this awful disease,and making them aware of the impact that this disease brings.and everything that the campaign is trying to put over to the general public.I feel that now there is no hope,because of how  awful that word describes us.

As hard as it is I felt I was doing okay,being as positive as I could be when I was diagnosed,but  now the people who are meant to be a shoulder to”lean on and understand us with secondary Breast Cancer could come up with such a word without a thought for those who are suffering everyday,with it Surely had they thought it over this word should never have been used.

love and hugs to all 

who are coping with this disease.

xxx

 

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Member

Re: The Unsurvivors

Hello all, 

Just a little update for any interested parties. I sent email to Hannah. Unfortunately she is not available until 11th November. I forwarded email to a colleague, Mia, that Hannah had left contact details for. Mia promptly responded to say she would look into things and also said to ring her if I wanted. I did ring, but unfortunately had missed her so left message on answerphone reiterating main point of email and asking that a representative from BCN could easily respond on the thread.

Regards, 

Chick x 🐥 

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Community Champion

Re: The Unsurvivors

Chick - I can't believe that Macmillan still keep rolling out Brave the Shave - it causes so much upset every year - voiced very strongly on their site .

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Member

Re: The Unsurvivors

Hello all, 

 

The response from HannahM from BCN on the "Is it Just Me" thread also by Walsh, does explain about the campaign in detail. The  campaign itself is a very good thing in my opinion (which is not under dispute) and  is based on the survey responses of people with SBC. I am glad of any campaign that may improve the way forward for people with SBC.  I may not have a duagnosis of SBC at the current time but I am very much aware of the future likelihood. 

 

  I thought the campaign was about living with SBC as well as informing that people die from it. I suppose a title like "Secondary Lives" would not be as punchy (even with the intended pun).  Anyway, there is a brief apology from Hannah if the title "The Unsurvivors" has caused upset and that this was not the intention. This was after AnnieJ had negatively commented on the title within that thread. 

 

Anyway for what it is worth, as Hannah has given her email for queries, I have sent email with my views and a request for an explanation of how and why this title was arrived at. I have requested that this be responded to on this thread, as well as suggesting explaining on the main site or even emailing members. 

Regards to all, 

Chick 🐥 x

PS Jill - don't even start me on Brave The Shave.... X

 

 

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Community Champion
Community Champion

Re: The Unsurvivors

Please put your complaints in directly, the fact the forum members were not consulted is a big oversight and as the team have put below apologise but please contact the mods/ breast cancer now team directly, there are clearly more stories to be told. ❤️Shi xx

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Member

Re: The Unsurvivors

Hi there,

just wanted to let you know there is anothe4 thread IS IT jUST ME.Same thoughts as yourself,I started the thread,as I was absolutely disgusting and still am at the insensitivity of the Breast Care Awarness  group how on earth did they not take into account of all of us who are suffering mentally and physically from this awful  disease but are doing there best to survive everyday.The word they have come up with I do not say.This word does not and will not apply to me EVER.

Yes there is a response.But in the English Dictionary there are better words to discribe Us,this word they have come up with is not in the English Dictionary.Shame on Breast Care COMMITTEE.

I WILL CONTINUE MY BEST EVERYDAY EVEN WHEN THINGS DONT GO THE WAY WE WANT IT,I KNOW I WILL NOT SURVIVE BUT I AM A SURVIVOR.

We need to get rid of this horrible disgusting word that does not discribe us.

take care all.xxxx

 

 

 

 

 

 

 

 

 

 

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Community Champion

Re: The Unsurvivors

There is a response from BCN on this thread .https://forum.breastcancernow.org/t5/Living-with-secondary-breast/Is-it-just-me/td-p/1305715

Reminds me of the upset that the Macmillan Brave the shave campaign causes each year - really touches nerves and distress people .

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Member

Re: The Unsurvivors

Hi ladies

I haven't got SBC but felt I needed to add my voice to yours in that I find it incredibly crass and insensitive to see the title 'Unsurvivors' WTF you are ALL survivors, you are living the best you can, if you was an unsurvivor you wouldn't be here. I cannot understand why a charity fighting for and supporting people with breast cancer would label some 'unsurvivors'.😡

Joemic x

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Member

Re: The Unsurvivors

Hi, I haven't posted for ages as I have not been well as had a virus. I just want to add how I incensed I am at being called an unsurvivor. How insulting that is to all of us living with SBC and doing our best to live normal lives. I too would like an explanation of why this title was chosen for us as whoever made that decision does not have a clue what living with this is like.

sorry for the rant but this has left me fuming. We have to live with enough without this insensitivity.

Kaz x

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Member

Re: The Unsurvivors

Hello all, 

Just posted on another thread about  this "unsurvivor" label.  I do not understand how an Organisation like BCN would think this term acceptable and appropriate.  Please can someone from BCN explain the rationale and why you agreed on this new term that surely means "not surviving". Was it an advertising agency that dreamed up the campaign label? Did you ask any opinions from people living with secondary breast cancer etc? 

Regards, 

Chick 🐥 x

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Member

Re: The Unsurvivors

What the hell made you call us this appalling name. I am not dead, DO NOT LABEL ME WITH THIS NAME. You can't understand how upsetting it is.
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Member

Re: The Unsurvivors

It’s a message.

for too long we have all been expected to face up to cancer as a ‘journey’.

its a small word for a huge heap of differing conditions and outcomes.

we aren’t survivors and it’s not cos we’re not big enough or brave to bounce back.

cancer is not the worst thing that’s happened to me but never having the chance of a cure is...

 

 

Member

Re: The Unsurvivors

Absolutely agree! My mom cried when she saw this. We have spent so much time getting her into the mind frame that she is living with breast cancer not waiting to die from it, this undid that on sight.

 

Breast Cancer Now you have shown very little regard for the people living with SBC and SURVIVING their prognosis. While i am thankful your shining a light on this,  you should be ashamed of the way you have gone about it with no regard to the group your talking about.

 

 

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Member

Re: The Unsurvivors

Hi 

I understand the need to use emotive language as it garners interest and hopefully then action. BUT would like to ask the campaign organisers if there was any discussion with met bc people and what their thinking behind this campaign title is. 
My first and gut reaction to this name is that it shows no regard to those who will now feel they bare the title ‘unsurvivor’. 
Perhaps someone else has a more positive view point?? 
xx

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Member

The Unsurvivors

Hi Absolutely hate the name,

What is the Breast Cancer Now thinking of.

The name The Unsurvivors is very distressful,it’s a very Negative name to be using when we are living in hope that one day there will be a cure,but you have written us off.

We live with this awful disease every single day,soon as we open our eyes in the morning the first thing that comes into our minds now is We are not going to survive,thanks for the reminder.

You have stigmatised us.

I think there should have been a couple of names put to us Secondary Ladies and men,before using this horrible name.

Metastatic Breast Cancer Now?

I know the campaign is to hit hard,but you have to think about who you are trying to aim the campaign at.

Breast Cancer Now, is FEAR and HOPE.

UNSURVIVORS FEAR AND NO HOPE you may as well put that in you campaign.