Topic: Take the Fright Out of Breast Cancer™

Sep 16, 2017 08:30PM shepkitty wrote:

Oh yes Mari! Those awful sports bras that are way tooo tight and squish and contort the flesh in painful awkward ways... and make it look you have breasts on your back or like you are smuggling lumpy mashed potatoes... or both!

Sep 16, 2017 08:41PM - edited Sep 16, 2017 08:46PM by Sara536

Shepkitty, I never thought for a minute that BCO produced that shirt. My point is that by starting a campaign connecting breast cancer to Halloween and fright, they opened an ugly can of worms. It immediately shocked many of us that they didn't have the forsight to see where that would lead. When the contributers to this thread tried to warn them, they became very defensive, apparently because they truly didn't get it, or the dollar signs in their eyeballs blinded them.

Sep 16, 2017 08:48PM nihahi wrote:

"Breasts of Death"...pretty much sums up the danger and insensitivity of connecting a breast cancer fundraiser with Halloween.

The mods say that the tie-in is to remove the fear factor. RUBBISH! The consequence is making a mockery and a laugh out of a disease that causes pain and distress to millions.

Sep 16, 2017 11:04PM - edited Sep 16, 2017 11:06PM by shepkitty

Hmmm....The Mammo Mash?

I'll write it and then we can wear the Breasts of Death shirts and make a viral video!

Sep 17, 2017 02:24AM - edited Sep 17, 2017 02:34AM by shepkitty

I still have an awesome skeleton mask of my son's somewhere. I think it even glows in the dark! I like the head scarf idea but I think the color red is used to designate a group of hemophiliacs. We are all crippled by this horrid disease - maybe the disabled group that uses the color blue wouldn't mind us using it too?

Still working on the Mammo Mash.... I actually got to see Bobby Pickett perform his Monster Mash in the late 80's in Boston. He put on a great show and seemed to really be enjoying himself. Sadly, he passed away from leukemia in 2007.

Just looked up the leukemia ribbon - it's orange! This is really getting mucked up. Why isn't October leukemia month? Do you think those folks are mad about the pink crud too? Us BC people don't want the pinktober. Maybe we can just give the whole dang "celebration" to them? Who would we call?

Mari - we should probably wear orange head scarves in our video so as not to offend.

Sep 17, 2017 05:26AM gb2115 wrote:

Lol, "be afraid, be very afraid." So true.

I think bc awareness month should be done away with because everyone is aware, to the point where the general public seems to believe bc is no big deal, where in reality even an early stage diagnosis is nothing short of devastating. People think my bc is no big deal because I didn't get a mastectomy--there is no concept of the personal hell we all go through, which early detection doesn't prevent.

Instead there should be fundraising for "wire localization awareness" because there has to be a better way. That was the worst moment of my life to date. Sorry, but fundraising needs to go to better anesthesia for things like that... making sedation available if needed. You're going to knock me out to surgery anyway, why did I have to be awake for that, having a giant painful hematoma put into a mammogram before getting the lidocaine. How about making mammograms with surgical/radiation scar tissue less painful. You know if this were about testicles...things would be very different. If we can't figure out what causes the cancer, which hinders prevention, how about focusing on quality of life for those diagnosed.

Sep 17, 2017 06:35AM badger wrote:

hi, IMHO if you want to take the fright out of breast cancer, find a cure.

Hold the event on National MBC Awareness Day with all proceeds to research.

Metastatic breast cancer is what kills. All of us are at risk for the rest of our lives.

I've lost too many friends to MBC and won't breathe easy until we find a cure.

Sep 17, 2017 07:20AM badger wrote:

Suburbs, agree it is reminiscent of Prince Prospero's masquerade ball in "The Masque of the Red Death" by Edgar Allen Poe.

I just donated to BCO. Thanks Mods, members, and all behind the scenes of this site.

Sep 17, 2017 08:01AM marijen wrote:

How does BCO plan to redesign the site to make it better? And why is it such a very large project? It sounds like the Obamacare computer exchange system that ended up costing billions. Shouldn't that money be spent on research? What will happen to our privacy which is not so great to begin with. Will our information be tracked by the government? Will they attempt to connect it to our medical records and insurance companies? Will it be used for research? Will it be fed directly to outside sources? We need to know.

What is the need for a very large project to redesign the BCO site?

__________________________________________________________

Moderators said:

We clearly hear that everyone here in the topic does not like this funding campaign.

Because this campaign is far along, and was tested on a number of community members prior to launch, it is unrealistic, and not possible to completely get rid of it. Yes, we are having an event, and yes, we need to fundraise. We have a very large project underway to redesign the site to make it better for us all.

Sep 17, 2017 08:41AM - edited Sep 17, 2017 08:42AM by Outfield

How about:

- a ghoul with a caption "Don't trust a mammogram to save you from it"

- a disintegrating pink ribbon and a caption "more than 40,000 deaths a year, you SHOULD be scared"

Sorry, I just find the whole idea too offensive. No matter what you do, it ties a horrible disease to a fun Holiday.

I understand you're not going to cancel this year's events. But do you have to keep milking this TM of yours?

When I donate, which will be when I go back to work full-time, it will be in the names of my two good friends who have died. My two wonderful, funny friends who were the life of any party. My young friend and my older friend. My friend who died at home, and my friend who died in the hospital. My friend who left parents, and my friend who left a partner. My friend who was too young for a mammogram by any organization's recommendations, and my friend who worked in medicine and had them regularly.

You may be fundraising, but you are also abusing your position as an organization with some credibility to paint a picture of this disease as something trivial, something that can be "caught early" if women would just do the right thing and listen to the radiology organizations, something that won't happen to you if you take care of yourself.

Edited to add: I echo Marjen's question. Why do you need money to redesign this site? What are your goals there?

Sep 17, 2017 08:44AM - edited Sep 17, 2017 09:03AM by Tara17

hi ..I appreciate that it takes some resources to run a website . What makes this website an amazing source of support is the powerful personal testimonies of the men and women who have walked this path, sharing their stories and encouraging us. Without these men and women and their families affected by BC creating the community, this website would not exist. The mods do not create the community, it's the people here who have done so. The articles on BCO are so-so, they didn't help my research, the reconstruction articles seem sponsored by NOLA, why suze ormon is on the front page, I am not sure --BCO on that side is barely adequate, but the community here is amazing!! We certainly appreciate the work the mods do, but let's be clear, that the men and women who are the heart and soul of this community do not need to be made to feel guilty for not contributing dollars ! They are contributing something so much more, so priceless, their personal stories and testimonies and they have CREATED this community . BCO is a platform which would be meaningless and would not exist were it not for this community of people.

It seems clear that the mods don't plan to change their plan for Halloween gimmicky fundraising that is offending the very community that they are serving. It's disheartening to read the mods responses to this outpouring of sentiment ---very reasonable sentiment where people are not objecting to fundraising off their personal stories, only objecting to the timing and GIMMICKY nature of it. Thank you all for allowing me to express my opinion. Best wishes to all.

Sep 17, 2017 10:45AM mebmarj wrote:

What's done is done. We have voiced our displeasure and disappointment with the "campaign." The show will go on despite those passionate pleas to stop.

As more than one member has said in the past- no one 'gets it' until they get it. (Not that I would wish even a fraction of what I have personally experienced on anyone.) You couldn't pay anyone to do what some of us have had to endure along with how frightened we were because of breast cancer.

Our culture has become increasingly politically correct, yet we revert to humor when breasts are mentioned, even when followed by the word cancer. Save the tatas, or I ❤️ boobies are just a few I can think of at the moment. Anything like that for colon, bladder, lung, pancreatic or testicular cancer out there? Hmm? It's the social discomfort of talking about breasts and their perception in our culture- they feed babies, develop as one becomes a woman, attract a potential mate and for some impact a career in entertainment in various ways. And still we can't say breast without using slang or some silly euphemism.

Let's talk about breasts. Openly. Honestly. Give those body parts behind the cutesy pink ribbon the RESPECT that every other cancer is given. BOOM. Mic drop.

Perhaps BCO got caught between a rock and hard place when some marketing muckety muck from a high dollar sponsor took the ball and ran with it. Because of the dollar figures at stake-they can't admit that it was an error in judgement now. It started with good intentions at one point. So let them play dress up and have their cocktails to raise money. Perhaps some will think it's in bad taste and not attend- which will have an effect on the bottom line and perception of the organizations connected to the "campaign." Others will remain blissfully unaware. If statistics can prove anything- in hindsight one day some will 'get it' like we (our community) get it.

I have no kitschy slogan to offer. No suggestions for blingy bangles or baubles to hock. Being open and honest might not be enough to make donations roll in, but it's all I can offer.

Sep 17, 2017 12:30PM ShetlandPony wrote:

I do hope that BCO will read and consider well the constructive suggestions on this thread, even though there is a lot of understandable venting and a few off-topic posts here too.

When I was first diagnosed, BCO was a good source of information to get me oriented. I spent a lot of time reading on the main site. When my mets diagnosis came, BCO became a necessary lifeline of communication with others dealing with breast cancer. These things are worth keeping, and of course some funds are needed to do this. I looked at the Fright web site, and can see that the "Get the Facts" link has some good content. However, the Halloween party theme is totally inappropriate and may damage BCO's reputation. Obtaining the needed funds in the wrong way will not ultimately support the goals and success of BCO.

I understand that these ill-conceived events are not likely to be called off at this point. But perhaps they can be tweaked to be more respectful. BCO, imagine your mission is to serve another group such as war veterans. War is frightening. War is hell. Soldiers return wounded in body and spirit. A fund raising evening for support services for them would be a classy affair that didn't make light of the experience. Rather, you would praise the soldiers for their bravery and speak of their courage. You would talk about how their lives have or can be improved by certain services. Solidarity and embracing life would be themes. You would not make light of their experience with cute slogans, all the trappings of a celebration, and connecting it with a children's holiday. Well, breast cancer is frightening. Breast cancer is hell. People are wounded in body and spirit. Show some respect.

The slogan "Take the fright out" is problematic because it is not possible or realistic to take the fright out. The very suggestion shows a lack of understanding and feels dismissive or insulting to those who have fears about breast cancer -- which must be 99.9% of women and a good number of men, too. True courage is being afraid but doing what you need to do anyway. That is where your theme and slogan need to come from. Just a slight shift would make a difference. Don't tell people not to be afraid. That makes it look like you don't know much about breast cancer at all. Instead, tell people to have courage in spite of their justifiable fear, and that they have information and support available.

I don't understand what will be so terribly expensive about revamping the web site. You need a couple people to curate journal articles and a couple to write content, a couple good programmers, and some moderators. I witnessed first-hand a proposal for expensive programming work where the needed programming was promptly done without fanfare by a single, smart volunteer programmer, while the organization was still busy meeting with the people in suits. I also witnessed a super-expensive, major-philanthropist-funded programming project that ultimately failed because it was out of touch with the end users.

The vagueness of the description of proposed BCO changes worries me. First, it makes me think the changes will be presented as a done deal when it is too late for constructive feedback. Second, the "more personalized experience" language raises privacy red flags.

The irony here is that this misguided Fright campaign erodes trust and respect for BCO, as does the caginess about the plans for the money raised. So members and their friends and families will be less likely to offer help and less likely to donate. And the general public also is tiring of the pink party business. People can tell sponsors such as Nordstrom what they think of their involvement in inappropriate campaigns. So please, BCO, take the constructive suggestions seriously and everyone will be better off.

Sep 17, 2017 01:07PM Traveltext wrote:

Shetland, so we'll put. Of course, I'd hit a like button if I could. I've been awaiting a reply from mods for two months now to my questions on the site revamp, which was announced earlier in the year. Now, with this ill-conceived event being used as the site-fixing carrot for continuing with this campaign, I'm very pissed off. Simple coding changes that me and some mates could do on a weekend on a volunteer basis would improve this website. Attempting to high jack Halloween for these purposes is both absurd and disengenuous to this community, and it presents us to the world in a poor light.

Everywhere in business you'll find marketing plans being reassessed. Smart companies have a department for damage control. Instead of putting the fixing of this problem on to a community with enough stresses, get management together and come up with a plan to somehow reconfigure this campaign. It really will end poorly otherwise.

Sep 17, 2017 02:27PM dlb823 wrote:

Some great points, and very well expressed, Shetland. The war analogy is spot on, as is the observation about website designers. I hope BCO will take your comments especially to heart.