Take the Fright Out of Breast Cancer™

I think you have 490 posts of solid feedback, and no meaningful action was taken to adjust or modify what has to stick in history as one of most momentously ill thought campaigns for breast cancer from an organisation that writes and read about the lives of breast cancer patients each day.

A little too little, a little too late for me.

Nihahi post is excellent - i wonder if the concerns raised will be addressed.

Did we just get a pat on the head and a there there now. Next year will tell the tale as to wether we were listened to or heard. There is a big difference. If we were heard this campaign will not happen again. The bottom line did not have to be reached by such a crass campaign.

Sad to say the campaign made Instagram. Individuals posting their pictures using #takethefrightoutofbreastcancer and #takethefright out. Edited to add: And argh, BCO did put it on Instagram under breastcancerorg. Now I'm really shaking my head over this whole thing

Edited for spelling.

Mods,

I speak only for myself and bring this up because “The campaign” has been posted under raising funds for breast cancer.

I have seen no evidence that redesigning the current site is either a huge top priority necessity or that a new site would be a more user friendly platform.

In fact short of the “ integrating community into content” BCO has been given no outline of what are target areas of this redesign.

I guess what I am asking is:

Do you need to redesign this site?

Why does it have to be a major redesign?

Are the funds raised for Breast Cancer better spent elsewhere ?

To BCO Mods, I greatly respect all the work you guys do. This site has been invaluable to me. I did not take offense in the slightest, and as I pointed out (that no one ever touched when I asked if they were offended by her) Stage 4 women host a 'Mets'quarade ball every year to benefit cancer research. Having fun in the face of death is how many deal with things, and frankly I think Breast Cancer is a HELLUVA less frightening than it was 40 years ago.

I don't want to be thrown on the pyre of those offended minority voices shouting at the rooftops. I've received many PMs from women who are terrified to post on here and be exposed to this angry mob, but others feel as I do. Mods, you are doing great job.

I agree with Lisey too. I have an unpopular view, in that bCO is here for education, and camaraderie between diagnosed women. They are not political advocates, scientists looking for a cure, or many other things that people want them to be. And if everyone's always pissed off at BCO about how they do it, why they do it, why not start your own group, or go to Facebook, or start your own campaign to end it, fight it, or educate. I expect to be blasted for saying this, but you know, many women in other countries don't have the luxury to complain like some do here. First world problem. Go get busy.

I have always thought the same thing. Who am I to say what you campaign on? It's not my funds being spent, although I did donate a small amount. When I donated that money, I thought of all the wonderful relationships I have Made here and that wouldn't be possible without this site. I have actually met some of these BCO employees that honestly genuinely care about things in the breast cancer world and homelife and how it effects individuals and family. There are many days without this gift of a site, I don't know where I would have been. They are bending over backwords to hear what you have to say. They didn't create breast cancer, but they do provide a very open, very leinent place to express your feelings and thoughts. Here they are setting up an open forum to hear more concerns and complaints about where they spend their raised funds? Are you BCO's financial CEO, that you should request such a thing? I was a bit surprised about the demand to see where monies are spent, when you really have nothing to do with it whatsoever. You're a member of a free website, that they provide. If anything , you should be happy with any possible way any amount of money could be raised to help with BC Period! Wether it's a nice new website, or whatever else they decide to spend it on. All I can say is thank you BCO, I am a stage four woman, who uses this site not only for educational purposes, but for the invaluable friendships, that would not have been possible. Thank you also for including me in the discussions about the new website and how it may help the members find out more information they may need. I'm sure whatever you come up with, will be thought out and will help many many more women and even men, and families as they navigate this horror of a disease.

Micmel,

Your post is candid and I thank you for it.

The reality is that if you raise funds in the name of a community - in this case Breast Cancer - you have a responsability to administer those funds to the full benefit of that community.

For example if you raise money for the homeless - it should aid the homeless and not a surf club.

Transparency and intellectual ownershipare real items on the agenda of any CEO.

This was done when it was stated the funds were raised for overhauling the site.

I think the site works well - but I understand Traveltext comments on members walking away/not posting.

Will see if changing the way forums are posted deals with this.

(I understand Stage 4 closing their forums - not certain how being told to laugh at death by someone who is not Stage 4 would go down...)

"I don't want to be thrown on the pyre of those offended minority voices shouting at the rooftops. I've received many PMs from women who are terrified to post on here and be exposed to this angry mob, but others feel as I do. Mods, you are doing great job."

Lisey, are you for real using the term angry mob? This thread was started on Sept. 5 and discussions didn't start until Sept. 9 and I must say they were really rather tame. You didn't show up until Oct. 15 and your last postings were Oct. 19, until Nov. 7. Your postings came across as odd IMHO. I would hope that the many women who contacted you by PM also contacted the Mods, which would have gotten their message directly to the proper source. That a stage 4 woman hosts a Metsquerade Ball for metavivor is her prerogative as an individual. We are talking about an organization that should be very attuned to its members' feelings and what they have to go through with this disease. There is a big difference between the two. There is also a right way and a wrong way to do something in the name of doing good. All this group was asking for was for BCO to be sensitive.

Because I couldn't make the event, I'm looking forward to watching the video summary. However, I'm delighted to hear that the Fright campaign is to be discontinued and I look forward to having some input into site and content redevelopment.

I participated in the Zoom meeting online Wednesday and felt it was a good start to engaging the discussion board community in ongoing dialogue. I urge the moderators to start a new thread in the next few days to allow input into the website changes BCO is exploring, to allow this "hot" topic subject line to drop out of use. We were told this "fright" campaign will not return.

I feel it is important for BCO to discuss website changes with members BEFORE BCO even starts to propose and start changes internally, and allow the users of the discussion boards to discuss the need for change and give input to the techs as they develop options for changes. It would be great to preview several prototypes and make suggestions for better utilization before they are fully implemented. Many of us remember the "Outbrain" icons a year or two ago that appeared one day, and it took us months to finally have them removed from the threads. My understanding from this meeting is that techs are already working on changes in the full website including the content areas and the threads, but I hope we will have a chance to discuss before it gets too far--I'd rather we participate in the changes and not just be on the receiving end of completed changes. We briefly discussed an opt in/opt out feature to allow those of us who mainly use the discussion area and do not want links to content within the threads to enable a choice about content we see. Expressions that a refreshed website not be another facebook and remain simple and clean in appearance were also made.

I appreciated that Hope and Melissa provided the live chat room to allow us to talk with them and be heard, and that we were allowed to maintain our privacy if we chose by using our screen names and audio and not turning on the video option. Zoom was easy to use so don't let the technology discourage you from participating in the next live online discussion. The suggestion was made that future online discussions happen at different times of the day to enable those around the world to participate at an appropriate time for all.

Wednesday was a start, and I hope it helps to make BCO content and discussion more valuable for all in the BC community.

Looking forward to the discussion in the new thread and hope all join in!

Thanks. Ceanna

I agree with ceanna, let's get a new thread started to capitalise on the enthusiasm shown here for input to the new site. If the existing thread is to be closed for discussion, that's fine, but I hope it will be archived so that it can be read. There's very few times that I've witnessed such resistance to a new campaign here, and there are lessons to be learned.

I was sent a link to the video conference which I couldn't attend due to time zone differences and thought it was a useful communications exercise although, in future, some discussion topics could be lined up before the next one so that participants could prepare beforehand. It's hard often to think and respond while topics are randomly discussed.

Jensgotthis, thanks for pointing out the differences with the Metsquerade event, it's grassroots origins, and the differences between it and the fear/fright campaign.