Take the Fright Out of Breast Cancer™

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2017

    Some of the recent comments are exactly why I turn down requests from the Mods to "share my story". With each passing year, it becomes more and more obvious that bco "pimps out" the very personal experiences of its members, to assist in fundraising events. Sadly, and unethically in my opinion, that fundraising is tone deaf to the very people that bco likes to say it serves.

  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    Is anyone else getting their private email inbox at home flooded with announcements from the bco moderators every time someone posts on this thread? I removed this thread from my fav lists in hope of stopping that practice.

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2017

    No. It's probably some setting you've (inadvertently) ticked.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2017

    For some reason email notification was checked for several of my favorite topics. I don’t recollect checking that unless the default is now email notification. Hmmm.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    We actually care very much. We will be reevaluating this campaign. You're opinions are extremely important to us. We never intended to have this much upset.

  • kathindc
    kathindc Member Posts: 2,042
    edited October 2017

    Well, it took one month, two days of outcry from a small portion of the BCO community (just think of what it would have been if we posted about this thread on the ones we "live" on) before we got a weak "We will be reevaluating this campaign." It's a start but we won't know the truth until next year. Let's hope it isn't lip service. I, personally, am suspending my yearly contribution to BCO until after next Pinktober.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    This time each year many of us get upset at what happens with the presentation of our disease for awareness and fundraising purposes. I do see some incremental changes, but it's often one step forward and two steps back. I'd like it if BCO, with it's long history of grassroots participation, took the lea in reformulating public perceptions and attitudes with campaigns that were both honest and ethical.

    Nancy Stordahl puts it well:

    http://nancyspoint.com/its-time-for-breast-cancer-...


  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    moderators = get me off your email list for this thread. I've already removed it from my favorites, unchecked the box for email updates, and sent and email to tech support but the emails keep coming. HELP!! What else do I need to do?

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Magiclight - I have had the same problem.

    Unchecking did not help. Remove and replace from fav did not help. I had never clicked on a email message button because I do not want email notifications.

    I have had to demolish my fav list - and I am now just picking up from active thread, not using the fav option for any threads as it flooded my email box.

    I am waiting it out - I assume it is a site glitch and it will soon be fixed.

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Another great post Traveltext


  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Mods - in my experience beside the four practical things I listed a while back ( money, time, access, knowledge/information) there are two others that I, and women I work with, NEED going through diagnosis and treatment and follow up ( ...no matter how long that ends up taking):

    1. One is finding a Voice - to tell your family, to ask for help, to not tell No to those who intrude, to manage work schedules and still have a job to return to, to advocate in oncology offices, to ask for tests... a voice that is loud and clear and VALIDATED.

    ( I used to play Jennifer Lopez - Lets get loud - each to their own, I know - she has a comment as it wraps up " you didn't know I could do that, did you?" Yep, I know it refers to her butt but it worked for me)

    I found support for my voice in this Community - I came here so I could speak when I got out the door.

    2. The second is HELP holding on their LIFE - that tree of life, with its roots transformed by medical treatments, the people/networks/facilities supporting our trunk us as we navigate/endure this disease, with branches still willing to take joy, to bloom, despite what dangles on them - it's our life after we have been poisoned and pruned.

    It's sounds a little too fairy - no, the questions dangling from the branches could not be more earthy, they are borne out of the dirt:

    - where do I file my insurance?

    - where do I get mepitel?

    - how much lomotil do I take?

    - what anxiety medication will not make me sleepy?

    - what options are available for me to work part time?

    - when can I drive and not drive?

    - what else can I take for pain besides nonsteroidal anti-inflammatories and opioids?

    - how much is a consult with a integrative oncologist?

    - how do access a trial? In the mist of hundreds being listed on sites....

    You want to inform and support women and men with breast cancer - BUILD a strong tree. 😊


  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    wildplaces...thanks re: email glitches. I'll wait a bit and see what happens/

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    That is strange that you cannot remove this from favorites. We haven't heard this until now. We'll certainly take a look!


  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    I can remove it from favourites.

    I have been flooded with email notifications for post on my favourites list that I did not request - by clicking on the request email link...so I then clicked and unclicked everything - did not work.

    The only way to Not flood my email box was to undo the fav list - i delete my fav list.

    I added only fav again " shadow in chest is a recurrence" I still get the unsolicited email on posts - but it's a few rather then tens of...

    I believe same thing as magiclight...😊

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Wildplaces, you are saying that "add email notification" or "remove email notification isn't working, and you need to "Remove from My Favorite Topics"? Have you gone under "My Favorite Topics" to click or unclick? See below.


    image

    image

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Let's see if this get an email...

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Mods - yes I did, and it not work but seems fixed now.

    Thank you, I will pop my few fav back. 😊🌷without the email notification


  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    So glad it works now!

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    On another note, Wildplaces, you bring up many good ideas above. We do have a huge amount of content that covers many of you suggestions (http://www.breastcancer.org). Because our community is so separate from our editorial content, much of the is content is never seen. Also, our editorial content area is indeed so full, that it is difficult to find what you need without our Search box. We are working to make it easier to find what you need (improve the navigation). Also, we keep a running list of topics to cover, so appreciate everyone's suggestions.

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited October 2017

    Wildplaces, I'm with you that an impactful marketing campaign should reflect what an organization does. I used (earlier) the analogy that BCO is a bridge over troubled waters. So, we have a similar viewpoint. Make a campaign that shows WHAT YOU DO!!

    And it cannot be said enough: you cannot remove the fright at any level - not until there is a cure. My distaste (putting it mildly) is not just the cutesy styling (which is honestly just embarrassing), but any assertion that fright CAN be removed. It can't and won't and SHOULD NOT be removed. It's a completely inaccurate and misguided handle.

    If I were a corporate sponsor, I'd be more impacted by the harsh realities, the fact that Fear is a constant companion for millions of people, that this site is that tree, that bridge over troubled waters. ACKNOWLEDGE. Don't pretend that you are the magical fairy that can wave its wand and remove the fear, Mods.

    Honestly, I'm just completely stunned. I know your ball is in motion, but it's wrong, it's insulting to the breast cancer movement, it's belittling to the good that you do. Look within this upset here: you have literally been handed your new campaign through all of this. No better marketing research exists. No marketing consultant necessary. The right basis for branding is right here on this thread.

    And if the above objective reasoning doesn't mean much to you, I will for once in this thread get personal. Never has any thread in the history of all discussion boards I've ever followed affected me like this. I feel like crying when I see what you've created. I feel like crying on behalf of all those women (and some men) who are going to have imaging done this week and hear it's not just a cyst.

    I just share that with you because I'm trying to offer you real input based on my years as a marketer, and my time being a community member here - one of your clients (and that is what I am). This hits me at the core that you - in 2017 - represent this experience in this manner. The more time that elapses, the more damage done.

    I could develop an effective marketing research survey and conceive a marketing campaign that would speak to your donors, celebrate what you do, and honor your community. For free. Because I also managed a market research group in my career. the offer still stands...

  • magiclight
    magiclight Member Posts: 8,690
    edited October 2017

    I did delete it from my favs and as of this a.m. no more emails from bco. Yeah

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2017

    I thought the email glitch was because I only use my iPhone. After the upgrades IT put on this site. I told the mods, they said they’d report it.

    HA!!

    I turned off everything, logged out, and still get e mail notifications

    So my dd showed me how to send it to trash, like spam. Because it is.

  • Outfield
    Outfield Member Posts: 1,109
    edited October 2017

    Posey Girl, me too. I don't know that I've ever posted so many times on one thread. I've never thought so much about it during the day. Nothing on this board has ever hit me so hard.

    I'm not in advertising, I'm a physician. I think of all the damn suffering I've seen over the years: a mother paralyzed from metastases involving the spine, another woman with stage IV trying to keep hiking as long as she could, with her tumour gnarling out on her flat chest. My funny, smart, thoughtful friend whom I worked with in clinic died within a couple years of diagnosis - it was so unfair, so, so unfair, she wasn't even 50 yet. And of course I think of my own suffering. I lost a year of my life with my kids when they were really young to this damn disease. They had a fraction of a parent - a sick, irritable person who couldn't deal with the demands. I remember sticking them in the tub during chemo and lying across the bathroom doorway because I knew I could keep an eye on them without having to move that way. I have permanent physical problems that I can deal with but that it took some time to accept psychologically. How possibly could having had this information beforehand have made it less frightening? The grief about what I would lose would have been unbearable.


  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Ok - still being flooded by emails despite having no email notification requested...

    Any ideas ??
  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Go to your dashboard, pull up you favorites, look to the right and turn off email notifications

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Thank you - done that several times - it fixes the problem temporally then back it starts up again...

    I will delete the fav ( again...) and start up from scratch and who knows??

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2017

    Mods - much of the editorial content is not seen/read because of the way it is presented.

    If I followed my profile I would have to read 89 articles - now, that is about what I read for professional development ...and I am in clinical practice in a year 😱. I very much doubt that women dealing with a diagnosis, treatment or change of treatment can process/sort through ALL that information. It is also (for various reasons) verbose....and too broad stroked. Hence the great role of the community where censorship is largely ones' common sense - and to a great extent, mostly, it works well.

    Back to the bats - really??
    I get the intention was good, but really?

    On another note - you want to see STEEL from a distance - dive into Lita57 - in absolute awe of her stamina and courage. Lita you take my breath away!!



  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    Outfield, your clinical experiencs combined with your personal experiences give you a unique view on the Great Halloween Shamozzel of 2017. I have a blogging pal from the UK who is a breast surgeon and nothing prepared her for the psychological impact of this disease on her personally.

    Mods, if you intend to take on board the recommendations of the people here, please let us know asap. I've been posting the original decision on other bc blogs and you might like to check the Underbelly FB page to get an idea of what these people think. If you tell me there's a major change underway, I'll rewrite my articles and reblog the decision.

    I invest a a fair amount of time on BCO, especially on IBC and male bc topics and, quite frankly, lately I feel embarrassed to be here. While I can't claim to be as psychologically affect as others here, I feel that your apparent lack of concern for these people is not a good look for the world'spremier bc forum.


  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    It was 95% psychological/emotional for me. I can't really describe the sensation and turbulence in my mind but it was the worst feeling I have ever had. And when an MRI revealed a suspicious spot that absolute gut wrenching feeling came back. I think I dread that panic feeling more than anything. It is like the world as you know it is ending. I don't think I could ever "take the fright out of Breast Cancer" as a upbeat fundraising event. It just goes to show that the people who aren't faced with it don't understand.

    Seeing what BC and a second primary did to my sister in law was unbearable. Her suffering physically was horrendous. She had to leave her son, who has ADHD, and her 80 year old mother alone when she passed away.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2017

    The UK surgeon I referred to was invited to give a TED talk:



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