Ah, nuts.

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Suzybelle
Suzybelle Member Posts: 920
edited June 2014 in Lymphedema

Opened up my local paper this morning and there, in all it's glory, was the pink, breast cancer awareness section.  Yay, October.  Yell

And guess what?  Out of 16 pages of heartwarming stories about survivors, positive mental attitudes, and pink-themed walks to raise awareness, not one mention of lymphedema.  There was one story about metastatic breast cancer, which I thought was a change...normally it's all stories about how being a fighter and having a postive mental attitude is all you need to beat bc.  Have no idea why a PMA (positive mental attitude) will not work on other life-threatening diseases but feel sure that heavy-handed marketing could do the same for lung cancer, etc.  (sorry - it's hard for me to avoid sarcasm.)

Seriously...I'm e-mailing my paper today.  WHY, if 20% of us (AT LEAST) are getting lymphedema, are we still treated like the red-headed stepchildren, and WHY aren't we doing more to get the message out there? 

I am so pissed.  Don't get me wrong;  I am glad to be alive, glad to be cancer free, and glad to have the opportunity to live my life.  But my life is severely changed as a result of LE and it will be for the rest of my life.  And no amount of pink, sugary, fluffy marketing crap is going to change that.

I just wish someone would acknowledge (besides the lovely swell women of this forum) that LE is not a slight risk...that it's not a minor possible side effect, and that along with the diagnosis of breast cancer, many of us have to face LE with all of the pain, embarrassment, ignorance, and life long commitment to treating it, plus limited insurance coverage.

The whole thing just pisses me off.  However, it makes getting MLD and bandaged in front of 60 strangers today feel a little less scary and a little more like an opportunity. 

Hang in there, my swell sisters. 

 P.S.  I sent the editor of my local paper an e-mail asking for articles about lymphedema.  I think it would be great if we ALL would do that.  We need to start getting loud and proud about this instead of feeling like last week's leftovers.  We deserve better than that, and so do all of the women who know so little about the risks of LE. 

S. (on the soapbox for the next 30 days)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2011

    Suzie, you go!Kiss YES, it's an opportunity today, and BRAVA TO YOU for having the courage (and vision) to seize it. Kudos to your therapist for setting it up and getting their attention, too. Tell her how much we all appreciate it. Can't wait for a report!Cool

    When we call or email our local papers we all might pass along the latest NLN Position Paper, which details the pre-op and on-going surveillance all bc patients should receive as standard care. It's here:
    http://www.lymphnet.org/pdfDocs/nlnBCLE.pdf

    Check your pockets today, Suzie -- we'll all be right there with you!!!
    Hugs, hand-shakes, pats on the back,
    Binney

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited October 2011

    Ditto to Binney's comments, Suzybelle, and to yours.  Excellent idea about asking about articles on LE and giving them the info they need to pursue it!

    Dawn 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited October 2011

    you go girl

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2011

    Suzy, any papers you'd like, other than the NLN? I have a ton on my desktop.

    20% is a conservative estimate, and we are just not on the pink ribbon parade. I opened up the Sunday paper and there was photo (reminded me of femine hygiend ads, all glossy and pretty) of one woman handing another a pink ribboned box, with some blurb about giving the gift of screenng.

    Almost lost my breakfast.

    Let's see a bald woman, with mastectomy scars, dealing with neuropathy and LE. Would a pink ribbon make that better.

    I did get an email from Breast Cancer Action, and they say the pink ribbon was valuable at first as it allowed breast cancer to be discussed (back in the 1970's the NY Times wouldn't put the words breast or cancer in the paper) but has descended into shameless marketing.

    We are the red headed step children. Let us know how we can make ourselves heard and seen.

    Kira

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited October 2011

    Go for it Suzybelle,

    LE sucks!! 

    Alison 

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited October 2011

    kira, I saw the same ad and had the same reaction.  I had no idea when I got diagnosed with bc that I would become a marketing opportunity.  Imagine that.  Yell

     The lecture Saturday went well, and the group of pts asked some good questions, but it was a bit disconcerting.  My le therapist talked for nearly 2 hours about LE, and said several times that it was a progressive, chronic medical condition that currently does not have a cure.

    After the lecture, one of the pts came up to me and asked how much longer I would have to bandage and wear compression garments.  I wanted to scream.  Then yesterday afternoon another woman asked me the same thing and looked thunderstruck when I said, "Forever.  There's no cure."

    Seriously, why do people have such a hard time understanding this?  Nobody does this to diabetics and people with asthma.  I just don't get it.  I think part of it though is that crap in my Sunday paper.  Early detection, pink crap and a positive attitude = a charmed life.  Apparently breast cancer is a temporary problem that's no big deal.

    I'm sorry - my attitude stinks today.  And it's Oct. 3 and I have 28 more days of this crap.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2011

    Suzy, brava! A huge thank you for taking that step to educate.SmileCoolKiss

    It's weird how the "forever" part doesn't sink in to anyone. I have a friend I only hear from a couple of times a year, and she starts our conversations off every time with, "Has the lymphe-caca gone away yet?" Just can't get her mind around chronic.

    I used to love October...
    Binney

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited October 2011

    I forgot to mention that the only article or website that my le therapist really pushed was Stepup/Speakout and the letter from the dr. with LE....Laughing  The ladies who created that website and the dr. who wrote that letter are sooooo smart!!!!  I was so proud of you guys!!!!  Kiss

    Binney, I still love Oct. but I hate hate hate being an unwilling participant in a marketing blitz.  And I really hate how I'm made to feel like a wiener when I say something like that.  Not from you guys, of course, but you know what I mean....

    I'm wearing my 'think before you pink' button and have been distributing flyers on what to avoid, etc.  I'm turning into a very obnoxious person...and I was already pretty brassy...Cool

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited October 2011

    Suzy, and all my other LE ladies...................I too am  disgusted with all the clowns who have no idea what LE is..........................I'm tired of being asked "what's wrong with your arm", also tired of people saying................."what do you mean you have to wear that 24/7's", thren there is the idiot who said "come on, nothing lasts forever"

    I was asked by a cashier yesterday if I would like to donate to "cancer when I was at the registr checking out....................I said "no thank you", she persisted, so I finally said "I have already donated to BC, I gave 2lbs of flesh, and 8 lymph nodes"................I hate pink

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  • Outfield
    Outfield Member Posts: 1,109
    edited October 2011

    Ducky, I LOVE that response.  We've been getting pestering phone calls here.  I don't know why - maybe one of us put our contact information down not knowing it would be sold?  But it's an organization I've never heard of that calls at dinner time, just like any other telemarketer. Requesting donations to help  women with breast cancer!  They won't give up.  Maybe saying something like that will silence them.

    Did I say this before?  I am still feverish and not reading everything, not sure.  There is a really good thread on Stage III about pinktober. 

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited October 2011

    Outfield........................give it a shot ........it worked for me, and also.........tell them to take your name off their list, also remind them that calling after you tell them not to is a criminal offense..........I never get called back...........

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    I got my first cancer telemarketer call today that was raising money for children dying from cancer. I listened and then said I had just donated toward a children's cancer fund yesterday - I had put money in a bucket manned by college students at a traffic light. She kept going and then I said that I have donated to several cancer organizations throughout the year and that I was a cancer survivor myself and had walked and raised funds. She was not deterred and continued until I abruptly interrupted her and asked if she had heard what I had said. I loudly repeated I had had cancer and have maxed out my cancer donations. She then actually seemed irked and I said goodbye before she could say anything further. Apparently having cancer doesn't give you cred. Sheesh!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2011

    I had the opposite reaction when called by a telemarketer for a children's cancer fund. I said, "I can't contribute now since I'm not working due to this same disease". The very sweet young man wished me well and said he hoped I would be healthy again.

    Occasionally these places hire people who listen in addition to talking.

    Leah

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