Why Such A Crabby Attitude?

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  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited May 2012

    I agree with Nancy - sometimes a good vent helps. And with outfielder's great observation about projection and people feeling the need to have theor choices validated....which helps to explain what Beesie observed.



    I wonder what other types of cancer boards are like. Do people get reamed if they don't agree to lose a testicle or have brain surgery....I wonder. Crazy cancer leads to crazy meddling sometimes.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Thank you, coolbreeze, you said it better than I can!

    I think America is about *everybody* being able to share their viewpoint and if somebody thinks something is dangerous, one person has as much right to point that out as the person doing the dangerous (or not) thing.  

    Agreed.  But - pointing it out again & again is redundant and idiotic. Most grown women who are big enough to post on this board are also mature enough to research a treatment and or talk to their docs, nature path physician, or whatever. I HOPE no one makes any decisions that could affect their life based upon what they read here.

    Also agreed....this is more of a discussion board. I do use the ignore button, but when some threads get shut down because of irritating people, I think that is just wrong. Why post inflammatory comments to people who are obviously either into chemo, or not? Like the Stage IV thread, Conv and Alt deserve their own space - very good idea! 

    I was not and am not a crabby person, and that is not why the question was posted here....I posted this question out of genuine concern and you have a great idea here - thanks! That just may be the solution.

    Norah

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    I actually thought about this....

    It makes sense in a way that somebodys strategy to facing a life threatning illness could become almost a religion.

    Bessie is the best, once she (or was it Otter?) explained in a post that taking accepting a 10% 15% or even 20% chance of mets and passing on chemo is a very different decision than someone with an aggressive pathology doing it.

    Two years ago I seemed to be the first declining chemo with a positive node, now there are a number of us and there is even a study of intermediates !!!! 

    Howerver I totally understand someone who has had chemo and is alive and well saying, take the chemo.

    Same for lump vs mast vs bi-lat.

    I admit I kind of root for woman to try lumpectomies first, but I can totally respect people who make another choice.

    I never thought of myself as an Alt kind of girl but my path with Lymphedema has lead me to try some very untraditional things...I have gotten both concern and support and I appreciate both.

     I think most of the time, most of the women are pretty good at supporting reasonable decisions and expressing concerns over risky ones. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Athena,

    To answer your question - no.

    I have been on another board concerning medical issues and everyone was very nice. It was a huge forum as well.

    My elderly mom used to have a t-shirt that said "I'm out of estrogen and i've got a gun!".

    Maybe that's what is going on here?  Estrogen deficient?

    Norah 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited May 2012

    I fear that sometimes. Too many women, not enough men. I love BCO but we need more testosterone.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Tongue out Athena!  You're right! 

    Norah

  • tamD
    tamD Member Posts: 22
    edited May 2012

    OK -- this may seem a little off topic but I read the comment below by norahamby re: chemo and I am stunned by this statistic -- is this true?  --- 5% advantage? I ask because people throw a lot of different stats around re: chemo and it gets frustrating and it matters.

    "Many people feel chemo is dangerous, as it offers only a 5% advantage versus the very real lasting effects. "

  • Mardibra
    Mardibra Member Posts: 1,111
    edited May 2012

    It may be true for Nora's dx but not mine. Not true for me!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2012

    tamD - 50% reduction in recurrence for HER2+ve bc with chemo/herceptin and aromatose inhibitors.

    Just a point to make - why is it that the alt treatment ladies are the ones who most often get posts deleted by the mods?

  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited May 2012

    I wanted to stay out of this but I will just post some quotes."

    "Pointing it out again is redundant and idiotic"

    "Do unto others as you would have them do unto you."

    I will take the good advice and use the ignore feature.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    @tamD

    I am not sure where that number comes from.

    But for some ER+ low KI67 type cancers the benefit can be even smaller..2-4%.

    For a tripple negative it is very effective....that cancer responds well to chemo in general. 

    There is a grey zone with chemo, and it is shifting...and it can be confusing.

    The tiny her2 tumor group is a good example of that, though there seems to be a shift towards treating that group more aggresively, it's controversial.

    The best we can hope for is a doctor who takes the time and care to really look at us as an individual and explain the options well. 

  • tamD
    tamD Member Posts: 22
    edited May 2012

    When I started reading this thread I did not realize it would turn into an "alt versus chemo" argument again.  I figure I am just fighting for my life and know that you can find stats and studies to support any argument on the internet.  I never argue the alt versus chemo because people have made their choices and made up their minds.  (don't confuse people with facts, as my dad used to say)  I come here for good information  and get crabby (the thread of the topic supposedly) when people pull up any study to support their argument.  It takes a lot of time to comb a study for its merits and the one I was referred to in response to my question was not worth my time.  It was talking about all cancers, a meta-analysis, vague in all its terms, generally flakey.  I was branded "pro-chemo girl" by the sender but I am interested in all the treatments and info -- so long as people are putting articles up for the benefit of the breast cancer crowd who -- again -- are fighting for their life as opposed to just provoking for the sake of winning some argument. 

    In summary I feel like asking the moderators for a permanent place for the debate for "alt versus chemo" where people can throw out all these studies and stats as they please and leave the alternative threads for just that.  Once the argument starts up and the thread goes off course with these useless studies people finds somewhere, it wastes people's time.  People should be asked to take the debate over to the "alt versus chemo" forum.  Le the forum run for a certain number of posts and then archive it and restart.

    This debate will continue until some real promise in research shows up for this disease.  It would be helpful if people moved the argument off side because it gets dirty rather than informative.

  • karen333
    karen333 Member Posts: 3,697
    edited May 2012

    I am going to respond only to the initial posting about negative and cranky people.  I do find that to be the case in just a few women not on most threads.  The mods have done a really good job of keeping track of them and deleting posts, they are quick to respond to a report this posting.  Most often the consequences are fair and justifiable.  I do admit following certain posting to see what is going to be said next, it is something like watching an accident.  I find that most of these attitudinal challenged people are widely recognized as promoting nastiness.  Just as you find nasty people in life you will find it here, it is a shame but it is what it is.  I stick to my threads and have found many truly wonderful people I would not have had the pleasure to meet were it not for bc.org.  I am thankful to have them in my life, generally when such a connection is made, we take it "off road" to a P.M., so many wonderful, insightiful women have I had the pleasure to call my cyber friends.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited May 2012

    I'm not sure I agree, Jancie.  There has been much calm discussion here about what bugs us, why it bugs us and how we feel it should be resolved.  And many very good points have been raised and discussed, and we've agreed to disagree on a number of others.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited May 2012

    Unfortunately, feelings can run really high when it comes to any kind of cancer discussion.  It's such an ugly disease with no prevention and no cure.  There are no definitive answers.  All the studies seem to contradict each other.  Every oncologist has a different interpretation of the current data.  And, when you get cancer, it's very frightening that there just doesn't seem to be any one "right" thing to do, so each of us grabs onto something that we think will give us the best "edge".

    But... that "edge" is really just an illusion because no one really knows why someone survives and someone else doesn't.  If they did, they'd figure out how to cure this demon!  Maybe that's why we get crabby... we all know that everything we're doing, everything we're trying, everything we're trying to understand is just really up to Fate.  Uncertainty is a Bitch.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Good replies, and I appreciate them all.

    Idea: what about putting a thumbs up or down next to posts, like yahoo does? That way if a post gets lots of thumbs down, it gets deleted....or, if lots of thumbs up, it stays on the Active Topics.

    What do you think mods?

    Norah

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited May 2012

    I think people just need to be grown ups and deal with it on their own.  If you don't like somebody; if you think they are crabby, put them on ignore and you won't see their posts.  One person's crabby is another person's refreshingly honest.  Maybe you all are talking about me, :) but if you aren't, I couldn't name one person I thought of as crabby,  so I have no clue who you are complaining about.  

    As in the real world, you cannot chose who is at work with you or next to you in line at the grocery store or in your support group or whatever.  On a discussion board, people should be able to have a difference of opinions and not everybody should be expected to communicate exactly the same.   But, at least here you have the tools to make them disappear so I suggest that you all try it.  If you don't know how, click on the member you want to ignore.  Their profile will come up, and on the right side it says "ignore this member." Click on that and you will not see their posts again. 

    Norah, you are a newbie who has been here a month; maybe you should give it more time.  You might end up finding that the people who you think of as crabby now have great information later.  

  • Ang7
    Ang7 Member Posts: 1,261
    edited May 2012

    Another great post Coolbreeze! 

    Yes, there are some on here that appear more crabby than you...Wink

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    tamD,

    Not sure about PubMed, but here are some more stats. This is off topic.....

    http://www.ncbi.nlm.nih.gov/pubmed/11869577

    norah

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2012

    Off topic - that article is from 2002 before herceptin - not relevant today..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    What about women who don't need herceptin? That is only for her2+, correct?

    And TamD has asked me for that info and there were questions here about it, so here it is.

    Bye,

    Norah

  • tamD
    tamD Member Posts: 22
    edited May 2012

    Actually Norah I do appreciate this article more than the first because it definitely has more substance. The analysis is of data from trials that ran before 1990 and chemo regimes have changed somewhat since.  But thanks for giving me something that is more meaningful info.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    You're very welcome, tamD. If there are studies showing chemo has more success than 2-5%, I would like to see it.

    Ciao,

    Norah

  • Megadotz
    Megadotz Member Posts: 302
    edited May 2012

    Norah,

    The Mods are implementing some technical upgrades on Tuesday that will allow each of us to tailor our view. Let's see what's available.  

    As Coolbreeze has pointed out  there are already a number of options already available such as ignoring an individual.  

    Personally, I feel uncomfortable with the popularity contest aspect of like and don't like for removal of posts, often the discussion that follow a post where i disagree with the original post is very enlighteneing.   There is already a mechanism for an offensive post to removed by community through the reporting of posts.

    Going back to crabbiness, none of us chose to have breast cancer because it's what the cool kids were doing --albet there are many cool kids here. Many of us have a lot to be crabby about and no one would should be required to smile on a forced march. Some times a good vent is very theraputic,

    I'm a big fan of civility, but understand that may passions run high on the topics here. I think the mods do a great job  of respecting the community's capability of handling discord and only step in after things have gotten out hand.

    I'm  looking forward to Tuesday to see what they have in store to allow us to  customize our experience.

    [edited for typo] 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited May 2012

    Norah, Thank you so much for linking to that study.  Sorry this is off topic.

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2012

    Selena, I think we who have experienced cancer are just more aware that Life in general is a crap shoot. Try as we may none of us on earth can ultimately control our Fate. Perhaps this makes us wiser. It certainly makes us more anxious and yes, crabby!

  • lisagwa
    lisagwa Member Posts: 232
    edited May 2012

    Under the Index forum of "Tests, Treatments & Side Effects" I noticed 2 threads re- complimentary and alternative treatments.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited May 2012

    You're right, Yorkiemom.  Perhaps that is what I mourn most about this... the loss of that feeling (illusion) of "safety".

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Thanks everyone for sharing. Yes, our community is much like a very diverse small city. We appreciate the discussion on this issue. We do our best to put reasonable rules in place, and equally do our best to try and adhere to the rules and moderate where necessary. We sincerely appreciate your assistance with this. 

    Also, as was mentioned, tomorrow morning (around 9am EST) we will be launching a new version of our discussion boards. Although we haven't been able to implement all suggestions, we feel it is a great start. We'll be eager to hear your constructive feedback.

    Wishing you all a good Monday,

    Your Mods 

  • Sommer43
    Sommer43 Member Posts: 600
    edited May 2012

    I post mainly in the "Not diagnosed" section, the "Waiting room" but I read many other areas and the alternative forum is the one, as has been pointed out, where most of the spats happen.  It's the risk we run on a message board, that is a discussion area, and such large numbers, people will cross swords.  I have a long history of message boards, I have my own "talk about all" forum and there are spats on there, occasionally. 

    I am not involved enough to see who is guilty, of being crabby.  I don't offer opinions here, because I don't have any in the areas I post in, it is simply hand holding, support for those who are to enter the waiting room. 

    We are accountable for what we post, this is a community and should be respected and respectful, when entering such a community.  If we post something on a public forum, then we have to expect that people will respond and sometimes counter act what we are discussing, that is for all forums, not just here.  Breast cancer is an emotive topic, that will have explosive areas.. 

    Frankly, I can only commend the long suffering moderators, for the work they do, it is not an easy job.  I think given such a large community, they do a sterling job!  Like any other community, it will thrive or destroy from within. 

    I am basing this on my experience of many forums, not this one alone.  As for crabby posters?  Then, part of human nature, being crabby, as contributors, we have a choice, to respond or not.    

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