Stage IV's Using Alternatives Deserve our Respect and Admiration

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  • leggo
    leggo Member Posts: 3,293
    edited April 2012

    Personally, I dislike the "report this post" button. I think everyone should have the opportunity to read every post. Deleting your own is one thing....deleting someone else's is another issue. I'd much rather avoid some spam than not have had the opportunity to read a post.

  • elmarie
    elmarie Member Posts: 5
    edited April 2012

    We have an appropriate African saying : " When the elephants fight, the grass gets trampled". To debate or not to debate is, in my view, not the issue! I would ideally like to share experiences with those following an alternate route on our shared BC process PLEASE!

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

    Elimar, Most people apparently don't use the ignore button or they wouldn't be leaving BCO due to what others are saying.  The problem with the delete button is that people want to see if damaging or libelous things are being said about them.  People feel a need to protect their reputation.

    This problem has been going on since long before I joined the site so a solution of some sort is required.  Any ideas?

    In regard to respecting people, we can think what we like. I meant to respect people in what we write here and to allow them to decide their own treatments without being critical since they have the right to make their own decisions and receive support here.

  • elmarie
    elmarie Member Posts: 5
    edited April 2012

    We have an appropriate African saying : " When the elephants fight, the grass gets trampled". To debate or not to debate is, in my view, not the issue! I would ideally like to share experiences with those following an alternate route on our shared BC process PLEASE!

  • Wabbit
    Wabbit Member Posts: 1,592
    edited April 2012

    I stay away from the Alternative threads and hesitate to say anything now.

    But it is unrealistic to expect no disagreement about the use of alternative medicine and declining conventional when you are trying to promote it on a conventional medicine board.  What you see as 'support' they often see as 'enabling' dangerous and even life threatening choices.  Makes it almost impossible for some to ignore because they really do care about the people here.

    The same would be true if conventional medicine supporters tried to take part in an alternative medicine forum. 

    And we are dealing with cancer here ... not a cold or the flu ... so the stakes are high. 

    If alternative medicine followers want a place where any theory or practice out there can be 'discussed' as reasonable treatment options ... but only by those who approve of it - no disapproval allowed ... this is  never going to work out as that place.  IMO.

  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited April 2012

    I am following conventional tx but am open to alternatives. I read a lot of posts everywhere on this site.

    I think it is very sad that support and respect is not given to all members in all forums.

    Picking on anyone for their choices should not be tolerated. We have enough stress already.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited April 2012

    Really guys, this is the Internet. This site is tame compared to what goes on elsewhere.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Touché, Chickadee.  Yup, you wanna see real fighting?  Go over to a political board.  Eeeek.

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

    It's only the person who is affected who can say how they feel.  I've heard from many who are affected by the bickering and criticism here, and others who have left. Are we going to accept these casualties without trying to help?  Does anyone here have a heart?

    I can't see any purpose in comparing BCO to those abusive sites where most of us would take one glance and then close the page.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Touché, JLW.  You are right - we should do better.  We are all fighting breast cancer, for crying out loud - you'd think we would be more supportive!

  • Kadia
    Kadia Member Posts: 314
    edited April 2012

    The science doesn't seem definitive in any way in regards to a link between dairy and BC, so I'd use other factors to make a decision. I personally avoid dairy most of the time because of the environmental damage the dairy industry causes and the abuses it inflicts on animals. I've also conveniently had an aversion to dairy most of my life--I'm probably at least mildly lactose intolerant. 

  • Kadia
    Kadia Member Posts: 314
    edited April 2012

    For some "bickering and criticism" = thoughtful, lively discussion. 

    That's why in theory at least, a clear differentiation between posts where the OP wants support only and posts where debate is welcome is a very good idea.

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

    Thanks for your support Kadia.  I'm not suggesting it's all bickering, but many posts have been deleted and that's not a good sign.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2012
    How about some respect for Stage IV women who do choose traditional medicine - the ganging up on Coolbreeze on the chemo forum was unwarranted. It goes both ways, you know.
  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited April 2012

    Respect, Absolutely!   I hope Coolbreeze is OK.

  • apple
    apple Member Posts: 7,799
    edited April 2012

    no ban for Anne

  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    I think the debate area is a great idea Joy--I would hope people would respect the term of it and debate with civility--I think most of us are so interested in others thinking--I've shielded myself from so much (it worked for me) but I'm learning al ot now and it's fine for me.  But I do have to say Caryn's idea of sticking a banana up one's nose would no doubt be frowned upon by alternative or medical worlds LOL

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2012

    Ann is just fine according to her FB page. It is also reported that the mods said her ban was a mistake. Hope she comes back. Now, about those bananas :)

    Caryn

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

    Someone's already taken up the idea by posting about Alkaline diets in the research area to save any debate here in Alternative Medicine.

    Mmmm, bananas. So sweet when you've given up sugar. Surprised

  • edot
    edot Member Posts: 72
    edited April 2012

    It's sad that we actually have to ask for respect and admiration - by virtue of the fact that anyone who has chosen to share their experience, regardless of treatment choice or stage - deserves respect and admiration.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited April 2012

    With all due respect, I strongly doubt that threads marked "support only" or "debate only" could ever work!  Where "support only" does seem to work well is in the "Starting Chemo in May"-type threads, where everyone is in the same boat and anxious to make comparisons.  Many of them maintain their friendships and many eventually move on to a private FB group.

    But someone who is trying to make a momentous decision ("should I do chemo or not?") may be looking only for support.....but it doesn't take long for "supporters for" and "advisors against" to make their opinions known and...voila...a support thread turns into a debate thread.

    As edot says, it's sad we have to ask for respect and admiration.  But....that's just life, real life, isn't it, where we have to earn respect and admiration.  Why should the internet be any different?

    Anyhow, this is just my humble opinion! 

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

    I don't think you can separate support from debate either. Debate can be supportive and support can be debated, for one.

    And one person's support is another's debate. Another's debate is a third person's argument.

    People just have to come here and everywhere on BCO with good intentions. It's the ill will that stirs trouble most often. Some people are hopelessly dense and can and do hurt feelings through their sharp, insensitive remarks. But that is the exception. 

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

    IMO, a debate forum would be great but it will not alleviate the issue, imho.

    The issue is not really about the differences of opinions and values.  

    This is an issue because the lines in the sand are crossed and people are shoved into the dunes, sometimes face first, usually after much hassling.

    I was unaware that this is also going on in chemo and other threads.  That is so unfortunate.  

    IGNORE BUTTON   :::::  I don't like the ignore button because the one who is ignored is told, oh, now so and so is ignoring you, and then it's well so much for a true discussion, it's all about control and dadada, in other words, the haggling goes on anyway, the thread is misconstrued, the readers burdened with a ton of baggage to wade through.  And everyone gets their dose of stress for the day.

    That said, the ignore button can save a person from being banned.  But their good name is mud anyway and they do not even know it.

    REPORT THIS POST  :::::: This is abused.   People run in cliques, the same ones seem to frequently report posts.  Don't know how it works, exactly, but somehow the community can get a comment deleted without the mods attention, though the mods can replace the comment at their discretion.  

    INNOCENT?   :::::  I have witnessed comments being edited by the writer after the discussion wires up and attitudes are flying, but the one who started the high emotions is all innocent and supported as always very respectful.  

    RULES ::::  To me, this issue is all about rules that need outlined and enforced.   After a few true admonishings for not following the rules there will be less who are swarming on alternatives and hassling those who have the personal convictions to use the alternatives and this time in their lives.   

    IN THE HEADING :::::  Add, "For alternative users only, or those who are seeking information and support.  Do not post unless you qualify."  Simple.  Drama-free.

    ME ::::: Outside of the excisional biopsy/lumpectomy, I am alternatives only.  I have been thus for decades.  Though at times I do falter on how to deal with my health issues, and therefore seek information and support for hypothyroid, etc., I am primarily on bco for information, support and to share whatever I have experience with.  I don't want the stress.  But when I see the arguing, the hassling, I want to be a peacemaker.   For me, this will probably need to stop.  

    Do I really have to stay out of alternatives, play games only or go to the more light-hearted threads in order to find the support I need here?  I know several women who are doing so now, they don't want the issues that comes with the alternatives,  complementary and holistic threads, even though they want the information.  It always takes the turn annd does not serve them.  Me too.  There's always something.

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

    Another well thought out post Diane. If you don't mind I'll copy your headline style.

    I agree that the rules need to be stated IN THE HEADING and those breaking the rules need to be told and rules enforced.

    ABOUT ME... I'm not fully alternative as I had surgery, rads and am on Tamoxifen.  If I didn't have osteoporosis I'd use alternatives to AI's as that's easy but the Tamox alternatives don't look good.  I refused Bisphosphonates and dropped out of chemo and my chances of progression are high, around 70% that I will progress, or 30% that I won't. So for me the alternatives may be a life or death decision.  Those with HER2+, triple negative or Grade 3 tumours are in the same boat.  We know NED may be temporary.  So I research constantly including extreme or heavy duty alternatives that are definitely not complimentary, and read here for new ideas.

    So who would be ALTERNATIVE ENOUGH TO QUALIFY to post here? Someone suggested I wasn't alternative enough to be here so that would present a dilemma.  I'd be fine with anyone posting (politely) provided they don't keep presenting conventional treatments as the answer.  This has been the main problem on this thread, the persistent cries to use conventional treatments. 

    I suspect a DEBATE THREAD would just be used by conventional users to try to "set us straight", with only a few daring to argue for alternatives and getting upset and once again deleted or banned, so it probably isn't a good idea though I'm open to trying it.

  • Stormynyte
    Stormynyte Member Posts: 650
    edited April 2012

    I don't know about you all, but if I am making a choice that is just stupid, for whatever reason, I would really like someone to call me out on it, not blindly support my stupid-ness. 

    I am all for respecting peoples personal decisions, but if its just dumb, it is and I feel lucky to have people that are strong enough to point that stuff out and explain why, even if I don't agree with it.

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

    In regard to those who come here to ADVISE OTHERS TO CHANGE THEIR TREATMENT PLANS, regardless whether they prefer standard or alternatives

    When was the last time any of us saw a family shopping in the supermarket, the cart overloaded with sweet, fatty, junk foods, no fresh vegetables in sight, parents and kids obese and not looking healthy, and then we approached them and advised them to buy healthier, low calorie foods?  When was the last time we told our smoking work colleagues to give it up before it killed them?  Or our alcoholic neighbour to cut out the drinking and stop beating his wife?  Yet some of us think it's OK to offer unwanted advise here. Yes, I've done it myself and I've learned not to.  So I get it that people are worried and just want to help.  I really do understand the motivation and genuine concern.

    We who drop the standard treatments hear it from our Oncs, our PCP's, family and friends, complete strangers etc, yet the reason we're here on the Alt threads is often because we are independent thinkers and have already looked at the conventional view and find it lacking.  Most seem to have done extensive research before rejecting conventional treatments.  It's not something we want to get wrong.

    In the same way, conventional users who have consulted oncologists must find it offensive and intrusive when others tell them they must use asparagus or colonics or alkaline diets. It's frustrating and can ruin anyone's day.  We alties get unwanted advise constantly and need some relief from the criticism in society and want to touch base with like minded friends for support.  It doesn't matter how polite the critics or advisers are, if we haven't asked for conventional information or opinions, it feels intrusive and pointless when given and overwhelming when it comes so frequently.

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

    Stormynyte, so are our critics assuming we're stupid or dumb?  That's quite a strong assertion that ignores the history of medicine.  Will we look back in 100 years and think our current treatments or research methods or insurance systems were so clever?

  • Stormynyte
    Stormynyte Member Posts: 650
    edited April 2012

    Don't twist my words, I never assumed to know what anyone else thinks and never said I did.

  • Stormynyte
    Stormynyte Member Posts: 650
    edited April 2012

    And this is why people leave...

    I say something about what I would like in response to my doing something dumb, and that is what I get. I should have known better.

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

    Sorry if I gave that impression Stormynyte. I clearly said "our critics", not you or any individual.  I meant that those posting here to criticise may be assuming we are not intelligent enough to make up our own minds despite the Oncologists view which may be why they are criticising.

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