How can we make this truly safe, supportive, judgement-free?

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

    Now that we are discussing rights, laws, may I briefly digress to the topic of rules?

    Rules by BCO. The terms and conditions read, in part:

    You acknowledge that all members are permitted only one verified member identification, and that operating multiple accounts, even with unique email addresses, or a unique computer, is not permitted.  If a user is banned from the Discussion Boards, s/he is prohibited from creating a different account. 

    For more on the community rules, go here:

    http://community.breastcancer.org/help/rules

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

    That's Life, Impositive is fine and Eve just stated they are in touch.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012
    Athena, I didn't think the rule had changed.  Are you saying that if those who are causing problems now are banned then they can't return?  So we should all be careful?
  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Thats life, it was not my argument, and my comment was not related to your comment about prayer. If you read back over the thread, you will see that the point has been made several times by others that belief in alternative therapies is like religious belief and should be respected in the same way, i.e. not questioned. I really am just trying to take people at their word, because I have zero desire to upset or disrupt anyone, yet would like to be able to read about and discuss pros and cons of alternative approaches. 

    It has also been suggested a couple of times that there are no facts, as in, for example:

    "This years facts are nexts year's ineffective treatment. It's really hard to enforce facts when they don't exist. "

  • thats-life-
    thats-life- Member Posts: 1,075
    edited June 2012

    athena, are you meaning me? I changed my pic because when i was writing to chillipaddi i felt that my pic of my daughter and i laughing on the beach in bikinis was inappropriate. I dont have any pics of me that are nice, i look sick and tired, so im hard pressed to find one that suits. edited to add: only have one membership!

  • thats-life-
    thats-life- Member Posts: 1,075
    edited June 2012

    momine, sorry if i misinterpreted your comments.

    Thank god impositive is ok :)

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

    Not aimed at you at all, that's-life.

    Glad impositive is ok.....now if only we could hear back from chilli.

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    I called it "magical relativism" earlier, but "impositive" is cute, and a new word for me.

    I am simply trying to find a way for everyone to be accomodated here. 

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

    Not sure if this thread is going anywhere. Shall we just close the thread?

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

    Momine, I was one who said that alternatives compared to religion, but I didn't mean that it couldn't be questioned, though some don't seem to like being questioned from what you've said. I'm sorry if anyone was so defensive and rude with your questions. I meant that their belief in say, acupuncture for example, was based on some principle on which the treatment was built.  Now there may not be physical meridian lines that can be scientifically proven, yet the practice can cause pain to be relieved and I've heard that many surgical procedures are performed using acupuncture alone for pain relief.  In fact there was one such operation filmed where the patient was chatting with the interviewer while being cut open with no anaesthetic in a documentary. Maybe one day we'll find out why this works, just as we found out how aspirin works long after it had been widely used.  And many mysteries remain to be solved about the human body at many levels.

    Which brings me to facts.  I'll start a new post for that.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited June 2012
    Momine: I really want to question all the alt therapies too! I have wanted to for 2 years, get our teeth stuck into dissecting the studies, share any successes or failures without fear of 'i told you so's'...but most of our PRECIOUS time has been spent defending the right to discuss them!..I have been driven into a quiet corner, sometimes i try to open discussion on a study, or a therapy, but only a couple of members are willing to openly discuss these alt therapies. You will see that many, many people read the information, or posts, all hoping (as they say) to find info that may help, but not many get involved in the discussion. It can be isolating to be branded an 'alt' person. Its crazy, because so far i have done the conventional route. Much time has been wasted. I admire chillipaddi greatly, for standing tall, loving us all enough to share her journey despite probable ridicule. I wish people would understand that conventional therapy doesnt offer us much and we need to discuss helping ourselves as much as possible. How to get the message across that this forum is not a threat to conventional wisdom, but a potential help for our health, is the million dollar question.
  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2012

    Moderators, it would be nice if we could sort things out by letting everyone have their say.  It saddens me to see some who aren't able to come together with an open mind, willing to see the other person's viewpoint. If we want peace than we have to BE peaceful.

    I'll let the decision be by consensus.

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

    Mods: closing threads merely leads to new ones. Better get it all out here, IMO. These topics/issues are longstanding and won't just go away. Closing a thread is childish and does not solve anything. It just leads to more bad feelings and unresolved issues. The adult thing is to work through this.

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

    I think the decision should be Joy's. I've had my say and won't be posting on this thread anymore.

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

    That's Life, I so admire your attitude.  I'm saddenend that you feel you can't participate openly.  I too prefer to ask lots of question, research and check everything, conventional or otherwise.  I thought you had moved house and that's why you were busy or not online.  You're another examole of why we need to clean up this forum.

    As a "moderate" who has no preference except for what works, I feel caught in the middle. I do still get many ideas from the alternative forum and enjoy it for the most part.

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

    I agree with you Athena.  I was thinking it would just move to another thread.  Maybe we need a better title for the thread. Would that help?

    Yes, let's keep going, and sorry mods that we're keeping you on your toes.

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

    I am out of this thread as stated before, unless someone addresses me personally. I will then have the courtesy to reply as I did yesterday

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Thatslife, that is to bad. I am relatively new to BCO and gave up on message board drama years ago anyway, so I have no idea of the history of the various forums here.

    From other boards though, I have learned that if you find a poster disruptive, it is usualy best to ignore said poster and carry on with your business. In other words, don't let a few trolls derail you. 

  • KatRNagain92
    KatRNagain92 Member Posts: 522
    edited June 2012

    Here's an excerpt from Ralph Marston ~ The Daily Motivator.  I thought we could all use it :)

    Stop waiting for everything to be perfect. Start making good and meaningful use of all you have.

    Let yourself be driven forward by your highest dreams. Feel the fears and learn from them, but don't let yourself be held back by them.

    Let go of your need to control those around you. Experience the power and effectiveness that come from controlling and disciplining yourself.

    Live intentionally, on purpose, with the utmost sincerity and authenticity. Live this day and every day with the excellence you know you deserve.

    Ralph Marston -
    The Daily Motivator

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

    I feel very moderate too and would like to keep my mind open. However regardless of who is commenting in a less than civil manner, it's still uncivil. And yes, I would feel this way about any thread that devolved in that manner and am aware that that has happened. For now, I'm going to enjoy my summer off, play around my house and patio and enjoy my new grandchild! Wish you all the best. Caryn

    PS: Joy, thank you so much for trying to bring things together with maturity, grace and fairness .

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

    I think as long as the people who participate in a discussion are interested in the issue at hand and in being supportive without ulterior motives or handles, this can be productive. I think this thread has already been helpful.

    I am very science-based in my medical decisions. I prefer to phrase it thus than to say "conventional" or "alt." I think science-based is the best way I can describe myself especially in the world of cancer. The problem is that I doubt the science of some conventional bc therapies (so do researchers - so I am not alone), and believe that some approaches which are alt. do have some science, although it remains unstudied.

    However, my personal alt. choices wouldn't really involve what is discussed (such as herbs and diet, or yoga or prayer). I tend to think of things like immunotherapy, hyperthermia and other procedures whose efficacy for bc is still unknown as alt. measures I would consider if I reached stage IV.

    I consider exercise complementary for me - not alt. I don't follow any dietary plan. I do take supplements (Vit. D3, co-enzyme Q 10).

    My main therapy for cancer consisted of (1) surgery (very conventional), (2) hormone therapy as far as I was able to tolerate it -which was not very far because I almost lost my life thanks to Tamox. and Lupron- and (3) stopping smoking. There is great science to the benefits surgery for bc. There is less science available tying smoking and BC, but stopping smoking has a lot of science to recommend it generally. 

    I thin the black/white distinction between what is "conventional" and what is not is slowly disappearing.

    Most people use "alt." therapies including prayer (as defined by researchers, that is one alt. therapy - and we should remember that all treatment is partly belief-based) along with conventional. I think the definition of alt. being INSTEAD of conventional needs to be seriously revised. Most people, when faced with deadly illnesses, will try to have their fingers in as many pots as possible, using a complex set of algorithms. For some, it goes like this: "I will have chemo and if that fails, I will pray." For others, "I will do the Budwig protocol and, if that fails, surgery."

    I challenge anyone here to say they don't have "Plan B" that is somewhat "alt." That is human, understandable, and it's what we are all doing. Hey, I resigned from a recent job partly because I was afraid the immense stress would cause my cancer to come back! Where's the science in that? I don't know, but it resonated with me nonetheless.

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    "I challenge anyone here to say they don't have "Plan B" that is somewhat "alt.""

    LOL, nice observation, and I am sure quite true. 

  • ali68
    ali68 Member Posts: 1,383
    edited June 2012

    Hi everyone, I think whatever treatment or "alt " you have if you don't believe it will work it won't. Call me stupid but I believe our mind plays a big part in what happen's to our body.

    I'm not saying the mind can cure Cancer but it plays a big part in it. Many times I have read people giving up and others fighting for many years.

    A doctor told me " never give up hope that's when shit happens"









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

    Maud and Patty - go ahead and point out any dangers of any treatment you want, on any thread you like. I wouldn't jump on you about it in the way any criticism here is jumped on. I don't think you could argue that surgery would be all that dangerous.

  • kayfh
    kayfh Member Posts: 790
    edited June 2012

    Yes you could. Any treatment modality that requires you to submit to a drug induced 'state of not being' while people, albeit skilled, remove large amounts of your tissue, cauterize, stitch or staple you closed and then requires you to take Rx analgesics is probably reasonably construed as dangerous. The first risk, while remote, is not regaining consciousness, either dead or vegetative, the second is damage to you larynx because of the induction of the anesthesia and intubation, sometimes anesthesia doesn't work. There are apocryphal stories of those who wake up during surgery, but because they are incubated and sedated cannot cry out. Then there is surgeon skill levels. They did not all graduate at the top of their classes. You have had surgery or thought about it. You could probably figure out many more risks, some of them are as horrific as what Chillipadi has had to go through.

    My point is all contemplated treatmentsfor CANCER carry both risks and benefits. The natural history of the disease, untreated, quite often is worse than the treatments. But not always, sometimes the best course for an individual is no treatment. Each one of us has to determine what kinds of risks for what benefit we are willing to take.

  • kayfh
    kayfh Member Posts: 790
    edited June 2012

    Yes you could. Any treatment modality that requires you to submit to a drug induced 'state of not being' while people, albeit skilled, remove large amounts of your tissue, cauterize, stitch or staple you closed and then requires you to take Rx analgesics is probably reasonably construed as dangerous. The first risk, while remote, is not regaining consciousness, either dead or vegetative, the second is damage to you larynx because of the induction of the anesthesia and intubation, sometimes anesthesia doesn't work. There are apocryphal stories of those who wake up during surgery, but because they are incubated and sedated cannot cry out. Then there is surgeon skill levels. They did not all graduate at the top of their classes. You have had surgery or thought about it. You could probably figure out many more risks, some of them are as horrific as what Chillipadi has had to go through.

    My point is all contemplated treatmentsfor CANCER carry both risks and benefits. The natural history of the disease, untreated, quite often is worse than the treatments. But not always, sometimes the best course for an individual is no treatment. Each one of us has to determine what kinds of risks for what benefit we are willing to take.

  • kayfh
    kayfh Member Posts: 790
    edited June 2012

    Yes you could. Any treatment modality that requires you to submit to a drug induced 'state of not being' while people, albeit skilled, remove large amounts of your tissue, cauterize, stitch or staple you closed and then requires you to take Rx analgesics is probably reasonably construed as dangerous. The first risk, while remote, is not regaining consciousness, either dead or vegetative, the second is damage to you larynx because of the induction of the anesthesia and intubation, sometimes anesthesia doesn't work. There are apocryphal stories of those who wake up during surgery, but because they are incubated and sedated cannot cry out. Then there is surgeon skill levels. They did not all graduate at the top of their classes. You have had surgery or thought about it. You could probably figure out many more risks, some of them are as horrific as what Chillipadi has had to go through.

    My point is all contemplated treatmentsfor CANCER carry both risks and benefits. The natural history of the disease, untreated, quite often is worse than the treatments. But not always, sometimes the best course for an individual is no treatment. Each one of us has to determine what kinds of risks for what benefit we are willing to take.

  • kayfh
    kayfh Member Posts: 790
    edited June 2012

    I got too excited and posted three times. Sorry!

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

    Kay, I so agree with you about not all surgeons graduating at the top of their class. Thank gawd I have a family doctor that is in the know about who's a good surgeon and who's not. When my son needed hand surgery, he advised we would have to wait a while for the best, but highly recommended we do. I was willing to wait "for the best". Nobody's touching me or any member of my family who got a "C" in medical school. Lots of horrible surgeons and anesthesiologists out there. One must be careful in their choices.

    Ed for sp

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

    Kay - I know there are risks having surgery, but the risk of not having surgery for bc would far outweigh them.

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