How can we make this truly safe, supportive, judgement-free?
I've seen vulnerable women verbally attacked and leave too many times simply because they have chosen an alternative treatment. It's our legal and moral right to choose the treatment of our choice. We also have the right to question or debate any treatment, but surely not in a critical or judgemental way when we can see the person is vulnerable?
I know we can't delete a message just because the view expressed differs from ours, yet it was obvious recently that a dissenter's comment and the following conversation would be upsetting for the one criticised. And sure enough, we may lose a very vulnerable member who was previously getting comfort from this forum.
When competent adults have made up their own minds about their treatment choice they certainly won't be persuaded to change it by being judged, so we need to find a way to keep dissenters, skeptics and critics from causing distress while allowing their own concerns to be heard.
Please don't make this about blame as we all have a right to express our views, but rather, how can we deal with this to preserve everyone's dignity and feelings of safety?
Comments
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I wondered if a pinned thread similar to the one on the stage IV forum might work.
Critics, skeptics and dissenters please post on this thread.
Probably not, but it might stir up some ideas. It would allow the critical posts to be moved from the thread where people might be at risk of being upset while allowing the critic to still express their view. I'm sure many would be prepared to answer their point but imagine the "tone" would be a problem.
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I don't know what the answer is, JLW. I've seen posters on both sides of the "great divide" upset folks on the other side. Each seems to think they are being helpful and/or warning of danger, while the folks they're advising feel attacked.
I know the case you're referring to, as I've been following the topic but not posting. There were 2 or 3 posters in the past week or so that jumped in without reading the whole thread, or they would know their questions (why can't you try chemo? don't you know your course of action is dangerous? why don't you go to an oncologist? can't you have surgery?) had already been addressed (tried chemo, it failed. yes, I know it's dangerous, but what choice do I have? just give up and die? I AM being followed by an oncologist who is monitoring me and keeping me pain free, since he has nothing else to offer me. And no, no surgeon will touch me.) I nearly jumped in myself to tell them to read the entire topic first, but someone else beat me to it.
I really hope we don't lose this poster, as she needs all the encouragement and caring we can offer her. The last thing she needs is being grilled about her decisions.
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I am truly baffled by adults criticizing the tx choices that other adults have made and being cruel to boot. I have seen some courses of action that are not right for me and a few that I think are too wacky to believe but I will fervently defend another's right to make those choices. Additionally, if I have nothing nice to say, I say nothing. Simple, no?
Caryn -
Excellent points Riley. Yet the main dissenter knows the whole story and still chose to criticise. No one can know what risks they would be prepared to take in the same dire situation so they shouldn't judge.
I have no problem with the moderators taking these contentious threads off active topics till things calm down. It may well stop other skeptics from jumping on the bandwagon. I was afraid they would lock it up, like WOM's thread. She's not been back since then though as a stage IV she needs the support. Her progression was so soon that it would have happened sooner or later, chemo or not. Yet people are blaming her. How can anyone return here when people are saying "I told you so?"
I see Impositive (fungus thread) came on once to dip her toe in the water and was met with a cutting, sarcastic remark attacking her credibility. She's not posted since. She was discredited again by the black salve dissenter. That post needs to be edited by the moderators as Impositive is not here to defend her reputation.
Will BCO change their policy after they are sued for allowing bullying? Do we have to wait for some bereft husband to publicise the situation after his wife has been driven to suicide?
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What I find confusing is when you see people who post under Alternative but their comments are always negative and obviously AGAINST any alternative kind of treatment. So why are they reading these threads in the first place and posting when they obviously don't believe in any other way of treating their cancer other than conventional treatment? And that is fine if that is the only route these people want to take. But don't come down on the people that choose to add alternative choices to their conventional treatment as well!
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Caryn, it's the practice in most countries to honour a person's treatment choice. There is a right to refuse treatment unless the adult is incapable of making decisions, such as with mental illness or dementia. A health worker is trained to listen and empathise before they carefully state their concerns, offer alternatives and perhaps suggest some sort of compromise. If this comes across in a judgemental tone then the patient is likely to dig their heels in and the opportunity to help will be lost.
So my point is that the critics are actually causing the very thing they want to prevent. They need to put themselves in the position of the person they are worried about if they are to succeed.
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Smiley, yes, that raises a red flag for me too. It's clear they see only one way to behave, and that's the well worn, scientifically proven way. True critical thinking would take into account...
1) There is no cure for stage IV BC. If evidence based medicine doesn't have the answers then it seems cruel and unethical not to allow alternatives. We should not be so elitist that we think only people with degrees have answers.
2) Natural selection includes many, many variations before an improvement is made. Alernatives are using variations that may one day lead to a cure. In the process they are taking risks, but they have the right to do that.
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Joylieswithin, you said "...we all have a right to express our views," but it seems that you mean we have a right to express our views only if we agree with someone else?
I'm pretty sure I know the discussion you're referring to, and I see it completely differently than you do. If I'm driving toward a cliff over an abyss, I'd consider it a kind and supportive thing for someone to take away my keys or grab the wheel. I'd hope nobody would stand by cheering me on and telling me to step on the gas.
I don't believe anyone wants to take away anyone's right to choose treatment, but there are people (like me) who want to be sure others to have true *informed consent* about the options they may be considering. Believing something doesn't make it true. In my very humble opinion, it's unconscionable to stand by and watch someone self destruct without having the integrity to intervene. Sometimes we all make bad choices, but those of us with true support are fortunate enough to hear the hard truth when we need it most.
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theneme, I read this thread from start to finish and not one single person was cheering for the treatment .They were encouraging the woman herself. She is out of options and is choosing this with a sound mind. Why would anyone feel the need to take her hope away? -
Joy, give it a rest. I can't help but feel this is about your bruised ego. Your grandstanding and acting like a drama queen isnt going to get you anywhere. I have deleted my posts on you,so drop it.
As thenewme said this is about informed consent. I got over a dozen pms thanking me for my post. Only one person expressed that they did not like what I wrote. You and others also misconstrued what I wrote as usual. My post certainly was not bullying.
There were most definately people cheering for the treatment and saying things to the effect that this is going to be a medical breakthrough and don't forget to document everything so physicians in the states can learn from you. Statements like this are insane.
The medical community is well aware of what black salve is. It does not "push and pull out tumors, parasites, virus and bacteria". It's just a highly caustic agent that burns through the tissue and it certainly cannot differentiate between cancerous tumors and normal tissue. If it eats through a blood vessel there can be uncontrollable bleeding and a trip to the ER. Infection and sepsis is a real concern. People have destroyed so much tissue they had to have grafts in surgery.
To not inform someone of what they perceive to be a cancer cure, to be dangerous quackery is immoral and unethical.
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No, thenewme, I don't want to restrict opposing views, if you'd read what I said that would be clear. I am a strong believer in people's right to disagree, but people's mental health must come first. When disagreement descends to judgemental and insulting comments that is very damaging. And the vulnerable person has run out of options so there is no question of them self-destructing.
When making a risk assessment about any treatment where there is a chance the treatment itself may be fatal, we have to take into account the risk of taking no action which in this case will definitely end in death. As for scientific proof, there is none that I know of, so again that has to be taken into account. As the decision was already taken, we can only offer emotional support without judgement.
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I don't get what the big deal is. If someone doesn't agree with a choice I've made, so be it. If they would like to tell me why they think it is the wrong way to go, they can do that. I don't have to agree, or change my mind, and seeing as how this is a web site, I don't even have to read their whole comment.
This is a public website. There will be so many different opinions there is no way we will all ever agree. I don't take anything said here personally and most of the time I don't think it is meant to be personal as in "I think you are wrong." I take it more as "This is what I would do if I had to make this choice."
Everyone has a right to their opinion, no matter who agrees with it or who is offended by it. Everyone also has the right to ignore them.
Reminds me of a magnet my sister gave me for my fridge. It says "You can either agree with me or be wrong!"
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Black-cat, my ego is not bruised in the least. Again you are resorting to irrelevant personal insults to make your point. (grandstanding and acting like a drama queen). Please keep to the subject matter which is people not being supported here and leaving as a result. The only feedback to your post that counts is the person needing support being upset and considering leaving as a result. The part of your post that needed editing was the parts that upset Chilli.
The point about biopsy and documentation is the same as in any study, to show the good and the bad. If things go wrong or the treatment is not acting as expected then this will be on record. Since the chief complaint about alternatives is the lack of research, this would at least be one case study that has been witnessed by an oncologist, whatever the result.
Again, this thread is about FEELING SAFE here, not who is right and who is wrong.
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Joy, this thread is not benefiting Chilli. How many times have you made mentions of certain death, self destructing and suicide. Do you want to think about that?
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What you are posting is very destructive. Not cool, Joy, not cool.
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This thread could benefit Chillipadi if it persuaded one person to think of the emotional impact their words have toward the very ill and vulnerable. I don't know the history between you and Joy, Black-cat (and I don't want to know), but I personally find your posts here and on Chillipadi's thread to be destructive and not cool. You are, of course, free to say as you wish, but I am also equally free to respond to that. Peace.
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One point that is important to make is that Chilli did go with alternative in the first place - that's how she ended up in her current situation. Choosing not to have surgery in favour of an alternative diet is dangerous. I support her in choosing her current treatment because she has no other choice.
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Sue, I was pleased to see your warm emotional support for Chilli. Meanwhile, this thread is not about one person, we need to make this a safe place for those pursuing alternatives and the problem has been happening for years with many leaving. Those women will still be using alternatives but without the opportunity for more moderate members to make friendly and tactful suggestions in case they're willing to compromise.
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I rarely post in the alternative due to the naysayers. I know of a lot of wonderful alternative bc ladies, who left bco due to harrassment for choosing alternative. It would be nice to have a place where those who choose alternative could discuss alternative medicine without someone criticizing you. It would be nice if the mods would put up a notice under the alternative that this site is for those choosing alternative medicine or with questions on alternative medicine. This is not a site for those who are anti-alternative medicine. We too are cancer patients, and need others to be sensitive to our plight and choices. And for someone of us conventional medicine doesn't work.
Joy...thank you for keeping the alternative forum supportive and balance. Thanks for having our backs. Thank you for caring!
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Thanks for your support Eve. I'm wondering if I should have put this in the Comments and Suggestions forum as I'm serious about my request. I'd prefer some response from the mods that showed they realise there is a problem and are taking the matter seriously.
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I second what Evebarry says about you, Joy. Perhaps the discussion can continue.
In the meantime, I wonder if support for Chilli can continue here:
http://community.breastcancer.org/forum/121/topic/789029?page=1#idx_1
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What happened on Chilli's thread was emotionally devastating to those of us who DO HAVE BREAST CANCER, who got a rotten deal and are very RAW !!!!!
I was looking for Chilli's words last night - because I want to make them my own, that's how super precious they are - and could not help noticing how upbeat, encouraged, happy to hurt if it meant healing she was and tears were rolling down my eyes. I really really hate to think how she must be feeling today and it makes me very angry.
Chili: By the way, I'm not courageous at all. I'm just pissed off with the cancer and with the turn my life has taken. I feel that life owes me, big time. I want to wear pretty clothes again. I want to be able to go out whenever I feel like it. I want to travel. I want to dance. I want to look attractive, or at least decent. There are so many things I've been cheated of, and I'm not going to take this crap any more. I'm also hoping to find a solution which can help others with BC. I already gave conventional medicine a good shot for 3 years, but it failed me. There has to be a better way for all of us.
Moderators, if the skeptics whose only mission is to disrupt are permitted to post on BCO then, at least, please, for everyone's sake, don't allow them to post on the Alternative Forum. It has been workable for Stage IV ladies, it should also be for those of us who wish to discuss in a peaceful manner.
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My husband has a pretty good theory about the naysayers, browbeaters and bullies. He says that vicodin (or oxy or roxanol...or pick one of the 27 other feel good meds that they're on) makes for filterless posts.
Just like in real life...people who are high or drunk say things they wouldn't normally say...and just like in real life, you can't take back mean spirited comments. Once it's put out there someone will remember them long after you've sobered up or the Moderators deleted it.
Simple life Lesson here: Stay off the junk for at least 6 hours before you post your negativity.
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Kat - that's a bit rude - I am never ON anything and resent the suggestion. I doubt anyone else is either. I think you are being a bit judgemental.
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I found this on PubMed though it's a bit old. It says in part;
J Public Health Policy. 2000;21(4):447-70.
The ethics of alternative medicine therapies.
Clark PA.
SourceSt. Joseph's University, Philadelphia, Pennsylvania, USA.
Many physicians dismiss a patient's questions concerning alternative medicine because the physician believes it is "quackery," without any proof to support this claim. This violates the patient's right to full disclosure of all possible treatment options and encourages patients to use these therapies without their physician's knowledge. As a result, it is estimated that 46% of those using alternative medicine do so without the supervision of their primary care physicians or alternative medicine practitioners... Ethically, consumers have the right to use alternative medicine therapies as a matter of autonomy, but they also have the duty not to harm themselves.
I realise that both individuals and medical workers have a duty not to harm themselves but I don't think it's a law. Often people are harmed by conventional treatments so again it's about risk vs benefits. The point is that it's ethically wrong to treat people differently and they certainly don't deserve to be patronised or insulted.
This brings up the same point I've been making, that they are driven to use alternative treatments without any supervision or the offer of a compromise.
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Kat, I don't think most of the skeptics are on heavy treatments. I suspect they just fear for our physical welfare without taking into account our feelings or that we're adults capable of thinking for ourselves. I have no doubt their intentions are good, but the outcome tends to be the opposite of what they intend.
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I'm sorry Joy, but I don't agree with your assessment, their actions are inexcusable. I do not believe they have our best interest at heart, otherwise, what happened would never have happened. They will continue to behave this way as long as they are excused for their abominable behaviour and their nastiness endorsed
According to Websters' Synonyms to ABOMINABLE
abhorrent, offensive, appalling, awful, disgusting, distasteful, dreadful, evil, foul, fulsome, gross, hideous, horrendous, horrible, horrid, loathsome, nasty, nauseating, nauseous, noisome, noxious, obnoxious, obscene, odious, rancid, repellent (also repellant), repugnant, repulsive, revolting, scandalous, shocking, sickening, ugly
Antonyms: innocuous, inoffensive
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I think it can be really difficult to draw the line on this.
If I came on here tomorrow and announced that I had decided that my onc is a quack and femara is of the devil, and that from now on I will treat my cancer by banging two sticks together 20 times every morning, a blue stick and a green stick, because this old lady in my neighborhood told me it was a sure-fire remedy against cancer and had cured her aunt, then what?
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Your call Momine, nobody else's business
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Yes, Maud, but "nobody's business" would include positive reinforcement of my plan, wouldn't it?
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