How can we make this truly safe, supportive, judgement-free?
Comments
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Maud, I only meant they have our PHYSICAL welfare at heart. That's because they don't think alternatives work and they may be right in many cases. I don't think many conventional therapies work either. Both may prolong life. Both may cause harm. We need to respect both modalities.
Can you please not use those words as it will just end up with more deletions and maybe having the thread locked? I'm trying to keep this thread respectful.
Momine, I might doubt your sanity. But you'd still be entitled to bang your sticks to your heart's delight. And yes, I'd be worried about your welfare, just as I worry about some on here. Once I've expressed my concerns as kindly as possible, I have to step back and let them be.
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No, you confuse support with minding one's business
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I honestly believe that pretty much everyone here has good intentions at heart, but everyone feels so strongly about their beliefs that it can cloud how they react to choices that are different from theirs. In reference to the thread, I believe that the naysayers are concerned that the OP will cause herself more harm, while doing nothing to fight the cancer. I honestly think that is where they are coming from. However, I think that they have made their point clear, so they should just step back and respect her choices. Period. Telling someone to just give up and prepare for the end isn't helpful, either - I sure as hell wouldn't want to hear that. At some point, you just have to respect what the other person wants and leave them alone.
For example, I don't agree with people who say diet doesn't matter with BC, but I don't continuously get into battles on threads where people talk about going out for beers and nachos. If they want to eat beer and nachos, that's their choice. If someone comes on who doesn't want to do any conventional treatment, I'll spend a bit of time encouraging her to consider an integrative approach, but if she still doesn't want to do it, then I just stop posting. Not my business or my life.
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Joy, I will exit this thread, as I am presently very disturbed and extremely angry. And if your purpose for starting this thread was to excuse the bullies' behaviour, then it's your prerogative, but I doubt that Chilli and many others in fact will contribute to it.
ETA: I really don't see where you're coming from as you've had a few of your own posts deleted by the mods on this thread....
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Oh, and heehee, Momine...where can I get those sticks? And what shade of green and blue?
(You make a good point, though - a recent alt poster was really reaching for some super "out there" treatments and I think a lot of alt friendly ladies tried to dissuade her from them. Sadly, the whole thing got pretty ugly and I'm pretty sure she is gone. But for a while, the conversation was pretty respectful.)
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I don't think JLW is trying to excuse behavior at all - just trying to encourage a more respectful approach to alt treatments by understanding everyone's perspective.
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You can't be the thought police.
The moderators can protect people from attacking other people, but you can't prevent people with ideas different from your own from expressing them. Nor should you want to, as you never know what you or anyone else may learn from a healthy debate.
Seeing the way the Stage IV forum is labeled "ONLY" gave me an idea. One solution might be to create a sub-forum for individual journeys on specific alternative treatment plans, like that Chilli and Kat, and request that only positive comments or serious questions are allowed in that section ONLY.
But if people have concerns about what the various alternative treatment protocols and their safety/results/outcomes, there is nothing stopping them from creating a thread in the general Alternative area, and not mess with the personal diaries. That would solve the very limited problem without the law of unintended consequences rearing its head.
I can only speak for myself when I say I wouldn't want to bother taking my time to post a question, looking for both positive and negative feedback and get a bunch fo Stepford Wives cheerleaders type responses, you know? And for the life of me, except under extraordinary circumstances, I can't imagine why anyoen else would either. As long as it doesn't get personal, and no one attacks anyone, I wouldn't want to see just single-minded thoughts.
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I'm not excusing anyone's behaviour Maud. I've been very open about my feelings about all the emotional harm done. I'm looking for a way we can all get on peacefully with each other and I don't think that can happen while there's no understanding or acceptance.
People are different, but not wrong or bad. That just takes us back to blame and judgement. Peace, please.
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Kat,
Safe and supportive swings both ways. Since your husband is, I assume, unaware of what meds people take, the conclusion he reached is unfounded. Additionally many people take these meds as needed for very real pain (my stage IV sisters know this only too well). They are not high and this is not "junk". If we truly want safe and supportive, comments which paint groups of people with a broad and negative brush have to stop. -
Kat, really glad to see you on BCO, but I doubt that, like me, you'll stick around this thread
Joyce, just edited my post above - furthermore, this thread should be moved in the comments section.
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Maud, I've only ever had one post deleted in three years, and not because it was insulting. I merely quoted the personal insult directed at me, which was deleted later.
In regard to someone else, a dissenter who judges others for their lack of crtical thinking skills yet doesn't mind using Ad Hominem attacks to try to discredit others, merely harms their own credibility.
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it'sjustme10, the personal diaries idea is worth considering, though I always thought the Alternative section was a sub-forum of the complementary section created to provide a safe, judgement-free space. I once suggested a debate section and a serious section that would be more protected.
Thanks for addressing the subject of this thread. Any more suggestions anyone?
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Sweetbean, I really do think it is a difficult issue, and I am not in any way trying to be a smart aleck with my example. I don't think it should automatically be taken as "unsupportive" or meddling if someone dares question a treatment. We are always told to question our conventional doctors and their treatments. It seems the same should hold for alt treatments. Perhaps all the more so, since they are less likely to have been thoroughly tested and vetted.
PS: I have never taken any vicodin or similar drugs.
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Joy, you've already hit me and Kat on the fingers for expressing our thoughts and you've had your very own post deleted by mods on this very thread. Double standard.
This thread will go nowhere (achieve nothing) because you'll be missing input from the individuals who are most concerned.
I'm out
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We'd like to perhaps suggest that those members who really disagree with the use of alternative forms of treatment not participate in the discussions in this forum.
Again, we sincerely encourage all members to consult with your physician team before selecting your treatment.
Thanks,
Your mods
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I've been following this thread - and the other referenced threads - and thought I'd throw my two cents in for anyone who cares to read.
We are all different and have unique situations. Our beliefs are our own, as are our fears and concerns. I can try to understand what someone else is going through, or thinking, or hoping for, but I can never know the true depth of their experience. My support for others is not about what they are doing, but that they are doing what they feel is best for them, given their situation and beliefs. I wish everyone - regardless of their treatment choices - peace and healing.
One recent poster (who has now left BCO, I believe) came here with a multitude of what really sounded like odd treatment ideas. She had lost family members after surgery and wanted to avoid "medical" surgery but was interested in "psychic" surgery. She was looking for alternatives that fit her holistic approach. At one point respondents began to question whether this poster was actually a troll because her ideas were so "out there." She was fearful and desperate, and could not find the support she needed here so she left. I don't know that anyone would have or could have supported some of the ideas she was exploring, so perhaps BCO was not the best place for her to be. It must be awful to want so badly to try anything, even unproven or dangerous treatments, that you will put your life in jeopardy to try to save it.
I guess my point is, there comes a time where we have to agree to disagree. I can't see the correlation between choosing an alternative therapy and "driving off a cliff" as someone pointed out, even if it would appear to everyone but the poster that the alternative therapy is not a good choice. It is still their choice. I would express my concern for the well-being of the poster, but I can't attack them for their choice.
I am still an "early girl" and have chosen conventional treatment coupled with lifestyle changes, and I am truly interested in and fascinated by the alternative treatments I am reading about. Perhaps I don't belong in this conversation, I don't know. I'm trying to learn, though. I cannot begin to comprehend what someone with Stage IV is facing, but when someone tells you you're at the end of the road, conventional treatments are no longer working, surgery is not an option - do you give up hope? What lengths would you go to for another chance?
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Moderators, thanks for your response. I hope this will be followed up as I will certainly be reminding people of your words if they continue to post anti-alternative material on our sub-forum.
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Since last night I've been humming and hawing about adding my two cents. To answer your question on your OP Joy, you can't. If someone doesn't agree with a treatment choice, there's a rational, kind way to say it if you feel the need. It was competely obvious to me that the woman came onto that thread to cause sh*t, as she didn't even have the facts or bother reading about the situation before she commented. Boredom, revenge, ego, not sick enough to empathize, I don't know what her/his problem is....but she/he does have a problem. I went back to read many of her/his other posts...that's just the MO. It's becoming clear to me that maybe that post I read about the mods actually being members might well be true. What other reason could there be to let a post like that stay, especially when the forum clearly states "judgement-free". Also her/his post providing a link to a product is also still there...a clear violation of the rules. There is clearly an agenda here. I haven't figured it out yet, nor do I care anymore. Let's just say she's lucky she didn't send me a pm calling my treatment a scam or plaster it all over the board. I wouldn't have been as nice as the OP. I feel bad that I sunk to that level to even acknowledge that unbelievably insensitive, cruel comment. I'm sure I hurt the OP and her thread in the process by even commenting and causing the thread turn into a gong-show, but such a sick comment cannot go unanswered. Those who know me well know that I've had success with an alternative treatment so B------t, bring it on. Send me that pm telling me what I'm doing is a scam. I'd love to hear from you. I'll keep you off ignore for the time being in case you decide to take me up on my offer...or you can always use that other option of having my post removed. From what I've gathered about your charming, I know-more-than-you-do personality, I'm sure you'll choose the latter.
And Joy, since I'm rambling...again, you can't stop these people from posting, and it's unfortunate that they have to be called on it because we all know where that leads, but it is what it is. You can either "ignore", which I wish I would have, or stick up for the person being harassed (and yes, calling someone's treatment a scam, whether it is or not, is harassment because everyone has the right to choose whatever the hell they want for THEIR situation). Some people just have that big-know-nothing-know-it-all-I'm-better-than-you complex that makes them insensitive to others needs and situations, and there's a lot of them on this board. (for me 100+ on ignore and counting)...but for sure, this last one takes the cake...I don't think he/she is going anywhere. They'll blow in from time to time to satisfy their ego and all we have is choices about how to deal with it.
ETA: For the record, I'm not adverse to hearing what doesn't work just as I'm pleased to hear what has...but you don't have to do it in a derogatory manner. Keep in mind that some on here have no other choices and screaming "SCAM" and "THIS WILL KILL YOU", doesn't help anyone unless you have first-hand information, not a bunch of quackwatch links and my friend's brother's girlfriends cousin crap.
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All treatment choices have risks. Pretending that they don't is dishonest.
Some treatments cause debilitating side effects in the short term, and other life threatening diseases in the long term. With some treatments, the risks may include being ineffective, and those who are genuinely concerned about that may become overly focused in their insistence that only "proven" protocols are followed.
The problem is that the "proven" protocols were at some point experimental or alternative, and some of those treatments that are considered alternative today may at some point in the future become the standard. At that time, we will consider today's treatment in the same light that a Halstead mastectomy is seen today, barbaric overkill that was considered the best available at the time.
My DH was watching a news program yesterday that discussed myelodysplastic syndrome, or MDS, and was shocked to realize that it can be caused by chemotherapy. His reaction was "Oh, that's what you meant when you talked about chemo causing other cancers" He obviously thought I was being overly dramatic when I mentioned that as part of my decision making process to skip chemo. He did know enough to let me make the decision, rather than weighing me down with his worry. More than 4 years out, we are both very happy with the treatment choices I made.
I hope that each of us posting on a support site, especially in this alternative forum, can remember to always support each other as we make very difficult decisions. The support we give each other is far more important in the long run than winning or being "right" about any specific point.
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I have pretty much stayed out of the discussions but do follow many of the threads referenced here. I have to say that the rudeness totally goes both ways. I basically read from one altie that I have chosen to die because I have chosen conventional treatment instead of alternate.
I agree with JLW that there should be a way to express opinions without being rude and denegrating others. And once you give your opinion, backing off because it's not your life and the treatment choice is not yours (that's the royal your btw).
I keep my mind open, but I have many factors that say I should NOT have BC (kids in my twenties, all breastfed, no BC, no alcohol, no BRCA1 or BRCA2) but I still have it and was IV from the getgo at 47.
So I'll stick with the conventional that has kept me alive for almost two years for now and see what the future brings for everything else.
I keep my options open for alternate ways when I might need them in the future so I like to follow the alternate threads for this reason. -
How can we make this truly safe, supportive, judgement-free? Two words......You Can't.
We are human and that is one of our flaws.
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Gracie.....WOW! That was pretty scathing and judgemental in itself!
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Agree that we can't make it 100% safe and supportive but maybe this thread will just remind us that words can be painful weapons and really think about not using words that wound before you hit the submit button.
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Gracie, yes, I also thought that calling someone's treatment choice a sham etc was hurtful. The mods have just asked such people not to participate on the alt threads so if they uphold that then we should finally be left in peace. I see those members are not on this thread any more so I'm hopeful things will settle down.
Nancy, The other member you spoke of is still on the forum and fortunately BCO caters to all as she is surely one of those who needs support more than any. We can't interfere with her treatment choice but by befriending her maybe some good can come from it and her ideas may change in time.
Well I'm off to bed now. It's been a long day and hopefully I've achieved something.
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Bluedahlia, Why? For commenting on the person who had no idea of what the OP was going through and just had to dash her hope? Maybe there's something I'm missing and you can clue me in...I'm not trying to be mean here, I really do want to know. I might have to apologize if I know. I admit to being in a bad 'head space' today.
Edited to clarify who I was responding to.
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Please, do not put people down in this discussion. We will be forced to lock the thread if you can't keep this a calm, respectful conversation.
Thank you for your understanding,
The Mods
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Joy, please send me a pm to let me know who the "other" member is. Now I'm confused.
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Thanks mods. No put downs, period.
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Never mind Blue...I see both of our posts have been removed anyway...and Joy, now I know who you mean with your edit.
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Sorry Gracie, I got your names mixed up, I just edited the post. It's late here in Aus and I should be in bed.
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