New Trial (for me)
Just wanted to take a moment to say goodbye, as well as to thank every woman who came to my topic with supportive comments as well as those who've shared links with information. I kept what I could for future reference.
I don't feel the Alt forum is as "judgement free" as it should be, but I did glean a few useful facts.
I have PMs from some and emails from others...and it's primarily due to an email I received from a member that's scaring me away. Essentially the person said they're glad to see me gone and that they helped engineer getting me gone with certain board staff. They mentioned no names and I make no accusations but, now, I'm nervous /afraid.
The mods have advised me to not use the forum if I feel it isn't benefitting me and it's decent advice and I'll follow it.
I'll try to return a few PMs but as I seem to be permenently on PM restriction I don't know if I can work it out.
Anyway thank you for trying to help and support me.
My life is trying and as per my topic title it'll be a new trial for me going on alone.
Take care and be well xx
Comments
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Geezus Cee. I'm so sorry you got an email like that. There really are some truly disgusting people in the world....sad truth. It takes a special kind of ugly to say something like that to a fellow victim of cancer. You know, ultimately, the universe unfolds just as it should. Good things come to good people. Horrible people end up alone. Please take care of yourself and know that there are several people here who wish you the best.
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Although I did not agree with your characterization of those who use chemotherapy drugs as foolish - I am sorry you were the recipient of an aggressive email. There is no place for that. Sadly, some in our world choose private attacks through virtually anonymous means to spew hatred.
How did the author have access to your email? It's always best to keep our information private - especially when on a public forum. Eventually one might feel comfortable exchanging something outside of BCO - but like all public forums, you do take risks.
It's possible to make some lasting friendships and contribute in support and encouragement here. I've met some BCO members in person, exchanged cards, spoken on the phone, and emailed and face booked. But each (with the exception of one) came after months, and in some cases years, of knowing them.
The best to you.
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Awww thanx ladies.
Leggo I agree...karma you know.
Dith, please understand my statements were not directed to anyone in particular, and they were made on the totally Alt board.
But I guess you can empathize with how I felt when certain others characterized me a certain way...directed to me specifically. It hurt.
I did give my email to some and generally have never had anything like that happen before.
I'm open and trusting. Your way wouldn't work for me. Different strokes and all...
I'll try to slog through pm's this week. I hate feeling like I'm ignoring anyone who took the time to write me.
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Im sorry to read this. Hope you realise you were just challenging someone elses beliefs or fears. If they were completely sure why bother with absolute false.
This should be a place for everyone and I feel like its not right you have to leave.Hope that person will apologise and you find a way to stay anyway.
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Done.
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This is awful. There is no point IMO in having an Alternative Medicine forum here if those who believe in and are using alternative medicines are chased away but I understand Cee67's decision. Support groups are supposed to be supportive and I've often felt this board is less than supportive of the members it seems to have been designed for. Of course that maybe because people using alternative medicines don't feel comfortable herenand leave. Sort of a vicious cycle. I do hope Cee67 can find a way to stay because we IMO need more members here who support our individual choices and no one should feel they need to go it alone.
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I think you have to accept that BCO is a traditional medicine site and move on.
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I agree with you wrenn. Despite the initial part of the forum header, the last sentence states, in bold face, that bco does not recommend or endorse alternative medicine. This not exactly an open armed welcome and if I were looking for support for alt therapies this would not be my site of choice.
Cee67 seems like a very sweet but fragile person. If comments on a message board induce an asthma attack severe enough to send her to the ER, then taking a break, for the sake of her health, seems like a good thing. I realize that this is my view, but if I were that fragile, a public message board doesn't seem like the best place to be. With a multitude of opinions, personalities and approaches to dealing with bc, we have probably all read posts which rubbed us the wrong way. You can't let a message from a cyber stranger get under your skin.
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Is it necessary to share your armchair analysis of someone? Even if you had the expertise to do so (which I'm assuming you don't), how does that offer anything useful? I'm not an alternative kind of person myself, and it's clear that you also aren't (since you tend to comment there and make it clear), but why go to the trouble of saying this? It doesn't seem helpful, necessary, or kind.
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I don't feel equipped to determine Cee67s capability or strength regarding what she can manage so you know something I don't to be able to come to the conclusions you have....no matter how sweetly you present them. There is a lot of judgment, condemnation and basically arrogance on this thread.
It was incongruent for BCO to have created the thread in the first place given what they have allowed to go one here. It would be like me going to Fox News and telling them they should be more intelligent and open minded and then insulting them for not seeing the light and coming on board with my way of thinking.
the behaviour on this thread is repugnant and I am stepping away for my own peace of mind. Have good sleeps all.
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Iwill be blunt. Cee has said she is fragile, her husband wrote a post about her fragility and about how a comment or comments had threatened her emotional well being. She herself posted that her trip to the ER for severe asthma was induced by stress from bco comments. No, I have no professional expertise in mental/emotional health (but sadly, too much familial experience). So although we seem to be tip toeing around it, why, if you were in such a fragile state, would you put yourself in a position that threatens your emotional stability. This forum is not only not meeting her current needs, but appears to be harming her. BTW, this takes no expertise, just a reading of all of cee's posts. Her history is heartbreaking and she has my deepest sympathies, but at the risk of belaboring the point why put yourself in a position to be emotionally distraught over a message board? Is this or, any message board, worth more than ones emotional health?
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I'm assuming Cee is an adult, who is capable of making the determination for herself about whether this forum is helpful for her. I'm also guessing she is in a better position than you to evaluate her own needs and how best to meet them. For what it's worth, I have extensive professional experience in mental health, and it would never be appropriate for me to address that in a forum such as this (or outside treatment). I've noticed that you seem to feel compelled to comment on posts with which you disagree, and to attempt to frame them as expressions of concern, when they actually come across as quite passive-aggressive and smug. Your concern is whether this forum is meeting her needs? Sorry. Not buying it.
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I too have grown weary of the expressions of so called concern. Your comments to me have always brought up an image of a six shooter with a nice pink bow tied around the muzzle.
And, maybe we don't all need to be 'taught'.
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Oh good G-d! My concern is that no one should need to go to the ER because of comments they read on this forum. It is quite possible to be be nice and honest at the same time, though pink is not my favorite color. This is raising my blood pressure a wee bit so for the sake of my own health I won't comment further (as I said, no message board is worth it). If you have grown weary of my expressions of concern, you know where the ignore button is!
I know I'm not everyone's cup of tea -
I also have an extensive background in mental health. Fragility is something that can be beautiful and is healthy to share in a "safe" "judgement free atmosphere". Fragility is not something that is safe for people who use alternatives to express on BCO. It is jumped on like a lone seal swimming in shark infested waters. Why is it safe for those on conventional threads to be and feel safe expressing their fragility but not safe for women on the alternative threads?
Certainly members that use alternatives can't tell women on conventional threads what they really think about their choices, the credibility of pharmaceutical companies, or the cancer industry. That would be wrong, hurtful, and judgemental to them because it does not support nor respect the person, their feelings, and their choices. It would be wrong to talk down to them. It takes courage to share with anyone about breast cancer. It can be terribly isolating if we don't find someone with whom to share. We are all fragile.
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Hi Ladies,
I took a few days away to think about things and come back today to find your replies.
I honestly have no words right now. I want to say something grandiose to give back to you, for what you've given me, but, all I can find to reply is, thank you.
In every aspect of my life I have always given a second chance, for that is what I would want if there was an upset between me and a friend, and in that spirit, I have decided to stay and give the forum a second chance, imperfect as the Alt section is.
It's not that I have anything earth-shattering to share with you but, this was a nice place to just write, and when others comment that things I've posted have helped them in some way, even if to just let them know they aren't alone, than I've done something helpful, and it makes me feel good.
Okay, maybe I'm fragile. I wasn't always - I was pretty forceful and strong, but cancer has weakened me some. Not only that, my fragility has everything to do with my appetite, or lack thereof. Last year at this time I weighed 145, grudgingly carrying around that extra 20lbs of perimeno weight on my small frame.
Today, I'm 105, and I've gone steadily down since last July but it was January when I first sought help for my appetite. It's when my cannabis backfired (likely because I was so thin and weak) and I went to the ER. My labs returned swimmingly normal and they sent me home. No one was worried about 5'3 112 lbs.
The day after my asthma attack I was in the ER again, now at 105 and still, labs came back perfect and I was sent home. Nevermind that now I'm as weak as a 90 year old and napping just as much. I will never make it to the Renaissance Faire being this weak and if I miss that I'll want to toss myself off a building LOL!
I am 1/2 Italian - I love to eat! I miss eating. I miss eating out in nice places. My tummy growls but there's a peculiar disconnect between my stomach and brain. Yes, I feel hungry but nothing smells good or tastes good and I am full after a few bites. If I try to eat more I'll throw the whole lot up.
Plus my asthma has me coughing so badly that shakes up the gut and isn't conducive to eating. Sometimes the coughing makes me vomit.
Saw my GP last week to request a referral for a new oncologist (City of Hope is no more) and we discussed my appetite. HE was the one to bring up my weight loss and it was like rain to the desert!
I told him of the ER's telling me to "just go home and eat." Gee, don't you think I'd do that if I could??? He shook his head and smiled and said that cancer is a funny thing and that there are various reasons why cancer patients can have trouble eating. I asked before he suggested, for a PEG (feeding) tube. I don't want it, but I feel it's necessary, or will be in the future.
While I wait for the autho on that, he gave me Reglan and said it can stimulate the appetite. It did for me...for 2 days - then it quit working. My vet suggested mirtazapine, which I've heard can be a good appetite stimulant (though I'm concerned to begin and antidepressant). But I read on drugs.com that mirtazapine is a tetracycline-based drug and I can't take tetracycline as I'm allergic.
So I went to my freezer today and got out my pot cookies and took 1/8 of a cookie, and an hour later, 1/8 more. Eating cannabis is a pain because one never knows how much they'll need and it takes a couple hours to work. Well, I was high and sleepy this afternoon but...hungry. Very very hungry!
I haven't eaten that well or had food taste that good in a long time! I am going to take 1/8 of a cookie tomorrow - just once - and see if I can lessen the high but keep the appetite.
I am a work in progress!
Regarding my asthma, I've had it all my life, and I have an unusual form called "cough variant asthma," or, just, "coughing asthma." It's like having a smoker's cough without ever having smoked. A chronic dry cough like bronchitis. It's poorly understood and they use regular asthma drugs like albuterol to treat it, with little success in my case. Those drugs open constricted air passages, which I don't have. My lungs just feel ticklish. I have to avoid the common cold like the plague - I get the cold for double the time of most others and then I cough for WEEKS afterward! Ray has the wheezing regular asthma, but he reacts the same way if he gets a cold.
http://www.m.webmd.com/a-to-z-guides/cough-variant...
It isn't difficult to set this cough off, so yes, if I get upset, my lungs will spasm and I will cough, for days. So yeah, I am fragile, and I don't believe I'm the only person whose ever been upset by comments on a forum.
Back to fragility... I know I'm about to repeat what earlier posters have said but, isn't this where we come to BE fragile - to get support - to cry on each others shoulders?
I felt very alone when I first came here. I felt that if anyone could understand my plight and the accompanying sadness and emotional tumult, it was the women here. Instead, some feel the need to attack me and others in the Alt forums. I don't know why us choosing other avenues of treatment is so threatening to conventional adherents. Is it because of what they've endured on the traditional route, and now they don't want to see us succeed because if we do, what does it say about their choice?
That is MY armchair dx this evening.
I will repost the tx regimen my naturopath gave me in a future post so others may benefit. I am currently off ALL supplements until I get my feeding back on track. I can't swallow all those pills - they just make me gag, so if I get the PEG I'll crush them and take them that way...and the nasty liquid ones as well so I don't have to taste them.
I am hoping my 2nd opinion will be approved for the UCLA Medical Center. This request was STAT, but my ins is not know for their speed. I'll let you know how it goes.
I'm having friends over tomorrow but after that I'll get back in here and also start working on PM's. I will also try to peek around other topics here. I simply don't have a lot to offer in terms of advice, which is why I stay here mostly.
It's probably time to take some footsteps into the stage IV forum but I do realize not everyone can post there.
It is so good to hear from you, as well as meet some new names!
I will be back soon.
Thank you gals again, so...very...much xoxo
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Ladies, please click on "Community Rules" in the gray area at the bottom of this page and review the Rules of Conduct. If I understand correctly, personal attacks are disallowed and policing of posts and posters is the role of the mods, not individual members. Members who are offended by someone's post are directed to ignore the post, block the post or the poster, and/or report the issue to the mods. When we joined, we all agreed "not to use words that intimidate, isolate, attack, accuse or degrade members."
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Brookside Vt.....I do HOPE you are the CALM in this STORM.....Liz -
CeeCee - I don't have any experience in Alternative Medicine, but do read many of the posts on the forum because it does interest me. I just want to let you know that I have enjoyed reading your posts. It almost seems that you are sitting in a chair talking with me. I hope that you will have success in getting in with UCLA.
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Cee, I am glad you are back, and I am very interested in seeing your Tx plan. In addition to taking Tamoxifen, I'd like to create a cocktail of treatments (repurposed medicines as well as natural supplements), esp. after viewing "Surviving Terminal Cancer." I was on Metformin but my MO took me off. I regret telling him. I really wish I could find a good integrative oncologist where I live. We do have to be our own advocates--that was quite clear from the film. Most traditional oncs use traditional monotherapy--that practice needs to change per the film and in IMHO.
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Hi Cee! Good to see you posting. I was more than a little worried.
Katcar, you don't have to answer me if you don't want tto, but why did your MO take you off metformin?
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Katcar, I agree.
Leggo, possibly because the studies that are ongoing are not showing benefit (short version).
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Hi, Cee!
Thanks for the update on your health. I, too, have lost weight since my diagnosis. I think it's partly from the medical marijuana - it actually suppresses my appetite.
I hope you continue to post and if you decide to take a break, I hope it's a restful and soul-nourishing one.
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Message board? I guess that's true, but I thought BCO is also to be about support. Various studies show women with breast cancer who belong to support groups (online or regular) tend to live longer-but one imagines only if their support group is supportive. Personally, we have a group that meets at the YMCA here in town, at 11:00 a.m on Thursdays-doesn't do much good for those of us who work! So here I am, hoping we can all be supportive and since I've now rejected the last part of conventional treatments this seems to be the board for me (along with the CAM board). I don't go to the tamoxifen boards or AI boards and go on about the horrible side effects and problems with these drugs. I just don't get why so many who are obviously not supportive of alternative choices come to this board. But I'm pretty new here and this seems to be an ongoing thing. I just try to take away the good and ignore the negatives. Glad to see Cee67 back, and hopefully you can find support here and figure out a way to tune out the negativity of some posters. There are bad actors everywhere I guess.
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Leggo, When my MO saw Metformin listed among the things I was taking, he asked me why I was taking it. I think he thought I was taking it for another health reason. I told him about the cancer studies I had read. He said to stop taking it as he did not think the potential side effects were worth it. I sensed with him that he was not impressed with the study results so far. I don't know anything else specific. We had so many other things to discuss, that I did not push him on it. And, unfortunately, he's not the guy to pursue anything with outside of the NCCN guidelines.
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Katcar, thanks for explaining.
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Leggo, check out the link I provided on the thread about the Metformin trial, if you have not seen it already.
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Thanks Katcar. I forgot about that thread.
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Cee glad to see you are back, I think posting might be cathartic for you, and I really hope it continues to help you as you deal with this. I have also found your thread to be very informative, so thank you for that.
I just wanted to comment on the asthma. My daughter also suffered from the "coughing" type. She never wheezed, so a lot of doctors didn't take it seriously, and for that reason she ended up being hospitalized for a week at one point. This was many years ago, but what helped her was being put on preventative medication, which she inhaled every day through the "puffer", even if she had no symptoms, instead of waiting until she got a catastrophic attack. Not sure if you have tried that route.
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Hi Ladies,
I will be back because I have comments to reply to most of you but I wanted to address Deb:
You're the first person who even KNOWS what I'm talking about. My doctors don't take it seriously either. But I have a new GP - the one who also addressed my weight concerns. He gave me an albuterol inhaler and a "spacer." For anyone who doesn't know what that is (I didn't!) it's a chamber you shoot the inhaler into. The chamber holds the mist and lets me breathe it in slowly; unlike an inhaler alone where I have to take a sharp intake of breath, which I can't do.
I'm on albuterol around the clock, every 4 hrs and still coughing like a SOB LOL! I just received my autho for a pulmonary MD so maybe he can help.
My coughing can also be triggered by food. OJ does it so I thought I had a citrus allergy but I can eat oranges til the cows come home with no issues. I can't drink lemonade - it causes tons of mucous and coughing. When I was little I adored Hi-C and Hawaiian Punch - remember those? OMG those red fruit punches set me off for days! I thought maybe it's the high fructose corn syrup but...I can drink Pepsi which is loaded with HFCS and it doesn't do that.
It seems whenever I eat anymore I'm coughing so maybe a food allergy test is in order. I coughed for about a week after my upset here and eventually it lessened...just in time for us to have weather in the 90s here (100 tomorrow YIKES it's not even April!) so now the a/c is running and my lungs hate it.
I live in an apartment and they change the air filters 2 x yearly but it doesn't help. If we manage to buy a house I plan to make carpeting persona non grata because I think that's partly to do with it.
I'll be back ASAP - I'm on pot cookies and they definitely help - I was 104 and now I'm 105. It's not much but Rome was not built in a day. They make me hungry but also tired, like the oil so admittedly you guys, I'm a little slowwww... *giggle*
Okay, be back soon!
ps:
Funny: My spellcheck wants to correct "Albuterol" with Butterball....LOLOLOL! My laugh for the day and hopefully yours too!
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