A break from BCO
Dear Friends,
I'd like to start by wishing you all a happy, merry everything as we approach the holidays! BCO has been a wonderful place for me over the years and I truly appreciate the support and input I have received.
Some of you may be aware of the fact that over the course of 11+ years I have been the recipient of cruel and unkind pm's asking me to dim my light, not be so happy, etc, because others might think mbc is not so bad. Of course, there was the infamous public post where I was told to shove my bone met up my ass! Yes, those things hurt me and still do when I think about them but that was the point of those messages, wasn't it?
These incidents have been the exception. Most of my experiences here have been positive but I am tired of being made to feel that I not mbc enough due to my lack of suffering.I wish none of us had to suffer, ever, but the reality is that none of us have a whole lot of control over the course of the disease
So, for at least a bit, I need to re-evaluate my place here. I cannot and will not hide my light, my life and my experiences living with mbc but neither can I continue to allow a tiny minority to make me feel bad because of some bit of luck that neither my medical team nor anyone else has control over. I’m usually a pretty tough gal (hey, I’m from the Bronx!) but this has been a hurt that I simply don’t understand. For those looking to inflict hurt, brava, your aim was true.
Again, many thanks and much love to so many here.
Comments
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l don’t know if you will read this since you may not check for responses. I want you to know that I have followed you posts for 7 1/2 years and never felt that you did not have a place here. I came aboard around the time you were being maligned here.
Everyone here should know from their own experiences that there is no single example of someone with mbc. My good days have far outnumbered the bad ones, but I am just as much an mbc patient as everyone else here, and so are you. I assume mbc will take my life someday, especially as the treatment options dwindle. Mbc could have taken my life even if I was still on my first line of treatment.
I have tried to enjoy every day I have been given. Does that make me too happy for the mbc thread? Not in my mind.
I will miss your posts. I always liked reading about all the things you have done snd all the changes that have occurred in your life. Stay happy. Stay positive. I will still think of younoften
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exbrnxgrl-I hope your break is not for too long. I'll miss you on the board. I especially appreciate the thread you created: There is Life Beyond a Stage 4 diagnosis-Really!. It gave me great hope in the beginning. I sometimes find the boards a difficult place to be too. I come mainly for help with side effects and to be in the company of other women with Stage 4 cancer. But I live learned over the years that we are all different and all have different ways of coping with this disease. But there is absolutely no reason for you to hang around if the boards are not a supportive place for you. Continue to be happy and shine your light wherever you find yourself.
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Exbrxgrl, like 50sgirl said, I will miss your posts on here. I have always appreciated you: your posts, humor and the fact that you have had such a good run and stayed NEAD gives me sooo much hope! I am sorry for the negative PM's you received, it is sad. MBC is MBC, even as there are so many variations.
Stay happy and keep living your life beautifully!
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Exbrnxgrl
I am another one who has learned from and appreciated your posts. You have provided information, good advice and hope to many. I respect your decision, but will miss your input.
Happy holidays to you and your family and long may you run!
Eleanora
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Exbrnxgrl: I hope to see you back soon. I cut back on BCO, needed a break from the MBC world. I wish you well always and all MBC sisters.
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tinkerbell-I don't think the Mods read our direct messages from other members. That is the way people have been able to get to exbrnxgrl without being censored. I don't know what was said but obviously it was hurtful.
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Caryn,
I'm sorry to read this. I hope you return for my own selfish reasons: there are so few people here now who were here when I discovered this forum eleven year ago. It's rather lonely for me now. Is this because I'm a lucky survivor/outlier with longtime mets? Or because many of my compatriots have died? Did the IT disaster with this site cause irreparable damage? Or have I aged out of this forum?
I'm eager to connect, but can't figure out with whom or how anymore.
I respect your decision, but will miss you. Do what makes you happy!
Tina
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ExBrxGrl (and Tina2!), I have long enjoyed your posts, and my take away always was that this was how it was going to feel for all of us when the miracle vaccine (or whatever) hits and we all no longer have anything to fear from MBC...
Don't let the haters win.
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Chicagoan: Thanks for the clarification. I will edit my concerns/questions to the Moderators. I received a few PMs that came through BCO, wasn't sure how much censoring goes on relative to posts and PMs.
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For the most part I walked away long ago, for similar reasons. Too many times I asked questions and was treated like I was just stupid. My cancer evolved in a different way from most, because mine was caused by chemical contamination, not genetics or bad luck. The change to the forums was pretty much the final nail in the coffin of BCO. I come by once in a great while to peek in, but not really to post.
I am sorry that you were treated so badly Caryn, I'm sorry to everyone who has been treated badly here by those who think only THEIR cancer matters. This was supposed to be a place to find support, but that only seems true for the ones that are only interested in being supported by everyone else.
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exbrnxgrl- I hate to see you leave our group, but you must do what is right for you. I do hope you reconsider and come back here, at least some of the time.
I hate that we humans compare ourselves to each other, but that is human nature. I have a "real life" friend in my town that has MBC. She is bone only. She just had a scan (she scans every 6 months) and is, as she says, "stable mable". 11 years. And only on Arimidex and Xgeva. I am happy for her, but, also, a little jealous. She is not on a CDK or any other targeted therapy and does not have the fun side effects of those additional meds. I have had people tell me "so and so has your cancer too and she does not isolate and seems to do more than you do". See, comparing. Yes, she and I both have MBC, but I am on Lynparza that causes fatigue and stomach issues and a low white count to make me immunocompromised and I take precautions not to get sick. And I am on Lupron that makes me have hot flashes and the icky feelings of going thru unnatural menopause.
Then I compare myself to others on here. I am 5 years into MBC and only on my 2nd line of therapy. Some have gone through multiple lines and running out of options. So am I "MBC enough"?
Take care and wishing you well.
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I do think a break from cancer support is a good thing for mental health, its the reason I didn't go to my local cancer support center when I was diagnosed with MBC, support is a great thing but at the same time it can if you are not careful make your life all about cancer, so if that is happening a step away now and again is a good idea.
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This makes me sad in so many ways to read this. How can anyone of us that are on here be mean to someone who is going through their own BC journey? I've read some of her posts, new as of last year to this board, and they've helped keep me motivated and going. I went from a 2B before surgery to a 3C after surgery and needed something and someone uplifting to keep me going. exbrnxgrl and others have done that for me on this board. Please just be kind.
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Dear Caryn, Please know that as a fellow teacher and MBC patient, your posts have been a source of wisdom and inspiration. It's good to take a break, but know that many of us will welcome you back whenever you'd like to rejoin us.
Star
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exbrnxgrl - I'm glad you are taking care of yourself. I will miss your experiences and insights as I have always felt they conveyed empathy, knowledge & wisdom. Enjoy your break & have a great time. Know that you have helped many of us who have MBC.
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exbrnxgirl- I understand needing a break, and I hope that's all it is. While you're away, remember that the number of people who appreciate your posts far outnumber those few who find fault (and that's their own problem, anyway). There's no excuse for anyone being hurtful. Sending virtual hugs.
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Hi exbrnxgrl,
We're so sorry you feel the need to take a break. Mistreatment as you've described is NEVER okay in our community and once we are notified of the instances, will always be addressed.
We've just sent you a PM also.
Sending you big hugs and hopes that you'll reconsider.
--The Mods
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exbrnxgrl - I'm sorry that you will be taking a break. You have been a huge support and a wealth of knowledge to many, including those of us who are not mbc. Be well and hope to "see" you again soon!
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xbrnxgrl, I can understand how you feel . And maybe a break for a while would be all you need. Just saying though I don't post much I do sppreciate your posts and other outliers like Tina2. I hope to give others hope like you two.
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exbrnxgrl, this makes me sad, but not in a way to make you feel guilty. First of all, I've always loved your username, partly because I lived in the Bronx for a year (as a Gentile - LOL) and have many good memories of living there. Granted, I was only about seven years old, but I still remember it fondly.
I'm glad you're doing what you need to do FOR YOU. I don't get why people have to be mean. Words can hurt and can have lasting effects. As we (hopefully) learned in preschool, "If you can't say something nice, don't say anything!"
So, know that your comments have always been appreciated, welcome and enjoyed by me any many others.
Love, hugs, and the very best to you!
Carol
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Exbrnxgrl, i am getting over a bout of the norovirus (pretty awful) and just saw your post. I’m so sorry that you’ve been hurt to the point of taking a break here. I thought the mean spirited posts had dissipated awhile ago. I do not understand anyone being that way. I believe everyone’s personal story of living with mbc is important to know about. Each is different yet we all live with the uncertainty.
I agree that you should not be bullied into hiding your light. Yet you need to put your well being first and protect your feelings. Please know I and many others on the forum consider you a friend and a respected contributor to the forum. I hope your break doesn’t last long. Many hugs to you.
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exbrnxgrl i appreciate you!
Breaks are good sometimes.
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Exbrnxgrl- I just saw this post also- and it saddens me that anyone would be cruel to you. I agree with the others that success stories are very important. Life is truly a crap shoot and we don't know what the future brings. An example of living your life well despite your MBC and reveling in your success is good- too many people moan away their good days and regret it.
You could have just left BCO years ago and not contributed, but, you stayed, full of hope and advice- thank you for that.
In the past I have also been judged and dismissed for not "looking" like I have cancer and having relative success with treatments. People seem to gravitate toward drama- and I find myself less and less interested in drama. I love the days when I forget I have cancer.
Happy Holidays to all!!
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Hello friends,
I hope everyone had a peaceful holiday season. I spent about 8 contemplative days in the lovely Napa Valley as I was house/pet sitting for my dd and family. I was very upset about bco and needed that time to evaluate my feelings.
Everything about my bc dx and subsequent surgeries/treatments have been unique. Yes, I know, we are all unique but I have been quite far out of the box in many ways. I've had a port for 11 years (and a complete pneumothorax) yet have never had chemo. I have never looked like a cancer patient. I have never cried or gotten unduly upset over my dx nor reacted in what most people consider typical. I do no special protocols, regimens, diets, alternative therapies, etc. In a nutshell, nothing about my situation makes me very relatable to others. I have tried to not be such an oddball but I always have been one and have no problem with it.
I won't apologize for being odd, quirky and not everyone's cup of tea. I am also human and fallible. I suspect that I will drop in every now and then but I realize that I no longer feel safe or supported here. Not by the vast majority, who have been fabulous, but by a tiny minority who have achieved human p perfection and feel that my imperfections need to be dealt with. So, I reluctantly bid you farewell for now but will update occasionally. Take very good care of yourselves.
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exbrnxgrl, you feel like a friend I've never met. I will miss your posts but understand your choice to stay away. Stay odd and quirky and although I prefer coffee to tea, I'd gladly treat you to whatever you want to drink (including the harder stuff).
Love and hugs,
Carol
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I value your contributions here, exbrnxgrl, but I do understand how you feel. Will be happy to see your posts when you do drop in.
Take care & be well.
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Caryn,
I’m so very sad that you are leaving the forum and will not be contributing further to its conversations and discussions, but I respect your choice. I also feel like I understand your reasoning for leaving. Author Brené Brown writes about the difference between “fitting in”, which is changing yourself to conform to what others want you to be, as opposed to “belonging” which is being accepted for who and what you are, your authentic self. Due to a tiny minority here who’ve unfairly launched attacks at you, you no longer find bco.org to be a place where you belong. You choose to stay true to yourself and leave, and although it breaks my heart to see you go, I have to admire your choice. It’s something that in my personal life I’ve been dealing with; tuning in to where I truly belong by reassessing relationships and situations and finding it necessary to walk away when and where I realize others want me to change in order to be accepted by them. It’s not easy and it happens more than I like but I’ve resolved to be true to myself. Each of us has to decide what's worth our time and energy. That’s why I can respect your feelings about what you need to do to feel safe.
I have always liked what you brought to the forum. I will always look forward to any future posts of yours if and when you decide to pop in and let us know the latest in your life. You’ll always find acceptance with me. I wish you all the best.
~ Camille
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exbrnxgrl,
Sheesh…I don't know why someone with breast cancer would be hurtful to someone with breast cancer having good days. It doesn't make sense. I haven't been here long but appreciated all of your insight and knowledge. It sucks knowing knowledgeable women who have mounds of research to share are shying away from this place. There is so much for us to learn from you guys. Thank you for all of your feedback during my short time here.
I wish you many more good "cancer" days. "DAMN THE MAN!"
(I hope you know the movie and meaning)
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