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Dear Sisters,

MAbound
Posts: 1101
Joined: Jun 2016

In an earlier thread, Diane the Fighter, asked for some imput as to whether or not she should have radiation as part of her treatment. It's a struggle that evokes a sense of deja vu in many of us as well as empathy for her needing to make a decision regarding something that she is not an expert in.

As is often the case in this format that we interact in, the posts strayed off topic to a different issue. It's a serious one that really doesn't belong in that thread and so I am creating this one because of a PM I received from Denise last night. This may feel like a betrayal of trust by Denise, but I am responding to it openly here because I think many carry suspicions that there are cliques within this group that talk amoungst themselves in secret. I don't want to contribute to that and I think there is a definite value in discussing this openly.

This is the PM I received:

"MAbound,

I feel like I owe you an apology as after I reread my response to you I realized that I should have directed my post to Taking Control. (I hope you are not an ally) I became angry again when I reread Taking Control's 2nd post. The whole conversation was upsetting to me. So I am sorry if I offended you, I didn't mean to. 

xxoo

Denise "

This is my response that I am sharing with all of you:

Hello Denise,

Ok. I suspected that was the case when I kept trying to figure out where your rant and accusation were coming from. I also suspect that shame is a topic that you are particularly sensitive to because you've been a victim of it and are projecting it onto someone else because of lingering hurt. That is the explanation that I'm choosing to go with. Your pointing it out has value because we all do need to be mindful of how our words may be taken, but it also made you guilting of shaming TC. Two wrongs don't make a right, as the saying goes.

TC has been sharing her experiences and what she has learned with us for a long time and her perspective has been helpful to some and contributed to the knowledge base here. She chimes in because she wants to help. We are all unique in our circumstances and choose for ourselves which advice to take to heart or ignore, but we appreciate the spirit in which it is offered even if we reject it applying to our particular circumstances.

Sharing our experiences and advice with each other in print is hard and recognizing that, we need to walk away, rather than react, when we encounter something that strikes us in the wrong way. Without the usual cues of facial expressions, body language, and tone of voice that we rely on in face-to-face conversations, it is impossible to correctly judge others intentions from what they write. Here, within this group, we have to assume motivations are positive and that perhaps someone just had trouble with their wording or timing. It's ok to disagree with someone and make your point in a manner that adds to the discussion, but it crosses a line when it devolves into tearing someone else down. Let's not go there anymore. I still think that you need to let go of your mistaken indignation and also apologize to TC. Her story is a long one and hard to condense, yet she gives it her best shot. I think it will make you feel better if you can look at what she wrote from a different view point than your initial one. Anger is such a dark place to be and I hope that you can free yourself from it.

The point of the this group is support of each other because no one "gets" us like we do each other. We don't have allies, we have each other. This group loses it value when we lose sight of that and separate ourselves into tribes. Our strength comes from our varied experiences and perspectives and no one should ever think that their input doesn't have value. It hardly ever helps everyone, but it often helps someone.

Hang in there, Denise, we all can't help but to step on each others toes from time to time, especially the longer you remain here and keep trying to contribute. We are a mix of many different gifts and personalities and none of us can always express ourselves as we mean to. You are going to need understanding for your missteps as much as you are going to need to extend that same understanding when others say something that riles you. 

 

 

oldbeauty
Posts: 297
Joined: May 2012

Thanks for your thoughtful post, MABound.  I hate to think any of our dear ladies finding anything but love, comfort and useful information here.  I reread the subject thread.  Personally, everything was edifying to me.  I agree that no one should feel some personal failure on their part caused their cancer.  Even if that were true, it's not helpful at the point of frontline treatment because "it is what it is" at that point.  I have no idea why I got cancer; there's none in either side of my family that was not related to tobacco, and even then there are just 2 family members I know of amongst plenty of smokers.  As for myself, the only risk factor I can credit would be chronic stress, beginning at a very early age and continuing until my work life ended.  There is no proof that stress causes cancer, but stress hormones are said to be credible culprits.  I wish I'd had a happy nurturing childhood and a career where I was fostered by a trusty mentor.  But that didn't happen.  Sure, I could have sought therapy decades ago but feelings of inadequacy, shame, etc. stood in the way.  Do I deserve to have cancer as punishment for being an imperfect person?  Of course not!  

That said, it is useful, at least to me, to know what the risk factors are so that, after the fact, I can consider what I want to do to improve my chances of survival.  Hence I value the information about Metformin and reminders about healthy eating and making an effort to be more active.  And, I appreciate articles like the one Denise posted recently which I found to be an informative survey of current knowledge, especially about the potential to find out really useful information from genomic testing of one's tumor tissue.  Personally, I disregard the prognosis stats because I have taken to heart the "statistic of one" line that I don't even recall who started.  But all these posts, I think, can make us more effective advocates for the best treatment tailored to our needs and wants. 

Anyway, I would second MABound's plea that we endeavor always to be respectful, loving, supportive and generous in our sharing of information.  I have learned so much here and received such comfort whether in response to my own experiences or vicariously through identifying with others.  So, I dearly hope everyone feels welcome and empowered here.  I would hope that there are site moderators who reach out in PM's to tell a poster when they've violated any "rule of engagement."  I would encourage anyone who has felt they were not received well to PM the source of their discomfort and not stew over what may well simply be a misunderstanding or way of stating something that might be more usefully communicated differently.  

We're all on the same side here.  Best wishes to all.  Oldbeauty

Molly110
Posts: 184
Joined: Oct 2019

I don't know if it's useful to add anything to the discussion at this point, but I didn't read Denise's initial post in response to Taking Control in the same light you did, and I was startled to see you refer to it as an "accusation," which I thought was very strong language -- so strong that it felt unfair.

There are several posters here whose advice and perspective I find especially helpful, and you and Denise are two of them. If I recall correctly, you're the person who recommended the eggshell membrane supplement that I now use, and Denise is the only poster who has ever seemed to really understand what my hair loss has meant to me. I don't have the words to express how much that meant to me, how validated her understanding made me feel.

While I find Taking Control's posts to be interesting and full of helpful information, I also sometimes find them overwhelming, and the post in question was one of those for me. It's not my intent to put words in anyone's mouth, but I read the post as saying that chemo and radiation won't do any good unless one also does a massive amount of research and gets a lot of tests and takes a lot of supplements. To me, it all sounded expensive and time consuming, and some of it ran counter to what my care team tells me. The orginal poster was newly diagnosed and terrified, and I remember feeling like that as if it were yesterday rather than 15 months ago. I wouldn't have been able to cope with the kind of information in TC's post at that point in my own journey. I'm not suggesting that there was anything wrong with the post, just that not everyone responds to every post in the same way. 

Frankly,  although anger may be, as you say, a "dark place," anger is an honest emotion, and I'd be plenty angry if it were me being taken to task and lectured. I look at this group as being "owned" by the women who sustain it and have been posting here and supporting one another for years. I'm a relative newbie, and I come here to support newly diagnosed, terrified women who don't think they can face chemo. That was me a short while ago. My hope, though, is that I will be one of those women who have the luxury of drifting away because they don't recur. Since I don't view myself as an "owner," perhaps I shouldn't be chiming in. It just felt so unfair to me for Denise to be called out and shamed in this way, no matter the sisterhood language used in the rebuke.

One of the things I decided to do when I was diagnosed was to avoid unnecessary stress and toxicity, so I'm going to take a break from the board until after the holidays. I hope everyone has a safe and happy Christmas.

Molly

LisaPizza's picture
LisaPizza
Posts: 336
Joined: Feb 2018

All I can say is I'm horrified to see someone's private message posted publicly. Horrified. Here, on this board, really? 

Kathy G.'s picture
Kathy G.
Posts: 221
Joined: Dec 2012

Ladies...as I say here almost every time I post...I do not post that often, but I do visit frequently. 

I was one of the lucky ones who was diagnosed early. Surgery was my only form of treatment.  However, I will never forget how extremely vulnerable I felt early on. Plus, I was totally clueless about stages, grades, treatments, etc.. I came here, and received  tons of support which I needed from others who had the same disease. I also became very educated should I ever recur.

All that being said I have been on this board 8 years and have never seen any conflict so common on other social platforms. So it hurts me to observe this. It concerns me for new members who come here seeking hope and compassion while at one of their lowest points in life and scared they will die!

While I believe it is healthy to 'agree to disagree' when we are a bundle of nerves we arent always able to reason or not take things personally. 

When posts like the ones in question seem to have a certain tone most of us can move on, but the vulnerable may not be able to.

I think its important  we bear that in mind when posting...how what we say affects others...particularly  bc as pointed out...there are no facial expressions, tones of voice or other nuances to convey what we are saying.

I really wish the topics/posts regarding this issue could be taken down as I FEEL they do not reflect the spirit of this board, and will mislead or turn off newcomers. But what is done is done. I pray instead we can move on and just be more attuned to how others...especially  newcomers...may perceive our posts.

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

Sometimes it is so hard to know what to respond to and what not to. I've been here now for over five years and obviously, the ladies who still post are alive so whatever we've done - treatment-wise, has worked for us. I don't think it's a matter of right or wrong, it just is the way it is.

Many times I hesitate to post to a new person because my experiences with cancer and its treatment have been so different than most. I don't want to scare new people into getting treatment but if somebody asks about a specific side effect ie. rash, neuropathy, diarrhea, I respond to tell them what has helped ME. 

I think we have to be very careful to end any advice we give with a disclaimer. "This is what I did, but please, consult with your healthcare professional. What worked for me, may not work for you." And then we have to respect their decision even though we may not agree.

Love,

Eldri

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

Duplicate

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

I have been here for 5.5 years and have found this board to be a lifesaver. The support, giving and love is strong and very much needed. That being said, it is not a good fit for everyone. Over the years, we have had a few ladies that did not get what they needed and hopefully found other places to go. I hope we never lose the input that our longterm survivors give so willingly. It was valuable when I needed it at the beginning and continues to help me even today.

I'm sorry that Diane was hurt by the input. I hope that she can appreciate the information down the road. (Once she gets past all of the initial things that she has to face right now.) I went back to reread the thread again this morning and it has been deleted. And, she is no longer coming up as a member.

Please make sure to call me out on anything I post that bothers you. I would rather have an opportunity to correct or at least explain my input than have someone upset with something I said. I'm not known as always having a soft touch.

Take care everyone.

Love and Hugs,

Cindi

MAbound
Posts: 1101
Joined: Jun 2016

Thank you for your thoughtful replies.

Be assured that I have been chewing on them and doing a lot of self-reflecting. I have come to the conclusion that I'm part of the problem with the conflict on this board. Some people have a gift for finding the right words to say in the right way at the right time and I'm more of a bull-in-the-china-shop, especially when I feel strongly about a topic. I try to explain myself as best I can and present my evidence or reasons, but just don't have that touch others have for not riling those who are easily offended. Those kind of personalities just don't mix well with mine.

My whole intent of staying here as long as I have has been a desire to pay forward what I've received here. I have to recognize now that I'm pretty hit-or-miss in my abilities to do that and need to let it go. I've really wanted to be one to have that gift to give the right advice, but I think the best gift that I can give to everyone is to be one of those who moves on to the rest of my life. I'm sorry for the upset I've caused with this incident, but perhaps you can see the benefit that has happened in discussing this openly. I'm not the only source of conflict on this board, but I hope this gives you peace to move forward. You will always be dear to me and I wish you all well. 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

I sure hope you reconsider leaving MAbound. You will be missed. 

Love and Hugs,

Cindi

ChessieMae's picture
ChessieMae
Posts: 7
Joined: Feb 2020

MAbound you have given lots of great information and have been supportive of all on this board.  i see nothing in what has been put out on this board except talking of a disease that has affected us all.

if you can't have an honest and frank discussion on here, then where?  The new world way to think is not to my liking, this is why I am not active here.  I have not found you to be offensive in any way, you have my good wishes an I understand your moving on with life.  Wishing only good things for you in the future.

jan9wils's picture
jan9wils
Posts: 150
Joined: Mar 2017

MA Bound, you have been a wealth of great information for me, as well as so many on this board.  If not for your suggestion, I would not have asked for genetic testing of my tumor. As you said, this forum isn't as good as a face to face where we can hear inflections, see body language, etc. But it is the best we have. I am grateful for this resource and for the encouragement and support I feel from the members.

Jan

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

While I understand that you want to take a break from the site now, I encourage you to leave the door open in the future. Your experience with a later stage of the most common form of uterine cancer is always welcome and your advice about treatments and supplements very helpful to those struggling with their diagnosis.

I know that I sometimes struggle to respond to a post because I don't always come up with the right words to express how I'm feeling. Some of the members here are clearly more gifted than I am at conveying their thoughts. But none of us can always be perfect in our responses, especially in this imperfect form of communication.

Enjoy the holidays with your husband and the rest of your family as best as you can, despite the limitations that Covid has placed on all of us.

CSN_Bill's picture
CSN_Bill
Posts: 26
Joined: Sep 2016

Hi everyone, 

The CSN Support Team has decided to close this thread to further comments. May we all remember to strive to maintain a kind and supportive environment, no matter the different experiences or opinions of others. 

Regards,

Bill
CSN Support Team

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