We are all here to help

1Cathi

We are all here to help

1Cathi

I normally  do not makes posts like this and I expect that perhaps this Will be deleted by the community or even worse I'll be shunned from BC.org, but if there is one thing that BC has tought me it is from time to time "stick up for yourself" " stick up for what you believe in" Help your friends.

BC.org has been a God send to me, it has helped me through some very dark days, I have made friends here that I will probably never meet yet  friends I never want to loose. 

In the few years I have been here I have seen a change in things - a sad change,  for some reason it seems that telling our stories, sharing our decision process on surgery,  recon, what ever our journey has been is "unacceptable"  PM 's are being sent berating people for sharing, nasty comments and remarks our left for the entire community to view on threads.  That is what I find to be unacceptable.

Shared stories and experiences is what has helped me the most.  Good outcome or bad,  BC is our life and knowing what others have under gone and their outcomes HELPS everyone. 

I have not read anyones journey that has ever said "do it my way", I have only read opinions, I have only read experience.

It seems there is feeling that  we should not "share" on the not DX forum  and several others,  those of use who have already traveled that path - should not share?????  I have never once read a post where a reply of love, warmth and compassion was not left, and even if "our story" is shared,   reassurance is in my opinion always given. 

I am so very confused as to what BC.org is becoming,  if it is not a forum to discuss our path through this beast  - if it is only now meant to be a place where a select few can post googled documentation then perhaps the discus son boards should be shut down.

To my dear dear friends  you know where you can find me  - if it's not here at BC.org.

barbe1958

Cathi, I agree wholeheartedly! You said it so well. I came to these boards expecting "discussions", not to get berated for sharing my journey. I think the PM option should be disabled as it is causing a bullying aspect that is hurting some members here.

I have received so much validation, encouragement, opinions and even cyber hugs when I needed it all the most. I feel closer to some of you than I do my own family. I thank all who have joined and made this journey less lonely.

Here is what the dictionary has to say about the word discussion:

-noun

an act or instance of discussing; consideration or examination by argument, comment, etc., esp. to explore solutions; informal debate.

None of that states that your way is the only way. Or that my way is wrong.

For those who can't handle the "grown up" experience of discussion, please stay off the boards.

For those who know me, you'll know where to find me....

Bugs

I'm clueless on what this is about, but I've found nothing BUT support on this forum.  I expect to hear other people's experiences and I take from them what I want/need to take from them. If I don't like what I hear, I ignore it or, *gasp* , step away from bco.

1Cathi

Bugs you have hit the nail on the head,  shared experiences is what it is all about, take what you will from a persons experience or leave it.  We who share our experiences are not forcing our decisions on anyone - just sharing.

That is what helped me from day one!!!!! Thats has what has inspired me to try and help others with my own experiences. 

barbe1958

The problem is with a very small minority of women who have nothing better to do than stalk people who have made different decisions than they did and want to ram their opinion down the other's throat....sigh. 

When someone posts a thread saying "what should I do" I'm sure they expect to hear the good and the bad. I have been blasted for reporting good, if you can believe it! I'm "not normal" and am obviously delusional. I just look at the IQ of the person crying out their lies and have a gentle laugh to myself at their expense. Some day they'll get a health issue that they'll really have to focus on instead of bothering innocent posters.  

It takes a lot of maturity to deal with cancer and sometimes we get dragged into the sandbox mentality of those who feed off other's hardships. So sad.... 

Beesie

Cathi, I couldn't agree with you more - shared experiences is what this is all about. There are things we'll learn from the women here that we'll never hear from our doctors. And explaining how we came to our decisions can be very helpful to someone making her decisions now - even if her choices are different. Every experience is helpful.

I was a bit surprised by your post, however, because I hadn't noticed any shift away from this being acceptable or desired. But then I tend to stick to only a few forums where my personal experience is relevant. And the truth is that in my 3 ½ years here I've always noticed that those who present less favorable personal stories and those who are less than enthusiastic about a treatment or procedure (Tamoxifen, radiation, mastectomies, as example) have never been well received. This is unfortunate but this isn't new.

My reminder that "We are all here to help" focuses on something different. While I gladly share my experiences if they are relevant, as you've probably noticed, I tend to focus more on "the facts". Many women come here wondering what treatments they'll have to go through. They ask about whether or not to have a particular procedure or take a particular drug. While perhaps the best answer to these questions is "talk to your doctor", in fact we do answer these questions. And sometimes, the answers are not medically accurate. Women who come here with calcifications are almost always told that they should have a biopsy. In fact, most of the time a biopsy isn't required once the calcs have been rechecked on a diagnostic mammo. I can't tell you how many times I've seen women advise others that "if you have a mastectomy, you can avoid radiation and chemo". Well, we know that's not true for chemo and only possibly true for radiation (depending on the diagnosis). Or someone with Stage II cancer who is considering Tamoxifen after a bilateral mastectomy might be told by someone who had a bilateral for DCIS that "My oncologist said that Tamoxifen isn't necessary after a bilateral". That's true for someone with DCIS but it's most certainly not true for someone who is Stage II. So, since I'm comfortable with stats and research, when these types of situations arise, I do the research and try to provide the most accurate medical info I can find, quoting research studies and medical reports (and I suggest that women talk to their doctors). Unfortunately sometimes I have to contradict something that someone else said; when this happens, I try to do this politely. I consider that women may be making life-altering decisions based on what they hear here; it would be terrible if someone decided on a treatment based on misinformation. But because of what I do, many times over the years I have been berated publicly ("this is a discussion board, no one cares about your stats") and insulted in PMs . I've seen the same thing happen to some of the other "research junkies" as well.

So yes, it's very important that we share our personal experiences. They are invaluable. But it's also important that we ensure that the medical information that we pass along is accurate; or at least, accept that others are willing to fill this role. Since women come here both for advice about their treatment decisions and help with how to get through this process, we need to remember that both of these elements of "discussion" are equally important to the success of this board.

Note:  Edited to correct typos.

barbe1958

Well said Beesie, "both of these discussions are equally important". I'm pretty sure someone wouldn't make a snap decision on the first post they read in their thread. It's not like someone said "Quick give me an answer before I drop you out the window" or something!

It was in fact by reading these boards before my own experience that made my decisions very cut and dried for me. I read for hours and hours. The horror stories, the statistics the alternative thread (boy do those poor ladies get hit hard with responses!), the Stage IV girls and all the ones in between.

I don't keep to just one site as I don't want to get blinders on to what is happening through the entire site. I have mourned the loss of 8 ladies I used to "talk" to on these threads since I joined. I have read of new babies and grandbabies and fur babies and kids getting deployed to Iraq. I've learned about new sex positions (!) and creams and jellies and what a foob feels like. I've stayed up in the middle of the night "talking" to someone in distress. I truly believe that to be an asset to this board you must read and drink in the experiences of everyone using them. It is a lot broader disease than just the knowledge of textbooks, pathology reports and the direction from a health professional!

It was all this put together that made my decision and past 6 months so easy to deal with and I am forever grateful to those who have validated my journey; and so very sad for those who don't think it's possible to live like I do and still be happy!

GramE

I have found most of the information here to be very helpful, although sometimes it is overwhelming.  When first dx, I read for hours on end and for my first onco visit, I had 4 pages of questions. It was reassuring to have others answer my questions and offer suggestions and support -- MOST OF ALL -- support and caring, genuine concern.   As in person, there were occasional negative comments and criticism.  However, as a reasonable (so I have been told) adult who has been around the block several times,  I was able to take what I needed and discard what I did not need.   

My decisions have been based on  a combination of medical consultations, survivor information, googled "research" and what I call "common sense".   I tried to go into each situation armed to the max.  This site and the wonderful ladies here have provided me with more than I could have ever imagined.  My fears were acknowledged, and I could feel the genuine concern and support of those who had gone this route before me.   

It is a shame that some have to bash, criticize and feel they have the right to dictate to others.  If I can offer one shred of hope, comfort, support, concern, or a suggestion for even one person, and taking into consideration my very weird sense of humor - a chuckle or laugh, then it had "made my day".    

I too am very grateful for this site.   None of us asked for this, none of us planned to be here, but here we are and we can lean on each other, lift each other up when needed, and hopefully moan and groan as needed without repercussions.  Thanks to everyone who had been here when I needed it.   Hugs and Blessings,   Nancy 

leaf

Hear, hear! what all of you have posted above.  I won't be able to say it any better.

I've been fortunate in not getting any 'nasty' posts. I have learned and gotten support from all of you.  Tolerance is so very important. 

leggo

Cathi, thank you for your post. The exclusivity and divisiveness of the boards has made it an unpleasant place to visit. I know many women who have left the mets board due to a few who feel they have an exclusive right to the forum.  The nastiness on this forum and the alternative forum made me come to realize that these are people whom I no longer wished to be associated with and I know many of the women who have left feel the same. It is very sad indeed. What is most concerning is that we have so very few venues for important information with this disease and try as we might, we can never leave completely; we just have to keep our mouths shut. Very unfortunate that important information won't be shared anymore by those who have left or have been bullied into not participating anymore.

lvtwoqlt

Cathi, thank you for voicing so many of our opinions so eloquently. I haven't gotten any 'nasty' posts but have gotten some questionable PM's because I was sharing my experience with somebody wanting opinions and they felt that I was encouraging somebody to have the same procedure done that I had done. She hadn't read my background and family history that helped me decide for the surgical procedure for me. I always try to say that each person is indiviual and needs to make their decisions based on their background/history and what they feel that they personally can live with. Because of that I have been trying to temper what I am saying so I don't come out so passionate in fight this disease with all that you have at your disposal.

I too have been avoiding some topics and forums that have seen their share of nastiness.

Sheila