RESPECTING the STAGE threads **RANT**

Bugs,

I have been following this thread for awhile. The title drew me in. I saw where you mentioned that a stage 4 lady might chime in,  so here I am. I am guilty of many of the things that have been mentioned on this rant. In general I am not a politically correct type of person. I type what I feel. As for the "death watch" ..I dont think of it as such. It is much like sitting with a friend who is dying except I cant sit with all the ladies from BCO so I join in on the "being there" as best I can. Many family members print those prayers and soothing words and save them for other family members to read so yes they serve a purpose. For those of us who participate in the "being there" it is comforting to us to share our feelings because we are hurting too. I dont condemn anyone for not participating just because I do. It is a personal choice. Yes I pray for a miracle first and then for peace and comfort. Miracles do happen, why not here? Kbug and Watson were my friends. They both have participated in our vigils for others so I am pretty sure they were not offended when we did it for them.  Kbug said she could feel the prayers and love from our posts. Their families had nothing but gratitude to all of us for the prayers and kindness. We loved them like family and they knew it. I dont know where the term "Death watch" originated on this forum but that is certainly a poor description of what it actually is.  I call it "Being there".  I hope that maybe this clears up some of the ill feelings some have when one of us is dying. What seems "ick" to some is "loving" to others. We are all different but it makes none of us bad or mean spirited. Its just how it is when you have thousands of women in one breast cancer site. It would be pretty boring if we all thought the same.

I agree that you shouldnt give advice unless you are sure of what you are saying. I know I have been guilty of that but hope I learned from it.

Okay that was my 2 cents. I wish you all well. Hugs, Mazy

I don't even know my stage, as, due to complications, I haven't been able to have surgery, yet.

I would never dream of offering medical advice, as I am not a doctor.

But to think that my good wishes would not only be ignored, but they would offend someone?

Why are my thoughts,fears, and good wishes not respected because I have not been at this as long?

Aren't those who have gone before us those we are here to learn from?

Barbe had it right with sand box mentality.  I feel like I'm in high school and at the wrong lunch table.  Sorry to any I've offended in my quest for knowledge about this disease we share, and I'll sign off 'til I know my place.

I'm going to apologize first....if I offend anyone I'm sorry!!!!  I can't believe how out of hand this has gotten.....it is unreal....no one has said that you can't post here or anywhere else.....just be respectful...thats all....be respectful....this name calling that is happening here and on another thread about this "rant" is uncalled for. 

 I am happy when someone is Dx with a early stage BC rather than a more advanced stage...and I'm sad that I wasn't so lucky...I still have trouble understanding how stage 0 is cancer....but that is my lack of knowledge and it is not for me to tell someone how to do their journey!!

I hate this damn disease for all that it has taken from me....being stage 3 is scary....and it just plain old s****.....but if you look at all the threads here at bco, there are some based on stage, others on type of bc, then others on Tx etc....so yes, some threads are mixed by age, stage, Dx, religion, gender, sexual orientation and so on.....and others are based  on stage.....So....the stage 3 thread is a place where those of us who are stage 3 can bitch and moan, whine and cry, cheer on and celebrate.....please everyone grow up....if you don't like a post, please just stop reading it....that is the beauty of bco over an inperson support group....you don't have to "listen" to something that you don't like or or you  find offensive...you just stop reading the post or thread and move on.... stage 3 girls are not trying to break away, we are not cliqueish nor do we have a sandbox mentality.....we are all just a bunch of sisters looking for comraderie (sp), friendship and understanding....Back to the topic of this rant that Deb so eloquently stated....look at the heading...the first word is RESPECT....please lets all be respectful...and I again want to say thank you to Deb for her always great way of putting things into words....   Karen

Do you know girls, the thoughts and sentiments-and reactions-are so similair to those we have experienced on stage 1V. So often we have had to ask for respect, and to be allowed a safe haven for our thoughts and fears, so I do empathise hugely with your frustrations.We too have been accused of being cliqueish-and perhaps we are, up to a point-but only because we really don't want anyone to be in our shoes. We are at the beginning of the end of our treatments, and this brings about a whole series of fear and events which nobody can possibly understand unless they are facing similair problems. If that classes us as cliquish, then it's only because we are desperately hoping that none of you ever need to find a place amongst us. 

I have to agree with Otter's excellent last post-of course it matters what stage we are! How naive it is to think otherwise-perhaps there is more than a little over dramatisation of the severity of an early diagnosis at times, which strikes me as sad.Not so long ago, we had someone post on the palliative board, asking about forgoing treatment-and this was before she was even diagnosed! Completely inappropriate, and unnecessarily cruel to those of us who will need to take this step at some point.

So yes, the segregation of stages can be useful-but more importantly, as so many have said-courtesy and respect are paramount. Sadly when struggling with the mental and physical traumas this disease brings our way, sometimes commonsense flies out the window.

Incidentally I'm another "active topics" user-but perhaps it really is time to remove this function, if it's causing more harm than good. Best wishes to one and all-whatever your stage. But please-if you're at a stage less than 1V, don't try to advise me. If you're at a stage less than 3, then you may not be able to help the stage 3 girls too much either.

Please, let's remember Riverinerabbit who just passed. She was DCIS Stage 0 when she first started. She ended up Stage IV. Stage 0 was made because DCIS wasn't considered a stage (until they realized how serious it was) and they had to put one in. Rather than push the other ones forward (stage V!) they put in the 0.

Not too bad to be a zero? Why do DCIS ladies have mastectomies, chemo and rads? Oh, and hormones and LE and all sorts of stuff that comes along with the whole package?

And who says my Papilliary Carcinoma wasn't invasive? You cannot imagine the flack I had from a couple ladies who didn't know what it was and therefore told me I didn't even have cancer! EVERYONE is learning on this road.

I have been coming here on and off since I was diagnosed in 2005.  I remember how hard that first year was, almost surreal and I came here everyday.  I was blessed with making many friends, all different stages and somehow the support of their friendship is what got me through.

I started out with extensive DCIS and IDC.  I thought I beat this thing and one year ago was diagnosed stage 4.  One day I realized I didn't belong anywhere.  My firends are all different stages, but I will tell you the support and kind words they have for me is so meaningful.  I thought about starting a thread on the stage 4 forum but then realized my friends would be hesitant to come talk to me there so I went to caringbridge and that is where I receive most of my support.

It took me along time to learn my elbow from a hot coal.  In the beginning someone would say something that offended me and I would counter attack.  It took me along time to realize that if I didn't like what someone was saying, just move on and ignore it.  We are all in a terrible situation because breast cancer has entered our lives.  Doesn't matter how early or how late, the fear is in our minds and sometimes tries to capture our souls and our hearts.

Just be gentle with your words.  We are all in this battle together and united we are strong.

My 2 cents worth:   We are all women, we all have BC and we cannot change it.   Some of us wear more "hats" than others:   we are also daughters - we all have Moms - some are with us and others have passed.   Some are wives, sisters, moms, moms in law, sis in law, cousins, neices, --- in other words, we are a mixture of many things.   

Not to get "religious", but I recall my favorite minister saying that no matter what we are or how we personally define ourselves, we are all alive and on this earth and IF - a big one - IF we can help another or "be there", maybe one day someone will "be there" for us and help us.    

"EVERYONE is learning on this road."  Another great way of summing up what we are going through.  Throughout this topic there are some great comments like this.

I agree with the original rant.  Being respectful.  It doesn't matter if you're stage x posting on stage y or if you are a fellow stage 3er posting back to another stage 3er's post.

In my mind "posting" and "advice" are not synonymous.  There are topics that aren't about asking for advice -- they are just though general daily life topics that all stages deal with.  I love diversity and on those topics I enjoy reading all the different perspectives.  Some I agree with.  Some I can't relate to. 

Then there are those topics where women are looking for help.  Often those topics are related to their stage.  If for no other reason, because of their mental state.  These are the topics that it is so important to pause and consider if your stage/experience is really appropriate.  As an example, if a women is talking about the fears and questions about follow up scans she receiving as a 1 or more year survivor then I don't feel I can add much.  Even those I'm also stage 3 I haven't been there emotionally or medically.

I've seen and experienced criticism from stage 3er to stage 3er.  At least I took it as criticism.  But I guess that's a point I would like to make.  I'm in treatment, I don't sleep well and I'm still trying to get used to the idea that my dx is the same dx that ending up taking my sister.  So please consider where I'm coming from before you take a stab at me because I do think very carefully before I post.  And it's a different emotional roller coaster for the women in the initial or later phases of this journey.

I don't criticize when I read something I don't agree with.  But if it's advice and it' medically incomplete or wrong then I will add my comments.  I want to help other women just like I've been helped.  But I try to be respectful.

hi ladies,

 i really beleive that from stage 0 to stage 3, we are very similar as we are all know as having early stage breast cancer that is treatable between 70 and 95% of us will survive five years after diganosis depending on type, stage, node envolvement and treatment, i could not beleive that even the cancer care team looks at us the same with a few modifications that being most of us get two or four xtra chemos and we get modified radical mascetomy's instead of lumpectomy's not always but in general.

i have met a stage one girl and we converse quite regularly on facebook, we are similar ages and have similar issues, she had a lumpectomy with 2 sentineal nodes removed, but we both seem to have very similar long term effects from our treatments and we also have similar issues and thoughts, i provide support for her as she does for me, we are both mid 30's, married with no children which hurts a lot emotionally. our dh's have reacted differently but neither in the manner we would have expected.

there is very little between us and stage 0, some of them have had radical mascetomy's, lymph node dissection, nueropathy, blood clots, pain in there scars, neck trouble, shoulder trouble, bleeding, bruising, hair loss from chemo, lack of self confidence, painful joints,back pain, depression, mild and severe and WE ALL RISK BEING STAGE FOUR ONE DAY AND HAVE AN INCREASED CHANCE OF AT LEAST TWOFOLD TO THE NORMAL POPULATION OF GETTING A NEW PRIMARY OR A LOCAL RECURRENCE OF THE SAME CANCER.

I do think it is very diffferent for stage iv breast cancer warriors as they are still in a real fight wheras we are all or will all be ned after treatments and operations for however long that lasts. As the breast care nurse said to me you can now say that you had breast cancer not that we have breast cancer.

Pardon me for differing! There is a difference between a rant and simply being mean and unkind because one has nowhere else (nor other tools) to vent. This is a public forum and the rules of etiquette are not always known, particularly by those with "chemo brain" or those new and just plain frightened and it is enuf just for them to get one word on the board. I can tell you that having read this thread and with only a partial idea of what is going on-because noone has explained the history of why everyone seems so upset, if I were new, I would be terrified to ask for help from ya'll. Again someone may have may a tremendous faux paus that i am not aware of (clearly it appears so). Any support group is not a "hot bed of sanity"-we are just human. Motto: speak your words sweetly, you may have to eat them. That includes me as I continue in my journey on this board. Perhaps in four years, (when I am not terrified of living with cancer every single day of my life)  I will have a different view, don't know. Having been in recovery for 21 years, tolerance of others is always the code. We never know what is holding other people together and it is important for me to help newcomers in leading by (I hope) the best example possible. Even when I choose to rant on the board. AND there are always PM's to rant too. I have to wonder about those who want to splatter their stuff all over the page "just because." I am new to the board compared to others and I know I breached many etiquettes-thank God for the women who tolerated me and gave me gentle guidance in PM messages, etc. Written with love and great respect to all of the women warriors on this site and everywhere who are struggling with this horrid disease. SV

What ever happened to Ignoring what you don't like when you read it, and just moving on to a subject that you like?

Every one is entitled to an opinion, if you don't like that opinion, deal with that person directly, or ignore it and move on.

Who Cares????

Hey All - 

Some may have noticed that I deleted my post above.  No one asked me to, no one sent me a PM. I just saw some of the comments, re-read my post, and decided to err on the side of caution.  My attempt at levity just isn't worth offending anyone in our sucky situation!

My intention when I originally posted was to join in on the rant.  God, I love a good rant, and people do/say the most stupid things (intentionally, unintentionally).  Sometimes I just get tired of being so damn nice.  Now, Deb, your rants are what legends are made of!  Well articulated, with just the right amount of humor.  I'm sure we can all relate to those feelings.  I know I do.  And, then, as the comments went on, it appeared that the tone and content was getting away from your original point, and was getting all huffy and territorial (not you, Deb, but other stuff, no need to rehash).  So I thought I'd tell my story to get people to laugh, maybe diffuse the tension that was building.  Not sure if I offended anyone.  Hope not, and if I did, I am truly sorry.

There is an old adage that adversity brings out the best in people.  I don't really think that is true.  I think if you are a good, caring person, it certainly can do that.  But I also believe that if you're a bitch, cancer is unlikely to turn you into a saint.  I think I walk a fine line between the two, and I'm not really sure which side is going to come out at any given moment!!

So this is my mea culpa, beautiful sisters!  I have come to rely on these boards for support, humor, guidance, and comaraderie.  I hope you have a wonderful Valentine's Day!

Laura 

Now I feel awful, I don't want anyone to feel like they were thrown under the bus. And Debbie, your story and sharing made me burst into tears! I am so very sorry for all of the pain you have been through. We all have tremendous storied under our BC that are profoundly heartbreaking. I came out of retirement as a hospice caregiver to care for my dying MOM as no one in the family trusted anyone else to do it. i chose to do it (partially as a full amends to my lovely Mother-opps crying again) but after a year of her being very ill and four months of her dying and the three week that we put her on hospice (i was her clinical caregiver throughout) she finally passed (not peacefully) with my Dad and me holding her-still crying). Mom and Dad were married for 60 years and she is the love of his life and mine. I did not have time to do anything because Dad had a stroke after she died and immediately after, I was diagnosed with BC. It is like, how bad can it be!!! We are tough and there is no need to feel like we are walking on eggshells or being stressed. If someone feels I have yelled at them, please PM me!!!!! I need to know and want to know how you feel and if there is anyway I can help or explain with love. Love you Debbie, SV

Saints never seem to have much fun, that's for sure!!  HAHAHA

Laura