Stage Less than 4 Woman...Here's YOUR place..

Thanks, y'all! I miss him a lot.

psst:  athena! edit that little tidbit out of the last line of your post....eeeeeeeeeeeeeek

For the record.

5 years ago I joined this site (give or take a few weeks).

I found so much support and compassion from the ladies here. I remember posting in tears about treatment, my fears, etc. We even exchanged xmas cards one year.

It was nice to be "DONE' with chemo and graduate to Rads. What a breeze that was.

I remember when the Stage III thread was started. For a specific reason. Many of us felt like we had one foot in the mets world. That we really didn't really belong in 'caught it early' that we were truly advanced. Did you know that Stage III is considered Advanced?

For a year I posted to newbies, sharing tips, experiences, etc...but then new names surfaced to take our places. So I pretty much hung out on the Stage III board. Now, during my 'tenure' here I have lost COUNTLESS friends. Ladies who were with me during chemo and rads...then they were gone. I took the first several very hard. Crying at my keyboard.

I did post on the IV thread. I knew so many of these women. NEVER did I ask what I can do to avoid mets, never did I take a  poll or ask questions that might offend. I shared fears about children and end of life issues. I found it completely disgraceful attacking someone with a terminal illness.

Sure, I asked a few questions about certian pains (i.e. did your mets present this way), but they were PMs only to ladies I KNEW well. Not strangers.

In the mean time I lived my life and posted support here. I checked in almost every day.

I raised monies for BS.org. I had a fund raiser and raised over $1K. I give everytime we lose a sister. I have donated monies to those who were in need. I have volunteered for the american Cancer society Reach for Recovery, and ran a RFL team that raised over $6K. I was trying to MAKE a difference.

I had to meet with my Oncologist every 3-4 months  because of my status, countless scans and blood tests. 

Then my day came. Mets.

Guess what? the chances of me living to see my boys graduate from highschool are pretty much NILL> (they were 4 when I was first dx). As a stage IIIer I had hope I could be there. That hope is just a spec.

I will never be 'done' with chemo. I had my hip replaced because cancer ate it up. No boob, scars from a mast, a hip replacement...Do you have those? I am not the young thirty something I was when this crap began. The chances are that I will never live to see a grand child. My life will be 1/2 of what most of the "STAGE LESS THAN 4" women will get.

Have I EVER told a sole they are not welcomed? NEVER.

I made 2 posts in the past week that were less than 'blowing sunshine' and the back lash was unreal.

We know that all cancer survivors have fear. Guess what? we were there...Your fear is that the cancer coming back. Mine is a painful death and  my boys growing up with out a mother.

So if you feel the need to vent because your Stage IV sisters are not as tolerant, well than so be it. I am sorry you have had it with us. I have had it with life and cancer.

respectively,

Janis

This post is directed to the Diane of Oscar.  I thought he was a smooth Saint Bernard and I immediately like you because I own and have had Newfoundlands for 33 years.  i presently have 4 and they are my kids.  I am sorry your Oscar has passed.  As a side note, my favorite Girl, Nova, developed breast cancer, had a mastectomy on one side and lived another year.  That was about 8 years ago.  she was one brave girl.  I remember before she died, she wouldn't eat so I put her on a raw diet to see if that helped.  She managed to eat 30 chicken necks (the others didn't stand a chance...she was rapid and stole all of them from everyone else before they even knew it) and I went outside the next day and it looked like a plane had exploded overhead and dumped a crate of chicken bones stuck in doggie doo all over my backyard.  She was something else.

wow, I had no idea even dogs get bc!!

Athena--didn't mean to be cryptic or worry you, but I see you figured it out. I'd hate for someone to see personal info here!

There is an older couple that often bring their great dane to the cancer center when I am there. She is gorgeous! I took a picture of her one day with my phone and emailed it to my son.  He asked if she came with a saddle! LOL!! I would love to get another dog, but it's not a very realistic hope. I'm in a houseful of men and the care and training of pets has been my department in the past. I think I got up just as often during the night with a new puppy as I did with new babies! My husband an sons are not up to the task of training and I am physically unable to now. (in a wheelchair because of neuropathy and stuck in my room most days because we have too many stairs in this house).  I still have my kitty thought (she's not the one in the picture). It's sort of weird...since Oscar passed, Kiki (kitty) seems to have been "possessed" by his doggie spirit! She has picked up strange habits and mannerisms that Oscar used to have!

((((HUGS)))
Diane

Several years ago, the cat rescue group I belong to took in a kitty that had had breast cancer. The gentleman who found her (she was a stray at a shopping center) spent $5,000 on her surgery (mastectomy) and treatments. I don't know why he couldn't keep her, but he certainly was a good Samaritan. This kitty eventually was adopted by a breast cancer survivor. All's well with both, as far as I know.

I sorta "know" a lot of the ladies who are suffering with Stage IV by name.  They are sometimes a little intimidating - I've often wanted to express my sympathy for particular women who are going through the mill but didn't really feel free to because it's their territory. 

It's a good thing to learn what's offensive to people with advanced cancer - lots of things that are intended as kindness are very offensive to people with cancer.  I've learned a lot from some of these womens' comments, and I understand because I recall just HATING it when I was first diagnosed because people treated me like I had one foot in the grave while I was trying to get on with my life.  I mean, who needs someone you hardly know saying, "Are you okay?" with a look on their face like you're in a morgue or something?

Stage IV ladies are completely entitled to their privacy and I  completely understand where they are coming from. 

Someone on the Stage IV thread we are talking about said they found it offensive when women come on the boards to express their fears that they have cancer at all and also when they rejoice at their NED diagnosis.  I do have to say I completely disagree with the notion that people posting about being worried because they are having a scare, then post that their test came out NED are offensive.  I remember when I was going through testing and I was terrified - I really could have used this site.  I spend most of my time here trying to help women who are going through the diagnostic process or are newly diagnosed.  They're entitled to their fear and the comfort they seek just like anyone else.

Just wanted to tell kona that I am praying for you and am SO sorry to hear you're so ill!

Janis, big hugs to you, dear lady.   

I'm so happy that we're all unruffling our feathers.  I KNEW we would!  We always do.  And I'm especially happy to see Brookside (a.k.a. Becky the Perp!) posting!  I hope no one leaves because of one or two people when there are so many more people that love your company here.  And thank-you Desdemona -- I appreciate your kind thoughts.  :-)  Big sappy affectionate hugs for everyone.

Elizabeth

xox

I have to admit I was stunned by some of the vicious comments on the board, but I figured I was just being oversensitive. Thinking back to when my ex-father in law was dying of throat cancer, he got pretty testy- understandably- and it always really affected me although I knew he was in pain and aware there was no hope. So that helps me understand what has taken place on the forum over the last couple of days.

To give another perspective as to why a non-stage 4 person would want to read, and possibly post on that forum:  I need to understand. My mother and an aunt died of breast cancer, other relatives have been stricken, as well as a friend being treated for aggressive breast cancer; I have not been diagnosed, but am very much aware of my risks. I wish I had had this forum years ago to fully appreciate what my mom was going through and her fears, to be able to ask the right questions of the doctors, to comprehend why she told nobody for years and refused treatment until it was far, far too late. I don't feel the "Friends and Family" forum really answers those questions. Reading here has opened my heart to the suffering you all have experienced, and that can't be a bad thing. 

I'm also grateful that the forum has opened my eyes and helped me come to terms with the reality of this disease. Thanks to the sharing of experiences here and the abundance of information, I won't be completely blindsided should  I get some bad news. Knowing what treatment options are out there is invaluable, not from the mouths of doctors but from those of you who have gone through the process. Thank you.

Thank goodness I never posted on the Stage IV forum, I would have been torn to shreds. I've never seen any indication that it was off-limits to others, maybe things could be more clear? My sympathies to Brookside for having inadvertantly trespassed some unwritten law! I hate feeling like having to walk on eggshells, so this may be my one and only post. Just wanted to offer another perspective to the argument...

I've been thinking a lot lately about what's been going on within our forum.  I've been on these boards for about three years, and unfortunately I can say that I've indeed offended other women (unintentionally) during that time.  I'm not a bad person at all, and I'd never dream of hurting someone else with my words, especially other women who are battling cancer.  The reality of this forum is that sometimes you can write something with the best of intentions, and then it comes off as insensitive or not the way you intend it, or you just don't think about how it might be received.  That's such a hard thing to overcome when we all have so many emotions at play.  The other thing that's difficult to overcome is the reality that we're all scared, from Stage Zero to Stage IV.  But, one of the the realities for the women (and men) who are Stage IV is this:  many are diagnosed Stage IV from the get-go and NEVER experience NED; many others are coping with the reality that they will always be on some kind of treatment (that will hopefully work for a long time).  I think that any early stage person who is scared about recurrence and needs to ask questions just has to be fully aware of that reality, and be sensitive to it.  What are the answers to our dilemma?  I don't know.  Right now, I'm just so thankful to be here, to not be in treatment, and to be surrounded by strong, positive women that lift me up when I need it.  

Badboob- great post -

Linda

I always feel bad whenever there's a hoopla in the stage iv section over silly stuff.  I remember the first time I lurked in the stage IV section and I was so IMPRESSED by the utmost compassion I saw streaming from the words written there. 

I know that I have wondered how my own background stacks up compared to those with stage iv.  In all honesty, who hasn't wondered just that?  May I take this opportunity to remind people of the 'roll call' thread in the stage iv section where people have shared their answers for this very question. 

Now we have the 'not diagnosed but concerned about mets' area, which the mods created many months ago.  I haven't visited brookside's 'blunder thread', but jeepers, why would it be inappropriate for her to be steered there?  If anyone's a stage iv in a generous mood to share information, by golly, she could go to that section and see who's asking what.  

badboob, I'm so glad to see you posting again.  I was concerned about you when I saw you hadn't posted since early summer.  

London-Virginia,

I agree with much of what you said about the need for clarity or a re-design! When I first visited here in Sept 2005, there were not nearly so many sections. I did not have much difficulty locating the information I needed.

Over the years, different groups of people have requested sections; many I think were good ideas and needed. (e.g. lesbians with bc, african american women with bc, young women with bc). Somehow, the powers that be decided that we need to continue to divde and subdivide the boards. Granted, being able to look up one's dx/pathology for the appropriate are is helpful, I think so many divisions is confusing to newbies (and even some "oldbies") and contributes to a sense of division and "us" vs "them". I personally feel like the main forums should remain looser and more broadly divided and that "private" groups should be allowed for those who wish to commiserate with other like-dx'ed or -minded individuals. 

I also believe the mods dropped the ball in describing the purpose of the "worried about mets' section. The wording makes it sound like a place to go and just worry with others rather than a place to get answers from someone who's been there/done that.

Something that was suggested back in the spring that I still think is a good idea is for a "pop up" or "confirmation" window to appear in the posting process in sensitive sections of the boards. It would go a long way in preventing conflict if one had to read a notice (and even check a "I have read the notice" box) before their post goes public in the stage IV general board, palliative section, etc.  Sure, it would be a nuisance to those of us that are used to things here, but maybe there could even be a way to have the notification disappear after so many views by the same person or something.  I betcha that any of the people who have innocently and inadvertantly made posts that started such controversies would have re-considered or re-directed their posts if they had to click through a confirmation that read something like, "You are about to post to the stage IV support section of the boards. This area is mainly intented for the exhange of information and support between stage IV patients and their caretakers. If you are neither stage IV nor a caretaker, please consider whether your post would be more suited to other sections of the board that are available to you.  If you have a question about risk or symptoms of stage IV, try the "not diagnosed with recurrence or mets but worried" section.....blah blah blah etc etc etc"

In the past, I would gladly have taken the lead with a campaign to the mods to make some adjustments, but I have lost a bit of enthusiasm after several issues that never have been fully resolved. If anyone thinks my "confirmation message" suggestion hase merit, feel free to take it to the mods and/or see if others agree. I would much rather prevent such situations like we've had lately than to try and pick up the pieces afterwards! I do have a forgiving heart, but scars are always left when hurtful words are exchanged.

Hope everyone is having a good day! I love autumn and the cool weather....the smell of fireplace smoke floating through the air...ahhhhhhhh  My favorite time of year.

((((HUGS)))
Diane

Badboob67: I wholeheartedly agree that a pop up window with the message you suggested is a wonderful idea. I think most people here would have a better understanding and sensitivity towards the Stage IV ladies.  I have never posted on Stage IV but I did PM a member once about a concern. When I first wrote the note to her I didn't quite understand the gravity of it all.....I realized right after I hit the submit button that I never should have done it. I can't tell you how heartsick I was after my thoughtless intrusion. I still feel so terrible about it. I immediately sent an apology before she even had a chance to respond. I felt just awful about it. The woman was so kind and gracious in her reply but if a fairygodmother could ever grant me a "do over" that would be it. I never would have sent that note if I had been more aware. I didn't intend to be insensitive...I guess I was just caught up in my own moment of drama and truly didn't use any common sense at all. Shame on me.

A pop up window would have certainly made me pause and think about it before being so foolish.

Thank you for wanting to be part of the solution. 

(((((Fitztwins))))))    Your response was very clear, to the point and as direct as can be and I so very much respect you for being direct and not mincing words.  You left no room for missinterpretation - not sure I spelled that word right but it is too a word! 

There are times that my emotions are running so high that I don't think before I speak - those are times I should not post because I am apt to hurt someone's feelings unintentionally and over the years of many blunders (on a stepmother support group board) I have learned to not post when I can't think clearly because at that point in time I sure as heck can't express myself in a clear and concise manner.

Before I got cancer I was one of these stupid people that would tell other cancer patients "think positive" - if only I could take those words back.  I never realized them how ignorant I sounded and actually I was so ignorant and stupid.    I have learned a lot since I was diagnosed.  However, I have learned so much from the Stage 4 women on this board.  I have learned about dignity, integrity, total honesty, humbleness, etc.  I have learned what "not to say" to someone that has cancer no matter what stage they are in.  I can't imagine how you must feel every single day but know that I do think of you and your friends a lot.  

I don't know if I can express this correctly but bear with me because my intentions are honorable.  When I started this journey I whined constantly about the SE's of chemo, etc.  I whined about my life totally changing.  Then I started reading the stage 4 forum because I have a friend who has many friends in that forum and she lived here in SLC and recently moved.  I am not dying.  I have no reason to whine.  I have no valid reason to have pity parties.  You are living life from day to day - you have every reason in the world to have a bad day, to come across negative (not that you do, this is JUST an example), you can get snarky all you want and I will never be offended or think negatively about you.  What people don't realize so often that unless you walk in the very same pair of shoes - you just flat out don't fully understand.  That I get 100%  I don't fully understand.

My own husband as supportive as a husband can be, a total jewel, the love of my life, he just now understands that he will never really get what it is like to have cancer (no matter what stage) because he hasn't gone through that experience himself.  It took me giving him an example of "what if your son died and someone said to you "Oh, I totally understand how you feel" yet, they hadn't had their own child die.  You would more than likely take offense to that type of comment.  Sure, they feel for you, they are sad for you but they really don't know what it is like to lose a child anymore than you can fully realize and understand what it is like to have cancer"

Likewise, those that are not Stage 4 can't fully understand, comprehend, experience what you deal with on a day to day basis.

I guess what I am trying to say is that I totally support you and I hope that I never say anything to offend you or any of the Stage 4 ladies on this board.  I have been known to put my foot in my mouth so I don't post on the Stage 4 forum as I never want to say something stupid that comes across as offensive.  And I really hope that I didn't say anything in this post that came across wrong because I have nothing but good intentions towards everyone.

For those ladies that say this is their last post - I am sorry that you are leaving because this board has been so valuable to me emotionally.

(((((((((((((((((((((((((((((((DawnBell)))))))))))))))))))))))))))))))))

Pm me sometime sister!

Fitz.. hands down.. you ROCK!

Jancie... nice............................