Cancer Envy?

vbishop

Sam2U - I wish there was a like button!!

 

PattyPeppermint

looks like a beach party is coming together. Yes 

MsPharoah

Hello ladies!

My onc told me that my risk of distant recurrence was either 0% or 100%.  I am much more concerned that my medical team NOT marginalize me as a person with "old lady, slow growing" cancer than the ladies on this thread.   I think that is so much more important and worth getting loud over...grounds for changing docs!  If I have ever been marginalized as someone who doesn't "count" because I have S1 cancer, I didn't recognize it as a dig....actually I have come to believe that breast cancer patients make the best friends ever!!!

I am a stage 1 old lady.  I have had a lumpectomy, chemo and radiation and anti-hormonals.  I don't feel the least bit guilty that I am stage 1, that I didn't have to have drains with my surgery and recovered quickly, that I had a relatively easy go with chemo and sailed through radiation...that I have figured out how to deal with the AI side effects. (all by the way with the support of the kind women on these boards..all stages).  What I know I share with people of all stages of cancer is the profound loss of well being and waking up every day knowing that I have a life altering disease. 

 Love, MsP

Lily55

I WAS stage 3 and will only admit to genuine DCIS envy, anything beyond DCIS for me is full cancer, but I do not dismiss the impact of DCIS, just the little C word is enough.............

Although i was stage 3 I don´t think any of us diagnosed with cancer get away lightly, its all about how we live our lives now and I freely admit i am struggling........

I don´t know if this helps anyone but I hope so, we are all in this rocky boat together, sadly

Moonflwr912

I'll join you all in that happy place. A beach sounds good. Mine will have to be Lake Michigan as it's close enough. And it will have to be in summer as now it's a wee bit cold! LOL

NancyHB

Wow, what a thread!  Each and every post is just like each and every one of us - all different and unique in our experiences, and our interpretations of the world.

When I was first diagnosed I started a blog to share my experience with friends and family; I didn't want to have to tell the same story over and over every day to every person I met (y'all know what I mean).  Early in my diagnosis - when I was still struggling with hearing, let
alone saying, the word "cancer" in conjunction with the words, "I
have..." a friend pointed out to me that I was a snob.

"You're a cancer snob," is what she actually said to me. "All you do is talk about your cancer, like your cancer is better than
someone else's cancer. Or like cancer makes you special. You're a snob
about having cancer."

At the time it was horrifying (and no, we are no longer friends; she unfriended me via FB because my cancer was too much for her to deal with).  Now I can laugh about it a little bit, because I realize all of this was about her, not me.  I feel the same way about the comments I hear from others - and being Stage 1 means I hear lots of those comments.  A lot of that comes from pinkwashing - the general public believes catching it "early" means guaranteed survival (and once you're done with chemo you're cured, and radiation isn't really "treatment" per se, it's just like getting a tan...)  And some of it is true - sometimes.  I mean, I'm Stage 1, but with my Oncotype and receptor status, I've been told I'm still at a 25% recurrence rate; my friend with a higher stage cancer will actually have a lower recurrence rate after chemo and rads and AIs.  

So, we're all here for the same (damned) reason - and none of us are snobbier than the other.  It sometimes hurts when people say and think unkind things; maybe we need to look in ourselves and determine why that bothers us so much.  Is it a little like survivor's guilt?  We've all got cancer; there are no guarantees.  Some of us Stage 1 sisters may outlive others; some of us will progress to Stage IV, and then...what?  

Better we spend our energy supporting and loving ourselves, and each other, while we can.

Lily55

pink washibg drives me nuts, so do people who say wow after recon my friend had such lovely pert breasts.....well guess what its ONLY women who get immediate recon who end up with breasts that look like the real thing, the rest of us have huge scars, normally three for a flap surgery........yeah it was a really good trade saggy breasts that were real with feeling for plonked on tissue with no sensation, no Im not doing flap surgeries...but,, get my drift?

keepthefaith

vbishop, thanks for the thread. Interesting to read. Sorry to hear of your experience with the support group. We are neighbors! Check out the "Hill country warriors" thread,  if you are inclined.

Don't mean to sound "preachy",  but I am of the belief that we need to try to forgive when we can. Sometimes it takes a while. Forgiving is for us, not for those who may have offended us. Much easier said than done, I know. Most of the time the offenders aren't even aware that we have been offended.  Like many of you have said, we all have our own battles and, like most of you, this has been the worst thing that has ever happened to me. I am thankful that my BC was caught at Stage I, but I also know that I may face it again. I hope that all of us can continue to support one another no matter where we are in the fight. Your experiences, hints and stories are priceless, especially to those who are newly DX'd and going through TX. This forum has truly been a lifeline for me. I can't say that I have had anyone give me a guilt trip about my DX, although I have heard some pretty annoying remarks, mostly from well-meaning people (who probably don't know any better). My most memorable one was from a very dear friend who said, "All will be well", when I first told her about my BC DX! I wanted to say,  "how in the blankety blank do you know "all will be well"? do you have a crystal ball? ...I am scared out of my wits right now!"

I hope you all can enjoy the rest of the week!

Anonymous

It's good to see how this board is serving its purpose, which is to get our feelings out. It's a safe haven to say what's on our minds - good or bad. I have not
met one mean or uncaring person here, and have been helped by
women of all stages. If we all had the same opinion, life would get pretty boring.

As women, we should all support each other. This disease is awful for all of us. We are in pain, we are scared, are having to deal with bodies we don't recognize, and bodies that don't function the way they used to. It's way more than any of us should have to go through and it is bound to make us cranky and impatient.  But as Lily stated, we are all in the same boat - the difference is that some of us may have a few more life preservers at our disposal, when others don't have any. Cherish every day we have together.

exbrnxgrl

Please send more life preservers to northern CA

Anonymous

{{{{{{{{{{exbrnxgrl}}}}}}}}}

Pig latin: uckfay ancercay!!

kayfh

Just before Christmas my DH asked me to telephone the wife of a colleague of his.  She had had a biopsy that indicated breast cancer.  They were both understandably freaked.  I did not know her, but I am a fairly gregarious person who also has a healthcare background.  Just being able to talk with her about next steps, questions to ask, this website, I think helped her.  She did not know hormonal status or Her2 status.  Did not know much of anything except she was freaked.  She had quit her job.  I told her that that was premature-she loves her work. She planned to have BMX and I directed her to sources of information because that was a choice I truly did not understand.  But, Her body, her choice. 

At my instigation she went back to her place of work and told them she didn't want to quit her job, and they told  her they knew that.  They had placed her on sick leave for now so she could make an informed decision once things settled out. She ended up deciding to go for a unilateral mastectomy.  She is Stage 2 Er+.  And her oncotype indicated that chemo and rads would not contribute much.  (And while this was going on we talked every couple of days.  I grew to really like her.  And I will admit I wished that if she were to be at a later stage that she not be triple negative. Just because my experience here on BCO and personally is that while we ALL agree cancer sucks, Her2+ has so many treatment options.) I am thrilled that she is Stage 2 and Hormone positive because of the treatment options available to her.  That is in and of itself a wierd wierd thing.  

She has years of fear to work through.  Every time she goes for followup for the next five years she is going to have to relive the fear that she experienced when she first heard the c word. When I go for scans, reduced to annually at my request, I have a niggling unease.   But, not fear.  I have already been through that. 

naiviv

Miami Beach is here for all the weather is a balmy 78 now and a walk on the boardwalk at night is amazing place to feel the salt air breeze. If so inclined its a short walk to the beach to get your feet wet, water is still a bit chilly. So join me if you like at this happy place...

Vivian

Anonymous

Wow this thread has sure grown since Ive been sleeping and doing jobs in town. Lot of good thoughts which Ive had to skim over.

 vbishop,

My pupose in starting this thread were two-fold:

1. Find out if others with Stage 1 experience the same thing (the answer is YES)

My apologies for posting. Really. You did say in OP "Hey stage1 sisters".... and I did overlook that. I realize this thread has taken on a lighter approach and I havent been able to answer Caryns post until now which I'll do then I hope to be done unless I have to defend myself against accusations.

---------------------------------------------------------

"I'm in the elite stage IV group,"

By your own words youve spoken it and if you think your superiority gives you a free pass to put everyone else in their place, well Im sorry you might be selling but I'm not buying. Theres other Stage 4s that despise this elitist attitude ... thankfully, one of them WAS my sister.

Musical,

Yes, as Wrenn stated, I was indeed being facetious. You don't know me, of course, but you really made a rather harsh leap to judgement. I feel no sense of superiority, I have never put anyone in their place and there is certainly nothing I am "selling". My only point being that although we do have things in with common bc, the reality is things often get tougher as you go up the ladder and the experience is not always the same. That being said, I fully acknowledge the dreadful experience this is for all of us and our loved ones at any stage. There was no point behind my bring cryptic other than to take a jab at my own situation. Since message boards do indeed interfere with the ability to "read" people it is surprising that you would make such an enormous, and erroneous, judgement about me based on my comment. I am sorry about your sister. I lost mine too,three years ago.

With kindness,

Caryn
-----------------------------------------------------

Caryn I totally disagree with you about "a harsh leap to judgement" AND that "you would make such an enormous and erroneous judgement". I answered according to what you wrote and there was certainly no leap. Nor am I "vilifying" you AT ALL but simply calling you out for what you said. If words have meaning and they do, then I also find it unacceptable you can say what you said then claim theres nothing wrong with it and then turn around and say derogatory things against me. There were no side notes or quotation marks as to what you meant (as people sometimes do to make themselves clear). Other than seeing you in a couple of threads similar to this I don't know you at all and I guarantee Im not the only one. Therefore, I can only assume from your words you meant what you said. These boards are HUGE and theres thousands of posters. I dont see any justification to call yourself elite in a thread that was started because people felt minimized in the 1st place and then to claim humour or that its innocent. If theres a cryptic jibe in it then as far I can see it was a dig at those who've spoken out like we are now and in times past. If you were really digging at yourself, then it was a strange way and a strange place to do it.

Heres something else. People LOVE to fire the "dont judge me" at others after they say something that rides a fine line or is left open to conjecture and then claim innocence or "said in fun". On the contrary we indeed read each others words, how theyre written and make a judgment about the intended meaning, which is a doddle when people say things like they are.

Im REALLY sorry to hear of your sister 3 year ago. That will still be very raw. Mine was just gone 8 yr ago. It is still as raw as ever. Went to visit grave 1st time in ages and I still sob even though I take heart that I klnow where shes gone but I miss her daily.

"the reality is things often get tougher as you go up the ladder and the experience is not always the same."

Absolutely. Yes I get that. I get it in an overall sense and for the most part, if its not more needles it more something else, or the lack of it because there isnt any more point to that particular tx. There are so many variables from every imaginable angle you just can't neatly compartmentalize it complete with label. The only surety is there isn't any. I would NEVER hound a St4 to know something if they didn't feel well or didnt want to answer for whatever reason, but I think those that do want to answer are a valuable source of help.

Blessings and kind regards.
Musical.

Side note: someone mentioned about pming people for clarification. Reckon in same case thats a good option, but theres other times when somethings said in public it should be dealt with in public.

exbrnxgrl

musical,

Truly, the comment was facetious and there simply is no cryptic jibe or any intention beyond a facetious comment. I'm sorry you didn't see it that way and took it so literally. It was just a bit hurtful when you made so many assumptions about me based on just a few words. I have no desire to prolong this conversation as you have made your position very clear as have I. I hope no one ever does the same to you.

wrenn

I'm "tearing my hair out" here over the comment about taking a facetious statement literally. :-)

vbishop

Musical -

No need to apologize. I appreciate your perspective and welcome further comments and observations.  I am so sorry you lost your sister to this beast!

Keepthefaith -

We are closer than you know.  I don't think we can get any further east without running into Hutto.  Old Settlers Park is about a mile away.  I will definitely check out the Hill Country Warriors!  Regarding your comments, I allowed myself to feel guilty there for a bit and crawled into a hole, which, if you know me, is way out of character.  So...I am forgiving myself for going there, however brief. 

Ladies -

I appreciate each and every one of you.  Thank you for weighing in, voicing your opinion, and sharing your stories.  I am surprised that the thread exploded today, so maybe I hit a nerve. 

I have noticed a constant theme throughout the posts:

• support each other
• help each other
• learn from each other
•  become cheerleaders for each other
• offer a shoulder to cry on
• provide a safe place to vent 

 All positive things!!  This is our common ground.  We should protect and nurture it.  No one should have to do this alone.  Even though many of us have great support systems, there is nothing like talking to someone who has been there, done that. 

Anonymous

Facetious, literal or any other way, it's not something I think is a nice thing to say. Sorry you cant see or accept my explanation. Sometimes all you need is ONE word to say a lot, such was the case.

I hope no one ever does the same to you.

Likewise.

vbishop

Nancy -

You are spot on.  Stage 1 today can easily become stage IV tomorrow.  Scary stuff.  I feel blessed to be where I am but know it can change in a heartbeat.  So...let's enjoy each day as best we can.  Don't sweat the small stuff....and everything is small stuff.  Find your happy place often. 

Thanks for posting.

vbishop

Naiviv -

I have to head to Miami!  Sounds great!

exbrnxgrl

Last words... We have have a gallows/black humor thread on the stage IV boards. Most of those gals would think that was a pretty funny thing to say! I do have a very irreverent sense of humor and it's been what has helped me get through this journey.  Chill out, my friend.

Anonymous

vbishop, again our posts crossed but Im a bit of a slow typer so its par for the course with me.. Thx for your kind comment for my siss. It really is a hard road for us all. We have our own peculiarities and where we may be strong in one area we may fall down in another. It IS about helping one another if we can. Sometimes depending where we are in all this, there will be people that come along who are really beneficial and some not so much. Not that that is wrong, but its just where we're at.

Thankyou also for giving me an opportunity to express my feelings on this matter. Im glad you started this thread because thats how you felt and obviously and as we've seen, you're not alone. As I said these boards are HUGE. Theres many areas Ive never been much less know the posters there. I have no idea whether theres been arguments or ructions or not. From my experiences of where Ive been there have been times where things have been thrashed out and other times Ive seen some nastiness going on. It's not new either, and neither is it to be unexpected I guess, with so much going on in peoples lives and then a BC dx to live with.

vbishop

 Nancy B -

Loved your post, especially the part about being a cancer snob.  In hindsight, I think I have been a cancer snob.  Cancer and boobs have found their way into most conversations the past four months, not always my doing.   Fortunately I have moved on.  The new girls are no longer a novelty.  My surgical follow ups are almost done.  Plus I have a co-worker recently diagnosed who has a much rougher road ahead of her.  I am focusing most of my efforts on her.

Continued health!

vbishop

Musical -

We're women.  You can't have a place where a huge group of women gather and not have differences.  It's the way we are made.

Thanks for being here and letting me know its okay to have an opinion.

vbishop

Exbrnxgrl -

I have not been to the gallows/black humor thread, but I certainly understand the concept.  That humor is exactly how my family handles tough situations.  If you can't laugh at things, what's left?

Laugh loud and often!

vbishop

Kay -

It's great that you are helping someone else.  That's what I strive to do at every opportunity. 

I printed a list of things to do to reduce the risk of recurrence.  One of the items was help other women with breast cancer.  You're already a leg up on this!!

vbishop

Slow -

I enjoyed reading your posts.  Thanks for weighing in.

NancyHB

Caryn, when I read your comment I knew it was facetious.  And it was funny.  And it wasn't.  Only because it's so scary and in-our-face, and so very sad.  You are one of the "special," the few, who have progressed from a lower stage or been diagnosed from the get-go with the place we all fear to end up one day.  For myself, I can hear your words for what they are intended to be - facetious (because after reading your posts for over two years I have a sense of your style of humor) - and I can own my reactions to those words (because I thoroughly enjoy a dark sense of humor, and because I am scared to go where you are).  Maybe there is a bit of truth in your words, too; that doesn't have to be a bad thing.  There's a reason the Stage IV forum is meant for those who are or are caring for someone with Stage IV BC - those of us with a lower stage don't always say the right things or ask the wrong questions, and there is some safety in that forum for those who must be there.  

In the end...as I said before...we are all here.  It sucks.  But I am glad to be supported by a strong group of women who understand my fears and concerns, and try to keep me reasonably sane (not an easy job!) 

Anonymous

Chill out, my friend.

Are you talking to me? If so, I find that condescending if not presumptuous. I don't need YOU to tell me what to do. Im quite OK thankyou. Just FYI I don't go to the ST4 Forum because one sided conversations are something I dont find helpful. I refuse to be an outsider looking in or a spectator so I have no idea what you do. If youre irreverent and call that funny I wonder how many people you offend?  Lastly whether St4 or St0 I would happily have conversations with them all.

ziggypop

"I'm "tearing my hair out" here over the comment about taking a facetious statement literally. :-) "

LOL - good one wren! 

Musical - When somebody says they are a member of the elite stage IV club, you really should know that they are meaning it in a humorous way. 

vbishop - It may be that people have not recognized the extent to which you suffer with this disease and all of the things that go with it, and it's certainly less forgivable, and perhaps harder to understand when people who have cancer themselves 'downplay' (or in your perception - which is always a possibility- 'downplay') your feelings, fears or experiences. 

It 'works' both ways - I have tried to talk to friends and family about my biggest fear - which is, of course, that 35 to 45% chance that I will die of this shit sometime in the next 10 years - only to be poo-pood as either 'having a negative attitude" (not negative, but realistic and yes scared) paying attention to statistics when everybody 'has something' (they do - on average the woman my age have about a 5% chance of dying in the next ten years, my 35% to 45% is on top of that. This has come from both a woman I tried to talk to who does not have breast cancer and 2 who I know who do have BC - one with DCIS and one with Stage 1 (the one with stage one informed me that I needed to have a positive attitude). 

But really - I don't believe they were intending anything by it, it's just that they could not allow me to express my fears which are legitimately real - not exaggerated in any way shape or form - fears. Just today, I had my oncologist kneeling by my side, saying - "I don't mean to scare you, but..."  

And then there are those who are stage IV - and however much I may have in common with somebody who is stage IV in terms of my BC - I know with every fiber of my being that they go through a completely different set of experiences emotions decisions hardship and just plain pain than I do - and no, I can not begin to say that my cancer is the 'same' as theirs. 

It may be that on these boards people word things in such a way that they (we) mean something they (we) don't - or maybe somedays we are just out of sorts or not thinking sensitively enough about other people. Sometimes people just think that we mean something entirely differently than what we did - case in point above. Is there any possibility that you felt excluded from the support group you were in for any other reason than being stage one (maybe they were a group who had been together for awhile)? I hope that I have not ever made someone feel that their issues, experiences, etc. were somehow not important, if I have or do in the future, I apologize and would hope that that person would let me know at the time so I had the opportunity to apologize and recognize what I was doing.