I'm (NOT F'*%$@#$) "OK"!

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  • GramE
    GramE Member Posts: 5,056
    edited October 2009

    I still think the prize goes to " on the right side of the dirt "....  or I didn't see my name on the obituary page.   

  • Alwayssearching
    Alwayssearching Member Posts: 47
    edited October 2009

    Great post.  I am sure people are sick of being around me.  Because I am not okay!  1 month after my last round of chemo, my husband died suddenly of a heart attack.  My life sucks right now.  I can't fake it.  I wish people would stop telling me I look pretty with my short hair...or they like my hair cut (what hair cut!).  Or they tell me how fast my hair is growing in - and I repsond that I have been bald for 1 year now! 

    Most people ask how are you out of habit.  Some are expressing real concern.  I want to scream.  How would you be?  First my mom dies, BRCA1 Dx, have my ovaries removed, then I get BC and have my breasts removed, chemo, THEN MY HUSBAND DIES.....

    Who really has the nerve to ask me how I am doing?   Surviving at best!

  • comingtoterms
    comingtoterms Member Posts: 421
    edited October 2009

    I always smile and say, "I am doing the best I can with what I have been given."  It sounds rather profound, usually makes people pensive and then I just walk away.  Tammy

  • kmccraw423
    kmccraw423 Member Posts: 3,596
    edited October 2009

    I have not caught up entirely with all the writing but will do so soon.  Sharon - I am so sorry.  If I were closer I would come hug you.

    Once I told a woman who was 40 having her first child and about 7-9 months pregnant that she looked really good.  Her response - that's what forty pounds of make up will do for you.

    When someone, especially one of my doctors, at follow up appointments tell me  "You look great" and be so enthusiastic I say I must have looked like s**t before.  Of course I look better, I am vertical, have make up on and my done.  I am wearing colorful clothes.  I am not lying in a hospital bed, hair greasy and flat to my head, no make-up, sick, and dressed in one of those wonderful gowns the hospital gives you!  I would hope I would look better!

    For the most part, I don't think people mean to be insensitive and most "How are yous" are just habit.

  • spar2
    spar2 Member Posts: 6,827
    edited October 2009

    Sharon, there are no words that can be said to you to make you feel better but know that we are surrounding you with love and hugs and will be here for you to talk to 24/7.  You have  been through so much and it stinks.  gentle hugs Sherry

  • GramE
    GramE Member Posts: 5,056
    edited October 2009

    Hugs and Blessings for everyone.   Special HUGS for you, Sharon.  I was widowed 6 1/2 years ago and recall the horror of it, added to BC - just how much CAN one person endure?    

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited October 2009

    I will still stick with "I am here"

  • rubyredslippers
    rubyredslippers Member Posts: 228
    edited October 2009

    Its been over a year for me and I still dont have an answer for this. At least I suppose it's good youre being asked. No one ever asks me, I think most people assume that your hair is back, your 'looking well' and all the treatment is over so it's life back to normal and nothings changed.

    No matter what Ive said to people I know that unless theyve been thru it they dont understand, so why bother?

    By the way I have to work, and where I work there's a lot of people who push me around, and generally treat me badly...even though they know what Ive been thru. Ive become a little dead inside in terms of my outlook on other people. 

  • Bellz
    Bellz Member Posts: 43
    edited October 2009

    Oh my goodness DON23 your post surely hit home. I am tired of hearing about my perky new boobs and how lucky my husband will be. I have told a few people that said that rude statement that I would be happier with my old saggy ones and so would my husband! Also since I am ranting a bit...so the cancer is gone and everyone is saying how great that is..but they don't understand what I had to go thru to get rid of it..and what I am still looking at for reconstruction, emotionally what I see when I look in the mirror, those lovely red scars. I AM glad the cancer is gone. But, call me crazy I don't think I want to celebrate the loss of my breasts, the months of agony, the countless surgeries to get to that point. Yell

  • rubyredslippers
    rubyredslippers Member Posts: 228
    edited October 2009

    Bellz; I dont understand, why did you have a mastectomy when your cancer was DCIS?

  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2009

    I'll be travelling to the U.S. soon to see my family. My sisters and parents know what I'm feeling (or at least as much as anyone can) but I'm not sure what the reaction of other family members will be. I want to see them but dread it at the same time.

    rubyredslippers, sometimes mastectomy is done for dcis. It usually depends on the size of the tumor and/or family history (BRCA).

    Leah

  • Katey
    Katey Member Posts: 733
    edited November 2009

    I need this thread today, am about to go to an event where I'll see many people and really don't want to answer any how are you's.  I told some friends, but did not want anyone else to know I've been diagnosed a 2nd time.  Of course it's leaked.  Some of those friends have barely bothered with me, some who it's been leaked to have shown amazing compassion.  I'm nervous.  Maybe I'll run out and buy a fabulous disguising top to wear, but dread trying on things with this soreness and trying to find something that looks good. I will practice saying some of the suggested answers!  Love the f i n e one, that will put a smile on my face as I answer!  and love the still kicking but not very high (what a great dad!) just afraid I might act out and actually kick someone:)

    Here's one, years ago after first dx, someone yelled to me across a busy playground "what's your prognosis?"   I almost fell on the ground laughing, it was so crazy!

  • megryan57
    megryan57 Member Posts: 83
    edited November 2009

    "All I know that "I'm fine' is a lie". I feel exactly the same way. It's really a rhetorical question when people ask. They want to hear "Yes, I'm better now." I'll never be the same. That's what I want to say. Thanks for sharing my same feelings. Sometimes I feel so alone. I;m supposed to be nothing but grateful that I;m alive, right? No other feelings are validated.

  • megryan57
    megryan57 Member Posts: 83
    edited November 2009

    Ruby, I had DCIS and it was so extensive that mastectomy was my only option. I chose to have a double so I would never have to go through it again. A good choice since "suspicious" cells were found in my "healthy" breast. Unfortunatly it seems some practitioners don;t view DCIS as "real" cancer. Thank God that wasn't my experience.

  • don23
    don23 Member Posts: 512
    edited November 2009

    girlmace-I like your avatar! Where did you get that t-shirt?

  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2009

    Depends on my mood, how much I like the person askingWink, and whether or not it's a real question. Meaning, is it a good friend who is truly asking about my health.

    When it's a "real" question, I say (as gently as possible), "right now there is no evidence of cancer in my body, I'll be checked for the rest of my life to see that it stays that way, but for now, I'm doing OK!"  (accompanied by a reassuring smile)

    When it's not a real question, I say, "I'm doing great, how are you?" (pretending I have no idea they're asking, "so, what's your prognosis?")

    When it's not a "real" question, but they actually have the nerve to say, "so, are you cured?" or something to that effect. I say, "There isn't a cure for breast cancer, but they have removed the cancer that was in my body. There's no way of knowing if it will come back or spread."

    It's more frustrating on some days than others I guess, but I mostly try to remember the wise words of a friend of mine, 'I would rather assume ignorance than malice." when someone says something dumb to me.

    Happy Thanksgiving all, eat good food!

  • hollyann
    hollyann Member Posts: 2,992
    edited November 2009

    You all can use my "I'm on the right side of the dirt" answer all you want......Rubyredslippers, so sorry for your losses....You have been through real tough times.....Gentle hugs to you.....

    I wish you all a blessed Thanksgiving Day.....

  • Jane_M
    Jane_M Member Posts: 1,549
    edited November 2009

    I just had my second mast...this time the right side.  It was sort of prophylactic.  My mammo showed something the radiologist wanted to watch for another 6 months....no thank you.  I am so tired of being happy, perky superwoman.  My DH had the nerve to call my therapist because I am napping in my chair in the evening and he thinks I think people would be better off without me.  Of course I'm falling asleep....look what I've just gone through!!! And I worked through it all and I am still working about 55 hours a week.  And he doesn't like the girl I have coming in to clean the house 2 hours a week because she moves his stuff (like putting the ladder and shop vac OUTSIDE).  I'm not depressed, just exhausted.  Now with the 2nd mast, I feel like I don't have the right to say that I'm in pain and it sucks.  They just expect me to come home and be normal. Yesterday I had a bag of twizzlers and 3 candies for breakfast and lunch!  OK, I better stop now.

  • CyndiS
    CyndiS Member Posts: 42
    edited November 2009

    It is good to learn that what I'm feeling is "normal" - I am not one of those cancer patients with a fantastic outlook and positive state of mind. I am just getting into this and still do not know what type of surgery I am facing (in the next couple of weeks). I was scheduled for lumpectomy and sentinal node biopsy when my MRI results came back that the cancer was more extensive than they thought. So I've had another biopsy and am likely facing a unilateral masectomy. It's been a really difficult thing to adjust to - it hit me especially hard the first couple days after hearing it and I bumped into a friend who I hadn't seen since the first positive diagnosis. When I told her, she launched into this (well-meaning) lecture about how I had to be positive, lots of laughing and all positive thoughts and people around me. Meanwhile, I just wanted crawl into a cave and cry. Or pop her one. I wanted to say  - 'just shut up. Stop talking now.' I know she meant well, but I couldn't believe she was so insistent on how my attitude should be. Now I don't want to talk to her any more. I wish it were easier to put up a front. And I haven't even faced the worst of it yet. I don't know how I will survive this emotionally.

     I am grateful to have found this forum and am very grateful to all of you for having the courage to be honest here. Thanks and hugs to you all.

  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2009

    CyndiS - Yup, totally normal! And here's the thing, if she's a good enough friend, you should be able to say, "Look, I know you're trying to be helpful, and I'm sure I'll get there eventually, but you need to understand that you're telling me that if I don't survive this cancer it will be my fault because I haven't been positive enough, and I really can't hear that right now. I just found out that I have CANCER and I'm TERRIFIED, surely you can understand that and allow me to feel sad about this news that has turned my life upside down?" If she still keeps it up (and unfortunately, some people will) just do your best to limit your exposure to her.

    And hang in there, keep coming here and let us know how you're doing, you'll get lots and lots of support here.

  • EWB
    EWB Member Posts: 2,927
    edited November 2009

    Oh Cyndi - I am so sorry you are going thru this! Right now it's all about you and what you need to get thru (and you will, I promise) not what others need of you. Cry if you want to cry, yell if you want to yell, be quiet and still if thats what you need; one day at a time.

    The ladies here are amazing, supportive, full of imformation and knowledge. There is always someone here to chat with, cry, laugh (that will happen again), yell, be angry, sad, whatever.... someone to guide and hold you thru this messy maze.

    I hope you are able to find a quiet, peaceful place where warm healing light surrounds and holds you

    . Gentle hugs, Elaine

  • Bellz
    Bellz Member Posts: 43
    edited December 2009
    TO RUBYREDSLIPPER------because it was freaking everywhere...and if one more person tells me that dcis is freaking not cancer then screw them!!!! they don't operate on people that don't have cancer. I also have something called cowden syndrome...look it up!!! SO TO ANSWER YOUR QUESTION WHY DID I HAVE A MASTECTOMY FOR DCIS, WELL TWO LUMPECTOMYS DIDN'T GET IT...BECAUSE I WOULD DEF HAVE A RECURRENCE BECAUSE OF THE COWDEN. I didn't get my freakin breasts cut off for a good time. It was a horrible thing to have to do and not a day goes by that I wish it hadn't come to that, but they are gone and hopefully now I can live a longer life to love my family. I also have potential to get thyroid cancer with the cowden. So after I get the bc stuff taken care of my oncologist is going to do some tests to make sure that is all clear. YES CANCER IS A REALLY GOOD RIDE! Sorry this is so rude, I am extremely depressed, and being asked why I had that done just hurt me. I didn't want it done at all but I had no choice. Cry
  • dee1961
    dee1961 Member Posts: 1,672
    edited December 2009

    Kinda like "why did you have chemo if they did mastectomy/lumpectomy?"

    Because you do what you have to do to be cancer free and live - DUH

  • don23
    don23 Member Posts: 512
    edited December 2009

    Bellz - I agree with Dee. You do what you have to do to stay alive as long as you can. If having a mastectomy does that for you so be it! Don't worry what other people have to say about this issue. Sometimes it is a personal choice and people should respect that. I myself was told by two surgeons that I only needed to get a lumpectomy but decided to get a bilateral mx because I wanted to do everything I could at that time to prevent this terrible disease from coming back. I did not do chemo and sometimes I am scared that I did not (my oncotype score was 11 so no chemo for me). I was just so happy at the time when the onc. said no chemo but if I wanted to I could do it. I feared the chemo more than the bc. I hope I don't regret that decision. The decision was made and I told myself I couldn't look back at the "what if". Some days it is harder than others. I sure hope I did the right thing.

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited December 2009

    I gotta chime in on this one...the morning of my 'determination' appointment (already knew from the biopsy it was bone mets) my good-meaning neighbor stops me and tells me that everything is going to be ok. 

    I looked at her and in the calmest, matter of fact voice I could muster said - 'No, it will never be ok.  You do understand that I am facing a terminal illness for which there is no cure.  There is treatment and I will avail myself of whatever is available and be the best that I can be for as long as I can be. This is not a cold or the flu - this is cancer and it is now in my bones.  Please don't ever tell me again that I am going to be ok...OK?'  With that she started to cry and then I felt bad but the next day, her daughter is running all over the place telling people that I am dying.  Geez.  That was in September - she visited my house for the first time since my dx last week. 

    My response to anyone now is simply 'I am the best I can be at this time.' 

  • desdemona222b
    desdemona222b Member Posts: 776
    edited December 2009

    "I'm hanging in there."

    "No, breast cancer sucks and I'm going through hell."

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2010

    I have been wanting to read this thread for sometime...I finally started it today...I am only half way through.  But a few posts got me wanting to reply now.  I love everyones responses..."Give me Drugs"  

    I have very mixed feelings about this.

    For one thing.  All my friends left the second I said BC.   I mean- totally gone, No Call , no card, No email, No food brought over after surgery(s). So they certainly arent around to ask how I am doing either. It would probably have felt good to have been asked how I was doing.  

    I have a few aquaintances that have asked how I am.  It doesn't bother me too much...As that is what people say here to anyone "Hi, How are you doing" I always reply "fine, How are you?" And since I know what I have been through- I now actually care how they are doing.  

    Unless they whine about nothing.  

    I work at home by myself...(Or rather I used to when my Business was doign good BC).  So I dont have to deal with co workers asking how I am...But then of course I still feel that may have been ok for me. & Made me think someone actually cared. (even if they really didnt)  

    My Family asks me how I am doing & I tell them honestly how I am...which usually is not good.  They are probably sick of it- but they listen.

    Dhs family has never shown support for me & that includes asking how I am doing ...even after another surgery.      

    I had one ex friend I ran into.  She had a B Reduction this summer...She said to me after I have had 6 surgeries in 18 months- "Well surgery really isnt that bad is it." Its like- It sure is in my book- Im sick of the pain & recovery, Not getting to enjoy summer & never getting time to get back to exercising or anything else before my next surgery.

    One surgery would have been fine, I think!

    I do think that until you face a health Crisis...You really do not know what it is like (So I try to forgive their ignorance)

    Pam

  • EWB
    EWB Member Posts: 2,927
    edited January 2010

    Hi Pam - how ARE you doing? I know we spoke about some stuff a while back - what did you end up deciding? Hoping you are as well as can be, and all the best for a healthy new year!!

    Elaine

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited January 2010

    Hi Elaine,

      Im Fine- LOL  Hope you are doing ok.

    You can look at some of my old posts to see what surgery I have been up to.

    I cant remember where we left off.  I did stop the Lupron & had a Hyster.  That went so so.  Had some complications that I live with from that.  But they have improved- so thats good.

    I had my Stage 1 Hip Gap 8 weeks ago...

    I stopped cleaning my house that is for sure- LOL.  

    Someday I will try to get back to that.

    I miss your posts- Im not on any threads lately.

    mainly Just a NOLA thread right now.

    Pam

  • kayakgirl
    kayakgirl Member Posts: 172
    edited February 2010

    I try to be upbeat but I am sick of this disease. I had reconstructive revision surgery on Friday where I had my sides fixed and had a fat pad that still has breast tissue removed. Now I am worried will they find any surprisng pathology (i.e. breast cancer cells). I feel like crap, can't shower, can't exercise. So today I am not f***king OK. I was dx in June 2008 and I keep asking myself when am I going to get my life back.

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