I'm (NOT F'*%$@#$) "OK"!
Comments
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I find it best to respond just to the specific questions and not volunteer anything more. I realize that most people do not know any thing about any disease unless they or a close one has it or had it. Most of the specific questions show that people are interested in knowing what symptoms I had and how I found it. I am happy to share that information because I think that helps raise awareness and hopefully leads to women getting early and regular diagnostic mammos and BSE's every month. Any one that asks a general question like "Are you ok?", I say "as best as I can under the circumstances". Even very educated people have no clue and they believe that BC is 1 disease and everyone gets cured due to the "recent medical advances".
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Blue, loved the video
I have to wear a badge at work. At least 3 times a day someone says to me "boy you don't look like your picture anymore." Yes, I know it, its been less then a year but I'm heavier, older looking, and no longer have long hair and bangs, and thick eyelashes, but did you really have to twist the knife in again? I just smile and nod.
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this is precisely why I told so few people--- I knew I could not deal with the "how ARE you? comments...most of the people in my inner circle on this had bc at one point or another, so they know the drill. But when anyone asks me (now or before bc) how I am, I always say "great" because in general, it is true. I had my health and I now have it back, and everything in my life is fine.... I have some joint stiffness from the meds- but I figure most people in their 40's have some thing or another--- and the truth is, most people don't want the details.
One thing I do do when the chance presents itself is to make sure that women understand that mammograms are not the only diagnostic tool, and often mammos miss things. Not trying to scare anyone, just calling it like it is...I also tell them how lucky I feel to have found it early and have been able to have it treated--but in general, in my day to day life- I don't find myself talking about it too much--- it is really in my past (coming up on a year) and I have found that other things in life have taken its place--as it should be!!!
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Reading this has really made me think. I appreciate all the candid conversation here. It also makes me want to ask this: what would be helpful for people to say to you? What do you wish they would say?
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I have been known to answer the question, "How are you?" with "Living in fear but besides that fine."
Also, I have had people lately say, "Well, once you make it 5 years you're cured, right?" Uh...not really. I hate having to address that.
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I'm still amazed that any of us feel we have to share our diagnosis with anyone. If you do, you are putting yourself in that awkward position. Too late the advice, I know.
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I don't want people to treat me different...or special! Just treat me like they always have...I am not the nicest person in the world..but I'm not the nastiest either...just because I have BC doesn't me you have to treat me differently. But mostly I hate the How ARRRRREEEE you? I just stare at them..and try to be polite and just say I'm fine..I'm busy, I'm working..leave me alone! I honestly don't care about their 80 year old mother who is refusing chemo or their other stories.....
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When I was first diagnosed and people would ask I would say "I am recruiting help. I am asking friends and family to send me nice stories or humor to help with my frame of mind." As a result I had a ton of support and laughed almost everyday. Even if the jokes were not that funny I felt the love and good intentions of those sending me things and that was very comforting.
Notice that I did not actually answer their question, but took advantage of the opportunity to tell them how they could actually help me and molded there behavior into something that felt good to me rather than offensive.
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Good for you Merilee!
Leah
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Admittedly, I'm just at the beginning - diagnosed two months ago, surgery later this month, chemo November, herceptin after that.....but everybody knows, and I have gotten that question.
I just say, "I'm sure I'll be fine, thanks" because so far, that's the way I feel. I don't volunteer the pain I'm experiencing due to the cancer, or that I'm mourning the loss of my breast in advance, and feaked I am that chemo will make me too sick too sick to only take the four months with pay off that I get - because I don't think most people really want to know those things.
Aquaintences who ask that question - I don't think they are really asking about YOU - they are asking about themselves.They want reassurance that you will be okay, that you aren't going to die, and they don't really know what to say. I take no harm from it.
I did have one woman who came to me and said, "I never know what to say to you." And, I told her to say anything she wanted, I'm still the same person, a cancer diagnosis hasn't changed that. Somebody else was complaining about something minor, a flu or something, and then she stopped anad said, "Oh, I shouldn't be complaining in front of you!" I told her, of course she should! Just because I have a disease doesn't mean you can't feel bad.
Maybe after surgery, chemo, herceptin, loss of hair, staging - I'll feel very differently about that question.
However, since I'm blogging my experience, I think I'll just get business cards made with my blog name, and when somebody asks me "How ARE you." I'll just hand them a card and tell them to find out.
I'll revisit this thread in December after I've begun my chemo and have lost my hair, and we'll see if I respond differently.
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Now that I am done chemo, people who ask seem to think that all should be well now. Many think that the wig is my real hair. They don't know about the continued treatment of Herceptin, Femara and radiation and ongoing concern about a recurrance. Nevertheless, after umpty two years of being paid to be consider other people's feelings (I was a high school counsellor) I still try to give an answer that makes the other person feel OK. My good friends treat me like me, for which I am unendingly grateful.
A small part of me is waiting for someone to say something really stupid and give me cause literally to flip my wig. A larger part is happy that no such occasion has occurred.
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I had someone say that breast cancer is curable if caught early.....Uhhhh...I don't hink so you half wit!.......
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Well, as far as I am concerned I AM cured of breast cancer. I might get it again (I know my risk is higher than those who have never had it), but right now I am cured. I know others with more advanced stage conditions can't say that, and I know I am lucky. But lucky I am, so now (half way through radiation after 6 months of chemo) I don't feel too bothered by people's increasing assumptions that I am 'better'. Because I AM better, though not yet fully well. And people treating me like I am well is helping me feel like cancer is really in the past.
My most honest answer to the question "how are you" during my dismal times was "I really don't know" and I still use this sometimes if the person asking is someone I feel comfortable with. Because often I really could not quantify how I was feeling at all - my emotions fluctuated so wildly.
The one I used to hate was "howareyouyoulookgreat" said all as one word. It gave me no room to say how I was really feeling. I know people meant well, but man did it bug me.
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This thread has really made me think about how uneducated we are until a disease happens to us.I am a nurse and I knew nothing at all about BC until it was in my breast. I have not always been tolerant to ?"s but now I try to educate everyone who will sit still. My DH is very angry when people say "you are cured now right?" and I say "well when I was done with tx. last year I actually thought so, but I now know that BC is not curable, but I am in remission and I hope I stay there until I am very, very old". I tell them about AL's they have heard of course about chemo and radiation but not about Tamox or Al's. I was just back in my hometown and my gf's had a party for me and we did the Komen walk, afterwards I taught them about the various BC's and none of them had ever heard of IBC!!!!!!!!!!!!! WTF.I hope if I have said stupid things to women in the past they will forgive me for my ignorance.
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Hi Deanna!!!!GOOD to see you as i lost track of you!!!ALL is well enough and as you can see bymy avatar.. hair is slowly coming back.. it is 4 mos yesterday of post chemo!!!
On my way to NY to see my 90 year old DAD.. last time he saw me, was two weeks from my last treatment with a wig!This will be interesting as image has always been a big thing in my family!!!
The comments here are priceless and laughing so hard...you are all Princess Warriors and the courage shines thru each word and post!! PJ..trophy wife...THAT IS TOO FUNNY!!! IN the scheme of things!!!! We have to have the humor or we will really be in trouble.'
I was checking out of grocery line one day, the checkout gal knew me and sees me and automatically compares me to her sister who died of lupus (what the heck) and then the gal at the register compared me to her aunt who fought b.c for years and then died.. well i stood there stunned as i ended up comforting them and they were both crying!!!!!Go figure!
Will stay in touch here as this is the style of sanity i need right now in my journey!!!!SHE.. are you still flipping the Lid..my hubby said i should do that when i was goin thru the idiot run in's!!!
You are all awesome!!!
Donna
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DonnaDio: I forgot that when I told my sister in law that I had BC she sent me an email telling me about her friend whose "breast cancer has returned, and spread here, there, and the other place". What she was thinking when she told me that I do not know....but I realized she would not be a good source of support right then and there...and she hasn't.....I look back now and I almost want to laught but at the time it was awful to hear...
Anyway for me not wasting time on anger is important and I just go forward. I have a close friend who actually does listen and does care. It is hard to find someone like that.
Cheers.
Mandy
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I thank you all for your honesty and humor in discussing this. Sometimes my tshirt with " I Have Issues" says it all. Hugs, Nancy
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Kiss my 118 pd butt Shokk,,,, bahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
That's my sob story and I'm stickin' to it....
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I love this topic heading. If people assume that I'm fine, I do matter of factly list my syptoms. I hate for anyone to have the wrong idea. No, it's not like having a cold. It's very unlikely the other person has any clue what's going on.
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Kermit the Frog used to say " It isn't easy being green ". Maybe something like " It isn't easy being a cancer survivor ( or patient )". Or " It isn't easy being ME "
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What a badly needed thread! For me it's the tone when they say "How ARE you?" , like they don't know if it is OK to ask so it can be taken as just a polite greeting. I tell them like it is now. For awhile I just said I'm doing OK. But now what I tell them is the truth. "i'm doing OK, but it's a crapshoot. People witha worse dx than me have never gotten it back and people witha better dx than me have had it come back. You just can't tell what it's going to do". I think most people have no idea that when we are "through" with treatments/surgeries, that it is just the beginning of a lifetime of hoping/praying that it won't return.
I went without my wig in public for the first time last weekend. I went in a "Lids" store in a mall. I had on a NE Patriots jacket. The salesman approached me and told me they had some new Patriots hats in. He walked over to them and pulled one down. He said "this one is my favorite. It's the breast cancer awareness one." I felt like telling him to shove it up his a##, that I was already aware enough! I was a good girl and said "do you have any white ones?" Next time I don't think I will be that nice.
Gayle
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Great thread!
I think I am now finding that I've reached people's fatigue stage.
My journey has been rather slow (DX this May, Surgery June, infection/illness. now half way through chemo, rads etc to come, maybe axiklla surgery) and I think now people are just bored with it, whilst for me, it is actually getting to the worst part of the journey.
It is the tyranny of "everyone gets better don't they", "my cousin had a lumpectomy and she's fine".....etc.
Luckily in the UK we don't have the same sort of Pink thing - this sounds awful!
Overall I am starting to find that it is people I haven't been quite so close to in the past that are turning into my closest allies.
Genuine friendship is a treasure wherever it can be found, as we know.
Love Gracie's "ok but for the CANCER thingy...." !! Have definitely noted that for lots of usage!
xxxxxxxxxxx
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Hey Virginia, whats up with no pink in England! I think I will send someone over there to begin the Pinking of England LOL!
Maybe we could say " It isn't easy being Pink"
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Well i am still irked at people who think just because we are through treatment (which is like 5 YEARS after surgery because of the Tamoxifen and AI"s).........They think we are CURED!......They think bc is curable!......I WISH!.......BIG SIGH......Just feeling really really low right now.........Thanks fo rlistening!.......
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You know the saying "Bad news travels quickly......" Well, at DX i tried to pre empt all the ' Job's comforters' and 'well' meaning comments by not telling anyone, other than my immediate family. and closest girlfriends. I quickly discovered that that doesn't work, and perhaps asking for their 'confidence' was asking too much. This Dx affected them too, and they needed/ or inadvertantly shared it with spouses, etc. It was like free entertainment to me to "guess" who "knew" at social events(My MX came just prior to Christmas last yr). I'm bad
! I could always tell; 1) they always darted a look at my chest, lol 2) they stayed across the room - lighter? 3) or would devulge their knowledge..... and often would make a comparison to "if it were them...bla bla bla". That they wouldn't be "so strong"!? and often men would feel a need to compare me to their wives..... that they were SO impressed at my attitude and strength(like i was different!!??)Damit! IM NOT ANY DIFFERENT THAN THEY IMAGINED IF IT HAPPENED TO THEM!. I learned. WE GREW!
I suppose i have now accepted that 90x's more people know about my personal health and intimacies of my body, future, and lifestyle changes than what SHOULD !
It's up to me to "lead", i guess. I had to get to a point where i could accept that. I really preferred my private life..,.. didn't we all! I didn't volunteer for this disease or gene selection. I did EVERYTHING i thot humanly possible to avoid it, in fact.
If B/C has to be my identity now, it doesn't have to be my COMPLETE identity. I am looking for a way to convey that in one response( maintaining regard for our 'role' to educate, but our 'right' to privacy).
I see , once again, I am being called to 'rise', 'be better', learn!, LOVE and let go..... SIGH.....
xo
p.s. The Vinne Barbarino trick might be the summation of ALL that!!!! lol!!!! I'm guna practice that today!
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Yearofthehat... Greetings from England.
Completely lost my temper with someone last night and yelled "I am not just suffering from the common f***ing cold you stupid cow".
I felt quite enlivened for a while.
Perhaps it is just me. Perhaps my dx was exagerated or something.
Perhaps I will wake up and this will all turn out to be like Bobby in the showerr in Dallas during the 80s....................
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"So Mrs. Kennedy, what colours will you be wearing next Spring?"
Great quote sunflowers!
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I think most people are greeted with ,"How are you?" It's simply a polite greeting, and they don't really want to know.,. I'm ok is a good response if you're still breathing, . What if no one asked how we were. Now that would really piss me off
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I have had quite a few people say - "I don't know how you do it"--- oh.....do I have a choice???!!!! Or "you are so strong"-- NO I"M NOT--- I am weak and scared and vulnerable and angry and sad. Tami
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"I'm hangin in here." is my most common line. shows im not letting it beat me but that im still in battle.
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