Lets do a Sh*t People say to Metastatic BC Patients
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Here's another one I will never forget....I developed severe arm pain on lx side three months after surgery and rads. I also had swelling in lx breast. Bone scans and sonos were done. I was referred to my BS for another opinion on swelling. She advised me that all was "normal" - don't you love that term - "normal", meaning "normal" for a cancer pt. I told her that I felt that something was not right. She assured me that it was very unlikely that a recurrence or mets would occur within the first year of treatment. Oh really? There were still active tumor cells found in my orig. tumor - chemo was determined to have "incomplete response", I have triple neg. disease - What would make her think it was not possible? So, she gave me hug, sent me on my way, and told me to return in 6 months for "routine" check - there's another word that has different meaning now: "routine". I did not feel like driving the 3 hour drive home yet, so I walked to a park near my BS office. My phone rang - it was my onc's office - They wanted to see me right away - told them no way as I was 3 hours away. I demanded to know why. NP told me several lesions were found in my lungs on bone scan, and i needed a CT. How ironic that 10 mins. after being told "don't worry", "you will be fine", I discovered I had lung mets. What a ride home that was! I hardly even remember the drive as my head was spinning. Felt like driving off the end of the ferry on that one. (There is a ferry ride over Lk. Champlain on my journey to BS. There is no BS. in my town).
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I'm on a roll today...I often have people tell me "how good" I look, just because I happen to put on some make up, style my very thinning hair and put on earrings. I would rather them just skip it, but I know they mean well - it just translates as "you look so good for someone who has Stage IV cancer"...I live in a very small town, so most people know this is a fact. The one that really gets me is, "At least you have the kind of cancer that is not painful" - WTF? I used to just smile and change the subject, as yes, my orig. tumor was not painful, but now I respond with, "Yes, but the treatments are painful", or for those who know I have mets, "Yes, but lung tumors are quite painful". I know that response makes people uncomfortable, but I do not care. Its not that I want my pain known or shared - I just want people to say hello and move on. I dread going to the grocery store and running into people I know. I hid in McD's yesterday, with my grandson as my look-out, while we fled to my car to avoid two people who would have asked me a million questions!! In fact, today I ordered groceries on-line from a home-delivery grocery service. There is a driver in my area, so the food will be delived to me Tues. between 1 and 3 p.m. The food is a bit more expensive, but the quality is good, they have coupons on-line and sales. They also have a kids page filled with items my grandchildren like. The only thing I will need from the store is milk, butter, bread and fruit products. My dil works at a health-food store, so I will give her a list and money when I need anything, as I see her every day. Its not that I am hiding my disease - I just do not want to continuously answer questions about it when I go to town.
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okay - last one for today...Don't you dread when people use that cocked-head to the side, with pitiful voice, when they ask how you are doing? I just hate it.
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Yes! I hate the "I care" face. My best friend does it beautifully - she waits till I bring it up, then asks the most intelligent questions. Granted, her Mom is in health care, and she grew up trailing her - home birthing midwife and all that.
But, still, for the rest of the folk out there, ask us about something else! We'll bring up the Cancer Stuff if we want to talk about it.
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I was told how lucky I was to get disability living allowance and no longer having to work.
I loved working -plus I get in a month wat I earned in a week. yes the benifits help pay my bills - but no money left over for holidays or just buying treats.
I really can't understand, if getting benifits because I am ill with stage 4 cancer, is so great - why no one wants to swap- not even the idiot who seemed to thin I was on a good thing.
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Oh yes, harvey - I get that one too, and although I am so appreciative of the benefits, as a teacher, I brought home twice as much each month! Many people believe I also rake it in through teacher retirement benefits - I don't, as I only had 14 years of teaching in when I retired. I would have made twice what I make now if I made it to 20, but just could not hang in there with illness. I am glad I retired, though, as I care for grandchildren M-Thurs., after school until 8 p.m. I love every minute of it and do not miss teaching!
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blainejenni - I agree - we have a lot more in our lives to talk about than cancer! (Wow, what a cold day in upstate NY - just had a little snow - not bad, though, just the "styrofoam" kind that falls in spring.)
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Ok...this might upset a few people so I apologize ahead of time. I just have to get this out of me:
Even Stage IV people can talk/type before they think.
I can't tell you how many times I have read on this forum, "at least it is only bone mets" or "thank G-d it's not in my organs" or "thankfully, it's bones only and not the dreaded organs, UGH!"
Really? How does one think that such statements are not hurtful to those of us with organ mets?
I get a big frowny face.
And again, I apologize if this hits a nerve but it has hit my nerves a bunch.
I'm not even sure I'm explaining my thoughts properly (chemo brain). I just know I can't be the only one that feels icky when they read such a post. Or am I?0 -
Superfoob, if anyone is offended, they choose to be. It is simply thoughtless for someone to land here and say that kind of thing, and I've complained about it offline before. I understand that people are grasping at whatever twig might poke out of the side of the cliff they are tumbling past as their way to stop the plummet. But there is no excuse for articulating such sentiments. I care very much when my friends and family members or people on the boards experience painful or frightening things, but I don't believe in ranking them and don't find solace or gratification in others being supposedly worse off than I am.
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Thank you, Surly.
I think you said what I meant but better!
This is my "all mine" place. Nobody "knows" me and as a result, enjoy coming here.
I don't usually post anything other than "positive" things (helpful hints, yeahs, and me toos) as I don't want to get "flamed" or whatever it is called, but this tiny little thing kinda got my goose.0 -
" I would never want to be in your shoes." Said twice by dumb ass "friend" who also told me "It's just hair. It will grow back."
I don't want to be in my shoes either but I wouldn't trade my shoes for her shoes b/c I couldn't stand being that dumb!
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A big "Amen!" to that, SuperFoob. I have refrained from mentioning it, but I feel a sting every time someone in this forum expresses their gratitude/relief at having "only bone mets," with the more dire prognosis of organ mets being articulated or implied. It's just unthinking carelessness on their part, I know, but somehow it manages to be hurtful, probably because I come to this space with my guard fairly down. Thank you for having the courage to bring it up on this thread.
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My best friend told me that just because I have cancer it's no reason not to wax my upper lip (tx is making it hairier). I am feeling so awful with all the tx, and so ugly anyway, that I really feel like my upper lip is the least of my worries. I told her I'll wait for it to fall out with the rest of my hair in two weeks time...
I also want to apologize if I was one of the people who posted "just bone mets". I think I may have done so on one of my first posts on the forum. It came from a lack of understanding and being in shock and being new to stage four, and I definitely wouldn't do it now (I now have probable lung and liver lesions also). I am truly sorry for being unthinking and careless with my words earlier on.
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Latte, there's no need to apologize, but it's lovely of you to do so. Thank you. We're only human and I'm sure I've "said" some insensistive myself on this forum. Today I was so relieved to see that someone else has also been bothered by the "only bone mets" posts that I had to chime in.
Tina
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Re: "It's just bone mets." I feel the same way when people talk about chemo as if it's the last possible choice, and truly horrible. I've been on Taxol for almost a year now, and I'm doing pretty well.
Do we have a manners guide for newbies? I could have used it, I am sure. Or we could call it a Stage 4 orientation.
As to any celebration of NED, or bone only status, we all know time's winged chariot is lurking. I love Surly's twig analogy - it's very true. I'm sure normals have that sense of mortality, but we have the condensed, intensified version, don't we? I think I've made my peace with my shortened timeline (maybe) - I try to think in geologic terms, and then my loss of 20 or so years looks pretty tiny.
Time to stop navel gazing, and tend to laundry. The actual always trumps the metaphorical, doesn't it?
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I've been on chemos only since 11/09. Before joining these boards I didn't even know that not being on lifetime chemo was an option with stage 4.
And FYI...at the metastatic breast cancer conference last October in one of the breakout sessions a woman asked a question regarding those who have bone mets only..what research is being done to ensure that it remains in bone only and doesn't progress. The medical person looked at her incredulously and without even attempting to sugar coat his answer told her that it is assumed that it is in other areas anyway although undetected or that in time it will be.
And, Tina I am enjoying your Italy trip almost as much as you are. And pics would be nice too...:). Maybe on the other thread.0 -
Blainejennifer,
I certainly am not encouraging insensitivity, but are you implying that celebration of NED is insensitive? I would hope that we can celebrate each others happiness and well as grieve and mourn.
Caryn0 -
I am always happy for someone who only has bone mets, has met NED, or has never had to have chemo, but human nature does leave me a little jealous.
But I'm jealous over the stupidest things in life, so I know I'm just being over sensitive. Good heavens, my daughter keeps snuggling with my husband and I keep thinking she should be snuggling me since I probably won't be here much longer. But logic tells me that I should be completely happy that they have such a great relationship with their father and they will be fine when I'm gone. I spend my days jealous about my DH's new wife and how she will have breasts that he will enjoy and I will never be able to provide that for him again. Stupid emotions.0 -
<<Stupid emotions.>>
Ain't that the truth! No one can tell you how you feel; heck we can't control what WE feel. All we can control is what we do with those feelings. *
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Oh noes, exbrngirl. We should party with the good news. Was it that obvious I was blue?
I know that when I get good news, someone is getting bad news. And then we trade. Taking turns, good to bad.
Yeppers - I'm talking to the MO about some happy pills. Stat.
Grovelling in case I hurt someone's feelings, which I never want to do,
Jennifer
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Jennifer,
Effexor is a winner for me and many of us.
Caryn0 -
First, I am always thrilled to hear someone's NED, Reggie or Stable Boy stories.
Secondly, I know I never post 'only bone mets' phrases, because to me, it's still a ticking time bomb. I have noticed quite a number of women on these boards who began with bone mets and seemed to live only a short time. That's very sobering to me.
I can understand, however, that it would bother some to read that, and you have every right to make that point.
Jill, that is also sobering to think that there is no research into preventing the spread of bone mets to the organs.
This Friday, I scan. Plz keep me in your prayers.
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SPAM -
I'm like you. I'm happy for others when the chips fall their way, I'm just also sad for me that mine haven't. I get jealous too. I don't want others to hurt, or be worse off, or suffer...I just want some of whatever I perceive that they're having that I don't get to have.
I go off into my own little floats on the River Denial, and then whammo, it hits me right in the face. The enormity of it. And it's then that I realize that all the little stuff I notice and obsess over, and bitch about is just a way to distract myself from the enormous elephant in the room, who is having a staring contest with me.
It just sucks all the way around. It's hard to be graceful when you want to stamp your feet, scream, "NO FAIR". And some women have suffered so much, not only with their own Stage IV illness, but with the loss of their sisters and mothers as well before them. I can't write too much more on this, because just thinking of the crosses these ladies bear breaks my heart in two. I could cry all day every day, and it wouldn't be enough to express the deepest sorrow that we all share.
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It's just such an unfair disease.
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Mrs M - you are in my thiughts & prayers for your upcoming scan!
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Yes, a very unfair disease! Jo
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Here's one of my biggest annoyances, and I've been thinking about this one off and on for a while. Last year I was diagnosed with a rare disease that is life limiting, creates problems with day to day living, presents significant challenges with regard to cancer treatment planning, and has led to my inability to continue hormonal therapy, which most probably has been the reason I've had NED status for the last several years. So what do I hear from some people who don't have cancer AND from some of those who are living with cancer? "At least you don't have further cancer progression." Or even "At least you don't have further cancer progression yet." As if the very worst thing in life is always cancer! As if it is not mind boggling that I have dealt with cancer for almost 18 years and for the last year have been dealing with another serious illness as well!
Generally I remain calm and remind myself that people just don't understand that not all grave challenges in life surround cancer and that some people will just grasp at anything to say in an effort to appear supportive. And I remind myself that their remarks do not invalidate my experience, but oh, how I yearn for someone to say, "I am so sorry that you have to deal with not one but two very difficult illnesses." How hard can saying that be?!?
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Brendatrue... it's not hard, and I am so sorry you are having to deal with another illness and that it is affecting your daily life and your CA treatment!! I wish people would stop with the cocked-head "how are you really feeling?" and "let me know if I can ever do anything for you!" and just say, "I am so sorry you are having to deal with this." That's it. Because, that I have a response for.... "thank you." The other questions/comments... you don't want the truth... you can't handle the truth!!
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Leanna, a couple of my friends have their own version of "I'm sorry you have to deal with this" which I also quite like. They say "this really sucks doesn't it"!
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A good friend who lost her partner to BC tired of people asking, "How are yoooooouuuu?" Her reply, which works for that question no matter what the circumstances: "Good enough."
My brother just had major surgery on his neck. He's self-employed and has to pay a lot for his health care. When people say, "Let me know if there's anything I can do for you." He says, "Could you give me $100,000?"
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