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I know people mean well . . .

puppers
puppers Member Posts: 12

So I know people mean well when they approach me and ask me how I'm doing. I have had people say everything from "hopefully this will all be gone soon and your treatments will be over and you can put this behind you". I've also been told "early detection is the best thing" - maybe, well my initial cancer was detected early and still came back 12 years later. I've also had people tell me, "oh my, how awful that your breast cancer came back! You beat it before, you'll beat it again". I almost don't want to be around anyone anymore, as no one seems to understand that mbc is a lifelong issue for me now. This will always be with me. I'm just praying I can give people grace to just nod my head, smile, and go on with my life. But right now I'm sad and tired and I know you ladies will understand.

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Comments

  • spookiesmom
    spookiesmom Member Posts: 8,167

    When I get those questions I just say I'm hanging in there, then change the subject. I really am, and don't want to talk about it all the time. They don't need the details.

  • illimae
    illimae Member Posts: 5,569

    Some will still tell you “you can beat this” (ugh, eye roll). It’s because they mean well, that I politely tell them “yeah, not really though but I get what you mean, thanks”. It sucks, no question, hopefully you find balance between toxic positivity and living like you’re dying. There’s a pretty normal and peaceful place right in the middle, I wish you excellent response and luck.

  • aprilgirl1
    aprilgirl1 Member Posts: 754

    Puppers, great advice from Spookiesmom and Illimae. We do understand and to be honest, I have great support with close friends and family but chose not to tell colleagues when I was dx stage 4 11 years after stage 1. One of my work friends knows I had a recurrence and it was considered to be advanced stage but I am currently NED and doing fine. We work with a 50 year old woman that has a heart condition and my friend told me "OMG I heard she only has 15 years left to live".....ummm clearly, my friend doesn't understand my situation!

    LIke Spookiesmom said, tell them you are hanging in there and change the topic. Like Illimae said, you will find the middle ground. When I was first dx stage IV it took me awhile to get my balance. I did get there and feel pretty good.

  • gailmary
    gailmary Member Posts: 426

    peppers I struggle with that too but also with the casual 'hi, how ya doing?'

    I wish they wouldn't, it's a common polite greeting, but no one really is asking. So I have a bunch of answers prepared and practice them often before expecting to meet someone.for example

    Still kicking

    Still here

    Good enough

    OKay for now

    Cold today, how but you?

    All said with a smile and an inward groan. I could easily tell any and everyone every detail, TMI. I'm trying to keep it to a select few. People don't really want to hear, nor do they understand. Someday it may change and I'll say: Pray for me. Sometimes I surprise myself with: I'm great... yep, I'm a mixed bag of emotions right now. Lots of other crap going on. , but my scans showed all stable. Yay. Almost 5 yrs.

    Good luck

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I suppose "Not dead yet" wouldn't qualify as an approved response?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726

    Being essentially de novo stage IV I did avoid having to explain a recurrence but there is still not a great understanding of metastatic disease out there. I have been completely open with everyone about my mbc because as a teacher, now retired, educating is what I do. I agree that people do mean well and after dealing with mbc for 10 years, most comments roll off my back. I do continue to try to educate but it’s futile to expect people to not ask about my health and I remember that it wasn’t so long ago that I knew little about bc or cancer in general and quite possibly made lame comments too.

  • aprilgirl1
    aprilgirl1 Member Posts: 754

    SP - that would work! SF-Cakes on the Ibrance thread had a t-shirt printed with that slogan.

    ExBronxgrl, it is complicated and most don't understand MBC or most cancers. I had no idea before I was dx that there are so many types of breast cancer (er/pr/her2) etc.

    Puppers, this is along the line of GailMary's answer. I have a friend who lost a teen through suicide and she taught me a nice way to greet people that isn't "asking" for an answer. She preferred "Good to see you!" vs "How are you?". To her it was a nice greeting without people "asking" how she is doing. She understood that most people mean well and honestly don't expect a long answer but it made her feel awkward. If she lead with a "good to see you" they would say that back to her and it would eliminate her feeling like a "deer in headlights".

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726

    April girl,

    I laugh now when I think back ten years and realize that I knew virtually nothing about bc. The fact that it is so complicated was astounding to me. I was clueless, totally clueless. After all this time I have learned much but it is still crazily complicated.

  • sf-cakes
    sf-cakes Member Posts: 522

    Puppers, thank you for posting this, this issue can be really challenging at times. Before cancer, when someone asked how I was, I used to say, "I am well!" Now of course that's no longer true and feels like a lie coming out of my mouth, so I've changed it to, "I am okay, how are YOU?" Heavy emphasis on the YOU.

    I've been open about my diagnosis with my work team, but I don't talk about it very much and many folks just don't understand it. I've gotten, "when will you be done with treatment?" and "when can you stop the scans, that's a lot of radiation" and "when are you going to let your hair grow long again?" and so on. I've had good friends ask about my scan results and then be unable to process the fact that the scan revealed something new. I talk less and less about it overall, since people's expectation is that I will be done with treatment and in remission any time now! That was certainly MY expectation. I'm very cautious about who I share things with now, and generally turn the focus around to the other person. It's hard enough for me to get my head around the fact that I'm not going to get better, I don't want to have to keep explaining that to everyone else! I don't want to be seen as just The Cancer Lady, also.

    And I do have a t-shirt now that says #MBC, #notdeadyet on the front. I wear it when I'm feeling fiesty. Sending you lots of love and support.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726

    #notdeadyet I love it! That is what I say to people I know have a sense of humor if they ask about my health. Those who don’t have a sense of humor were horrified if I said“Not dead yet”, and chided me for making light of something so serious. Really? I’m the one with mbc and if I want to indulge in some cancer humor, I most certainly will. Laughter is a great stress reliever 😊 .

  • puppers
    puppers Member Posts: 12

    Y'all are awesome! You have put into words all my confused thoughts and feelings and given me direction . . . thank you!!! :)

  • divinemrsm
    divinemrsm Member Posts: 5,995

    april, thanks for the insight on how to greet someone who’s going through difficulties. I will be saying “nice to see you!” from now on.

    Puppers, my answer to the “how are you doing?” people with that sad look on their face is to say, “I’m doing reasonably okay. Thank you for asking.” With most people, I don’t go in to any detail about treatment or scans.

    I’ve been working on personal boundaries for awhile now. At one point I had to come right out and tell a couple sisters they were causing me anxiety by always bringing the subject up and acting like I was on death’s door. They backed off and I spend less time with them.

    People do like to have things wrapped up in a pretty bow. It gets annoying. They seem to think if we only think positive, we will cure ourselves. Such faulty thinking.

  • divinemrsm
    divinemrsm Member Posts: 5,995

    One more observation: some people only want to hear good things, period. Several years ago, a woman I know who lives in town suddenly suffered a brain aneurysm at age 48. She survived but was hospitalized for months, had numerous set-backs, now resides in a nursing home needing round the clock care. She'd been an attractive, active, well-known, well-loved, well-liked fun person to be around and her life was instantly changed forever. I was quite upset about it.

    My sister was acquainted with the woman so I initially told her the story and we were both sad. After several months, I sent my sister a PM updating her on the woman's condition, that it had deteriorated and she was having more surgery, ect. My sister sent back a reply that said, "Oh, I thought you were writing to tell me she was doing better and was getting out of the hospital!" My sister was completely out of touch with how serious and irreversible the situation was. She was also oblivious to how badly I was feeling about it. She only wants "perky!" "happy!" endings for everyone.

    I don't live in doom and gloom, but I also don't live in denial. I find reality to be an okay place to reside.


  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502

    The biggest and most frequently said thing said to me outside of "How are you feeling?" if they know I have MBC or hear I have MBC for the first time is "You look so good tho!" - to which I reply - "It's bronzer, trust me" with a smile. Inside I'm thinking I didn't realize MBC had a 'look'. I mostly say "Hanging in there" to inquiries and don't elaborate outside these forums much unless I am particularly vulnerable ie: in scanxiety mode when I will spill more which is a mistake because that's when I get "You'll be better in no time, you have a long life ahead of you". Heck I've gotten people asking me when me and my beloved are going to try to have kids even tho I'm sans ovaries now. They think MBC is like early stage - do the treatments and viola, in a few months it'll all be over. Nope, nope. Not how it works.

    There is something deceptive and a bit sinister with the rah rah stuff when it comes to early stage vs now. Because in early stage your tempted to get swept away in it "I'll be fine, just do what they say I'll be fine" So when you wind up here/people see you wind up here which is counterintuitive to the message "You'll beat this and "You have this" everyone assumes "She didn't do the right treatments or she didn't do what the doctor said" "She's reading too much into this, its just a temporary reality". They have no clue what the DX means. Admittedly prior to all this neither would I. The messaging is if something crops up later its assumed it'll just be like early stage - a little life changing inconvenience and then boom - all done. Nope, nope, not how it works. MBC is for life - meaning extending life. Having to be the educator all the time is tough so the art of smiling and nodding is my best defense as well as "Will you excuse me please I need to use the restroom" to get out of the 20 questions. People must think I have the weakest bladder on the planet.

    Truth is Puppers, your going to get hit with some completely gobsmacking questions and statements. Everything from "Don't be such a pessimist!" to "How much longer do you have to live?! Are you dying?! OMG!". (True story: I went up to this same person when at the same function not too long after the latter statement and held out my hand saying "Hi there again, Stage 4 patient who's dying, nice to see you again!" - just to see the look on her face - a reverse deer in headlights flip) - Don't be afraid to be sassy when appropriate it helps people learn to keep their woven uninformed uninvited tapestry of opinions to themselves.

    I think we with MBC need to train and educate the masses. Yeah, we have a terminal illness, BUT like its rightly pointed out we are #notdeadyet. I think about my mortality all the time but I don't need to be constantly reminded about it by people who don't understand. Some people honestly do try to put their best foot forward and think they are doing you a service to keep your spirits up but they just go the wrong route and its built upon a strawman of what the actual situation is.

    Welcome to the forum Puppers :)

    Really good advise on this thread ladies :)

    Edited to add: Things are still fresh so give yourself some time. You will reach that midspace between the two extremes as others have stated. After you've had a chance to let things settled an odd kind of 'acceptance' will take hold and that will give you the hutzpah to better cope with the dx and people. I told my MO once some of the things people say and she replied with "Who are these people?" - I said "I don't know, but I had to get cancer to meet them!".

  • moth
    moth Member Posts: 3,293

    "I'm not dead yet but I'm still dying, just slowly. There is no cure for my cancer. Treatment sucks but it's what's keeping me alive for now. How about you - how are you doing?"

    They won't understand if we don't explain it. People don't know and in my opinion need to know. How can we expect people to donate to stage 4 causes when they don't know what that even means & eveyone is cagey because it's a downer. I get that we don't want to talk about it all the time but I'd rather get it out & over with than just be constantly minimizing it. It IS a downer.

    We can be laughing about something else a few minutes later but let's stop to acknowedge the absolute awfulness of this disease.

    I am living like I'm dying because it's true. Just, hopefully, not today. My life expectancy has had about 35 yrs whacked off it and I'm not going to pretend otherwise.

    For people who already know the stage 4 stuff, I assume they're asking about how I'm doing with this cycle or what my latest scans said so I give them that information. (Or just refer them to my blog as that's the whole point of it. Drives me nuts when a relative of ours calls and asks things that I had posted about. I'm like, "if you haven't done your pre-reading, you don't get to ask questions in class" lol)

  • gailmary
    gailmary Member Posts: 426

    great answers everyone. Yes, much of my talking is educational. Can't believe how naive people are about this. Don't complain to me about getting an annual mammo. Yet, like Divine keeping more details to myself including my sisters. They don't need to know I'm stressing about latest SE. There is enough depressing crap going on in the world. Maybe this is why my good friend diagnosed stage 4 a month after me wouldn't talk to me the last few months before she died. Not that I wouldn't understand, but to protect me.

  • terri-c
    terri-c Member Posts: 65

    There is a game I play through facebook, for the last 5 years or so, and some in that game have decided I'm lying about having bc because I haven't died yet.

    People are weird.

    When asked how I'm doing by people who don't really want to know (and I've found that most don't REALLY want to know) I just say I'm hanging tough and smile.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Rabbit and Moth, such good points. I have become more open about my mbc diagnosis but I get nervous that people will run away. (I know if they run they were not true friends but still.) The other thing I have been thinking about is how to honestly tell friends or family what is going on but not be a downer that people avoid. Because I have a relative who experienced a major loss a few years ago, and every time they interact with people they remind everyone of their loss and inject the sadness into the conversation. I find I do not enjoy interacting with this person. I don't want to phone. They are lonely but they are shooting themselves in the foot by not trying to move forward. We all understand the importance of being able to share our feelings and our situation, and the need for education, but I think there is something to be said for trying to spare others constant grief. So what I tell myself is to share, but then to allow for normal cheerful times as much as possible. I don't want to drive people away. Does this make sense? It is not even a fully formed thought or policy but something I am thinking about. As you say, Divine, not doom and gloom but not denial. I mean there is some real doom and gloom, but I would like to not constantly dwell there or ask my friends and family to dwell there.

    Terri, that is so messed up that people say you are lying!

    Gailmary, I am sorry your friend closed off those last few months. The impulse to protect people we love is common. What people need to understand is that intimacy is damaged. DH and talked about this with our cancer center's social workers. When we just told each other our fears and sadnesses, it brought us closer and made us more of a team.

  • kris_2000
    kris_2000 Member Posts: 93

    I love this thread. Thank you for posting. It has given me some validation for my own experience and feelings as well as some great laughs on some comments/suggestions.

    I try to keep in perspective that if someone told me they had MS, ALS, or any number of other illnesses, I wouldn't have a clue. With that said, the lack of understanding does make it difficult. For those closest to me I started a CaringBridge page to share updates to keep everyone informed without getting the constant questions. I also used this forum to educate those closest to me so I wouldn't continue to get the uninformed comments.

    Also, I am not religious, so when someone says "I'll pray for you", it makes me feel a bit awkward. I just say thank you and move on. I know their intentions are good. Plus, as a friend told me she thinks...if they have a direct line to someone that might help me, more power to them.

    I'll have to share some of these suggestions with my daughter. She's only 20 and gets upset about people doing these same things to her when they ask about me. Thanks for the ideas!


  • nola70115
    nola70115 Member Posts: 61

    People like to believe that cancer can be “beat” with sheer will and a good disposition. That allows them to believe that people only die if they did something wrong, and that would never happen to themselves. The fact that terminal disease can be random and unstoppable makes those people very uncomfortable.

  • kris_2000
    kris_2000 Member Posts: 93

    I agree. I did have a co-worker admit this to me in a way. She asked about how my cancer was diagnosed and if I had mammograms, etc. I answered all her questions knowing she wasn't trying to blame me. She eventually said, "It's very scary. I'd prefer to think that as long as I do everything I'm supposed to this won't also happen to me but that's just not the case."

  • kbl
    kbl Member Posts: 2,675

    I have a sweet SIL who calls me either daily or every other day. I appreciate her so much, but she always wants to hear that I feel good. If I tell her I’m not having a good day, she usually shoots back “But you sound so good.”

    I also have a CaringBridge site and started it immediately after I found out. I did not want to tell lots of people the same thing over and over again.


  • bmpntherd
    bmpntherd Member Posts: 24

    I forgive almost everyone but hate it when my infusion nurses talk like my port will come out! UGH!!

  • kris_2000
    kris_2000 Member Posts: 93

    Bmpntherd,

    Of all nurses I'd think the infusion nurses would know better.

    At the cancer center I go to, they have a bell for patients to ring when they are all done with treatment and not coming back. I have not had a nurse slip up and tell me someday I'll be there but I do feel sad and angry (for me) when I hear it.

  • kbl
    kbl Member Posts: 2,675

    Bumpntherd, I’m sorry they did that. Hugs

  • nkb
    nkb Member Posts: 1,561

    I used to wonder if anyone who said how are you really wanted to know. I decided they probably just wanted to greet me or hear me say good. recently I told a friend I had a sad day, and she said I have some of those too- and that was enough-

  • kris_2000
    kris_2000 Member Posts: 93

    I agree, that can be enough. People don't have to know what we're going through, just acknowledge our feelings and don't negate them.

  • vlnrph
    vlnrph Member Posts: 487

    Depending on how I’m feeling or, with someone who really should know better than to ask “when will your treatment be over?”, I have been known to reply ‘once I go on hospice’. It’s a bit of a shock to many and my husband doesn’t like for me to say that but it is certainly the truth!

    Actually enjoying COVID isolation for taking me away from those idle questioners and although retired, I don’t attend our local support group either. Too many early stage people there who refuse to wear a mask indoors which indicates they couldn’t care less about my susceptibility to infection.

    Even if I explain that treatment has resulted in anemia and tanked my WBC count, the lack of understanding is quite remarkable. Assuming I have an iron deficiency, one lady told me to eat liver. Yuck. Due to my former career as a pharmacist, education and health literacy continue to be goals…

  • kris_2000
    kris_2000 Member Posts: 93

    vlnrph, I personally like your answer to the question. I think "when I'm dead" is even more direct and shocking because I think some people don't understand hospice either.

  • woodlands
    woodlands Member Posts: 72

    I like to tell people that there is no cure. I tell them I am doing pretty good, have to take a nap every afternoon, and have no pain so far. I explain that I love living in my dream house in the woods east of Seattle. Sometimes I tell them that I was diagnosed three months after I retired. Sometimes I tell them that so far my six bone mets are inactive and there are no tumors in my organs. But usually I just say that I have stage 4 cancer and there is no cure. That keeps them from telling me I can beat this. However, if they are religious, they believe that God is the only one who knows if I can get well.They are sure that I can get well.