Lets do a Sh*t People say to Metastatic BC Patients
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I kid you not, the following comment came from a woman with early stage breast cancer. First, she asked about how my cancer treatment is going. I gave a vague answer, suspecting that she probably wouldn't understand the complexities. Then I asked her about her cancer treatment and its effects; she told me about being on an AI for a while now and how it creates joint pain and other aggravating symptoms. I responded with encouragement and a suggestion or two about coping with joint pain. Then she asked again about my cancer treatment, adding that she really wanted to know. So I explained that I've had to stop hormonal therapy (yeah, the treatment that helped me to maintain NED status for some time), after trying multiple options and experiencing severe complications, including a TIA ("light stroke"), and now have to cope with the challenges of "surveillance only" and more apprehension about my future.To which she responded:
"WOW, you are so lucky not to have to take hormonals anymore. I wish I could stop mine!"
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did your mouth hit the floor? Or did you knock her to the floor?! Yes, the world only revolves around her!
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I updated my Facebook profile pic and amongst all the nice compliments was a "interesting.....nice." WTH does that mean?
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Upon hearing the news of my illness I got the "You know how we feel about you and your husband", "You have a good husband and 3 good kids" and "Oh and you saved so well for retirement", really? I shouldn't forget the "I miss the old you" (You know what, I do too.). I have heard that last one from a bunch of people, I guess they don't like the new me - "the holy crap, I'm going to die of breast cancer" me.
(For the record, my husband still needs to retire someday...and 3 kids going to college, etc. And now wonderful medical bills, yeah!)
I hope they find a cure so I can play golf until I'm 90+, screw them. Even if it's only mini-golf, just sayin'.
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It's only been a couple of months but the "it's so great that you guys are staying positive, it's such a big factor in getting better" are already enough to make my wife and me want to be not so positive, just so people could shut up about it.
Also, a bit unfair, since I probably was one of those people before learning more about the disease, but the passive-aggressive detection questions like "mets? really? right at the beginning like that? how comes she hadn't noticed anything?" are just THE worst.
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Musiclover: "I miss the old you"? Oh, man, I'd be floored too if somebody said that to me! Mouths fly open before brains engage, apparently.
Orpheus: You guys hang in there, I was diagnosed Stage 4 from the start too and everybody wanted to give me the third degree about how my diagnosis happened, insinuating that I had somehow screwed up to end up in this spot. It makes you feel terribly guilty! Eventually people move on to other things (like asking why you aren't done with treatment yet, LOL) If you have more patience than I do, you can educate people about Her2+ cancer and how it doesn't behave nicely, but can progress like wildfire.
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Fitz challenged to make a video with some of these and I did.... reposting, since I think it is a ways back on this thread....
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lately (besides all those wonderful comments in English major's video), when people ask how I am doing, and I just say that I am tired- I get the response "yeah, I'm tired too." Really...really?
Also, people ask when am I going to be done with chemo. When I tell them basically never, I'm the one that has to cheer them up! Sheesh.
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CarlaK: Not sure if you have seen this before, but this cartoon is by far the best explainer I have ever seen on the subject. Beautiful and moving, too.
I am attaching it to a lot of my all my outgoing emails to people asking questions and "how is she? is she going to be better soon?"
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Exactly right, mompsych! I have no family history of it, but I now appear to be developing chemo and steroid induced diabetes. Oh joy! When I told a friend this, she replied - "well, you're not going to like what I have to say, but cancer cells feed on sugar". Really? You're going to lecture me from some trash magazine article? MD Anderson and Mayo Clinic refute this. No research has found this to be true. Of course I'm going to be watching my sugar very closely, but not because I'm feeding my cancer with it. And when I've told people 'I'm so tired' when they've asked how I'm doing, I've also gotten the " Everyone's tired" response.
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Don't you just love those time-honored, knee-jerk responses?
"I'm tired" usually brings forth "So am I. Everyone's tired."
" It's terminal" inevitably leads to "We're all terminal."
The underlying "Shut up and suck it up message" of these unfeeling responses leads to the next encounter being: "How are you?" "Fine. And you?" The chance for real communication with that particular person flies out the window, never to return.
Tina
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@to some family in person for the first time. A few days later she called to see how I was doing. Toward the end of our conversation she suggested that I not use the word "terminal" when I described my condition because "it can be so alarming to some people and they assume it means that my death is immanent."
I was speechless. To this day I don't know what I wish I had said. I remember standing there with my mouth open, thinking "That's the point, damnit! It is alarming and my death is certainly more immanent than it should be!!" I just reminded myself that she adores me and is almost 80.
What might I have said to help her understand?
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@Vadre, I understand your Aunt. Terminal is immanent, but people that are not use to the way cancer works and that you could be alive 20 years from now they view terminal as less then 6 months to live. I had this discussion with my sister also. I told her I met someone with breast cancer that was terminal for 10 years and she acted like she didn't believe me and the women is doing fine and cancer is stable. She thought you suppose to pass right away.
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Akevia, I understand that Terminal has the feeling of urgency, of death happening soon. In the conversations my Aunt was commenting on people had been talking to me about cure, about what great meds there were out there and that I shouldn't give up hope. I used the word advisedly in an effort to help them understand that there is no cure for Stage IV Metastatic Breast Cancer. Ie it's terminal. I know that is a tough word to use, believe me. I just needed them to understand!
Akevia, are you Stage IV?
Virginia
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I prefer the word...incurable. Then it gives them an idea that I won't 'get better' , and occasionally, depending who I am talking to we will talk about the fact I will be on treatment for the rest of my life. Just my preference, I don't identify myself as terminal. In that... can't be me...I'm still living kind of way.
Diane
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Incurable is a good word. I think I would use it along with unpredictable. People in general are often still under the impression that if you are diagnosed with stage one cancer, you caught it early and can 'kill it off' so it doesn't spread to stage iv. Many are also under the impression that breast cancer follows a pattern, going from stage one to stage two then stage three before you get to the fourth, incurable stage. They don't realize you can be diagnosed stage one and suddenly jump to stage iv. Some people think if you're diagnosed stage iv from the start you did something wrong, like you 'didn't catch it early enough." So many misconceptions.
So if I were to try to explain it to someone, I might say it is an incurable and unpredictable disease. The condition might be stable for awhile but you can never tell when it will rear its ugly head and become more invasive.
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Vadre I understand, and no I'm not stage IV , I'm stage 3.
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My father called and told me that my cancer is causing my mom's anxiety (which is causing her to fall, break her leg, end up in the hospital, to the nursing home...lather, rinse repeat). I was told not to talk about it. I am sure it has nothing to do with my sister also passing from stage iv lymphoma and my mom falling two days after the one year anniversary of my sister's passing. Yep...my fault. I not only chose breast cancer but chose stage iv too. I'm only 43 and my sister was 46 when she passed. You can't pick your family...fortunately I have some very wonderful, supportive friends.
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sheesh Anna! How selfish of you to do that! Glad you have good friends :-)
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Anna,
Shame on you! We just can't pick our biological family. Thank goodness we can choose our emotional one.
*susan*
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The most recent remark that made me stop in my tracks was said by my older sister. When I thanked her for calling, saying that I had been having an anxious day as I wait for the next scan results and it was nice to know someone was thinking of me - she commented " well at least we now know your human". So this human will continue to deal with this disease with all this wonderful support.
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to the divine ms. M - well said!!
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I could fill a book with things my perpetually positive boss says and does that irritate me, but I'll start with this one. It didn't really upset me and it actually made me chuckle but I couldn't pass up the chance to say something since most of the time I bite my tongue. Keep in mind here that I had explained to her twice, up to this point, what mets means and is. She had been texting me all afternoon asking about my dr appointment to get my scan results that led to my stage IV diagnosis. I kept telling her that I had been waiting and waiting and would call her when I got out. Then there was this
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My step daughters mother put this as her status on FB:
"Ky's step mom has bone cancer now and I need all the prayers I can get! It's been a rough couple days!"
Seriously?
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wow kite. Wtf? No words.
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Wow, Kite! Just Wow!
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No surprise that your DH divorced her, Kite.
Leah
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Quite horrible thing to say to you, Kite, but then again, so very typical of the me-me-me attitude of a lot of people. Kind of like when close family goes off: "you guys never give any news" "can you guys try to call us to let us know, we worry a lot". Well, we've kinda been busy, you know. THIS IS NOT ABOUT YOU (or me for that matter) BUT ABOUT HER.
Something else I had not noticed at first, but which drives my wife totally crazy: when people start reflecting on what *they* would do in that spot. "oh, you're still working? I really couldn't. I would want to be with my loved ones all the time".
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The worse was when I was in for a chemo talk. I was extremely upset knowing that I would have a port for the rest of my life and be on some sort of treatment for the duration. DH might have been trying to make me feel better when he said "it's not all about you" I let him know that when I am at the doctors it is ALL ABOUT ME. Who else is it about? I'm still pissed
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Said by a co-worker "I know exactly how you feel, I have a colonoscopy next week" What?
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