Lets do a Sh*t People say to Metastatic BC Patients
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I read this thread regularly and with increasing wonder. Surprisingly enough, it's been so-far, so-good for me in terms of people saying truly stupid things. I get the garden variety, sweet but tiresome "You look GREAT" (as if they think I should look cadaverous) and "When will you finish treatment?" from close friends and family members whom I have told multiple times that I will never finish treatment, but that's about it.
Of course, I've told very few people about my Stage IV status, so that helps reduce the possible offenses!
Tina
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Lisa, that has to be my biggest pet peeve...people who have no idea what they're talking about trying to act like experts when it comes to bc. I'd have to say the majority of people have no idea what hormone positive, or triple negative or her2 positive means, along with understanding different grades and stages of the disease, or invasive lobular carcinoma, ect. I had no idea myself until I had to get a fast education on it...but I don't think I ever tried to act like I knew all about it before.
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Or the fact that mets to other places are still whatever you primary cancer was, in our case bc. I've had people argue with me that I have bone cancer and they just refuse to understand that it's bc even if it's gone to the bones.
Caryn0 -
At the hairdresses today (btw noone complimented on my new hair yet, I get it, it's not better than the last
), while chatting whether I should bleach further (me describing chemo etc) or not, grow longer or not:Me: Does this platinum look on longer hair, too? I'm on chemo right now, but no hair loss for now.
HD: (forgetting he's supposed to take of my hair only) where is it?
Me: Breast cancer. (WTF!!! trying to turn back to the topic) maybe even grow long enough to make a wig out of it for later?
HD: Why not. (Thank GOD he didn't ask which one!) Needs more looking after, but we can do it. (OK, here's the magic question) When will the chemo be over anyway?
Me: Don't know, but it's OK, lots of alternatives & stuff (trying not to get too personal, but it's too late already)
HD: Yes & there are worse stages of it I know. (AND the magic phrase of course) You look well, you will be cured soon.
Me: Actually I am stage 4.
HD: (Sad, but trying to collect himself) We are almost finished. Will wait to have the color set in for a while. Btw I am sure you'll never want to grow your hair, after the final look, this color works best with short hair. It will be so gorgeous.
After washing & drying & complimenting on my final look, of course he also briefly told me about his uncle with stage 4 lung cancer, who lived for 8 years, but fell down the balcony one day & died.
Guess this is what they call "all -in- one" promotion. I got cancer promoted today!
Ebru
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Ebru, your new hair looks great!!! You are gorgeous, and would be lovely with any color, but I really do like it!
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I did mean to compliment your hair in an earlier post but forgot. Looks great!
Caryn0 -
Ebru, your hair is smashing. Annie Lennox is eating her heart out. (Uh-oh, am I dating myself?)
Tina
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Yes Tina you are, but that's ok. Knowing who Annie Lennox is should be a requirement for all strong women. She's has an amazing voice.
And, yes Ebru, I noticed your hair too but didn't want to say anything in that thread. Looks stunning.
I did that to my hair a couple of years ago(against the advice of my hairdresser) and the whole fringe snapped off, up to my forehead. She did tell me it was too much for my darker hair to cope with. Some of us have to learn the hard way.
I think yours looks much nicer and looks good short too.
Moira
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Yes, one of my other favorites is... my friend was diagnosed... yes, she has the exact same diagnosis as yours... and then you ask what stage their friend is, and they have NO idea!!! They told me that about a lady at work, and when we finally met, I found out she was Stage IV from the start (when I was Stage 3).
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And, Ebru... LOVE your hair! You look FAB!!!!
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Thanks ladies, sort of forced you for the compliment, but you know stage 4 makes us do many things. DH said I "achieved" the Roxette look. That got me thinking about his fantasies as a teenager
. He's been more than a rock, like the moon for me so far, I could even be one-boobed Princess Leia if he wanted from this point on!Fitz, not meaning to hijack your thread, so here's another quote fresh from today.
The officer to report for the finalization of my disability retirement after hearing my story:
Him: Your business requires brain work only, why do want to stop working?
Me: Well I just called my dad a few minutes ago and to hang up after saying hi, because I forgot why I called him. Imagine I do the same to a client? And happily popped my handfull of morning pills as he filled out the form..
hugs, Ebru
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first meeting with our chemo consultant:
me: we now have cut all dairy products from her diet doc, because of the igfs.
doc: u shouldnt have bothered, it aint gonna make a difference to ur prognosis.
me: u piece of shite. (didnt say it. just thought it. mind u, u didnt have to be a mind reader to figure out what i was thinking.)
got many more...
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Good lord, this doc clearly skipped any courses on bedside manner or sensitivity training!
Caryn0 -
The people I work with only know I was diagnosed with bc two years ago, but not about the stage iv. They freely act like bc experts around me.
One teacher's son dated a woman, "CiCi" for many years. Then CiCi wanted to take a break from the relationship and eventually they went their separate ways, each marrying someone else and starting a family. Ten years later, CiCi has just been diagnosed with bc. The teacher, absorbing the news, said, 'Well, there must have been a reason why CiCi and my son didn't end up married to each other." What? The reason being that if they had, your son's 'wife' would now be diagnosied with breast cancer? So he dodged a bullet with that one? I mean, really, that was how I took her statement.
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i begin to think that when they say 'caught it early' it just means before you're dead.
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my mother has a classic-'we're all very sad.' mind you, she's a DOCTOR. now, admittedly, we are 'estranged,' but i think you can see why.
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(This may be a common one that i haven't found in here, but... these are the ones I really can't stand... just boring and a waste of time)
Nurse comes to my home. Tells me for 10 minutes about a nurse she knew who had breast cancer. How horrible it was. "She turned to say goodbye to someone and her hip popped and broke just like that" "It was 18 months, oh no, maybe 22 months, hmmm , I can't remember let me think... and then it started coming out of her breast and she had drainage but she still had to work. Bless her heart she kept working right after her second hip surgery. Her pain was horrible" "Oh and I know another woman..." I feel like saying, hey we are getting older here, lets move on.
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In India they just drink their pee and it cures cancer.
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Lol....that's a really good one! Got to remember that.
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Here's a good one. I know that people are just trying to be positive, but sometimes it would just be better if they did not say anything. I do not talk to most people about my treatment anymore. I live in a small town, so most people know I have cancer. Since I have some hair now and wear make up once again, many people assume I am doing just great. I usually just smile and say thanks.
I should have just smiled the other day when someone pushed me for more info than I was giving them. I had just met with my onc to decide on stopping treatment or giving Xeloda a chance (nothing else has worked to stop lung mets progression), so I guess I may have needed to talk to someone. I did not tell the person X was my last resort - I just told them that I would be taking twice daily chemo at home, two wks. on and one wk. off. The person immediately hugged me and said, "That's great, you must be doing well if they let you do home-chemo".....yea, it's great...At that point I did just smile and nod my head. At least the person felt good about it.
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Sometimes you get, "THATS GREAT!" when youve told them bad news. I wonder if i chose the wrong words or what.
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I'm cured. According to my family anyway. Scans last week showed NED. YAY!
But now, I'm cured, it's all gone, I'll live to be 100 and why am I still worried. I've got the "See! I told you, you just have to be positive!", "See! I told you that I would pray and G-d cured you!", "Finish the radiation and you'll be all done with this cancer stuff!". "When are you getting the port removed? Why would you want to keep it now that you are cured?"I think I'll just leave them in their ignorance. It's a much happier place to be.
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Stormy - I think we must have the same family. It is so irritating! Especially trying to explain why I am still getting infusions every three weeks.
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Stormy and Scuttlers - how hurtful this is. I have a friend who keeps insisting that I will be cured. It makes me mad. I keep telling her, "No, I won't. This will eventually kill me." She refuses to accept that. Maybe it makes me mad because she gets the luxury of living in la la land, and I don't. I think I'm jealous!
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Reality, your post explains the weird look on the Doc I met yesterday at a family gathering. We were chatting & smiling until she heard I was on Xeloda. She probably thought it was my last resort..
Stormy, you are luckier than most of us, thank G-D, you are at least NED with these people around acting so ?%&/( ! My current TM's are 900s & mom who is in this bc-business herself (just completed her 10-years in remission
) says it will be over soon. She has some right, though, one way or other it will be over for me, yeah! Hope not that soon. Ebru
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LizLemon- I agree! I had a family member tell me I was being negative because I explained that I would not be cured.
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My older dd can be like that sometimes, especially when she hears me talk death or dying issues. She thinks I'm being negative. I want my death to be on my own termsso I need to plan now, while I'm well. If a cure is found, I will happily abandon those plans!
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My mother was visiting last week. I asked her to limit her talking of cancer in front of the kids. It really just bums my little dude out. So she stomps off to her room and starts crying because she's not allowed to say anything. She live 3 hours away and we see them for 2-3 days every 3 months or so. I send weekly updates with liver enzyme numbers, etc. by NO means am a part of her day-to-day life.
I tell her she probably should go to counseling and she tells me she is just fine and there is nothing a therapist could do for her. Three sentences later she tells me she wishes she would die before me so she wouldn't have to deal with my death. And I'm the one who needs counseling....0 -
She is certainly helpful, SpamGirl. Poor you.
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Before Stage IV, I kept a lot hidden from my adult children concerning progression. Each of my children is dealing with my disease in a different way, so I try my best to be sensitive to the processes each of them are going through - but I feel that now is the time for me to be more honest. Whenever one of them talks about "years from now", and includes me in their discussion, my heart just aches for them. I can be the most honest with my oldest son who lives ten minutes from me. I care for his children every day after school, so he has to know more than my other children in order to plan ahead.
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