Lets do a Sh*t People say to Metastatic BC Patients
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I was at the Vet's, and one of the Techs asked me how I was:
Me: Oh, just doing the Stage 4 cancer thing (pointing at shiny head).
Her: That's the terminal one, right?
Me: Hey, how's my dog?
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Oh Blaine such finesse LOL--I hate the word ter-
rminal--anyway I always think of the bus Depot or train place so I choose that line of thinking.
I just read Cindi's post and she's in hospice and I don't know what to write to her and I want to-she stopped all chemo-I know u'll all see it and most of u have the right words and thoughts--as u know by now I don't I fumble thru seriousness horribly so I probably won't reply to her post and I feel bad cuz I want to.
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Seamstress,
Not everyone believes in G-d!
Caryn0 -
My dad seems to have lost all filters lately. When I was diagnosed he said "your kids aren't supposed to die before you". Thanks, Dad...didn't know I was dying. On a recent vacation to the beach he told me that with my short hair (20 wks PFC) I look like a dyke!
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Oh Kellpggs I'm sorry if it made u feel bad---but it is true we do loose our filters and I'm sure he is sad inside, just doesn;t know how to espress it.
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I know....it's been a particularly bad year. We lost my mom suddenly on May 8th. I know he has trouble expressing how he feels, just wish he could find a less mean way of doing it. But I take it with a grain of salt knowing what he's been through too.
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Actually, I thought we would have some really funny responses, but some of them are really sad...
Still plan on a video. Writing down the best gems
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Today I had an MRI and the nurse asked me about what treatment I had had over the past 5 years. After I finished my list she said, "wow! That's a lot of chemo! Are you sure you needed all that?"
Seriously? I felt like saying,"no, I needed most of it but the rest was just for kicks."0 -
My SIL, after being informed about my stage 4 BC details, called me to announce that "we are ready for the battle. She went on with things like what a strong woman I am. Together we will beat this.. " Concluded the conversation saying to pump up energy for this fight, she was going to some concert that night!
I have support around, and appreciate it very much, but hate the we word in front of everything I am going through, alone.0 -
Many of the comments posted above ring a bell - you just need to think positive advice and- you never know, you could get hit by a bus tomorrow.
I have a part-time job at a local store. I just finished chemo in May and my hair is still growing back. Once it covered my head I stopped using scarves (hot flashes). It's still pretty short. Anyway, one day a little boy said to me at check out counter - I thought when I came in you were a boy. I explained to him, no, that I had just had some medicine that caused my hair to fall out, but I was better and it was growing back now. I'm sure his parents were flabergasted.
Also - you don't look sick - mostly because I haven't lost any weight.
I think most hurtful was a man who called me ugly as I walked by him in the grocery store. I was still in chemo and had on a scarf - strechy shorts and an old t-shirt - it was 10pm. Not my best look - but some people have no filter.
And my self-absorbed 18 year old daughter - if you're sick you should be in bed. You're up and on the computer - I don't see why you can't make dinner. Brat!
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Reader: I had the same kind of thing happen to me when I was bald.
I was in line at RiteAid. A man and his little girl (6 years old maybe) were behind me.
The little girl says, "daddy, is she a girl?"
Her dad was mortified and clearly embarrassed. I turned around and said, " yes, I just don't have pretty hair like you".
I didn't want to scare her and make her think all medicine makes your hair fall out! Could you imagine the next time her dad would try to give her cold medicine? Hee!
Well, she said, "oh. Ok".
Her dad was obviously relieved that I wasn't mad and was nice to his little girl.
She totally accepted my response and moved on. If only adults could do the same.0 -
How about,
"To understand Stage IV cancer, you have to understand all breast cancer. We're all in it together, ladies. Stage I and Stage IV, it's all the same."
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CoolBreeze, ugh!!! aauugghh!!!
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I want to scream too.
I joined a place that was ONLY for Stage IV, a facebook group, but they didn't want newbies, so I left.
There is no place to go where we can talk about our concerns without being spied on or invaded. Sorry.
It makes me feel really lonely. 0 -
CB: Do you have access to a Patient Advocate through your hospital? I was never very keen on the idea of needing "support" and definitely against a support group (not my cup o' tea). However, finding that I had noone to unload my fears on, they began to pile up in my brain and overtake even the smallest joys in my life. I needed someone to talk to...just to talk and have what I am saying/feeling be accepted.
So...one day, my MO said, "Have you talked to Holly?" She is the patient advocate at my hospital. Her services are free and she has helped me tremendously. She never downgrades my fears or tries to associate them with what others are feeling, assists with practical day-to-day issues (such as financial assistance, health insurance questions, end-of-life, living, etc...). She allows me to "own" my disease, accept it as part of my new reality and never does she attempt to "explain away" my fears or pains, something many of us here are searching for, it seems. The best part...she listens.
I can see her whenever I want. She even shows up at my MO or port flush appointments...just to say, "hi" and see how I am doing. Not pushy nor any pyscho-analytical bulls*t.
Just sayin'
You are so tremendously helpful to many of us here. Actually, I doubt I would even still be on these threads if it wasn't for you as your posts were among the first that I "connected" with.
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You are so tremendously helpful to many of us here. Actually, I doubt I would even still be on these threads if it wasn't for you as your posts were among the first that I "connected" with.
Thank you! I cut and pasted that because somebody just PM'd me and told me that everybody had warned her that I was difficult and unpleasant. So, it's nice to hear that ONE person likes me and I'm saving it for posterity!
No, there is no patient advocate at my hospital. I had a nurse when I was really sick checking in on me but it's not the same. The support groups in my area are for all stages and I cannot relate to the concerns of early stage women and they cannot relate to mine.
I just wanted to find an online place where we could talk about issues unique to our stage but there is no place. I just die as our forefathers did, keeping my issues to ourselves.
Now I have to clean the darn mirror, there are fingerprints all over it!
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difficult and unpleasant...not to be confused with honest and straight forward. If speaking your mind makes you difficult and unpleasant to some, so be it. Their loss if they look at it that way. You are smart, funny, knowledgeable and I so very much envy your eloquence.
Pfft on them. Some of us admire you around here Ann. You say the things I want to say but am scared to. You call people out on their BS and can back up your reason for doing it. Someday I hope to be as difficult and unpleasant as you are.
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Thank you. I admit to being honest and a "no BS person" and I do know that is not for everybody. I have always encouraged people to put me on ignore if they don't like that style.
While I may call somebody out on what I see as foolishness in an argument, I try very hard not to name-call them personally. I point out flaws in arguments as I see them, but do it without commenting on their character, intelligence, appearance, or whatever. And, if I have called somebody a name on the forum, I publicly apologize. I only want to comment on their argument and position, not them.
I know way too many people in my real life who I disagree with on many topics and yet we are good friends. So, I hopefully stay away from the personal.
And i welcome the other side of the argument, when there is one. Even so, it seems that to many I am a "bully looking for a victim." which I was also told I was.
A dying bully with nobody to talk to about my death. But at least I have a clean mirror. And, an upcoming trip, which hopefully my son will remember fondly.
I'm cleaning the dining room today so now I have to get up and dust. I sit after each thing. And, this thread is way off track so I apologize. You can count "You are a mean woman and a bully" as things people say to Stage IV cancer patients.
Okay, maybe just me.
Sorry, not having a great day and worried c-diff is coming back AGAIN, right after I paid for a vacation...
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I have a "stupid cancer" bumper sticker and some lady I've never met asked me where I got it and who I know with cancer. So I said, me, and she started to panic!!
"but you're better, right? You're in remission, right?
When I explained that I wasn't she started bawling. No lie. Bawling.
Then she ran to her car and gave me her most favorite rosary beads. I tried to console her (WHY are we always the ones educating an consoling others?! ) and told her the beads weren't necessary but I also try to be gracious so i accepted then (I'm not catholic or even Christian).
So I left on my merry way for a great day at work and she say there crying. What's scene.0 -
A blogger was handed a religious pamphlet while on the subway. She said "thank you. And I have something for you, too!" she then handed the guy her bookmark, an old Target receipt."
Dutchie, you should have give her your ice scraper or the one lensed sunglasses from your glove compartment!0 -
Ann,
A big raspberry to whoever sent you that ignorant pm! Dealing with someones shortened life span is too much for many to handle and I think that's why they make insensitive, rude or downright silly comments.
Dutchie, last year when I told the staff at my school,that I had bc (even before my stage IV dx), one of my fellow teachers approached me. She was so upset, almost in tears, shaking her head in disbelief etc. I had to comfort her! That was too weird and although I am glad she cared about me, it was not at all supportive.
Caryn0 -
My gynecologist freaked out when I told him I had been diagnosed with Stage IV BC. He asked about my treatment which at the time was Tamoxifen and zometa only (I had already had surgery and radiation and am ER+/Her2-). He really showed his ignorance when he started babeling on about the need for chemotherapy and overtly questioning my oncologist's treatment plan. Fortunately, I had educated myself already and did not allow him to upset me. His reaction would have really troubled someone who hadn't yet had an opportunity to educate herself and may have destroyed the relationship between onc and patient. Just goes to show that even those in the medical profession don't get it.
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Ann,
It must hurt tremendously to have the very people who should support you badmouthing you instead. I ran into some of your posts early in my search for info and found it uplifting and encouraging to find an articulate spokesperson who had been through it all and still had a sense of humor. It led me to your blog, which I read in one long weekend of late nights (this from someone who's usually falling asleed at 9 PM!) Even though I knew the ending, I was on the edge of my chair reading about your stage 4 diagnosis and all your trials and tribulations.
I've always been open about my diagnosis and encouraged friends to pass on suggestions, even off-the-wall, for treatment and complementary activities. Once in a while there's a gem among them, after checking with reliable sites and my MO. Maybe I'm lucky in that no one has told me (to my face, anyhow) that it's all my fault, but the statements I find hardest to deal with are from all the people who want to pray for me or, worse, tell me this is all part of God's plan. "Cancer is a gift" really takes the cake!
After endometrial cancer, two bouts of bladder cancer and now, Stage 4 BC I'm even more a confirmed atheist and it's sometimes hard for me not to tell them what I think of their concept of God. I'm sure they mean well. I've taken to telling them that instead of spending time in prayer, I'd rather they did a favor for someone who needs it.
Don't let the trolls get you down.
Janet
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Mt kids and I went on a Disney cruise a few months after I was diagnosised. It was a good trip, but I was so exhausted by the end of it, I ended up using a wheelchair through the airport. I think it bothered the kids a little to see me like that, but I needed it.
As we were getting on the airport tram, this women started praying for me very loudly on the train for me. While it was completely wonderful that this woman was trying to help me, I know she scared the crap out of my kids. I don't think they expected me to make it a week after that.0 -
I'm not a negative person by nature, and even though this is supposed to be about stupid things people say, I've had some incredible kindnesses done and tactful things said to me.
In fact I think it's all in how things are said. Although I am an atheist as well, I'm touched when people ASK if they can pray for me. And not out loud or in front of me, just because they want to help. It doesn't become about THEM that way. I've received some incredibly kind and thoughtful things...maybe we can start a new thread about people who do the RIGHT thing for us.0 -
When my niece got b/c she had 3 kids that were under 16 and a husband. Well the school and neighborhood had formed a group of women starting a few years back and what they did (to me) was wonderful When she csme home from the hosp. from that day for 6 weeks soneone brought a full meal for dinner for the family--whether it was home cooked or ordered she never had to think about feeding everyone for all that time. When needed she does it now too, but there are so many involved u end up only making 1 meal the whole time. This isn't a cancer group it's just ladies that started it for the neighborhood and she didn't even know alot of them. My sister (her mom) and I had cancer at the same time so we were useless tfor her but my sister was so happy she didn't have to think about dinner for the family. Which may sound kind of silly but we still thought that wss such a wonderful plan that someone along the way started and it's still going on, unfortunately more people have signed up cuz they've had cancer--but there are plenty of good hearted people out there and they touch lives in such a good way,
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Just today a neighbor told me that she knows she can help me with her plant based diet. Why did I get the feeling it was like an evangelical telling me I can be saved?
Coolbreeze: I didn't suffer fools pre-BC. Now I have even less time for that sh*t. Keep posting, you're not alone.
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Suffering fools helped me into this mess. You better believe it's not happening anymore. But if I hear another person say that their cancer has been a "blessing..." Ugh! Blessing is not the word I'd use.
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"Your getting treatment! Your going to be fine!" by a supervisor after I fled a meeting in which the recent death of a co-worker (she died of heart problems brought on by adriamycin) was openly being discussed- how horrible, her poor children, death is so permanent, blah blah, and I'm sitting there in my wig, my stage 4 diagnosis known to all present.
"Oh, your lucky it's your liver; that's a very resiliant organ!" well-intentioned co-worker.
These posts are heartbreakingly funny- you HAVE to laugh at stupidity, unless, of course, you are crying.
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Where I work we are supposed to park in a lot that is about 2 1/2 blocks from the office. During chemo I could barely walk up my steps at night let alone walk that far to park so they allowed me to park in the lot out front. On a rainy day one of my co-workers came in late and she was soaked. She looked at me and said "How is it that you get to park so close?" Really?????
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