Lets do a Sh*t People say to Metastatic BC Patients
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All good suggestions for kebab.
My own inclination would be to tell this seriously deranged second wife that you really have no idea what the future will bring and neither does your doctor, so she'll just have to cope with the uncertainty.
After all, it's the uncertainty she hates, so make her stew in it.
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I was having my blood drawn before my Zomera tx and was also getting a lipid profile done since my total cholesterol has gone up to 302. It's a known SE of Afinitor. The onc nurse was telling me it's ridiculous to check cholesterol for a mets patient. I wasn't sure if I was understanding her (I don't always trust my Hebrew) so I said, What? So the dingbat repeated it and said, It's absolutely ridiculous! I decided not to ask her to elaborate, though it might have been interesting to see her try to find a way to do that.
Leah
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Surly,
Thank you for reminding me of Buffs! I use them for hiking and camping before chemo and added to my collection during chemo, but mostly went commando. I have not done much hiking the last few years so they were forgotten. A dear friend has started chemo and I am going to get her a Buff!!
I have made an "alter" of cancer cures and well wishes on my desk at work. I may have to get a larger desk! All the well meaning diets, faith healer information, books, pamphlets, tokens and trinkets are nicely arranged. I even have the proverbial bus ( as you could get hit by a bus tomorrow...). Some I keep, others I have passed on or shared. It works for me. People look at it as a library of information others as reminder that there is always hope. I look at it daily and ask for strength and dignity to coupe with this adventure beyond a cure.
Tish
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"Remember, we are ALL tired," from my elderly aunt. Sigh.
"Hey! NICE CUT!" from a bum to me as I was riding around the park on my bike with my kids.
"Just paint over them and when you're finished with treatment, we can try to fix them," from a dermatologist about my painful, fungus-infected toenails from chemo.0 -
Leah, on the contrary it is ridiculous for her to have become a nurse with her empathy level.
Anyway, last night I woke from my afternoon nap just at dinner time, when dh kindly offered taking is out. I first resisted, due to my back aches, but seeing ds getting so excited about going out, I said OK. Having forgotten to take my pain pills before going out, it was not a very comfortable dinner for me. Still, I put on my happy face and tried my best to enjoy it as much as I could. Everything went OK until dh started on how he had headache cos of the level of music in the rest. On our way back home. Well he was the one who insisted us going out??? After the 5-6th complaining, he got on my nerves..I hushed him, reminding how dare he does that when I wasn't complaining of my condition. Poor him & his headache from music, ughhhh!!!0 -
Tish: what a fabulous idea, a shrine/alter of well wishing cures, remedies and good luck charms to help ward off cancer! I just love it, especially the inclusion of that nasty bus!
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What about the "we are all terminal." line? My aunt said that to me and then laughed, like I was being silly while trying to explain this stage IV prognosis. I was speechless but I think I nxt said yes, but some of us are sooner than others.
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Saying "We are all terminal" to someone with Stage IV cancer who is trying to explain her situation is utterly dismissive. I assume the person saying it means "Shut up. I don't want to hear this." Nice, supportive reaction, that.
My response to your insensitive Aunt would have been something like yours, prefaced by "No shit, Sherlock."
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Thanks Tina, I wasn't sure if I was being supersensitive. Sometimes I feel like they can't win no matter what they say to us. My own monther asked me "how long are yo going to be on chemo?" again, I looked at her dumbfounded.
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Rangermom, if a relative of mine had given me that reply, I would avoid them for a long time. Your aunt is trivializing what you are going through, and for her to laugh about it is incredibly insensitive. When someone is so crude, I would say, "wow, that's an incredibly insensitive thing you just said." Then I would walk away and not speak to them for a long time or only when necessary.
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Thanks MrsDivine. I won't see them again till this Oct for a family reunion and I'll say a prayer of protection to shield me from insentitive people. I was just thinking of you a bit ago and wondered if you know of a discussion of how many of the Stage IV that you gathered are past 5 years? I sure would love to know to give me some encouragement. I've been feeling so down lately, wondering if this chemo is working and thought about what the percentage is in our little group that is past 5 years and if it would be more than the ACS's 24% only live past 5 years. Know what I mean? Thanks and hope you have a super holiday,
Linda
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To paraphrase Wimpy on the "we are all terminal" ....its a bit mean, but...most will not get it.
I would gladly pay you Tuesday for your terminal termination today!
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RangerMom, where are your mets. Someone have started listing them in our signature.
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Rangermom, I'm sorry to hear that you've been feeling down. When I look at your signature, I see that you are not even one year with a stage iv diagnosis, (altho dealing with bc since March of 2011). The first year of my diagnosis was difficult for me, took awhile to wrap my head around it all. I cannot say how many women in our group have passed a five year mark. I don't know if there's been a specific thread in the stage iv forum on the subject, but if I come across one, I'll let you know. My advice to those of us feeling down is always, ask yourself what do you really want to be doing, and they try to do more of it. I started doing less housework and other things that seemed to bring me down and allowed myself more simple pleasures like getting lost in a book, a video game, take more walks, go see a show.
Regarding that aunt, I would still avoid her in October. If she seeks you out, you don't have to act overly joyed to see her. Yes, protect yourself via prayer and everything else you need to shield yourself from rude people.
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I added to my signature line. I've been following you SpamGirl and posted. You are amazing and I learn a lot from all of you at this longer than I. I am so glad that everyone on the board jumped right in to offer ideas and suggestions. I'm praying one of them will be the answer for you.
MrsDivine, I had mets during my initial chemo that got missed, its a long story. I think often of what might of happend if we had known that earlier would it have made a difference. Answer is probably not. I get sometimes, like this weekend, where I can't stand to be around people. And usually i'm a very socialable person. Most the time, I do what you suggest, but I think its the bone pain and just finishing up the week of xeloda (blistered feet) that has me down. Being on the board to talk with others is like a life preserve for me.
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Rangermom, there are times I can't stand to be around people, either! Last Friday, I went for my montly zometa iv. One of my sisters chirped that she wanted to go with me as she's on vacation but I was in no mood for her, so I politely told her no. She and another sister made plans for yestereday to go see family that live three hours away and I turned that down, too. Not in the mood. I just can't always handle all the commotion. It's been a busy summer, and I need a break.
btw, I wanted to tell you I live less than two hours from Kent. Currently one of my nieces attends the college there, and we've had other family and friends that have graduated from Kent State. My son chose to go to a university in Pittsburgh, but he and I visited KSU when he was a senior in high school and I loved it and loved the area.
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Another Kent (really Tallmadge) person here. Maybe we should start a new thread for Ohio.
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Not a bad Idea Bobbi. I think only talking with stage IV's gives me any relief to my random and sometimes pessimestic (sp) thoughts and I know you all understand and won't try to poo poo them. We all get out of them, and after we've had enough time to wallow, we get back on the bright side of things. No one else can listen like we can to each other.
MrsDivine - thanks for the info on your visit to Kent. Bobbi and I live close to each other. I have family in Bellefontain OH where I sometimes go to visit, but like you, its really hard to be around them and I'm better off when I stay to myself and limit my exposure. Next Oct. we'll all be together for that family reunion. I think I'm just going to tell everyone I'm fine and try to not get into any discussions or try to educate anyone. That's where I get into a mess and it is a downer for me.
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My mom has Parkinson's disease, she is 77 years old but still gets around just slower. Someone told me "Hey at least you don't have to worry about getting Parkinson's!" I just turned 50. I was like yeah buddy I rather die in my 50's, after going through enormous amounts of pain from treatments, than to live a full life, see my son get married, have grandkids...etc. Why would I want an extra 30 years to live. Some people are just stupid!
I told him he was right. People should die young so they won't have to worry about elderly diseases. Then I smiled and asked him if he wanted to join me. I doubt he'll ever make a comment like that to me again.
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aaoaao, what a terrific come-back!
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Thanks TheDivineMrsM, I happen to have a weird, sarcastic sense of humor and it doesn't take much to set me off. I tend to bite my tongue except when it comes to idiots. When you have cancer, especially terminal, people can say the dumbest things to us. I usually let it go but if something really ticks me off, I have a harder time holding back.
Another example of my humor is when a phone salesperson kept trying to sign me to a 2 year contract after I said no several times..I asked him what the reception was like in a box 6 feet under. Sorry dude I just couldn't stop myself.
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A while back got a call from some fund raiser trying to get funds for breast cancer. She didn't have an answer for me when I asked how much my cut was.
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NYC, that was a great response..LOVE IT!
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Hahahahaha, thanks for the chuckle, girls!!! Love both of your replies!!!!
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Oh, I forgot the snappiest thing I ever said. A checker at the supermarket (youngish man) asked if I wanted to contribute to bc research. "I already have. Left and right," I said as I pointed to my chest. He looked horrified and embarrassed. I kind of felt bad. He wasn't more than a teenager.
Caryn0 -
You ladies sure are ornery! lol
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Here's my story of sh*t people say..
I'm celebrating my 50th birthday at a crowded restaurant with family and friends. A lady stops at my table and says quite loudly..."You have cancer". I guess my covered bald head gave it away. I told her yes I do thinking she'd go away. She proceeded to tell me she had two relatives that DIED from cancer. I told her I was sorry but that I'm doing fine. She then added that she also had a couple of friends who DIED of cancer too. I assured her I was doing fine. She then ask.."Are you doing chemo?" I told her yes. She than said "that's too bad." I again told her I was FINE. I swear she looked at me like I might fall over dead at anytime. At this point she that's good and walked away. Seriously who does stuff like this. Everyone sat at my table in stunned silence, they didn't know what to say. I let them know that this has never happened to me before and this lady was just a "little" nuts. My friend said she thought it was the rudest thing she ever saw. I told her it doesn't bother me because I don't focus any energies on rude people. However, if I weren't in a restaurant surrounded by family/friends trying to have a good time (and them not wanting to be reminded that I might die from cancer) I probably would have went off on the lady.
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Lol, Caryn! That was a good one.
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aao, yeah, that woman was bizarre. I work with a younger gal who was diagnosed with bc about a year or so before me. One day we were both at school and a third co-worker started telling us about how much she admired us because of what we went through. Then she mentioned a relative who'd had bc, suffered, died. The younger gal spoke right up and said, "We don't want to hear stories like this. It doesn't help us." She was very assertive. She was even waving her index finger back and forth, like, nuh-uh, don't do it. I know the co-worker was trying to be well-meaning, but the younger gal stopped her in her tracks. I learned a lot through that, and if I ever encounter people telling me the horror stories, I will say the same thing.
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TheDivineMrsM, yep I don't get it. Why do people think it helps us to hear stories about people who died from cancer. Haven't they ever hear if you don't have something nice to say you should say nothing. Dead people stories aren't nice for people fighting for their lives. I'm glad your friend was assertive, I have to be more like that too. I need to tell these people, if you don't have any happy stories about friends recovering from cancer just be quiet. Another thing I don't need to hear is when they say they understand the nausea/fatigue I feel because they had the flu and had nausea/fatigue. First, I've had the flu and food poisoning and it is no where near the same as chemo nausea/fatigue. Second, the flu's most severe side effects usually subside after 24 hours. I never know when or if I'll ever feel normal again. I usually don't say nothing to them because they probably mean well and they're just naive.
I guess people saying rude or ignorant things to us is just another part of having cancer.
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