The dumbest things people have said to you/about you
Comments
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barbe, i look at the PM setup on here as a way for others to encourage you and connect with you. i hope that is what you find it to be.0 -
Musical, I've tried to clarify that "insensitive" doesn't mean that you meant it that way. It simply meant that, as one definition of it states, "not readily aware". You didn't mean to be insensitive, as most people are when they make a hurtful statement, but the words can still be hurtful. So yes, a comment can be insensitive even if it is not meant to be. You've also said we shouldn't pick apart posts because that can distort the meaning behind them. Yet you also picked out certain words in your posts that you felt clarified your message. Words do make up what a message says to people and the use of certain woulds can be hurtful. I wasn't trying to put a "spin" on your message...that would mean I was trying to manipulate people here to my benefit. I have no reason to beg for approval, I felt like you and Barbe did, that I had a message to convey and tried to do that. I'm sorry for what you've been through with your sister's passing, I have been there too. I've lost my father to lung cancer..it isn't an experience I wish on anyone.
I only ask people, if they want to understand from the dying person's perspective what the experience is like, to visit that thread. It is a different experience. No one has to read it, I just wanted to give people unfamiliar with the experience she's going through a place to gain insight. I personally have no problem with anyone reading or posting on the Stage IV threads but I tried to give reasons above why some people have a hard time with it. I post on lower stage threads because I really do want to help people by giving them information from both my Stage IIb and my Stage IV experiences. However, I'm very careful when posting on the lower stage threads so not to increase their fear of recurrences (as said by Barbe is very fearful), remind them that they could die from this disease, or to make them feel that their battle isn't as bad as mine. For those reasons, I find myself tiptoeing on many of those threads as to whether my posting would be helpful or upsetting. Believe me there have been many times that I felt it was better to keep my mouth shut, not because what I was going to say would be wrong, but because it might make others feel bad. An example of this would be the weekly Taxol thread. I'm also doing weekly Taxol so I do go to that thread. I celebrate with each woman that finishes tx and pray she'll never have to do that again. However, if I post there, when someone posts that they've had their last tx, it can take away some of that joy. If I write, Congrats!, they can see my signature and most probably realize that I won't have a last Taxol tx (except when it stops working) and it can give them feelings of deeper fear of recurrence or that their Taxol experience wasn't as bad as mine because it's probably over for them. I've seen this happen on places where I've posted so I know it can happen. So I'm careful where I post and what I post. Do I still make mistakes, definitely.
Barbe, I just don't know what to say. I don't think anyone said you were Stage 0. Also, most chemo drugs will damage my heart too. So yes I'm concerned about dying from a heart attack too. Cancer patients don't die from cancer, they die from the effects of cancer on their organs. Their heart gives out, their liver stops functioning, they can no longer breath due to lung tumors. My son's father has an extremely bad heart. He got a pacemaker/defribulator (sorry for spelling), over 15 years ago and takes daily heart meds. They keep him alive and we all know it. However, he has something that does keep him alive and probably will do so for many more years. He's been doing well due to medical advances and this makes his disease "chronic but still manageable." Terminal cancer isn't a chronic disease, there aren't any devices that will extend our lives and allow us to live a pretty normal life. He's now 74, he's had heart issues since his late 40's (his first heart attack was back then). Then it was controlled by meds and now it's control by his device and meds. He's had at least 34 years living with this and can have many more. I won't. I will not see 74 because I just turned 50. At 74 he is still running his own business, which he loves and refuses to retire from. I love that he doesn't feel like he's sick or elderly. No one could even tell that he's 74 or has a heart condition. Due to my medical interventions, I can't even make it through one day of work. My body hurts all the time, the chemo makes me bald, sick and weak. My constant medical appointments makes it difficult to make any plans at all. He sees his cardio doctor every 6 months...I see my onc every week. I'm glad that he's doing well (especially for our son's sake) and I know that it could change but he's been given decades of life that I won't be given. It saddens him deeply, and my 76 year old mother who suffers from Parkinson's, that I won't live to be in their positions. They've seen grandchildren. My mom (again thank God) is even seeing her great grandchildren grow up. Yes they will die as we all eventually do but even they can see that I will be robbed of the life they were lucky enough to have. As for people PMing you about how you spoke for them..etc. I've had that happen too, and from people of all stages. I'm sure there are people who agree with you and those who agree with me or felt that we said what they couldn't, it doesn't make your message more right than mine. I didn't bring that up, even though you've brought it up twice, because it really doesn't make a difference..again this isn't a contest. I'm sorry that you've had such bad experiences with Stage IVers that you seem to be so angry. I probably will only be another of those "superior" people you post about. I hope not. I can't change any of your experiences, I can only hope that we can agree to see things differently.
I'm not trying to make light of anyone's position. I hope that I'm not being insensitive because I'm not trying to be. I know that it take all kinds of people to make this world run and no one can truly understand everyone else. I just try to write of my experiences and feelings. I also hope to help others gain insight into my world and that I can also obtain insight into theirs. Sometimes that works and sometimes it doesn't. Sometimes you never can comprehend another person's viewpoint because it needs to be experienced to be truly understood. I just pray that we, not just us here but we in the bigger sense, can learn to be compassionate and tolerant of everyone...even those we may not agree with.
Please everyone have a blessed day. I'm off to chemo. I am feeling better today. I was deeply emotional yesterday and I do apologize if I upset anyone.0 -
aaoaao,
I hope you have a better day today, that your chemo is kind and you have minimal side effects. Thank you for the amazing insight you bring to this public forum. I have found BCO to be a place of support and information...a real lifeline to me for the past year. I have read many of your posts and you are so polished, so initmate and so very able to express what others find difficult. You are very respected and beloved by us all.
Barbe, I have also read many of your posts and I feel the same way about your contribution. You are always so willing to talk about your experiences, give suggestions and give hoorays to others in need. You are both great role models and we appreciate all you do, every day, for all of us.
I know the above is off topic, so I would like to add a dumb thing someone said to me last week that I hope will get a giggle or two. My hygenist (who I dearly love and respect) was cleaning my teeth and told me how happy she was that I caught my cancer at stage 1 and that now I would have many more stages to go through before I got to stage 4! Since she was in my mouth, all I could do was give her a wink. LOL
Love to all of us, MsP0 -
Guildedcage: You said you feel guilty about being lucky to be stage 1? Well, I hope you remain cancer free, but know this - no one is promised tomorrow. I have known stage 0 & stage 1 gals to go to stage 4 in five years or less. I think as you say keep looking over our shoulders is what we do, no matter what dx. I don't think anybody with BC feels "lucky" -- at least not me.
AAOAAO- you have a wealth of knowledge and so much strength ! Sending hugzzzzzzz
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Persephone,
I wonder about whether people are mentally making a karma connection about me sometimes as well. A few days ago I was talking to a friend and I suddenly realized that I was confessing that I feel some shame about my diagnosis (and other crappy things going on in my world). I have no idea where that comes from - obviously I'm aware that I didn't do anything wrong, none of us did....but I think our society has a whole lot of trouble absorbing that bad things definitely do happen to good people and somehow I've subconsciously internalized some of the twisted logic. It don't like having to remind myself that I don't deserve this. Our culture is really messed up on this one I think.0 -
Mods, when I booted up this a.m I was really hoping this thread had been left untouched. I want to thank you for that. You will NEVER know how much. Last night before bed, I took the views of this thread. It said 296,192 and right now this a.m. it says 296,397. Thats about 200 views. I hope this thread for those who read it learn, consider, and in their way come out more knowledgeable about where they are at. I realize this wont happen with all but this is not the place to for me to speculate. This to me (the recent posts) is one of the most valuable and insightful "reality" threads Ive seen here. This is people with this horrible disease pouring out their hearts as they try and make sense of their pain and suffering. I am grateful to you Mods for cutting us plenty of slack knowing that with BC things often go off topic because its such an octopus to understand and deal with.
aao 1st GENTLE HUGS. Yes Im a straight shooter, but Im also a very compassionate person. You can never see that behind a computer screen. Because I stand my ground, I often go to extreme levels to be gentle about it. Often this goes right over peoples heads. At that point there's nothing more I can do other than to pepper this with copious amounts of love and hugs. If I lived anywhere near you it would be a pleasure to cry and share my tears with you if you wanted that. It would be as long as you don't see that as condescending. Some people would. I am pleased to still have an opportunity to thank you for what you will never understand. That is, what certain of your words mean to me and meant to me last night. I will qualify so Im not misunderstood. Namely, your suffering, your pain, and fear. I went to bed last night still with tears, and sleep didnt come easy. I wanted to consider (slowly) and think and consider again, every ounce of your suffering, your pain, your fear, and identify once again because it was such a poignant reminder of exactly what I saw. Part of me never wants to forget that and part of me does. It is too deep and I cant explain that. Again, no its not the same because I myself haven't lived it, but I SAW it and if it makes sense to you, I felt it. I saw the needles that wouldn't go in time after time after time. I saw the unutterable suffering because of many things day after day, month after month. She wasnt even St4 from the get go but only lived 18mths. I saw my 89 year old mother watch her die and the cry of despair. THIS is the reality of this horrible disease and others like it. Now I want to read new posts and respond.0 -
Wow. I've been away for a little while and am shocked to see the direction of this thread. I'm stage IV, and we treat each other very gently. Maybe that's why we need our own board. Recently there were some things there that bothered me, cause it was voices from outside our group. I can't handle posts from a grieving mom, or political crap.
I came to this thread because aaoaao is a part of it, and I thought it would be funny or challenging. To find her in tears disturbs me more than I can say.
The process I have gone through this year to reach a place of acceptance for where I'm really at (terminal with no possible remission) has been complex and terrifying. Other stage IVs reached out to me and carried me over a bottomless cravass of fear so that I am able to keep living every day.
Please respect that sometimes we need each other in a way that only other stage IVs can understand.
If we are not able to reach out to each other in a loving and kind way here, what hope is there?0 -
"I can't handle posts from a grieving mom, "
Not sure but was this directed at me?0 -
No, Musical. I was not directing the comment at you.0 -
Thanks JimmieBell.
Please bear in mind this isn't a ST4 exclusive thread and neither is this necessarily a fun thread but where theres also some downright dumb and nasty things said. Yes this has veered somewhat OT but please see there is much benefit in what not only aao has said but others too. Speaking for myself in particular I dont even go to the exclusive St4 forum much less post there. That stance should reflect that I respect St4s. Just becuase we may not agree with some people is not necessarily an attack. If we disagree, then IMO we can do it respectfully.0 -
Thanks, musical.
It's way off topic. Here, I'll get it back on track.
The dumbest thing said to me lately was when I bought a new pair of boots. I told the salesperson that I expect them to last ten years. Then I spent some time acknowledging that I have not really accepted the fact that I will not likely live another ten years. I deided to hold onto the hope and let go of the timeframe.
Last week I was in line at the bank behind an 80 y/o woman and almost had my usual coversation about how much I admire her and hope to be just like her someday. But no, I stopped myself from saying something stupid and struggled with a week of depression instead.
Kindness and love. Please.
I thought about starting another thread since this one's so off track, but what would we call it, bashing sisters from different stages??0 -
1st you thank me then you vilify what Ive been a part of with clarifying. Please, if you want kindness and love, then its a two way street. Respect people where theyre at. St4 doesn't give you a free pass to act condescendingly to anyone else.0 -
I think it is time to get this back on track. I have been reading the last few pages and I am shocked at the direction things have taken. Sometimes one just needs to learn when ENOUGH IS ENOUGH and move on.0 -
This is the last post I will make on this subject because I do not want to hijack the reason for this thread. So please bear with me one more time. I want to apologize to Barbe and to Musical for any ignorant treatment to you from some Stage IVers. We need to remember that when we were going through the lower stage experiences that they were real with many problems, pains, and fears. Unfortunately, some of them will get to Stage IV, like we have. Do we wait to embrace and support them only if they get sicker? We all need to help each other no matter the stage..everyone deserves respect and love, not just the terminal.
The following was posted by Barbe. I gave it a lot of thought while getting my chemo today. Posts here really do move me and make me think. Barbe, I would like to personally apologize to you if some ignorant people made you feel the way you posted.
BUT there are other exclusive mets and stage IV forums they could join. We don't read stage IV threads to "envy" (?!?!) them or to be "wannabees" (!?!) or even to gloat!
All I can say is WOW. If someone actually believes that lower stage people go to Stage IV threads to envy them (why would anyone envy someone who has a terminal disease) is just plain nuts. Also no lower stage person wants to be Stage IV, again who believes that would also have to be nuts. Finally, to say that lower stage people peruse the Stage IV threads to gloat is beyond belief for me. Anyone who would feel superior to someone who is dying because they're not in that position would have to be a sociopath. I truly don't believe anyone here fits that bill. I think some of the Stage IV people probably cruised the Stage IV threads when they were at a lower stage. I didn't because I didn't know about this site back then but if I had I know I would have looked at some of the topics there. Why? To get information, to ease some fears, to get some hope, for many of the reasons we all post here. We all are scared...this is a scary disease. We don't come here to be judged but to be given support we may not be able to find anywhere else.0 -
MsPharoah, I don't know how you stopped yourself from laughing, gasping, spitting up...not sure of the right word. Again, she was just trying to reassure you and isn't aware that cancer doesn't work that way, so you knew not to take offense. But is was a pretty funny statement. When you "get" to Stage IV, do you get a diploma? Hey you finished all the txs available so you can graduate. Statements made by people who mean well but just don't know don't really offend me. It's only when they seem to be mean spirited or meant to hurt that I want to go off on them. I usually don't, I usually just walk away.
JimmieBell, I've had experiences like yours. You forget that you have a terminal disease and ask about warranties and such. Then you realize that the 20 year warranty on your new roof probably isn't a big thing for you to worry about as much. I had a gentleman try to lock me into a cell phone plan for 2 years. I politely refused but he kept trying. I finally ask him what the reception was like in a box, 6 feet under ground. Believe me, he left me alone after that. Afterwards, I felt a bad about what I did because he was just doing his job and I'm sure he probably was embarrassed (since I clearly looked very ill and even cancery (my own made up word). It was right after my Stage IV dx and I wasn't handling it well, so he, without knowing it, rubbed me the wrong way. I learned from that experience not to be so quick to respond to perceived slights. So my motto is: Think at least twice before you speak once. Of course, I sometimes fail at that. When that happens a "sorry" is a necessity.0 -
Joanne, please and people like you, who want to suffocate this part of the thread before it has come to a natural conclusion, think what you're doing. There has been much gold in this thread, maybe not for you but for me at least. If we want the "gold", sometimes that takes work, and sometimes that work is painful. Notwithstanding people being taken wrong, and who at least should have a right of reply, I have really appreciated especially what aao has said among others. I appreciate her honesty, and what she has and is going through. I can guarantee you just about every thread has veered off topic from time to time and this one is no different. It will get back on course like others eventually do.
aao, again if you would like me to read that article, then feel free to PM it to me.
There are some important observations Ive made through this and that is, 1/ I could be St4 tomorrow and and die before those who are St4 now (thanks shelly for your post) and 2/ Its a given that not everybody is the same including those within the stage4s group. That fact has really been cemented in these posts.
Finally, everybody should have the right of reply or the right to question if they feel slighted by someone.0 -
aao, I agree about the unintentional blunders that are well meaning as opposed to the outright mean spirited. It is in this thread Ive mentioned this. Ive made blunders myself trying say the right thing and muffing it. Once I did this and the person snapped at me, and I felt VERY dreadful and showed that. It was plainly me trying to be considerate but just saying the wrong thing even though I said it as compassionately as I could. Nevertheless the person saw it as a golden opportunity to get snarky anyway. Sometimes you just have to leave toxic people behind.0 -
I was about to post in response to the change of direction of this thread... but I think it will be enough to say, I'm sorry so many of you are hurting. Nothing I say can take away your pain. Lots of love & hugs all around.
To get this thread back on track... because we all need some laughs and eye rolls...
I got a phone call an hour after I got home from one of my chemos. It was a charity I had supported in past years, and they were looking for another contribution. I was partway through chemo, out of work for over a year, on Medicaid, and in danger of foreclosing on our house. I tried to gently say, "This isn't a good time, I just had chemo, finances are tight, we can't contribute right now," but she just kept right on pressing for a contribution! And didn't even acknowledge what I'd said! This is a charity that is supposed to help people in situations similar to mine. I didn't even know what to think, I want to never contribute to that organization again, but I don't want to let an interaction with one heartless woman color my whole experience with the charity.0 -
Wow, not sure what happens to this thread. Its been a few weeks since I've read it and it strikes me there is a bit of irony here. On the thread "the dumbest things people say" people are saying dumb stuff. I guess we are all human, and many of us are scared, angry and a bit sad just to name a few of the many emotions that cancer brings forth. The thing that is most important is making sure our very limited energy is being used wisely - to heal, laugh, forgive and get better.
On that note, and on stupid stuff people say, when I told my MIL I had cancer, her first question was "Did you not get regular mammogarms?" - (I had 3 in one year, all missed the cancer). Now that is so stupid and insensitive it deserves to be royally ignored!0 -
Indenial, sorry you had to deal with an idiot. Asking someone for donation when told what you've been going through is truly a strong sign of stupidity. Would someone from a charity providing food for the starving expect a donation from a starving person they should be serving? Sometimes we just can't fix dumb. Unfortunately, sometimes these experiences do color our feelings about the organization as a whole. My sister now refuses to support some cancer related charities because of the lack of true support I've experienced over the course of my cancer journey. Some sell you a line about how they provide help and then when you go to their sites and actually seek out help, you find there actually is very little there. I am very careful now what charities I donate to. I've was given a link to a charity navigator site that helps to determine how much of their resources actually go to their programs and how much goes to other expenses. I never donate anything until I check them out. Once burned, twice weary. I'm sure the site isn't perfect but it's the best I've seen so far. If anyone has another site, I'd love to have it...PM it to me if that is the best way.
Charity Navigator - America's Largest Charity Evaluator | Home0 -
Thank you aaoaao, will check out that site!!0 -
I think this thread has made AMAZING progress!!! There has been a LOT of pain and frustration expressed in what has remained a safe environment. I am PROUD of us!!!! Just to note about aaeeo's post above a couple slots; it was a stage IV that thought us "lower stages" liked to gloat when we read their posts - or were wanna be's. Certainly not me.
As an after thought; do y'all realize that they will have to de-activate my pacemaker for me to die? One of my bestie stage IV friends Marybe, who passed late last summer (2012) actually watched the IV being put in her arm that would giver her increased morphine doses until she stopped breathing. They allowed her dog to join her in her bed as she waited to die. I get it. Seriously, I do.
So, deep breath, wipe away the tears, and continue the reason for this thread! I agree about the warrantee issue! I just had to finance a $5,000 tub-to-shower fix so I can actually step into a shower safely. The guy kept bragging that it had a 25 year warranty. I said "Lucky for it, cause I certainly don't!!!"0 -
Barbe, I'm sorry I thought I made it clear that I was apologizing to you for someone making you feel like gloaters or wannabes. I broke down your statement to show how it would be stupid to be a wannabe or hateful to be a gloater. I certainly never meant that you felt that way. No non-Stage IV person would want to be a Stage IVer unless they were insane. I think that is the problem with not being able to talk face to face...meanings look clear when you write them and then when you get a reply you realize it wasn't as clear as you thought. I am sorry if I gave anyone the impression that Barbe felt that way because I certain she never, ever would.
Yep Barbe, you know how truly life can be short when talking to someone about warranties. Maybe we should ask them about if the warranty is transferable because we won't need it. What really freaks me out is that the shower, roof, etc has a longer life than I do.0 -
Ok, I dont know if I'm insane or what, but yesterday I posted on my facebook (that I never, ever, update) that I had cancer. I was surprised at how lovely all the responses were. The one thing I was most worried about was pity (an emotion that, in my books, is a waste of energy, which takes us away from thinking about the living we have left to do and into the rhelm of thinking about dying). Anywho, my reason for posting on facebook was I had to do my weekly blood at Oncology and found myself overwhelmed with gratatude for all I do have. I may have stage 3 cancer, but I have a husband, family and friend who love and care for me. If I leave this earth tomorrow, I will still be a lucky girl.
I guess this is an anti-rant.0 -
My favorite stupid thing that was said was by my sweet hubby, "Don't worry about dying. We are all going to die someday."
This was his way of trying to make me feel better. It was just so stupid, I just started laughing and we laughed together and it broke my pity party moment.
Warmest thoughts and hugs to all you amazing ladies! Thank you for a chance to learn from each of you!!
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I am new to this thread and find some post humorous and some painful to read. In the few months I've been dealing with this I have found some people to be healing while others are toxic. And so, I distance myself from those whose words cause hurt or anxiety and hang tight with the ones who somehow know just the right things to say and do.0 -
Warrior_Woman, that is really good advice! Not to sound selfish or insensitive, but we need to take care of ourselves first and if there are people or things that are not good for our overall well-being, we need to prune those from our lives.0 -
I truly believe that most people are good at heart and don't mean harm. If they say something stupid it's usually because they just don't know what to say in the moment and just say the wrong thing by accident. I only take offense if someone knows, by the way they're saying it, that they're being hurtful. You're right Scandophile that your husband was trying to cheer you up and it was laughable.0 -
Rats! I'm trying to post a link from Facebook I just saw tonight. It's very apt right now and says:
I no longer have the energy for meaningless friendships, forced interactions or unnecessary conversations.
I NEVER say "Hi, how are you?" No one cares. So if someone says it to me, I ask if they're sure they want to hear it! Now that I'm at a new job, I actually have to force myself to be socially "normal" and listen to peoples "stuff". I am a banker (not a teller) so I spend more time with the clients as I do mortgages, loans, GICs and stuff like that. It's hard when they start to list their woes but I'm learning to let it go.....I can't get emotionally involved (don't care anyway - they are strangers!) but I do have to listen to clues of financial strife so I don't loan money to someone who has a sob story and no money!! Tough position to be in here....be VERY careful what you tell people as we legally have to note it. Don't even KID about buying arms or financing the next war as legally it has to be reported to the government (here in Canada anyway) and I'm pretty sure it must be the same or similar everywhere.
So if someone's "advice" doesn't resonate with me I let it go. I called a friend a couple days before my masts and told him what I was about to do. He told me to hold off and go to Mexico for a miracle cure they had!!! It was that apricot pit theory, which ended up being what's in some chemo's but certainly not something that takes away cancer that is already there!! Also, how many emails did/do people get about hot lemon water to change your body's Ph level???? That would change it for about 10 seconds before you self-balanced again. You "are what you eat" only to a certain extent. Our bodies run on chemistry - not fresh air and green grass.0 -
Barbe, I couldn't agree with you more. I'm always suspicious, and I find it laughable, when someone tells me that a certain hot pepper will shrink and cure tumors, or rubbing grapefruit juice on skin cancer will cure it, etc. Okay, cancer is a little more complicated than that. Our bodies are full of chemicals..potassium, iron, etc We're design to use those chemicals to function and when one is severely out of whack we suffer. I'm sure green grass eaters get cancer too.0
