The dumbest things people have said to you/about you
Comments
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I have never cared about what stage we are able to post in. I'm stage 4 but I believe all of us should have access to all the threads. It's how we learn, cope, encourage one another and gain knowledge for our own journeys. I don't know why some of the stage 4's are so militant about not letting others speak on "their" thread. We're all fighting the same battle no matter what stage we are in.
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Thankyou milehighgirl, and "militant" seems the appropriate word, for a few at least. I don't think anyone in their right mind would purposely minimize those of a higher stage. I know I wouldn't.0 -
We'd like to chime just to make a few points.
The Stage IV forum was written up the way it is following requests and discussion with a large group of women with Stage IV. There was also some discomfort expressed from the women to have caregivers ask questions that made them feel sad, and uncomfortable, and thus we started this forum: For Family and Caregivers of Members with STAGE IV Diagnosis. For the women who have questions or concerns, but are not stage IV, we set up this forum: Not Diagnosed with a Recurrence or Metastases but Concerned. There is a very lovely group of women who are extremely helpful.
We feel that we have so many places in our community for everyone to come together and discuss. Naturally, if you have specific suggestions, please feel free to PM us.0 -
I need to clarify before I go on that I personally don't care where people post and never have. I don't discount lower stage breast cancer people because I've been there myself. I experienced Stage IIb back in 2009/2010. I know the pain, stress and fear caused by this disease. However, my Stage IV experience IS different from my lower stage experience. Yes, there was fear of recurrence but there was also HOPE that the odds were on my side and I would never have to suffer through this again. With Stage IV, the hope is gone. You KNOW you will die sooner than later from this disease. You also know that this death will occur over a period of time where you will have to endure chemo, surgery, radiation, etc. FOREVER. You know that there is a real countdown of how many treatments are available to keep you alive and this precious life will be paid for with growing pain. You know you will be a burden on your family but they will suffer because they not only want you to be there but need you to be there. I've seen the horror on my son's face when he realized I probably will never see my grandchildren (unless there is a miracle I definitely WON"T see them grow up.) I pray every day that I live long enough to at least see my son get married. Yes, we will all die someday but I'm running from death everyday. Everyday I see him closing in behind me. I also believe that saying most Stage IVers haven't had mastectomies is incorrect. Most Stage IVers were lower stage before recurrence and they experienced the same treatments. So if most lower stage people had mxs than by reasoning those same people who had the misfortune of recurrence also had mxs. So please Barbe1958, don't discount our experience either. Your fear of progression isn't the same thing as a Stage IVer, trust me I've been in both boats. I have progression, you don't. Yes, you have fear that it MIGHT happen, I had it happen and I KNOW it will progress further. You also imply that we're lucky because we're STILL undergoing treatment and you're not. That's like saying "we're lucky because the hell that you went through during your tx period is going to be happening to us forever." Sorry, I don't feel lucky because I have to have chemo for the rest of my life because I get to be doing some form of treatment. Let me make this analogy...it's like saying I prefer to be hit and dragged by a bus than to worry that someday I MIGHT be hit and dragged by a bus. I prefer to KNOW that I will probably be dead within 3 years than to worry that I might have cancer again if I happen to fall in the minority that have a recurrence. I know you didn't mean to be insensitive but that is what I felt when I read your post. This is why some Stage IVers don't want others to post on their threads. Because most of them have been in your position but none of you have been in ours. I'm sorry if I come across as harsh but that is the way your post came across to me. I really don't want to fight because I think we all have been through a life changing experience that we will never get over.
I've written a poem about my thoughts on that proverbial bus in another thread. This might help give some insights into how I feel.
http://community.breastcancer.org/forum/8/topic/814652?page=1#idx_230 -
Sorry Barbe1958 but I feel this is falls under the category of "dumbest things people have said to you"
We are ALL dying. ALL of us. No ONE gets out of this world alive!! MY fear of progression is just as REAL as their fear!!!! THEY are under-going treatment as we speak. I'm NOT!! (Really? Just think about it for a while in context to what I wrote above)
YKYACW you are more fearful without treatment than WITH it!!! (If this were true would lower stage people be looking forward to and celebrating the END of treatment? I was one of those people and I was GLAD to be out of treatment as I'm sure if you took a poll of people finishing tx they would also be GLAD it was over. Maybe if you wish for a recurrence so you can still get treatment your fear would lessen, I know my fear is much lower now...really? Trust me a slow, painful death is far more fearful than the chance of recurrence. Like I said, I've been there and I know it is.)
I will try to understand Barbe1958 how you feel because maybe you've had a bad experience with not being acknowledged for what you've been through but that doesn't mean an attack on people who are dying from this disease is warranted. Your attitude not only made me sad it also actually made me cry. You made me feel that the "death sentence" given to by my doctor was comparable to wondering if you're going to die tomorrow or live to be 80..90..whatever. Statistically, which is more likely. Everyday I'm aware that I'm dying, not that I might die, but that I AM dying. If my painful body alone doesn't remind me, my ongoing treatments reassure me that the txs are probably killing me too. However, the txs are all that we have to fight for life. The fear that EVERY scan is going to show progression, (I get scans every 3 months so I'm lucky enough to live in fear for days until I get the results every 90 days.I guess I should be grateful that I'm fortunate to be GETTING scanned all the time because I don't have that fear of recurrence anymore.) I hope you NEVER have to sit in front of your doctor with your family and be told that you have an incurable disease and that life expectancy is less than 3 years. Trust me FEAR will smack you and your loved ones out of their seat. Believe me, my son and I would give everything we have to be back to the place we were before.0 -
{{{aaoaao}}}0 -
aao, thank you so much for posting. I agree with everything you said, and you stated my feelings when I couldn't do it. I wrote a very brief post that wasn't well received. I didn't try again, because, truthfully, I'm too tired and depressed, and too sick. I was especially amazed that someone would envy those of us in continuing treatment. I wish I didn't need to take my Afinitor every day, and then stay awake every night scratching until my skin bleeds. And then, when the Afinitor stops working, I get to go to a harsher treatment. And, yes, I had a mastectomy many years ago. Why would someone think people with stage 4 don't have mastectomies? Most of us started out at a lower stage. Anyway, aao, you said what I couldn't. Thank you.0 -
Thanks for the hugs. I needed it because I'm crying right now. I'm just so tired, I've been doing chemo for 6 months now and I'm waiting on CT results I had done on Friday, I've got chemo tomorrow and Wednesday I have a bone scan. My breast expander just broke and is completely deflated. I guess it doesn't matter because reconstruction is off the table now. I can't even delay treatment long enough to get it taken out of me. No doctor will touch me. My dentist won't, I couldn't even get a painful hemorroid excised because of infection risk. Part of me just wants to give up because I don't know how long I can do this but I can't because I'm so afraid to leave my son...he still needs me. This is the hardest part of living with terminal cancer...you're tired of fighting but you know you can't stop. Everyday I wake up feeling so damn tired, physically and emotionally. This has only been 6 months since my Stage IV dx, can I even get through years of this. Yet I pray for years of it because it is all I have left. I'm sorry but I need to stop typing right now.0 -
aaoaao.....no words, just wanted to send you sincere caring thoughts....and a huge warm HUG xxx
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I'm sobbing so hard right now that I couldn't even answer my Mom's call because I don't want to worry her. I started crying while talking to my sister and she didn't know what to say. She tries to avoid any cancer talk because she can't handle it. This is terminal cancer...you have to put on a brave face because it hurts your loved ones to see you suffering. I pretend everyday that I'm not upset or worried. Hey it's only cancer and I will beat this, even though I know that I won't. Sometimes I just can't hold back the emotions and I hide from them when this happens. It's unfortunate that my sister caught me at my low moment. It's okay, I will cry today and return to the fight tomorrow.0 -
aao, I do wish there was something I could do or say to help but I am at loss. Just know that you are in my prayers.
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aaoaao.....wish i could say the the right words to comfort you at this very difficult time, if i lived closer to you i would be straight over give you hugs and support.
Constantly hiding our emotions coping with treatment, so so draining, please be good to yourself, sometimes tears are the only way to give us strength, you are in my thoughts, and prayers xx0 -
If anyone wants to get some insight on what it's like to know you're dying of breast cancer, please read this thread. She's had to give away everything she loves because she's preparing for her upcoming death. Please read this and then tell me that the fear of recurrence and the belief that someday everyone dies is worse than what she is experiencing. We actually had some lower stage people post there and tell her not to give up and to keep searching for new txs. This is why some Stage IVers don't want people posting there that hasn't had this experience. Most Stage IVers have researched and tried every tx out there before the body finally says it's done. Telling a dying person that they should do more (when there is no more to do) and that they're giving up is hurtful. Again, lower stage people need to remember..most of us have been where you are, none of you have been where we are. Walk a day in my shoes then you can tell me what to do and how to feel. Trying to have a separate thread isn't meant to be mean to others, it just meant to give us a private place to grieve and seek support without comments (usually meant well but unknowingly hurtful) from people who aren't on our path. Please understand I know most mean well and you all have been through what non cancer people can never imagine. I pray that everyone here never has a recurrence and can celebrate a long life.
http://community.breastcancer.org/forum/8/topic/809425?page=28#idx_8110 -
I really do want to thank you all for the support. I really do need it because today is a really weak day for me. I have been given tremendous support from many of my breast cancer sisters, of all stages. Believe me I wish none of you had to know the devastation of cancer on a person. I know you have many of the feelings that I have. All I can do is wish that none of you experience this again and can look back, hopefully when you're very old, and be proud that this is a struggle you fought through and won. God bless you all.0 -
Mods thankyou for chiming in and as always, thankyou for ALL YOU DO and last, Thx for that link. FOr some reason I just didnt identify questions about Stage4 and the "Not diagnosed...." Forum. Perhaps its just me, and an organizational thing, but I do find all the topics somewhat overwhelming. I realize this job must be anything but easy to set the Forums out in a logical order when at the best of times we all think differently. I do see some Forums I wonder if they cant be merged. I will consider this and will PM you if I get some ideas.
aaoaaao, thankyou for your posts and not to lessen anything at all youre going through, the reality of your pain and suffering is not news to me and it is not the issue, or at least from where I sit. I will clarify this because of what I posted namely the word " EXACTLY". I looked again at barbes posts and in retrospect I would have to think again on some things she said but not the main crux of what she was saying which I took to be a condescending attitude from some St4ers and which Ive seen myself. I am right there beside her on this aspect. I make NO apologies for standing up for equality. We are not here to be backhanded by St4ers but to learn from if they want to help out at the time. I can assure you (trust me) there are waaay more dumb and hurtful things said than what Barbe said. I would hope we could cut people some slack who aren't intentionally insensitive.0 -
aaoaao
Sending you a big cyber hug.0 -
Well I see there was a whole heap of posts that came in while I posted. I am SOOO sorry aao what youre going through. The best way for me to express that is the best I know how. Even then Im thinking...How can I portray that Ive seen this misery and had to watch it til its bitter end without someone else telling me Im minimising someone elses pain.
Gentle gentle Hugs aao0 -
It is offensive Shelly. While I don't agree with the priest's comments it is out of line for another Church to be calling them out and making statements like they tend to blame. Maybe this priest is misinformed but that doesn't mean the whole religion is. You certainly have a right to your opinion, as do I, but your pastor is misinformed as well. diane
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I think we can all agree that some people make dumb comments not meaning to hurt but out of not knowing. That still doesn't make it less painful as this thread is relating to. I do cut people slack but I also feel the need to say how those comments are hurtful so maybe they can gain understanding and to vent. I'm sure everyone here have experience dumb comments and need to vent..again hence this thread. I don't think anyone should be treated badly by anyone else. You ask for me to cut people some slack, maybe you should too. Some Stage IVers aren't dealing well with their dx, their lives being totally destroyed by this disease and they strike out at people, who some may even envy. You still have hope and possibilities for the future and they don't. I don't say what they do is right but I try to understand that they may be in a vunerable state emotionally and physically. As for saying "there are WAAAY more dumb and hurtful things said than what Barbe said" is in itself an insensitive comment. First, it isn't a contest. There are many dumb comments posted here and some hurt more than others but they all still hurt. Second, you're not me and in my situation so your determination that her comment isn't as hurtful as others would mean that the pain she caused me isn't as real as the pain other comments have caused people here. The comments may not have hurt you because you're not me but the pain they caused me are real. What hurts us is personal and individual. I'd never tell you that a comment made that hurt you isn't as hurtful as one made to me. Third, your comment that my pain and suffering isn't the issue is wrong on so many counts. Aren't all the dumb statements posted here hurtful because of the experiences people here have suffered through. So yes the comments posted by Barbe hurt me because of what I'm going through. They're tied together hand in hand. A comment made to someone who had double mxs about getting a free boob job hurts because of what they went through. Finally, your comment that my reality is not news to you...really? Have you experienced my reality personally. Not through a family member or friend but you yourself. Again, please go to the thread I posted above about the lady preparing to die and tell me you've been there or you really know her reallity. I do accept that your comments and Barbe's are made from what you know and aren't meant to be insensitive but this is again an example of why some Stage IV threads are best left to them. The unintentional but still insensitive and deeply hurtful comments made to people already struggling with dying. I've also posted on threads trying to help people with lower stage cancer because I don't want to see them in the Stage IV threads out of need. Some Stage IVers are helpful and some aren't. Some can barely take care of themselves much less provide support to others. Again, cut them some slack too. I'm not saying I can understand everything you're going through but trust me when I say you also don't understand everything I'm going through. Also please be aware that there are many rude lower stage people as there are Stage IV people. Rudeness isn't strictly the makeup of people with terminal cancer.0 -
Musical, I do understand that you've seen other people go through my reality and it is deeply upsetting. I won't minimize that but you still haven't experienced the reality from the dying person's viewpoint. It is a very different position with very different experiences and emotions. Your experience is definitely life changing and very painful but it isn't exactly the same as the person who is gone. I'm not saying the pain isn't equal but it is different. I've had loved ones pass away and saw what they went through and yes it was painful beyond belief but it still isn't the same as the experience I'm now going through. I know my son will suffer greatly with what I'm going through, he already has, but even he knows that he can't feel what I'm feeling. It's just different...that's the only way I can explain it.0 -
An example of how the experiences are different is that I've been sobbing off and on all afternoon but my son just called and said he is coming over to see me. I don't want him to see I've been crying so I'm trying to wash my face in cold water hoping to hide the swelling and I pray I can keep it together while he's here. I have to find my inner brave person and pretend I'm fine. I know he also is experiencing his own pain..which is why he insists on coming over even though I know he's tired from working all day. We both are experiencing pain in our own way. Ones not more than the other but they aren't the same. When I'm dying I know he will suffer greatly my loss and the impact on his life. However, I also am suffering, again in a different way. I know I will not see my old age, I will never experience retirement, I may never hold a grandchild, I will close my eyes for the last time knowing I'm leaving my son behind to face this world alone. Both experiences are painful but again different.0 -
{{{{{aaoaao}}}}}}}
I have been off the boards for a while due to another surgery. I just came back to catch up and I've been reading this thread and I'm so sorry that you have had to go through all of this. Sending you hugs and whatever comfort I can. You give so much inspiration to others I'm so sorry that you had to feel bad. Sending good thoughts and love and wishes your way.0 -
aao vent away - give it to me as hard you like...nevertheless I return your hurt with genuine gentle hugs and there'll be more after my post.
As for saying "there are WAAAY more dumb and hurtful things said than what Barbe said" is in itself an insensitive comment.
No it is not, because it was NOT meant as an insensitive comment. Im sure you know as well as anyone, words are all we've got on forums and if we were to qualify every statement and nuance, we'd have to write much more than sometimes would be practical. For me at least. If you choose to believe that Im insensitive when I plainly told you thats really not my intention, well Im truly sorry but I cant change that. It is what it is. You dont REALLY know me and I don't REALLY know you but we try the best we can. When I said cutting people some slack I meant everyone in general. You, me, everyone. If you look I said "we". Once again, amazing how words are so easily misconstrued . I couldnt agree more about dumb statements are not a contest and nor did I mean it to be. I simply stated it as a fact. If words have any meaning and they do, then surely we can generally come to a conclusion about something that is said. Whats the point of posting anything at all if we all put our own spin on something and expect everyone else to know what they mean to us? Did you read my post that said a went back and looked at Barbes post? If you want further clarification I dont mind, but I think I made it clear what it was I agreed with and I genuinely stand by that. When I said your pain and suffering is not the issue, I also thought I clarified what I meant. I wasnt minimizing you but was talking about something else, that some St4s were condescending etc. You had NOTHING to do with that. Aao the fact is NONE of us will ever be able to understand everything we all go through. Its never going to happen. We have had it made painfully clear time and time again how we dont understand St4. Dont you think we know this already? Nobody has told you what to do and what to feel in a bad way.
Again, please go to the thread I posted above about the lady preparing to die and tell me you've been there or you really know her reallity.
Is that in the S4 boards? If so, sorry I pass. I dont want to go anywhere here as a spectator. PM it to me if you like. No, I might not be in her shoes, but should I be to be able to even dare attempt any empathy? Do I say to people like her, do you know what it's like to be on the receiving end where I end up with the most precious things my sister held dear and has left behind? Do I drill home that indescribable thing I see in her eyes as I watched her dying? I wouldnt even ask you to try and understand that, but do I take that out on you? No, and why? because this isnt a contest. This is not about exchanging realities but doing our best at empathizing where people are.
I agree if you guys want a private area, then fair enough make it truly private. I never said anything about putting demands on those who were not able to answer, in fact the opposite.
Big gentle HUGS and much love and compassion. Again, Im so sorry about your issues. Indeed may God bless you.0 -
Just reading back a few aao. Im not a proficient writer and that last one took ages. NOw Im in tears. You are so right. Its not the same. Theres nothing any of us could do to make it so, but we do the best we can to join the dots somehow.0 -
aaoaao, you are so right. I wish I could give you the hug of a lifetime. I'm a stage 1 person and joined a support group recently that ended up being made up almost entirely of stage IV people. Sitting and listening to the experiences of my fellow group members has been terrifying and painful for me. I feel guilty for being so lucky as to be stage 1 now and also so afraid that I could someday be in the position of being stage IV. Sitting in that room I realized that my diagnosis is not the same as what these people are facing. It just isn't. My fears, my pains, my experiences are all real and deserving of compassion and understanding but they are not the same as what a stage IV person has to go through. I'm expressing concerns about an early menopause and living a life looking over my shoulder at cancer and my stage IV friends are writing out wills and discussing the pain of realizing that this is likely the last Christmas they will ever share with their small children. I have a chance at being cancer free for life and that has been taken from the stage IV people. They have a whole new set of issues and fears to deal with. You are in my heart, aaoaao. You really are.0 -
aaoaao,
My gratitude and admiration for your eloquent posts. I was saddened to see barbe1958 using this forum to express her frustration with how some stage 4 people have treated her.
Of course there is absolutely no comparing stage 0 to stage 4. I hope posts criticizing "some" stage 4 women will stop.
Aaoaao, thank you for expressing so clearly what I could not. For those who want to continue criticizing " some" stage 4 women, I suggest you let it go, contact the person directly who offended you or write the moderators.
I am new to this forum and it is an incredible resource. But our stage 4 sisters do not need anymore grief. They are already dealing with too much.
Aaoaao, thank you.0 -
Firstly, I'm not stage 0. Secondly, we ALL have our own reality!!! No one is right or wrong! Feelings cannot be right or wrong. MY feelings are just as real as aaeeiou's feelings!! She has the right to post her thoughts, and I have the right to post mine! They are not here to be judged, but just read. That's it. You don't like what she says or I say, move on. I get a lot of PM's when I get involved in threads like this as so many women PM me to say I'm posting how they feel, but they don't have the guts to be shot down by the community. FYI, you all do know....there is NO cure for breast cancer, right? Over 30% of us "lesser" stages WILL go on to recur to stage IV. That's why there are still "Run for the CURE" meets all around the world. The other 70% of "lesser" stages won't know they won't recur until they die of something else! Hopefully that is a long time away, but who knows!!!! And I NEVER said that our fear of recurrence was worse than stage IV. Gee I HATE being mis-quoted/understood. I try to make my posts pretty clear. If you misinterpret it then YOU are looking for something that isn't there!
Another analogy. I was waiting to see a cardiac specialist last year as I was blacking out. While waiting, I was on a ladder and I blacked out yet again, and fell. They told me I was dead until I hit the floor and the impact re-started my heart. I got a pacemaker 3 days later. For years I'd had a cardiac problem they just couldn't diagnose. They told me my death would be "sudden" and the specialist at the first meeting told me it was the "perfect way to die". I lived with that fear for over 8 years and assumed I'd die of cardiac related issues. I took over 12 prescriptions a day - half of them for my heart and the other half for the pain of the bone growth on my spine. Even my breast surgeon said "Why does everyone get so afraid of cancer? They should be more worried about their heart!" He didn't know what I was dealing with at the time. So fear of dying isn't only from breast cancer. There are a LOT of us with other issues that are life-threatening so to be spoken to in such a condescending manner is just an insult.
If you re-read that stage IV thread that is in contention right now, you will see how they complain about wanting to be treated "different" and then complain when they ARE treated "differently" by their friends!! So apparently, they only want to be different at bco. 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! We read them because a friend of ours is on them, or the title intrigues us or the topic is interesting and to the point. This is a PUBLIC forum and to that end, you will get people from all over on it.0 -
Hi everyone. I'm new to this forum and wanted to share a thought I've had every now and then. Does everyone remember when Angelina Jolie announced that she had a double mastectomy when she learned that she has a high risk of breast and ovarian cancer? I was with a very dear friend of mine when we saw the news about that and the first thing he immediately said was "she's getting her karma because she stole Brad from Jennifer" and I remember that he was being very serious. That way in May and two months after that, I was diagnosed with BC. Of course my friend was devastated when I told him, but every now and then, I couldn't help but think "Does he think the same way about me? Does he think that this is karma?" He hasn't said anything to me to that effect, but when I think about it, I get very sad
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I value and appreciate each post i read.....thank you ladies.......all of you. Ive needed to read each and every one and smile, cry and laugh. please please please dont spend any of your precious energy getting caught up in defending any feelings any further. cancer (and additional health and life crap) is enough frustration for any of us.
that being said, thank you barbe and aaoaao, for there are parts of all these posts that touched me and ways you both found to put into words what i am feeling. thank you both and all the others that popped in too to post.
so....since my eyes are now so puffy, anyone have something dumb and funny or rduculous to share from a non cyber person? please?0 -
persephone4....i read somewhere on this site recently that we dont "get it" til we get "it". and that is not something i would want for anyone...
anything i thought i knew about cancer changed once i was diagnosed. it is not payback...and making flippant comment about a celebrity is so not te same as what your friend would think of you. if...it is....then time to prune that friendship!0
