My Husband, My Life, My Love, My Family, My Cancer
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Well said, Candy.
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Mae - those sunglasses are epic!
I am very torn over the separation of stage 4 from others. I don't know how to put my feelings in words. I think my personal feelings have (obviously) to do with my overall worldview. I am not a fan of exclusion. I do not like that in some cultures women have to walk behind men. I do not like that at one time the colour of your skin determined what school you could attend of where you could sit on the bus. I do not like that at one time your gender decided how much food you were given in a soup kitchen, men being given more than women. I do not like it when someone says their suffering is worse than someone else's suffering and thus they should get special treatment. Who made you the judge of someone else's suffering? Do you have the inside track on what it's like to be someone else and are you truly correct in judging yourself as worse off? For this reason, I find the Mod request that us minor and unimportant non stage 4 people take our trivial little opinions and posts and move off, to be abhorrent and offensive as hell. Want to divide the ranks and create unrest? Then give some people special status over others, choose a favorite child, draw lines in the sand, Your cancer is minor you have no right to post, your cancer is dreadful, you get a special place all for you. This is never, ever a good idea.
Having said that, I understand the need for people in similar situations to congregate together for support and companionship. Groups are formed based on a shared interest, like tennis or golf or a political view or even a cancer diagnosis. It does indeed single you out from the general population. Your life is not like it was before. It is not like your neighbour's life. Oh, there are some similarities, but for this one added burden you carry. The knowledge of your own death and the unending task of trying to postpone that for as long as possible. Oh, your neighbour is going to die too. You are 100% going to die, he is 100% going to die, it's just that at this moment you Know About It and he has No Clue. Life is lived differently from those two positions, even though death is the absolute guaranteed outcome for both of you. And always was. But metastatic cancer people do have a life experience that is indeed different from my own lumpectomy / radiation / tamoxifen experience.
Would it be acceptable to say that stage 4 people can have their own place to post, but they cannot post anywhere else except there ? That if you want to be stage 4 exclusive, then you be exclusive and stay in your box and never share with anyone else how your journey has been? Because that to me seems fair. Stupid as hell, but fair. Cancer isn't a union. It's not a contest. There aren't winners and losers. Just losers. We have ALL lost the hope to die in our sleep of old age without seeing it coming. We have all lost that mental mindlessness where we didn't have to think about dying. Stage 1 or stage 4, THAT miserable thought was dumped on all of us. I think we cancer people have much more in common than we do that separates us.
I do post on this thread. I do so with humble recognition of the more urgent and dire struggle that most of you face. I try not to dispense advice with how to deal with your cancer because I recognize I have lesser experience in this area than you do. I attempt to tread lightly and with quiet acknowledgement in the area of advanced cancer. (all other life topics are fair game though and I happily add my two cents to all of it!) I understand Divine's desire to have a place of her own. I do! But I also see people who are excluded by this and I wonder what was gained, what good was done, by closing the door on those people? Did it make your day to day cancer experience more pleasant and easier to bear? I doubt it.
Perhaps there needs to be a PRIVATE and HIDDEN topic, thread, chat room, whatever, that you can only be INVITED INTO BY THE MODS. Once there, you can be as exclusive as you want. But it must happen OFF SCREEN, away from the eyes of every other poster on BCO. Because this division of the ranks, the Mods coming out and saying that some cancer is worse than others, (and yes, you're damn straight that's what you're saying!!!) is not acceptable to me. It's inviting some people to be set apart as special and chosen and that just rubs me the wrong way. I think such a place can exist and likely should exist, but good manners and social grace says it must be quiet, under the radar, invitation only and not under the nose of every other terrified and hurting person who shows up on this site looking for support.
I truly hope I have not insulted anyone. I don't mean to. I understand the desire for an exclusive place and yet I see the damage of granting exclusivity on a public site. I think it can be done but must be handled in a very careful and considered fashion. The current request for us lesser cancer people to kindly piss off, is not it.
Note: I have had three choclate chip cookies and a Ding Dong for breakfast so might be on a sugar high and not thinking clearly. Kindly disregard this post as the insane babbling of a poor diet if you find it offensive
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Good afternoon ladies
I saw how many pages passed in one day and said there must be a mistake or something happened. Interesting that ibrance thread is talking about stage 4 too. I used to troll stage 4 when I was stage 3. It wasn’t this website but the the stage 4 folks were called “amazons”. My initial diagnosis was stage 3. It was 2003 and I didn’t know anything. The ladies helped me through lymphedema., mastectomy, drains and chemo. It was web MD. I realized that we were in a different boat but they knew everything. I gracefully bowed out when I realized that they needed to talk to each other about more than just cancer. I appreciate everyone here sometimes I do want to share with only stage 4 but I don’t express it. Honestly I was stage 3 and NED for 13 years. Enjoy that blissful diagnosis and pray it lasts forever.
Mae you look gorgeous!
Dorimak that was an awful steroid no treatment no radiation time for you. I’m happy you changed doctors and wish you weren’t alone. Check in as often as you like. We’re here for you.
RIP cokie Roberts.
Tanya
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My opinion matches Micmel's. I think this should remain in the Stage 4 category, but allow others to post if they feel inclined. I'm a bit perturbed with the Mods, to be honest. Why are you dictating who is or is not allowed to post on a site? MBC is hard enough....do we really need to monitor those different stages of our disease. To be honest, I am totally offended. I think you owe us an apology
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Thanks for all the compliments ladies.
With regards to the early stagers posting here, I welcome those who’ve found a home here, who have been sincere, respectful and show up for pocket duty, I also prefer this stays majority stage IV. That being said, can’t we just forget the mods friendly reminder ever happened?
I appreciate them looking out but in my mind, it ain’t broke.
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Runor,
I just read your post. Bravo! Don’t you dare ever go anywhere. We LOVE you here. You are seriously awesome at writing what most of us feel. You are good, girl! Hope you always come here and engage with us. We need you. We need not just your humor, but your incredible insight. I often struggle with words (I didn’t use to before treatment), and you say, so often, what I am feeling. I cannot tell you how good it feels to have a BC sister (who cares what stage?) say it like it is.
Love you, girl!
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Runor and booboo, I agree with both of you. Runor hit the nail on the head, I have NOT hear anybody complaining about an earlier stage person giving advice on how to handle their own treatment. Just people here who are in a family and to rip family away from earlier stagers is wrong.
If people were discussing how or when to enter hospice (for example) or talking death with dignity, things dealt with more in Stage IV then I can see the metsters commenting on that. If people are just being sympathetic, send their thoughts and good wishes ANYBODY can do that. I don't want people excluded due to stage. I have not seen any earlier stage insisting there is a cure or pushing values on those of us dealing with Stage IV. This thread isn't so much about advice on dealing with symptoms as it is a family. We should not be forced apart. I feel so connected in such a short time. I don't want anyone forced out of here. I don't like having to be separated away in a thread that is mostly about compassion and what we are up to, how we are feeling, support when it is needed. And humour, lots of humour to be had.
The other reason I don't like separation is due to pinktober. I always feel it is more about earlier stage, curing and not enough focus on breast cancer as a whole. Having separation here would feel similar. Yes this is in Stage IV but I have not seen anybody forcing their experience or views on others. Please just leave this thread alone and allow people to post.
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Thanks ladies for all of your opinions and thoughts. I honestly deep in my heart never did care about the stages. Like the steam room where I used to post. Someone invaded our spot here. That is when I minded. I agree, nothing but respect and love is here and we are a family together. I don’t think it’s solely medical, at all. It’s personal feeling , emotions and help when we feel badly. I loved what Mae said.
In defense of the. Mods they are leaving the decision up to me. I really want the thread to stay in the stage four category. I also want my select few people to post when. They want to. I need humor. I need the laughter and I need the support. I myself, invited them, so if anyone’s is wrong it’s me. I guess I’m the one who broke the rules. It was a connection and feeling. It wasn’t an open invitation to have everyone and anyone post here. I hope that will be acceptable to the mods and you all.
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Dear god Micmel, are you going to draw on that kitten with a Sharpie?! Give him a moustache!
I see this thread as Micmel's living room. She is reclined on the sofa, feet up on the coffee table, the coffee pot is burbbling and the radio is playing some happy music quietly in the background. The doorbell rings and she shouts, Come In. In comes Mae with her suitcase and starts showing what she's got packed in there (I expect a lobster). Grannax pops in covered in drywall dust and paint. Tells us about her renovations. Divine knocks on the door, comes in, pours a coffee and joins us by saying it's a good thing Hub found something to do or lord help us all. Yndorian stops in and we all try to speak to her in really bad Spanish and she laughs at us all. This thread is a place of joy, feet up, relaxed talking and an ever brimming coffee pot. It feels good to be here. Safe. We laugh with each other, we hold our breath with each other, we weep with each other. I hope this thread, this cozy space hosted by Micmel and frequented by the revolving roster of visitors, stays the same. Unchanged. It does not get better than this. I deeply appreciate this finely crafted space and each person who posts here - even if I can't keep everything and everyone straight all the time! This is a special thread. At least it is to me.
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Hi Micmel..any time you post a kitten photo, I will respond! I love those.
I see I got the roll call..ha. I am still here - mainly hanging out on the Ibrance and liver mets threads.
These past few nights, I have been sitting on the beach babysitting a Green seaturtle nest. There were only a few nests that survived Hurricane Dorian on the Outer Banks coastline in NC. Hopefully, I will get to help escort the little hatchlings to the ocean before the ghost crabs grab them.
I am always thinking of my metastatic breast cancer friends as we live in a different reality. Each day we wake up and hope it is a good day. Hopefully, we are responding to our treatments, our pain is under control, our fatigue is tolerated and I personally raise the middle finger to all of the side effects. Micmel, keep doing what you are doing.
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Runor ~ I adore you. Like No other! Thise are the posts we have come to love and look for. We aren't hurting anyone. I will say that I can compromise with having my regulars stay, all of them and understanding the need for our own place. Runor, Bella,Yndorian,JKL, JFL not sure which one isn't stage four. The bottom line is you're correct runor, I made this to reflect as my living room. The atmosphere you speak of, is what I wanted. I don't want things to change so I've decided not to move it. I don't want our family to have any issues being together l. I'll keep an eye out for more non stage four postings and I will deal with it. But you guys I can't loose, you've become like sisters, I adore you.
I wasn't going to draw on the kitten lmao. I was showing how small the little mister meowgi is. This kitten can't even walk yet . So adorable. This kitten belongs to Chelle's family. They found it in a barn. She's hysterically telling me the names! So much fun ! But I laughed my coffee out of my nose ! Love your posts and adore you!
Sandi~ LOL at you mentioning role call! When I care, I care. Once I care you can't get rid of me! My friends are important to me! I'll get more kitten pictures! They are too cute to deal with. Good to see you sweetheart! Love the sea turtles 🐢 . That’s awesome!!!
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Mel,
You are killing me with his cuteness! What a joy to hold such a little thing in your hands. Heart is melting here..
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Mel, I love the kitten. I am glad you are not moving our home too. Glad also that everyone is staying as well.
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I am just thankful that the mods are allowing to compromise with us. I mean I understand their rules. I will make sure to keep an eye out for any additional issues and address them. I love our family .....
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Mel- I think you have a good plan in place.
Love the kitten pics !!!!!
So yesterday I had Jury Duty. Rearranged my day. Got to the Courtroom and waited, and waited, and waited. Finally the Judge came in and thanked us for coming, but the person pleaded guilty and there would be no jury. Also, since we came that would count as serving and we would not need to serve for another year. I texted a friend last night and told him about my day. My text in part---" Of course, who knows what next year will bring for me. If worse the doc will give me a note so I won't have to serve". His response---" We don't know, any of us, from year to year. Example would be my brother."
Now let me explain. Yes I may be stable 1 year from now, or I may progress but still be pretty good, or I could be really sick, or I may be gone. And Yes I understand no one knows what a year will bring for anyone--accidents, illness, or even a mass shooting in this crazy world we live in. But let me also explain about his brother. He is 43 years old, strong, works for a tree service. He fell and broke his ankle. Had to have surgery and is now off work for 3 months. Pain, financial woes, job security issues. But he will heal. He will go back to work, if not with this company with another. HOW CAN YOU COMPARE THE TWO. I read his text and was dumbfounded. Maybe my friend didn't know how to respond to my statement about myself or maybe he really doesn't get it. No one gets it but the ones going thru it.
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I was scared shitless when diagnosed with metastatic breast cancer. I'd recently found this forum while I was going through testing, knowing that my biopsy showed malignancy. I'd see the stage iv section and it literally made my blood go cold. I was beyond frightened. I knew of several women in my community who'd passed from the disease. When I was eventually diagnosed with bone mets, it took everything I had in me to click on that stage iv link. I did not know what I'd find. What would I read? Would there be bodies wriggling around in pain and agony? Constant weeping? Overwhelming depression?
One of the first posters I saw was a woman with the screen name ChainSawz. Her name told me she was a bad ass. That was the kind of attitude I wanted to be around, There were others like ILuvRVing which showed me that women still continued moving forward, still living and loving life while dealing with mbc.
All that said, I wish I never had to click the link. And I never would have if I didn't have to. If I were lesser stage, I'd deal with the bc and move on. As stage iv, we don't get to have that moving on and putting the bc behind us.
If lesser stage women post in the stage iv threads, I can block them so I don't have to see them. It gets confusing to me trying to understand their point of view on some topics. In my personal life, I have fewer confidants and don't really have the energy to branch off into a bunch of different areas. The only social media I use is Facebook, no Instagram or Twitter, and I keep my friend list low. I can’t keep up with everyone’s life, especially acquaintances I had in the past that were in my life for a season but then we move on. I graduated high school with 300 people and I don’t want or need to know what the majority of them are up to every day or week. I wish them all well, but I can’t get on with my life if I’m so busy keeping track of others’ lives. I have limited time
We're all different. Simplicity is what works for me, on this forum and in my every day life.
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Oh how I want that little kitten Mel! Never mind that I have three cats (and a dog) running my house right now!
I am happy that you worked out a compromise with the mods. Would hate to lose any of the wise, supportive voices that we count on. Even those like me who don’t post all the time are reading and getting so much help and love from this group, whatever the stage. Sisters all.
Mae, I loved reading that you are seeing the Addicts here in San Diego. They were one of my late sons favorite bands. I think I still have his Addicts T-shirt. I’ll have to look.
I am having problems getting my ANC numbers to come up so that I can get treatment. I am taking shots of Zarxio at home. Didn’t work, so my treatment from yesterday was postponed till Thursday, with more shots in between. I’m a little worried. After almost three months off treatment, I really need for this to work.
Donna
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Hey All,
As a compromise, we started a new forum, Stage IV/Metastatic Breast Cancer, Open to All To Contribute and have moved this amazing Topic over. We are trying to respect all members and set rules, and feel this is a good solution. It becomes too confusing when some of the topics in the Stage IV forum are open to non-stage IV members, and some are not.
See you all over there.
Warmly,
The Mods
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well I guess the creators opinions and discussions don't matter. They do what they want anyway. I'm strongly considering just dropping the thread. This isn't supposed to be stressful. Two years old this thread is and all of a sudden they are picking and choosing to enforce these rules they have. To those of you who had issues with non stage four people posting. I wish you would have discussed it with me first. I've worked really hard to make this a happy second home and now the mods come in and take it over after they promised compromise. It's all just bullshit if you really put it out there. We all have cancer. My goodness speechless here
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Dear Micmel, As we PM'd you, you're a highly respected member of our community, and our organization values you tremendously. This thread is very, very special to SO many. So many contributors, so many important topics discussed, so much support and love.
Each thread in the Stage IV forum, as well as in the other forums, have someone who starts the topic, and often continues to maintain the topic. However, that doesn't necessarily mean that that person should decide who and who cannot participate. It can start, in some cases-- and we are not saying yours--, to feel exclusive or "clique-y". Since some other topics within the Stage IV forum are also permitting non-stage IV members to participate, and others are not, it becomes very confusing to members and mods alike. We are just trying to be helpful and find a solution that works for all our members.
We Mods we are human too and while we do constantly intend to enforce our rules, with the amount of members posting and topics/forums at hand, it's nearly impossible to completely police every thread for who is/is not allowed to be posting. Which is why we initially wrote this rule into the forum description so that members can be initially warned. For the most part, it doesn't become an issue unless we are notified of the issue, which is what happened in this case. Another member complained that non-IV members were posting in the IV- ONLY forum, and so the best solution we could come up with is to have an all-stage inclusive IV forum....where topics not exclusive to stage IV could be discussed by all.
Again, we're truly trying our best to be impartial, and provide helpful solutions.
Warmly and with respect to all of you here, and especially Micmel as the OP,
The Mods
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and as my
Reply stated::::::
from Micmel 2 minutes ago
I want the thread back into the the stage four only. I will handle the non stage four posters myself and discuss your wishes and rules with them. I don't think I was even given a chance. I was told one thing one hour and then bang it was shifted already with out any word.
You also didn't answer my question, can a thread. Be removed if the creator requests the thread to be removed and discontinued. ???? That is something I am Considering as well. I don't like BS being fed to me. With all Due respect of course and I realize you're human. But my thread has been established since 2017 if it took you that long to notice three non stage four people posting on our thread you all must be doing an outstanding job. So efficiently Swift. A valued member of the community would have been given a chance to handle the issue before you just decided to take over.
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Runor, lol, pack a lobster, now that just crazy, or is it? 😉
Micmel, dropping this thread is unacceptable, do I need to make some protest signs? We love it here.
Maybe it’s just me but I don’t mind a little compromise, why not proceed with the change to the threads forum description and see how it goes? If it becomes a problem, we can always address that later.
Donnabelle, your son must have been a very cool and somewhat quirky individual, I’ll think of him at the show 🙂
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I’d like to know who complained to the Mods. They don’t have to come back. I hope they stay away, in fact. This is like the teacher who punishes the whole class because of one troublemaker who deserves the punishment. Shame on you Mods. So close minded. And you led Mel to believe she had a choice. This is completely ridiculous
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Mae~ I love you darlin. You know this. The thing that burns me. Is someone is actually complaining to the mods about our home. The place where we share together everything EVERYthing... someone has to mess with seriously four people who aren't stage four? I feel like it's high school all over again, the sad thing is I think I know who it is and it goes back some time.
I was all about compromise for sure. I was the one that suggested the category changes. But some voiced they only wanted stage four here and I value you all. They changed it in like an hour. boom. I wake up and our thread is being focused on. There has to be a reason for that! Someone's playing games. Someone who has cancer is actually worried about what goes on, in this thread. To me that is thee definition of pathetic. I just wish they would not hide, god knows I don't !! Never will!
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BooBoo~I am annoyed to say the least. I could even show the post that says we would do what I wanted. What a joke that right there is.
I did get confirmation that they can remove my thread if I request it to them personally. I'm not going to be battling the place where I battle cancer too. Its not supposed to be this hard. No warning. Nothing. Odd if you ask me and not handled well at all.
Edited to remove last entry. I figured out what was meant. Got me all fired up today! Feel my blood pressure rising ! 😜🤯🤨🥴
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Girlfriend (Mel),
I stand firmly behind you on this. As I think about it, this is exactly why the world is in the shape it's in. The louder one (i.e., squeaky wheel) is often what ruins it for the rest of us. Why do we allow that to happen? For me, it comes down to strength. I only have enough most days to fight to stay positive through this disease. Never, in a million years, did I think this would be a place where the Mods would entertain and actually act on the thoughts of a few over the majority. Damn, I'm pissed. Time for me to contact those who run this organization and shout myself!
Hang in there. I'm going to make a few phone calls. Will let you know the outcome
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Mel, I am so sorry this whole issue with the thread has been stressful and draining for you. I am glad all can contribute as I did not want us separated.
If all of this was started by someone reporting something, I wish it had been dealt with soon. I liked Divine's solution of simply blocking posts she did not want to see. That to me made sense and did not require any input It allows her to only deal with Stage IV issues if that is what she chooses. More people should have thought of that but did not.
I really hope you stay with us and please don't delete the thread. We are a family here and I can say I would be personally devastated if that happened. At the same time, don't let it get you all stressed out. The problem has been solved, no matter how clumsily and if there are other Stage IV people who are bothered by earlier stages, they can either block them to avoid reading or leave themselves without bothering you about it or bothering the Mods.
Mel, if you need a break, I totally understand but please don't let this stress you any further. I also have to say I love the little wee kitten. Hugs and positive vibes coming your way.
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