STEAM ROOM FOR ANGER
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Jumpship- My heart cries for you. It is so much for your body and mind to go through. Lula had such wise and logical things in her post. I just wanted to add that you are a woman because of how you think, feel, care and do things. It is something that no one can take away.
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jumoship, I would certainly discuss hysterectomy with oncologist...unless he sent you to Gyn for that reason. I would get appointment with another gynecologist at the least.
And yes my friend you are still a woman. We don’t want to lose anymore organs than necessary, but remember they don’t work after a certain age and you are still a woman then. It is in your heart and mind.
I had to have total hysterectomy at 32and it did make me very depressed because I wanted more children. I was lucky enough to adopt and now she is 29.
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Jumpship - I hear you - there is a real loss and this is more again.
You guys are right - even if no one is listening at the moment it is a journal we have to write in, readable by others and support given. This is my support group. Here and insomniacs and A place to talk death and dying. These three especially.
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Jumpship, haven't read everything, saw Beatmoms post. assuming discussion on hyster. I had a hyster 1996. b/c twin had ER+ BC... wasn't treatment at the time to get those oophs out, but I knew they weren't on target yet. OUT her's went and mine. I was 46, now 67. Feeling like a woman is in the mind. Never felt less. But DH was impotent for 20 years or so. That dented the scenario. I met my BF 2 years after DH died. We have sex "whenever" Very nice. Could be a few times a week, a couple times a day(rare), or maybe over a week. I'm the little old laaady that is being sexually abused..............NOT.............enjoying every damn minute.
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Wow, some ladies I worked with are quitting and making life hell for the rest of us. They complained and weren't happy before and it's like "don't let the door hit you on the way out". I don't think some people are capable of being happy "if they had a unicorn's horn jammed up their rear while Judy Garland sang them over the rainbow while reading their winning lottery ticket". It will be more work at first but so much better with the new fresh, thankful people coming on board. Just hope I can have them decently trained before nice weather gets here in full swing so I'm not chained to my desk 24/7. Can tell poor little husband's ego is so neglected because I "gasp" went from 25 hours up to 40 - 42 during this transition. Oh and I like playing a lead /key role. I am SO focused on work, learning new things, meeting new people, being praised and recognized by the new owners. For the first time in 6+ yrs my (darling son who I don't love one bit less) is NOT the center of my world. Neither is worrying about my health. Loved informing my highly successful cousin that "my schedule" won't work with his and his wife's vacation schedule this summer. Sorry, we are not entertaining you. My days off will be close to home and spur of the moment. Lots of pool, biking and hiking and fishing with my husband and son...ONLY!
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Hi girls. As I have moved through the various phases of treatment I find myself only keeping up with a few forums and this is one of them. For the most part they are mostly the more social sites but I must say that I am hesitant to post these days and I am looking for your feedback. In the past some of the professional women have been very protective about their identities and many of us going thru divorce issues with vindictive and stalking ex's have been extremely private realizing that anyone can join and a simple google search can bring up forums so even nonmembers can read. I have vented and ranted about my ex, my mother, sister, friends and my children, but now I regret that. BC is an epidemic and sadly many will find themselves here at some point in their lives. Also these same people know what a wonderful support BCO has been to me so it is not such a leap that they could someday find me here, make the association and I would be "outed". Will this be my legacy to family and friends? Weak, scared, angry, and bitchy is not what I want my legacy to be and know that these posts may well remain online long after we are gone.
Today or tomorrow I will start going through my personal journals and private papers that I would not want to be read should something happen to me. Fortunately these things can easily be disposed of but my posts here are not as easy to do. Do you guys share any of the concerns that I do?
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Many people have deleted negative posts. Is that something you could do? Or are they still somehow accessible?0
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i don't think anyone should fault you for anything. Going through BC has no blue print. No handbook for feeling the way you do and it's no ones fault. In my mind.... the name of the room says it all. Your legacy is love and relationships that have stood the test of time, we are allowed to stumble while dealing with BC. It made me realize that I can't make every single person happy all the time. So I would come here to let it out, so I didn't carry that negative feeling towards them outright. I put it here and walked away feeling better, feeling heard. Sometimes when others are scared, of the unknown like we are, no one acts perfectly. I would hope that they would be happy you had a place To come to, that you could release some steam! Life is hard enough, throw in cancer and everything changes. You can be annoyed with your family and still love them. ~M~
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Pere, if I post these days anything personal outside of generic medical stuff I always go back a day or two and delete. Some people write in journals, which I use to do, but until it is heard by another it is not the release I seek. Does that make sense? Deleting posts ruins the flow of conversations though and I hate to do that but I will be darned if my personal issues will be on the internet forever. It is a quandary.
Micmel, you are a joy. I see you here and certainly your loving husband would be so proud and happy to read your thoughts and posts about your undying love for him.
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NotBroken, you are singing my song.
It is a double edged sword that the people we love the most hurt us the worst. Those we truly expected to come through for us often fail us the most profoundly. And what do you do with that when it happens? Swallow it with a glass of milk and hope you don't throw up?
I have kept journals for years, but I realize they are mostly filled with the mundane pointlessness of my day to day life, or anger. It is mostly when I am riled up that I grab a pen and start spewing onto the page. But I burn my journals. Why? Because I want to appear loving and kind and benevolent after I'm dead? No. But nor do I want to appear peevish, bitchy and hateful. But those journals lack context. Anyone reading them would miss the fact that many days or weeks went by between entries. They would miss that MOST of the time I was NOT mad. Because they would be holding in their hand something that was written only when I was mad. But it's not the whole picture. It is a misunderstanding waiting to happen. It's hurt feelings that I can never explain or fix. It is a liability. A bomb. I burn them.
I also used to blog and only wrote when something that stirred my emotions happened. Not always positive emotions. Not all posts were about how great my life is. So, when I was diagnosed with cancer, a blog that made me somewhat uncomfortable made me suddenly realize that again, it was a misunderstanding waiting to happen. So I deleted it. There was some good writing too and it pained me to hit the delete button, but I did.
Yet, what do we do with the fact, the TRUTH, that sometimes when we most need support, we don't get it. When our lives are falling around our feet in shreds everyone else in the house carries on as if nothing has changed. And while we don't expect the World to stop and cry with us we do expect our nearest and dearest to 'get it'. Only they often don't. So... what do you do with that wad of bitter hurt?
I do post here. I have deleted posts. Some I have left up. BUT ... and this is big... I let my people know when they have upset me or pissed me off. I have said to dear Hub that I posted on the site about what an asshat he had been and a mob of angry women were on their way over to kick the shit out of him. I do not pretend at home that everything is just fine but then dump it all out here. Because I do think that is unfair to people. To not let them know there's a problem and then complain about them somewhere else. I give everyone the chance to FIX the problem and if they choose not to then what happens after that, including posting about it, is fair game. No whining later when they were told, upfront, that there was an issue and they didn't think it was an issue or address the situation.
But still. I have made arrangements with a dear friend that the moment she hears about my passing she is to come right over and burn the house down. No papers shall survive.
How much of an actual chance is there that friends and relatives might find your posts and put 2 and 2 together? This is a BIG site and you can search through lots of posts and never come across yours. They'd need to be specifically looking through may old posts to gather enough evidence to make a guess about you being you. I'm saying that in the scheme of things, your worry about it is probably bigger than the actual chances that it would ever happen. If someone came on this site looking for me, they wouldn't even know where to begin. I think chances of you accidentally being recognized are very slim.
Still. I do understand your feelings. I have curtailed my own journal writing to leave out a lot of the emotional elements and in a way, that is dishonest. I come here with my emotional outbursts because I am in the company of people who Get It, and who have similar problems and have made similar posts. Overall I think here is a safer place to vent than a journal. At least here there are other people who say yup, get it, mine did the same ... and that provides the context and backround story that a home journal often lacks. At least if a relative reads your posts, and others, they might go away thinking that yup, they did indeed drop the ball and screw up and it wasn't just you being a bitchy princess. That is one positive in being part of a shared group experience. It's not just you.
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runor, anger is fleeting but these posts remain forever! The change in me was when I was doing a random search on Google and right there was my post on frickin' hair loss for the world to see. There I was whining about how gorgeous my hair use to be, it was my persona, who I was, my best feature, and my hair and my boobs are gone or compromised,.... blah blah blah.....I was horrified!!! And for those suffering the truly horrific consequences of cancer, which hopefully I will never have to experience, do you all really want this stuff out there forever? Do you want your sadness, struggles, fears, hopes, all your inner thoughts, body failures all out there for others to read like they watch a soap opera? I am so sorry for being so bold. We are a sisterhood and brotherhood here, but after where I have been with my ex and that google search, I am creeped out. There are trolls and lurkers out there and it gives me pause.
On one forum we have shifted to multi emails and converse there for privacy. Perhaps that could be a suggestion to moderators. PMs are great but they can only be addressed to a single person and often we need the strength and input of more than one trusted friend. Now that BCO is revamping everything with this million dollar upgrade would that be a thought worth sharing with Mods? To be able to add several recipients to a given PM post? I don't mean to be non inclusive but some conversations are better in more private settings, no?
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there are a ton of user names. I dont get how you can be outed if you dont post your pic and you dont use your name. Many people go through divorce and such awful issues.
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Rosabella, if I share here how I spent my weekend in Chicago, if my dog just died, if I just put my mother in a nursing home, if I just broke my ankle, that I just moved, etc...You don't get that there could be a pattern?
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everyone has such valid points. I suppose each will choose what best suits them. I would hope that in the midst of you or I even being gone. Would be a serious and emotional battle for them to endure. Unless they really know your nickname and sign in, they do not even have full access to all posts you have created. If you google some cancer topics a lot of the engines direct the person to BCO, because every topic on earth dealing with cancer has been asked here. Unless someone really has a heck of a lot of time on their hands, they would need to be one heck of a dectective. I personally have told my DH about my thread, and have given him the information to log in and read how much in love with him I am, and to read my posts like a novel of out life. When we had arguments, I didn't dash here and dump about anyone specific. Just general disappointments, and if someone in my family. (My kids) are floating in the river of denial.... I've told them! Personally If someone wants to spend that much time looking into someone's heartfelt, gut wrenching raw emotions while battling the fight of your life, then they deserve to read what they find. Clearly they weren't doing something right.... and everyone needs to be held accountable for shitty behavior at some point in their lives. I wish you the most peace you can find wrestling with what you're comfortable with. Much love ~M~
Waving hello to Runor~~
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None of my family/friends come here to read any of this. I guess I don't understand the concern about what's on the posts. If you vented and complained about something/someone, we know its just a rant and nothing more.
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Micmel, if you knew my ex would better understand better the length he goes to stalk me so I am jaded, but I also told very few about my BC while others were all about pink and so proud to wear their cancer dx on their sleeve. We are all different and life's circumstances and experiences changes us, or jades us. I still love BCO for real life experiences, knowing what others in the best medical facilities are doing, latest medical research, (thanks marijen), and overall still it is an amazing resource but using it as a social network is intimidating. I don't do FB but even there you invite others in, no?
Thanks for feedback guys.
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I told my dd when she was young, "Be careful what you post on Tumbler, Facebook, etc., because it can take on a life of its own."
Same with emails. They can be copied, pasted and taken out of context.
I don’t post that much on Facebook anymore either. Just essential stuff that i want people to know. I try to stay out of political discussions because once i'm gone what difference will it make?
My family is small, and my group of internet "friends? is relatively small too. My dd has my user name and p'word so she will be able to post here when I finally transition.
I feel for those of you who have butthole families and friends. My dh and dd pretty much get it. If anything, they are somewhat overprotective of me. Dh gets upset when i bend over and pick up a piece of lint off the carpet...he worries about my bone mets and spinal compression fractures and the dizziness that the brain mets have caused. It's hard for me because. I have to depend on him more and more. The drs don't want me to drive anymore because some of my brain tumors have been bleeding. If i were driving and a massive hemorrhage occured, i could kill someone.
I've only had to delete one post on these threads about 9 mos ago. I try not to be flippant about what i post. We have to be so careful these days.
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mistyeyes, it is not just this forum, it is all the social forums here regarding building friendships thereafter that are impeded. If you want your posts to live on for prosperity then do it. As for me my early struggles in DX, recon, and thereafter I was very alone and struggling. It pisses me off that those desperate times are forever my legacy via my posts but going forward I will not be talking about my vaginal dryness on BCO. Oops...I guess I did. Now I can google "Vaginal dryness" and see my post.
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Hubby knows everything I have ever said. Nothing negative about my DS has crossed my typing of it. But my DD who I have been at odds with especially when she was living here and not helping, that bothers me. I think I would go back to the one or two posts that said it all and edit those to make the conversation on my side lighter than it was. But delete it, no.
I can see how family and friends would find our lead into bco. I have a page of logins and passwords, this site is on there.
Also, when I am in trouble healthwise or have crossed over, I would want a family member or my hospice nurse to come on here and post for others to know something at least and my obituary link. So the login will be out there to accomplish that.
Journals - burned those 5 years ago.
Steamroom topic for me today - this cancer shit messing w my food. For a few years now I cannot eat right due to the infernal cough from food in my throat. And then the sick feeling so my appetite is nil. And the inability to eat even w an appetite. But TODAY I had a bowl of broccoli cheese soup. And I still wanted more, so the waitperson brought me some brown gravy which I dipped Hubby's fries in, yum. I ate the third and a knifing pain was in my stomach, doubling me over. Took a long time to pass. Do know it ws stomach, not liver at first. But later was moved higher on left side and liver lesion spot. So royally ticked off that the cancer messes w my food. I like food. I like to eat. I liked to cook and loved dining out at gourmet or organic type restaurants. Now I can barely get through the meal and make it out of there to go home.
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I dont know. We all here have our own shit cancer or not. Any family member or friend that isn't behaving so to speak I cut off for it's not worth it. I guess i dont care if someone i know should find out i have brown discharge from taking tamoxifen. I appreciate the ladies in stage IV forum posting about all the nastiness and just how awful it is for we'd never know unless we went through it with someone in real life. We learn and teach each other things by posting not just the good but the bad. If you aren't into it that's fine but to post then go back and delete interrupts the threads because usually someone has responded. If you don't want to post such private things why post at all? You can pm someone you want to know or keep a journal. Sorry but it's maddening seeing something is deleted because someone doesn't want it out there and some people saw it and are posting probably to give support or to offer advice. Jmo of course.
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I did delete almost all my posts on this thread. I was so angry and one day I went through each one and deleted them. For me it was like releasing all the anger I had. I have really benefited by expressing my anger toward my family but deleting them afterwards was like forgiveness.
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Good talks!
I think our comfort, or not, with posting our inner thoughts, feelings, fears and disappointments obviously reflects our world view and how we move through the world.
While I DO agree with NotBroken that it can be bad to leave behind pages and pages of anger aimed at a person (s), I think generalized anger about this disease, railing at the heavens, crying out to whomever will hear, is perfectly valid! For some of us, it keeps us sane.
When I was in college and the professor would ask the class, do you understand, everyone would nod and smile and I'd think I was the only idiot in the room who clearly did NOT understand. Furthermore I was paying for a service. The service of that man at the front of the class to explain to me, in the language of my birth, this concept and to make me understand it. So, since I was the client and he was selling me an education I would put up my hand and say NO! I DO NOT GET WHAT YOU ARE TELLING ME, EXPLAIN IT AGAIN PLEASE. If I needed to ask a question, I did.
Without fail after class people would come to me and say, oh thank god you asked that question because I didn't get it either. Well then why in the hell were you sitting there with your finger up your ass not telling the prof that his explanation was obtuse? If you have something to say, or a question to ask, speak the hell up! And that's how I feel about things like hurting boobs, the mental terror, vaginas that are broken (god save us from broken vaginas!). The pieces of ME that I leave behind in a candid moment of unembarrassed truth is a gift, an offering I leave for another person who is scared and devastated by this diagnosis and the indignities it can bring. We each very much walk this path alone. We are alone at night with our thoughts. While we cannot take the hand of people as they walk here, we can leave a trail of bread crumbs with our words that might pave the way, define a clearer path, walk here, we have walked here before you, we know the going is rough.
NotBroken, do not feel bad about your bad feelings. This is not a contest. I think people come here in a spirit of closing ranks around each other in our imperfection and pain. Leaky vaginas and lost hair are part of that . If you have a situation with a crazy ex who is stalking you, that is a case of personal safety. But as far as being judged for the truths and revelations of self that you leave here, I have seen very, very little judgement and a whole lot of other people who know exactly how we all feel. It's okay to not be at your best. We've all been knocked upside the head and are a little stunned.
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B"H
"Who knows what cells are doing when they try to get the right message if we are bullshitting ourselves and the world."
Absolutely BRILLIANT! the heart of it all!!! thank you !
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Sounds like me and a few others that I have communicated with on this privacy issue are in the minority, and that is ok. I am glad I posted my thoughts and you gave me yours. I sincerely found it interesting to get your perspective. Thanks for sharing.
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I agree that privacy issues are important. When I (rarely) post something personal I often change small details which don't matter in the point of the story, but it would keep someone who knows me from figuring out that it's me.
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Wrenn and Rosabella - I see both account of the possibilities
Yesterday I went back to where I had posted about my frustration and hurt from the actions of DD. I read it all and the only edit I did was deleting the money involved, the rest stayed. Why? Because I did not want to disrupt conversation. Also because I put myself in her shoes when I was venting, I lost my mom, I was there for her in numerous ways and not there enough. If my DD read that and she had the state of mind to feel shame at the way she acted, well, then she will grow. Because that would be a viable emotion and worth changing by doing better. If not, then it will possibly eat at her and she will grow or do differently for another someday and someway.
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Easy for me. Don't facebook. Use email but only vent cancer stuff here and no one knows who I am except anyone I share that with.
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Not really angry - more saddened, feeling a loss. They say depression is anger turned inward. Letting the stuff out some.
crossposting.
I haven't been doing very well physically for a long time. This last month is worsening.
I feel like everyone in my inner circle has stepped back for their own reasons. I know they will come forward again as they get a grip on what they realize is happening.
DS - that I am not doing enough through western medicine to get well. That I should not be spending time on my funeral stuff and organizing accounts. Though believe it, attorney stuff and doctor stuff took my time this month, that and being so sick.
DD - even after she asks how I am and I tell her as clearly as I can she writes in chat that she still doesn't understand how I am and what my condition is. And I wrote, really rough and on a fine line between palliative / hospice at this point but doing the best I can to get well. She has not comented further for two days.
Friend - When I was railing at the wind a few days ago about how I keep hitting the wall on answers and getting help she said.... I really don't want you to get upset with me but I really believe if you accepted Jesus Christ as your Saviour this would all turn around. (I don't want to get into beliefs with anyone, please, or what I am as far as saved or not, it's personal.) But I was really stung that in her mind I was being blackmailed by her higher power. That is the only way I can understand and though I know she meant well, it just stung.
SIL - she is not really my support system but could be. She sits back and says God healed her (though she did all the chemo and mastectomy and radiation they would throw at her) and that is the way it is. So that means in her minds eye that God is choosing not to heal me, I guess. I haven't asked - I don't believe in special favours. But that is my belief.
Hubby - He keeps saying he believe I can still beat this. As he watches me clinging to the side of the cliff. That is a lot of pressure.
Tonight on Scandal the opening moral to the story was "What do people fail to do when they are in crisis?" "Realize they are in crisis."
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sorry to hear bluebird. I think they go between denial because you always think it happens to other families to anger inside which that's when they take a step back for their own sanity. My bro is the only one who knows about me because no way would i stay sane with the comments, advice, and actions i would see. Bro is cool but even though he supports me, there are times he disappears for awhile. He tells me why. He's got his own problems and stress and it becomes to much at times to handle. My dad has health issues too and he's pretty needy. Bro lives close to him so it's on him. We are the only kids.
Some people know the best words to use in communications and some don't, but i bet inside they are all there for you, just need a break at times and don't know how to say it without hurting you so you get array of messages. For me the best support comes from people who are or have been there. Others teally don't know what to say so they say something stupid, not much at all, etc.
As for the religious stuff I give you exhibit A of why I don't care for any religion. They all have this if you aren't with us you won't be saved. I can never believe that if there's a God that he'd single out 1 group. Good people come in all races, religions, etc and that's the key. I've had to mute my bff because she's making me nuts with this accept jesus or you won't be saved.
Stay away from those who upset you. Tell them to take a break from you, it's ok, and come back when they are supportive. This isn't knew to them so they know. It might not be a bad idea to have them attend a bc support group better if it's only stage IV to snap out of it.
Best wishes. I think the worst support for many, not all, is family. You have no energy to deal with it with them then they go back and forth or become dr oz and dr phils. That's why my fam is in the dark and plan to keep it that way even if my stage 3 high risk goes to IV.
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I forgot DB. We met for dinner after my last appt w a tricky oncologist - and forgetful one - and I was spinning. Just had the one option I did not want but maybe needed snatched away and was very upset. DB, DS, Hubby and I. DB had to break the tension by sharing that the Mickey Mouse burger on menu was disconcerting. A joke, but still. Message clear - stop feeling, Diane, stop spinning, we can only handle 2 minutes of this. You go home and do it on your own. One day when this happens I am going to hopefully be able to get up and walk out and go home. Because it hurts.
DS yesterday on phone asked me why there was a therapist involved with the palliative program at hospice. I know she has reached her limit too often it hurts her. I cannot blame her for any of her feelings, she has been by my side since 2011 when this started.
Rosabella, thanks for the input. These days I am leaning hard on you guys, bco is my support group.
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