STEAM ROOM FOR ANGER
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FRAN Bless you, HUGE HUGS...............There is our world and then the outside world and they don't mix. They only mix in this world. I'll share something that happened while you were gone that will make it crystal clear. A newbie posted a couple years(maybe less) ago now on the Angels thread without having any clue what the Angels thread was and how sacred it was --posts "Don't you think you are spending way to much time on this and shouldn't you just move on". (close paraphrase)
Several, me included, came down on her like a ton of bricks.
That's so similar to life outside here. So, until a recent several month foray into the unnamed social network, I have chosen to stay in BCO. It's sane within the insanity.
My tale of woe with my TWIN is we are getting close to not talking for 3 years. We both have had BC, her in 1996 and me in 2009. But BC wasn't the problem. We are polar opposites and I was just tired of the chit. It's hard for the family to understand and in most cases, I refuse to explain the lifelong abuses by her. I always ask for updates on how's she doing, and enjoy hearing she is doing well. But contact is precluded.
DS's wedding is next Feb, my guess is she won't come. But if she does, I will invite her to stay. But that will not cause a resumption in contact. She's too mercurial.
Fran sending a PM
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Fran - There are crappy people in every family. I gotta 'em in mine, too. Some people think the world just revolves around them. When you get sick, they just think, well, too bad for you. It sucks when you pretty much have to go it alone. Sending you prayers.
Charlene - GOOD FOR YOU throwing those damn ribbons out. There was a "Relay For Life" at my daughter's old high school, on Saturday and I didn't feel like going. I'm just not ready for any of that yet. I don't feel like a so-called "survivor". Don't get me wrong, I'm happy and thrilled for everyone's successes. But I was just diagnosed w/St IV in April of this year, with mets to spine, ribs, pelvic and hip bones, adrenals, bladder, kidney, and liver. They call these relays "Celebrations of Life," but this ain't much of a life for me.
I know survival rates for JUST bone mets are very encouraging, but when it spreads to a bunch of internal organs, too (along with all the bones), survival rates can change.
Love you guys...you're keeping me going.
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SAS the drug is Silenor not sure about my spelling I forgot to check it before I left this morning. Feeling much calmer today had a long chat with my nurse navigator surgery is on Thursday and will be glad to get that part over with. Thanks for your help
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Arista, people post the same kind of things here. And I'm talking about people with bc, sometimes advanced. And, yes, it is unbelievable.
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Arista....that crap really pisses me off. The bald head cap is ridiculous, seriously...if someone offered to wear that "for me" I'd ask them not to.
IDK, I'm in a weird place today. Somewhere between angry and ready for change. I decided to take a break from femara, just a few days to see if that helped my ever increasing pains. I was barely able to walk in the mornings and the pain was just becoming awful, so I haven't taken for a few days and I'm feeling better. Then I start doing some reading and came across a blog about BC and the writer had stopped her femara for an extended period and she ended up with mets. *sigh*
Fear!!!! Anger!!! There is no winning it seems sometimes
But then I thought, I'm gonna go for a short walk this morning and see if all this talk of exercising will help is actually true. I'm tired of feeling tired, ya know? I'm 41 and I feel so much older, somethings gotta give here.
I'm rambling, just need to get it out. thx
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Exercise helps. The hardest part is to get yourself up and doing it.
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Well, I did it....took a 15minute break and walked around the block. I'm not gonna lie, it was fairly brutal...how pathetic is that? But I'm not feeling as achey as I'm sitting here working, so who know. Thanks Seachain
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Diagnosed with MSSA (not MRSA). Waiting for final results of culture. I've had nothing but trouble since the last day of radiation. My burns basically exploded, and RO didn't exactly take it as seriously as he should. Until I spiked a 103.7 fever, that is. Then things got rolling. Meanwhile...oh, meanwhile...
My husky Ryder is sick. He's thrown up nine times today (seven in the last hour+). He'd be at the doggie ER if I weren't here alone, with my autistic son. So I have to wait until tomorrow to get everybody's best buddy and my loyal companion checked out. I feel like I'm failing him, paying back his months and months of devotion with...nothing.
I must have been spectacularly awful in another life. I need to research dictators, see if I any of them had my eyes.
Sigh. That's my wild boy last Christmas.
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I never thought I would still be on these boards...not because they aren't great but because I was supposed to be "done" with BC by now and I honestly believed it!!
I'm having yet another biopsy next week. I grow cysts...lovely ones that are never simple. When I do grow a simple cysts they grow so big they need a great big sucky needle to drain them. I have a nice little golf ball sore lump in my hysterectomy incision that needs to get checked but I feel guilty booking another doctor appointment and missing more time off work as I just went back. Speaking of hysterectomies...I had no clue that they were so common after BC.
I'm tired of everyone thinking I should be done all this crap...I'm tired of my DH's long face at every appt...I'm tired of my mother in law saying I should have just cut them off, I'm tired but at the same time glad that the staff at the hospital know me. I'm angry for feeling guilty about stuff I can't control. I use to love my job...but with all this craziness I don't care about it anymore. I'm so done with holding my breath and waiting for test results. But I put on my make up and smile...and when I pass you and you ask "How are you today?"... I say "I'm great!
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Rory, what a handsome boy Ryder is! 💗
Have you called the after hours vet to see if they have any suggestions to make Ryder as comfortable as possible till you can bring him in? That's an awful lot of vomiting in that short a time. I don't want to frighten you but with all that vomiting, he can get severely dehydrated very quickly and things can go downhill really quickly from there. If he doesn't stop vomiting or becomes lethargic, you probably need to grab your son and just head for the vet - not waiting till morning.
Good luck! So sorry you have to deal with so many things at once :-(
Let us know what's going on with your doggie!
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Rory, I echo and agree w/what Wildflower said. That's a LOT of vomiting. Please call an after hours vet. If he's not holding down water, it can get critical real fast.
Sending prayers for ALL of you.
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Ya know when I was young I pictured myself as having it "all together" at my age (47). Never thought that I would be dealing with the crap I'm dealing with today.
This may be the big wake up call I needed because I am so angry, hurt and pissed off at those who I thought were my friends. I have bent over backwards for any friend who was in need, dropping everything to rush to their side, cooking meals, cleaning, donating, giving money, lending an ear, listening for hours to their problems, (that one is still going on sometimes and I'm putting a stop to it).
I'm even seeing my husband in a new light...the constant guilting, manipulation, "you're a burden" attitude, telling me how I should feel, think. He constantly puts the screws to me about money, so I'm so stressed I can't eat or sleep. It's all about my medical bills. Now I find out he sneaks and buys nonsense stuff behind my back. But I have to ask to buy some groceries???
I an't wait til this next surgery is done so I can find a job! I hate being stuck in this limbo.
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Sorry, haven't read, on a fly by mission. I'm reposting this for your review of the study John posted.
A few seconds ago sas-schatzi wrote:
Folks I think John's link should be posted around in the threads you frequent.
1.Reason is most here have sleep problems.
2. It is a naturally occurring in the body
3. we need to use any thing that gives us an edge.
My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.
I keep wondering if there was "something" I was doing that was helping?
Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.
We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.
John reposting on my usual threads. Thanks for all the research you do.
18 hours ago JohnSmith wrote:
New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest
TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells0 -
I don't post here often, but it's not because I'm not angry and often want to vent. It's mostly because I'm afraid to see the amount of anger that come out in my posts. Like "do I sound this way in real life, or just on these boards because I know you all are a safe audience and won't criticize me." ??!?!
I'm on year three of Stage IV, constant treatment. Tired of CMF treatment and tired that I'm so freakin' unreliable when it comes to making plans with other people. I've become "reliably unreliable". Hardly can count on me for a simple lunch. And, I'm going to start having to D/O & P/U my step-daughter in January every other week, for school, when my husband goes to college.
Several other posters have mentioned they were nurses and missed their careers. Me too. I was a 7 year RN, pursuing extra qualifications in Adult Critical Care, when I was diagnosed. At first, at age 40, everyone was there for me. Now, seems like the interest or concern is gone and it's up to just my husband and a close friend to help get me to appointments. I can't drive anymore. Mostly I'm just disappointed by my family, my sister, in particular. They don't understand that I'm lonely at home, low WBC keep me from going out much, and their petty squabbles I'm not interested in taking sides in. I'm annoys that my life has become one doctor treatment after another. Is it okay to scream at someone "Jesus! You're as toxic as cancer?!?!"
I know none of my problems are any different than any of yours, but thank you for letting me vent. Please continue to vent to us too. Looks like we're all in this together.
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(((((((akshelley)))) You have a right to be angry! No one deserves this disgusting disease. No. One. Especially not a young woman like you are and particularly not Stage IV.
You vent as much as you need to. We are here to listen.
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Yes, akshelley, vent away.
I have extensive bone mets in spine (with FIVE compression fractures), mets in hips, pelvis, ribs, mets in liver, pancreas, bladder, adrenals, kidneys. And I was just Dx'd four mos ago! I KNOW it's gonna get worse. I'm in pain, but I'm managing it w/cannabis. I get what you said about not being able to make plans or be "reliable" as I don't know from day to day how I'm gonna feel - or how Mr. Colon is going to feel. I have two new spouses: Mr. S.IV Cancer and Mr. Toilet Bowl. It's an arranged polygamous marriage I didn't sign up for.
You have friends here even when you're lonely.
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I am so sad and so angry I can't stand it.
A college friend (we were in the choir together) sadly died of MBC about two years ago. I hadn't known she was sick until close to the end.
Last night I received word that her husband committed suicide this week. This disease claims yet another victim. He somehow couldn't live without her. That's all so sad. What makes me so angry is he left three children!! Oldest is maybe 14. [They are moving in with a good friend -- word is they will be OK].
His friends are devastated that they didn't realize he was in this much pain. They're wondering what they missed; what they could have done. I guess the answer is nothing.
I'm not really angry at him (though I sort of am -- he left his kids!!!) - guess I'm just angry at the world. It's just so wrong. They were both really great people.
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Pajim: This is absolutely devastating! What can I say?
We send prayers your way and to the children who have now lost BOTH parents. I just pray this doesn't eff them up too much mentally.
My dad was pretty low when my mom passed after a grueling battle with St IV soft tissue sarcoma (a rare form of cancer). Three of my bros. were already out of the house, and it was just my youngest bro and me at home (I was in high school when she passed). It was awful. I feel for those dear children. I'm actually crying a bit because all the miserable memories are flooding back. Gotta let it go...I have my OWN battle w/ St IV to deal with now.
Hugs, L
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Shelley, getting the anger out is what this thread is all about. Let it fly. Anything goes here.
Pajim, so, sad, so sad........dispare is the worst. so sad.............
Lita, to be so extensive with mets, my question may seem out there. First I will qualify why I'm asking. I have post polio Life long pain just about everywhere. Many in the 60 and above group(pre-vaccine) may have had mild polio that was never dx'd. Only one in a hundred had paralytic symptoms or even muscle weakness. Most only had mild flu like symptoms. The question posed by the greatest researcher in Post Polio around 1980 was "Science/ medicine had no clue if there was any long term consequence to even mild exposure to polio?"
Concurrent to his research in the 1970's, fibromyalgia was recognized, but officially wasn't looked at seriously till the late 1990's. Prior to that it was considered psychosomatic. It, also, has pain all over, but has to have at least 11 of the 18 tender points. With the PP I had all 18. Went to a new level with the stupid AI's.
Anywhooses, did you have system wide pain before your dx?
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Hi folks, check in here at Bestbird's thread she has several positive links about Melatonin.
https://community.breastcancer.org/forum/8/topics/831507?page=2#post_4789872
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Sas, I did not have system-wide pain b4 Dx. I also received the polio vaccine when I was about 5 yrs old. (I'm 57.5 now)
Very interesting...I wonder if fibromyalgia can be linked to earlier vaccines? You never know. Everything can have side effects, some of which may not kick in for years.
L
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Hello everyone, I'm a relative newbie, having been diagnosed in July. I am hoping I will adjust as I get used to this and my treatment moves forward (lumpectomies next week). At times I feel tremendous sadness and anger, and I have a specific gripe: people who tell me what my attitude needs to be. I think this is so obnoxious and condescending, and have already told one friend I didn't like it -- she's now stopped talking to me. I just really hate this approach and thankfully, none of my other good friends have done this. Why does anyone think a whole, living human being has or should have just one attitude, anyway? My state of mind and heart shift constantly, all day, every day. I often feel joy and sadness, hope and fear, more or less at the same time -- certainly in very quick succession. And I'm doing the best I can, for heaven's sake.
Thanks to anyone who read this. Mini-rant over.
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Oakmoss, I am new here too and this is my first post on this particular board. I could have written your post! I am experiencing the same issues. I am sick of people trying to tell me how I should feel and how I should act, including my closest family. I am tired of the comments I get when I have a meltdown (which is often). Things like "you'll be fine" (maybe not), "the time will just fly by" (sure it will), "this is just a small speedbump in your life" (have it in your life and see how small it seems), "you should be happy, it could be worse" (it seems pretty bad to me), "if you lose your hair, remember, it's just hair and it'll grow back" (but it's MY hair and its attached to MY head and I don't want to lose it!), or "you'd be a lot better off if you'd just get counseling and antidepressants" (that came up yesterday). My emotions are the same as yours since I was diagnosed on July 22. I had surgery 2 weeks ago and found out yesterday that I am now facing 5 months of chemo. That is terrifying to me. I, like you, have experienced the full range of emotions although I am in usually in a constant state of tears. I just read a book over the weekend of how to mentally deal with a diagnosis of breast cancer and there was a whole chapter called Stupid People about this exact topic. It said that most people are well meaning and just don't know what to say and that when they say something irritating, we should just forgive them. I'm not that easy to forgive for something that is very hurtful to me, such as these kind of comments, as I am sure you can relate. When I told everyone last night about the impending chemo I get this, "you will just have to get used to things being different in your life", "I'm sure you wont have any side effects", "Ive known so many people who have gone through this and they were just fine through it all" and "I don't know what you're so upset about, I must have done something to make you this way". Stuff like that really irritates me. I told my family that for once in my life this is all about me and taking care of me, not any of them, and I should have every right to deal with this in my own way which doesn't involve jumping for joy, running around with a fake smile on my face, or pretending that nothing is wrong. Oh, and I was also criticized for coming to these boards for support when I should be going to a "real support group" . I instantly become a puddle of mush when I have to talk about this face to face with someone and I love these boards and everyone on them. Sorry for the rant but I'm in the same boat as you and completely understand where you're coming from. Please be in touch.
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seq24 and oakmoss, rant away! You have every right to your feelings - every last one of them! Shame on anyone who tells you differently. They should listen to your concerns and just hug you and tell you they are there for you. Period. Hugs!
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Thanks April,
This has been my biggest complaint through all of this! People telling me how I should be feeling and acting and the attitude I should have. I'm scared (really scared), I'm angry, I'm worried and a whole bunch of other things and not once have I felt happy or thankful for this like some people think. Unfortunately the worst ones are my husband and one other close family member. They both chewed me out big time over the weekend for being upset that this is happening. I always get comments to the effect of "well, if it were me..............." . Right, see how they would deal with it. I don't care what they would do if it were them, because it's NOT! Husband is the worst. He missed 3 weeks of work once because he had a hoarse voice. This would mean at least 10 years if he were the one dealing with this. So glad I found a place to vent!!!! Thank you!!
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Seq, I'm sorry for all those incredibly thick, utterly unhelpful remarks coming your way. I've heard everything from people questioning my decision to try lumpectomy and radiation ('You're old, you don't need your breasts anymore, just chop 'em off') to one friend's own favorite little mantra, 'Stay curious -- you never know what will happen next in life'. Honestly, the first was so outrageous I just shook my head. It's curious, really, not only what gets under your skin, but sometimes, what doesn't. It was the helpful maxim to 'stay curious' that really did get to me. My friend just loves this little saying, which reminds her not to shut down when life gets disappointing or scary. I've told her before that I don't like it as advice for me. I even explained, thoroughly and clearly, why I didn't. So when, after my bc diagnosis, she said, 'You're going to want to hit me when I say this -- but just, stay curious!' I was certainly mad. I asked her why she would preface anything, to anyone, with 'you're going to want to hit me when I say this' and that was really the end. She said I was impossible, that she had to walk on eggs around me, that I don't appreciate what a true friend she is, and I've not heard from her in days. I'm hoping that now having barfed out this story here, I'll be able to let it go.
I've never found forgiveness to be as simple as just deciding to forgive. If only it were that easy! And they are giving you a lot of material -- those comments are classic examples of exactly what not to say. Really clumsy and obtuse.
I've looked for peer support online twice before, in other matters, and it was incredibly important to have it. All the individuals were real, just somewhere at a computer or phone.
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April, thank you! I was even a little embarrassed to be kvetching, but I also know I need to get this out. We're all carrying enough without simmering resentments on top of it.
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Oakmoss OMG! I can't believe she said that! Exactly what NOT to say. I am just sick of people being insensitive to those of us that just had a ton of bricks dumped on us. I too had a lumpectomy and have been criticized for not "chopping them off" too. Next time I hear it I'm going to say "why don't you go chop yours off and see how you feel". Grrrrrrr! So glad I found someone who is just as irritated as me at the rudeness and ignorance of so many people who are supposed to be there to support us. In my case, it's those who should be my biggest supporters who are causing me the most aggravation!
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Oh here's a good one I just had to share! I just heard from a friend who asked how I was doing. I told her about the 20 weeks of chemo I am now facing and here is what she said "well just be glad that you know you have 20 more weeks to live". What is that supposed to mean!! I am ticked! Just one more inconsiderate comment to add to the list! Now that is upsetting!
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I didn't tell anybody, except immediate family, meaning my husband and children, about my cancer until long after treatment. Now I am glad, cause I would have probably lost a lot of friends.
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