STEAM ROOM FOR ANGER

wrenn

I used to question angry outbursts and ask myself how I would feel if my daughter saw it and I realized that I want her to know that all emotions are valid and expressing them is a sign of good mental health as long as you aren't hurting anyone. I don't like confrontation as much as I like clarification so I sometimes ask hard questions of family members. There can be awkward moments but they pass. I don't want her to guess how I am feeling. She will know because I am direct even if it is sometimes jarring. If she develops breast cancer or goes through trying times I want her to be herself. I think our bodies know when something is off when we are trying to not feel something because it might make us or others uncomfortable. Who knows what cells are doing when they try to get the right message if we are bullshitting ourselves and the world.

Artista964

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.

wrenn

I heard somewhere (hopefully not here and am repeating something universally known....shitty memory) that cancer was the disease of wisdom because when we are diagnosed we automatically think "death" and no matter what the prognosis or outcome or attitude it makes us think or philosophize and prioritize. I still say many things I should have held back on but as far as the conversation about being seen on the internet saying/doing things that shame us I want to go out as authentically as possible to show my daughter that 'everything' is ok.

I might have had a different take on it had my daughter been like me. She is a much nicer person so no worries about her doing anything to be ashamed of.

Meow13

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.

runor

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.

thereisnodespair

B"H

wrenn

"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 !

NotBrokenJustBent

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.

Janett2014

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.

Anonymous

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.

wrenn

My perspective might come from knowing my daughter wouldn't be tracking me down. Being a mother got me used to the idea that no one is interested in what I have to say. :-)

It might also come from me being very old and realizing that people are going to think what they want about you.

bcincolorado

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.

Anonymous

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."

Artista964

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.

Anonymous

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.

jaycee49

Fortunately, I have very few people to deal with. DH just ignores all. DS, same. My sister is the only one who gets it. She has had several friends die from cancer and our other sister did, too. That was long ago. I have no wisdom on this topic. Right after I read your post (in both places), I said to myself, "I would just do this and that." Like tell them what idiots they are being. But I could do that now and I don't. Why not? DH can't even remember when my appointments are. I told him the day before my last MO appt and he went to walk the dog that day. He came back to me gone. He was pissed because, he said, "what if the garage door didn't go up." I told you YESTERDAY about this appt. That is just too far for me to travel to where he is. Pet scan results vs garage door. Escapism extraordinaire.

bcincolorado

I have found I don't talk to family about cancer and the fears at all. No one gets it if they have not lived it themselves.

NotBrokenJustBent

I know this has been said before but it still pisses me off. I have had the TV on much today as I cleaned and organized and if I see another Ibrance commercial I am gonna slam my TV across the room. Seriously, given the amount of advertising they spend on this drug no wonder it is extremely expensive and unaffordable to many. My thoughts.... if an MO never heard of Ibrance by now and it is something you have to call your doctor's attention to after being dx'ed with stage 4, I would worry. They run these commercials constantly all day and night and it disgusts me. This is what is wrong with our healthcare system. I see no point in this useless waste of money and I find it obtrusive just when I am trying to get my mind off of BC, if just for a little while but no.... every frickin hour the commercial runs. WE GET IT ALREADY!

Dianarose

Not broken- I feel the same way. Trying to keep my shit together and watch tv then the dam Ibrance commercials! Plus they don’t tell the real picture or the costs. Plus how many of us failed miserably on it. I wish they would ban drug companies from advertising. They are in every magazine as well. Maybe we should all write a letter to the drug company.

NotBrokenJustBent

Ugh... first we had Julie and now we have Alice. Guessing Julie is not doing so good on Ibrance and so now we have a new chickie in her happy place and "new normal". I seriously hate these commercials. Save the money on advertising and drop the price. I find it all very offensive.

NotBrokenJustBent

Pfizer, save the money and put it into research. We get the message already and hell, the MOs better well have heard of you by now. I would think you stage 4 people would be even more incensed by this than I. Ticks me off, this foolish waste of money.

Done with my rant but oh lordy, it is this constant indoctrination day and night and it denies reason. So pathetically wasteful.

Sara536

It makes me suspect all cancer drugs and all MO’s. I suppose that is irrational but so many times I have had doctors (for other health problems) just reach into a drawer and give me a handful of free samples that they got from a drug rep. It’s an easy way to get patients started on an expensive drug that offers perks to prescribers. Too difficult to start out with a tried and true drug that costs only pennies?

Dianarose

My niece was married to a doctor and he got many perks from the drug companies from prescribing their drugs including trips around the world. Makes me sick

NotBrokenJustBent

I still remember with my first born... every sniffle went on to be an ear infection and he was always put on augmentin which was a very expensive drug at the time and we went without much to afford. Finally after years, I asked the pediatrician if there was a cheaper drug because we just couldn't afford it anymore. When I told him how much it cost even with excellent insurance he was horrified and thereafter my son was on amoxicillin at $5 a pop.

Ibrance however is even crueler being a life saving drug and the fact that many cannot afford it is disgraceful. A Canadian friend was recently denied but now her doctor has found a program for her. I also understand that Ibrance is available thru Pfizer for those who cannot afford it but I am confident that price is being passed on to those that can afford, willing to pay, or pass it on to those with insurance. I have a huge problem with this.

catlady44

Bluebird, thank you for your response to my post! It's nice to be understood. Btw, I was a voice major in college and have sung for decades so if you want any tips, I can try to help. Cancer steals everything!

Micmel

wow that is so truthful.... Cancer does steal everything! That’s pretty shitty, that we face that everyday. What a crap deal we’ve all been dealt. Someday it still doesn’t seem real. Where did I make a wrong turn into someone else’s life ? I never did read maps too good. 😕 ~M~

Lita57

I just had to give myself a laugh today....no, my anal/rectal incontinence hasn't improved since my lower back rads.

Mr. Cancer has STOLEN my asshole and hid it somewhere because I literally can't feel it anymore. (Gosh....it's got to be around here somewhere. Where the dickens did Mr. Cancer put it?)

The poop just slithers right out. I still have to wear Depends, and when it gets really bad....whip out the plastic pants.

L

LoriCA

Lita honey I just want to wrap you in a big hug and cry with you. I've started having the same problem for 3 months ago. It gets so bad that I've told my husband a few times that I wish I had just died when they thought I would instead of going through this. Not only is it physical hell (mine has been every 15-20 minutes, all day long, for weeks at a time), it is the most humiliating and dignity-robbing thing I've ever gone through. My parents want to fly out to visit me (before I go) and I had to beg them not to just yet. I can't stand being around myself, let alone anyone else. I haven't been able to leave the house in months and I just make up excuses to people because it's TMI.

I was scared to death that the cancer had spread to my colon or elsewhere along my GI tract, but my scan showed no sign of that. Trying to convince my doctor that it's due to the Taxol - uncontrollable explosive diarrhea has been starting within 24 hours of each infusion the last four times, and each time it's been more severe and has lasted longer (now 3+ weeks before it starts to slow down,and I'm supposed to get it every 3 weeks). My MO agreed to skip the Taxol last week against his better judgement and I've been much better this week finally, I needed a break emotionally, but I still have a few monthly doses to go and I don't know how the heck I'm going to psyche myself up for a few more months of this. Each time it gets worse and I'm afraid it's doing permanent damage. I'm scared to death that this is how I'm going to spend the rest of my life, however long I have left, just sitting here pooping on myself all day long.

Have been trying to think of ways to design a comfortable reclining lounge chair with a toilet seat/bowl built in so I don't have to run to the bathroom every 10 minutes when I'm too exhausted to move. Then I I could cut out the bottom of some pants and just sit there and watch mindless TV while pooping all day long. I'm tired of cleaning up after myself and doing laundry 5 times a day.

If you get a chance, would you please PM me a link to the plastic pants you've found. Doesn't look like Depends is enough for me and the only thing I've found so far is adult diapers, which I haven't been able to convince myself to break down and buy.

I'm glad you're able joke about it, I'm able to joke about most of what I'm going through but this one still has me at the mortified stage. Sending you much love and sympathy!

Micmel

LoriCA~I have no words other than to say I truly hate cancer. I have never hated anything more ever. It ruins everything in its path and pays no mind in the wreckage it leaves behind. We fight because we have no choice. But what happens when we have had enough of fighting??? We can't just snap our fingers and be done with the battle. It goes on and on and on..... we don't get to pull our plug when we have had enough. We can't even have that control over our own disease to decide when we want to go. We have to go onto suffer, but our minds still are clear and sharp as a tack somedays. I'm sorry so very sorry that you're having this happen to you. It breaks my heart in two.. may you find some relief. Maybe with another treatment ? Anything...... to help..

Lita~ I adore you darling your spirit soars everyday. I think you're one of the most amazing women I have ever known. Apparently Lori in Ca is pretty special too. Many thoughts of support for both of you ! Much love

~ M~

chronicpain

Micmel, I do not agree that we have lost the power to say "enough fighting." We certainly cannot snap our fingers, but even out here in gun-control obsessed CA, most people can figure out a way to kill themselves if they are determined, with a gun or drugs or driving their car off a cliff or otherwise, but it is remarkable, and encouraging, that they choose not to, even when suffering greatly physically and emotionally.

So far, I have been told and read that I have a "good" type of cancer, but since diagnosed at 63 I derive great comfort knowing that if the "10% chance of progression to Stage IV within 10 years" chance happens, AND I cannot tolerate the treatment despite best efforts to ameliorate side effects, my 357 Magnum and/or enough narcotics to do myself in are in my safe waiting for me to say when.

I do not know how it will play out with me (I have significant autoimmune problems, so it is unclear how those will change the stats), but I do know that people like you and Lita and others can, and do, endure horrible suffering but still choose to cling to life because you have hope, independent of whether you believe in a higher power or not, and independent of whether or not you believe medical science will suddenly find a cure to totally heal you. You understand that where there is life, there is hope, even though you are legitimately mad as hell that you feel cheated of ability to grow old and senile and die in a nursing home like so many other people do these days after living for decades watching kids, grandkids, and even great-grandkids grow up, cancer-free.

Until the BC diagnosis, for several years I already worried that my pain and quality of life would at some point get so bad that life would become not worth living, especially when the central government apparatus launched its "opioids are bad for you so we will unilaterally deprive you of them" campaign a few years ago, which continues unabated, so I am already unfortunately experienced in dealing with suffering but know that although I may not be totally in control of the BC and whether it will progress, there is a lot I can still control. This includes not just having a back-up stash to end things, but also repeatedly telling DH, and writing down instructions, that should I lose mental capacity and things are looking really bad for chances to regain my mentation, as my durable power of attorney for health care he should say NO to aggressive procedures and medical heroics. Right now, what makes me most worried, is that despite my talking to him, I am not sure he would have the spine to say "enough", but I will continue to work on him.

lightseeker

I don't know if it's "hope" - dying seems like it's gonna be fucking scary. I don't wanna die.

Eve