STEAM ROOM FOR ANGER

pajim

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.

Lita57

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

sas-schatzi

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?

sas-schatzi

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

Lita57

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

Oakmoss

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.

seq24

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.

april485

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!

seq24

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!!

Oakmoss

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.

Oakmoss

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.

seq24

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!

seq24

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!

pupmom

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.

seq24

I was trying to keep this private too, but my husband and a friend decided to make it their business to tell EVERYONE when I specifically asked them not to. I went into Walgreens the other day and had one of the employees come up to me and said "oh, I hear you have cancer" . My friend had been in there and made the announcement to the whole store. Maybe I wouldn't be so sensitive to this stuff if I weren't scared out of my mind!!!!!!

Oakmoss

Seq, I cannot believe what your friends and family are doing to you. Sheesh. I have to say, the majority of people I know have done exactly the right thing, made themselves available to talk more on the phone and they have listened to me. I'm just sorry everyone is making it so much harder for you.

pupmom

seg, that is horrible! My husband would have gotten the what for if he'd done that to me! That said, my ex-husband was the town gossip, and I can imagine him doing it.

april485

Yikes to both of your plights! I would be really angry at my husband for this for sure and he would hear about it nonstop until he had no choice but to apologize and send me lots of flowers! LOL. Hugs to you for enduring stupid comments about cutting off your boobs. I heard that one too...just said, you do it if you think it is such a good thing. Idiots! Yeah, I am old but I like my boobs and if I can keep them then I am gonna. Not to mention the seriousness of the surgery itself! Ugh!!

Here is a great thread if you want a good laugh about the stupid things people have said to cancer patients!

https://community.breastcancer.org/forum/31/topics/755825?page=51#post_2031101

Meow13

Oh yes, my attitude. I'd like to tell my oldest son and husband just where to go. I am sorry if I'm not as easy going as a once was but you know I've been through alot and still am. There comes a point when you start to think about yourself and what you want. I have worked full time outside of my home all my life. Stress at my job that I retired from is now gone. But I cook, clean, garden, plan vacations, and sew for my family. My husband he does household repairs, takes care of our computers and mows our small lawn. I dont need to be reminded to be cheerful and without worry.

Wicked

Said to me about an hour ago by a co-worker about the fact that I'm facing a bi-lateral mastectomy- "Just remember, it's just tissue!" When I told her it was kind of a big deal, she said, "Oh okay, oh okay," over and over like I was being ridiculous.

seq24

Ok, I'll just say it. These people that are saying all this stuff--they are just STUPID!!!! I wonder if they know just how hurtful they are to us that are having to go through this!! Makes me REALLY mad, especially now that I know that I am not the only one that is having to deal with this kind of garbage!!!

Lita57

Oakmoss and Seq: Welcome to the boards, but sorry u have to be here under the circumstances. I totally hear what you're saying. I have had to "unfriend" insensitive bleephole friends for saying, "Why are you so negative? You're not fighting hard enough. It's like you're giving up..."

SHIZ!!! What the eff more do they want me to do??!! I was Dx'd w/ Stage IV with major mets to bones and several internal organs 4 mos ago right from the start. My BC didn't show up on ANY mammogram, only way they could find it was w/a dye-infused CT scan. Too late for me to chop the left boob off cuz the horse is already out of the barn. THERE IS NO CURE FOR STAGE IV. All they can do is try to keep it from spreading and give me "two or three" more years of half-way decent quality of life.

So, with this lovely prognosis in mind, I am getting my affairs in order cuz even tho I'm ambulatory now, I was confined to a walker/wheelchair a few months ago because of the FIVE compression fractures in my spine and spinal cord compression, all thanks to my new 2nd husband, Mr. Cancer. [I did NOT sign up for this arranged marriage!] Because Mr. Cancer is EVERYWHERE, I have to be prepared that things could go south very quickly. My health care provider has already sent me documents for my "end of life" decisions which they want to have on file.

My so-called "friends" keep saying, "But there are new Rx's coming out all the time..." Yeah, maybe, and I've DONE the research, too. If you just have mets to the bones (only), you very well could last another 5-7 years or more. But if you're like me, and have it in your spine, ribs, hips, pelvic bone, in the adjacent muscles AND your bladder, liver, adrenals, kidneys and spots on the pancreas, those survival years decrease. California just passed the "Death with Dignity" act, so you can elect physician-assisted suicide when it becomes intolerable (and believe me, it WILL...I had to watch my mom perish from soft tissue sarcoma cancer when I was in high school, and it was horrible). And my friends are going, "Why are you thinking about that now?"

Again, SHIZ!!! Why wouldn't I think about it??!! I just want to scream at them, "Shut the EFF up! I'd love to see how YOU'D handle a terminal Dx!" If it wasn't for prayer and one or two friends who actually "get it," I'd be on the verge of a nervous breakdown. Even tho I'm fatigued and exhausted from Mr. Cancer's presence, it's hard to sleep. This is NOT how I thought my life would end. I cry at least a couple times a day, not for me, but for the people I will leave behind.

I just handed in my office keys last Friday. VERY hard for me. I loved my job, which I had for 21 years. Fortunately, people at work haven't made asinine comments or asked stupid questions. They basically say, "You're in our thoughts," or "We're praying for you." Thanks. That's all you need to say.

KEEP RANTING, ladies!

seq24

Lita, that is a good one too that I forgot to add to my rant. "you can't be so negative", "you won't get well unless you have a positive attitude", and "if you're going to be so negative, then I don't have anything else to say to you" (that one came from husband!). How can I not be so negative. I've just been hit with a ton of bricks and no matter what anyone says, good or bad, no matter how much they say they are supporting me and no matter how many times they I am right there with you, the bottom line is this" I AM GOING TO BE THE ONE WHO HAS TO SUFFER THROUGH THIS AND I AM THE ONE WHO HAS TO PAY THE CONSEQUENCES OF THIS WHETHER IT BE GOOD OR BAD!! That's what people don't get. Then everyone says, you'd feel better if you just accepted the support people are trying to give you. Which just goes back to the above sentence.

I am very sorry you have this diagnoses. Please be in touch with how things are going for you. Take care.

Lita57

Thanks, seq.

Just realize YOU didn't do anything to deserve this miserable disease. I just read an article in CURE magazine about the sheer "randomness" of cancer. It talks about all the people who smoke and DON'T get cancer (like my dad...he smoked for over 30 years, drank like a fish, and lived to be 85), and then people who NEVER smoked get it anyway. And people like my mom who lived a relatively healthy life and died from cancer at 48.

Anger can be a good thing. It keeps you strong. I am so infuriated by this disease. I 'thought' I did everything right: Didn't drink diet soda, stayed away from bacon and cold cuts (nitrates), drank organic milk, etc. But it seems like our bodies are programmed to betray us eventually. It disturbs me to think I'm being destroyed from the inside out. I'm not angry at God, I'm angry at my unfortunate luck.

leftduetostupidmods

Oh gosh ladies , I feel so bad for what you are going through! If i could hug you right now I'd hold you and let you cry your heart out until there are no more tears.

I'm not Stage IV but I had my share of insensitive comments like that for years. That is the reason why now I have a very very small number of friends. Well no, that is not the reason, the reason is that I didn't pussy-foot and I told them in their face what I thought they should do with their opinion and apparently they didn't like it. Anyway, after my first year of anger in face of insensitive comments started cooling down, I found this youtube video that I would use every time someone would come up with an insensitive comment like that, and I'd play it for them and FORCE them to watch it. It had about the same effect as me rebuking them, honestly, only that this time they couldn't get pissed at me for "being rude" they just got the message better and got ashamed of themselves. Oh well, at least it left me surrounded by REAL friends.

Anyway, this is the video. The lady is wonderful, she had ovarian cancer not breast cancer, and passed away since the video was made, but I think of her often as she was an inspiration for me when I was going through the hell of cancer treatment. Feel free to use it for those all knowledgeable people (sorry you WILL have to go watch it on youtube as the embedding is disabled, just click the video image below and it will take you there)

Oakmoss

Thanks to all of you who responded. It's comforting! Lita, I especially appreciate what you said about how none of us deserved this wretched disease. About three years ago, one of the women I knew through my [now sadly discontinued] horseback riding activities said she had bc, and had had a mastectomy. She was always very fit, health conscious, and herself a doctor. I said something to a friend about how this shocked me, and the friend said, wisely, 'It's a crapshoot.' I used to know someone who had been a professional athlete, and he had the most fearsomely strong constitution. For the most part, he lived on Diet Pepsi, packaged corn muffins, and once in a while, he'd break open a can of tuna and eat that. I saw the ex-athlete out bicycling a few months ago, up a steep mountain road. He's in his early 80s now. I doubt his appalling diet has changed much. I don't draw too many conclusions from this, have never considered imitating him, but I'll just stick with what my riding buddy said about this being largely a crapshoot.

Meow13

Someone told me they saw a poster at their doctor's office saying "Cancer hates healthy bodies". If I saw that I swear to God I'd rip it down and tear it up right in front of the whole office.

Oakmoss

"Cancer hates healthy bodies" -- ?? I don't think I'm an idiot, but honestly, I'm not even sure what the point of that is.

keepsake

Other people: "Don't waste your time worrying about breast cancer. You could be hit by a bus tomorrow. And, you would have wasted so much of your remaining time worrying about breast cancer."

Me: Breast cancer is the bus that hit me.

JJOntario

My fourth biopsy since dx is tomorrow...wire locate ultrasound. Someone said I should be getting use to all this. I'm so angry and so tired. Do you ever get "use to this"??...has life changed so much that it's not supposed to be a big deal? How much are you supposed to just suck up??? I was also asked if I was going back to work afterwards. I booked myself a haircut and pedicure for the afternoon...I dare work to call me!!! My hairdresser won't bat an eye if I show up with an ice pack in my bra. I'm so sick of this...