STEAM ROOM FOR ANGER

thereisnodespair

B"H

Bluebird-DE that is just so so unforgivable and horrific.... in such a serious condition what you deserve full-heartedly is exactlly the opposite of what you received from that doctor...

with you... hugs and prayers....

Anonymous

I had to revisit this for the sake of newbies and those who just don't know this yet. The reason I was screeching in my mind (in the last post I made above) is that this BCO support group gives us knowledge that the MOs do not expect us to gain. Like this - Faslodex can and is given with other treatments. Including other aromatase inhibitors. How does it work? "Faslodex is an estrogen receptor downregulator (ERD). Like tamoxifen, Faslodex works by blocking estrogen receptors. Faslodex sits in the estrogen receptors in breast cells. If Faslodex is in the estrogen receptor, there is no room for estrogen and it can't attach to the cell. If estrogen isn't attached to a breast cell, the cell doesn't receive estrogen's signals to grow and multiply. Faslodex also: reduces the number of estrogen receptors and changes the shape of breast cell estrogen receptors so they don't work as well." from BCO

Here are a few combinations I found on BCO and from a quick Google search.

1. Ibrance, Xgeva and Faslodex.... started at the same time
2. Ibrance/Femara/Faslodex and Xeloda together
3. Faslodex + Pablociclib(Ibrance) treatment combination
4. Afinitor and Faslodex combo
5. Faslodex with Xgeva
6. Faslodex in combination with IBRANCE (palbociclib) or Verzenio (abemaciclib)

This is why we have to know something, anything so we can know when to throw in the towel and move on. Because these doctors are not all on our side. They are in a pocket of time. A financial goal. Mind other places.

Yesterday my palliative care nurse politely suggested he was having a bad day perhaps. I said, not on my time. I am trying to stay alive longer. He had two other appointments and he forgot who I was. What was said. Needs expressed. ALLERGIES !^*#@^^* spoken of in detail and photos shown to him. Not on my time. No bad days allowed, especially at that degree.

Anonymous

btw - at this appt, the 3rd one, he really did not stop messing w his computer once, checking factors of my case I hope. Trying to find out just who I was perhaps. I have never had an MO so busy while I was sitting there. Dr. G checked things to share w me. Dr. K just sat and listened and talked. Dr. D was busy but it was all about answers for me. Last two were temps after my primary MO moved. Dr. B after I couldn't wait for a new solid team at the center - Dr. B had his list of all the doctors I had been to even my DNP and endo and Rheumatologist, what? and was going through that to challenge me about running from one to another. Then Dr. S, last one.

Just saying, I am almost 61, I have had a lot of doctors in my life, I know how they should and could act w a patient.

Trying the primary center I left to see if there is yet a new team to fill Dr G's place. I guess I feel like I just want to go home. Am I starting to not care what happens to me or if I live or die? No. But sooner or later I suppose one would feel that way. Or get up and fight harder.

JANET - yup, I know you know it feels normal. How is it going w your new MO now, after a few months w them?

bcincolorado

Oh Bluebird that just stinks! Doc does have a lot of patients but they sure have your file and should be able to read a chart before they come in to see you to figure out who you are!

jaycee49

I don't really know yet, Bluebird, but thanks for asking. I've only seen her once (the new one) and will see her for the second time on the 28th. That first time, she walked into the exam room, me all in excited anticipation, and asked, "when was your last Pet/CT scan?" I'm screeching in my head, "YOU DIDN'T LOOK?" Obviously not. I said, "I'm not sure exactly. Do you want me to look it up on my phone?" Most doctors don't like you messing with your phone while they're with you but she said yes, if you wouldn't mind. Not a perfect start for her in my eyes but I'm used to it. Isn't everyone? Do some people's MO's actually look at their charts BEFORE entering the exam room? Even though I will be incredibly jealous, please tell me they do. This new one wants to do Pet/CT every three months, strictly by the book. I'd rather wait maybe four months to reduce anxiety and not give my drug insurance an excuse to stop paying for Ibrance. I assume that with any little abnormality, they will cut me off. I'm going to be open minded about this new doc. Give her a few more visits. DH assumes I'm not going to like her so I'm holding judgement. I WANT to like her. At least I want her to be like a PCP I had once who just did whatever I wanted. That's the ticket, right?

I have noticed that doctors tend to say things however you will be least likely to understand. My gastro once said something was autonomic because he didn't think I would know what that meant. Guess what? I did. My MO's have always used generic names of drugs when discussing them. I can memorize generic names of drugs with the best of them but why? Brand names are always easier to remember and say. Why add another level of confusion. I'm confused enough. So, I'm going to ask her if we can wait four months to do the next scan and also can we use brand names to discuss drugs. I want to know what she has in mind for me next. I think she used the generic name of Aromisin with whatever (probably Afinitor, aren't those taken together?) but I'm not sure.

Just had a wonderful lunch with my old lady friends, none of whom can hear much. Lots of yelling in the middle of a crowded restaurant. So fun, although I am hoarse as a result. I can rest my voice now. No one is paying attention here anyway.

runor

I am paying attention.

Micmel

as I am as well. I don’t follow many threads. But this is one I do! Letting stuff out is so much needed ! Hugs Jaycee. Glad you had a good lunch with friends. ~M~

jaycee49

When I said "here," I didn't mean here, the forum. I meant here, like here home. Well, the dog pays attention but only when related to food or petting. DH pays attention but only when related to his guitars or motorcycles. He might like the petting part, too, but a different kind than the dog.

I know you guys pay attention. Plus, how helpful it is to write our miseries out, even if no one is paying attention.

Jumpship

New young OB was trying to convince me to get all my lady parts removed so I wouldn't have to worry about cancer in those parts. But if I don't have breasts I can still get breast cancer so that's not true.

Then I said-if I have no breasts and no lady parts, what makes me a woman? As I cry. You-she said. I'm thinking if that's true people like Bruce/Caitlin wouldn't bother with adding and subtracting parts. Parts are part of who we are. It's part of who I am -if that's not true for her I wish that she had just acknowledged it was true for me. I didn't get implants for a function-just to look like a wiman

Lula73

jump ship- so sorry you're having a difficult time right now. Did the new GYN say why she thought you are at higher risk for getting cancer in your lady parts? Maybe that would help. You are right that you can have your breasts removed and still get breast cancer. The difference between breasts and the other lady parts is that the breasts are tissue and the other lady parts are organs. When they remove the organs they get it all. When you remove tissue there is still the possibility that some very tiny amount of tissue was left behind. None of this fair, that’s for sure!

mistyeyes

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.

Beatmon

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.

Jumpship

Thank you Beat, Misty and Lula. I think it's another example of being in front of an expert but not being heard. I meet a new doc soon

Anonymous

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.

sas-schatzi

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.

7of9

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!

NotBrokenJustBent

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?

Peregrinelady

Many people have deleted negative posts. Is that something you could do? Or are they still somehow accessible?

Micmel

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~

NotBrokenJustBent

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.

runor

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.

NotBrokenJustBent

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?

Artista964

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.

NotBrokenJustBent

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?

Micmel

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~~

mistyeyes

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. 

NotBrokenJustBent

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.

Lita57

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.

NotBrokenJustBent

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.

Anonymous

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.