STEAM ROOM FOR ANGER

NotBrokenJustBent

Marijen, I did not know that. Too late now because I shut down the email account but now I know going forward. I am pissed about the invasion and all my lost contacts. Going forward I just won't get involved in anything. And here I thought I was doing a good thing and even thought I was making a small difference. Never again! Reminds me when I use to give much to charities and then I was innovated with tons of junk mail and numerous phone calls, usually during the dinner hour. You sell my personal info and you get nothing from me going forward.

LoriCA

Tough lesson to learn the hard way - do NOT click on anything posted to Facebook unless you first verify that the url leads to a valid site that you are comfortable giving your personal information to, which is almost never. All of that clickbait crap is there just to grab your personal info, and those "What is your Disney Princess" name quizzes ask you to give out the answers to the most common security questions (street you grew up on, first pet's name, etc.) so someone can hack your other accounts. If you see something that interests you on Facebook (such as the petition you signed), verify it independently off Facebook first because it's usually something completely made up that has been circulating for many years.

The whole Cambridge Analytica nightmare going now, which caused Zuckerberg to be called in to testify about Facebook's privacy practices, was about a survey people completed that gave all of their contacts/friends info to the survey company, who then sold it. So even if you are careful about what you click and what you share, one of your friends could give away your personal info without your knowledge. Hopefully with all of the eyes on it now, they will start cleaning up some of the more nefarious practices.

Sorry about your e-mail account NotBroken, that really sucks that Facebook has enabled these companies to get away with this for so long.

vampeyes

Angry at Cancer for disrupting my life. Angry at Tamoxifen for the SEs. Angry at Radiation for the fatigue. Frustrated with the fatigue, shortness of breath, and chest pain. Frustrated with people telling me it could be worse, that there is no where to vent about how shitty I feel. I do my best to listen to others, help them, but when I need a little comfort from them I get "it could have been worse" or I am not a doctor so I don't know. I will admit I got damn lucky with my BC catching it early, but it doesn't mean that the SEs that I am dealing with are any less than someone else's. Everyone has their own issue, sometimes it's nice to just have supportive caring friends.

Dianarose

Got a bill from the hospital for changing out my naphostomy tubes. There is a charge for almost 21k for drugs. I don’t get any drugs! Not even a dam Tylenol. Now I have to take my time and Call to straighten out someone else’s mistake! Ticks me off!!

smwusaf

this whole BC thing sucks. first, I was shocked, the hospital system gave me a nurse navigator to help explain things, guide me through it all, make sure I'm scheduled to see the different doctors, etc. I was oblivious about what to do, I'd never even had surgery before. I assumed that since they new my insurance they wouldn't send me to physicians not in my network. OMG. The radiation facility was in-network, none of the Drs were. You don't get a bill till it's all over, the facility was covered, the $10,000 Dr bill, was not. then, i start on my AI and am having multiple issues (including being depressed about this huge bill) so I'm referred to an integrative Dr. I love her but just got my bill today, apparently she isn't in network either BUT all the tests and xrays she did were paid.... WTF?

I feel like I've taken crazy pills. I just want to call everyone and cancel all future appointments and tell them "To hell with it!"

I won't though, I need to fight this cancer but dang it, I shouldn't have to fight my insurance too.

Thank you for allowing me to rant.

Meow13

I am feeling angry and sad. I was never injured or sick before, I pretty much sailed thru breast cancer and surgery back in minimal time. But I feel so worthless, I fell running through the kitchen chasing after one of my cats. She was starting to vomit and I wanted to get to her before she reached my oriental rug. Bang I went down and really bruised my foot, side, ribs, knee and arm. I am in agony. I feel like crying my family is upset with me and I want to get better ASAP to get back to feeling useful. My husband constantly reminds me of the fact he does more household work than I do. I used to do everything with 2 kids and a 40 hour a week job. Now I am just getting by and retired. I think it is getting old that really sucks plus going thru cancer really sucks.

I have been saving 3 opiod type pain relievers and I just took one. I tried tylenol and advil did nothing.

But, there is good news the oriental rug was spared. Ahhhhh.

Egads007

Meow - OUCH! I hope the pain medicine kicks in soon, so sorry!

Just a thought on the DH and housework situation, multiply the years you did it all while working a 40/wk job and raising kids then tell DH he has some catching up to do yet!

Feet up girl and get yourself some well deserved rest. Hope you feel better soon!

Meow13

yes I finally got relief. Finished cleaning the bathrooms going to watch tv now.

ChelseaSculler

I'm just so irritated at having my concerns waved away by doctors. I just want them to acknowledge that I have concerns and that they are reasonable to have. Yes, I'm "lucky" enough to have old lady cancer, and yes, standard of care and all, but I feel like I'm on a conveyer belt from surgery to radiation to hormone therapy and no one will address my concerns about side effects and possibility of over-treatment. At this point, I'd even be happy to have someone say "less than X% of patients have lasting side effects"—even if X were to be 1 because I just can't believe anyone who says there's NEVER any lasting SE. Or even if it were "because of your type/location/whatever, there's no reason to expect SE". I know there are risks, they know there are risks, why won't they even acknowledge that some people have issues? It makes me want to rebel against the standard because it feels like they aren't looking at me, just generic patient. And I do get that some people don't want to know all the dirty details, but I'm saying I do, so glossing over the details just pisses me off.

And then I just take the treatment and hate myself for not pushing things further.

This just sucks.

Lita57

CURE magazine had an article about PTSD in cancer patients.

THAT'S A LASTING SE.

Cancer takes a major emotional toll, and the more cycles and diff Tx's you have, the bigger the cumulative emotional and physical toll it takes. My digestive tract WILL NEVER be the same.

I look like a little old man with male pattern baldness because WBR has left me with permanent bald patches on top of my head.

Yeah, no lasting SEs for sure.

L

Egads007

Chelsea - I had a brilliant MO & BS, and I’m grateful, however I often said to friends and family that I felt a little bit like sheep being herded during the process. So much so that I developed an amazing ability to ‘baaaaa’ realistically.

I often wondered if they followed the gold standard protocol out of overloaded patient numbers and that questions become ignored because they ‘know better’, and that they think we are ‘playing doctor’. Frustrating when you simply want a say in treatment or just answers as to why this particular path was choosen for you

marijen

Chelsea, I feel the exact same, a little empathy would go a long way. Instead I feel like I arrive to give a deposition. Questions are shot at me, boxes are checked, symptoms are waved away, and see you in six months.

Lula73

Meow-hoping you feel better soon. I had a similar experience falling a few months ago...I was feeling especially good about myself and bought a cute pair of boots. Put them on to go out with my girlfriends, walked at a good clip from my bedroom through the kitchen and BAM! All of a sudden I was onthe floor, stunned and in pain. One second I was upright and the next not so much. Still don't know how it happened. Hip, butt, knee, ankle and foot all hurt terribly. Hip was the worst. Crawled back to the bedroom, pulled off the boots and put on my safe sneakers for my night out😔

Lita57

"Old Lady cancer" indeed!

Tell that to all the brave women who DIED. from old lady cancer in their 30s and 40s! It won't bring their families any comfort either.

I'm only in my 50s, and I certainly don't feel like an "old lady"!

MO-Beth

Jaycee, I'm so sorry about your friend! I sooo wish there was anything I could say to make you feel better.

As I've told you, you're my new best friend on BOC. And that's because you're so supportive. So funny. I'm sure your friend/acquaintance is really, really appreciative of EVERY WORD you've offered. I'm sure you're doing and saying NOTHING wrong and that your communications are welcomed A LOT from her.

Again, I'm so sorry. This breast cancer thing really sucks!

MO-Beth

Speaking of side effects, I remember when I was 15 years old, HORRIBLE period cramps, and my mom took me to the doctor and he put me on birth control pills. That was in 1975. We didn't have the Internet, so I don't know why I knew anything, but I asked, "Aren't these bad for me?" He said, "Millions of women are taking them without any side effects." I remember being reluctant. I -- at 15 years old -- reluctantly took them...for 15 years until I had a hysterectomy. And now this. Lots and lots and lots and lots of people my age with breast cancer. Just a thought.

Meow13

MO-Beth, you sound like me. I had the worst cramps from about 14 years old until about 30 years old. My mother always thought I was lying or being over dramatic. I went on birth control in my early 20s but I still had some wicked periods. I had my first child at 33 years old and when my mother asked me how painful my delivery was. I said I've had periods with more pain she almost cried. I tried to tell my doctor and my mother but was ignored. After childbirth my periods were better. I love being postmenopausal.

MO-Beth

I had had an AOL account since 1996. It got hacked. Lost all of my contacts (after they kindly sent out an un-openable email to all of my contacts) I own a business. I got hundreds of emails and dozens of phone calls asking about that attachment. Had to regrettably dump AOL. Went with gmail. I loved AOL. Kinda hate gmail.

MO-Beth

Meow, my cramps went away with the birth control pills...yay! I had my daughter when I was 25. Most of my friends had natural childbirths. (It was the 'thing' then) They all did fine and they all had at least one child afterwards. I thought, oh, I've been through period cramps...how bad could it be? SO I started out thinking I was going to have natural childbirth...NOT. I was induced and I had two epidurals in 6 hours. Vaginal delivery. Only had one child. Seriously...because of the pain of childbirth. I'm a gigantic wuss...

Egads007

Pardon my ignorance, but what is ‘old lady cancer’

Meow13

Egads, that is what I want to know. I once heard that I had old lady cancer because ILC typically shows up in the 60+ crowd. Now I am not sure if that term is also being used for hormone positive.

I hate any mention of being associated with an old lady and so does my 80 year old mother, longing to be forever young. And especially hate cancer. God we need a cure.

Come to think of it young lady cancer sounds equally bad. I think our BCO male friend traveltext wouldn't want either term.

Egads007

Meow, I'm shocked! I had no idea that there was an 'age label' on ILC (or any other type). Wow, that's so wrong on so many levels. First and foremost, cancer never ever discriminates. Second, age labelling anything suggests a negativity towards a particular group of people, as if their 'value' is diminished, and that seniors getting cancer is to be somewhat expected and reasonable.Third, why 'lady', geeze, do we get the blame for everything? Wow, just wow.

Thanks for enlightening me.....and yes indeed, we need a cure!

jaycee49

Through this whole process (MS for 30 years, BC for 4 years), I've learned two things about doctors and the medical system:

With side effect, you are TOTALLY on your own.

With insurance issues, you are TOTALLY on your own.

Some people here have been lucky with doctors who are willing to at least listen to se issues. My former MO thinks side effects are in the patient's mind. Brought on by stress, etc. Thus, former MO.

Meow, my DH also likes to talk about all the housework he does now. I did EVERYTHING for years with a full time job and a child. (He also tries to claim he did house work then. Silly man.) I just wish I had known all the sighing and complaining techniques he uses to elicit sympathy while doing said housework. You mean you don't have to just grin and bear it? Keep silent when he gets up from the table, not even taking his dishes to the sink? Not say anything when you drive into the garage with a trunk full of groceries and a baby in the car seat and he does not move a muscle to help you? I didn't know you could claim a headache and get takeout. Just did not know.

DancingElizabeth

Meow - WTF. I *too* hate being associated with being an old lady!! (I cringe when someone calls me "ma'am" but already had my vent on here about that - LOL)

Jaycee and Meow - My DH drives me INSANE. He works from home. I commute 50 miles to work and 50 miles home - five days/week. And, every stupid Saturday or Sunday - without fail - he complains about "how dirty" the house is. He's the one making it more dirty than I am - because he's there - A LOT more than I am. And, has more TIME to clean it!!!!

Then after he cleans something - I have to hear about it - over and over and over again - like he wants a medal or something.

ChelseaSculler

Egads, in this case, my "old lady" cancer is Luminal A—slow growing, most often occurs in postmenopausal women. When it does occur in pre-menopausal women, it is often identified as being a fibroadenoma—which is exactly my situation (I'm still premen and shy of 50). My mass was first identified in 2014 and only in 2018 was it biopsied and dealt with. There is at least one book that specifically says it shouldn't be overtreated, because it is so very slow—killing a fly with a nuclear bomb. I'm using the term ironically, but I can certainly see the potential for insult and I'll take care.

Thank you all for confirming I'm not wrong to be irritated though! I felt like my RO (who I met for the first time yesterday) was saying all the right things ("we're partners!") but completely glossing over anything but redness. And maybe a "little fatigue". And that LE isn't a concern because she's not going to radiate them. (Um, really? Not at all? That is not how I thought that worked, so why wouldn't you clarify my misconception?) So my advocating for myself felt more like being gaslit.

Egads007

Chelsea - My comments weren't levelled at you but more at the label, so I hope you don't think I was sounding off at you in any way. I'd never heard the term before and it took me by surprise. I do see the irony. I've been guilty in the past of using 'little old lady' phrases when referring to all sorts of stuff, like knitting, walkers etc., which is crazy disrespectful, young people also knit and use walkers. I guess as I age I could have grown more sensitive to it, or maybe just more accepting of every person being vital from birth to the grave. I try not to generalize, but probably still fall into the pit occasionally.

Yes indeed you do have a right to be annoyed. Like I said before, Baaaaaaaa. You should make an appointment with your RO, telling him/her that you have things you need to discuss, then go in guns flaming lol! My MO once said 'wait until you get on an AL, I don't even want to tell you how bad it is' So I reply with 'actually I do want to know'. She left the room for something, came back and carried on as if the conversation didn't even happen. Back in those days I just grew wool and started baaaaing. I hope you get what you need from your RO very soon!

ChelseaSculler

Egads, oh, I didn't think it was personal! No worries! Just giving context—it was a good question, I'd been using shorthand terminology.

Egads007

Meow13

Oh I know, you were not labeling no worries. I have heard others on this website say their oncologist used the term "old lady" cancer when describing it to them. I am sure it is not in their medical lingo and probably is a hang over from old school descriptions.

marijen

For me it doesn’t matter if they use the term because that’s the way I feel I’m treated. I had an MO that left the room and didn’t return at all! It’s just unspoken.