STEAM ROOM FOR ANGER
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Lori, exactly, we all should have some one looking at the big picture and not a PCP that knows nothing about breast cancer, bone mets, liver mets, lung mets, and brain mets, not to mention treatments. I’ve even seen one woman that had elbow mets. Actually it could happen anywhere and I have to add skin mets. So shouldn’t that person be the MO? Not the radiologist, the BS, or the endocrinologogist? It makes sense to me. Why do they insist on the PCP outsourcing, poor thing. With my AI eye problems I got bumped around too. How much can an opthamologist know about Aromatase Inhibitors, especially when the MOs can be in denial about side effects? This is why I look out for myself and get every symptom documented. We have to keep at it until someone listens. Make sure they don’t drop the ball. So glad your MO is watching out for you.
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I'm really mad and upset. I just found out that the very first person I met and PM'd with on BCO is stage IV now with mets all over the place. I almost wish I hadn't tried to find her but I did. Now I know. I wish I didn't know. Can I unknow it now? No, of course not. I need to write to her and support her if I can. It just SUCKS.
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I am very sorry Jaycee. Hugs to you.
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Jaycee, I always feel a little bit of hard won hope sucked out of me when I hear news like that. We all try so hard for that stupid, positive attitude that will save us (cough) and then you hear this and it just ... flattens you. I am sorry for you and for her.
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Thanks, mel and runor. I messaged her but probably said all the wrong things. It was all about me and how devastated I was. Of course, she replied and asked how I was doing. You know the four places most likely to have mets? Lungs, liver, bones, brain? She has them ALL. Weekly taxol for a YEAR. I feel so humbled by her existence I don't know what to say. To her or anyone.
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Jaycee~ no one always knows exactly what to say. But you reached out and cared. Now is your chance to tell her how you feel about her. I am also humbled by your sharing this with us. I am reaching out to all of you. We are really a sisterhood. I can feel your pain. Honestly. Strange. But true. Hugs to you and your amazing friend. Much love ~M~
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Things are starting to come back to me now. I actually met her on another forum and she told me about BCO. I wouldn't even be here without her. Wouldn't have gotten all the info and support from BCO. We only PM'd a few times but she is just SO important in my journey. I hate that word. Sounds like a vacation. Some vacation.
I wrote her again. I hope I did better. What do you say? Oh, what I said in the first paragraph of this post.
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Jaycee~anything you say is ok. You're showing kindness and friendship..... it's all we can do to support each other in the place I call shit stew. I'm glad she brought you here. She will be added to my daily strength thoughts. I'm not overally religious, but I care very much for people especially in the same battle or journey as I am in. Just being you, should be enough, IMO..... much love ~M~
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Jaycee I'm so sorry to hear that. I think it will mean a lot to her that you cared and reached out. Just knowing that someone was thinking about me was enough to help me get through some rough days. Big hugs to you.
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Agree. Some ladies have zero support other than here and to know someone is thinking about them can help brighten their day that might be really stinky.
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I have a rant. In the whole sceme of things it is small stuff but here it is. So I like happy uplifting animal stories so when on FB I click onto those. Guess I am thereafter in the system and it is known I love animals. I see a petition about an abused dog that was tortured, his ears cut off and thereafter disemboweled. They caught the freak and were looking for prosecution via a petition. I signed. Since then my email is filled with 20 animal horror stories a day and the email titles completely freak me out! I can't keep up with unsubscribing to all the influx of emails and now I have the "save our water", "save our air", "climate change", "mom in Uganda with no food for children" "civil rights violations", OMG.... everyone with a cause is up my butt! I had to delete my email. I kid you not, 50 emails a day and growing. THIS IS WHY NO ONE WANTS TO GET INVOLVED IN ANYTHING! What an idiot I was for signing a damn petition!!!
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I hardly ever go on Facebook anymore. I just got SICK and TIRED of getting blasted with all that crap. Don't do those silly quiz/poll things either (what Disney Princess are you?....etc.).
Apparently I don't have the correct version of Adobe on my computer. I was trying to complete one of those "fill in the fields" forms, and when I tried to send it back, it said I couldn't do it unless I signed up for the newer Adobe program, which one must PAY FOR first of course. I couldn't even save the completed form by another file name either. It kept prompting me that it will only save the "template" unless I go buy the upgrade where it will save your data in the file. I don't want to pay for the newer Adobe because I hardly ever use it, and I won't be around long enough to reap the advantages of the $$ spent.
I am supremely PO'd because I spent close to 3 hours typing the info into those fields because not everything could simply be copied and pasted from MS Word, but at least I have Word to fall back on. If I can't get this resolved. I'll just have to send the end user Word doc files, whether they like it or not.
Terminal St IV people shouldn't have to deal with this BS.
L
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Spam and phishing emails: Your email service provider should have an address to forward spam and phishing emails to so that they can lock future emails out. Also, if you move the emails to your junk or spam file, you can delete all at once, plus future junk or spam emails from the same source will fall into this file. Try to check all the options at your email to locate the spam/phishing forwarding addresses or the spam/junk folders. It depends on which email service you are using, so I can't tell you specifically. (if you just delete, you'll just keep getting them). And don't try to unsubscribe then when they get your unsubscribe they will know your email address is active. Same thing for telephone marketers, if you answer the call they will keep calling. You have to go to your phone account and block the number to make it stop.
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Lita-if you still have the document pulled up, try printing it to a pdf. You click file then print and select pdf file from the printer drop down box, then click print.. It will save it in pdf format. Then you can attach it, upload it, etc and it should do it without having to upgrade. Hope this helps!
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I already tried that.
DD says the file probably has an embedded command that the end user put in when it was created that DENIES that function...it just automatically boots you over to this other prompt that says if you want to save it in a PDF, send it, sign it, or any other function, you have to UPGRADE to the newer version that has all these other functions and apps.
DD is going to try and help me in the morning. She has the newer version of Adobe on her computer.
Thanks for your suggestions :>).
L
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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.
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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.
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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.
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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!!
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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.
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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.
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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!
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yes I finally got relief. Finished cleaning the bathrooms going to watch tv now.
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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.
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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
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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
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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.
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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😔
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"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"!
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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!
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