STEAM ROOM FOR ANGER
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Kber. Chemo freakin' blows, doesn't it? No way to get through it except to get through it. Even if you have to crawl over the finish line, you still will have done it.
You are tough. You can do it. You will do it.
Sending huge hugs. You're almost there.
Trish
P.S.: Celebrate when you're ready. Not before. Everyone else can wait. This is your victory.
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Thanks Jaycee, I understand. I am sooo sorry you have to deal with MS. About 35 years ago my doctors thought I had MS. I had a "drop foot" and problems urinating. It turned out it was from a herniated disc from a car accident. I could never prove it was from the accident, but I am sure it was. Anyway, I still remember calling the MS society and a really nice woman spoke with me and then mailed me all kinds of information. I don't think we even owned a computer at that time. I remember enough to want to give you a huge hug! You have got to be a very strong woman because you have all these issues yet find the time to help the rest of us! Thank you!
I wish I had heard that doctor speak. All that my PS told to me was that the radiated skin might be problematic, but he made it sound as if I shouldn't worry about it that he would handle it! I feel stupid now because I didn't press him on that issue.
Today my MO called me. I was shocked. She wanted to talk with me about my fears and decision to not take the Letrozole. (Long story, I won't bother with here.) Anyway, I am going to start the Letrozole tomorrow. It is just one more thing I don't want to do, but know I should. You all know what I mean.
Kber, I didn't have chemo this time, but I did the first time I had breast cancer. It took me a good year to get my energy back and I am not sure it all came back, but I did fine for years......until the recurrence. Thankfully my oncotype DX score was 21 and for my age showed chemo wouldn't help this time around. I'm glad because that really would have put me over the edge.
I think low energy can really start the "negative" ball rolling. By that I mean, I do fine when I feel more like normal, but feeling so tired can suck the life out of a person! It is easy in that state to want to give up, to not care about anything, the cancer, job, work at home, etc. I don't think there is a word in the English language to describe it, but those of us who have been there understand. That is the time we really need these board, this community, to vent to. Hang in there Kber, it will get better! When I said it took me a year, I did start feeling better about a month after my last chemo, but it was only a little and gradually with each month, more energy came back. After a while I just realized one day that I felt normal again, so I don't actually remember the exact amount of time it took. Your energy will come back too! (((hug)))
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Ok, went to neurologist appointment who tells us that they are concerned it is brain mets. Guess what? NO MRI report!!!! He had staff call and nag. they have not finished the report yet!!!! Which is what I specifically asked them about yesterday!!! Stressed I had a 10 AM appointment today. So now we wait until he can get report and read it. Then he'll tell us if ok or if a wait and see. Have a follow up in June already. No wonder I can't sleep or think or speak all my words out loud. They are in my head and won't come all out of my mouth. So just wait...………cancer stinks...……………..
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Janet - sorry about my english. A gremio is a laboral union. The hospital staff didn't work today to claim for better payments. I'm in Argentina so you can imagine how difficult is public medical care here.
I will talk with my MO next monday. Maybe she can do something. Thanks
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yindorian that is really bad that a heal agency is allowed to just close down. I can understand they want better pay but to not treat patients in a timely manner is not ok.
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kber. I hear you on chemo sucking. I did not enjoy it at all. It sucks.
Now I am stage 4 but getting targeted therapy BUT I do deal with fatigue after so many years on active treatment. The only thing that helps me is walking and small hand weights. I do short walk in morning and after meals think about 15 to 20 mins. Gives me more energy.
Hopefully you will feel better as the chemo leaves your system and you find things that build your energy. As for the hair, wigs are great. My hair did not come back after brain rads and I live in them. Mine look like hair and they make me feel pretty.
BTW, I have decided no more chemo for me. Living on my own makes it impractical. If my tx fails, I will look into comfort measures. I certainly would never have a systemic chemo again myself.
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I just spent the last hour trying to chat with Medicare online. BIG MISTAKE. Yesterday, I got a bill from my hospital for a service date five years ago due to what is called a Medicare "take back." You guessed it. Medicare can review a claim any time and decide they made a mistake and TAKE BACK money they paid. FIVE YEARS. I explained all this in a chat window and my responses, not right away but later, stopped being sent. I lost the first guy to this glitch and then after explaining it all again, the second person said I wasn't logged in so she couldn't access my claims. My login had TIMED OUT, of course. The third person just told me to call because she doesn't have access to records THAT OLD. Are you kidding me? Has anyone experienced a Medicare take back? Can I look forward to more of them as I sit here in oblivion thinking my bills have been paid when they have not? Or Medicare can call a DO OVER for any of them?
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Wow Jaycee! Did they give a reason for the take back? I contacted Medicare regarding my bills showing my whole new health care number. Theanswer they gave was there’s no law against it. So they spent a fortune to give us new numbers because of a bill in congress to protect our privacy and then there it is in big black and bold. Crazy. Thanks for the heads up, I won’t be calling them again.
Can you appeal the charge?
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The hospital said they are still reviewing it. So why send the bill? Because a lot of elderly people, when they get a bill, just pay it. There seem to be these Recovery Audit Contractors (RAC) who work for Medicare (private companies) and it's almost like a contest to see which company can recover the most money. Billions. Then the hospitals have their own contractors to try and outsmart the Medicare contractors. Who wins? Not the patient. This has already ruined my day, probably my week. I still have to call 800-Medicare and see if I can find out anything. Maybe later. I need to decompress first. This is all a stage IV cancer patient needs...more stress. Thank you very much, Medicare.
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I've been reading posts here since I was diagnosed on my 41st birthday. Almost a year ago.
I thought I was ok.... not. The aftermath of cancer is the worst for me.
I hate my mutilated body. I hate my stupid pube looking head hair. I hate Tamoxifen. I hate cancer and I REALLY hate it when people tell me you are so blessed to be alive. I'm not blessed and I don't feel alive I feel dead inside.
Rant over.....
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That kind of thing would ruin my day too! Is it a very big bill? Hopefully it’s just a coding error that can be corrected. Yikes! Our treatments run into the hundreds of thousands. I’ll bet the bill going out was just automatic but there should be a flag that it’s in review. Enough to give you a heart attack.
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This is the original message I sent to the online chat guy, Myles. I lost Myles when my send button quit working. He kept saying, "are you still there?" Extremely frustrating.
"I just received a bill from my hospital where I have received cancer treatment for the last five years. The bill is for service on Oct. 10, 2014. I called them to inquire about a bill from five years ago. They said it was a Medicare take back, where Medicare had paid for a service and now is taking back part or all of that payment. Can Medicare go back over all of my cancer treatment and take back any payment that has already been made? Should I look forward to more of these take backs? I suffer many indignities in my cancer treatment but this punch in the gut is over the top. I was, for all these years, assuming my bills have been paid. Now I find out maybe not. This is not a stress a stage IV cancer patient needs. Do I just sit here and wait for more bills to arrive?"
I put quotes around the words "take back" in the message and got an error message that gave a long list of characters that are not allowed on the chat. Double quotes was one. I took them out. I was amazed that I had avoided all the others.
I actually said to the person at the hospital, "can you go back 70 years and take back the charges for my birth?"
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I'm a single woman with a 21 years old son who has his life, no job, my mother has alzheimer, my father drinks, I have a brother who has his life too (had his life because now he is taking care about me, my mother, my father, we all are in his backs) I always think what is the point to survive in this conditions. Sorry, just having a bad day
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Oh that’s funny! Let’s hope they don’t charge us for family members too, retroactive. Did the fellow give you another number to call? Mine did but the chat was lost when I tried to save it. I wasn’t about to use it anyways. I have received notices from Medicare that a bill is in review or something. I kept calling the hospital checking if they had taken action. They kept telling me not to worry and eventually it was taken care of. But not five years back. There is something, now I remember, the hospital has to inform you that Medicare won’t pay before a service. If they didn’t you aren’t liable. I will try to remember what it’s called. Maybe someone else knows...
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marijen, $2743.88. But posts after mine by JoJo and yndorian make me think. That is not such a big deal when those two seem to be experiencing such despair. My bill will get settled and I have the resources (mental, etc.) to move forward. We here are sending you two all the support we can muster. Sometimes venting helps and sometimes it it just a matter of time passing and things getting better. I hope that happens soon for you both. Please ask for help. That's the hardest thing to do, I know.
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You’re right Jaycee, we have to keep these problems in perspective. Here is what I’m referring too:
MEDICARE ADVANCE WRITTEN NOTICES OF NONCOVERAGE. This has to be given you by the hospital at least two days before. Although they usually give you a form while you’re on the table agreeing to pay what Medicare won’t. My sister refuses to sign it at that point.
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This is the only good information I got from the chat:
"This claim was adjusted by a Medicare claims contractor. A contractor may adjust a claim if: •The contractor made a processing error. •The claim processed incorrectly because the provider filed the claim with missing information. •There is invalid information indicated in a field on the claim. The provider must resubmit the claim correctly for Medicare to process the claim"
They seem to be blaming the whole thing on the provider (hospital).
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Jaycee49 - please don't feel guilty about expressing your anger. This is what this thread is about. There are not comparisons here. Some people are worse than us for sure. I hope that God never sends us all the problems we could endure. Thanks for the kindness
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jo-jo you are right---cancer is the pits.
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Jaycee - I have never heard of anything like that!! I used to work for attorneys both in CT and NC and when we had a client who "couldn't" pay a bill - even a huge one - I would call and tell them that I needed to negotiate the charges down to something affordable for our client. And they did it. So don't pay a penny until you talk to someone who can help you with this, even if you have to contact your lawyer. It just doesn't make any sense. and you are right - you don't need the stress. take a deep breath and relax.
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Jaycee, that’s the exact notice I have received. Don’t worry, the hospital will fix it because they don’t want to be stuck with the balance due. They overcharge anyways.
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Nursing home facilities are really like a barn with stalls for the horses. Last month my father's wonderful roommate passed away from the flu and pneumonia. Wonderful man. Then they bring this creep in and all he wants to talk about is is black belt. And fighting. Alarm number one. So I told the head nurse. I don't think this is going to work. The man is hard of hearing and my father isn't and his television could be heard in New Jersey, that's how loud it was. He is wheelchair bound, where as my father isn't, he's bed ridden, but can be transferred to a wheelchair for a limited time. His roommate bangs into his bed every single
Time he moves out of the room. If my dad is sleeping. Not anymore. In the middle of the night he wakes up and notices the staff turned the tv off and on it goes for Canada's pleasure to hear wagon train at 200 am. We said it's not working and we don't want him in here, it's not a good match. We were told we had to wait till a bed opened. That next day , the dude started assaulting the nurses calling them really vulgar names and was throwing wheel
Chair legs through the air and was extremely close to hitting my father. The police came and he was taken away in the paddy wagon. However later that night they brought him back and said he would have to wait out the paper work for federally awarding him to the state. (Minimum of 90days). So they moved my father out to a single room for his safety. So today, a bed opened up. And he was being moved yet again. Anxious again seeing his stuff being moved. But no call to the family to let us know so we could adjust our schedules. Sometimes when I walk through the hallways of those places. I see the wheelchairs stacked In front of the television, mostly ladies all alone. Crying out for attention. If I'm honest I don't know how long they hav even been sitting there. My father is not alone. Everyday he has someone visit. I've had several people say the children place the parents in the places and never visit. It's really very very sad. But the entire nursing home facility leaves a lot to be desired. It's really a shitty way To have to live no less die. I struggle with guilt wishing I could bring him home with me. I'm just too sick to do it. He's safe and they do a good job, it's just little things randomly bug the hell out of me. And some of these nurses are assholes. Seriously like find another profession, because you're really a bitch!
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Micmel - I'm sorry about your father. These should be the quietest moments in his life and instead he has endure all that crap. It is not fair. But he has been blessed with a daughter like you, others don't even have that. I hope for a sooner solution. Kisses
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Oh michmel what a terrible way to treat someone who needs care. I'm glad your father has some support at least with other family as well. Will keep you all in my prayers.
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Hi hi all, I just found this group this morning while I was looking for information on letrozol. This will be the third aromatase inhibitor I've tried. I was diagnosed two years ago with IDC in both breasts and some lymphatic vesicle involvement. DX score was intermediate, but they convinced me I didn't need chemotherapy. the surgery came and went, and I was shocked at how much they took of my left breast, including the nipple. But it did heal up and I started thinking about reconstruction. The radiation on both breasts undid me. The skin became open sores, and then turned black. Fatigue and nausea more unbearable by the end. the aromatase inhibitors finished it off and I have not felt like myself ever since.
I see that I really don't have to tell you what a life-changing event this breast cancer thing is. 2 years ago I was extremely active, biking, yoga, skiing, playing pickleball etc.. Now I try very hard to keep active but I feel like I'm a hundred and eighty years old some days, and after two years I've lost momentum.
It's funny that after the initial treatment how everybody thinks it's over. I don't expect people to understand and usually keep my mouth shut, but it really irritates me.
Irritants:
Let me know if there's anything I can do to help. (Nice thing to say, but if I'm struggling don't put it on me to decide what you're going to do to help me. A dear friend of mine came over and weeded my gardens. Others dropped off food. All without asking. Bless them)
You're cured (Really? Hope so.. waiting out the YEARS AHEAD IN WHICH RECURRENCE OR METS CAN OCCUR.)
My friend had breast cancer.. hers was really bad. Worse than yours. (HOW DO YOU KNOW? AND YOUR POINT IS??!)
You're so strong. (NO I'M NOT!!)
You're a fighter. (NO I'M NOT!!)
And I hate those ads where the woman with breast cancer says, "I'm relentless too!" And then rides off on a bicycle or goes out to play tennis or something. Or how about the new add where you go to the drugstore and buy cosmetics so that you can look beautiful while you're wearing a wig or a scarf, or have lymphedema from surgeries and irradiated lymph nodes, or you've gone up a dress size or so in the waist and down a few cups up top. Give me a break. I'm a scared sissy, a who has thinning hair and wears compression garments. New makeup is NOT going to make me feel beautiful.. Strong? What choice do we really have except to continue on??
Thanks for letting me RANT!
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Joanie~ I appreciate and agree with everything you just said. I'm sick of hearing. You should be happy you're doing so well. Really ?? Then how come it takes me three hours to wake up and get my feet feeling, so I can walk without falling on my face!! Cancer not only is life altering. It ruins who we are. We become lost in this New normal and feel like we are supposed to slap a smile on and join in with the crowd? I'm so sorry for anyone that has ever heard the words, “you have cancer", the floor drops out and youre falling into the abyss of the unknown, grasping at anyone around you, that you crave safety of what you use to feel. And still we fall.. flailing like a bird with two broken wings. Not knowing how hard you'll hit when the ground comes a knocking. Then Bam! Still broken.
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Joanie and Micmel - you both said it so well.
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Well said.
Having someone help without being asked is what is needed.
Cancer commercials stink.
The gifts of "pink stuff" stinks too from people who think they are supportive.
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I am sick of all the BS too. It is a disease that has a terrible treatment regiment. Better medicines and a cure needed, badly needed.
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AliceBastable,
I see my husband the same way as yours but when he said, " I think and I feel like I will follow you within a year after you're gone" .I silently cried when I went to sleep.
JanetMara
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