STEAM ROOM FOR ANGER
Comments
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Wow. Something has to be done somewhere. Hard to believe all those people are that uncaring.
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Marijen thanks for the article... opened my eyes to what is going on behind the scene. My Herceptin costs $6000 every 21 days and my insurance right now covers it AFTER s rebate from the manufacturer. My out of pocket cost before my deductibles were met was $235 per treatment!0 -
Wow, I don't know how you do the health care in the states. It is so expensive even for coverage. I may have to wait a long time but I don''t have the additional worry that insurance would deny my treatment. I would not be able to afford premiums or coverage for anything in the US. Its too bad they can't figure out a system for everyone. Would be one less worry on top of everything else.
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New vent. I had a vaginal culture at my gyn LAST Monday, April 1. The doctor gave me an rx for a steroid creme. It worked for a few days then the burning got worse. I called and also let them know on their portal. Heard nothing. Called THIS Monday and Tuesday. They said they would call back. I heard nothing. Finally, last night, being in extreme pain for the third day, I wrote a semi-nasty (thank you, candy) message on the portal. This morning, the culture results are posted. Positive for BV. I call and get intense with the nurse. I need a new script TODAY. Now she is calling me hon and dear (which I hate) and making excuses while saying she is not making excuses. I will get the new med today but only thanks to me getting nasty. I tell you, it works.
I'm also looking for a new gyn practice. When my sister was diagnosed with rheumatism a few years ago, she looked for a rheumatologist. There were none in her town. A doctor friend of hers said doctors only want to do "procedures" because that is where the big money is. Seeing patients for regular office visit type stuff is not enough. The gyn's I see are always wearing scrubs. Procedures.
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Grrr, Jaycee49! You shouldn't have to snarl at people to get help with a painful condition. What is BV?
Lyn
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VLH, BV is bacterial vaginosis, a bacterial infection in the vagina. I've only had a few. I've had many more UTI's (urinary tract infection) and yeast infections. The symptoms are about the same, at least for me. That's why I have to have a culture. I have very severe vaginal dryness and atrophy from chemo so this just exacerbates the symptoms. And now the applicator for the BV med is also making it worse. When the BV is gone, I will still be sore. It will take even more time to fix that. The 48 hours extra I had to wait for the culture results (the gyn office received them Monday 8:30 AM, I finally got call Wed. late PM) is that much longer I have to suffer this pain. Their fault. The nurse I talked to told me how she was covering two jobs that day, "not that I'm making excuses." Yes, actually, you are.
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Thanks all for letting me vent about the insurance company. YES we need the United States Healthcare System overhauled. So to let you know what happened. After getting the run around from the insurance company and talking with my MO office -- who was also getting the run around from the insurance company--- I think the Lupron issue is taken care of. The insurance company FINALLY said that Lupron doesn't need prior auth and is covered on my formulary plan. The woman at the docs office charted the time, date, and name of insurance person who she talked to on the phone when they said it was covered and I called the insurance company and requested a letter stating that it is covered be sent to me (we shall see if they send that). So I have appt to get the injection next week and I WILL NOT PAY FOR IT, COME HELL OR HIGH WATER.
Jaycee--- No excuses is right. We are the patient. We are the reason they have a job. So sorry you are in pain.
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Good luck Candy678.
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So sorry for your pain, Jaycee
(.I am absolutely NOT EXCUSING them, but some of these nurses work their as%^s off. They are literally RUNNING back and forth between patients in the onco/IV suite. They are doing the best they can. And then there are the ones who don't give two sh#&'s
But it's the INSURANCE BC's (rhymes with "witch" and "shunts") who really irritate me...AND the people in the records office when you want copies of scans,
Incidentally, I had a HORRIBLE experience with a UTI 30 years ago. I had private insurance, came down with a UTI - it was brewing since late afternoon, and I was literally PEEING BLOOD. Called my Dr,, got reception and was told she could NOT squeeze me in until morning. I went in first thing in the next day after CRYING all night on the john (oh, the pain). The doctor was NOT PLEASED. She excused herself for a minute, went to the front desk, and I could HEAR her dressing down the receptionist...telling her why it's crucial to get UTI patients in immediately (it can go up into the kidneys, shut them down... and TMALSS, you can literally die from a bad UTI if it goes septic) Dr said she could have at least Rx'd something over the phone until the culture came back. Thank God you can now go into Ride Aid or CVS and get that AZO stuff to help tide you over, but that wasn't available here in the mid 80's.
Hope you get this cleared up; I have the vaginal dryness/itchiness, too.
It sucks, L
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The bozo's down in Washington are covered with "Cadilac" healthcare plans. Obama should have left the insurance industry alone, and the current president doesn't have a clue how to repeal it because no one wants to write a new plan. Pathetic. AHHH that felt good. Have a wonderful weekend everyone!
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F@$# this S!&%.
I am so sick of this cancer and the side effects from treatment. I hate having one breast, I hate the joint and nerve pain, I hate the weight gain, I hate the loss of my fertility and my youth, and I hate the lymphedema. I hate it that my plans and hopes are ruined.
I hate the patronizing positivity and false sense of control peddled by some healthcare professionals. I just want to scream. I hate dealing with insurance companies, more than words can say.
As I sink farther into this haze of treatment and side effects, I really wonder sometimes whether it's "worth it." My body is not a comfortable place to be anymore. I don't want to die, but I sure as hell don't enjoy living like this. Isn't there another option? No?
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No words of wisdom, button. Just a hug and shared anger that you have to deal with this at such a young age. I'm so sorry.
Trish
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Happy Cancerversary to me!!!
It's been three miserable years now (4/14/16 - 4/14/19) since Dx.
How come I'm not happy? I should be thrilled to still be alive, but it's getting harder and harder to walk or even hoist myself up out of a chair.
I have Fred Flintstone Feet, Tree Stump Calves, and Stovepipe Thighs, all thanks to Gemzar IV chemo edema, which I'm told will NEVER go away now that my lymphatic system has been wrecked by Tx. I'm tired ALL THE TIME, but I don't sleep well. I can't drive anymore, and I can only read for about 10-15 minutes b4 everything becomes a blur. If I bend over to try and pick something up, I almost pass out. Oh, and those lovely thrombocytopenia reddish/purple blotches all over my arms, chest, and now they've spread to my legs so I have to keep covered up.
Just delightful.
I'm getting sick of this, and part of me is actually praying for a quick transition. I have my Advance Directive and DNR in place. My "Death Folder" is complete, urn for ashes is purchased as well as niche at the mausoleum.
More happy days ahead...
L
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Lita57, I am so sorry that cancer and the treatments have, and continue, to beat the crap out of you. It's not fair that you are so quick to offer support and uplift to others here, but we can't do anything much for you. All I can offer right now is some natural Bluebell beauty
And my puppydog's sweet face that helped me when I felt horrible.
Just sharing two of my favorite things with you. And sending a gentle hug with them.
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Thanks for explaining the BV abbreviation, jaycee49.
Lita57, that sounds so miserable. I'm very sorry that the cancer and the related treatments have exacted such a toll.
Lyn
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Lita congrats on your cancerverssary but so sorry about you side effects. Cancer sure stinks!
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Oh Lita, better treatment options are so badly needed! Hope you have some fun on your trip.
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I hate feeling like a bad person, but right now I really do and maybe I deserve it? Maybe I am a bad person? I don't even know anymore.
After I got out of radiation I thought, this is it. I'm going to quit doing things just because other people expect me to do them. I'm going to really take a big, fat stick to someone else's idea of my obligations. Not that I live without consideration of those around me. But I also need to quit living a life where everyone else's needs and plans get to run over my needs and plans. It's a balancing act that requires constant attention.
I hate hosting meals. For years I hosted large Christmas gatherings and it was seriously high stress. I did it. I cleaned the house. I decorated the tree. I bought the groceries. I began cooking three days in advance, you all know the routine. And then I stood in my kitchen and washed dishes until 2 in the morning (no dishwasher). I did that for years and by the end of it I was an exhausted, frazzled wreck. The Christmas after my diagnosis I had just been told that there was something suspicious in my boob and it wrecked me. Ruined me. The anxiety and dread knocked me off my feet. I thought, not this again, I can't deal with any more of this. I cancelled the Christmas dinner. There was no way I could pull it off, I could hardly get out of bed. We just had us three plus one friend and we had grilled cheese sandwiches. With the good kind of cheeses. Gourmet grilled - but still, grilled cheese sandwiches.
Now here we are coming into the Easter wknd and tonight Hub springs on me that maybe we should have his family over here. And I did NOT react with gracious compliance. I did not go with the flow and leap with joy at the chance to 'savour every moment with my loved ones'. Hey... I can love my loved ones WITHOUT planning a sit down meal for 17 people! Why does it have to be a meal? No one has a place big enough for this. It's too much work. Why can't it just be coffee and goodies? So much less work. I suggested this to Hub. But he said since it was being held at lunch time people were expecting lunch. Really? People are expecting it? Are you adult men who see how tired and old your parents are still expecting to go home and be fed? All you adult men can seriously fuck off. Can't you all see how troublesome these sit down meals are becoming and change your expectations to make this more do-able and less work for someone?
It's like I can't cope with this sort of unthinking, unchanging stupidity anymore. "Well this is the way we've always done it"... said the lemming before he and thousands of his buddies ran off a cliff to their deaths. Jeez. Grab a brain and change when you need to! But I refused to have everyone here. The thought gives me literal chest pain. My home is where I expect to go to get away from the demands of my life. SInce cancer I find myself digging in the soil and thinking, I love this and I'm going to pay close attention. Or talking with my daughter, I love this and I am going to pay close attention. Or talking with a dear friend, I love this and I am going to pay close attention. These things fill me up, make me know i am alive, bring forth gratitude and peace and awe in me. A hoard of people wanting food DOES NOT. And Hub was upset with me that I said so. He said, well I think it's pretty shitty that I can't have my own family over to my own home! Oh you can. You can! Invite them over! You clean, you shop, you cook, you serve, you clean up the catastrophe after. I will be checked into a hotel and you can tell me all about it the next day when I get home. I have hit zero tolerance for bullshit. I feel bad. But that's how it is.0 -
I once got a fortune cookie that said "Everything is easy for the man who doesn't do it himself". Reminded me of runor's husband.
Just like my husband telling someone on the phone, "Oh she's fine back from surgery, feeling good the cancer is gone"
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Runor ~Oh Runor~ your adult princes need to have everyone on the invitee guest list and assign a dish to each adult person attending. You do nothing. If you want in better have a casserole dish! Dessert 🧁.... seriously your DH should Be protecting you. My DH would never allow it! Let him plan the meal. Every detail. Every detail. You take your open hand and ease over to the couch and place it on your forehead and be that damn damsel needing her hero. Fuc* yeah! Wake up people. This shit is hard! I love you sister. So much!
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Runor, of course you are not a bad person and you know that. BTW, I haven't shopped, cooked, done dishes or cleaned in YEARS. I actually MOVED OUT of our house for three years to get DH in line. Extreme? Well, yes, but desperate times call for...well, you know. "Well, I was WORKING!" he said. He was working doing what he wanted to do while I shopped, cooked, cleaned, took care of a child AND worked. Time to get priorities straight. He is retired now and does EVERYTHING. Sometimes it gets to me that I can't contribute but not much. And that moving thing was before I got sick. I got a good one even though he required some training.
Where did you find yours? In a cave?
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Jaycee - I take my hat off to you for taking a stand with Hub. That's a pretty gutsy thing to do and I admire guts. I hope I have some of my own in putting down my foot with Hub and his large extended family. And it's not like I said a flat out no. I said no to a sit down meal. But he can't get past the 'get together means someone has to feed us'. As I look back over my life I realize that I have NEVER liked big groups. I deal with them, when forced to, but when force and urgent imperative are not on the list, why should I?
Micmel - thank you! I agree! The men in this family need to step into reality and take a more active role in group meals. Believe me, this has come up MANY times with Hub. Falls on deaf ears. What gets me, and what I think really ticked me off yesterday, was how he is quite willing to make me feel bad. He wants everyone here, so he can feel like a hero, providing a place for all to gather, and does not care that this makes me feel bad. And when I said no, which I did, he's quite happy to act like I am the big, baddy that stops his life from being fun and happy. EIther way, I feel shitty a lot of the time.
Meow - OH MY GOD! Don't you love these comments that display a complete lack of understanding or recognition of the real situation that you live with! I've heard my Hub do the same thing, oh yeah, she's back to normal. No! No! I will NEVER be back to normal! Oh for those days when I got up and didn't have some ache or pain or obnoxious lymphedema swelling. Oh for the days when each weird cough or pain wasn't immediately pegged as spreading cancer! Some days I do very well mentally but other days it's an uphill battle and there's Hub telling someone that he basically pays no attention and has no clue. I have dear friends who ask how I am and they are wanting to know how my mental state is and am I functioning. Does my Hub ask this? NEVER! Does he acknowledge what happened? Not if he can help it. Best not to talk about it. Let's pretend there is no elephant in the room. Which is why we have this crisis of him wanting everyone here and me saying no way. I feel his family needs to change in light of the reality that they are too big, the places to host these gatherings are too small, and the people who end up hosting are getting very old and tired. READ THE WRITING PEOPLE and make changes. Instead, they barge ahead as always. This same mentality is blind to what's going on with me and announces that I am fine. I am. But I'm not. You all know what I mean.
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Hey Runor, here's a thought. You could tell hubby you'd be more than happy to host this year's dinner for his family, as long as he's willing to hire someone to clean your house, and someone to cater the meal. Oh, and better make sure the caterers do all the clean up, because you doing any cleaning is not part of the deal. And he'd better hop to it on arranging all of this, since time is running short.
Good luck.
Trish
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Boy, that post made me sound like a real witch (with a
. I did EVERYTHING for 25 years and now he is doing EVERYTHING for the last 15 years. Yes, we just had out 40th anniversary. Why did we never split the work? Got me. Trish's idea is good and Micmel's. In our 40 years of marriage, we NEVER had a family gathering at our home. My mother-in-law did it and my sister-in-law. But they really LIKE doing it. Or did they? Was I just a taker like your DH's family? I hope not. I don't like big groups either. Yesterday, I went to lunch with three friends in their 90's. Perfect. And what an attitude adjustment. They know what's up. 0 -
Runor, you know that the person who speaks the truth and points out that something is messed up often gets treated as the bad guy for rocking the boat. Even though she is right right right. Your DH is acting on the feelings of a child who is used to being coddled. Smile and give the little tyke some choices like dividing up the project with his little friends, or hiring people to do the work. You can very helpfully provide a written list/sign-up sheet of every single thing that has to be done, along with a timeline. You can even volunteer for an item you can do, like shop for the decorative paper plates, or prepare the fruit platter. He may decide that another type of gathering would be better when he grasps the size of the project. You can say how lovely it is to see his family and how you are looking forward to it because you know they will do a great job now that you are retiring as party thrower after x number of years of doing it all yourself, because you are no longer up to it. See, very sweet but firm in assuming it is not your job.
My DH’s mom, a lovely lady, blamed me that her son had not seen her in a while. What? He has a phone and a car.
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Runor, you are not a bad person! You just did the unimaginable in DH’s eyes: you drew a line and set a boundary! Heaven forbid!
Family members think we have the energy of the 25 year olds we once were. I was exhausted just at the thought of entertaining 17 people. A maid, a caterer, and a cleaner upper is the only way it would happen in my home at this time.
Sorry DH is disappointed but there must be a dozen other places to have a family gathering. It doesn’t have to be your home.
My cancer diagnosis has giving me perspective like I have never had before. I prioritize the demands on my energy to be expended. I have finally learned to say no, without any guilt! I will not hesitate to play the cancer card
I have so much freedom! You stick to your guns girlfriend...DH will figure it out.
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Runor you are definitely not a bad person. Last year after major surgery not long before Easter I decided I did not want to have 12 people and 5 dogs in my house and be on my feet cooking like a crazy person and doing dishes forever and stressing so they all had a "good time" and visited. I just flat out did not invite anyone. No one specifically asked or expected since I did not say "dinner is at x time". They all survived. At Thanksgiving I let people bring dishes this time around and just said flat out "hey can you help please?" and they pitched in. More relaxed.
You have to take care of you right now. If it means buying pre-made stuff or instant potatoes oh well. Everyone survives. No more cooking for days on end for me either.
Son has a huge house and he can host the whole clan as far as I'm concerned.
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I absolutely love and support your post Runor. You go girl! It’s high time our so called better halves get the proverbial wake up call.
I hate oversized gatherings too. I have a large family so we took turns hosting holiday dinners. My mother always hosted Thanksgiving dinner. It is a big deal and very exhausting. My DH is a great cook so he would make the dinner when it was our turn but I did the grocery shopping and had clean up detail. We all brought a dish to those gatherings.
It seems some husbands need to learn the hard way about what a huge undertaking it is like having to do it all himself.
I think the vast majority of us have been the chief cook and bottle washer for so long we just get taken for granted. You would think with a C DX it would shift some of the responsibilities but some husbands just wait for us to get better like we caught a cold not DX with cancer. Seriously.
Diane
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runor - the division you want with your husband is exactly the one I have with mine - if his family comes, it's on him to do all the planning, cleaning, shopping, cooking, etc. I'll help out once they get here, but that's it. If they're disappointed in how dirty our house is or how terrible the food is, etc, well they raised him so I don't know what to tell them. But they'd never complain because they're good southerners, lol! I don't buy them gifts or send birthday cards either. I have my own family to worry about. I do mine, he does his.
The downside of this is that my family is much more of a PITA. They come at least once a year and there are more of them and they're more materialistic and they're not southerners, so they complain loudly and often. But I can just tell them off and we all get over it pretty quickly, that's just how we roll.
I honestly don't know why you are putting up with your husband.
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I don't think people can conceive of the reduction of stamina that cancer treatment gives us, whether we are in active treatment or not. It takes a LOT of stamina to host dinner for a lot of people.
I am on a gentle treatment now which does work for me BUT I have no real stamina. I have to make an effort just to exercise. I live on my own so no one would be able to really help.
A restaurant meal should be planned with each family paying for their share or getting a precooked chicken or turkey and boxed stuffing depending on what people eat. Paper plates would also be a must so they could just be recycled. May not be elegant, but the most practical since they can go into the recycling. Other people in the family may also need to take over the meal. Family definitely should not spring it on people dealing with so much.
I can certainly empathize with what you are going through runor.
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