STEAM ROOM FOR ANGER
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Lita- that was such a controversial article that it's now gone
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The link doesn't work, but the article is available. You have to search for it.
Interesting article. Thanks for posting the link. I agree with Fotheringay's comments.
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I came on here to complain about my husband. I'm freaken tired. mets ya know. I did my little exercises in pool. got dressed. he was still resting in pool. its like 330pm. we need stuff for dinner. I've had these ribs marinating since thursday. had them slow roasting in oven. me and 21 yr old decide to just run out and get the corn and beer. got back at 5. he is still laying in pool. we bring groceries in. we put them away. he isnt good at that stuff. He got mad since there was misunderstanding. He wanted coors non alcoholic, not 55's{a very low alcoholic beer) so he had a hissy fit and left saying he was going to get his beer and charcoal lighter....I forgot it...I'm about a 6 or 7 on the tired scale. I push through it.. make the corn off cob...we like it slowly sauted...Sara makes the special salad...Its a family tradition..lots of chopping..I say if he aint back by 7...I finish them in oven...My husband barely eats..he could go all day with just peanuts...He comes back at 730pm just as we sit down with our plates..I'm upstairs now. peace and quite. he is doing much better. we had our big argument last month at start of vacation....and he seemed to figure it out....
Freya that girl with the pharmacy problem....each state has a board that regulates docs, nurses, pharmaciest...go find that site, and find the form to send in complaint. And go ahead and find her higher up and speak with them..
I filed a complaint with the 2 radiologists that didnt put a needle in my breast, in what would be my MBC. they know what they didnt do and have to live with that info two.
If you look closely at every family....they all have something....sometimes its a secret...something will come and bite everyones tail. I do hate people that appear perfect.. they arent
he complained about the yogurt today and the frying pan..I just wish he could take over household duties and I could concentrate on getting energy back..He just moved back in..I had to move to texas to get a better doctor. and we were apart over 3 yrs. my docs back home wouldnt scan me when I had symptoms of mets..I had flown to texas to get scans...and he found some shit..he did aggressive individualised tx so I up and moved here
someone in my family called me a bitch last year..she was drunk
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I just spent an hour and twenty minutes on the phone with the specialty pharmacy, STILL trying to get things right. Knocking head against wall. I could have used that time to make something healthy to eat, talk to DH, exercise, get a chore done. Now I am just exhausted again. It takes a lot out of me and I don't need the stress. Sigh.
Also angry about Freya's mind-bogglingly inappropriate "pharmacist". And what's with these people who won't step up and make a team effort with things at home? Sorry to hear it.
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So, my former supervisor retired a couple of years ago. We worked very closely for years, I filled for her while she recovered from surgery and she trained me well and appreciated me always. She was diagnosed with skin cancer and retired. I then applied for and got her position. Within a year, I was diagnosed and needed some help. My supervisors approached her about coming back part time to help train some less seasoned staff, while I was going through chemo focusing on top priority tasks. The whole point of her return was to lighten my load during treatment. First, when offered her previous salary, which was substantial, she (at her husbands urging, I suspect), negotiated for higher pay and now only 4 months into the 1 year term, I get an email (as I am home recovering from surgery) that she is leaving for another job. I'm not angry but extremely disappointed.
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Shetland, that is just awful, and yes very stressful for you. It's not like you are trying to buy a particular colour of nail polish, this is really important and affects your health. To any rational person you think how hard can it be, patient gives you a prescription, you fill prescription, job done. For no one along the chain to help is deplorable, not only is it part of their job IMO, but where is the compassion?
Illimae, I hope they weren't emailing you in the hope you would come back to work sooner. Hope the recovery goes well
The pharmacist has been moved to another location, and apparently getting some counselling and retraining. It is a large chain, so I didn't think it would be a problem moving her. I just didn't want to have to deal with her regularly or have her do that to someone else.
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Illimae, that sucks. I don't even want to talk about the poop storm I had to deal with when I got sick.
Suffice to say, I trained the ladies after hobbling in from radiation every day. I finally quit, a month later, but they STILL emailed me, etc. My boss still contacts me from time to time to see if I can come back...even 10 to 15 hrs a week. Apparently stuff is falling thru the cracks. Nope, no thanks.
Freya, glad the "pharmacist" is going in for some sensitivity training.
Off to make potato salad for this evenings festivities 😁.
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Yummy potato salad! Hope it was a good holiday weekend for everyone. Was nice weather in the north east. Little too hot. I find I enjoy being outside, but the heat flashes are relentless. Its embarrassing sitting still and all over a sudden you're the color of a tomato and profusely sweating for no apparent reason. I had to figure out something to wear at a picnic. HA! That's a good one. I don't really eat that much and I can't seem to take any weight off. I hate having to get clothing that isn't the size I used to wear before cancer took my life away. I did stay outside for hours and it was fun. But it seems like I need a week to recover from doing one thing. I hate the exhaustion I feel if I don't sleep like 10 hours. I loose my stamina very quickly and I was never like that ever. Very annoyingly depressing. Grrrrrr cancer. ~M~
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Had a fun time at the BBQ, but I was totally wiped out yesterday. Fell asleep twice on the La-Z-Boy, and slept till after 9 am. Still can barely keep eyes open today.
Hate you, Mr. Cancer!
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My MIL has been in an aged care facility for about 18 months now. 4 months ago she was moved into the dementia wing, one big difference in this wing is they can't lock the door to their room. We've just had a phone call from the facility, they are going to call the police and charge her with assaulting another resident. She is 5' tall and weighs less than 40kgs. The man she assaulted is 6' tall and weighs over 100kgs.
They were not forthcoming with much information, so we made them put her on the phone. According to her, this man came into her room, sat on her bed and tried to put his hand up her nightdress. She told him to get out numerous times, and when he tried to grope her again she got her walking stick and hit him with it. She kept hitting him with it until he was outside her room, which was when one of the staff seen her hitting him. Personally I'm pretty damned proud of her for not being frightened into submission and sticking up for herself.
We told them that if they insist on her being charged, then we want him charged with sexual assault. Their argument is that no one witnessed what he did. Her dementia is mild and I believe her, she is not a violent person. I quoted their own "duty of care" policy back to them, they are now going to have a meeting with higher management and get back to us. We looked at every facility before choosing this one, now I wonder about that decision.
edit: SIL just phoned. When she arrived to see her mother, she was outside this mans room yelling at him. "My husband was good looking, you are fat and ugly and bald, I'd never have sex with you!" Now I'm in trouble for laughing.
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Good god!!!! Um
No freaking way. Go MIL. I am sorry though for the crap. But isn't she precious? Hugs ~M~
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No way I would stay in a room with no locking door. This is an unsafe situation. Carefully screened caregivers who need access can have a key. Is there no surveillance camera that would show the guy going into her room?
BosumBlues, I did not cry but I did convey that I would rather spend the time I have left (cue violins) with my family than on the phone trying to get my chemo pills.
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Micmel,, she is a fiesty little one. Shetland, we only found out about the no locks on doors thing today. DH decided to drive up there and get things sorted out. It has gone from bad to worse since he arrived. He turned up at 5.15, she was having dinner, so he waited in her room. Around 7pm he was helping her into bed when he bumped her leg, she cried out in pain, and when he looked there is a big nasty looking ulcer there. He asked her if it was being treated by the staff and if she was on any pain relief, she said no to both.
He went to the night manager and asked to see her medication and treatment records. According to the records her wound is being dressed twice a day 9am and 6pm, and she is receiving pain meds 3 times a day. Someone had signed off that both were done at 6pm tonight, he was there, and it didn't happen. The medication is gone though, it all has to be individually packaged in webster packs, so easy to see it is missing.
He took her to the hospital, they are keeping her in for at least 4 days, possibly longer. He is also going to speak to the police tomorrow as he believes someone on staff is stealing her pain meds. I could just cry, I hate the thought of her being in pain and not looked after properly. We have asked her many times to come and live here, but the thought of living out of the city and in the bush terrifies her.
Time to start looking for a new place. It is hard to trust any of them anymore though. I dont know how it works in America, but here she has paid over 1/2 million dollars in a refundable bond and just under $2000 per week to live there (and the price goes up every 6 months) Grrrrrrrrrrr!!
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BB, he doesn't work there, he is another resident. DH observed him today and said it is clear his dementia is quite advanced. He is impaired, so hard to hold him responsible for his actions, but the facility and staff should have procedures in place to protect other residents.
Hopefully MIL won't be going back there, but if she has to for a while, we will be installing a lock on her door.
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Freya~I am very sorry you're dealing with this. What a complex situation. I honestly hope you can figure out the best way to keep your MIL safe and secure. What a stressful situation to have to navigate through. I worry about my mother as well, I think down inside she always thought I would be taking care of her. With my illness, who really knows with something like that either. I will say some prayers and hope you can find a good place for her. Unfortunately,I believe these things happen more than we even hear about. Hugs ~M~
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This just breaks my heart. We had to finally give in and move my parents into an assisted living facility. We just couldn't take care of them anymore. We were so scared of ending up in a place like your MIL is in. If there was only a way to know! The place we found wasn't the nicest looks wise, but it seemed the best for what they could afford. Fortunately the people were nice, and took good care of my parents. After a few years, dad had to be moved upstairs to the dementia ward, while mom stayed in her room. They took her up whenever she wanted, to spend time with him. Then he passed away. Last year there was an accident, they dropped her out of the bed when changing her. Broke her good arm in multiple places. But they said she wouldn't survive another surgery to fix it. They won't keep someone there that can't do anything for their self, typically they are sent to rehab. But the rehab facility wouldn't take her since she wasn't having surgery, so wouldn't be healing properly. So we had to quickly find a new place for her. Not sure about there, but here in the US we have places were people run a facility from a house, with about 5-6 patients. We found one that was a godsend. They did everything for her, and loved her, and she loved them. Unfortunately she didn't last a year there. After that accident, she was never the same, and went downhill quickly. She passed last month. I am still so mad at the people that hurt her, even if it was an accident. They made the last year of her life awful, being totally dependent on others, couldn't even feed herself because of her mangled and swollen arm. She couldn't hold a phone, or remote, or play cards, nothing. And all of these places cost SO much, it is sickening. We were never sure if her money would run out before she did. I pray you can find your MIL a nice new place quickly. Or talk her into living with you. No one should be treated like that. Letus know what happens.
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💔 It seems like everything is breaking my heart these days... ok years if I'm honest. God bless you and your family. Life is so hard. Why is it we live life forwards, but learn life backwards? So innocent at birth, then it'comes around again when you're too old to care for yourself, just as you entered this world too young.The only difference is, you weigh more, and there is not some loving eyes of parents waiting for you to enter the world so they can watch you grow., if you're even lucky enough to have good parents. Everyday anymore all I see is suffering and sadness, hell I am the leader. What a horrible place to be.
I will keep you in my prayers Freya & Mimi. I am very sorry for all of the difficult issues surrounding a parent, Scary stuff right there. ~M~
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Bosum, check into local churches in your area. Some churches sponsor homeless families and get them set up in Habitat for Humanity Apartments so they can get back on their feet. These folks generally have no furniture, nothing. They would welcome a still-serviceable couch or kitchen table and chairs, bedding, pots and pans, dishes, etc. It's a loving "gift" to a family in real need. It's also a tax write off.
In the silver lining dept., most of us Stage 4 gals probably won't ever have to deal with dementia wards and long-term nursing homes...we won't live that long, especially if we've been dx'd St 4 in our early 40s or 50s. Yes, there are outlying metavivors who have more than 10 yrs under their belts, some even had close to 20 before they passed, but that's cold comfort for someone who's 42 yo at St 4 onset. She'll be gone by 62, even if she gets a full 20 yrs! (As a reference, my dad entered full nursing at 77 yo, and my MIL went into care in her late 70s as well.)
Ah, such happy thoughts on a Monday afternoon! I'll shut up now b4 I depress myself more than I already am.
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As far as offering the hospital bed her MIL just died in. Your husband should have said "Oh, no thank you besides you guys might need it for yourselves".
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Bosum could you have a garage sale or donate some of the furniture and other stuff to Salvation Army or Goodwill? I've helped clean out two houses. In the early 90's we had to clean out my grandparents house which was in a suburb of Detroit, and we found out that the village had recently started charging $1 a bag for trash. We cleaned out my Grandparents house in one weekend. They only had a 2 bedroom house with a basement. My Grandparents were 96 and 97 when they passed. They were doing just fine until my Grandfather fell off a ladder a few weeks before his 89th birthday, and fractured his hip. He did start driving again six months later, but then developed osteoporosis and things went down for him. My Grandmother was taking care of him until she fell down the basement stairs at the age of 95 and injured herself. She went out and bought a new snow shovel when she was 93. We tried to tell her that she should hire somebody to shovel her snow, but she replied that you could not find anybody that would do it. My Grandparents when they were still able to drive, loved to hit garage sales, and so they had tons of mismatched silverware and plates. I still have a set of plates, a blender, and lots of silverware that we removed from the house. The stuff that our family did not want, including their clothes, we donated to our church rummage sale. My Grandmother liked to shop at rummage sales, and kmart for her clothes, and she usually wore them until they were falling apart, and so we had to pitch some of her clothes. The rest of the clothes and kitchen stuff and most of the furniture, that we did not want, ended up being sold at our church rummage sale. BTW- The stuff we could not find a home for, we ended up putting it in bags, and storing it in the garage, and we let the family that bought the house deal with it. There was some stuff such as papers that hopefully they recycled. We would have gone that option, but they did not have curbside recycling yet, and we had to clean out the house in two days.
When my Mother died, she had a much bigger house, but we had a lot more time to deal with it. Family members claimed about half of the stuff she had, and then we had a two day garage sale, and got rid of a lot of the rest, and donated the rest of it to the church rummage sale. A lot of my Mothers clothes went to the rummage sale. We found three unopened dress shirts of my Father's that we ended up selling for $1 a shirt at the garage sale. The guy that bought them knew he was getting a really good deal. We also found five wind up alarm clocks and one electric one, and all six of them were sold at the garage sale.
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I'm 42, diagnosed at 41, just 4 months after my marriage.
Back then, it was one of the best times of my life. After breaking up with the man I was living together for 8 years, life gave me the biggest surprise ever: I was finally with a man I wanted to share my life with! Who would have thought, surely not me back then. We were together for a year and a half when he proposed and it seemed like the most natural thing to say yes.
We had an amazing, crazy, funny diy wedding, I was in love, happy, had just signed a great contract for a new work, we had a happy home, our fur babies and were hoping and trying to have our own human baby. Time was against me, so we were rushing and hoping to make it. Our house was open to friends and family, we were laughing, dancing and fooling around like teenagers, planning our summer vacations and doing whatever a newly wed couple does.
Then came cancer.
And all that seems like a life belonging to some other, like a movie I once saw.
Triple lumpectomy, biopsy showed bilateral cancer, docs were pushing for bilateral mastectomy. Depression hit hard. Five months later, and after reaching for at least 6 different opinions from other doctors, I went for it. I lost both my breasts, I lost my new work, medical bills almost ruined us, many friends and relatives suddenly became strangers, our once sunny and happy house became quiet and lonely, the fun times and laughing gave their place to discussing the next test result, the next treatment, the next trip to the hospital and many, many tears. My husband and lover became my caregiver, and our dream of having our own child was taken away from us. I felt robbed. Like some stranger, a thief invaded my place and stole the most precious things of my life.
Right now I'm waiting for my BRCA results and everyday is like another punch in the face. Sometimes I want to run away from it all, sometimes I think my husband would be better off without me.
Thursday is my second appointment with MO to prescribe the dreaded tamoxifen. I should have taken it at least a month now, but I just hate the idea of taking that pill. And yes I know it's supposed to lower the chances of reoccurrence. I also know how many things can go wrong with tamo. It seems completely crazy to me how the on of the strongest cards medical community has to offer in fighting cancer is a drug that could cause more cancer and might keep cancer at bay.
And I just hate the fact that the MO find it appropriate to give me a lecture on why I did not go sooner. I told him I was waiting for the BRCA results but he said it's irrelevant. What I really wanted to tell him was my nerves are a mess and it's only 3 fu@ing months since my BMX and I am trying so hard to be brave and fight and accept all those crazy changes in my life and the roller coaster of emotions and fears and doubts and I wanted so much to shout all this to him but of course I did not. He is just a doctor doing his job. And his job is not to feel empathy. Why should he either way?
I'm tired, scared and sometimes feel so alone words can't describe. I hear docs talking about removing parts of my body like talking about changing my hair color. And that makes me so mad. I am angry. At everything. At people telling me to be strong and fight like a woman. Ha? What the f#ck that means anyway? I'm so fed up with all the positive shit attitude, the pink ribbons, the brave faces, the wear your pink gloves and kick cancer's butt lines, I'm angry and I hate it. Cancer is not bright, it's not pink and it's not kept away by positive thinking. It wrecks our lives, it's a nasty disease, we are not super women and not soldiers, we are human beings fighting the best we can for our life, with an enemy that is evil. Nobody seems to talk about the women who live with metastasis, about the women who are facing death. It's like society hates the sight of sick people, of sickness it self. Who is gonna talk about the ugly face of this story? 4th stage cancer patients are women who also fought and it's not their blame that things did not turn out well.
I'm angry that it seems community and society and docs seem to expect from us to be happy and grateful and pretty while bold (come on, girl, draw those eyebrows back, and for God's shake, wear some blush you are so pale you look sick), and brave and fighters and survivors.
Sorry, but there is no "good" and no "lucky" kind of cancer. Cancer is cancer and that's it. And it makes me mad how they minimize the toll of treatment, how they falsely perpetuate the idea that if you are fighting hard enough you are going to survive, how patients are pressured into looking beautiful like cancer is a piece of cake, and how it encourages us to make others feel good about our bad situation.
And finally, contrary to the popular belief there is still no cure for breast cancer.
Sorry if all my rant seems full of negativity, believe me it's not negativity, it's frustration, anger, agony and anguish. I'm reaching my limits.
Thank you all for letting me vent here and I hope I haven't offended anyone.
Hugs to you all.
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Dafne~ I have felt everything you just said I live it everyday. I live in a torturous emotional state and fear of loss that has occurred already and for loss that hasn't even occurred yet. But is lingering. I am so sorry. Because I am living it too. Hugs right back ~M~
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Lita, your example about stage IV in your 40's reminded me of a conversation I had today with a coworker (btw, I was diagnosed stage IV 7 months ago at age 41). I was explaining to this person that while out recovering from my lumpectomy, I also had to get my two big toe nails removed due to chemo damage. She asked if they would grow back, I said yes and she responded, "oh, good, you wouldn't want to have no toe nails for the rest of your life", I said, "well, I may not live long enough to care about my toe nails". She realized and apologized but it's ok, I just enjoy watching her put her foot in her mouth, lol
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BB- Sorry to hear about your mom. Maybe just let her believe you will distribute all her stuff in the fam and tell them not to tell her otherwise. It's amazing what older people stress about that many of us wouldn't. My bff's mother is in assisted living. She's 90 and weak, arthritic but amazingly enough doesn't have any chronic diseases. Through her pain she stresses so much about her stuff too. She's never going back to her home but she too is talking about leaving this and that and to whom when in fact no one wants her "junk." In fact, there have been a few garage sales where most of it is gone now. But we want her to comfortable, mentally too, so everything is ok, no prob.
I simply cannot imagine. I think most of us will be faced with that one day. I certainly can barely take care of myself and same with my bro. Best wishes for a peaceful transition for you all.
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Eloquent, Dafne.
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Tried to write a rant on my tablet, and then it disappeared. Ah, I'll never learn, I guess. (Note to self: If it's important and you think it's gonna be a long one, write it in Word, temporarily save, then copy and paste...it's not rocket science.)
Sigh…so I'll try again.
I'm pissed and despondent. I was just given clearance by my MO to be able to do "light" gardening again. Hooray, I thought. I can spend a little more time outside now, as long as I'm very careful. So I waited for a nice, cool day, in the upper 70s, made sure I ate a little something first, drank fluids, wore a wide-brimmed hat, and went out when the sun wasn't at its apex. Well, today I wasn't out there more than maybe 15-20 minutes (and my DD was with me, picking up the prunings so I wouldn't have to bend over so much) and then I got SO weak that I was afraid I was going to either pass out or fall down. I had to stop and go back inside. The same thing happened yesterday when I tried to mop the kitchen floor. I was only able to get about ¾ of it done b4 I had to go sit down, stomach aching and covered in sweat. And the day b4 that, I was barely able to walk a piece of flat trail near my house with my DD before getting really light-headed and weak. And this is my "off cycle" week, for criminy sakes!
I HATE THIS!
My indoor activities are also limited because of my hand-foot syndrome. I can't knit, crochet, or even sew/embroider anymore because I don't have any feeling in my fingers, thanks to chemo. (I make a lot of mistakes when I type, too, because I can hardly feel the keys.) I can't read for more than 20 minutes because my eyes get so dry and blurry, despite eye drops – another side effect from endless chemo.
Either I can barely do anything because I'm in pain, or I can't do very much because I get too fatigued, or I get nauseated (which I am right now as I slowly sip a ginger ale). This is my life with Stage 4 now…until it ends.
It wouldn't be so bad if I were "legitimately" retired and healthy…I could at least DO some of the things I've always wanted to do during retirement (turn my back yard into a gardener's paradise, go hiking, do some crafts and learn to quilt, etc.) Can't do that now. This is DISABILITY, ladies and gentlemen! How am I supposed to even hold down a part-time job when I can't even scrub a floor, prune ONE darn bush, or even hold a pencil? My hat's off to any Stage 4 person who still works thru all this…and I realize some of them HAVE TO just to keep decent medical insurance and pay their co-payments. God bless them. God DOUBLE bless them! There's no way I could do it anymore.
I can't help thinking, what's going to happen to Stage 4 folks when Medicare goes away? What happens to Stage 4 folks who're too young to get Medicare and they can't work anymore (like me)? What if they're divorced or single, and their savings are running out, and they don't have anyone to help take care of them and pay the bills? Will they just have to die at that point? Just think, there are homeless people out there who are suffering with cancer, and nobody knows about them. And then one afternoon, or evening, they die in a doorway or under an overpass.
Maybe I should just shut up and suck it up. "There but for the grace of God go I," as they say. It could always be worse. I still have a roof over my head, a La-Z-Boy, and a TV to watch – but how much TV can one watch b4 one goes insane?
Yes, it could always be worse, but I think it's pretty bad right now. My life, as I once knew it, is over. All I feel is "saudade," (pronounced "saw-da-jee") a Portuguese word that roughly translates as the sadness, melancholy, and despair one feels after losing something that will never return. After 15 months of this Stage 4 sh*&, I'm so weary of it. The only thing that breaks up the monotony is going to dr appts, blood draws, infusions, and scans.
That's a hell of a life, isn't it?
No, this is not a life. It's just existing.
And yet I fight on. I don't do it for myself. I do it for my husband, my daughter, my dog, my friends, my brothers. And I also fight because of YOU guys. But some days, like today, it feels like the weariness and despair is winning. I have the treatment/outline of a third novel on this laptop – even the first few opening chapters, written, edited and re-edited – but I haven't worked on it since my Dx. What's the point? I ask myself every day now. Will I even live to see the third one published? I can't even type for more than 30 minutes b4 my eyes give out. I'm drained. All inspiration has left me.
And yet, that fuels my anger.
Anger is a good thing. It's the only thing that keeps me fighting. I fight with tears in my eyes…for all of us.
Thanks for reading.
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we love you Lita~ gentle hugs sister~
~M~
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Lita- Have you looked into applying for social security disability? From what you write, you'd probably qualify on first try. Here is my thread I posted here with a link to it.
And I wouldn't worry about Medicare going away. It's not going away. They can't even get Obamacare 'fixed.' In the process the gop is losing ground because of it so I'm not worried about Medicare, and I'm on it at age 52 after having received SSDI after 2 years. I'm not on it for cancer but I have seen stage IV who cannot work get approved quickly.
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Artista, yes, I'm already on SSDI. Unfortunately it doesn't cover much out here in the Bay Area. State Disability paid a little more, but it runs out after one year. I doubt that I'll outlive my meager savings, but I do worry about people who haven't paid a lot into their savings, especially ladies who get Stage 4 in their early 40s.
Stage 4 is a catastrophic illness which can drain one's resources very quickly.
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I hear you on what SSDI gets you in the Bay Area. I'm next door to you in Fremont. It doesn't even cover my rent of $1795! But it is better than nothing I guess.
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