STEAM ROOM FOR ANGER

Freya244117

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.

Micmel

Good god!!!! Um

No freaking way. Go MIL. I am sorry though for the crap. But isn't she precious? Hugs ~M~

ShetlandPony

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.

Freya244117

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!!

Freya244117

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.

Micmel

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~

Mimi2kleh

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.

Micmel

💔 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~

Lita57

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.

Meow13

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".

peaches1

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.

Dafne

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.

Micmel

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~

illimae

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

Artista928

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.

ShetlandPony

Eloquent, Dafne.

Lita57

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.

Micmel

we love you Lita~ gentle hugs sister~

~M~

Artista928

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.

Lita57

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.

Artista928

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.

Stllivin

Hi Everyone- I need to rant and I'm pretty sure you will all understand. I finally am getting used to my Ibrance and Femara and Xgeva being a part of my life. I'm getting used to all the blood draws and all the up and down emotions. Yesterday, I do my blood draw, the results come back similar to the last few months. I'm feeling good about it. I get up and get moving today trying to be my old self. Then the MO's office calls. My potassium is high (has been for months - everyone was aware of that.) I have to go get it retested tomorrow. It is in the range my MO was comfortable with since I had an issue within it late last year. No one can find any reason why it runs high. I don't eat any of the foods that contain potassium. I am even careful with the few processed foods I choose to eat. UGH! Now I get to go get stuck again. Sure hope it won't take another 4 tries! Will it ever end?

Thanks for listening.

Suz

Mimi2kleh

Because I stayed home many years to raise my boys, (I worked before and after) I didn't pay much into SS, my disability payment is a whopping $839 a month. Who the hell can live on that?! Doesn't even cover the "low income" apt I have for $970 a month. I had to get Food stamps, $155 a month. And that is for food only, you can't use it to buy tp, toiletries, vitamins, paper goods, etc, nothing but food. My piece if shit ex, who I was with from 15-40, swore up and down that he would take care of me the rest of his life. Well his GF, that he cheated on me with, must not have liked that, because soon after he stopped paying my alimony. He said he couldn't afford it. He since then married her, and had a kid (the same age as our eldest grandchild), and she stopped working. They eat out always, take constant trips and cruises, spends hundreds on presents for everyone, trying to buy their love. And watched me lose my beloved house, sell my belongings, and fight cancer, without a word. I stood behind him for 25 years, and helped build him up into a success. And my short lived life of luxury became hers. Never in a million years did I think I would end up on Disability, food stamps, and Medicaid. And now Trump wants to cut all those programs. How many ignorant people think all recipients of these programs, are worthless and lazy, trying to get a free ride. I shudder to think of how many are cancer patients, and of how many have perished because of no insurance. I tried as hard as I could to keep working. So many days, crying at my desk in agony. Always so tired from the pain meds. Silently struggling with chemo brain. Hiding it from everyone, and doing my job well. Then work decided to make my life miserable. Everyone said they were doing it to try and make me quit, because my insurance was costing them too much money. They finally broke me, and I went on disability. You all know what a pain getting disability is, a long, tortuous process. And losing my house, and selling most of my belongings, and not know where I was going to live, was so very hard, and stressful, and depressing. I ended up renting a room, in a horrible situation. Man was I on the verge. Then the first luck I've had in forever, my name came up on the waiting list, an apt was available, and it was a low income unit. Just when I got settled into this new apt, and food stamp living life, the Cancer decided to rear it's ugly head again. I never thought about getting mets, that's what I get for not thinking! And I was like most, thought I had done everything I was supposed to, and had very little odds of a recurrence. Think pink and all that crap. I had no idea what all mets entailed. VERY quickly learned it's a nightmare, a life sentence, with no parole. And it is so sad, and sickening, the number of Stage IV patients out there, I can't even fathom the number. How can they not have found a cure after all this time, with so many, many years of research and trying?! You really have to wonder if the big Pharma industry doesn't really have the secret up their sleeves.

Mimi2kleh

Good luck Stillivin.

Huge hugs to you Dafne and Lita.

I wrote a poem here in this thread, including so many of the same things you are going thru, I so understand... https://community.breastcancer.org/forum/102/topic...

Dafne

Mimi, Lita you are in my prayers. Stlliving vent as much as u need. We are here.

Lita57

Mimi, I'm not trying to be a C.U.Next.Tuesday here, but I think former husband needs to honor his original promise to you..

Have you tried forwarding some of your bills to him? An itemized list of monthly expenses you need help with? To heck with his new wifey!

Was there any other provision in the divorce settlement? Would a pro bono family attorney help?

If that doesn't get his attention, try forwarding some links to urn sites, caskets and funeral home sites to him. This is no bloody joke. Write a simple sentence, "IF YOU WON'T HONOR YOUR PROMISE TO HELP TAKE CARE OF ME WHILE I TRY TO LIVE WITH THIS DISEASE, CAN YOU AT LEAST TAKE CARE OF MY BURIAL/FUNERAL EXPENSES?" Indicate which urn or casket you'd like, where you'd like to be buried, etc.

If he won't even help with that, instruct your adult child to save some of your ashes so he/she can go over to his house and literally THROW THEM in his face, and maybe throw some in new wifey's smug face, too.

Mimi2kleh

"5 hours ago BosumBlues wrote:

Mimi, other than the mets, your story is mine. "

So sorry BosomBlues.

Thanks Dafne.

Lita, you're not saying anything that I haven't heard before. There is a whole lot more to all of it, too much to type, but there really isn't anything I can do.

Micmel

My ex slugband has felt the karma and it does happen. He still lives in his mommys basement, has no worth as far as assets, because he blew everything, while I maintained a stable home for the kids, and he has had one relationship with a little girl who was almost 20 years younger (his own daughter is 21 and this little girl was 26, he is 48) it lasted like three months and then alone again. I may have cancer but I have had a happy life, my DH is my dream and my world. I wouldn't ever change things, even if it meant not having cancer, if I couldn't love my DH that I am married to now. That is how sure I am of this man I have in my life now. Going on 15 years now and the x slugband still lives in his mommys basement and is growing old alone. It may take time. But the circle Does come around. I have however also worried if I had done something,and this cancer is my payment back. So. All in all , Life can really suck ass. The good thing about that is we can buy chapstick. And on we go..... ~M~

I pray for us all.

JKL2017

sas-schatzi, thank you so much for starting this thread. I just returned from vacation with an unwelcome souvenir - lymphedema - & I really need to vent.

Do our doctors realize how many of us develop LE? Do they understand what a profound effect it can have on our lives? No one mentioned LE before my treatment. If I had not found a pamphlet in literature provided by the hospital, I would have been unaware of its connection to breast cancer. When I asked about it, none of my doctors felt that I was at risk for it (I had only 3 nodes removed). Even so, I followed every recommendation for avoiding LE. Despite that, I now have an arm that will never let me forget that I had BC. I wish I had been better prepared for the likelihood of developing LE. Maybe I would not feel so blindsided. Or maybe I would have made other choices in treatment. I'll never know.

I feel like my life has been hijacked; everything I do is driven by the bitch that is BC. Instead of spending time with friends & family, I see a BS, an RO, an MO & an LEPT. Instead of enjoying retirement with my DH, I hold my breath waiting for results of Oncotyping & genetic testing. Instead of traveling, I do physical therapy, lift weights & exercise regularly with the hope that I can avoid the osteoporosis & osteopenia commonly caused by AIs. And (maybe the hardest thing of all) the people I love & need most just don't seem to understand why I am more upset than I am grateful!

Surgery & radiation went well & were in my rearview mirror. I started taking Anastrozole in May & had gotten through some pretty brutal short-term SEs. I'm coming to terms with the long-term SEs & was starting to feel more like my pre-cancer self. Finally, the emotional roller coaster seemed to be settling down & now this! I just want a day in which I don't have a single thought involving BC. I just want BC & her annoying minions (cording, seroma & lymphedema) to give me back my life!

Rant over. With all that toxic anger/sadness (a now too familiar emotional combination) out of my system, I will go to the Lumpectomy Lounge & calmly seek information about how to deal with LE.

One last thing ... I know that my situation is minor compared to what many of you face every day. My complaints pale in comparison to many above (Freya, my heart breaks for your family & I hope you find a resolution that brings you all some peace. In the meantime, you're in my prayers). I hope I find the grace so many of you already possess. In the meantime - JKL (just keep living)

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Micmel

Cancer is NEVER minor no matter what the prognosis. Some people may get lucky, yeah, and find it way way early to where they can get rid of it. But in my research, and after everything that had been thrown at my cancer, because I am so young, the shit spreads, the shit just spreads. The shit learns to hide and it stays there until the perfect storm unleashes another round of hell on you. I myself went from stage two to stage four in two weeks. So.... shit can happen. The day I was diagnosed, I had ran 6 miles in under an hour. I was in by far the best shape of my life. And WHAM!! Not anymore. Now you're going to look like you aged ten years in one year, your skin is going to start to age also, you're going to be thrust into menopause , your hair ? Oh kiss the stuff goodbye, we will be taking that left breast, never to be heard from again, you're going to have neuropathy,badly, you're also going to get lymphedema, because you had every freaking node out of your left arm that there is. Your flat toned stomach will be left in tatters with a resemblance to a roadmap of Texas, and you'll have this third eye thingy installed in the middle of your chest, we call that a medicine port, you'll be needing that for the rest of your life. But we are going to get aggressive with this because you're so strong. Oh never mind that train called chemotherapy coming down the track, just Buckle up because you can't get out of the way. Once that's done... oh dear 9 rounds of more chemo, there go my fingernails, the only thing that made me feel feminine anymore, sure why not take those too! WOuld you lookie here, those buggers ended up in your bones, only a few spots, but you'll forever, yes FOREVER be in treatment. Sign here....... see you in a month to see how you tolerate!! NEXT..... it is a bitch. I agree it's not breast cancer. It's bitchcancer. Or beast cancer. Or bonecrushing soul beating life stealing lovebreaking emotional stripping mind numbing body disfiguring beauty ripper cancer. It's that simple!! Praying for everyone as I always do and always will. ~M~