STEAM ROOM FOR ANGER
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That's the truth Lita.
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runor, you are a blast, wish you were close by so we could get together to lament and curse and laugh about the friggin absurdity of the whole stupid bc industry mess we have unintentionally stepped in. It is a stinking pain in the ass the way we are, at times, brow beaten to be cheerful, and "" GRATEFUL " for what we have learned
I have learned a whole bunch of things I would much rather not know.
- My husband is an ass. I might have thought that when the kids were small, but now it is confirmed.
- People I thought were friends abandoned me just when I was suffering intensely from rads burns all over my chest and back, when I was having reconstruction surgery after surgery.
- I really thought my doctors had a fucking clue. Now I realize the whole thing is a crap shoot.
I also learned to not put up with self serving nonsense, and only keep those in my life who contribute in some meaningful way. ( My dh is still here on sufferance, and he does pay the bills. ) I dearly wish I could go back to the delusion the rest of the world lives in, they will die someday, but no worries, that day is far, far in the future.0 -
Oh my God yesterday was the day from h*** I don't know what crawled up my husband's butt but something did and it wasn't good. He snapped at me over something stupid and made nasty comments and walk past me with the such an evil look on his Face. Needless to say he didn't speak to me for several hours yesterday. Then he got over himself around dinner time and everything was good until my daughter my dear daughter texted that she was on her way over here to talk to us. Well that's really when the day went To pot. Apparently my husband's been borrowing money from her and I didn't know about it and it was more than she could actually afford to lend him. now I'd thought he'd been paying her back but obviously he hasn't been.
So there was a big blow up here last night between him and her all over her crying. the whole situation got her upset and she was crying...he can't handle tears From any woman especially the if its from me. So now we're out a brand new level of yelling Anyhow it all ended up with him storming off to the bedroom her going down to her room to pack up all her stuff and go live in her car and threatening to give her soon to be ex husband full custody of her kids.
I'm just having a really hard time handling all this with chemo brain and bloody noses and feeling tired all the time I'm just so drained. my husband's never been an easy man to live with we've been together for almost 18 years we've raised our children from teenagers to adults who have their own families and their own problems But in the last Year m his temper is just gotten so much shorter and at times he's unbearable. He's a bully and this has gotten worse over time. There's no talking to him when hes upset because then he takes everything you say personally and God forbid you say he did something wrong because now the whole situation is totally blown out of proportion and all he can say is it's all my fault it's all my fault everything's always all my fault.
Thanks for letting me vent. I have to go to chemo soon and I'm NOT looking forward to it at all 8((
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Oh Nanette~ Holding your hand!
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nanette7fl:
Sorry you are in such a bad living situation. Can you and your daughter get a place together? I know it's hard not to sometimes but you don't need to engage in the fights he picks. His bad day doesn't need to become your bad day.
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I get annoyed with my husband sometimes but he's an angel compared to what some of you ladies put up with.
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Mine, too. My DH can drive me to distraction but at the end of the day, he's a keeper. I feel bad for those of you who have to put up with so much shit. You have enough on your plates without putting up with them being big babies. Could it be that maybe they are just so scared shitless that they are going to lose you?
Sending you all huge hugs. We've got your backs.
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Nanette, you husband sounds like an abusive turd, if you don't mind me saying so, and you definitely don't deserve to put up with all the stupid crap that big hairy baby wants to dish out. He sounds like my dh, and I have learned to protect myself, to lessen my stress. Just have to walk away. I doubt the Drama Queen will continue the ranting and raving like a freaking maniac if he has no audience to browbeat.
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Hello all! First post here but after the day I have had I just feel invisible to my nurses and doctors. I have a port incision site that is not healing up so now on my second antibiotic with the warning this will cause diarrhea. Because I don’t have enough of that already and I really just had my second AC infusion today. I told my two usually wonderful nurses my port did not feel right but I was just ignored. Finished up developed pain in port site an super rapid heart rate that felt like my chest and neck could explode anytime. Contacted after hours clinic and waited two hours. I had to call them back just to be told it was up to me. Gggggggrrrrrr?! The nurse was not sure what I should do. Go to er for piece of mind or try to make it through the nigh. I am new at all this and every little thing scares the crap out of me. I was looking for a little guidancefrom my medical team but it was nowhere to be found. I have decided to wait it out and go somewhere in the morning. I just needed to vent because I was an emotional mess.
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Nanomom11:
My port incisions were slow to heal during chemotherapy so I kept them dry and covered with a sterile covering. The first one healed with a fistula just because of tight skin, and they had to replace the port due to infection risk, and with the second port, the incision site healed but I had skin erosion and the port had to again be replaced. In both instances, I sent a photo to my MO and she got me in with the department that placed it.
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My port did okay. It was installed 2 weeks before chemo. It did take a bit to heal up good. I still have a purplish colored scar where the incision was made but as my daughter tells me "Mom your favorite xo is or is purple' lol
In the beginning it was difficult to sleep as I sleep on that side but i did find some small (4"x6") super soft pillows my granddaughters were using for their dolls that got borrowed.
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Nano. When in doubt get it checked out. I had a port problem. Ended up in the hospital . Doctors argued but finally removed the port. I had a thoracic surgeon put another port in on th opposite side. It worked well for the rest of treatment. Hope it resoves. It’s awful to go to ER now because of flu etc but better get it checked . If you have a fever definitely go and call oncologist service.
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Hi ladies. I am still trying to get someone to look at my port so I may be switching breast surgeons because the first one I think is tired of me. Today has been the best day with it but still uncomfortable. I also developed some kind of angry blood blister where they accessed it so now they have to look at that too. Maybe the last two days on the antibiotics will help. Thank you guys for all your imput. It really helps ease my anxiety
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Nano, sounds like a BS switch may be in order. Its not their place to be tired of anyone. You should never have to feel that way. You have enough to worry about.
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Do you know what infuriated me today? I just saw a commercial about the treatment of a crooked erection!!!!
Really?? I cannot believe money is being used to study this? I’m not saying sexual function is not important, but we already have millions of dollars spent on erectile dysfunction!
I truly believe that if breast cancer was a male dominated disease we would be much further ahead in finding a cure. I’ve said this before but my dear cousin died of bc almost 30 years ago at the age of 38 after a 10 year battle with this horrible disease. Aside from the fact that she had a radical BMX her treatment was not much different than it would be today. We need better treatment options and yes a cure
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dtad:
There are definately instances of male bias in our society, and medicine as well. Girl's and women's pain is not taken aa seriously, many aspects of female reproductive health are viewed as intangible and neglected in both research and clinical settings, most medications are tested exclusively in men, and most diagnostic standards are determined from exclusively male subjects.
But when it comes to cancer, men get cancer more often and breast cancer is among the most funded of cancers in terms of research
What gets me is, when a guy has arousal issues, it's considered a medical condition, but when a woman has arousal issues, it's considered psychological. The IDC code women get is for "Hypoactive Sexual Desire Disorder" which is a condition defined in the DSM (bible of psychiatric and psychological disorders).
But breast cancer gets a lot of funding.
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Thanks for your reply. However I don't care how much funding breast cancer gets! Its just not enough! I'm frustrated that we are not further along!
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dtad:
I get frustrated that we are not farther along as well.
With immunotherapy and gene editing, I think that we are on the cusp of some very big advancements in cancer treatment though.
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Rant.
I hate the fear. The unwanted guest that moved in. It is like a ticking clock. Sometimes it fades into the background and there is a small window of blissful 'not thinking about it'. But when something goes wrong, when my guts are off and I have weird back pain or a headache that lasts for days, I hear the BONG! BONG! BONG! of being on the clock, the countdown is on.
I have been coughing for about 6 months. I have ignored this. I have ignored this because I hate and resent the hypochondriac I have become. Is it cancer? Is the sky falling? Well, the sky fell once and we all know damn well it can fall again no matter what your statistics say. What I hate is how alone I feel with mounting terror.
I remember back in 2017 when all this shit started. I was wiped out with anxiety, dread and despair. I couldn't function, eat or sleep. I dragged myself around, stooped and slack faced, feeling like I was being led to the gallows. Friends looked in from the outside with worried expressions, doing what they could to help and support. And now, I am feeling the same way. I am feeling the dread and anxiety and the mental screaming NONONONO! But I feel like I can't tell anyone. I feel like I am a burden if I say to someone, my god, I am so scared. I feel like they showed up once and gave a shit, but how much of this can they keep showing up for? How many possibly false panics can anyone else give a shit about? If I have lung mets, I know there will be support. But until I know for sure I feel like I have to keep it to myself and bear this crushing misery on my own. Of course Hub knows, he looks at me with worried eyes and goes off to work as he usually does.
Life rolls on. It's a shock and maybe a comfort, maybe a necessity. But my world teeters on the edge of coming off its hinges entirely. It is a painful place to live. And I feel that I can't say anything to anyone, because I am just being paranoid or looking for attention. How I long for the days when an ache was just an ache and not the harbinger of The End. And this might not be the end! Or it might be. And until I know for sure I have to keep it to myself. That's how it feels. Like the enormity of this misery is too much for anyone else to bear, it's not their problem, it's mine, so shut up and take your problem where it isn't blocking anyone's view of the future. All true. It IS my problem. I hate feeling alone with this. I go to doc in 10 days.
I hate this. I hate it for all of us. I don't think I"m alone in this (that's why I post here) although in this quiet, empty house, that's sure how it feels.
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hello everyone: i am new to your blog. I am a breast cancer survivor, 6 years now, but I find a need to express my anger and disbelief that my sister who is stage IV breast cancer and in her bones does not care to learn or acknowledge anything to do with her cancer. she is going day to day and does not have a care in the world to want to live longer, to better her health. She says she wants to live but has made no effort. she thinks the hormone and ibrance treatments are going to keep her alive. she was not offered chemo and had only a 6 week radiation treatment to one area of the spine, they didn't even remove the cancer from her breast. She is only being given quality of life treatment. our mother had breast cancer and she is a 41 year survivor. as I mentioned, I am a survivor too, but the both of us had regular mammogram screenings and we are continuing to live. knowing that your mother and sister had cancer, wouldn't you be determined to screen and hope that all is well or catch it before it is too late? No, not my sister. I have begged her for 5 years now after my diagnosis and she always promised. 1 and 1/2 years ago she had a mild stroke and incidental findings on CT scan showed numerous tumors on her spine and skull. she was quickly diagnosed when a lump was felt and found on PET scan. when asked how long she noticed this lump, she lied and said about a year. now, even if it were found a year ago wouldn't you want to have it checked out, no, not my sister. the hospital doctor told me that with the amount of tumors, this disease was evident for least 5 years. But I can't tell her, told you so, or why didn't you listen for the last five years. Jesus, I am so angry. I am now her caregiver. I haven't a clue as to how long she has, what I am to expect down the road, how much pain she will be in, I am not to ask. and everyday I keep thinking I told her to get that mammogram. She just does not want to talk about anything related to her health. she argues with me, and keeps stating that we talk as if she will die tomorrow. What is wrong with her? she is a mother and grandmother. Jeez, just those two things would make me determined to want to live longer and that maybe I should change my bad habits, no, not my sister. her husband died 3 years ago because he had the same attitude with his life. he knew he was sick and kept it all from her. she was so ignorant to his impending death and just did not know how sick he was. blamed it all on his drinking and smoking. does she not watch TV or read the news, drinking and smoking can cause death. he was her mentor and now she is following in his footsteps. I can't get through to her. when the time comes when she is really sick, too sick to care for herself, what will she do then? I can't watch her die, but I can't make her see. I know I am only supposed to vent and move on, but does anyone have any suggestions? I am thinking intervention with the family. maybe her granddaughters can beg her to be open to want to change but they are still too young to know that grandma is sick. Sign me,
Sister who cares too much to want her to go too soon.
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King, what is it you want her to see? If she is taking Ibrance and a hormonal treatment ( letrozole or faslodex) that means she is under medical care. Do you want her, in addition to that, to worry a lot and be exacting about her lifestyle? That will not cure her. Let her go on day to day feeling ok. If you want her to do more healthy lifestyle things, well I don't think she will listen to you or talk to you about it if you rant and blame.
It sounds like you think she is not doing appropriate treatment, but in fact this approach, with no chemo or surgery, is a standard of care treatment for stage iv with bone mets. It is not giving up. Stage iv treatment is generally aimed at giving the best quality and quantity of life. Chemo is probably not appropriate right now (maybe later), and breast surgery may be pointless as the cancer has already escaped the breast and surgery has its own risks.
Mammograms do not prevent breast cancer. They don't guarantee that the cancer will be “caught early" and cured. I feel your frustration, but the past is the past. Move on from here and enjoy your time together, which could be many years of her feeling fairly well. Let it go, and be present.
I know your feelings of frustration and anger come from your love for your sister. My suggestion is to trust that she is under medical care, so she is not denying her condition. Let the doctors worry, and you just be her sister. Lead by example with your healthy lifestyle but don't nag. Then when a time does come that she needs care, I think she will be more willing to involve you and talk to you about it. That day may come, but it's not today.
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I agree with Pony. She seems to be receiving the appropriate treatment. As much as it's understandable that, because you love her, you'd like her to do more and be less carefree, I am going to be blunt here: it's her life. The bird has already flown out of the cage. She seems to want to enjoy whatever life she has left for as long as she can do it. Try joining in and make beautiful memories instead of trying to drag her down in the pit of despair. As for the false sentiment of prevention mammos give you, my own sister is probably one degree of stupidity above yours. She says she doesn't want to have mammos because "she would rather not know that she has it", as if miraculously her not knowing would make the cancer disappear.
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ShetlandPony said it better than I ever could, but I wanted to ask - a family intervention to tell her what exactly? There is no cure for metastatic (Stage IV) breast cancer, it is going to kill her. Treatment at this stage with the cancer in multiple locations is strictly palliative (quality of life) because there is no cure. All she can do is follow her doctor's treatment advice and live as well as she can until then. Hindsight is 20/20 and victim blaming doesn't do any good for any one involved. All it does is create resentment for both.
As Shetland pointed out, mammograms don't always catch it early. I'm one of the "lucky" ones with a rare type of breast cancer that doesn't show on mammograms and has no symptoms until it is advanced. My doctor told me it was likely growing for years without any symptoms. I can't tell you how angry it makes me that the first words out of the mouths of so many people is to ask if I had been skipping mammograms, as if this is somehow my fault. I was healthy and active, never been sick in a day in my life until my diagnosis. No surgery for me, my doctor said it would do me more harm than good. The only reason I'm having radiation now is because I became chemo-resistant.
Every case is different. It sounds like your sister is following her doctor's plan with the Ibrance and hormonals and there isn't much else she can do. Taking good care of her health won't make her live longer unless she's frail to begin with, but it will put her in better shape to withstand the treatments she'll be in for the rest of her life and handle the side effects.
All of those concerns you have - how much longer she has, what to expect down the road, how much pain she'll be in - she has all of the same concerns and it's much scarier for her because she's the one who is going through it. Be there for her, tell her how much you love her, ask her what she needs help with, do fun things with her. Please don't blame her because all you'll do is push her away when she needs you the most.
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One other thought, King, after reading Lori’s comments: Maybe you could talk with a social worker at your or your sister’s cancer center, to get support and education for yourself as a sister of a person with stage iv. It might really help. Family members deserve care, too.
I also want to point out, as there is sometimes a misconception around the word “palliative”, that palliative care has to do with lessening suffering from the disease or from treatment; it does not necessarily mean the end is near. Stage iv treatments DO have the potential to extend life, in addition to promoting quality of life. I believe that has been the case for me.
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I had doctors several say it was a cyst, I had another say oh stage two or three worst. Well uh no.! Stage four denovo out of the gate. Aged 45. Do not pass go. Do not Collect $200! Truly screwed. I ran six miles everyday and didn't have an ounce of fat on me. Cancer has no real blame. It just is. Smoking sure could cause it ( am not a smoker) drinking again could contribute (not a drinker either) Now I sit and watch my dying father who did drink and smoke his whole life. He is 77. Weighs 106 lbs. he is NOT dying from cancer. He is dying from other reasons. Cancer knows no rhyme or reason because there isn't any in my family. Just me. My worst nightmare.
And if anyone wanted to tell me how I should be living knowing I am dying. I think I'd have a hard time accepting that in my life. And I'm the one with cancer please let me live and die on my terms. One thing you can't play with, once the diagnosis is handed down is time. Enjoy every minute. Love on her. Because the chances are really that nothing she would have done would have changed the course of the path evil cancer chooses. You just baton down the hatches and fear and terror are front and center. She is mostly likely happily living in denial. And she has every right to be there. She is the one who is actually dying . I am also stage four bone only. I live every day in terror. If you're a survivor. Then you're one of the lucky ones. Can you imagine how she feels knowing that she wasn't? I do. Just love on her. Then when the time comes and she isn't a survivor, sisters love will have the memories to hold onto. Not questions with never any answers wasting time. My father and I were estranged 16 years now he's dying. I am by his bedside. Because I only have this chance to make my peace. This is all I get. My last chance to feel like I did what I could to set things as right as they may ever be. I don't envy anyone dealing with this. Cancer survivor or caretaker. It's all a huge big pile of shit !
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Runor, thank you for your "rant". It was exactly what I needed to read at this moment in this quiet house.
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kingjr66:
I understand your frustration, and I don't understand people like your sister who do not care to be on top of their medical care. But she is how she is and now it is what it is.
As others pointed out, she is under treatment, and though she is not as proactive as you might be with her medical care, and may have neglected her medical care in the past, she is not neglecting it now. I don't know if there are other treatments out there for her but her oncologist has probably discussed treatment options with her and she has decided how she wants to live out the remainder of her life.
I think you should just try to enjoy the time you have together.
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King Jr, I am glad you came to vent with us. As hard as it is to be the patient, it is hard for a caregiver. Your sister is receiving the appropriate care for her Dx. If she finds joy in her life, let her have it. You need to practice some self care. A social worker can help you with your stress about your dear sister.
You did the right thing coming here. You guys still need each other. Remember that your cancer being earlier stage meant more aggressive treatment to cure you. As another person said above, Stage 4 is incurable. Our treatments are focused on quality of life. We need gentler treatments since it never stops.
Enjoy your time with her. Go out like you would normally. If she hasn't mentioned her cancer, that is quite alright. Follow her lead. You'll have good memories instead of conflict. Look after yourself by venting off your stress here or even look over the threads for caregivers. I did not get much chance to check them over before my mom died last month but they would help. Good luck and hugs.
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The wisdom and compassion and acceptance of reality in all the above posts rocks me back on my ass in admiration and respect. RESPECT!
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Heh. Talking about the value of mammograms "catching it early". The mammo I had 6 months prior to diagnosis showed nothing. Ultra dense breast tissue. The BOS said it was there for at least 10 years, if not 20, as extensive non-invasive, and just started going invasive in a few months. It was just my family doctor's trust in my instincts when I went to see him, because I was terrified and convinced it was there, that made him skip ahead and order a diagnostic mammogram that made them find it when they did.
On the other hand, I have a good friend who has been diagnosed with the worst form of glioblastoma a bit over a month ago. She had surgery and is doing chemo and rads now, but even if she will be able to withstand the treatment it will mean that instead of just 5-6 months to live she might live 12-15 months. Her and her daughter have been estranged for over 10 years and had started talking again around Christmas. The daughter flew in from another state to be with her Mom for how much it will take. It's very hard on her, as my friend's cognitive and behavioral functions are degrading every day - she has become stubborn, hard to deal with, impossible sometimes, as her brain is slowly being eaten away by cancer. But her daughter is there. She cries, gets her feelings hurt on a daily basis, but is there, with compassion, care and love because she knows that is all the time she has left with her Mom.
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