STEAM ROOM FOR ANGER
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Thank you all for letting me vent. I don't really know Gracie on the Liver Met Thread. She is one of us - virtual friend and MBC sister. When I read her post about the liver failure and hospice it just got to me. For her - she was just diagnosed 2 years ago with this horrid disease-, for her family, and Yes I thought of myself. Why does this awful disease have to prey on us?? I know we hope for a cure, and say "we are living with MBC and not dying from it" , and that it can be thought of as a "chronic illness". But ladies are dying from it. Which one of us is next?? How long do I have?? So sad.
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I just say I am living with it because it helps me to focus on just living and not dwell on what I have lost. I am very pragmatic and unemotional for my own cancer after dealing with it going into 4 almost 5 years.
I have to be careful not to allow myself to go into dark places because it is so debilitating to get myself out of them and I live on my own and not very social (my choice). I have my older brother and his family but no close friends. Tons of acquaintances though.
Overall, I just found that when I thought "I'm dying of cancer, I could not get motivated to enjoy my life at all. By saying I am living with it to myself, it helps me get out of bed, exercise and take care of myself. I also don't focus on my cancer either.
I do however resent it when stage 4 cancer is presented as a chronic illness. Until there is a cure that will stop us from dying, it certainly is NOT curable and eventually will be terminal for us. We just don't know how long we have. I also do NOT want to know how long I have left.
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Mara- I know we all have our own ways of dealing with this. And none of them are wrong. Everyone has to handle it the way that is right for them. I don't judge anyone. I feel I am a realist- I will die of cancer someday. Yes it gets to me sometimes,heck a lot of times. But I still get up every day. I still clean my house and go grocery shopping. I am going to a cookout this evening. But golly, I have cancer. Just seems so unreal sometimes. So unreal and so sad.
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I totally agree with you Candy. Just from some of the people I know from the cancer clinic some are very dour, negative and yet I still see them hangin on without looking worse for wear. Seen plenty of positive thinking people pass away. Our reaction does not dictate how everything will go for us and we each must navigate in our own way what works best. No one can or should judge how we go through it or what we can or cannot do in our daily lives.
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I needed to post this and picked this thread because it made me really angry. If you are in a trial, I guess you need to check what happens when it is over and the drug worked.
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Hi Mara and Candy,
I've been lurking on this site since 2014, but haven't checked in for a while. I agree that everyone has a different way of dealing with their own cancer. Since I always feel sick, I wonder if people ever feel "good" about saying NO to anymore treatment. I feel that those not dealing with cancer would judge and think a person has given up. What are your thoughts?
Hugs
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ARC in one short paragraph you pulled out the hammer and whalloped out a big one. Good for you!
Is refusing treatment, saying no, giving up?
I etalked with a friend for almost two years as her pancreatic cancer progressed. She described her life to me. It changed. The things she enjoyed doing and used to be able to do, changed. She made the adjustments she had to, but then those weren't enough. Slowly and with increasing pain her life eroded to the flood waters of advancing cancer. She said she had turned into that thing she had never wanted to be, a walking, yellow, shrivelled bone bag of cancer. She started out around 140 pounds and was under 90 by the time she died. The tumours in her guts were enormous and bulging out, pressing against her skin. She was in constant pain. The pain got worse. She couldn't keep food down. She couldn't keep water down. She began vomiting up the waste that could not make it through her blocked guts and out the other end. She called it sewage puke. SHe made arrangements to have herself euthanized, legal in Canada. The mandatory 10 day wait period from request to day of appointed death was gruelling.
Her husband told me he will never forget her blue eyes and that she WENT OUT ON HER OWN TERMS!!!!! And if my bold lettering option worked I would bold that. I am offended, horrified and pissed right off at the dipshits who think that dying is giving up! We're ALL GOING TO FRICKING DIE! Just how much torture must we endure so that someone else's measure of 'fighting the monster' is satisfied? They're not living with cancer or through cancer. They literally have NO CLUE. And most important they have NO SAY!!
Let me be blunt. By the time someone is puking up their own shit, dying is a mercy to everyone involved. I do NOT ever want my family to have to watch me do that. Why? Because that stays with you the rest of your life. It's a horror that you can't unsee. It's a curse that you place on your loved ones by mindlessly fighting a fight you are never going to win. It is my belief that at some point knowing when to say enough is enough is the ultimate act of humanity and bravery and I ADMIRE those who can do it. Those who say no. Enough. It stops here, it stops now.
I object to obituaries that say 'she lost after a brave battle with cancer'. That's not what my obit is going to say. It will say Runor did what the hell she wanted and when cancer got the better of her, she checked out when she bloody well felt like it. Cancer may have chosen the music, but Runor decided when the dance was over. I will call the shots. I will not give up my autonomy and right to do so. Nothing about dying is giving up!
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ARC, I'm not where you are because I don't always feel sick. But when I do always feel sick, and I guess that depends on how sick, I will say no to treatment. I will not feel good about it. I will feel sad about it. I will feel devastated about it. I will feel angry about it. But I will not feel guilty about it. I will not care AT ALL how others, cancer or no, judge me. And I will not judge myself. That will be my choice and I will make it. I just wish we had the choice that Runor's friend in Canada had.
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“Cancer may have chosen the music, but Runor decided when the dance was over. I will call the shots. I will not give up my autonomy and right to do so.“
So runor, does this mean you won’t be asking the bureaucrats for permission? :
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ARC, I do think a lot of people who have not had cancer or a chronic or serious disease would totally judge UNLESS they were family/friends who knew the patient. It is really hard to understand that a person can be really sick (even if they look very healthy (myself as an example.
This does not make these people bad people, just a lack of understanding and also to tell a person not to give up may be foisting their values on another person.
I will also say that cancer hits us all differently and even within our unfortunate circle, it can sometimes be hard to understand the values and focus of a cancer patient. Staging has a lot to do with, where cancer has spread and whether hormone or HER status as well. Different drugs, different side effects. The way the body metabolizes drugs as well.
I am missing out on a lot of points, but speaking for myself, I do my best NOT to judge other people. I try to make sure if I have judgments that are purely my own, I keep it to myself unless asked. Advice is given only when sought out.
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ARC - Saying no is not giving up. My mother in law decided that she was done. Mets to her brain from lung cancer. I believe that our government/society should support people when they get to the point that they are tired, sick and tired of being sick and tired. Pain free and guilt free. I can only hope that when I need a place to go, I'll find it
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Marijen, I come from a long line of Italians who dealt in the trade of...you know...taking care of problems. So, if you have a problem, you make a call. Problem solved. I have a Luigi and Pietro on speed dial. Money in an envelope. Fuhgetaboutit!
Excellent post Jaycee. Excellent.
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Runor, I almost choked to death with laughter. Just another way to go. Hahaha
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Dark humor, that's how I cope.
I have connections too, but I don't want to pay $$ to have myself bumped off by a "good fella."
We're having a lot of drive by freeway shootings in Santa Clara County over here in CA.
So I'm thinking, "Why don't I just drive down to SC Co with a sign plastered to the passenger side window saying, "PLEASE SHOOT ME IN THE HEAD!!!"
We don't live too far from the Police Dept. I could waltz in there talk menacingly and pretend to pull a gun, and they'd probably shoot me, because they've done that before out here.
If all else fails, there's always VSED (voluntary stopping eating and drinking) and if it's a warm summer, you can sit outside (NOT DRINKING ANYTHING-Least of all water) and you'll probably go in 2-3 days because of dehydration-related organ failure.
Aaahhh...so many choices
).L
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there aren't any easy decisions. One thing is for damn sure each of us should have the right to live our lives and enjoy our life with a certain amount of dignity. And we should also be able to die with a pretense of dignity.. We do not have assisted suicide in Florida but if my cancer ever progressed to the point where I could no longer function and was in excruciating pain which could not be controlled I would find a way to end my life. I would have no guilt associated with that decision.
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So, Lita, if I understand you correctly, you are planning to usher yourself off this mortal coil by becoming a ...raisin? No water? Out in the sun? Oh girlfriend, you will forgive this Italian dark humour but I can't get this out of my head. (it even features a CONTRACT!)
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runor, you are spot on. None of us take the easy way out. Sick of others telling us you have to fight this and do everything we are told to do. Screw that.
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runor- Sick sense of humor. I love it.
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ARC-- Just now reading your post and the others that followed. I am responding because you addressed me, but really I don't know what to say. I am not living in your shoes. I don't know how you feel or what treatments you have endured so far. I feel I am at the beginning of my journey, fight, whatever this is called. I am not any where near making the choice of stopping treatment. But NO stopping treatment is not giving up !!!! It is your choice. Yes a choice, just like "I am going to use this med or this treatment" it is a choice of what to do,or not do,next. No one has the right to judge another.
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Yep, that's the plan, runor, if I can't find someone outside of my family to simply shoot me in the head. Family members would be arrested and imprisoned for homicide, so it would have to be an anonymous drive-by.
There's also the thought of putting antifreeze in one's soda...but from watching 20/20 and 48 Hours crime shows, I hear that's a painfully MISERABLE way to go, and I'm trying to minimize the pain.
L
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Since this is the anger thread may I just say that It would be understandable if someone sent Luigi and Pietro to visit any shamefully neglectful doctor!
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my friend has dementia. We reviewed every way possible to be killed off and not 1 guarantees no survival or painless. They all have a chance even if small. Then you'd be left in worse shape. It's amazing how hard it is to quickly and painlessly to kill the human body. The only think i could think of is anesthesia propofol. That's what mj doc gave too much of that put him in permanent sleep. But good luck getting that.
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Amen. ShetlandPony. What the crap. Shouldn't she be in the hospital or at least have palliative care, etc. to care for her. She is alone to take care of all this. Where the sh** is her doctor? Oh sorry, it is the weekend. Wouldn't want to interrupt his plans to care for a terminal patient. Sh**a** needs to be whooped.
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Where I go there is an Oncologist on call for weekends and holidays
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Rosabella, I’m sure if you call Pietro and tell him you’re a friend of runor’s, he’ll get you all the propofol you need
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Where I live we DON'T have an Oncologist on call on the weekends. But there is always ER and I can always pitch a fit if I need to. (Haven't had to yet, just saying).
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I would too if I had to, but haven’t had to yet either. You can also exagerate a little..
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Just tell the staff in ER you want to talk to the Administrator in charge.
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My dad went to the ER and the doctors were saying they weren’t going to admit him. I called the hospital administrator and threatened to go to the board of directors. They changed their mind pretty quickly and he was admitted. Sometimes you just have to throw the mother of all fits to get them to listen
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In all fairness to ER staff, they are bound by a lot of rules and regulations. If you truly believe you or your loved one needs to be admitted into the hospital, then throwing a hissy fit or speaking to a supervisor is your best option.
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