STEAM ROOM FOR ANGER
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I think we all want to be DNRs.
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Reading a book right now about a woman dying from cancer and the experience of her partner going through it with her, and I am finding it quite horrifying.
It seems that pain management is something that our hospitals really fall down on. I know when my dad was dying of cancer, it was in his spine, and was in such agony, I should have been screaming and ranting and alerting the media that they WERE NOT controlling his pain. Very quickly morphine becomes no effing good and causes hallucinations. I should have been hollering for heroin. Not only was it a tragedy that my dad had to die that way but it was a sadistic infliction of lasting horror on us, by the medical machine, that we had to stand by, useless, helpless, and let dad get sucked into 'the machine' where their process and plans are their concern NOT what's best for the patient. This was all brought back to me when after a lumpectomy gone wrong and traumatic bleeding in the site and ripping of stitches, I was plunked in a hospital bed overnight with nothing for pain but plain old Tylenol. I was almost puking from the pain. It was criminal negligence if you ask me. The surgeon seemed unconcerned and even when I ended up back in the emergency room 2 days later for pain that I could not handle, I was sent home with nothing. NOTHING for pain.
I have said here before that I want to hire a hit man and tell him when he sees me creaking around the yard, bent and breathless, wincing in pain, put a bullet in my head. I don't want to see him or know when it's coming. But visions of my own death and what it will look like and what my family might be left with .... hire the sharp shooter, pay him in advance, give him a timeline and guidelines for when and, no worries. Let's face it. Having cancer is exactly like having a big target painted on you. You can go quick, you can go slow, but either way, this is going to end with death. I choose quick and merciful as opposed to long and gruelling. I'm pretty sure I have a few hired guns on speed dial, now where did I leave my cell....?
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Runor...I'm so sorry you had to go thru that!! I can't believe all they gave you was Tylenol. That's SO WRONG!!! And, I'm so sorry about your dad...(((Hugs))
I have mixed feelings about death. On the one hand - I'm terrified of it. And, sad to be leaving people who care about me.
On the other, I probably won't have to worry about retirement!! I was worried before...now I feel like I'd just be lucky to even make it to 60
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i have a DNR on file already.
What really effing pisses me off is that we're allowed to put our pets down mercifully when they're suffering in the last days, but NOT our human family members.
Yes, we have "end of life option" states, like California, but what if you can no longer swallow the damn pills, or worse yet, you take them but puke them back up? Why can't you just give yourself a shot?
Ive heard that in Europe they will help you, but not over here in the usa.
The ultra conservative right thinks we should all suffer, Catholic church, too. They have strong lobbies.
In a hundred years, decent assisted suicide will be a sacrament, not a crime.
L
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I agree Lita...
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It will, Lita. The aged of other eras often just jumped the cliff or went out into the meadow with a blanket and stayed until they died or a wolf pack found them being more likely. I like the blanket plan but it will have to be freezing and fatal quickly. But I prefer the European plan that can be had. The movie "Me Before You" comes to mind.
Runor - the idea of a hitman is interesting too.
You father dying in such pain is criminal. Why can't everyone have the same care that is effective and humane? But some of us end up in a hospice with palliative care that is not working. And some end up suffering in a hospital bed with no end in sight.
I don't have my DNR or my wills done yet. This brings it home.
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Scared67, I hear you about wondering about milestone birthdays. Suddenly I wonder if I will live to see 60. This is a thought that never used to enter my head. Now? These grim thoughts haunt me. Shadow me. Murmur in my ear.
Canada is moving towards assisted dying. We do not have the kinks worked out. But at least it's in the works. There is a very good TedTalk (I think) about the damage that religious lobby groups are doing to legislation that helps people with end-of-life suffering. We think that religious terrorists strap bombs to their chests and blow up tourists. Yes. But religious terrorists, in their righteous zeal also lobby governments to ram their way down the throats of their fellow countrymen. Religious terrorism is attached to every single religion, sometimes it wears a bomb vest and sometimes a business suit and law degree. But when I can't end MY life because of YOUR beliefs, you are a terrorist, not anyone's saviour.
I think my hit man idea has merit too! Whether I can legally hire some doctor to come and inject me or some sharp shooter with a gun to pop the top of my head off, the end result is the same. Why should one be allowed and not the other? As long as no one else is harmed - I mean, obviously you have to hire GOOD hit men and not those part time hacks who don't know what they're doing. I'm sure there is something on the Yellowpages to help sort this out.
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My husband's grandma called her doctor one day and just said she was alone and tired. Asked what would happen if she stopped her meds. He told she'd be dead in 48 hours. She asked for something to not make her hurt and he prescribed strong pain meds. She was dead in 48 hours. Took nothing but pain meds. Everyone gathered and no one thought to call us until about 3 hours before she died since we lived 6 hours away. He never got to say good by. Sucks but it was her choice to die that way.
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The thought of weeks or months in agony is too horrible for me. Please God, wishing for an easier exit.
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Runor - LMAO - you say "I mean, obviously you have to hire GOOD hit men and not those part time hacks who don't know what they're doing. I'm sure there is something on the Yellowpages to help sort this out." I literally see this hack hit man f'ing it up, too literal. This is a morbid and depressing topic that must be said though. Sometimes the factors of what is ahead swirl in my mind for days here and there. No one to talk to.
The first I ever heard of a person choosing to end their life was Scott Nearing, a famous organic gardener from VT who ended his long life when he chose by using starvation.
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This extremely young girl in California Chose to end her own life, she was terminally ill with severe type Of brain cancer. she had to petition the courts for permission she was young and so pretty. She was only 25 years old or even younger I cant exactly remember. But the right to die states are there, but there is a lot of red tape to go through to be granted. I think Shetland pony actually started a thread about getting hit by a bus. And how people always use that commentary.
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Her name was Brittany Maynard. She was 29. She didn't have to petition the courts. Petitioning the courts would do you no good in a non right to die state. She and her family had to MOVE. She was in CA before the right to die law there passed. She moved to Oregon to take advantage of their law. Her story helped push the law forward in CA.
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What sucks here in CA is you have to PAY $5,000 for the damn pills tho.
There has to be a better way. The VT organic gardener chose something like VSED...voluntary stoppin of eating and drinking.
That's what I plan to do.
L
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I'd pay the $5000 if I thought I could get the stuff down in the allotted time. It is not unlimited. I have issues with swallowing now.
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I am NOT brave. I am NOT strong. And I am NOT just grateful that it wasn’t as bad as it could have been.
What I am is tired. Tired of putting on a brave face so I don’t have to explain how scared I am. Tired of feeling like an 8 year old with an early bedtime who never gets to just watch some pointless tv at the end of the day. Tired of being told how good I look. Tired of trying to be happy it’s “just” breast cancer.
For cryin out loud, does it matter? I’m scared. Scared that this wasn’t the ONLY place it is. I mean, the first biopsy came back clear. CLEAR. But the lumpectomy came back Cancer. What if that wasn’t the only place? Ahhhhhhh!!!!!!!!!!
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Make sure you have you DNR on file at any hospital you could end up at. My 90 year old mom broke her hip and was at a rehab place when she had a stroke in the middle of the night. They took her to a hospital by ambulance. Guess what did NOT go with her. Her DNR. She was intubated, something she never wanted to happen. My sister had to go to the hospital in the morning with her DNR and get them to take out the breathing tube and watch her die. The cowardly daughter (me) sat in a state miles away and heard about it by phone/email. My mom got what she wanted in the end. We found her heart medication hidden under furniture when we cleaned out her apartment. I say "we." My sister did that, too.
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25+ years ago, my father died of colon cancer when he was 61. He died at home and we had to watch and try to comfort him. The doctor (Kaiser) sent him home with minimal pain meds (not even morphine). He was in agony. We had to ask for and (finally) got liquid morphine. But he died before we could give it to him. He was actually lucky -- he died within 4 days of being home so he didn't suffer for too long.
When I got my BC dx, my biggest fear was dying like my father. But I think doctors are better at pain management now. And California's new 'right to die' law actually gives me comfort. But the San Francisco Chronicle recently did a story about how some doctors/hospitals are not 'on board' with this new law. So if my cancer progresses, I'm going to make sure my MO is 'on board'. And if she isn't, I'm finding a MO who is.
Here is the link to the Chronicle story: SF Chroncile
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My dad was home and on morphine at the end. He would talk in his sleep or whatever state he was in. He talked about his whole life for days. He talked about friends and family who were long gone. He would ask where I was or my brothers Even my mother, they had been divorced for over 24 years. Once he woke up and asked me if he was dead yet. Broke my heart. He was afraid.
Twice in the past year they told me to get my affairs in order because they didn't know how much time I had. Sounds crazy but I wasn't afraid but had the worst feeling of sadness I have ever experienced. I thought of my youngest son who was 17 and my dear husband all alone. It made me feel guilty. I wasn't in any pain yet so not sure how I would have felt if I had been in a lot of pain. I just pray to God to not have my death linger. I do have a stockpile of meds if I decide to chose that route but my faith in God is strong and I would take comfort in knowing I was going home to a place with no more suffering and sickness.
Everyone is different and has their own beliefs and I am trying hard not to focus on the end but sometimes it just happens.
We went to a Clint Blackconcert last night and the place was packed. I looked around at all the people and said yup, everyone of them is going to die too. Weird how the mind works.
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I would also like to say STOP asking me what I need. I don’t know! I’ve been a strong, independent, single woman all my life. I don’t know how to ask for help. I don’t know what I need that anyone can give me or do for me. I KNOW people are trying to be kind but I DON’T KNOW!!!
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well sudden bilateral BC DX after 10 plus mammos happened. I had to let my other people beat my body for 10 straight mos. I wish I got paid for it at least. Now I have to get total hystrectomy in 15 hrs. Again I have to let someone beat my body.
This better be the last time. I refuse to be beaten.
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I am all for letting (inviting) someone who looks super busy to go in front of me in line at the grocery store when I have a lot of items and they just have one or two...but today I was TIRED. Done shopping, running our son around, had the groceries ready to go and was waiting in the front office to get a new member card because I lost mine. Some guy who wanted to buy lottery tickets had the nerve to ASK me, tired woman with a cart load, if I mind if he went a head of me. Yes I mind - I replied. THAT felt GOOD! (Like your time is more important than mine? Not today idiot). Hey man, it's the little things....
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A favorite thing to say on my MS forum to make ourselves feel better is: "at least we don't have cancer." I guess the we pronoun doesn't apply anymore.
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I'd like to ask a question, which I hope doesn't upset anybody. I've been wanting to start a thread about near death experiences. I have had one, and it really helped me normalize the idea of death (was not religious). Anyway, I wonder if such a thread would be helpful. If people think it's too sensitive a subject I'll just delete this post and forget about it.
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I was interested in states "As of February 20, 2017, California, Colorado, District of Columbia, Oregon, Vermont, and Washington have Death with Dignity statutes. In Montana, physician-assisted dying is legal by State Supreme Court ruling." and countries "In April 2002, the Netherlands became the first country to legalise euthanasia and assisted suicide. It imposed a strict set of conditions: the patient must be suffering unbearable pain, their illness must be incurable, and the demand must be made in "full consciousness" by the patient. In 2010, 3,136 people were given a lethal cocktail under medical supervision." ..... "France.... In 2005 the Léonetti law introduced the concept of the right to be "left to die". Under strict conditions it allowed doctors to decide to "limit or stop any treatment that is not useful, is disproportionate or has no other object than to artificially prolong life" and to use pain-killing drugs that might "as a side effect, shorten life"." ......... "In Germany and Switzerland, active assisted suicide – ie a doctor prescribing and handing over a lethal drug – is illegal. But German and Swiss law does allow assisted suicide within certain circumstances. In Germany, assisted suicide is legal as long as the lethal drug is taken without any help, such as someone guiding or supporting the patient's hand. In Switzerland, the law is more relaxed: it allows assisted suicide as long as there are no "self-seeking motives" involved. Switzerland has tolerated the creation of organisations such as Dignitas and Exit, which provide assisted dying services for a fee." ...... "Belgium passed a law in 2002 legalising euthanasia, becoming the second country in the world to do so. The law says doctors can help patients to end their lives when they freely express a wish to die because they are suffering intractable and unbearable pain. Patients can also receive euthanasia if they have clearly stated it before entering a coma or similar vegetative state. Assisted suicide is not mentioned in the law, which does not specify a method of euthanasia. As Jacqueline Herremans, president of the Association for the Right to Die with Dignity, says: "We don't make a distinction in the semantics." However, the physician has to be present at the bedside of the patient to their last breath, unlike the Oregon model where the doctor gives only the prescription of drugs." ..... from https://www.theguardian.com/society/2014/jul/17/eu...
TaRenee - Since you are early stage I think the oncologists do not run the PET CT scans as often, I don't really know. But I think that would help you to feel more comfortable with your treatment. They use the labs and tumour markers which can be misleading to a deadly fault when trusted. And just figure that your breast cancer type will respond to the treatment yu are given since they are supposed to match. I would ask for a PET CT.
Castigame - It is harsh isn't it? Though the treatments are for our life sake and hopefully will help us to live longer. You need a hug. Going through major surgery is not easy especially when we don't feel well at all.
Janet - I don't see you as cowardly by not being there, you were in another state. Sometimes we just can't go. I carried the heavy load when my mom and stepdad were both in ICU at the same time. She went in dying of cancer / emphysema. Two days later he went in from a heart attack. I stood against the wall in hall between their rooms and told the nurse I felt like a Mack truck just hit me and I needed a room too. I closed my historical journal, took over all the care when Dad came home. Mom never got out of the hospital. My sister was fulltime college and newly divorced w a little one. My brother had fulltime sales and his family and lived 1/2 hr away and worked in town hospital was in. So they were on hands too. But I did most of it. Took me over a year to get over it. I had given Mom the best of me at the end and the worst of me. Felt I never really was "there" for her, always doctors, nurses, issues, and my own little world to deal with as I had a family too. And I played for her my favourite natural music and so after that I was not able to listen to that music for a few years without the tremendous sadness. So I sort of fall into the role of your sister. But also you. Especially with my Dad, I was not there but that is a very long and horrible story and mostly of his own making. I guess we never feel like we are enough when it all hits the fan. Go easy on yourself too. Hugs from me.
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I am sick and f'ing tired of being strong. No, I don't feel it, physically or emotionally. Sick and freaking tired of cancer being my every other thought. Sick and freaking tired of the physical pain that never goes away. Sick and freaking tired of all of the pills. Sick of realizing that I really don't have to worry about saving for retirement because the chances of me living that long are slim. I'm just sick and freaking tired.. of everything. Anyone feeling me tonight?
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I know that I am not strong. And, it bugs me when people say that. Or that I'm a "hero". No, I did not rescue a kitten for a tree or save someone in a fire. I am NOT a hero. Just someone doing what any person would do to try not to die.
I am, actually, an idiot. And, am pretty steamed at myself.
I didn't realize breast cancer ran - in my Dad's side of the family. And, stupid me, went 5 years without having a mammogram. Stupid me, thought what I had was a cyst, because I've always had breast cysts.
So, I finally get around to have my mammogram and end up being told (after the bilateral masectomies) it's "multicentric, multifocal, over 6 centimeters, Grade 3" and in 3 lymph nodes - one of which was bursting full of cancer.
I have a college degree, but because of my anxiety about goimg to the doctor and believing BC didn't run in my family -- I screwed up my body. And, will most likely never see my daughter's children.
I had a beautiful, healthy body and it's gone. I will never forgive myself....
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Scared67, I understand that you are mad at yourself. I have a different story (which you can read in previous posts), however I blamed myself so much that I lost 40 lbs through depression and anxiety. You must forgive yourself because you need to get past the regrets to be able to move on. And because it does absolutely no good to waste time on the what ifs. Take that energy and exercise, plan healthy meals, and enjoy life. If you don't, if you do recur, you will be saying I wish I hadn't spent so much time kicking myself. Sorry, your post really struck a chord with me because I have been where you are and once I finally forgave myself for not being more proactive, I could start focusing on staying healthy. Unfortunately, I also gained back the 40 lbs. Ugh!0
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Thank-you Perigrinelady....I was beginning to feel like the only one. It's hard...especially with all the "early detection is key" being said so much. It is key and I choose to ignore it.
Anyway...enough self-bashing. You are right!!!
I do exercise very hard because it's like therapy for me.
But, need to eat better. BTW...I never had a weight problem before - but - somehow managed to gain 25 pounds!!!
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Yes, that first year, I walked or hiked almost every day and that is the only time I felt really healthy. I am glad that you are exercising since it is the best way to prevent recurrence. In a way, I think I try harder to make up for past complacency. Best wishes to you!
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Scared67, you are not alone in putting off mammograms. I had gone 7 years since my last mammorgram when chronic pain in my breast made me finally go get one, because something was hurting. I almost didn't go. I could not feel a lump. Just a vague, continuous ache. So I went. Then when the tests came back saying it was a radial scar and I read that most radial scars are not cancer I almost wasn't going to have a biopsy. It seemed like a lot of sedation and cutting and stitching for nothing. But...fine...take a chunk of the damn thing if it will make everyone happy, seems kind of pointless since 99% of radial scars are just normal tissue. Oh, wait, I lose! My radial scar is that stupidly small percent that turns out to be cancer.
I can honestly say that I do not blame myself for getting cancer. I didn't choose it anymore than I chose this nose I was born with. I didn't get cancer because I missed a mammogram. Mamms or not, if it was in the stars for that cancer to show up, it would have shown up no matter what I did. Cancer is not a fault. Cancer cannot be prevented with mammograms. Cancer is a no blame situation. It just is super shitty, super terrifying, super bewildering and disorienting, super isolating and life changing. Even if your life LOOKS the same it will never FEEL that same. I do everything I used to do only now I do it under a weight of fear and a crushing sadness that makes my heart hurt.
It is totally valid to be mad over breast cancer. But it is not right to be mad at your self. Your self is not at fault. Your self does not decide the trajectory of your cells. And you could have mammogrammed your self every 6 months and that cancer still would have shown up. I know you feel that if you had 'caught it early' the outcome might be better. But would it? I read too many stats on this site that have shown me otherwise. This disease is like a wildfire, it goes where it wants and what it does make no sense and seems to follow no rules. Too much false hope is pinned on early detection, if you ask me. Don't waste your time with blame. There are so many other miserable feelings to focus on. (ugh!)
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