A place to talk death and dying issues
Comments
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I have noticed that some beliefs are sanctioned on the boards and opposite beliefs are banned or discouraged. There are many paths up the mountain to enlightenment/ heaven what ever you will name it. People are also the product of their experiences. You can not ever separate dying and death from people's beliefs; won't happen in any religion. So unless we just sanitize our dying talk to cover cremation, urns, legal affairs and talking to loved ones, the really interesting "soulful" approaches to dying won't get shared, or why people have chosen the paths they have.
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Hi, not to throw gasoline on the fire, but I think we have to be able to express our beliefs of any kind here. We're all preparing for our demise in a way that most can never understand. There's no one else like you in my life. You mean so much to me, and it's so comforting to know that I can say what's on my mind and not have to worry about being told "don't".
I'm in a 12-step program for nicotine addicts. Crosstalk is discouraged which means if someone says something I disagree with, I'm not supposed to say, "I disagree with what so-and-so just said." It can be hard sometimes, but it keeps the cohesion of the group together, shows respect for each person's opinion, and minimizes the development of resentments.
There's the old adage, of course, that one shouldn't discuss politics or religion at, say, a cocktail party. Anybody seen the bartender????? Make mine a double!!!
xoxoxoxo
Calico
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Well Ladies, we are Stage IV, and there ain't no 5! I'm going to go how I choose, believe what I want to believe, and have dessert first! I will have a drink, have homemade ice cream with hot fudge for lunch, and fight every battle like a butt kicking ninja. And when I am done, I will lick the hot fudge off the spoon, drink my milk right from the carton, and know I did my best to win this crappy war against BC.
At Stage IV, I believe that it is all about Quality of Life! And we have the right to choose just what that may mean to us. Game On, I plan on leaving it all on the table, no regrets, no apologies, no excuses. But most of all NO judgments.
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Rosevalley, I'm disappointed that you deleted your post, which I'd read before you deleted it. Why write such heartfelt feelings only to delete them because of one person's comment? I think your post was valid and others may have drawn something useful from it. I don't have a problem with discussion of spiritual things on this thread, whether they are Christian, Jewish, Buddist, Agnositic, Atheist and everything in between.
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I read the other day of this young man that moved his whole family wife of three years with a terminal illness, in-laws to Oregon ? because it has a die with dignity law. The doctor can't administer the medication ,you have to self administer it. I think of sometimes just going into the woods when it's time for me to die to save my family the agony of watching my last hrs. I've seen people die in their last hrs. and it's not pretty. I pray that I go in my sleep, but there's no guarantee of that happening. My oncologist would never put a time stamp on my life, my fear is ending up in the emergency room and have a dr. come to me and tell me I have so much time until the end. I don't want to know how much time I have left ! I know that it's going to happen ! I sent for my 5 wishes paperwork ,even though I've expressed to my dh and dc what I want. They don't believe that I'm going to die because as of now, I'm like the ever ready bunny. They don't have a clue of the effort it takes for me to keep going, psychologically ,mentally or physically. Last month I donated so much stuff to a mission. I don't want my dh to have to decide what to do with all of this stuff. I still have so much more to give away arrg! I decided yesterday to treat myself to a new out fit,because I'm not dead yet !
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Hi mscal02, I hope you love the new outfit! When I was scheduled to start chemo last August I went and bought a very nice pair of sandals to walk the beach this summer. They are waiting in my closet for the snow to melt. So I was planning for a big summer this year, and I hope to hear good news before the Spring thaw. I have a lot to do yet. It is so hard to keep going to the appointments and not hearing anything much in the good department, so I make my own fun. With that thought, I am going to buy a new winter coat, and keep it for next winter when the weather turns cold and the beach is frozen. I wonder how many seasons I have??
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I thought and believe that this site was for all of us ...No matter what we believe or how we believe to be able to discuss anything...I know that I desperately need this site ....I DON'T WANT TO DIE...AND AM SCARED TO DEATH TO DIE...AND KNOWING THAT I WON'T BE WITH MY FAMILY AND MY NEWLY GRANDBOYS...TO SEE THEM BECOME MEN...I may live that long...BUT DAMN IT... please don't stop someone voicing there voice for them to deal with how they see death or what to perceive death and how they want to die...I count on you beautiful woman to help me and guide me into the direction I am not OK seeing yet....Remember some of us may not die from this disease...we might die from something else in life...get in a car accident etc...BUT PLEASE I BEG YOU ALL (SISTERS)...LET'S DO THIS...TOGETHER...THE WORLD IS ALL READY A MESS UP PLACE......I think we should all stop judging and let us just be in peace ...PLEASE....I love everyone and everything...in life...I was raised not to be judgmental and prejudice...and I did that with my grown kids..
So please keep writing and voicing ...to help me and to help others to come FACE TO FACE of there fears and insecurities of joining the other side with God...or who every they think they are going to heaven to be with...I NEED YOU ALL!!!!
LOVE AND RESPECT
CARLA
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Beachbum: I'm going to tell you what my dr. told me ,live your life !!! If we knew the exact date our end was coming, I'm sure we would go out and do things we've wanted to do all our adult lives !! I try not to think about it too much and just take one day at a time ! Put those sandals on even if you have to wear them with socks. I don't save anything new that I buy for myself. I read about this man that had so many brand new clothes and shoes when he died, his wife was just overwhelmed looking at all the new stuff he left behind. I tell my dh, .tomorrow is not promised. I think sometimes that I could be walking and a freak accident might happen, like a tree falling on me, or driving under an over pass and it crashes and kills me.0 -
freebird: You are correct. We should have compassion for each other on this site. If we haven't converted anyone to come over to our way of thinking, it's too late now. Let's just love one another ! We're all traveling on the same highway,no matter what our beliefs and preferances are !
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We hope you all continue to freely discuss philosophically, spiritually and practically the feelings and thoughts on death, dying and living. We encourage open conversations on all aspects, and hope for mutual respect in differing approaches. With hugs, Your Mods
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mscal02, I get it. For motivation I traded my car for a new 2014 Cruze when I was diagnosed with Stage IV. I had 72 payments when I drove it off the lot, my goal is to make every damn payment! I made 5 payments so far.......
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I'm thinking of doing the same thing ! you've just propelled me !!
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mscal02, you go girl! Game On!
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Thank You..
I have 10 more payments on a SUV that I bought a yr prior to my dx...I refused to let that go...I had to sell my Harley that I...which I have had a few in my life for about 20 yrs...to down size to my 5th wheel that I live in now...just to make my financial situation more manageable....
I have just reach out to going back to church for the first time in 15 yrs...and joined a prayer group for support with folks going through illnesses...through the church..and I have met some incredible people...teaching me a lot...about let go let god....Amazing!! I really need to be taught at this time in my disease...L&R Carla
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I have been reading through this thread but have never posted until now. I believe the emotional side of this disease is so much harder than the physical side. People say, don't worry, we are all going to die. I agree but I think after being diagnosed the end seemsto be closer than I had planned on. I am right there with you Freebird, I get overwhelmed with the thought that I won't be here with my family. My 2 oldest kids haven't even gotten married yet. God knows how bad I would like to at least see a grandchild. To make matters more complicated I have a child with Down syndrome, she is the love of my life. She stays with me all the time, she will be devastated when I am gone. Then I have my husband, we met when I was 14, and have been together every since. I can't imagine how him and my daughter will do without me. It makes me so sad to think about it. I know I should be thankful, I have been so fortunate in so many ways, but selfishly, I want more.
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you said it kandy! Yes, I selfishly want more also!
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Just reading back the last couple of pages. Bon, that you so very much for all that time that you took to put all that wonderful information together! Almost too much to digest at one time, would it be okay for me to C&P (as written with credit to you of course) and share with my Dad? We're going through so much of that now with Mom, it's been so stressful for Dad and would love to share the info. Whether we want to deal with it or not right now, those issues will not just disappear.
Calico Cat, thank you for the kind words of support. Means a lot. Just saw Mom a few minutes ago, so difficult to see her knowing she's in so much pain. It just doesn't seem fair to watch a person suffer so much and I turned to this thread for comfort.
I, too, was very disappointed that Rosevalley deleted her posts. She gave me so much food for thought, expressed so lovingly and eloquently. Even though I'm not Stage IV, her posts currently relate to those around me. I appreciate how she kindly shared her deepfeelings with this thread. I'm sure there are a lot of others lurking and reading what you all have to share (I didn't know how I would be received so I was hesitate to comment, some other threads don't welcome comments from those who are not Stage IV and I didn't want to offend anyone. Grateful this wasn't the case here). One thing I know for sure, I will sometime be facing my own death (and deaths of parents) and God-willing I will be around to need that information and insight one day.
Again, thank you all for sharing on what is probably one of the difficult topics to face us all.
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I just read an interesting article in Medscape. Link to Medscape article I was appalled anyone would write such a thing. Prepare to be a bit shaken. OK? Just to let you know what it is about so that you can choose not to read it: This guy asserts that cancer is the best way to die.
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Cancer Is the Best Way to Die, Says Former BMJ Editor
Zosia Chustecka
January 02, 2015Drug & Reference InformationIn a reflection on the many different ways we can die, including sudden death, the slow decline with dementia, and stepwise organ failure, the former editor of the BMJ, Richard Smith, MD, concludes that "death from cancer is the best."
In what he admits is a "romantic view of dying," he says that when cancer is the cause of death, "You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favorite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion."
"This is...achievable with love, morphine, and whisky," Dr Smith writes.
"But stay away from overambitious oncologists," he adds, presumably to avoid overtreatment and also what he describes as a death that is "kept at bay by the miracles of modern medicine," quoting the Spanish film maker Luis Buñuel.
In fact, Dr Smith goes even further and suggests, "let's stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death."
The comments appear in a blog post published online December 31 in the BMJ and have provoked an onslaught of comments in response, mainly from relatives of individuals who have died from cancer, who say the death was slow and horrible, and also from cancer patients who are very grateful that research into cancer is keeping them alive.
"This blog is wrong on so many levels. This doctor has clearly not lived with someone suffering from pancreatic cancer," writes the widow of a patient who died from the disease.
"My husband was diagnosed at age 48 after being healthy all his life. He was in severe pain, especially when lying down, so he could not sleep and had to just pace about corridors or outdoors." She provides quite a bit of detail on his treatment, which allowed him to survive 27 months after diagnosis, and comments that the "treatments did give him time pain free and a chance to live life outside work." But she says she remains traumatized by the actual death, watching while he "starved."
Another commentator argues that "Dr Smith's argument is very poorly presented and poorly written. He seems to be trying to make the case that extensive medical intervention is cruel, but in choosing cancer as 'the best' death, he actually chooses the one type of death (of those he mentions) that requires the most extensive and invasive treatments ― contradicting his whole argument."
"Perhaps worst of all he posits that we should do away with all cancer research without a single shred of evidence," the commentator writes. "What of the tremendous strides made in treating childhood leukemia or breast cancer? He mentions none of that, and he makes sweeping generalizations about oncologists as well, saying stay away from the 'over-zealous' ones, and not mentioning the good that so many of them do."
Another commentator agrees, adding: "With that attitude we might as well cancel all medical research as 'your number is up when it's up.' I don't mind your (completely baseless) belief in fate but don't involve others in your crazy religion."
Most of the comments are in a similar vein, registering shock and disgust over the 'insenistive' opinions that Dr Smith expressed. But there are a couple of commentators who offer some agreement with his views.
"Perhaps cancer is the most humane way of dying in these modern times," writes one commentator, who also contemplates drowning, burning to death, and being kidnapped and tortured to death. In contrast, she imagines that death from cancer would involve getting "the best care in a hospice, you get to have your family with you, you get the best drugs and painkillers to ease the way. You get to say goodbye. That's good enough for me."
Better Than Sudden Death and Dementia?
In his blog post, Dr Smith writes that he thinks a lot about dying and that he has talked to people about how they would like to die. (He worked in television for 6 years and was a TV doctor for both the BBC and TV-AM.)
"There are, as I endlessly repeat, essentially four ways to die: sudden death; the long, slow death of dementia; the up and down death of organ failure, where it's hard to identify the final going down, tempting doctors to go on treating too long; and death from cancer, where you may bang along for a long time but go down usually in weeks," he writes. "Suicide, assisted or otherwise, is a fifth, but I'm leaving that on one side for now."
Most people say they would like a sudden death, Dr Smith writes, but he points out that this is terribly hard for those who are left behind, and especially if there are relationships that are strained at the time of death.
"The long, slow death from dementia may be the most awful as you are slowly erased," he comments.
"Death from organ failure — respiratory, cardiac, or kidney — will have you far too much in hospital and in the hands of doctors," he writes. Dr Smith recalls the horror he felt as he watched, as a medical student, news bulletins about Franco's death in 1975, when one organ after another failed and doctors tried to compensate. That is the "most horrible medical death," he says.
So, out of the scenarios that he describes, he concludes that "death from cancer is the best."
But he asks, "will I be ready?" And in closing, he adds as a competing interest that he will die, and "perhaps soon," because he is 62 years old.
Dr Smith was the editor of the BMJ until 2004. He is now chair of the board of trustees of icddr,b (formerly the International Centre for Diarrhoeal Disease Research, Bangladesh) and chair of the board of Patients Know Best. He is also a trustee of C3 Collaborating for Health.
BMJ blog post. Published online December 31, 2014. Full Text - opens in new tab
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Hi, Dunesleeper, I saw the rebuttal to Dr. Richard Smith's blog post on Medscape. It is posted below along with the comment I wrote.
Cancer Death the Best? David Kerr Begs to Differ
I'm David Kerr, professor of cancer medicine at the University of Oxford. I would like to comment about a blog[1] that was posted recently by my friend Richard Smith, a former editor of the British Medical Journal.
Richard is a clever, provocative contrarian and we must assume that an element of his article is somewhat tongue-in-cheek. In the article, he explores the four best modes of death and concludes (and it is a personal statement) that cancer is the best way to die.
He has had a long career as an editor of some note and has had a variety of different roles in the media (including as a TV doctor), so he has had many chances to put himself in front of audiences of lay people and patients with all different types of diseases, and he has concluded that cancer is the best way to die.
Why? Romantically, he thinks it is because it gives you time to get things in order. It allows you to read last books, write last poems, revisit and perhaps rekindle old loves, and somehow get your affairs in order because the tempo of the disease, the tempo of death, is relatively slow. It gives you a chance to order that final bit of life.
He contrasts this with sudden death, which may be ideal for the dear departed. But for those who are left behind, it is difficult. In these views, I sort of understand what he is getting at. I had just started medical school when my mother died sitting at my shoulder. Her head just gently tipped forward, came to rest on my left shoulder, and she had gone. So much unsaid, so much mystery, so much more yet to know, but she had gone. Some years later, my father died of cancer—nasty, pancreatic cancer—over a period of weeks. We did have enough time then, with my brother. We talked things through. We got to know more about my father in those last few months than we did in all of our boyhood lives with him.
So I see what Richard is getting at, but he ends his article on a daft, mad note in which he says, "Beware, overzealous oncologists" (this is me he is talking about), and (using his words), "We should stop wasting the billions of dollars that are spent on cancer research trying to overcome this disease." This is just plain nutty. It is crazy and I can't imagine for a moment that in his heart of hearts he really means that.
This has offended and upset hordes of people, and he is wrong. We are here to seek, to strive, to overcome, to use knowledge, and to see what we can do to conquer cancer, and that is not going to stop. It is not, Richard, and you know that.
In terms of final modes of death, I would select a quick and sudden death, of course—to go to sleep for a moment, to nod off, to pass from one room to another (whatever one's belief or credo). That seems a cleaner, quicker, better mode of death. It's harder for those left behind, but preferable, by far, for the individual.
In terms of Richard's final comment about abandoning all hope and cancer research, that is daft. You know it is, and we are not going to stop. We are not going to be overzealous; of course, some of us are. We have talked many times before about how we can better cancer care by understanding that we can overachieve, that we can go too far. But perhaps the best sign of a mature oncologist is knowing when not to treat, when to stop treatment, when to say, "We still care for you but we will use palliative medicines rather than the harder cytotoxic drugs." I understand all that, but we are not going to stop, Richard.
Thanks for listening. I would be very interested in your comments on this.
My Comment:
I've been in treatment for breast cancer since 2006, and the cancer has been Stage IV since 2010.
I started to see the benefits of dying a relatively early death from cancer some years ago. My mother is 95 years old and living in a nursing home, having had dementia for 10 years. She lost her eyesight to macular degeneration, and has had chronic back pain since her 70's. Thanks to cancer, I will likely leave the planet before I develop those maladies. I consider that a great blessing.
But are benefits like that worth the stress of seeing one's death coming in a very concrete way for 9 years, contemplating when the words, "There's nothing else we can do", will come? It's been pure torture.
So, for me, this condition is, at best, a mixed bag. When the chemotherapy side effects get too debilitating, I want to stop treatment, knowing that by doing so, I'm pushing up the end of this journey. When I hear those words that nightmares are made of, though, it won't be the worst day of my life. The worst days have been waiting for PET scan and biopsy results.
When I balance all these things out, I have to conclude there is no best way to die. They each have their good and bad points. But I do appreciate Richard Smith's extraordinary attempt to make lemonade out of these lemons.
xoxoxoxoxo
Calico
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Well said Calico. I am not sure this is the best way, but I am pretty sure it will be my only way...........perhaps it is up to us to make it the best!
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Calico, thank you for posting your comments. You so eloquently expressed the thoughts and feelings that many of us share!
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Wow amazing that this fellow blogged what he did. I am sure he meant to stir the pot and throw a rock at the hornet's nest! He accomplished what he wanted. Funny. Having watched folks die of cancer on the floors and in my family, I hardly believe it's the "best way to die." I guess it depends on what your criteria is.. Personally, I would rather die in my sleep or have a massive MI and hit the deck. Calico nicely posted how most of us feel. It's hard to explain to someone not "feeling" the effects of all these drugs and what endless years of treatment does to a person, their marriage, friendships and beliefs.
I mean I wish I had a 5$ for every time some PA, NP or MD looks brightly in my face and announces "you look good!" I look good when I have broken ribs, wide spread mets, a hemoglobin of 5 and haven't slept but 4 hours... I could put my kid through college with all the "you look good!" comments I get tossed my way. I resent to the marrow of my being the platitude- "you look good!" As all of us well know and live - you rarely feel good on this stage 4 journey. Yep, you have another day, a precious 24 hours, but you ache, you are tired and might have bowel, bladder issues, NV, mouth sores... the list is endless. You get on one drug and endure a whole new set of side effects... that drug craps out and on to yet another with another new and exciting list of side effects! What fun! You endure this for YEARS! It's like having a low level flu at times that never lets up. Few people really "get this." After all, we are upright and in the market getting groceries like everyone else.
Then there are the socially awkward moments of so "are you cured and or in remission?" The family and folks who refuse to acknowledge stage 4 and dance stupidly around the obvious... bring up stories and things they read "for your benefit!" Hail asperagus! Here's a recipe to cure everything. The endless emails with "did you see this?" The sad truth that you and your spouse don't talk about retirement. Intimacy is NEVER the same... and if it is for some of you - wonderful for the exceptions!!! Having cancer, stage 4 is like a slow death for so many things. Your kids have anxiety where none was before. Their innocence is shattered and the "reality" of death cemented into their hearts and brains long before most kids even notice death exists. Friendships wax and wane depending on the "friend's" ability to ride the waves of years of treatment. Some folks vanish, some reappear... on and on. Your belief system gets tested, broken- patched and repaired, ditched and or replaced. Being a cancer patient is a philosophical and psychological roller coaster ride. Not a fun or amusing ride either- in my opinion. You ride the waves as they come at you.
But hey... ya'll know this right? Preaching to the choir. That is why we come here to this site. Thank you by the way!
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Rosevalley we all feel the emotions of this crazy sucko disease. We smile for all the well meaning friends, and read or delete the have you seen this email. We all hope for the next big thing, but we are all tired, and sick and tired of being tired. I'm feeling tired going thru rads after coming in to rads right off of chemo and surgery. I was tired then, and the feeling is now beyond tired. I feel like I try to second guess the treatment, the should I do it or skip it. I want to walk the beach this summer, swim and raft, and have those warm summer nights to enjoy our so short summer here on the Lake. But who knows if I can make that happen. I will finish rads, then what?? The MO wants more chemo, and I just think been there done that, and I feel like crap. My brain never stops from all of the info I can't organize. But no matter how we all feel, everything from headaches to bone pain and back, we all have hope, love, and friendship. And that makes us do it again another day.
Thank You, one day we all shall meet, and feel no pain...........
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Rosevalley - you said it all and you said it so well! Thank you. (I hate the "you look so good" - what am I supposed to look like???).
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I'm just going to jump right down here and say well done Calico! I did not read the rebuttal yet. I had to go for my Xgeva shot and to see the doc. Not the best of visits, but not terrible either. Sure could use a tranquilizer though. Anyway, I'm going back up to read the rebuttal. Your comment was great though.
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Wow Rose! Your post is amazing. Somewhere along the line I misplaced my ability to write, so when I read someone else who is describing so well the feelings I have, I am grateful. Somehow it provides the same release as writing it used to give me. Thanks.
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I work in the publishing business, and not only have I met Richard Smith, but I've seen his work for many years. To put it simply, he's an a--. He loves to make controversial statements just to get people going. He's usually starts on the ledge but eventually jumps right off.
Our usual approach is to ignore him, but Calico, I do appreciate your rebuttal.
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I love this thread 4 me it is all about qol, which is why i stopped chemo, it is much better but still attached oxygen 24 7 which sucks, but i can go to the mall with help nn the football n baseball games i was missing. Now in rehab cause i broke my ankle in 3 places, been going on 4 4 weeks. It is always somethhing but to give up even tho i am terminal is not an option, keep plugging along
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pajim - I love your post. I never heard of the man before, so no history for me. Thanks for the perspective! I was kind of wondering what wold motivate someone to make such comments.
Hi Blondie! You look better and I love your purple cast. I hope they are feeding you well and PT isn't too hard in the rehab place. MAy you heal nicely and not be too bored.
Has anyone heard from Raro ?
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I am the one to throw stones at as I am the one to make the comment to Rosevalley, saying that perhaps this was not the thread to discuss especially negative aspects of faith. I am a Christian and find those who bash "Christianity" offensive; especially on stage iv threads. I did feel her comments were hers, but she did not have to bash "Christianity"...or would I someone elses choices. What was difficult for me is blaming Christianity for whatever. Being buddist is a decision she made...but does not make Christianity the monster religion. I was just saying Christianity is a relationship with God..not another religion.Apparently BCO is not a place for me to find comfort. I have nothing against Rosevalley or anyone here. I too am fighting a life threatening disease and was given but a few months to live (last summer). I have gone through quite the battle, but by God's grace still standing on my feet due to a lot of praying friends. Yet, I know that in God's timing I will step into God's kingdom. In this daunting time for me as well, I have peace.
I have breast cancer in my lungs, liver, bones, spine, lymphatic system and had 4 zapped in my brain. I know that my time on earth is limited so I came here looking for preparation for my end of days and emotional support. I am apparently not too like here. It is okay because I am okay. This is not where I'm getting my support. I will delete any threads I have right here. Won't bother you all again.
God Bless.
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