5 ms·

I've chatted with friends about my desires should I get a cancer that is more likely to kill and not be treatable, to refuse chemo, and to live what remains of

by buro9 11y ago

I've chatted with friends about my desires should I get a cancer that is more likely to kill and not be treatable, to refuse chemo, and to live what remains of my life qualitatively rather than quantitatively. I would plan how best to handle my death, and aim to enjoy every moment before a quick and severe pain takes over and does the job. Some have said this is a selfish viewpoint, that I should stay around longer for the ones I love. But the reverse is true, it is selfish of those that love to demand quantity over quality, especially when it slowly strips away the very being of a person. All we can do is live a life fully, but that isn't "as long as possible", it is "as much as possible".

concerto 11y ago
Everyone's choice is personal, and while it is not fair for people to say your hypothetical choice would be selfish, I would also ask you to be careful about your judgements on others who are actually facing this and have made a different choice.
teekert 11y ago
Why would you let that pain even take over, why not gently increase Morphine as you go? That is how it's done here in the Netherlands and, I guess also in Canada now. A friend of mine (then 24) went home to die even though doctors still wanted to treat him. But as everyone else he didn't want to die alone, in a hospital. He went home, had a cigarette, stared over the sea, drank a beer with his soccer mates. Within 2 weeks he died. His way. those two weeks were a lot more valuable than the 2 months just spend in isolation because of the absence of an immune system. I'd definitely choose quality over quantity, it sounds bizarre to me that you yourself would not be the person allowed to make that choice in some countries.
- marincounty 11y ago
  My father died of liver cancer. He was under the care of Hospice. They gave my father enough drugs (Morphine, benzodiazepines, ect.) in the beginning. He lived two months pretty happy. He liked the effects of the drugs. My father was a pretty hardcore drinker, but very functional throughout his life. He was also very conservative, and would never take an drug that wasen't legal. Growing up, every once in awhile, he would tell me, "I think I would like the effect of heroin, but I would never take it." My father could never seem to relax, kinda like myself, and my brother. Even as a kid, I knew my father needed to switch up his drugs, but I knew there wasen't much of a choice. As the years went by, I asked him to see a psychiatrist. Of course he said no. "But dad, you have this great union insurance--just see if the Dr. has anything for you." He never went, and I don't know if any doctor would give him anything--other than a detox program. What the doctor didn't know is my father stopped drinking for two months in his thirties. He felt better, but it was obvious he was nervous. He went right back to drinking. The problem is, I really think, my father needed a drug like clonezepam before he went into detox. Anyway, he never went. My experience with Psychiatry is they gave me anti-anxiety medication, but it just was never enough. Years later, my doctor gave me a off-label drug that did the trick. I just wish the Dr. would have tried the harder drug years earlier. Back to my father last two months. He was pretty functional, and liked the effects of the medication. In those two months, I thought my father would turn into a more compassionate person. He didn't. He spent his free time deciding who was going to get his money. My sister, and brother both tried to manipulate him, but my father seemed to like the attention? I stayed out of the drama--just because. Well after two months, the drugs weren't enough. He needed more, but the hospice Dr. was way to prudent on the amounts. My father only saw the Dr. once, and every other communication was by phone. The hospice nurse arrived, I believe, a week before he died. We asked her for more drugs. She said, he just needs us around him. He was misserable that week. My greedy sister kept lessening his medication so he would wake up. He would wake up misserable. The nurse thought it was o.k.--like it was an act of love. I never told the nurse, but my sister wants him up to sign a trust. I got the feeling even if I told the nurse how manipulative my sister is, I don't think the nurse would have done anything. My sister has a way of gaining people's confidence quick. Never understood how people couldn't see through her? My father was under medicated that final week. There was not enough meds on hand. My sister had the nurse under her spell. Plus, the nurse was projecting her own father's death over my father's. The nurse was always crying, and talking how difficult it was when her father died. I'm not questioning the nurse's emotions, and at first found them--honestly--I'm glad she cared enough to show emotion, but her crying made verything more stressful. My father didn't even know who this crying nurse was in the end. My biggest gripe is she let my sister cut back on his pain/anxiety medications. The last three days of my father's life were hell. He would wake up frightened. He was always in intence pain. He was skin and bones. My sister once lifted the sheets and said, "In a way it's interesting? I said, "What?" She said, "Oh, the way the body breaks down." Yea--I was floored. While I knew she loved her father, I didn't say anything. Plus, I knew a death like my father's would be terrible. My father's last words to me were, "Son--when will this end?". I didn't know what to say. I wanted to say, you need more medication, but didn't. He wasen't conscious enough for me to answer his last question. He died two days later. All the family, and nurse were there. The nurse was saying all these new age beliefs, like he knows his loved ones are here. He wants you to talk to him. My sister had her indifferent kids saying kids things into his ears. He was never fond of kids--even his grandkids, so their voices didn't sooth him. I don't even know if he knew who was trying to talk to him? He kinda rswatted them away from the bed. The last two days where horrid. He wasen't conscious, but he felt pain. So much pain. Pain! He was back to full doses of medication, but it wasn't enough. I called the doctor, and said he needs more. The Doctor said any more, and he might die. I didn't argue. I was an emotional mess. I was just thinking what's wrong with dying at this point? I left an hour before my father passed. The rest of the family was there. I just didn't want to see him die like this. I knew he wasen't responding to us, but still had that horrid pain. There's a part of me that feels guilty for not being there. I figured what's the point of watching my father in so much pain. I found the professionals really had no answers in my father's death. I got home and had a few glasses of wine, and got a call an hour later. "He died." I told my sister I'm sorry. She called back a month later, and wondered why her mother, nor myself weren't calling her. I made up some excuse. When my father died, It was so painful--I'm still not quite over it. It has been 11 years and 5 months. Even though we didn't get along; the way he died greatly affected my life. In a weird way, part of me died that day. (I hate to say this, but when my time comes, I don't want to go the way my father did. If I'm well enough, and have the money I will go and buy drugs off the streets. I've never even bought drugs before, but I think if I have the energy I will try it? Maybe? If I'm still in CA, and we have a Right to Die bill that just passed. Sorry, I went on. The man who's writing these brave posts is hitting me hard. I'm glad he's bringing death out in the open though.)
  - bcook 11y ago
    Thanks for sharing that, in all it's gritty detail.
  - brianwawok 11y ago
    Side note - good example of why if you have kids get all the will stuff taken care of before you get sick. Dying sucks enough to not mix kids fighting for your stuff in it.
  - exolymph 11y ago
    Thank you for sharing your story. I'm sorry that this was such a painful experience.
notjosh 11y ago
As a cancer survivor, I feel so conflicted about this. On one hand, I can completely understand where you're coming from. But on the other hand, I think seeing things in such black and white terms is pretty shortsighted. When there's a terminal prognosis, many/most doctors will offer an array of treatments and therapies to help manage symptoms without trying to make you feel worse. There are several middle-grounds that can help extend life without prolonging it (a fairly semantic, but very important difference). Which, of course, leads to my next major gripe: end of life treatments (even outside of cancer) are generally awful. Euthanasia and assisted suicide laws are sorely lacking. Palliative care systems tend to stretch people's last days out so thin, it's awful. So, despite refusing treatment, you may still end up in palliative care in undignified and grim circumstances. That's a tragedy. We need to do better.
- buro9 11y ago
  I remember reading this: http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/ http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die... It moved me greatly, and also resonated because shortly after a friend of mine at the time, a cyclist with a wonderful personality and charisma, was diagnosed with a stomach cancer and within two weeks, on New Year's Eve, he died. I remember him in hospital, he knew what was coming, had taken his last ride, had refused chemo, and was now in bed dying. I remember vividly how he comforted another friend who was crying, he was in bed, in pain, and told the other friend it would be alright. How the pain wasn't so bad now, and how he would be riding soon (when he knew full well he wouldn't and the pain was causing him to wince). It occurred to me how much he, in those last days, did more to calm and comfort the people around him, how he took so little from them. And it occurred to me how much joy he had in those last few rides, the sun on his skin as he glided around country lanes just South of London. It reinforced what I'd read about how Doctors die. Reinforced my personal view that life is more than a number of days. Just as work is more than a salary alone. My wife knows of this opinion and choice, she's very strongly communicated the same opinion, and even the manner and form of her funeral. We choose to go when the time has come, and to live life fully until that moment. Some things we would live with, but other things, with a terminal prognosis, we would embrace as the striking of the final hour. Instead of spending that hour attempting to lengthen it, we choose to live and savour every moment of it.
PieterH 11y ago
I've had chemo twice now, the first time I got this cancer and now a different mix (folfox). The negative effects are painful yet really minor compared to the potential of getting rid of your tumor or cancer. The first chemo (gemcytabin) was once per week, three weeks, then pause, then again, over six months. This one is two days every fortnight, for six months. The first time I was tired and a little nauseous. This time I was pretty bad for two days after the drugs, and ended up on small doses of stuff I suspect they give to psychiatric patients, to calm my vomiting. It is still worth doing, for two reasons. One, the chemo can and does work even when the chances are low. A day or two of feeling shit is minor, compared to the chance of not dying. This notion that chemo somehow ruins your life is not accurate, generally. Secondly, the data goes back to medical research. This is the only reason I did the chemo both times because we all know bile duct cancer just doesn't respond to chemo. But they have to keep trying different things, and one day something will work, and then they'll refine it, and it'll save lives down the line. I'm going to write another article, about how to be happy and "life as much as possible" even with chemo. It is about simple things like having lots of company and talking openly about your situation.
devishard 11y ago
> Some have said this is a selfish viewpoint, that I should stay around longer for the ones I love. But the reverse is true, it is selfish of those that love to demand quantity over quality, especially when it slowly strips away the very being of a person. I totally agree with this, but I have a hard time seeing why this logic shouldn't also be applied to people with extreme chronic depression that doesn't respond to treatment. How can we demand that someone live in for a decade or more while the very chemical structure of their brain won't let them be happy? Of course, suicide shouldn't be chosen lightly or irrationally, and it's hard for a depressed person to rationally know when they've exhausted all their options. It may be outside the capabilities of a depressed person to rationally choose suicide. But I have my doubts that suicide is always irrational. If I were considering committing suicide, I'd want to be able to approach my friends with that decision and know they would help me make the right decision for my situation, not repeat positivist rhetoric and call me selfish. Even if suicide really is the wrong choice for someone, I'm not convinced that the "suicide is always selfish" narrative helps that person. Instead, I think it might discourage them from talking about it, which makes everything worse. EDIT: I'm not suicidal, not depressed, not even temporarily sad. I've just been close to some people who have been depressed for decades, and I feel like the usual narrative around often does them more harm than good.

by buro9 11y ago

concerto 11y ago

Everyone's choice is personal, and while it is not fair for people to say your hypothetical choice would be selfish, I would also ask you to be careful about your judgements on others who are actually facing this and have made a different choice.

teekert 11y ago

Why would you let that pain even take over, why not gently increase Morphine as you go? That is how it's done here in the Netherlands and, I guess also in Canada now. A friend of mine (then 24) went home to die even though doctors still wanted to treat him. But as everyone else he didn't want to die alone, in a hospital. He went home, had a cigarette, stared over the sea, drank a beer with his soccer mates. Within 2 weeks he died. His way. those two weeks were a lot more valuable than the 2 months just spend in isolation because of the absence of an immune system. I'd definitely choose quality over quantity, it sounds bizarre to me that you yourself would not be the person allowed to make that choice in some countries.

marincounty 11y ago
My father died of liver cancer. He was under the care of Hospice. They gave my father enough drugs (Morphine, benzodiazepines, ect.) in the beginning. He lived two months pretty happy. He liked the effects of the drugs. My father was a pretty hardcore drinker, but very functional throughout his life. He was also very conservative, and would never take an drug that wasen't legal. Growing up, every once in awhile, he would tell me, "I think I would like the effect of heroin, but I would never take it." My father could never seem to relax, kinda like myself, and my brother. Even as a kid, I knew my father needed to switch up his drugs, but I knew there wasen't much of a choice. As the years went by, I asked him to see a psychiatrist. Of course he said no. "But dad, you have this great union insurance--just see if the Dr. has anything for you." He never went, and I don't know if any doctor would give him anything--other than a detox program. What the doctor didn't know is my father stopped drinking for two months in his thirties. He felt better, but it was obvious he was nervous. He went right back to drinking. The problem is, I really think, my father needed a drug like clonezepam before he went into detox. Anyway, he never went. My experience with Psychiatry is they gave me anti-anxiety medication, but it just was never enough. Years later, my doctor gave me a off-label drug that did the trick. I just wish the Dr. would have tried the harder drug years earlier. Back to my father last two months. He was pretty functional, and liked the effects of the medication. In those two months, I thought my father would turn into a more compassionate person. He didn't. He spent his free time deciding who was going to get his money. My sister, and brother both tried to manipulate him, but my father seemed to like the attention? I stayed out of the drama--just because. Well after two months, the drugs weren't enough. He needed more, but the hospice Dr. was way to prudent on the amounts. My father only saw the Dr. once, and every other communication was by phone. The hospice nurse arrived, I believe, a week before he died. We asked her for more drugs. She said, he just needs us around him. He was misserable that week. My greedy sister kept lessening his medication so he would wake up. He would wake up misserable. The nurse thought it was o.k.--like it was an act of love. I never told the nurse, but my sister wants him up to sign a trust. I got the feeling even if I told the nurse how manipulative my sister is, I don't think the nurse would have done anything. My sister has a way of gaining people's confidence quick. Never understood how people couldn't see through her? My father was under medicated that final week. There was not enough meds on hand. My sister had the nurse under her spell. Plus, the nurse was projecting her own father's death over my father's. The nurse was always crying, and talking how difficult it was when her father died. I'm not questioning the nurse's emotions, and at first found them--honestly--I'm glad she cared enough to show emotion, but her crying made verything more stressful. My father didn't even know who this crying nurse was in the end. My biggest gripe is she let my sister cut back on his pain/anxiety medications. The last three days of my father's life were hell. He would wake up frightened. He was always in intence pain. He was skin and bones. My sister once lifted the sheets and said, "In a way it's interesting? I said, "What?" She said, "Oh, the way the body breaks down." Yea--I was floored. While I knew she loved her father, I didn't say anything. Plus, I knew a death like my father's would be terrible. My father's last words to me were, "Son--when will this end?". I didn't know what to say. I wanted to say, you need more medication, but didn't. He wasen't conscious enough for me to answer his last question. He died two days later. All the family, and nurse were there. The nurse was saying all these new age beliefs, like he knows his loved ones are here. He wants you to talk to him. My sister had her indifferent kids saying kids things into his ears. He was never fond of kids--even his grandkids, so their voices didn't sooth him. I don't even know if he knew who was trying to talk to him? He kinda rswatted them away from the bed. The last two days where horrid. He wasen't conscious, but he felt pain. So much pain. Pain! He was back to full doses of medication, but it wasn't enough. I called the doctor, and said he needs more. The Doctor said any more, and he might die. I didn't argue. I was an emotional mess. I was just thinking what's wrong with dying at this point? I left an hour before my father passed. The rest of the family was there. I just didn't want to see him die like this. I knew he wasen't responding to us, but still had that horrid pain. There's a part of me that feels guilty for not being there. I figured what's the point of watching my father in so much pain. I found the professionals really had no answers in my father's death. I got home and had a few glasses of wine, and got a call an hour later. "He died." I told my sister I'm sorry. She called back a month later, and wondered why her mother, nor myself weren't calling her. I made up some excuse. When my father died, It was so painful--I'm still not quite over it. It has been 11 years and 5 months. Even though we didn't get along; the way he died greatly affected my life. In a weird way, part of me died that day. (I hate to say this, but when my time comes, I don't want to go the way my father did. If I'm well enough, and have the money I will go and buy drugs off the streets. I've never even bought drugs before, but I think if I have the energy I will try it? Maybe? If I'm still in CA, and we have a Right to Die bill that just passed. Sorry, I went on. The man who's writing these brave posts is hitting me hard. I'm glad he's bringing death out in the open though.)
- bcook 11y ago
  Thanks for sharing that, in all it's gritty detail.
- brianwawok 11y ago
  Side note - good example of why if you have kids get all the will stuff taken care of before you get sick. Dying sucks enough to not mix kids fighting for your stuff in it.
- exolymph 11y ago
  Thank you for sharing your story. I'm sorry that this was such a painful experience.

notjosh 11y ago

As a cancer survivor, I feel so conflicted about this. On one hand, I can completely understand where you're coming from. But on the other hand, I think seeing things in such black and white terms is pretty shortsighted. When there's a terminal prognosis, many/most doctors will offer an array of treatments and therapies to help manage symptoms without trying to make you feel worse. There are several middle-grounds that can help extend life without prolonging it (a fairly semantic, but very important difference). Which, of course, leads to my next major gripe: end of life treatments (even outside of cancer) are generally awful. Euthanasia and assisted suicide laws are sorely lacking. Palliative care systems tend to stretch people's last days out so thin, it's awful. So, despite refusing treatment, you may still end up in palliative care in undignified and grim circumstances. That's a tragedy. We need to do better.

buro9 11y ago
I remember reading this: http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/ http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die... It moved me greatly, and also resonated because shortly after a friend of mine at the time, a cyclist with a wonderful personality and charisma, was diagnosed with a stomach cancer and within two weeks, on New Year's Eve, he died. I remember him in hospital, he knew what was coming, had taken his last ride, had refused chemo, and was now in bed dying. I remember vividly how he comforted another friend who was crying, he was in bed, in pain, and told the other friend it would be alright. How the pain wasn't so bad now, and how he would be riding soon (when he knew full well he wouldn't and the pain was causing him to wince). It occurred to me how much he, in those last days, did more to calm and comfort the people around him, how he took so little from them. And it occurred to me how much joy he had in those last few rides, the sun on his skin as he glided around country lanes just South of London. It reinforced what I'd read about how Doctors die. Reinforced my personal view that life is more than a number of days. Just as work is more than a salary alone. My wife knows of this opinion and choice, she's very strongly communicated the same opinion, and even the manner and form of her funeral. We choose to go when the time has come, and to live life fully until that moment. Some things we would live with, but other things, with a terminal prognosis, we would embrace as the striking of the final hour. Instead of spending that hour attempting to lengthen it, we choose to live and savour every moment of it.

PieterH 11y ago

I've had chemo twice now, the first time I got this cancer and now a different mix (folfox). The negative effects are painful yet really minor compared to the potential of getting rid of your tumor or cancer. The first chemo (gemcytabin) was once per week, three weeks, then pause, then again, over six months. This one is two days every fortnight, for six months. The first time I was tired and a little nauseous. This time I was pretty bad for two days after the drugs, and ended up on small doses of stuff I suspect they give to psychiatric patients, to calm my vomiting. It is still worth doing, for two reasons. One, the chemo can and does work even when the chances are low. A day or two of feeling shit is minor, compared to the chance of not dying. This notion that chemo somehow ruins your life is not accurate, generally. Secondly, the data goes back to medical research. This is the only reason I did the chemo both times because we all know bile duct cancer just doesn't respond to chemo. But they have to keep trying different things, and one day something will work, and then they'll refine it, and it'll save lives down the line. I'm going to write another article, about how to be happy and "life as much as possible" even with chemo. It is about simple things like having lots of company and talking openly about your situation.

devishard 11y ago

> Some have said this is a selfish viewpoint, that I should stay around longer for the ones I love. But the reverse is true, it is selfish of those that love to demand quantity over quality, especially when it slowly strips away the very being of a person. I totally agree with this, but I have a hard time seeing why this logic shouldn't also be applied to people with extreme chronic depression that doesn't respond to treatment. How can we demand that someone live in for a decade or more while the very chemical structure of their brain won't let them be happy? Of course, suicide shouldn't be chosen lightly or irrationally, and it's hard for a depressed person to rationally know when they've exhausted all their options. It may be outside the capabilities of a depressed person to rationally choose suicide. But I have my doubts that suicide is always irrational. If I were considering committing suicide, I'd want to be able to approach my friends with that decision and know they would help me make the right decision for my situation, not repeat positivist rhetoric and call me selfish. Even if suicide really is the wrong choice for someone, I'm not convinced that the "suicide is always selfish" narrative helps that person. Instead, I think it might discourage them from talking about it, which makes everything worse. EDIT: I'm not suicidal, not depressed, not even temporarily sad. I've just been close to some people who have been depressed for decades, and I feel like the usual narrative around often does them more harm than good.