Just an interesting related tangent here: My father in law is dying of heart disease (will probably die in < 1 month) and we run into the same thing.
People see me upset and the first thing they say is he will get better, or, it will be ok. When I explain the situation, it's something like, "oh, well, I just KNOW he will get better. Don't worry"
What?
In case you are wondering: He has already had open heart 2 years ago, 4 of 5 arteries are completely blocked again (and those are already bypasses that are blocked again) and the remaining 1 is at 40% blocked. He found all this out when he went to one of the best heart hospitals in the world and they sent him home: "There is nothing we can do." Again, the open heart to bypass all 5 was only 2 years ago, so the math is pretty straightforward on how long the one artery will last.
He has something in his genetics in his family that makes it so this will happen pretty much no matter what he does.
The advice is endless. He has done his research and I believe he has had some real success in delaying this, he has outlived his younger brother by ~20 years (who died in a similar situation at 34). But it's over now.
I am trying to help his family get everything in order. And while it's sobering, it can be a very positive experience. But I wish our friends would stop telling us he'll be fine.
There is also this commonly held notion that if you "live right", with healthy habits, food, and exercise, you will live to 98 in perfect health, and probably die of an instant heart attack while in bed with a young lover. It's of course true that obesity and lack of exercise increase health risks at all ages, but that risk was never going to be 0. The notion that I mentioned basically makes health problems into a morality play. I've even seen people get angry at the fact that statins can reduce heart disease risk in an "unearned" way - they can't accept that. The fact is that blood vessels and everything else lose function with increasing age, at a different rate for different people.
i also hate saying and hearing platitudes, but recognize that it's only because people don't know what else to say. by telling them about this unfortunate situation, you're kind of putting them into that position.
these days i only tell my problems to people who have the ability to do something about it, or my closest friends who will commiserate without offering useless responses.
Hope is the humanities desired result, we all hope for the miracle. Once in a great while it happens.
Good luck. The paper work for these things is the hardest, and making sure the executor of the estate is up to the task. I do hope you've been able to get the family to see an actual accountant to do as much as possible while he lives so the tax burden and hassle will be lower. Its a serious pain in the butt to deal with bureaucrats when you really want to deal with family.
It is a really weird situation (I'm trying to put myself in your friends position). I guess I'd revert into this BS nice talk as a way to help you emotionally (even though I know it's BS).
So -assuming that I do care and that situation makes me sad- what am I supposed to say? How could I really help?
I found out I had colorectal cancer 4 years ago at 33. It was a shock because I go to the gym 4-5 times a week and taught brazilian jiu jitsu nightly. There no living right or living wrong prescription that will spare you. It can catch anyone at any time just like the author states.
Aside from dealing with the disease, one of the biggest issues I found was disbursing information and managing the emotions of my friends and family. Everyone has questions on your daily status and a few think they can come in a provide the superman holistic miracle that will spare you from death. It's tough to balance it all.
Nobody really gets terminal illness until you're either terminally ill, or right on the fringe of it. Even those of us who are one degree away from it only have the vaguest notion of it. It seems like something on the order of 30% of human prose ever written struggles with this notion of mortality [1], yet very few words are devoted to how to care about someone who is terminally ill, and even fewer on how to be there for them, providing encouragement without some kind of cheerleading. Part of this is because everyone is different, and some people really do want some of that. But my experience with it in this day is that those people are in the minority.
Thank you Pieter, for sharing your words with the world on this most personal of experiences.
[1] Totally made up statistic based on my gut feeling, so please don't bother asking for a citation.
The book, When Breath Becomes Air, is about the best thing I've ever read relating to terminal illness. It was written by Dr Paul Kalanithi, a brilliant neurosurgery resident at Stanford.
That might be your perspective but after being in hospitals and treatment for a lifetime condition, I saw enough of my peers die by the age of 10 that I think I have a pretty good handle on mortality. It's just a very uncomfortable subject, which I think hinges on our species not knowing "what happens" after the body dies. Well, there are lots of claims and plenty of options by way of choosing a faith, but I'm fairly certain we simply don't know.
Powerful article. Something I can share from my own ordeal. When you first get diagnosed most people are strong and defiant "I'm going to beat this thing!". It is the following weeks and months, the follow up scans that show the darn thing is back or not reduced that eventually wear you down. If you know someone that's afflicted please keep in touch throughout or space out your acts of kindness. I found that initially everyone wanted to help (an outpouring) and in later months some help would have been useful.
I've just saw my father die of cancer a week ago. Fortunately, he did this at home and was cared for by his own family, right to the end.
I wouldn't describe this experience as sad or tragic. We knew for a while that the moment was coming. I was lucky enough to be with my dad when he took his last breath, and to have been able to say goodbye. I learned a lot about what to do and what not to do in the face of imminent death.
Similar experience here. My otherwise perfectly healthy, vegan, athletic wife died of sporadic metastatic pancreatic cancer four months ago at age 36. She battled it for five months after discovery (this is how pancreatic cancer often works), and although it was an incredibly tough struggle, the fact that we both had lived with no regrets and taken the opportunities available to us (and made some new ones) helped when her time finally came. Although she was very ill the whole time, everything "at the end" happened inside of about four days. I didn't know until hours before that it actually was the end, and I'm not sure she ever did. But having lived well until that point somehow made it easier.
We knew it was terminal almost immediately from the outset, with a prognosis of a year if we were lucky, and we fought it with guns blazing the whole way while balancing a good quality of life during those months. In some small way, the duration of her fight was a blessing compared to some other cases I've heard (less than a month from diagnosis to death, or a terrible quality of life for a year or two).
Just as with my grieving now, everyone's handling of their own and their loved ones' preparedness for death is different and based on their own unique circumstances. I am glad that Pieter has shared his.
Went through the same thing 14 months ago. I often think about that poem "Do not go gentle into that good night"... and contrast it's theme with my father's and our family's calm acceptance of the inevitable. It was hard and sad, but peaceful with a tremendous amount of love all around near the end.
The outpouring of support was unbelievable. People I didn't know would do amazing things for my son and family. I saw this boy with one of the saddest stories (He was adopted) and a broken spirit before cancer became a amazing young man in the midst of his slow painful death.
His own biological family did very little during this time. Father murdered his mother less then a year after his diagnosis and family and close friends just didn't come around after a few months, "To painful to visit." I would flip out! Then I realized you just get to find out who is a true friend and family. So some will leave people high and dry others will see you all the way through.
A beautiful read, for many of the reasons already mentioned here.
I'm inclined to rethink this one question, though:
> Can a single individual patient second-guess the medical machine? Is that really their duty?
I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.
I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening.
Yet given that, it seems highly risky to me to even be open to the notion that I can second-guess the machine. That is, to find a better treatment, using my own knowledge and that of the Internet, friends, family, etc.
The risks are well known: endless 'alternative' cures that prey on the most vulnerable, taking their money and time, and leaving them to die. It ranges from amateurish nonsense to sociopathic predation. The common thread is patients who don't trust the medical machine, and think they can do better.
So when people tell me that I can find a cure, if I look harder, my reaction is "oh piss off!," before I delete their email. That is not my duty, not within my power, not for a disease like cancer. I mean, even looking for a "better" clinic is such a major undertaking that it lives in a different universe than mine.
I do trust my doctors. They won't cure me, yet they will look after me, manage my pain, and when it comes to it, they will help me die smoothly and easily.
I think it is super important to answer yes to that question as a patient.
At the end of the day, it it your body. You are responsible for it. You may not be an expert in what all of it does in its majestic form and function, but that is why doctors, nurses, and researchers exist.
You live in it. When you are explaining stuff, be it pain or pleasure, to a doctor, that experience is mediated by the sheer fact that your doctor is not you and does not live in your body, does not receive sensory input from your body. Your doctor receives sensory input from his/her body.
Even if your doctor has extremely similar experiences, there is no guarantee that they will fully understand you and your predicaments. Most doctors in the US know what a severe sunburn looks like, and many will have had them growing up. Most also have not seen Phytophotodermatitis (aka lime disease http://www.theatlantic.com/science/archive/2016/07/burned-by... ), nor will have had them growing up. With the growth of artsinal cocktails and people realizing fresh citrus juice tastes better, it's occurring more frequently. Now there is an educational push,but that doesn't equal expedient treatment and lots of doctors recognizing on sight yet before it gets bad.
While Phytophotodermatitis is a trivial example, for patients with serious diseases (and not serious but not common ones too) the example holds and can be expanded. Patients banding together to change this is generally what causes major changes in healthcare policy in the US president,as well as direction in research. (The most famous example is in the late 90s/early 00 with aids via act up nyc. The documentary "how to survive a plague" covers this extremely well")
So yes, you totally should question. You totally have more power than you think. Act on it.
> I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.
Try other things and odds are very good your going to make things worse and get many people killed. Yet, some people still don't use seat belts because of those tiny odds it's going to make things worse. Let's avoid vaccines, buy guns, and go vegan because clearly we are a special snowflake unlike those other drones.
Sorry, you and everyone you ever know, or even read about are going to die relatively soon. Such is life and death. But, not thinking about it well that's easy.
> I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.
I think the more important take-away is each patient should find the treatment that works for them. There are many people who are fully accepting/trusting (whatever term you choose) of the "machine". It works for them, don't knock it.
There are other people who want, and/or need, to look for alternatives. Some of them work and work very well. But, some people don't have the stomach for that, or they second-guess the idea that they "could have done more".
I had a good friend die from cancer a few months ago. After the first surgery and round of chemo, his Oncologists told him all was well, full remission. About a year later, it returned somewhere else. More surgeries, more chemo, full remission.
The third time, now in his lungs and brain, they said even with surgery and chemo he had about 6 months to live. Instead, he took the route of alternative treatments in the US, Mexico & Canada. All of these treatments were by fully licensed Oncologists who have been practicing for 20+ years.
Every 3 months his "machine" Oncologists said they were surprised to see him for another follow-up visit.
This went on for 5 more years.
> The only way to beat cancer, really, is to die from something else first.
That was a short and pointed article.
More so after I read a short comic strip on PHD Comics about cancer [1], I can't help but think that "beating cancer" is a very tough (and impossible) goal for the ones suffering from it and the ones looking for better management or reduction of it.
That shining light of optimism after remission is tinged with a hint that a recurrence is just a little while away, and could possibly be the end of life. I also wonder if what happens before death is more painful than the heartbreak that death eventually brings.
A important post for those of us that don't know Pieter since it reinforces that your personal attitude does not change the outcome of cancer [1]. Cancer is a horrific disease, but it is not one that bends to our will, only our science.
I also read one of his previous posts on how to prepare the family, and talk with friends about dying. I've rarely been so moved by a post and had such an understandment of the situation, than from his posts. I think they are a must read for most people, as we'll most likely encounter it either through friends or family, or ourselves.
This is a very touching and generous post. I remember the kinds of diet and treatment advice my partner would get when she was fighting cancer, all of it well-intentioned, and wish those people had read this article.
I came to the thread to recommend a recent book by Atul Gawande, Being Mortal, http://atulgawande.com/book/being-mortal/, which covers the difficulties of dying (from age or from illness) and touches on many of the same points as this amazing post.
An excellently written piece, with a perspective that can only be communicated by someone who is walking that path (so to speak). The thought that the whole "You WILL get better" or "keeping fighting!" notion highlights for me is how taboo of a subject death and dying is in many cultures (very much including Western culture). I truly believe the reason people say such cruel and selfish things is because they cannot bring themselves to talk about the topic of death. It's something we are taught to ignore until we cannot possibly do so any longer. I feel like we might live better lives if we talked about death and dying openly and throughout our lives.
In a way, it's similar in nature to how people will, with best intentions, tell you to smile more if you have depression.
I think the issue is many people don't understand the problem and they can't see it. In fact, someone with a common cold can expect to get more sympathy and better advice than someone with a chronic illness. The second issue is that many people struggle to think of something to say, its quite uncomfortable and the automatic choice is to give advice.
It's a sad reality, but when it comes to people I've come to accept that by default you should expect malice and selfishness unless otherwise is proven (not that I condone being an ass to other people, but just don't trust intentions by default).
I am not sure why cryonics are not in the menu of every reader here when he has the opportunity (you don't have it if you die in a sudden accident) to subscribe when it seems inevitable to die.
Every time I see his posts I think about the book The Tibetan Book of Living and Dying. I would recommend reading it for anyone who might be having the discussion or dealing with death in their life.
[+] [-] Practicality|9 years ago|reply
People see me upset and the first thing they say is he will get better, or, it will be ok. When I explain the situation, it's something like, "oh, well, I just KNOW he will get better. Don't worry"
What?
In case you are wondering: He has already had open heart 2 years ago, 4 of 5 arteries are completely blocked again (and those are already bypasses that are blocked again) and the remaining 1 is at 40% blocked. He found all this out when he went to one of the best heart hospitals in the world and they sent him home: "There is nothing we can do." Again, the open heart to bypass all 5 was only 2 years ago, so the math is pretty straightforward on how long the one artery will last.
He has something in his genetics in his family that makes it so this will happen pretty much no matter what he does.
The advice is endless. He has done his research and I believe he has had some real success in delaying this, he has outlived his younger brother by ~20 years (who died in a similar situation at 34). But it's over now.
I am trying to help his family get everything in order. And while it's sobering, it can be a very positive experience. But I wish our friends would stop telling us he'll be fine.
[+] [-] yaakov34|9 years ago|reply
[+] [-] beachstartup|9 years ago|reply
these days i only tell my problems to people who have the ability to do something about it, or my closest friends who will commiserate without offering useless responses.
[+] [-] protomyth|9 years ago|reply
Good luck. The paper work for these things is the hardest, and making sure the executor of the estate is up to the task. I do hope you've been able to get the family to see an actual accountant to do as much as possible while he lives so the tax burden and hassle will be lower. Its a serious pain in the butt to deal with bureaucrats when you really want to deal with family.
[+] [-] FuNe|9 years ago|reply
So -assuming that I do care and that situation makes me sad- what am I supposed to say? How could I really help?
[+] [-] jmichelz|9 years ago|reply
[deleted]
[+] [-] mkriss|9 years ago|reply
[deleted]
[+] [-] WoodenChair|9 years ago|reply
[deleted]
[+] [-] darod|9 years ago|reply
Aside from dealing with the disease, one of the biggest issues I found was disbursing information and managing the emotions of my friends and family. Everyone has questions on your daily status and a few think they can come in a provide the superman holistic miracle that will spare you from death. It's tough to balance it all.
Like the author, I hate this notion of "fighting cancer". Norm MacDonald sums it up best. http://www.cc.com/video-clips/8kgu68/stand-up-norm-macdonald...
[+] [-] karmajunkie|9 years ago|reply
Nobody really gets terminal illness until you're either terminally ill, or right on the fringe of it. Even those of us who are one degree away from it only have the vaguest notion of it. It seems like something on the order of 30% of human prose ever written struggles with this notion of mortality [1], yet very few words are devoted to how to care about someone who is terminally ill, and even fewer on how to be there for them, providing encouragement without some kind of cheerleading. Part of this is because everyone is different, and some people really do want some of that. But my experience with it in this day is that those people are in the minority.
Thank you Pieter, for sharing your words with the world on this most personal of experiences.
[1] Totally made up statistic based on my gut feeling, so please don't bother asking for a citation.
[+] [-] sib|9 years ago|reply
https://www.amazon.com/dp/B00XSSYR50/
[+] [-] 6stringmerc|9 years ago|reply
[+] [-] nixarn|9 years ago|reply
[+] [-] rralian|9 years ago|reply
[+] [-] kevindeasis|9 years ago|reply
[+] [-] univalent|9 years ago|reply
[+] [-] ciconia|9 years ago|reply
I wouldn't describe this experience as sad or tragic. We knew for a while that the moment was coming. I was lucky enough to be with my dad when he took his last breath, and to have been able to say goodbye. I learned a lot about what to do and what not to do in the face of imminent death.
[+] [-] incanus77|9 years ago|reply
We knew it was terminal almost immediately from the outset, with a prognosis of a year if we were lucky, and we fought it with guns blazing the whole way while balancing a good quality of life during those months. In some small way, the duration of her fight was a blessing compared to some other cases I've heard (less than a month from diagnosis to death, or a terrible quality of life for a year or two).
Just as with my grieving now, everyone's handling of their own and their loved ones' preparedness for death is different and based on their own unique circumstances. I am glad that Pieter has shared his.
[+] [-] DougN7|9 years ago|reply
[+] [-] woliveirajr|9 years ago|reply
[+] [-] baldfat|9 years ago|reply
The outpouring of support was unbelievable. People I didn't know would do amazing things for my son and family. I saw this boy with one of the saddest stories (He was adopted) and a broken spirit before cancer became a amazing young man in the midst of his slow painful death.
His own biological family did very little during this time. Father murdered his mother less then a year after his diagnosis and family and close friends just didn't come around after a few months, "To painful to visit." I would flip out! Then I realized you just get to find out who is a true friend and family. So some will leave people high and dry others will see you all the way through.
[+] [-] jMyles|9 years ago|reply
I'm inclined to rethink this one question, though:
> Can a single individual patient second-guess the medical machine? Is that really their duty?
I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.
[+] [-] PieterH|9 years ago|reply
Yet given that, it seems highly risky to me to even be open to the notion that I can second-guess the machine. That is, to find a better treatment, using my own knowledge and that of the Internet, friends, family, etc.
The risks are well known: endless 'alternative' cures that prey on the most vulnerable, taking their money and time, and leaving them to die. It ranges from amateurish nonsense to sociopathic predation. The common thread is patients who don't trust the medical machine, and think they can do better.
So when people tell me that I can find a cure, if I look harder, my reaction is "oh piss off!," before I delete their email. That is not my duty, not within my power, not for a disease like cancer. I mean, even looking for a "better" clinic is such a major undertaking that it lives in a different universe than mine.
I do trust my doctors. They won't cure me, yet they will look after me, manage my pain, and when it comes to it, they will help me die smoothly and easily.
[+] [-] shanacarp|9 years ago|reply
At the end of the day, it it your body. You are responsible for it. You may not be an expert in what all of it does in its majestic form and function, but that is why doctors, nurses, and researchers exist.
You live in it. When you are explaining stuff, be it pain or pleasure, to a doctor, that experience is mediated by the sheer fact that your doctor is not you and does not live in your body, does not receive sensory input from your body. Your doctor receives sensory input from his/her body.
Even if your doctor has extremely similar experiences, there is no guarantee that they will fully understand you and your predicaments. Most doctors in the US know what a severe sunburn looks like, and many will have had them growing up. Most also have not seen Phytophotodermatitis (aka lime disease http://www.theatlantic.com/science/archive/2016/07/burned-by... ), nor will have had them growing up. With the growth of artsinal cocktails and people realizing fresh citrus juice tastes better, it's occurring more frequently. Now there is an educational push,but that doesn't equal expedient treatment and lots of doctors recognizing on sight yet before it gets bad.
While Phytophotodermatitis is a trivial example, for patients with serious diseases (and not serious but not common ones too) the example holds and can be expanded. Patients banding together to change this is generally what causes major changes in healthcare policy in the US president,as well as direction in research. (The most famous example is in the late 90s/early 00 with aids via act up nyc. The documentary "how to survive a plague" covers this extremely well")
So yes, you totally should question. You totally have more power than you think. Act on it.
[+] [-] Retric|9 years ago|reply
Try other things and odds are very good your going to make things worse and get many people killed. Yet, some people still don't use seat belts because of those tiny odds it's going to make things worse. Let's avoid vaccines, buy guns, and go vegan because clearly we are a special snowflake unlike those other drones.
Sorry, you and everyone you ever know, or even read about are going to die relatively soon. Such is life and death. But, not thinking about it well that's easy.
[+] [-] edwhitesell|9 years ago|reply
I think the more important take-away is each patient should find the treatment that works for them. There are many people who are fully accepting/trusting (whatever term you choose) of the "machine". It works for them, don't knock it.
There are other people who want, and/or need, to look for alternatives. Some of them work and work very well. But, some people don't have the stomach for that, or they second-guess the idea that they "could have done more".
I had a good friend die from cancer a few months ago. After the first surgery and round of chemo, his Oncologists told him all was well, full remission. About a year later, it returned somewhere else. More surgeries, more chemo, full remission.
The third time, now in his lungs and brain, they said even with surgery and chemo he had about 6 months to live. Instead, he took the route of alternative treatments in the US, Mexico & Canada. All of these treatments were by fully licensed Oncologists who have been practicing for 20+ years.
Every 3 months his "machine" Oncologists said they were surprised to see him for another follow-up visit. This went on for 5 more years.
[+] [-] newscracker|9 years ago|reply
That was a short and pointed article.
More so after I read a short comic strip on PHD Comics about cancer [1], I can't help but think that "beating cancer" is a very tough (and impossible) goal for the ones suffering from it and the ones looking for better management or reduction of it.
That shining light of optimism after remission is tinged with a hint that a recurrence is just a little while away, and could possibly be the end of life. I also wonder if what happens before death is more painful than the heartbreak that death eventually brings.
[1]: http://phdcomics.com/comics.php?f=1162
[+] [-] danieltillett|9 years ago|reply
1. http://www.apa.org/monitor/jan08/cancer.aspx
[+] [-] jimmytidey|9 years ago|reply
This whole story is very moving.
[+] [-] listentojohan|9 years ago|reply
[+] [-] idlewords|9 years ago|reply
I came to the thread to recommend a recent book by Atul Gawande, Being Mortal, http://atulgawande.com/book/being-mortal/, which covers the difficulties of dying (from age or from illness) and touches on many of the same points as this amazing post.
[+] [-] csl|9 years ago|reply
[+] [-] pixelmonkey|9 years ago|reply
https://changelog.com/205/
[+] [-] r3bl|9 years ago|reply
* A Protocol for Dying: http://hintjens.com/blog:115
* Planned Death: http://hintjens.com/blog:116
* Living, in Limbo: http://hintjens.com/blog:121
I have also read his book titled Culture & Empire in the previous couple of months and quite enjoyed it. It's available for free here: https://www.gitbook.com/book/hintjens/culture-empire/details
[+] [-] kohanz|9 years ago|reply
[+] [-] jwdunne|9 years ago|reply
I think the issue is many people don't understand the problem and they can't see it. In fact, someone with a common cold can expect to get more sympathy and better advice than someone with a chronic illness. The second issue is that many people struggle to think of something to say, its quite uncomfortable and the automatic choice is to give advice.
[+] [-] FuNe|9 years ago|reply
[+] [-] Mahn|9 years ago|reply
[+] [-] reactor|9 years ago|reply
[+] [-] arisAlexis|9 years ago|reply
[+] [-] _nullandnull_|9 years ago|reply
https://www.amazon.com/Tibetan-Book-Living-Dying-Internation...