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Fighting Cancer (hintjens.com)
497 points by egorst on Aug 22, 2016 | hide | past | web | favorite | 148 comments



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.


> There is also this commonly held notion that if you "live right"

One of humanity's greatest questions is "Why do bad things happen to good people?"

The inconvenient truth, of course, is that the universe is cold and uncaring, and random chance and statistics means that bad things will happen.

But we humans hate that answer. We crave structure, patterns, cause and effect, order. Why did flooding destroy a city? You must have angered the gods with your sinful ways! There we go. Cause and effect. Peace of mind. Rules have been created. The universe makes sense again.

Why do young people get cancer? They ate the wrong food! They didn't exercise enough! They didn't fight the cancer! They did this, they didn't that. Cause and effect. They broke the rules. And as long as I don't break the rules, bad things will not happen to me. I will never anger the gods, eat the wrong food, or forget to exercise, and those who do, they're immoral and deserve the bad things that happen to them!

And that is why this is a morality play.


I've seen this described as the Just World fallacy. It's pretty engrained in our culture, with supposed religious mechanisms being gradually supplanted by pop scientific theories.


Here's a well-researched and well-phrased blog post on the Just World Fallacy that you (and grandparent post) may find interesting: https://youarenotsosmart.com/2010/06/07/the-just-world-falla...


It is a fact that lifestyle affects likelihood and progression of heart disease. Rare cases that end life early for genetic reasons do not change this. It is unfortunate that some people assume all early heart problems are avoidable, but only because sharing an opinion is unnecessary, not because the assumption is likely wrong.

The morality of not taking care of oneself is subjective, of course.

Edit: I should say I lost a sibling to incurable cancer at a young age. I have heard no end of useless advice about her diet, special almonds, clinics, etc. So I strongly believe in not sharing advice that helps a majority when talking to a particular person, even though I know there are ways to live that reduce likelihood of some cancers.


It is a fact that the effect exists, but I think that you are also victim to the popular idea that this effect is extremely powerful or even overwhelming, making "taking care of yourself" a powerful morality tale. Here is a quote from a large study:

"having a BMI between 30 and 35 shortened life by an average of 0–1 years, having a BMI between 35 and 40 shortened life by 1–3 years, and having a BMI above 40 shortened life by 1–7 years"

(This is easily googlable, I don't want to turn this message into a journal article)

Note that the error bars on the effect are quite large (1 to 7 years even for extreme obesity). Now it's true that a lot of things hide in an "average", and there is a lot to discuss here, and I am definitely not discouraging anybody from acquiring healthy habits and lifestyle, but... it's just not a simple story of reward for virtue and punishment for sins. Genetic factors which we have no control over probably have a greater effect. Which is not a story that people want to hear.


Sure, I understand what you are saying. Those are actually significant findings, though. Keep in mind how good we are at keeping people with progressed heart disease alive. The relatively few years' reduction in lifespan masks, in my cases, early onset of heart disease and years of expensive emergency response, frequent hospitalization, transplants, reduced quality of life, and so on. Better is to look at large meta studies about bmi, smoking, diet, and physical activity as they affect rates of disease as well as mortality. I quickly searched and found many results.

Respectfully, I haven't said anything about living until a very old age. I am only talking about a few diseases and I understand there are a lot of ways to die. I have also said the morality of not trying to extend lifespan is subjective.


What about going the other way? how does having a BMI of 25 to 30, 20 to 25, 15 to 20 work?


The same study says that low BMI is also associated with lower lifespan, and the statistically optimum BMI for white people is 23 to 25 (there are racial differences in all the numbers, which I think also challenges the idea of assigning moral qualities to them).

However, I don't know if I would give too much thought to the effect for low BMI - it could just be that people with extremely low BMI tend to have some disease process which causes that; only a small minority of them are rail-thin athletes. For high and extremely high BMI, there are known causal mechanisms for disease, so it's a different story.


We have a huge environment we live in, plus we shape are environment to an extraordinary high degree. Furthermore, we're actually quite sensitive as organisms to those changes, including in ways where it's only now coming out in some cases because our previous equipment wasn't sensitive enough to register what was happening. We also actually know very little about genetics, genomics, and epigenetic despite posturing that we do. That's why the error bars are big

Fundamentally, actually shrinking that error bar for many diseases is one of the biggest hard science and math problems of the future.

It's going to be so exciting!


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.


I have to agree with this. People can't be expected to know what every individual would prefer to hear in every conceivable circumstance.

Platitudes are often an oblique way of saying "I empathize and I wish you the best" while not being discouraging.

Actually saying the above might be preferable, but it's unfair to criticize the gesture, I think. If I mention this, it's because I think there are parallels to be drawn with other, more contentious, issues in which people take more serious offense.


It's absolutely fair to criticize the gesture. You know how SJW's tell outsiders to check their privilege when they make the discussion about themselves? Platitudes similarly make the discussion about themselves instead of the cancer patient. "Fight it." Wow, you're so optimistic! "Eat more fruit." You're so knowledgeable! Since you're a certified nutritionist, am I eating enough Quinoa?

http://thelastpsychiatrist.com/2012/12/funeral.html

> (...) The hyena is caught awkwardly, so he rests his paws on the woman's shoulders, and now the sobbing woman must associate her last chance to be with what is left of her father with the stale breath of a sycophant waiting for his moment to be relevant.

> And while that's going on others are whispering to the quivering back of her coat, "oh, I'm so sorry", "I'm sure he really loved you", "are you ok?"

> Why did any one of them think they had the power, the right, to interfere with another person's mourning? This was between her and her father and God and no one else. Did no one notice that even the husband had given her space? Did they just think he was being a jerk? "I just wanted to comfort her." No, you didn't know what else to do, so you did that. "I didn't want her to be alone." That's because you are a terrible person.

I.e. the woman struggled to spend her last moments with her father while the surrounding mourners (each vying for her attention) entered a pissing-contest to prove who had more empathy.


Making the discussion about oneself means its not really a gesture to begin with.

I agree with your example but I think it's a different thing altogether.


What a coincidence. Not only is the gesture supportive, it frames the speaker in a positive light! Just like how startups offer perks like catered lunches because the company cares about work/life balance, right? "How convenient, it just so happens that offering cheap-perks allows us to attract top-talent at half the cost". Notice how the CEO never has to consciously register that s/he's fooling anyone. From inside the mind, it all just looks like a convenient coincidence. Narratives are convenient because they can improve public relations without changing behavior.

Plausible Deniability is why these gestures are socially acceptable. "I'm sorry to hear that" or "that sucks" (i.e. acknowledgment) would suffice. But that's not what Pieter Hintjens' associates told him, is it? Instead, they went the extra mile by offering unwarranted advice. Notice that "I'm sorry to hear that" doesn't connote that the speaker holds relevant information, and is therefore important and worth paying attention to. Regardless of how we define gesture, it is not lost on Hintjens that the stock phrases he receives nudge the conversation in a particular direction.


It's weird that you use the dismissive pejorative 'SJW', then take up their argument yourself.


I think the term has sort of evolved to become less dismissive.


I saw this first hand when my dad was dying. Now I respond to people who tell me about a loved one who is dying with something like "I'm sorry, how's he holding out?" or "I'm sorry. If there is anything I can do to help, let me know." The last one means, essentially, if you need someone to have a beer with so you can release what's been bottled up, I'm here for you.

The first couple of times I received platitudes, it irked me. Later I realized they were just trying to make me feel better and took it for what it was. Not everyone has gone through this, either themselves or with a loved one.


True, but I am usually only telling people because they specifically ask how he is doing.

Of course, if you are referring to here on HN, I only posted it to share in the phenomenon. While I appreciate that many are offering sympathy, I certainly wasn't expecting it here :)


As an immigrant who come to America in my 20's, I never fully understand this. I saw people who asked a person who just experienced extreme difficult situations, "are you ok?". Apparently she was not ok. Her husband just passed away and they had two young children. Nobody would be ok unless she is completely heartless. Other sayings, like "it will be fine", "everything will be ok", etc.


> I saw people who asked a person who just experienced extreme difficult situations, "are you ok?". Apparently she was not ok. Her husband just passed away and they had two young children.

In American culture, this use of "Are you okay?" is not at all literal. It is a polite and well-understood way of opening a dialogue in which the other party can detail the problems stemming from the situation under discussion (implicit from the context of the question) with which they require either emotional support or more concrete assistance, without actually asking for assistance, and without the initiator overtly suggesting that the other party needs assistance in the first place. Its a means of offering support within the context of America's culture of maintaining the illusion of self-reliance. (OTOH, because of that culture of self-reliance, even this elliptical opening is expected to be declined in most cases with, in most cases, an "I'm okay" or, when that is so manifestly not the case as to be ludicrous, "I will be okay".)

The more direct forms which do overtly reference a perceived need for assistance ("Is there anything I can do to help?" or, even moreso, "What can I do to help?") are generally considered less polite and less acceptable, particularly in public and/or from more distant acquaintances.


Thank you very much for the explanation. That clears my confusion.


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?


A big hug, if they're the kind of person who likes hugs and you're close enough to hug. And not hiding your sadness while doing so.

Or "I'm sorry to hear that. Is there anything I can do?"

Or any general statement of empathy. I've been in a similar situation, and those were the best replies.

But everyone is different, so I'd ask a few more people what were good responses. Probably whatever multiple people mention is a good answer.


> Or "I'm sorry to hear that. Is there anything I can do?"

> Or any general statement of empathy. I've been in a similar situation, and those were the best replies.

In a similar vein, "that sucks" seems appropriate.


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How about you think about what you just said for a minute. How is this a situation of "nothing to lose"? You are talking about an extremely sick person who, based on the fact that he has extremely advanced heart disease, probably has a lot of difficulty just being there for his family, and trying to put his affairs in order. Do you think he has the time and capacity to go on an "extreme diet" on the strength of "why not"? And if I publish some book which says that hitting oneself on the head with a pillow 100 times will cure heart disease, should he then try that? After all, what has he got to lose, right?


True. Similar to cancer, most people don't consider the fact that the severe constant pain he is in (his heart is starved for oxygen) and the weakness and exhaustion is a severe hindrance.

That and at this point facing the reality of his own impending death, suddenly concerns for your family become paramount. His one daughter is still living at home (although she is 19 so that won't be a long-term issue).

He's a tough guy though, so he really is trying to do all of the above anyway. I think that is why so many believe he cannot die. If willpower was the only thing that mattered he would live forever.


I'm sure that if you read Dr. Esselstyn research with advanced heart disease patients, you wouldn't be comparing it with hitting yourself in the head with a pillow.

Also, I don't know where you got the impression that it's a radical diet. Many people eat, and enjoy eating this way regularly.


While he didn't follow this specific diet, what he follows is pretty close and I really do think his diet choices are why he has lived as long as he has, at least for his particular situation.

He has been practically obsessive about eating organic and most of it is home-grown (which is where he gets a lot of his exercise as well). Again he has done his research and takes a boatload of quite effective dietary supplements in addition to a good diet.

However, it's not an infinite cure. There is a hard limit to what diet can do.

This advice can be very helpful for someone just starting to have a heart problem, as it can significantly improve and lengthen life.

But he is way beyond that now. Many of those stories are from people who had a particularly poor diet, and turned the situation around by changing the diet. There isn't much he can change at this point, he's always tweaking, and experimenting (he's been at this for 25+ years!) but it's about as close to optimal as he can get.


I don't know anything about your situation, but eating organic is not really what Dr. Esselstyn's diet is about.

Note: If you already know everything below, I am not talking down to you. I'm just writing it in case you haven't heard all of the information before. You can decide if it's valid information or not, I cannot say either way since I'm not a doctor.

The theory behind the diet is that if you eat a plant based diet, your Endothelial cells in your bloodline will activate and start removing plaque.

Here's a video about endothelial cells - https://www.youtube.com/watch?v=KgkEA0-8pFs

You can't eat the following - meat, fish, eggs, dairy, avocados, high fat nuts, or oil of any kind.

Here's a video where Dr. Esselstyn says "No Oil" - https://www.youtube.com/watch?v=b_o4YBQPKtQ

If you eat any meat, fish, eggs, dairy, avocados, high fat nuts, or oil of any kind, your endothelial cells will not reactivate.

The book is #1 on Amazon for Heart Disease, has 1451 Reviews, and is rated 4.6 Stars.

You can also watch "Forks Over Knives". I believe you can view it on Netflix.

Here's a 15min shortened version of "Forks Over Knives" - https://www.youtube.com/watch?v=-roZi4kAp90

I don't think you can be on a diet that is "pretty close" to this diet and still be on this diet. You have to remove all of the banned foods in order for the Endothelial cells to start reversing the damage.

You could also try a Raw Food Diet, but a Raw Food Diet is essentially also a Plant Based Diet.

I'm not a doctor. I have no idea if this actually reverse heart disease or would work for your father-in-law. But it's the only thing I've ever found on the internet that sounds like it might actually reverse heart disease.


I will say thank you for sticking your neck out a bit and sharing; information is powerful and now the choice of what to do with this info is up to the OP rather than probably not hearing about it at all. Of course the most likely response is to ignore it for the father's case but since the condition is genetic I'm certain the poster is reviewing all their options as well.


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.

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...


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Cancer risk is influenced by diet and exercise. You may not believe that it matters, but quite a bit of excellent scientific research disagrees with you.

But you can never lower your risk to zero; there's always a chance. So given enough individuals there are always some with "perfect" lifestyle choices that still get cancer.


I agree 100%. I'd also add that it is possible that considering our biology is constantly evolving, genetic enhancements and defects will play a part in whether or not an individual gets cancer. I assume some mutation played a part in mine since my doctors can't find any obvious causes considering my young age.


> Steve jobs got it and he lived on a vegetarian diet and lived a pretty zen lifestyle at home.

If there's any truth in stories of Job's dietary habits, those can only be described as extreme. Apparently he limited his monthly diet to single fruit or vegetable that he switched for another one at the beginning of every month. He only included variety in when eating outside.


Radio waves and microwaves are harmless. I'm an electrical engineer. There's stories of Soviet soldiers standing in front of microwave transmission dishes to keep warm, and I'm willing to do the same.


>matters not one bit how you eat

may be in the narrow defined "normal" case. As a generic blanket statement - if you read what they put in many types of dog/cat food you will change your mind. Vets we talked to (we lost our cat to lymphoma several years ago) blamed the current high rate (one went as far as saying "epidemics") of internal organ cancers and the cancers like lymphomas among dogs and cats to all that poisonous staff that goes into the dog/cat food.


This is a really important read.

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.

https://www.amazon.com/dp/B00XSSYR50/


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.


It sounds like you might be on the fringe of it, friend. And I don't disagree with you—it is an uncomfortable subject, and for those lucky enough to have it be merely a vague notion of something I'm going to have to deal with "one day", very few people really do know how to respond to it. But I am sorry that your condition gave you such familiarity with the subject at such a young age.


A bit offtopic, but Hintjens has got the coolest activity graph on GitHub: https://github.com/hintjens


Wow, that is really neat. Looks like he does this with his [waka repo](https://github.com/hintjens/waka/blob/master/egg.pl).


Wow, now that is pretty artistic


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.


I am so sorry for your loss.


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.


Personally, I take finding peace and love in your last moments as a way of raging against the dying of the light.


I'd love if you could share, someday, the list of what to do / not to do. Thanks for your writing... And sorry for your loss.


My son fought for almost 5 years (Ages 7-12).

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 agree with all of these sentiments but I would add a few from our own experience (not particularly terminal illness, but that's likely coming soon with my wife's mass in her lung that we still can't get diagnosed) but with the medical machine in general. We have several special and medical needs children so we're constantly dealing with doctors and hospitals.

I think it's important to do your own research on different treatments and therapies. But the reason we do so is not to get our hopes up but to inquire of our doctors about the treatments. We have two questions. "What about _____?" which is usually followed by "why not?" And once in a while we get the response of "I don't know, let me look into that" and end up trying something that they hadn't considered. It helps us knowing that no stone goes unturned and maybe it'll help the doctor even by learning about (always accepted, not alternative) techniques he/she hadn't really looked into yet.

While we generally trust all of our doctors, in two cases we've found physicians that were barely competent by this method. In both cases, they arrogantly attempted to dismiss concerns or questions but when pressed they made up answers simply to dismiss us. (we say "made up" because we were given responses that directly contradict research and even the monograph put out by the drug company. But fortunately, this is the exception and not the rule.

As for alternative cures, the only way (in my opinion) those can be believed is if you put on your tinfoil hat and believe that the medical establishment is evil, every last man. If alternative cures worked, they wouldn't be alternatives. My son is severely autistic. If only I'd spend more time listening to the Internet I could use these alternative cures and he'd end up being a heart surgeon, I'm sure.

I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?


>I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?

Lack of education and a (worrying) growing mistrust in science and the scientific method.


Also a factor is that some illnesses are awful and the treatments are inhumane. They're the best current medicine can do, but it's far from what you'd like the solution or paliative to be.

Thus, turning to alternatives is not necessarily mistrust in science, but a desperate search for something tolerable that could work.

Another possible factor that helps here is that many doctors are as inhumane as the treatments they recommend, and in some cases are not up to date in the latest science, so you end up having to educate them.

Although I agree that the decision to look for something else has to come from the person in the trenches, not as a well meaning (really?) suggestion from an outsider. Some people do want to fight that fight in addition to the normal fights Pieter mentions.


I mostly agree. Just two comments.

[My native language is Spanish, please don't read the "you" here as some direct advice to you, it's a generic "you".]

It's important to get good doctors, there are good doctors and bad doctors, and the default health service doctor may be not be optimal. In most situations it's not possible to get a x10 doctor that will make you live x10 more, but a good doctor will reduce the number of unnecessary and stupid medical procedures and provide better treatment.

[Some people strongly disagree with this.] Read Wikipedia article, all the links, the fist 20 Google results and then a little more. Be aware that the Internet is full of scammers, crackpots, and overhyped press release from universities, so take everything with a (huge) grain of salt. Don't expect to find a magical cure, the idea is to have a minimal understanding of what is happening, understand better what the doctors are saying and what they are not saying, the tradeoffs, the risks, ... Remember that it is not your field of expertize, so don't get too confident. (For example if you are an expert in software, think that it's a hardware problem, so there are many tricks of the trade that you don't know.)


I am not sure you came across The Last Lecture, if not you may find it interesting:

https://www.youtube.com/watch?v=j7zzQpvoYcQ https://www.cmu.edu/randyslecture/book/

I consider myself lucky to have had the opportunity to work with you and learn an awful lot along the way. Thanks!


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.


No - I've heard that if you eat exactly the right things, move in exactly the right ways, think exactly the right thoughts, and carefully control your breathing, you can live forever and never die. You can detect when you're in this state through visual inspection of your excrement, an inner feeling of subtle warmth radiating from the stomach or chest, a clearness of mind, and a feeling of being a conduit through which the natural order of the earth and its life flows.

This must be true, because a version of this has been told to me by 4 out of 5 people that I've ever met.


There used to be a comedian (can't remember who) who joked "All those people who ate right, exercised, and got plenty of sleep are gonna be awful embarrassed when they die of nothing."

People believe this kind of stuff on an emotional level because they can't face their own mortality. I have a theory this is why we're so interested in how other people die. It's so we can disconnect other people's deaths with our own - "I don't have to worry about dying that way because I eat plenty of vegetables/don't smoke/don't drink/don't associate with violent people and therefore I don't have to think about dying."


> 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.


> Some of them work and work very well.

Bull. People get better randomly, but pattern matching makes this really hard to accept. After all, you best get your lucky hat before the big game just like 100,000 other people.

As to caner, day one they are going to tell you your odds of survival long term and they are never 100%. https://xkcd.com/931/


>> Some of them work and work very well. > Bull. People get better randomly

I completely agree. I also know that some treatments work for some people.

> but pattern matching makes this really hard to accept.

I'm stating that a patient needs to find what works for them. Sometimes that's surgery, chemo, radiation, all of the above or no treatment at all.

I've known friends & family members improve, or not, on some/all of the above. The point is that everyone is different. People react differently to identical treatments. That's why some people develop diseases and others don't in the first place.

> As to caner, day one they are going to tell you your odds of survival long term and they are never 100%.

The only thing 100% is NOT surviving. How you come to your end is your choice. Some people chose to do that on their own terms, with their own treatments that may provide better quality, and/or quantity, of life. You don't have to make that choice, but you can't tell someone else not to.


Flip a coin H/T. Call it H ends up T. We really want to say T was a better choice. But, before the flip they are identical options.

Do chemo* and die in 2 months. That may seem like a bad choice. However, you don't know the outcome and can only guess at the odds.

Saying ahead of time you don't think the odds are worth it is one choice. But, you can't look at the outcome and then say the choice was wrong it must be in the context of uncertainty.

As to alternatives that's doing nothing while playing make believe. But hey, some times doing nothing works.

*Chemo, retro virus, wonder drug, or something with actual odds of working.


> 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.

[1]: http://phdcomics.com/comics.php?f=1162


> [1]: http://phdcomics.com/comics.php?f=1162

So, forgive me if I'm being naive because I don't really have professional experience in the field of cancer research, but this comic makes it sound like a cure for cancer is impossible because it would have to deal with million different forms and shapes that it can take, but, theoretically, wouldn't it be possible to attack the root problem instead, and find a way to biologically enhance our dna replication "algorithm" to prevent mutations in the first place? Surely it's better to prevent the mutations in the first place than find a cure for them, since then it's a single problem.


I'm nowhere close to having much knowledge about cancer either, so anything I say is as a lay person. This comic made sense when considering how many cancers are "treated" and what people go through when they have cancer and undergo treatment. Of course, not all types (or targets) of cancers are the same, and we do have better outcomes for some and possibly no hope for others. I've also read in the past that with our current technology, we can detect cancers only when they become significantly big, by which time it's usually kind of serious for the person.

The root cause solution is very likely going to be through some sort of genetic engineering (which is again quite complex). Preventing (bad) mutations requires (in my ignorant opinion) observation over a longer period of time after we find that there's a mutation. This would also need a lot of study and knowledge to be collected across races, genders, ages, etc. In summary, I think we have very less knowledge/information and need a lot more information, time and effort to get to solutions that would work for any human on the planet.


Curing it with traditional chemical medicine is impossible, sure.

I think you're right in that the best place to look for a cure is the root cause. If we could modify our genetics to prevent unregulated growth, or train/augment our immune systems to better recognize cancer cells, then our bodies would be capable of preventing it all on their own since as I understand it, most types of cancer are essentially caused by your immune system failing to recognize malignant growths.

There's also researchers [1] looking into the viability of utilizing nanorobotics to fight cancer (among other diseases that are incurable or require invasive surgery) - essentially you'd inject millions of nanobots into your bloodstream, which would circulate through your body, killing any cells which grow unregulated, and then exit through your urine when you're all clear.

[1] http://www.nextbigfuture.com./2015/05/pfizer-partnering-with...


Chemistry is pretty fudgy, dirty, hazy; and your dna doesnt have ECC.


There is already a method that prevents such mutations: old age.


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.

1. http://www.apa.org/monitor/jan08/cancer.aspx


I think the above comment accidentally omits 'not'.

This whole story is very moving.


What's really sad is that the state of progress in cancer treatment is extremely slow. Randy Pausch, for example, was diagnosed with pancreatic cancer about 10 years ago.

https://www.youtube.com/watch?v=ji5_MqicxSo

There are people receiving the exact same death sentence today, with the same likely outcomes.

Anyway, there's a book and a PBS series for anyone interested in learning the more about the current state of cancer research:

http://www.pbs.org/show/story-cancer-emperor-all-maladies/


> What's really sad is that the state of progress in cancer treatment is extremely slow.

This is massively false. There are great strides made for numerous cancers, while for some others (pancreatic, colorectal being among the worst) there are still not many good options. For pancreatic cancer the main issue is that it's very hard to detect in early stages and when you get the symptoms you are basically already in stage IV. Pretty much the same story for brain tumors (like GBM, usually detected very late).

We also know a lot more about how to prevent many types of cancer. If you want to reduce significantly the odds of stomach cancer, you basically need to really restrict your alcohol consumption. Even for many cancers alcohol consumption shows up as correlated with increased risks.

So, treatments are improving, prevention is improving, but of course there are still cancers with very poor outcomes. At the same time, it's a major field of investment so many companies are trying to make odds better every day.


If early detection can make a big difference, then clearly that is the low hanging fruit of cancer research.


This would require a test that is (a) cheap (so that it can be applied to basically everyone) and (b) has extremely low false positive ratio (because a particular kind of cancer is a rare thing). Repeat for every different kind of cancer.

For these reasons I'm not sure that it'll end up being a lower hanging fruit than vastly better treatment of late detected cancer for the kinds that are usually detected very late now.


It's not that they are not trying. There are numerous studies looking for bio-markers to detect the presence of cancer, but from what I remember, it does not yield good results.


Strange, from what I read (including interviews with oncologists) cancer treatment is massively improving, with new treatments available and many fundamental advances in the pipeline. The future is looking bright, with cancer becoming a manageable chronic illness in the next decades.


An oncologist gave a friend of mine the ridiculous opinion that there would be a cure for cancer within 5 years. That was 6 years ago.

I say ridiculous because medicine is awash with similar predictions, the vast majority of which have never come true, or materialise far far later than anticipated.

The future does indeed look bright... from the very specific perspective of the researchers. Unfortunately if you are someone actually living with lung cancer or pancreatic cancer, for example, that bright future suddenly looks a lot murkier.

Fortunately my friend remains in remission, while I remain flabbergasted at the irresponsibility of that oncologist.


"Cure for cancer" or "cure for that particular cancer"? First one sounds bizarre (cancer is a set of diseases that are generally similar, but very different in specifics), second is essentially already true for some kinds of cancer (e.g. testicular cancer in males).


You're giving me anecdotal information that spans over 20-30 years? Yeah, I'm optimistic that by 2050, we'll be much better off. In the meantime, 7-10 million worldwide will die every year from cancer. We're racing to get self-driving cars to save a lot fewer people.


Its more than anecdotal information. In the last few years 11 new treatments have been approved for stage III and IV cancers that are immune-mediated, which includes melanoma, one of the fastest growing (in terms of incidence) as well as most aggressive cancers.

But the real truth is that cancer isn't a single disease. Treatments move slowly because its a host of different diseases which all exhibit the same symptoms of unrestrained growth and cellular immortality. So yeah, a lot of people are going to die of a lot of different diseases. "Curing cancer" isn't going to happen, because "cancer" isn't one single (or even a few) things to cure.


'cancer isn't a single disease ". That's covered in the video, and it well-known by everyone? The immunotherapy drugs are in the video too. There were certainly a few successes but it sounds like we have a bit of work. It's one of the cancer moonshot projects:

http://www.cancermoonshot2020.org

Do you have to survival rates for the various cancers. That's the benchmark, right?


I don't know if I think survival rates are the best metric for judging progress here. The ones I'm most familiar with are melanoma's, but those are also a factor of many things besides treatment options. The only thing I can think of that its a good metric for is 'people not dying'.

I also don't know if 'cancer isn't a single disease' IS well known by everyone. In this crowd perhaps, but certainly not the population at-large.


> I'm optimistic that by 2050, we'll be much better off. In the meantime, 7-10 million worldwide will die every year from cancer

That's sort of how progress and improvements work, they benefit those that come later.

> We're racing to get self-driving cars to save a lot fewer people

And those people working on cars are probably don't have the skills or drive to deal with medical research. That not everyone on the planet is working on what you believe they should be means nothing.


No one said people should switch jobs. You are filling in the wrong blanks. Thinking outside the box doesn't come easy for you?


And what other meaning does "We're racing to get self-driving cars to save a lot fewer people" have in this context?


Many people are excited that self-driving cars could potentially save a million lives a year, which will be an incredible achievement.

We need that sort of excitement and effort for cancer research. Eventually 40% of Americans will get cancer, for example:

http://www.cancer.gov/about-cancer/understanding/statistics


Cancer is a disease where we are making progress, but not fast enough. The immune-based approaches of the last few years are real progress, but cancers like pancreatic cancer are very hard to fight.


Pancreatic cancer is "hard to fight" because it is seldom detected early, but at a very late stage.

I heard Craig Venter once say that the cure for cancer is early detection. Wish I could find the video.


(a bit tangential, not directly related to the special case of pancreatic cancer, maybe in this case early detection provides better results)

Early detection is double-edged sword: It is very hard to tell in early stages if the cancer develops into harmful variants and a small false positive error can have drastic consequences, if applied on scale [1]. The result is that many undergo unnecessary therapy with 100% harmful consequences (not life threatening, but permanent damage like removed organs/sterility).

See also: "The Case Against Early Cancer Detection"

http://fivethirtyeight.com/features/the-case-against-early-c...

I'd put my money (research) rather on better treatment than earlier detection.

[1] https://www.youtube.com/watch?v=M8xlOm2wPAA


It sounds like we need better non-invasive early detection. Tests where you can monitor the progress. Simply saying "we've got some early tests that aren't very helpful" doesn't mean we shouldn't be improving the tests.

Also, i'm not sure why we can't have both: better early detection and better treatments.


Pathways genomics is actually in clinical trials for blood tests to detect very very early masses that won't show up on scans.

One of the vps from Google's moonshot division,Jeff Huber, just left to head up a company that is a spinout of illumina, called Grail

No affiliation, but they have a bunch of interesting software jobs open after looking at thier site

http://newton.newtonsoftware.com/career/CareerHome.action?cl...


That's not really true for pancreatic cancer. It is absolutely notorious for escaping even when it's detected early, and even after a (seemingly) complete resection. This was in fact Randy Pausch's case: he had a resection with negative margin (meaning no cancer detectable on the surfaces from which the tumor was cut) and negative lymph nodes. For most cancers, his chances of survival would have been excellent, but not for pancreatic cancer. I remember at the time he wrote that it was a 50:50 proposition, but it's actually a lot worse. We don't know why this happens - it probably has to do with early metastasis by very small clumps of cells, or even individual cells.

This is one reason nobody recommends widespread screening for pancreatic cancer - apart from the inevitable false positives and so on. We currently don't have anything very wonderful to offer even to people in whom it was detected early, although it does improve the chances somewhat.


Yes you are 100% right (edited my post).


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.


If you haven't heard it already, there is a really good and candid podcast interview with Pieter Hintjens over at Software Engineering Daily: http://softwareengineeringdaily.com/2016/06/23/death-distrib...


Related: A Protocol for Dying, an interview with him for The Changelog from June 2016.

https://changelog.com/205/


Also, his previous couple of articles on the same topic:

* 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


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.


Interestingly for people with colds the sympathy is also commonly misplaced, at least mistimed, namely the outer symptoms often only show up after the worst parts (sore throat, dizziness, nausea, headaches) are already overcome.


Almost like the old saying "out of sight, out of mind".

Personally, I was going through some rough stress at work. Minute someone comes down with a cold, they got "oh god you don't look well at all. Have you spoke to the boss?". 5 minutes later I would get "so why isn't x done yet?" by the same person despite it being a known fact I'd been holding the weight of a two man team on my own for 18 months!

That made me feel even worse but once I got a handle on things (and an extra pair of hands), I noticed the interesting pattern in general.


" There are people who treat the dying as easy prey. " For some reason this hurt most. Maybe I expected way too much humanity off humans.


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).


Very sensible read, just one question, he mentioned "avoid junk foods, especially sugar", is sugar that bad for causing cancer?


I hear this coming from a multitude of sources too. If true, is simple sugar metabolism oncogenic? What is the mechanism?


I'm aware of no evidence that sugar, as such, causes cancer directly. However excessive use (which means 'normal' consumption in our society) definitely damages your immune system and other systems. This cannot be helpful when fighting any disease.


I dunno about causes, but it is known that, unlike our bodies and brains which can run on glucose or ketones, that cancer can only run on glucose. Some of the more-promising research specifically relates to starving cancer cells of fuel. Your body can still make glucose fuel out of all kinds of stuff, including protein, though.

https://en.wikipedia.org/wiki/Metformin is a type 2 diabetes drug that, through usage, has appeared to yield cancer-suppressing benefits. Studies underway, and some notable scientists are beginning to take it prophylatically.


> but it is known that, unlike our bodies and brains which can run on glucose or ketones, that cancer can only run on glucose

That's the short version. The more differentiated view is that:

- this is found to be the case "for many perhaps most" --- not all cancer/tumors

- in a glucose-starved context, "many perhaps most" cancers/tumors seem to be able to switch to glutamine or IIRC even other amino acids

- once it's "there": zero blood glucose is impossible to achieve and would be deadly, if blood glucose is mostly scavenged by the tumor(s) it stands to reason that the liver will happily waste away lean tissue over time to provide the strictly necessary blood glucose levels (there are a very few other healthy cells that also can "run" only on glucose and not metabolize fat or ketones or lactate etc, such as red blood cells, around half (or less) of the brain, and all cells that lack mitochondria)

Most cancers/tumors seem to show both: myriads of genetic mutations and severely disrupted/dysfunctional/degenerate mitochondria. The latter necessitates "anaerobic glycolysis even in the presence of oxygen", aka the Warburg effect. The debate is still ongoing which of these 2 characteristics really came first and perhaps caused the second, with mainstream largely siding with the DNA-mutations-first perspective. Anaerobic glycolysis is fermentation of glucose (or easily convertible alternatives such as glutamine) instead of oxidation of glucose (or other sources of kcal) --- abnormal for cells with functioning/healthy mitochondria except perhaps in brief anaerobic-emergency moments, and sometimes viewed as the original "ancient, pre-oxygen cellular energy generation" modus operandi.


There is no direct link, but sugar certainly does not help to prevent cancer. Too many calories is a real, world wide problem by now:

https://en.wikipedia.org/wiki/Epidemiology_of_obesity



Watch 'Hungry for Change' on Netflix.


I lost both my parents last year to cancer. Both were Christians, and so am I.

I know many people find Christianity and the subject of faith to be uncomfortable, even offensive. But that's because the Christian message _is_ offensive. It makes claims that exclude all other options, that evil is real and that we are responsible for it. To me, either the message is true or it isn't. There is no grey. Either Jesus Christ was a liar, a lunatic, a legend, or He is Lord God Almight.

Penn Jillette, the famous atheist and half of Penn and Teller had it right, that if we removed all the scientific research in the world we would be able to rebuild it all, but religions would be all different. I agree with him, and so does the Bible. It says that God reached down to us, delivered messages in ways that statistically rule out purely human effort, and gave us a choice to trust Him or not (have a look at http://thebibleproject.com) . In the end, everyone's going to get what they want (if you want Jesus Christ you get him, if you don't you won't). That's why for my Dad and I, we both had to be convinced that the Bible was not simply human in origin.

Whatever your view, I can only speak to my own experience. The loss of my mom September 1st, 2015 to double-hit lymphoma was very, very painful (she was 68). But in the midst of the pain was a hope and peace as explained in Philippians 4:4-9 (http://bit.ly/phil4_4-9). Then, unexpectedly 120 days later, my dad died from lung cancer (age 72), leaving my brothers and sisters and I with a property and 47 years of marriage and memories for us to sort through and deal with.

We are all going to die. The question is not if but when. To put off the discussion about what happens after you die is to deny reality itself, and telling others not to have that discussion or that their position is stupid or foolish is really dumb. Oh, and in case you think the Christian message is foolish, the Bible agrees with you that it is http://bit.ly/1cor1_18-25


In addition to unwarranted positivity, unwanted diet advice, and alternative medicine suggestions, I'd add one more to his list of "creatures skulking about": unwanted religious messages. As a non-Christian, if I were dying of cancer I'd really want to not spend my remaining time hearing about stuff like this. If it works for you, great, but to others who aren't sold on it, it comes off as univited at best and rude or offensive at worst.


I'm sorry you lost both your parents in a short period. That is hard.

Presenting a religious message like this is off-topic on HN, though, and bound to get people's backs up.


It is relevant to the original post. I know it was risky to share, but being able to make sense of life and death is something we will all face.

I used to be a nihilist. I kept asking the same two-word question: then what? Take every hope and dream you have right now, and ask yourself "once I achieve this, then what?"

I have the answers I was seeking, and it actually isn't religion. It is relationship. Religion is actually just "to visit orphans and widows in their affliction, and to keep oneself unstained from the world."

Besides, I'm used to getting people's backs up. Vim is the greatest text editor ever :)


You're really in the wrong place if you think this is going to go down well. You might want to give the guy some respect and not espouse religious views here.


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.


Not all of us want to live again in some unknown future without any sense of continuity or surviving relationships. Death is ultimately inevitable, even if a miracle like cryonics could postpone it the first time. The author's entire point is that we should accept this inevitability, not try to avoid it by any psychological means we can conjure. Only then can we respond appropriately.


>Death is ultimately inevitable

What makes you say this? There is no fundamental aspect of physics that makes death inevitable except perhaps on the very very very long term (heat-death timescales).

Understanding and controlling every aspect of human biology is an engineering challenge. It's obviously extremely difficult, but we have no reason to suspect it's intractable.


If we manage to make cryonics work what tells you that people you know will not do it in the future or technology didn't make them live much (much) longer than expected? Why accept something as fact when there is an above zero chance that you can live longer?


When I was about 16, I read Larry Niven's _A World Out of Time_. It left me with very mixed feelings about the matter. Unfortunately all the times I had the means to sign up for such, I didn't have the desire to.

Tell me, what would you do if your spouse had no interest in cryonics but you did? It complicates the decision a lot.


For me it doesn't at all. As long as you wouldn't commit suicide if your spouse died, it is a clear yes.


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.

https://www.amazon.com/Tibetan-Book-Living-Dying-Internation...


I have the utmost respect for Pieter, wherever I encounter his work it always shows passion and quality. Recently I read The Psychopath Code which I highly recommend especially to those who think they've never encountered one. While you can still read this: thank you. You have improved my life in multiple ways.


"..Yet you are only as strong as the work you do"

All the article is very inspirational, mundane things like not solved paperwork, can carry lots of head aches to the family, sadly I know it by experience.


Yes, all deaths are tragic, but increasingly feel that humanity does not have a good measure for priortizing its efforts.

As an example, over half of those diagnosed with cancer are over 70 years old and 100s of billions have been spent on research.

What is an object way to decide if all the effort spent of cancer research is of value relative to other area of research where progress might be made?


I want to say this story is personal for me.


Some of this advice applies to people with chronic non-terminal health problems as well. We may not be dying, but the "helpful advice" from people who hear we have problems usually doesn't go over very well with us, even if we do smile and say thanks, to be polite.


Unfortunately, despite what this article says, there is a choice between fighting cancer or not: The best way to give up is stopping to eat (which probably isn't that hard if things like chemotherapy and severe illness pretty much remove any feelings of hunger).


Oh there are lots of ways to give up. I could refuse palliative chemotherapy, stop eating, overdose on opiates, drink a large glass of scotch together with my drugs, and so on. Yet when people say "you must fight" they don't generally mean, "take your meds and eat two full meals a day, and try to feel positive!"


I've been appreciating Pieter's posts, and his occasional comments on HN (I noticed one a few days back, on technical topics). I'm also increasingly apprehensive opening them. Though the only fatal disease I'm aware of fighting right now is life, my hope is to pursue my interests so long as I can.

I wasn't aware of Pieter before his recent blog topic started appearing on HN, though I'm pretty sure I'd come across his work. We're focused on different areas of tech.

I have seen cancer though, and much of what he writes here hits home, hard. I lost a very good friend, far too young, several decades ago. I'm looking at their picture now.

And remember going through much of what Pieter describes, though not as the central participant.

There were the other patients we met through treatment. Some of whom made it, some of whom didn't. And it wasn't necessarily those who appeared strong who lived.

There was the cheerleading and denial and people who were meddlesome. Those of us around the patient and family did what we could to steer the away. As Pieter says: the doctors tend to know the medicine pretty well (though chasing after them when things clearly aren't going right may be necessary). Unsolicited medical advice at this stage is almost always quite unwelcomed.

Small things can be huge.

What I remember, most, still: meals that showed up on the back porch with heating instructions. The neighbors had arranged amongst themselves a cooking schedule and coordinate this. No asking. No fuss. It just happened.

One less thing to worry about.

The other thing I remember was someone who, in all sincerity and good intentions, had forwarded information on a possible meracle cure. Laetrile. "The slickest, most sophisticated, and certainly the most remunerative cancer quack promotion in medical history," Wikipedia tells me today. We didn't have Wikipedia then, but I quickly established that this was in fact bunk.

It still makes me furiously mad: preying on sick people and those about the clinging desperately to any possible hope, in full knowledge that you're peddling bullshit. And those who get swept up in this and pass on the misinformation. Maybe that's why I've cracked down on online disinformation as well. It's not just duty calling....

https://en.m.wikipedia.org/wiki/Amygdalin

Pieter's comments on how cancer is "fought" are also extremely good counsel. Some things can be manipulated and addressed directly. For others, you can only hope to set up the right set of circumstances to achieve the outcome you desire -- fighting cancer is more like tuning algorithms or seeds for some stochastic process -- a raytrace render or algorithmic music render, say, for those familiar with them -- than aiming a rifle at a target and taking shots. Our ability to directly influence events is limited, mostly you're managing the bits about you, your environment. Staying comfortable, staying sane. So much as possible.

In describing dealign with those around him. Pieter reminds me of a general classification I've used in other contexts for people:

* There are those who mean to do well, but are unable to. The cheerleaders and advice givers tend to fall into this category -- their harm isn't intentional, but it can be real all the same.

* There are those who cause problems through their own systemic operation. Healthcare insurance systems, vendors, legal processes, and the like. The issue's less one of having malicious intent, though here it's a lack of sensitivity to what their impacts on others are, or simply failing to care. The impacts on those who are sick or disabled are hugely magnified.

* Finally, there are those who are actively evil. Scammers, predators, sometimes even family or neighbors angling for what they hope they might be able to gain. This again makes me sick. There are no pits of hell deep or hot enough.

Many years after the experience I'd mentioned above (and after several others), I found a good model for offering care -- it's the concept of a kvetching order:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-s...

This consists of a set of concentric rings around a trauma, with the afflicted person at the center, and a growing set of less-affected care- and support-givers extending out. The basic idea is that care flows in, kvetches flow out:

The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

Those who cannot (or will not) grasp and follow the concept are excluded.

The article also has another really wonderful piece of advice: that sometimes simply listening is the support that's needed. I've been on both the giving and receiving sides of that, and I'm not aware of when it's not been appreciated (though as with other advice -- people may differ, be sensitive to their needs).

One more thought: at least in Western cultures, there's often a profound lack of awareness of how to deal with death, impending death, or recent death. That's something which could use improving (and no, I'm not suggesting a YC opportunity). I very much appreciate Pieter's occasional communications for helping with that, at least here.


> It still makes me furiously mad: preying on sick people and those about the clinging desperately to any possible hope, in full knowledge that you're peddling bullshit. And those who get swept up in this and pass on the misinformation. Maybe that's why I've cracked down on online disinformation as well. It's not just duty calling...

Single thing that flips me off on social media is seeing my friends pollute my wall with memes claiming things like "cannabis cures 7 out of 10 cancer occurences, vote legalize!" or "vitamin b17 is scientifically proven to cure cancer, FDA & Big Pharma made sure those scientists are gone."

Most of time I let it slip, but sometimes I politely try debunk the meme in the comments, hoping that at least some fellow readers would follow on my arguments and use it to widen their knowledge.


First, for the general Reader: Outside of really breast/ovarian cancer, getting most common cancers at a young age is fairly within your control. http://www.nytimes.com/2016/07/06/upshot/helpless-to-prevent...

Pieter doesn't have a common cancer and he's way beyond that stage within stage IV cancer. In general it's really rude to say "fight more" because he's right, what do you think these patients are doing instead, joining the circus? Fighting isn't a great metaphor. The reason it got introduced was so that Reagan would create the National Cancer Institute, a Division of the NIH. A full page ad was taken out by Mary Lasker and the American Cancer Society to convince him that researching the causes and cures for cancer was a US healthcare priority (and to be frank, at the time, it essentially was) asking him to declare war on cancer in the NY times because the US was in the middle of the cold war. The other thing that the add did (along with the creation of the Jimmy Fund) was it normalized discussions of cancer in the US at that time. To explain how much of a big deal that ad was, my maternal grandmother died around 1973-1974 of cancer. The ad came out in 1969. My maternal grandfather is only now settling the argument if it was metastasis of her internal breast cancer from when she was younger, new breast cancer that spread to the bones, or a totally new bone cancer, because now we talk about cancer, whereas in 1969 -73 talking about cancer was difficult if not possible.

----

Aa a personal note to Pieter, if he sees this: 1) I'm extraordinarily happy you are doing as well as you are in your end of days and I hope you are enjoying them to your fullest. i hope, for whatever it's worth, you are still experiencing moments of joy too. 2)im slightly concerned as an American about your distrust of marijuna at this stage, especially since it seems like low pain and enjoying food is a high priority for you. In the US, marijuna is partially approved (don't ask) for cancer patients as an appetite stimulant and pain suppressor, and many of the chemicals in it are made synthetically and prescribed to cancer patients for the same purpose. Meanwhile, many opiates are appetite suppressants (that's the other reason behind the Medrol). Since you deserve to enjoy your time and have as many thalis as you want, just think about it. (Again, I'll totally admit that this is a bias of seeing Americans treated) 3)do you need help getting the paperwork done. On a percentage scale, how much is left? How much can be done by volunteers/family/friends? (And I hate asking this, how much is in English, because I'm happy to volunteer, but I'm an English speaker...) 4)thalis. Mmmm. Thalis.


I've no specific distrust of marijuana as a pain killer and appetite booster during chemo. If oil/butter was readily available I'd be using it rather than opiates. I'm not going to smoke marijuana because it's hard enough to breathe already (the metastasis is filling my lungs up). Yet I'd have to get it illegally here. While Belgium is ahead in some areas, it lags in others.

Paperwork... is just work. I've a complex situation, made worse by some, let's say, recalcitrant spirits. No pity for the dying, in some quarters. The summer months in Belgium are dead, which makes it harder to reach the necessary people. I do appreciate the offer of help though :-)


Are the derivatives in pill form legal? Are there any provisions to allow the dying in belgium (would your doctor or someone here on HackerNews know?)

You deserve to enjoy the time you have

And the summer months appear to be dead throughout the west. eh. It seems to be a thing


Quitting Twitter. Not quitting Twitter.

Dying. Not dying.

Sustrik is God. Sustrik is Satan.

What's up with this guy.

</nasty-joke-from-big-hintjens-fan>


Cancer is a horrible disease that I would not wish on anyone, but getting cancer is not a judgement. It won't make you a saint. Nor the reverse. The inevitably flawed person is going to be is much the same as they were before the diagnosis.


[flagged]


> This guy is a sheep

Personal attacks are not allowed on HN at the best of times, let alone under circumstances like this. This is a bannable offense, so please don't do it again.


[flagged]


You can flag (and you can downvote) the obvious trolls.


Done, thanks (initially couldn't see the flag link).




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