13 ms·

Fighting Cancer

497 points by egorst 10y ago

danieltillett 10y ago
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 http://www.apa.org/monitor/jan08/cancer.aspx
- jimmytidey 10y ago
  I think the above comment accidentally omits 'not'. This whole story is very moving.
  - danieltillett 10y ago
    Yes you are 100% right (edited my post).
    - deleted 10y ago
      [deleted]
  - melling 10y ago
    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 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/ http://www.pbs.org/show/story-cancer-emperor-all-maladies/
    - Luc 10y ago
      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.
      - melling 10y ago
        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.
        karmajunkie 10y ago
        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.
        melling 10y ago
        '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 http://www.cancermoonshot2020.org Do you have to survival rates for the various cancers. That's the benchmark, right?
        karmajunkie 10y ago
        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.
    - danieltillett 10y ago
      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.
      - melling 10y ago
        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.
        okket 10y ago
        (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-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 https://www.youtube.com/watch?v=M8xlOm2wPAA
        melling 10y ago
        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.
        shanacarp 10y ago
        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?clientId=8a788267534a42fe0153622849ce068d http://newton.newtonsoftware.com/career/CareerHome.action?cl...
    - ekianjo 10y ago
      > 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.
      - intrasight 10y ago
        If early detection can make a big difference, then clearly that is the low hanging fruit of cancer research.
        robryk 10y ago
        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.
        ekianjo 10y ago
        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.
listentojohan 10y ago
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.
jwdunne 10y ago
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.
- hacker42 10y ago
  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.
  - jwdunne 10y ago
    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.
csl 10y ago
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-distributed-systems-pieter-hintjens/ http://softwareengineeringdaily.com/2016/06/23/death-distrib...
nixarn 10y ago
A bit offtopic, but Hintjens has got the coolest activity graph on GitHub: https://github.com/hintjens https://github.com/hintjens
- rralian 10y ago
  Wow, that is really neat. Looks like he does this with his [waka repo](https://github.com/hintjens/waka/blob/master/egg.pl https://github.com/hintjens/waka/blob/master/egg.pl).
- kevindeasis 10y ago
  Wow, now that is pretty artistic
karmajunkie 10y ago
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.
- 6stringmerc 10y ago
  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.
  - karmajunkie 10y ago
    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.
- sib 10y ago
  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/ https://www.amazon.com/dp/B00XSSYR50/
pixelmonkey 10y ago
Related: A Protocol for Dying, an interview with him for The Changelog from June 2016. https://changelog.com/205/ https://changelog.com/205/
- r3bl 10y ago
  Also, his previous couple of articles on the same topic: * A Protocol for Dying: http://hintjens.com/blog:115 http://hintjens.com/blog:115 * Planned Death: http://hintjens.com/blog:116 http://hintjens.com/blog:116 * Living, in Limbo: http://hintjens.com/blog:121 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 https://www.gitbook.com/book/hintjens/culture-empire/details
dredmorbius 10y ago
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 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-silk-ring-theory-20130407 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.
ciconia 10y ago
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.
- DougN7 10y ago
  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.
  - FungalRaincloud 10y ago
    Personally, I take finding peace and love in your last moments as a way of raging against the dying of the light.
- incanus77 10y ago
  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.
newscracker 10y ago
> 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 http://phdcomics.com/comics.php?f=1162
- Mahn 10y ago
  > [1]: http://phdcomics.com/comics.php?f=1162 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.
  - disease 10y ago
    There is already a method that prevents such mutations: old age.
  - hughperkins 10y ago
    Chemistry is pretty fudgy, dirty, hazy; and your dna doesnt have ECC.
  - wyqydsyq 10y ago
    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-ido-bachelet-on.html http://www.nextbigfuture.com./2015/05/pfizer-partnering-with...
jMyles 10y ago
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.
- PieterH 10y ago
  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.
  - ChristopherE 10y ago
    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?
Practicality 10y ago
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.
- mkriss 10y ago
  Plant based diet is possible solution. [1] Watch documentary "Forks over knives" [1]. http://www.dresselstyn.com/resolving_cade.htm http://www.dresselstyn.com/resolving_cade.htm
- protomyth 10y ago
  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.
- beachstartup 10y ago
  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.
kohanz 10y ago
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.
idlewords 10y ago
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/ 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.
arisAlexis 10y ago
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.
- rabidrat 10y ago
  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.
  - wyager 10y ago
    >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.
  - arisAlexis 10y ago
    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?
    - deleted 10y ago
      [deleted]
- mmagin 10y ago
  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.
codingdave 10y ago
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.
reactor 10y ago
Very sensible read, just one question, he mentioned "avoid junk foods, especially sugar", is sugar that bad for causing cancer?
- echelon 10y ago
  I hear this coming from a multitude of sources too. If true, is simple sugar metabolism oncogenic? What is the mechanism?
  - PieterH 10y ago
    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.
- okket 10y ago
  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 https://en.wikipedia.org/wiki/Epidemiology_of_obesity
- astrostl 10y ago
  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 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.
  - dualogy 10y ago
    > 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.
nxzero 10y ago
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?
alfonsodev 10y ago
"..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.
univalent 10y ago
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.
_nullandnull_ 10y ago
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-International/dp/0062508342 https://www.amazon.com/Tibetan-Book-Living-Dying-Internation...
darod 10y ago
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--battling-cancer http://www.cc.com/video-clips/8kgu68/stand-up-norm-macdonald...
- X86BSD 10y ago
  THIS. First I am very sorry to hear about your condition. I sincerely wish you all the best in dealing with the scourge of cancer. Second, I can't backup your statement enough. Cancer is not related to diet or exercise, not one bit. Steve jobs got it and he lived on a vegetarian diet and lived a pretty zen lifestyle at home. Not a human, but my dog who was an inside dog rarely went out except to do her business, and got skin cancer a few months ago. This totally blew my mind because I thought you only got that from over exposure to UV. When the vet told me it was probably genetic I was really schooled at that moment. With all the radio waves, and microwaves blasting us 24x7, toxins in our food and water, it honest to god, matters not one bit how you eat or what lifestyle you choose to follow, cancer can get anyone at any time for any reason. I do not believe diet or healthy lifestyle make any difference on wether you get a cancer or not. If it does make a difference I believe it is negligible. P.S. FU$% Cancer!
  - teach 10y ago
    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.
baldfat 10y ago
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.
Kenji 10y ago
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).
- PieterH 10y ago
  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!"
milesf 10y ago
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 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 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 http://bit.ly/1cor1_18-25
- petewailes 10y ago
  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.
  - deleted 10y ago
    [deleted]
- 10y ago
shanacarp 10y ago
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-cancer-actually-a-lot-is-in-your-control.html 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.
FuNe 10y ago
" 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.
- Mahn 10y ago
  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).
newuser1111 10y ago
I want to say this story is personal for me.
olantonan 10y ago
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>
- SideburnsOfDoom 10y ago
  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.
raarts 10y ago
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.
frign 10y ago
This guy is a sheep of the medical system and has already given up just because his treatment stopped working as the doctors told him. Our society and food make us sick, our doctors keep us sick. Why trust them with cancer?
- voltagex_ 10y ago
  .
  - DanBC 10y ago
    You can flag (and you can downvote) the obvious trolls.
    - voltagex_ 10y ago
      Done, thanks (initially couldn't see the flag link).
- dang 10y ago
  > 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.

497 points by egorst 10y ago

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

jimmytidey 10y ago
I think the above comment accidentally omits 'not'. This whole story is very moving.
- danieltillett 10y ago
  Yes you are 100% right (edited my post).
  - deleted 10y ago
    [deleted]
- melling 10y ago
  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 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/ http://www.pbs.org/show/story-cancer-emperor-all-maladies/
  - Luc 10y ago
    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.
    - melling 10y ago
      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.
      - karmajunkie 10y ago
        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.
        melling 10y ago
        '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 http://www.cancermoonshot2020.org Do you have to survival rates for the various cancers. That's the benchmark, right?
        karmajunkie 10y ago
        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.
  - danieltillett 10y ago
    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.
    - melling 10y ago
      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.
      - okket 10y ago
        (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-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 https://www.youtube.com/watch?v=M8xlOm2wPAA
        melling 10y ago
        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.
        shanacarp 10y ago
        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?clientId=8a788267534a42fe0153622849ce068d http://newton.newtonsoftware.com/career/CareerHome.action?cl...
  - ekianjo 10y ago
    > 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.
    - intrasight 10y ago
      If early detection can make a big difference, then clearly that is the low hanging fruit of cancer research.
      - robryk 10y ago
        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.
      - ekianjo 10y ago
        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.

listentojohan 10y ago

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.

jwdunne 10y ago

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.

hacker42 10y ago
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.
- jwdunne 10y ago
  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.

csl 10y ago

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-distributed-systems-pieter-hintjens/ http://softwareengineeringdaily.com/2016/06/23/death-distrib...

nixarn 10y ago

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

rralian 10y ago
Wow, that is really neat. Looks like he does this with his [waka repo](https://github.com/hintjens/waka/blob/master/egg.pl https://github.com/hintjens/waka/blob/master/egg.pl).
kevindeasis 10y ago
Wow, now that is pretty artistic

karmajunkie 10y ago

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.

6stringmerc 10y ago
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.
- karmajunkie 10y ago
  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.
sib 10y ago
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/ https://www.amazon.com/dp/B00XSSYR50/

pixelmonkey 10y ago

Related: A Protocol for Dying, an interview with him for The Changelog from June 2016. https://changelog.com/205/ https://changelog.com/205/

r3bl 10y ago
Also, his previous couple of articles on the same topic: * A Protocol for Dying: http://hintjens.com/blog:115 http://hintjens.com/blog:115 * Planned Death: http://hintjens.com/blog:116 http://hintjens.com/blog:116 * Living, in Limbo: http://hintjens.com/blog:121 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 https://www.gitbook.com/book/hintjens/culture-empire/details

dredmorbius 10y ago

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 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-silk-ring-theory-20130407 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.

ciconia 10y ago

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.

DougN7 10y ago
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.
- FungalRaincloud 10y ago
  Personally, I take finding peace and love in your last moments as a way of raging against the dying of the light.
incanus77 10y ago
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.

newscracker 10y ago

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

Mahn 10y ago
> [1]: http://phdcomics.com/comics.php?f=1162 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.
- disease 10y ago
  There is already a method that prevents such mutations: old age.
- hughperkins 10y ago
  Chemistry is pretty fudgy, dirty, hazy; and your dna doesnt have ECC.
- wyqydsyq 10y ago
  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-ido-bachelet-on.html http://www.nextbigfuture.com./2015/05/pfizer-partnering-with...

jMyles 10y ago

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.

PieterH 10y ago
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.
- ChristopherE 10y ago
  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?

Practicality 10y ago

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.

mkriss 10y ago
Plant based diet is possible solution. [1] Watch documentary "Forks over knives" [1]. http://www.dresselstyn.com/resolving_cade.htm http://www.dresselstyn.com/resolving_cade.htm
protomyth 10y ago
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.
beachstartup 10y ago
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.

kohanz 10y ago

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.

idlewords 10y ago

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/ 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.

arisAlexis 10y ago

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.

rabidrat 10y ago
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.
- wyager 10y ago
  >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.
- arisAlexis 10y ago
  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?
  - deleted 10y ago
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mmagin 10y ago
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.

codingdave 10y ago

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.

reactor 10y ago

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

echelon 10y ago
I hear this coming from a multitude of sources too. If true, is simple sugar metabolism oncogenic? What is the mechanism?
- PieterH 10y ago
  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.
okket 10y ago
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 https://en.wikipedia.org/wiki/Epidemiology_of_obesity
astrostl 10y ago
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 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.
- dualogy 10y ago
  > 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.

nxzero 10y ago

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?

alfonsodev 10y ago

"..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.

univalent 10y ago

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.

_nullandnull_ 10y ago

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-International/dp/0062508342 https://www.amazon.com/Tibetan-Book-Living-Dying-Internation...

darod 10y ago

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--battling-cancer http://www.cc.com/video-clips/8kgu68/stand-up-norm-macdonald...

X86BSD 10y ago
THIS. First I am very sorry to hear about your condition. I sincerely wish you all the best in dealing with the scourge of cancer. Second, I can't backup your statement enough. Cancer is not related to diet or exercise, not one bit. Steve jobs got it and he lived on a vegetarian diet and lived a pretty zen lifestyle at home. Not a human, but my dog who was an inside dog rarely went out except to do her business, and got skin cancer a few months ago. This totally blew my mind because I thought you only got that from over exposure to UV. When the vet told me it was probably genetic I was really schooled at that moment. With all the radio waves, and microwaves blasting us 24x7, toxins in our food and water, it honest to god, matters not one bit how you eat or what lifestyle you choose to follow, cancer can get anyone at any time for any reason. I do not believe diet or healthy lifestyle make any difference on wether you get a cancer or not. If it does make a difference I believe it is negligible. P.S. FU$% Cancer!
- teach 10y ago
  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.

baldfat 10y ago

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.

Kenji 10y ago

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).

PieterH 10y ago
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!"

milesf 10y ago

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 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 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 http://bit.ly/1cor1_18-25

petewailes 10y ago
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.
- deleted 10y ago
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10y ago

shanacarp 10y ago

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-cancer-actually-a-lot-is-in-your-control.html 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.

FuNe 10y ago

" 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.

Mahn 10y ago
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).

newuser1111 10y ago

I want to say this story is personal for me.

olantonan 10y ago

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>

SideburnsOfDoom 10y ago
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.

raarts 10y ago

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.

frign 10y ago

This guy is a sheep of the medical system and has already given up just because his treatment stopped working as the doctors told him. Our society and food make us sick, our doctors keep us sick. Why trust them with cancer?

voltagex_ 10y ago
.
- DanBC 10y ago
  You can flag (and you can downvote) the obvious trolls.
  - voltagex_ 10y ago
    Done, thanks (initially couldn't see the flag link).
dang 10y ago
> 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.