Fighting Cancer
hintjens.com
hintjens.com
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.
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.
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.
Platitudes are often an oblique way of saying "I empathize and I wish you the best" while not being discouraging.
Actually saying the above might be preferable, but it's unfair to criticize the gesture, I think. If I mention this, it's because I think there are parallels to be drawn with other, more contentious, issues in which people take more serious offense.
http://thelastpsychiatrist.com/2012/12/funeral.html
> (...) The hyena is caught awkwardly, so he rests his paws on the woman's shoulders, and now the sobbing woman must associate her last chance to be with what is left of her father with the stale breath of a sycophant waiting for his moment to be relevant.
> And while that's going on others are whispering to the quivering back of her coat, "oh, I'm so sorry", "I'm sure he really loved you", "are you ok?"
> Why did any one of them think they had the power, the right, to interfere with another person's mourning? This was between her and her father and God and no one else. Did no one notice that even the husband had given her space? Did they just think he was being a jerk? "I just wanted to comfort her." No, you didn't know what else to do, so you did that. "I didn't want her to be alone." That's because you are a terrible person.
I.e. the woman struggled to spend her last moments with her father while the surrounding mourners (each vying for her attention) entered a pissing-contest to prove who had more empathy.
I agree with your example but I think it's a different thing altogether.
Plausible Deniability is why these gestures are socially acceptable. "I'm sorry to hear that" or "that sucks" (i.e. acknowledgment) would suffice. But that's not what Pieter Hintjens' associates told him, is it? Instead, they went the extra mile by offering unwarranted advice. Notice that "I'm sorry to hear that" doesn't connote that the speaker holds relevant information, and is therefore important and worth paying attention to. Regardless of how we define gesture, it is not lost on Hintjens that the stock phrases he receives nudge the conversation in a particular direction.
Of course, if you are referring to here on HN, I only posted it to share in the phenomenon. While I appreciate that many are offering sympathy, I certainly wasn't expecting it here :)
The first couple of times I received platitudes, it irked me. Later I realized they were just trying to make me feel better and took it for what it was. Not everyone has gone through this, either themselves or with a loved one.
In American culture, this use of "Are you okay?" is not at all literal. It is a polite and well-understood way of opening a dialogue in which the other party can detail the problems stemming from the situation under discussion (implicit from the context of the question) with which they require either emotional support or more concrete assistance, without actually asking for assistance, and without the initiator overtly suggesting that the other party needs assistance in the first place. Its a means of offering support within the context of America's culture of maintaining the illusion of self-reliance. (OTOH, because of that culture of self-reliance, even this elliptical opening is expected to be declined in most cases with, in most cases, an "I'm okay" or, when that is so manifestly not the case as to be ludicrous, "I will be okay".)
The more direct forms which do overtly reference a perceived need for assistance ("Is there anything I can do to help?" or, even moreso, "What can I do to help?") are generally considered less polite and less acceptable, particularly in public and/or from more distant acquaintances.
The morality of not taking care of oneself is subjective, of course.
Edit: I should say I lost a sibling to incurable cancer at a young age. I have heard no end of useless advice about her diet, special almonds, clinics, etc. So I strongly believe in not sharing advice that helps a majority when talking to a particular person, even though I know there are ways to live that reduce likelihood of some cancers.
"having a BMI between 30 and 35 shortened life by an average of 0–1 years, having a BMI between 35 and 40 shortened life by 1–3 years, and having a BMI above 40 shortened life by 1–7 years"
(This is easily googlable, I don't want to turn this message into a journal article)
Note that the error bars on the effect are quite large (1 to 7 years even for extreme obesity). Now it's true that a lot of things hide in an "average", and there is a lot to discuss here, and I am definitely not discouraging anybody from acquiring healthy habits and lifestyle, but... it's just not a simple story of reward for virtue and punishment for sins. Genetic factors which we have no control over probably have a greater effect. Which is not a story that people want to hear.
However, I don't know if I would give too much thought to the effect for low BMI - it could just be that people with extremely low BMI tend to have some disease process which causes that; only a small minority of them are rail-thin athletes. For high and extremely high BMI, there are known causal mechanisms for disease, so it's a different story.
Fundamentally, actually shrinking that error bar for many diseases is one of the biggest hard science and math problems of the future.
It's going to be so exciting!
Respectfully, I haven't said anything about living until a very old age. I am only talking about a few diseases and I understand there are a lot of ways to die. I have also said the morality of not trying to extend lifespan is subjective.
One of humanity's greatest questions is "Why do bad things happen to good people?"
The inconvenient truth, of course, is that the universe is cold and uncaring, and random chance and statistics means that bad things will happen.
But we humans hate that answer. We crave structure, patterns, cause and effect, order. Why did flooding destroy a city? You must have angered the gods with your sinful ways! There we go. Cause and effect. Peace of mind. Rules have been created. The universe makes sense again.
Why do young people get cancer? They ate the wrong food! They didn't exercise enough! They didn't fight the cancer! They did this, they didn't that. Cause and effect. They broke the rules. And as long as I don't break the rules, bad things will not happen to me. I will never anger the gods, eat the wrong food, or forget to exercise, and those who do, they're immoral and deserve the bad things that happen to them!
And that is why this is a morality play.
So -assuming that I do care and that situation makes me sad- what am I supposed to say? How could I really help?
Or "I'm sorry to hear that. Is there anything I can do?"
Or any general statement of empathy. I've been in a similar situation, and those were the best replies.
But everyone is different, so I'd ask a few more people what were good responses. Probably whatever multiple people mention is a good answer.
> Or any general statement of empathy. I've been in a similar situation, and those were the best replies.
In a similar vein, "that sucks" seems appropriate.
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...
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.
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.
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.
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.
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.
Yet given that, it seems highly risky to me to even be open to the notion that I can second-guess the machine. That is, to find a better treatment, using my own knowledge and that of the Internet, friends, family, etc.
The risks are well known: endless 'alternative' cures that prey on the most vulnerable, taking their money and time, and leaving them to die. It ranges from amateurish nonsense to sociopathic predation. The common thread is patients who don't trust the medical machine, and think they can do better.
So when people tell me that I can find a cure, if I look harder, my reaction is "oh piss off!," before I delete their email. That is not my duty, not within my power, not for a disease like cancer. I mean, even looking for a "better" clinic is such a major undertaking that it lives in a different universe than mine.
I do trust my doctors. They won't cure me, yet they will look after me, manage my pain, and when it comes to it, they will help me die smoothly and easily.
I think it'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?
Lack of education and a (worrying) growing mistrust in science and the scientific method.
Thus, turning to alternatives is not necessarily mistrust in science, but a desperate search for something tolerable that could work.
Another possible factor that helps here is that many doctors are as inhumane as the treatments they recommend, and in some cases are not up to date in the latest science, so you end up having to educate them.
Although I agree that the decision to look for something else has to come from the person in the trenches, not as a well meaning (really?) suggestion from an outsider. Some people do want to fight that fight in addition to the normal fights Pieter mentions.
[My native language is Spanish, please don't read the "you" here as some direct advice to you, it's a generic "you".]
It's important to get good doctors, there are good doctors and bad doctors, and the default health service doctor may be not be optimal. In most situations it's not possible to get a x10 doctor that will make you live x10 more, but a good doctor will reduce the number of unnecessary and stupid medical procedures and provide better treatment.
[Some people strongly disagree with this.] Read Wikipedia article, all the links, the fist 20 Google results and then a little more. Be aware that the Internet is full of scammers, crackpots, and overhyped press release from universities, so take everything with a (huge) grain of salt. Don't expect to find a magical cure, the idea is to have a minimal understanding of what is happening, understand better what the doctors are saying and what they are not saying, the tradeoffs, the risks, ... Remember that it is not your field of expertize, so don't get too confident. (For example if you are an expert in software, think that it's a hardware problem, so there are many tricks of the trade that you don't know.)
https://www.youtube.com/watch?v=j7zzQpvoYcQ https://www.cmu.edu/randyslecture/book/
I consider myself lucky to have had the opportunity to work with you and learn an awful lot along the way. Thanks!
I think the more important take-away is each patient should find the treatment that works for them. There are many people who are fully accepting/trusting (whatever term you choose) of the "machine". It works for them, don't knock it.
There are other people who want, and/or need, to look for alternatives. Some of them work and work very well. But, some people don't have the stomach for that, or they second-guess the idea that they "could have done more".
I had a good friend die from cancer a few months ago. After the first surgery and round of chemo, his Oncologists told him all was well, full remission. About a year later, it returned somewhere else. More surgeries, more chemo, full remission.
The third time, now in his lungs and brain, they said even with surgery and chemo he had about 6 months to live. Instead, he took the route of alternative treatments in the US, Mexico & Canada. All of these treatments were by fully licensed Oncologists who have been practicing for 20+ years.
Every 3 months his "machine" Oncologists said they were surprised to see him for another follow-up visit. This went on for 5 more years.
Bull. People get better randomly, but pattern matching makes this really hard to accept. After all, you best get your lucky hat before the big game just like 100,000 other people.
As to caner, day one they are going to tell you your odds of survival long term and they are never 100%. https://xkcd.com/931/
I completely agree. I also know that some treatments work for some people.
> but pattern matching makes this really hard to accept.
I'm stating that a patient needs to find what works for them. Sometimes that's surgery, chemo, radiation, all of the above or no treatment at all.
I've known friends & family members improve, or not, on some/all of the above. The point is that everyone is different. People react differently to identical treatments. That's why some people develop diseases and others don't in the first place.
> As to caner, day one they are going to tell you your odds of survival long term and they are never 100%.
The only thing 100% is NOT surviving. How you come to your end is your choice. Some people chose to do that on their own terms, with their own treatments that may provide better quality, and/or quantity, of life. You don't have to make that choice, but you can't tell someone else not to.
Do chemo* and die in 2 months. That may seem like a bad choice. However, you don't know the outcome and can only guess at the odds.
Saying ahead of time you don't think the odds are worth it is one choice. But, you can't look at the outcome and then say the choice was wrong it must be in the context of uncertainty.
As to alternatives that's doing nothing while playing make believe. But hey, some times doing nothing works.
*Chemo, retro virus, wonder drug, or something with actual odds of working.
Try other things and odds are very good your going to make things worse and get many people killed. Yet, some people still don't use seat belts because of those tiny odds it's going to make things worse. Let's avoid vaccines, buy guns, and go vegan because clearly we are a special snowflake unlike those other drones.
Sorry, you and everyone you ever know, or even read about are going to die relatively soon. Such is life and death. But, not thinking about it well that's easy.
This must be true, because a version of this has been told to me by 4 out of 5 people that I've ever met.
People believe this kind of stuff on an emotional level because they can't face their own mortality. I have a theory this is why we're so interested in how other people die. It's so we can disconnect other people's deaths with our own - "I don't have to worry about dying that way because I eat plenty of vegetables/don't smoke/don't drink/don't associate with violent people and therefore I don't have to think about dying."
At the end of the day, it it your body. You are responsible for it. You may not be an expert in what all of it does in its majestic form and function, but that is why doctors, nurses, and researchers exist.
You live in it. When you are explaining stuff, be it pain or pleasure, to a doctor, that experience is mediated by the sheer fact that your doctor is not you and does not live in your body, does not receive sensory input from your body. Your doctor receives sensory input from his/her body.
Even if your doctor has extremely similar experiences, there is no guarantee that they will fully understand you and your predicaments. Most doctors in the US know what a severe sunburn looks like, and many will have had them growing up. Most also have not seen Phytophotodermatitis (aka lime disease http://www.theatlantic.com/science/archive/2016/07/burned-by... ), nor will have had them growing up. With the growth of artsinal cocktails and people realizing fresh citrus juice tastes better, it's occurring more frequently. Now there is an educational push,but that doesn't equal expedient treatment and lots of doctors recognizing on sight yet before it gets bad.
While Phytophotodermatitis is a trivial example, for patients with serious diseases (and not serious but not common ones too) the example holds and can be expanded. Patients banding together to change this is generally what causes major changes in healthcare policy in the US president,as well as direction in research. (The most famous example is in the late 90s/early 00 with aids via act up nyc. The documentary "how to survive a plague" covers this extremely well")
So yes, you totally should question. You totally have more power than you think. Act on it.
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.
So, forgive me if I'm being naive because I don't really have professional experience in the field of cancer research, but this comic makes it sound like a cure for cancer is impossible because it would have to deal with million different forms and shapes that it can take, but, theoretically, wouldn't it be possible to attack the root problem instead, and find a way to biologically enhance our dna replication "algorithm" to prevent mutations in the first place? Surely it's better to prevent the mutations in the first place than find a cure for them, since then it's a single problem.
I 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...
The root cause solution is very likely going to be through some sort of genetic engineering (which is again quite complex). Preventing (bad) mutations requires (in my ignorant opinion) observation over a longer period of time after we find that there's a mutation. This would also need a lot of study and knowledge to be collected across races, genders, ages, etc. In summary, I think we have very less knowledge/information and need a lot more information, time and effort to get to solutions that would work for any human on the planet.
This whole story is very moving.
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:
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.
http://www.cancermoonshot2020.org
Do you have to survival rates for the various cancers. That's the benchmark, right?
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.
That's sort of how progress and improvements work, they benefit those that come later.
> We're racing to get self-driving cars to save a lot fewer people
And those people working on cars are probably don't have the skills or drive to deal with medical research. That not everyone on the planet is working on what you believe they should be means nothing.
We need that sort of excitement and effort for cancer research. Eventually 40% of Americans will get cancer, for example:
I say ridiculous because medicine is awash with similar predictions, the vast majority of which have never come true, or materialise far far later than anticipated.
The future does indeed look bright... from the very specific perspective of the researchers. Unfortunately if you are someone actually living with lung cancer or pancreatic cancer, for example, that bright future suddenly looks a lot murkier.
Fortunately my friend remains in remission, while I remain flabbergasted at the irresponsibility of that oncologist.
I heard Craig Venter once say that the cure for cancer is early detection. Wish I could find the video.
Early detection is double-edged sword: It is very hard to tell in early stages if the cancer develops into harmful variants and a small false positive error can have drastic consequences, if applied on scale [1]. The result is that many undergo unnecessary therapy with 100% harmful consequences (not life threatening, but permanent damage like removed organs/sterility).
See also: "The Case Against Early Cancer Detection"
http://fivethirtyeight.com/features/the-case-against-early-c...
I'd put my money (research) rather on better treatment than earlier detection.
Also, i'm not sure why we can't have both: better early detection and better treatments.
One of the vps from Google's moonshot division,Jeff Huber, just left to head up a company that is a spinout of illumina, called Grail
No affiliation, but they have a bunch of interesting software jobs open after looking at thier site
http://newton.newtonsoftware.com/career/CareerHome.action?cl...
This is one reason nobody recommends widespread screening for pancreatic cancer - apart from the inevitable false positives and so on. We currently don't have anything very wonderful to offer even to people in whom it was detected early, although it does improve the chances somewhat.
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.
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.
I came to the thread to recommend a recent book by Atul Gawande, Being Mortal, http://atulgawande.com/book/being-mortal/, which covers the difficulties of dying (from age or from illness) and touches on many of the same points as this amazing post.
* A Protocol for Dying: http://hintjens.com/blog:115
* Planned Death: http://hintjens.com/blog:116
* Living, in Limbo: http://hintjens.com/blog:121
I have also read his book titled Culture & Empire in the previous couple of months and quite enjoyed it. It's available for free here: https://www.gitbook.com/book/hintjens/culture-empire/details
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.
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.
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.
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.
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.
Tell me, what would you do if your spouse had no interest in cryonics but you did? It complicates the decision a lot.
https://www.amazon.com/Tibetan-Book-Living-Dying-Internation...
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.
As an example, over half of those diagnosed with cancer are over 70 years old and 100s of billions have been spent on research.
What is an object way to decide if all the effort spent of cancer research is of value relative to other area of research where progress might be made?
I wasn't aware of Pieter before his recent blog topic started appearing on HN, though I'm pretty sure I'd come across his work. We're focused on different areas of tech.
I have seen cancer though, and much of what he writes here hits home, hard. I lost a very good friend, far too young, several decades ago. I'm looking at their picture now.
And remember going through much of what Pieter describes, though not as the central participant.
There were the other patients we met through treatment. Some of whom made it, some of whom didn't. And it wasn't necessarily those who appeared strong who lived.
There was the cheerleading and denial and people who were meddlesome. Those of us around the patient and family did what we could to steer the away. As Pieter says: the doctors tend to know the medicine pretty well (though chasing after them when things clearly aren't going right may be necessary). Unsolicited medical advice at this stage is almost always quite unwelcomed.
Small things can be huge.
What I remember, most, still: meals that showed up on the back porch with heating instructions. The neighbors had arranged amongst themselves a cooking schedule and coordinate this. No asking. No fuss. It just happened.
One less thing to worry about.
The other thing I remember was someone who, in all sincerity and good intentions, had forwarded information on a possible meracle cure. Laetrile. "The slickest, most sophisticated, and certainly the most remunerative cancer quack promotion in medical history," Wikipedia tells me today. We didn't have Wikipedia then, but I quickly established that this was in fact bunk.
It still makes me furiously mad: preying on sick people and those about the clinging desperately to any possible hope, in full knowledge that you're peddling bullshit. And those who get swept up in this and pass on the misinformation. Maybe that's why I've cracked down on online disinformation as well. It's not just duty calling....
https://en.m.wikipedia.org/wiki/Amygdalin
Pieter's comments on how cancer is "fought" are also extremely good counsel. Some things can be manipulated and addressed directly. For others, you can only hope to set up the right set of circumstances to achieve the outcome you desire -- fighting cancer is more like tuning algorithms or seeds for some stochastic process -- a raytrace render or algorithmic music render, say, for those familiar with them -- than aiming a rifle at a target and taking shots. Our ability to directly influence events is limited, mostly you're managing the bits about you, your environment. Staying comfortable, staying sane. So much as possible.
In describing dealign with those around him. Pieter reminds me of a general classification I've used in other contexts for people:
* There are those who mean to do well, but are unable to. The cheerleaders and advice givers tend to fall into this category -- their harm isn't intentional, but it can be real all the same.
* There are those who cause problems through their own systemic operation. Healthcare insurance systems, vendors, legal processes, and the like. The issue's less one of having malicious intent, though here it's a lack of sensitivity to what their impacts on others are, or simply failing to care. The impacts on those who are sick or disabled are hugely magnified.
* Finally, there are those who are actively evil. Scammers, predators, sometimes even family or neighbors angling for what they hope they might be able to gain. This again makes me sick. There are no pits of hell deep or hot enough.
Many years after the experience I'd mentioned above (and after several others), I found a good model for offering care -- it's the concept of a kvetching order:
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-s...
This consists of a set of concentric rings around a trauma, with the afflicted person at the center, and a growing set of less-affected care- and support-givers extending out. The basic idea is that care flows in, kvetches flow out:
The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
Those who cannot (or will not) grasp and follow the concept are excluded.
The article also has another really wonderful piece of advice: that sometimes simply listening is the support that's needed. I've been on both the giving and receiving sides of that, and I'm not aware of when it's not been appreciated (though as with other advice -- people may differ, be sensitive to their needs).
One more thought: at least in Western cultures, there's often a profound lack of awareness of how to deal with death, impending death, or recent death. That's something which could use improving (and no, I'm not suggesting a YC opportunity). I very much appreciate Pieter's occasional communications for helping with that, at least here.
Single thing that flips me off on social media is seeing my friends pollute my wall with memes claiming things like "cannabis cures 7 out of 10 cancer occurences, vote legalize!" or "vitamin b17 is scientifically proven to cure cancer, FDA & Big Pharma made sure those scientists are gone."
Most of time I let it slip, but sometimes I politely try debunk the meme in the comments, hoping that at least some fellow readers would follow on my arguments and use it to widen their knowledge.
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.
Paperwork... is just work. I've a complex situation, made worse by some, let's say, recalcitrant spirits. No pity for the dying, in some quarters. The summer months in Belgium are dead, which makes it harder to reach the necessary people. I do appreciate the offer of help though :-)
You deserve to enjoy the time you have
And the summer months appear to be dead throughout the west. eh. It seems to be a thing
Dying. Not dying.
Sustrik is God. Sustrik is Satan.
What's up with this guy.
</nasty-joke-from-big-hintjens-fan>
I know many people find Christianity and the subject of faith to be uncomfortable, even offensive. But that's because the Christian message _is_ offensive. It makes claims that exclude all other options, that evil is real and that we are responsible for it. To me, either the message is true or it isn't. There is no grey. Either Jesus Christ was a liar, a lunatic, a legend, or He is Lord God Almight.
Penn Jillette, the famous atheist and half of Penn and Teller had it right, that if we removed all the scientific research in the world we would be able to rebuild it all, but religions would be all different. I agree with him, and so does the Bible. It says that God reached down to us, delivered messages in ways that statistically rule out purely human effort, and gave us a choice to trust Him or not (have a look at http://thebibleproject.com) . In the end, everyone's going to get what they want (if you want Jesus Christ you get him, if you don't you won't). That's why for my Dad and I, we both had to be convinced that the Bible was not simply human in origin.
Whatever your view, I can only speak to my own experience. The loss of my mom September 1st, 2015 to double-hit lymphoma was very, very painful (she was 68). But in the midst of the pain was a hope and peace as explained in Philippians 4:4-9 (http://bit.ly/phil4_4-9). Then, unexpectedly 120 days later, my dad died from lung cancer (age 72), leaving my brothers and sisters and I with a property and 47 years of marriage and memories for us to sort through and deal with.
We are all going to die. The question is not if but when. To put off the discussion about what happens after you die is to deny reality itself, and telling others not to have that discussion or that their position is stupid or foolish is really dumb. Oh, and in case you think the Christian message is foolish, the Bible agrees with you that it is http://bit.ly/1cor1_18-25
Presenting a religious message like this is off-topic on HN, though, and bound to get people's backs up.
I used to be a nihilist. I kept asking the same two-word question: then what? Take every hope and dream you have right now, and ask yourself "once I achieve this, then what?"
I have the answers I was seeking, and it actually isn't religion. It is relationship. Religion is actually just "to visit orphans and widows in their affliction, and to keep oneself unstained from the world."
Besides, I'm used to getting people's backs up. Vim is the greatest text editor ever :)