
Fighting Cancer - egorst
http://hintjens.com/blog:123
======
Practicality
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.

~~~
beachstartup
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.

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

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

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

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

[http://thelastpsychiatrist.com/2012/12/funeral.html](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.

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

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

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

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

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

------
karmajunkie
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
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
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.

------
nixarn
A bit offtopic, but Hintjens has got the coolest activity graph on GitHub:
[https://github.com/hintjens](https://github.com/hintjens)

~~~
rralian
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)).

------
univalent
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.

------
ciconia
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.

~~~
incanus77
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.

~~~
kilroy123
I am so sorry for your loss.

------
baldfat
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.

------
jMyles
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
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
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?

~~~
voltagex_
>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.

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

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

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

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

------
newscracker
> 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
> [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.

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

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

------
danieltillett
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
I think the above comment accidentally omits 'not'.

This whole story is very moving.

~~~
melling
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
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
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
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
'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
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.

------
listentojohan
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.

------
idlewords
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.

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

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

[https://changelog.com/205/](https://changelog.com/205/)

~~~
r3bl
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)

------
kohanz
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.

------
jwdunne
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
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
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.

------
FuNe
" 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
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).

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

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

~~~
PieterH
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.

------
arisAlexis
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
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.

~~~
arisAlexis
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?

------
_nullandnull_
Every time I see his posts I think about the book The Tibetan Book of Living
and Dying. I would recommend reading it for anyone who might be having the
discussion or dealing with death in their life.

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

------
raarts
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.

------
alfonsodev
"..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.

------
nxzero
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?

------
newuser1111
I want to say this story is personal for me.

------
codingdave
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.

------
dredmorbius
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-s...](http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-
ring-theory-20130407)

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.

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

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

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

------
shanacarp
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...](http://www.nytimes.com/2016/07/06/upshot/helpless-to-prevent-
cancer-actually-a-lot-is-in-your-control.html)

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.

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

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

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

You deserve to enjoy the time you have

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

------
olantonan
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
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.

------
Kenji
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
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
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)

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

