I've been appreciating Pieter's posts, and his occasional comments on HN (I noticed one a few days back, on technical topics). I'm also increasingly apprehensive opening them. Though the only fatal disease I'm aware of fighting right now is life, my hope is to pursue my interests so long as I can.
I wasn't aware of Pieter before his recent blog topic started appearing on HN, though I'm pretty sure I'd come across his work. We're focused on different areas of tech.
I have seen cancer though, and much of what he writes here hits home, hard. I lost a very good friend, far too young, several decades ago. I'm looking at their picture now.
And remember going through much of what Pieter describes, though not as the central participant.
There were the other patients we met through treatment. Some of whom made it, some of whom didn't. And it wasn't necessarily those who appeared strong who lived.
There was the cheerleading and denial and people who were meddlesome. Those of us around the patient and family did what we could to steer the away. As Pieter says: the doctors tend to know the medicine pretty well (though chasing after them when things clearly aren't going right may be necessary). Unsolicited medical advice at this stage is almost always quite unwelcomed.
Small things can be huge.
What I remember, most, still: meals that showed up on the back porch with heating instructions. The neighbors had arranged amongst themselves a cooking schedule and coordinate this. No asking. No fuss. It just happened.
One less thing to worry about.
The other thing I remember was someone who, in all sincerity and good intentions, had forwarded information on a possible meracle cure. Laetrile. "The slickest, most sophisticated, and certainly the most remunerative cancer quack promotion in medical history," Wikipedia tells me today. We didn't have Wikipedia then, but I quickly established that this was in fact bunk.
It still makes me furiously mad: preying on sick people and those about the clinging desperately to any possible hope, in full knowledge that you're peddling bullshit. And those who get swept up in this and pass on the misinformation. Maybe that's why I've cracked down on online disinformation as well. It's not just duty calling....
https://en.m.wikipedia.org/wiki/Amygdalin
Pieter's comments on how cancer is "fought" are also extremely good counsel. Some things can be manipulated and addressed directly. For others, you can only hope to set up the right set of circumstances to achieve the outcome you desire -- fighting cancer is more like tuning algorithms or seeds for some stochastic process -- a raytrace render or algorithmic music render, say, for those familiar with them -- than aiming a rifle at a target and taking shots. Our ability to directly influence events is limited, mostly you're managing the bits about you, your environment. Staying comfortable, staying sane. So much as possible.
In describing dealign with those around him. Pieter reminds me of a general classification I've used in other contexts for people:
* There are those who mean to do well, but are unable to. The cheerleaders and advice givers tend to fall into this category -- their harm isn't intentional, but it can be real all the same.
* There are those who cause problems through their own systemic operation. Healthcare insurance systems, vendors, legal processes, and the like. The issue's less one of having malicious intent, though here it's a lack of sensitivity to what their impacts on others are, or simply failing to care. The impacts on those who are sick or disabled are hugely magnified.
* Finally, there are those who are actively evil. Scammers, predators, sometimes even family or neighbors angling for what they hope they might be able to gain. This again makes me sick. There are no pits of hell deep or hot enough.
Many years after the experience I'd mentioned above (and after several others), I found a good model for offering care -- it's the concept of a kvetching order:
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-s...
This consists of a set of concentric rings around a trauma, with the afflicted person at the center, and a growing set of less-affected care- and support-givers extending out. The basic idea is that care flows in, kvetches flow out:
The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
Those who cannot (or will not) grasp and follow the concept are excluded.
The article also has another really wonderful piece of advice: that sometimes simply listening is the support that's needed. I've been on both the giving and receiving sides of that, and I'm not aware of when it's not been appreciated (though as with other advice -- people may differ, be sensitive to their needs).
One more thought: at least in Western cultures, there's often a profound lack of awareness of how to deal with death, impending death, or recent death. That's something which could use improving (and no, I'm not suggesting a YC opportunity). I very much appreciate Pieter's occasional communications for helping with that, at least here.