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I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do mor

I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights. I'm not on the inside of the family but I wonder if the author is pushing the trial much more than the patient. I hope not. I also hope that when/if this situation strikes my family, I am able to keep things in the patient's perspective. It seems like it may be very hard to do.

sdwr 3y ago
What I remember from part 1 is that his tongue was cut out and chemo made him want to die. The series is a look inside the Type A personality. I see it as the intersection of addiction and unshakeable self-assurance.
inopinatus 3y ago
If you were here for part one, it opened with: "his only chance at survival is a miracle clinical trial drug". Desperation drives us all to be magical thinkers, even someone with a medical degree, and it's a natural error for hope to intensify into belief that somewhere out there is a magic potion that will solve all the health problems of the loved one they feel otherwise powerless to help. Cue a billion words on substack. The harsh part: just because you or someone you adore is (to use a medical term) circling the drain, doesn't make you/them more entitled to something. We are all already entitled (certainly morally, in many jurisdictions legally, and sometimes even financially) to the current standard of care, and sympathy besides, for any suffering or condition we are currently undergoing. We're all dying. Sorry. Some people carry the horrible knowledge that for them it will be soon, and from something specific. And at any given moment, that's actually quite a lot of people. Again, we can share a moment's sorrow. The quiet part: if poor admission protocol fucks up the science for something that could extend or improve life for millions of others in future by advancing the standard of care, then it was the gatekeepers for that process that are culpable. Not even the hardest of hearts would seek to blame a patient, or their advocate, for trying something, anything. But they are nonetheless expected to default to a closed door.
derstander 3y ago
> I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights. I'm not on the inside of the family but I wonder if the author is pushing the trial much more than the patient. I hope not. You needn’t wonder too much, you can satisfy your desire to know by simply reading Jake’s blog if you like. Not sure if there was a link to it on the posted article, or if it was linked from one of the other parts in the series. https://jakeseliger.com/ https://jakeseliger.com/
- projektfu 3y ago
  Thanks!

sdwr 3y ago

What I remember from part 1 is that his tongue was cut out and chemo made him want to die. The series is a look inside the Type A personality. I see it as the intersection of addiction and unshakeable self-assurance.

inopinatus 3y ago

If you were here for part one, it opened with: "his only chance at survival is a miracle clinical trial drug". Desperation drives us all to be magical thinkers, even someone with a medical degree, and it's a natural error for hope to intensify into belief that somewhere out there is a magic potion that will solve all the health problems of the loved one they feel otherwise powerless to help. Cue a billion words on substack. The harsh part: just because you or someone you adore is (to use a medical term) circling the drain, doesn't make you/them more entitled to something. We are all already entitled (certainly morally, in many jurisdictions legally, and sometimes even financially) to the current standard of care, and sympathy besides, for any suffering or condition we are currently undergoing. We're all dying. Sorry. Some people carry the horrible knowledge that for them it will be soon, and from something specific. And at any given moment, that's actually quite a lot of people. Again, we can share a moment's sorrow. The quiet part: if poor admission protocol fucks up the science for something that could extend or improve life for millions of others in future by advancing the standard of care, then it was the gatekeepers for that process that are culpable. Not even the hardest of hearts would seek to blame a patient, or their advocate, for trying something, anything. But they are nonetheless expected to default to a closed door.

derstander 3y ago

> I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights. I'm not on the inside of the family but I wonder if the author is pushing the trial much more than the patient. I hope not. You needn’t wonder too much, you can satisfy your desire to know by simply reading Jake’s blog if you like. Not sure if there was a link to it on the posted article, or if it was linked from one of the other parts in the series. https://jakeseliger.com/ https://jakeseliger.com/

projektfu 3y ago
Thanks!