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I’ve been battling cancer last 2 years, but now only have a few days left

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Re: I’ve been battling cancer last 2 years, but now only have a few days left

#241
post #231

Earlier quoted context omitted.

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

This reminds me of the old joke, "What do you call the guy who graduated last in his medical school class?" "Doctor." I went to school with many people who went on to become doctors. I can say with confidence not one of them is inherently better at researching, learning about, and coming to understand something than I am. I didn't choose to go to medical school. They did. But if I'm going to dump thousands of hours i…

https://en.m.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effec...

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#242
post #159
post #123

Earlier quoted context omitted.

Death is something people in my culture try not to think about much. It is considered that the dead are totally dead and gone, never to be spoken to again and spoken of with sadness and distance. People of other cultures think differently about death. Death is welcomed into the day to day life. Consciousness of death is invited, even celebrated. The dead are spoken to. This second group of people don't believe in the…

The processes in your brain and body that are your consciousness stop and you cease to be forever. After that point nothing that happens or happened matters to you because you no longer exist. Various cultures, religions, spiritual people want to deny this. They're probably happier for it, but I can only accept the dull explanation that we just stop and it's not very interesting.

> They're probably happier for it, but I can only accept the dull explanation that we just stop and it's not very interesting.

I don't find this view makes me particularly unhappy. In fact, 'living' forever in an afterlife seems incredibly stressful, given that you need to work towards that all the time (and you have no idea at all what it's actually like). Having a clear end makes things so much easier - you have a realistic timeframe you will live in and once you die, you have nothing to worry about anymore.

What I find somewhat strange is that people who say they don't want to live forever don't seem to mind an afterlife. Maybe something to ask them about the next time.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#243
post #239

Earlier quoted context omitted.

I've lived in India, UK and USA for atleast 5 years in each. I would take USA in a heartbeat if I can have good insurance You are getting cutting edge care in USA. For example, My father has prostate cancer and latest NCNN guidelines recommend 'triplet therapy' [1] at diagnosis and is the standard in USA. But in UK they you only get chemo and ADT via NHS. They also have major delays (years) in getting latest medical…

My personal experiences aside, one of the biggest problems with healthcare in the U.S. is that you do need insurance to get it. Otherwise the absolutely unreal cost for even the most basic interactions will bankrupt virtually anybody quickly. It turns out the times when people need healthcare the most is when they're the sickest, which is when they're least likely to be able to hold a job down, which is what most goo…

Yep. You can get all the insurance you want when you don't need it. But when you get sick and do need it, then you'll likely lose it.

And that's still better than it used to be. As long as you're not too sick to work, you might still be able to get something now. Pre-existing conditions used to just be a death sentence.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#244
post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

> Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. We are about enter this system for my dad for end stage Prostate cancer. Wondering whats in store for us :|, curious to hear any specific we should watch out for.

I'm so sorry to hear it :(

All I can really say is that in general, advocate advocate advocate. Don't take no for an answer, don't settle for "the policy", double-triple check in/out network providers and take control of the situation and above all, be polite. Yelling will cause them to shut down, but polite firmness will put you in command. There are often clever ways around seemingly insurmountable obstacles [1]

It's easy to forget that doctors are simply a service provider and provide services you request or consent to. Treat them no different than a waiter, or an engineer, they have no magic, only training. Quality of care can vary wildly across doctors, nurses, and facilities. The system they work within is broken, and its broken what it means to "practice medicine".

The only people who care about your father is your family, and they have to never forget that and tirelessly push that point of view.

1 - An anecdote: I temporarily became an on-call "IT technician" for a day to get around covid restrictions at one facility my father was having a hard time at. The staff couldn't do anything about it and honestly felt bad, then we all realized that employees could go anywhere, while family and guests could not.

edit this response also mirrors my own, https://news.ycombinator.com/item?id=34044230

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#245

Earlier quoted context omitted.

I'd rather not go into personal detail but I share a similar experience. The thing that really drove it home for me was when I got back home and was telling my own doctor about my experience dealing with family in the medical system and she said I was mistaken or there was a misunderstanding because that kind of thing doesn't happen. I asked why she was siding with a doctor she'd never met before instead of listening…

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

Holy cow are you me? I haven't had as bad an experience as you either in terms of symptoms or medical care, but I'm hoping that right now I'm turning a corner, having started supplements of both of these and am feeling a lot better.

The weirdest things I've been through were uncontrollable muscle spasms and numbness on half of my body, in various places. I had shingles a little while back and it seems like that side was affected more by the nerve issues. I've had a lot of anxiety about strokes, but I'm finally starting to chill out about it. I've only lost 10 pounds from the digestive issues, luckily, though I was already on the thin side.

My D is already tested as mildly deficient, and B12 I'm getting myself tested next week (the most sensitive tests you can get, Homocysteine and Methylmalonic acid). But the drastic improvement I've felt while increasing my B12 intake has been pretty telling. I think it's helped a lot more than the D supplementation, which gave me a bit more energy but didn't do much for the really bad symptoms.

I'm vegan and was actually supplementing B12, about 250 mcg per day. I thought that was enough, but my current theory is that I've just been getting barely adequate intake given that my digestion isn't always great, and the recent bout of shingles I had combined with some anxiety about unrelated life stuff pushed me over the edge. Then I tried taking a bunch of B12 one day just in case that was the issue, and felt absolutely awful -- which I unfortunately interpreted as "B12 caused a bacterial overgrowth in my intestines" and not "My nerves are damaged and started to repair themselves, and my brain is getting temporarily over-stimulated with sensation". I think the latter was what actually happened, but because I believed the former at the time, I stopped my B12 for a bit and that did not help. I thought I had enough stored in my body that skipping a while, then resuming a reduced dose, would be fine.

For about a week now, I'm taking 1500 mcg per day split into 3 doses, which is supposed to let you absorb a lot more than a single dose (though still only a tiny fraction of what you take, maybe 6-12mcg instead of 2-4, as a wild ballpark). The biology behind B12's dose-absorption curve in pretty interesting. Your stomach lining produces a chemical called "intrinsic factor" which B12 has to bind to to be absorbed, because it's a big chunky molecule that has a really time passing through your intestinal wall alone. Once that intrinsic factor is all used up, you have to wait a while for more to be produced. But if you take a TON of B12, some of it does manage to get through by chance, even if not bound to the intrinsic factor.

Funniest/scariest thing that happened to me was just a few days ago, when my jaw started opening like a yawn, repeatedly, and uncontrollably. I could only get out a word or two before my mouth would open. The morning after getting checked out to rule out stroke (hooray, another ER visit), I realized that I had started yawning again after not really being able to yawn for a long time, and not even noticing it as a thing that might be related to everything else. I think that was the nerve that controls yawning waking up and getting a bit over-excited. It eventually passed after about an hour.

As bad as this has been for me, I've been very lucky to already have been interested in nutrition and had enough background knowledge to figure things out after only a couple of months and without my symptoms getting too bad. (assuming I'm right, that is -- I'm reasonably confident but I'm trying not to get my hopes up too much).

I can't imagine what it would have been like to go through what you went through. I'm glad you eventually figured it out.

I think a big problem with B12 deficiency is that the symptoms are varied and often vague enough that all sorts of folks who don't know what they're doing have latched on to it, and people often self diagnose with it incorrectly, possibly delaying a correct diagnosis. I wonder if some doctors have just seen too many people who do this (but maybe I'm being too charitable). Yet it is a real and deadly serious issue, and the standard guidance on it is maybe a bit out of date.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#246
post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

I feel like I'm missing something, what did the medical system actually do wrong? I feel like I'm missing an intermediary paragraph talking about high fees or uncompassionate doctors or something similar.

It's longer than I care to really write, but I think this comment (not be myself) gets to the essence of my experience as well

https://news.ycombinator.com/item?id=34044230

and an anecdote I don't care to rewrite https://news.ycombinator.com/item?id=34047842

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#247
post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

I went through this with my then 94-year-old grandfather a couple of years ago. I ultimately came away from the situation realizing that things only got done when you actively threaten people and force them take action. Doctor doesn't want to properly follow up on a stage-iv foot ulcer and home wound care misses scheduled appointments? Ok, we're going to the ER and telling them that the doctor doesn't respond to his…

You experience nearly mirrors mine with the exception of age and the circumstances of care. But the need to exhaustively advocate for even basic care was, to be honest, harder than losing my father in the end. It's painful to say, but after he died the relief my family felt from not having to fight every "care provider" constantly for every single minor thing was palpable.

You have a follow-on comment about your options being cheaper and less time-consuming. My experience also perfectly mirrors yours. My father chose literally the cheapest, smallest resource consuming (in terms of time, people, and expertise), and fastest path available today, and it seemed at every turn we were confronted with a medical professional demanding a useless, time consuming, expensive, resource intensive, activity -- only to then fail to deliver on that activity when they actually had to do it due to: expense, resources, and time.

There were times when I felt like I was talking to confused farm animals, not people with some of the highest education possible in our civilization.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#248
post #193
post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

I'm not clear how that relates to the post or what exactly the medical people did wrong from your post? I have a had a few elderly relatives go through long bouts of treatment and they got good diagnoses and care all the way across. The worst was my grandmother's chemo was pharmaceutical and the pills were $2000 a dose and not covered by Medicare at the time.

I have a bunch of other comments in here that relate some of the story. It's honestly too much to give a daily play-by-play of six months of somebody's life.

Suffice it to say I wouldn't accept the service-level we received at a fast food restaurant.

But medical care is wildly variable in the U.S., even just changing a nurse, or going down the street to another facility can magically transform an episode of care from "the dumbest nonsense I've ever experienced" to "reasonable and compassionate".

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#249

Earlier quoted context omitted.

I won't agree about the American medical system but I'd say that our hospice system is pretty much Soylent Green .

The American medical system is an absolute travesty. To be fair to you though, this only really becomes obvious when one experiences functioning medical systems in other countries.

I've had the good (bad?) luck to go through a few non-US systems and can say that you have to get pretty far down the OECD development index to hit U.S. medical system level of terribleness.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#250
post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

Why can't we have a non-scammy version of Theranos that detects cancer early? Why is this so hard?
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