I’ve been battling cancer last 2 years, but now only have a few days left
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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 hospice systems are as near to worthless as any amount of money can buy -- at most times an absolute farce.
These were people who went out of their way to make things a little less worse, but they all worked on the periphery of the system: drivers, suppliers, and so on.
Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate.
I miss my Dad.
https://www.huffpost.com/entry/doctors-death_b_1500871
https://www.theguardian.com/society/2012/feb/08/how-doctors-...
Blatant favoritism is obviously wrong in the treatment of doctors and their families. That’s not what I’m talking about (it’s disgusting). Them knowing how to use the convoluted system is different, though, and I don’t think it’s something of which you should be ashamed. Especially if you/they work to make it a better system.
If the parent comments have made it to this response: I’m sorry for your loss. Watching my healthy grandfather fall apart and die during the peak of the pandemic was a wake up call for me regarding the sad state of our healthcare system.
This sort of help is available to everyone in the form of internet forums and formal guidance for privileged folks. It just came easier at every step for my friend. Like I've been saying: I don't think this is inherently wrong/evil, but it's something of which to be aware. My family and I are perfectly competent when it comes to navigating this sort of environment, and I definitely considered/wanted being a doctor. I wasn't able to make it along that track. (That being said, I'm happy my lot in life landed me as your average code monkey; it's great.)
A year later I've realized that my father was 80 years old. We all have to die at some point. Your father was 87. I understand you're upset. It may be that there was more for the medical system to do, there may not have been.
At what point does spending possibly millions of dollars to extend some one's life 1 year, 2 years stop becoming good and turns into actual harm?
They have to go at some point. Even if it is someone else's fault.
I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's not what the hospice is tasked with doing. When someone has a terminal illness and refuses treatment what they are supposed to do is provide care while their illnesses kill them. They are to provide needs so other things don't kill them, not kill them earlier or make their conditions worse with laziness or incompetence. One example of something cancer shouldn't cause is bedsores from not being moved out of bed periodically. From how bane wrote of it, it seems like they were very far from any reasonable standard of care, so it would be hard to say what specifically would have gone better with his father's physical and mental condition during his months after diagnosis.
As far as bane's father's diagnosis, I think it's likely if the medical system had worked harder to diagnose him they could have.
You either suffer through a shit medical system, or have a needlessly painful/uncomfortable death.
Killing babies is OK and now so is euthanasia? But suicide is used as ammunition to remove access to guns?
Euthanasia is a choice you make governing your own life.
Abortion is a choice you make governing another being’s life.
As for suicide and guns - I’ve never heard this one before. There are plenty of options for suicide that don’t involve guns.
I visited the ER a total of 5 times during those 3 weeks (having never visited the ER one time in my previous 35 years of life). Each time I was told to go home and rest. I received no care. I was unable to stay awake for more than a few hours and eventually became unable to talk and too weak to walk. I was unable to talk, eat, stay awake, and even drinking water was miserable. I lost 30 lbs in 1 month. I had to go on disability from my job (Site Reliability Engineering Manager). Life was so bad.
Over the course of the next 10 months I visited a dozen different specialists. Most of them weren't even worth the copay. A lot of doctors are absolutely worthless. I did eventually build up a team of talented and caring doctors. But 80-90% of the doctors I saw had zero care of my wellness. I am 35 years old, 6 ft, 180 lbs. I am very healthy. I eat tons of veggies, i don't do drugs, I drink rarely (socially a few times a year).
The specialists continued to rule out specific diseases within their respective line of specialty, but they kept suggesting I rule out more general stuff from my Primary Care Physician. But my primary care doctor would continue to shrug off suggestions I had and tests I requested. The fact that I had researched things on the internet would ensure that he wouldn't want to encourage it. He would shrug off symptoms telling me they were irrelevant or that I just had to deal with them or that its just part of me "getting older" (i'm only 35...). I had asked for basic tests like a metabolic panel or other broad tests to give us somewhere to look and he truly didn't care. He just wanted to send me to a different specialist and have them worry about me.
After 10 months of this I found a new primary care physician. I explain my symptoms to him and he truly listened and cared for the first time since this whole thing started. He listened to my actual problems and the timeline of the events and within one visit he took a bunch of blood and sent off for a host of tests. Within a week of that visit I discovered I had severe Vitamin D deficiency and B12 deficiency. I took vitamin supplements for these two vitamins and within a week I was about 50% better. It took about a month and I was about 80% better and another month and I was 95% better.
The cure to my disease was $20 worth of vitamins that you can buy at a corner market. I was on disability, I actually came close to dying a few times and racked up $150,000+ in medical procedures (luckily I have amazing insurance so it cost me my out of pocket max of $3,500). All of this for what was cured with vitamins and a simple blood test. A single visit from a caring doctor found this problem, but I suffered for a year because I couldn't find a doctor that cared enough to actually listen and take me seriously.
The stickler is this. I wondered about a vitamin problem at the beginning and my original primary care physician told me specifically not to take a multi-vitamin because "it might make things worse". I had also explicitly requested a general vitamin and metabolic panel on my first visit to the emergency room and also on my first visit to the PCP, of which I was denied both times. I even specifically mentioned a vitamin B12 deficiency during my first visit with the PCP, but when he asked why I suspected it and I mentioned that I read about it on the internet and my symptoms matched up, he was determined to convince me that I was wrong and it couldn't be that.
Not only did I effectively lose a year of my life and career and thousands of dollars. But I still might have some lingering permanent effects from this. Nothing like what I went through initially, but still lingering issues nonetheless.
The lack of compassion or care in the medical community astounded me. I have been very healthy my whole life and haven't had to deal with a lot of doctors. I always looked up to them as intelligent and respectable people. But this experience really gave me a more cynical experience of them. I realize they are just shooting from the hip and guessing as much as anyone else. Yes they went to medical school and have that knowledge to fall back on, but they are still just guessing. They just want to get you out the door, just like when you have someone come into your office to talk about something. You want to make that person happy, but you also just want to get them to move on and stop bothering you. Most doctors have this same approach. You are a customer, and most doctors don't truly care about you more than that. They don't see you as a person with a life, who may actually die from these decisions you are making or make have serious repercussions (like taking disability off work or suffering daily).
Yes, i'm American. So this is the American medical system I am talking about. But I doubt it's really that much different elsewhere in the world (minus the outrageous prices).
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 into researching what's going on in my own body, I will know more about my body than they do. The fact that I found another subject more interesting for my graduate degree doesn't mean I'm incapable of learning what they did, from first principles if necessary.
I get why they're tired of having to address everything someone says they found on the internet, but we're not all idiots out here.
You researched the internet for a whole year but never found out that you can just pay someone like Private MD Labs [0] a hundred bucks and get this done yourself?
Sorry, but I'm skeptical.
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.
I've continued taking magnesium (a little bit) as it seems recommended when taking a lot of D3 as well to avoid issues, though I haven't researched it well enough to tell if that's actually really backed up by strong evidence. I'm staying well under the recommended daily maximum intake for supplements so I think I'm ok. I'll probably keep taking it for a month or two, then stop and see if anything seems to go wrong.
Also, magnesium deficiency can explain twitching, but a large part of my symptoms have been numbness and weird sensations, which I don't believe is something that magnesium deficiency would explain.
Sometimes bad things happen to good people, through no fault of their own.
I mean, rich fat cats get debt forgiveness when things don't work out for them.
Hospital execs -> a racket, but hospitals are being bought up by PE firms rn so I'd say you probably want to include portfolio managers
Doctors -> in general probably not. I've met some physicians that have made me feel sour about them in general, but even with FFS they're not benefiting nearly as much as hospital suppliers and insurance companies. Specialists definitely receive a boost, but this is like saying L7+ at FAANG is representative of SWEs as a whole. Factor in med school, residencies, and fellowships required to enter specialties, and there are also a lot of earning years lost. We should really be encouraging more students to go into medicine in spite of this, which would improve care by reducing the number of pts each physician needs to serve[^1].
[^1]: Additional context. https://www.theatlantic.com/ideas/archive/2022/02/why-does-t...
This sets it in conflict with other approaches like dying at home or euthanasia.
It’s basically euthanasia through negligence, as it’s more culturally acceptable for the elderly to die of dehydration than drugs.
When I heard my mother had fallen down and was in a rehab center, I of course expected her to be being taken care of, healing up, and getting physical therapy. Instead she was emaciated and barely conscious, unable to talk, appeared to be dying, but no IVs or monitors or anything. I asked why she wasn't in the hospital and they wouldn't answer me. At all. Wouldn't tell me anything, despite that I had the Power Of Attorney signed by her in my hand.
It took 3 full days before someone showed up who had the authority to talk to me. Then I found out what had happened. She had indeed fallen and had been in the hospital but had been declining. Her tests had came back positive for cancer again. So she had signed out of the hospital and signed up for palliative/hospice care at the rehab place; DNR etc. It all made sense once it was finally explained. It matched with what we had talked about years before.
But for a few days there, you can bet I was upset. In truth, the nurses there were wonderful and were doing the best they could to make her comfortable as she died. I'm thankful for them.
But not only was it not at all what was expected (fell down and damaged her leg, now in rehabilitation), they also wouldn't explain at all. There's also the side effect that the family member may be a lot older and sicker than the visitor remembers and expected.
And there's also the communication factor at the family level. People find it hard to talk about that stuff to their family members, so they often don't. They might be hearing it for the first time from hospital or hospice personnel. If they can even get those people to talk to them.
I understand why it's tough for the nurses too, to see someone encountering that, and have to talk to them and refuse to tell them anything.
The whole way we handle situations like that is a mess, for everyone involved.
You had authority (poa) but may have been seen as abdicating responsibility.
Ideas for folks who want to be active in parents lives.
Try to live close by. Free childcare when they are healthy. Even just weekly visits in assisted living w kids occasionally is game changing for parents quality of life.
Go big early on accessibility at home. Grab bars, walk in showers , shower bench etc etc . They will get used eventually.
Same with in home support. Try to get a relationship going w someone or agency early while parents have agency. One day a week, pay for something pt even etc. Can take going through a few to find a fit - some will be horrible and just after discharge not a great time to be sorting this all out. Just being in system for support can be a big win on things like hospital discharge.
Lots of challenges in all of this, but societal factors (living far away, work life balance etc) are a part of this, not just medical system.
With Christmas coming up this must be a very hard time for you, hang in there.
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 innovations, eg: Daraloutamide isn't available via NHS for PC so you are out of luck if you cannot tolerate the only available option there ( enzalutamide). I personally know family in UK who have Cardiovascular events on Enzalutamide but can't access Darolutamide because it isn't available via NHS.
There are also a wider variety of clinical trail options in USA compared to UK when you run out of SOC options. you can check here https://clinicaltrials.gov/ to see which country has the most research going on when you get to that stage.
I urge you to do major research your options because its literally life and death. Seek out experts who can make this decision for you based on available options. Imagine losing years of your life because you made a country decision based on generic internet comments :/ .
1. https://www.frontiersin.org/articles/10.3389/fphar.2022.9559...
https://www.ajmc.com/view/nice-rejects-provenge-says-treatme...
It was apparently available under some clinical trial but that trial wasn't recruiting at that point.
I think the GP meant NL as in the Netherlands.
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 good insurances are tied to.
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.
Thanks to my employer, my wife and I have amazing insurance in the US that covers a ton. However even so, she chooses to fly back to Korea for healthcare. I didn’t understand it at first, but then I witnessed the Korean healthcare system in action and I’m an convert now.
Here in the US, you get sent to many different places for every procedure ranging from the initial doctor consult to getting blood drawn to getting an X-ray etc.ep etc., all punctuated by waiting.
In Korea, she went to one doctor and everything was handled on the same day in by the same doctor, or at least within the same building. A process that would take weeks or even months in the American system might take a few days or a week or two in Korea.
It's not for everybody though, it can be a bit impersonal somewhat due to its hyper-efficiencies, but for me I found that just fine.
And the recent era is not pretty (diminishing healthcare in lots of places .. saying that as a French, covid wiping a lot of professional out of the field).
We can do a lot better, focus and resources must pour where it's important.
The hospice people were absolute angels as to how they handled him and his last months. Truly the most compassionate people work in these places and it was good to have at least that in his dying days.
I am sorry for your loss and the experience you've had with your dad.
I take comfort that my father's wishes were to spend his final few months at home and die there. It took a herculean effort on behalf of all of us to pull it off, pulling 24 hour bedside shifts for months took a toll. But we all have zero regrets about it, and despite the grief, was a very beautiful way to honor and support him.
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.
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
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 service and home care didn't show up. Had to do that several times but eventually doctors and home care got tired of getting yelled at (by me and by whomever at the hospital system they reported too, because, ER staff was unhappy) that home care and doctors visits were much more regular.
Sadly 94 with a foot ulcer only ends one way and in the hospital post-amputation doctors were deflecting responsibility for his ongoing care and basically leaving him on a post-op ward with minimal PT/OT and extremely limited interaction due to COVID restrictions. A JACO complaint resulted in a meeting at the hospital with about 16 doctors in attendance. I started the conversation by telling them "Your inaction is killing my grandfather and before we leave here today we will find a solution because I will not allow you to murder him". My aunt (who was there) described me as "a bit much" but within 24 hours he was moved home with appropriate support, multiple PT/OT daily, 24-hour home care, nursing visits, etc.
Sadly 94 with an amputation only ends one way and within 6 months he reached a point where we knew the end was near. We enrolled in a home hospice program but the end came quickly. Hospice, despite promising 24/7 coverage and promising quick response times, failed in the end and despite repeated calls over his final day nobody showed up. Eventually, only threatening to call 911 (because we were desperate) and saying we would tell 911 that hospice care was non-responsive resulted in a nursing dispatch, but, it was too late.
The American health care system seems to require one to stand up and scream sometimes to get help. Doctors, nurses, etc are individually great people but they all have their own myopic opinions of the situation which my grandfather was not the center of. Getting things done requires reorienting them and making them realize you will not settle and that medical opinion is both only an opinion but also only one part of a large equation. (Yes, perhaps, PT/OT techs in Dr X's experience are better in sub-acute rehab facility X, definitely they will do 3x daily instead of 2x daily, but being completely isolated (no family visits due to COVID) is a completely dominating concern and not even a medical one.)
Every regret I have from that year is from not pushing people harder, everything I'm proud of is from when I did.
Sending a nurse to do a wound check daily is much cheaper than ambulatory travel to an ER (or even doctors office).
Moving him to our house was cheaper than a nursing facility.
Hospice was obviously far cheaper than any continuing care.
You are referencing a pernicious myth - a classic selection bias. For the majority of illnesses we don’t know whether someone is near the end of their life or not. We all “know” that people tend to have expensive care just before they die, but the selection bias occurs because we ignore the counterfactual where people have expensive care and then go on to live for many years afterwards. Edit: A study found “most people who die aren’t expected to, and many people who are expected to die don’t. In particular, less than 10 percent of those who die within 12 months had a predicted mortality above 50 percent. And if beneficiaries are ranked by their predicted mortality, the group with a high chance of dying accounted for only 5 percent of total Medicare spending, and among them about half survived in any case, perhaps in part due to the health care they received. As the study's authors conclude, ‘These findings suggest that a focus on end-of-life spending is not, by itself, a useful way to identify wasteful spending.’” https://archive.ph/gUzzO
Also “total spending on end-of-life care is only 9 percent of the total cost of health care”. Chronic condition are where costs lie.
And US healthcare costs have not really risen: https://randomcriticalanalysis.com/why-conventional-wisdom-o...
That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste. But this interpretation presumes knowledge of who will die and when. Here we analyze how spending is distributed by predicted mortality, based on a machine-learning model of annual mortality risk built using Medicare claims. Death is highly unpredictable. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%. The simple fact that we spend more on the sick-both on those who recover and those who die-accounts for 30 to 50% of the concentration of spending on the dead. Our results suggest that spending on the ex post dead does not necessarily mean that we spend on the ex ante "hopeless."This is the issue this paragraph is dedicated to refuting. But this thread is not about this issue. So it’s largely just an irrelevant passage. However;
> Here we analyze how spending is distributed by predicted mortality, based on a machine-learning model of annual mortality risk built using Medicare claims. Death is highly unpredictable. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%.
This quote is dumb. As a data scientist I give it an F. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%? Ok but what proportion of individuals is that? Is it 10% in which case they’re underrepresented? 5% in which case they’re average? Or .1% in which case they’re pulling in 50x their share? If we pull the criteria down to 40% what happens? What share of people who died are above 50% in the model? It’s a quote that is basically impossible to make use of on its face but is being used to push a very specific narrative.
Sometimes know, but, admitting it is harder than we want to believe.
I can pull up statistics on a foot ulcer in a geriatric patient and point out that it usually (>50%) leads to amputation and that following an amputation most patients don't live a year and get called an asshole. I realized fairly quickly that the right course was to fight to make the next 12 months - 2 years "as good as possible." Organizing care and finances (dying is expensive).
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.
It's awful to even think about it, let alone articulate it, but, that year was terribly difficult on me and even worse for my mother. My grandfather was a proud man and having people need to help him with every aspect of daily living (I'll leave the details to what I suspect is not your imagination) was undignified. By the time he passed it was obvious there was no quality of life left and death was a mercy. It doesn't have to only be a mercy for the patient.
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".
https://news.ycombinator.com/item?id=34044230
and an anecdote I don't care to rewrite https://news.ycombinator.com/item?id=34047842
To call it a _system_ is generous because it implies a goal-oriented design where each component fits together intentionally. This in no way describes healthcare in the U.S. If you have unlimited time, money, access, and medical knowledge, you can find ways to put together what you need. But lack one or more of those elements, and good luck to you.
When my Dad was on his deathbed at home with lung cancer my Mom was in charge of administering the morphine dropper on a schedule like she was shown to do by the hospice nurse. I was younger then, not dealing with it well so was self-medicating & was very out of it. No appropriate situational awareness at all.
The next morning after he was dead I was cleaning up & thought it odd that his morphine bottle was still half full but didn't think much of it. His body didn't look quite right either but being the first dead body I'd ever seen how would I know something was off? Decades later I learned his hands wouldn't go together because when he had died he was pushing her off him with all his strength while she was suffocating him. So on top of not getting his morphine he had her probably on top of his distended belly with all that pain exceeding what was already unimaginable, suffocating him.
Before my Mom died she asked me if he'd molested me & I was surprised. I told her no, of course not, & soon afterward she started mismanaging her diabetes just a bit more than usual. She died of a heart attack a few months later- presumably from the diabetes. Though I think it was a suicide after realizing what she had done to Dad.
https://www.neuroscience.ox.ac.uk/research-directory/mark-st...
I was lucky. They got detected early and hadn’t metastasized.
But holy hell was radiation treatment terrible. When I had my first round of chemo to ready me for my first round of radiation, it was easy to “ignore” the chemo. I can’t find the comment now, but they basically state “You get up, you go in, you get sick, you go home, rinse and repeat”. It sucked, but I could muscle through it. The radiation treatments? Damn. By the time the burning sensation in my neck and face got to a point I could ignore it, it was time to go in for another session. By the 3rd session of the 3rd week, my oncologist prescribed me sleeping and high dosage pain pills. My pharmacist didn’t want to refill my pain meds the 3rd time. Thought I had a pill doc that was letting me abuse them.
But all through the pain and the uncertainty, the thing that affected me the most was - I really learned who, in my social circle, I could count on. Made me realize that most of my social circle is acquaintances not friends. Not loved ones.
So cancer really opened my eyes to human connection. Now I just gotta figure out how to do it :)
The First time you experience this is extremely painful and disorienting. Only advantage being you come out way stronger on the other side.
I hope things are better for you now and hope and pray nothing but the best comes your way hereafter. Have a good one brother.
So yeah - fuck cancer.
Fuck cancer.
Spot on.
This may be referring to immunology, which is promising, but only keeps it at bay and needs continuing therapy. It becomes a chronic disease, which is preferable to a uncontrollable disease.
I buried an uncle a few months ago, he had a very nasty case of cancer and was in so much pain that we were all so grateful that at least here in NL there was the option to throw in the towel. He was a super nice man and I regret not having more contact with him in my life (my family is rather fragmented). But so much suffering is just too much to inflict on anybody. I can't seem to get through six months right now without a funeral and given the age of my extended family members that trend is likely not going to change for a long time to come.
He was a real fighter, and had several goals - to see his son turn 21, to get to some big rowing champs, etc.
He achieved some of those goals, and missed out on others. But as his disease wore on, he became so disabled and in so much pain that life was a true misery. Not just for him but for his loved ones, who were also his carers.
His last few months were not good for anyone and both my wife and I decided we would rather shuffle off than extend our lives in a similar situation.
The past few years seem to have been really hard on people, even those without COVID. It seems the number of deaths in my circle too has accelerated -- especially among the "old but still should have some life left in 'em" cohort.
However! Happily, she is alive, well, and living every day like it’s her last at ~31 now. Been in remission for at least 10-15 years or something, I’m not sure the exact specifics.
But what a horrible, arbitrary curse to put on a 2 year old child. Her family lived with ours for a number of years and I vividly remember her beautiful curly red hair falling out repeatedly. I also remember the “fuse import” (no clue if that’s the actual name) buried in her chest. And all of this happening while she’s learning to walk, talk, and progress through elementary school.
Cancer sucks.
Turns out those symptoms were hiding breast cancer, which metasticized in 2 years, the chemo symptoms because too bad and so she had to stop, and now she's gone.
She was 59.
When I went to her house to tend to her dogs, she had been looking at retirement and hospice care for her "live out my last days" cancer life basically next door to me (she lives in a different state).
Fuck cancer.
She was incredibly stubborn when it came to medical issues and had been experiencing some pain in her side that I had been stressing for her to get seen for. She went to urgent care and they did nothing, bolstering her opinion that it was worthless being seen for it.
The cough was a dry cough that was not very frequent but the older women in her periphery were very concerned about it. I didn’t think much of it, just a dry cough. The women in the other hand would say things like ‘I really don’t like that cough’ with a concerned face. I don’t know if they had an internalized correlation or it was just a sense of something wrong. It turns out that this is a fairly common symptom.
The medical treatment funnel gets very myopic treating the most present thing first, and often misses other problems going on at the same time. With my Dad we think the doctors were very focused on some other health issues that were complications from a knee replacement he had done about 5 years before.
The "you can only come in for a visit for one problem at a time" broken insurance system would have had him coming in all day, every day for visits, so he just went for what bothered him the most. Turns out his lung cancer wasn't his worst problem until it was.
please be sure that you have a will or an advanced directive in place. PLEASE do this. Have that difficult conversation about what steps you want taken to save your life. Do you want chest compressions? Do you want a tube inserted in your airway to assist you in breathing? Do you want heroic measures to be taken even if they may not save your live? Do you want to be placed on a mechanical ventilator?
The reality is that many people don't have these conversations and then something happens to them and there is legally no way to abide by their spoken wishes. Your wishes need to be written down. Contact an attorney. Put an advanced directive on file. Your local hospital may be able to help. In many states, there are "out of hospital DNR" forms that we MUST have in order to terminate resuscitation efforts should it come to that. In other words, if you collapse, someone calls 911, and there is no paperwork, we are legally required to start life saving resuscitation measures and continue them.
without legal documentation, things get really sticky, and it gets even worse if family is involved. Like someone else noted, the "daughter from California syndrome" is very real.
the difficult conversations about your end of life issues may be the most important ones you ever have.
Not accurate. It will often go into probate court or become property of the state.
> A will is almost next to useless.
False.
According to her oncologist we cannot know as the stats are always made in the past and they don't reflect recent medical advances like the to be scheduled next week xray scalpel surgery.
fuck cancer.
All the best to you and your wife.
As a society, we have the option of greatly reducing cancer deaths whenever we so choose. Let’s do that rather than raging against something that feels nothing.
It has been over 15 years since the Last Lecture and we still have done little for pancreatic cancer, for example.
According to Craig Venter, early detection is what we need to eliminate cancer: https://youtu.be/iUqgTYbkHP8?t=15m37s
No one is saying it’s going to be easy but we’re going to make a lot of progress over the next 25 years. Let’s decide to do more sooner.
The issue with current early detection methods is that they tend to cause more harm than good at population scale. Between getting dosed with radiation in the process, false positives causing at best psychological trauma if not unnecessary treatment, and it's hard to tell if you just detected a cancer you'll die with instead of dying of - and thus another form of unnecessary treatment.
The blood tests remove some, but not all of that. Yes, for any arbitrary person it might be lifesaving, just like current methods. But at population scale it's not a panacea.
Yet we really aren't doing an awful lot about those things.
Imagine for example if we had an obesity tax - everyone obese must pay 30% of their earnings into a Medicare fund. Sure it would be unpopular, but obesity would very quickly be solved, and cancer rates would plummet.
Imagine for example if we taxed the shareholders of CocaCola instead, they're the ones who got wealthy from obesity. And before you say "it was the consumer's choice", what was CocaCola's $4b/year advertising spend for, then?
That gives the companies an incentive to do the research ahead of time to minimize damages.
If raising the price of Coke is the goal, I believe there are already proposals for a sugar tax in various jurisdictions.
Let’s tax the hell out of processed foods so they become at least on par with the price of healthy food.
It’s very tricky since taxes like that will hurt low income households the most.
Another option: ban advertising of heavily processed food, and while we’re at it let’s also ban advertising prescription drugs (as is the case already in Canada)
Isn't processed food already more expensive than "healthy"? E.g. precut fries vs potatoes. Etc.
What is cheaper to buy processed?
But walking into a typical US grocery store feels like a place where cheap, quick, processed foods are the focus with healthy food being secondary (perhaps because they’re optimizing their store layouts in response to consumer demand for sh*t food). Rarely is healthy food promoted on isle endcaps.
I do 100% of my day to day shopping at a (very expensive) health food store for this sole reason. At the health food store, they don’t stock soda, chips, etc (or if they do it’s locally made, organic, etc… “healthy” junk food). You can’t buy things like Oreos or Coke because they simply don’t carry it.
For me, removing unhealthy options when grocery shopping led to 40+ lbs of weight loss - with no other lifestyle changes and no additional exercise over 2 years.
When I make the occasional visit to a normal grocery store, I’m always in awe at how much real estate “bad” food gets. It’s the majority of the store.
All of this is to say, another place to look at are grocery stores themselves and the food they decide to carry and promote in their stores, including the layout of the stores, % real estate given to crap food vs. healthy food, etc.
Processing is a chance to use seconds - damaged or ugly potatoes that nobody would buy, and it packs more product into less space and with an easier storage mechanism (freeze) than properly packing to keep it fresh. Employees can throw boxes of frozen food onto a belt where they have to gently place boxes of fresh food.
Even with a well run shipping company and no problems you'll have a fair bit of spoilage and it means that every box is at risk of full rot (a bad apple...) and needs a human to sort through and pull it out. There are buyers of last resort at every stage of the journey who will take freshly damaged produce for immediate usage but they're often soup kitchens who can barely afford to pay.
Most of the obese people are like that not because they choose, but because they cannot do better.
People were cooking with lard for 1000s of years until the US decided fat is bad and people started substituting fat with sugar because when you remove fat, you remove flavour.
There is a great deal wrong with very high fat diets, the issue is there’s also a lot wrong with very high carb diets.
Funnily enough not from obesity or heart disease.
They died from violence, starvation, infections, plagues, travel, etc.
Fats were not a cause.
Not sure where the comment I’m replying to, and onwards, ever mentions cancer.
Lol
The history of coronary syndromes and sudden death, and apoplexy or stroke, goes back to antiquity and has been thoroughly treated by historians and experts from many disciplines. By the beginning of the twentieth century, a heart attack with myocardial infarction was well known to cause death, but comprehension of it as a syndrome that one might survive was much delayed.
…
Part of the historical delay and confusion in recognizing heart attacks apparently lay in the Greek word, kardialgia, which could mean either abdominal or precordial pain. Biblical and Talmudic references abound, however, about chest pain of a life-threatening nature, and Hippocrates mentions sudden death related to an episode of chest distress (Leibowitz 1970).
Leibowitz points out that the great Italian anatomist Morgagni failed to tie it all together, but nevertheless clearly described in 1761 the late pathology found in survivors of myocardial infarction in his well-known dictum: “The force of the heart decreases so much more in proportion as the greater number of its parts becomes tendonous instead of being fleshy” (ibid., 4). http://www.epi.umn.edu/cvdepi/essay/history-of-heart-attack-...
Saying it was or wasn’t a leading cause of death overall is quite arbitrary, though it was at a minimum a common cause of death back then.
Given a large enough population you would still see very very rare cases of extreme age but you are something like 1,000 times more likely to live to 115 today than you where back in 1,000 AD. Combined with a smaller population and it’s likely nobody live to 115 until quite recently.
Anecdotally, I know people with the same wealth as me or even wealthier who eat copious amounts of sweets in all forms and are also obese. Some people just don't have control.
But yes, proper education regarding nutrition is something that is sorely needed as most people are unaware of the dangers of eating sugar rich and calorie rich foods in large amounts.
No one is to blame for getting cancer.
The same for cancer's from nitrous oxides from car exhausts. The same for particulate pollution. Same for microplastics. The same for all the kinds of pollution we don't yet know about or measure.
A similar example is with early detection. The data show that at population scale a lot of early detection efforts cause more harm than good. The problem is that any arbitrary person might have their life saved by said early detection. It's impossible to know who those arbitrary people will be.
15 years ago Randy Pausch was also fit a year before he died.
So, instead of blaming people for poor choices imagine if 16 years ago, when the US National Debt was a mere $9 trillion, if enough people were inspired that on our way to $31 trillion in debt, we spent a few trillion of that on cancer research.
Certainly, I agree that we can be doing more.
I wish people would use "You are not alone" or "We also have suffered due to cancer. It is awful. You have our empathy and we offer our condolences." or something else instead of the shorthand "Fuck cancer". But I'll accept "Fuck cancer" too.
I learned two things over the years : 1. everyone “knows something” about cancer. 2. I can’t control culture and language.
To be honest though, many years later… I still haven’t found a single phrase anyone can say that doesn’t make me think, “I wish we could just not be having this conversation.” I remind myself that there are no words but people are still trying.
When we cure cancer, I'll back down. Until then, in memory of the folks I have lost and with empathy to those experiencing it or watching loved ones experience it, fuck cancer.
https://www.statnews.com/2022/06/01/novel-genetic-experiment...
I hate cancer. Instead of building weapons of war, we should be building tools to help completely control it, for all cancers, for all people, so it is no longer this UNKNOWN thing that keeps us up through the night, wondering, worrying when our time will be.
How is this not profiteering?
I'd like to see there being one price per drug with a small quantity modifier for bulk purchases.
Hope a miracle will be, really.
From a French young computer scientist.
Also consider that all creatures before us went away in this way as well, and all will. Even if we attain superhuman lifespans, one day something will put an end to our lives.
Finally, consider being curious about death itself. There are many strange and interesting features of the death of a sapient being.
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 finality of death. They believe and live towards life after death, believing in either some sort of continuum of consciousness or of their own consciousness as the process of an immaterial soul that will live after the body stops.
Stories of death and near-death are full of the unexplained and perhaps unexplainable.
From a western materialist perspective alone, death is fascinating if you look at it. Where does our consciousness arise from? It must be from the brain, right? And it is a sort of illusion, since we don't have individual souls. The perception of consciousness is a labyrinth of mirrors, self references.
Yet, the same machinery for perceiving ourselves is also used to perceive others. We are constantly simulating and imitating one another. We're even working to modify and live up to others' images of us.
So the patterns of the consciousness of any individual are actually distributed, holographically, through a community of brains.
This being known.... Who or what died when one brain dropped off the grid? (For more in this direction, read Hofstadter).
Even more simply, what changes take place in a dying person? What is the difference between a person who embraces death and a person who dies in fear? Is it possible to be happy while dying? What would it take to live a life that ends happily?
This is what I mean when I say that death is worth being curious about.
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.
That possibility makes sense, but I don't really know enough about the universe to be certain.
Here's where the idea of life after death really breaks down for me: If you have a degenerative disease when do you get to this afterlife? Some people have effectively died long before they die, in terms of mind. If you see this as a process that is entirely physical it makes sense, it's sad but it makes sense. If you think there's something non-physical there then it poses some really hard questions: did they die already? why do personality changes happen if who a person is is contained in some non-physical thing? when they do die does the degenerated form go to the afterlife or the whole, and if its the whole then what happened to the person that was degenerative? Now throw in non-human life where we have a continuum of brain complexity down to nothing and ask similar questions - it just makes no sense. Unless you hold humans above other animals, which I find really distasteful and short sighted. Really though, if you try to explain all this you're just explaining away needless complexity to justify wishing for something that seems very unlikely.
A christian chap I used to live with told me that after we die our soul goes to heaven but its just our consciousness and not our personality, and we spend the rest of all time praising god. Well, not me, I was going to hell for not believing. Honestly, of the things he described, not sure which sounded better, but a materialistic death definitely trumps either of those options.
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.
Beautifully said. Exactly matches my own perception. The width of this distribution is helped by conversations shared with people, books read together, movies watched, games played. "Common" memories. I think the momentum to write, to make art generally is driven by this instinctive intuition, desire to extend the life of one's consciousness in the community. We really don't die until we're completely forgotten.
Was going to ask for any reading recommendation, but noticed the Hofstadter right there. Thank you!
You die, you’re gone, and that’s fine. It does not need to be spectacular. Implying otherwise is just about as inflammatory as calling the other camp’s beliefs nonsense imo.
I listed some things that people believe, and I listed some things to think about.
If you can point to where I made any inflammatory claims, that would help me communicate better in the future. Thanks.
Be at peace, Mark.[0]
[0] https://www.neuroscience.ox.ac.uk/research-directory/mark-st...
> These rules were written and voted on collaboratively, by the students and mentees of Professor Mark Stokes, who inspired this piece.
1. Encourage Critique But Not Competition
2. Model “Failure” and Celebrate Honesty
3. Be Approachable
4. Facilitate Communication and Ensure There Are Minimal Barriers to Asking Questions
5. A Supportive Lab Is a Social Lab
6. Give Timely (and Constructive) Feedback
7. Respect Others' Time and Expertise
8. Have Career Conversations That Cover Both Academic and Nonacademic Paths, Prioritizing Individuals' Career Goals and Aspirations
9. Keep Track of, Suggest, and Create (Tailored) Opportunities for Trainees
10. Be An Advocate
I'll be doing my part.
I know you need to be your own advocate in the healthcare system but he has no concept and I don't know enough to be able to know if he's getting the right care. In general I trust the healthcare system. But I want to know that the doctors considered x, y and z and didn't choose because of such and such reasons even if those reasons are "we don't have the facilities or experience for those treatments"
But what we get are perfunctory stat reports and then sudden announcements that they are going to be doing something in the next 4 hours. The communication is worse than any software project I have ever been on.
I need to invest time in learning about his illness without getting a doctorate but don't have any doctor friends to even point me in the right direction.
A few years ago while casually wandering YouTube I stumbled across a video [1] of a young girl explaining that her cancer is at a point of no return.
Her name is Sophia Gall and she's from Australia.
Apparently, she had cancer previously and underwent treatment. Unfortunately the cancer recurred.
In the video she's pretty much scared, crying and hopeless.
She did mention she'll be traveling around. Eventually, there were videos of her from Paris and a few other places. She seemed pretty cheerful then.
Months — maybe a year — later I remembered her and seeked her YouTube channel. From the comments on her latest video that was released several months before, I learnt that she passed away.
In her last few videos, apart from the physical pain she was surprisingly composed. Like, she had accepted her fate.
I don't know why I said all that here. That whole thing about Sophia had thoroughly moved me.
[1] https://youtu.be/yWiIyvQaNiQ
(While searching for her video, I discovered that there's a whole bunch of youtubers with cancer.)
I have learned for myself that life, existence, doesn't end at death. Our choices matter, and there is hope for good things to come, depending on our further choices. More at my web site (in profile, nothing for sale, tech-simple site).
(ps: the good things to come can include family ties and significant learning & growth: better, I would say, than this life, again depending on our choices.)
https://dailystoic.com/memento-mori/
And other "bad things" with negative visualization.
I think it takes a lot of courage to face your last tweet...
Now facing open-heart surgery with all its risks and complications sometime soon. I knew that was always a possibility due to a congenital heart defect but five years ago it seemed unlikely and suddenly in the last 18 months it became a clear eventuality.
Trying to reframe that in the most positive way possible in my mind and also stop blaming myself for not taking better care of myself. It’s hard.
Of course I will need to become a better swimmer.
The most important thing for me now is to preserve my health for the next 30 years so I can see my kids grow up and hopefully have their own children. Seems exercise, diet, and sleep are things I need to prioritize.
So my wife and I decided to just be “hybrid digital nomads” flying across the US with a few weeks in Mexico and Canada so we could be in US time zones. We will be living in Florida from September through mid March and traveling the other six months while our place is professionally managed by a property manager.
We sold our cars, threw almost everything we owned away that wouldn’t fit in three suitcases and rented our house out. We will sell it mid 2024.
We were going to do that at least two years. But, I was using my stock vests to offset the costs and well you know how stock is doing these days.
Next year we will add a set fee to partially offset some of those expenses like a real apartment does.
Then again, I am in the line of work best described as willingly agreeing to put an airplane together as I fall out of the sky. Not a whole lot of downtime in my days.
Whet line of work are you in exactly, if you don’t mind sharing?
The main reason I've been servicing airplane engines in flight for my employer is because on my own I already had "to put an airplane together as I fall out of the sky."
* book "Staring into the Sun" * book "How we Die"
Eliding my 2c on these books -- it's your 2c that matters.
LLAP
The way I have reconciled this is through accepting that I have already died, thus every day is a gift.
This was supposed to write resuscitate.
Quotes like the above, ideas, feelings about meaning, thoughts about my wife and kids all were completely absent. I just felt blank and completely alone. No words or concepts or language could penetrate that feeling.
To end on a positive note, I still find it less terrifying than the alternative, which is living forever.
As a religious person this is actually like the most negative note imaginable for me. I mean, sure, I'll grant you life after death is "terrifying" in a "fear of the unknown" sense, but I would definitely prefer seeing deceased loved ones again and continuing to learn and progress after death vs. ceasing to exist.
Would they still feel that way if they had youthful energy and a more elastic mind, I wonder? Hard to tell. I myself hope I'm more like Donald Knuth in my old age - still curious and learning and progressing.
She was very peaceful, she died at 86.
Seeing your loved ones is great. Exhausting the total combination of <1hr long conversations with them over an infinite amount of time, not so much. What do you even do after that? You've spoken with them about everything you can express with english words.
Do you continue to make up new concepts forever to keep yourself entertained?
Well assuming everyone is conscious in the next life and can interact with each other, then that would lead one to assume next life has technology at least as good as ours, if not better since it collectively contains the sum knowledge of every human who has ever lived. Unless we are just disembodied consciousnesses that can't interact with matter anymore. In any case though, the mere existence of an afterlife in which you can visit with deceased loved ones is a strong sign there is a benevolent God over all and I'm sure said God would help solve the boredom problem. So I'm not terribly worried either way. Cease to exist = can't worry about it. Continue to be conscious = won't worry about it.
Great idea. It will probably take a while for me to internalize it but I really like what you're saying.
Heu quantus est noster dolor
"You who remember our passing, I beg you to be what we are, you will be. We were once what you are
Alas, how great is our grief"
"We were what you are; But the time will come, And it will come to you swiftly, when ye shall be what we are."
Like the dance of death and the triumph of death, the motif is emblematic of the medieval admonition memento mori. Simultaneous depiction of the topoi is common, for example in Francesco Traini's mid-fourteenth-century fresco Triumph of Death, which depicts the three living and the three dead. The legend was also integrated in the Dance of Death by Kientzheim.
A fresco from the Isefjord workshop in the church of Tuse (Denmark) from the 15th century shows three mounted kings on the hunt, who are met by three dead kings from whom maggots and worms escape. Each of them is assigned a banner. On the first dead man's banner is written: "Vos qui transitis n(os)t(r)i me(m)ores rogo sitis" (You who are passing by, I beg you: Remember us), on the second: "Quod sumus hoc eritis" (What we are now, you shall become one day) and on the third: "Fuimus aliquando quod estis" (We were once what you are now). Above their heads one reads: "Heu qua(n)tus est noster dolor" (Oh, how great is our pain)."
https://old.reddit.com/r/latin/comments/n8dzuo/quod_sumus_ho...
Near death experiences can change your whole perspective. When I was young and single, I did all kinds of crazy things that could easily have ended me. Once I got married and had children, I definitely became much more conservative in the personal risks I was willing to take because it wasn't just about me anymore.
Tomorrow is promised to no one, but each of us can do things to minimize risk.
I've lost count of how many "ordinary" infections I've lived through thanks to antibiotics. One would have for sure killed me. A puncture wound on the bottom of my foot in a dirty river in the south.
We're not even 100 years into having antibiotics. A species just getting started tbh. I wonder what will come next that is similarly "magical" to antibiotics.
I'm getting something for Christmas that no one should want: an inheritance.
I love you mom, and I miss you. Don't worry, my brother and I are picking up the pieces, one day at a time.