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From hacker to hospice in seven weeks (benjamincburns.com)
618 points by benjamincburns 1024 days ago | hide | past | web | 221 comments | favorite



I would like to take this opportunity to remind our fellow hackers to be aware of changes within your own body. Being alert to physical and/or mental changes and relaying concerns to your doctor is one the best methods for overcoming several diseases and cancers.

As a personal testimony, about ten months ago user ifktaotc made a very helpful comment regarding testicular cancer and it's prevalance among young men warning that it was likely that at least some of those reading his comment will have it or already do so. https://news.ycombinator.com/item?id=7120102

After reading I checked myself and found what was confirmed a few days later to be a cancerous mass.

I am very fortunate to be alerted to the fact very early as aside from some initial surgery it hasn't affected the rest of my life. Even though the odds of survival overall are high, not knowing it earlier would have required much more intense and painful treatment (chemo, RPLND).


Glad you're doing well saboot. I just had to say I find it pretty amazing that a comment online can have this sort of effect on someone's life!


I have chronic Orchitis (I find the symptoms quite funny having been an avid reader of Vis) anyway, you can imagine that this has led to a lot of testicular examination (har har har)

When my testical swelled up I was quite frightened. It is essential that you go to the doctor and get checked - that's obvious, but to calm yourself down you can use a bright torch to check to see if you have any part of it which is not transparent.

A soft pink glow with some blood vessels is reassuring (go to the doc anyway as lumps are not normal and need a bit of a look see). If you observe any dark patches then this is more of a concern and you need to move fast with the knowledge that there is good treatment available and you have caught it earlier than many would.

I find shining a bright light through much easier than squeezing and feeling - but it's worth doing both.


As many HN readers don't have children, they may be inclined to see Nicola's pregnancy as a tragedy of some kind. Truly it is sad that this child will live without its father, but it's also a gift to the world -- a bit of Steven, living on. It will be a continuing gift to Steven's loved ones to have a permanent, living piece of Steven, a continuance of himself after he slips into the eons. When you get that kind of gift, as sad as everything else around it may be, it almost feels like cheating.

I just feel like this is a perspective that may not be immediately realized among groups of people that don't have their own children. I know before I had children, I would have only viewed it as tragic.


Thanks for saying this. I won't attempt to comment on how Nicola feels, because frankly I don't know. However everything I've heard second hand has told me that what you describe is very much the sentiment of the situation.

I hope my words didn't portray the opposite.


As weird as this might sound, having children has given me a significant sense of relief for similar reasons to those outlined in your comment, even though I'm far from a natural parent (but I'm working at it!)

Being a bit of a paranoid and morbid guy at the best of times, reproducing seemed inherently and intrinsically important to me in some hard to quantify way, and I feel so much mentally better for having descendants. I can't really explain it well though and have chalked it up to one of those messy, animalistic "instinct" things.


> As weird as this might sound,

Not necessarily weird - you sound just as self-obsessed as the rest of us.


This is a great thought. I thought of it as a tragedy at first because having and raising a newborn on your own would be terrifying. But as long as she has people to help her and some way to financially support herself a child will be a great thing to have in her life.


I know I'll get downwoted for this, nevertheless ..

I don't know how about Steven and Nicola, however I myself would mind having certain intimate moments shared with general public (e.g. overheard phone conversations, etc ..)

Having sad that, I feel for Steve's and Nicola family. It's always tough.


No need for the preface - it's a fair thing to say.

I hemmed and hawed about whether to post this article at all for this exact reason. In the end I decided that if I was going to post it I should be both respectful and truthful.

I probably could've worded it better. I probably could've added some disclaimer that this is true as far as I remember, but my memory is fallible.

[Edit, as I hit post too soon]: Either way, I tried to be polite about it. This tragedy struck during a crunch time when a lot of us were feeling the need to rally together in order to make the big win. Any married person who chooses to work late on occasion experiences such a phone call.

To be clear, I didn't hear her end of any conversations. There weren't more than two or three of them that I overheard, and I wouldn't have included anything about them if I thought they were terribly personal.

The struggle between work and home life is something I experience myself. It's just another parallel I can't help but think about when trying to make sense of this situation. Not including it felt like I was leaving something important out of the story.


I think you made the right decision. This is a very touching and saddening story, and as you said, it's very hard not to put yourself in his shoes. I think about my family any time I read a story of a loss.

You have made a tribute to what sounds to be a wonderful person and a great friend. You have also helped to raise money for his family, which I'm sure will help---if not just a little bit---to put him at ease knowing that they have support. And you have brought further attention to cancer.

I hate having my personal affairs public, but in a case like this, I'd be happy to have my story known.


I think that you made the right choice, though for purely selfish reasons. This post really made an impact on me and seriously, thank you so much for publishing it exactly as it is. I appreciate it was uncomfortable and I feel horrible for his wife, family and work team, but this story seriously out some important things in perspective for me.

Thank you so much.


I am so sorry to hear this and also so glad you posted it here, Ben. Thank you. We all get so busy in our daily details, it's nice to be reminded what's really important.

Just some quick, well intentioned feedback from someone who has lost almost every important loved one...

Please don't be angry. That may seem like a natural response, but it is wasted output, serving as input into no productive process. Life is not a problem to be solved; it is a gift to be savored, one day at a time.

Have fun doing what you love to do, but don't forget to knock off when it still makes sense today. Then go hug your love one(s). Today will be gone tomorrow and there is no algorithm to bring it back.


Mostly through a long grieving process, I would give slightly different advice, or perhaps the same advice said differently: don't feed anger. Don't hold it.

In my youth, I thought emotions were things to be controlled, suppressed. That was terrible for me. Three years ago a lot of bad things happened more or less at once, and my hyperrationalist suppression of emotion failed me. It was sand castles against a tidal wave.

Now I try to treat emotions like weather. I don't get to pick them; I just get to pick how to respond when they happen. So if somebody is feeling angry, I think that's ok. I'd hate for them to justify it, to sustain it, to make it a habit. There's no sense in nursing a grudge against the world, and I certainly wouldn't want them to let the anger spill over onto those around them. That is definitely a waste. When they feel it, they should feel it. But when it passes, they should let it go.


Thanks so much for this.

For what it's worth, I'm not an angry person. I recognize how useless and distracting anger is. I owe that mostly to my ability to see solutions where other people see problems. However when there are no solutions to be found, and the problem is this large, I can't help but experience this sort of frustration.

That said, the experience of writing this up and witnessing how this story resonates within people has been helpful. When I posted it I had no idea if people would upvote, especially with the obvious/shameless call to action for a donation. Seeing donations come in as a result of this has brought me to tears.

Being faced with such a situation it's impossible not to feel cynical toward the the world. Thanks to everyone here for responding so positively.

And you're so correct that life isn't a problem to be solved. I lose sight of that far too often.


Death is a bad thing. Anger is appropriate. We can probably fix it. If not in time to save ourselves, we might be able to save our children. We need to start now and spend a fortune. People need to stop pretending that it's ok.


I don't want my children to grow up in a world where you have to work at McDonald's for 100 years to afford buying a small house on the outskirts of a city. All because old wealthy people just keep accruing more wealth and never returning it to the cycle of the economy.

When I look at the power structures of the modern world and the control that corporations have over our governments, I don't extrapolate positive changes should the powerful also start living forever.

Death is part of life. People need to stop pretending it's bad. If you feel it is such a bad thing, will you also cure death for every spider, every frog, every crow, every ant, every tree? What do you think will happen then? Or is life only important when it's a human?


I don't want my children to grow up in a world where you have to work at McDonald's for 100 years to afford buying a small house on the outskirts of a city. All because old wealthy people just keep accruing more wealth and never returning it to the cycle of the economy.

The economy doesn't work that way. You and your children are not poorer because Warren Buffett is rich.

Death is part of life.

So are Alzheimer's, cancer, polio, and people with bad vision being eaten by bears. Which of those should we not address?


While the economy isn't zero-sum, resources like land are. Warren Buffett isn't taking money away from people, but I still believe income & other inequality would rise if people lived forever.

I think all of those problems are worth addressing, but I don't think we should be in a mad rush to cure death itself. It is a vital part of returning resources to the cycle of life to be used anew. I think our world would be worse off if humans lived forever, it would be stale and stagnant. Finally, I think we should fix some other problems that our overpopulation and thirst for growth are causing before we try to cement that growth with eternal life.


But you do want them to die?


Yep. I don't have any yet, but should I have offspring, I would expect them to die eventually. Obviously I would hope for a full, rich life before their passing (as I do for myself) but I actually look forward to dying. Not that I want it to happen soon, but I am curious about the experience and I'm not scared of it.

Things come and go all the time. I try not to cling to them. "This too shall pass" can be a very comforting mantra. Value things while they're around and know they won't always be around.


Death is neither good nor bad. All life is terminal. You can't fix it, even if you can prolong it.

The sooner you get this into your head and heart, the better you will live.


Every time I come across this sentiment—that death is natural, and we have to accept it, and so on—the Fable of Dragon-Tyrant[0] comes to mind.

[0] http://www.nickbostrom.com/fable/dragon.html


Its entirely ok to feel anger, just as it is entirely to feel happiness or sadness. There are no right or wrong emotions. The grieving process is a multi-stage process- denial, anger, bargaining, depression, and acceptance and you can go through any emotion at any period in time in whatever order it comes. The only real way to truly get over pain is to go through it- talk about it, feel it, and don't suppress it.


> Please don't be angry. That may seem like a natural response, but it is wasted output, serving as input into no productive process.

No - be angry if that's what you are right now. Be sad, or envious, or bitter. Just try and move past them - don't linger and wallow in them.

I don't care about your tacky, techie-ish analogies. Sometimes you have to allow yourself to feel those 'bad' feelings in order to move past them. And it has nothing to do with productivity.


I here declare, that I disagree.

http://www.nickbostrom.com/fable/dragon.html


I fail to see the relevance of that link to this post.


tldr?


I only skimmed the piece, but it has a self-contained TL;DR at the bottom ("morals").

If I were to make my own abridged TL;DR, it would be "aging is a human tragedy that we can and should fix"


I worry that a victory over aging would be opening a pandora's box on humanity's progress on social change.

It is my personal opinion that a person's opinions of social norms, cultures, and traditions are largely fixed throughout one's lifetimes, and it is death (and birth!) that allows a society to shift its morals.


Imagine a world where people don't suffer from aging, but that does have the problems you envision of slow social change. Would an appropriate solution would be to release a pathogen that slowly cripples everyone's bodies and minds over several decades before killing them?


Even if that were true, and progress on social matters slowed somewhat, might it not be worth it to save many tens of millions of lives every year?


I disagree. There is an obsession with preserving life in our culture, at any cost. But everywhere else in the world (ie. for other animals) there is abundant evidence that death is crucial to life. Without a tree dying, what would mushrooms feed on, where would insects make their homes, etc.? Didn't you watch the Lion King?

Would you rather have tens of billions living forever in socially stagnant, oppressive conditions, or a few billion living in gradually-improving conditions? Doesn't the quality of the life matter as much as the quantity?

To take the argument to an extreme, I would certainly rather live a hundred years of average contentment than a thousand years of being tortured by a sadist every day.


Would you rather have tens of billions living forever in socially stagnant, oppressive conditions, or a few billion living in gradually-improving conditions?

This is a huge false dilemma.

Doesn't the quality of the life matter as much as the quantity?

Certainly. And the effects of aging are heavily detrimental to quality of life.


Why is it a false dilemma? I like your thought experiment of a world that doesn't suffer from aging but does have the social problems described above. But that's not the world we're in. I'd rather fix the social problems first because I think they'll get harder to solve if we get rid of aging first.

Ask the next menial labourer you encounter (the person making your food, ringing up your groceries, or cleaning your hotel room) which of the following they'd prefer: A) A basic income* until they die around age 100 B) Eternal life in the same economic & social conditions they're in now

Do you really think the majority would choose B?

* I'm using basic income as a placeholder for an improved economic & social situation.


This post really hits home for me. My dad is in a similar situation as Steven after a sudden diagnosis with a very aggressive form of lung cancer. Despite a growing brain tumor, he was still tweaking database reports and writing SQL queries from home up until a few weeks ago. He made sure his coworkers were watering his plants even as he started chemo and went through full-brain radiation. He's not some startup guy and was never a workaholic, but I think working -- and the idea of returning to work -- was something he really needed. I regret not reaching out to his coworkers sooner, though. He's too sick to have any visitors now and for a guy with a reputation as a curmudgeon it seems he had a lot of people who cared about him.


I had very similar situation at work, one day we found out one of the teammates passed away in his sleep (a young, heavy, although sporty person), but I would never make a blog post like the one I'm commenting on. Being Nicole I would be really angry about you invading my privacy, making her tragedy all about yourself and your fear of mortality... Just saying.


Everyone regards their privacy in this kind of situation differently. Some want to keep everything to themselves and others want to share. Considering the OP probably knows the family he's much better placed than any of us to make that call. It also seems like it's generated a nice response so who's to say it won't comfort the family? I guess it would be best to ask permission first but I'm sure the family has more important things to think about at this time.


I'm so sorry to hear that. A very sad and sobering read.

I'm sure a lot of your coworkers and team are contributing, like you said, but it'd be nice to think (if they haven't already) that your actual company would make a reasonable contribution to Nicola and their future child, since it sounds like Steven gave so much to the company (albeit under compensation). I know I would for one of my key and valued employee's, if I were in a position to do so.


Yeah. My company pays for a pretty good life insurance policy and long-term disability policy for each employee (beneficiary designated by employee, of course). It really doesn't cost that much and can make all the difference.


I don't have a brain tumour, but I have had, and am still having, an experience which has made me think seriously about my mortality.

I'm 31. About three years ago I started having three/four day long bouts of total delirium, roasting fever, extreme nausea, can't even keep sips of water down when it happens - by day three or four, I'm usually too weak to move, totally dehydrated.

Two years on, my GP is still going "clearly your hygiene is terrible and you're giving yourself food poisoning", and it had got to the point where I'd be lying there, lapsing in and out of consciousness, feeling my heart stop. And start. Then stop. Then I'd turn blue. Then it'd start again. Then I'd turn back to a nice healthy jaundiced yellow.

Took myself to the far side of the planet, got diagnosed with gallstones. Not just good old fashioned gallstones, but gallstones that make an imaging tech go pale and run out of the room to bring in several other people to hemm and haww before looking at me and going "Sir, you're extremely ill.". Turns out my gall bladder ruptured years ago, due to a large collection of stones, and occasionally oozes bile and bowel contents into my innards. It has eroded my vagus nerve (hence the cardiac symptoms), damaged my liver, and I'm having surgery at some point hopefully soon to have the damned thing (gall bladder) outright removed. I can't drink any more, and my other half gives me no end of shit for smoking weed in my spare time, as it's the one thing that makes the f'ing thing stop hurting - or at least makes me not care that it hurts. I've tried various legal pharmaceuticals, but they all either make me more nauseous, or make me incredibly tired - or I can't take them because they're liver metabolised. I digress.

Anyway.

The long and the short is that knowing what's wrong with me has helped, as when I didn't know it was utterly terrifying, and while it's now still terrifying, it's a known terror, rather than my darkest fears made manifest.

I could drop dead with only a few days notice from this, and my next attack might be my last. Every time I've had a major attack, I haven't just felt like I've been dying - I have been dying - and have been fortuitous enough not to. For now.

This led to the realisation that I could drop dead at any point, regardless of this. I mean, we're all ultimately aware of our own mortality, but until you're reminded of it every day, by perhaps an awkward "I have a stick wedged under my ribs and looking at things makes me feel sick" sensation, you never really appreciate it.

Mortality is the ticking timer that keeps you alive.

If the mortality of others can remind us of the importance of living well, then even if just in that way alone, they persist in doing good for we the living even once they're gone.


The ineptitude of doctors never ceases to amaze me. One particularly idiotic fellow proudly announced to me and the entire office that he'd discovered I have diabetes. Even if that has been true, the manner in which he announced his pleasure at the epiphany made me want to punch him in the balls. hard. After a confused and sad ride home it only took a short talk with my extremely unqualified wife to convince me that he is mentally challenged and had no idea what he was talking about. Of course she was right.

In a fun twist, a month later I contacted a different Dr's office in the same plaza to get a new doctor. I wanted to verify it wasn't the same location, so I specifically asked if he worked there. The attendant said "No, but why do you ask?" I told her the story and she said that he had applied to be a part of their practice and, after my call, ther was an extremely slim chance of that happening. Made my day.


> The ineptitude of doctors never ceases to amaze me

Yeah there are stupid people in all professions but doctors in general are overworked and there's only so much specialized knowledge that generalists can hold in their heads.

Who knows. Maybe this will help? http://www.businessinsider.com/ibms-watson-may-soon-be-the-b...


The managerial ineptitude of limiting doctor supply so they are overworked is even more medical system idiocy.


Not a direct response to what you said, but since this is a common discussion on HN, I just want to get some facts straight pre-emptively:

1) The AMA has nothing to do with limiting the supply of doctors in the US

2) The AAMC (not the AMA) formerly limited the number of medical students per-year in the US, but they stopped this practice sometime around 2004 with the stated goal of increasing the number of medical school graduates.

3) Even if we doubled the number of medical school graduates overnight, we still would not have more practicing physicians in the US, because the bottleneck occurs during residency (after medical school) - there are a very limited number of residency slots.

4) Residency programs in the US are funded by the federal government through Medicare, so increasing the number of practicing physicians would require increasing funding to hospitals that offer residency programs by increasing spending on Medicare. This is both politically complicated and incredibly expensive (training a resident is very cost-intensive when you look at the big picture).

So yes, there is definitely an issue with the number of practicing physicians in the US, but fixing it requires Congressional authorization to increase spending (and not just by a little), so it's unlikely to change anytime soon.


So how about a residency system that doesn't depend on medicare government funding? Or accepting foreign residency programs? I wouldn't think canadian, scandianvian, british, german, australlian, etc residencies and doctors should be considered invalid for example. From what I know, even being a Sweden trained doctor makes it hard to transfer into the USA and get a licence.

Residents from what I know are not well paid, what makes it a profit cost center for them that they require government funding for it?


The reason why foreign residency programs aren't considered valid in the US is quality control, from both competency and medico-legal standpoints. If you were CEO of a private practice or hospital in New York City, who would you hire? A grad straight out of a US residency or one out of Swedish residency? The safer bet is the one straight out of US residency for numerous reasons: you can more easily trust and call his references, he has already likely taken the US medical licensing exams, you don't have to give him an English comprehension test, familiar with the mess that is US medical system, etc...


As a CEO of a hospital that wants to make money I would hire the Swedish grad for less and give him a 4 month US legal medical mess class for a lot less in cost that wouldn't involve a doctor. Since I'm known as a hospital that accepts non-us residency people, I can save a lot of money until the market resolves this inefficiency.

Also there are the other 5 anglo countries, which will have no problems with english. Many of these UK, german, etc grads could also be people from the US originally, so there wont be english competency problems there. Many europeans also have excellent english on average, like germans and scandianvians. It would be miles ahead of the average non-west euro immigrant software engineer that is very common in the USA.

QC and skills wise, I don't have much worries from these top tier countries medical practices. Do you freak out if you have to go to a hospital in Sweden because the doctors may be bad!?


I've heard of residents being paid as little as $25-30k/yr.

The issue is largely that you have an attending physician making a great deal of money (compared to the median US, not necessarily for a doctor) who spends the majority of his or her time teaching, watching, and fixing what the resident does.

You can easily have a hospital/government (not sure what the funding split is) spending $500k/yr for $100k/yr in productivity.


Is there some reason that hospitals can't fund the programs themselves? Or do they just choose not to?

More usefully, what could be done to get hospitals to fund the programs? Some hospital systems have billions of net income, they can clearly afford to fund at least a few residencies.


Couldn't it be same incentive why we like interns in tech? In tech, we love internships and most top companies go out of their way to have attractive internship programmes. This allows you to (1) filter future hires much better than hour long interview (2) lot of less complicated stuff can be offloaded to them (3) well, yeah, cheap labor (4) much better cultural training (5) young energetic employees with passion to improve things.


If consumers of IT products were given the right to potentially sue for every bug that resulted in adverse situations arising for them, the whole industry would collapse in less than a year.

Now, put yourself in the shoes of a company/NGO that arose to fill in the abandoned niche afterwards. Would you be willing to take in a junior employee and let it do unsupervised work? Would the affordability, cultural fitness or "passion" of said junior employee make a big factor in your decision?


We obviously don't give wheels to interns and all go on vacation. Initially interns gets work that is fairly low risk to your business. You observe their quality and evolution and gradually give them work that has higher stacks. Same for residents, I would think they would get work that is at Nurse+ level initially, then may be they start as helping hand in operating rooms and so on. As you see they are reliable and consistent, you increase your risk tolerance. Although tech industry don't get as many law suits I think they face much higher financial consequences for screwing up. Imagine Facebook intern bringing down a service because of an error. That would be equivalent of many lawsuits in terms of loss of revenue.


> Although tech industry don't get as many law suits I think they face much higher financial consequences for screwing up.

Agreed on that, though there is an upper limit on that, you cannot lose more revenue than you make over the time it takes to resolve the incident.

On the other hand, doctors can be assigned punitive charges (is the term correct?) well beyond the "objective" loss of the patient. That kind of stuff can bankrupt health care practitioners... that's why they have insurance AND legal departments.

Maybe it is just the perception of risk, but I think that explains why there's much more caution around it.

Another data point. Medical schools in US accept only people that has successfully completed an undergraduate degree with transferable skills. In many countries, you can enter medical school after highschool (though the degree takes more years of study than your standard 4 year bachelors).


> Some hospital systems have billions of net income, they can clearly afford to fund at least a few residencies.

What incentive, economic or otherwise, exists that would cause them to do that?


Yes, that was the question I was asking in the previous sentence.

I wouldn't be surprised if hospitals were able to benefit from cheaper doctors though.


Public benefit.


What are the expenses involved in a med student's residency? From the outside it looks like they do a full doctor's work, but are only paid 40k a year.


Hey, look at the bright side, at least yours didn't turn out to be stage IIIc cancer, after three months and two doctors assuring me "You're young! It's probably nothing." Even with a family history and scans showing an enlarged lymph node.

This is the most common story you'll hear from a cancer patient.

The most upsetting part is how critical early diagnosis is: the difference between stage II and IIIc can be the difference between 80% vs 20% five-year survival.

Good doctors are few and far between, and good diagnosticians... I dunno, me and my family have been in and out of the medical system for a while now, and I'm yet to meet one.

When you go in, do your own research, get a copy of your results, and tell them exactly what to do.


> Good doctors are few and far between, and good diagnosticians...

This has been my experience, repeatedly. The GPs I have had aren't motivated to get to the bottom of any problem that can't be solved in one 15 minute visit, and refers anything out to specialists. The specialists have all diagnosed me with whatever issues fit their specialty. No one in the US medical field seems interested in actually finding out the real problems, just what's easy for them to diagnose or fix.

After writing this I realize how cynical it reads, but it's the truth! I'm sure there are good doctors out there -- maybe in a teaching hospital?


I know doctors will hate that, but you do have to do your own research.

My mother was on phen fen for weeks even after telling the doctor she had chest pains. Only after she read a newspaper did she find out how horrible it was. The doctor was clueless and careless.


I have strong upper chest pains (constant pressure), regardless of position. Went to first doctor, was told "it's just bruised ribs", even though I don't play any sports or do any serious workouts.

Went to a second doctor recently after a few months as it started getting worse. "It's just heartburn", even though I told him I already take a PPI, H2 blocker and calcium. I've had heartburn for 12 years and know this was a very different feeling, but he basically ignored me and proceeded to ask me about how often I went to church and about my sex life. I wish I was joking. So he wrote me a prescription for ranitidine (a weaker H2 blocker, sold as Zantac OTC.)

But thankfully the second time I was given a blood test and found that my vitamin D level was <9ng/ml, even though I was already taking vitamin supplements. So he wrote me a prescription for 150,000 IU of D2 weekly. That seemed to make it worse.

So I looked into this and found that D2 has poor bioavailability and depletes magnesium. So I obtained D3 and magnesium supplements, am taking a saner supplement level (10,000 IU daily), and have been feeling quite a bit better. Not perfect, but supposedly it can take three months to fully recover.

I was very surprised to learn that a lot of people develop random musculoskeletal pains in response to very low vitamin D levels. Neither doctor even considered that possibility.

I was very worried that this might have been something more serious, and it was basically impossible to convince either of two doctors to actually do some real tests just to be safe. When I read stories like this, I can't help but wonder, what if it was the start of cancer (which killed my father)? And by the time the symptoms got bad enough to not write me off right away, it'd be too late to treat it?

I've had similarly terrible experiences with fatigue during the day due to my job's oncall responsibilities. That doctor told me it was depression (I am absolutely not depressed), and tried to get me to start taking Zoloft, which I refused.

These GP doctors just don't listen to their patients nor take their concerns seriously. I'm sure everyone always assumes the worst when something bad starts to happen, and likely it does turn out to be nothing. But one in three people do develop cancer in their lifetimes. How the hell are we supposed to get it diagnosed early when doctors just casually dismiss us out of hand?


I can relate to this. A few years ago I was a 30 year old guy who felt like a feeble 70 year old. I was tired, depressed, and just didn't feel well at all. I had a blood test and the doc was flabbergasted at how low my Vitamin D levels were. Technically I had rickets! But then I started taking 10-15k of D3 a day and in a couple of weeks I felt great. Now I take 5k in the summer and 10k in the winter and haven't a had a problem since.

So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.


Same here, add poor circulation to the list of symptoms. I no longer have perpetually cold feet. I had to have my GP refer me to an endocrinologist though. The endocrinologist spotted it right away. Super cheap to treat. Been taking it for about ~6 mos.

>So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.

Especially if you work indoors or otherwise avoid sunlight. (I don't take special pains to avoid the sun. I like the sun, but I do avoid outdoors when it is too hot, which is most of the time in my area.)


Exactly how I felt! I'm 31 now myself. I'm really hoping my experience is like yours, because I'm still not 100% myself again. Currently 2.5 weeks in.

I can't even imagine what my levels were prior to taking the 500% RDV supplement I was on before having my blood checked. But at <9ng/ml, I most likely have osteomalacia.

All doctors will only prescribe D2 (ergocalciferol); so you really need to go and get D3 (cholecalciferol). Your body naturally produces D3, and the latter is much more bioavailable. Because of this, you will also want to scale down your dose and not take as much. It's possible to go too far and end up with hypervitaminosis, which ironically can also cause random bone pains, and calcification of your arteries.

It's important to test your 25(OH)-D levels every few months when taking extreme supplements.

Also, be sure you are getting enough calcium and magnesium. These are the chemicals needed to maintain healthy bones. Doctors do not prescribe the magnesium, and large vitamin D supplements will deplete this, also leading to calcification and other problems.

Finally, for anyone living north of South Carolina, you will not receive enough UVB radiation from the sun to produce sufficient levels of vitamin D during the winter months, and milk really has very little vitamin D. So you might want to test and possibly supplement if you are experiencing random musculoskeletal pains. Low levels are fairly common, and usually not a huge deal. But at my level, it was fairly severe.


Out of curiosity, why do doctors only prescribe D2? It sounds from your description like there's essentially no reason they shouldn't be prescribing D3, and yet apparently none do.


A doctor did advise me to take D3, though she's an unusual one, far more helpful than my official insurance-provided doctor. I don't know what the official one would've prescribed, because none of them even considered testing for it.


Vitamin K should be considered here as well. K1 is found in leafy greens, while K2 is found in meat and poultry (liver is a super source), and natto.


> and natto

... erm, well ... maybe chest pains aren't so bad after all :P


As the joke goes:

Q: What do you call someone who finishes bottom of their class in medical school?

A: Doctor.


I've been to my GP three times before I realized I've never even met him. I've been seeing a nurse practitioner.


My GP is a Certified Nurse Practitioner and I'm ok with that because she actually talks to me about my life and what is going on to try and get the whole picture.


Isn't it strange that there is still no career path from nurse to doctor? Medicine is still a closed shop.


There is a path from nurse to doctor. It's called medical school. I've known nurses who have made the jump.


Doctors are people like you and I. They are imperfect and make mistakes. There are plenty of brilliant doctors out there and not-so-good doctors out there. It takes responsibility on the patients' part to advocate for themselves, do some research, and find the right fit for them.


To add to this, I used to be very critical of doctors but having had various metabolic challenges and going off and learning all that stuff, medicine is a difficult confusing mess.

If you disagree, read this (about 2/3 of which is relevant to me):

http://www.amazon.com/Endocrinology-Adult-Pediatric-2--Set/d...

There are thousands of diseases and not that many different symptoms. Most serious diseases have numbers of mild conditions that look very similar.

This is not to say there are not major issues with the way medicine is researched and practised. And that being a doctor does tend to encourage people to be arrogant and overconfident. And that the medical basically selects people who are good at memorizing stuff.


A friend of mine was told by a doctor that he had AIDS as it fit his symptoms and he had been an inter vinous drug user long in the past (what drug counselor hasn't?). Didn't wait for test results. He was a bit peeved and relieved to find a negative test 2 weeks later. He had the flu.


This is going to sound stupid, but I love you. Thanks very much for writing this.


Why wouldn't your GP even order an ultrasound? If you're experiencing jaundice, and are otherwise healthy, gallstones are the most likely culprit and can be detected via a simple ultrasound in most cases.


Because my GP is... not cut out for his job, to put it nicely. I need to change, but it's irrelevant right now as I've circumvented him.

I thought his approach was weird and off, and must have been something I'd bought about:

Him: "tell me word by word what you want me to put in your notes"

Me: "uh, what? I don't care. I just want you to at least have a crack at figuring out what's wrong with me."

Him: "'Abdominal pain.', then."

until I learned that he says the same to practically everybody he "treats".

I asked for an ultrasound, as I had suspected gallstones about 18 months into the ongoing nightmare - he said, and I quote: "You're not fat. You're not female. You're not forty. You don't have gallstones. You have hypochondria. I'm not wasting the time it'd take to request one."

I get that he sees dozens or more patients per day, and that it's got to be an incredibly trying job, like tech support but worse, but if you can't take the heat... get out of the kitchen, before you inadvertently kill someone, and go be a lecturer or something.

Compassion fatigue is real and it kills. http://en.wikipedia.org/wiki/Compassion_fatigue


What country is your GP in?

If they're in the UK I implore you to complain about the lapses of care. Look at it this way, it isn't up to you to parse judgement over if the care you received was fitting or not, but it gives people who are qualified to do so a heads up so they can examine it.

The NHS has a lot of very good GPs. This clown is giving the service a bad name and worse still giving people a sub-standard quality of care. Please complain to the health authority.


I've had a similar (albeit much less serious) situation with a GP. Went to one and he put me on some pills. The next day I was in so much pain I went to another who sent me to hospital and he and every doctor I saw for the next couple of days was shocked the first GP hadn't sent me as a precaution as that should be SOP. I've had to see the first GP a few times (just for basic things because other GP's were busy) since then and every time I've regretted it. Change GP asap.


Your GP doesn't understand statistics. And is an asshole.


Are you allowed to sue the GP?

Also, if you don't mind me asking, why didn't you get a second opinion sooner?


This seriously sounds like malpractice. If I were you, I'd be consulting a lawyer.


> ... go be a lecturer or something.

That's a bit harsh, isn't it? & Are you sure you'd want him to go and propagate his habits by teaching them to others?


Dude... I don't know how you survived that!

My gallbladder died, went necrotic and nearly killed me in the span of a few short days.

Good on you for finally getting the problem fixed and having an iron constitution, mate. Next time a little less waiting for a second opinion may be in order!


Since Steven has a child coming, I really hope that he had some life insurance.


I hope I don't derail by telling everyone: if you have someone who depends on you, get life insurance.


Apart from his wife who was working as well ,he didn't have anyone anyone who depended on him . They found out they where going to have a baby until after the tumour.


Good comment. For people in their mid-30s and young kids, I assume term life is a good option?


Term life is almost (almost!) always the best option if your goal is actual life insurance as opposed to investment, asset protection, or something other than you having a heart attack or getting hit by a bus.

Whole life is rarely a good investment choice unless you have considerable assets, but HN has a much higher income than the median so there are likely folks here for which is makes very good financial sense.

But yes, if you have kids both parents absolutely should have term life insurance no matter what. It's very cheap, incredibly cheap if you are not a smoker and have no health issues.


Term life insurance is a great option. One way I've heard it said: "For the price of pizza-for-4 each month, you can have ~10x your annual salary in coverage for a 15 year term."


To answer you question no Steven did not have life insurance ! So everything thing that is being donated is for the future of his baby . I too was hoping he had life insurance :-(


I have found out through his family that he didn't ! So everything thing that is being donated is for the future of his baby . I too was hoping he had life insurance :-(


I'm really sorry to hear about your situation. For me I kind of had the opposite experience with my gallstones. I was just having general issues in the morning (heartburn, urgent diarrhea, and just discomfort) and I couldn't pin it down on my diet. Eating worse made me feel better than eating well. Doctor says it can be multiple things, let's just go and do an ultrasound on your stomach. Within five minutes, yes you have gallstones. Schedule surgery, in surgery and out two hours later then an hour after that I'm at home chilling for two days. Then my doctor explains why eating crappy made me feel better, because the stones were keeping the duct open and bile was coming out all the time, so fatty foods used it up. When I ate well there was always extra bile. Of course fast forward to now and if I eat terrible I will be on the toilet asap.


I had the same experience. I was about the same age when I felt bad a lot. I had developed food allergies and suffered from nausea after I've eaten something along with a slight chest pain. It was going on for weeks before I went to my doctor and got diagnosed with a single gallstone and a lot of slug right away. In those weeks before, I was terrified that it could something more serious. But I told myself, that it was just the stress of the current project and the traveling (each week). After the diagnose, I went to the hospital three times when it was really worse, but denied further actions because of my project. The last time I went was on the last day of my project. I was in a really bad shape. I was operated a month later and today I am fine.

What I learned: See a doctor ASAP and do not delay treatment, even when working on one of the best projects.


I am about 10 months in to a similar experience, pre-diagnosis, and I can echo your statements about how terrifying the unknown can be. Being surprised to wake up in the morning can really alter your perception of reality. I think there is an enormous amount of abstraction needed in this perception to avoid going insane. I think it is important to be able to remove oneself from the reality of ones own mortality and I don't think it is possible to live normally while being too aware of it. Having said that, If recover from this whole thing I think it would ultimately be a good thing to have gone through as my appreciation of normal life would be much higher.

Good luck for your surgery.


Hehe wow it's funny to see my words written by someone else, I've come out of the other end of this, for three months I'd be surprised to be alive in the morning after nights of wakin up to chest pains (when I was 22 and relatively healthy). Like everything it can change you, it gave me a different way of seeing the world and I can slip back into that cold mindset to consider things when I need a bit of distance. It also gave me even more appetite for doing fun things and staying true to my natural, childish disposition :)

I'll never forget the ceiling of the apartment I spent so many nights waking up in pain seeing, or the sun shining on the wall in the mornings as I thought "oh, I'm alive!"

Best of luck to you too friend.


Meanwhile, until you get it removed, did your doctor put you on a strict no-fat diet? Mine did (I wasn't as bad, but had stones in the duct causing pain/damage). And he meant 0 fat (kind of hard to do), or as close as possible to it. I guess fat causes the gallbladder to start contracting (to push an extra dose of bile into the digestive system), so without fat in your diet it will just be the steady ooze of bile from your liver.


I also have had issues with my gallbladder that ultimately resulted in its removal by a surgeon. However, afterwards I gained over 120 pounds over a three year period. Recently a coworker brought it to my attention that grains, particularly wheat and anything with gliadin in it, can be especially harsh like sandpaper on the intestinal lining leading to a condition known as permeated gut.

The gut contains millions of microscopic structures known as microvilli and they facilitate the absorption of nutrients into our bodies. As the gut lining becomes more and more damaged by plant lectins like gliadin our bodies begin to suffer from starvation even as we intake higher numbers of raw calories. We also become susceptible to autoimmune diseases because lectins escape through the damaged gut lining into the body causing the body to mount a full scale autoimmune response. This happens as a result of our bodies producing antibodies to our own protein structures like the pancreal lining, the myelin sheaths in the brain, and other important components of the human body because lectins highly resemble these proteins.

Additionally I have since learned that a good portion of people who required surgical gallbladder removal have undiagnosed celiac disease or non-celiac gluten intolerance.

The only way to test for this if you do not have the antibodies they test for to make a diagnosis is to get a biopsy of your gut villi. They can use a camera capsule to inspect the state of your villi and make a recommendation.

Upon removing all grains from my diet and obsessively avoiding products that contain grains of any kind such as soy sauce for the past 10 months I have dropped 95 pounds and am on tract to return to my post graduation weight of 190.

This is not medical advice please seek the assistance of a physician before undergoing any significant dietary changes in your life.


> and I'm having surgery at some point hopefully soon

I have to ask why you're not having emergency surgery if this is such a serious issue?

I went into an ER (American) in 2009 because of severe stomach pains. Within 12 hours I was on the table, and the surgeon said I had the worst gall bladder he's ever seen that wasn't removed in pieces (I was 23 at the time).


A good lesson not to ignore things, and for everyone to be aware that sudden changes in their colleagues behaviors are more likely serious issues of any sort than they are laziness or idiocy.

I was fortunate in college to discover fairly serious cancer very early (total accident), and am very appreciative of the support I received at the time. Likewise, someone very close to me who had been behaving oddly for a while was diagnosed with a serious nutritional deficiency that explained everything.

Bodies and minds are terribly imperfect, and if someone you know is suddenly behaving oddly, at best it's a serious personal problem, at worst it's a physical problem even they may not recognize. Be a friend to them!


Just want to say I've been here too. I also had supposed gallbladder failings. Bouts of painful nausea so strong I couldn't begin to describe. Vomiting for days on end, even water un-drinkable. Nearly every episode ended in tears, screaming, non-stop dry-heaving, brain-stopping trips to the ER, where only Dilauded would calm me enough to sleep and somehow "reset".

After 25+ of these episodes (which would last typically 2 weeks, building towards the end), 7+ doctors, so many scans and tests I can't describe, long periods of missed work and play, and abuse of drugs that helped (thankfully none really did much, even weed in copious amounts barely helped so I never used it much). I'd get so sick from eating I was prescribed Xanax for the massive panic attacks I'd get just looking or thinking of food, because my fear of pain was so strong.

I had my gallbladder removed by the 5th doctor. I thought it worked. I stuck to a very clean low-acid diet after that, avoided tough food (I had developed a hiatal hernia from the vomiting), and took PPI's religiously and was fine for 8 months. I thought I was cured. I stopped the PPI's and within a month I was back at the ER. Pretty devastating. Now, I can control it. I cycle on PPI's, avoid all smoking and alcohol, as well as eating hot/spicy/acidic food too often. I've been 4 months now without an attack on this regimin and I feel pretty confident.

The worst part they never mention with undiagnosed illnesses of things are the mental side-effects. I was pretty much ostracized by large groups of people who certainly believed I was either looking for attention or avoiding admitting I had an eating disorder. I even had a doctor at the ER once tell my mom that's what she thought. My parent's even began to doubt I was actually ill. Finally, after months, I even doubted myself. The pain was real, but perhaps I was inflicting it on myself somehow? (crazy for me to think back on my mental state at this point). I felt too weird to even hang out with old friends, it's not masculine to not be able to eat. Paranoias and fears grew with each sickness and month of uncertainty. By the ended I was certainly clinically depressed. I felt my entire persona had melted away, I was empty. I didn't even know how to talk to my mom on the phone, I knew she would immediately recognize something wrong with me. I lost confidence, happiness.

Luckily that all returns if you can maintain health. Just four months ago I had reached my low; malnourished, weak, paranoid, afraid, tired, forgetful, slow. So scared of more pain, because at this point I felt I was running low on "reasons to live".

But, within a month of eating well my energy and happiness were back, with two more months I found myself feeling like "me" again, something I hadn't felt since those last 8 months of health, and before that since years before. And the difference was just small changes to diet, and avoiding many social situations that make that pretty much unavoidable.

I don't know what the moral of the story is. I feel like I did everything I could and struck out, and it's pure luck that I'm still here today. But I guess I'm thankful. I still am dubious on whether life is "worth it", and I couldn't imagine bringing kids into a world where the sort of suffering I went through is even remotely possible. But perhaps it did help me grow up and gain perspective on what matters.

Keep searching for solutions, keep experimenting, don't be afraid to ask for help and tell doctors to fuck off.


I think your last paragraph gave a fine moral. I wonder how many people who could have lived died because their support disappeared? The quicksand kills so many because no one is left to throw a lifeline. It's so very hard to believe in yourself when no one else does.


> Mortality is the ticking timer that keeps you alive.

For some people this may be true. Here is an important alternate view - that we rationalize death as being valuable because we can;t fix it yet.

http://www.nickbostrom.com/fable/dragon.html

More on what you can do here

http://www.sens.org/


Man, I can only say "thank you" for sharing your story. Very touchy. I hope you will recover soon.


Thank you for the sincere post. Best of luck with your surgery, hope everything turns out well.


First, I'd like to say thank you for writing this. I'd also like to add a little for others who may be in a similar situation.

Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.

Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.

I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.

Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.

I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.

I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.

So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.


I'm not trying to do that "diagnose you over the Internet" thing, but did any of your doctors ever mention or look into autonomic nervous system issues? Reason I ask is that what you describe is somewhat similar to the kind of cognitive impairment ("brain fog") and fatigue I experience with dysautonomia. Although it sounds like your symptoms are much more extreme, they're not inconsistent with what I've seen other patients experience.

For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.

Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.

In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.

Good luck, and good for you in still fighting to be a positive force in the world and for your family.


This is incredibly frightening, as I had mono when I was 26, and have never felt as "sharp" afterwards...just been telling myself all in my head, or a part of getting older


Thank you, I'll find out more about dysautonomia, and get on with finding a solution to this thing.


My story is very similar to yours. Seeing a sleep doctor I was diagnosed with Idiopathic Hypersomnia, then later Narcolepsy.

Same memory issues, mental health issues, physical health getting worse year after year throughout my whole 20's. I found out just a few months back I actually had Lyme disease for almost a decade, that had gone undiagnosed and untreated.

http://www.ilads.org/lyme/lyme-quickfacts.php

50% of patients with Lyme don't recall a tick bite.

There are over 100 strains of borrelia in the US that can potentially infect humans, and over 300 worldwide.

A Western blot test by a reputable laboratory is the most reliable test out there, like this one:

http://www.igenex.com

If you do have Lyme disease, there are natural, lasting ways to heal:

http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Co...


FYI: acute diabetes has the same symptoms (fatigue, memory loss, fade out) as you mentioned, and is easy and cheap to diagnose with a blood test. Skip sugary drinks and candy until you get a test.


have you seen a consultant neurologist? or a consultant virologist?


I've seen a neurologist who my GP thought highly of, but it quickly turned into probably the worst doctor's visit I ever had.

About ten minutes into the exam he told me that it was either depression, or sleep apnea, and that I was just looking for a way to get out of working.

I'll admit that the Part of it was my fault -- I was beyond exhaustion and not exactly on my best behavior. But I also had seen maybe eight different doctors before then, and, other than sleep apnea, had been misdiagnosed and mistreated for several things already. My GP didn't seem to believe that there was a real problem, and I was just falling apart physically, financially, and emotionally.

That's about where I gave up hope of getting useful medical help, and decided that I was just going to tough this thing out, and if it kills me then that's just how it goes sometimes... Not a smart choice, but that's where I was at the time.

Any way, that was then, this is now. Writing these posts has gotten me to think about how long this has been going on, and, now that I'm more clear-headed, it's time to start seeing doctors again and see if I can get this fixed.


I worry for you, and I hope you get to see people who do the right tests and scans and help you.


I hope you sue the living shit out of your GP.


How long until a daily brain scan and body scan is a part of everyone's routine, the same way brushing your teeth is?

Problems like these are untreatable if left for too long, but if caught early, there's sometimes hope. The solution seems to be to develop as many types of passive scanners as possible.

The problem is false positives. But wasting a month needlessly visiting the doctor doesn't seem that bad.


False positives aren't inherently a problem. If you have accurate understanding of the sensitivity and specificity of a test, then you can take action to maximise the utility of the expected outcome.

This means, for example, not necessarily performing a biopsy just because something is there (but it's probably benign). The cost of invasive procedures such as biopsies, and risk-increasing tests such as CT scans has to be balanced against their benefits.

Of course, there is no risk with a full-body MRI scan. The machine itself is expensive, but otherwise it nominally only costs electricity, maintenance and operation. If full-body scans were, as you say, routine, the cost of the machine would be amortised and an economy of scale should prevail.

The problem is legal; if a doctor sees something on a scan and doesn't take action, they can be sued. This is the case even if there is negative expected utility from performing the test due to the low probability of an actual malignant condition. Due to this, it is not uncommon to hear doctors say that full-body scans do more harm than good.

Until the legal system starts to account for rational choices based on statistical information, this problem is going to persist.


> Of course, there is no risk with a full-body MRI scan.

Not quite true. While the scan itself isn't harmful, the strong magnetic fields, RF fields and noise have caused several accidents, some fatal. Compare for example http://www.auntminnie.com/index.aspx?sec=sup_n&sub=mri&pag=d... "The FDA's Manufacturer and User Facility Device Experience (MAUDE) database documented a total of 40 incidents for MRI in 2004. In 2009, the total more than quadrupled, to 193 reported adverse events."

Example of a fatality: http://abcnews.go.com/US/story?id=92745

> False positives aren't inherently a problem. If you have accurate understanding of the sensitivity and specificity of a test, then you can take action to maximise the utility of the expected outcome.

False positives can still cause huge psychological strain on the involved person(s).


> Until the legal system starts to account for rational choices based on statistical information, this problem is going to persist.

The legal system does account for this. To succeed in a malpractice action, a plaintiff must prove a defendant failed to meet the required standard of care, which means the defendant failed to exercise that degree of skill and learning ordinarily exercised under the same or similar circumstances by members of the defendant's profession.

If these "rational choices based on statistical information" you refer to are within the accepted standard of care, a doctor is not going to be successfully sued for doing so.


But at what cost? It's like saying that broad patents aren't a problem because they can 'just' be invalidated if they become a problem.


> False positives aren't inherently a problem. If you have accurate understanding of the sensitivity and specificity of a test, then you can take action to maximise the utility of the expected outcome.

In many cases, the optimal action is not to test in the first place. "Overdiagnosed" is an interesting book on the subject by Dr. H. Gilbert Welch. A recent piece by him in the NYT gives an idea of his thesis: http://www.nytimes.com/2014/11/06/opinion/an-epidemic-of-thy...


If full-body scans were, as you say, routine, the cost of the machine would be amortised and an economy of scale should prevail.

That's not really true. The cost of the machine is amortised by having it be in use at all times. In my experience MRI's are already fully utilized. I've had 3 in the past year. Even during Diwali there was always someone immediately before and immediately after me, and I never have much choice about appointment times.


I don't know about the financial model.

Google indicates you can pay up to $3M for a MRI machine and $100K/yr energy and required maint costs. Google indicates a median radiologist gets $300K/yr and to make the figures ridiculous I'll dedicate one radiologist full time to the MRI. Google indicates mean lifetime of a MRI machine is a decade. Google indicates a hospital remodel to make a MRI safe room and electrical and cooling and ventilation might exceed the cost of the machine maybe $4M. Google indicates budgeting 3 hours per patient is not totally unreasonable. There is maint downtime and testing and the radiologist probably wants to sleep occasionally, even if there are actual specific scans that only take 15 minutes.

So the total cost over the decade lifetime of a MRI machine

3e6 + 4e6 + 300e3 * 10 + 100e3 * 10

You don't need a calculator to add that up to a cool eleven million bucks for ten years of MRIs. However you divide that out and thats only three grand per day over that decade. Or if you assume a long term average of 3 hours per scan (a bit on the high side) thats $375 total cost per scan.

Google reports the average billing is somewhat under two grand, but my math shows about four hundred bucks. Even assuming only 50% utilization they can still only account for $800 per scan.

I'm thinking that despite the mantra / astroturf that MRI is really expensive to provide, its actually a huge profit center for a hospital. Not as bad as the proverbial $35 aspirin pill, but pretty profitable none the less.

Another way to run the numbers is if the fixed cost of having the machine and radiologist available is about $3K/day, and they get about $2K/scan in revenue, you may have been part of a long MRI train that day, but the average machine actually only scans 3 people every 2 days on long term average.

Sounds like a market that's either ready for disruption, or so well protected by regulation that it can't be disrupted.


A single machine is going to have multiple technicians and service more than 1 doctor.

A little bit of trying to find numbers suggests that 1 MRI machine might be feeding 20 doctors (if you've arranged for 56 scans a week to be the low end number and take into account specialization, this starts to make sense). I guess they are each spending a couple hours during many of their weeks.

You have labor at ~30% of cost, it looks like it should be more than 50%, and could easily be even more.


"You have labor at ~30% of cost, it looks like it should be more than 50%"

That's because I chose the highest possible machine price and highest possible room construction price I could find on google. Its quite possible an individual installation could get away with a merely average $2M machine and basically nil building remodeling costs, in which case the labor cost percentage would naturally dramatically increase.

I don't trust the google data I found of $100K yearly for energy and service contract. That sounds low. 10% of purchase price sounds believable for high tech devices.

I googled some MRI tech salary data and one tech for a decade is going to be $1M. So merely not installing marble and solid gold fixtures in the room would easily pay for a team of three full time techs and one radiologist doing absolutely nothing but supporting one machine. Which is pretty ridiculous, but I want to estimate high to make my overall conclusion strong.

None the less my overall conclusion stands that it would be a significant challenge to spend, both labor and capex, more than about a third of MRI sales price to provide the service. Looks like quite a nice profit center.


The price can certainly come down. It cost me 7500rs for an MRI, 10,000 with contrast (about $150). I'm only disputing that increasing demand will reduce prices due to amortization.


False positives don't mean a month of visiting a doctor - they mean several months of anxiety inducing "watchful waiting" or invasive biopsies.

And false positives are not a rare event. False positives are very common.

On top of that the radiation (from CT scans) increase the risk of cancer.

Scans for healthy people are strongly discouraged.

There's a possible benefit if you have any of the genetic markers for lung cancer or are otherwise at risk of lung cancer - heavy lifelong smoker for example.


Yep. My wife has yearly scans because of a tumour supressor gene mutation and last year they thought they spotted something on the ultrasound, so sent her for a CT.

CT showed that it was pretty bad, que months of stressing and worrying about what was going to happen.

Turns out it was a false positive, caused by an accessory spleen looking like a tumour. False positives do happen, and they can be pretty devastating - it took quite a while for her to get back to normal.


Would you care to share with us how you were able to determine that she had such a gene? Was it some sort of byproduct of a normal scan/test? Or was it some sort of specificly requested test you went somewhere to get tested for? Or?


I don't know about your country, but genetic screening / testing is something you need to ask for, not something that happens as a by-product of a CT scan.


If you worry that much about a false positive, I'm sorry for you, but you have no idea how much worse things may get. Many people don't get to complain about a false positive!

Stressing and worrying are both several orders of magnitude better than suffering and dying.

Source: My case wasn't a false positive.


In the context of full body scanning: false positives include spots on the lung.

So now you have someone who thinks they have might lung cancer, when in fact they probably have almost harmless scars from chicken pox.

But what do you do if you think you have lung cancer? Do you go and get biopsies? The stress from that result is significant and shouldn't be dismissed as something trivial.


People aren't worrying over a false positive. They don't know it's a false positive. In that moment their worry is just as genuine as yours is.


Of course you're right, but there's a misunderstanding there.

My point is people who went through the experience of having test results compatible with cancer and then discover it is just a false positive (which technically it's not even true, there's no cancer diagnosis before a biopsy, it just can't be excluded), well, these very people seem to speak out against screening, or adopting more extensive screening policies, because they had a "false positive", and "it's stressful".

I am pretty sure all the people whose lives were saved by screening find that pretty selfish.


I think you're misunderstanding something. This has nothing to do with selfishness -- you're only really considering the upside.

The harm/good ratio of screening depends crucially of the false positive/negative ratio vs. the actual prevalence of the condition or disease being screened for. (Plus, obviously the psychological/medical "cost" of a false negative/positive.) I would recommend the talk at [1]. This particular issue is brought up about midway through the video, but I recommend watching the whole thing.

[1] http://www.ted.com/talks/peter_donnelly_shows_how_stats_fool...


Haven't we been through this discussion recently, with regards to screening for breast cancer?

Harms of Screening Mammography: http://www.cancer.gov/cancertopics/pdq/screening/breast/heal...


> And false positives are not a rare event. False positives are very common.

Sure, but if you're scanning daily (or close to it), then you don't need to do anything immediately for a positive. You see a growth that looks like it might be cancer—then have the doctor watch it. If you're scanning often, then you'll see any changes. Does it grow? Then it's something to be concerned about. Does it stay the same? Then you don't need to worry.

With frequent enough scans, finding something isn't a cause for any alarm. You can watch how it changes, and decide if it's a concern based on that. Like skin moles. Yes, they could be a problem, but if you have one, you don't need to worry unless it starts changing. Just having one doesn't cause anxiety.


That's an insane amount of radiation, and would substantially increase your risk of fatal cancer. A single CT scan is roughly a years worth of normal radiation exposure, and then targeted to a single area of the body.


Right, I wouldn't want to do it with CT scans. But I think it's an area where a less dangerous, cheaper scanning method might save a lot of lives, even with our current techniques for treating cancer. Frequent scanning would mean people would find tumors when they're smaller, and only treat the ones which behave dangerously.


edit: I'm replacing my entire previous comment about the superiority of ct/pet-ct vs *mri scanning; it looks like some groups are doing work with MRIs that are comparable in accuracy and nearing clinical use. I still think daily whole body scans are a spectacular waste of human capital for relatively little benefit.


> I still think daily whole body scans are a spectacular waste of human capital for relatively little benefit.

I agree, and I'm not recommending we do that right now. But imagine if we had cheap, fast ways to do the scans. So much money is being pumped into cancer treatment right now, I'm just wondering if better cancer detection might be more beneficial. Our current treatment methods might get us a lot farther because we'd use them when the tumors are smaller, and we'd have a much better sense of how aggressive a tumor is.


And then the lawyers descend on all the false negatives. "Doctor, why did you miss this shadow on this photo? Two years later cancer was found there."


New ‘lab-on-a-chip’ could revolutionize early diagnosis of cancer[0]

[0] http://www.kurzweilai.net/new-lab-on-a-chip-could-revolution...


It's not really necessary to scan anything if you can collect the symptomatic biometrics and detect possible issues just based on deviance from normal variations.


In the UK when you move house you're required to go and have a checkup with your new local doctor.

It's preventative health care, not "sick care".


In reality, you'll have your blood pressure checked by a nurse, not a doctor, and a load of boxes ticked on a form. Still worthwhile, of course, but my own experience with my local doctors is that they are under a huge amount of pressure with little time to see patients for preventative medicine. It also depends very much on where you live.


X-ray and CT imaging however slighly increases the cancer risk.

http://www.cancer.org/cancer/cancercauses/radiationexposurea...


I thought a MRI is both more accurate and safer.


MRI does have some caveats - it's not available to people with ferromagnetic material embedded within them, and not suitable for those who are claustrophobic. Also CT scans tend to be more accurate for bone, and are quicker to perform so less susceptible to the subject moving about.

There's also the issue that, at present, MRI scans are considerably more expensive than CT.


And a MRI needs an enclosure, I am not aware of small portable MRI systems that would allow you to image a single leg, or breast. X-Rays are more dangerous but are more versatile in some cases.


COTS for maybe a decade now. Look at sports medicine equipment suppliers. I'm unaware of any breast oriented products but they probably exist.

Google for Esaote (my coworker got scanned a couple times by their product) and "extremity MRI"

As you'd imagine the economics are non-trivial. The machine is smaller and cheaper that a full size MRI (google claims its fraction of a million, like the cost of a house) but obviously something that can only scan knees and ankles and elbows is a pretty tough sell unless you're a sports medicine practice in which case its a pretty easy sell...

On the other hand if a "whole body sized" MRI costs $2500 per scan, then you've only got to scan maybe 100 knees to pay the capital cost of a dedicated extremity MRI. And how long would that take at a busy sports medicine practice, like a week?

I would not describe the machine as portable. Being a giant magnet you probably need a special safe room to operate it, so I don't envision paramedic/EMT ever having a MRI in the ambulance or whatever.

WRT discussion in the comments about claustrophobia I don't mind the small spaces so much as being chained down for an hour or so, that drives me nuts. My MiL went thru some tests for her gallbladder that took hours, I'd be clawing at the walls after ten minutes. Also if I could get nitrous for my wisdom teeth I see no obvious reason a MRI patient couldn't be gassed but they "never" seem to do that, which I find weird. For $2500 for a full body scan you could at least give me a couple shots of vodka.


We need to fix this, and we need to start yesterday.

“Yes, we did it, we killed the dragon today. But damn, why did we start so late?

http://www.nickbostrom.com/fable/dragon.html

If you are in a position to fund things, consider the SENS Research Foundation, instead of the next Yo app.

http://www.sens.org


How effective is the institution? We throw a lot of money at problems. Are there more effective institutions or methods? Perhaps a series of X-Prizes for medicine would help? The tricolor prize, for example: http://tricorder.xprize.org/about/overview


I worked with Steven. When he was an intern I was responsible for reviewing his code. He was not as experienced as me, but he was smarter than me. I feel lucky to have worked with him, I learned a lot from him and I like to believe he learned a lot from me. Writing code, hacking wasn't just a hobby for him, it was part of his identity. The same as it is for me.

I'm not sure what to make of this. I learned of it a few days ago.


If anything, this article points out one thing to me: spend your time doing what you love. If that's work, great. If you love your family or life outside of work more, do whatever you can to spend more time with them. Sacrifice by finding a stable, well-paying yet not "exciting" job that enables you to avoid 12 hour workdays that are normal.

If your significant other says you are spending too much time at work, that means you should make the choice over what is more important. You always have a choice.


I have absolutely no words. My heart goes out to Steve's wife, family and friends. I think many of us can relate to the long hours part of the story, the strain that it puts on relationships is real. We have all been there at one stage or another, the inevitable you are always working late and I never get to see you call/in person conversation. Not to mention the effects of sleep deprivation can be serious, there have been quite a few studies that have linked sleep deprivation to a lot of things including serious disease, reduced cognitive ability and even kill brain cells.

If there is one thing we can take from this it is: you don't know how long you have got in this life. Family is always more important than work, I think we should all remind ourselves every once in a while we have a husband or wife at home, possibly kids, who love seeing us and need your time just as much as your employer does. Jobs come and go, family is for life.


> Aside from the anger, there’s another feeling I just can’t shake. I’m not sure it has a name... It’s impossible for me to be a witness to this situation and not think “what if it were me?”

Um, you're not the first person to contemplate your own mortality. The usual term for it is memento mori, and has been a major component of culture and art for thousands of years: http://en.wikipedia.org/wiki/Memento_mori


Right now, it's more of a relieving thought really. In the sense that - no matter how much I screw up, none of it will matter when I'm dead.


In 2000 my mother was diagnosed with malignant brain tumors after experiencing similar symptoms (nausea, vomiting, fatigue, "vertigo" like dizziness). She had surgery within days and began radiation treatment within a few weeks... but lost the battle no more than 6 weeks after first discovering the tumors. I was 10 at the time with brothers age 14 and 18.

Very sorry to hear about your friend. Brain cancer is a terrible, tragic condition that can steal your loved ones when you least expect it.


fwiw, I think it's good to contemplate death and sad stories like this one remind us of it. If we all took 5 minutes each day to think about our own death, and that it can happen to us at virtually any moment, the world would be different. Better, I assume.


This is terrifying story, my question is what we can do , so less people suffer from it. Here are few of my suggestions. I am curious about your opinion:

1. Obviously take care about your health.

2. Send as much money as you comfortable can to somewhere, where you think it might make the biggest difference.

3. Support indirectly companies which focuses on these problems. As consumer you can give them feedback on their apps. You can promote them amongst the friends(although make sure you aren't promoting some pseudoscience nonsense). You can choose to buy products from companies which helps the good cause.

4. Work on problem your self directly in work or in free time, by working on open source project, helping some organization.

5. Inform others about science. Many people don't trust the science, doesn't understand basic of scientific research, which can obviously hurt the research (by less funding, cancellation of research), helps ineffective pseudo-scientific treatment.

6. Give info to others about different treatments, and scientific breakthroughs. Many people have information about last treatments only through news, who can care more about great headline than boring truth.

7. Use your pc/mobiles by joining programs like Folding@home.

Any other tips?


So I'm somewhat confused by the responses to this post. It seemed to me that his long hours at work contributed to his developing the disease. But ppl seem to be responding as if he had a natural inclination to developing it, and that we should accept it.

So there's absolutely nothing to learn here aside from "visit the doctor often"?


This is rather a memento mori, a stark reminder than it could happen to any of us at any time.


I think there isn't really a lesson at all.

It's like if a meteor falls on someone walking through town. Is there really a 'lesson' you can take from that? Sure, you could dig into the person's life and try to find some underlying meaning, or something important this person should have said or done before said meteor came shooting through the sky. But in the general scheme of things, we are tiny ants crawling over the dry parts of an ant-hill floating on a small blue puddle somewhere in the backwater bayou of the universe. Our lives amount to the goings-on of ants, and we can be squashed at any moment by unseen cosmic feet.

The truth of this - that life, and mortality, and our existence, is a fleeting and inconsequential part of everything in the universe - really puts into perspective getting pissed off at immigration reform, or the barista that didn't make your coffee right, or not making enough money, or not getting to see that one movie before it left theaters. We're so unimaginably lucky to be wandering around this ant-hill, and meeting other ants, and getting to start a tiny little ant family. When it ends, it ends.

You should also probably get regular checkups with your doctor, and exercise regularly, don't smoke or drink to excess, and try to get 8 hours of sleep each night. That won't stop the meteors from crashing down on you, but it might help you walk around the ant-hill a little bit longer.


His long hours at work probably masked the symptoms. He didn't think "I have cancer", he thought "I'm not getting nearly enough sleep." Everyone around him thought the same thing.


>> It seemed to me that his long hours at work contributed to his developing the disease.

What on earth makes you say that? Is there a documented link between working long hours and getting cancer? Citation please.


http://www.cancer.gov/cancertopics/factsheet/Risk/stress

"Evidence from experimental studies does suggest that psychological stress can affect a tumor’s ability to grow and spread. For example, some studies have shown that when mice bearing human tumors were kept confined or isolated from other mice—conditions that increase stress—their tumors were more likely to grow and spread (metastasize). "


From that very same link:

"Although stress can cause a number of physical health problems, the evidence that it can cause cancer is weak."

But they do make some statements that seem to support the idea as well.


I think it's more along the lines of "stress isn't proven to cause cancer, but if you have cancer then it may cause it to regress".

Also, given that stress significant suppresses the immune system, and that the immune system is important for protecting against cancer growth, I think it is highly unlikely that stress wouldn't affect cancer.

https://en.wikipedia.org/wiki/Cancer_immunology


I'm not claiming that at all. Just that OP mentions a lot about his working long hours the weeks prior.


A cousin of mine recently lost her life in a very short battle with cancer. She was only 41 years old -- both of her parents still living. In the past few years there have been a lot of deaths among my family and friends. Some of them were very old, some very young, and some in-between.

I would like to encourage readers here to consider this. Your life here is temporary. Even if you are very healthy your whole life, one day you will take your last breath, and it will be over.

It is easy to get wrapped up in everyday life. Pursuing your goals and dreams, or perhaps just barely getting by, living day to day. I think most people tend to push off thinking about their own mortality.

And as it is, most of us have no idea how much longer we have. We could be here 50 or 60 more years, or we could die tomorrow in some sort of accident.

So the question I would like to pose is this:

Are you prepared for your own death?

Do you have any idea what will happen to you when you die? It is going to happen. Isn't it worth considering what the possibilities are, and spending at least some time exploring the question?

I believe I have shared this before here (at least to some extent). I am a Christian, and I believe the Bible is direct revelation from God. I believe there is life after death, and that the only hope for a peaceful existence after death is found by believing in Jesus Christ in this life. I would like to encourage anyone here to read for themselves about Jesus' life on Earth, and make their own decision as to whether they should believe in Him. I think the best place for you to start reading about Him is in the Bible, in the gospel of John ( https://www.biblegateway.com/passage/?version=NKJV&search=Jo... ). That book will give you enough information, IMHO, to make an informed decision about Him.


Why become a Christian out of multitude of religions?

And if one is to become Christian then which one (Catholic, Lutheran, etc etc)?

I've read some Christian apologestics (Augustine, Aquinas, Pascal, GK Chesteron, CS Lewis et al) and they spin a good yarn but obviously you can not reason your way into/out of religion.

So why should one believe Jesus was the Real Thing and Brian was not ?

One way I can see religion working if there is a way to reconcile most of world's religions (that is they are all working to the same end just from different directions). This is what a Lutheran pastor was proposing to me that all Abrahamic religions were working towards the same goal, but that leaves the problem of Jesus.

Second way would be the second coming. This would be even more effective. Why settle for some miracles 1970 years ago, when you could do real miracle stuff every once in a while to remind people that God is indeed something they should consider. Otherwise we get some questionable miracles like the gold plates from Mormons etc.

Until I can figure this out I am doomed to remain in "conscious meat" category.


One way I can see religion working if there is a way to reconcile most of world's religions (that is they are all working to the same end just from different directions).

Second way would be the second coming. This would be even more effective. Why settle for some miracles 1970 years ago, when you could do real miracle stuff every once in a while to remind people that God is indeed something they should consider. Otherwise we get some questionable miracles like the gold plates from Mormons etc.

So if you believed that Christianity is the only religion you would be a Christian and if you believed it's the Egyptian mythology then you would believe in Seth and Osiris?

This doesn't really look like you feel any genuine need to believe in any religion; it looks like you expect "others" to provide you with verified, certified-correct worldview.

That's unfortunately a typical symptom of overdose on media and schooling.

You may read religious texts and if something sounds "right" stick to it. You may act on the world, observe it and discover its rules. You may strive to recognize others' influence on you and filter it critically. In any case, you have to work.

Only lemmings get free lunch.


"Why become a Christian out of multitude of religions?"

"So why should one believe Jesus was the Real Thing and Brian was not ?"

Those are fair questions. I would suggest that you read the book I recommended. It might answer those questions for you.


I've had a couple friends taken out by cancer over the last 2-3 years. Each time was pretty sudden; one I found out a month after he died, the other I had maybe a day of warning. Both of these people were great engineers that I looked up to, and it's still hard to believe they are gone.

Harlan Ellison has a rant, written when he was my current age, about how many of his friends were dying and that it sucked. (I wish I could find what he wrote but my books are all boxed up at the moment). He had eloquent and angry and, well, Harlan-esque words for the experience.

I remember my friends when I can, and write about them from time to time so that others can share my memories of how cool and great and human they were. That's the best I can do.


If people donate nothing towards ameliorating diseases of ageing[0], then what's to be expected?

People die. People get sick. Everyone you, and I, know is probably going to suffer and perish.

The poor soul in the blog post sounds like he got struck down in his prime; but rest assured, your time is coming in a matter of decades.

Accept death/disease or do something about it; but don't be shocked when it happens! Statistically, it's going to happen in increasing rates as you, your family, your friends, and everyone you know gets older.

Being blindsided by death is odd. A cognitive bias?: 'It won't happen to me'. But, quite frankly, it most probably will!

[0] http://www.sens.org/


While more open discussion on the often taboo and reduced to euphemisms topic of death definitely needs to happen, I'm not sure that your attitude is the most sensitive to the matter.

I think it's a bit haughty to tell people they should either accept death or do something about it. You'd be a fool to think that the topic of mortality isn't on every person's mind at least monthly, especially with the media constantly reminding us of it. The issue is that it's hard to accept something so distant, especially if it doesn't fit into our current model of our future. It's only until we experience the death of those close to us that we realize it. It's only natural to be shocked, especially when these deaths are unexpected and don't afford the opportunity for reconciliation with the dying. Of course as we get older and more experienced with death we become better equipped to deal with it, but that doesn't make it any less of an uncomfortable topic.

Telling people to accept a certain view of death at a certain time is limiting. It denies the uniqueness of individuals' personal philosophies and their developmental trajectories.


As someone that is overly conscious about my own mortality, and fear of it. I can see it being much more preferable "in the moment" to be oblivious to such things awaiting us. And at times I really don't understand why people aren't afraid/concerned about their inevitable mortality.

However, I wouldn't personally choose such obliviousness. I'd rather know, and perhaps plan for it, and do my best to mitigate it as far as I can.


You should check out longecity.org, if the subject interests you, zo1.

Edit: In particular, the forum! http://www.longecity.org/forum/


Thanks for the link, I'll definitely check it out!


Upvoted because what you said was true and relevant, but the downvotes you got from other people suggest it might be an idea to work on your delivery; occasions like the current tragedy tend to be occasions when people don't appreciate comments that come across as snarky.


I downvoted it because it is ghoulish and cynical to use a personal story like this to promote some particular research agenda. Perhaps especially in the case of oncology research, where mainline work is well funded and will be pursuing an endless variety of potential treatments.


> If people donate nothing towards ameliorating diseases of ageing[0], then what's to be expected?

The unfortunate chap lauded in the OP has been afflicted with a cancer of the cerebellum, not specifically a disease of aging. Cancer research has an immense amount of funding, certainly in comparison to many other widely prevalent diseases.


Diseases of ageing include cancers. Healthy ageing == dramatically reduced incidences of cancer.


Depends how strictly you classify it. Although age is an important risk factor for most types of cancer, there are many childhood cancers as well. Whereas dementias are almost always seen in adulthood, and especially prevalent in old age.

Certainly, dementia research receives considerably less funding then cancer research, so I agree with you that these prominent diseases of ageing are underfunded in terms of figuring out a cure.


Remind me of the sentiment shared by Becker before his death when he wrote The Denial of Death.


Interesting looking book[0]!

[0] http://en.wikipedia.org/wiki/The_Denial_of_Death


> Everyone you, and I, know is probably going to suffer and perish.

Not probably, definitely. It's a fact of life.

The question is not, 'will I die?' but 'will I live?'


I am in no way trying to downplay the severity of this post, but I had a very different reaction when I read this. My reaction was, "Why did the head of the division tell the group about his condition in detail?" Maybe it is because I live in America, and maybe it is because I know someone who had cancer and was reprimanded by HR for discussing his cancer -- and survival from it -- on an internal work forum.

My preference would be to work in a place where people can talk openly about their conditions, if they so choose. It seems like in the litigious country where I live, this isn't possible.

Has anyone had similar experiences?


If the employee discusses the illness on their own, there are no laws in the US to say they can't. Where you get sticky is if you discuss it without their consent. That's a big-time no-no.

I think you are either mixed up in the details, or have an overly aggressive HR rep.


I know the guy personally. The company has Socialcast and someone posted a fundraiser for a charity that helps people who are fighting cancer. My friend posted saying basically, "I had cancer and this organization helped out my family... try and help if you can." Someone from HR removed the comment and told him he cannot talk about his medical details on the forum.

Agree though... one company, one comment, one HR dept; your milage will vary.


In general it's ok to do so. I think you're confusing one ancedote for reality.


Certainly an anecdote, but also the reality at this company. I'm guessing they'd be burned in the past (see comments above) and this is why they acted the way they did.


Why would it not be OK? What could the company possibly be liable for?


Person A says "I have a brain tumor!" Boss of Person A fires person A for poor performance. Person A sues company of Boss of person A for firing due to a medical condition.

From my limited legal knowledge, it seems like this is the argument for why they try to avoid outside of work knowledge being viewed by those in a hiring/firing/promotion position over you. It is kind of a joke, because if you are out for 8 weeks for chemo, clearly something is up... but somehow just knowing something is up is different from knowing you have cancer?


That's a rough read mate.


I didnt directly experience a death until my 40s. When I've talked about I've run into even older people that have not directly experienced a death. We live in age-stratified communities where death happens infrequently to young adults. And we have a modern health system which has made death rare among younger people. I had to be a care-giver for a few months. I learned a lot about peole and medicine and dont regret it a bit.


Extremely sad news, with a kid on the way myself I can't even imagine what Nicola's going through. Thanks for sharing such a tough post.


"If you’re uncomfortable donating directly to an individual, please consider making a donation to Cancer Society of New Zealand in Steven’s name."

They will need way more money than this. If uncomfortable giving to an individual, you shouldn't feel this way because this is about giving money to a family in need. This money needs to cover a lot of personal expenses and a soon to be born child.


Such instances always make me wonder if it's worth putting so much effort in chasing dreams, when there are chances of I dying anyday, just like that. Nothing else will matter.


These instances are exactly why it is worth chasing your dreams. We are all going to die, the issue is only _when_.

Don't you want to have spent your time doing something meaningful to you?


This is of course under the assumption that what you will do (in this case work) has the capability of bringing meaning to yourself.


I'm having issues donating through the givealittle.co.nz service... My VISA gets rejected. Does anybody know if it's possible to donate via PayPal?


Even if it doesn't go through - thanks so much for the sentiment.

That said, Givealittle is located in New Zealand, and they're charging New Zealand Dollars. It's likely your bank is blocking the foreign transaction, or that they don't offer foreign currency conversion services.

If you're keen to donate I'd send a note to Givealittle's customer service. I'm sure they'll get you sorted.

Thanks once again.


Ask your issuing bank to stop rejecting the transaction. They probably think someone stole your card.


Such a moving post. Really sad. I had to hold back the tears in the middle of the office reading it! Always seems to happen to the best people.


Site is down. Anyone have a cached version?


Seems to be back up (at least it worked for me).

However, google has a cached version if you still need it:

http://webcache.googleusercontent.com/search?q=cache:8-vKw53...


one advice that has stuck with me:

In the end, it's not the years in your life that count. It's the life in your years.

Abraham Lincoln


There's no evidence that Lincoln actually said this, although it remains good advice.

http://quoteinvestigator.com/2012/07/14/life-years-count/


Sure, but I imagine there is some correlation.


Kia kaha out to his family and friends.


This is absolutely heartbreaking.


I'm sad for Steven and for all the other software engineers who tell similar stories.

I don't have math or numbers on this- does anyone?- but I can tell from personal experience that just about every time some software engineer my age becomes mortally ill, it's brain cancer. There is something unstudied about what we do that causes problems.

Personally, I had my biggest scare a couple years ago while I was working on a deeply nested, recursive algorithm. Trying to keep the whole thing in my head caused me to stay awake at night. Eventually, I had a fainting spell at a sushi bar, an ambulance was called, and ultimately the doctor thought I'd had a a massive heart attack.

This didn't turn out to be true, thank God, and they never found the biological cause. But I swear to this day that it was the algorithm gnawing on my brain. I don't know that I've been the same engineer since.

There's a terrible risk in our business and no one is researching it. I almost feel like we software engineers are like 3 pack a day smokers before enough science and research was done to prove to the public that smoking causes cancer.

Software engineering can cause brain cancer.


I think it's more likely that sitting in an office insulates you from other risks that are more common in other professions.

http://www.abta.org/about-us/news/brain-tumor-statistics/

http://www.abta.org/brain-tumor-information/risk-factors/


I think of it this way: If your job was physical, lifting boxes say, and you overdid it you would be sore the next day. It would be clear and physically noticeable. If your job is to sit, think and read and you overdo it, what happens then? How do you know?

I don't believe software engineering causes brain cancer, but it can hurt you mentally if you work too hard.


Downvoted to -3 for suggesting that software engineering can cause brain cancer?


Software engineering is a new field, but mathematics isn't, and both require intense bouts of thinking. Is there any study that suggests that mathematicians have a higher cancer rate? or for that matter, anyone that thinks all day?




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