19 ms·

The Day I Started Lying to Ruth

566 points by danielpal 12y ago

barlescabbage 12y ago
That was so well written and so sad, I literally started crying at the end of it. Goddamn, it's a reminder to live it up while we still have our health.
- milesf 12y ago
  Or live a life worth living. Find out what the meaning of life is. It's not nothing.
bnmrrs 12y ago
This was beautifully written.
malcolm 12y ago
I have a lot of respect for those that dedicate their energy toward alleviating human suffering. Stories like this remind us of how precious life is.
maguay 12y ago
And so I'm crying like a baby. That was beautifully, tragically well written. Screw all the social media apps and the rest of the nonsense we're all working on. We need to cure cancer, yesterday. If only it were that easy...
- judk 12y ago
  My mom has cancer. She loves to keep in touch on social media.
  - Theodores 12y ago
    Very, very good point. A lady I knew only through playing a game (which is an app of sorts) put a lot of effort into said game and became the lynchpin of the community. She passed on due to the c-word that we don't speak of. We were collectively devastated, some of my other online friends stopped playing for a week or two and things were not the same afterwards. Her daughter had the good sense to log on to the phone and tell us what had happened, we were kept from the truth until then. I was deeply shocked by the turn of events, much like how, on the internet 'nobody knows you are a dog', nobody knows you are dying of c-word on some hospital ward. But we didn't need to know that, in-game conversation was light hearted banter, no special treatment, which was good. From that hospital ward that lady had a good fifty to a hundred 'in game' friends all around the world, we were there, outside of visiting hours, 24/7. I think I was more shocked and with more grief layers to go through than I have experienced when some of my relatives have passed on. You would wonder how you could be so upset about losing someone that you only spent six months of your life compulsively playing an online game with. But it can happen. So, +1 to your original point. Games and apps or fancy shopping websites might seem trivial when there are so many problems in the world, however, through such things community can exist. People in those communities treat others as normal, they stay on topic and people that are seriously ill really appreciate it. I am at a loss for meaningful kind words for your mom. 'I hope she gets...' - after that I am stuck. However, if she doesn't play online games, get her to do so, and to make friends with a community of people that don't care about how ill she is.
- deleted 12y ago
  [deleted]
- eli_gottlieb 12y ago
  Who cares if it's not easy? It's important. There was a day when we sent men into space just for the challenge. I don't think that merely doing a lot of difficult and complex medical research is beyond our power.
  - maguay 12y ago
    You're right. It's very important, more so than putting a human on Mars. What I meant is that cancer is far more than just one thing to cure. I have a friend who's a cancer researcher working with immunotherapy, one of the more promising new directions for cancer research. And yet, even if we can cure, say, leukemia with it, there's still other cancers that may or may not be curable in the same way. Still, it is a hope that one day we'll have a cure for all the varied types of cancer. It's still not going to be easy.
    - eli_gottlieb 12y ago
      I get you, but I still think that even scientific research is largely a matter of committing the societal effort rather than of some Mysterious Power of Science -- which is how people seem to act about cancer research. And it's quite frustrating to me, because I hear lots of people say things like, "Why should we fund cancer research? Cancer is a thousand different incurable little things that always get you eventually. Disease and death will always be a part of old age, so why are we throwing public money down the drain?" You know, like they already do with fusion research, and most other forms of clean-energy development. Then, a decade after they said that sort of thing, someone ends up in another stupid war for control of fossil-fuels, and on net, tens of thousands of people die painfully and pointlessly because a few despairniks found it more convenient to claim science doesn't work than to spend even a little effort on actually doing some good for the world.
      - maguay 12y ago
        I'd love to see a world that invested all of its military spending into medical research instead. We could cure so much if we did so.
andyl 12y ago
Today I learned that @netzpirat died a few weeks ago. https://groups.google.com/forum/#!topic/guard-dev/2Td0QTvTIsE https://groups.google.com/forum/#!topic/guard-dev/2Td0QTvTIs... I use his OpenSource code - we chatted once or twice - and now he's gone. Goodbye @netzpirat you will be missed.
zatkin 12y ago
There are no words to express the difficulty in the loss of a loved one due to cancer. My father is battling cancer, and my mother is trying her best to fight off her emotions to deal with it. I try my best to just suppress the thoughts altogether, ignoring it and lying to myself that my father is OK. There really is no way to deal with this issue, and it's unfortunate. I'm sorry for you loss.
jamra 12y ago
What a beautiful story. I come here to Hacker News to get tech related aggregated content. The kind of thing that you don't go out looking for but still say "Ooh, that's interesting". I really don't want to relive my experiences with cancer here. Why on earth did someone think this is hacker news worthy content?
- greedy_buffer 12y ago
  It is a commonly made point that the crowd here work on "trivial" things. I think the OP injects some perspective.
- TheBiv 12y ago
  'Why' questions are always the hardest. Peace be with you on your journey!
- saraid216 12y ago
  If you don't feel that it's appropriate, flag it and let the mods decide.
- hyperbovine 12y ago
  I found this story immensely enriching and thought-provoking, which is (in theory) why I read most of the things I read. Win.
- Swizec 12y ago
  Relevant content to Hacker News is "Anything that satisfies a person's intellectual curiosity." It's not just about technology, it's about interesting things. Which, I think, is what makes HN as valuable as it is. On an unrelated note, your username means "is whining/complaining" in my native language (Slovenian) and I found that interesting given the context.
  - vidarh 12y ago
    > "is whining/complaining" in my native language (Slovenian) It's jammern in German, jamre in Norwegian and Danish, and jämra in Swedish. The Scandinavian versions and modern German all comes from Middle Low German. I'm guessing you got the word from German at some point too, as the German version originated from a version without the leading "j".
whoismua 12y ago
Very touching. It must take courage to resist treatment, even if you know you're going to die anyway. I hope I never have to decide, but I ever am in her shoes, I hope I'm brave enough to spend any time left with my family and saying goodbyes. On a related note, NYT wrote a story on "How Doctors Die" http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html?pagewanted=1 http://www.nytimes.com/2013/11/20/your-money/how-doctors-die... " What Dr. McKinley wanted was time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean. But most of all, she wanted “a little more time being me and not being somebody else.” So, she turned down more treatment and began hospice care, the point at which the medical fight to extend life gives way to creating the best quality of life for the time that is left. Dr. Robert Gilkeson, Dr. McKinley’s husband, remembers his mother-in-law, Alice McKinley, being unable to comprehend her daughter’s decision. “ ‘Isn’t there some treatment we could do here?’ she pleaded with me,” he recalled. “I almost had to bite my tongue, so I didn’t say, ‘Do you have any idea how much disease your daughter has?’ ” Dr. McKinley and her husband were looking at her disease as doctors, who know the limits of medicine; her mother was looking at her daughter’s cancer as a mother, clinging to the promise of medicine as "
- woof 12y ago
  Reminds me of these two, both well worth reading: "How Doctors Die" http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/ http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die... "How doctors choose to die" http://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die http://www.theguardian.com/society/2012/feb/08/how-doctors-c...
nctalaviya 12y ago
Remember... Go slow, be well & take it easy.
dk8996 12y ago
I always wanted to do a consumer-app startup -- I am doing that now. I'm really inspired by this story to actually do something more powerful.
TheBiv 12y ago
Such a well written story. This is one of those stories where I implicitly want to find the words to help comfort the writer and those who have experienced pain similar to this. To them, I will simply listen and hope that peace is with them. Thank you for sharing.
seiji 12y ago
My dog died on Sunday of cancer: https://matt.sh/kosh https://matt.sh/kosh
- trhway 12y ago
  morons who downvoted you are probably just very poor souls who have missed in their lives on the great happiness of having non-human members of family. I sorry for them and sorry for you loss.
- acak 12y ago
  Sorry, I don't know why you were down-voted. The loss of a loved one, no matter who or what that is, is always difficult. The article is very moving and I can't imagine how difficult it is to watch a loved one go through such suffering. And your story is a nice tribute to a faithful, loving being. It reminded me of my own friends from a while ago in my life. It's good to know your dog was loved. Good luck with the future.
- adrianpike 12y ago
  I'm sorry, friend. Reading your post, Kosh was truly a wonderful companion.
- slowmotiony 12y ago
  That was very touching, I am so sorry.
hw 12y ago
Well written article. Reminds us to live life like there's no tomorrow, love your loved ones like they'll be gone the next minute. Will be holding my wife closer and tighter tonight.
deleted 12y ago
[deleted]
arithewiz 12y ago
speechless
mslev 12y ago
My mom had breast cancer. She is alive today but this story made me think about her and her battle, and how lucky I am to still have her with me. This really was beautifully written.
scobar 12y ago
This was a great story, and I'm glad I was able to read it. My father, a hero of mine and one of my best friends, passed away due to cancer at the end of 2012. My mother was diagnosed with terminal cancer the following spring. For over 3 years, I've been accompanying them to weekly or bi-monthly visits to the oncologist and for treatments. Being the personal representative and power of attorney for advance directive for each has put me in very similar situations, like this story shares, where the doctor was blunt with me but my parent was semi-oblivious. Although there is very little to be thankful about regarding cancer, the perspective I've gained from my experience helps me to make better decisions in my life. Making my little son laugh and generally enjoy himself is the best part of my day. I make sure my wife knows how much I love and appreciate her. I may not have prioritized those actions enough without the perspective I've gained. Synthetic genomics seems to be a very promising approach to reaching a cure, or at least more effective treatment. Hopefully we'll get there soon and prevent as much suffering as possible.
- danieltillett 12y ago
  I feel for you losing your parents together like this. I am glad that you were able to gain something positive out of the experience.
tapp 12y ago
"It is often argued that life-threatening illness imbues its victims with a new vigor for life. I’ve always found this notion sort of idiotic..." In recent years, I've spent a lot of time working with late stage cancer patients as part of my job. When I first started, several friends speculated that it might give me a deeper appreciation for my own health, and "imbue me with a new vigor for life" Perversely, similar to the author, I've found the opposite to be true - it can be difficult for me to shake the knowledge that this is a fate that most of us will face (if not directly, on behalf of a loved one) if we're lucky enough not to die of something else first. I don't have any insight to share on what to do about it - I'm still wrestling with the issue. Just wanted to say thank you for posting the story.
- digitalengineer 12y ago
  I came here to say thank you for posting as well. You are so right: "this is a fate that most of us will face (if not directly, on behalf of a loved one)". If you'd care to read a bit more I highly recommend this controversial book based up on a true story: 'Love Life' http://www.amazon.com/Love-Life-Ray-Kluun/dp/B003IWYKD0 http://www.amazon.com/Love-Life-Ray-Kluun/dp/B003IWYKD0 Edit: A film was made as well, called 'STRICKEN'.
- saraid216 12y ago
  > When I first started, several friends speculated that it might give me a deeper appreciation for my own health, and "imbue me with a new vigor for life" Yeah, this is basically, "When you think stories actually reflect real life accurately". The deeper appreciation and vigor for life thing does happen. It's just sort of over-represented because it does double duty as a pretty good plot device. There's nothing wrong with you if it doesn't happen to you, just as there's nothing particularly wrong with the hundreds of faceless medical staff busily and competently doing their jobs at the hospital where the ER drama is taking place.
  - eli_gottlieb 12y ago
    I dunno. I wonder if the whole "new vigor for life" thing isn't actually just a personality trait coming out. For instance, I think I'll probably respond that way when someone in my family dies. However, I think that because I already know that when Memorial Day and Holocaust Remembrance Day come around each year (and Memorial Day was two days ago, so this is sort of fresh), I don't have any impulse to cry and mourn, but instead to go find Nazis and/or terrorists and/or the Grim Reaper and beat the crap out of them. There might just be some of us who respond to death with an impulse to, well, fight it. EDIT: I'm referring to Israeli Memorial Day, which was in fact two days ago.
danieltillett 12y ago
I really like how Ruth's oncologist told her the truth. I don't want to be lied to by any doctor, but especially not about cancer.
- scobar 12y ago
  In my experience, the "lying" was not directly that, nor was it even omission. It was simply providing small, though often false, hopes very similar to what her oncologist did toward the end of the story telling her to hold off on chemo for one more day. It's a delicate balance the oncologists must deal with as depression is a very real issue, and sometimes their goal is quality of life until the end.
  - danieltillett 12y ago
    This is not really the doctors choice to make. I guess if the patient does not request the full truth then there might be some justification for lying if they think it will help the patient, but if a patient asks direct to be told everything then they should be told. I certainly want to be told the full truth at all times even if it is bad news.
    - scobar 12y ago
      I agree that the doctor should be honest and clear about the diagnosis. The treatment options, their potential effectiveness, and the rate of decline due to the illness varies enough that it's very difficult for the doctor to offer more than percentages and statistics rather than the definitive answers most patients desire.
      - danieltillett 12y ago
        I wish I could get percentages or statistics out of the doctors I have had to deal with. Whenever I have asked direct questions I get handwaving and I am spoken to like I am an idiot.
  - JoeAltmaier 12y ago
oracuk 12y ago
This just made me cry on busy London commuter train. Cathartic but awkward. An incredibly moving story that has reminded me to tell the people that matter to me that they matter to me.
zwegner 12y ago
It's pretty weird. My mom just died of cancer a little more than a week ago. I thought it would be a bad idea to read this article, as it would just pointlessly make me (more) depressed. Yet, at the end, I really just felt numb to any emotion. There was just the same distinct sensation where nobody has any idea what I feel like, even this guy who just lost his wife. The more I think about it, the more it seems I don't really know what I'm feeling myself. All the grief, anger, and beyond that, the feeling that any emotion I have is absolutely useless. I search for an explanation, all the while my brain is telling me that I'm stupid for even looking. What's the point of explaining what I'm going through to anyone? What can they do? I don't really know what my point is. I'd be tempted to just say "life sucks", but I'd rather not be unreasonably pessimistic. But then again, my mom just died. Life. Fucking. Sucks.
- sspiff 12y ago
  > Life. Fucking. Sucks. I'm going to be reinforcing your feeling that no one understands how you feel. I'm really sorry about about the death of you're mother. Death however, is part of life. People die, and people close to you will continue to die at an increasing rate until it is finally your turn. I understand that you are grieving and that losing a loved one (especially a parent, child or partner) is an extremely painful event. But that doesn't mean that all of life sucks.
  - eli_gottlieb 12y ago
    >I'm really sorry about about the death of you're mother. Death however, is part of life. People die, and people close to you will continue to die at an increasing rate until it is finally your turn. That's a pretty lousy thing to say, considering his mother died of cancer rather than old age.
    - Sammi 12y ago
      I don't understand you. I mean, until medicine becomes perfect, then is sickness an any more unreasonable cause of death than old age? Perfect medicine would also cure death from old age, right?
neals 12y ago
After reading an article or story like this, I always end up hating myself. I'm a smart guy, like many of us here, and 10-some years ago I made the decision that money was the most important thing to me. So now I, like many of us here, run a company where we make large sums of money making people click little ads, doing stupid stuff in little applications. Where I could have been spending my smarts on something, anything, useful like medical research. More and more I feel like I should just sell it all, hire some young smart kids and try again. But I won't :(
- gadders 12y ago
  But your company is paying taxes and employing people so they can put their kids through college, pay taxes themselves etc. Not everybody can be researchers. You're doing something valuable.
  - neals 12y ago
    But I try to pay as little taxes as possible. Also, these are the same taxes that fund wars in far away countries over oil and politics.
    - CalRobert 12y ago
      1) You can donate to worthy causes. 2) You can relocate to countries that aren't declining hegemonies with bloated militaries and rotting schools.
    - tphyahoo 12y ago
      Your honesty is a saving grace. Just keep facing the truth, and adjust when you have to. You'll be fine.
    - gadders 12y ago
      Don't we all? :-) But a little tax on the large amounts you make could help. Plus, you can also donate to cancer charity.
- peteretep 12y ago
robbiep 12y ago
I am a new doctor in my fourth week of a 3 month oncology term. My region doesn't have a hospice so most of our patients are palliative, and the only ones I interact with have all been given death sentences. It terrified me for my first 2 weeks- being surrounded by patients with metastatic cancer and you begin to see it in everyone, walking down the street or doing the shopping, in the faces of everyone you meet. But now I have become more accustomed to that. So the worst now is dealing with the patients that are young. When the patient is 80+, you can at least feel happy that they have lived a lifetimes worth of potential. But when they have kids the same age as me, I see a parent with weddings and births of grandchildren ahead, and I hate it. Just this afternoon - not more than 2 hours ago- I had to place a catheter for a 53 yr old patient that has a very small tumour burden, but it is in his liver obscuring his biliary drainage and now he is dying of live failure. His wife is understandably a wreck but his stoicism is almost more terrifying... Today he asked repeatedly 'why is it taking so long?' At the same time we have an 86 year old woman with metastatic lung cancer who has been living with her disease for 8 years and will go home later this week, likely to live another 6-12 months. She may even outlive her oncologist, who was diagnosed with renal carcinoma 3 months ago and has been treating her for 8 years. The randomness of it is perhaps the most shocking.. And all the while you must contend with the knowledge that i have a 1 in 3 chance of going through cancer myself. Illness is horrible and unfortunately prevention is still much more successful than treatment.
- digitalengineer 12y ago
  If it would ever happen to me, I'd prefer ending it myself when I reach the end of the line. Just a few weeks ago a local elder couple did the same thing here. I do understand it's easy for me to say as I at least have a choice to end it with the assistance of doctors.
  - srean 12y ago
    It is really time that we had a grown up and actionable conversation on euthanasia. We can at least strive to give people two things (i) dignity and (ii) no pain. Is that a lot I am asking for.
byuu 12y ago
Thanks to a curious Google search four days ago, I just found the obituary for my father, who died after a long battle with cancer ... three years ago. Didn't specify which kind. I never really knew him: all added up, I spent maybe two or three weeks of time with him. Almost all of which were from me calling him and asking if I could visit. So many times he'd say he had plans or just not show up. I just got tired of always reaching out to him, so I decided I'd leave it to him if he wanted to reach out back. Haven't seen him or spoken to him in fifteen years. Maybe I should have kept trying, but at some point you just take the hint that you're not cared about. I never thought I would be saddened by his eventual death, and indeed, no tears were shed. But when I stop and think about it, there's this ... feeling like your stomach is being dropped. You can logically consider the finality of death, but it really is quite different when it's actually real. Just knowing that now, you can never, ever change things. He didn't die of a heart attack or in a car accident: he clearly knew he was going to die for some time. As callous as that man was to me, I never thought he'd be so selfish as to not reach out in his last days. If not for his sake, then at least for mine, for a chance to say goodbye. Perhaps I can kid myself and say he was too ashamed, but I know deep down that he just didn't care. There was always this hope that one day he'd feel some inkling of regret and we could reconcile, at least as much as one could with a father who wasn't there. But now that he's dead, there's no longer any sliver of chance. He will now always be a selfish man. I find myself angry that I am angry about his passing. It makes me feel awful that I can't even grieve at the loss of a parent like a normal human being would. But maybe this is better than the pain the author of this story went through: watching someone you truly love deteriorate and pass right before your eyes.
- digitalengineer 12y ago
  Perhaps the thought of trying to become a good/better dad when it's your turn might help reduce the anger? I don't know you (or how old you are) but thinking how you would bring up your kid (if that is what you'd like some day) could help you right now. I had a talk once with a friend in the same situation and he found even just saving some money for his future kid made him feel like he was already being a good father. Just a thought...
  - 12y ago
adrianhoward 12y ago
"When I asked them when the right time was to tell someone that death is unavoidable, they most often told me that the moment occurs after several successive attempts at stopping the cancer have failed. Only then, when the patient is cornered by cancer, that’s the time." I wonder if that's a US thing? I'm based in the UK and have been unfortunate enough to have a bunch of friends and family die of different cancers over the last ten years. In all but one case they were told almost as soon as they had a diagnosis. In the one case that wasn't the second consultant that did tell us was quite visibly cross that the first consultant hadn't done the job.
wayanon 12y ago
(I thought Ruth was going to be some new programming language)
chroma 12y ago
Like most commenters, I found this story both tragic and mesmerizing. But while much of the discussion has centered around cancer, I think this is a specific instance of a more general problem. Whether it's heart disease at 50 or Alzheimer's at 90, almost all of us will experience the gradual failure of our bodies and minds. With the exception of those killed by violence or accident, we can look forward to decades of decline, followed by a humiliating, terrifying, and excruciating end. The most debauched psychopath would not dream of subjecting their victims to such an experience. It is no wonder that most of us live as if such a time will never come. But it will. Don't forget that. Just as one plans for retirement, so too should one plan for death. To get an idea of the ailments of old age, I recommend reading Who by Very Slow Decay[1]. The author is a resident physician. http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/
junto 12y ago
Our life together was gone, and carrying on without her was exactly that, without her. I was reminded of our friend Liz’s insight after she lost her husband to melanoma. She told me she had plenty of people to do things with, but nobody to do nothing with. A hard hitting article. I hope I never have to go through that with my partner, as the patient, nor the one left behind. I find it so sad that a medical breakthrough against cancer still seems so utterly distant. The pessimist in me fears that a cure for cancer is so remote because our capitalist society does not value finding a cure, rather treating it's woes as a vastly more profitable business. The optimist in me thinks that there are some scientists out there working for big pharma who value a reduction in suffering over profits.
- JunkDNA 12y ago
  Don't believe the standard trope that pharma prefers treatments vs. cures. I worked in oncology R&D in big pharma. Every single person there from management on down sincerely believed the drug candidates they were identifying and working on might be cures one day. The oncology drug development process in a strange way mirrors the experience cancer patients themselves (and I speak from experience-- lost my dad to pancreatic cancer when I was just starting out). You have these really good days, where you have data that says you might be on to something. That things are looking up. Maybe this time it will be different! One in a million chance! And you have those bad days, where it all seems to be falling apart. All the while through the ups and downs you know in the back of your mind that inevitably (well something like 98% of the time anyway), the data from the first clinical trials will come back, and the drug you thought was going to change the world isn't any better than anything else. Maybe if you get really lucky, the drug adds 3 months to patients' lives so it's not a total failure. So you pick yourself up after 5 - 8 years of work, and start all over at the beginning in the hopes that this time will be different. That is the reality of cancer drug development in a pharmaceutical company. There is no smoke-filled room where the managers say, "oh no, we can't pursue that it might cure people!". Even if people were so warped as to think that way, you can comfort yourself in knowing that biologists are so ignorant of the basics of cancer, they wouldn't know how to distinguish a cure for a mere treatment if they wanted. The reality is that cancer is biologically complex and ferociously difficult to cure. People seem to often use the "war" analogy (as in "the war on cancer"). If it's a war, we're still using pointed sticks and rocks and cancer has intercontinental ballistic missiles, special forces, and fighter jets. Every once in a while, someone stumbles onto a stronger piece of wood or a heavier rock.
jreed91 12y ago
"Doctors claim that patients aren’t ready for the bad news earlier, when they are still digesting their shocking predicament: that their lives have changed irretrievably; that their priorities, their future aspirations, their promises to their loved ones—both the explicit and, more important, the implicit ones—would go unfulfilled. They cite their own hesitations too. Doctors want to be purveyors of hope rather than despair, a motive sometimes attributed to compassion, sometimes to a starker concern that patients will find a new, more optimistic second opinion." This is something that hits home very deeply. My father just passed away from Melanoma. When we first learned the news our oncologist was very hopeful that we could treat the disease but later we met with a specialist in the area and he was very blunt about my fathers future death. I felt as if the oncologist lied to us. She didn't give us the whole story on how severe the cancer was. Maybe if she did we would of been more proactive to treating it. I can't imagine what can go through a doctors mind when they see the scans and try to explain that to their patients day after day. How do you decide what is the best way, should you be blunt? or should you give the patient hope? Too many difficult decisions for one person to make.
kingkawn 12y ago
My grandfather, now 91 years old, told me in January that everything is always there. Everything you'll ever fear, celebrate, mourn, and laugh about is in front of you throughout your life. The only thing that makes one moment distinguishable from the next is what part we're focusing on.
pistle 12y ago
I've watched my loved ones die. I have yet to see any of my dearest die. I know that will happen. I don't know if it's better to understand the slow spiral vs. carrying false hope to the edge of the cliff. We still end up crushed at the bottom.
zinxq 12y ago
Brilliant article
jz10 12y ago
Read it in one full page: http://nymag.com/news/features/cancer-peter-bach-2014-5/#print http://nymag.com/news/features/cancer-peter-bach-2014-5/#pri... Even saved to pocket.
Fasebook 12y ago
Because there isn't enough of emergent conspiracy with our current medical system, lets try to get the loved ones in on it too. We can all lie and doctors can use this new found flexibility to finally bring down the cost of healthcare.
iskander 12y ago
Strange to read this while I'm at a conference on cancer therapies.
kator 12y ago
I just finished reading: On Death and Dying by Elisabeth Kubler-Ross Because my ex-wife of 21 years and the mother of my 3 children is quickly being taken away by cancer. I am a man of science and I recognized much of what was going down, and she wanted to know it all, every detail, she doesn't want us to hide a thing. It's horrifying to share such things with a woman I have loved for 30 years. But she trusts me not to lie to her, she wants to know so she can prepare. One of her sisters works in a breast cancer clinic and knows how this goes all too well. We've all tried hard to help her but the reality is that at some point it's just too late. I feel for the caretakers who deal with this on daily basis, I can barely handle one case I can’t imagine dealing with it daily and thousands of cases. I have dealt with death in many forms, from instant "Oh by the way this person passed today" and over time. They all suck, but if you're lucky dealing with death over time can be a bittersweet gift for everyone involved. You have time to share and say goodbye and talk about things we all forget to say to each other each day. My children are devastated but again, none of us know when we'll go, a taxi driver could hit me while I’m walking to work tomorrow. The challenge is the balance, we each want and need to believe we live a life that includes tomorrow and these patients are told the number of tomorrows are much smaller then each of us assumes when we get up in the morning. It's the dichotomy of life, without death life means nothing, but with death comes so much grief, pain and sorrow. This story touches me because I too understand what's ahead and as it has unfolded I want to hate myself for being right. There is the science of what is happening and the real human tragedy of it all. This seems like a very strange article to run across on Hacker News and to be 100% honest I was here trying hard to avoid thinking about what is unfolding in my family’s life. All I can say is thank you to the poster for pointing this article out. I think there is an interesting juxtaposition between the knowledge every Hacker wants to know and how you can’t unlearn once you have learned something. Imagine the horror of understanding all the technical details of what’s happening to your loved one while being totally helpless to do anything about it. Some say that ignorance is bliss, and maybe it is for some people. I think the big question is do you want to know? Or do you choose ignorance? For me, knowing and understanding has always been a blessing with a certain weight that I am willing to carry, even if it means understanding how someone I’ve loved for 30 years is slowly dying. At least when she’s gone I will not have to guess what happened…
duncan_bayne 12y ago
"... followed by a humiliating, terrifying, and excruciating end." This is why it's so important that we discuss voluntary euthanasia as a society. The thing is, people prefer not to think of it. Everyone acts like they're immortal. I would much prefer to choose my own time of passing, preferably quite a way from the end that you describe. "The most debauched psychopath would not dream of subjecting their victims to such an experience." And yet, that is the experience that the law mandates we have.
AnonJ 12y ago
> "Doctors claim that patients aren’t ready for the bad news earlier, when they are still digesting their shocking predicament: that their lives have changed irretrievably; that their priorities, their future aspirations, their promises to their loved ones—both the explicit and, more important, the implicit ones—would go unfulfilled. They cite their own hesitations too. Doctors want to be purveyors of hope rather than despair, a motive sometimes attributed to compassion, sometimes to a starker concern that patients will find a new, more optimistic second opinion. " This is absolute nonsense. Any person with basic maturity/intelligence would long have understood that any of us could die in any split second, and that the essence of the world is randomness and senselessness. Just accept this fact, relax and "don't care". I don't care on what day I die. What I care is if I have lived every day of my life to the fullest possible, and when I come to die I will not find that I haven’t lived. If I fulfill this, then even if I somehow suddenly face death tomorrow, I would be serene and happy to embrace it. On the contrary, if I could live for 1000 years but with every day wasted, I would be mad and I'd better take an Euthanasia. Here Ruth and her husband had the right attitude for life and they're totally worthy of applauds. There’s no point in doing a prolonged, painful, senseless and sure-to-be-defeated battle for just a few years of life. We all will die. What’s important is live every day to the best possible with determination, and accept with serenity what our current limitations can’t reach.

566 points by danielpal 12y ago

That was so well written and so sad, I literally started crying at the end of it. Goddamn, it's a reminder to live it up while we still have our health.

milesf 12y ago
Or live a life worth living. Find out what the meaning of life is. It's not nothing.

bnmrrs 12y ago

This was beautifully written.

malcolm 12y ago

I have a lot of respect for those that dedicate their energy toward alleviating human suffering. Stories like this remind us of how precious life is.

maguay 12y ago

And so I'm crying like a baby. That was beautifully, tragically well written. Screw all the social media apps and the rest of the nonsense we're all working on. We need to cure cancer, yesterday. If only it were that easy...

judk 12y ago
My mom has cancer. She loves to keep in touch on social media.
- Theodores 12y ago
  Very, very good point. A lady I knew only through playing a game (which is an app of sorts) put a lot of effort into said game and became the lynchpin of the community. She passed on due to the c-word that we don't speak of. We were collectively devastated, some of my other online friends stopped playing for a week or two and things were not the same afterwards. Her daughter had the good sense to log on to the phone and tell us what had happened, we were kept from the truth until then. I was deeply shocked by the turn of events, much like how, on the internet 'nobody knows you are a dog', nobody knows you are dying of c-word on some hospital ward. But we didn't need to know that, in-game conversation was light hearted banter, no special treatment, which was good. From that hospital ward that lady had a good fifty to a hundred 'in game' friends all around the world, we were there, outside of visiting hours, 24/7. I think I was more shocked and with more grief layers to go through than I have experienced when some of my relatives have passed on. You would wonder how you could be so upset about losing someone that you only spent six months of your life compulsively playing an online game with. But it can happen. So, +1 to your original point. Games and apps or fancy shopping websites might seem trivial when there are so many problems in the world, however, through such things community can exist. People in those communities treat others as normal, they stay on topic and people that are seriously ill really appreciate it. I am at a loss for meaningful kind words for your mom. 'I hope she gets...' - after that I am stuck. However, if she doesn't play online games, get her to do so, and to make friends with a community of people that don't care about how ill she is.
deleted 12y ago
[deleted]
eli_gottlieb 12y ago
Who cares if it's not easy? It's important. There was a day when we sent men into space just for the challenge. I don't think that merely doing a lot of difficult and complex medical research is beyond our power.
- maguay 12y ago
  You're right. It's very important, more so than putting a human on Mars. What I meant is that cancer is far more than just one thing to cure. I have a friend who's a cancer researcher working with immunotherapy, one of the more promising new directions for cancer research. And yet, even if we can cure, say, leukemia with it, there's still other cancers that may or may not be curable in the same way. Still, it is a hope that one day we'll have a cure for all the varied types of cancer. It's still not going to be easy.
  - eli_gottlieb 12y ago
    I get you, but I still think that even scientific research is largely a matter of committing the societal effort rather than of some Mysterious Power of Science -- which is how people seem to act about cancer research. And it's quite frustrating to me, because I hear lots of people say things like, "Why should we fund cancer research? Cancer is a thousand different incurable little things that always get you eventually. Disease and death will always be a part of old age, so why are we throwing public money down the drain?" You know, like they already do with fusion research, and most other forms of clean-energy development. Then, a decade after they said that sort of thing, someone ends up in another stupid war for control of fossil-fuels, and on net, tens of thousands of people die painfully and pointlessly because a few despairniks found it more convenient to claim science doesn't work than to spend even a little effort on actually doing some good for the world.
    - maguay 12y ago
      I'd love to see a world that invested all of its military spending into medical research instead. We could cure so much if we did so.

andyl 12y ago

Today I learned that @netzpirat died a few weeks ago. https://groups.google.com/forum/#!topic/guard-dev/2Td0QTvTIsE https://groups.google.com/forum/#!topic/guard-dev/2Td0QTvTIs... I use his OpenSource code - we chatted once or twice - and now he's gone. Goodbye @netzpirat you will be missed.

zatkin 12y ago

There are no words to express the difficulty in the loss of a loved one due to cancer. My father is battling cancer, and my mother is trying her best to fight off her emotions to deal with it. I try my best to just suppress the thoughts altogether, ignoring it and lying to myself that my father is OK. There really is no way to deal with this issue, and it's unfortunate. I'm sorry for you loss.

jamra 12y ago

What a beautiful story. I come here to Hacker News to get tech related aggregated content. The kind of thing that you don't go out looking for but still say "Ooh, that's interesting". I really don't want to relive my experiences with cancer here. Why on earth did someone think this is hacker news worthy content?

greedy_buffer 12y ago
It is a commonly made point that the crowd here work on "trivial" things. I think the OP injects some perspective.
TheBiv 12y ago
'Why' questions are always the hardest. Peace be with you on your journey!
saraid216 12y ago
If you don't feel that it's appropriate, flag it and let the mods decide.
hyperbovine 12y ago
I found this story immensely enriching and thought-provoking, which is (in theory) why I read most of the things I read. Win.
Swizec 12y ago
Relevant content to Hacker News is "Anything that satisfies a person's intellectual curiosity." It's not just about technology, it's about interesting things. Which, I think, is what makes HN as valuable as it is. On an unrelated note, your username means "is whining/complaining" in my native language (Slovenian) and I found that interesting given the context.
- vidarh 12y ago
  > "is whining/complaining" in my native language (Slovenian) It's jammern in German, jamre in Norwegian and Danish, and jämra in Swedish. The Scandinavian versions and modern German all comes from Middle Low German. I'm guessing you got the word from German at some point too, as the German version originated from a version without the leading "j".

whoismua 12y ago

Very touching. It must take courage to resist treatment, even if you know you're going to die anyway. I hope I never have to decide, but I ever am in her shoes, I hope I'm brave enough to spend any time left with my family and saying goodbyes. On a related note, NYT wrote a story on "How Doctors Die" http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html?pagewanted=1 http://www.nytimes.com/2013/11/20/your-money/how-doctors-die... " What Dr. McKinley wanted was time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean. But most of all, she wanted “a little more time being me and not being somebody else.” So, she turned down more treatment and began hospice care, the point at which the medical fight to extend life gives way to creating the best quality of life for the time that is left. Dr. Robert Gilkeson, Dr. McKinley’s husband, remembers his mother-in-law, Alice McKinley, being unable to comprehend her daughter’s decision. “ ‘Isn’t there some treatment we could do here?’ she pleaded with me,” he recalled. “I almost had to bite my tongue, so I didn’t say, ‘Do you have any idea how much disease your daughter has?’ ” Dr. McKinley and her husband were looking at her disease as doctors, who know the limits of medicine; her mother was looking at her daughter’s cancer as a mother, clinging to the promise of medicine as "

woof 12y ago
Reminds me of these two, both well worth reading: "How Doctors Die" http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/ http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die... "How doctors choose to die" http://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die http://www.theguardian.com/society/2012/feb/08/how-doctors-c...

nctalaviya 12y ago

Remember... Go slow, be well & take it easy.

dk8996 12y ago

I always wanted to do a consumer-app startup -- I am doing that now. I'm really inspired by this story to actually do something more powerful.

TheBiv 12y ago

Such a well written story. This is one of those stories where I implicitly want to find the words to help comfort the writer and those who have experienced pain similar to this. To them, I will simply listen and hope that peace is with them. Thank you for sharing.

seiji 12y ago

My dog died on Sunday of cancer: https://matt.sh/kosh https://matt.sh/kosh

trhway 12y ago
morons who downvoted you are probably just very poor souls who have missed in their lives on the great happiness of having non-human members of family. I sorry for them and sorry for you loss.
acak 12y ago
Sorry, I don't know why you were down-voted. The loss of a loved one, no matter who or what that is, is always difficult. The article is very moving and I can't imagine how difficult it is to watch a loved one go through such suffering. And your story is a nice tribute to a faithful, loving being. It reminded me of my own friends from a while ago in my life. It's good to know your dog was loved. Good luck with the future.
adrianpike 12y ago
I'm sorry, friend. Reading your post, Kosh was truly a wonderful companion.
slowmotiony 12y ago
That was very touching, I am so sorry.

hw 12y ago

Well written article. Reminds us to live life like there's no tomorrow, love your loved ones like they'll be gone the next minute. Will be holding my wife closer and tighter tonight.

deleted 12y ago

[deleted]

arithewiz 12y ago

speechless

mslev 12y ago

My mom had breast cancer. She is alive today but this story made me think about her and her battle, and how lucky I am to still have her with me. This really was beautifully written.

scobar 12y ago

This was a great story, and I'm glad I was able to read it. My father, a hero of mine and one of my best friends, passed away due to cancer at the end of 2012. My mother was diagnosed with terminal cancer the following spring. For over 3 years, I've been accompanying them to weekly or bi-monthly visits to the oncologist and for treatments. Being the personal representative and power of attorney for advance directive for each has put me in very similar situations, like this story shares, where the doctor was blunt with me but my parent was semi-oblivious. Although there is very little to be thankful about regarding cancer, the perspective I've gained from my experience helps me to make better decisions in my life. Making my little son laugh and generally enjoy himself is the best part of my day. I make sure my wife knows how much I love and appreciate her. I may not have prioritized those actions enough without the perspective I've gained. Synthetic genomics seems to be a very promising approach to reaching a cure, or at least more effective treatment. Hopefully we'll get there soon and prevent as much suffering as possible.

danieltillett 12y ago
I feel for you losing your parents together like this. I am glad that you were able to gain something positive out of the experience.

tapp 12y ago

"It is often argued that life-threatening illness imbues its victims with a new vigor for life. I’ve always found this notion sort of idiotic..." In recent years, I've spent a lot of time working with late stage cancer patients as part of my job. When I first started, several friends speculated that it might give me a deeper appreciation for my own health, and "imbue me with a new vigor for life" Perversely, similar to the author, I've found the opposite to be true - it can be difficult for me to shake the knowledge that this is a fate that most of us will face (if not directly, on behalf of a loved one) if we're lucky enough not to die of something else first. I don't have any insight to share on what to do about it - I'm still wrestling with the issue. Just wanted to say thank you for posting the story.

digitalengineer 12y ago
I came here to say thank you for posting as well. You are so right: "this is a fate that most of us will face (if not directly, on behalf of a loved one)". If you'd care to read a bit more I highly recommend this controversial book based up on a true story: 'Love Life' http://www.amazon.com/Love-Life-Ray-Kluun/dp/B003IWYKD0 http://www.amazon.com/Love-Life-Ray-Kluun/dp/B003IWYKD0 Edit: A film was made as well, called 'STRICKEN'.
saraid216 12y ago
> When I first started, several friends speculated that it might give me a deeper appreciation for my own health, and "imbue me with a new vigor for life" Yeah, this is basically, "When you think stories actually reflect real life accurately". The deeper appreciation and vigor for life thing does happen. It's just sort of over-represented because it does double duty as a pretty good plot device. There's nothing wrong with you if it doesn't happen to you, just as there's nothing particularly wrong with the hundreds of faceless medical staff busily and competently doing their jobs at the hospital where the ER drama is taking place.
- eli_gottlieb 12y ago
  I dunno. I wonder if the whole "new vigor for life" thing isn't actually just a personality trait coming out. For instance, I think I'll probably respond that way when someone in my family dies. However, I think that because I already know that when Memorial Day and Holocaust Remembrance Day come around each year (and Memorial Day was two days ago, so this is sort of fresh), I don't have any impulse to cry and mourn, but instead to go find Nazis and/or terrorists and/or the Grim Reaper and beat the crap out of them. There might just be some of us who respond to death with an impulse to, well, fight it. EDIT: I'm referring to Israeli Memorial Day, which was in fact two days ago.

danieltillett 12y ago

I really like how Ruth's oncologist told her the truth. I don't want to be lied to by any doctor, but especially not about cancer.

scobar 12y ago
In my experience, the "lying" was not directly that, nor was it even omission. It was simply providing small, though often false, hopes very similar to what her oncologist did toward the end of the story telling her to hold off on chemo for one more day. It's a delicate balance the oncologists must deal with as depression is a very real issue, and sometimes their goal is quality of life until the end.
- danieltillett 12y ago
  This is not really the doctors choice to make. I guess if the patient does not request the full truth then there might be some justification for lying if they think it will help the patient, but if a patient asks direct to be told everything then they should be told. I certainly want to be told the full truth at all times even if it is bad news.
  - scobar 12y ago
    I agree that the doctor should be honest and clear about the diagnosis. The treatment options, their potential effectiveness, and the rate of decline due to the illness varies enough that it's very difficult for the doctor to offer more than percentages and statistics rather than the definitive answers most patients desire.
    - danieltillett 12y ago
      I wish I could get percentages or statistics out of the doctors I have had to deal with. Whenever I have asked direct questions I get handwaving and I am spoken to like I am an idiot.
- JoeAltmaier 12y ago

oracuk 12y ago

This just made me cry on busy London commuter train. Cathartic but awkward. An incredibly moving story that has reminded me to tell the people that matter to me that they matter to me.

zwegner 12y ago

It's pretty weird. My mom just died of cancer a little more than a week ago. I thought it would be a bad idea to read this article, as it would just pointlessly make me (more) depressed. Yet, at the end, I really just felt numb to any emotion. There was just the same distinct sensation where nobody has any idea what I feel like, even this guy who just lost his wife. The more I think about it, the more it seems I don't really know what I'm feeling myself. All the grief, anger, and beyond that, the feeling that any emotion I have is absolutely useless. I search for an explanation, all the while my brain is telling me that I'm stupid for even looking. What's the point of explaining what I'm going through to anyone? What can they do? I don't really know what my point is. I'd be tempted to just say "life sucks", but I'd rather not be unreasonably pessimistic. But then again, my mom just died. Life. Fucking. Sucks.

sspiff 12y ago
> Life. Fucking. Sucks. I'm going to be reinforcing your feeling that no one understands how you feel. I'm really sorry about about the death of you're mother. Death however, is part of life. People die, and people close to you will continue to die at an increasing rate until it is finally your turn. I understand that you are grieving and that losing a loved one (especially a parent, child or partner) is an extremely painful event. But that doesn't mean that all of life sucks.
- eli_gottlieb 12y ago
  >I'm really sorry about about the death of you're mother. Death however, is part of life. People die, and people close to you will continue to die at an increasing rate until it is finally your turn. That's a pretty lousy thing to say, considering his mother died of cancer rather than old age.
  - Sammi 12y ago
    I don't understand you. I mean, until medicine becomes perfect, then is sickness an any more unreasonable cause of death than old age? Perfect medicine would also cure death from old age, right?

neals 12y ago

After reading an article or story like this, I always end up hating myself. I'm a smart guy, like many of us here, and 10-some years ago I made the decision that money was the most important thing to me. So now I, like many of us here, run a company where we make large sums of money making people click little ads, doing stupid stuff in little applications. Where I could have been spending my smarts on something, anything, useful like medical research. More and more I feel like I should just sell it all, hire some young smart kids and try again. But I won't :(

gadders 12y ago
But your company is paying taxes and employing people so they can put their kids through college, pay taxes themselves etc. Not everybody can be researchers. You're doing something valuable.
- neals 12y ago
  But I try to pay as little taxes as possible. Also, these are the same taxes that fund wars in far away countries over oil and politics.
  - CalRobert 12y ago
    1) You can donate to worthy causes. 2) You can relocate to countries that aren't declining hegemonies with bloated militaries and rotting schools.
  - tphyahoo 12y ago
    Your honesty is a saving grace. Just keep facing the truth, and adjust when you have to. You'll be fine.
  - gadders 12y ago
    Don't we all? :-) But a little tax on the large amounts you make could help. Plus, you can also donate to cancer charity.
peteretep 12y ago

robbiep 12y ago

I am a new doctor in my fourth week of a 3 month oncology term. My region doesn't have a hospice so most of our patients are palliative, and the only ones I interact with have all been given death sentences. It terrified me for my first 2 weeks- being surrounded by patients with metastatic cancer and you begin to see it in everyone, walking down the street or doing the shopping, in the faces of everyone you meet. But now I have become more accustomed to that. So the worst now is dealing with the patients that are young. When the patient is 80+, you can at least feel happy that they have lived a lifetimes worth of potential. But when they have kids the same age as me, I see a parent with weddings and births of grandchildren ahead, and I hate it. Just this afternoon - not more than 2 hours ago- I had to place a catheter for a 53 yr old patient that has a very small tumour burden, but it is in his liver obscuring his biliary drainage and now he is dying of live failure. His wife is understandably a wreck but his stoicism is almost more terrifying... Today he asked repeatedly 'why is it taking so long?' At the same time we have an 86 year old woman with metastatic lung cancer who has been living with her disease for 8 years and will go home later this week, likely to live another 6-12 months. She may even outlive her oncologist, who was diagnosed with renal carcinoma 3 months ago and has been treating her for 8 years. The randomness of it is perhaps the most shocking.. And all the while you must contend with the knowledge that i have a 1 in 3 chance of going through cancer myself. Illness is horrible and unfortunately prevention is still much more successful than treatment.

digitalengineer 12y ago
If it would ever happen to me, I'd prefer ending it myself when I reach the end of the line. Just a few weeks ago a local elder couple did the same thing here. I do understand it's easy for me to say as I at least have a choice to end it with the assistance of doctors.
- srean 12y ago
  It is really time that we had a grown up and actionable conversation on euthanasia. We can at least strive to give people two things (i) dignity and (ii) no pain. Is that a lot I am asking for.

byuu 12y ago

Thanks to a curious Google search four days ago, I just found the obituary for my father, who died after a long battle with cancer ... three years ago. Didn't specify which kind. I never really knew him: all added up, I spent maybe two or three weeks of time with him. Almost all of which were from me calling him and asking if I could visit. So many times he'd say he had plans or just not show up. I just got tired of always reaching out to him, so I decided I'd leave it to him if he wanted to reach out back. Haven't seen him or spoken to him in fifteen years. Maybe I should have kept trying, but at some point you just take the hint that you're not cared about. I never thought I would be saddened by his eventual death, and indeed, no tears were shed. But when I stop and think about it, there's this ... feeling like your stomach is being dropped. You can logically consider the finality of death, but it really is quite different when it's actually real. Just knowing that now, you can never, ever change things. He didn't die of a heart attack or in a car accident: he clearly knew he was going to die for some time. As callous as that man was to me, I never thought he'd be so selfish as to not reach out in his last days. If not for his sake, then at least for mine, for a chance to say goodbye. Perhaps I can kid myself and say he was too ashamed, but I know deep down that he just didn't care. There was always this hope that one day he'd feel some inkling of regret and we could reconcile, at least as much as one could with a father who wasn't there. But now that he's dead, there's no longer any sliver of chance. He will now always be a selfish man. I find myself angry that I am angry about his passing. It makes me feel awful that I can't even grieve at the loss of a parent like a normal human being would. But maybe this is better than the pain the author of this story went through: watching someone you truly love deteriorate and pass right before your eyes.

digitalengineer 12y ago
Perhaps the thought of trying to become a good/better dad when it's your turn might help reduce the anger? I don't know you (or how old you are) but thinking how you would bring up your kid (if that is what you'd like some day) could help you right now. I had a talk once with a friend in the same situation and he found even just saving some money for his future kid made him feel like he was already being a good father. Just a thought...
- 12y ago

adrianhoward 12y ago

"When I asked them when the right time was to tell someone that death is unavoidable, they most often told me that the moment occurs after several successive attempts at stopping the cancer have failed. Only then, when the patient is cornered by cancer, that’s the time." I wonder if that's a US thing? I'm based in the UK and have been unfortunate enough to have a bunch of friends and family die of different cancers over the last ten years. In all but one case they were told almost as soon as they had a diagnosis. In the one case that wasn't the second consultant that did tell us was quite visibly cross that the first consultant hadn't done the job.

wayanon 12y ago

(I thought Ruth was going to be some new programming language)

chroma 12y ago

Like most commenters, I found this story both tragic and mesmerizing. But while much of the discussion has centered around cancer, I think this is a specific instance of a more general problem. Whether it's heart disease at 50 or Alzheimer's at 90, almost all of us will experience the gradual failure of our bodies and minds. With the exception of those killed by violence or accident, we can look forward to decades of decline, followed by a humiliating, terrifying, and excruciating end. The most debauched psychopath would not dream of subjecting their victims to such an experience. It is no wonder that most of us live as if such a time will never come. But it will. Don't forget that. Just as one plans for retirement, so too should one plan for death. To get an idea of the ailments of old age, I recommend reading Who by Very Slow Decay[1]. The author is a resident physician. http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/

junto 12y ago

Our life together was gone, and carrying on without her was exactly that, without her. I was reminded of our friend Liz’s insight after she lost her husband to melanoma. She told me she had plenty of people to do things with, but nobody to do nothing with. A hard hitting article. I hope I never have to go through that with my partner, as the patient, nor the one left behind. I find it so sad that a medical breakthrough against cancer still seems so utterly distant. The pessimist in me fears that a cure for cancer is so remote because our capitalist society does not value finding a cure, rather treating it's woes as a vastly more profitable business. The optimist in me thinks that there are some scientists out there working for big pharma who value a reduction in suffering over profits.

JunkDNA 12y ago
Don't believe the standard trope that pharma prefers treatments vs. cures. I worked in oncology R&D in big pharma. Every single person there from management on down sincerely believed the drug candidates they were identifying and working on might be cures one day. The oncology drug development process in a strange way mirrors the experience cancer patients themselves (and I speak from experience-- lost my dad to pancreatic cancer when I was just starting out). You have these really good days, where you have data that says you might be on to something. That things are looking up. Maybe this time it will be different! One in a million chance! And you have those bad days, where it all seems to be falling apart. All the while through the ups and downs you know in the back of your mind that inevitably (well something like 98% of the time anyway), the data from the first clinical trials will come back, and the drug you thought was going to change the world isn't any better than anything else. Maybe if you get really lucky, the drug adds 3 months to patients' lives so it's not a total failure. So you pick yourself up after 5 - 8 years of work, and start all over at the beginning in the hopes that this time will be different. That is the reality of cancer drug development in a pharmaceutical company. There is no smoke-filled room where the managers say, "oh no, we can't pursue that it might cure people!". Even if people were so warped as to think that way, you can comfort yourself in knowing that biologists are so ignorant of the basics of cancer, they wouldn't know how to distinguish a cure for a mere treatment if they wanted. The reality is that cancer is biologically complex and ferociously difficult to cure. People seem to often use the "war" analogy (as in "the war on cancer"). If it's a war, we're still using pointed sticks and rocks and cancer has intercontinental ballistic missiles, special forces, and fighter jets. Every once in a while, someone stumbles onto a stronger piece of wood or a heavier rock.

jreed91 12y ago

"Doctors claim that patients aren’t ready for the bad news earlier, when they are still digesting their shocking predicament: that their lives have changed irretrievably; that their priorities, their future aspirations, their promises to their loved ones—both the explicit and, more important, the implicit ones—would go unfulfilled. They cite their own hesitations too. Doctors want to be purveyors of hope rather than despair, a motive sometimes attributed to compassion, sometimes to a starker concern that patients will find a new, more optimistic second opinion." This is something that hits home very deeply. My father just passed away from Melanoma. When we first learned the news our oncologist was very hopeful that we could treat the disease but later we met with a specialist in the area and he was very blunt about my fathers future death. I felt as if the oncologist lied to us. She didn't give us the whole story on how severe the cancer was. Maybe if she did we would of been more proactive to treating it. I can't imagine what can go through a doctors mind when they see the scans and try to explain that to their patients day after day. How do you decide what is the best way, should you be blunt? or should you give the patient hope? Too many difficult decisions for one person to make.

kingkawn 12y ago

My grandfather, now 91 years old, told me in January that everything is always there. Everything you'll ever fear, celebrate, mourn, and laugh about is in front of you throughout your life. The only thing that makes one moment distinguishable from the next is what part we're focusing on.

pistle 12y ago

I've watched my loved ones die. I have yet to see any of my dearest die. I know that will happen. I don't know if it's better to understand the slow spiral vs. carrying false hope to the edge of the cliff. We still end up crushed at the bottom.

zinxq 12y ago

Brilliant article

jz10 12y ago

Read it in one full page: http://nymag.com/news/features/cancer-peter-bach-2014-5/#print http://nymag.com/news/features/cancer-peter-bach-2014-5/#pri... Even saved to pocket.

Fasebook 12y ago

Because there isn't enough of emergent conspiracy with our current medical system, lets try to get the loved ones in on it too. We can all lie and doctors can use this new found flexibility to finally bring down the cost of healthcare.

iskander 12y ago

Strange to read this while I'm at a conference on cancer therapies.

kator 12y ago

I just finished reading: On Death and Dying by Elisabeth Kubler-Ross Because my ex-wife of 21 years and the mother of my 3 children is quickly being taken away by cancer. I am a man of science and I recognized much of what was going down, and she wanted to know it all, every detail, she doesn't want us to hide a thing. It's horrifying to share such things with a woman I have loved for 30 years. But she trusts me not to lie to her, she wants to know so she can prepare. One of her sisters works in a breast cancer clinic and knows how this goes all too well. We've all tried hard to help her but the reality is that at some point it's just too late. I feel for the caretakers who deal with this on daily basis, I can barely handle one case I can’t imagine dealing with it daily and thousands of cases. I have dealt with death in many forms, from instant "Oh by the way this person passed today" and over time. They all suck, but if you're lucky dealing with death over time can be a bittersweet gift for everyone involved. You have time to share and say goodbye and talk about things we all forget to say to each other each day. My children are devastated but again, none of us know when we'll go, a taxi driver could hit me while I’m walking to work tomorrow. The challenge is the balance, we each want and need to believe we live a life that includes tomorrow and these patients are told the number of tomorrows are much smaller then each of us assumes when we get up in the morning. It's the dichotomy of life, without death life means nothing, but with death comes so much grief, pain and sorrow. This story touches me because I too understand what's ahead and as it has unfolded I want to hate myself for being right. There is the science of what is happening and the real human tragedy of it all. This seems like a very strange article to run across on Hacker News and to be 100% honest I was here trying hard to avoid thinking about what is unfolding in my family’s life. All I can say is thank you to the poster for pointing this article out. I think there is an interesting juxtaposition between the knowledge every Hacker wants to know and how you can’t unlearn once you have learned something. Imagine the horror of understanding all the technical details of what’s happening to your loved one while being totally helpless to do anything about it. Some say that ignorance is bliss, and maybe it is for some people. I think the big question is do you want to know? Or do you choose ignorance? For me, knowing and understanding has always been a blessing with a certain weight that I am willing to carry, even if it means understanding how someone I’ve loved for 30 years is slowly dying. At least when she’s gone I will not have to guess what happened…

duncan_bayne 12y ago

"... followed by a humiliating, terrifying, and excruciating end." This is why it's so important that we discuss voluntary euthanasia as a society. The thing is, people prefer not to think of it. Everyone acts like they're immortal. I would much prefer to choose my own time of passing, preferably quite a way from the end that you describe. "The most debauched psychopath would not dream of subjecting their victims to such an experience." And yet, that is the experience that the law mandates we have.

AnonJ 12y ago

> "Doctors claim that patients aren’t ready for the bad news earlier, when they are still digesting their shocking predicament: that their lives have changed irretrievably; that their priorities, their future aspirations, their promises to their loved ones—both the explicit and, more important, the implicit ones—would go unfulfilled. They cite their own hesitations too. Doctors want to be purveyors of hope rather than despair, a motive sometimes attributed to compassion, sometimes to a starker concern that patients will find a new, more optimistic second opinion. " This is absolute nonsense. Any person with basic maturity/intelligence would long have understood that any of us could die in any split second, and that the essence of the world is randomness and senselessness. Just accept this fact, relax and "don't care". I don't care on what day I die. What I care is if I have lived every day of my life to the fullest possible, and when I come to die I will not find that I haven’t lived. If I fulfill this, then even if I somehow suddenly face death tomorrow, I would be serene and happy to embrace it. On the contrary, if I could live for 1000 years but with every day wasted, I would be mad and I'd better take an Euthanasia. Here Ruth and her husband had the right attitude for life and they're totally worthy of applauds. There’s no point in doing a prolonged, painful, senseless and sure-to-be-defeated battle for just a few years of life. We all will die. What’s important is live every day to the best possible with determination, and accept with serenity what our current limitations can’t reach.