As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free.
As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors will stop caring for him. He and they will have different goals. Cure seems like a goal that isn't realistic anymore. But there are goals that are realistic. So I hope his doctors are trying to help him live a meaningful, comfortable and pain-free life, like they would for any other patient. And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect. We need to change our language around cancer.
I was diagnosed with lymphoma about 8 years ago. It's been undetectable since six months later, and I haven't had any treatment since the three years of chemo ended, but that's not to say it won't return.
I've always disliked the "winning/losing" paradigm, and also terms like "struggle" and "battle". To me, they all imply that there was or is something that I personally could have done to change the outcome. If I hadn't been fortunate enough to respond well the treatment, that I'd "lost" or "didn't fight hard enough."
I'm grateful to the physicians and scientists who devised my treatments, and to the doctors and nurses who cared for me. I myself played no part in any of this, though. A freak genetic accident caused an affliction, and I followed the prescribed script. I never once felt that I was battling something, or that I had to try harder. I don't feel like I've won anything. If it returns, I won't feel that I've lost anything or that I have to try harder. If it returns and I die, it won't be because I've given up or didn't fight enough. It will be because the currently available solutions to this problem are insufficient for the particular conditions of my body.
My stepmother died of cancer last year and asked that her obituary refer to her "long negotiation with cancer" instead of "long battle with cancer", I think because she also disliked the "battle" and "struggle" notion for similar reasons.
Perhaps calling it a “battle” or naming cancer the “enemy” gives some a cathartic way to cope with it. Gives one energy so to speak. My parents died of cancer and I have lost several friends to it, and none of them used this terminology, but I imagine I will if it comes to it.
If someone with cancer gains strength or comfort from using that terminology, I support them. I should have clarified that my beef is with others using those words to describe me or an abstract other.
I get this, by why only cancer? There are other generally lethal (though treatable) diseases in the world. Yet you typically don't get to hear about somebody's, say, "battle with diabetes", or "battle with AIDS".
I can't speak for you but the term "battle with <disease>" is frightfully common. Copy and paste both your example quotes into google and see for yourself.
I'm not sure if these variations are nearly as popular, at least in epitaphia. But I'm not a native English speaker, so I can't really argue about it. In my first language (Polish) people die "after a long battle with cancer", and I feel like it's very rare to come across the same phrase in reference to some other illness.
It makes cancer an identity, and the cancer status subsumes their life as well as their body. Everything is about the cancer and how they deal with it.
When you are told by a doctor that you have a thing and it's a very deadly thing, the psychological component -- for both you and everyone you deal with -- is huge. The specter of death and the battle with it can blot out the sun, so to speak.
My experiences suggest that wresting your identity away from this pattern of thought is life giving and helps people survive in very practical terms.
It's not voodoo magic. It strongly influences the mental models that drive your decision-making process.
When people believe death is inevitable, they tend to make choices that help that become a self-fulfilling prophecy because they believe nothing they do will really matter anyway.
I used to spend a lot of time on chronic illness lists. I left all of them because it was a general truism that you couldn't talk about what worked since the absolute sickest people who had the most and worst horror stories were the same people who would outright mock things like removing carpeting from the house and going to all wood and tile floors or making dietary changes.
They were extremely dismissive of the idea that anything made a real difference and they insisted they couldn't be bothered with stuff like that because they wanted to "have a life" and their illness already took too much of their time as is. They simply didn't have time or energy for such "neurotic" and "obsessive" behavior.
It was absolutely verboten to point out that the people being proactive about diet and the like we're healthier than these people were. God forbid you should imply it was "their fault" that their prognosis was so extremely bad compared to the rest of the community. That would be cruel and would be "blaming the victim."
So I ultimately unsubscribed from whatever lists I hadn't already been thrown off of for the crime of suggesting that maybe us patients could do something effective without drugs, surgeries or a doctor's permission, like eat better and use non toxic cleaners and the like. I got off all the drugs and quit getting the email notices about another death in the chronic illness community.
Cancer treatment outcome is unpredictable, some patients with a good prognosis die from the disease or treatment complications and some patients with extremely bad prognosis eventually get cured. The science is unable to track exact reasons so we may suppose that certain brain activity may produce hormones or mediators that play a role in success or failure of treatment. So staying strong and in a fighting mood and perceiving your treatment as a fight may be important. Or may not. But still it is so much important from the existential point of view, to not go quietly.
It's his announcement. If he feels it is a battle he has lost, well I can fully understand why, I'm not going to criticise his choice of word.
Only the title and first sentence contain an expression you heavy handedly dislike. I don't see him ruling out palliative care, or any of the other criticisms you level. The rest of the short post is a poignant summary and thanks. It's disappointing, but rather typical of HN, that the top comment and most of the comments are now around the language of cancer, not Alex, his life or work.
I am a thyroid cancer survivor. My mom had lung cancer. My dad had kidney cancer. We've had cats with cancer.
One thing I've learned is that the single most important resource we get in life is the amount of time we have on this planet, and what we do with it.
Once you get to the point where there are no more treatments that doctors can give you to try to stop or slow down cancer, and the only thing they can do is try to make you as comfortable as possible, I don't see any other way that we could possibly look at this situation than an almost complete loss.
I agree with you, there is no win in this dead-end situation.
But the fact you acknowledge it as a battle may have a huge impact on yourself, your mood, your stress level and this could help you getting better/worst.
I honestly feel like it's more like a war than a battle. You might be healed for a while and then it comes back, exactly like England/France/Germany for centuaries.
As a medical oncologist[1], your paragraph and that paternalistic and annoying article you cited makes me mad. The outrage with 'our language around cancer' is a recent phenomenon, and I think it is actually not that important and even harmful. What you are proposing is to homogenise how patients cope with cancer, assuming that one way of dealing with it is qualitatively better than another. This 'one way' is a kind of stoic acceptance, an appreciation for the simple things in life, a focus on quality of life and meaningful experiences, good supportive care outcomes, ending finally with a peaceful departure surrounded by loving friends and family.
This sounds great, but it is a grave error to assume that all patients should think this way. First of all, many don't get the chance. Some patients are too alone, too poor or have too much chaos in their lives to be able to get anywhere near the 'one way'. For some patients, their cancer arrives suddenly and kills them before they have time to accept or deal with anything.
But the main point is that you can't a priori decide what is the right way for someone to deal with their illness. For some people, they need to fight it like a battle, before they can ever accept the fact they will lose. For others, they 'fight' because they know it is important to the people they love, even though they know it is probably a lost cause. Who are we to tell them that they aren't thinking about things the right way?
The final thing to say is that a cancer is incurable until it isn't. The worst thing is when a new treatment comes out (like immune checkpoint blockade), and a patient whom you know would have benefited immensely from that treatment dies just before they could have received it. There are patients I see today who decided to fight, sought out any avenue they could and are alive and going on holidays with their kids today because of it. That is a dreadfully uncomfortable notion, and something that a health system can't possibly deal with, but try telling those people that their 'language around cancer' is unhelpful. By the same token of course, there are many who never accept their illness, and waste precious time pursuing expensive, futile therapies.
In medicine, avoid generalisation and homogenisation at ALL cost. As colourful and varied as people are in their healthful lives, they are only more so when ill.
[1] In other words I give drug therapies to people with cancer. About 70% of the people I see have advanced, incurable cancer, with life spans ranging from a few years to a few months.
> There are patients I see today who decided to fight, sought out any avenue they could and are alive and going on holidays with their kids today because of it.
20 or so years ago my uncle was given 6 mos. to live. I don't remember the exact type of cancer, but the survival rate was low. My grandfather, being an ex-military hard ass who had to fight and claw his entire life said to hell with that.
Long story short, my uncle today is married with 2 great kids. I don't know if there is much research around attitude and outcomes, but I can't imagine a fighting attitude is harmful.
Some people prefer to contemplate and accept. Some people prefer to fight hard until the end. Who are we to decide how people are supposed to live, or die?
Indeed—it's a personal decision that every patient and family have to make based on their individual situation. (Just as mine had to.)
That's why a categorical claim that there's no harm to having fighting attitude is patently wrong...not to mention harmful because it contributes to the stigmatization of accepting and preparing for impending death.
If I was ever diagnosed with cancer, I would fully expect to fight a hard battle which I might win or I might lose. Obviously the odds will be different depending on the type and stage of the cancer, but I don't believe for one second that individual choices will always have zero impact on the outcome.
I wouldn't want anyone preparing me to die. If I die so be it but I agree that paternalistic is the appropriate word here.
(As a side note, why don't we talk about things like a person's battle with heart disease? Poor cardiovascular health can be improved. It is hard but it can be done. Sounds like a battle to me.)
I suspect that the requirement of stoicism stoic in the face of cancer is more about third parties feeling bad otherwise. Stoic people makes us feel good, because it allows us to pretend to ourselves that the disease is less painful and unpleasant then we would like it to be. It allows us to not feel pain through empathy etc.
When someone is stoic because he or she wants to, that is fine. Requiring that sick people hide their pain and fear is cruel in its own way, imo.
>Who are we to tell them that they aren't thinking about things the right way?
you're an oncologist. Would it be an unreasonable expectation that you have observed/learned a correlation, if any, between patient outcomes and the various ways of thinking the patients practiced, and thus that you may have an idea what is the "right way" and what isn't?
This is a familiar and successful way of thinking that we are taught in school and even as scientists. The challenge is that some decisions and domains are simply not amenable to statistics and concepts like correlation break down in the face of infinite payoffs (like patients getting to go to a grandchilds wedding) and infinite penalties (like the death of a child). How does one account for a situation in which 10,000 good decisions are for nothing in the face of one mistake?
No. Everything about that article is infuriating. We are fighting an enemy. Again and again we lose. The patient loses, the care team loses, the doctors lose, the family loses, the whole of humanity loses.
You have to believe you can win to continue to fight and you do have to fight quite literally with family, with friends, with yourself. But more generally we as a society have to be able to recognize an enemy and a battle when we see one. To remove, hide, obscure, or soften this language would be an insult to all those who have fought and lost in any capacity against this monster.
We fight, we lose, we die, repeat ... until we don't.
I think, holistically, you are correct. Technology and science should advance. Individually, though, the fight can quite literally be all but over. This is not pessimistic or fatalistic, but very real.
Rage, rage against the dying of the light. We as individuals get to choose what that means, though :)
Even in death, a patient that exhausts every option can provide medical data for future treatments. Their struggle is not futile just because they died.
And I don't believe we can ever be sure that the odds of death are 100%. Where there's life, there's always hope.
I'm not sure winning/losing and 'enemy' are the right terms to use. I fully agree that all resources should be mobilized towards making terminal illnesses like cancer a thing of the past, but a term like 'enemy' can give a misleading impression of what cancer is. It is not the presence of a consciously malevant force. It is the inability of the body to maintain proper function amidst the chaos of change. Having the correct conceptual framework is important for solving the problem.
No, it doesn't. There are fights (both literal and metaphorical, hence this is not a problem with the metaphor) you cannot win no matter how hard you fight because you are outmatched by too much for more effort to overcome.
On the same note, highly recommend "Being Mortal", which talks a lot about that mindset and palliative care. It can be really damaging to think in terms of winners and losers since you might end up going through a lot more pain than necessary. It can be really beneficial for everyone involved to readjust goals and make the best out of the situation. Dying is part of life, and we need to be better at accepting and dealing with it.
I have a chronic life threatening disease. Side effects from a bone marrow transplant when I was kid.
I recognize the stages of bereavement in others (patients, caregivers, family, friends). The only difference between me and them is I had decades to process my mortality, to learn how to cope. Sort of.
Surviving is a strange gift. Live long enough and you'll see that you're not special, you weren't unlucky. It just happens. None of us get out alive.
The trick is figuring out how to press on, despite the foreknowledge, the futility.
Maybe I'm finally becoming buddhist in my old age.
Since you mentioned Buddhism you probably know what it's about, but for the benefit of someone that might be curious,
The Buddhist perspective is that none of this is actually real. It's all an elaborate illusion. The battle is an illusion, the cancer is an illusion, and death itself is an illusion.
Like the film Matrix, we live in a virtual world. Everything we see is a creation of our mind. All our perspectives, experiences, everything we feel, our cravings and impulses, none of this is actually real.
Our mind has both the power to create anything but also the power to understand how fragile and empty those creations are. Everyone has the Buddha nature.
Anyway what Buddha discovered is that we suffer because we are attached to the creations of our mind (such as the idea of being alive and the fear of dying). And he proposed a fix that is very simple, just see reality as it is: empty. Devoid of substance. That's it. This insight is elaborated in four points and is called the four noble truths.
Now, Buddhism isn't an intellectual exercise. Just having a cognitive understanding of the Buddhist philosophy is too limited and isn't how you practice Buddhism. Just believing in Buddha or any teaching is useless.
You practice Buddhism by having the right motivation (which is to bring benefits to all beings - since they, too, deserve to be free from suffering), having the right vision and acting the right way. This can be elaborated in eight points and comprise the noble eightfold path if you want to look up.
To follow this path, you need to convince your unconscious mind of those goals: too often we know what's the right thing to do but fail to act on it. And it's much easier to understand Buddha's insight than to fully incorporate it into your unconscious mind.
We do this by training the mind through meditation. Meditating helps you to release yourself from the slavery of always having to follow your own desires and impulses, but also enables the deepest parts of your mind to perceive reality as it really is. It's Buddha's mind hack.
It's never too late to practice a little bit of meditation. Just search for some guided meditation video on YouTube and follow it (5 mins is enough). You don't really need to believe anything nor abandon your religion and it may benefit you and, due to the way it changes you, benefit those around you.
Oh boy. Here's more "feel good" language change suggestions.
No. Just not. This kind of thing is extremely hypocritical and insulting to all those who are actually fighting cancer. Both the patients, the doctors and research teams.
>Cure seems like a goal that isn't realistic anymore.
Where did you get that from? Both cure and 5 year survival rates are higher than ever and are slowly encroaching advanced stages of cancer.
>And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect.
Except it is. He lost his life. This is a fact. Language won't change it. Pretending that he didn't lose anything is more insulting to him and his family than not. Respecting his choice is different from pretending that he didn't lose everything.
I've seen people give up and accept their low chances of survival. It's very rare. More often than not I see people who want to live and exhaust every option available until the last minute of their lives. This is literally a fight and these people would punch you in the face if your righteousness suggested otherwise in front of them. And it blows my mind that a doctor( are you an actual doctor? In the States the term doctor isn't regulated so a chiro can call themselves doctor) doesn't see that the field is rapidly improving with better and more options all the time. Now more than ever before it's worth fighting to your last minute in case new therapies arrive that have great results for you.
> I've seen people give up and accept their low chances of survival. It's very rare.
This strikes me as being normatively loaded in a way that's unhelpful, at a minimum. There's a cost-benefit analysis that has to take place by patients and their families and there's a choice to be made between optimizing for length of life and quality of life.
I don't have any issue with the "fight" language, but the associations I make are to the body's fight with the disease, not the patient's actions.
In general though, all this talk of "fight", "battle", "never giving up", etc, strikes me as being somewhat American (in a pejorative sense of the term) -— it bespeaks an immature relationship with death.
>This strikes me as being normatively loaded in a way that's unhelpful, at a minimum. There's a cost-benefit analysis that has to take place by patients and their families and there's a choice to be made between optimizing for length of life and quality of life.
That's what a person who isn't in that position would think. In reality most people just want to live. So it's as much of a fight as a non-combat situation can be. And there is literally a battle between the cancer and your body going on.
>In general though, all this talk of "fight", "battle", "never giving up", etc, strikes me as being somewhat American (in a pejorative sense of the term) -— it bespeaks an immature relationship with death.
And I'm not even american. I don't think there's anything wrong with people wanting to live and get rid of a fairly "unfair" disease. Because cancer can indeed be unfair in many cases. An e.g. smoker knows it's probably coming. But the very nature of cancer as a probabilistic disease means some people get the sort end of the stick without bringing it on themselves.
>Death is a very personal thing. Would you tell the author of TFA that they are "giving up?"
Tell it to them? No. When the treatment effort starts, you make it clear that they can drop off the therapy at any time they want. When and if that happens you sugar coat it as much as you can and help them make peace with the world and their families etc. At that point no benefit will come to the patient from telling them the truth.
But it totally matters when discussing e.g. health policies or future directions of treatments. These people do actually give up and we should face that. We should ask what parts of our current treatment methods are the most unbearable and how we can improve those in the future. How to better approach the patients from the beginning. Things like that.
While I have vast respect for those that can have a different viewpoint, I'm not sure I'd be able to look on it as anything but an intensely personal attack from the universe that definitely takes things - notably, a future - away from me.
With time I might find the wisdom to feel otherwise. But time is what would be taken away.
Agreed. On the other hand, I'd like to think I'd not take it as a personal attack, but I'd not go as far to say I've not lost anything. Just because my life is insignificant in the grand scheme of things and we all have to die anyways doesn't mean I'm not actually losing time with my loved ones and the general enjoyment from life. I suppose you can 'change' the definition of losing or claim we don't own our lives anyways, but that seems like a stretch, and to some degree, seems like invalidating their sense of loss.
I hope for the same, but only after solving inequality and other "human condition" issues. I do not look forward to an Elysium-like dystopia with an immortal (ruling) overclass; undead corporations are already problematic enough.
"Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war."
No it doesn't.
I imagine that the battle metaphor is comforting to some people for precisely the opposite reasons.
Being drafted into infantry (stereotypical mental image of a battle) there is likely no good outcome. The best case is probably a deeply unpleasant, emotionally and possibly physically painful, experience. The worst case outcome is death.
Ability to personally influence the outcome is limited at best. You can fight long, hard and smart and still find yourself on the losing side.
I have no direct experience of cancer but if I did, I'm not sure I would appreciate a critique of my choice of language.
If I found comfort in a metaphor then I'd hardly like for my doctor to point out that the metaphor is a cliche or a trope.
There's a terrific book called "Tell them who I am." It was written, I think, in the last year of the life of a man dying of cancer. He wanted to spend his final days doing something meaningful.
It's about the lives and identities of homeless women at shelters where he volunteered.
I am sympathetic to your rage. I wish I knew how to help such people. But I don't.
Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life.
> Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life.
I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis. Sure, dead comes sooner or later, and that's the whole point of why one would feel it sucks and that we're losing, because often cancer means for you, dead came way too early. I have not known anyone with cancer, but I can't help but feel somewhat related as I have a loved one with a mental condition. Although there are techniques such as 'radical acceptance', it's easier said than done, and when it comes from an external party advising you to accept it, it feels invalidating, because they don't know how it feels (even for others with cancer or mental conditions, each person experiences it differently).
>I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis.
Not having faced such yet, I can't say for sure. But I've noticed among a few friends I've lost to illnesses that some felt 'singled out' while others didn't. Passing seemed generally harder on the former.
Perhaps the 'it's gonna happen to us all' perspective mitigates feelings of being unfairly 'chosen' to some degree.
I spent a year at death's door. When I stopped hallucinating conversations with the grim reaper, I knew I would live.
I've made my peace with my mortality.
And that's a private matter and we all get there -- or not -- in our own way. But total strangers who haven't made their peace with this will have big feels about our mortality in ways that can be problematic for the person who has accepted their death (in the face of a terrible illness).
Death is the ultimate joke. We spend so much time worrying about it. Avoiding it. Writing poetry and books about it. Maybe, If your a Religious being, even shaping our entire life around it because of the “ultimate judgement” in the end.
Death is a construction to make sense of our physical reality.
Another perspective is that we're like an ML model that takes tons of raw data and extract features from it, and infer stuff like "x is alive" and "y is dying". We insist that the features we extracted are the real thing, instead of a summarization that enables us to understand the world.
that the physical reality around you that you perceive through your mind might not be the end-all-be-all and death is just a small part of it all. I don’t know. You’ll find out sometime.
I don't know what he or she meant, but I wrote a comment elsewhere on the thread about a Buddhist perspective that touches on this. Ctrl+f Buddhism.
The tldr is that all our experiences are constructions of our mind. It's our mind that assigns meaning to stuff. Being alive or dead isn't a pre-existing concept, it's something we constructed.
An exercise is to imagine some beings very different from ourselves looking at Earth and not recognizing life. Perhaps because they exist in a different timescale, or they structure data differently. They wouldn't be able to see we dying.
Is not the same dying at 80 from 'natural causes' than at 35 due to cancer after a grueling experience fighting it. Which is why I don't see how I'd find that comforting if I were diagnosed cancer when still 'young'. That's just me though.
I don’t really get it. Of course he is losing something. His life. I lost my mum last year because of cancer. I don’t get why it’s a bad thing to fight for something you dearly love. Your life. What else you got?
I want to trust that Alex wrote this post because he has accepted what comes next. And he may still have a crack team of doctors vying for a cure, but either way... he has made his peace.
I want to trust that Alex posted this because he made peace and it's his final words. It is profound, it is beautiful, and it is how he wants it.
That's your way of looking at it, other people have a different way. When you are on your death bed you can write about your own thoughts on the matter.
I read the explanation you linked. May be I'll be able to digest it better with some more thought, but my initial reaction is that they seem to be splitting hairs. Just like any metaphor, it doesn't fit perfectly, but the authors seem to be making quite a bit of leaps of reasoning to try to make it a bad/harmful metaphor, such as:
> Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war.
I don't think that ever crossed my mind. At least in my case I always saw that metaphor as implying you and your body are fighting, and your actions do have some degree of positive influence in helping your body fight and stay alive. A battle doesn't have to be a battle that is winnable with any degree of certainty, I can accept that is a battle with very low odds of winning and that the degree of control I have over how my body will react to treatment and if it'll be effective may be close to none. I can understand that, all they have to do is explain it. It doesn't mean the battle metaphor doesn't work. It doesn't mean if you lose the battle you're a 'loser' (the word loser IMO has a different connotation and doesn't apply to just anyone that loses a fight or that chooses not to fight).
> Patients with “curable” disease are cured because treatment eradicates every last cell, not because the patient did or did not somehow fight valiantly.
I believe the point is that going through the treatment is what makes them fighters. Yes the treatment is what cured them, but that's just missing the point that going through a painful treatment is why people (or at least me) call them valiant fighters. That doesn't mean I think if you don't fight or give up at some point you're somehow a coward. I could just extend the metaphor and say instead they chose to fight another different battle, facing mortality. Who's to say what's harder? I wouldn't dare to pass judgement on either choice.
> However, thinking about it from a different perspective, the use of the battle metaphor implies a level of control that patients simply do not have.
Are they saying they don't have any control? they can choose not to do any treatment. Choosing a treatment is staying in the fight. If they're implying treatments simply don't work, ok. But if there's even a small chance they do work, it's still a battle. It's easy for the doctors not facing death to tell someone to just give up, for some people hope alone keeps them mentally alive, not sure why is that hard to understand.
> When a person runs a marathon, we credit them for their training, commitment, and aspirations. We never declare anyone from the second-place to last-place finishers in a marathon to be losers.
If someone trains and doesn't finish a marathon or finishes last, technically they lost the race, yes, I'd not dare to call them or imply they're a loser. It's the same situation for someone that loses to cancer. The only reason I think losing to cancer is appropriate is because is final, you lost your life, which is not the case for a marathon, where you actually accomplished something that you can later be proud of and share with your family.
> As they turn from treatment to treatment, they are not spending time with loved ones; rather, they are chasing the illusive “win,” a path that affects not only them but also their family and caregivers, as well as family finances.
That's all good and fine, and it should be clearly spelled out and given as an option, it has nothing to do with whether the battle metaphor is accurate or good for some people or not.
> Did she lose her battle? Or did she choose to control how she spent her final days?
She chose not to keep fighting and that's fine, no need to pass judgement, it's a very hard fight after all, so even if we say she lost her battle to cancer, she chose to fight and win the battle of facing death in your terms and that also deserves my utmost respect. The authors instead choose to imply that saying someone lost a battle is calling them a loser.
> We firmly believe that health care professionals owe their patients the difficult and honest discussions that come as patients grapple with their mortality. We also believe that patients’ decisions should be honored and supported by their health care team.
That is one thing I agree with.
> Let us focus on the life that people enjoyed before being told “you have cancer” and remember them as victors in life, not losers in death. Let us stop letting cancer appear to be the winner.
It's fine to focus on the good stuff, doesn't magically mean you weren't dealt a sucky hand and that it's fine to grieve and feel the loss. Would you tell a father that lost his small son to cancer to move on and celebrate his life (as short as it was)? it's a loss, stop pretending is not, it's healthy to acknowledge the loss and grief before you can move on.
Immune receptors that bind healthy cells and tissue are said to be autoreactive, and the antigens on healthy cells and tissue that they recognize are called self-antigens.
From someone who's been dealing with cancer for the last 6 years, I hate when people compare it to a fight/war/battle with winners and losers. What exactly am I fighting? My cells? How exactly am I going to war? by sitting in a chair eating a sandwich while getting a chemo infusion?
In my mind, this was always just a disease to manage. Being diagnosed at 33 with no family history or no genetic markers the only thing I could point to was some random mutation that reprogrammed my cells. Modern medicine as this point is serving it's purpose -> buying me more time. I personally don't have any illusions of grandeur that I'll be "cured" but I'm thankful the extra time that I've been blessed with and just try to make the most of it everyday. That's all you can really do with or without cancer.
I think many don’t think of cancer cells as their cells. They’re not supporting life anymore so they don’t belong, and it’s important to get rid of them. Plus the immune system is often (not often enough) destroying the cancer(ous) cells which further indicates that they don’t belong. So it’s the rest of the cells vs the cancer cells.
It’s good that you’re trying to make the most of everyday. Best wishes.
The earlier the better. Depending on the cancer type early diagnosis of e.g. skin cancer has almost 100% survival( cure) rates. Early diagnosis of lung cancer gives the option of removing the whole section of the lung. Decreases the maximum oxygen supply rate but not enough to affect daily life.
Generally speaking if it's early we can cut it more easily, radiate the specific area instead of many different ones that cause more side effects and we can target it more effectively with drugs before it metastasizes and spirals into too many different types.
Some new immunotherapy and blocker options offer significantly increased survival rates for advanced stages of cancer as well. Nivolumab is an example that offers a 20-30% 5 year survival rate on advanced non small cell lung cancer. This isn't cure but it isn't a slow burn either. The cancer masses seem to just not grow- but not shrink either and the patients just keep chugging along. The interesting part is that the reason why the rate is 20-30% is because that's the percentage of people who respond to it. A combination of nivolumab and another drug that I forget it's name that failed as a solo option seems to increase it's rate to 40%. Keep in mind this is advanced lung cancer, the type that a couple decades ago had a couple months survival rates.
So are there some specific symptoms one should look out for? Some comprehensive periodic tests? Maybe combined with some genetic pre-screening?
Given how important it can be to diagnose these things early, I think most people have no idea how they could or should do it - apart from maybe breast and testicular cancer.
If you were to design a policy for someone that wanted to maximize their survival probability with regards to potential cancers while still leading a normal life, and money was no object, what would that policy look like?
>So are there some specific symptoms one should look out for?
Not something overly specific. And it also depends on cancer type. Lung cancer is mostly without any symptoms until it's very advanced and you start coughing blood.
>If you were to design a policy for someone that wanted to maximize their survival probability with regards to potential cancers while still leading a normal life, and money was no object, what would that policy look like?
I would say the best bang for your buck would be an annual MRI test. It won't show absolutely everything but it would show most stuff.
I was diagnosed with colorectal cancer. I found out when I saw blood in my stool. I went to the doc and the rest is history. When I was diagnosed it was already at stage 2. Honestly, unless you're getting CT scans twice a year, there's really no cheap and easy way to stay ahead of the game. My docs have had me get CT scans every 3-6 months and have caught subsequent metastases early by doing so. However, unless you are currently under treatment or at the age that requires a specific type of cancer screening, it'd be hard to get that approved by an insurance company. It's worth asking though.
Jeeeesus. I'm incapable of understanding the mindset the man is in - total awareness of impending death. It must take tremendous courage - I think I would have been reduced to a quaking pile of jelly faced with the fact of mortality. What a person, what a reality.
My mom once told me that the only thing she knew of that was worse than having cancer, was being the long-term caregiver for someone who had cancer. She was taking care of her sister at the time, who had stomach cancer.
Then my mom passed away a few years later, due to lung cancer -- caused in part by her sister who was allowed to smoke like a chimney, even in the hospital, because she was at stage 4. My dad was the primary care giver for my mom.
My dad recently passed away in ICU, when I had to make the hard choice to remove the ventilator instead of doing a tracheotomy, because everyone in the family knew that the last thing he wanted in life was to die in a nursing home. And if we had them do a tracheotomy, he would never be able to go home again. He never woke up, and passed within an hour of removing the ventilator. He was 74.
I've had thyroid cancer, which was surgically removed and then I had radioactive iodine therapy afterward. I'll be on synthetic thyroid replacement medication for the rest of my life.
I don't think I have much illusion about what is around the corner for me. I'm just trying to put it off for as long as I can, try to get some good work done in the time I have left, and enjoy spending as much time as I can with my wife and what is left of the family.
> I'm incapable of understanding the mindset the man is in - total awareness of impending death.
Seriously? Every human being on Earth over a toddler's age is totally aware of impending death. To date nobody has ever lived forever. The only question, for every human being, cancer or no, is how many years you get before you eventually die.
Modern man just makes my head shake in disbelief sometimes...
Not sure your post deserves to be taken seriously as it seems sarcastic/arrogant and incredibly pedantic, but I will assume that's my own emotional response and try to distance myself from that knee-jerk reaction.
IMHO, most people live on autopilot with some sense of ignoring the reality of death. I think this decision we often tend to label as "feeling we are invincible". There's some underlying feeling that death is so far off that it almost doesn't seem real to us. Yes, intellectually, in a cold, logical sense the fact that we die is known to the majority of humanity. But I think that is irrelevant to the post to which you replied.
By total awareness of impending death, I believe the parent post was clearly implying that the author has had the gravity of the reality of death thrust upon them and made real to them in a way that few of us experience or choose to dwell on.
Once you are aware your time alive has been essentially quantified- in much more stark terms than "eventually", especially when the time remaining is rather short- I believe this is likely a unique psychological/emotional experience, one that is difficult to understand without ones self being put in that position.
That's a great reply, I think the internet would be a better place if people (myself included) asked themselves this very question before posting a comment online.
There is something you can do to help people with leukemia: register as a stem cell donor. Germany has a very strong system with 71.000 stem cell or bone marrow donations per year while there are only 11.000 cases of leukemia in Germany - most go to the rest of the world. There are 5.7 million registered donors[1] (total population is around 80 million).
Though I have not personally donated, I have been swabbed in the US via the BeTheMatch organization [0] and I know people who have donated. The swabbing process is very easy and free. However, donation is not as easy as with blood. The process covers a few weeks, typically a flight and overnight stay before donation, and then the process itself which can be difficult at times. One key thing that I discovered is that you do not ever meet your match and there are strict rules against this (due to prior events with racism, sexism, religious issues, etc).
Bone marrow donation is not an easy thing. However, it is a heroic thing. You are very personally and quite literally, saving someone's life that you will likely never meet (what a world we live in!). With blood donation, it's a bit less connected, at least here in the US. They tell you that you are saving up to 3 people's lives. But outside of the donation station, you never really think about it again or hear from anyone about it. With marrow donation, you, and only you, are the reason that another real person is alive [1]. It's much more, well, intimate(?) than with blood donation.
Also, as HN tends to be a bit more on the paranoid side, I checked and they do NOT store any genetic information about you. Only the lymphocyte tests are stored via HIPAA compliance and are deleted when you decide to go off the registry. It seems that they are not very shady, so to speak, and really are trying to save lives and nothing else.
Please, if you are able, consider becoming a donor today.
This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.
I found this website that lists the equivalent organisations around the world - or at least, it lists DKMS for Germany, and the one I know to be correct for the Netherlands: https://swabtheworld.com/become-a-donor/
For one reason or another they don't link directly to those organisations, but if you have the name, you should be able to find out the rest.
For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/
LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.
Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match.
Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.
Signed up over a decade ago with Australian Red Cross blood service. Haven't heard anything but it's good knowing that if the call ever comes, I personally might save someone's life. (Donating O- helps in a more general way.)
For non-US donors, check out WMDA[1] for information on joining a marrow donor list. Many countries have some sort of donor-sharing agreements. I know someone in California who received a donation from someone in Germany.
It is a great source of useful information for patients and families. Anyone going through a similar process knows the horrors of googling for information. You end up with all sorts of pseudo-science (e.g. "paleo cured my cancer"), false hopes (e.g. mouse trials which sort of address particular variants of mildly related diseases), and sensationalist terrifying stories of the horrors of chemo.
It is also a great resource for finding support networks, both in-person and over the internet. (Seeing a therapist or joining a support group is so important for both patients _and_ those close to the patients!)
It's 2:40 AM, I open Hacker News because I couldn't sleep and notice this is on top of the page. I have no words.
I didn't really know Alex from his work at Automattic, I knew him as the guy who ran the fan website for "Top Gear". I don't have any numbers how many people he helped to get access to the episodes, but I'm absolutely certain the show would have never gotten as popular without his contribution.
I hadn't looked at Final Gear in years but that really brings back memories. I didn't know who ran it until now. When TG was on the air I would refresh FG until the episode was released.
I'm glad I got to know about one of the people who contributed to making my life a little better, even if it was close to the end of his. Thanks Alex for all of your contributions.
Incredible sad read and I wish you the best of luck if any journey is ahead of you. We will all come pretty soon after you! Wordpress is an awesome tool and project. I don't know you or your work but I'm sure it's just awesome. Thanks for improving the open source world for us with your skills!
Whenever faced with death in my life, I have always found comfort in Richard Dawkins wonderful speech.
Mortality is one of those things that I grow more accustomed to the older I get. I hate it. There’s not a day that goes by that I don’t think about death or things that cause death. Death is everywhere — the news, social media — two things I try to avoid. However, we cannot avoid death. We are all just living to die.
Pretty sure there's more to it than that, bud. But you know that already of course. Death is a great motivator to live a life with purpose and meaning, for one. Dwelling on mortality can bring a sharp focus to your life. It's a fear that transcends all other fears which may stand in your way.
That's the downturn of Western philosophy that we are raised on. We perceive death as an opposite to life while naturally they are the parts of the same cycle.
> Code Shelter is a collective of volunteer software developers that aims to help with maintaining popular open source projects whose authors need a hand or don't have the time to maintain them any more.
Reading through some of the past posts, he seems to have quite a stoic view of his situation (saying he's 'along for the ride'). Indeed, there's nothing he can do about it, it makes no sense to stress about it. I hope I'm able to feel similarly when it comes time for me.
So sad. Reminds of some promising research into fasting that applies specifically to his form of leukemia, ALL. https://www.utsouthwestern.edu/newsroom/articles/year-2016/l... I'm sure he's had a ton of people suggesting all kinds of things, but I wonder if he has looked into fasting. There's not much downside to trying at this point.
“Strikingly, we found that in models of ALL, a regimen consisting of six cycles of one day of fasting followed by one day of feeding completely inhibited cancer development,” he said. At the end of seven weeks, the fasted mice had virtually no detectible cancerous cells compared to an average of nearly 68 percent of cells found to be cancerous in the test areas of the non-fasted mice."
Damn. I’ve been following Alex as a peer in the early WP scene since back in the day. Didn’t realize this was him until I saw his about page mention Viper007Bond.
If you’re reading this bud I hope you know your work has made a lasting impression on many.
Cancer is life, not death on the micro level. Okay, maybe a shortsighted and cellfish (my play of words) struggle for life, but aren't we as a civilization doing the same thing right now? Anyway, if we keep vilifying cancer without understanding it, we'll end up "losing". I'm saddened to hear that a good developer and an open-source contributor has been struck with this fate. As a civilization with bold claims to fame, we should really focus on these mass killers rather than building bigger bombs and walls. I mean, come on, we can't even treat the flu and thousands die every year!
Immensely saddening. I just read through some of his cancer tagged posts on his blog and it seemed like he was finally reclaiming his life back. So sad to read that it came back.
It's too early to bury Alex. Donor immune system may still rise up and kill leukemia cells while leaving some liver tissue for it to regenerate. Not so much of a chance but still...
Highly recommend Tolstoy's Death of Ivan Ilyich. One alternative sequence is you can start at part II, read to the end, then read part I. Edit: My guess is part I is there to show the reader what his/her own reaction to death is, before he begins his lesson. http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf
Very sad to hear. You are a strong fellow for putting things out there in such a public way, I am sure you have helped many deal with their own struggles.
to friends and family of loved ones in similar situations -- dont hesitate to say anything you need to say to them. dont live with regrets. and to friends and family of their caregivers, dont underestimate how hard this is for them too. they will need your care just as much.
Thanks for the top notch torrents and the plugins that make my life easier. I've never known who you were, Alex, but it turns out you've been a part of my life for years.
working on a project in this space now. Definitely hits home - trying to solve problems in this space is important when you read things like this. At times it can be a very demotivating space to tackle because trying to do anything new in this domain is a real slog and for good reason. There are some smart founders and VCs out there, it would be great if more of them decided to spend their time working on more healthcare issues.
Unlikely, as his cancer diagnosis puts him below other patients with an higher chance of survival, and the chemo will likely be too much for a patient recovering from a transplant.
I'm not an expert here, but I doubt that he would qualify for a transplant given the heavy toll that the future leukemia treatment would put on the transplanted liver. It's sad, but sometimes there really aren't any more options.
100% not the same as Alex's sad situation, but for kidneys a dual stem-cell-transplant and kidney-transplant has been done[1]. It was NOT done due to cancer (but due to kidney scarcity) and was NOT done for the liver. I don't think it could ever even be done for the liver because stem-cell-transplant cannot (to the best of my knowledge) be done from a cadaver-donor. Maybe some medical center would be willing to try a living-donor for SCT and partial-liver...but I'm not sure it would get past the ethics committee.
Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality!
If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help.
Without donor's white cells, the Leukemia gets worse, but without liver, people die fast. It seems that restoring liver function would be the higher priority now.
Liver has evolved to be destroyed and regenerated. Is able to create new hepatocites massively if needed. Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Is an awesome organ if we think about it.
The options are, I suppose, a liver transplant/liver graft, that is expensive procedure but very effective.
or a liver support device that could buy a precious time until a liver donor is available
It seems that in USA there are around 4000 liver available from donors each year, and a list of around 17000 receptors. Liver transplant is expensive. You need to invest maybe $12000-250000 only for the operating teather part. Plus post-operatory procedures.
An alternative could be to take a chunk of liver of Mr. Mills and cultivate it in a laboratory, far from chemoterapy and vicious white cells and then create a bio-system that could act as an artificial liver for some time. A possibility maybe could be to make a self-transplant in the future. Even small chunks can regenerate a much bigger chunk of liver
Several types of artificial livers could help also to alleviate the liver work, like a Molecular Adsorbents Recirculation System (MARS) or/and fractionated plasma separation and adsorption (FPSA, Prometheus)
This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious:
> Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks.
Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why are there only 4000 livers in the US?
You can donate part of the liver, but it isn't "like nothing ever happened". This followup[1] of donors from 2011 found that 53% suffered long-term complications (though 93% would have gone through with it again). Notably missing from those stats is the percentage of donors who died after donation, either due to direct effects, indirect effects, or totally unrelated things.
Donating one of your two kidneys is maybe a "like nothing happened" experience, but donating a partial liver is much more complicated with worse outcomes.
> it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)
There is a risk to manage, but is possible, yes. (Liver regenerates itself, so maybe even without leaving a scar. I'm unsure about that).
> Why only 4000 livers...
Probably a bottleneck and main factor is the money and finding somebody with experience that would want to do it. Is not a trivial procedure and there is also a risk for surgeons to be sued if things go down.
The technique is relatively new, starting at 1989 with Alyssa Riggan, a toddler girl 21 months old from Texas that is still alive and living a normal life currently. The donor was her 29yo mum. The technique has being adopted regularly since 2014 (if I'm not wrong). More than 4000 patients had received such treatment in USA since them. Ms. Riggan has a normal life now and does not even need her anti-rejection medecines anymore. The survival rate in adult patients at 3 years is > 95%, and 100% in children patients.
For the donor, will feel some pain (that can be alleviated with medication) and will feel very tired for the first month. Around half liver of the donor is taken. Most regeneration will happen in the first 2 weeks.
Having cancer, Mr. Mills would be elected [2] to receive the liver of a dead people instead a live donor, unless a relative or a friend would agree to donate him part of their liver.
[2] I'm not expert in your health system, Just guessing that he has a low score in the list.
Well the body will eventually "loose the battle" for us all. But Consciousness... since quantum information isn't lost, consciousness might be another story and not get lost with the body.
It seems fasting can potentially help starving cancer. https://gero.usc.edu/cll/ It can help liver problems too, so maybe worth a shot as a last-resort attempt to stay alive.
For fucks sake man. You and the others leaving comments on his site about green tea, olive oil, diets, fasting, "ayurveda", and god(s) that will save us if we really believe... wtf.
This is a guy that has a death sentence over his head. He's being doing treatment for years, his body is weak, probably has or will have pain regularly. Is this the moment to do fasting or drink freaking green tea?
The link goes to a medical research project that suggests existing drugs are more effective when combined with a few days of partial fasting. It needs more research, but I don't think it's fair to lump it in with fad diets and green tea.
Whenever I’m studying a given topic, I like to buy maybe 6 or 7 books on it to skim-read from someplace where that’s afforable like HPB or Thriftbooks. Gives you a good overview of field and also each of the books fills in the holes of the other books.
Recently did this on the topic of “cancer”. All recent books published in the last 15 years by Big 5 Publishers.
Every single book had intense criticism for the NIH. It seems they do a lot of good, but their singular focus on only funding “hypothesis based research” has driven and then kept extremely promising ideas on the sidelines for 25 years.
Very sad to read at times, and made me really appreciate how scientific progress comes in amazing bursts that are short lived but that everyone depends on for decades to come.
Also something else I forgot to add is how the death rate from cancer really hasn’t budged in 20 years by being generously massaged via something known as “average death rate”. Adjustments are made to have the US population conform to a model, against which the amount of deaths per year are calculated. While intended to smooth variance YoY, this model helps to a great extent the system currently operating.
What is the alternative? Wild guess based research? Faith based research? I'm having a hard time envisioning how you'd design an experiment, and extract knowledge, without a hypothesis.
"Hypothesis-driven research is based on scientific theories, while exploration is based on a search for discovery backed by few theories or none at all."
"With hypothesis testing, researchers present what the study hopes to accomplish, how it will be done and possible outcomes. [..] Meanwhile, exploratory research examines unknown areas with no or little-known theories to back them -- perceived as a riskier bet."
> I'm having a hard time envisioning how you'd design an experiment, and extract knowledge, without a hypothesis
"Often, a proposal to gain observational experience is dismissed as being a "fishing expedition"…but how can one devise a workable hypothesis to test without first acquiring basic knowledge of the system, and how better to obtain such basic knowledge than to observe the system without any preconceived notions?" - https://www.edge.org/response-detail/11702
OP probably means exploratory science, in the sense of not starting with a claim to confirm (or deny) but with procedures to discover features of a system (e.g. about human red cells) that hypothesis may not be targeting.
As a human it makes me so sad to read this post. I hope the rest of his life is meaningful, comfortable and pain-free.
As a doctor it makes me so mad. We talk about winning and losing against cancer like its some game or some foe personified. Just because there aren't any more chemo therapy options doesn't mean there aren't treatment options. Just because he'll be home and not in the hospital doesn't mean his doctors will stop caring for him. He and they will have different goals. Cure seems like a goal that isn't realistic anymore. But there are goals that are realistic. So I hope his doctors are trying to help him live a meaningful, comfortable and pain-free life, like they would for any other patient. And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect. We need to change our language around cancer.
Read a more articulate explanation of the problem with language around cancer here: https://jamanetwork.com/journals/jamaoncology/fullarticle/21...
I was diagnosed with lymphoma about 8 years ago. It's been undetectable since six months later, and I haven't had any treatment since the three years of chemo ended, but that's not to say it won't return.
I've always disliked the "winning/losing" paradigm, and also terms like "struggle" and "battle". To me, they all imply that there was or is something that I personally could have done to change the outcome. If I hadn't been fortunate enough to respond well the treatment, that I'd "lost" or "didn't fight hard enough."
I'm grateful to the physicians and scientists who devised my treatments, and to the doctors and nurses who cared for me. I myself played no part in any of this, though. A freak genetic accident caused an affliction, and I followed the prescribed script. I never once felt that I was battling something, or that I had to try harder. I don't feel like I've won anything. If it returns, I won't feel that I've lost anything or that I have to try harder. If it returns and I die, it won't be because I've given up or didn't fight enough. It will be because the currently available solutions to this problem are insufficient for the particular conditions of my body.
My condolences to Alex and his loved ones.
My stepmother died of cancer last year and asked that her obituary refer to her "long negotiation with cancer" instead of "long battle with cancer", I think because she also disliked the "battle" and "struggle" notion for similar reasons.
Perhaps calling it a “battle” or naming cancer the “enemy” gives some a cathartic way to cope with it. Gives one energy so to speak. My parents died of cancer and I have lost several friends to it, and none of them used this terminology, but I imagine I will if it comes to it.
If someone with cancer gains strength or comfort from using that terminology, I support them. I should have clarified that my beef is with others using those words to describe me or an abstract other.
I get this, by why only cancer? There are other generally lethal (though treatable) diseases in the world. Yet you typically don't get to hear about somebody's, say, "battle with diabetes", or "battle with AIDS".
I can't speak for you but the term "battle with <disease>" is frightfully common. Copy and paste both your example quotes into google and see for yourself.
I'm not sure if these variations are nearly as popular, at least in epitaphia. But I'm not a native English speaker, so I can't really argue about it. In my first language (Polish) people die "after a long battle with cancer", and I feel like it's very rare to come across the same phrase in reference to some other illness.
It makes cancer an identity, and the cancer status subsumes their life as well as their body. Everything is about the cancer and how they deal with it.
Doesn't that simply reflect their life and thoughts?
I think I kind of get the criticism.
When you are told by a doctor that you have a thing and it's a very deadly thing, the psychological component -- for both you and everyone you deal with -- is huge. The specter of death and the battle with it can blot out the sun, so to speak.
My experiences suggest that wresting your identity away from this pattern of thought is life giving and helps people survive in very practical terms.
It's not voodoo magic. It strongly influences the mental models that drive your decision-making process.
When people believe death is inevitable, they tend to make choices that help that become a self-fulfilling prophecy because they believe nothing they do will really matter anyway.
What are examples of such self fulfilling prophecies?
I used to spend a lot of time on chronic illness lists. I left all of them because it was a general truism that you couldn't talk about what worked since the absolute sickest people who had the most and worst horror stories were the same people who would outright mock things like removing carpeting from the house and going to all wood and tile floors or making dietary changes.
They were extremely dismissive of the idea that anything made a real difference and they insisted they couldn't be bothered with stuff like that because they wanted to "have a life" and their illness already took too much of their time as is. They simply didn't have time or energy for such "neurotic" and "obsessive" behavior.
It was absolutely verboten to point out that the people being proactive about diet and the like we're healthier than these people were. God forbid you should imply it was "their fault" that their prognosis was so extremely bad compared to the rest of the community. That would be cruel and would be "blaming the victim."
So I ultimately unsubscribed from whatever lists I hadn't already been thrown off of for the crime of suggesting that maybe us patients could do something effective without drugs, surgeries or a doctor's permission, like eat better and use non toxic cleaners and the like. I got off all the drugs and quit getting the email notices about another death in the chronic illness community.
How would you know what part of their life and their thoughts it reflects?
What if they don't give a shit about the illness but everybody else makes the biggest deal of it?
> How would you know what part of their life and their thoughts it reflects?
Well, I asked about it in the comment you replied to, so obviously I don't know.
Cancer treatment outcome is unpredictable, some patients with a good prognosis die from the disease or treatment complications and some patients with extremely bad prognosis eventually get cured. The science is unable to track exact reasons so we may suppose that certain brain activity may produce hormones or mediators that play a role in success or failure of treatment. So staying strong and in a fighting mood and perceiving your treatment as a fight may be important. Or may not. But still it is so much important from the existential point of view, to not go quietly.
Bloody hell.
It's his announcement. If he feels it is a battle he has lost, well I can fully understand why, I'm not going to criticise his choice of word.
Only the title and first sentence contain an expression you heavy handedly dislike. I don't see him ruling out palliative care, or any of the other criticisms you level. The rest of the short post is a poignant summary and thanks. It's disappointing, but rather typical of HN, that the top comment and most of the comments are now around the language of cancer, not Alex, his life or work.
We're to the point that we have to be more PC about the way we're describing cancer...
This 100%
I am a thyroid cancer survivor. My mom had lung cancer. My dad had kidney cancer. We've had cats with cancer.
One thing I've learned is that the single most important resource we get in life is the amount of time we have on this planet, and what we do with it.
Once you get to the point where there are no more treatments that doctors can give you to try to stop or slow down cancer, and the only thing they can do is try to make you as comfortable as possible, I don't see any other way that we could possibly look at this situation than an almost complete loss.
But maybe I'm too close to the problem.
I agree with you, there is no win in this dead-end situation. But the fact you acknowledge it as a battle may have a huge impact on yourself, your mood, your stress level and this could help you getting better/worst. I honestly feel like it's more like a war than a battle. You might be healed for a while and then it comes back, exactly like England/France/Germany for centuaries.
As a medical oncologist[1], your paragraph and that paternalistic and annoying article you cited makes me mad. The outrage with 'our language around cancer' is a recent phenomenon, and I think it is actually not that important and even harmful. What you are proposing is to homogenise how patients cope with cancer, assuming that one way of dealing with it is qualitatively better than another. This 'one way' is a kind of stoic acceptance, an appreciation for the simple things in life, a focus on quality of life and meaningful experiences, good supportive care outcomes, ending finally with a peaceful departure surrounded by loving friends and family.
This sounds great, but it is a grave error to assume that all patients should think this way. First of all, many don't get the chance. Some patients are too alone, too poor or have too much chaos in their lives to be able to get anywhere near the 'one way'. For some patients, their cancer arrives suddenly and kills them before they have time to accept or deal with anything.
But the main point is that you can't a priori decide what is the right way for someone to deal with their illness. For some people, they need to fight it like a battle, before they can ever accept the fact they will lose. For others, they 'fight' because they know it is important to the people they love, even though they know it is probably a lost cause. Who are we to tell them that they aren't thinking about things the right way?
The final thing to say is that a cancer is incurable until it isn't. The worst thing is when a new treatment comes out (like immune checkpoint blockade), and a patient whom you know would have benefited immensely from that treatment dies just before they could have received it. There are patients I see today who decided to fight, sought out any avenue they could and are alive and going on holidays with their kids today because of it. That is a dreadfully uncomfortable notion, and something that a health system can't possibly deal with, but try telling those people that their 'language around cancer' is unhelpful. By the same token of course, there are many who never accept their illness, and waste precious time pursuing expensive, futile therapies.
In medicine, avoid generalisation and homogenisation at ALL cost. As colourful and varied as people are in their healthful lives, they are only more so when ill.
[1] In other words I give drug therapies to people with cancer. About 70% of the people I see have advanced, incurable cancer, with life spans ranging from a few years to a few months.
> There are patients I see today who decided to fight, sought out any avenue they could and are alive and going on holidays with their kids today because of it.
20 or so years ago my uncle was given 6 mos. to live. I don't remember the exact type of cancer, but the survival rate was low. My grandfather, being an ex-military hard ass who had to fight and claw his entire life said to hell with that.
Long story short, my uncle today is married with 2 great kids. I don't know if there is much research around attitude and outcomes, but I can't imagine a fighting attitude is harmful.
A fighting attitude is harmful if it leads you to prioritize prolonging life at any cost.
Some people prefer to contemplate and accept. Some people prefer to fight hard until the end. Who are we to decide how people are supposed to live, or die?
Indeed—it's a personal decision that every patient and family have to make based on their individual situation. (Just as mine had to.)
That's why a categorical claim that there's no harm to having fighting attitude is patently wrong...not to mention harmful because it contributes to the stigmatization of accepting and preparing for impending death.
If I was ever diagnosed with cancer, I would fully expect to fight a hard battle which I might win or I might lose. Obviously the odds will be different depending on the type and stage of the cancer, but I don't believe for one second that individual choices will always have zero impact on the outcome.
I wouldn't want anyone preparing me to die. If I die so be it but I agree that paternalistic is the appropriate word here.
(As a side note, why don't we talk about things like a person's battle with heart disease? Poor cardiovascular health can be improved. It is hard but it can be done. Sounds like a battle to me.)
I suspect that the requirement of stoicism stoic in the face of cancer is more about third parties feeling bad otherwise. Stoic people makes us feel good, because it allows us to pretend to ourselves that the disease is less painful and unpleasant then we would like it to be. It allows us to not feel pain through empathy etc.
When someone is stoic because he or she wants to, that is fine. Requiring that sick people hide their pain and fear is cruel in its own way, imo.
>Who are we to tell them that they aren't thinking about things the right way?
you're an oncologist. Would it be an unreasonable expectation that you have observed/learned a correlation, if any, between patient outcomes and the various ways of thinking the patients practiced, and thus that you may have an idea what is the "right way" and what isn't?
This is a familiar and successful way of thinking that we are taught in school and even as scientists. The challenge is that some decisions and domains are simply not amenable to statistics and concepts like correlation break down in the face of infinite payoffs (like patients getting to go to a grandchilds wedding) and infinite penalties (like the death of a child). How does one account for a situation in which 10,000 good decisions are for nothing in the face of one mistake?
The right way for a patient to think?
I don't think they teach that in medical school.
Isn't an oncologist always medical ... ?
No - as they explained, medical oncologists treat with drugs. Surgical oncologists operate on cancer patients, and radiation oncologists treat with radiation. https://www.cancer.net/navigating-cancer-care/cancer-basics/...
No. Everything about that article is infuriating. We are fighting an enemy. Again and again we lose. The patient loses, the care team loses, the doctors lose, the family loses, the whole of humanity loses.
You have to believe you can win to continue to fight and you do have to fight quite literally with family, with friends, with yourself. But more generally we as a society have to be able to recognize an enemy and a battle when we see one. To remove, hide, obscure, or soften this language would be an insult to all those who have fought and lost in any capacity against this monster.
We fight, we lose, we die, repeat ... until we don't.
I think, holistically, you are correct. Technology and science should advance. Individually, though, the fight can quite literally be all but over. This is not pessimistic or fatalistic, but very real.
Rage, rage against the dying of the light. We as individuals get to choose what that means, though :)
Even in death, a patient that exhausts every option can provide medical data for future treatments. Their struggle is not futile just because they died.
And I don't believe we can ever be sure that the odds of death are 100%. Where there's life, there's always hope.
I'm not sure winning/losing and 'enemy' are the right terms to use. I fully agree that all resources should be mobilized towards making terminal illnesses like cancer a thing of the past, but a term like 'enemy' can give a misleading impression of what cancer is. It is not the presence of a consciously malevant force. It is the inability of the body to maintain proper function amidst the chaos of change. Having the correct conceptual framework is important for solving the problem.
Fighting implies you died because you didn't fight hard enough.
No, it doesn't. There are fights (both literal and metaphorical, hence this is not a problem with the metaphor) you cannot win no matter how hard you fight because you are outmatched by too much for more effort to overcome.
Indeed. I wrote an elaborate reply before seeing your comment. I think you made a good job of summarizing by beef with that article.
On the same note, highly recommend "Being Mortal", which talks a lot about that mindset and palliative care. It can be really damaging to think in terms of winners and losers since you might end up going through a lot more pain than necessary. It can be really beneficial for everyone involved to readjust goals and make the best out of the situation. Dying is part of life, and we need to be better at accepting and dealing with it.
Life is a celebration. Every day a gift.
I have a chronic life threatening disease. Side effects from a bone marrow transplant when I was kid.
I recognize the stages of bereavement in others (patients, caregivers, family, friends). The only difference between me and them is I had decades to process my mortality, to learn how to cope. Sort of.
Surviving is a strange gift. Live long enough and you'll see that you're not special, you weren't unlucky. It just happens. None of us get out alive.
The trick is figuring out how to press on, despite the foreknowledge, the futility.
Maybe I'm finally becoming buddhist in my old age.
Since you mentioned Buddhism you probably know what it's about, but for the benefit of someone that might be curious,
The Buddhist perspective is that none of this is actually real. It's all an elaborate illusion. The battle is an illusion, the cancer is an illusion, and death itself is an illusion.
Like the film Matrix, we live in a virtual world. Everything we see is a creation of our mind. All our perspectives, experiences, everything we feel, our cravings and impulses, none of this is actually real.
Our mind has both the power to create anything but also the power to understand how fragile and empty those creations are. Everyone has the Buddha nature.
Anyway what Buddha discovered is that we suffer because we are attached to the creations of our mind (such as the idea of being alive and the fear of dying). And he proposed a fix that is very simple, just see reality as it is: empty. Devoid of substance. That's it. This insight is elaborated in four points and is called the four noble truths.
Now, Buddhism isn't an intellectual exercise. Just having a cognitive understanding of the Buddhist philosophy is too limited and isn't how you practice Buddhism. Just believing in Buddha or any teaching is useless.
You practice Buddhism by having the right motivation (which is to bring benefits to all beings - since they, too, deserve to be free from suffering), having the right vision and acting the right way. This can be elaborated in eight points and comprise the noble eightfold path if you want to look up.
To follow this path, you need to convince your unconscious mind of those goals: too often we know what's the right thing to do but fail to act on it. And it's much easier to understand Buddha's insight than to fully incorporate it into your unconscious mind.
We do this by training the mind through meditation. Meditating helps you to release yourself from the slavery of always having to follow your own desires and impulses, but also enables the deepest parts of your mind to perceive reality as it really is. It's Buddha's mind hack.
It's never too late to practice a little bit of meditation. Just search for some guided meditation video on YouTube and follow it (5 mins is enough). You don't really need to believe anything nor abandon your religion and it may benefit you and, due to the way it changes you, benefit those around you.
Oh boy. Here's more "feel good" language change suggestions.
No. Just not. This kind of thing is extremely hypocritical and insulting to all those who are actually fighting cancer. Both the patients, the doctors and research teams.
>Cure seems like a goal that isn't realistic anymore.
Where did you get that from? Both cure and 5 year survival rates are higher than ever and are slowly encroaching advanced stages of cancer.
>And we need to make sure he doesn't think he lost anything. Its not fair and its incorrect.
Except it is. He lost his life. This is a fact. Language won't change it. Pretending that he didn't lose anything is more insulting to him and his family than not. Respecting his choice is different from pretending that he didn't lose everything.
I've seen people give up and accept their low chances of survival. It's very rare. More often than not I see people who want to live and exhaust every option available until the last minute of their lives. This is literally a fight and these people would punch you in the face if your righteousness suggested otherwise in front of them. And it blows my mind that a doctor( are you an actual doctor? In the States the term doctor isn't regulated so a chiro can call themselves doctor) doesn't see that the field is rapidly improving with better and more options all the time. Now more than ever before it's worth fighting to your last minute in case new therapies arrive that have great results for you.
> I've seen people give up and accept their low chances of survival. It's very rare.
This strikes me as being normatively loaded in a way that's unhelpful, at a minimum. There's a cost-benefit analysis that has to take place by patients and their families and there's a choice to be made between optimizing for length of life and quality of life.
I don't have any issue with the "fight" language, but the associations I make are to the body's fight with the disease, not the patient's actions.
In general though, all this talk of "fight", "battle", "never giving up", etc, strikes me as being somewhat American (in a pejorative sense of the term) -— it bespeaks an immature relationship with death.
>This strikes me as being normatively loaded in a way that's unhelpful, at a minimum. There's a cost-benefit analysis that has to take place by patients and their families and there's a choice to be made between optimizing for length of life and quality of life.
That's what a person who isn't in that position would think. In reality most people just want to live. So it's as much of a fight as a non-combat situation can be. And there is literally a battle between the cancer and your body going on.
>In general though, all this talk of "fight", "battle", "never giving up", etc, strikes me as being somewhat American (in a pejorative sense of the term) -— it bespeaks an immature relationship with death.
And I'm not even american. I don't think there's anything wrong with people wanting to live and get rid of a fairly "unfair" disease. Because cancer can indeed be unfair in many cases. An e.g. smoker knows it's probably coming. But the very nature of cancer as a probabilistic disease means some people get the sort end of the stick without bringing it on themselves.
> That's what a person who isn't in that position would think. In reality most people just want to live.
That's an exceptionally and offensively clueless thing to say. I speak from hard experience.
Death is a very personal thing. Would you tell the author of TFA that they are "giving up?"
>Death is a very personal thing. Would you tell the author of TFA that they are "giving up?"
Tell it to them? No. When the treatment effort starts, you make it clear that they can drop off the therapy at any time they want. When and if that happens you sugar coat it as much as you can and help them make peace with the world and their families etc. At that point no benefit will come to the patient from telling them the truth.
But it totally matters when discussing e.g. health policies or future directions of treatments. These people do actually give up and we should face that. We should ask what parts of our current treatment methods are the most unbearable and how we can improve those in the future. How to better approach the patients from the beginning. Things like that.
> ...some foe personified.
> ...make sure he doesn't think he lost anything
While I have vast respect for those that can have a different viewpoint, I'm not sure I'd be able to look on it as anything but an intensely personal attack from the universe that definitely takes things - notably, a future - away from me.
With time I might find the wisdom to feel otherwise. But time is what would be taken away.
Agreed. On the other hand, I'd like to think I'd not take it as a personal attack, but I'd not go as far to say I've not lost anything. Just because my life is insignificant in the grand scheme of things and we all have to die anyways doesn't mean I'm not actually losing time with my loved ones and the general enjoyment from life. I suppose you can 'change' the definition of losing or claim we don't own our lives anyways, but that seems like a stretch, and to some degree, seems like invalidating their sense of loss.
It's not personal, but it's no less an attack for that.
I hope death ultimately resolves to an engineering problem.
I hope for the same, but only after solving inequality and other "human condition" issues. I do not look forward to an Elysium-like dystopia with an immortal (ruling) overclass; undead corporations are already problematic enough.
I go to sleep hoping that humanity one day resolves death.
That is a goal I would be very happy devoting my entire life towards.
"Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war."
No it doesn't.
I imagine that the battle metaphor is comforting to some people for precisely the opposite reasons.
Being drafted into infantry (stereotypical mental image of a battle) there is likely no good outcome. The best case is probably a deeply unpleasant, emotionally and possibly physically painful, experience. The worst case outcome is death.
Ability to personally influence the outcome is limited at best. You can fight long, hard and smart and still find yourself on the losing side.
I have no direct experience of cancer but if I did, I'm not sure I would appreciate a critique of my choice of language.
If I found comfort in a metaphor then I'd hardly like for my doctor to point out that the metaphor is a cliche or a trope.
When her last chemo failed, my Mom lived for about two weeks, in excruciating agony despite intensive care.
Leukemia won, there was no other way to put it.
If you don't mind me asking, was there no medicine that could make it something more tolerable than excruciating?
There's a terrific book called "Tell them who I am." It was written, I think, in the last year of the life of a man dying of cancer. He wanted to spend his final days doing something meaningful.
It's about the lives and identities of homeless women at shelters where he volunteered.
I am sympathetic to your rage. I wish I knew how to help such people. But I don't.
Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life.
> Death comes for us all, sooner or later, one way or another. That's one of the few truisms in life.
I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis. Sure, dead comes sooner or later, and that's the whole point of why one would feel it sucks and that we're losing, because often cancer means for you, dead came way too early. I have not known anyone with cancer, but I can't help but feel somewhat related as I have a loved one with a mental condition. Although there are techniques such as 'radical acceptance', it's easier said than done, and when it comes from an external party advising you to accept it, it feels invalidating, because they don't know how it feels (even for others with cancer or mental conditions, each person experiences it differently).
>I'm genuinely making an effort to understand how this is relevant to someone with a cancer diagnosis.
Not having faced such yet, I can't say for sure. But I've noticed among a few friends I've lost to illnesses that some felt 'singled out' while others didn't. Passing seemed generally harder on the former.
Perhaps the 'it's gonna happen to us all' perspective mitigates feelings of being unfairly 'chosen' to some degree.
Yes, something like that.
I spent a year at death's door. When I stopped hallucinating conversations with the grim reaper, I knew I would live.
I've made my peace with my mortality.
And that's a private matter and we all get there -- or not -- in our own way. But total strangers who haven't made their peace with this will have big feels about our mortality in ways that can be problematic for the person who has accepted their death (in the face of a terrible illness).
Death is the ultimate joke. We spend so much time worrying about it. Avoiding it. Writing poetry and books about it. Maybe, If your a Religious being, even shaping our entire life around it because of the “ultimate judgement” in the end.
Death is a construction to make sense of our physical reality.
What could you possibly mean by that last sentence?
Another perspective is that we're like an ML model that takes tons of raw data and extract features from it, and infer stuff like "x is alive" and "y is dying". We insist that the features we extracted are the real thing, instead of a summarization that enables us to understand the world.
that the physical reality around you that you perceive through your mind might not be the end-all-be-all and death is just a small part of it all. I don’t know. You’ll find out sometime.
I don't know what he or she meant, but I wrote a comment elsewhere on the thread about a Buddhist perspective that touches on this. Ctrl+f Buddhism.
The tldr is that all our experiences are constructions of our mind. It's our mind that assigns meaning to stuff. Being alive or dead isn't a pre-existing concept, it's something we constructed.
An exercise is to imagine some beings very different from ourselves looking at Earth and not recognizing life. Perhaps because they exist in a different timescale, or they structure data differently. They wouldn't be able to see we dying.
Death is a construction to make sense of our physical reality.
That's certainly true from an evolutionary point of view.
It's relevant to anyone who's facing their own death, which is all of us. Knowing that everyone goes through the same thing is comforting.
Is not the same dying at 80 from 'natural causes' than at 35 due to cancer after a grueling experience fighting it. Which is why I don't see how I'd find that comforting if I were diagnosed cancer when still 'young'. That's just me though.
Fair point.
As long as we're mentioning books, check out "When Breath Becomes Air".
It had been a long time since I cried reading a book... until I read this one.
I don’t really get it. Of course he is losing something. His life. I lost my mum last year because of cancer. I don’t get why it’s a bad thing to fight for something you dearly love. Your life. What else you got?
I want to trust that Alex wrote this post because he has accepted what comes next. And he may still have a crack team of doctors vying for a cure, but either way... he has made his peace.
I want to trust that Alex posted this because he made peace and it's his final words. It is profound, it is beautiful, and it is how he wants it.
I cried.
I read this article a long time ago and it stuck with me.
https://www.theguardian.com/society/2014/apr/25/having-cance...
I feel weird about the status of cancer.. it seems there's so much progress that it hurts with a different taste nowadays.
That's your way of looking at it, other people have a different way. When you are on your death bed you can write about your own thoughts on the matter.
I read the explanation you linked. May be I'll be able to digest it better with some more thought, but my initial reaction is that they seem to be splitting hairs. Just like any metaphor, it doesn't fit perfectly, but the authors seem to be making quite a bit of leaps of reasoning to try to make it a bad/harmful metaphor, such as:
> Using the battle metaphor implies that if a patient fights hard enough, smart enough, and/or long enough, he or she will be able to win the war.
I don't think that ever crossed my mind. At least in my case I always saw that metaphor as implying you and your body are fighting, and your actions do have some degree of positive influence in helping your body fight and stay alive. A battle doesn't have to be a battle that is winnable with any degree of certainty, I can accept that is a battle with very low odds of winning and that the degree of control I have over how my body will react to treatment and if it'll be effective may be close to none. I can understand that, all they have to do is explain it. It doesn't mean the battle metaphor doesn't work. It doesn't mean if you lose the battle you're a 'loser' (the word loser IMO has a different connotation and doesn't apply to just anyone that loses a fight or that chooses not to fight).
> Patients with “curable” disease are cured because treatment eradicates every last cell, not because the patient did or did not somehow fight valiantly.
I believe the point is that going through the treatment is what makes them fighters. Yes the treatment is what cured them, but that's just missing the point that going through a painful treatment is why people (or at least me) call them valiant fighters. That doesn't mean I think if you don't fight or give up at some point you're somehow a coward. I could just extend the metaphor and say instead they chose to fight another different battle, facing mortality. Who's to say what's harder? I wouldn't dare to pass judgement on either choice.
> However, thinking about it from a different perspective, the use of the battle metaphor implies a level of control that patients simply do not have.
Are they saying they don't have any control? they can choose not to do any treatment. Choosing a treatment is staying in the fight. If they're implying treatments simply don't work, ok. But if there's even a small chance they do work, it's still a battle. It's easy for the doctors not facing death to tell someone to just give up, for some people hope alone keeps them mentally alive, not sure why is that hard to understand.
> When a person runs a marathon, we credit them for their training, commitment, and aspirations. We never declare anyone from the second-place to last-place finishers in a marathon to be losers.
If someone trains and doesn't finish a marathon or finishes last, technically they lost the race, yes, I'd not dare to call them or imply they're a loser. It's the same situation for someone that loses to cancer. The only reason I think losing to cancer is appropriate is because is final, you lost your life, which is not the case for a marathon, where you actually accomplished something that you can later be proud of and share with your family.
> As they turn from treatment to treatment, they are not spending time with loved ones; rather, they are chasing the illusive “win,” a path that affects not only them but also their family and caregivers, as well as family finances.
That's all good and fine, and it should be clearly spelled out and given as an option, it has nothing to do with whether the battle metaphor is accurate or good for some people or not.
> Did she lose her battle? Or did she choose to control how she spent her final days?
She chose not to keep fighting and that's fine, no need to pass judgement, it's a very hard fight after all, so even if we say she lost her battle to cancer, she chose to fight and win the battle of facing death in your terms and that also deserves my utmost respect. The authors instead choose to imply that saying someone lost a battle is calling them a loser.
> We firmly believe that health care professionals owe their patients the difficult and honest discussions that come as patients grapple with their mortality. We also believe that patients’ decisions should be honored and supported by their health care team.
That is one thing I agree with.
> Let us focus on the life that people enjoyed before being told “you have cancer” and remember them as victors in life, not losers in death. Let us stop letting cancer appear to be the winner.
It's fine to focus on the good stuff, doesn't magically mean you weren't dealt a sucky hand and that it's fine to grieve and feel the loss. Would you tell a father that lost his small son to cancer to move on and celebrate his life (as short as it was)? it's a loss, stop pretending is not, it's healthy to acknowledge the loss and grief before you can move on.
Immune receptors that bind healthy cells and tissue are said to be autoreactive, and the antigens on healthy cells and tissue that they recognize are called self-antigens.
From someone who's been dealing with cancer for the last 6 years, I hate when people compare it to a fight/war/battle with winners and losers. What exactly am I fighting? My cells? How exactly am I going to war? by sitting in a chair eating a sandwich while getting a chemo infusion?
In my mind, this was always just a disease to manage. Being diagnosed at 33 with no family history or no genetic markers the only thing I could point to was some random mutation that reprogrammed my cells. Modern medicine as this point is serving it's purpose -> buying me more time. I personally don't have any illusions of grandeur that I'll be "cured" but I'm thankful the extra time that I've been blessed with and just try to make the most of it everyday. That's all you can really do with or without cancer.
I think many don’t think of cancer cells as their cells. They’re not supporting life anymore so they don’t belong, and it’s important to get rid of them. Plus the immune system is often (not often enough) destroying the cancer(ous) cells which further indicates that they don’t belong. So it’s the rest of the cells vs the cancer cells.
It’s good that you’re trying to make the most of everyday. Best wishes.
What were your symptoms? How were you originally diagnosed?
This. What is the "correct" course of action to have it diagnosed early / maximize odds of survival?
The earlier the better. Depending on the cancer type early diagnosis of e.g. skin cancer has almost 100% survival( cure) rates. Early diagnosis of lung cancer gives the option of removing the whole section of the lung. Decreases the maximum oxygen supply rate but not enough to affect daily life.
Generally speaking if it's early we can cut it more easily, radiate the specific area instead of many different ones that cause more side effects and we can target it more effectively with drugs before it metastasizes and spirals into too many different types.
Some new immunotherapy and blocker options offer significantly increased survival rates for advanced stages of cancer as well. Nivolumab is an example that offers a 20-30% 5 year survival rate on advanced non small cell lung cancer. This isn't cure but it isn't a slow burn either. The cancer masses seem to just not grow- but not shrink either and the patients just keep chugging along. The interesting part is that the reason why the rate is 20-30% is because that's the percentage of people who respond to it. A combination of nivolumab and another drug that I forget it's name that failed as a solo option seems to increase it's rate to 40%. Keep in mind this is advanced lung cancer, the type that a couple decades ago had a couple months survival rates.
So are there some specific symptoms one should look out for? Some comprehensive periodic tests? Maybe combined with some genetic pre-screening?
Given how important it can be to diagnose these things early, I think most people have no idea how they could or should do it - apart from maybe breast and testicular cancer.
If you were to design a policy for someone that wanted to maximize their survival probability with regards to potential cancers while still leading a normal life, and money was no object, what would that policy look like?
>So are there some specific symptoms one should look out for?
Not something overly specific. And it also depends on cancer type. Lung cancer is mostly without any symptoms until it's very advanced and you start coughing blood.
>If you were to design a policy for someone that wanted to maximize their survival probability with regards to potential cancers while still leading a normal life, and money was no object, what would that policy look like?
I would say the best bang for your buck would be an annual MRI test. It won't show absolutely everything but it would show most stuff.
I was diagnosed with colorectal cancer. I found out when I saw blood in my stool. I went to the doc and the rest is history. When I was diagnosed it was already at stage 2. Honestly, unless you're getting CT scans twice a year, there's really no cheap and easy way to stay ahead of the game. My docs have had me get CT scans every 3-6 months and have caught subsequent metastases early by doing so. However, unless you are currently under treatment or at the age that requires a specific type of cancer screening, it'd be hard to get that approved by an insurance company. It's worth asking though.
Jeeeesus. I'm incapable of understanding the mindset the man is in - total awareness of impending death. It must take tremendous courage - I think I would have been reduced to a quaking pile of jelly faced with the fact of mortality. What a person, what a reality.
My mom once told me that the only thing she knew of that was worse than having cancer, was being the long-term caregiver for someone who had cancer. She was taking care of her sister at the time, who had stomach cancer.
Then my mom passed away a few years later, due to lung cancer -- caused in part by her sister who was allowed to smoke like a chimney, even in the hospital, because she was at stage 4. My dad was the primary care giver for my mom.
My dad recently passed away in ICU, when I had to make the hard choice to remove the ventilator instead of doing a tracheotomy, because everyone in the family knew that the last thing he wanted in life was to die in a nursing home. And if we had them do a tracheotomy, he would never be able to go home again. He never woke up, and passed within an hour of removing the ventilator. He was 74.
I've had thyroid cancer, which was surgically removed and then I had radioactive iodine therapy afterward. I'll be on synthetic thyroid replacement medication for the rest of my life.
I don't think I have much illusion about what is around the corner for me. I'm just trying to put it off for as long as I can, try to get some good work done in the time I have left, and enjoy spending as much time as I can with my wife and what is left of the family.
You deserve better than what you've gotten.
<3
I mean, your death is impending too.
Beyond my comprehension. I give a try about once or twice a year, fail, and don't think about it.
> I'm incapable of understanding the mindset the man is in - total awareness of impending death.
Seriously? Every human being on Earth over a toddler's age is totally aware of impending death. To date nobody has ever lived forever. The only question, for every human being, cancer or no, is how many years you get before you eventually die.
Modern man just makes my head shake in disbelief sometimes...
Not sure your post deserves to be taken seriously as it seems sarcastic/arrogant and incredibly pedantic, but I will assume that's my own emotional response and try to distance myself from that knee-jerk reaction.
IMHO, most people live on autopilot with some sense of ignoring the reality of death. I think this decision we often tend to label as "feeling we are invincible". There's some underlying feeling that death is so far off that it almost doesn't seem real to us. Yes, intellectually, in a cold, logical sense the fact that we die is known to the majority of humanity. But I think that is irrelevant to the post to which you replied.
By total awareness of impending death, I believe the parent post was clearly implying that the author has had the gravity of the reality of death thrust upon them and made real to them in a way that few of us experience or choose to dwell on.
Once you are aware your time alive has been essentially quantified- in much more stark terms than "eventually", especially when the time remaining is rather short- I believe this is likely a unique psychological/emotional experience, one that is difficult to understand without ones self being put in that position.
What feelings would you expect, or prefer, me to feel in reaction to your comment?
That's a great reply, I think the internet would be a better place if people (myself included) asked themselves this very question before posting a comment online.
Robot says feelings are for fleshy humans
> To date nobody has ever lived forever.
Wrong.
https://en.wikipedia.org/wiki/Mahavatar_Babaji
There is something you can do to help people with leukemia: register as a stem cell donor. Germany has a very strong system with 71.000 stem cell or bone marrow donations per year while there are only 11.000 cases of leukemia in Germany - most go to the rest of the world. There are 5.7 million registered donors[1] (total population is around 80 million).
[1] https://de.wikipedia.org/wiki/DKMS
Though I have not personally donated, I have been swabbed in the US via the BeTheMatch organization [0] and I know people who have donated. The swabbing process is very easy and free. However, donation is not as easy as with blood. The process covers a few weeks, typically a flight and overnight stay before donation, and then the process itself which can be difficult at times. One key thing that I discovered is that you do not ever meet your match and there are strict rules against this (due to prior events with racism, sexism, religious issues, etc).
Bone marrow donation is not an easy thing. However, it is a heroic thing. You are very personally and quite literally, saving someone's life that you will likely never meet (what a world we live in!). With blood donation, it's a bit less connected, at least here in the US. They tell you that you are saving up to 3 people's lives. But outside of the donation station, you never really think about it again or hear from anyone about it. With marrow donation, you, and only you, are the reason that another real person is alive [1]. It's much more, well, intimate(?) than with blood donation.
Also, as HN tends to be a bit more on the paranoid side, I checked and they do NOT store any genetic information about you. Only the lymphocyte tests are stored via HIPAA compliance and are deleted when you decide to go off the registry. It seems that they are not very shady, so to speak, and really are trying to save lives and nothing else.
Please, if you are able, consider becoming a donor today.
Be an honest-to-God, real, actual Hero today.
[0] https://bethematch.org/
[1] Not to discount all the staff, nurses, doctors, researchers, financial donors, etc.
This. Registering is very easy, at least in Germany. I did it because I stumbled upon an event that did a mass registration, but you can also request a kit that contains everything you need to register. Just send the cotton swab (?) back, it's easy and no pain involved. Please look up whether there's an organization near you that offers services like this.
I registered online with DKMS. They send you the kit, you send back the swab in the pre-stamped envelope, it's really that simple.
I found this website that lists the equivalent organisations around the world - or at least, it lists DKMS for Germany, and the one I know to be correct for the Netherlands: https://swabtheworld.com/become-a-donor/
For one reason or another they don't link directly to those organisations, but if you have the name, you should be able to find out the rest.
Good shout! I've done it a few weeks ago and its quite straightforward process.
Can confirm, painless and without any side effects
Godspeed. Thank you for sharing your stories.
For anyone reading here, one way to donate in general is The Leukemia & Lymphoma Society: https://www.lls.org/
LLS funds blood cancer research, education and patient services. You may know of LLS because of its annual fundraiser event known as “Light the Night” and its fitness initiatives “Team in Training“.
I'd like to add one other important (free!) way you can help: Sign up to be a marrow donor.
In the US, here: https://bethematch.org
Alex mentioned graft-vs-host disease. When you get a marrow transplant, the better the match, the more likely you are to survive. The bigger the database, the better chance of a good match.
Seven years ago I lost a good friend to non-hodgkin's lymphoma. Cancer sucks.
Signed up over a decade ago with Australian Red Cross blood service. Haven't heard anything but it's good knowing that if the call ever comes, I personally might save someone's life. (Donating O- helps in a more general way.)
Haven't heard anything? You should be getting regular pings as they make sure they can reach you annually or more frequently.
I'm an active blood donor so they do know how to reach me.
For non-US donors, check out WMDA[1] for information on joining a marrow donor list. Many countries have some sort of donor-sharing agreements. I know someone in California who received a donation from someone in Germany.
[1] https://www.wmda.info/donor/become-a-donor/
LLS is an amazing resource.
It is a great source of useful information for patients and families. Anyone going through a similar process knows the horrors of googling for information. You end up with all sorts of pseudo-science (e.g. "paleo cured my cancer"), false hopes (e.g. mouse trials which sort of address particular variants of mildly related diseases), and sensationalist terrifying stories of the horrors of chemo.
It is also a great resource for finding support networks, both in-person and over the internet. (Seeing a therapist or joining a support group is so important for both patients _and_ those close to the patients!)
It's 2:40 AM, I open Hacker News because I couldn't sleep and notice this is on top of the page. I have no words.
I didn't really know Alex from his work at Automattic, I knew him as the guy who ran the fan website for "Top Gear". I don't have any numbers how many people he helped to get access to the episodes, but I'm absolutely certain the show would have never gotten as popular without his contribution.
Thanks and sorry.
I hadn't looked at Final Gear in years but that really brings back memories. I didn't know who ran it until now. When TG was on the air I would refresh FG until the episode was released.
I'm glad I got to know about one of the people who contributed to making my life a little better, even if it was close to the end of his. Thanks Alex for all of your contributions.
My dad had one month and one day from diagnosis ("surprise, you have stage 4 lung cancer") to death.
Fuck cancer.
Thank you, Alex, for trying to make the world a better place. Open source is a wonderful legacy.
That's awful. My condolences :(
There's a weird way to look at it...
If he was going to die, he wouldn't have wanted to linger, or suffer, or be a "burden."
Also, he should have died 12 years ago from alcohol and depression, but he found AA and it worked for him.
In those 12 years he got to see me married, and got to enjoy 5 years with my daughter.
Yes I'm incredibly sad that he's gone, but I'm so thankful he got those 12 years... and that he didn't kill anyone in a DUI.
Thank you, AA.
Incredible sad read and I wish you the best of luck if any journey is ahead of you. We will all come pretty soon after you! Wordpress is an awesome tool and project. I don't know you or your work but I'm sure it's just awesome. Thanks for improving the open source world for us with your skills!
Whenever faced with death in my life, I have always found comfort in Richard Dawkins wonderful speech.
I hope you'll do the same.
https://www.youtube.com/watch?v=IOXMjCnKwb4
This man is living my worst fear. Also 34, watching my 6 year-old play a video game.
Good luck, Alex. All I can say is, I don't know how you stand, but I know a man who can.
Children and death, be it yours or theirs, is the worst combination of thoughts possible to occupy your mind.
Mortality is one of those things that I grow more accustomed to the older I get. I hate it. There’s not a day that goes by that I don’t think about death or things that cause death. Death is everywhere — the news, social media — two things I try to avoid. However, we cannot avoid death. We are all just living to die.
> We are all just living to die.
Pretty sure there's more to it than that, bud. But you know that already of course. Death is a great motivator to live a life with purpose and meaning, for one. Dwelling on mortality can bring a sharp focus to your life. It's a fear that transcends all other fears which may stand in your way.
That's the downturn of Western philosophy that we are raised on. We perceive death as an opposite to life while naturally they are the parts of the same cycle.
Timely, re plugins:
https://news.ycombinator.com/item?id=19199647
https://www.codeshelter.co/
> Code Shelter is a collective of volunteer software developers that aims to help with maintaining popular open source projects whose authors need a hand or don't have the time to maintain them any more.
So sad. But good to see you’ll be home and comfortable with your loved ones than at a bland hospital room. Godspeed.
Wow. I read all of his posts marked cancer, and looked at the date stamps...and just kind of lost it at "34".
Fuck cancer.
Reading through some of the past posts, he seems to have quite a stoic view of his situation (saying he's 'along for the ride'). Indeed, there's nothing he can do about it, it makes no sense to stress about it. I hope I'm able to feel similarly when it comes time for me.
So sad. Reminds of some promising research into fasting that applies specifically to his form of leukemia, ALL. https://www.utsouthwestern.edu/newsroom/articles/year-2016/l... I'm sure he's had a ton of people suggesting all kinds of things, but I wonder if he has looked into fasting. There's not much downside to trying at this point.
“Strikingly, we found that in models of ALL, a regimen consisting of six cycles of one day of fasting followed by one day of feeding completely inhibited cancer development,” he said. At the end of seven weeks, the fasted mice had virtually no detectible cancerous cells compared to an average of nearly 68 percent of cells found to be cancerous in the test areas of the non-fasted mice."
Damn. I’ve been following Alex as a peer in the early WP scene since back in the day. Didn’t realize this was him until I saw his about page mention Viper007Bond.
If you’re reading this bud I hope you know your work has made a lasting impression on many.
Cancer is life, not death on the micro level. Okay, maybe a shortsighted and cellfish (my play of words) struggle for life, but aren't we as a civilization doing the same thing right now? Anyway, if we keep vilifying cancer without understanding it, we'll end up "losing". I'm saddened to hear that a good developer and an open-source contributor has been struck with this fate. As a civilization with bold claims to fame, we should really focus on these mass killers rather than building bigger bombs and walls. I mean, come on, we can't even treat the flu and thousands die every year!
Immensely saddening. I just read through some of his cancer tagged posts on his blog and it seemed like he was finally reclaiming his life back. So sad to read that it came back.
Hope that you find peace, my friend.
It's too early to bury Alex. Donor immune system may still rise up and kill leukemia cells while leaving some liver tissue for it to regenerate. Not so much of a chance but still...
Highly recommend Tolstoy's Death of Ivan Ilyich. One alternative sequence is you can start at part II, read to the end, then read part I. Edit: My guess is part I is there to show the reader what his/her own reaction to death is, before he begins his lesson. http://www.lonestar.edu/departments/english/Tolstoy_Ivan.pdf
Very sad to hear. You are a strong fellow for putting things out there in such a public way, I am sure you have helped many deal with their own struggles.
Thanks Alex for living a good life, and sharing your work. Thank you also for the reminder to live every day like it is your last.
https://www.facebook.com/groups/416702921703509/
Cannabis oil may help you. This group has loads of info. Just search / post for leukemia. Lots to read.
to friends and family of loved ones in similar situations -- dont hesitate to say anything you need to say to them. dont live with regrets. and to friends and family of their caregivers, dont underestimate how hard this is for them too. they will need your care just as much.
Thanks for the top notch torrents and the plugins that make my life easier. I've never known who you were, Alex, but it turns out you've been a part of my life for years.
working on a project in this space now. Definitely hits home - trying to solve problems in this space is important when you read things like this. At times it can be a very demotivating space to tackle because trying to do anything new in this domain is a real slog and for good reason. There are some smart founders and VCs out there, it would be great if more of them decided to spend their time working on more healthcare issues.
Reading posts like this one makes you feel bad about your tiny little problems and how grateful you are with your life in front of death.
Could one not irradiate the whole body and replace the destroyed marrow with some from a compatible donor in order to fight this?
All I can say is that the disease hasn't won. It may have gone beyond the treatment window, but it has not won.
Godspeed, Alex.
This put a lot in perspective when my grandmother passed from breast cancer: https://xkcd.com/931/
Sorry to hear this, I never know what to say in these situations but I wish you and your family the best.
I paused and thought about what it must have been like to write that post.
I hope if I'm ever in their shoes I'm as dignified and grateful.
Dying is very real and very scary notion.
Very sad
Damn
this is so sad
Is there a chance of a liver transplant?
Unlikely, as his cancer diagnosis puts him below other patients with an higher chance of survival, and the chemo will likely be too much for a patient recovering from a transplant.
Lab-grown organs can't come soon enough :(
I'm not an expert here, but I doubt that he would qualify for a transplant given the heavy toll that the future leukemia treatment would put on the transplanted liver. It's sad, but sometimes there really aren't any more options.
The fact that he mentions GvHD would indicate that not to be an option, unfortunately. IANAD.
100% not the same as Alex's sad situation, but for kidneys a dual stem-cell-transplant and kidney-transplant has been done[1]. It was NOT done due to cancer (but due to kidney scarcity) and was NOT done for the liver. I don't think it could ever even be done for the liver because stem-cell-transplant cannot (to the best of my knowledge) be done from a cadaver-donor. Maybe some medical center would be willing to try a living-donor for SCT and partial-liver...but I'm not sure it would get past the ethics committee.
[1] https://clinicaltrials.gov/ct2/show/NCT00319657
Warning! This is not a replacement for medical advice and I could be wrong. This is not my speciality!
If I'm understanding correctly seems like Mr. Mills had a marrow transplant, and the white cells in the marrow from the donor had attacked his liver. Chemoterapy is a poison, and liver's work is to deal and be distroyed by poisons, so this does not help.
Without donor's white cells, the Leukemia gets worse, but without liver, people die fast. It seems that restoring liver function would be the higher priority now.
Liver has evolved to be destroyed and regenerated. Is able to create new hepatocites massively if needed. Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks. Is an awesome organ if we think about it.
The options are, I suppose, a liver transplant/liver graft, that is expensive procedure but very effective.
or a liver support device that could buy a precious time until a liver donor is available
It seems that in USA there are around 4000 liver available from donors each year, and a list of around 17000 receptors. Liver transplant is expensive. You need to invest maybe $12000-250000 only for the operating teather part. Plus post-operatory procedures.
An alternative could be to take a chunk of liver of Mr. Mills and cultivate it in a laboratory, far from chemoterapy and vicious white cells and then create a bio-system that could act as an artificial liver for some time. A possibility maybe could be to make a self-transplant in the future. Even small chunks can regenerate a much bigger chunk of liver
Several types of artificial livers could help also to alleviate the liver work, like a Molecular Adsorbents Recirculation System (MARS) or/and fractionated plasma separation and adsorption (FPSA, Prometheus)
This is a question coming from complete layman. In fact, I'm ashamed to ask such a stupid question. But I'm still curious:
> Is said that you can remove 2/3 of the liver and the remain cells will regenerate a complete liver in only 2 weeks.
Does this mean it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)? Then why don't everyone donate their liver like this? Why are there only 4000 livers in the US?
You can donate part of the liver, but it isn't "like nothing ever happened". This followup[1] of donors from 2011 found that 53% suffered long-term complications (though 93% would have gone through with it again). Notably missing from those stats is the percentage of donors who died after donation, either due to direct effects, indirect effects, or totally unrelated things.
Donating one of your two kidneys is maybe a "like nothing happened" experience, but donating a partial liver is much more complicated with worse outcomes.
[1] https://journals.lww.com/annalsofsurgery/Abstract/2011/11000...
> Donating one of your two kidneys is maybe a "like nothing happened" experience
https://news.ycombinator.com/item?id=12629724 <-- Here's an HN post I remember about donating kidneys
> it's possible for one to donate liver (say, half a liver) and live like nothing happened (except a scar)
There is a risk to manage, but is possible, yes. (Liver regenerates itself, so maybe even without leaving a scar. I'm unsure about that).
> Why only 4000 livers...
Probably a bottleneck and main factor is the money and finding somebody with experience that would want to do it. Is not a trivial procedure and there is also a risk for surgeons to be sued if things go down.
The technique is relatively new, starting at 1989 with Alyssa Riggan, a toddler girl 21 months old from Texas that is still alive and living a normal life currently. The donor was her 29yo mum. The technique has being adopted regularly since 2014 (if I'm not wrong). More than 4000 patients had received such treatment in USA since them. Ms. Riggan has a normal life now and does not even need her anti-rejection medecines anymore. The survival rate in adult patients at 3 years is > 95%, and 100% in children patients.
For the donor, will feel some pain (that can be alleviated with medication) and will feel very tired for the first month. Around half liver of the donor is taken. Most regeneration will happen in the first 2 weeks.
https://www.webmd.com/hepatitis/features/living-donor-liver-...
After Mayo Clinic [1] two months are enough to recuperate the liver in the donor. Other hospitals talk about one month.
[1] I can't find an english page to cite, is automatically translated to spanish in my case, but shouldn't be a problem for most adults: https://www.mayoclinic.org/es-es/departments-centers/transpl...
Having cancer, Mr. Mills would be elected [2] to receive the liver of a dead people instead a live donor, unless a relative or a friend would agree to donate him part of their liver.
[2] I'm not expert in your health system, Just guessing that he has a low score in the list.
http://columbiasurgery.org/liver/living-donor-liver-transpla...
Hope a miracle happens to you, Alex
Miracles do not happen. What he needs is a donor and a crowdfunding campaign.
Miracles are just statically unlikely occurrences according to the viewer.
By stating they don't happen, you are alluding to an absolute truth, which can not be proven.
I have a different definition of miracle than yours.
Cannabis OIL can Murder Lukemia - what are you waiting for? Come to Colorado NOW! Save yourself.
It will be interesting to see if this guy gets a black bar on HN. Seems to be reserved only for old-and-dead.
Clickbait title.
You're gonna call clickbait on an ad-free personal blog from a guy announcing that he's dying? Seriously?
Come on!
There's a cure for everything, including eventually old age; whether you find it or not is another story.
There's no cure for death after the fact. No cure for the loss of information from a damaged brain, unless somehow a backup was made.
Well the body will eventually "loose the battle" for us all. But Consciousness... since quantum information isn't lost, consciousness might be another story and not get lost with the body.
Well, I'm sure that will help the guy with cancer. C'mon.
>But Consciousness... since quantum information isn't lost
Is this one of those instances where the word 'quantum' is used to hand-wave away weird ideas?
It seems fasting can potentially help starving cancer. https://gero.usc.edu/cll/ It can help liver problems too, so maybe worth a shot as a last-resort attempt to stay alive.
For fucks sake man. You and the others leaving comments on his site about green tea, olive oil, diets, fasting, "ayurveda", and god(s) that will save us if we really believe... wtf.
This is a guy that has a death sentence over his head. He's being doing treatment for years, his body is weak, probably has or will have pain regularly. Is this the moment to do fasting or drink freaking green tea?
It's cancer guys, not a simple cold.
The link goes to a medical research project that suggests existing drugs are more effective when combined with a few days of partial fasting. It needs more research, but I don't think it's fair to lump it in with fad diets and green tea.
Whenever I’m studying a given topic, I like to buy maybe 6 or 7 books on it to skim-read from someplace where that’s afforable like HPB or Thriftbooks. Gives you a good overview of field and also each of the books fills in the holes of the other books.
Recently did this on the topic of “cancer”. All recent books published in the last 15 years by Big 5 Publishers.
Every single book had intense criticism for the NIH. It seems they do a lot of good, but their singular focus on only funding “hypothesis based research” has driven and then kept extremely promising ideas on the sidelines for 25 years.
Very sad to read at times, and made me really appreciate how scientific progress comes in amazing bursts that are short lived but that everyone depends on for decades to come.
EDIT: Kind of astonished by the downvotes. This book goes into more detail: https://www.amazon.com/dp/0374135606/
Also something else I forgot to add is how the death rate from cancer really hasn’t budged in 20 years by being generously massaged via something known as “average death rate”. Adjustments are made to have the US population conform to a model, against which the amount of deaths per year are calculated. While intended to smooth variance YoY, this model helps to a great extent the system currently operating.
What is the alternative? Wild guess based research? Faith based research? I'm having a hard time envisioning how you'd design an experiment, and extract knowledge, without a hypothesis.
"Hypothesis-driven research is based on scientific theories, while exploration is based on a search for discovery backed by few theories or none at all."
"With hypothesis testing, researchers present what the study hopes to accomplish, how it will be done and possible outcomes. [..] Meanwhile, exploratory research examines unknown areas with no or little-known theories to back them -- perceived as a riskier bet."
- https://www.sciencedaily.com/releases/2013/09/130927105138.h...
> I'm having a hard time envisioning how you'd design an experiment, and extract knowledge, without a hypothesis
"Often, a proposal to gain observational experience is dismissed as being a "fishing expedition"…but how can one devise a workable hypothesis to test without first acquiring basic knowledge of the system, and how better to obtain such basic knowledge than to observe the system without any preconceived notions?" - https://www.edge.org/response-detail/11702
>their singular focus on only funding “hypothesis based research”
What is the alternative to "hypothesis-based research?"
OP probably means exploratory science, in the sense of not starting with a claim to confirm (or deny) but with procedures to discover features of a system (e.g. about human red cells) that hypothesis may not be targeting.
https://www.sciencedaily.com/releases/2013/09/130927105138.h...
https://en.wikipedia.org/wiki/Blue_skies_research
You would be surprised how much real-world utility comes from poking around things with no clear up-front goal.