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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

• ergothus 8y ago
  > ...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.
  • moises_silva 8y ago
    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.
  • deleted 8y ago
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  • ridgeguy 8y ago
    It's not personal, but it's no less an attack for that. I hope death ultimately resolves to an engineering problem.
    • xvector 8y ago
      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.
    • sangnoir 8y ago
      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.
• cafebabbe 8y ago
  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.
  • stef25 8y ago
    If you don't mind me asking, was there no medicine that could make it something more tolerable than excruciating?
• agumonkey 8y ago
  I feel weird about the status of cancer.. it seems there's so much progress that it hurts with a different taste nowadays.
• iooi 8y ago
  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.
  • specialist 8y ago
    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.
    • babyloneleven 8y ago
      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.
• bradknowles 8y ago
  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.
  • Namari 8y ago
    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.
• DoreenMichele 8y ago
  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.
  • moises_silva 8y ago
    > 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).
    • deleted 8y ago
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    • ridgeguy 8y ago
      >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.
      • DoreenMichele 8y ago
        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).
• iandanforth 8y ago
  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.
  • bitexploder 8y ago
    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 :)
    • CryptoPunk 8y ago
      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.
  • selectodude 8y ago
    Fighting implies you died because you didn't fight hard enough.
    • dragonwriter 8y ago
      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.
• caymanjim 8y ago
  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.
  • schoen 8y ago
    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.
    • waynecochran 8y ago
      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.
      • ljm 8y ago
        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.
• jostmey 8y ago
  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.
• ljm 8y ago
  I read this article a long time ago and it stuck with me. https://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle https://www.theguardian.com/society/2014/apr/25/having-cance...
• ljm 8y ago
  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.
• moises_silva 8y ago
  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.
• LordHumungous 8y ago
  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.
• NeedMoreTea 8y ago
  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.
  • quadrant6 8y ago
    This 100%
  • jumbopapa 8y ago
    We're to the point that we have to be more PC about the way we're describing cancer...
• Gatsky 8y ago
  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.
  • hycaria 8y ago
    Isn't an oncologist always medical ... ?
• james_in_the_uk 8y ago
  "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.
• baxtr 8y ago
  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?
• HeadsUpHigh 8y ago
  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.
  • jmromer 8y ago
    > 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.
    • HeadsUpHigh 8y ago
      >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.
• deleted 8y ago
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