13 ms·
On being ready to die, and yet also now being able to swallow ice cream
- sgseliger23 3y agoThank you for continuing to update on Jake’s story.
- Multiplayer 3y agoThis is gut-wrenching to read and my heart truly goes out to Jake and his family. My mother-in-law had this diagnosis and same course of treatments although she was able to keep half her tongue before the cancer eventually returned with a vengeance. Only now reading these visceral, gripping diaries do I realize how poorly I understood her physical and emotional experience. I am very, very hopeful that the coming generations of AI enhanced research will accelerate us quickly out of these almost unbelievably brutal treatments and into therapies that work non-destructively.
- jseliger 3y agoIt's very hard, and, yes, the treatments we're collectively using are still primitive. FWIW it looks like I'm in a relatively promising clinical trial, and the primary treatment is likely to be less hard than surgery, radiation, and chemotherapy, but recurrent / metastatic head and neck squamous cell carcinoma (RN HNSCC) kills. It's conceivable but unlikely I'll somehow survive, but my understanding is that most people in the field think that it'll take some combination of treatments to make any substantial progress.
- notsosmart 3y agoWow, a heart breaking read for sure. There is a gofundme for Jake here -https://www.gofundme.com/f/help-the-fight-against-cancer-with-jake-s https://www.gofundme.com/f/help-the-fight-against-cancer-wit...
- monero-xmr 3y agoMy aunt - one of 9 kids, and the only one who assiduously avoided alcohol and tobacco - died at 60 from cancer on her tongue. It took about 6 months from diagnosis to death. You never know when your life will change. Death is possible anytime, but also an accident, injury, death of a loved one, it can be anything. I had an early-to-mid-life crisis in my early 30s where my own mortality became much more real to me and it altered my thinking and behavior. I honestly can’t say if a quick, sudden, unexpected death is preferable to a long, drawn out, terminal death that gives a long time for careful thinking and study. I think I would prefer the latter despite the indignities and pain that you succumb to, as the author clearly shows. The idea that you can be walking down the street and have a heart attack or aneurysm is deeply disturbing to me, although I know people who died this way and it is a fairly likely way to die. We should always, always, always be thankful for what we have. If you wake up and you can walk, if your children are healthy, if you have food to eat. So often today we let small grievances and petty issues ruin our happiness. In reality these problems are nothing compared to true suffering. A friend is a hospice worker for dying children, who helps assemble their memory books and plan their final events and wishes. She does this work week after week with multiple children at a time. Imagining the slow death of my own child, planning memories, explaining to them about heaven, it is an astronomical amount of suffering that I cannot force myself to follow a logical thought experiment to conclusion. I have followed along with this brave man’s story. It can happen to anyone, at any time. One idea that comforts me is that every single living creature that existed before me has died, and every creature that exists now will die, and everything in the future will die. You cannot have the gift of life without the curse of death. While we all die alone, we all experience death - it is only lonely in the actual experience but it is something that all of us will participate in.
- ed_mercer 3y agoThis was moving and eye-opening. Thank you.
- Moto7451 3y agoMy brother passed from Multiple Myeloma earlier this year. This was a rather rare instance of that disease as my brother was turning 30 in the year he contracted it. Usually you’re much older if you contract it and it may be found once something else is found. He did a better job of explaining how treatment went and how it went wrong here: https://www.reddit.com/r/multiplemyeloma/comments/109nxh3/getting_close_to_the_end_of_my_journey/ https://www.reddit.com/r/multiplemyeloma/comments/109nxh3/ge... What he would not be able to explain is how the palliative care went. I expect the author wont be able to unless he is lucky (or unlucky depending on your views on life and death) to last months/years. Unless you set aside a good bit of money/have a fairly good facility near you, you’re probably going to rely on friends and family for care. In the US your insurance should cover the palliative care facility and their efforts but getting a dedicated bed will cost extra. My brother worked for Apple and they did an outstanding job being supportive and had a lot of extra programs and perks to help cover many of the costs. I’m located on the East Coast but took two months off from work to help care for my brother. He ended up just needing three weeks. He wrote that post right in the in between of a decline that “gradually and then suddenly” would accurately describe. He went from being cleared to drive to unable to do so within two weeks His actual death was due to chronic kidney disease and the eventual renal failure/body tail spin. Eventually eating and drinking wasn’t a reasonable or interesting thing to do. You’re in a race to consume calories but unable to keep them in your body. Your next thought might be, “drink sugar water” but you’re also limited in how much water you can drink and managing sodium and potassium in your body. Also at this point there is no outsmarting your predicament. This is where your mind goes in alternating cycles. Eventually things go poorly enough that your blood oxygen level plummets and you lose consciousness. From that point what you experience is all a thought experiment for medical professionals and the people wondering if you’re feeling any more pain at this point. If you find yourself in this situation you need to find good advocates that will help you find some ability to become ready to die and eventually tell you that you’re done fighting and to enjoy the time you have. My brother got a day and a half of not having to think about potassium and sodium and dialysis before he became unresponsive and another few days before he passed. If I am in charge of advocacy again I’d try to extend that to at least the last week. In our case that wouldn’t have been too hard to do because they started warning us that his BP and pulse were marginal for dialysis and they were threatening to decline treatment in several sessions. Once you get to Palliative Care, and especially the point all treatment has been stopped, your advocates/family will be the ones giving you drugs to keep you comfortable. The palliative care providers train your advocates/caretakers on how to give morphine and other drugs. If you’ve picked people that are particularly well organized they'll take good care of you between the nurse visits. Keep emotionally unstable people away from the nurses. We almost lost my brother’s care because one of his friends stopped taking his medications and seeing his therapist the week he heard the bad news. This turned into a really bad situation where the nurses were just a moment from walking out the door. Palliative Care is not fun but I have a hard time imagining a more humane way to go aside from legal assisted suicide.
- patryn20 3y agoThanks for continuing to write as you can. Both of my parents are simultaneously dying from different forms of cancer. My father the same as yours (it started in his upper gum line). My mother a rare form of bile duct cancer. They’re not the sort to engage in psychedelics, but I suppose in some way their deep religious beliefs and experiences served the same purpose. Your story and others I’ve read have really helped me understand the turmoil they’re facing internally and externally, and to analyze what I’ve been feeling to this point. Perhaps a brief trip into the unknown is in my future.
- jseliger 3y agoYou're welcome and I'm sorry to hear about your parents; some things in life just suck and dying from cancer is among them. I know extremely religious people who find psychedelics enhance their religious feelings and practice (that said I obviously know nothing about your parents). If you're curious, send an email.
- ChatGTP 3y agoWhat a brave man to write this piece. Amazing strength. The persistent intrusive thoughts about whether this thing, life, is worth it, remain. They’re not questions therapy can help with. They’re questions intrinsic to the damage. This sucks but I wonder if it’s nature way of making the end easier? At some point one must reason that eternal rest is a better option ?
- colordrops 3y agoAssuming the scientific understanding of nature in which the main driver of evolution is successful reproduction, there doesn't seem to be much room for a mechanism to emerge from natural processes that makes dying easier. That being said, I'm not much of a materialist these days and think there is something more to reality than purely mechanistic physical laws.
- ChatGTP 3y agochildbirth is another comparable situation. By 9 months it’s so uncomfortable that most women who are afraid to have children just want to get labor started. I know it doesn’t fit in with purely mechanistic laws either but it is a thing.
- deleted 3y ago[deleted]
- deleted 3y ago[deleted]
- EZ-E 3y agoI do not know how people can deal with the reality of their own death - every time I think about deeply or read an article about it it just destroys my entire day. The author is much braver than I am. I am very scared of death, and what happens before (illness, losing autonomy). So far I haven't found a way to accept it.
- byvirtueof 3y agoHave you ever been very ill, or ill for longer periods of time? My guess is that much of a fear of death is a fear of the unknown, and a fear of unknown suffering. People who have been deathly or chronically ill have less fear of death than those who have been healthy most of their lives, partly because they know suffering, and partly because death can be promise of a future relief rather than a punishment for them.
- bowsamic 3y agoI don’t think that’s relevant. The fear here is fear of oblivion, of not existing, not fear of pain
- rob74 3y agoSame for me - I think this is a profound contradiction between the unique ability of humans to think about the future (which enables them to know that they will one day die) and the basic self-preservation instinct which all living beings have.
- sschueller 3y agoAs someone who does not fear death anymore I would ask you to find out what exactly it is you fear? If you have regrets or something you have not done you want to do you should either go do that or be at peace that you did not do it. Sometimes you also need to realize that what you are regretting you should not be. For example sometimes not taking advantage of an opportunity which you may be regretting actually led to something else much greater. If you fear for the people around you having to deal with your death you can take precautions and make their life easier. If you fear debilitating illness you always have the option of going when you decide[1] and there is absolutely nothing wrong with that. [1] https://www.exit.ch/en/ https://www.exit.ch/en/
- coolThingsFirst 3y agoLife just sucks
- Fire-Dragon-DoL 3y agoI'm sure it's very subjective, but the author made a good job highlighting there are some beauties to it
- iancmceachern 3y agoYou have it backwards, life is amazing, death and dying sucks
- coolThingsFirst 3y agoLife just sucks and my experience has been that it has gotten progressively worse. In 20s at least i had the consolation of being young but bow at early 30s there’s just nothing much to look forward to. It’s just a drag
- arpa 3y agowelcome to life! Isn't it exciting?
- WJW 3y agoCan't confirm tbh. I'm now in my late thirties and enjoying life quite a bit. Definitely better than when I was in my twenties. Looking forward to hopefully another 40+ years of this.
- bowsamic 3y agoUnsurprisingly, not everyone is mentally ill
- coolThingsFirst 3y agoPretty sure mentally ill people go on HN to insult people with whose opinions they don't agree with
- bowsamic 3y agoMentally well people do that too
- coolThingsFirst 3y agoSeek help
- bowsamic 3y agoI am, but why do you say this?
- bowsamic 3y ago[flagged]
- saiya-jin 3y agoYou can't be technically addicted to stuff like psylocybin, not in physical way. The more frequently you take it, the less effect it has to the point where there is almost none, losing any reason to take it. Clearly you have no clue what you write about in your snarky way, there are numerous other incorrect statements in those few sentences, but something tells me there is no point going deeper on those.
- bowsamic 3y agoUnfortunately I know all too well, both dealing with severe mental illness caused in myself by these drugs, and in others. These drugs are very dangerous and should remain illegal. At most they should be used in extreme situations under strict guidance How do you expect me to support something that has destroyed mine and others' mental health? I would give anything to go back to having never taken these drugs
- maxbond 3y ago> How do you expect me to support something that has destroyed mine and others' mental health? I'm sorry to hear that you were hurt by psilocybin and other drugs. Unfortunately I think a recreational drug culture is ill equipped to understand and manage the hazards of powerful hallucinogenics drugs, and that too many people are left with bad and even traumatic experiences. But doesn't this go both ways? How do you expect people who found a profound benefit from psilocybin not to discuss their experiences? I can understand advocating for caution, absolutely, but you're implying in your earlier comment that you believe they're deluding themselves. Why would your experience invalidate theirs?
- bowsamic 3y agoBecause I personally believe that we should learn to live with our lives as the mind presents it to us instead of trying to fool ourselves into thinking our altered drug states give us some kind of deeper insight into reality, which they obviously don't. They disconnect us more from the universe and our own lives
- PostOnce 3y agoAside from sympathy, I also feel a sense of awe, admiration, and respect for the fighting spirit this guy has. He had his tongue removed to increase his odds, is struggling with the basic sensations of being alive, is also acutely aware of staring death in the face, and yet he's talking about clinical trials and the future. Even if he loses the battle, I feel there is something gained by having fought it. But of course, no matter how grim the odds, a loss is never guaranteed. I hope he someday writes a post titled "remission". Godspeed, Jake.
- mattbgates 3y agoHe was here... and then he was gone. >He had no fear. He would always say, “We can’t fight it and eventually we all have to go sometime.” For the several years prior, we’d drive past the cemetary he was going to be buried at, as it was on the way to his doctor’s appointments, and I’d say to him, “That’s where you’re going to lie for an eternity.” And he would say, “Don’t remind me.” The last time I drove him to the hospital and we were driving past, I said the same thing to him. And this time, he said to me, “I think I’m ready.” Read if you dare... https://confessionsoftheprofessions.com/the-cuban-missile-crisis-veteran/ https://confessionsoftheprofessions.com/the-cuban-missile-cr...
- c0balt 3y agoAt the end of the article is a link to his gofundme: https://www.gofundme.com/f/help-the-fight-against-cancer-with-jake-s https://www.gofundme.com/f/help-the-fight-against-cancer-wit... Consider checking out for more background and information (or maybe to donate).
- majikaja 3y agoAll you people who are worried about death, why aren't you working to reduce aging and disease? Or at least donating.
- bowsamic 3y agoBecause that is totally irrelevant? What does any of that have to do with fear of death?
- iancmceachern 3y agoThat isn't the point of this article or the comments here. It's all about accepting the inevitable and seeing the beauty in it, not fighting against that.
- Towaway69 3y agoFor those left behind, there is a piece over at aeon[0] that helped me. It speaks of post grief disorder that can be very real. [0]=https://aeon.co/essays/how-to-ease-the-seemingly-endless-pain-of-prolonged-grief https://aeon.co/essays/how-to-ease-the-seemingly-endless-pai...
- darepublic 3y agoAuthor in so much suffering yet producing such lucid descriptions. Really puts the stoicism philosophy to a test