Starting Hospice | Hacker News Reader

Starting Hospice

jakeseliger.com

1,209 pointsjdkee145 comments

Hacker News, thank you for all the links and all the great reading. Now I have to say goodbye.

I’m with my wife Bess (https://bessstillman.substack.com/) and my brother Sam, and crying, but it is okay. At the end of Lord of the Rings Gandalf says to the hobbits, "Go in peace! I will not say: do not weep; for not all tears are an evil.” And that is how I feel now. Ending prematurely hurts, but all things must end, and my time to end is upon me.

Thank you for sharing so much of yourself with us these past months.

Gandalf also said, "End? No, the journey doesn't end here. Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it."

Great quote.

Also, props for a cool personal blog and project list, I'm listening to Phasmaphobe now... congrats on creating and publishing a full-length album! No easy feat.

He did? I'm surprised to find a quote I'm not familiar with. On what page of which edition did he say this?

Gandalf says this in the movies, not in the book. However the descriptive language is drawn from Frodo's dream in the barrow downs and his experience sailing into west at the end of LOTR.

> And then it seemed to him that as in his dream in the house of Bombadil, the grey rain-curtain turned all to silver glass and was rolled back, and he beheld white shores and beyond them a far green country under a swift sunrise.

But "sailing into the west" is not a metaphor for death, Valinor is not a metaphor for heaven (as it's a real place within LOTR world where e.g. Frodo dies). Gandalf's movie quote does not appear to be based on book material.

> But "sailing into the west" is not a metaphor for death, Valinor is not a metaphor for heaven

Tolkien wasn't a fan of allegory that's for sure and you won't find a 1:1 between his fictional works and his own religious beliefs but a devout Catholic like him was definitely channelling heaven as the new glorified Eden to some degree when describing the "undying lands" that were lifted up into the heavens after the corruption and treachery of Numenor and ruled by the great spiritual powers that rule as stewards for the Creator. The movie did paraphrase, and perhaps I'm wrong but I don't think its something that Tolkien would have been offended by.

Jake, I am so, so sorry for everything you’ve gone through and wish peace for you and the best for your loved ones. I’ve followed your story here and always been touched by your candor. Thank you for all your contributions. I was rooting for a better outcome and am sorry that it hasn’t arrived. Goodbye.

Thank you, Jake! ---and your wife --- for your links and great reading that highlight the importance of clinical trials for mRNA tumor vaccines! Will keep posting to HN her articles when they come out. https://archive.ph/bessstillman.substack.com

(Archive listing jseliger's wife Bess Stillman on clinical trials (including how to navigate them as patients) as well as comments)

UPDATE:

other concretes that have been mentioned, that are worth highlighting:

0) assume good faith & promote (& improve) Right-to-Try

https://www.fda.gov/media/133864/download#:~:text=Right%20to....

1) donate to (or even joining!) HN-adjacent Arc Institute (mRNA research)

2) sue the FDA for clinical trials, in general.

Here's one case https://www.theatlantic.com/health/archive/2023/10/xocova-en...

See you in another life, brother. So long, and thanks for all the fish.

Thanks for sharing your journey with the world. I haven't read them all, but I have read several and while terrifying I know they will help others navigating similar journeys.

Rest well and all the love for those close to you.

Rest easy, and thank you for sharing your experience with us. I’ve read your words for such a long time now, and I’m happier for it; thank you again

Jake, no matter what happens in the days ahead, I wish you peace and equanimity. Thank you for sharing your journey with the world.

Thank you Jake, it's been real to follow these developments.

You've touched a lot of us, and if leaving impressionable impacts on others is the highest quantifiable order in this life -- I think this was a job very well done :) and you've inspired many to continue that cycle. Rest well, see you on the other side.

Thank you for your posts. They meant a lot to me and I will use them to try and help others. They have helped me.

You inspired me to make changes I needed to make.

Infinite love to you and your family.

Thank you for everything Jake, See you on the other side

This really sucks. I don't know you, but I don't want this for you, but there's nothing I can do.

I've been reading your writings for a few months and I can assure you that you're on a lot of strangers' minds, passively making positive change in other people. I wish all the best to you and your family.

Thank you for pieces such as the following one on the unreasonable promise of mRNA vaccines and the right to try new treatments:

https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... .

HN discussion:

https://news.ycombinator.com/item?id=36827438

Wishing you the best Jake. Thanks for sharing your story with us. I sort of believe the little bit of what Douglas Hofstadter said in I am a strange loop, essentially, small bits of your soul live on in the rest of us who read your story and interacted with you here.

Thank you. You don't know me but your story and life has had a profound impact on my perspective on what’s important. Thank you.

Amen.

It has been heartbreaking to follow, but all the same an important documentation. You are a true hero. I am at a loss to know what else to say.

Thanks for sharing. Your dignity and courage is inspiring.

Hey this might be kind of a weird thing to say but screw it. I’ve been suicidal recently and seriously considered ending my life. One reason I have decided to hold on and get help is inspiring stories like your own. I look at how much dignity, energy, and love you have espoused even while having a terminal illness and I feel ashamed. Some people out there have been given so little and done amazing things with it, and I’ve been given so much and done nothing. In this strange way I feel like I owe you something even though you’re a stranger on the Internet. I want to be someone like you who is strong. Just wanted to let you know that.

With love, please consider - the "shame" you're describing is really something else in a mask.

Perhaps... a longing? Maybe this stranger has helped you find the place where you do truly long for life.

Let the feeling be. Don't label it shame. Don't label it longing. Just let it be. Give it space. Cry if you feel like it. Laugh if you feel like it. Just feel it.

And when you're ready to speak about this with others, there will be many, many willing to be there for you. You are loved.

Another perspective: shame can be good. Feel it. Shame for who you are can light a fire in you, can propel you into transformation. Shame for one's past self is normal, if one has undergone any growth, and in time one may forgive himself. But not now, not when you know yourself and you see all the ways you are lacking. Not when you are so wholly disappointed in your life that you want to end it. _Longing_ for a different life will not result in change. Shame, and deeply ruminating on it can. In time you will transform and can forgive the past self you are ashamed of, but not now in your time of desperate need.

I think it’s worth drawing a distinction between guilt, which can be positive, and shame, almost never. Guilt is feeling badly because you know you’ve done wrong. Shame is feeling badly because other people know you’ve done wrong.

I still feel shame can be noble. To try to live up to the example of others and feel ashamed that you are not anywhere near their greatness. Not guilty, because you have not done wrong, but shame, because you are not enough compared to another.

I've been reading Five Chimneys by Olga Lengyel, a Holocaust survivor who went through the most terrible of ordeals. She became suicidal and a Frenchman who got her involved in the camp resistance told her that if there were just one reason not to do it, it was so she could do little things to make the lives of people around her better. She took this to heart and it pushed her through to eventual liberation and living till her 90s. I appreciate words are cheap, but I found this inspiring and a good way to think about life when all else seems lost.

Please don't be ashamed for your thoughts, nor feelings. Each of us have struggles of our own and we cannot compare our paths or strength with others. Just because some people cope differently, doesn't mean there is anything wrong with you or the way you process pain. Each of us is unique, with our own backstory.

I have recently also struggled with the decision whether to end my life. I was afraid to seek help and to talk to a professional.

If you ever feel like you need someone to listen or just talk to, please reach out at Twitter or at <username>@gmail.com

It takes a lot of courage to write what you've put into words out in the world, even if anonymously. You have value and it is possible to find the help, support and love you need. You can do it; you are strong enough. Please reach out: https://988lifeline.org/

Your fighting spirit and clarity of mind have been an inspiration. Very few patients struggle on their own behalves as you and Bess have done -- and in such a flawed and labyrinthine medical-regulatory environment. Thank you for writing about it... I only wish they had made things easier for you. And I hope that the coming days bring peace and comfort.

Take care Jake. It was a privilege to follow along, and I wish you peace on your journey.

Thanks for everything you've written, it will be a useful legacy to many.

Take care of you and yours as you can. My thoughts are with you and Bess who has been a true champion through your ordeal.

Godspeed, Jake. Thank you.

Go in peace. Through your writing you've made a positive impact on me, and I'm sure others in your time here. That's all any of us ever hope to do. Go in peace.

Always appreciated seeing your "byline" on things around here and elsewhere. I'll miss you.

Good luck, to the extent that's even possible anymore.

See ya on the other side. Or not.

You have been such an inspiration in how to make something impossible almost bearable. You are doing the hardest of hard things so well. Thank you for sharing and hope you find peace

Thank you for your writing - its taught me a lot about a lot of things. One concrete highlight is how important patient agency is in the patient-doctor relationship - which you've written about a few times.

I'm truly deeply sorry about this whole situation. Thank you for sharing all your knowledge.

I hope too to accomplish at least two concrete ends:

1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-...

2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the.... A drug like petosemtamab (MCLA-158), which I was on from Sept. 27 2023 to March 29 2024, should already be approved, instead of continuing to wander around in clinical trials.

Have you discussed anything about targeted therapies? For example, how the different genetic makeup of some tumors are used to treat them. Keytruda comes to mind.

https://www.keytruda.com/

Antibody drug conjugates also seem to be discussed often:

https://www.mdanderson.org/cancerwise/antibody-drug-conjugat...

In his blog, he discusses Keytruda. https://jakeseliger.com/2023/12/19/what-if-things-go-right-w...

I see where he discusses it. He said it only works for a small group and not for him.

He’s mentions trying drugs that target EGFR mutations, which I believe tries to stop the blood supply to the tumor. Targeting specific protein receptors, like HER2 in breast cancer, seems to be promising.

https://my.clevelandclinic.org/health/diseases/25213-her2-po...

RAS is a target for (some) colon and pancreatic cancers:

https://www.cancer.gov/research/key-initiatives/ras#:~:text=....

Are you able to bypass the FDA with the Right to Try act?

https://www.fda.gov/media/133864/download#:~:text=Right%20to....

The FDA is a joke. I mean that in the kindest way possible as someone with long covid waiting for the FDA to allow me access to previous covid therapeutics that show promise in this disease.

Yes the clinical trial system is super opaque and it's not clear what benefit one can get if one doesn't understand the process or even the risk profile of it.

This lack of patient agency applies to all of medicine, really.

I plan to improve patient-doctor relationship in general. Gut tells me that enabling educative access to the basic sciences component of medical school and paring it down to patient specific focus, we can enable much higher patient agency through better patient-doctor communication and a deeper understanding of ones condition.

More importantly a better decision making process and ability to query and understand the doctor.

I've been through this with my wife and it's just so important.

goodbye. thank you for everything you've given us

All the best to you Jake

Thank you for sharing your journey, Jake. Go well, with peace and love.

Thank you for writing such a transparent and deeply touching essay. Even if it was painful to read because the topic feel unsettling to me, it made me reflect a lot about life and gratefulness. I look forward to read the rest of the things you have posted

Reading your updates has been important to me since I started seeing your posts.

Thank you for taking the time and energy during the most difficult of circumstances to share your journey with the rest of us. I know it's given me a lot to think about and a lot to be grateful for.

Best of luck to you and yours as you come to the end of the journey. You'll be in my thoughts.

Thank you for sharing your story, may the end come peacefully with family at your side, wishing you a safe journey to where we all must go someday to be reunited. My heartfelt condolences brother.

Thank you for all the work and sharing your journey.

Absolutely heartbreaking. Your writing has been a gift. Thank you for everything.

Thank you for your writing. I'm sorry it has come to this, and I don't quite know what to write other than that you've provided lots of valuable insight to an area I was unaware of.

Thank you for everything.

I watched your efforts and have tried applying them to my loved one. To be human, to be one with intelligence to figure things out as you have, the digital touch you have made, thank you. Go in peace.

Jake, I have read your previous posts and am deeply saddened to see this post; if there are LOTR references to be made then perhaps the part in the Appendix where Aragorn tells Arwen that "beyond the circles of the world there is more than memory" can be mentioned.

I’m sorry for both of you. I thank you for your words. As someone who’s right behind you in line, your words mean more to me (and hit harder, and cut deeper) than I expect they do for many.

Take my love with you both. See you on the other side.

https://archive.ph/bessstillman.substack.com

(Archive listing jseliger's wife Bess Stillman on clinical trials (including how to navigate them as patients) as well as comments)

UPDATE:

other concretes that have been mentioned, that are worth highlighting:

0) Promoting (& improving) Right to Try

https://www.fda.gov/media/133864/download#:~:text=Right%20to....

1) donating to (or even joining!) Arc Institute (mRNA research)

2) suing the FDA for clinical trials, in general.

Here's one case https://www.theatlantic.com/health/archive/2023/10/xocova-en...

Bon voyage, Jake. I follow in your steps from the same diagnosis. Thank you for bravely sharing your experience and helping others in similar predicaments <3

Is there no way for you to do the Dallas trial?:(

Thank you for documenting your journey, and sharing something so difficult and intimate with us. It is really eye opening. I wish your family all the best and hope you find peace.

Will your blog remain available to share with others?

You put words onto page with which given a thousand I could not have equaled. We will all follow, in time.

    "I see life as a roadside inn where I have to stay until the coach from the abyss pulls up. I don't know where it will take me, because I don't know anything. I could see this inn as a prison, for I'm compelled to wait in it; I could see it as a social center, for it's here that I meet others. But I'm neither impatient nor common. I leave who will to stay shut up in their rooms, sprawled out on beds where they sleeplessly wait, and I leave who will to chat in the parlors, from where their songs and voices conveniently drift out here to me. I'm sitting at the door, feasting my eyes and ears on the colors and sounds of the landscape, and I softly sing - for myself alone - wispy songs I compose while waiting.

     Night will fall on us all and the coach will pull up. I enjoy the breeze I'm given and the soul I'm given to enjoy it with, and I no longer question or seek. If what I write in the book of travellers can, when read by others at some future date, also entertain them on their journey, then fine. If they don't read it, or are not entertained, that's fine too."

Fernando Pessoa, The Book of Disquiet

“I wish it need not have happened in my time," said Frodo. "So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

Godspeed, enjoy your family.

3 and 1/2 years ago I lost my mate prematurely. A long protracted illness with much pain and suffering. I'm sorry for you and your wife are going through and have gone through. It is very hard.

There were a lot of things that helped me through. If your wife would ever like to talk to someone who's been through it, even though I'm a guy, she is always welcome to reach out to me.

Username at gmail.

RIP Jake.

from https://jakeseliger.com/2024/08/04/starting-hospice-the-end/...:

    August 8, 2024 at 5:17 pm
    Hello, this is Sam, Jake’s brother.

    He passed away peacefully last night. It was a merciful end to his suffering. Thank you all for your kindness. It meant everything to him.

    The Story’s Story will live on, in some fashion, once we are doing picking up the pieces of our shattered hearts.

    With love,

    Sam

[edit] The 7th update at his GoFundMe page, https://www.gofundme.com/f/help-the-fight-against-cancer-wit... :

    Well, I said I wouldn't write another update, but I feel as though Jake's supporters deserve to know.

    He passed away last night, peacefully, in the loving arms of his wife. It was a merciful end to an inhuman amount of suffering.

    Jake has detailed his wishes in his final website post here: https://jakeseliger.com/2024/08/04/starting-hospice-the-end/

    He wanted me to tell you that your support meant everything to him. It kept him going, it kept him fighting, it kept him able to travel for clinical trials, and inspired him to try to make it for the birth of his daugther.

    Unfortunately, the disease had other plans.

    Thank you so very much.

    - Sam and family

Jake, you don't know me but I want to thank you and Bess for sharing what you've been going through with us on here. It would have been easier not to fight this hard, and not to write all of this, and I appreciate that you did. If you can, and I know maybe you can't, you should write a personal letter to your daughter, to read when she is old enough to understand how much you love her, even though you never met her. Your story makes me want to do the same for my son, even though I am not dying as far as I know. Bess's article "Forever is such a short, long time" deeply affected me, and I will be quoting it directly when I say my wedding vows in a few weeks. Her vision of what love and good relationship means is deeply wise, and you are both lucky to have each other.

Congratulations on your wedding, UniverseHacker and I'm deeply touched to be part of your wedding vows. Jake and I have spent this last year trying to leave nothing go unsaid between us and I wish a lifetime of the same for you and your spouse. It's transformative to lay it all on the table, and to learn that the best opinions of yourself lie in the person you love. A good partnership changes everything. I hope you have a wonderful marriage and feel free to reach out at any time. (drbstillman@gmail.com)

Thank you, I will send you an e-mail after the wedding

I highly recommend this film "Griefwalker" to anyone anytime death comes up. I find Stephen's views fascinating and for an end that meets us all we sure like to avoid talking about death.

https://www.nfb.ca/film/griefwalker/

For me it's The Fountain.

My partner died of an internal SCC in their early 40s during the COVID-19 pandemic lockdowns, over a course of 9 months.

After the tumor board of the only cancer treatment center both covered by our insurance and willing to take us on refused to pursue anything but standard ovarian chemotherapy (which didn't work at all on ovarian SCC, which we already knew). Because of travel restrictions and the total lack of vaccines at the time, we couldn't travel to seek more aggressive treatment, so we pursued clinical trials.

My partner qualified for a trial only after chemotherapy started doing nerve damage, and was approved only after being judged too ill by the oncologist to take the drugs when they finally arrived. The courier showed up with $20,000 of useless drugs two days before hospice started. After my partner's death, I was told to dump them, unopened, after begging the oncologist and company to find someone else who could use them.

Bess' advocacy for access to trials for terminal and near-terminal patients is invaluable. If there's anything people can try to do, it's to help in this effort long before you or a loved one become too sick to benefit from it.

Jake has a hard road ahead, and so does Bess. All we can do is push to make sure nobody else has to fight as hard for, or be outright refused, the ability to fight for even potentially effective treatment.

that's a tragic story and I'm sorry for your loss. did you consider taking the medication anyway in defiance of the oncologist?

Jake's wife here - I'm so sorry for the loss of your partner and the incredible frustrations of dealing with a system that requires so much self-advocacy, and even then, falls so short. I plan to continue advocating for patients as much as possible so that they don't suffer the way your partner and Jake have had to while trying to stay alive, as if it isn't already stressful enough. If you'd like to reach out, I'll eventually be trying to present patient stories and push for change directly at ASCO and other oncology conferences and I'd love to include your story in that push. Feel free to reach out anytime (DrBStillman@gmail.com)

Your courage in not withdrawing in your sickness, of being open with all of us about your journey and what you've learned, is heroic. It's an amazing example of how to be a mensch to leave behind for your daughter.

I hope this is an appropriate place to ask.

Say I am eating well, exercising consistently, getting enough sleep.

For a male in his 40s, what are the best bang-for-the-buck ways to detect cancer before it becomes life-threatening?

Talk to your doctor, and ask to be screened for all common cancers. A colonoscopy is in your future (I just had one). Also ask for a Prostate-Specific Antigen (PSA) Test. Also look into the HPV vaccine.

HPV vaccine has to be the biggest bang for buck. To anyone reading this, you should get it at any age because you likely haven't been exposed to all the strains that e.g. Gardasil-9 protects you from. You should also get it if you're male despite it being initially known as the cervical cancer vaccine because HPV causes oral cancers and you also don't want to potentially be a carrier.

Don't do this. Nearly all cancer tests are overly sensitive, and not great at detecting the cancers you care about (the ones that will progress).

If you run out and get a bunch of random cancer tests, you are basically ensuring that you will get unnecessary and painful treatment for a finding that probably wouldn't have harmed you in the first place.

It's not a satisfying answer, but it's true. The reason most cancers are found late is because there's no effective alternative.

Agreed. For more see https://www.npr.org/sections/health-shots/2018/08/18/6395885...

Yes. You are correct. Patent is providing bad advice about PSA

https://www.bmj.com/content/362/bmj.k3519

Colo , when appropriate , is good but not as a general interest test:

https://jamanetwork.com/journals/jama/fullarticle/2529486

Whole body MRI is fairly available in major metro areas, though not cheap and not very sensitive or specific.

The Galleri blood test screens for a range of cancers (sensitivity varies by cancer) and is ~$900, although you need a doctor to order it. You also may not technically be within the intended use population unless you have some risk factors (e.g. you are older than 50, or have family history of cancer).

Colonoscopy is a good idea, given the rising rates of colon cancer among younger adults.

Find a primary doctor you like and stick with them. Do your check ups, talk with them, communicate anything odd.

Go to a dermatologist and get a mole map. Get your tests done on schedule when you should be.

Don’t smoke cigarettes, or work in a high risk job around carcinogens.

Don't ignore weird lumps and bumps, but the #1 bang for your buck is getting a colonoscopy

The actual stats on the efficacy of early detection are extremely surprising. This [1] is a random study, among many, about breast cancer screening. Breast cancer mortality rates have been trending downward sharply, and this correlated with a sharp rise in screening. People naturally assumed this was causal, but oddly enough the exact same reduction in mortality has also been observed in people who have not participated in early screening at all. So it seems that generally better treatments are the main reason.

The 'paradox' of genuinely higher survival rates with early detection is explained by the fact that the survival rates are measured from the time of diagnosis. If a person with undiagnosed cancer is diagnosed after 7 years with said cancer, and then dies the following year, then he is considered to have had 1 year of survival. By contrast if somebody is diagnosed at year 1 and then dies 7 years later from the cancer, then they are considered to have 7 years of survival. They lived exactly the same length with cancer, but the survival times after diagnoses are markedly different.

This applies for most cancers. In my prior readings on this topic, the one screening that had a statistically significant effect on life expectancy was a certain type of colonoscopy, but even in that case the effect was quite small, something like 3 months IIRC. I think the overall take away is that outside of healthy living, do what makes you feel most comfortable. Even if they may not be highly effective, screenings would provide some people significant mental comfort. If you're one of them, more power to you. If you're fine without, then that's also great.

[1] - https://www.sciencedaily.com/releases/2018/09/180912133536.h...

If our civilization survives, we will, one day, through one manner or another, banish death. If that day comes, when it comes, I hope Jake's name is remembered for the monument to all who we lost, all of us who've had to grow and live and find meaning under the specter.

> If our civilization survives,

... that is to - perhaps - say "if we manage to survive the 'collective' death that seems oftentimes inevitable" ...

> we will, one day, through one manner or another, banish death.

How do I ever wish I had your certainty - I do not mean it as a backhanded criticism. I mean it literally.-

I don't know about banishing death entirely, but I do believe (echoing the sentiment of "if our civilization survives") that we'll significantly, massively increase life expectancy in the next century (like by a factor of two or more), and/or discover how to digitize or preserve brains to the degree that we'll be able to live on in some capacity beyond the deaths of our bodies.

If this does turn out to be true, it's a bummer that many/most of us alive today are likely too early to benefit from it.

Hi, I found the name of the KIT spinoff, it's called Glassomer.

Unfortunately, they have been undercut in terms of temperature. Some guys in the US claim they can 3d print glass at ~200 deg Celsius..

So Glassomer is probably dead in the water (from the POV of VCs) unless they can find someway to beat the 200 deg C record, or to do it without UV.

Bless ya, Jake. Go be comfortable now, and may you and Bess both have peace.

Goodbye, Jake. I enjoyed your blog, and I felt like I knew you, in the way one does when one spends hours reading someone else's thoughts.

I'll miss you.

Hi Jake, I lost my father to cancer this year, he was 59. I hope you know your memory lives with the people that are with you, now and in the future. I understand what your family is going through even though I can't understand your pain, thanks for putting your writings out there, take care.

I lost my dad last year, Saturday was officially the anniversary of his passing actually, from small cell lung cancer. Three weeks from diagnosis to his death, and I’m re-living it all in my head reading this.

There’s so many places I could go with that as a springboard, but, honestly, I’m kind of just airing my dirty laundry out right now. Losing loved ones sucks, and I wish Jake’s family all the best through the troubling times that are yet to come.

My dad was also lung cancer, we got some more time (almost a year between diagnosis and his death).

Sadly, I'm already the 4th person in my friend group to lose their dad even though we're less than 30 years old. It also means I had other people that understood and that I could talk to. I hope you're talking to friends or professionals.

I know it'll get better.

Thanks for everything Jake. I only have a vague understanding of what you are going through after seeing my grandma go through some of the same things, yet I still can’t imagine how hard it is for you and your family.

Wishing you and Bess all the best and if you or her need anything feel free to reach out. Godspeed

My father-in-law died of cancer late last year. He commented that cancer was a kind disease because it allowed him the luxury of planning his last days, making peace, and saying goodbye.

I wish you happiness, love, and comfort right up to the end.

I do not know you, but I'd like to send you and your family my best wishes and empathy.

Here's a couple mind-bending NDE experience reports from doctors:

https://www.youtube.com/watch?v=JL1oDuvQR08

https://youtu.be/gpfriTZDWCY?t=2777

See you on the other side

Thank you for sharing these.

These are very interesting.

I used to be convinced that NDEs were either made up, or the brain rebooting or something like that. I'm not so sure about it anymore. I'm not religious (not anti-religious either), but there are a lot of options between nothingness and a religious expectation of an afterlife. Maybe these NDEs are indicators of something else. I was surprised to see that almost 20% of people that "die" report them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172100/

Thanks for posting these.

> options between nothingness and a religious expectation of an afterlife.

May I ask what you consider some of those are? Honestly curious.-

This is all speculation based on things I've heard, so take it with a big grain of salt.

I used to be on a forum with somebody who posted about having an excellent relationship with his dead wife. He said they interact regularly. He was not religious. Normally I would think he's a crackpot or somebody trying to sell something, but he was not either of those things. He came across as very honest and intelligent and sincere. The forum had nothing to do with life after death, but it came up occasionally. His other comments were always very rational.

There are others, e.g. Bernardo Kastrup, who think that there is a single consciousness, and that life as a human (if I understand correctly, any physical life) is like when somebody has multiple personalities. When we die (according to Kastrup) we "remember" that we are part of that consciousness.

I think panpsychism in general is a non-religious basis for at least the possibility that consciousness doesn't have to be physical. Consciousness could be fundamental.

To be clear, I don't believe any of those things, but I don't rule them out either.

The same goes for religious belief. My reasons for not believing might be due to perspective. I doubt that my dogs had any clue as to why I put them on a leash. I (and humans in general) could be in a similar situation, and that would change a lot. I suspect we are in a similar situation as far as making assumptions that work for us, but are not necessarily grounded in reality. I think it's very likely that there are things that we don't and maybe can't understand.

> Consciousness could be fundamental.

Oh, it very definitely is. It's an invariant "information" substrate of the universe.-

PS. I am personally convinced that one of the things that AI and the AGI search will yield is more clarity into - or even the discovery or demonstration - of that fact.-

Sorry for the cynical take.

I really want to believe in something after death, but watching my Grandma die of Alzheimers makes me skeptical. She was completely gone before her body died. She did not remember her name, or any of us. Whatever intangible thing was "her" was long gone. On scans of her brain you could see huge pieces just atrophied away.

How can we have some intangible "me" that transcends my physical form if that thing literally disappears as my physical form degrades. What part of me goes on? 20 year old me? 50 year old me? The broken remnants of when I finally die?

We have accounts of people on strong psychedelics that are similar to these NDE and we know the body produces endogenous psychedelics during crisis. I would postulate many of these life after death type NDE are just strong Psychedelic experiences. Most NDE accounts are just: "I remember right before unconsciousness and then my next memory was waking up".

Reminds me of Novaspirit Tech's announcement that he's got cancer :( [1]

So sorry to hear these incredible people's sufferings

[1] https://www.youtube.com/watch?v=aFh5AuV_CJU

Thank you to you and Bess for your writing and sharing your story with the world. I have found it to be personally very helpful.

Thank you, jseliger. Thank you, HN.

Often I feel very at home here. A community which designed ethics into its very core.

Goodbye, Jake. Thank you for your generosity in sharing your struggles, even now as it comes to its end. As a 20-something young man with hopefully many years ahead of me, your posts have encouraged me to live better, love more, and have more appreciation. Take it as some consolation that I and many others will read and reread your writings long after you're gone.

Bess and Athena and all your loved ones are in the intentions of my heart.

God bless you and your family. You are a brave man who has helped many.

I have always like the quote "Death the price of entry you pay on the exit". We all have to pay it at some point. All that matters is that you had a grand time.

Take it easy. Have a laugh where you can. Embrace the love. And take that final curtain call like a champ!

“Men must endure/Their going hence, even as their coming hither: Ripeness is all.”

Thank you Jake. I hope at the end they can just .. ignore any best practices of responsible narcotics dosing.

I used to think that people who were sick and stubbornly refused to go to the doctor were silly, but now, after reading enough cancer stories, I fully understand them and would do the same.

If I got a cancer that required chemo, I wouldn't want to know. Even if the survival rate was 90% with treatment, the mental turmoil would not be worth it for me. I'd rather have the 5% survival rate without treatment and without awareness of the problem.

Anyway I'm 35 now and I already feel like I've lived a full life. I feel like I've already seen and done everything I wanted to do 100 times over. Nowadays, every experience I have is derivative of some other past experience. My enjoyment of life is greedy and repetitive almost to the point of vulgarity.

When I hear about billionaires who are approaching 100 and undertaking radical treatments to live forever, I just don't get it. They've probably experienced way more things than I have, 100 times better than I have, yet they want more... Makes me wonder if they're fully feeling their lives. They must have a dull senses or poor emotional memory.

Rest easy. My thoughts are with you and your family.

Your words have made a wide impact on this corner of the internet, and I’m lucky to have experienced them.

I don't know what to say.

We were all dead before we were born. What's to say we won't be born again after death?

I'm sorry.

Thank you for everything.

My mom just passed from ALS and now this. It's so unfair that we have essentially no working treatments for these, even though they always tout how advanced medicine is but I feel like it really is not advanced at all

Hi Jake. We do not know each other, but in reading your story I can tell you that you are loved even by we who do not know you. May the Lord God bless you and your family and provide the peace needed.

It's just ridiculous how the FDA works. They have no issue fast forwarding the process when it comes to approving an experimental mRNA vaccine to force upon billions of healthy people, but try to get them to approve an mRNA medicine for people who are literally on their death bed and suddenly, it's not safe enough. What a joke.

I learned a lot from you Jake. I hope you two see each other on the other side.

All love and solidarity your way. Thank you for your courage and kindness.

What a weird time to come across this blog. I went to the dermatologist today for a biopsy. I’m gonna spend the next week obsessing and worrying about it until I get the results.

I wouldn't worry too much, while skin cancer is common, only about 1% of skin cancers are serious (melanoma), and even that has a 95% survival rate if you catch it early.

Thanks so much for sharing your struggles and wisdom.

I feel the world is a better place, for this kind of thing.

"There are rules and bureaucracy even in death"

It sure isn't like the movies.

Dying is complicated.

Just wanted to say thank you and farewell. You are in good hands with hospice.

This is absolutely heartbreaking... Thanks for sharing. So sorry.

Tough to read. Courageous and generous of you to share. God bless.

Lost my wife about 1.5 years ago. It was expected and unexpected at the same time. Long metastatic cancer treatment that ended all of the sudden, in a few weeks of unconsciousness ("coma") with an auto immune brain disease, likely caused by chemo.

As the partner left behind, I nothing but empathy to Bess. As an avid, ultra pragmatic, HN reader though, I've gathered resources so I'll list them here:

Forums / chats:

https://www.reddit.com/r/widowers/ - This one I used immediately after. Yelling into the void. Crying. Having other people cry with me. Make sure I'm heard.

https://discord.gg/CFQfCdby - /r/widowers discord. This one is "good" for the first few days / weeks / months, when the pain is great and the sense of lost is overcoming and you just need someone to talk with, someone who's been through this, right now. Everyone is friendly, rules to keep things sane and not triggering are in effect.

Facebook groups - I know, ugh. But it helps to see other people in the same boat. Somehow. A little. For me it was "Young and Widowed With Children" (well, me) and some of the black humor groups e.g. "Widow(er) Humor". Find your tribe. It really does help.

Books:

It's ok you're not ok - https://www.amazon.com/Its-That-Youre-Not-Understand/dp/1622... - This is "the book". Everyone recommends it and it's justified. If you can't bring yourself to read, get the audible version. I did, it was easier to lie in bed with eyes closed.

Irreverent Grief Guide - https://www.amazon.com/gp/product/B08L5RRJ9D - this one is a "how to" guide. I mean a real "how to", emotionally. I, and possibly many on /r/widowers/ found it priceless.

Videos:

https://www.youtube.com/watch?v=dzOvi0Aa2EA - Huberman labs - a really short video on how your brain needs to reorient itself after loss.

Kids:

"The widow's survival guide" - https://www.amazon.com/Widows-Survival-Guide-Living-Children... - "you're not alone in the mess" kind of book. Again, audible version available.

Kids' books (mine was 3.5 so YMMV):

Reread over and over:

  - The invisible string - https://www.amazon.com/gp/product/031648623X
  - Fix-it man - https://www.amazon.com/gp/product/1925335348
  - Missing mummy - https://www.amazon.com/gp/product/0230749518
  - The sad dragon - https://www.amazon.com/gp/product/1948040999
  - Something very sad happened - https://www.amazon.com/gp/product/1433822660

Read once or twice:

  - Love is forever - https://www.amazon.com/gp/product/0615884059
  - I'll See You In The Moon - https://www.amazon.com/gp/product/1989123309
  - My heart will stay - https://www.amazon.com/gp/product/0578794578
  - The heart and the bottle - https://www.amazon.com/gp/product/0399254528
  - Always remember - https://www.amazon.com/gp/product/0399168095
  - The garden of lost balls - https://www.amazon.com/gp/product/B0BLQW27XX
  - Gone but never forgotten - https://www.amazon.com/gp/product/B09SNY9VF3

Therapy and meds:

Actually, therapy and meds before, if not already. Anticipatory grief is a thing and processing it can make later days a bit easier. Anti anxiety meds (NDRI) can create "inoculation" effect to some extent. SSRIs probably as well. Understand depression, the symptoms, the issues. Educate family and friends. Establish rapport with a therapist.

Friends and community:

Expect loss of friends. It's terrible but it happens a lot. Extremely common that friends will silently disappear after a few days or weeks. Not even just joint friends. People are awkward around grief. Community, however, does seem to work well. Rely on them. Don't say no to food offers, it helps. Doordash! Don't be shy about it, it's fine to eat junk food. Don't drink though and don't get high, it deepens and prolongs the grief symptoms.

Calls:

Don't forget your family or close friends. I've had daily calls with my sister. It helped a ton. Scheduled daily calls.

Forgot to add: Journaling helped me a lot. I favored writing this as "letters" / "texts" to my wife. As if she's here, just telling her about my day, feelings, emotions, what our kid did, what happened around us, family and friends. Venting, crying, blaming, being frustrated, being happy, being proud. All goes in there.

I think I will be forwarding funny animal videos to Jake on instagram for all time but the idea of them being delivered to no one is this weird minor detail that is just so hard.

That happened to me too. Then I switched writing in "notes" and eventually switched to https://dayone.me/ which has a webapp as well as mobile app, so it's easy for me to write on any device. It was less disheartening not to see that "delivered, not read" on messages.

Thanks for sharing, bironran, I ordered the irreverant guidebook, and appreciate the suggestion. I'm avoiding all medications because I'm 7 months pregnant, but have Tetris available to try and prevent PTSD https://www.ox.ac.uk/news/2017-03-28-tetris-used-prevent-pos...

Be well. I'm so glad you are with people that care.

Good wishes to you and your friends and family.

Farewell Jake.

Goodbye, Jake.

Sad reminder that we are all here for a limited time and we don't really know how long that will be.

Good luck mate. Do not go gentle into that good night, until all is done.

Sleep well.

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