Starting Hospice

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.

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.

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/

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.

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?

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.

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.

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

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!

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.

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.

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.