My 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/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.