Good luck to you both!! Pain in the ass but reasons for hope
First of all, I just want to add my supportive vibes to hubs and hopes that all will go well. Treatments are indeed improving year by year, and outcomes ever better.
But the point about hospitalization can be crucial, even if being confined to a hospital is a PITA. You get instant access to everything. “Wait times” are a non-issue when you’re a triaged in-patient.
Oh, maybe i was unclear. He’s going to be transferred to a big downtown hospital to initiate treatment either way. The question is whether to stay in this system or shift to a different hospital system.
Ah, I probably just misunderstood.
@puzzlegal So sorry y’all are having to go through this. The positive stories in this thread are very encouraging.
My late husband was hospitalized many times during our 10-year marriage and this is very good advice:
Don’t hesitate to speak up or ask questions about what’s going on. Keep a daily log book or diary (digital or analog), because after a while there will just be too many details for you to remember. With names of the people who are working with your husband.
If you wonder about something or something doesn’t look right, absolutely say something. Don’t just assume that everybody is doing what they’re supposed to do. Ninety-nine times out of 100 they will be, but that one time could make all the difference.
All the best to both of you.
I’m so sorry to hear about this. My best wishes to your husband and you.
Very wise words. The key role here is described by these two words: “patient advocate”. Someone who looks after the patient’s best interests with well-informed knowledge and, if necessary, pushes back against formulaic bullshit.
I can think of few people better equipped to be a loving, wise, careful patient advocate that you, @puzzlegal. Your husband is very fortunate to have you in his corner and looking after his interests.
My main concern is what others have expressed: Make sure to take good care of yourself. Accept help when it is offered, if it will genuinely help you. You have a large and varied circle of family, friends and supporters. It will help their hearts – and yours, too – if you can let them take some of the load. As a self-reliant person, I found this difficult. But when I was able to let go and accept offered assistance, I never regretted it.
Hang in there.
@puzzlegal if he is hospitalized and if you can be there for that, stay in his room with him all day, and even all night if you can, consider doing so. It helps to have an advocate there with him. Of course, take frequent breaks and get out to get some fresh air.
My wife has been in hospitals quite a bit lately, and it helps to be there to clarify communications with the hospital staff. Not just with doctors but also with nurses and helpers who do smaller tasks here and there.
When my H was in the hospital (which was A LOT) I stayed there all day every day. I didn’t stay at night because I had lots of animals at home. I was a freelancer so at times I could work on my laptop in his room.
And yeah, take care of yourself, but you decide what that means.
People often wanted me to come out to lunch with them or something, but I really wanted to be there in the room with him eating lunch that I had brought from the hospital cafeteria. So sue me. That’s what I wanted. I didn’t want the distraction. But then I did go home every night. We lived in the country, so it was about an hour away. Difficult times…
Love this and wholeheartedly agree. Best of luck to you both!
Sigh…unfortunately I am also a member of this club. We see our family Dr tomorrow and I’m nearly certain she wants hospice in our home. (Sigh…I don’t really…but, I don’t know, it could be maybe a good thing?) The dementia keeps him unaware of the prostate cancer, Drs and hospice will remind him of the cancer. Experience tells me this will cause him to suddenly ‘feel it all’, in a way the dementia seems to protect him from. And he will directly become much sicker, as a result. Only to recover after a couple of days as he again ‘forgets’ about the cancer. Pretty sure they won’t believe that, but it’s true, I’ve seen it play out, exactly that way twice.
Sigh…
This is a key point too. In my experience, hospitals run on a ticket based system - orders get placed into the system, and someone else picks up the order and does it. There is little pro-active communication between the person placing the order and the person handling it, so things like urgency and even details get lost. Keeping on top of that and flagging someone down to force communication can really help.
One little touch my sister is good at - she would occasionally bring in a fruit platter or something like that for the nurses, as a thank you. Just a nice little thing to let them know you appreciate the work they are putting in for your husband.
I just saw this, I hope you get some good news and it is all treatable.
I went forward with my travel plans when waiting on my diagnosis, if possible I would try to go forward with your Japan trip.
My actually treatments start tomorrow, in theory they should only leave me tired, hopefully that is true. Hopefully, whatever he has can be handled and handled in a fairly swift manner.
I’m SO sorry, hon!! Those that love you will flock around you, and that love will give you strength. I ardently wish I could make it better, but you do have my thoughts and prayers! 
When my mother was dying of covid, we got home hospice care. It was great. They did bring in a hospital bed for her (which was incredibly helpful for my mom, but might upset your husband.) But otherwise it was mostly home visits similar to visits she had when she broke her hip and then had a big blood clot. The house still felt like her house, and not like a hospital.
My thoughts exactly. Both the need to gently ride herd on the tickets, and to deliver kindness in whatever form to the front line workers. Hint: cookies & other sweets are not really what they want; they get too much of that stuff already. Even kind words and encouragement are invaluable to the folks in the trenches. Whose jobs are being rapidly enshittified by corporate healthcare.
Once you’re starting hospice, the amount of doctors and visits and whatnot decline a bunch. So unless I’m misunderstanding the scenario, your husband will get a big wakeup call as the change occurs, forget about it 2 days later, and then he’ll be cruising along oblivious until the end comes.
If the alternatives are moving him to an institutional hospice, or ongoing in-or out-patient treatments while living at home, both of those alternatives seem more, not less, distressing to him, at least when viewed in toto.
I’m sorry you’re both dealing with this overflowing bucket of misery.
I’m not certain he’ll survive the next round, is the issue. The last round was so sudden and severe, I contacted his family, thinking the end was close.
It’s just the two of us in our little home and garden, he’s in decline but he’s happy. I feel certain we’re capable of it being just the two of us, here in this sacred place, together, for the last act.
(I have a boatload of caregiving experience. We bought this house when his Mom had a stroke that left her bedridden. We cared for her, here, in our home, for six years. She passed quietly here, in her own bed and where she was loved, with those she loved. That meant a lot to us then.)
Peacefully, in his own home, in his own bed, with his wife at his side.
That’s what I want for him/us.
My late wife was in hospice status only for a few days. But there was no disruption to our at-home routines. No hospital bed, no busybody nurses, none of that. Other than one home visit the first day by the hospice MD to certify that she was terminal and he was taking over primary care / attending duties from her prior care team, they pretty much left us alone. A nurse was available on call to stop by, which we used a couple times for minor issues. And they had somebody available for the final vigil so I could get some sleep.
You might want to ask some questions about what options your hospice provider offers. They probably don’t have to take over your home and his life.