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What are the questions to which you want these honest answers?

Do you think your husband's wish "not to know" is an active choice, or just his line of least resistance?

You've put me in mind of a time when a friend told me his workplace had asked him to sign a "get well soon" card for a colleague, who was going on leave for cancer treatment. "Not a chance!" he said, and he mimed writing across a corner of the page. I hope that isn't really what he'd written in it (though I wouldn't quite put it past him, alas).

There is positive mental attitude, and then there is false hope, or even nonsensical pretence of hope that leads to exploitation and insults to the intelligence.

On the other hand, there is truthfulness and then there is calling a spade a damn shovel.

There is considerate reticence, and then there is withholding essential information that a person needs. E.g. these medications may severely affect your ability to operate machinery. Including cars.

You know your husband best, you know where the right point of balance is for him so that he is told what he needs to know, without being forced to hear what he genuinely (at the moment anyway) does not want to know. Isn't there anyone on his healthcare team you can trust to state the facts without crushing all hope?
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tryingmybest8 Dec 2022
This exactly! There is a line which he cannot cross, but because the healthcare team won’t discuss without him, I don’t get the answers I need for the future. Radiation and chemo has affected his brain, not to mention the tumors growing. The only side effects they mentioned were nausea and vomiting. He had none of those. But ended up in the hospital with pneumonia and sepsis. Luckily I got him there in time but it was pure luck! NowI know what I’m looking for in infections. But what about his spinal tumors? Is he just going to become paralyzed? Or his brain tumors? Will he start having seizures? I know he needs hope, but I am in this alone every day and if they gave hime less than a tear to live, they must know where this is going.
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If you are on his HIPPA form or are his medical POA, you can send questions through your husbands patient portal, and they are "supposed" to respond within 48 hours.
I am all for having hope, but there are just times when we all have to face reality.
I'm sorry this is yours. God bless you both.
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tryingmybest8 Dec 2022
Thank you for reminding me. I need him to sign the paperwork.
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Get the HIPAA form for Medical Representative from his oncologist's office and have your husband write in your name as his MR then return the form to the clinic so they have it on file.

This will allow you to discuss his medical information with his doctor without your husband having to be present. You will also be able to give info to his doctor that the team will be able to act upon.

You do not need to wait for anyone to tell your husband not to drive. My uncle killed his own wife in an accident because his children didn't have the courage to just end it. She was a 2-time cancer survivor. It also injured people in the other car. Do whatever it takes to prevent him from driving. I don't know how a doctor can write a note when the doctor never sees him driving. This is why you may need to anonymously report him online to the DMV and they can act to end his privilege. Or, you disable or remove the car. You keep all sets of keys, etc.

I'm so sorry for your husband's diagnosis and the stress and chaos it has thrown you into. Be sure to speak to his doctor about depression, as they may be able to do something about this as well.
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tryingmybest8 Dec 2022
Thank you for your reply. After I spoke to the NP, they convinced him he shouldn’t drive. I will have him sign the paperwork so I can communicate more effectively. We’ve both talked to the doctor about inability to sleep and depression. They keep telling us to think about other things. To put it out of our minds!? Seems cruel.
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Make an appointment to talk to the doctor alone, I had the Durable Power of Attorney for my cousin so I did that on a regular basis.

As for the driving, get a letter from the doctor as well, stating that he should not be driving. Then report it to the DMV.

You need to start thinking out of the box for him and your own safety.

Health Care professionals always want to play make believe when it comes to the final solution, death.

My father had small cell carcinoma of the lungs, he had over 100 tumors in his lungs, so I tell the doctor point blank I want the truth no "let's pretend" so he says "Well, with chemo he could live 6 months or longer, after all there are miracles". Me: "Oh please from the looks of the xrays he won't be here in a week, stop all treatments". He died 2 days later.
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tryingmybest8 Dec 2022
I’m sorry you had to fight to get answers. I feel this way also. He says he has no choice but to try to fight the cancer, but so far the treatment hasn’t worked and he’s continuing on. I don’t have a durable poa, so I’m going to have to get that asap. I hope he agrees.
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Ask for an appointment for yourself and leave hubbie at home, with a sitter if necessary. Tell him you have a doctor's appointment for yourself if you must (not really a lie). And do a little bit of online research before you go so you can ask direct questions instead of the vague "what's his prognosis" so they are less able to evade. So, "if X is true, then what does that mean today, what happens next" kind of thing.
My SIL used to be a cancer clinic social worker and often had to sit with people to explain what the doctors had told them, so that's another possibility.
And do you have hospice on board? The nurses there should be able to interpret his chart and are more apt to have the kind of answers you need.

Have you ever heard of the book Being Mortal by Atul Gawande? It's a very good read that discusses the conflict between end of life care and modern medicine.
https://www.agingcare.com/products/being-mortal-medicine-and-what-matters-in-the-end-433866.htm
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tryingmybest8 Dec 2022
Thank you for your reply. When he was first diagnosed with this, the doctor offered palliative care. I mentioned hospice, the doctor said yes, and my husband immediately said no. I’m not ready for that. That was six weeks ago. I do have access to a social worker who told me I’m dealing with anticipatory grief. Offered to teach me deep breathing exercises, and thought control. Nowhere on the internet is the cold, hard truth about dying of cancer that is everywhere. And I can’t believe the bills are up to $245,000 already, in six weeks! Cancer is a big money business. I hope my insurance holds up.
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