My husband has stage 4 cancer everywhere. Recently diagnosed, I am not getting any picture of what to expect. My husband doesn’t want to know. I know his spinal tumors can cause paralysis and his brain tumors can affect everything. He’s got liver tumors, bone tumors, and esophageal tumors. The doctors evade my questions and I don’t want to hurt my husband’s feelings. They keep talking to him as if there’s a cure, even though he’s on palliative care. I don’t think he knows what that means! One NP told me I have to give him hope. Then a week later looked at me incredulously when I said he was driving and almost got us killed. No one told him he shouldn’t drive. Radiation and chemo has made talking to him even more difficult. Not to mention the drugs he his taking.

How can I get someone to give me honest answers when he isn’t right there listening?

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What a shame these people -- and especially your husband! -- are willing to put you in a financial hole because they won't tell him the truth.

Granted, I'm no doctor, but it seems to me that chemo and radiation is a futile exercise at this point, and he should be getting his head in a place where he isn't in denial. If ever there was a case for hospice, he's it.

I was with my dad when he received his terminal cancer diagnosis, and his doctor sent him off for an (unnecessary) x-ray so he could talk to me. He'd told my dad he could have as much as a year, but when Dad was gone, he told me he had maybe a month.

I think my dad knew that he didn't have anywhere near a year, and after a week or so of feeling low, he got on the phone and started calling his friends to tell them how much he valued their friendship. He also turned over all decisionmaking and caregiving related to my mother to me, which took a huge load off his shoulders.

We signed him up for hospice after about three weeks, because he was having no treatment except for draining the fluid out of his abdomen. He and I had many heavy talks about life and death, and he planned his own funeral. He made the most of every minute left to him and died with full and complete peace.

I wish the same peace to you and your husband eventually, and remember, he has the right to say no to further treatment. I know he wants the treatment now, but eventually he may not and you'll need to be his advocate.
Helpful Answer (7)
Reply to MJ1929
tryingmybest8 Dec 15, 2022
Thank you for sharing your story. I do wish I could talk openly with my husband and share what little time we have left together. I hope my husband finds peace.
Doctors vary. When it comes to difficult conversations I'd say they vary too. Some will use a blunt matter of fact speech, full of medical terms, or statistics. Some may be more vague or even evade.

Maybe this Doctor is 'reading the room' & the 'vibe' from your Husband is that he is not ready to hear any dire news? I can understand this, but it leaves a gaping hole for you. I would imagine at the very least a brochure for more information could be slid over to you. I send my sincere kind thoughts to you & hope you can get the knowledge you need from other sources.

I've met people who quite openly discuss their prognosis. Wish to discuss the practical details or wish to talk about spiritual issues - they wish to talk. This can be a blessing for some family members but a burden others cannot bear.

Other folk just don't want to think or discuss anything at all.

There are certainly no rules. No right way or wrong way.

I read a beautiful story by a woman who's husband had terminal cancer. She wrote their goal was to live 'as normal as possible, for as long as possible'. Then, to adjust, in steps, to each 'new normal'. I liked this. Not big false hopes, but hope was imbeded in small ways in the little details of daily life. I hope it will be a nice sunny day to get out out to the garden.. I hope the coffee shop has our favorite treat today.. I hope we can get to the beach next week. Small things.

I think if hope & some ignorance is helping your husband, let him have it. He will let you know if or when he changes his mind.

For you Trying, of you are connected with a palliation or hospice team, have a quiet word to one of the senior nurses. Hopefully they can arrange time to call you. Take that call & walk outside or go sit in the car for privacy.

If this is not available, look for a cancer helpline (although this will be more general information, not specific to your husband). Another option would be to chat to your own doctor privately & ask about a counselling service.

Support for you is so important as you support your husband.

Take care.
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Reply to Beatty

TMB8, I hope you won't be blocked from accessing this site -

- Macmillan are our go-to people for practical advice. I expect there is a direct US equivalent, it's just I don't know what it's called. If you look up the cancer type and add "living with" you might find caregivers' information.
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Reply to Countrymouse
tryingmybest8 Dec 15, 2022
Thank you! I am able to access the sight. There are real people and their experiences on there. I don’t know how we got to this point without any knowledge of it. It’s shocking.
I would look at the doctors right in front of your husband at the next visit and say you both need an honest idea of what to expect and what your husband should and should not be doing going forward. This isn’t the time for anything other than honesty. It’s not taking away hope, it’s learning to deal with what’s coming. Your husband may not be able to process the information and that’s okay, but you will, and it’s you that needs it the most. I’m sorry you’re both dealing with this. Please be sure all needed documents are in place. I wish you both peace
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Reply to Daughterof1930

Tryingmybest, I am so sorry for your situation.

May The Lord give you strength, courage, wisdom and comfort during this difficult time.

I would set up his portal, if it's not already done, and ask the doctor to help you understand the prognosis.

My sister had stage 4 cancer throughout her body, opted for no treatment and passed away in 10 weeks. The oncologist had given her 7-8 weeks with treatment.

She didn't want to hear anything about her situation, period, end of discussion, if you brought up her dying. My heart goes out to you, it's hard when you want to say goodbye and share things and it is met with a full STOP!

Great big warm hug! Your little dog is precious.
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Reply to Isthisrealyreal
tryingmybest8 Dec 19, 2022
I’m so sorry you lost your sister to such a vicious disease. My heart goes out to you.
I have a dumb question...
Now please forgive me I am a PROPONANT of Hospice. My Husband received excellent care and I would not have been able to do what I did if it were not for Hospice.
Given your husbands diagnosis is there a reason the doctors have not referred him to Hospice?
I know he is on Palliative Care but I think Hospice would give you far more support and the staff would talk to you.
I am also a believer that the Quality of the life you have is more important than the Quantity. If the radiation and chemo are doing him more harm than good in relation to the quality of his life is it worth it?
I realize that many people, maybe even doctors, think Hospice is "only" for the last 6 months or fewer. But many have been on Hospice much longer. Hospice is not just for the patient but the family.
((hugs)) for both of you....
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Reply to Grandma1954
jonessu Dec 22, 2022
Yes, get a hospice referral. Palliative care is designed to control the symptoms related to curative treatment for which your husband probably has many. In hospice, he would need to stop all curative treatment and would be transferred to a hospice physician and care team to support him and you. He would also be eligible for home visits. So sorry you are going through this.
I believe in hope.
There is hope for a peaceful passing.
There is hope for a death that won’t haunt or bankrupt those left behind.
In this for-profit environment of health care, it can be very challenging to say no to futile testing and treatments when the end is so obviously near. Hospice will have your back.
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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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Reply to MeDolly
tryingmybest8 Dec 15, 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.
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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Reply to Countrymouse
tryingmybest8 Dec 15, 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.
My sister passed away in 1996 from an aggressive form of breast cancer. Her doctors did not sugar coat her diagnosis. She was put on an experimental drug that the other woman had made 3 yrs. I was told by one of my Doctors, at the time, that Doctors have to give you the worse case scenario because of malpractice.

Yes, if your willing the doctors will keep pushing that chemo. Its a money maker. Sorry, I see no miracle here. The cancer is all through ur husbands body especially the brain.

I would wonder if him talking to a therapist would help him understand that he has to get his life in order. There should be some kind of support for you too.

If you can get that Medical POA, I would. Your husband is going to become incompetent. He will not be able to make informed decisions. You will need to make them for him. Also, make sure its Immediate this way you don't need a doctor signing off concerning competency.

If you can make an appointment with his doctor, be aware that Medicare will not pay for it. Your husband must be with u for that. I would say to the Doctor to stop giving your husband false hope. He needs to know that no amount of chemo is going to cure him. Give him more time, maybe but only to be made sick from the chemo. He needs to face his immortality. He needs to realize that this chemo is just not going to work at this point. I really think the Doctor is being cruel giving him false hope. He should be spending his final days with you in your home being cared for by Hospice.

I am so sorry you are going thru this and no one is considering your feelings in all this. IMO, as the wife your questions should be answered. Doesn't matter about HIPPA or Medical POA. Your his wife and what happens to him effects your future.
Helpful Answer (5)
Reply to JoAnn29

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.
Helpful Answer (4)
Reply to Geaton777
tryingmybest8 Dec 15, 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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