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?
I sent a message directly to his doctor about where this journey will take us. Their reply was they couldn’t give me a prognosis. Every patient is different and they couldn’t see how long he will last. But I learned last week that they intend to keep doing the chemo cycles until he can’t take it anymore. He didn’t argue with them. He’s got to follow doctors orders. He has started seeing a therapist during treatment (per my request). She is trying to get him to understand how ill he is, but he doesn’t want to hear it. We had a meeting with his doctor also, she actually told him he was a very sick man. So he says he wants physical therapy! When we got home he was angry that she told him that. How does he not know? He is in complete denial.
His treatment is palliative, but he doesn’t want to accept that. When he was diagnosed in October, the doctor said hospice was an option. But he has a definite opinion of hospice and thinks it means an early death. That hospice means giving up. Here we are nearly three months later and he wants physical therapy. His denial is heartbreaking.
I still don’t know how long he will last. I’m hoping the physical therapy people will help him understand. He’s very weak and shaky. Has fallen a couple times, which I believe is some type of brain seizure. They are doing another brain mri in a couple weeks. The stress is unbelievable. I’m going to stay in the background and follow his lead. I’m not going to be the one to take away his hope! It’s the least I can do for him.
I find it interesting in other countries they wouldn’t give him anything but hospice. Cancer is big business in the USA.
I pray that he comes to some sort of peace with this.
It is good you are going to follow his lead. Miracles do happen and there are people that beat cancer.
If you have a faith community, start a prayer chain, get the elders to lay hands on your husband and pray.
Get them to hold you up in prayer, it truly helps.
May The Lord God Almighty grant your husband healing and give you both strength, peace and wisdom for this journey, whatever it holds.
At least the portal is helping you to understand what is really going on.
One thing we did with my sister was to contact and plan surprise visits from long lost friends. It was truly a spirit lifter and blessing for her. Maybe you can plan some visits with people your husband laughed with, it would be good for you too.
I know this is not easy, be sure and find ways to care for you. Your life is and will be hugely impacted, it is important to kinda plan how you are going to move forward. I know that's hard to contemplate but, having a plan in place for support for yourself will help you get through this.
Great big warm hug!
You need to be prepared for care your husband may need.
Ask if you can make a private appointment just for yourself to review the present condition. Sounds like he should not be driving at all.
You are not violating HIPAA if you are participating in his healthcare--the guidelines are here:
https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_ffg.pdf
Good luck.
Anyway, I think maybe the doctors and staff expect me to look at the online records to see the big picture. When we have an in person visit, they paint a rosy picture to lift his spirits. I can’t think of any other reason but if it were me, I’d want the cold hard truth.
Thanks for listening ❤️
To me it appears that you follow whatever he says, do this, don't do that, do you ever do what you think is best for you? To make your life better, less stressful?
He not mentally or physically stable, might be time for you stand up and be counted, you have rights too.
Just my 2 cents, my husband had cancer as well, we worked together as a team, there was no dictator.
Does he understand that?
I believe that chemo to keep a patient comfortable IS allowed on Hospice. However, you won't know unless you call a couple of hospice companies and ask.
Anyway, he got worse and was admitted while I was out of town. He was transferred to an outstanding Oncology Hospital. His scans showed it had spread everywhere. They gave him 6 months, he lived 6 weeks.
You just don’t know. Even the doctor’s opinion is a best guess and they are optimistic. You should plan on this progressing rapidly. Down the road, you will be happy if it does.
Stay strong, take care of yourself, not just him. I wish I could give a huge hug.
" family meeting" with the doctors and, address your concerns; if your husband is cognitively capable or not to ask and address questions, he of course should be included; if not you certainly have the right to request a meeting with his care team regardless. You say that he is on" palliative care", ; this is different from " hospice" although some hospice care is palliative. You may want to speak with a " hospice" of your choice and explain your husband's situation and yours . Hospice will be glad to give you information and if you want him admitted to " hospice", you have the right to ask his Physician for an order for this. If your husband is in " hospice care", they will be able to answer a lot of your questions and be supportive for your husband and you. Hospice is about living in the midst of a life limiting illness, not about dying. Yes hope is always important and hospice team can help you , your husband and family with appropriate hope.
If you have the written authority, call the Dr's office and speak to his nurse, ask for a private call so you are informed.
As a retired RN having worked in Hospice, I know that statistically, MDs over-prognosticate by a factor of 10. Meaning that a person may have 2 months but the MD sees 20 months and has an overt faith in their ability to 'heal' their patients. I worked with one MD who abhorred his patients once in Hospice, as if they had failed him in his care of them, he was awful for us RNs to work with.
His Dr should be willingly open about speaking with you about your DH's condition and prognosis and hopefully, she/he's one of the realistic ones...
Wishing you strength in what is ahead, it's very hard, everything you're experiencing with your beloved.
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And: document all that this MD is doing / not doing. Perhaps it is time to report him to the authorities. Get everything in writing.
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....
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.
Read advice from our forum team to get ideas.
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.
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.
It is a shame that he does not want to be as informed as possible but there are "Ostridge" people that prefer to keep their heads down and there are "prairie dogs" that keep looking up and are curious as to what is going on.
Doctors in school are taught to "cure" they do not know how to accept that for some things Palliative or Hospice is a better more humane option.
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.
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.
https://www.macmillan.org.uk/cancer-information-and-support
- 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.
Doctors are notoriously evasive about giving a time frame, because you really can't predict these things. (I have a lady on hospice who was "actively dying" a month ago. Yesterday, she talked to her son on the phone and chatted with me. She's doing fine. She's just old.)
Get a hospice consultation. You can get one without your husband's permission. THAT doctor will be more honest about his prognosis and quality of life. You don't have choose hospice in the end, but at least you'll have more facts.
next visit , call the nurse and let her know what you would like discussed at the visit.