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My SO has liver cancer. I won't pretend to know how he feels. I won't pretend to understand, because I don't think a person can if they haven't "been there", so this is MY vent. I have so many things going on in my head and heart, one after another. Sometimes all at once.
When he told me, I told him to go to one of the best hospitals in this region of the country. He decided to stay with the hospital and doctor closest to home. I want and need to hear that they are cutting it out, burning it off or stomping on it. It took a couple months for them to do one procedure and give him pain meds. That's it. Not aggressive, IMHO.
I finally got him to agree to a second opinion. He said, "If it will make you happy." Well, yes, it would. Why? Because I want him around as long as possible. If the best hospital can give him a couple extra years, then why not? When I finally got the insurance info, and arranged for an appointment that would normally be a three-month wait into a two-week wait, he reneged. I can only hope he changes his mind.
I feel as though I'm watching him die. He weighs 122 pounds. I realize that I can't make him do what he doesn't want to do. It's his life. But if he wants to cut it short, I'm not excited about watching.
He is stubborn, and the type of person who will not give much time or attention to an issue until it's biting him in the butt, but this isn't a situation where one can make up for lost time. He actually told me how stupid it is to consider driving 45 minutes to a doctor/hospital each time they want to do something to him. I was so hurt that I didn't tell him that there is a satellite office closer to home.
I know that he has a lot on his mind. I am helping where I can, dealing with the appointments, tests, paperwork, etc. But I also have feelings. I feel as though cutting our time together short really isn't a big deal to him. I feel as though I'm fighting this and he isn't. It's as if he will just go along with whatever this local hospital says, never mind all of the screw-ups they have presented already.
Does he have family members or children or close friends or a religious leader that can help you encourage him to fight harder? I always believe that a second opinion, by a doctor that you (not your doctor) select, is extremely valuable.
It must be so aggravating and hurtful to be shut out like that.
I only had one thought, based on people I have known. Is it possible he resents you for being healthy and is determined not to listen to what you say because of that?
You lead off with "I won't pretend to know how he feels. I won't pretend to understand..." Is that because he's said you don't know how he feels? If he's angry, he's certainly entitled to be but it's so hard on loved ones.
He is 5 years older than me. He is 60. He has a daughter who tries to stay in touch with him. Granted I don't know how their conversations have gone, but I know that he doesn't talk to her much. I think he doesn't want to be asked how he is doing. I also think he doesn't want to tell her that he's okay when he isn't.
No, he has never said that I don't understand. I started my post by saying, "I won't pretend . . ." because I really don't know how he feels. I can only imagine how I would feel. I can only assume in a world where one shouldn't do that.
It is frustrating, saddening, maddening, scary, and exhausting. His health care system only makes it worse by dragging their feet and making billing errors.
I truly don't know how someone that has to do this on their own can stay sane. The system doesn't make it smooth or easy when folks are in pain and have bills, family and LIFE on their mind.
Sometimes, folks just give up....there's nothing you can do about that, really....it is HIS life...
Just stay supportive. I know you want him around, as you said, as long as possible...but quality of life is more important than quantity, IMO. It's like keeping your ailing pet around when they're miserable....you do that for YOU...not for the pet.
It's a terrible situation...and you need to prepare for something less than you want, I think. I feel for you!
If the end is certain, and the prognosis is bleak, he might not want to extend his life with harsh treatments and extreme discomfort. You want him with you, but perhaps he feels extended treatment is too costly a price to pay.
I do think he needs to advocate for himself regarding pain.
I can understand why his behaviors are so upsetting to you. But I have a hunch that it's taking all he has to deal with his own feelings, and that he's decided, in the sake of conservation, to focus on getting through this and his own feelings. My formerly very loving and generous grandmother got this way when her cancer prognosis became terminal and she accepted that fact. She was depressed, lethargic, withdrawn, and bitter toward people, even her darling great grandkids, who were healthy and alive and probably going to stay that way long after she was gone.
It was hard on our family, but working with hospice helped us through this time -and more importantly, it helped her.
Liver cancer has a grim prognosis, unfortunately, and a five year survival rate of only about 15 percent. Your SO probably knows this and doesn't want to put himself or others through what he probably perceives as a useless, expensive, painful struggle.
Have you discussed hospice care with him or with any of his care providers? Is it an option at this point?
I hate to sound so pessimistic but I'm trying to be realistic. It's his body, his life, his death, his choice. It's not like he's refusing to submit to treatment for something that he's probably going to survive with treatment. He may be looking at this as struggling for nothing but pain and suffering. I can't say that I blame him.
Still - it's got to be incredibly tough for you to witness and to live with. I'm so sorry you're going through this.
Please don't take this personally though - as my grandmother's care team told us, "It's not about you." Death is inevitable for all of us, but still, it's intensely personal when a person is going through it. There's a lot to process, and many people just don't feel comfortable discussing it with even their closest loved ones. His reaction isn't strange or inappropriate considering the circumstances.
Once again, I'm very sorry you and your SO are facing this tough time.
My SO has liver cancer. I won't pretend to know how he feels. I won't pretend to understand, because I don't think a person can if they haven't "been there", so this is MY vent. I have so many things going on in my head and heart, one after another. Sometimes all at once.
When he told me, I told him to go to one of the best hospitals in this region of the country. He decided to stay with the hospital and doctor closest to home. I want and need to hear that they are cutting it out, burning it off or stomping on it. It took a couple months for them to do one procedure and give him pain meds. That's it. Not aggressive, IMHO.
I finally got him to agree to a second opinion. He said, "If it will make you happy." Well, yes, it would. Why? Because I want him around as long as possible. If the best hospital can give him a couple extra years, then why not? When I finally got the insurance info, and arranged for an appointment that would normally be a three-month wait into a two-week wait, he reneged. I can only hope he changes his mind.
I feel as though I'm watching him die. He weighs 122 pounds. I realize that I can't make him do what he doesn't want to do. It's his life. But if he wants to cut it short, I'm not excited about watching.
He is stubborn, and the type of person who will not give much time or attention to an issue until it's biting him in the butt, but this isn't a situation where one can make up for lost time. He actually told me how stupid it is to consider driving 45 minutes to a doctor/hospital each time they want to do something to him. I was so hurt that I didn't tell him that there is a satellite office closer to home.
I know that he has a lot on his mind. I am helping where I can, dealing with the appointments, tests, paperwork, etc. But I also have feelings. I feel as though cutting our time together short really isn't a big deal to him. I feel as though I'm fighting this and he isn't. It's as if he will just go along with whatever this local hospital says, never mind all of the screw-ups they have presented already.
I feel . . . helpless.
Thanks for reading.
'morph
Sorry to hear about your SO....The best hospital in the world might TRY to give him a "couple extra years"....but there's no guarantee....I'm sure He wants to be around as long as possible...just as you wish.
I think it's unfair of you to say that "he wants to cut it short".....and the pressure he must be feeling from you to "do it your way", can't be good for him.
You're right when you say "It's his life"....it is...you aught not to fight him on that.....just respect him, and love him for as long as he has left.
It's very sad that you decided that he is "cutting our time together short"......how can you know that?
He would probably feel very hurt that you feel that way.
How can you know that what he is/isn't doing may actually prolong his life. Maybe he's seen or knows about the terrible terrible side effects of some cancer treatments and wants QUALITY of life rather than a little bit more quantity.
You probably are "watching him die"....but you can do it lovingly and with compassion,..
Accept what is...don't feel hurt...be supportive to this man...enjoy every last minute you have with him....don't waste that time arguing and disagreeing with him...what for????
And above all else....keep him in his home...that would be the greatest thing of all that you could do for him...
I can understand how you feel. My dad was diagnosed with lung cancer and he continued to smoke. It would make me so mad and I would voice my opinion harshly to him like that was going to help anything. But I started thinking about it in a different way. He's 76 years old and the cancer isn't going anywhere so he might as well enjoy it with the time he has left.
Sometimes the patient knows when to let things go and let it play out like it's going to anyway. The important thing is to support whatever they wish and I know it's hard to do.
My dad told me one day "Son, I've had a good life. I've had some good times and if I died tomorrow, that would be ok". I can only hope one day I can say the same.
I wrote how I FEEL. Life isn't fair and no one ever told me that it is. I don't expect it to be.
I don't argue about his care. I told him how I feel and why. I simply would like him to get a second opinion. I am the very last person that wants to see him hurt and suffering for a longer period of time.
I understand what is being said about letting him live his life. I told him right from the beginning that it is HIS life and only he can decide how to live it.
I spend as much time with him as I can, but still give him a lot of alone time. The hours we spend together are irreplaceable.
Thanks for your help.
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