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Re: Cea on the rise

Posted: Tue Feb 25, 2020 12:15 pm
by Mohrfamily
The FUDR isn't helping the liver everything seems connected right the new doctor checked everything on the scan. FUDR just isn't effecting us like we hoped. He estimates that 1/3 of the liver is still good and agrees FOLFIRI is where to head next.

Re: Cea on the rise

Posted: Tue Feb 25, 2020 12:19 pm
by Mohrfamily
Mohrfamily wrote:The FUDR isn't helping the liver everything seems connected right the new doctor checked everything on the scan. FUDR just isn't effecting us like we hoped. He estimates that 1/3 of the liver is still good and agrees FOLFIRI is where to head next.


He mentioned the fluid might be stemming from the amount of tumor growth happening. He said it accounts for his fatigue most likely also.

Re: Cea on the rise

Posted: Tue Feb 25, 2020 5:36 pm
by Mohrfamily
Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight

Re: Cea on the rise

Posted: Tue Feb 25, 2020 5:44 pm
by claudine
Wait, what??? What about Folfiri? This is so very sudden! I sent you a PM too...

Re: Cea on the rise

Posted: Tue Feb 25, 2020 5:51 pm
by Mohrfamily
I don't know how to answer that. Hes doing folfiri tomorrow that's all I can wrap my mind around.

Re: Cea on the rise

Posted: Tue Feb 25, 2020 5:54 pm
by claudine
And that's the thing to do - one step at a time! My husband is also very much a pessimist and whenever there's a setback, it sends him spiraling down... Until a new plan is put into place, and then he rallies back up. Hopefully your husband will too. I hope you can lose yourself in your son's music program tonight XXXXX

Re: Cea on the rise

Posted: Tue Feb 25, 2020 6:22 pm
by juliej
Mohrfamily wrote:Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. PM me. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight

It's well documented that patients with positive attitudes are better able to cope with disease and treatment-related problems. His attitude is one of resignedness to his "fate" and in the long run that's his choice. When the cancer is growing, you're in pain, and chemo is causing its own brand of misery, resignation can be very seductive. You are tired, scared, and sick, and the chemicals coursing through your veins also affect your emotions. I don't blame him, even though I know of others who would love to be in his place since he still has options and they don't.

At the risk of sounding judgemental though, I think you are being subjected to emotional blackmail which is making things worse for you both. This choice is his and you are in no way to blame for whatever decision he makes.

I think you need to have a long, honest conversation with him about what he wants instead of getting your info from his Facebook page. Does he want to stop treatment and go into palliative care, despite the fact that he hasn't run out of options yet (including clinical trials)? Would he like to speak with a counselor about that decision to make sure he understands what that entails?

And, frankly, you need support too. This is emotionally draining for you. You can only do so much for him. Don't make yourself ill because of this. Your son needs his mum. I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

Juliej

Re: Cea on the rise

Posted: Tue Feb 25, 2020 6:37 pm
by stu
Thinking about you both . Lots of good advice and I am holding out for chemo to start working again on his tumours .
Maybe a bit of distance between this hurdle and a few chemos under his belt he will feel a bit more reassured .
Take care ,
Court

Re: Cea on the rise

Posted: Tue Feb 25, 2020 7:47 pm
by Mohrfamily
juliej wrote:
Mohrfamily wrote:Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. PM me. thank u.

My husband's Facebook post today, and just like that my world crashes all around me and our son has a music program for 2nd grade tonight

It's well documented that patients with positive attitudes are better able to cope with disease and treatment-related problems. His attitude is one of resignedness to his "fate" and in the long run that's his choice. When the cancer is growing, you're in pain, and chemo is causing its own brand of misery, resignation can be very seductive. You are tired, scared, and sick, and the chemicals coursing through your veins also affect your emotions. I don't blame him, even though I know of others who would love to be in his place since he still has options and they don't.

At the risk of sounding judgemental though, I think you are being subjected to emotional blackmail which is making things worse for you both. This choice is his and you are in no way to blame for whatever decision he makes.

I think you need to have a long, honest conversation with him about what he wants instead of getting your info from his Facebook page. Does he want to stop treatment and go into palliative care, despite the fact that he hasn't run out of options yet (including clinical trials)? Would he like to speak with a counselor about that decision to make sure he understands what that entails?

And, frankly, you need support too. This is emotionally draining for you. You can only do so much for him. Don't make yourself ill because of this. Your son needs his mum. I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

Juliej


Our little 5 year old girl watched me cry I'm ashamed to say but she wouldn't leave my side. And our son did great in his play, had me laughing with his unscheduled air guitar.

Re: Cea on the rise

Posted: Wed Feb 26, 2020 8:03 am
by JJH
juliej wrote:..And, frankly, you need support too. This is emotionally draining for you...I hope you can get the support (counseling, family, close friends) that you need to get through this. That is key.

Juliej

14 Ways Caregivers Can Care for Themselves
https://health.usnews.com/health-news/patient-advice/slideshows/14-ways-caregivers-can-care-for-themselves

Re: Cea on the rise

Posted: Wed Feb 26, 2020 9:51 am
by boxhill
I completely agree with Juliej.

I am worried about you and your children, and your husband.

I think that many of us have gone through times when the thought of just giving up crosses our minds. I was on a drug last year that honestly was beginning to make me feel that death could be the best option. I was in so much pain last fall that I just couldn't imagine living like that for much longer.

I hope that you and he can find a way out of this emotional pit. Has he had therapy? Any discussion of an antidepressant?

Posting a message if impending doom on Facebook somewhat out of the blue...it sounds like he is in crisis.

Re: Cea on the rise

Posted: Wed Feb 26, 2020 3:56 pm
by Mohrfamily
He claims he was overcome by what he heard. Has since taken the post down and kinda apologized but I've made it clear that text message apologies won't do. I haven't really talked to him yet today, saving it for face to face confrontation.

Re: Cea on the rise

Posted: Wed Feb 26, 2020 4:12 pm
by claudine
Has he received his Folfiri treatment yet? How did that go?

Re: Cea on the rise

Posted: Wed Feb 26, 2020 6:25 pm
by Mohrfamily
He had it, mentioned that he was almost life lighted to a bigger facility I've been to stubborn to get details yet.

Re: Cea on the rise

Posted: Wed Feb 26, 2020 6:38 pm
by radnyc
This is why I refused to let my significant other or family get too involved in my treatment, I felt that as the person undergoing the rigors of cancer I was not going to dump on them more than they already have to deal with. I did my own research, found the medical facility and treatment that I wanted on my own, went through all of the chemo sessions on my own except for the first one. At that one I let my parents come, but after seeing their pained expressions while I was being treated I said NEVER AGAIN. This is how I feel, not judging. I chose to own my cancer not share it so much.