End of life issues with liver cancer

• By GaryE
• Reply 3313856
• August 23, 2012 at 1:53 am
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I lost my Gary tuesday afternoon to sclc mets. I guess everyone goes differently. Just love him , hold him, reaasure him your there always and if you get frustrated over things try brush off because it really doesn't atter in the scheme of things. I woke up and all I can think of him Gary please come back , please come home Where are you my Gary? I love you and your never coming home and I am scared and broken now . My heart. head hurts so bad. Just love him while he's breathing and do whatever hwe wants to do.

• By TGirl320
• Reply 3314085
• August 23, 2012 at 7:26 am
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Hi, so sorry that you are going through this. I know first hand how hard it is. Tomorrow it will be a year since I lost my husband. Your husband is still here and if he still wants to fight and he's not ready to give up support him. Talk to the doctor and tell him that he isn't ready to quit. Ask is there anything else to try. While there is life there is hope.
Additionally, don't let anthing go unsaid between you. Make sure that he know how much you love him and how much he means to you.
I wish you the best and I will be praying for you.
Be strong and try to take care of yourself too.
Tonya

• By PandD
• Reply 3314133
• August 23, 2012 at 7:48 am
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That is exactly what's killing my husband.
He didn't have radiation, though. At the halfway scan, the doctors found the carboplatin got rid of the tumors in his lungs but the lesions in his liver were bigger. (It was the liver cancer that caused the initial symptoms that sent us to the doctor. It was only later that we realized it had metastaticized from the lungs.)
So, he switched to topotecan. Two treatments later, his blood work was indicating it wasn't working.
Since then, he's been too weak or his blood counts too dangerous for any more chemo.
Now, he just sleeps. Yesterday, we were told no more fluids because it "interferes in the dying process."
That was hard to hear and hard to agree to but it seems we had no choice.
Now, I just sit and watch him breathe reminiscent of the way I watched my first baby breathe after he was born -- rooting for him to breathe, breathe, breathe.
From all I've read and heard from the doctors, there is nothing left to do. It's a terrible feeling of helplessness.
A nurse friend helped me find one thing to be thankful for -- he is in no pain. The nurse told me about some cancer victims (bone especially) who he has watched do nothing but moan in pain the last days of their lives.
I'm so sorry you guys (we all) have to go through this.
I think everyone has to decide for themselves how much they want to fight; how much they are willing to endure for no guarantee.
My husband, like yours, would never willingly say I'm done. He would always want to keep trying, keep fighting -- sometimes I fear for me more than for himself.
It has only been since he is not longer able to make his own decisions that the choice has been made for him. It's actually been made for me, too. And frankly, I don't know if that makes me angry or it's a relief.

• By Barbiej
• Reply 3314863
• August 23, 2012 at 11:55 am
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Thank you all so much for your replies. PandD could your husband have gone on palliative care instead of hospice. They told me that with palliative care they could give them fluids and take blood at home and then he could still go to hosp for chemo. He is a fighter but last night after taking a round of the taxol on Mon says he don't think he will live for the next round next week. He is so strong, but so weak, does that make sense. He wants not to leave his family so he tries to be so strong but now he is getting a little emotional and I can see the tears. We always need them to help us make decisions and I know what you are saying about us having to help make them now. Maybe it is God's way of trying to prepare us for what is ahead. I have an ins. agency but my daughter works there too so I am doing my work at home for that. But we also have a Southwest Shop at home which I still am operating in evenings and on week-ends. But when I go in that shop as he is a silversmith, and he is not there with me I can't hardly take it. Or when I go in the garage and see all of his tools and his truck, our bike, and the memories, I just break down. But he can't see me. I think we are just being prepared for the next step. We lost our son 5 yrs ago to the nsclc and he had to come live with us the last few months so I could take care of him. And the way he died in our arms so quick, he was mobile before this and could get around and was still eating. But with him too the chemos stopped working. He wouldn't let us get hospice as he said he wasn't dying. But when he did die so quick, and the er took him to hosp so quick, when we came back home and his walker was still there, all I could think of was I'm not done talking to him yet, but that is the end. It is a completely empty feeling. Then it hits they are really gone. So I know what to prepare for as I'm seeing all of this before me again. Somehow I don't know how we did get through it, but we had each other. This will be different I know without him. And after the onc told him on Monday 6 mo to a year, and he still wanted to try, I think now he is giving up a little. Before I don't think he realized how serious it is. So much to think about and then afterwards we will probably think of a hundred things we should have asked.

• By Barbiej
• Reply 3315454
• August 23, 2012 at 3:26 pm
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What do you say when they start to want to give up. Last night he said he probably wouldn't be around for the next chemo on Monday. Then this morn he didn't want to take his pills said he wouldn't need them, and for today is only taking pain pills. Doesn't want to go and take fluids tomm as last week when he did we left the hosp getting fluids and had to go right back to er as he thought he was dying because of the pain in his chest which the er doc said was inflammation where the ribs fasten to the sternum because of the tumors. He was pretty upbeat about it all until the onc said possibly 6 mo more or less. He is a fighter and I have to keep the fight in him or what else is there, just lay there and do nothing?

• By GaryE
• Reply 3317558
• August 24, 2012 at 10:57 am
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this is jeanne. i did all you all are doing and it wasnt until day he died he gave up. he knew but wouldnt quit until i said its ok gary i will be ok. im not i lied it hurts more than anything. this whole house world is him. dont get tired just talk listen dont worry about anything but talking and kising and holding and hugging because soon enough that moment will come when if your as blessed as i was he was holding me tight with his head on my chest and with grace, courage, dignity and peace went to his final sleep. no struglle his heart just slowly stopped and my gary was gone. dont give up one moment or memory. grab everyone you can because if you have 1/4 of what gary n i had your hearts are going to shatter. dont beat yourself up just dont let a minute pass just go with what they want so that when their moment comes they can go like my gary in peace... love you all and dont wish any of u to feel what i am but if you do, pray thats all will help is faith.

• By Chebird
• Reply 3317664 · In reply to 3317558 by GaryE
• August 24, 2012 at 11:33 am
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Dear Jeanne,

What great advise you gave. This is very kind of you considering you are facing the darkest time of your life.

Thank you and God bless you.

Holly

• By Barbiej
• Reply 3318344 · In reply to 3317558 by GaryE
• August 24, 2012 at 3:54 pm
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Jeanne,
I know we all have to go through this and I'm dreading it so much. Thanks for all your good advice and it sounds like you and Gary had a very good relationship. Keep thinking about all your good memories and that is what will keep you going. When we lost our son 5 yrs ago with lung cancer I made a little memorial garden with all the plants that could be planted outside and put his picture out there. It is so peaceful just going out to that place for a while. Barb

• By Barbiej
• Reply 3318354
• August 24, 2012 at 3:58 pm
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Husband is on methadone and ativan and for breakthrough pain he has dilaudid. But I don't know if it is the pain pills and anxiety pills or is it the cancer that makes them act like they do. Their memory is bad, and sometimes they get defiant and don't believe you. It is so heartbreaking sometimes but I keep telling myself it is just the disease. Am I correct? Or is it the meds.?

• By GaryE
• Reply 3319192 · In reply to 3318354 by Barbiej
• August 24, 2012 at 10:12 pm
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to Barbiej , its all of it the cancer , the fear. the meds, the chemo. all of it. They are facing mortality and the fear we cant iagine and the drugs they poisen with. just go with it . do the best you can try not get frustrated with the memory thing. My gary died tuesday and tommorow I have his funeral. Just dont bothwer with the little things. if it help them be;ieve their right let them love say everything you want. I thought i talked until blue in face saiud everytything but there thousands things going thru my mind wondering if i said it . questioning, doubting myslef, i got aggrivated few times when would eat and yelled a few. i was so scared i hate myslef for it now although i know he didnt i do so please just try make evert thought word action good and find some memories now and pictures and voicemail because oh my if he leaves the pain is intolerable. jeanne

• By Lady650
• Reply 3320231
• August 25, 2012 at 11:22 am
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As I sit here reading all the stories, my 84-year old Mother is behind me sleeping in her recliner. She has extensive sclc which has spread all over her body, and was told one month ago that she might have 6 months with no treatment, or up to a year with treatment. She chose no treatment (wanted some quality to the life she had left). She has always been such a strong woman, this is just breaking my heart. I just try to keep her comfortable, talk about the good times, help as much as I can and pray. Hugs to all who are suffering....

• By tyler2
• Reply 3324241
• August 27, 2012 at 12:47 am
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I don't know if this is appropriate in his situation, but I wonder if he'd benefit from trying IV Vit. C. Frankly I don't understand why it's not given to everyone in palliative care.

My husband has NSCLC plus bile duct cancer (cholangiocarcinoma) with mets to liver and abdominal area. He's also just beginning to recover from cachexia (cancer wasting), and is still very weak. He wasn't eating solid food and pushed himself to walk for 5 minutes around the inside of the house. He was told he was almost too weak to get chemo.

For anyone who wants a better quality of life, I would recommend hi doses of Vitamin C by injection. My husband has just started getting them (from his oncologist!) right after chemo and it has made a big difference for him. He said he felt normal for the first time in months!

For him it increased his appetite (and food didn't taste chalky), his energy, and his outlook, plus it reduced some of the pain and chemo side-effects. However he didn't get any beneficial reaction until the dose was increased to 50gms. Therefore it would seem to be good for palliative care, for those avoiding chemo, as well as for those on most chemos.

After his first 50gram dose (given right after chemo by a new oncologist in NY) he walked 6 blocks to a restaurant, ate a full meal, and walked 6 blocks back to the hotel! I was amazed.

Unfortunately it only stays in your system for c. 48 hours, so the recommendation is for 2-3x per week. I've found several integrative or wellness medical practices in my area who offer it.

A lot of the research on it in this country has been done by the Riordan Center, affiliated with the U. of Kansas. They cite some research papers on their website.

Apparently at certain levels it may even reduce tumors, but I'm just happy with the "side-effects".

• By Barbiej
• Reply 3325696 · In reply to 3324241 by tyler2
• August 27, 2012 at 3:50 pm
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PandD
Am just wondering how your day is going? I am worried about you, as we are all going through some of the same issues