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Husband stage IVb Colon cancer with Mets 
Started by tuna
10 Nov 2014, 5:43 AM

So many questions so many emotions very few answers...
My husband was diagnosed in April with Colon cancer (returning) and mets to kidney, liver, peritoneum and lymph nodes. He took this diagnosis in stride and has refused chemo/radiation.
He is tired, thin and lately his skin is yellowing. But then sometimes his skin color will be normal again. Everyday he tells me he just wants this to be over. He asks me when he will die. I gently tell him no one knows this answer.
The situation is terminal. Obviously. His pain is being managed with Morphine.
 I am his only caregiver, that I dont mind.  We have been married for 21 years. To care for him is an honor. 
But, I feel horrible. Its painful to face this. I feel guilty that I, like him, want this to be over. Everyday I wake up and see him struggling. I just want the struggle to be over. And I feel guilty for this.  
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Reply by KathCull_admin
10 Nov 2014, 2:30 PM

Hello Tuna
Welcome to the forum - you will find it's a safe place to talk. Members of our community  will understand how you feel and support you  
Reading your post I am struck by the strength both you and your husband have in facing and living with the diagnosis and prognosis.  Your caring and support are also very evident. I wonder if those  two might be tied together.  You know what is coming and it must be so hard to see this man you have been married to for 21 years failing.

Guilt always hangs around too I find -trying to make a hard  time harder. Plus it takes so much energy. 

You say you are the only caregiver Tuna, do you have family or friends around to support you? 
Katherine 
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Reply by tuna
10 Nov 2014, 5:24 PM

Thank you for your kind reply. 
I peronally have no family  save for a daughter who is working on gaining sobriety. She's pretty fragile, so I don't ask much of her. Her sobriety during this crises is a gift in itself.
my husbands family are all having their individual reactions to this situation. My husbands sister had breast cancer two years ago,  and she received chemo and radiation. So when my husband decided to not go that route the familiy felt confused, sort of leave us on our own. I understand they are grieving too. My mother in law freaked out at me last week. I am soft spoken, and she is hard of hearing. So, she felt I was whispering and she said I was being rude. She screamed at me and said some very abusive things. I left to get her flowers to try to calm her down, and she continued to verbally abuse me when I brought the flowers back. All of this happened in front of my dear husband. This just seems to be a very long long nightmare. 
We are registered with Hospice.
 
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Reply by jorola
10 Nov 2014, 6:25 PM

I am so sorry Tuna. It is very hard to watch the one you love die from a horrible disease alone yet have to do it alone.

I have found this place a very safe and comforting place to turn to with many caring people. They have given me strength when I needed it the most.

I hope we can do the same for you.

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Reply by tuna
10 Nov 2014, 6:38 PM

Thank you for your kind reply. 
 
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Reply by marstin
10 Nov 2014, 11:44 PM

Hi Tuna,

This is one of the toughest roads to travel and filled with so many emotions. I think for most of us who are or have been caregivers, the guilt is one of the hardest things to deal with. It's not that you want to lose the person you love, it's that the stress is exhausting and watching them suffer is incredibly painful for both. We are after all just human beings.

I lost my husband Len to bladder cancer just over 2 years ago. It was a very tough 6 months from beginning to end. While the reality of them being terminal is being forced upon you, it's still hard to deal with what that means. You watch them struggle and as much as you want them to stay, you want the pain to be over for both of you. Although they are the ones with the disease, it's your mind that has to grapple with all of the stages that you have to watch them go through. We get very tired and that's when the guilt really kicks in because we don't know how much more we can take. Please be gentle with yourself. You are doing the best that you can under the circumstances and I'm sure that your husband appreciates it greatly.

As Katherine and Jorola said, you have come to the right place for support. I found this site after my loss and found so many people reaching out to help me get through this. Although we are all at different stages of the journey, on here you will never feel alone. Please keep sharing.

Hugs,
Tracie

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Reply by tuna
11 Nov 2014, 1:26 AM

Tracie I am so sorry for your loss. You are an amazing person to be reaching out to others in their time of sorrow.  Thank you so very much for your understanding. You are very kind to have replied. 
Its true, this journey is very tiring. My husband has developed insomnia this past month. No amount of sleeping pills seems to help.  He doesn't sleep, so I don't sleep. And you are right, I just don't know how much I can take. If I think about doing this for another 6 months, its overwhelming. Yet, saying this seems so mean and selfish. Then I feel like a horrible person. Then the guilt. 
This is not something one can talk about with friends or family. Thank you for message 
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Reply by marstin
12 Nov 2014, 4:30 PM

Hi Tuna,

What I've found on this journey is to try not to look too far ahead. This is one of the most difficult things to do but is important to your state of mind. Within weeks of losing Len, I lost my Mom also. My entire support system was gone in the blink of an eye. I had nowhere to turn. I had one brother who was incapable of offering any support and a niece that was there for a short time but couldn't handle my pain. I also had a stepdaughter that was struggling with addiction problems and things were not good between us. That is when I found this site. Knowing that you are not alone in this is an important thing. To be able to share your innermost thoughts and fears without judgement and with people who actually get it, makes a huge difference.

I think for many of us on here, we know that we have the experience that just might make a difference to someone just beginning this journey and it helps us heal. When I responded to you the other day, it was Len's birthday and I was struggling with it and yet it brought me peace of mind to message you. We are a virtual family here and although we wouldn't have chosen to meet this way, we have a bond that many others wouldn't understand.

Do you work outside of the home Tuna? Are you able to rest when your husband does? As caregivers we tend to push ourselves to the limit. We focus so much on taking care of our loved ones that we forget to take care of ourselves. As difficult as it is, you have to care for yourself too. Are you able to take time away at all? This is really important even if it's just going for a short walk to clear your head.

You are not a horrible person for the thoughts you have. You are just a human being doing the best that you can under the circumstances.

Hugs,
Tracie
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Reply by KathCull_admin
14 Nov 2014, 2:26 PM

Hi Tuna
I was just thinking about you and wondering how the rest of your week has been. Also thought you might be interested in a thread started by Jorola (whom you have already met) called Feeling burnt out - just soooooooo tired  

On that same theme, Caring for Yourself is an article that you may find helpful.


I admire you for going that extra step for your mother-in-law when you already have so much on your plate. Is this new behaviour for her in your relationship?


Has Hospice been in contact with you about resources they could offer you and your husband?


Katherine

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Reply by BevB
16 Nov 2014, 5:11 PM

Hi Tuna

I am so sorry you & your husband are going through this. My heart goes out to you.

I lost my husband of 23 yrs in Feb. He had the same cancer as your husband.
I too felt guilty for wishing it were over. It wasn't for me but for him. The pain & suffering he went through near the end tore my heart out. I couldn't do anything for him.

There are many special people here that have experience & give sage advice. You have found a good support group.



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