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Oh My, Where Do I Begin?

Chippidy
Posts: 8
Joined: Dec 2011

This is my first time posting. We moved into a new home, and two weeks later, my Fiance was diagnosed with Stage IV stomach cancer. I'm feeling so overwhelmed. He is having such a hard time. Had chemo for the first time last Thursday. Nausea and vomitting intensified five fold and he had to be admitted into the hospital. None of the drugs worked that they sent us home with. He hasn't eaten in SEVEN DAYS. Today, he had a feeding tube installed in his abdomen, and of course he is in a great deal of pain. They had to actually do surgery, and couldn't simply slide it down because there was so much blockage.

He was so happy earlier today. I knew it was the drugs. Then they took the strong stuff away, and now he's on morphine. I wish they'd give him the happy drug again. I saw a the person that I once knew, but now he's back to being abrupt, mean, and distant. And I'm not complaining, I understand -- he's in pain and feeling sick to his stomach. I feel so awful that he is so miserable,and that his body is tortured with sickness and medical intervention.

He is also in denial. I asked him if he'd told his mother about what we were told about the prognosis -- incurable -- terminal. He told me never to mention that to him again. His family is two hours away. I can understand the drama that he is trying to avoid, and I believe that it is his choice. I want to be respectful, but at the same time I don't like being deceitful. His sister has called me a couple of times. She says things like -- Well -- I think it's in stage 1, because he doesn't have it in the bones or blood. My response was "I'm not sure about the stage, but the cancer has not spread to the bones or blood." However, the family wants to be in denial too. They all sat and heard the initial reports, and somehow he convinced them that they really didn't hear that there were tumors in his lungs and lympnodes. He later told his sister that it was curable.

I just go along with what he wants, because I don't feel it's my place to tell his family. He has a right to his privacy. I also sympathize with him, because his sisters and mother can be very controlling. I've known him for four years, and they have made him jump through some incredible hoops and do some stressful things all as a payback for taking care of his three kids. And for once, this part of his life he gets to control.

I'm so darn exhausted. I have to juggle being a mother to my young son, and a job, and a caretaker. Today I felt my forhead tensing up -- involuntarily. I didn't move it, but I could feel it. The sensation scared me. I decided not to do a late night shift at the hospital tonight. But of course, I'm still plaqued with worry and stress. And I guess that's why I'm here.

Thanks for letting me vent.

jimwins's picture
jimwins
Posts: 2077
Joined: Aug 2011

I'm so sorry you have to be here. You'll find wonderfully supportive
and non-judegemental folks on this site and many with similar experience
to yours.

It would help if you would post more details on the "about me" page so
others with similar experience can reference that quickly. There is also
a stomach cancer board you and your husband could use also. It's important
to know the cancer type and sub-type and where it was primarily located, etc.
You are definitely in the right place for caregivers though.

Denial is very common when diagnosed with cancer and is part of the process
of coping. Hopefully your husband will move on from that stage.
As a caregiver, you can't possibly do everything and you have to take care of
yourself as well. Most here would suggest you get all the help you can
get to ease the burden and stress on you.

Also, did you get a second opinion on your husband's condition?

I'm sure others will chime in here soon. I just happened to be up
extra early this morning. I wish you guys well on this difficult journey.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺
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ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

We are a haggard bunch around here, but we truly understand what you are going through. You came to the right place to vent, and we welcome you. You seem to be in more control than you think because you are making what sounds like good decisions. It's his life, his cancer and you have to respect what he wants to tell his family about it. However, you are dealing with this just like he is. You, as the caregiver, are involved in all aspects of this horrid disease. You must give it time, let him decide when and what he wants to tell his family, but you don't have to put yourself in a position of fibbing to them. Tell him what they are asking and ask him what he wants you to say and if it's not the truth then tell him so.

But, be very patient with him. This is a new normal that he has not had nearly enough time to adjust to. And you too, for that matter. There are so many phases you will go through and you are strong enough to do it.

Hang in there, come here to vent or just update us. Let this be your sounding board. It will relieve a lot of pressure.

Hugs,
Deb

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

So sorry you have had to seek out this site and at the same time it's very good you found us. We are here for you. To help you express yourself, in any way you need to, when this ugly disease and all that goes with it begins to get the best of you. Again, WELCOME!

Chippidy
Posts: 8
Joined: Dec 2011

Thanks guys for reading and responding to my last post.

We are doing the feeding tube, slowly. He's had some discomfort as it's going through the low intenstines. I decided that his family should at least come and see him. I called his mother and told her I wanted someone to come from the family to be supportive. She's the matriarch -- very controlling. She asked me point blank if he was dying? I avoided the question. I told her that for now they are doing what they can to get his nutrition up for more chemo. He seems depressed, and I don't want him to give up. I asked his sister to come up -- she lives an hour away. I had the feeling that she really didn't want to deal with it. I'm told that she can't handle much. She asked why I was calling her, and I told her because she was the closest, and he needs her support. The other two sibblings are coming this weekend.

I don't know how I will handle more questions about the prognosis. Maybe they will probe the doctors for more information while they are here and piece it together. My fear is that he will just never say anything, and they will ask me why I didn't tell them. I feel so overburdened by it all.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I dont really know why I came to this part of this site tonight but I wanted to respond to you. My caregiving is over now, I lost my sister in Oct. She had brain cancer. She didnt want our family to know about her cancer. My Dad, myself and my children and hers were the only ones to know. I couldnt go to any family gathering because it was all over my face, I didnt answer phone calls either. She wanted to protect everyone.Six weeks before she passed away a nurse at the hospital let the cat out of the bag. Im a nurse and so is one of my cousins. so the nurse told my cousin she sees me all the time with my sister. Well my sister had to tell everyone. They were heart broken, she was so sick by that point she didnt want anyone to see her. I held this all in for 8 months. Everyone loves her so much and this caused so much pain. Family should be able to be there for each other.Im grateful for every minute I had with my sister, I was able to tell her how inportant she was to me. My life is forever changed. I feel really bad for the rest of my family for not being able to do that. Wow if this was kept from me, boy I dont know...He has to be the one to tell, just saying this really ripped my family to pieces...

Chippidy
Posts: 8
Joined: Dec 2011

You came to this part, because God lead you to me ;-). I'm so glad you wrote. Yes, my fear is that the family will feel so robbed of the time they might have spent had they known the status of the cancer. I've decided that the best I can do is offer them to come to my home anytime they want. Today, his sister came to the hospital. I could tell he was really annoyed with me, because I told her to come. It was really too much for him, and sometimes I think I'm pretty much all he can handle. I called her because I sensed he was slipping into a depression. I wanted to keep his spirits up, so I reached out to the family. The other sister (who is a real control freak) and brother are coming over the weekend. I know he gets tired, and I don't want to over exert him. I did warn the brother today, that less time is best. Anyway, that's all that I know to do to balance things out until he tells them. I really appreciate your opinion that I'm doing the right thing. I just don't feel it's my place and I really want to respect his wishes.

Hugs.

puma
Posts: 2
Joined: Dec 2011

Sorry of your expernce, how has it been for you, and did she have a lot of anger issues

just_joan11
Posts: 4
Joined: Dec 2011

Hello Chippidy,

Welcome. I've just begun the journey with my mother in this experience. She's got lung Cancer and the outcome is not good.

So much to carry on those shoulders. Hang in there.

I am new here as well. I do feel better when I write here though. They really do understand here and it's comforting.

It is hard when you've been in health care settings and seen the things that you've seen and know the things that you know. I had a classmate tell me that I need to get the nurse out of my head and focus on being the daughter for my mother. Yet it's hard.

I wish you well and you'll be in my thoughts and prayers.

puma
Posts: 2
Joined: Dec 2011

I am new also, hope to get some feedback also. My wife has brain cancer GBM stage 4 and was told 3 months it is now almost 3 years. Goes to show ? I had a life, then there was cancer and I had a mission, now she has anger and I don't know what to do. Guess what i am saying it is always a new reality, and one day at a time. Hope like you I can make some contacts and help myself and others. Was in the Navy -- you expand your chance of living by helping others. Keep reaching.
PUMA

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