Dear Cindy,

Everyone has given you so much valuable advice, I don't know if my two cents worth will help, but here goes anyway...when my husband Ron went through the radiation, he pulled back and distanced himself too, which at first hurt me a lot. But because of the help I got on this forumn, I was able to put myself in his shoes, and understand what he was going through mentally and emotionally. He needed all of his energy to fight this disease, that was his #1 focus, and everything else took the back burner. He knew I was there for him, even if I couldn't do anything, but just being there, helped. And I turned to my friends, and they helped me when I needed to vent.

I want you to know that there is light at the end of the tunnel. My husband finished treatment 4 months ago, and things are getting better every day. We are closer than ever, and because of this "cancer thing", we truly cherish every moment that we have together. We take more time to smell the roses because there is no guarantee that any of us will be here tomorrow anyway.
Hang in there Cindy, I believe you can make it through this. As Gary said, just stay in the now and take it one day at a time.

Take care,

Shelley

I tried to talk to him today and I asked him about my sleeping on the couch. He said that he understood and that it was ok with him. I tried to get him to open up and tell me how he feels and he just won't. He lets the time pass until we move onto something else and then he just doesn't have to talk about it.

He won't tell me what his wishes are if he doesn't make it. He is not fighting but rather just giving in. I try to stay positive everyday and I encourage by telling him that it won't be much longer and that this is all temporary. We had a survivor friend come by to see him yesterday and he really didn't want to see anyone. He just stayes in the bedroom and sleeps.

I cannot get him to eat. He says that he has no pain but when I try to get him to drink a protien drink or something he just won't.

It has been 2 weeks since he has drunk any water and the only reason that he is still living at this point is because of the IV fluids that I give him everyday.

The doctor says that if he doesn't get the tube soon he will wither away. We have an appointment with the gastro doc on wed.

He is not fighting and that is what is making me crazy. He did tell me that if this is going to have lasting side effects then he didn't think there was much to live for. I cannot tell you how much that breaks my heart.

I have tried to get him to talk to someone and he is on antidepressants but he keeps everything inside and only during moments when he is not completely lucid does he let things slip out about how he feels. When I ask more about it he just shuts down.

I love this man more than words can ever say. I have from the first hug and it has grown only stronger over the years. It is eating me up inside because right now we are like strangers in the same house. He is living in his own dimension and I am in mine. I want to hug him and tell him that everything is going to be ok. I want to make things better for him. But he is constantly making it harder on himself.

He hugs me from time to time and it feels good. We used to read each others thoughts and even think of the same things at the same times. Now I have no idea what he is thinking but my gut is telling me that it is not good.

When he hugs me he says I love you and it sounds like someone saying goodbye. I am not ready for him to leave. We have too many things that we are supposed to do together and I just wish he would stand up and tell me that he will fight this thing no matter how bad it gets. I am fighting every minute of every day and I need him to fight too.

I tell him this and he just looks at me and smiles a little and then he rolls over to go to sleep. I watch him when he is sleeping and I feel so helpless. His lumps on his neck have not changed and he knows it. I see him rubbing his neck sometimes and he never says a word but I know that he is feeling like none of this torture is doing any good.

Before the treatments started, he had decided that he wouldn't do them. He was just going to wait until the cancer took him. I was devestated and I kept on him until he finally gave in.

When we got to the hospital that first time to start the treatments, he told me he was only doing this for me. At first I was just glad because at least he was doing it but now I worry that that reason is not enough and that he is giving into the pain and the process.

I so wish that he was like many of you. That he would be proactive in his treatments, demand the best from the doctors, be honest about how he feels, and fight for all its worth.

That is what I pray for everyday.

Cindy

Cindy
There is another saying in AA... KEEP COMING. I am so glad you continue to openly discuss your frustration here particularly if you are not confiding in friends or family.

Guess what? CANCER SUCKS. I said it everyday, several times a day for at least six months, sometimes to total strangers, now I am down to about once or twice a week. Harry seems terribly afraid,and exhausted. Is he getting good information about his condition,treatment and prognosis from his medical team? If he won't ask the questions then you should ask them.

I firmly believed Bob needed antidepressants but he wouldn't take them. He didn't give the impression he was out to beat this thing either. Just like you I kept thinking fight fight fight while Bob seemed to be more passive and plodded along through treatment. I was devestated when he refered to himself as deadman walking. It terrified me. Now five months post treatment he is still plodding through healing. The positive changes in him are subtle. He has had no new life affirming attitude change. I kept expecting him to fight like hell and then embrace life. Didn't happen, but he's still here.

I believe many of the people on this board are unique in thier aggressive approach to beating this disease. I think just the fact that they are on this board shows they are a special kind of proactive person. Bob certainly didn't want to discuss or participate here. As long as Harry is accepting treatment to the extent his Doctors order it he is fighting, maybe not as actively as you would like. Hopefully after the feeding tube is in he'll get some strength. Keep reminding him that you are a team. That you are in this together and how very much you and your children need him regardless of how passive his response may be.

When he is at his worst of the blues it's ok to let him be. Take a walk. Throw a ball around or play a game with your kids. Have a private cry and don't take it personally. Then at the next opportunity, it might not be until the next day, tell him that you love him and that you truly are there to help. When he beats you down. Take a little time but pick yourself up again. I promise you will survive this whatever the outcome. Like Gary said take it one day at time. Sorry to be so long winded but you have stirred all those feelings I had not so long ago. I hope this is encouraging. Trust me if I could do this...YOU CAN DO THIS!!!
Keep the Faith Denise

Cindy,

Everyone around here knows how shy I can be but I want to speak up a bit, if you don't mind. First, stop beating up yourself so bad. What you are dealing with and what Harry is dealing with are things that most of us don't plan on facing and certainly don't know how to until we are in the thick of it. Take each issue as it comes and try hard to pick the one that is impacting your life the worst at the time and stay with it until you feel you have it somewhat under control. Being overwhelmed, unfortunately comes with the territory and even resolving one will give a sense of accomplishment.

Second, stop taking responsibility for Harry's beliefs and attitude. Do not underestimate his resolve and try to put him on a scale with "many of you" as you say it. While it appears we are all so similar, we are each unique as human beings and each and every one of us has worked through this at our own pace and comfort level, even though it appears so similar. The things you mention are something many if not all of us have faced. While it may appear to you that Harry is not expressing his feelings, I read your posts and I see tremendous fear, sadness at the differences in life as it exists now, anquish at how he will be after treatment, etc. These are all very strong expressions of feelings and often all we need is a sounding board and you are doing a great job at that.

Last, stop trying to fit all of this in a nice, tidy little box with a bow. It is a horrible disease and the process is anything but desirable. Reassure him (and yourself) that many have traveled this bumpy road ahead and both of you can as well. Look at life for what you have now and hold on to hope that there is much more than what it seems. Someone on the forum had a quote that was something like "it is in the darkest times that we often see the light". Let go of how life used to be, embrace it for all it is now and look forward to every day in the future when you get to water the flowers instead of pushing them up from six feet under. Find the glimmer of light, hope and happiness in every moment or you will lose track of it.

Ed

Thank You Ed, I needed that last paragraph! I had reconstructive surgery on my tongue and flap last Tuesday, stitches will be in for another two weeks. Your words hit home for me today. God Bless, Carol