I have a question and I hope that no one thinks I am a jerk. I was wondering about something that is bothering me.

Last week I got sick with a terrible sinus infection. It was pretty bad and when I brought Harry home from the hospital, the doctor told me to sleep elsewhere because I could make him sick.

So I moved to my couch, which is not terribly uncomfortable, but I have been on antibiotics now for 4 days and I don't want to go sleep in our bed.

I am not entirely certain why except that I don't want to bother him. He is restless at night and I am afraid to sleep next to him because I don't want to hurt him or disturb him.

I got a baby monitor and I can hear him downstairs now so I go upstairs a lot to check on him.

Is this unusual? Should I feel bad because I don't want to sleep in our bed?

Should I feel bad? Because I do.

Thanks,
Cindy

Not unusual at all - my wife moved into the spare bedroom for a time so she could get enough rest. With a compromised immune system, you are very thoughtful not to expose him.

Cindy,

I don't think it is that unusual. Like Gary said, you are being considerate in not wanting to disturb Harry. And you also need a good night's sleep so you can be strong enough to continue to care for your family.

And now I will probably sound like a jerk, but this may also be a way for you to distance yourself a little in preparation for the possibility that Harry doesn't beat this. I am not suggesting that Harry won't survive, but I know it has been on your mind a lot and subconsciously perhaps you feel a need to distance yourself a little bit physically, just in case.

With all you have to deal with, if sleeping on the couch works, do it and don't feel bad about it. You have to do what works for you so you can get through this.

Rosie

Thanks Rosie and Gary,

You said something that I have been afraid to think but that I am feeling and that is the distancing. I don't think that I have ever felt so lonely in my life. We used to talk and our lives were always wound together through work and play. Now I can't talk to my best friend because he is the one who is sick and we are distant for many reasons at this time. It makes me very sad and it provokes a lot of memories back to when things were good.

I feel ashamed though, for separating myself like this. He doesn't ask about my not sleeping with him but I think that he wonders or maybe he even knows. It is hard to say what he is thinking. I used to know but not anymore.

I am not coping very well with this cancer thing. I try but I know that I am not. My friends all think that I am doing well but they don't know and if they could see how really bad I am at this they might change their thoughts.

I feel most of the time like I am on autopilot. Sometimes it feels like this isn't really happening. Like I am outside of all of this just watching it go by.

I hope we can make it through this. It is what I hope for every day, but if he doesn't......

Cindy

Dear Cindy,
This is such a hard time for both of you. I, too, felt the 'autopilot' thing, and couldn't (still can't)understand why everyone has commented on how wonderful and strong and brave I have been through all this. I certainly didn't (and still don't) feel any of those things. We do what we have to do to get through - there is no bravery or heroism involved.

I hope you will take the time to sit with your Harry and let him know how much you love him, and how you will fight this thing with him. If he is anything at all like my Tom, he will need that reassurance from you. Think how alone and lonely HE must be feeling. There were many, many nights that I got no sleep because I was so aware of Tom's discomfort and pure misery. I knew, however, that moving to another room would have devastated him. He often offered to move himself, but I also knew that if I agreed to that, he'd be hurt. We both resorted to sleeping aids to help us along. The hardest thing for us now is the lack of physical intimacy. It is a huge wound to us.....I HATE the PEG because it interferes with simple cuddling. I HATE the lack of energy he suffers, as well as the lack of physical strength. I never say anything about this to anyone for fear they will not understand. Tom and I, however, have talked about it......and we are both longing for the day when things will be 'right' for us again.
We never know the time we have left with those we love. I don't know that distancing yourself from Harry is the right thing to do right now, but I am speaking only from my perspective - and from my view of marriage. How will you feel if things don't come out 'right?' How many hours of being with your husband will you have missed?
It is so very hard to talk about the 'what ifs' when an 'if' is a real possibility. We have had to force ourselves to address the hard questions of finances, his business, our possessions, etc....not easy, but necessary. My humble advice would be to get cozy on the sofa and let the feelings and fears pour out. Good, cleansing tears never hurt...
I hope I didn't come across as 'preachy,' as I didn't mean to be.
I will be thinking about you, and praying for peace in your heart.
Nicki

Cindy,
my wife had a nervous breakdown in my post Tx phase, she didn't think I was going to make it. She suffers from PTSD and chronic depression so she was already well medicated. I was pretty beat up after the end of treatment (I am a week shy of 2 years post Tx now). My anger and occasional verbal abusiveness (which I don't even remember) didn't help matters either. She really needed some space for her own sanity.

Being a little more transparent with your closest friends might be helpful for you also. There is a lot of therapy to be gained in venting. They still won't be able to relate unless they have been in your shoes.

What you are experiencing are the stages of grief, not because he may or may nor survive, but because you are greiving your previous pre-cancer life together. Some counseling and/or a support group would really benefit you right now.

The 5 stages of grief are denial, rage & anger, bargaining, depression, and finally acceptance. Please note that they won't necessarily come in order and some may occur simultaneously.

I have a therapist that I see every week. For a long time it was really helpful and after each meeting I was able to walk tall and face the disease head on. But that has diminished over time and the further that we have gotten into this thing the harder it has become.

As far as intimacy goes... we were already fighting about sex and romance before his diagnosis. Now all of the arguments seem so petty and I wish that I would have just given in instead of being so damned hard headed and principled.

Our marriage was on the brink when we found out about the cancer. We are stronger now but for all the wrong reasons. I am just hoping that when this is done that we can mend the broken pieces of our lives.

Love was never the issue here. There is no doubt by either of us that we both love each other beyond words. But my husband is the kind of person who believes that he must sacrifice his own happiness for mine. Often he mistakes this as an excuse to leave my life. His reasons are simple.... if he removes himself from my life I will be better off. It is something we have been fighting about for a long long time.

Now I look back on every argument, every disagreement, every principle that I just had to stand up for and I wonder if any of it really matters.

I think that I stay on the couch because I have a little peace there. I am away from the disease that I am hating more each day even though I feel so rotten that I at least have the option of taking a respite from this madness and he does not. I feel guilty if I walk away and do something that is supposed to be fun, or if I take time for myself, because he can never do that. The disease is every moment of his life and it is not fair that I can occasionally walk away from it.

People always say, "Take time for yourself", but I can't because that is time away from my responsibilities and the things that need me the most.

There will be time for rest later. There is no time to waste today.

Cindy

I agree with each and every word that Nicki has posted. Distancing yourself would be so painful for your husband and he is already dealing with having cancer. How does Harry feel about it? How is Harry dealing with his feelings of depression and fear? Focusing on this might make it easier to deal with all that is going on for you. I'm not saying neglect yourself by any means. But Harry has so much to deal with and to think about right now that worrying why you are staying on the couch seems a waste of energy for him. Tell him why, explain it to him, give you and him some relief. There is no set of rules for dealing with cancer, all we have is the experience and knowledge of those that have faced treatment before us. Your role in this is as caregiver, Harry needs you, alot!! When you're feeling really, really crappy and depressed, just want to scream and holler and cry.......think of how Harry feels. I was the patient and that helped me alot. When I felt like pitying myself and focusing on how I felt, I would think about my kids, my husband, how they felt and how I didn't want to add anymore to their stress. It helped me so that I didn't get wrapped up in my feelings and make the disease all about me, because it wasn't, cancer is a family affair.
I hope you feel better soon.
Minnie

Wow Minnie.

I agree 100%. I am going through something similar to Cindy in that I feel bad when I am not with my mother on hospice. I go every day and then I feel guilty that I should stay there longer. But, I have work and other things to do. I rarely take time for myself, but it is so important to do that..My own mother wrote me a note (because she cant speak.) before going on hospice to be strong otherwise I was of no use to her. That really helped me and made me stronger. Also, someone told me that it was important that my mother thought she was not a burden. I try hard so that she doesnt feel that way. Also, when my mother first got sick, she pulled away from people and the family. Someone told me that when people have cancer, they are sensitive that people dont want to be around them. I believe it is important to not treat him differently..to try to keep some normalcy, CIndy. Believe me, I know it is hard. Trust me. I left my mother today in her hospital bed in the house so sick and I want to cry every day that I am there..But I try to stay strong. and Cindy, you need rest and some fun in order to do that. Please try to take some time for you but dont let this disease ruin everything you care about. I am thinking of you Cindy...and praying for all of you
Stephany

Cindy,
if you don't take care of yourself, no one else will. It takes tremendous strength and focus to be a patient and also a caregiver. It also takes a positive attitude. Maintaining your mental and physical health has to come first.

In AA thay have a little pamplet about staying in the "now". The past is gone and NOTHING anyone does will change it - let it go. The future is not yours so worrying about it is futile also. All you have is today - right now. Stay in the moment and the battle becomes a little easier. It is insanity to get into the "woulda, coulda, shoulda".

Most of us have been blessed with tremendous healing in our marriages as a result of this disease. My wife and I were going through similar trials to yours and I can say that today we are closer and more together than ever, although we had some rough moments during the treatment and post recovery phase - and that mostly because of me.

Sex will naturally go on the back burner for a while as a result of many aspects of the treatment. It was the last thing on my mind as I was fighting for my life.

Maybe it's time to change therapists. Sometimes we outgrow them and need to find a fresh perspective. These are issues that you should be able to find some help for in therapy. I commend you for staying in therapy. I have had a few bad therapists over the years that I have "fired".

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