We're at 3+ months past treatment. He's back at work, but short of that, all he does is sit on the couch and watch TV (endlessly). Because of his job change, we moved to a new state just as treatment started - so we've spent no time exploring our surroundings and the new house isn't even unpacked. I do as much as I can each day, but I'm reaching the point of exhaustion. Today I got out of bed at 3 AM to squeeze a few extra hours out of the day. Somehow I'm making it on just 5-6 hours of sleep a night, but I'm sure it's taking it's toll.

I work a demanding full time job (that I love and that has been my salvation through this horror) - and spent hours this summer catering to his every need, nurturing his every symptom and mood change. I took four weeks unpaid leave to care for him during the end of treatment and nearly killed myself trying to keep my job while supporting him through treatment and beyond.

Now, here we are post treatment and I'm responsible for *everything* in this brand new house and I'm beat to the core. I've lost 40 pounds because I can't find the energy to eat (though I admit I'm delighted to be down to a size 10-12 - yippee!), but he's the cancer patient and he's only lost 15!. I'm already on anti-depressants, I've found a few friends here (but admit my support system is very limited and support groups here are not plentiful) and I'm finding myself getting furious with him for sitting on the couch endlessly. I've already lashed out at him twice!

I honestly think if he would get "out there" (e.g. take a walk in the neighborhood, see a movie) he might actually start to feel like a human being who is more than just a cancer patient! He's only 45 years old and he has the energy to do it (he's recovering well!), he just doesn't have the drive. I got him to a psychiatrist who put him on antidepressants but I've not seen much of a change.

I'm so angry and frustrated, I've actually given thought to leaving the relationship. I'm too young to spend the rest of my life with a man content to watch TV on the sofa and watch his life simply pass him by. It ISN'T the cancer that will rob him of his life, it's his own choice to be sedendary and sit on the sidelines. Sadly, there aren't many places to share feelings such as this - so please forgive the outburst...these aren't pretty thoughts, but they're honest.

Has anyone found themselves here?

Please don't take this the wrong way, but if this is how YOU are feeling...........just imagine how HE is feeling. Having a wonderful husband who was a fantastic caregiver, I KNOW the feelings and emotions that a caregiver experiences first hand. I also know the feelings and emotions that the patient, the one whose life is threatened, feels and they are two different levels. With that said, I don't doubt at all that your husband is depressed. The reality of possibly dying and horrible treatments that make you feel sick in a way you never imagined have a way of doing that to the best of us! We live our lives with this imagined safety net, we all believe that we will live to a ripe old age. When we're diagnosed with cancer, it rips that safety net away and we live with a fear that only a cancer patient can understand. My husband doesn't understand the depth of my fears, even though he's been with me the entire way. I live in a different "world" then he does now, a world where it's a reality that I could die from cancer. Yes, he's scared that I might die............but, cold as it is to say, if I die, he still continues to live. His WAY of life is threatened, but his LIFE isn't..........and that makes a difference, in my opinion.
3 months past treatment isn't a very long time. At three months I was still not eating very well and it's the time when my depression set in, big time. All of a sudden I realized that none of this was temporary, it wasn't a bad dream, I wasn't waking up any time soon. I wasn't doing anything to actively fight the cancer and my energy level was low. If your energy level is low and you're exhausted, imagine how his body feels after this brutal treatment? Give him more time. I am not saying baby him and enable him to lock himself in a room or zone out in front of the TV.........getting out and walking is a good thing. This is the perfect place for you to vent your feelings and all of us will understand.............and then we will help you understand that his feelings are huge right now, and it sounds like he's not sharing them. Try something small to begin with, such as a walk each evening, or at least sitting outside in a chair. You said he's back to work? He's probably very tired by the time he gets home, like I said, three months post treatment isn't that long. Many of us took a year or so to get our energy levels even close to normal.
Wishing you much luck and hoping you don't think I'm knocking your feelings........your feelings are real and need to be vented. At the same time, his are also very real AND he has to deal with the physical beating he has taken at the same time.
Take care,
Minnie

Deb,

Pardon me for being abrupt but you need to tell him to get off his *^% and get on with the rest of your lives. I know what my wife did for me/us when I was in need and I feel soory that she had to go through that. I am also 3 months out and I am working 10 hours a day and doing just about everything I was "responsible" for pre Dx. I could have tried to con my wife and taken the easy way but I wanted my life back and the only way to get it back was TO TAKE IT BACK.

Stop enabling him and tell him to get on with life. JMHO

We're all different in how we recover. Three months out I was still in need of prescription pain meds for mouth pain and was physically extremely weak. There's really no way I could have even worked a full day. It's quite possible that after he works a full day, all he has energy for is the couch. You seem sure he has the energy to go take a walk but I wonder how you know that.

Actually when I get home from work lately the couch is all I've had energy for, which turned out to be a symptom of my thyroid having shut down, but I'm sure your husband is being tested for that.

Also, I agree with Minnie that as much as you have been through yourself, there's a level of this that he is going through that are really not the same for you. As far as you know, there's no reason why you won't live into your 80s (the avergae expected life span of Americans today). For those of us who have had this cancer, there's a lot more uncertainty and it really does rock your world. Especially when you are young.

The bottom line is you've both been through a lot. He may be responding with depression. You seem to be responding with a lot of anger which, is perhaps directed at him instead of directed at the disease that he has been fighting so hard. If he is depressed, sensing your anger is likely to make him more depressed and feel like more of a failure because he got this disease, causing a vicious circle where he withdraws more and you get more angry.

My husband and I went through a real marital crisis at the end of my treatment. Some of it was due to us both just being totally rundown from fighting the cancer in our different ways, some was due to unresolved issues from before that came out during that time. We went to a good marriage counselor and it was extremely helpful. I'd encourage you to do the same. The botom line is any tendency we have to respond in self-defeating ways to stress, be it anger and the desire to break and run or depression and the desire to just sleepwalk through life because it has been so hard, is going to come out when two people have to go through the endurance test of oral cancer treatment!

I'm glad you felt you could come here to vent about this and I think time alone will make some of this better but getting counseling for you both and maybe some antidepressants for him could help save your marriage in the meantime.

This disease has taken so much from you both already. Don't let it take your marriage without a fight.

Nelie

I agree with David. To help get over this bump in the road of life, you need to get back to doing as much of what you used to do as you are physically able. Sitting on the sofa brooding about having had cancer and worrying about a reoccurence isn't healthy for either the body or the mind. You didn't say what kind of work he does, but if it is a desk job, he should get out and take that walk before he loses any more muscle. I think the sooner he gets his mind off cancer, the better he will feel.

As for you girl, take care of yourself. Take some time for yourself. If he won't go to a movie, go with friends. Go do some of the things you like to do. Maybe you can get him interested in doing them too. The boxes can wait.

Take care,
Eileen

Hi Deb,

There's no good way to go through this, it does rip away any sense of security you have about the way life is. Both caregivers and patients suffer in different ways. Whether you live with the fear of losing your own life or the fear of being the one left behind to pick up the pieces without the love of your life - it pretty much all sucks.

You're hearing the perspectives of both patients and caregivers here and I hope that you are feeling the support that everyone is offering by sharing their own experiences at this stage. Vent away, this is the place for it.

I think we're all telling you that it really is time to do something for yourself. I understand how frustrating your situation is and seeing those unpacked boxes must feel like a raw exposed nerve every day. Neither one of you has had a chance to enjoy the new town or the new house. Talking to an objective person like a counselor may be the best way to sort out all these feelings and I agree with Nellie that you both need to fight for this relationship as hard as you did against the cancer. Also bear in mind that it's a BIG adjustment to go from patient/caregiver back to being a couple and that may be playing a part in this. Roles are all screwed up during the treatment phase and this is the part about finding your way back to a new normal. Things are never going to be the same for either one of you but that doesn't mean they have to be bad. Just try to do it together.

One day I got so fed up with the whole situation that I stormed out and went for a massage, something I very rarely do. I showed up at a spa and asked them what they had for stressed out nutjobs trying to keep it together. With a completely straight face the receptionist told me that was the caregivers special, recommended lavendar aromatherapy, and offered me a cup of herbal tea. That was the moment I discovered I was not the only one if they had a special package devoted to it. It was nice to be pampered and I realized that I was not really angry at Jack, I was missing the intimacy that we'd had before the cancer. I wanted our old lives back. When I got home all lavendared up I was able to express my feelings to him calmly. Use the "I feel" words and not the "You are or aren't", the conversations go much better.

Everyone does recover at different rates and it takes at least 4 weeks until anti-depressants kick in. He really may not be able to do more than sit on the couch after work right now but I'd still encourage him to try and ask him to let you in on how he is feeling. Is it fatigue, depression, fear, normal sadness? What's going on is important - because it is affecting both of you and threatening your relationship.

It's very positive that he's gone back to work so he's making progress. He's getting up, getting dressed, and getting out of the house. He may be having difficulty because he's having to keep it all together during the day and deal with people on his job that he also doesn't know all that well. Is he telling you how it's going at work? Is there a lot of stress there? Are you telling him how you feel and what you're afriad of? All of this is very complicated and very specific to each individual.

I have a good 25 year marriage but that doesn't mean we don't have our moments and get on each others nerves or that we approach everything the same way. Add cancer to that and you get the perfect situation for misunderstandings.

Keep posting and let us know how you're making out. Meanwhile go get a lavendar aromatherapy massage. I can personally recommend it. You will get through this part.

Regards JoAnne

Deb,

What great advice you have received from these wonderful people. I ditto all of that.

Most men do not talk much. So think back before all this started. Did your husband talk in great detail? Maybe not. He is only 3 months out and I am sure still very fatigued. Going to work is probably all he can handle right now. I am surprised he can do that.

I get tired real easy. I am only good for about 3 to 4 hours in the morning. By late afternoon I am ready for a rest period.

It is hard to be a caregiver. You must make time for yourself. Go out with friends, family or what ever. You need to take care of you as well.

I would tell my husband to go and see friends and get out and do what ever he wanted. I did not want him to sit and do nothing because I was not up to it.

Moving is hard on everyone and having to deal with the cancer on top of it is just way over the edge. My heart goes out to you.

Now it is Christmas time. Maybe your husband would go for a night drive with family and look at all the Christmas lights. ??

Thinking of you both...
Take care
Diane

Thanks everyone for taking the time to share your thoughts. It was just a bad day and I needed a place to "get it out".

Hey Deb,

We've all been there and this is the place to get it out. Nothing prepares you for this experience and being able to talk to others who are going through the same thing helped me clarify my thinking on lots of things.

You'll have better days...and then worse days...and then better days, but eventually you'll find what works for you both and get back into life. It's a process with lots of ups and downs - I'm still having those bad days, but less and less.

Hang in there and please let us know how you're doing.

Regards JoAnne

You know my wife had to play the bad "guy" a few times during my Tx and while I didn't like hearing it, I knew she was 100% correct and I did what she told me to do. She seemed to know when I needed her soft love and when I needed her HARD love. By the way you sound, I think he needs some of your HARD love.

Deb,

As a former (long time ago) patient, I've been reading this thread and trying to come up with a balanced answer. Based on everything you've said about your husband's experience to this point, I'm mostly in the camp of those who say tell him to get off his butt and get on with life. I do feel some sympathy for the fact that if he's working, he may run out of energy by the time he's home. I know I was trying to hold down my job for the entire time I was going through treatment, as I was fairly sure they'd find some excuse to fire me if I took too much time off during surgery/radiation. By the end of the day, I was pretty well exhausted most of the time.

However, I also felt somewhat robbed of the vacation my husband and I had planned for the summer when I was being treated, and we were both determined to make it up in some way as soon as we could. While we couldn't exactly duplicate that trip, we were able to schedule a couple of different ones within the first few months after my radiation ended -- ones that were a real change of pace and exactly what I needed. The first one was within a couple hundred miles from home, so I felt there was a "safety net" in case I had to get back in a hurry. The second one was much farther away and included taking sailing lessons in the Caribbean -- by the time I was done with that, I felt like it really was time to move on.

Before cancer, I felt very healthy and assumed that I would live till I was past 80 -- having cancer made me realize that that might not happen, and that anything I thought was worth doing should be done sooner rather than later. It taught me some lessons about how I should organize both my work and non-work time in a much different way than I had before.

I hope your husband's psychiatrist is doing more than just prescribing medication. If your husband is physically able to do more, it sounds to me like he needs to find some level of motivation to make the most of every day.

Cathy

Great advice Cathy
My biggest phsycological issue was I hated people feeling sorry for me then it hit me that I was more at fault than others. I was out of work and out of touch with others. Without realizing it I was setting myself up for a life of self pity. I kept all of my fears inside and each day that went by I was further and further away from my normal life. I think I expected so many friends and family to be there for me but my true growth and happiness came back when i grew up and took control of my life and feelings. Now I realize that it is not their job to be there for me but for me to be there for them. ie...(Brian Hill)
Mark D.

I would imagine he will sit in front of the TV as long as you let him. Something called "tough love" needs to come into play here. I don't know how you will manage it, but you need to make time for yourself. And you need to let him do some things for YOU. As long as you pamper him and give in to every mood, you are not really doing him any favors, and as good as it feels at the moment to do something positive and concrete to make his journey a little smoother, there comes a time when you have to let go of the reins and let him drive the horse and buggy some!! I am suggesting you try it, gently at first, and see how things go.
Good luck , it sounds like you have been a great help to him when he needed it the most. Now that he is better, ease up on yourself!!

Andrea