Hello to all....It's been along time since I've posted. My husband Stephen finished his treatment in May 2006 and his first scans were clear, haven't had the six month scans yet. We are very grateful for his clear scans but our lives have been turned upside down. I do not know what has hit me since his diagnosis on February 28th 2006, ironically my birthday...We have had to move away from all our friends because Stephen had to find a new job and he has been so down because he still cannot taste any food, he has no saliva at all, even with the evovac. He is so thin and although he is very fortunate to be able to swallow at all, I think he is so depressed about not being able to enjoy eating. He was never a very big eater and always very thin but he used to enjoy his buffalo wings and cheeseburgers very much. Will his taste come back any more? Its been about 8 months since his last treatment. Will my husband ever be the same again. Theres very little joy left in our lives, with the exception of our two beautiful children, 4 and 6 year old son and daughter, who keep us going. They are about the only thing that puts a smile on our faces these days. I know we should be grateful he is alive and we are..but how do we pick up the pieces. It was so much easier for me to be strong when I was taking care of him and i had something I could do about it. Now I feel like I'm just left with these shatterd pieces of what was our lives. I hate where we live, I don't want new friends... I just want my old life back. I know I need to get a grip and start being thankful for what we do have. The funny part is that I was so strong and positve and thankful for what we had and I knew how it could have turned out but I find as time is passing and the reality of what has happened to us,to my husband, is setting in, I'm getting angry and resentful. I did not have these feeling when Stephen was sick. It is causing alot of problems in our marriage Will life ever feel happy again for us???

Dear Kerry, While I know you need hugs, I don't think you need to hear platitudes. You and Stephen had a lousy thing happen in your life together. And you dealt with that together. So Now What?? The answer is up to the both of you. Your marriage and love for each other is either strong enough to surmount these issues, or it is not. [hopefully for your children's sake, it is]. There are some pro-active things you can do to work on this. #1. Get some therapy for yourself. You are dealing with a bunch of tough issues all at once- a new location, loss of old friends, a "different" husband than the man you married, a different life than what you expected when you married him, the realization that life is not always a bed of roses and you both have come face to face with the fact of mortality. You and Stephen will each have to grapple with these issues in your own way and at your own speed. The important thing is to be honest about the issues you are facing and get professional help!
#2. Get yourself involved in an activity that involves helping others- volunteer somewhere that you can contribute in a helpful way to someone else's life [school, nursing home,cancer support center, church ] Try to redirect your focus in a different direction. When a caregiver no longer has a "patient" to care for, her\his role in life can become unclear.
#3. Rethink how to rejoice in the daily gifts of life you have- with your kids, with the fact that Stephen is a survivor, with your family. In other words-find your blesings and start counting them. Your question about whether or not your life will be happy again is pretty much up to you. Amy

Kerry,
What Amy said, in spades. Speaking from the same place your husband is, it is incredibly depressing at times to even contemplate the "new normal" I dont like it one bit either, but I have two choices, just as he does; learn to accept and live the new normal, or not.

You'll note the word "learn". It is a learning process, and as with most learning, the most effective way is with a teacher. Seek competent councilling, right away. Your CCC almost certainly has dedicated staff in that specialty.

Many patients myself included suffer profound depression following treatment. Depression is a very dangerous condition, if left untreated.

Treatment is really straight-forward, and talking through the really hard issues with a medical professional is, I think, as important as the treatment of the cancer itself.

My wife and I began using the CCCs councillors before I even began treatment, and continue to even now, months after. We'll keep going for a while as well. I'm quite confident that I would not have gotten through this ordeal without them.

Talking is the key; keep coming back here too...we all love to talk!
Wayne

Kerry, Just having the guts to open up in this forum is a giant step. Amy and Wayne make great points. Where you are at now in your life is normal but the true test is where you both take it from here. With your passion I'm betting on you.

Kerry- Only you can fix your attitude. You can support Stephen but you can't make him do anything. Even with professional help which unfortunately many men( including my husband Gil refuse to accept) it is no instant fix.Life can be sumed up with platitudes because they are true but you have to decide to make life worth living.
Gil has been unable to eat normally since he strated radiation and finished treatment. It is now going on 15 months. The radiation caused scarring which totally covered his esopaghus. Multiple surgeries and weekly dilations to open it up have allowed him to eat very soft foods i.e. it takes him an hour to eat a small piece of meat loaf and mashed potatoes. He is very fustrated and sad but refuses to talk.he refuses to go any where with anyone ,after gaging and vomiting when out. I can't walk in his steps. I understand why he has isolated himself but I can't live life that way.I love him for ever and you are right- it was easier when we were actively caretaking.
So what do I do- I walk, stay with him and love him but treat myself to outings either with friends or by myself- to get out of the house and frankly- away from his gloom .

Hi Kerry,
I am sorry to hear that things have been so rough for you and Stephen. In my opinion it's not unusual to feel the way you 8 months after treatment. When you were a caregiver you didn't have time between Stephen and the kids. I think there's some great advice in this post. I would strongly encourage you to get therapy for your own feelings as a good starting point. Have you tried calling Cancer Care? They have counselors you can talk to on the phone. Sometimes we just can't see what's right in front of us and a neutral third party can help us clarify what's really going on.

I remember Stephen had a lot of issues right after treatment with pain and not having any energy. He's come a long way since then but it also sounds like there are ongoing issues with depression. If he's not getting any help for it those feelings will intensify.

As a fellow caregiver I had to step away from what was happening with Jack and work on myself when it was starting to get away from me. We can't actually change another person, but we can look at the things that are preventing us from moving forward. I know you want you old life back but you also know you won't get it or you wouldn't have posted that. That's a good sign. I find that saying something out loud makes me feel like I can work on it...like when we were in active caregiving mode.

We can't keep our feelings bottled up inside, they don't go away, and they only end up hurting us more than if we'd dealt with them in the first place.

Once I got in a better mindset for myself, I found I was able to be more honest with Jack. The conversations changed from "you have, haven't, need to" to "I feel, want, need". You are the only one qualified to discuss what you are feeling because it's personal and the severity or scope are different for all of us. What some people find tolerable causes others extreme pain.

You and Stephen have a big common ground in your children whom you clearly both love. Maybe start there. Even if you hate where you live, you love the people you live there with. Start on what's happening inside your home and then work outwards to the rest of the neighborhood.

I hope that things get better for you soon and that there's something good still waiting for you in 2007...it's only January 15th so it could happen. Surprises are not always the bad, scarey ones - maybe there's something you haven't seen yet in that new place. Glad to hear from you.

Regards JoAnne

Kerry,

Posting here and getting those feelings out in the open have probably already helped. Let your H read your post. You 2 have been through so much but you need to communicate now more than ever. Find a quite time with no distractions and openly talk about everything that concerns you. Most guys keep a lot inside even when we shouldn't. My wife sometimes has to sit on me to get me to let her know my feelings. I find I am more open with her now after what we have been through so maybe he needs just a little prodding.

You really didn't mention but why can't you all go back to the old place with your old friends and get a new job even if the pay is not up to par at first? Your issues seem more important than his new job.

I'm also 8 months post treatment and identify completely. I have almost no taste and very little saliva. At first, it was impossible to accept and I even decided that I would rather not continue to live in that condition. In my particular case depression was the cause and the Wellbutrin treatment for it has been successful.

Now, I am not at all happy about the inability to taste, the limited food choices and the persistent dry mouth. However, those things no longer dominate my life. On whatever level, I've been able to accept the 'new normal' and work around it. In other words, screw it. It is what it is and will not control how I feel.

RileyMc, So true there is so much we can't beat but somehow like you say screw it it's not going to beat me either.

As usual...unbelievably comforting words that I could get no where but here, where we all share such a deep understanding of one anothers pain. Thank you all for your time and your meaningful words. I intend to follow all of the advice and words of wisdom ...baby steps.