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.

Hi Kerry,

Believe me when I tell you that you nor your husband will move on until both of you face the fact that your old lives are NEVER coming back. The toughest stage of recovery for me was accepting that. I would be overwhelmed with feelings of homesickness, that was the only word I could think of to describe how I felt. I missed my old self and my old life so desperately. It made it impossible for me to learn to love my new self and my new life. And that is truly what we all have to do, in particular the ones of us that suffer more severe side effects that are permanent.

Say goodbye to your old life and help Stephen to say goodbye to his old self and THEN the clouds will lift............I promise you this will happen. It's amazing what the human body and mind can adjust to and accept. I still have moments of missing some of my favorite foods, but it's not that bone deep feeling I used to get that would stay with me for hours after. And my healthier body helps me accept it also!

He's only 8 months out, he's still battling the depression of it all and so are you. Get him to talk about "missing" himself. Once I started sharing my feelings it made me feel so much better.

Minniea you are a perfect example of facing not only the fear of cancer but the physical aspects of this horrible disease. You have been a good example to many and I'm prouder of people like you who strive to keep moving forward emotionally under such unstable times.
P.S. Minnie my 12 yr. old got a rebound off the other teams Free Throw and put it up for 2 points in the wrong basket yesterday. My wife is the only one who jumped up and cheered.

Minnea. I think you just hit the nail on the head. I needed to be told that because somrwhere inside I've been fooling myself in thinking things could be the same "if this" or "if that". But there are no ifs about this and thank you for putting that down on paper for me so that I can see things more clearly. Sometimes you need, or at least I need, someone to spell things out that maybe deep down you know but hearing someone say it helps me to know that this is how it has to be. And we need to repair our marraige so that I can help Stephen accept his new normal. We have not been there for each other and I know he still needs my support to continue his recovery. We both need some individual therapy as well as marital counseling but you just laid out our goal.... Leave the past behind and try to start anew...
With sincerest thanks...

Kerry,

You've gotten lots of great advice about some of the positive aspects of "moving on" to the rest of your life (which I totally agree with). Also, even though it may feel like a lot of time has passed since your husband's treatment, and he may think he should be fully recovered, I can tell you it took me much longer than that to get where I could really enjoy eating again, and a very long time to heal to the point where I could get some additional saliva back. (I also had XRT and there was nothing available at the time to preserve saliva glands, so for me it's been a slow process with a combination of medication, careful dental hygiene, some extra fluids, and Biotene rinses.)

Then, as I was starting to feel more fully recovered, my husband went through a serious health crisis of his own with an extended hospital stay and several weeks more of recovery at home, and we had a role reversal for awhile.

Like many other people, I found that this kind of experience shook up my approach to my career, as well as several other aspects of my life, and it was uncomfortable for awhile as I tried to figure out what I could do and what I thought I SHOULD do. I actually came to see that there were parts of the "old life" that weren't as great as I once thought and that this was a chance to do some things very differently. I've said it here before and I'll say it again -- if someone told me now that I could go back 18 years and erase the whole cancer experience and then just continue on with the "old life", I'd say "no thanks". I've had too many great opportunities that have opened up that I never would have been in a position to see or follow up on if I had just kept on with the old routine and what I was accustomed to in the "old life".

Cathy

Cathy makes some great points about what we learn from the experience of cancer. I thought it sounded so cliche when I was a "newbie", but now I see the depth of that statement. We DO learn and take from cancer IF WE CHOOSE TO. We can also make the choice to let it define us and let it steal more then our health. In my opinion, we all go through a stage where the cancer and the fear of the cancer overshadow any logical thoughts we might have, and we give into the fear. Then, when we realize that we just might survive this cancer, we are left with all the changes in our lives to deal with. That is when the REAL work begins! There is no preparation for this type of life event,such as we have for puberty, childbirth, etc.,...........so we have to muddle through it. Now that I'm far enough into recovery and in a frame of mind that allows me to look back and see myself more clearly, it amazes me how powerful the human mind is. When we are in the early stages of recovery we don't understand until much later just how strong we really WERE during those tough times. We don't give ourselves enough credit for what we endured.

Kerry, you are on a true roller coaster right now. The emotions you are feeling and the ones Stephen is feeling are so overwhelming that it makes you just want to crawl in bed and sleep for years and years. At one stage for me, just about the point of recovery your husband is in right now, I had a difficult time spending meaningful time with my girls. Anytime they seemed happy, it made me sad, because I was so fearful of dying and missing that with them, of leaving them to live without me. I pulled away from them and pushed my husband into a more hands on role. Three years later, that stage in recovery turned into a blessing for us, as now my husband will tell the world how much closer he is to his daughters because of the cancer experience. When our youngest, who is now 12, started her period about 6 months ago............she had no problems telling her father, lol. I love it.
In the short span of three and a half years, I went from worrying about living another year, never thinking past a week or so...............to feeling natural while making plans with my family for trips a year from now and talking to my 16 year old about which colleges we want to visit next year. But that all takes time and growth on our parts. Time is one of the most important words in cancer recovery, in particular a cancer that has such lasting effects as oral cancer. It's a tough lesson for impatient people such as myself, but at the same time, it has made me slow down and ENJOY the things that seemed small and and didn't warrant as much attention from me before I had my life threatened. The joy of stopping in the middle of something I'm doing to sit on the bottom step while my 2 year old grandaughter sings her ABC's is still new to me, leaving the dinner dishes on the table to go take a walk or bike ride with my 14 year old is still a new feeling for me..............all the new things in my "new" life. In my old life I would have said, "we'll do it later" and I would have kept walking down the stairs past my grandaughter and I would have cleaned all the dinner mess until my kitchen was shining........and it was to dark outside to take a bike ride. Boy, the things I missed in my old life!
I have eating issues that my family has had to incorporate into their lives to a point and I also wear my cancer on my face, something else that my husband and children have had to adjust to as have I. We go out to eat all the time now, but the first thing my husband and girls do (which always makes me grin) is they will check out the menu and give me suggestions on what I can probably eat. I continue my coaching at the school and have found a world for myself that knows my cancer story and is aware of why my bottom lip droops, understands my surgeries, etc. But this acceptance of myself didn't come overnight, it came in stages and I suspect there are more stages for me to go through. It's tougher on us oral cancer patients, in my opinion. It's impossible for me to "forget" about the cancer as I always physically feel the effects of it, and forever will. My girlfriend of 10 years had breast cancer 6 years ago. Mastectomy, chemo, all of it. She tells me that she goes weeks without thinking of her cancer. But she doesn't wear it on her face, it doesn't affect her eating or her speech, etc. We do have a tougher road.

Stephen will reach his stages in good time, and he'll get through them. Having young children is a bonus for him, they are like a natural healing power. You will also, if you approach this with the right frame of mind, come out of this cloud with a depth to your marriage that a "non-cancer" couple cannot possibly achieve. The connection I feel with my husband is something I'm blessed to have. I'm also aware that it wouldn't be as powerful if we hadn't shared this experience together.
Please keep us posted on how he's doing, and how you're doing. You are such a key player in his recovery and in how your children will incorporate cancer into their lives. Take care,
Minnie

Hey Mark,

Can I tell you how much I LOVED the story about your 12 year old and the wrong basket? My 14 year old daughter (she's now reached 5ft 8) plays ball and it's such a fantastic sport. I'm like your wife, I love to cheer loudly and proudly! I even stand and holler when the kids on the other teams make a great play.......boy does THAT get me some strange looks from our home crowd, lol.

Just finished reading all the posts. So much good and oh so true information. I still have goosebumps from reading Minnie's. You are so right. This beast has caused me to not work for the past 10 mos, but I have spent so much time with family and friends. My grandchildren got to stay with me a few times over the holiday vacation, my son was in from Ohio for a week, I've made it to my nieces basketball games. Things I couldn't find time for before. Now I know I'll find that time. I was looking and waiting impatiently for the "normal" to be back. But the past isn't the norm anymore, it's the present.

Kerry,
As the primary food lover and provider for our family I have to tell you that not being able to cook was just as rough on me as not being able to eat. I remember the horrifying look on their faces one particular meal when I asked how everything tasted. It was honestly all just cardboard to me. I missed the taste of coffee for almost 2 years and also green tea off and on. The first time in my life I pickled some jalapenos and they happened to be the hottest I remember in my life. I had to reach for the miracle mouthwash to ease the pain...but I smiled through it all because I could really taste how great they were. To digress a bit, I happened to have severely whittled down on the list of "first time" things in my life over the past 3 years especially. Make that list of everything you BOTH want to do in life and pick them out in the right order and GIT UR DONE, girl.

I enjoy all foods now and really started putting back the weight about 18 months after treatment ended. Yesterday and today I spent 1 to 1/2 hours in a refrigerated manufacturing plant and even spent some time in 10 below zero in the freezer. I almost panicked a couple of weeks ago when I realized this will be the farthest from my water bottle (it is not allowed in manufacturing areas). My lips were chapped for days last time and I imagine what they will be like tomorrow but guess what...I DID IT!!!

Life is different now but so much deeper, if I can use that term. Someone on the board long ago mentioned "don't sweat the little things and all things in life are really little things" or something like that. I gave up worrying for the most part.

However, the fear comes back like yesterday when I had a voice mail from the nurse asking me to please call so we could review the results of my annual chest xray last week. I was almost planning my funeral by the time I got in touch only to hear everything was "normal again" on the other end. I had convinced myself that she would have left those two words in the message if everything was fine. WTF...do they ever think things through when they leave messages? I guess they didn't want the wrong person by accident to hear everything is fine???

Anyway, hang in there things will progress slowly and then suddenly a huge amount of time passes and you find yourself offering the same words of encouragement to someone exactly where you were at one point. The advice freely offered from everyong is spot on.

Ed

You really said it all ed. I keep thinking what a baby I am to worry over my husbands after treatment symptoms and tests. It takes so little to shake up our world and yet you are right- the little things who didn't call, cancelled plans, billing error nothing like that even registers on the radar. My husband doing a dance step in the kitchen or playing with our golden retiver or just a hug for no reason makes me smile.
Kerry - Hold on to all the love in your family.

I'm starting my 2nd anger management group on the 28th. Churches and many hospitals and HMO's, etc., offer them. Steve has a lot to look forward to - it took me almost 2 years to get back to about 98%.

Life can definitely get better. His expectations may be a little high for 8 months post Tx.

I guess when they told me it was cancer I knew things would never be the same we cant change things we can only accept and deal with them. I still have trouble eating 4months post but was able to go back to work 6 weeks after treatment it was hard but I needed it for mental health I work in construction so it is physical and I still get tired but I can only get stronger and accept the new me