I reread my post about the wonderful surgey to open the scar tissue in my husbands esopaghus this past summer. the surgeon at MSK said the opening was normal and we were done..Little did we know that this would become as bad a journey as the cancer treatments. 2 weeks after that surgery he went for a barium swallow and the stricture had reclosed the opening, back to MSK 3 more times. Then our local cacer center continued to dilate every 2 weeks.he was able to eat cream soups but nothing lumpy. In mid- september the dilation wire slipped and puncured the scar tissue.(He was put in the hospital for 2 days-preventive-antibiotics). 3 weeks later another dilation but now going thru the peg tube up. he has had 2 and can barely swallow his silaiva. The surgeon is going to do them weekly and hopes the sticture will give up and stay open. He refuses to go back to MSK. My husband asked him this past wednesday if he would be able to eat at Thanksgiving- All he talks about is mashed potatos and gravy. The doctor says he will never eat normally and then Gil says but will I be able to do small bites and the doctor says maybe.
My heart is breaking. he is physically back to normal- working part time and has gained 20 of the 60+ pounds he lost. Mentally I feel he is clinically depressed. He refuses to go anywhere or even have friends come over. He is tied to feeding thru the peg every 4 hours. He says if he had known this would happen he wouldn't have had the treatments. He feels he has no quality of life. Every night from 6pm on he sits in the kitchen and watches tv with his head in his hands..I have spoken to the doctors with my concerns . They talk to him and offer help. Around the doctors and in the hospital he is charming and upbeat and of course refuses everthing. I have used all my social worker skills to no avail. It is difficult for me to eat around him because I feel so guilty. He is a good sport but I just can't. Last night I made a meatloaf. He tried really creamy mashed potato and almost pureed meat loaf- the tiniest bit- He couldn't swallow. He began to cry and ran from the kitchen saying he had ruined my life and hated his life. I told him he was my life.All the caring things:How he has his mind,speech, hearing and physical abilities.
I am telling you this because I can't stop crying . I don't know what to do. He has closed off and I love him and gladly accept this new normal.
On 11/7 we get the results of his 1st after treatment (7 months)full body PET scan. he has had cat scans and sees the RO,ENT and MO and they can't see or feel any thing abnormal. I am beside my self with worry. Will he ever accept the fact that he may only be able to eat through the PEG and maybe icecream? What if the cancer comes back?

J12-I sent you a private message a few minutes ago. Amy

My heart goes out to you and your husband because I'm in a similar situation. I went thru the chemo and radiation without a hitch....but....my throat and ability to swallow right AFTER the treatments is a total different story.

I've had 3 dialations and they haven't helped much yet. I haven't had solid food since April. I'm 6' 4" and now weight about 230lbs. I've lost 150lbs so far in about 7 months (I was very overweight to start with...so losing that much weight was not really a real bad thing...just a tough way to do it).

So...tell you're husband he's not alone. I dream about eating normal food again...but it's looking like there's a possibility I may not be able to.

VERY, VERY FRUSTRATING so I know exactly how your husband feels right about now. I live alone so that might actually help a bit not having to watch someone else gulp down food easily.

BUT.....I'm NOT giving up and he shouldn't either.
There's got to be something WE can do.

Keep me posted if he has success with anything.

Gary O

Jordan,

I am in the same situation although I haven't had as many surgeries to keep my throat open that's because they put a stent in it after the first surgery which perforated it. The thoracic surgeon claims this stent should be wide enough to allow me to swallow but I've still only been able to swallow liquids --in small mouthfuls--and lately I'm having problems with even that again. The thoracic surgeon thinks the stent might have become clogged but how can it when I've only done liquids? He says he thinks if I keep it in until January, which will be 6 months, maybe it will keep the esophagus from wanting to close back up so I'm hoping I can get it unclogged and keep it in that long--and that he's right-- and I'm still doing swallowing exercises and hoping just to get off the tube.

I am a year and 4 mos out from treatment, further than your husband, and I still find the not eating thing very hard BUT here are some tips

1. He doesn't have to do the tube feeding every 4 hours. I got my stomach used to three times a day; morning noon and evening, much as though it was a regular meal. Two cans of Jevity 1.5 at each and fruit and vegetable juices on top for lunch and dinner. I figure this way when I am able to eat more normally (if and when that happens) it won't be such a transition in terms of when I get hungry. I did this gradually--he should try to do the same. It might make him feel less dependent on the tube all the time.

2. He needs to learn that NO disability is a full time disability unless you make it such. You only remember you have a disability when you're confronted with a situation where you can't do what other people are doing. Bascially, this happens to me about once a day on a normal day because usually I didn't eat breakfast and had lunch at my desk on work days. But dinner is tough because I want to eat with my husband and can't. Travelling is really tough. Soemtimes it makes me totally frustrated. Sometimes, with a stomach full of Jevity, I can sit there and watch other people eat and socialize, enjoy the smell of the food for what it is, and be OK with it.

And there are so many other things I CAN still enjoy! Music, the changing seasons, my friends, my work, sex, etc. Food is just one way we enjoy life, and I certianly got a lot of enjoyment out of it when I could eat normally. If I never eat normally again, though, I'm damned if I'm going to let it ruin the rest of my life (and I'll never have to worry about dieting again!)

It's perfectly natural to grieve the loss of an ability, though. I also lost a beautiful singing voice to radiation and if I could get back eating or singing, I think I might take singing!

Your husband mught hate you for this suggestion but there's good data that it works and I've done it every day since my cancer treatments ended: try a gratitude list every day. Get him to look around and see how much he has. Do you have kids? Not me, we were getting ready to adopt before I was diagnosed, but no one is going to place even a hard to adopt kid with someone who has had two kinds of cancer. So of you have children, be grateful for that. We have so much to be grateful for just living in the country we live in where heat, medical care and clean water are readily available. There's so much to be grateful for once you start thinking ab out it. Be grateful for what you have and it makes it easier to tolerate what you don't have. Really. Because most of the things I am most grateful for I don't feel I "earned" (like being born in this country, having a loving family and great friends and a good mind), it's much easier for me to see that I didn't "earn" the bad things either, but why shoud I think they should never happen to me? I know this might sound like cockeyed optimism but it WORKS.

Antidepressants wouldn't hurt either.

And most of all, if you can, give him patience and time.

Nelie

Nelie, Amy,and Gary:
Thank you for responding I was and am really concerned about Gil- 30 years in the Army- one tough man who has never been ill before- but I think he is at his botton mentally.
I will try your suggestions. I know I have to start getting out of the house because he is bringing me down with him. Physically he is fine.

Jordan, I forgot to say in my last post that if he is "being a good sport" about you eating in front of him, I think you should. Mainly because if he is likely to never eat normally again, and he wants to attend social things where normal people are eating, he has to get used to watching other people eating, and talking, enjoying thgeir company, etc. without going crazy because he can't eat. You are the person he needs to practice this with.

I personally find it really hard when friends say they feel bad eating in front of me even when I'm saying I'm fine with it. If I say I'm fine with it, I'm fine with it, and I want the socail interaction that comes around eating together. I once arranged to meet a friend for lunch at a restuarant she loves in my town (and I used to love when I could eat) and told her I'd just sip on coffee while she ate. I made sure I fed myself a couple of cans of jevity before going ebcause it's mostly only hard for me to wacth others eating when I'm hungry and when I got there (on time) I found out she had gotten there early deliberately because she didn't want to eat in front of me (so she was already on the end of her meal)! But then we didn't have as much time to talk (it was winter and not a nice day for just walking around outside). And I didn't get to smell all the good food smells. I kind of felt robbed even though she thought she was doing something considerate.

Give your husband the choice of joining you while you eat or not. Tell him it's fine if suddenly it gets to be too much and he has to leave. But take him at his word that it might be OK because I think otherwise you may be unwittingly making things harder for him.

Nelie

Nelie,
I so understand how you feel. Even though I am able to eat, I am not able to eat like I used to. I prefer to eat at home. BUT, I decided that I needed to adapt to the "eating" world that we live in and found ways to conquer it. I also love the social setting that comes with good food and I LOVE to cook so I adapted........as we always do in difficult situations. It used to be painful for me to go to the grocery store, made me sad and angry. Now, I love it, I love looking at, touching, sometimes even smelling the food there. I transferred my love of food into a love of giving food.....if that makes any sense. Buying it, cooking it, serving it to my family makes me feel fulfilled. The smell of it cooking, the bustle of them at the table. My obvious enjoyment got them past being uncomfortable eating in front of me, although they are always quick to choose places when we go out that they know I will be able to order something I can manage. But it's routine for them now, my 12 year old casually says "Let's go to Golden Corral, mom does great at a buffet". And throughout the meal, they will tell me what tastes good and tell me they bet I can "handle" it. Consideration for me yet they still are able to enjoy. Getting to that point takes time but I'm there and loving it. I so hope your issues are resolved soon, I feel so badly that you can't eat more.

Thanks Minnie, Transferring your love of food into love of giving it makes perfect sense to me. I don't cook all that often but I really enjoy it when I do--love the smells and textures and love other people enjoying it! Holiday meals are a really big deal to me now because it's an excuse to cook food for others.....(and I don't have to worry about piling on the pounds myself like I used to!)

I could have written this same message. My DH is at just about the same place as yours. He had his surgery in Feb and the docs and therapists all have about given up on his swallowing. Just me still fighting. And there hasn't been any attempt at dilation or anything like that. I will be looking for a specialist in swallowing in January. I'm giving it a year with them and then we're going somewhere to get help. I can't accept that there is no help for my DH with no attempt made with surgery or some kind of procedure to help the swallowing. DH is also depressed, at times, and refuses to see a therapist, even though I found a great therapist who went through colon cancer surgery and lives with an ostomy bag and is a male and about his age. A good person to talk to, but DH refuses. DH does his feeding at night because he has a J-tube in his intestines and has to pump in very slowly. this frees up his day, but makes for a long night, and especially if he can't sleep, he gets up and unplugs and doesn't get all his nourishment. It's so frustrating. and I cry alot too. He said the one thing he would eat right now if he could was the new "bowl" from KFC with mashed potatoes and gravy and chicken and corn. He rarely even eats ice cream anymore. I get so tired of the fight.

This thread, from the beginning, has so much to say toward the eating issue for both recovering patients and caregivers. I hope people will read it several times. I want to add to the above that my husband [who is peg only] cooks a big breakfast every school day for our grandson and makes an effort to cook at night when he can. A few weeks ago, he made 3 meat loaves for the freezer while I was at work. Most days, he is in bed, and on those evenings, I will fix my dinner and if he is awake, go and eat in his room so we can visit or watch t.v. together. Often, he will time a tube feed at my dinner time so we can "eat together". This is our "new normal" for now and a way we can spend time together. You gotta find what works for you both. Minnie and Nelie, what great attitudes you have. It speaks volumns about your spirit. Amy