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