Taking a slightly askance view, and ignoring the weight loss, what is truly wrong with existing on the appropriate amount of Ensure (or other meal replacement products) for an indefinite period? Perhaps supplemented by fiber.

I know it's not normal not to eat, but in many senses we (even the caregivers) are no longer normal -- I'd be consulting the dietician/nutritionist, because I'd be more concerned about the weight loss consequences than the lack of solid food consequences.

I can hardly believe I'm saying this, but as much as we may dislike Ensure because of it's links to our ordeals, it is quick and efficient, requires no preparation or special storage, and if one can't taste it (or doesn't mind the taste), where's the real harm? The math for daily caloric consumption is easier than typical kitchen caloric math <grin>.

Pete

Living on Ensure does not equal weight loss. I have lived on it for just less than three years, and lost almost NO weight. If he is losing weight, he isn't drinking enough of it. Switch him over to the PLUS flavors that have 350 calories per can instead of 250. And buy the generic at Wal Mart - its 40% cheaper and identical.

Take a can of good vegetable soup, blend it on high until it is completely liquified (add water), and mix it with Ensure Plus. There are no meal replacement liquids that can completely replace many of the essential nutrients from food. Ensure and Jevity (same company)come pretty close.

If he won't eat solids, buy a blender. If he won't drink enough to regain a healthy weight, confront his psychologist with that fact and ask that the issue be addressed ASAP. "Waiting" till things get back to normal is NOT ok. Things won't EVER be back to normal. Pour on the pressure to him. Don't worry about 'eating', worry about weight gain and health. He is hiding and shouldn't be allowed to. He is angry and scared. I hid for over a year waiting for the clouds of all this to lift. I'd be happy to talk to him. Many others here would to.

The hard part is over, but the work is not done. Tell him from me that Ensure will keep him alive, but will NOT restore him to health and vitality - no matter how much of it he drinks. Be strong. Be firm with him. Send him here. Tom

I agree with Tom. I lived on Ensure from Walmart for over a year on a PEG, that coupled with blender drinks and way too many canned peaches. My weight stayed on once I got on the PEG. It's a function of calories per day. But with a willing attitude, I expanded to poached eggs, mashed potatoes, baby food, pureed blender stuff my wife would make.... and as time went by it got better and better. But you have to want to do this, I'll be the first to admit this isn't an easy transition. And I still today have to rinse almost everything down with tons of water....the downside being that I am often full of water before I'm full of food. I have a local survivor who is now 8 years out and lives off of blender drinks only. This is by choice, he isn't willing to try, and is satisfied with the way he is.....

Thanks for all the ideas and support. His weight isn't continuing to drop, fortunately, but it's just way below what is healthy looking (in my amateur opinion). He mentioned last night that his reluctance to try food is rooted in his attachment to food as a sensory experience. He is a former chef with highly refined senses of smell and taste, so every time he tries food he once loved and it tastes terrible he feels like abandoning it until it's perfect again, which he's starting to agree is not great for his health. I will pass along your suggestsions. Last night, I reminded him again about what a great resource and community this forum is. I hope he will soon give it a try. He is truly a loner type who is inherently leery of organized groups, esp. support groups, but he says he's coming around.

I should mention that we're separated. After his treatment, I found out he'd started sneaking cigarettes and we had just had a baby midway through the treatment. That wasn't all that was wrong with us, but it was the straw that broke the camel's back. I couldn't fight for our marriage anymore. I love him like family, though, and want to support his recovery so he can be a father to our daughter. I wonder if there are other couples like us out there? I should probably post to the caregivers forum.

Thanks so much for your support--
Jennifer

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Former caregiver to husband who is in remission from Stage IV tonstillar cancer (dx June 04)
T2N2bM0
3 cycles induction chemo, followed by 7 weeks daily IMRT with concomitant chemo, then selective neck dissection

Jennifer, there are 2 things that I'd like to address in your last post. I can't tell from your posts how close and communicative you and your husband are, but if you do communicate, then please pass this on to him: Dear Jennifer's husband: Because of your culinary training and your experience with this disease, you have the oportunity to make a HUGH CONTRIBUTION to those of us who are also battling Head and Neck cancer.Caregivers [like me] are searching 24\7 for ways to augment our loved ones' nutrition, in a trial and error fashion with alot of tears involved. Cancer patients,like you,are struggling daily to find a way to get the nutrition they need and to satisfy the sensory pleasure associated with food. Altho I'm not a Chef, I owned and operated a Gourmet Cooking School years ago, and am a pretty good cook, and I challange you to help find new recipes and presentations to get people going eating again in their "new normal way". If you take this challange, I will bet you that you will start to feel better[and eat better] soon.
Jennifer, the caregiver's forun would be a great place for you to unwind. Being in this position is a tough job and there are many people here who can relate to your anguish. Just remember , you are NOT alone. Amy

Jennifer,
I am almost 8 weeks out of radiation, 33 imrt with 3 cisplatin treatments and am almost 4 weeks removed from a radical neck dissection and my next goal is to get this feeding tube out so I can really begin my recovery. I try some kind of food every day some works some does not, I do know that I try something, anything three times a day some works some does not and when it does not it is very dishearting and some times drives me to tears( if I was not a teacher I would have liked to be a chef)but your husband has got to try and push daily and never let up, failure is part of the ritual but so is success. The success may be small but they built up. Keep pushing your husband in a positive manner, my ex is a cancer survior 16 years ago and she is my best friend , my rock and biggest encourager. Keep pushin' my dear.
Lenny

Amy, I will share your "letter" with my husband. We are in close communication esp. because of our baby and see each other every day. You are doing a tremendous service by writing in this forum in the midst of what I can only imagine is an emotionally challenging time.

Lenny, you have a great attitude and it is very heartening to hear about your relationship with your ex. Thank you!

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Former caregiver to husband, 42, who is in remission from Stage IV tonstillar cancer (dx June 04)
T2N2bM0
3 cycles induction chemo, followed by 7 weeks daily IMRT with concomitant chemo, then selective neck dissection

Hi Jennifer --

The important thing to convey to your husband is that FOOD IS MEDICINE. This is posted on the OCF web site and also, was hammered at my husband by his hospital nutritionist, both his oncologists and his ENT (who herself had HNC 15 years ago and is a survivor). He needs to take his "medicine" in order to recover. It would be great if he would try to move beyond the packaged formulas and try things with more protein and fiber, like certain mild fruit juices and fruit and vegetable purees, or very soft scrambled eggs (perhaps with added milk and cheese). For example, I made Maryland cream of crab soup for my husband and put it through the blender to make a lovely puree that would be acceptable served at any restaurant. So he doesn't like soup -- well, it's medicine, you don't have to LIKE it, just TAKE it!

And try to make him understand that things can get better but he has to experiment and push the envelope. Does he have any sense of taste at all? If so, what can he taste? Can you build on that to urge him to branch out?

I should add that not everyone ends up unable to taste or enjoy foods. Taste can return, slowly for some, more rapidly for others, ditto the ability to swallow more normally. Your husband should have an evaluation by a speech/swallowing therapist and get exercises prescribed to improve his swallowing ability. Quite frankly, this should be a part of every HNC patient's routine treatment and should be asked,nay, demanded, if not offered. (Both our two moderate-sized local hospitals have the capabilities to do these tests, so it is not limited to large CCCs.)

It can be a long road back but you have to take that first step and not just stand at the curb...

Gail

Jennifer,

I also enjoy cooking (and eating!) and found radiation and the months following to be a horrific challenge at mealtime. I didn't have a PEG and was determined to try to keep my weight up as much as possible. As frustrating as it was, I would regularly scour every section of the grocery store looking for things that were soft enough and moist enough so that I might have a chance of getting them down my throat (after numbing my mouth with the swish-and-spit stuff). I know it's not a sensory delight to have to go through that kind of process at mealtime, but it was a truly pleasant surprise when I gradually began to find that my taste buds were coming back, and eventually my salivary function improved as well. It was a welcome relief when I could finally go out to a great restaurant and order whatever I felt like without worrying about whether my mouth could handle it and how it might taste.

I hope your husband can recognize that eating soft foods will at least help his swallowing function recover and possibly enhance whatever nutrition he is getting now. Hopefully he'll start to see improvement and get back to the point where he can really enjoy eating again.

Cathy