David,

You are so on target. At least from our experience. Dan would crave foods and I would make everything he craved...sometimes I'd try 3 or 4 dishes at a time. And, one bite, or partial bite, and he and I would both be discouraged. But, that didn't really happen until about week 4 of treatment, so hopefully Michelle's hubby will be able to eat and enjoy for awhile.

When the going got really tough, Dan couldn't even handle the VHC for weeks as it was too thick and by the time he thinned it down enough it was 16-20 ounces instead of 8. So, he stuck with the Ensure Plus.

Michelle, not trying to discourage you, but if I had to do it all over again, I'd have not tried so hard to push food vs. calories. I threw so much food away. And, Dan got so discouraged each time he couldn't eat something I made.

I think some people are able to eat all the way through treatment, but it's a difficult scenario to plan for. You almost have to take that one day by day and the only thing I would do is have some liquid protein supplements in reserve. I'd have a variety. Dan couldn't tolerate Boost, but he liked Ensure. Some people love Boost. Many people, like David, lived on VHC.

Dan wanted variety, and I tried to provide that even with the Ensure. But, ultimately, the only flavor that he could tolerate was vanilla. When he and I finally accepted that fact, things got easier...and, it wasn't such a craze-fest at the super market or in the kitchen anymore.

It was not a fun time, because as the caregiver I couldn't understand when the issue was how "wet" something was or whether it was taste or texture. And, Dan had a hard time articulating why things didn't work. I still can't say I understand it. When things like ice cream or popsicles "burn" instead of "soothe"...well, it's just hard to understand unless you are the person experiencing it.

But, on a great note, there is very little Dan can't eat now. And, lucky dog, he gets to eat all he wants without gaining an ounce. It's a small reward for the grueling summer he went through. But, he's finding great joy in eating again.

The other thing we were advised to do was put in as many calories as we could before things got tough...so no skim milk or "lite" anything. It was a huge shift for our health and calorie conscious home.


Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.