I want to thank everyone who kept me from panicking. You were correct!

I've written several times about my husband Bob's difficulty resuming eating after tx. RO used one month increments to judge progress - if eating did not progress, at least slighty, to more challenging foods each month, further evaluation would be needed. Our medical team has been great and I had no reason to doubt their expertise but I was staring to worry.

The advice I received here convinced me to be patient and not panic. Suddenly at 14 weeks post-tx, some taste returned, and everthing changed. Bob no longer dreaded trying foods and is now eating a variety of foods and fairly normal portions. I'm surprised by how fast it turned around and want to give others hope. As you know, it doesn't all taste good but is manageable. We're very relieved and have cut back on tube feedings (have ENT & RO app'ts coming up and will discuss tryng to go without any tube feedings).

Also, turkey neck is hardening. Is that common? Lottie

so glad things have turned around.

i have read on here that neck hardening is normal but i have not been there, done that so will leave to others to comment on it.

best wishes and i hope you are having a great holiday, enjoying those foods he oculd not eat a short time ago

Hi,
Can you help me? What did you start him out on? I am six weeks out of treatment and can eat some very soft things and small amounts, but it seems like it will take forever. I see you said fourteen weeks, things changed and that is great news!
They tell me I'm doing great, but this task seems daunting and it is so easy to eat from teh tube, too easy, and I want off this thing.

Any ideas for a plan would help.

Thanking you in advance

Nancy

be persistent and patient ... but push yourself at the same time. it can seem scary moving forward but we must continue pressing on. eating is very important to work those swallowing muscles or they will actually quit working, so don't rely on the tube anymore than you have to.

soft foods, then like steamed veggies and noodles, then work up to things you have to chew a bit ... take it at your own pace but do continue moving forward so you keep things working

best wishes

Nancy,

At 6 weeks out, my husband could manage thin milkshakes (with protein powder), water, tea, and nothing else. Fresh mint leaves, steeped in hot water with honey, was one of the first things that he could taste. He had horrible problems with ongoing thick mucus causing choking and gagging (I think longer than average, if there is a average). He was always able to swallow but everything was a problem - the taste, texture, or dyness/stickiness bothered him. Applesauce, pudding, yogurt, popcicles - none worked for him. Later he started tolerating clear broth, then I added matzo balls to the broth. They are easy to get down and made with eggs, contain protein. Then egg salad (more whites then yolks makes it easier to get down). He could only manage very small amounts (spoonfuls) until recently.

SPOHC cookbook has a recipe for a savory custard (eggs & broth steamed in a cup). It's one of the easiest thing to swallow because it's fluffy and soft, but my husband did not like the taste. If you want the recipe, let me know.

It's an extremely difficult recovery. I kept telling myself - if the MDs thought healing was progressing, we'd have to be patient. You can only force yourself into eating to a certain extent. It's a complex process that we take for granted most of our lives. Let me know if you have more questions. Can you add a signature line so we know your dx and can consider your treatment. Lottie

Nancy, there are a few things you might find helpful.

First, the issue of desire to eat (appetite) by it self, radiation steals appetite. It is separate from taste (although inter-related). Only time will help for this but when it comes back sometimes it will be surprisingly strong.

Second, taste can also be affected by radiation sometimes going away entirely, sometimes twisting the taste so that food items you are familiar with taste like something else (and that something may indeed be pretty bad).

Third, is the ability to chew and swallow which means even if you have appetite and can taste you might still have problems with texture, and worse if gagging happens that can ruin appetite! Besides texture is slippery (I can't come up with a better word) which is not the same as wetness!

Fourth, sensitivity to spices, tartness, or other strong flavors usually a burning sensation.

Putting this all together: Before there is a return of appetite there isn't much you can do beyond just getting in calories any way you can. Once you have an appetite, then focus on any FLAVOR that tastes right and build on that. As an example, for me meat in almost any form tasted like it should. I used a baby food grinder to finely grind beef, chicken, and pork to a paste like form. I always needed fat or oil of some sort to make meats slippery enough to comfortably swallow. Usually, fats and oils are considered poor choices in a diet. For now I'd suggest forgetting that. Use good oils when you can but it is hard to beat the taste of butter! I also found eggs to taste pretty good but the texture is sometimes hard to deal with. Scrambled with lots of milk, butter, cream or oil to make them "sloppy" was a staple for me.

Another tool to help is the kitchen blender. You can take virtually any food item and throw it in the blender with milk, soup base, gravy etc. and convert it to the consistency of yoghurt. (Yoghurt makes a good base on its own) I was able to put most meals that we had as a family into the blender and eat with them. I am absolutely serious when I say I have put entire salads into the blender just to get the nutrition!

Season your food with anything that you like and that doesn�t cause pain.

I hope this helps.

Lottie:

Very good news, thanks for updating your husbands progress. I knew if given some time he would do better. Its not easy recovering from treatments and sometimes it takes many months before you really see improvements. Its always so encouraging to read positive updates. Hope you both are enjoying the holidays and continue to see more steady improvements.


Nancy:

Canned peaches cut very small served room temperature were one of my first foods. For me, texture played a huge part in my first foods. Many things can bother your highly sensitive mouth right now. Take it slow, it will take a while before you can eat even close to normal. A few other ideas are banana yogurt, pudding, won-ton soup, chicken noodle soup (only the broth and noodles), well cooked carrots (canned carrots work very well), soft scrambled eggs with cheese, and mac and cheese. Check out the menu/food section for more ideas.

Nancy,

Each of us will recovery at our own pace so don't think that if I started tasting some things at 4 months that you are going to as well. Heck you may taste a lot before then or much later or anytime in between. I thought I was doing better than most yet I really didn't get satisfied with my taste recovery until about 15 months post Tx.

Recovery is a long drawn out process that is more mental than physical so try to take it as it's dealt to you and know that you will recover a great deal from where you are now.