Hi Everyone, back again to share my feelings, and look for a little advice at the same time. the first �light at the end of the tunnel� was finishing treatment. I did that successfully, and realize I should be happy about that, but now the next light at the end of the tunnel seems very dim and looks much farther away. The good is, I was able to go back to work after 5 weeks out of treatment, but it is not easy. I need about 10 hours sleep to feel halfway rested and generally feel pretty crumby. The biggest problem I�m having is with eating. It seems like such a hassle just to eat that I usually just try to get my calories by drinking about 6 Ensure a day. Is it ok to do this until I start to get an appetite and taste back for food? It�s depressing not eating food but even more depressing being disappointed by the taste of everything.

Hi, Mike
First of all, congratulations on your return to work - that is a great accomplishment!

When my husband was at about your stage post TX, he was still on a liquid diet. He used a combination of Enure and our own protein shakes. At that stage, our shakes didn't taste great - but they tasted less bad than the commercial drink - and the consistency was definately better. EricS has ideas for VERY healthy shakes, but here is the recipe that got my husband through the first couple months post TX. He would have one of our shakes in the morning and evening, and drink the ensure at work:
1-2 packet Vanilla Carnation Breakfast Essentials
2-3 cups milk
1 sooop whey powder (natural vanilla flavor)
** toddler oatmeal flakes
** canned peaches (only ingredients water, sugar, peachs) or pears
** vanilla bean ice cream for a special treat

You will need a blender to get a nice, smooth consistency. This is NOT a complete meal replacement, but if you have the Ensure in the day and a tasty (or less bad) shake in the evening, it will give you something different.

You will want to start the oatmeal and fruit a little at a time, and increase as your tolerence for the acid in the fruit does. Oddly enough, the taste of fresh fruit was one of the first things my husband got back. And to this day, he makes a breakfast of cooked oatmeal, milk, lots of fruit, carnation breakfrast essentials, and even cinnamon and cloves if the fruit of the day is apple!

Wishing you the very best. I think you will probably start feeling more like yourself in the next month or so - you will still need a lot of sleep, but the good moments will get better as spring advances.

Maria

Congratulation on completing treatment.

I hear ya, being a chowhound myself. It takes time, and lived solely on canned nutrition or farina, eggdrop soup for a long time. Your appetite, and eating ability should start coming back once any mucositis, saliva production, taste buds, and nerve response to any damage done by chemo and radiation is partially or completely resolved, which I found some to be about the 3rd month post treatment, but not 100 percent back pre-cancer, and some do take longer, and never really resolve completely like dry mouth. I still have problems with salt, sweet, and work around it, but I eat everything..steak, bread, pasta, pizza...and can taste it.

There are ways to improve saliva, so improving that will improve taste. Treating mucositis, thrush, dry mouth will improve taste. Zinc may help improve taste, drinking lemon water, smelling lemons, citic candy drinking water before meals, chewing gum improves saliva, Milk coats the mouth and replicates saliva.

Taste involves more than just tasting. It also invoives sight, smell, hearing, texture, and memory to fully taste. I try to incorporate all this, and all the tastes buds by trying as many flavor as I can...salt, sweet, sour, bitter, umami to help. One day you may even want to go to a lunch buffet to try what you can eat, it may be cheaper. Plenty times I made a complete meal, and just threw it out cause I couldn't eat it yet.

There are prescription meds, OTC products that help improve appetite....Marinol, megase, corticosteroids, anabolic steroids, caffeine, wine, melatonin to name a few, but check with your doctor.

Hi there it's a while before taste comes back, do try to add protein shakes to your diet and mix it up for variety - it will help you heal and maybe stimulate your taste buds and keep trying little tastes of things. it's hard but you will have those moments of ahhhhh. congrats on finishing.

Thank you all for your replies, I will try these suggestions

Mike,

My issue has been chewing and manuevering food to swallow, as I have been lucky so far with not having to undergo radiation, but it is also a definite chore to eat.

I was a total foodie, and loved to cook and eat - the whole pureed food thing was just abhorrent to me.

I often need to use my finger to get food to a place where I can chew/swallow, and usually only avoid this by taking very small bites and drinking a lot of room temperature water, which means it (a) takes forever to eat; and (b) makes me full much faster. I eat far less (about a third) of what I ate before.

When I cook at home, I try and make something that can be frozen, so I don't completely waste it if I can't eat it, or can only eat a little bit. I have found it very satisfying to at least manage a part of it. I try new things when I have friends over for dinner as a test run.

While I still have half my taste buds, they are now out of proportion so food tastes differently, plus I bite my new tongue without realizing it, which is totally creepy when I figure it out.

I would, however, kill for a bacon cheeseburger to just bite into, sigh.

We should start a food competition for OC patients, like a special olympics eating decathalon - chugging boost, mixing smoothies, pureeing meat, etc. We could convince some famous chef to judge us. I can see it now....

Mike,

Hang in there brotha. Some of the reason you are feeling so bad is because of what you are putting into your system. Ensure is chalked full of soy and basically sugar, both not really fantastic for your just out of treatment body.

We "are" what we eat and that's just the way it is. Soy lecithins manipulate estrogen levels and not in a good way, men shouldn't really consume it yet sadly it's in just about every processed food.

Your system is probably still running really high cortisol levels due to the stress of the cancer experience, cortisol counteracts insulin and due to the high levels typically present in a cancer patient you are basically giving corn syrup to a diabetic chugging Ensure...57% carbohydrates from 22g of simple sugars.

Changing our mindsets from living to eat, to eating to live can be tough, as a former foodie (my wife and I owned an italian restaurant) and still an admirer of food, I live off of a diet that's over 90% liquid.

I tightly control my diet and I track my calories religiously. I have a special relationship with my juicer and blender and I've refined my diet to include plenty of fresh fruits and vegetables (frozen if I can't because canned are usually packed with syrups or preservatives), blended nuts, berries, farm fresh eggs, whey protein powder to name but a few ingredients. I make sure that I get certain percentages of good fats (poly and monounsaturated fats), proteins and carbs along with my calorie intake every day.

I help train amateur mixed martial arts fighters who do their sport in a cage. I make sure they are properly fueled and in shape to step in a cage and literally do battle. I feel the same preparations should be made for those of us that are literally fighting for our lives.

It takes a bit to adjust to that lifestyle and it really doesn't mean you have to go to the extremes I had to. I would be working with a good Speech/Language Pathologist and a nutritionist with experience with oncology patients to help with eating and nutrition issues, they really are important in the rebuilding process.

Keep heading for the light brotha.

Eric

Eric - is it the soy that gives it that consistency? My working theory was latex paint, but that can't be right.
Maria

feels right though right?

yes, if push came to shove I would still guess latex paint. I fear that I offended a nutritionist friend who worked for one of the larger companies making meals ready to drink when I mentioned my theory.