I was still on the downhill slide at 3 weeks post Tx and I don't remember eating solid food until about 2 months post Tx. I didn't have a PEG so it all went down the oral cavity. My taste buds started to recover about one month post Tx and it slowly improved over several months. Like Kris, for some odd reason, I never lost the "coffee taste bud" and even though I couldn't drink hot coffee, Hagen Daz coffee ice cream and Carnation Instant Breakfast Espresso worked well for me. I had a lot of jones for different food items and my dogs gained a lot of weight when I discovered I couldn't eat them. You have to keep experimenting and also, like has been said, retrying things as this is a very dynamic time in recovery and things will keep changing. The first solid foods I remember eating were very rare filet mignon. Several weeks later I was able to eat pizza and salad. Pastas are still my favorites, but I have developed a liking for In-n-Out burgers and fries. I also found that carbonated beverages aided swallowing a lot more than plain water. I drank a lot of soda and carbonated water with lemon in it (and still do).

My experience was that different taste sensations came back at different times salt was the first and sweets were the last. Be patient.

Kellie,
Tell her not to worry about working with the tube, it's amazing how we can make it all work out. I coached all my teams with the tube, I just tucked it into the waistband of my pants. Some people taped it to their stomachs, which is another great idea. I would do a can before leaving for work and take a break at the half way point and either go sit in the car or in the bathroom to add some more into the tube. I used a syringe to feed, I didn't hang a bag or anything like that. I would put the tip of the syringe in the tube and fill the tube with food, letting it go in however fast I wanted it to. Lift and lower the syringe to slow or speed it up. I spent days at Busch Gardens while I was still dependent on the tube. I have always used a back pack instead of a pocket book so a few cans of food fit just fine. I also always kept some in my car for emergencies. It's sort of like packing an adult diaper bag, you have to think ahead!
Your sister can return to work with a tube, it just takes some simple planning.
Minnie

Kellie-

I'm a surviving caretaker. When my Uptown went through treatment, he had the peg but could NEVER use it. Like Cathy G - he just pushed through it. Honestly one of the most difficult aspects of the tube was its appearance. Who in the world can feel "normal" with this huge hose hanging from their abdomen? It is a cruel reminder and Ed retreated from all activities because of the old tube's tendancy to leak, pop the top and the smell that goes with both. We uesd Sof Wick IV Sponges around the base of the tube to absorb some of the oozing and promptly sprung for a MIC Key. Go seach out on Baxter's website and ask her doctor to write the Rx which will include the size (CM and french). It's like a button that has this is the cool part - a locking top AND snazzy attachments for meds/entral feeding etc.

'Made a world of difference on Ed's perspective. He had no choice but to eat even when it tasted like poop but he did have a choice on the button. He was like a different person and I really believe not having the hanging peg was the first step to "normal" and it really rejuvinated his quest to eat whatever it took without hurting so much.

Hang in there! I'm so excited she hates the taste of food - because that means she CAN eat! Send her our encouragement and love, too!

Susan

Hi Kellie,
I sent you a private message. Do you know how to get them? You don't have a personal email listed in your profile.
Minnie

Kellie, I found that eggs (poached) on heavily buttered toast (soggy with butter) worked well. Also, macaroni and cheese (frozen, then microwaved), some soups, Pepsi, worked also. No milk for me and I couldn't drink coffee, wine, beer, scotch, or anything else fun. Just water, Pepsi, and occasionally some juices. Now I drink tomatoe juice and prune juice, too. Fish also worked well, especially oily fish like salmon. Also used tarter sauce, catsup, beef broth, anything to moisten the food and help it go down. Also, don't understand the desire to get off the tube so quickly. I used mine for 5 months after rad stopped before I got it out. Also worked during and after rad with the peg in and had no problems. Just went to a private room and fed myself through the tube. Even ate at my desk if I thought I would be uninterupted for 10 minutes. So, its no big deal. Tell your sister to not worry about it. People will understand. Just tape it to the stomach and off you go. Just have to bring tape with you to retape it after feeding. God bless.

Wow! Thanks for all the good ideas. This will give Julie something to chew on. Pardon the pun. Thought I would give her something to chuckle about when she comes here to read.

She's trying spaghetti O's for dinner. Last night mashed potatoes and gravy went OK. She said that she was more interested in the gravy than the potatoes. She had tried baked potatoes and that did not go well.

She has replaced one meal with real food. That is great news!

Thanks again,
Kellie

Potatoes didn't taste well for me until more then a few months after radiation. They had a real dry, papery feel in my mouth. They are fine now but it took some time. Does Julie like French Onion Soup? I ate TONS of that, still do, and did long before cancer paid me a visit. I also put cheese on everything now, melted, it helps me alot.
Minnie

Cheese has become my favourite too and I have a slice of it with the wheatbread for breakfast every morning. To make it easier to go down, I put sliced tomatos on top of the bread together with a bowl of cereal. All this stuff tastes normal and lights up my day with a full and nutritious breakfast. I won't feel hungry for 5 to 6 hours until I have lunch. What I am a bit worried is that the cheese may increase my fat content in the blood. 3 years post treatment now, I still miss the sweet taste but other than that, most food tastes fairly normal to me.

Karen

I'm eighteen months out from radation , still no taste, salvia, and I never get hungry. I keep hoping one of these days something will change. My husband and I use to enjoy going out to eat.
Mary Lee

Thanks Minnie and Karen. Cheese is a great idea. Julie has been adding powdered milk to just about everything to boost the calories.

Mary O, just to let you know Julie does not have an appetite either. That is one of the hardest things for her. She feels full all the time. She says that as of yet she does not have any cravings for food.

Yesterday she consumed 600 calories from food. Wooohoo! You go girl!

Kellie (Julie's sister)