Hey Tim, Everything is going good for me, how about yourself? Its been awhile, lets see, almost 6 weeks out of treatment, WOW!!! Sounds like a long time, but seems like yesterday. I am still fighting that damn "trush" the docs have tried 3 different meds on me, in fact i got my 3rd one today, so keep your fingers crossed. Other than that, i really cant complain to bad, i try different foods and havent found anything im crazy over yet ( of course, it could be the thrush that is keeping me tasting correctly ) Im not sure? I go in on the 7th and 8th for the blood test and CAT Scan, a little nervous about that, but im very curious to see, if they can tell me, im done or what? The scarey thing about all this is, at the very first, they never could find cancer, they had to do surgery first, so what makes them so sure, i still wouldnt have it, by the blood work and CAT ? anyways... I still have my tube, i keep losing weight, so until i can get the eating thing going full blast they want it to stay in. So enough about me, tell me how you are doing? Are you feeling ok? Are you eating? How is the depression? I will look forward to hearing all about your recovery

Linda,

I'm doing OK. My rcovery is slower than I would like. I still have a sore throat/tongue. The ENT has scoped me and said everything looks fine so far. I have radiation burns on the base of my tongue (tumor area). Hopefully that will go away soon. I feel a lot better mentally since our return home to GA. I'm eating at least three meals a day and having a can of boost plus or carnation VHC daily. I'm not losing anymore weight but I'm not gaining any either. The problem is taste, I still can't really taste things yet. I think when that comes back so will the weight I hope.

I hope you get over your thrush soon. I'll think good thoughts and pray for you during your CT/bloodwork.

I'm glad things are going good for you.

Tim

Since i was on reading the response from Tim, which by the way, congrats on being home! Wow, i bet that is a relief in itself. Now for the update...I tried "Olive Garden" today, first with the salad, yuck!!! It was bitter (normally i love their salad) then the Chicken Parmisan, double YUCK, it had a horrible taste! But i am glad to inform you, the Peach Tea was wonderful! I drank 2 glasses. Then that little mint you get at the end of the meal, before they were heaven, now...hmm lets just say they were ok! So next time we are going to try Red Lobster, i will let you know how that tasted! Have a great weekend everybody.

Tim and Linda,
It took me quite a while before things began to taste good again...much longer than six weeks from the end of treatments. The first thing that I really began to enjoy was chocolate milkshakes that I made at home with Homemade Vanilla Bluebell ice cream with chocolate Hershey's syrup. Then I began to be able to taste salty things and lived on matzo ball soup two meals a day for about a year. I kept the feeding tube for 10 months, and constantly supplemented my diet with chocolate Boost, which, by the way, I still buy by the case at Sam's, even though I can eat most anything. For me it makes a perfect snack when I am hungry and it is so much easier to swallow than most other snacks.

Good luck guys...be patient and keep getting better.

Danny G.

I think I have tried all my favorite foods and I can pretty much taste the first couple of chews like it's almost supposed to taste. To my surprise I had a Wendy's single Classic which is real gooey and it was actually pretty tasty through out. The best so far is my wife's veggie premivera with red & green peppers, onions, mushrooms, artichokes and tomatoes served over a bed of rice with optional shrimp. Rice and shrimp are OK but the rest is quite tastey.

I still keep eyeing those Toco Bell commercials even though I hated that stuff before. Oh well.

Linda,
I think you are ordering the wrong foods at Olive Garden. You want food that have lots of sauce (not red) and lots of moisture (not chicken). While I have never eaten at Olive Garden, I imagine they have lots of pasta dishes in cream or olive oil sauces that you could taste. Maybe try an appetizer size portion of a couple of items. You also want to stay away from anything aciditic. 8 months out I had my first lobster and it was delicious, especailly the claws. I never did much like the tail meat. Good luck and keep trying. Don't get discouraged. Go with friends and sample items from their plates.

Take care,
Eileen

Hey everyone, its been a long time since i have been on here, hope everyone is doing good! I have a question, I want to remove my tube ( because i am EATING now and drinking on my own ) my stitch that held it in place broke the other day, and it seems like it is coming out anyways on its own...its getting longer, my question is, how long is this tube? Can i pull it out? Why is it starting to make my stomach sore? Why is my stomach seeping weird stuff from around the tube? I go into the doctors tomarrow, but i would rather pull it, than let someone else do it, haha yep im a baby, it just scares me if someone else even barely touches it!!! So has anyone pulled their own out before? Oh and for another subject, there is a nother question, i have had my CT's and my blood work, i quess to see if they got this or what??? I dont understand what they are suppose to be seeing here, cause when they discovered the cancer it wasnt by the CT's or the Pet's or the bloodwork, it was by surgery cause the other things didnt show anything, so what makes them so sure it would show up now on them? Just a little concerned i quess and confused????

Linda,

Welcome back. Glad to hear you are eating, good for you. Do you have any lingering side effects?

My tube came out really easy, the Dr just snipped the stitch and then pulled it out. There are a couple of different PEG tubes out there, so yours may not come out the same as mine. Maybe you can check with your Dr and pull it out yourself in the Dr's office.

I see your point about your scans...maybe just to confirm you are cancer free

Linda - Please don't pull your peg tube out yourself. It sounds like yours would be safe enough to do so, but peg tubes can be very different. Many have a 'bulb' of saline on the inside to keep them from coming out. These can be jerked out, but it is a messy and painful process. Some tubes just slip right out - requiring nothing more. Some need a stitch or two to close the stomach and start the healing there. Get some counsel on this one - you probably don't need the 'excitement' of doing it wrong!! Be strong. Tom J

Linda
I'm pleased to hear that you're doing well, and the PEG is ready to come out.

As you may remember, I didn't have one at all, so I didn't go through the removal proccess, thank goodness. I'd leave it to the DOctors, though. There are several types, some with bulbs, some with spiral coils, keeping them anchored inside the stomach. You may get an unpleasant and nasty surprise trying to remove it completely.

My sense of taste has come back rather quickly. It's only been 2 months, but it's about 70% of normal now. I've had trouble with post treatment infections (ear, sinus, throat and thrush, twice), so sometimes it feels like one step ahead, and two back, recovery-wise.

I've started to eat a lot more solid food in the last couple of weeks, and actually had english style fish and chips over the weekend...it was fantastic!

I've discovered that some of my favorite foods are just non-starters now; tomato sauces, salsa, citrus fruits...way too harsh for my sensitive taste buds!

The only way you're going to find out for sure is to try different things. I make a point of trying one new thing every single day; I just keep a toothbrush at the ready in case it doesn't work out, so I can brush away the burn.

Who'd have thought we'd feel this much better, so soon????

Take care
Wayne