Hello JoAnne;
For some reason that name sounds so familiar. We went for a commissioning of the USS Cheyenne during Thomas' first stint down there (about 10 years ago) and all went to a nice buffet by the Port, but I don't recall the name. It was excellent though!! He'll be calling towards the end of the week and I'll have to ask if that was it. He is not a diver but a torpedoman. After leaving the Cheyenne (it's currently docked, standard for a sub after the first few years out) he went back to school in San Diego, then Hawaii, then he went to work in the actual torpedo facility in Williamsburg, then all the way back to Seattle, where he was asked to join the USS Georgia (another sub). So now back to Norfolk!! You are correct, it's awesome down there.

I'm in the same boat as Jack, head chef for the house. The poor kids had a lot fast food during my treatment, not that Janet isn't an excellent cook, but bless her heart, working, caring for my needs, hauling me to all those appointments, being there every step of the way, and taking care of the house and the kids, left no time for her. I don't know how she done it all! Yes, she cooked some, but not like we normally do. So I can't wait to get back into it. I actually got up this morning before they did and made some Strawberry muffins for their breakfast. Everyone enjoyed them!! I even tackled one after everyone got going today. The first few bites (micro bites) I really got some flavor and then my taste buds lost it, but it was great. Took an extrodinary amount of water to work it down but well worth it.

Thank you for the suggestion on the book. I had found that book on Amazon when I first started attempting to eat again a couple weeks ago. Janet went out searching for it at the bookstores but nobody actually stocks it. I have been paranoid to order it without seeing it, thinking it was probably just basic soups, etc. Also, thanks to you mentioning it I went into the OCF links and explored some more this morning. Found a whole world of unexplored territory!!! What a website here!!

Regards,

Steve

Hi Steve,

I'm glad you went exploring on the links on this website, it's quite an amazing wealth of information. We ordered that book through the products page link here and it came fairly quickly. Not too expensive, under $20 as I recall. I'm viewing it as a procedure manual for the cooking challenged, but there are also good tips to improve swallowing in general so it's been helpful. There's a nice variety of recipes in there other than soups.

Those little bites of muffin are big victories, and I'll bet it did taste good. Jack's speech therapist encouraged him to experiment - mind you that was after the video swallowing test that determined where the food was going and that it was safe - but he really took that advice to heart. The first time he hacked up something that didn't quite make it was a little scary but you get over that. He still "repositions" his food as needed but less and less. Small bites, small meals, lots of water, it's all part of the recovery process.

Your son has had quite a career and you're clearly very proud of all your kids. They're wonderful motivation to get through this aren't they. You sound like you're doing well, hang in there and good luck with the ENT visit in a couple of weeks. There's a lot to be said for a positive attitude. I believe that continues to help Jack.

Regards JoAnne

I also suggest you don't give up on something if you choke on it in the first couple of swallows. I found that if I coughed it up and then went back tried again, I could often eat it. Like my muscles were saying 'oh, now I know what to do with it'. As Joanne say, very small bites and lots of water or milk or any other liquid like apple juice that you can drink. I also found applesauce helped get many things down. Keep trying, it does come back.

Take care,
Eileen

Diane;
I got brave tonight and tried your suggestion of the chicken pot pie. I baked two of them. Janet asked why I was fixing two and I told her that I was going to prepare them and then have one for later, as I didn't want to microwave one later due to the crust not baking. Then I grinned and said, "like I can swallow that crust anyway." We laughed about that!! Well, the crust did not work, but glad I fixed two of them. There was a little discomfort (a small price to pay) but I ate both of them!! (with plenty of water of course) Another wonderful victory!!!

Thank you all so much for the "experiments" and advice. It is sincerely appreciated.

Steve

Steve, I don't think I could eat anything by mouth for about a yr or so but yesterday I faced my biggest challenge. (A peanut butter and Marshmellow fluff sandwich) I was determined that it was going down. Thanks to a half gallon of milk the mission was a success. Good Luck to you!!!
Mark D.

Steve, I find that anything in a casserole with cheese works well.

Try angelhair pasta with a tomato\spinach sauce [+ground beef if you can tolerate it or pureed tuna or shrimp] Amy

Way to go Mark with your "mission" on the "fluffer nutter" sandwich. It's amazing the things we used to take for granted are now milestones!! Yes, minniea, it seems that any noodle base (as long as they're small or chopped up fine) goes down pretty fair at this point, even with cheese. I still get some burn, even with lots of water, but as JoAnne, Eileen and others have mentioned to me it's all about positioning and taking proper amounts.

JAM, the angel hair pasta is working. Janet (my wife) actually made some the other night. She sat a seperate bowl aside just plain in case I couldn't handle the red sauce (even though it was really mild with very little spices added). I got through it!!! That was a victory due to the red sauce. Most tomato or acid bases are still very irritating and flare up the sores still in my mouth. (all trial and error at this point) Man it was a great feeling.

Now, for the biigest step yet!! I actually bought into having Mcdonalds with the kids tonight!! Janet said she was treating them tonight and asked if I wanted to try something. (during week 3 of radiation I ate there about every meal as it was the only thing I was getting flavor out of) So I gave it a whirl. Well after about 7 or 8 fries my son ended up with them, and the family was done eating long (about an hour) before I was (naturally), but I thoroughly enjoyed a double cheesburger!!! With the exception of about a third of the bun I broke that thing up in little pieces and had a blast with it!!

I feel real positive and blessed that so many things are working for me at this point. It sometimes is a challenge mentally due to the amount of time involved and the amount of water needed to have a meal but it's a small price to pay to still be able to eat!! I'm still struggling with getting enough calories by mouth though. It feels like I need to eat from the time I wake up until I go to bed and it's still not enough, so I'm still using the tube some. Does/did anyone else feel this way?

Thanks,

Steve

Steve, I'm so happy to see you doing so well. I think it is fantastic that so many people on this site are less than a year out of treatment. You can offer each other so much assistance and support. People reaching out to help one another is amazing and to go thru what oral cancer survivors have to go thru is so hard on your own. Thanks to Brian we have created a wonderful little family here. There is one member that I think needs our help right now, It is Tim Stoj-- First he thought he was going to die and now he thinks he's a handsome ladies man! Well tim if your doctor prescribed you some anti- depressants do me a favor and give me that prescription!!!!
Steve keep posting enjoying your input. By the way even after 7 yrs I still have to force myself to drink 3 or 4 ensures to maintain my robust 160 lb. frame.
Mark D.

Hey JoAnne;
We talked to our son a while ago and he had it out before I finished the question! It was Captain Georges that we ate at our very first visit down there. I remember the food much better than the ambiance but you and Jack are right, the food was very good. It will be worth another visit on our next trip down there. Thanks for reminding me of it.

Mark, the comment about your daily ensure intake is something I'm beginning to relate to. It just seems like a true challenge to get enough by oral intake alone. Sounds like that can continue to be an issue. Thank you for the reply and insight.

Steve