Cancer Survivors Network

Sounds like you are right on track. Glad to here it. Keep up the good work.

Al is a alittle more than a week after his surgery, drinking about 4-6 0z of clear liquids
Tomarrow we mover on to Soft clear liquids, and will stay that way until Nov. 10th when we
go for our follow up.

Keep up the good work.
God Bless.
Kath

Shelly,
hang in there until the 19th! We find out the 11th if my dad is a candidate for surgery... prayers for everyone on this site
kim

Thanks Kim!
I'm too praying for your dad that he will be a candidate for surgery and for everyone on this site.
Thanks so much,
Shelly

Thanks for the nice comments. I am able to drink liquids. One week after surgery the doctor had me to a swallow test, this is done by make me drink a awful liquid while they take xray images to see if anything is leeking. Everything went down the correct tubes i guess and then they let me drink Grape juice.

The grape juice was the first thing I drank that I enjoyed in a while. In fact i hadn't drank any liquids in months. Now i'm home about a month out of surgery and i'm able to drink anything i like. I can't drink too much though. I have been able to eat soft foods such as jello, pudding, ice cream. I did try to eat macaroni and cheese, but I think I ate too much. I didn't feel good for about an hour afterwards. I felt stuffed and with a desperate need to burp but I couldn't burp. that thought me a lesson, don't eat too much starches.

I have about 3 more weeks of the feeding tube and then, i'll start gradually reducing it and eating more by mouth. Right now, i'm trying to gain my weight back. All in all I lost about 50lbs. i weighed about 125 after surgery i'm at 133 now and gaining everyday. I'm hungry although i get all necessary nutrients through the liquid tube food. So, I try to nibble on stuff here and there. I don't think i'll go back to my regular weight, but I think I can set my norm a little higher than 133.

I wish you luck with all you have to go through... I'll keep you all in my prayers

God Bless
Luis

Luis,

You will know when you have ate too much that is just a feeling you have, continue to eat soft foods, nothing tough macroni and cheese is a good thing, we eat that too. just eat your 6 meals a day and in between like jello, pudding, eggs, not much with milk products it irratates jeff's stomach you will know when you have overdone. If I can help or you have any quesitons I am here as my husband and you had the same kind of surgery just not in two parts.

Lori aka MOE

Luis,
just read your posts! Wonderful news. It is so good to hear some good news on this kind of cancer. So many other sites only seem to have the doom & gloom responses. Now, don't get me wrong--I know the facts---and ALL EC folks need our prayers! I am glad you are doing well. It also sounds like you have an patient positive attitude that will help you continue to recover as well!

You also seem to be my dad's size! He has lost about 15-20lbs total and is about 135-8 now. We know he'll loose some after surgery (12/2 at DUKE)---so he's trying to gain weight. It is difficult to do when even ensure and soft foods hurt to swallow!

Keep us posted. You'll always be able to get some support on this site!
Kim

I just noticed your dad has a surgery date. That's wonderful news!
Continued prayers,
Shelly

Kim,

Did I miss a post? I see where you are talking surgery for your DAD? That is great? What kind and etc. What a wonderful Christmas present huh? Just know I am here if you have any quesitons, and remember you will need a pair of my BIG GIRL PANTIES, so i will have William ship them through FAITH FEDERAL EXPRESS, and they will be on doorstep (parents) doorstep on the morning of 12/2, Until I know what kind he is having I don't want to scre you but you need to be prepared for a few days in ICU, alot of tubes, ventilators, hatefulness, etc etc. I will be waiting for your reply.

Bill will you and Loretta make sure that a pair is shipped to Kim in time for surgery, I think there is some there with lace, and she will definately need a couple of pair. Make sure you bless them so that her father has a speedy and wonderful recovery.

Kim, remember this where there is FAITH, THERE IS LOVE, WHERE THERE IS LOVE, THERE IS HOPE AND WHERE THERE IS HOPE THERE IS FAITH.

kEEP up the posts

Lori aka moe

Hey Betty,

Why don't you change the formula in Layne's feeding tube. What's he got in there--Buttermilk or Vanilla Pudding? Seriously, try another formula with a different consistency. You're not limited to one, are you?

I know everyone's different, but I took a swallow test on the 4th day and had "no leaks". I was discharged on the fifth to recuperate further at Family House Shadyside. I ate a couple of tablespoonsful of Cream of Wheat the day I went home. The only problem Loretta had was cleaning the tube after each feeding. She mastered that in a few days. She had a device that looked sorta like a hypodermic needle. You could fill it with water. She finally realized that the easiest way to "unclog" the tube was to insert the needle directly into the "clogged" end and force the substance back up towards the larger end of the tube. From then on there were no problems. A "clog" is a "common curse".

I wasn't in a hurry to get rid of the feeding tube. Mine was small and inconspicuous under my clothing. So I would say, "Don't be in a hurry to get rid of the feeding tube, because Layne's "intake capacity" is going to be extremely limited, thus causing a weight loss". . The more "food" he gets in his system, the more quickly he will recover his strength and feel good as new! He appears to have a "large frame" so I'm guessing he will drop a lot of weight quickly. Moreover, don't buy a lot of new clothes until his weight stabilizes, buy yourself something new instead--you deserve it.

William W. Marshall
AKA "William66"
Virginia Beach, VA 23464

HAHAHA That's so funny...I won't tell Layne you said for me to go shop. He has been so pleased that I have NOT been shopping lately :) LOL

We won't get rid of the tube too fast, but we will certainly get it out asap. He hates the whole idea of the thing and the connectors come apart a LOT. I have no problem cleaning it--we get new bags each day so I rarely have to clean it. But it does come apart and leak a LOT. It's the type of tubing that is used by this company, and we are kind of stuck with it for three weeks or so. Doc thinks he won't need it after that.

Yes, Layne has a very large frame and hopes to lose about 60 lbs after this is done. We were in the process of weight loss when this cancer hit. We had both been on a "BIGGEST LOSER" program--me going from a size 18 to a size 8 and him losing about 80 lbs. So the doc just wants to make sure he has enough protein to keep up his muscle mass and has told him he is now cleared to lose some weight. He actually gained during chemo and radiation--because they told him to, and he had difficulty with his knees because he packed on about 25 extra pounds.

MD Anderson wants patients to wait for the swallow test as they found it limits the number of leaks they have. They seldom have a leak, so we didn't get to do it until today. We are very excited that he will get to swallow. Yippeeee....

Of course, it will be the FIRST time Layne is EXCITED about swallowing barium!

Hey Betty
Just a word - Congratulations - going from a size 18 to an 8 is quite a feat. It takes a lot of willpower plus some exercise to lose that much--mainly "get ups" and "push aways". You know by now that I lost 60# and haven't gained it back. I'm happy to be 205 - 215. Loretta starts to feel the roll around my stomach when I start to get up to 215. She says she's not buying anymore size 44 to 46 pants, and none of mine are "stretch"! I'm wearing a size 38 to 40. Loretta is going through some of our photos to put together a "before and after EC" file. I do declare she must have "enhanced" some of those photos. Was I that fat? Don't know how she managed to make my body fat from the head to the toes. My jaws were puffy. That must have been a day when I was "chowing down" on 2 jawbreakers or something. But as they say, a picture is worth a thousand words.

If Layne has felt fine until now, I see no reason to think that he will "spring a leak" today. One more day to give God praise. He always does His best work "from the inside out"!

Two things Betty --

First -- You might want to share with the others what on Earth Layne ate in order to gain 25 pounds.

Secondly - I would note the name of the company who made that "feeding tube paraphernalia" and write them a letter stating the problems you encountered. Furthermore, you should suggest to the doctor that he switch to a more "user friendly" brand for his patients. If he had to contend with it for a couple of days, he wouldn't hesitate to switch companies.

William W. Marshall
AKA "William66"
Virginia Beach, VA 23464

I would love to know how you lost that much weight, as I too am that size (18) and would love to get to a 14 or 12. What did you do to loose that much and how. Just share it would you

Thanks
Lori

Hi,
I lost all the weight by not eating. I was diagnosed with esophageal cancer I could not even swallow liquids. After loosing weight rapidly my doctor suggested I have a feeding tube installed. Thanks to the feeding tube I'm still here. I wouldn't recomend that diet though.

Hey Luis:

This is sometimes how the "chain" of thought gets interrupted. One person will post a reply, then another will answer that posting. Then along comes another, reads both postings, and answers the second posting, not the original subject matter. As a result of that, sometimes important questions go unanswered for that very reason. One person will comment on one thing and then ask another question in return. If we don't read "ALL" the replies, sometimes things "fall through the cracks". It's difficult to keep up sometimes. But we are all on here for one reason--to encourage and inform when possible so that others will not lose hope!

So, Lori, was really addressing her remarks to Betty in Vegas (see new clothes) posting. Both she and her husband had lost a tremendous amount of weight (on purpose) by counting calories and exercise. Lori said she wanted to get some weight off and had asked Betty how "they" lost it.

She has read your postings and she doesn't want to lose the weight the way you did.

Lori's husband Jeff was on a ventilator for over 10 days and almost died from lung complications after his Esophagectomy. I agree with you, the feeding tube is a "life saver" and no one should hesitate to ask for one. I would have mine again in a "squinate". I think that's somewhere between a second and a minute! Glad to know you're still doing fine. In due time you'll be good as new, except for the amount of food and type of food you can consume at one sitting!

William W. Marshall
AKA "William66"
Virginia Beach, VA 23464

Yes, Luis i don't want your weight loss program, thanks but no thanks, and William was right my husband almost died during and after surgery, due to the lungs, GOD wasn;t ready for him yet and so he gave him back to me, I am glad things are well, We too are doing good.

Thanks
Lori

Ots clear to me now. I'm sorry fir miss understanding. What kind of complications did your husband have. I'm having trouble coughing upmy flem because of pain and it seems like I'm getting more and more congested. I'm going to the dr. Tomorrow I also have a pain in the area of my liver. I hope it all clers up for me.

Luis,

Its okay sometimes when you have Chemo you get confused, and its called chemo brain freeze, don't worry I understand, my husband had problems with his lungs during surgery as his surgeon put it they were sick very sick, and it would be up to him, to pull through, not even 24 hours after surgery his blood pressure dropped to 50/30 and his oxgyen level was at a 40, so he was knocking on heaven door for sure, it was pretty scary they called in a specialist upped his ventilator and was on that for 12 days in ICU, we just said alot of prayers, and I talked to him all the time while he was knocked out, along with that he had such a bad sinus infection it also infected his lungs, we didn't know he had this when he went in doctor said it was the worse he had seen on a patient, his mother and I didnt leave the hospital for 5 days and 5 nights, because he wasn't out of the woods for at least a week, we had a pretty scary situation.

He too also has trouble with his flem, you probably are still too soon after surgery to be too worried but it will releave your mind once you go, i know it does ours.

Just let me know how you are

thanks
Lori