To answer some questions on another post, I do not have a nutritionist. My RO's office has one, but she is not contracted with my insurance and so will not give me the time of day. I have been told I have to take in 2200 calories a day or 6 cans of jevity a day. At this point I am doing good to keep anything down. This stupid uvula that I have that is swollen is gagging me all the time. I can not even breath through my mouth without it moving around and touching my tongue. I will be talking to the Dr. about this on Monday, because i know that I can not continue this way. I WILL GET THROUGH THIS. Thanks for all you help and support. I feel like such a wimp right now. UGH.

Nutritionists, occupational therapists and physical therapists I found to be absolutely useless to me...but I was a health/fitness buff before this process. I threw a physical therapist out of my hospital room after my first surgery...the dumb "professional wouldn't" read the words on my notepad (jaw wired shut) and respect the patients wishes...and threatened me with a longer hospital stay.

I'm not the best patient by the way. Keep nutrition shooting up your tube, calories, calories, calories. Your blood work they take will keep them on the right track. 2200 calories sounds low to me however, especially during tx. I'd think more between 2700 and 3000 while your body is being "abused" as it is.

Good luck

Eric

There are some good yherapists out there. I could not swallow corectly after TX. Went to a speach therapist, they gace me some exercises to do. Worked well

just my 2C

Steve

I do agree with Steve though there are good therapists out there. I went through six years of speach therapy as a child to correct massive speech impediments...went on to a career where public speaking was a must.

Just want you all to know I have forced down two boosts today and half of a strawberry shake. I still can not keep the down the Jevity when using the PEG tube. It may be because I am not doing it right. My throat still hurts like the dickens, but I can deal with it for a little while.

Well there are good therapists and bad therapists. I laughed in the face of my so called rehabilitation therapists in the hospital after surgery who kept talking about shower seats and leg exercises after I had my tongue cut off. For those who read my hospital posts, they may remember how I handled it. I challenged the top dog therapist to a race up and down the stairwells of the hospital and with all my tubes and drainage pumps I raced down and up those stairs beating her by over two minutes. Like Eric I had only contempt for these weaklings. Before the cancer I would have just picked them up and shook them into reality, but after all the radiation & therapy & surgery I was reduced to just being fleet of foot.
Then and only then would they leave me alone.
Subsequently I have had 30 sessions of VitalStim swallowing therapy but with little progress despite hour long daily exercises.
Nutritionists I have found to be worse than useless, with their recommedations for ice cream, etc. Unfortunately, most of us are on our own in our quest to be healthy.
Charm

Angelia,

You really need to consider the CIB VHC which has 560 cals in the same size can. Less pain for the calorie goal.

Charm...it really is scary sometimes how similar we are. That was awesome!

David, Thanks I will look for that.
I did see the Dr. today and he took one look at my throat and he said "That lookd miserable all right". We did not do treatment today or tomorrow. He is going to look at my throat again on wednesday to see if we can start again. I did get some lidocaine. He asked me where i go my other cockrail and told hime his nurse did it. He had now idea she had given me a different cocktail than he normally recommends. YEAH, some relief is in sight. The PEG is getting easier and easier for me to use and I have actually kept down all the stuff I have put in it today. I will definitely try to fine the stuff with the most calories.
What stores would have the CIB VHC??

HiAngelia:
I live in Huntsville, AL and couldn't find it locally at drug stores (CVS) or other stores. I ordered on line @ Nestle Nutritional Supplements, first one, Nestle Store. It cost $59.99 for 24 cans and only comes in Vanilla. I mixed chocolate syrup or Boost with it. It arrived in about 3 to 4 days. The price sounds high, but actually it's about $2.50 per can and each can has 560 calories. There is no shipping and handling cost. Hope you like it.
Julieann
p.s. I lived off mine for months, then found out I was allergic to soy - just another one of my oddities.

Angelia,

You HAVE to order it from the pharmacy dept at a Walgreens or CVS or online. No one caries it on their shelves. I only paid about $32.00 at Walgreens for a case. Walgreens only took a day, 2 at the most to get in from the time I called them. Make sure you get them to order the right CIB as there is more than one but ONLY ONE WITH 560 calories. $60 seems way to high even 3 years later so check around and if you order it from Amazon the OFC can get some money back.

I drank that VHC stuff for a tad over a year post Tx just to make sure I was getting my 3000 cals a day.

YUMMY Vanilla!!! lol