Good day to you all. I finally found my way back into this site and from what I have read this morning, I know I should have come in earlier.
I had my last radiation treatment the 2nd of May and started them the 17 of March with 3 scheduled chemotherapies during the radiation.
My cancer was (yes I said was) in the tonsil/tongue area on the right side of face.
The lesion was found when I went to a dentist to have new dentures made. What I thought was a sore caused by ill fitting dentures was in fact a invasive squamous T3-T4 cancer.
After induring the therapy I came home (oh, I had all my treatments at KU medical in Kansas City, Kansas and spent a couple weeks recouping at my family's home in Topeka)
I still can't eat. I did not have a feeding tube and felt (as did the doctors) that I would be ok without. I have radiation burns? or scar tissue in throat area with the edges of my mouth being sore too.
I am drinking all the Boost, Ensure and those kinds of products, but I want to eat.
I try to eat and before I put food on my tongue I am gagging or at least thinking about it.
Water and I are getting along fine, and I can drink ice tea.. not too cold.. but hot tea is a no no too.
I know this is long, and if it gets deleted so be it. I haven't anyone to talk to who has been
where I am.
I want to eat but without dentures (teeth felt like I had stuck a porcupine in my mouth when I tried to put them in Oh, I am just about over a bout of thrush so that is another reason I can't wear teeth.) I am finding it hard to figure out what to eat that will go down.
My tastebuds are just beginning to heal and I have been told that maybe I am rushing things. Frustration is part of the game right now. I have lost over 40 pounds and altho I had it to lose, I would rather not lose anymore.
Does anyone of you have ideas that might let me eat. My mother and friend are telling me to try baby food, but money is becoming an issue.. I don't have insurance and lost my SSI because of my sons death and being his beneficiary.. that is another story and will be included in a future story.. but until I spent down to $2,000 I don't have anything coming in. I did get it down the first of June.. but now am waiting on the powers that be to decide if I put any of the insurance in a numbered Swiss account of if I lived on it. As I said another story.
Thank God KU medical didn't wait to treat me.. that would have been another story.
So, please if you kind people would, I am lonely, scared and alone with all these questions and would love a response from you.
I go back next week for the next CT scan and to see my ENT that will tell me if all the cancer got zapped or if I need more treatment. I am scared, but know that I still have fight in me.
God willing I will be ok, if not I will handle what comes.

Thank for your help God bless you and Hugs from me,
Judy

Hi Judy,
First, about money, have you applied for SSDI? It is retroacactive to the date of your Dx. The claim will be based on fatigue and unability to work. They will pay as much as $1470.00/mo. I am assuming that you are fully vested in Social Security.

Thrush can make mouth sores seem twice as painful. It is critical to keep it under control. I was taking 400 mg of Diflucan a day. I developed a resistance to it so now I am using Nystatin. Eat yogurt with acidophilus in it. It helps with thrush. I also drank cranberry juice diluted with water (full strength will burn -you have to find your comfort zone) and that helped also.

I finished radiation just2 days after you started and I am happy to report that my taste buds have returned, I am eating almost anything I want, including tomato sauce, mild salsa, fresh fruit, etc. I have just recently been able to eat at restaurants. Be patient. It takes time to heal from the radiation. I worked in the field and I was clueless had bad it could get until it happened to me. The fact that you are able to maintain on Ensure and Boost and stay properly hydrated is a big positive. I had a hard time for a while. I lost 60 lbs - I actually tried on a pair of my wifes baggier jeans (a size 1/2 R) and they fit me perfect! But I am starting to gain it back. I didn't have a feeding tube either, although in hindsite maybe I should have gotten one. I was joking with the doctor last week to go ahead and order it! They are a little concerned because I look so "gaunt".
You will need to start with soft foods and work your way up. It is a lot of trial and error. People recommended baby food to me but I never did any of that either. Eventually you will find things to eat. And keep retrying things you had earlier that didn't work. Eventually they will. One of the first regular foods that I ate was a filet mignon cooked rare. It just slid right down. Another trick in swallowing - try to swallow before flushing the food down with water. It will almost always go down easier that way. I have to admit that my swallowing still isn't quite normal but it is definitely improving weekly. It just takes time, patience and experimentation. I totally know how you feel. I couldn't wait to get back to normal food after months of "Carnation Instant Breakfast" (Ensure and Boost made me gag). It was a good 6 weeks before I noticed the slightest positive turnaround after cessation of treatment. It sounds to me like you are doing great. Be patient, it WILL get better.

Hi Judy,

One rule of thumb I've read on this board is "one month of recovery for every week of radiation." Keep that in mind while you are healing. It doesn't happen over night and is so gradual you might not notice some of the changes for the better.

I understand the no dentures effecting your ability to eat also. Try cream soups, mashed potatoes (lots of butter and gravy) I also ate cheesecake from Sam's...left on the counter to room temperature no crust. But, please keep up with the Ensure and Boost. That is what's helping to keep you strong and healthy...you need the good things they contain. You won't get from other soft foods right now.

Most of this will fade and come back in time. Just don't rush anything.

Take care and welcome,
Dinah