Ive been done with radiation for a month and I still can't eat anything other than boost shakes with benecalorie. While I'm not looking for nutritional suggestions I am seeking details. Constantly someone will reply to someone's topic, answer but leave out the details that make their answer comforting to the person who posted it.
Why, exactly couldn't you eat post radiation?
How long before you were able to eat normally again?
What was the process like and how did you get back to solid foods? Did you work up to it or wake up one day and could eat again?
I KNOW everyone is different but the absolute worst part of all this is the not knowing which makes comfort in the details.
Right now I have 2 issues going on (besides the fact I can't speak because of the amount of thick salvia). The first is kind of hard to describe and if anyone has had anything like this happen to them post radiation please share your details with me. At first I thought my tongue was getting stuck to the roof of my mouth and in my sleep I was ripping it off but now I kind of think I may be sucking hard on my tongue to the point of me waking up. I am not sure which but this makes the top of my tongue unable to tolerate the touch of anything. The top of my tongue is raw
I'm also dealing with my tongue seeming to have no clue what to do with the food once it is in my mouth.
I tried a piece of pizza last night out of desperation and besides the fact it tastes completely different then how it use to it was do hard to manipulate.

Just tell me now if boost is all I have in my future. I'm beginning to come to terms with the fact that my quality of life is zero.

John,
I wish you felt better, but I do not think you are coming to terms with the fact that your quality of life is zero, because you are reaching out.

Anyway, I could not eat very much for the first 4 weeks. I made myself eat through treatment so that helped my transition. Soft foods like pudding were too thick for me. Some soup I could eat, pureed really well. People brought over food. I wanted to say, "Is this for me? I can't eat it AT ALL." I guess it was for my husband, which was ok, he needed it too. Lots of things hurt my mouth & tongue. It was frustrating but I believed what people said about getting better. I worried about other things, but not about being able to eat again.

Yes, one day, don't know which one cause I did not write it down, I got up and went to the refrigerator and pulled out a casserole dish someone had left, and I slightly heated it, so it would be softer, and I just knew I could manage it somewhat.
Oh, it took me over half an hour to eat half a dozen bites. But that was progress.

It just very gradually got better. It took me a long time to eat a meal for months. I did not write that down either, so don't know exactly.

The tongue thing you described, I can't say I understand that. Might be because of lack of saliva, and it is dry. Can't say for sure.

I can't imagine me eating pizza at one month out for sure--you are braver than you know. Of course it will taste differently! Your taste buds are probably not working very well at present. They will improve over time. You probably don't have saliva, that makes it tough too. I started getting some back before I was at the year mark, but have much more now at 18 months out. IMO it is ok to be drinking Boost right now, along with trying small amounts of foods, easy foods to eat.

This reply may not be just right for you, but it is as good as I can do without making the post really long. Recovery is an exercise in patience (we're called patients, aren't we?).

Best,
Anne

Hi John of arc,
After we have been through so much we want everything to go back to normal right now. I still am on a peg tube in which they told me 2 months ago I would never eat again. I paniced and started to do a bunch of research. I was able to get another opinion outside my hmo who worked with my ENT and found another option for me. I just had botox shot into what they call bars (muscles that are hard as rock is the best way to explain it). This is day 3 and I can swallow water much easier, but I do understand I have to keep doing my swallow excersies provided by my speech therapist and this could take a couple of months to actually eat. It has been over year since I have been able to eat, but I use this site and have a lot of people to support me to keep me going. There have been days I wish I could just give up but realizing that it would be selfish of me due to all of the people who have supported me. Please just take time to heal and know you will be able to eat and listen to these peoples stories to give you hope.

Anne- thank you. That was exactly the kind of info I was looking for. I've noticed a change in my appetite too. Instead of having 3 boosts a day with benecalorie added, which was a chore, I'm now having at least 4 if not 5 or 6.
And as for the pizza- I just wanted to taste it, ya know? It was one of my favorite foods before all this happened and I was determined to get a bite down.
I just feel like i'm at a stalemate. Nothing is really getting worse but nothing is really getting better.

John. I have a colorful history similar to yours as I tried to recover from my treatment. In short, I ended treatment on May 27, 2011 and really couldn't eat for the next two fo three months. I did get some Boost down and some soup but mostly it was the feeding tube that kept me alive. I swallowed water every day to keep my swallowing muscles working but it was very painful and a real chore. In late August I started to puree my food and just did my best to "drink" a normal meal. It was another month before I could even try to eat, say, a bowl of cereal but from September on I started to swallow better. It was 3 full months of hell AFTER my treatment before I could eat even somewhat normally. I had the feeding tube removed in late September and have been doing better ever since.

Jon, I hurt for you. I am a VERY angry survivor. And I sense in you the need to get right down to it, so this is what I can offer re your tongue not knowing what to do. That is exactly how I describe my inability to swallow food. I just can't get most things (and I haven't tried much) to go anywhere unless I wash it down with water. First off, I want to remind you that I'm a bit ahead of you in recovery. And things HAVE improved. Even though I hate where I still am (still have PEG tube) they continue to improve. I had c couple tests done early this year and results basically were that my throat and tongue were still irritated fom radiation. This was 7 months post radiation. I FEEL your frustration. I have issues with liquids and food going up my nose. My ENT says my tongue just isn't working right YET and it's pushing crap up my nose. But he says my anatomy looks good.
So, I hope this helped some. There's probably a lot more I could tell you that'll come to me later. But, honestly, it has gotten better. Not at my pace and that's hard to accept when you don't have control like you used to.
Shoot me more questions if need be. Good to be here with you all finally. If only I had known about this website a year + ago. I might've done some things different.
-Wendy

And, Wendy & John, it is that lack of control you alluded to that contributes to our anger! All of us lost control of some of our most basic functions to this disease, such as eating food without having to do so much planning and thinking, or having to use a PEG. And so on . . . which is why I think it is important to find an outlet whereby we regain some control.
I am angry at times too, believe it or not, but I recover from that when I get busy with a project or do some exercise or take a walk.

It's a work in progress for me.
Anne

I checked the timeline Journal I kept for John. One month out of treatment he wasn't getting any nutrition by mouth it was all through the PEG. He was drinking water every day and the mucus was still pretty bad. The following is from the journal:

June 10, 2009 � I can�t believe it has been a month since I wrote anything in this journal. John is 8 weeks out of treatments today. John is continuing his slow recovery but doing (I think) a lot better. John is finally talking again, YEAH! I really missed being able to have �conversations� with him. His voice is weak but getting better each day. Thank God the debilitating mucus has for the most part gone. He is no longer taking the Zofran for the nausea.

I remember John having a couple of sores on his tongue that seem to take a while to heal. John had zero appetite for a while after treatments ended.

Please don't take this personally as I know you are ANGRY and frustrated. As a caregiver who worries about recurrence and losing their husband to cancer I find it offensive when you make statements that your quality of life is zero. A lot of us have lost friends over the years to this cancer and I'm sure those people would trade places with you in a minute just to be here.

Lets face it we are all on borrowed time - cancer or no cancer and all we can do is deal with the hand we are dealt and make the most of each day.

Wanda- I am sorry. Believe me when I say that I would NEVER wish this upon anyone - having cancer OR watching someone you love with all of your heart go thru it. I don't know if you read my introduction, but I've been where you are too. Too many times in too short a time! I am angry at cancer.
And I am angry at myself. After all, I am ALIVE. And so many others have things much worse than me. And I have a support system to envy and some people have no one. I am aware of how lucky I am and all that I have to live for. Hence the anger. I'm angry at myself for being angry!!
I'm not looking for pity - YUCK!! I KNOW that only I can make this better. And I will. But I still struggle every day with a slough of emotions, not to mention the physical pain I'm in daily, and depression and anger, unfortunately, is where I find myself.
If we can't be brutally honest on this Forum, then I think we're wasting a great resource. We all need encouragement. But some of us also need honesty. It has made such a difference already for me to read about others going thru exactly what I am. It's made me be a little easier on myself - those feeling of 'why am I not well yet?' and 'what am I not doing that I should be?' -questions that leave me feeling weak and angry at myself.
I feel that Jon is right where I've been and still struggle not to go. And, like I want others to do for me, I only want to let him know that I feel his pain and am here to share honestly with him. And hopefully help him cope. I wish I would've found this site a year ago.
Respectfully,
Wendy

Hi Wendy. My reply was to Jon who has asked many of the same questions over and over and we have all replied to him over and over with the same responses.

You, me, everyone is allowed to be angry. I am pretty stressed and angry waiting for the results of my husband's biopsy from last Tuesday. I was mainly responding to Jon saying he has zero quality of life. That is very offensive to those on the boards who have severe physical deformaties and limitations due to this cancer but always offer their support and information to all on these boards. I will respond no more. Have a good day - none of us are guaranteed our next breath.