I am still not able to eat much because of dry mouth, pain, food sticking in my throat, food not tasting good, and lack of appetite. It is depressing and discouraging because, in other ways, I'm recovering quite well. Is there anyone out there who did recover the joy of eating? Also, is there anyone out there pain free? I'd appreciate knowing. The doctors just tell me everybodies different and that they don't see this much of this type of cancer to be able to tell me.

O to be pain free!

Love Chloex

Hi,
I am now 18 months post treatment. For the first time yesterday I ENJOYED my evening meal and I actually had a glass of red wine which didn't burn my mouth!
(woke up this morning with black teeth though!)
I seem to be unusual as the only painkillers I used was to gargle with aspirin before I tried to eat and some cocadomol which I dissolved and put in my peg before I went to bed. I used to have to rush to bed because it knocked me out for a while. So good to get in a few hours sleep.
I would say 6 months after treatment I took no medication- but that's just me- my dentist says I have a high pain threshold!
I look back and can't believe that I came through it all. Sometimes you don't see yourself getting any better. But think and try to remember what you were like-last week? Last month? You may need someone else to remind you that you are getting better,we are just impatient!
Keep Smiling
Anne

Thanks for your comment, Anne. I don't have a high treashold for pain so I have a post today asking a question about it. I'm confused though because you mentioned your peg and I thought you were off the peg?

Laurel,
I DEFINATELY enjoy food now!
I have no saliva, and have to follow every bite with sip of water to get it down but hey!
It does lead to some rather gross looking glasses at the end of a meal- i even manage to get floaty bits inside those bottles with a sports cap some how!
I do struggle with acidity still - vinegars, fruit acids etc. & the other tricky food is spice - but that's still improving.
Now, i'm not sure if it's all as it was before treatment as far as taste is concerned. Or if i've just adjusted to this new kind of 'normal'.
But i can honestly say i LOVE to eat!
I'm 7lb away from being back to my pre-cancer weight! I don't know if i'll make it back to what it was before because i don'tsnack gthe way i used to. It's not easy to eat on the go as i need plenty of water.
You'll get there Laurel! You may feel you're a way off now , but the body does adjust!

Thanks so much Chelle. I noticed you are a bit ahead of me as far as treatment goes. Can you say how long it took for your taste to recover?

Hmm...
At first it was sweet things that tasted good. Savoury/salty things just irritated my tongue. Too much saltyness can still irritate and make my mouth sore. I think the taste improved about a month after i started eating. So 4 months after treatment.
There are some things that STILL don't taste as i remember them - i can't drink orange juice cuz of the acidity, and cola is too sweet - as i've no saliva i can almost feel it rotting the enamel on my teeth. I drink mainly water now, and hot chocolate (it's amazing what you can eat when its washed down with hot chocolate drinks!) Milkshakes are good too.
As i say, i'm not sure if my body has just become used to the new way things taste or if they genuinely taste good again?!
But i do love to eat! & i apreciate that i am able to eat again as i went 3 months with nothing oraly but a few sips of water!
As you've probably gathered by now, we all progress with this at different rates and speeds. So don't be dissapointed with your recovery!

Hi there,
definatley had PEG out! Xmas 2006.
I managed a Xmas dinner-very soggy and not much turkey didn't taste it though. But was a great breakthru
Anne

Laurel, I now had surgery and radiotherapy 2 years ago, and the pleasure of eating is coming back only slowly, but surely.
My experience is to test a lot of different products, and when I find something good, I eat it until I find something else to add to my diet. I'm now eating nearly everything, but some tastes did not came back yet, e.g. fruits, but I keep hope I will be able to appreciate them again one day. But when?!!

Hi Laurel,
I have never lost the desire to eat - my only problem is not being able to eat. My food passage is toatlly blocked and have been on peg feed for the past eight years. I guess if one believes in reincarnation, I will start eating in my next life.
Take care,
Ananth

It's taken me a while to respond to your comment, because, frankly I'm not sure what to say. I feel badly that you can't eat and have been on the food tube so long. I quess, in comparison, I'm pretty lucky. You have a really good outlook about things. Is there any hope that someday you'll be able to eat again? My thoughts and compassion are with you and I wish you the best.

Hi Laural,
At times I find it ironical that people who can actually eat normally refuse to eat - citing various reasons and here I am wanting to eat something but cannot.
However, I do not feel too bad anymore as eight years is a long time to get used to the idea that all my fun days of eating, "smoking" and not drinking are over. I am so used to this alternate life style, that I dont let these things bother me any more. The pegtube has just become a part of my body - though I now use a new kind of a tube ( well almost a new kind) which is a low profile peg. It fits flat on the stomach and all I have to do is attach the top when I want to 'eat" or "drink' something and the detach it. I keep one tube in my car, one in my pocket an a spare at home.
As far as eating in the future is concerned - I do not even se a glimmer of hope as I have no plns to spend any more days in a hospital room and secondly the doctors are not sure if the new passage will withstand due to all the problems I have had and then also that would require skin grafting which again means a lot of taking care of. Since I mantain a steady weight and on am an excellent diet - that both my mother and wife cooked up making sure all my meals had everything in it. This has not just helped in keeping my weight to normal but even the doctors have advised not to put on anymore weight.
I have realsied one thing though - we take such things as eating, drinking, eyesight, the movement of your limbs etc so much for granted that it becomes a misery when even one of these are taken away- but then there is no point crying over it. Just leave it as a part of life and carry on from where you left off.

Take care,
Ananth

Ananth - you keep one in your pocket???
*lol* oh lawdy that's another DON'T TRY THIS AT HOME folks!
I have visions of you pulling it out with bits of pocket fluff and pockt lint and loose change , picking em off and attaching it! I'm sure doctors would have a field day withe the hygiene issues!
You're so funny!

I Think we all learn in here that were all different and out treatment affects us in different ways. For myself 2 months post treatment I can swallow most things as long as they are not too hard/dry, but despite that still stick to a mainly liquid diet.

I never had a feed ing tube so don't know what that is like, there where times when i wished they had fitted one, but on the whole and hearing some of the stories i'm glad i managed without.

My biggest problem is no appetite, i just never seem to feel hungry. Still need the energy supplements which are helping keep my weight stable at -2st.

Weird thing is my syliva finally gave up the ghost this week-end which seems to have made the dry mouth 10 times worse. Weird because it has taken so long and also because my oncologist pretty much assured me that with IMRT it wouldn't go altogher as he was able to give minimal exposure to my saliva glands and they should stay pretty much unaffected.

Still one more thing for me to give him a hard time over at the next review.

Dearest Chelle
I really am a doctors nightmare but then my attitude is such - with all that has happened what worse could happen. A lot of people with the usual peg are very careful to flush it well after use - I just pour in some water.

The new attachment is really good as it comes with two tubes - one to be kept as a spare, one to use. I asked for and got one more - so now I have my regular one at home, one that I carry (lint,small change,gauze,betadine) in my shirt or jacket pocket and one in the cars glove compartment in case I forget to carry the one I carry. Cant go around steralising all the tubes every day - so que sera sera!!!
This however - YOU CAN DO IT AT HOME!!!!
Lots of love, hugs and kisses ( which I have not been sending too many of late),
Ananth
PS " Laugh and the world laughs with you, Cry - you cry alone". can see you smiling!!!!!!