Hello thanks for the reply

Its early days for me and a tounge sore which is a result of RT is certainly causing some pain.

I rarely have throat pain when I swallow, and dry food is virtually impossible to bet down. I ate some ham tonight with scrambled eggs but really found eating a chore today. I know I cannot give up eating as I need to eat to rebuild but never thought I would have to eat so much, it has been quite a shock tucking away 2500 calories a day.

I used to like a glass of wine but reading online it looks like that will be too painful. I am nervous but know my drinking was a not a cause of my cancer as I was not a heavy drinker. I am itching to try half a guiness think of the calories and may try this week whilst away for a few days on holiday.

I am eating allsorts at the moment and like my new appearence which was quite a shock at first and took some mentally getting use to, so I have big deal about putting the weight back on as my mouth improves I know I will be eating a lot normally and calories will be in the food I eat.

Thanks for the words of encouragement.

Nigel

Hi Nigel, guiness is a definite YES! The only alcohol my oncologist recommends. Lots of goodness in it, all other alcohol regarded as "empty" calories as no goodness to be had physically.
I'm not a beer drinker so do not enjoy guiness but it didn't irritate my irradiated bits!

Sue a drop of the black stuff it is. Having not drank a beer since the 16th May and I am sure half a guniness will give me a good nights sleep

Nigel the tongue does feel very thick, weighty and heavy and quite cooked for some months after. Maybe longer than I recall now. I know mine still felt kind of cooked about 8 months later in the summer on very hot days - but nothing like the dominance in the mouth immediately 2 months after radotherapy though. Apart from low saliva it feels as before now.

Yes and seeing that 'new' body in shop windows, house mirrors and closed circuit cameras can be a strange feeling. It was for me the most positive thing to be able to wear skinny items again.

Dry food still does not go down without a drink even now unless it's something like stewed fruit and basically is very wet so this is along term problem for most of us - but I can manage taost now with tea ok.

This will sound odd but one thing that has helped me recently was redecorating my bedroom a different colour scheme and changing everything again. I had decorated the bedroom just before surgery knowing I'd be spending alot of time in that room. I loved the colour scheme then, but did lie in bed looking at it rather a lot. This summer I changed the colour scheme totally again and it has had a good psychological effect in that I no longer associate the room with lying there day after day and the cancer treatment.

This is something others might consider doing if they just want to move on a bit.

I never drank much either - now the only thing that really goes down well on occasion is one glass of on the sweet side champagne or a glass of Asti Spumante.
Other wines taste of tannin and just a mouthful of a dry Chardonnay can set of ulcers. Guinness though might be creamy and yes it would be very body building I'm sure!

Have a lovely holiday. Somehow when we are away we do try other foods I find.

Pauline

Many thanks, yes my tounge was well and truely fried and one lesion cause pain, it appeared half way through radiation, and I asked the consultant are you missing and zapping my tounge instead of my tonsil. He looked at it and said no sorry lesions, ulcers by product of chemo and radiotheraphy, and can take along time to heal, thanks I said. Two weeks ago they had another look and said nothing suspicious just a by product of dry mouth and RT. It is reducing and the pain is subsiding but you can imagine I have to worry about putting food pass the ulcer and my throat!

So food is more of a chore, but with my sister this week should be real fun, because I will be trying a few more food titbits and I know with water things will go down.

I am sat at the campsite, Welsh hills all around, sun setting, classical music, its going to be a great week I know it. If I am good I will treat myself to that half, blimey sat here I feel almost human again.

Nigel

Good on you Nigel, keep warm and dry!
Sue

Nigel,

Feel like I went through what you're going through food-wise and work wise. My diagnosis of tonsillar cancer was 2/2004. My last of 35 RT's was 5/7/2004, I kicked morphine in 6/2004, and was back to work 7/2004, but not really feeling at 100% until at least October.

A year later, my weight is up to just half a stone shy of what it was pre-RT. I mostly live on milkshakes, eggs over easy, and pasta in creamy cheese sauce (fettucine alfredo, kraft mac 'n cheese). Bacon is surprisingly easy to eat, as is spam.

My new fave is Unagi Kabayaki, which is a Japanese dish made of fresh water eel with a sweet bbq sauce. My taste buds are so retarded and my tongue and palate are so fried I need strong tasting foods with no acid or spice. Sort of a contradiction in terms. But eel fits the bill, as does fatty bacon, and not-overcooked salmon.

Good luck.

Hello thanks for the response.

I am on holiday this week and have been trying new things out as well as my fruit smoothies.

I have managed to eat most things with sauce or gravey but to be honest because of the ulcer on my tounge it has been chore eating, tonight I had pasta in a olive oil and pesto sauce which I can taste but took me 45 minutes to eat!

I feel generally well if not emotionally well, apart from my tounge and I know all the washes are helping so I grin and bear it.

If anyone has any help/remedies on mouth/tounge sores after RT/Chemo please

I get the most relief just from rinsing with warm water and brushing my teeth. I think it helps cut down on acid and bacteria that aggravate the sores

Reading all the posts on food got me wondering about what I used to crave for...and what I now consider as favourite foods.
I used to love Indian food (the hot stuff) but cant touch it now.....only the mild dishes like Korma which are actually a bit dry and taste of nothing compared to the mild Indian dishes I sometimes ate pre-RT.
Chinese food is more appealing now as there seems to be more flavour in depth, as opposed to just being hot....though the sweet/sour sauces can be a little stodgy sometimes so I water them down.
Spaghetti Bolognese is a firm favourite, and custard over anything sweet. I probably eat too much custard and cream products but I got to get the stuff down. I'm sure...like me, that many of you have nearly choked on bits of unlubricated food which sometimes lodges in your throat. This happened while out the other day and I almost coughed for England.
Nigel.....If you ever wander down to the New Forest area or West London (Heathrow) in your van then let me know, as I often commute between the two in my camper (fishing). In the summer (or from Easter onwards) I always take a trip to the West country to see friends/relatives so could meet you for a quick guiness en route....or any RT patient friendly drink! My holiday bus gets parked up from the end of October thru to Easter and gets its service, some TLC, and is taxed again in the spring. Keep you posted when I'm passing thru Devon again.

No worries

The main problem I have at the momemnt is an ulcer on the underside of my tounge, it appeared during RT and twice the medics have said its a side effect. Its most proberly the one thing that holds my life back at the moment because eating wise I am enjoying trying new food but I have to be careful especially at the end of the day. Its affecting my speech I think I have a lisp, but my fiends say its fine.

I have the 1st joing head and neck clinic on Monday. It will be nearly 6 weeks since treatment finished. I am not sure what too expect, apart from the camara down my nose and some more poking and prodding. I suppose I like to hear "everything looks fine" but I am not sure it works that way.

Like I say quality of life is about 75% at the moment without the ulcer it would be closer to 95%! I know its going but boy its taking its time and reminding me its their!

Hi Nigel, I swear by salt water mouth washes. Have a try put a teaspoon of salt in a pint of warm water and rinse your mouth as often as you can with it. Used salt water baths after having the kids and abdo sugery and it seems to help heal up the wounds. Hope it works for you.
Can't stress eno' the more you eat the more you will be able to eat, and faster!
Take care
Sue

Sue already on the case took the Children to a party yesterday and tucking into all sorts of rubbish including crisps!

I have started the salt water rinse and it does has a calming effect on the tounge, after all being a surfer(well I hope to go again real soon) I know that salt water cleans and aids the healing process.

I forgot to tell you I tried a Guniness on holiday out of a can. horrid stuff, back to the drawing baord on that one

Hi Nigel, CRISPS I am impressed!
Shame about the Guiness, can't think of anything else at the mo. Must admit I was drinking a lot of very dilute Ribena at one stage mainly cos you get so bored with water all the time. Now drink "baby" wine - 1/2 inch of white wine topped up with water. Think that's safe but await comments from all if not!
Take care
Sue

Sue

Mmm wine skip that one after what I have heard about its burning sensation, but not to be defeated I am off out for tea tonight, yes out, first time out eating since well lets think May?. I may try half a draft guniness tonight see what effect that has.

Try and make sure I do not embarass my friend by dribbling my crab and brandy soup down my chin or reflux cough all over her. She knows the score, wait for the tounge ulcer to react, watch me go pale for 2 minutes and do not talk to me whilst I try and scoff the lot

Salt water definatley calming things down.