thank you for all you kind words of support, it is a great help to me to hear that i am not alone in my experiances, have had a very good week overall feeling very positive and strong for the radiotheropy, went to the pub for a drink (well 1/2 pint and lasted me an hour), sleeping better at night, and called in to see peolpe i work with, went to cinema today, all small things but i just want to do normal things again.

Bye for now

John

Hi John, glad to hear you are keeping your spirits up. The road to recovery is not a short one but as we have no choice you have to find a little enjoyment along the way. Being with friends is good as this illness can make you feel very isolated at times. But you've always got all of us on the message to talk to!!
It's what kept me sane so anything I can do to help a fellow member of this exclusive club I'm up for!
Kind regards
Sue

Hi Janmac, glad to hear you are making progress, I am now coming up to two years since ops, and even if I look back to this summer, on what I was doing, and how I felt; I think my surgeon was right he said don't expect miricales before two years and he was right,you may like to try a half of shandy as not so tough on the mouth, I still cannot manage a glass of wine. Big Bear Healing Hugs.

hi, i have had a faily good week, getting stronger all the time and eating a bit better, had a couple of rough days middle of the week, had the Flu jab i have had it in the past and was ok, but this time my arm was in so much pain and so tried and went off my food, only lasted a couple of days so not too bad. Had my last planning session for my mask, not so bad this time, also been out to a cafe twice and had soup and tea. Start my radiotheropy on Monday i am hoping i do not get too bad with it, i will have to wait and see.

Bye for now

John

Good Luck with radiotherapy, My husband finished his 6 week course at the end of June,He has been eating normally now since august and is getting fitter all the time, back to doing his fitness regime (he is addicted to exercise)!!!!also has a pint now and again.
We feel very lucky.He is attending for checks every 4 weeks,so far so good.

Forgot to mention how invaluable the 'BIOTENE' TOOTHPASTE, MOUTHWASH AND GEL were during the radiotherapy treatment.

Hi Chris,Janette, Can you tell me about the flap you had done on your tongue
I had part of my tougue removed and cannot eat anything only with a Teaspoon !
Would love to have a Tongue again my life would be so much better
Look forward to hearing from anyone who can help me with this.

cheers


Paul

hi paul, not sure if your message was for me or not, but i have had 1/2 my tongue removed and replaced with a flap, i am fairly new to all this as operation was only on 3/10/05 and i am now undergoing radiotheropy so not sure how i will be when that is all over.

From my short experaince i have found it very frustrating tying to eat, i used to eat out allot and find i miss the whole expaeraince of eating, that said i do have some pleasures, i like soup (Which is just as well as i am living on it at the moment) also sweet things, i was eating meat and vegitatable mush for a while but just gone off it at the moment, the gravey made me feel sick. I dont expect there is any easy answer to the eating problem we have to all get to a level that we can acheive without the eating being a big strugle.

Hope all goes well for you

John

Just a quick note on how i have been doing with radiotheropy. The first week went O.K but it my second week the hospital thought i had a bad reaction as my neck started to swell up. By the middle of the second week my neck was so large they could not get the mask on and aslso i felt very unwell, was taken into hospital for a few days and found had an infection in my neck which had spread into my blood, had neck cut and put on IV for couple of days and infection cleared up. Now into my third week and feel very much better.

Bye for now

John

Hi John, you sound as though you've been having a tough time of it. How awful not to be able to get the mask on - bet it was awful when they tried!!
Glad you're over that little set back. Keep strong it will soon be over! Hope you are still eating, it's so important to keep your strength up and your weight. Eat sleep and mouthwash! What more can I say. Only that I'm an 8 stone weakling and I survived it!
Love
Sue

hi all,

It has been some time since i posted, i have been having radiotheropy and have found it a bit difficult, however finally got to the end and although feeling sore in mouth and throat i am not as bad as i could have been, finshed treatment 4 days ago so still got a couple of weeks before start to recover, just glad the daliy treatment is over. It has been so long since my operation on October 3rd i just now want to start to feel somewhere near normal again (whatever normal now is !!!!)

Christmas and new year was probally the most difficult time with everyone eating and drinking and enjoying themseleves, but i plan to have my christmas in a few months when i feel a bit better, the chritsmas tree is going back up and everything so i still have my christmas to look forward to.

Just going day to day at moment, yesterday felt quite bad but today feel a bit better so thought i would sit down and post a message.

Hope everyone is keeping well

Bye for now

John

Welcome back John! Great to hear that you have finished your radio and feeling well enough to post on here. You can only get slowly better and better and enjoy the little achievements that each day brings. Don't be too ambitious! Like you I quite like soup, which is just as well as I will be on it forever! It's amazing how many concoctions you can come up with, with a bit of imagination and experimenting! We are having another Christmas next weekend as my son and his wife get back from India after 6 weeks' honeymoon, so you are not the only crazy family on the block!!! Good luck John and continue going from strength to strength. Luv B x

Thanks Brenda, once i start eating again i will be asking you for some of your tips on soups, never been much of a good cook but will be experimenting with everything to find what i can both eat and enjoy.

Bye for now

John

Hi Johnmac.
Like the rest of us.....alcohol in spirit form and any kind of spicy food will set your tongue on fire as it is that much more sensitive after Radiotherapy and the effects seem to be for good, like the dry mouth thing. Three years on and although I did benefit from some improvement, i'm still catious and still restricted. Early on I bought one of those smoothie makers and used this for nutritious fruit drinks and soup. There is no end to what you can do. I made some great fruit drinks from bannanas, strawberries, kiwi etc...but mainly avoided the citrus fruits as they can be a bit sharp. All the experimenting encourages some fairly healthy eating, as fixing a quick sandwich is no longer an alternative. Porridge, or Ready Brek is a popular choice on here which you can top with Honey etc. I know the taste will seem bland, and eating a chore, but you need to build up again and your taste will get better in time. People here will give you loads of ideas and suggestions and I hope you will will enjoy your delayed Christmas when it comes to that time.