hi everyone
i haven't been on here for a while,due to constantly in and out of hospital.i have finished my chemo and radiotherapy back in april this year.i dont feel i am getting very far as my mouth is driving me mad,no saliva etc plus soreness.i have all the stuff to treat it from aspav to biotene products,its been getting me very down.also i have not eaten since march and i have a fine bore nasal tube fitted as i was not suitable for the peg.the worst thing for me is also depression,i get down if we go anywhere and i have to cart my pump with me,its not something you can hide in a handbag.but people do stare at me because of this tube plus my hair loss and my hair has grown back dark grey and curly lol.i have seen the oncologist twice since treatment finished and he is very pleased with the results.as tumour has gone plus my lymph nodes look normal.so that was some good news we got there.i will just be so glad to be able to eat again as i miss food so much i dream of it.nice catching up on how your all doing,love shirl xxx

Hi Shirl
Hope you are feeling a little better

i know the feeling of no saliva a month ago i thought i would never eat proper food again

now 2 days since supplements

i had the nasal tube in for about 4 hours they said they could give me a backpack for it a proper one i was sick and the tube came out

could not do with getting it put in again

i suffered the same as you and if you check my posts you will see

my friends here especially Michelle helped me through

i contacted an acupuncturest for the depression and see a pychologist these have both helped me

the acupuncturist is also looking at ways to stimulate my saliva glands

any time we can be of help just post

Take care
Dave and Sue

Hey Shirl,
Great news that the cancer seems to have gone.
You'll get there slowly but surely.
& in the mean time you have us lot here that understand just how you feel!
All the best,
Michelle

Hi shirl

Like Michelle says good news about the cancer,will keep you in my thoughts.

Mum

thanks you lovely people for replying to my post,i have been referred to a speech therapist as my ent specialist thinks i may be losing the ability to swallow.i have been given loads of tongue exercises to do,plus drinking water with a spoon.my mouth has been so sore recently that the exerises have been very hard to do.just wondering how much longer will i have this tube,things like yoghurt burn my mouth something rotten,even fruit squashes burn so much i end up in tears.really fancies some toast the other day, that was a no go with no saliva it just stayed in my mouth.love shirl xxx

Hello Shirl

Great news. Nice to hear from you again.

If you are having trouble logging in under your old username Shirley Kirby, let me know.

Best wishes
Vinod

Shirley,
I also struggled with yoghurt in the begining. But found custard easier as it's creamier. Ambrosia do a few flavours - the toffee ones lush! & when i tryed yoghurt again, i went for the Tesco Finest & Morrisons The Best range as they use channeol island cream in them which makes them smoother than some of the cheaper ranges.
The first month back to eating for me - i spent a small fortune on expensive creamy deserts!

Fruit juices are still tricky for me. The acidity is intolerable. But yoghurty banana smoothies with ice cream are not bad at all.

I miss crusty bread toast more than most things! i haven't had bread since November & doubt i'll manage it ever again - it just turns to dough & isn't worth the effort swallowing mouthfuls of water.

I'm sure you'll get there. Don't be hard on yourself!

Chin up!
Michelle

Hi Chell, Hi Shirley
how absurdly nice it is to learn that I am not alone in the footsteps that I can eat. I miss crusty bread indeed bread of any complexion having managed to just one slice with scrambled eggs over the last 15 months. I found that instant whip type puddings (Tescos value range and Lidl's was the best value. chocolate, butterscotch, banana, strawberry all these flavours all are available) Rice pudding, custard, tapioca and good old-fashioned sago were all a godsend. Now I can manage more recognizably adult puddings such as fruit tart and custard and the old standby, ice cream.

I adore smoothies of one sort or another (my favourites are banana or summer fruits -- the frozen section of the supermarket gets raided periodically -- or, if I'm feeling flush, mango - all with yoghurt and milk and ice cream. Yum Yum Yum. Please don't tell my diabetic specialist nurse!

oddly I can manage pasta with pesto - see your local supermarket for either green pesto or red pesto. You can was make your own using basil leaves, a couple of cloves of garlic and either pine kernels or unsalted cashew nuts and freshly grated parmesan . Blitze them together with olive oil. So far I have managed spaghetti, tortellini, penne and tagliatelli.

Keep a positive mnental attitude

Robert WT

thanks guys for the eating tips,i must admit its getting to the stage when i am pratically giving up on ever eating again!i have to try more the problem is when its sore and painful i dont want to do it again.i tried manuka honey to heal my mouth,the pain was incredible and i spent the next 15 mins crying with the awful stinging pain.i keep trying ice lollies but they wont melt in my mouth they just go all like waxy.anyway thanks for the tips peeps.love shirl xxx

Hi guys, Ben reading your post I too wish for bread,a nice steak among many other things.
As you will know have to eat with a Teaspoon as only got part tongue left and my mouth does not open much.
I was thinking last night watching a programme how nice it would be to walk down the street eating a bag of chips
It is frustraing as from where I live alot of restaurants, I have only ben to Italin as they do Pasta but what a rip off will not be going there again!
I still find hard to go out anywhere there is noise as nobody understands me and think im deaf too

Paul

Hi Shirl, you seem to have had a bad time of it and a bit down at pres. Hope interaction with on these pages cheers you up a bit. My husband share the dubious honour with you of having the same cancer. His had spread to his tonsils and also his lymph nodes. You have been pretty vague about yours, if it is not too much to ask, how did yours present itself, do you know what stage it was and was there no mention of surgery?

Angie

Hi All
I have just had my 11th RT &3rd Chemo trip, I am now having to start on basicly sloppy food and for a treat tonight Deb & I went and got KFC Boneless Meal, this goes soft (CRUST) after about 3minutes so it was ezy to consume HOWEVER I did need alot of liquid and that makes the grease around the meal a bit clingy on the inside of my gullet(YUK) swallowing is harder as there is something parcially blocking the passage down.
The Registrar and the Rns keep telling me to have liquids but I wished to go as long as I could but I bekieve that is it.
As for Meals they recomend Thickshakes, Icecream, Custards, OH yeah Soups(YUK)and anything HI-ENERGY so I'll give it a go.
Take care of yourselves Guys & Gals I'll be thinking of you every day.
By the way they are going to give me a PEG shortly so that will be a challenge as that has been one of my Fears.
Love to ALL TREV

hi angie
i didn't have any tonsils they were taken out when i was 4 years old.anyway this is how i first noticed something was wrong.kept feeling a lump in my throat when i swallowed i went to g.p and he couldn't find anything amiss,anyway a couple of months later i had 3cm lump in the left side of my neck when it was still there 3 months later i was referred to the hospital and the following week i was told it was cancer at the base of my tongue.do you know what i never asked at any time what stage was i at,i thing a lot of it i tried to bury my head in the sand.firstly they talked about surgery but after looking at it and seeing that it was superficial they decided on radiotherapy and chemo.its now 4 months since my treatment finished and yet i am still so tired is this normal.honestly i could sleep the whole day and night away.kindest regards shirl xxx

Hi Shirl, From what I have learned here and from a friend who has undergone similar treatment the tiredness seems to be quite normal. Five months before diagnosis is a long time! You were lucky it was 'superficial'. I realise it's difficult for you, but try to be positive. As everyone here will tell you there is light at the end of the tunnel and you're further down the tunnel than we are. Keep us posted.

hi all
just to let you all know that i came out of hospital yesterday after 4 weeks,couldn't get on top of the sickness i am still feeling worn out and tired all the time.love to all shirl xxx