Hi Hazel I think Ole as a caretaker with Carrick and maybe Poch in the summer?

Saw my doc today its not thrush..the whole white stuff is Ulceration, he said its unusual to have this at early week three and im sensitive to radiotherapy, I can up the Oramorph if I cant swallow and he thinks Im going to have problems. He`s putting me on drink supplements from tomorrow. Good news is my weight is stable but I cant think why. 

hanging in there..Dave

Hi Dave

yiu hsve ny deepest I had that as well another name is mucositis it is painful I had ut combined with thrush .the seinks are to ensure that you get nutrition down you. I was on fresubin to start with followed by Ensure and at week 4 ended  up with the feeding tube .its bearable I was afraid if it to be honest but it did it’s job when it became too painful to eat and drink the drinks my weight held steady right up to last week if radiotherapy.they don’t want you to loose weight as the mask won’t for and cost wise to make a new one i was to,s £7k. How true I don’t know .

top tip if u have the tube ask for a drink of water take a straw with yiu and when they start drink and swallow it goes down easier my first one was in 21 days then ha s to have another one on a plus side you’re medication can go down it as well .it does take a worry of you am nit saying that’s what will happen but don’t be afraid if it does  I am living proof that it works ,it frees u from the worry if eating you can still concentrate on drinking as calories are important at this stage answer for recovery.

read my blog if u haven’t already 

ps I ahted the chocolate flavours couldn’t stomach them strawberry banana vanilla were palatable answer if u ddind them too thick get some complan and water them down more Calabria’s and more hydration 

www.radioactiveraz..wordpress.com

shout out if u need to know anything. And don’t worry

hazel 

Hi

at least you know have a plan it does put things into perspective.reason for PEG is with lymph nodes being affected both side the Radiotherapy unlike mine will affect both side s if his neck and swallowing for a time will be difficult the PEG  does away with the need for a feeding tubes so swings and roundabouts.

the mask isn’t as bad as it sounds I looked at it this way it saved my life and I spoke to it everyday and personalised the entire procedure .

all,I can say for now is eat  eat and eat a slice much as he can until treatment starts if u can do it anyone can . Keep going back to the blogs as there is so much to take in

good luck shout out if yiu have any questions we will try answer help

hazel 

Thanks Hazel I dont fancy the tube at all but If I have to I will of course, doc says I can lose 10% body weight before that will be considered though, my wife Julie is trying to get food into me at every opportunity :)

Good news is Iv not felt sick for a few days, If this Ulceration dies down a bit i`ll be well chuffed.

Dave

HinDabe n Julie

eat what u can while u can keep on top of teeth cleaning and gargle with warm salt water.i lost 18 lb I. Total but know if people who lost over 3 stone .

keep going nearly half way there , recovery is a long slow process but we all getbthere in the end. I’ve just had a few chocolate s which when I was at your stage never thought I would eat chocolate again

take care

hazel 

Hi Laura

and thank you for the encoragemet as well as a thanks to Hazel and all.

I'm glad you have found the blogs/site helpful and there are a few of us in this club at various stages of out treatment and its a great support and great place for tips and helping one another.

Its surpising how little tips can make the differnce and how you wouldnt think of things if not told beforehand.
At least you have the start of your treatment plan and also depending on potential teeth extracting as this will delay it slighly to allow the jaw to settle.

Depending on your circunstances, I always advice to try and get the radiotherpay sessions first thing in the morning (95% mine were 9am) as it makes a big differnce. You get treatment over with and frees up rest day for rest/taking meds and not breaking up day with a mid morning/afternoon appointment plan. Might not be your preference but I would recommend.

Keep us posted, stay postive and good luck and best wishes with plan. We are all hear for you and rooting for you.

Kind regards

ian

sorry Laura,

just noticed I have repeated myself re recommendation ..sorry lol

I will wind my neck in

kind regards

ian

Almost hafway through my treatmeant and Im having chronic hiccups, I was awake 2.5 hours last night and got hiccups now, apparently Morphine can cause it but the radiologists today seemed surprised and hadnt heard of it before. I dont normally have indegestion problems or hiccups, wondering of anyone else has had this problem? apart from that my throat seems better today the new meds are working well.

Dave 

Hi Dave

Sorry to hear of hiccups and havnt heard of before either and touch wood, not something that I was hit with. Hopefully just a minor very temporary blip and glad to hear your throat seems better and meds working

kind regards

ian