hi had op 8 weeks ago have got 19 more radiotherapy days to have. peg being fitted next week as mouth is so sore,i am really scared about all this and as everything has happened so fast diagnosis to operation it is only now starting to sink in what i have actually had done and how much pain i think i am going to be in , my dr radiologist has said imagine your worst sore throat and times it by 100 can that be true,am on liquid drinks at mo until peg is fitted they are those meal replacement drinks, love to hear from any one

Dear Carl,
You will be recieving a lot of answers to your question/s here on this forum as there are only wonderful people here and are more like a family.
I read you message and from what I gather, what your radiologist says about your sore throat and unable to eat solid meals is true and from I have went through at the been though, talking as a layman you would be able to eat by spraying some anesthesia before you bite into anything solid. However to play it safe I would listen to the doctors advise and stick to fluids till the food and air passages have healed up well enough to get back to eating solids once again. This again should be determined by your doctor. The peg is a great substitute for mantaing your body in many ways -for some it is temperory as the things happen as I said above or permannent as it happend in my case. Its how you make best use of the peg, that will determine on what your capacity to "eat" will be. Initially expect some weight loss but you will soon get over it and get back toget the lady killer looks.
Just remember as I tell everyone - the clock cannot be reversed and what is happening is the present and something where no time should ever be utilised by feeling sorry for yourself. Think positively and ask the doctors the time period they expect the peg to be on. I for one have a permanent peg tube and have not eaten a single solid meal od even had a drop of water through my mouth. Its eight years now! This however is no cause to get yourself depressed as most pegs are inserted to keep you well "fed" and hydrated till the effetcs of the radation come down after which the doctors will determine a diet for you. If all is well (which I am positive it will be) - you should be able to bite into that steak (if you are a nonveg) in a matter of time. However, take care not to get tempted to eat solids and ask the doctors about the possibilities of having semi solids through your mouth. If not - the peg will back you up and do its job to keep you going on till your passage have settled down.
I know its easier said then done about being scared but then thats what we are all here for - to help you through all your problems and come out a winner. Come what come may - you are in the hands of the most strong family in the world and if you read some of the stories yoi will realise what I mean.

With warm regards,
Ananth

Ananth

This message has been edited. Last edited by: ANANTH,

Hi Carl
If it's all been very quick then it means they are getting on with the job and saving your life. They always give you the worst case scenario so don't panic - it's their way of protecting themselves. I was told I would never be able to talk again - certainly not sing; when in hospital they sent someone round to talk about what new career I might have since I'd not be able to continue as a teacher. Since then I've been told I'd suffer pain in my shoulder for the rest of my life and this and that and the other. 5 years on from my main op. and I am teaching, acting on stage and just finished recording some songs. I'm not pretending it's all going to be easy for you but think of it as a grand adventure and it does feel a bit better. IT'S THE ADVENTURE OF A LIFETIME - A WILD ROLLERCOASTER RIDE! Scarey - painful at times but what an adventure! Few others will ever experience it!
You will come out the other side eventually - all things must pass.
Good luck!
Tony

Hi Carl s, Welcome,

I know what you mean about going fast. No time to think about it. Or even read up on it. My husband Andy is so thankful he got his peg. His mouth is pretty bad it even hurts to drink water. He had completed 18 radiations and 2 chemo's. He says his mouth feels like it is on fire, it stings alot. He finally got some numbing spray. It is helping. We just keep saying this is for a reason. Be strong you will be fine.

take care, Jilly

quote:

Originally posted by carl s:
hi had op 8 weeks ago have got 19 more radiotherapy days to have. peg being fitted next week as mouth is so sore,i am really scared about all this and as everything has happened so fast diagnosis to operation it is only now starting to sink in what i have actually had done and how much pain i think i am going to be in , my dr radiologist has said imagine your worst sore throat and times it by 100 can that be true,am on liquid drinks at mo until peg is fitted they are those meal replacement drinks, love to hear from any one

Hi Carl.I am so glad you found the site your in the right place as they say.
I had my peg put in as I remember even beforemy operation.
I dohope you get the peg soons it a very simple procedure and painless.
I too had such a bad time with Radio and only thing I can suggest is to get some Aqua cream from your Cancer Nurse and pile it on your face between treatments.
If you browse through the site people have lots of ways they coped with the burnng .
I do hope you keepus podted and ask any questions you want on here

all the best

Paul

Thankyou all for your speedy replies, well its monday again now the start of another week of 5 radio sessions and Tuesday i have an allday chemo and Thursday i am having peg fitted, Is it usual i am having real trouble sleeping awake on the hour most every hour and doing so my wife is also awake as she sleeps light, and no she cannot go in to the spare room as because of my anxiety at the moment i need her next to me, for the anxiety i am taking .50mg of lorazapam which although a tiny dose twice a day it really helps especially when going to my radio sessions it seems to take away the fear of being clamped down to the table, although my sister has said people would pay good money to have that done to them by people in uniform haha.So have a good day people and post back as i will.

hi carl
welcome to the site,i found the radiotheraphy gave me more problems than the chemo,although i did not take to the chemo to well and my dr decided enough was enough and i didn't have all my treatment,i had constant sickness and diarrehoea all the way through.the radiotheraphy really wears you out and does untold soreness to the throat and thats without the rt burns!as paul has said make sure you use plenty of aqua cream or similar to your neck area and especially behind the ears and the ears.good luck with your journey,we are all here for you. love shirl xxx

Hi Carl, welcome to the site. I had 6 weeks RT and didn't find it too bad so dont give up all hope. All the best. Hagg.

Carl

The moisturiser point is so important, start before the burns start.

Have they offered you morphine patches? You should use them, asking them to increase the doseage as you have more radio.

Other thing you might get is mucus.

I hope things are bearable.

Best wishes

Martyn

is there any good way to control mucus eg drinking hot water, i am on my 3rd week of 6 radiotherapies.are the morphine patches for the mouth and throat pain or the skin ..

Hello carl

Please see these past posts about stringy saliva.

Best wishes
Vinod

Dear Carl,
The morphine patches are not just confined to a particular part of your body but to the entire. The morphine, depending on the pain level and if the doctor feel necessary can also be injected or taken orally. However, as Dr. Joshi points out do visit the link he has suggested and I am sure you will start feeling much better.

Take care amigo,
Ananth

Carl,
Moisturize, Moisturize, have we said this enough yet. During my radiation and chemo my throat felt like it was on fire, inside and out. Too bad we can't moisturize the inside. The PEG tube isn't so bad, like Ananth, mine is permament, but doesn't sound like yours should be. I never used morphine, just some percoset. That was all I needed to help me relax and go with the pain. As for the sleeping problem this will improve after all this is over. I often slept on a recliner as that was more comfortable for me and I think for my husband, as I didn't wake him. Late nite tv became my best friend, that and this computer.

Leann

thanks for that today is another week over with, yesterday thursday that is having had my peg fitted wow that was quick but am a little sore now. those tummy muscles do we really move them that much, so had chemo tuesday radiation monday to friday and peg fitted on thursday, what a week its beeen. love to you all. carl.

how long after radiotherapy stops does the swelling etc go down