What to do

For the record I think it is an ulcer is that likely? On the tongue?

Hi AG14 Well done so far. I would have a word with your nurse asap and address any issues with your tongue and eating as you really need to nip these things in the bud. I got to the stage I couldn't eat at all . Weetabix microwaved is a simple easy food . Regarding taste everything tastes rubbish even water. You just have to take each day at a time and get enough food and water into yourself to keep your weight up that is your number one priority. Something to keep in mind is medication which was the hardest part of the day for me  trying to swallowing tablets , get soluble ones asap is my advice. You will get through this crap . All the Best Regards Minmax

Hi Min,

Thank you for that yes I will speak to my support and radiographer tomorrow as for the eating I agree.

Thank you comments like yours do really help.

Tony 

Hi. Talk to your RT team at your next Zap. There are medications like gelclair and Caphosol to help protect your mouth. Difflam mouthwash swilled around fifteen minutes before you eat can help numb the pain and there is a preparation called Oxytecaine which is like antacid with local anaesthetic. You swill gargle and swallow. Your team will all be aware of the progression of symptoms so should supply you with stuff to keep you comfortable so don’t play down your discomfort. 
In the end it’s likely you won’t be able to eat much at all and the pain can be considerable but managed with proper use of pain killer taken regularly by rote. Most of us end up on morphine but don’t give up on paracetamol which is an excellent pain killer in combination. 
If you’re into home made you can make high protein shakes with fruit whole milk cream ice cream and nut butters. 
Soup is good but avoid tomato which is irritant. 
You can liquidise most things to help you get them down. 
There are also complete food replacements like Fortisips or Ensures on prescription

Do you have a feeding tube placed? 
I relied on my nasogastric tube from the end of week three when the symptoms really ramped up b

Best wishes 

Hi Tony. I had chemoradiation following a tonsillectomy earlier this year and it certainly can get pretty ulcerated down there. 
It is really important that you don’t lose weight else your mask won’t fit properly and it can become a real battle. I reached the point where I was eating only Ready Brek, made with Fortisip and double cream, and custard, again with lots of cream. This kept my weight up. It was, of course, tasteless and I was eating for fuel rather than for any pleasure. At its worst, around week 8, I was also anaesthetising my throat with Oxetacaine prior to eating and using Difflam afterwards. 
As for meds, I existed on continual doses of Ibuprofen and Paracetamol alternately in suspension (the soluble ones were just agony and I simply couldn’t swallow tablets) along with daily MST for a short while. 
I hope Week 3 goes well for you.

M

Hi Dani,

Again it is always good to be reading comments like this interesting to read how each person deals with things I have been using caphosol probably not as much as I should do 4 x a day.

I will get advise asap and I promise to keep eating.

Take care

Tony

Hi M,

An there was I, thinking only I ate redy brek actually it is as I said the one thing I don't mind eating thank you for your comments I have liquid paracetamol but as yet not used any if fact I have not considered taking any pain relief just yet, no pain just yet just sore and looking at my tongue it does look like something so yes I will get that checked.

Though maybe I will have some pain the end of week three.

Take care

Tony

Hi AG14 Call your nurse and get everything in place ASAP .regarding pain relief I had pain killers I couldn't even swallow. You have to remember if you start going down hill like not eating or drinking you can become seriously ill very quickly which happened to me and getting isolated in my own room during a pandemic , O my God how lucky was i . Unfortunately things will get worse so be prepared and never sit on a problem. You will beat this crap . All the best Regards Minmax . I recommend getting audio books and listening to some humour like PG Woodhouse 

Hi, I suffered bad the 6th week of my treatment with sore tongue/ mouth. Even taking difflain and soluble co codomol only took the edge off for a small time so I had a bit of a wobble and was admitted to clatterbridge the last 5 days of my treatment. I had no appetite or interest in eating and this is were my PEG feeding tube was invaluable. As in a previous post a life saver. Do you have one fitted. Really down to my own naivety and loss of appetite I wasn't putting enough ensure through to sustain me. I was then put on 8 ensure a day but they did the job. Speak to your radiographers their there to help also. Hopefully like me the pain will pass. If you have a peg use it. Good luck John 

Hi Tony 

see your team as everyone has said . Fir ulcer see if they wil prescribe gelclair I had ulcer full length of my tongue it was there approx 13 weeks so needs medication. As for eating forget taste it’s all about getting calories inside you for next 6 months at least. If you’ve a peg use it if not you may a n g tune at some point not many manage to eat sll the way through  

I was told to aim for 2500 calories snd 3 litres of water each snd every day I tried but still lost weight even eith n g tube fitted. 
plus as everyone has mentioned pain killers by end if week 3 many of us were on co codomol snd starting oramorph. 
Hazel x