Mouth Ulcers

Hi Jill,

So sorry that you are still struggling.

About 5 weeks into my 6 week course of radiotherapy I developed terrible mouth ulcers. They reached a crescendo about a week after radiotherapy finished. I used Diflam mouthwash 4 times a day and also gargled warm saltwater in between and very frequently. At that time my saliva had completely dried up except for some horrible mucus and stringy saliva. I have a lot of confidence in my Consultant and he advised me to keep with the Diflam and warm salt water. After about 2 weeks the ulcers completely cleared.

4 weeks on and I am now producing almost normal saliva during the day although not as much as I would like and my mouth completely dries up at night. In the morning I go straight for the saltwater gargle then brush teeth then Diflam mouthwash and my mouth feels clean and fresh. I am still a bit sore mostly the roof of my mouth and at time get a burning sensation around my mouth and throat but I keep on with the Diflam and saltwater and things are steadily improving. I am now eating all types of solid food. I can’t eat big portions or spicy food yet. I tend to eat smaller portions. I had my peg removed last week and have not had any Fortisips for about 3 weeks now. My consultant told me that he expected my mouth to remain sore for about another 6 weeks then start to improve over the next 12 months or so.

Anyway give the Diflam and warm saltwater a go. It will sting, but grit your teeth and keep it up if you can. No gain without pain!!! As I said before my mouth, tongue and throat were covered in ulcers and it worked for me. Good luck.

Mark

Opps

Sorry about the double reply. I did not think it worked the 1st time then 2 replys popped up!!!!!

Mark i cant believe how good you are, am so jealous you ve had the peg out, i ve had mine in now 6 months, im going to really make the point next check up in April now tho, i l tell them about you lol, no joking apart you ve been great, i know we re all different but honestly my tongue is the worst thing now, i am drinking the fortisips more than before but thats just cos i want this bloody peg out lol thanks for the tip on salt water and difflam, i did try that in hospital but didnt take to it i might try again now im further down the line.  Carry on the good work, i just feel a wimp now lol  Take care.

Jill

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Hi Jill,

Firstly you are certainly not a wimp by any stretch of the imagination. I more than anyone can understand what you are going through. For about a month my mouth, throat and tongue were very swollen, sore and painful. When I was at hospital the Nutritionist was against me having my peg out. The Nutritionist is a lovely girl but I just said “listen her young Rachael I can tell you that I am now eating and I will never use the b****y thing again so I want it gone” In a nice way of course. My Consultant and all the medical team at the hospital are all amazed by my approach and progress that I have made. I am a very determined character and have also been lucky with my healing.

Please give the Difflam and warm saltwater a go. Have the water as hot as you can take it. Do the saltwater first then the Difflam. Then at regular intervals do the saltwater as often as you can. I am not for one moment saying it’s pleasant. It will sting for a while but I am 100% confident this will do the trick.

When your mouth is feeling a bit better get the food down your throat and chuck those awful Fortisips in the bin. I am not trying to be clever or a smart arse and can appreciate how difficult it is for you, but keep trying and it will come, I promise you. Even when my mouth was really bad I made sure I ate a little every day to keep the throat muscles working. It may only have been a spoonful or two but it was something. When my cancer tumour was removed from my neck I also lost all the Lymph Nodes, nerves and muscles from my left side. I am left with permenent numbness to the left side of my lower face, left lower lip and left side of my tongue. I also lost the muscles from the left side of my throat so my swallow is very weak and I often get things stuck at the top of my throat. When I first started trying to eat I kept biting my tongue and lip as I cannot feel them. It’s like when you have been to the dentist. But I kept going and now bite my lip and tongue less and less. When I get a bit of food stuck I just give a sharp cough and start again. (I must remember to keep my mouth shut otherwise the bit of food goes across the room like a bullet from a gun lol). I suppose what I am trying to say is give it a real go and I am sure you will improve. I can’t emperies how good salt is for cleaning and healing. Also get that food in as much as you can. Little and often and you will soon be able to get rid of your peg and Fortisips.

Keep up the fight Jill and stay strong and you will be fine. I will be thinking of you gargling the saltwater and cursing me, lol.

You take care and let me know how you get on.

Love Mark

XXX

Morning Mark, god you have been brilliant i think you have suffered more than me i reckon, dont get me wrong its been hard for me but i havent lost feeling like you, i had my tonsils out and the one lymph node and you can hardly see my scar.  Went for my video xray yesterday, and i have to have dialtation thats a throat stretch, it was fascinating watching it on the screen swallowing mechanisms.  I want to eat and can eat quite a bit of soft stuff but i want the more substantial things, meat, pasta, rice, etc so im hoping after the stretch i will be able to fingers crossed, although they did say it may take a few times!!  Yes regarding the peg, when i go on the 15th April im going to insist it comes out i dont use it now, i drink the damn things lol so dont see what the problem is??  I can guess what she l say tho, if you re having your throat stretched we l wait till after that in case you cant swallow after the op!!!!!  Another thing my tongue is badly cracked front to halfway back and this is very sore so thats another thing i want to ask about, do you think it will knit back together???  We re going to my brothers wedding in york on thursday so im hoping i can eat the meal lol i l do my best but am going to take my fortisips to mix with the alcohol it tastes better than way, i kid myself its a cocktail lol

Anyway you take care and speak soon

Jill

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