Last Update (21/05) - Ho Hum, Seconds out - Round 4!

Things have gone downhill over the weekend.  I've no pain unless I try and use my mouth - then, this morning, it is excruciating, just like a tonsillectomy again!  I'm calling the CNS this morning to try and get something to numb the pain in my mouth so I can get back to feeding and drinking somewhat normally.  Fingers crossed.

PFJTHS said:

I'm calling the CNS this morning to try and get something to numb the pain in my mouth so I can get back to feeding and drinking somewhat

Have you got the usual Caphosol and Difflam? You probably know this but in case anybody else reads this, Caphosol is a phosphate buffer and helps protect the mucous membranes. Difflam has anaesthetic properties and is useful to swish round mouth and throat ten minutes are so before trying to eat. 
I had Oxetecaine which didn’t do much good. Morphine dulled the background pain which thankfully you don’t have. 
My NG was the only thing that saved me. 

PS some people, I  have read, got anaesthetic lollipops 

That’s interesting because I found a swig of Oxetecaine before eating really helped, followed by a Difflam rinse afterwards.  

Can’t add to what Danis put.  I was similar I was day 12 when it hit my throat. Difflam and Oxectacaine  didn’t help either. Lifesaver was my n g tube which was fitted at end of week 3. Just remember the pegs there for a reason please use it when needed don’t be brave, we  all different how we react. 
Best wishes for this week we do know where you are, its a case if been there got the t shirt so to speak. 

Hazel 

Just spoken to the CNS and they are working up a script for me this afternoon.  I suspect some of my problem is Oral Thrush looking at my tongue.  Anyway, all advice and any medications gratefully received.

I've hydrated through the PEG this morning and am about to try some breakfast.  Without the pump and big bags it is a messy process, but at least I have practiced doing it.

Have you got some of the small bottles and a 50ml syringe ? Useful if you just need a top up. 

MarkEL said:

That’s interesting because I found a swig of Oxetecaine before eating really helped, followed by a Difflam rinse afterwards.  

I suffered all the way through with nausea. It didn’t take much to make me throw up. Oxetecaine was one. I’ve since discovered that more than 34Gy to the brain stem can do that. I got more than that. Some clinicians are trying lower doses with success. 

Yes both.  But they are messy to fill.  

Hi Peter, hope you get sorted out quickly and get rid of that pain. Best wishes. x