Radiotherapy day 16 - burning!

Hi Sarah. Yes this is it I’m afraid. A lot of people hit the wall here and often reach a sort of plateau in week 4. 
You need morphine. But don’t underestimate the power of paracetamol and ibuprofen if you can take it. 
I was on morphine every four hours with paracetamol in between. Later on I had long acting morphine night and morning. The NG tube went in at around the stage you’re at. Do you have a feeding tube? 
Tell your RT team tomorrow you’re in trouble or you’ll have a rotten weekend. 
You might get some antacid with Oxetecaine which has a local anaesthetic in it. Gargle and swallow. 
Sorry to say it’s like this till two or three weeks after treatment. 

PS. Get a chart up on the kitchen wall and take your analgesia by the clock. It works better. Nothing will kill the acute pain of swallowing but decent pain relief will dull the background pain. 

Oh and laxatives if you’re on codeine or morphine. 

Sarah J said:

I birthed 2 children without pain relief

Heavens! I had an epidural and stopped at the one. I wasn’t going to do that again.

Hi sadly I can relate to what you’re going through. As Dani says tell your team exactly how you are feeling by end if week 3 I was on oramorph and 30mg co codomol take a laxido ir movicol  sachet or 2 daily as well. I had n g tube fitted at start if week 4 as to swallow was like swallowing broken glass. If you’ve a peg use it don’t battle through. If not ask about n g tube being fitted. I git ti stage where sipping water made me cry.  Remember the end result like  childbirth is deffo worth it. So I only had 1 the pain was bad enough not to be repeated !!

This time next year it will be a distant memory but fir now it’s what it is don’t be brave tell  your team how you feel. 
hugs Hazel. 
di you have gelclair for your mouth it doesn’t help with pain but coats your mouth to try to eat.  Plus works on ulcers. 

Hi Dani,

Thanks for your replies. Good to know this is it for the next month or so at least, and to be honest, if this is a plateau I can probably cope with it. It's the thought of it getting worse and worse every day that concerns me. I have paracetamol, ibuprofen, co-codamol 30/500 and plain codeine too. Also have omeprazole for the ibuprofen, and movicol sachets. Took one earlier and my stomach hasn't stopped growling! Lol tmi. I haven't been offered morphine yet. I was prescribed the antacid with Oxetacaine today, they had to order it so it will be in on Friday. Also have soluble aspirin and Difflam rinse, and gelclair - but literally everything I swallow stings like crazy, it's unbearable. There's a second or two delay before the fire rises up and burns so I assume it must be the very back of my tongue/throat that is hurting as it doesn't hurt to just chew food in my mouth.

Hi Hazel, thanks for your reply. I saw the doctor today (not my usual doctor, I'm at a different hospital this week due to the machine being broken) and he prescribed a big bag of meds (in my reply to Dani above) so I'm hoping this will help. I don't have a tube and haven't been offered one. To be honest, I had an NG tube post-surgery and I hated it so I wasn't keen on having one again, but it may be a case of needs must depending on whether I can get the burning pain under control. I have Gelclair but it feels like lighting a match in my mouth and I'm running around looking for a fire extinguisher afterwards!

Can I just add, you guys are so great, you answer posts so quickly and it means we never feel alone on this horrific journey to hell and back - so thank you 

Oh bless you we all help,each other. Don’t be to quick to dismiss the n g tube if you need it you need it. I  had mine in for 3 weeks during treatment and 3 weeks after it was  my lifeline When treatment finished it allowed me to experiment with food knowing I was getting most if my calories and all my medication through it. Left me free to experiment with bits if food. I’m sure it was  that that helped me recover as quickly as I did. Just bear it in mind in case you struggle.

hugs Hazel 

you’ll get there we all do in our own time. 

You can dilute the gelclair I used to use about 30 mil of water to a sachet. But yes it’s like petrol at times.