End of week 4

Spider3 said:

My mouth throat and tongue feel on fire ,and that's with taking cocodamol and pregabalin!! I'm thinking I need to up the pain relief, what's the next step for that ,any recommendations would be appreciated?

Hi Mark. At your stage I was on oramorph every four hours with paracetamol in between, so I was taking something every two hours. In morning and evening I took long acting morphine which took the background pain away. 
Difflam is an NSAID and anti inflammatory but I must say it did little for me. I abandoned tedious bolus feeding as a complete waste of time and fed slowly by pump overnight. It was remarkably liberating. 
I can’t comment on chemo nausea as I didn’t have chemo save to say taking your antiemetics even if you do t feel sick seems to be the way to go. 
Similarly with pain relief. Take it by the clock

Hugs 

PS

I can say that no pain relief took away the acute pain of swallowing so I just didn’t. 

I would ask for better pain relief

At your point i was on co-codamol as well but i wasn't on a rig, and i was struggling to get the co-codamol down.

I went onto oramorph and after a week of oramorph (to acclimatise me) they gave me fentanyl patches as well. It didnt make life painless but it meant i could get my fortisips down as well as enough water to stay hydrated. I used to spray difflam between each sip

In my case it was the radiographer who saw how much i was struggling and insisted in seeing the registrar and getting me better pain meds.

In your case, i would be proactive and ask for better meds.

Good luck!

Trev

Hi Mark 

Chemo gave me a rough ride for some time, anti emetics were upped to cope, dexamethasone gave me troublesome hiccups.... Oramorph was effective when the dosage was increased and frequency increased, CNS advised swirling around the mouth/throat area prior to swallowing.

Peter 

Hi pump feeding ask team  tomorrow I had a rucksack and fed during day nighttime feeding I couldn’t   do but find what suits you. Pain relief it works to a point aim like Dani says every 2 hours I was 30 mg cocodomol  interspersed with oramorph Next few weeks it keeps ramping up you need to be well hydrated and the right nutrition. 
you’ll get there it’s brutal treatment but end results are good 

Hazel xx

end of week 4.. things are not going to let up, so get your pain relief up to speed.. ask about a baseline of paracetamol, zomorph (long lasting morphine) twice a day, and oromorph as and when.. see what your team says, but you really need to get it right.. pump feed overnight to get those calories in.. just drink if you can, it'll keep everyone happy.. oh, as you'll be on 'proper' pain relief, make sure you take your laxatives.. you don't want opioid induced constipation on top of everything else. keep an eye on your neck.. keep your team informed.

Beau Chapeau said:

end of week 4.. things are not going to let up, so get your pain relief up to speed.. ask about a baseline of paracetamol, zomorph (long lasting morphine) twice a day, and oromorph as and when.. see what your team says, but you really need to get it right.. pump feed overnight to get those calories in.. just drink if you can, it'll keep everyone happy.. oh, as you'll be on 'proper' pain relief, make sure you take your laxatives.. you don't want opioid induced constipation on top of everything else. keep an eye on your neck.. keep your team informed.

 Spider3 

This was exactly me. Long acting morphine was a complete game changer. I was completely exhausted at the end and largely slept for two weeks after treatment end but the pain was ok. 

Mark I think you have had all the great advice about pump feeding etc.  Make sure they give you liquid meds so you don't have to try and swallow pills - straight in through the G-Tube!

I found the chemo really screwed my mouth.  Once off it I did find some relief, but the last week of RT really hit hard with pain and other symptoms.  At the end of week 4/5 I asked for slow release patches to work alongside the other meds I was on.