Pain relief

Hi Scoobee

i can’t help with the fentanyl as i had long lasting morphine for background pain. In my experience there is nothing short of local anaesthetic that dulls the pain of swallowing. Trusts don’t often prescribe locals, they can be dangerous ( biting your tongue and aspirating liquids for a start) 

Time to use your feeding tube and if you don’t have one insist in a nasogastric tube and just stop swallowing ( apart from your exercises) I had an NG at the end of week three and it saved my life. No more agonising pain and night feeding by pump left my days clear. 

PS

My trust routinely placed NGs when needed. I remember Hazel RadioactiveRaz refusing to budge from hospital one day til she got hers. If she’s around she will attest what a life saver tube feeding is. 

Did you regain your swallowing ability soon after the end of treatment? Thats a big worry for me.

Absolutely yes. I have no idea why some teams tell their patients that they have to keep swallowing. I didn’t swallow anything for two months. 

This sounds about the right timeframe for things starting to get difficult.  Hopefully the hospital will work with you to sort out the pain and your swallow.  Although I did eat right up to the last day of treatment I was using my PEG for supplementary feeding, hydration and meds from around the end of week 3.

Like you morphine did not work for me.  There is a cohort of people in northern Europe who don't metabolise morphine very well.  I was on Oxycodone and a fairly high dose of it by the end of treatment/into recovery.  I was also on slow release patches at the end.  You need to insist that what you have is not working for you.

I did find taking some paracetamol around 30 minutes before I wanted to swallow helped me greatly.  It may not work for you.  I also had some mouth numbing liquid (oxcetecane?) which was worse than useless (and the hospital agreed).  The issue with the local anaesthetic in the throat is the potential for shutting down the epiglottis and causing aspiration which is why they don't like you to swallow the oxcetecane.

I can't remember if you have a PEG/RIG or not, but now may be the time to ask for feeding help.  Keeping the calories going in is essential to healing.

PFJTHS said:

I also had some mouth numbing liquid (oxcetecane?) which was worse than useless (and the hospital agreed).  The issue with the local anaesthetic in the throat is the potential for shutting down the epiglottis and causing aspiration which is why they don't like you to swallow the oxcetecane.

I had that and was told to swallow it. I think it’s indicated for oesophageal ulceration which I’m sure it was designed for. Like you I found it useless. 

Hi yes my ng tube was my lifesaver it enabled me to continue to get through treatment and more important recovery. I went from being able to eat ok on the 3 rd Friday to nothing a. On Monday my dietician wanted me to leave if  a few days  like Dani said refused to leave that day  without it. I had consented to it being put in if and when I needed it.  Likewise week 3 of recovery I took it out with my cns permission. I did swallow and jaw exercises every day and even now I still continue to do them several times a day. I’ve no swallow issues at all. My issues are spicy and alcohol I get ulcers as soon as either touch my mouth or tongue so leave well alone. 
Hope  this helps  

i yas 30 mg Co cofomol  and then oramoroh as and when i needdd it in between 

Hazel x