New Mask to be made - anyone else ever experience this once treatment is started?

 Hi Elaine I was on 8 x30 mg cocodomol every 24 hours and at my worst I was  on 40 mil,of oramoorph again in a 24 hour period  with cheeky sips inbetween when hubby wasn’t looking. This was in the last few weeks I’d treatment and at least a month of recovery before I started to gradually wean my self off. My oncologist prescribed my medication. I used to take the oramorph inbetween co codomol doses as a top up. I know many had mst which is long lasting morphine for the night time. Maybe a call to g p or  cancer nurse ? Well done in soup I made really very watery veg soups butternut squash even watered down I felt gloopy same with leek and potato for a giid while  I just used any veg that hubby was using for his tea and light stock then fortified it with a neutral ensure , or cream  can you try poached eggs they slip down easily . Remember movicol with co codomol and oramorph know yiu will but just put in as a reminder for others  

Hugs Hazel. 

ER1 said:

just wondered, overnight, did most if you just have top up of oramorph as and when??

Hi Elaine Analgesia best taken by the clock not just when you think you need it. First lesson in pain management I learned from my oncologist

I never got on with cocodomol so I took paracetamol four times a day. Ibuprofen is an alternative if you can take it.

At my most needy I took Oramorph 10-15 mg five times a day alternated with the paracetamol so that I was taking something every 2 hours. Once I started waking at night to take more morphine I was given MST Continum which is extended release morphine you take twice daily, morning and night. This took care of background pain nicely. It doesn't go entirely and my throat did hurt when I swallowed but I was pretty comfortable if not a little sleepy.

No need to suffer. You can take a heck of a lot more morphine if you need it. I was told every two hours but I never got to that.

PLUS two sachets of Laxido

It took me 4 weeks to gradually come off till I was just on paracetamol. By 12 weeks I was taking no pain killers at all.

Don't forget. BY THE CLOCK works much much better and you're not forever chasing pain

Hope you get on top of it soon

Thanks dani, co codamol hells snd i take it 4 hrly by the clock then at bedtime i just wsit til i wake up and take oramorph 10mls. Thats it, thanks, may give brufen a go, thanks for that. Ive got steroids whuch have helped with swallowing pain, its just gnawing jaw naeck pain niw xx

cheers xx

I reckon background control with MST is brilliant. It made so much difference to me but I guess as you've actually finished you might not get that unless you ladle on the angst. 

I too found twice daily MST tablets, alongside paracetamol and ibuprofen, really really helpful. The pain never disappeared entirely but it became much more bearable - more like just having a mildly sore throat. I contacted my GP who immediately prescribed it over the phone when post RT pain kicked in suddenly about two weeks after treatment ended. Hope you get it sorted. 

I agree, it is soul destroying when you anticipate eating something and find it just doesn't work.  Do keep going back to things though.  What doesn't work one week might be different 2 weeks later.

Roasted butternut squash soup is the one that works well for me, provided it's not too thick.  As Hazel said, soup with potato can be too gloopy, even when watered down.

I too found it difficult to eat while I had the NG tube in place.  The feeling of the tube was uncomfortable in my throat plus the feeds were filling me up too much so I just didn't have any appetite to eat.  Bit of a catch 22!!

In terms of painkillers, I was alternating through the day with oramorph, paracetamol and ibuprofen, all liquids, making sure I took oramorph 30 minutes before eating.

Linda x

Thanks, seen by gp going to try gabapentin so fingers crossed it helps x

Thanks Linda

I agree with the NG, did you get yoyr removed once eating improved or did it come out beforehand ?? Part of me wonders, if i have to eat, maybe a will ???? Hard one isnt it? I completely understand that its best to keep as life saving but it is catch 22 like you say xx

That’s good. I forgot to say, I used to gargle with Oxetacaine before eating and used Difflam afterwards to help numb any breakthrough pain.  This just made eating bearable during my worst couple of weeks. 

I hope alll went well for you today, Aly

Jo

x