Sore mouth

Hi Meg. Welcome. All you mention is about par for the course I’m afraid 

You won’t damage your tongue but it’s going to get more painful. I took morphine every four hours with paracetamol in between. I took it by the clock to stay in front of the pain. When the morphine wasn’t cutting it I had long acting morphine twice a day and that was a game changer 

What was the absolute life saver was my nasogastric tube which meant I didn’t need to swallow anything. 
Most people are fitted with a PEG or RIG stomach tube. Were you offered that? Because that is the answer. 
Can I ask where you are being treated? 

MAD MEG said:

Hello. I am new here and not sure how to properly use the site, so please forgive me - or put me right!

You’re fine. It doesn’t matter which section you post in. 

Hi Meg

That was exactly where I was at the same stage of treatment. Unfortunately I did not have a PEG or NG tube as the treatment was aimed at my jaw so had to keep on eating. The game changer for me when eating was some mouth deadening liquid I was prescribed by my radiiologist. I used to swish it around my mouth just before eating and it would deaden my mouth long enough for me to gobble down some food before my mouth came back to life. I was also prescribed fentanyl patches and liquid morphine and that with the 4 hourly panadol helped get me through although it still was not easy. I ended up losing 10k.g.

Have a talk to your radiologist and they should be able to help.

Keep going you will get through although it is tough.

Lyn

Hi Meg

T2N1M0 tonsil cancer....diagnosed Feb 2023....Chemoradiotherapy finished June 2023....4 cisplatin  + 30 Radio

As others have stated pain is par for the course, CNS should advise you on morphine ...I was advised to take 5-10 mls of Oramorph 15-30 min  before eating....also on slow release morphine...PEG tube was a lifesaver when eating became impossible.

Good Luck

Peter

Hi Mad Meg welcome from me. You need to take pain killers by rote to keep on top of the pain. At my worst I was taking 6 x30 mg cocodomol and up to 40 mil  of oramorph in a 24 hour period with cheeky sips in between. So check with your team on Monday about increasing the dose of I was in pain I would increase the oramorph. Middle of week 3 my swallow and pain ramped up I had ng tube fitted it was a lifesaver I would ask on Monday about that’s has yiuve still a fair few sessions to have. Never think yiubare a wimp. We are having treatment in a most delicate area to get rid of cancer it’s brutal and painful. Please stick with us we are all here to help each other get through this. 
hugs Hazel.  
p s post anywhere there’s no right or wrong way to post. 

Like many others I started to take slow release morphine (MST) once the pain ramped up towards the end of RT. This was on top of 24/7 paracetamol and ibuprofen, and swilling with Oxetecaine before eating and Difflam afterwards. For a few weeks I survived on bucketloads of custard made with double cream, as well as high calorie milkshakes, none of which I could taste.

It’s really crucial to take laxatives regularly, Movocol or something similar, to deal with potentially crippling constipation once you’ve started the morphine. Thinking of you. 

I have today done some experimenting with the high-calorie powders and found all the flavours both vile and stinging to the mouth. Like MarkEL I concocted a "meal" with custard, cream, "natural flavour" powder and ice cream and managed it okay in small bursts. So that's about 450 cals - all full of sugar of course so off to brush my teeth!! Most I have eaten in a week. Feel I might manage a slice of bread and butter. Now to think about fruits and veggies to avoid constipation - have had that before from codeine and it caused me to scream. Could do without that. I assume smoothies are worth a go. Never done so much food prep in my life (with the 40-odd meals already in the freezer now inedible to me!). 

Main issue today was swallowing my bunch of "non-cancer" drugs that I take daily. Rang the GP on Thursday re liquid formats and he argued with me that it was unnecessary as I could either crush them or dissolve them. I was not impressed as some have a protective coating or are supposed to be released into the stomach gradually - did he not know that? He said he would look into it and get back to me by the end of Thursday. He did not. Meanwhile on Saturday morning one of my pills got stuck in my throat and it took me 45 minutes to get it to go down. I read that could have burnt my throat on its own!!! I rang the Christie Hotline and they were appalled. They said they would email the surgery and instruct them to prescribe liquid forms where they exist and consider prescribing a different drug where there is no liquid option.

Meanwhile I have experimented with dissolving tablets. Two are capsules but the instructions say DO NOT open the capsules as they are slow release. One has a hard coating that diissolved but only into tiny shards which I didn't dare drink and it would have been impossible to sift out from the powder. Four tablets did dissolve but were of gritty consistency. I tried taking them with lots of water but it was too painful and made me cough a lot

I can't see where I replied to Beesuit - I am at the Christie in Manchester.

Love to all, Meg.

MAD MEG said:

I can't see where I replied to Beesuit - I am at the Christie in Manchester.

It’s fine Meg. We can all make sense of what you’ve written. The Christie should look after you  

If you’re worried about constipation ask for Movicol or Laxido. These are the usual laxatives we are prescribed 

Smoothies are fine. The internet has lots of recipes for high calorie high protein ones. 
I the meal replacement drinks will see you right. 
Do you have a feeding tube? 
Most people  have a PEG or a RIG placed before treatment starts. If you don’t maybe you can ask about a nasogastric one. 

Hi Meg Christie’s will look after you. I too had the odd battle with my g p and them issuing medication I could put in via tube. Once oncologist emailed them they acted pretty swiftly. It’s another thing we don’t need though. 
Good look with smoothies I bought a nutri bullet which was fine but after a few days I couldn’t  swallow the smoothies. 
please ask for laxido or movicol as constipation you don’t need. Worth asking about a n g tube ad well. Dani fed overnight I fed during the day it’s all about finding a balance. 
hugs Hazel xx

One thing I will add Meg is that I got all my paracetamol and ibuprofen in syrup form and that was a godsend. I used to load a syringe and squirt it down my throat, along with Oramorph for any breakthrough pain. So much easier.