Sore mouth

Yes. Mouth will get more and more sore, Lizzie  That’s why so many of us end up relying on tube feeding. I was told that if I lost more than five percent of my body weight I would be hospitalised. Difflam can be diluted  if that helps. Meds like Caphosol and Gelclair can protect your mouth so use them. I used both eight times a day at one stage. 
Toothpaste: try Oranurse which has no SLS or flavour, it’s often the SLS that’s the culprit and use a gentle toothbrush head. 
Eventually I got to the stage that only properly titrated pain relief helped. Long and short acting morphine plus paracetamol worked for me, taken by rote before pain broke through. There was still pain but it was manageable. Oh and laxatives are really important if you are in opiates

Hope that helps 

Hi Beesuit.  Thankyou.  I am so lucky to be able  to ask all these questions snd have you all here to reply   I have some gel Clair but haven’t used it yet. (Don’t know how but will read packet).  Does the Diflam actually work?   I have used twice but didn’t notice much except it made mouth more stingy.  I have gargled with Aspirin in water though snd that seems to help.  What is SLS please?   I will try snd get that other toothpaste as well.  Oh I know.  Is it sodium Laurel sulphate?   Lizzie

Difflam helps anaesthetise your mouth. 15 minutes before eating. There is also a preparation called Antacid Oxytecaine that you can swill gargle and swallow. 
OraNurse online. Amazon has it 

Hi Lizzie 

My mouth was really sore, full of ulcers, sorry you're having the same. Dani has already mentioned the meds I used. I set timers on my phone and followed this routine:

30 mins before eating soluble cocodamol & antacid oxetacine 

15 mins before eating difflam rinse

Diluted Flourigard,  caphosol after eating, then gelclair

I couldn't tolerate soups/smoothies and ate soft food at other side of mouth to the ulcers. 

Eventually I also skilled aspirin, but did this a couple of hours after the cocodamol.

Hope you find what works for you. Glad chemo not making you as sick. The steroids post chemo made me really hungry.

Take care, Ronnie x 

Hi Lizzie as everyone has already said it’s par for the course once we hit week 3 everything starts to ramp up. I was the same one day could est the next the mouth was sore sensitive snd along my tongue ulcers started. If you haven’t got strong painkillers ie opiates it’s worth speaking with your team tomorrow. It’s essential you maintain weight and it’s so hard to do with a sore mouth. If you’ve a peg start using it . Yes don’t forget laxido or movicol. as constipation is the  last thing you need. 
Hazel xx

Thankyou everyone.  I have eaten some pancakes as I know one of you recommended those.   I am going to talk to my team tomorrow as I haven’t got half this stuff yet.  I am already on laxitives am snd pm.  I took note of everyone s comments re that score!   I am learning what my mouth can tolerate.  Seemingly milky, creamy bland stuff.  Can’t eat healthy now, which I want to do , but impossible.  Thankyou snd best wishes to everyone.  Lizzie

Sorry to hear you’re struggling Lizzie. I found swallowing Oxytecaine before eating invaluable in helping me during the worst days. 

Hi Lizzie. Don’t worry about healthy  food at this stage.  it’s all about calories any  way you can. One of my strangest thoughts in supermarket was calories calories the more  the better. A life time of healthy eating went out of the window I found sweet things far easier during recovery as well. 
just eat what you can. I used lashings of lurpack and double cream needs must was my thinking. I was aiming for 2500 calories every day including 85 gram of protein which wasn’t easy to do when you can’t swallow. It was 6 ensures a day minimum 
Hazel x

Thankyou Hazel.  Yes. I get the high calorie  thinking.  I am on cream/butter etc. I will chat to team today.   It’s funny. I actually feel ok in my actual self. Just mouth snd phlegm.  I had some phlegm sort of stuck in my throat this morning. I steamed and use nebuliser but ended up gagging and trying to bring it up. But I couldn’t.  Bit frightening actually. Lizzie

Hi Lizzie 

The amount of sticky phlegm always seems more than it really is and the feeling of choking in it can be overwhelming. I found it actually easier to swallow with lots of sips of water ( something fizzy if you can manage) than to cough it up. If I could cough it up it defied gravity. Awful.