Dry Mouth Issues

Hi Suzanne. You are still really early in your recovery and there are going to be times when you seem to be going backwards so don't despair. Are you still using Gelclair three or four times daily? That really helps soothe the ulcers. Swishing oramorph before swallowing or aspirin then spitting it out before eating will dull the pain too.

The best mouthwash is Bioxtra which you can get on prescription but while you are sorting that out you can buy a bottle from Amazon to try.

I'm not sure the nebuliser will help dry mouth. My mucous was manageable and I just spat often. 

Saliva substitutes never worked for me but a tip I picked up from a late effects clinic was to use a pocket spray bottle filled with water and spritz my mouth when I felt dry. This works at night too. Its better than washing  away whatever saliva you do have with sips of water

My NG tube stayed in till six weeks before I threw it up and decided not to go to hospital for a replacement. It was hard but all the things I've mentioned help me start eating  again, even then I was on morphine till 12 weeks

Don't be disheartened. Recovery isn't linear but you will get there

When your mouth is more comfortable chewing sugar free gum stimulates saliva and there are lots of flavours that aren't mint. I couldn't use Duraphat for a year because the SLS in it killed my mouth so I used Oranurse and had a fluoride varnish from the dentist every three months.

You can try acupuncture later on too. There's a bit about it in my blog

Hope someone of this helps. 

Suzanne

I feel for you. I am now 9 week post and recognise what you are saying. 

I still have ulcers but am managing to do a mix of soft food and Fortisips.  I have a PEG so maybe that is easier for eating orally.  When I do eat I need to take some local anaesthetic for the remaining ulcers, but it still hurts like hell  Don't rush it.  Take your time and make sure you keep hydrated and the calories up.  Maybe try little and often for food?

As an aside, I do feel that my ulcers become less painful just after I have hydrated - most of my hydration is still through the PEG although I do have tea and sparkling mineral water orally.

The overnight dry mouth is a killer.  I have tried a vast number of gels and potions the hospital gave me.  I get some relief from a mouthwash called Oral7(it is not on prescription) and Oralieve gel (hardly works).  Other than that it is drink lots during the night, which does not help with sleep.  Unfortunately all of the options are very personalised - what works for me may be a total no-no for someone else.

I gave up the nebuliser as soon as my mucus stabilised.  It really did nothing got my dryness.

Salt & Bicarb mouthwash has worked well for me and kept me clear of infection throughout.

You should see some good improvement over the next couple of weeks.  I did in that timeframe.  Unfortunately this process is two steps forwards and on back.  Sounds like you have taken that step back, but you will move forward again soon.

Just to update, I think I have a recurrence of thrush as well which I’m sure won’t be helping!

Thanks Dani for your advice.

I’m feeling pretty overwhelmed with everything just now. Feels like 2 steps back for every small step forward.

I’ll ask my nurse for the mouthwash which should hopefully make a difference.

i had stopped using Gelclair as the ulcers were improving but I’ll make sure I include them regularly.

Suzanne75 said:

Just to update, I think I have a recurrence of thrush as well which I’m sure won’t be helping!

You need a week at least of fluconazole. Nystatin is often ineffective and it's really not worth trying that for a week first. GPs with knowledge of HNC should know this. 

Suzanne75 said:

I’m feeling pretty overwhelmed with everything just now. Feels like 2 steps back for every small step forward.

You will and that's OK. It's normal to have ups and downs in recovery so just ride it out. A day turns into a weeks, into a month and before you know it you are well on the way to a really acceptable normal. We are never quite the same but most of us make a good and fairly uneventful recovery. 

If you can get out for a walk, get some fresh air and some sun (ha ha) on your face you will feel better.

Hang on in there

Thanks Peter

I think I’m just anxious to see some improvements and I’m getting frustrated when there’s more obstacles. It’s reassuring that you’re ahead in this journey and things do get better.

I’ll have a look at the various gels and hopefully find one that works.

What local anaesthetic are you using?

I share your frustration about progress!  I use Oxcetacaine which gives me about 10 minutes of relief.  It works for some and not for others.  This is a prescription only medicine.  You do have to be careful using such medicines so as not to anesthetise your throat (you do swallow it after holding it in your mouth for as long as you can) otherwise you run the risk of aspiration.

Thanks Dani

My fabulous nurse has organised both fluconazole and nystatin which should do the trick.

I am really looking forward to managing a walk in the fresh air.

Thanks Peter 

I have already been prescribed some Oxcetacaine as I was hoping to start small amounts of food soon. 

Hello Suzanne.  Hang on in there.  For me, I found everything made my mouth somewhat sore and uncomfortable.  All the gels, rinses, etc etc just seemed to make it all worse.  I still rarely use them.  Mild salt water on occasion.  Eat lots of cream, good for calories and doesn’t hurt mouth (it didn’t mine anyway) A dab of biotene gel at night  

all the best

lizzie