Recovery not so Smooth! Still can't eat/drink

Hi Ben. Lots of people take a good while to get better. 
We all walk, sometimes crawl, at our own pace. 
Could I suggest you don’t rinse your mouth so frequently, but do run this past your team. 
I had Caphosol and that helped heal my ulcers really well. 
Get your GP to check your mouth for thrush. It’s really common after RT and delays healing an awful lot. 
Ask if a vitamin supplement might be in order while your there. I took vit E to help me heal. 
Diet ginger ale and soda water were good for me and helped clean my mouth 

Some suggestions there

I hope you find an answer soon. 

Ben92 said:

I did briefly write an introduction to my situation when I was diagnosed beginning of the year, however I'm not too sure where that piece has ended up! Anyway....

It’s here 

community.macmillan.org.uk/.../hi-i-m-new-tongue-cancer-diagnosis-dec-2022

You really have had intensive treatment with adjuvant and induction chemo on top of RT to a large area if your mouth. It’s no surprise you’re struggling. Do speech and therapy have any suggestions ? 

Hi Dani,

Thanks for getting back so quickly! 

I am regularly using Caphasol, unfortunately to no avail in regards to healing the ulcers. 

My specialist nurse and oncogist have both taken a look at my sores/ulcers recently and aren't concerned although they are is taking time to heal!

No mention of thrush from either the nurse ot oncologist. I will maybe put the question to them along with the benefit of vitamins- I have not tried supplements yet! 

Its all frustration on my part tbh as I know if I were pain free or at least could see the sores clearing up, I could push on with getting back to eating and drinking normally.

The wait continues! Thanks for your advice, very much appreciated. 

Ben.

Take care Ben. It’s a long  bloody road ! But it’s worth it. 

Hi Ben  I had ulcers along my tongue and cheeks for around 13 weeks I didn’t have as much chemo as you did. I did use  gelclair helped with the ulcers ask on prescription. I also had oxycetaine suspension which I tok 20  mins prior to eating ir trying to eat to help numb my throat. 
hope this he,so. Yes xyimelts are a lifeline even niw 5 years almist u still use 1/2 of ine every night for dry mouth. 
Baby steps one day at a time you’ll get there. 

Hazel xx

I know from my 6 week post treatment review that S&L are keen to get me in for a 'one on one' but am yet to receive an appointment. My 12 week post treatment review is on 20th this month so I will catch up with the whole team then and put some of your suggestions to them and see what suggestions they have of they're own! 

Thanks, Ben 

Hi Hazel, 

Thanks for answering my long winded complaints! 

I have been prescribed gelclair- maybe I should use it more often than I am but it's never really done much for me. Like I said maybe worth another go!

I will mention the oxycetaine.

Thanks again! 

Ben 

Hi Ben

Sorry to hear that the ulcers are holding you back from eating easily. It is a waiting game unfortunately. You are naturally keen to get your recovery on the road and get back to some semblance of normality but it is a marathon rather than a sprint. Hold in there and change will happen and then you will look back on this in a years time and realise how far you have come. It's one foot in front of the other at the moment.

Ulcers are the worst. One of mine took a while to settle down but eventually it healed and yours will too.

Sending you best wishes on your ongoing recovery.

Lyn

Hi Ben. Coconut water is the most comfortable drink for me and i switched to bottled water as tap water still burns and feels like it strips whatever moisture I have on my tongue / throat. I know everyone is different but the coconut water was great for me. Are xylimelts prescribed or bought online? All the best

Hi it’s taken me almost  5 years to tolerate some tap water. We live in a hard water area so I still have to filter it . I agree if strips mg tongue. The xyimelts sadly we have to buy online there’s a few suppliers si worth looking for offers. I’ve resigned myself ti the fact I will always need at least 1/2 of one. 
I also suffer burning tongue syndrome i keot a diary to mind out my triggers ehh h are strong cheese anythjng pickled fermented and most yoghurts apart from Greek   I also rinse with propolis again available online. 
it helps. 
We are all the same but different 

Hazel xx