Soft palette burning pain

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Hey all

Thanks for all the wonderful help offered here, I constantly return here to search for help and advice and it’s really helping.

I’m now starting my 4th week of recovery, Oropharyngeal 30 RT 2 Cisplatin, I’m really happy for the most part, I’ve started swimming a couple of times and been on a gentle 20 mile cycle, still having 4 Fortisips and 500ml of overnight feed daily, neck looks normalish and doesn’t hurt, and my lump is barely noticeable if at all, mucus and saliva varies daily and taste is still off and I have no appetite, I know I should be happy but I’m not!

I can now drink water again although taste isn’t great it’s not horrible, I have started trying to eat, I’ve eaten an eighth of a melon a few times, very small slice of quiche, tried a few other things, I can drink a warm cup of tea. 
So here’s the thing, obviously my soft palette / Uvula area are still raw, it hurts when I swallow, depending on what I eat or drink, coffee gives mild but tolerable pain, I tried ribena and that hurt like hell, pineapple similar and had baked beans the other evening and that was harsh as hell.

I guess the question is, am I making it worse? Should I not be trying and leave it longer before eating / drinking so it can fully recover or should I plough on and ignore the pain to some extent, eat drink things that only give mild pain? I’m really keen to stop using my tube and not be dependant on it to live although I’m not desperate just would be nice sooner than later. I’m also aware that this process is one of “eat to live” rather than eating for enjoyment, at least for a while anyway.

Also are their any tips / drugs that can help speed up the recovery process in your mouth?

Appreciate any input, thanks in advance 

Guy

  • Hi Guy. I must say you are doing fantastically well to achieve what you describe in only four weeks. We need to push ourselves mentally during recovery but I have always believed the body heals at its own pace. Others may disagree. I ate things that I was comfortable with. I escaped any soft palate pain but my uvula was completely fried by the treatment. It remains a stump! I don't think you can do yourself much damage trying to swallow, after all some centres refuse tube feeding completely in some strange belief that the throat somehow forgets to work if it doesn't for a while....insane!

    A few tips. Tomato? forget it for now (baked beans) Fruit drinks are terribly harsh so drink milk/milky smoothies/tea/chocolate.

    In no particular order you can try tinned macaroni cheese, tinned peaches, pasta overcooked past al dente with any sauce but tomato, supermarket mousses and trifles, poached eggs, eggs scrambled with Philly cheese to keep it soft, toasted teacakes smothered in Lurpak, porridge or Ready Brek if porridge is too lumpy. If you want to adventure into meat the best is slow cooked lamb stew which is soft and fatty. 

    As for drugs...Gelclair and Caphosol were my go to during and after treatment......plus good old morphine. I didn't abandon that till twelve weeks

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Thanks Dani, much appreciated

  • Hi Guy, I can't really add anything to the great advice Dani has given you. I do have to say for 4 weeks post treatment, you are doing really well. Recovery can take a good while, give yourself the time to heal. 

    Ray

  • Hi Guy! 

    I finished my treatment at the end of September of 2022 and I was determined to get rid of my PEG, therefore I first tried to force myself to eat or drink things that were really painful (I had lots of mouth ulcers). Then I went back to trying things that I could tolerate and start enjoying again (chocolate mousse, rice pudding, crème caramel,  soft boiled eggs with butter...etc - no fruit at all as far too acidic). I  waved good bye to my PEG at the end of December 2022.  It took me over a year before I was able to eat a banana. You do not need to try to endure more pain, be kind to yourself and take each day at a time. You will get there, you just need to take baby steps. I think you are doing extremely well. Plus if you force yourself to eat food that is really painful to swallow, you will become more and more anxious to eat anything. 

    Look after yourself and be kind to yourself. Your body will thank you.

    Sending you loads of positive vibes. 

    Take care,

    Fab1

  • Thanks Fab1, much appreciated