Recovering from Tonsil Cancer

Chas/Shirley

Good to catch up. As a matter of experience and too avoid you suffering as I did, can I advise you to seek advice from a Speech/Langusge Therapist or YouTube for some tutorials.

As soon as you stop eating, chewing or drinking regularly the muscles in your neck, face, cheeks and tongue start to atrophy. I found out after surgery, chemo and radiotherapy that I should have started doing my exercises before I started which was a shame. It’s simple mouth exercises like saying the ‘e’ with exaggerated lips and moving your tongue north, south, east and west outside your mouth to strengthen everything although you’ll get some strange looks! Can’t recommend this enough.

The radiotherapy fried my throat Chas and as a result of the collateral damage I’m now about to have my 2nd stretch to open my throat up to try and help me eat more. I’ve found those little pots of chopped pear and peach in syrup are great - I’ve then put ready made custard on it and a huge dollop of extra thick double cream, not healthy but super full of calories and really slides down easy too. I’ve made prawn cocktail (minus the salad), cauliflower cheese and macoroni cheese at home with a little more sauce than normal and that goes down well too. If like me your throat lining is a bit raw try to avoid spicy or rich stuff as it is more painful than pleasurable.

Good luck!

Reevesy - aka Nick

Hi nick thank you for your advice I will try doing some more exercises plus will try the fruit and cream, I’ve seen the specialist about the pain I’m getting under my tongue, it appears that the radiation has done a lot of damage and it’s left my gum exposed which is why I’m in so much pain when trying to eat,so I’m having an op next Tuesday if he can find enough tissue he will try to cover it,if not there’s some kind of medication but if that doesn’t work then it goes for major surgery so I’m hoping the first one works, I’m trying to be optimistic but it’s hard, sorry to sound down especially as there’s a lot worse of than me but just seems to be one thing after another,sorry rant over.

I hope you are keeping well or as well as can be expected it’s nice to have a catch up now and again. 

Best wishes.

shirley.

Hi chas really pleased to hear that you have turned the corner,it makes a nice change to hear good news, please continue to let us know how you get on as it does help others too.

best wishes 

shirley.

Hello 

just checking in - how you feeling these days? 

Hey Jules. Nice for you to get in touch! In a word; rollercoaster. Finished treatment in Aug 2018 but had to have x3 stretches over the following year (ish) to get things moving. Limited saliva production, constantly applying lip salve and still can’t swallow properly (scar tissue). Regular and annoying mini infections be that viral or bacterial. Went from 3 month MRI’s to 6 month in August 2020, had results recently and had a lymph in my throat identified as being ‘swollen’ by a couple of mm but ‘evenly’ (?). As funny as it seems, I am going into hospital this afternoon for a PET scan to check it - yes, I am full of dread especially as I’ve had 2 1/2 years without any issues! I am alive and of course MUST remain focussed/thankful but living with the uncertainty and fear is a bit of a life sentence on its own. My life is very different as I am but we shall see - I am an over-thinker so am hoping that when I had the last scan I was under the weather and I had a mild infection causing the anomaly . Fingers crossed - how are you guys??

Hi....sorry you're back under the scanner. Hope everything is OK

You should pop this in the HNC forum, but no pressure There are lots of people who would like to heat how you're getting on

All the best

Hello - wow you’ve had a lot going on. Just wanted to touch base and have a catch up. It’s all a bit strange isn’t it as you loose touch of how you used to feel before all of this. I have no idea what a normal throat feels like now and if I have any discomfort of any kind I automatically panic. 

I had my Hemi Thyroidectomy Friday and to be honest its painful but a walk in the park compared to the tonsillectomy and radiotherapy!! Still mentally hard because I’m now waiting for results again as are you so I totally get it....so please keep in touch and update on your PET results 

Jules