Things we were never told

The biggest one for me was the potential to change my ability to eat which in my case was a huge thing. Trismus was never mentioned either and the need to do regular jaw exercises. It only came up when I mentioned the issue to my doctor. 

Dear Beesuit, 

Thank you for starting this thread. Extremely useful. 

I would add fibrosis to the list. I had radiotherapy on my left tonsil and it affected the muscles of my neck (side of my cancer) and the stiffness is now also affecting my shoulder blade. I need to do regular exercice but also need to have some physiotherapy to help release the tension and the "knots" in my muscles. 

Fab1

Swallow and Jaw exercises are like getting a puppy they are for life not just a few week's at Christmas.
I was lucky that was drilled into me but not everyone gets told this. 
plus the treatment does continue to work there’s no magic  switch once treatment finishes

Hazel 

It’s the gift that keeps on giving. My husband had HPV tonsil cancer in 2017 and was successfully treated. His neck still gets very stiff. He had a tooth out 3 weeks ago and the socket is not healing at normal speed plus it provoked enormous ulcers near the site of the extraction and the radiotherapy. It’s awful. 

Hi Ruth

What meds is the hospital  giving him for this? 

I find I get like a knot or cramp feeling sometime when I yawn - it hits suddenly and make me flinch or say OW! People think I’m strange 

Hi Dani

we have not managed to see the hospital yet. GP has given stronger painkillers and bonjela (!) and says she’ll refer to hospital next week if no improvement. I could not go with him to that appointment and am not happy with this. I’m not convinced this GP gets it. It’s been 3 weeks, nearly 4 and it’s gone on too long. Michael accepted it and says I am too pushy. I would say assertive and concerned - he is also scared and reluctant to go back to the hospital. 

RuthieSun said:

he is also scared and reluctant to go back to the hospital. 

I can understand that but non healing socket, ORN, and recurrence have to be considered and honestly the first is by far the most likely and needs attention. This is not the GP’s responsibility. In any case the average family doctor is not versed in RT late effects. Get him back to the dental hospital. At least you can both be reassured. 
Oh and you’re not pushy. These days we have to be on the ball. 

I totally agree and this is why I have been pushing for a hospital appointment. Thank you for the support… xxx

Good luck Ruth. Ring his CNS and let us know how you get on.