Hey Olddoug Sorry to hear you are having a tough time.  I am a bit over 18 months post treatment now.   I found the first 12 or so months post treatment pretty hard with difficulty eating, no taste, and jaw/ear pain from ulcer infection at radiation site in throat.   I tried a few different options for dry mouth treatment too but found for me it was easier just to have a glass of water next to me to sip during the night.  Still have saliva issues but they have lessened, and always drink alot of water whenever eating.   Still wake up a few times during the night to cough up stuff and get a mouthful of water but definitely not as much as in the first 12 months.   Just wanted to share my experience - and wish you the best. Ben0 ... View more

Thanks Jen  ... View more

Thanks April Just hearing from others who have gone through this is helpful. I had my feeding tube removed on new years eve. So about 7 weeks ago. Which was a fantastic relief! My diet is mainly softer foods such as porridge, coffee, fruit, eggs, salmon and soup. All with a glass of water. Like others I feel my tastebuds are returning just some things taste different. I also have gone back to including 2 or 3 sustagen drinks this week in order to try and stop my weight slipping further, and due to difficulty eating solid food. My jaw definitely starts to ache when trying to eat combined with the trismus and soreness when trying  to swallow. Do your spasms result in you biting the inside of your cheek or tongue? ... View more

Thanks Marie, appreciate response. ... View more

Thanks Marie Guess I just need to be patient. Am attempting stretching exercises but pain limits how much I can do.  The crazy thing is in the initial period post treatment doing the jaw exercises I nearly got back to fitting 3 fingers in my mouth and then suddenly lost it all again.  I am also back biting the inside of my cheek involuntarily which I don't understand. Thanks for the reply Ben ... View more

Hi all I am week 14 post treatment. At the finish of my 35 rad + 2 chemo treatment I slowly started to improve until week 10 post treatment, when I abruptly started to have a sore throat worse than at any stage during treatment. This is combined with severe trismus. I can just open my mouth to fit one finger. I have read previous posts in this  thread about people getting late radiation side effects post treatment which has eased my anxiety a bit and to be patient with recovery.  I trying to maintain my weight. I am taking panadol for pain. I tried liquid ordine but it gave me severe abdominal pain. Any response from those who have similar experience appreciated as I am worried if throat and trismus will improve.  I am still waiting for my 3 month scan to be done. Thanks Ben ... View more