Hi all, I have actually seen some improvement but mainly because I went to my local Head and Neck support group meeting and there was a speech therapist present who was talking to my cancer nurse. I explained the issues I was having with swallowing and the sensitivity to toothpastes and certain flavours etc and through this got seen by the speech therapist and had a videofluroscopy done which showed where radiotherapy had damaged the base of my tongue. From this I now have speech therapy every 2 weeks (my choice) to learn to do lots of exercises to strengthen and stretch my tongue. I have been doing all the exercises religiously and am noticing a difference. I also have to write up a food diary and try certain foods that aren't sloppy but now use these to help my hard swallow exercises. I will have to do the exercises for the rest of my life but they are giving me confidence back which is brilliant. I can now move my tongue around inside my mouth more ....still a work in progress though. I also use Xylimelts every night before I go to bed and in the morning I have more saliva which is great, I also use them an hour before I run too. Also using a toothpaste and mouthwash for dry mouth which I get on prescription.
There are positive things you can do to help improve your quality of life, it's just asking the right people and sometimes pushing for that help.
Unfortunately I do understand that after 5 years, the support isn't there, however it isn't the hospital's fault as they have to deal with the multitude of patients being diagnosed......
Wishing everyone well though. Best wishes, Karen