Have not contacted you lovely folk for a number of weeks now. My sister Jo is now 8 months post treatment 30 rt and 2 x chemo. She is no longer able to eat or drink and at this moment in time is peg dependent. Her treatment has affected her hearing and for many months now she is rinsing her mouth and throat in an obsessive compulsive way. The honest truth is she does this non stop all day and most of the night; constantly rinsing and spitting. She fills buckets full of water and ice cubes also will try various other sodas but it really is so sad to watch her. She seems tormented getting fluid just so far down her throat then spits it up. She knows herself she is not right but it does not seem to make any difference. We tell her doctors and dietician this at her six weekly visits but they do not seem concerned. She just wants so much to be able to drink but has been told that her throat muscles have stopped working...She was so sad in the clinic today that finally they said they will have her in to see if dialation will work; I hope and pray that this may help her but she seems so sad and depressed. She has seen a psychologist but did not feel this was doing her any good so she did not return. She is aware that in saving her life she has had to forfeit something but is so into herself and with her deafness and the compulsive drinking and rinsing this cannot be right. We know she has to help herself and today I tried a bit of tough love to encourage her to take more water through her peg. She trembles non-stop...but the most worrying aspect is the rinsing I can honestly say she rinses and spits gallons and gallons of water throughout the day and night...She also has treatment induced sleep apnoea...I really did hope that when I last contacted you lovely guys she would have improved somewhat by now. It is not regular rinsing and spitting. It is constant every single minute of the day. Has anyone else experienced any of the above symptoms post treatment to this extent? Her mouth and throat are so dry all the time.....

Very best wishes to you all.

Kathie UK