I think if you asked my mother what has been the worst part (so far) she would say the not being able to eat / taste / sustain herself. The it would be the speech. Before all this started, my mother used to go give talks to various groups about Charles Dickens and other topics and now she can barely speak properly without dribbling or coughing.
I would also add that both my mother and dad (her carer) felt isolated once they had stopped radiation. One minute they were there every day and the next thing they we sent home with a feeding machine and boxes full of Jevity and more or less left to get on with it. She still hasn't really had any speech therapy or detailed nutritional information.
She has been to the support group Croakies and felt that useful, but other than that, they just get on with it.
Thanks for your dedication to the cause Dr Joshi.