Hi, Kris had a reocurrence of his base of tongue cancer 12 months post diagnosis . In March '12 he had a total glossectomy and Laryngectomy. Kris has a permanent tracheostomy, he also has a PEG feeding tube.
He is able to swallow and takes half his nutrition by mouth. He just sort of pours it in, tilts his head and down it goes. The Speech/swallow therapist told us she has no idea how he does it as it it goes against all she has learnt about the muscles used when we swallow. Kris wont do this in public as he thinks it not only looks weird but that he dribbles some. Somedays I have to nag him to swallow. To me, how he swallows doesn't look to different to someone who is thirsty and swilling back the fluid. However Kris does struggle with it. I think this is just because it is so different to how he has normally eaten.
Depressed? Of course. Anyone who has gone through such a major bodily insult with such huge lifestyle changes as a consequence will take a longish period to adapt and accept.
I have nurtured and encouraged Kris all the way, but now it is time for me to step back and let him get on with it. He has to learn to cope and manage his own cares. He will only become independent by doing for himself. Is this difficult? Yes, for both of us but I have to be cruel to be ultimately kind. We are nearly 3 months postop. He has to take charge of his life. Sometimes I feel quite guilty when I leave him too it, but I believe that this is the only way for him to accept and cope and adapt. You know what? He is taking charge and coping - mostly. Your Dad will too. Just continue to encourage and cajole and know that this takes time. It is not easy, a hell of a road really. Just be there and let him know he is loved and wanted. Thinking of you all.
Tammy