Hello to Hugh's loyal fans. I apologise that I haven't posted regularly as I had intended to do so. It is just too hard to write often about my brother's fading life - to imagine what he would want me to say to you - instead I am flooded with my own thoughts and feelings about his predicament - and what his illness means and will mean for his wife, little girl and for my parents. Hugh is indeed alive and he, his wife and little daughter continue to live with my parents. He has now completed a 6 month course of palliative chemotherapy which has worked in that the tumour is again being held at bay. However, as the specialist said might happen, the treatment hasn't returned him an increased quality of life. He spends his days mostly on the couch, listening to the radio and writing in short bursts by hand. He feels too unsteady to sit up for too long, but manages occasional trips out to our local village and can mange to visit family. He was unable to use the voice-activated software we organised for him - learning new skills has proved too difficult. Despite the ravages to his brain from the treatment and the cancer, he is remarkably lucid and sociable, although he tires very easily and dozes a lot. Amazingly he is in no pain. He needs some steroids to help him to retain some steadiness with mobility and to keep hallucinations at bay. The specialist says the treatment is likely to work for months not for years. In the meantime Hugh faces all the health risks of being so sedentary and a few months ago he was in hospital for a week with clots in his lungs. I will let you all know how Hugh is and if his life is shorter than my own (we all live with uncertainty although like most of us are spared having to acknowledge how fragile life is on such a day-to-day basis) I will let you know of his passing so no need to scan the obituaries! For my husband and I, we try to companion our family as best we can, at odds with and surrendering to the lessons of patience, kindness and tolerance.
with best wishes to you all, Hugh's sister, Catherine