‘How are you, Andrew?’ Many people asked me this at the recent Advent Fair. It’s good to see everyone. I answered that it’s getting more difficult. Here is the longer answer.
‘It’s good to see you, but extremely difficult to be at an event, which I enjoyed as a fit man. I am continuing to get worse, and it’s even painful to nod my head and cough. I can’t tolerate being in most heated spaces. I can’t clear phlegm from my throat and mouth anymore, so the nurses do it. My tongue gets a build up of thrush, which is managed by drops and brushing. It’s still often uncomfortable. I cough sometimes and that causes painful heartburn. My lips and mouth become dry, which we manage with sticks and sprays. I enjoy the feeling of water when the carers clean my teeth. I am disconsolate that I can’t do much with Jane and our kids. We have some laughs. I’m proud of them. It’s impossible to have normal conversations with the eye gaze computer, though of course it’s great to have it. I rely on the carers and nurses to be able to adapt to my changes and to know my needs without me asking. I am ok with not eating and drinking anymore. My world and horizons have shrunk dramatically. I haven’t lived in the house for sixteen months, and I miss home life. I enjoy the time I spend with the family. I wish I could fulfill my parental responsibilities. Some people continue to make a real difference, others vanish. The illness is a real shame for me, Jane, Valentina, Sebastian and my parents.’
When people asked about how I am, I was having trouble keeping cool and warm, phlegm was coming and going and my neck was tired from nodding and looking to the side. Despite all, it was good to see everyone.