←Back to Julia's Diary

Friday Night 8.15 staying alive


My body is just incredibly shocking. I can’t believe it can look and feel so different so quickly and in such a short time. Both legs are very thin like twigs with podgy ankles and swollen toes. My tummy is like a children’s toy or a Dickensian gentleman’s pot belly. My upper body has thin chickeny arms and sticky out bones, and I am completely yellow, especially my eyes which are a livid ochre yellow. I could frighten children – and I like children. My little niece Ester and her sister Naomi came to see me today bringing drawings and books of activities to do when I was bored. I imagined what it must have been like to see this scene from a child’s view from the ages of 5 and 8. It could be quite traumatic and a strange thing that one finds oneself writing about in a writing class years ahead. Then the nurses arrived and gave them lots of attention which would add to the general strangeness of the incident.

So what’s the prognosis? I really really really want to get to the launch of the First aid kit for the mind at the Biscuit Factory next Thursday the 14th. I am using that as a focus to take me forward. Of course no one can tell me, or ever could how near my death is, but surely a body like this doesn’t belong on the earth. We’ve bought champagne for the box launch and goodies and Emma and Smart have done so much to make postcards and posters. So if you are praying for me pray for me to have next Thursday – rather shallow though that may sound.

So much can happen when you lie in bed doing nothing. Although we’ve cut down on visitors I still really want to see people, but like in glimpses just to tell them how much they meant to me, for them this is like a boring santa’s grotto with no presents (or they bring the presents). So don’t all rush round. I must say every card I have received has been different. There’s been no replicas, which I think is an amazing thing and I appreciate people searching through card racks, getting out the crayons, making home made books, and really eccentric funny presents that have made me laugh, and of course the music which I sometimes listen to all day and night as I drift through half dream conversations that I’m often not sure if I’ve had or not.

I hate cancer. It’s taken me away from such life. Tonight I’d like to strangle it the way that it is doing to me but I must look at the dark horizon of chimneys out of the window and imagine what is beyond. But count your blessings – a. No pain unless I try and dance the hokey cokey. b. fantastic cusine cooked by my mother. c. No family arguments. d. No fear. e. Cornflakes and milk. f. Trina’s ice cream. g. my new NHS bath seat and squashy mattress. h. You only have to do death once.

I know everyone worries and may have trouble finding out about what’s happening and there are times when it is just really hard to talk on the phone or be bothered to check email but I am still here.