Health bulletin

Posted July 31st, 2009 by Jane

I have mentioned, though not named, the bush telegraph which passes on information about my ‘condition.’ I am always mildy surprised when somone rings up to say how pleased they are the pain is better..hey hang on a minute its not. Others are looking for magic from the chemotherapy and seem mildly put out when there are no miracles to report. What a failure I am.

So this is how I am at 10.30am on Friday July 3oth as I reflect on yesterday.

I had a dreadful 24 hours. R. and I stayed in London Tuesday/Wednesday and after cream tea at Claridges and the Gay Icons exhibition at the National Portrait Gallery, we had to return home because I was in awful pain in my back and shoulder the whole time. (Thank you for the wheelchair National Portrait Gallery) My body is very weak and the lynchpin of being able to get round London, the black cab, was a nightmare. I could barely get in and couldn’t get out, There were several horribly embarrassing incidents: me stuck in the door like a vertical beached whale, being unhepfully pushed from behind; me on my knees trying to struggle out. I am sure there is some way that a black cab can be made more accessible for people like me: I just didn’t discover it this week.

So I’m in pain and its gruesome. Next, I an doped up to the eyeballs. I fall asleep instantly, all the time. I eat a meal: I fall asleep. I take a phone call: I drift off while the other is speaking. I have started to talk nonsence; I have bizarre muddled dreams which then get mixed up with reality. ‘Is D living with us’ I asked R. D is my brother who I see every few years…you get the picture. I don’t know what day it is, I don”t know who I am…difficult to describe except its horrible.

Yesterday was the worst day..I muttered incomprehensible rubbish and kept falling asleep. I had gone to bed at 11.00. I woke at 9.00, at 11.00, at 1.00, at 3.00. at 5.00 when I finally got up. Now ‘getting up’ is a struggle. It takes for ever to decide whether to have a bath (Can’t easily get out) or a shower (involves standing up and shower too small for chair), for ever to dress one handed. Still by 6.00pm I was ‘up’. I ate some food and fell asleep. At 10.00 I went to bed having slept and mumbled most of the evening.

Please, if you are reading this don’t blast me with helpful hints on accessible baths and taxis. That kind of information is easy enough to find. No, be imaginative, try to empathise with how horrible this is, how sad and upset I am. R. was really scared last night because I was talking such nonsense in such constantly sleepy waves. Was this, she thought, the beginning of my end? How bad am I really? Why can’t they sort out the pain? What’s causing the hallucinations and jerky limbs?

These are hard sad times. Tomorrow might be different.