Sunday, 1 July 2007

Abandon (Junior Boys Own Mix)

On my own with the boy today. The wife's gone off to a healing event with her sister.

Been a tough week after the emotional wear and tear of Monday's meeting. Had myself a renewed bout of agonising about whether we should have put him back of chemo, even without curative intent. Renewed guilt about not being able to save him. About not doing more to seek out new treatments. I should be contacing specialists, someone, anyone. But I don't know where else to go.

Want it all to go away. Want to believe that how he is now will last forever. Want normal problems. Want to worry about university fees not funeral fees.

None of which thoughts were helped by having to manage on three hours sleep midweek when the night nurse didn't turn up. With his cuff inflated he can't call out and so has to be watched. The wife did until 11pm. I did until 4.30am. She did until 7.30am and I did until 9.00am. And then I went to work. Hard to get that sleep back. Especially as I have offered to forego my lie in so the wife can make up for her sleep tomorrow.

Weather was awful. Heavy rain with very short periods when it stopped. The boy was keen to go out. So in a rainbreak I bundled him up and we went to the station to go on the train. He was very excited. So much so that he did not want it to end and kept asking "more train?" as he was worried we would get off at the next stop. Went to Borough Market. Bit of a mistake. Too crowded for the buggy and he spent the whole time complaining for "more train". Were only there less than half an hour.

The boy was sooooo happy when I gave up and we returned to the station. Happy to wait on the platform for a long while and let trains come in and go out. I wasn't bothered, since we had nothing pressing to do, except make his medicines. Eventually, we got on a train. Like a proper little Londoner, he wanted to stand up. Considering his balance is so poor, he did pretty well. Then, to make the experience last longer, he got off the train. We sat on the platform and watched more trains go by before getting back on a train. Two stops later, we repeat the experience and so on until our station.

Was pretty wiped out by the time the wife got home. Nevertheless, had managed to buy enough food for a nice meal and a pricey bottle of wine for her. However, as we were getting the boy ready for bed, the nurse called to say she was stuck in traffic and didn't want to come. Not impressed. After some frantic calling round we found someone who was prepared to come. She turned up at 10.15pm, so the nice meal got iced and replaced by readymade pizza. Couldn't even be bothered to have some salad as a pretence at healthy eating. And so to bed.

No comments: