Wheels on the bus

The boy had a lie in. But was awake for two hours in the night. So, both things sort of balanced each other out. Although he started the day reasonably cheerful, that soon dissapated.

He needed paracetamol and ibuprofen twice overnight, as his heart rate was going up (but no temperature). Indicative that the pressure in his head from the tumour is hurting him, or at least giving him discomfort. We are going to give it on a regular basis now to see if it improves his moods.

When I take the trachy cuff down, he talks as if he was a less comprehensible Marlon Brando in the Godfather. Balance as bad as yesterday. But a bit more cheerful than yesterday afternoon.

Post brings an appointment for his next MRI and associated clinic appointments. All arrived in the same envelope but little evidence of coordination as clinic is at same time as MRI. All are pretty futile as things stand. So, try to ring oncology outpatients to cancel. Get through
eventually but am not confident that the young man I speak to has cancelled them. He gives the impression that he is being asked to pilot a space shuttle rather than a computerise booking system. I may be being unfair and it is just a reflection of my impatence and the pain that the MRI is now so unnecessary.

The hospice come for a couple of hours. He sems happy to play a jigsaw and wave us off. Allows us to go out for an hour to discuss me returning to work and support for the wife. When we return we find that the jigsaw did not last long and most of his time has been infront of the TV.

We do pretend cooking in the afternoon but he needs a supportive chair to do so. He is listless and perhaps bored. So many of his toys are useless now. So, it's either cooking or painting. Will have to think about what is appropriate for a child in a chair.

After one abortive attempt to go to the shops (we get across the road before he decides to go back), we do eventually go and watch for buses on the way back.

Bathtime is a trial as he refuses to have it, writhing on the floor. We tell him he won't get a second chance and put him to bed. A little while later he changes his mind and wants the bath. Tired of the constant battle we refuse, whereupon he rages round the bed wanting the bath for some time. Intermittently begging please to have the bath. Eventually, it subsides and he accepts a nebuliser and is quickly asleep. Unhappy end to the day.

Find myself more easily upset than before. It is such a strain and I'm not currently coping very well. Everytime a friend or a medical person rings and I have to go through the situation I can barely stop my voice cracking. The wife goes for her regular sessions with a psychologist. I don't anymore, but that's a story for another day.