Joe update 9

Joe is fine. Last night he was exhausted, but still couldn’t get to sleep until 8.30. He slept in until 8.30 though. It’s much harder in a room with 4 beds. When Mike TV was in the next bed and his dad came to sleep over, Sue thinks they were still watching DVDs at 2 am! (You can’t see a clock from the beds in here.). He’s 9 years old. She grassed them up to his mum next day and she went spare: she’s separated from the dad. Oops. The following night baby Mo moved into the ward and cried every hour on the hour all night. So not much sleep for Sue. Luckily Baby Mo went home before last night. In fact it was a very settled night, apart from the start.

The start of the night: Joe going on and on and on about food. “No, Daddy, we haven’t worked out what I will have for lunch tomorrow yet!” “What about mash and gravy and a pie?” “No” “What about …” “NO!” etc etc. For any topic of conversation substitute food, and don’t expect to distract him or change the subject. It won’t work. At all. Then lolling on the bed saying he’s too tired to take medicines or brush teeth. That didn’t get much sympathy. Though in hindsight it should have done: he was exhausted. We eventually got through it all, and then part way through the story we fell out over something (can’t even remember what) and he rolled over and started trying to go to sleep. I let him, but it hurt. It’s like he’s turned into someone else, who I can’t communicate with properly. Of course he hasn’t though: he was exhausted, and although the steroids affect his mood and his appetite, he is still Joe really (just a slightly one-tracked, round Joe).

I did feel that Joe’s treatment was taking him further away than any illness had. That was something I had feared from the start. Or rather I had feared that it would make him iller than the illness had. In truth, what it has done is made him fatter, balder and grumpier. Anyone would be able to see the hand of heredity at work there, though. Anyone who knows his dad anyway.

I feel much better today. We have done some of the routine things, which I find reassuring. The transition between hospital and home is difficult, especially when you make it on your own. Sue came home to Norwich upset the other day, and I found last night very hard. Yesterday we only saw each other for a couple of hours before Sue went off back to Norwich.

Joe’s routines:

Getting dressed (he likes to get dressed as soon as he’s up, which is great because it feels less like he’s ill) and arguing over whose pants he’s been given (“These are too small: they’re Sammy’s!” - they’re not - he is temporarily much larger, but what can you say - “You ate all the pies”?).
Take meds (he’s really good at this now, and it goes very quickly when breakfast is in sight) - today 6 syringes and a tablet - all oral - plus a cup of water and two wine gums. Give blood.
Get breakfast - cooked every day now. Sue has moved him onto cooking his own food, to try to soak up some of his obsessiveness. Today it was two fried eggs on two bits of toast. And a fruit smoothie (it’s not 5 a day, but it’s a try)
Brush teeth and do mouthwash (which means going back to the ward) - much better at this too. I dip a sponge lolly in mouthwash and rub it all round the inside of his mouth. It used to be like using a red-hot poker, but he is much better. The citrus Listerine is ok. I tried the stuff they gave him the other day and it really is disgusting. I’m not surprised it freaked him out.
School (10.30 to 12.00) - teachers are nice, but he thinks they work him too hard! He’s used to a day with work spread across it, gradually intensifying. Here he has an hour and a half of work. And the rest of the day to play/learn. He doesn’t notice the rest of the day though. Of course. He remembers Reception as school.
Get blood results. Text other parent.
Lunch (12.00 - 3.00?) - a large number of lunches/courses. Often involving a pie. Sandwiches. Mash and gravy and peas. Cream crackers and smoked Bavarian cheese. Cherry tomatoes (if we’re lucky). Noodles. Crisps. Nothing sweet!
Afternoon - when visitors are usually here. Play Junior Monopoly. Top trumps. Scooting. Watching videos. Out and about.
Evening - dinner - see lunch.
More meds but a vitamin gum instead of a wine gum.
Wildlife TV programme if we can find one.
Bath, sometimes (but the hospital laundry has broken down, no seriously it has). Pyjamas. Story. Bed. Me: Glass of wine in Acorn House plus guitar or TV. Bed on ward.

Fascinating, I know. I am just getting more and more into the detail of what we’re doing. Less of the bigger picture and more of the detail. We need to get out of here, I think.

I have just written this on Kayliegh’s laptop, while Joe was at school.