Monday 2nd August
Not sure of the exact figure for people on benefits in the UK, but it’d be far higher if you could actually make a claim. It appears we’re eligible to apply for tax credits, although it’s too late for last year. To do this I need a claim pack that can only be requested by phone. I’ve been trying for 2 months now and keep getting a message telling me all their advisors are busy and to call again later. There’s no queuing system or option to hold, so I’m guessing the only people who get through are organized crime syndicates making fraudulent claims, as they’ll be the only people with enough time to phone often enough to get through. I’d try from hospital but it’s an 0845 number and I’d probably rack up more than we could claim. After an hour I give up and Joseph and I go swimming. I’m spotted by a friend in the changing room and we exchange pleasantries – fortunately neither of us are completely naked at the time. When I arrive at Great Ormond Street, Josh is being weighed again. I’d seen the photo but missed the event last time. The nurses and Claire do an excellent job considering none of them have a PHD in engineering which is what the task would appear to require. 40 minutes later he’s lowered back onto the bed and Claire and I get a chance to say hello. Josh has been far more comfortable over the weekend but is still unresponsive. It’s a real worry and I’ve come armed with questions for the head consultant. Actually, they changed consultants today. It’s a good idea as it brings fresh eyes to the case. We know and like the new boss and sit down for a real clear-the-air chat about Josh’s decline and how recoverable they believe the situation is. We come away feeling far more positive. The rest of the day is relatively smooth. Josh has a couple of minor itching bouts and needs several morphine pushes for the pain, which they believe is a gut infection now the pancreatitis has subsided. He’s been awake more today than for some time but otherwise there’s no real change. I have an early night and enjoy a good 8 hours of only slightly interrupted sleep.
Tuesday 3rd August
The day begins with clear blue skies but becomes cloudy and gloomier by late afternoon. A fair reflection of the mood in our room. Josh is still not responding to either conversation or touch on any level at the moment but remains clinically stable. Apparently he was itching a lot in the night, which is news to me. He certainly wasn’t crying out otherwise I’d have woken and he’s hardly been itching since, so it’s difficult to say whether it’s the return of his GVHD or simply an overreaction from the nurse last night. Either way, the doctors now feel they have to increase his steroids again which isn’t good news – especially if it is a false alarm. They also want another skin biopsy in the hope that they’ll learn more this time. Can’t remember if I mentioned it before, but the first biopsy left Josh with three circular scabs on his arm that look like the kind of marks replicants or androids have in sci-fi movies. Everyone in the hospital that’s seen the marks has found them more baffling than crop circles, which is a bit bizarre as you’d think they would have seen the procedure before. They’ve promised to try and make it less visible and less weird this time.We shall see. Our daily visit from the physiotherapists happens mid-morning and they’re pretty vocal, as usual. They bark out orders, tell the nurses off, sit Josh up and then reposition him in bed before riding off into the sunset. He generally lasts about 2 minutes in their favoured position before wriggling into a more comfortable one. After they’ve gone, one of the nurses returns to ask me how I’d feel about hoisting him out of bed and putting him in a wheelchair for the rest of the day. It’s a terrible idea, but the physios have recommended it, saying that it will ‘help Josh distinguish between night and day’. We decline the offer for now. I manage to venture out in the afternoon for 20 minutes while a nurse sits with Josh. There’s a mini section of South African landscape outside the British Museum as part of some exhibit and I sit there stuffing my face with chocolate. And no, it wasn’t a Lion Bar. It’s all quiet on the Western front when I return and it’s only when one of the nurses mentions that Josh hasn’t opened his eyes today that it all goes pear-shaped. We try sitting Josh up, calling his name, pinching his shoulder, putting cold compresses on his eyes, anything and everything just to get him to open them. He raises his eyebrows a few times and his eyelashes flutter but he either can’t open them or doesn’t understand the request. Either way it’s not a good sign. When we force them open and shine a torch on them they react, but are pretty much pinpricks which could be due to the morphine. The doctor that arrives is out of her depth and keeps asking if this was discussed in the ward round, which of course it wasn’t. She does a few tests that don’t appear to have anything to do with the problem, but what do I know. His painkiller is switched from morphine to a synthetic morphine, which was going to happen anyway. About 3 hours later our regular doctor returns to reassure me and talk about pain management for the night. There’s an MRI scheduled for Friday. Hopefully it will show no change. It’s a long, uncomfortable and unsettled night. Josh moans in his sleep and scratches occasionally, but is obviously in severe pain at times. Due to either busy or forgetful nurses, the painkiller pushes he can have 3 times an hour are never done more than twice and by 3.30am he’s crying out consistently. I sit by the bed and rub his tummy and head which soothes him to some degree and ask for the painkiller to become continuous as we discussed earlier. The night doctor arrives at this point and just stands by the bed not saying anything and looking very nervous. She’s just arrived from Switzerland and when I ask what can be done to help him she starts a sentence that contradicts itself 4 times before she finishes it. When I ask her to clarify what she’s proposing she says her English isn’t good enough to explain, but from what I can gather she wants someone else to make a decision which wouldn’t happen for another 5 hours. I tell one of the nurses who immediately calls the pain management team. What they do helps enough for us to grab an hour’s sleep before Josh wakes up distressed again at 6am. By then it’s daylight and there seems little point in me even trying to climb back into bed.
Wednesday 4th August
Morning turns into afternoon before Josh is pain free and settled again. By this time the doctors have been round and Claire’s arrived. Josh’s face is red and heavily swollen and his eyelids are dark and puffy, presumably from scratching. They carry out another x-ray of his abdomen in the room. We should get the results later today. Claire and I catch up. She had a close encounter with some weird insect at home last night which must have settled in her pillowcase while it was drying on the line and kept her awake with its buzzing half the night. I head for Charing Cross and come across a huge hedge maze that’s been built in Trafalgar Square. The hedges aren’t real, but they’re 8 foot high and it’s pretty impressive. It’s only there for 5 days though, so by the time you read this it’ll probably have gone. I just about avoid getting soaked by a tropical downpour, which must’ve blown in from the South African garden up in Bloomsbury, and jump on a train. I must’ve been preoccupied as it’s not the right one and I end up getting soaked at the other end walking from Bromley North to Bromley South to get on another train that takes me home. Joseph’s at a friend’s house as usual and is less delighted than usual to see me as he’s watching Spiderman 3 and wants to see the end. Given that he’s seen it umpteen times before, I drag him home and we play Mario Kart before bed. The Luigi brothers remind me of the two Italian doctors currently looking after Josh. The senior one’s called Robert ( surely that should be Roberto ?) and his sidekick is Guiseppe, who hopefully isn’t as sloppy as his Pizza namesake. Claire calls to let me know that Josh finally opened his eyes when they tried to sit him up. It’s good news even though it only lasted a couple of minutes. The abdomen scan shows Josh has a big backlog of poo that needs shifting as quickly as possible. She’s unsure whether to go for an enema or a suppository. Decisions, decisions, decisions…
Thursday 5th August
Well done, Virgin active. Not often I say that, but I’ve just discovered that Joseph gets free crèche time during the week as he’s a member. I say crèche but it’s an activity club for older kids and means I can now get to the gym now and again when I’m home and the last two months won’t go to waste. We’re there for 9am and I get an hour’s workout while he gets to play. After that it’s swimming and then home to draw, build, paint, play and iron for the rest of the day. Okay, we didn’t iron together but he was in the room watching TV. Claire calls to say that it wasn’t a good night at GOSH. She finally got to bed around 5.30am as he’s still crying out and the new painkiller wouldn’t appear to kill pain – not even after they upped the dose three times. The suppositories kept slipping out and his nose and bum have been bleeding. They tried an enema but that made him bleed too. He opened his eyes again for a short time which is good to hear, although if they attempted an enema I’m not surprised ! A gastro doctor has been up today and said they have to stick with the laxatives rather than trying to force things. They’re switching him back to morphine tonight too, so hopefully both he and Claire will sleep. Hopefully he’ll empty himself out before my stint too.
