Saturday 25th September
Joseph wakes with a big, fat grin on his face as he’s spending the day at his cousin’s house in Sevenoaks. He’s convinced he’s famous at the moment as he’s mentioned in the blog so often and so many people are reading it. The official number is well over a hundred, unofficially I have no idea as I’ve had comments sent through from well wishers in Shanghai, Australia, USA and even a nurse in PICU – and no, that’s not a tiny South American country. I sort of know what Joseph means about being famous in that people I hardly know seem to know more about me than my wife does. They keep offering to carry things for me because they know my back’s dodgy or warning me to stay off the Brazilian cocktails. It’s quite surreal and gives you a tiny glimpse of what it must be like to be in the public eye and how dreadful it must be if what’s written about you isn’t true. Having worked with many celebrities in my job over the years and got to know a number of them quite well, I can honestly say that most of what we read is complete fabrication. Fortunately everything written here comes straight from the horse’s mouth so I don’t have that problem. Speaking of mouths, I’m out for lunch today. Once Joseph’s crickets have been fed and watered and I’ve dropped him at my brother’s house, it’s off to London. The plan is to head over to Putney Bridge for bite to eat and then watch Fulham play Everton. An old work colleague is a season ticket holder and her friend can’t make the game – hence the spare ticket. Rather than take my laptop, change of clothes and Josh’s freshly washed blankets to a football match, I pop into our new room at GOSH first to see how Josh is and dump my stuff. Claire’s face tells me everything I need to know about the last 12 hours in a second. Josh has not been good. His tummy has been giving him so much pain, neither he nor Claire have slept. His face is looking very bloated, his eyes are off kilter again and his potassium, urea and creatinine are all far too high. To make matters worse, the doctors are unsure whether he’s wet or dry so have gamboled on giving him more fluids - only time will tell if that’s the right way to go. I feel guilty leaving but it’s too late to back out and I make my way across town. I meet my friend in a pub not too far from the ground and grab a steak sandwich while we catch up on news and gossip. The game is dominated by Everton for long periods but there are no goals and they end the afternoon bottom of the league. By the time I navigate my way through the hoards of away supporters and make my way back to the hospital it’s gone 6pm and Claire has to head straight off to Charing Cross. Josh is asleep and, whilst the room is nice and spacious and light during the day, as darkness descends I suddenly realise there’s a major flaw in the lighting design. It’s either so bright you get a suntan, or you have to sit in complete darkness. Working is impossible as I can hardly see the computer and it’s only just gone 7pm. Looks like it’s going to be a very long night…
Sunday 26th September
A far longer night than even I’d anticipated. Josh is in a terrible place at the moment, and I don’t just mean the room. He can articulate basic needs but seems to have lost his ability to communicate anything more and struggles to say whether he’s in pain or not or why he cries out. It’s a real setback. He coughs constantly setting off his alarm, then the cough becomes a wretch, then his tummy starts to hurt and finally he passes diarrohea and often vomits at the same time. While all this is going on, his oxygen levels drop off the radar and set off another alarm and his pulse shoots up as he starts screaming for water because he’s so dry. Then the clearing up begins. This is pretty much what happens over and over and over and over again all night until 7am, by which time I’m as incoherent as Josh is and my bed, which is as hard as a plank, is in such a mess it could rival Tracey Emin’s infamous exhibit at the Tate. I’m still in my pyjamas at 10am having spent a couple of hours trying to work but getting nowhere fast as it’s a tricky brief to crack and, quite frankly, I’m struggling to even stay awake. Josh wakes soon after and the pattern for the day is no different to last night. There’s still no real explanation for his low oxygen levels although the idea that his distended bowel is putting pressure on his lungs sounds plausible. Josh’s lips and tongue are bright yellow, covered with one of his oral medicines that’s used to coat his gut, but ends up staining everything it touches when it comes back out – either through vomiting or from the other end. Many a hospital floor has been ruined because of Josh’s condition and his bottom is the same colour as Mr Happy’s face. Having spent the last 24 hours cleaning him, my fingers and nails are currently so yellow I look like a 60-a-day Marlboro Man. In the afternoon someone sits in with Josh once he’s asleep and I pop out to buy my mum a birthday card. I normally make them but haven’t had a chance this year and Tuesday is looming. It’s cold and pouring with rain in London and, as usual, being a hospital inmate means I’m completely inappropriately dressed in shorts and a t-shirt. Given that one of my projects is for a charity that helps the street kids in the UK, I decide to stroll around and get drenched to seek inspiration. The hypocrisy of the banks never ceases to amaze me. At a cashpoint I’m advised not to ask for a receipt as the bank believes in saving paper, yet the next screen tells me that to enter a competition to win a luxury holiday in the Caribbean, I need to look at the back of my receipt for details. I’m confused. Josh woke up soon after I left and has been asking for me while I was out and I immediately feel guilty for going. He doesn’t want a bath, but vomits up such a huge amount of fluid all over himself and the bed, we’re left with no alternative. Once he’s in it he’s happy enough, although he’s even happier to come out and be lowered onto his bed, smothered in Waitrose Essential olive oil and allowed to sleep. Although if Claire was here, she’d probably bake him gently for 15 minutes and serve him up with a sprig of Rosemary on a bed of sautéed potatoes. Despite the CSPs best efforts to wake him up as they try to unblock his line, Josh remains in la-la land for a couple of hours. He even sleeps through our analysis of drug names on his list as I try and convince the nurses that the Ondansetron is something Heather Mills performed on last year’s Strictly Come Dancing and that ciclosporin is a Scottish bike race. I work until dusk again before watching another episode of Prison Break, safe in the knowledge that tomorrow I’m breaking out of here and fleeing to Kent for a couple of days…
Monday 27th September
No need to tell you about last night other than it was a carbon copy of the previous one with little or no sleep for either of us. My back went big time at about 4am and since then I’ve been struggling to lift a nappy, never mind an eleven year old boy. At 8am precisely, Josh unleashed a tide of vomit and diarrohea which, as it was handover time, I had to struggle to clear up on my own. As you would imagine, he slept much better after that and was still dozing when Claire arrived. The doctors ward round was just the one doctor and a bit of a non-event. We don’t really know anything at the moment. Whether the fluid around his heart is GVHD or not, whether he has GVHD of the gut or if it’s the return of his Crohns, why his hearing has deteriorated so much, whether he’s deteriorating neurologically or not or even whether he’s wet or dry at the moment and needs fluids or not. Once I’ve gone, the day proves a bit of a balancing act for Claire. The physios tried to switch Josh’s gym trip to 1.30am knowing full well that’s when his teacher comes, so she moved it to 2pm. Audiology called to say they could only see him at that time, so physio was then cancelled only for his audiology test to be put off until another day as his hearing has deteriorated so much they wanted to do some more complex tests to ascertain what the cause of the decline is. Claire has volunteered to do 3 nights as I have so many work projects coming up that I can’t really wriggle out of them and it’s almost impossible to work at the hospital with Josh being so demanding during the day and night. The only times he seems to settle are at 7pm for a few hours, by which time it’s too dark for me to see what I’m doing without blinding him and putting all the lights on, and 7am when he generally drifts off after being awake most of the night. If he continues in the same vein, I may have to come and rescue Claire as 3 nights without sleep is a little too much for anyone to bear. At home I manage to make a start on one of the jobs I have on as Joseph is at a friend’s house after school. Even better, another mum whose son is playing at the same house volunteers to drop him off which gives me a further 30 minutes. I’d promised myself I’d carry on working once Joseph was asleep, but I’m typing this with him nodding off beside me and can feel my own eyelids getting heavy too, so it just might have to wait until the morning. Now, how many sheep did I just count on the ceiling again ?
Tuesday 28th September
In the end, I neither slept nor worked but managed a bizarre hybrid of the two which meant I managed to drag myself off the bed and downstairs to start thinking , but kept drifting off then waking, drifting off then waking until the early hours and achieved very little. Once Joseph’s at school today instead of going to work, work comes to me as the rest of the team travels up from London and even further afield for me to talk through the ideas I had yesterday and this morning. All went well apart from me buying lunch for everyone from a local sandwich shop I’d never used before. There was nowt wrong with the sarnies or the politeness of the staff, but quite frankly I could have driven to Marks and Spencer in Bluewater and back in the time it took to make them and there were only three of us. Joseph had swimming after school today and it was my first chance to see him with his new instructor, who now gets in the water with them rather than shouts from the side. He still looks like he should be growing shallots and marrows in the allotments behind the leisure centre, but he’s doing a good job and Joseph’s definitely improved in the past couple of weeks. Joseph and his namesake stay behind after the lesson for another long play and I have to rustle up spaghetti carbonara for us both in double quick time to still get him in bed before 7.30pm. He requests a made-up story again rather than a book and somehow still manages to be awake by the time I finish telling him about Joseph and his amazing crickets trip to the moon. They can’t half hop those crickets to make it all the way up there in one bound. Josh and Claire had a good night last night and both slept well although Josh remained tired throughout the day. They haven’t changed his anti-nausea drug yet and although he’s vomiting less, there are now rather a lot of blood clots in it and coming out of his stomach when he’s aspirated. He asked for a bath today, but the hospital boiler is under maintenance again and there will be no hot water until the end of the week, which is ludicrous on a ward where BMT patients are meant to have baths every single day for medical reasons. Regular readers will know the old boiler in the basement is in worse nick than Dot Cotton and this is not the first time it’s happened. Nor the last, the smart money says. Josh didn’t make the gym today but sat up on the edge of the bed on his own and managed to stand up supported by two nurses. The doctors are still unsure whether his fluid balance is negative or positive, so poor Claire doesn’t know whether she can give him water when he calls out for it or not. He had a series of hearing tests today, which they’ll repeat again tomorrow. There’s a possibility that it’s the drugs he’s on that have affected his hearing but we don’t know for sure yet. The tests themselves are done when he’s asleep and a brain scan through an electrode registers whether he’s heard the sounds played or not. This is all very clever and far more sophisticated than having a doctor whisper whilst covering and uncovering your ear with his hand several times in quick succession, which is how I was tested just a few years ago. And that was going privately too…
Wednesday 29th September
Managed to stay awake until past midnight and get enough work done to enjoy a visit to the gym after taking Joseph to school. I say enjoy, but my back says otherwise and decides to make itself heard. A long, hot soak in the Jacuzzi soothes it back into submission. After that it’s work, work, washing and work. There’s a big meeting coming up with our charity client on Thursday and I want it to go smoothly. I’m done by 2pm and venture out to Bromley to stock up on chocolate milk at the 99p shop for my next stint at GOSH. Joseph’s being picked up by a friend’s mum today so I have a few extra hours to get things done. News from Claire is mixed. Josh had another good night and is being a real star as usual. He’s still vomiting blood, but a little less often. Today he ventured out of the ward and along to the hospital’s gym where he managed to sit up by himself and then stand supported on the parallel bars. He took direction well, throwing bean bags overarm and underarm when requested and even did a few slam dunks into a basketball hoop. He didn’t quite smile, but Claire said he looked rather pleased with his achievements. He also had a good session with his teacher today. The low point, and it’s devastating news, is that after another two and a half hour hearing test, the conclusion is that Josh has moderate to severe hearing loss in both ears, which explains why he doesn’t hear much of what we say at the moment and keeps saying pardon. Worse than that, it’s their belief that his hearing problem is most likely down to one of several drugs he’s on and in most likely permanent. They are fitting him with hearing aids. Having had first-hand, or maybe first ear, experience of hearing aids I know just how awful they can be at the best of times. It will be a nightmare for Josh at first and we will have to take them out at night anyway, as they whistle whenever you lie on your side. His hearing could deteriorate even more unless we can work out which drug is doing the damage and try and take him off it. Easier said than done as it’s listed as a possible side effect of quite a few of the major drugs he’s on. Not that they actually tell you about the risks of any of the drugs. We only know because Claire always Googles them on her iPhone. More often than not the doctors don’t even know all the side effects, but it doesn’t stop them dishing them out like Smarties at a kid’s party.
