Monday 13th September
Joseph trots into school proudly telling anyone and everyone within earshot that he has a cricket for a pet. Yep, ‘crickey’ survived the night in his makeshift home with a slice of apple to munch on and a damp cottonwool ball for water and today I’m on a mission to find him a better home before he croaks. My plan to squeeze a quick gym visit in first is scuppered when Claire texts to remind me ‘Aga man’ is coming at 9.15am. It sounds like there’s a new superhero in town but it turns out he’s just a maintenance man for our Aga who’s only superpower appears to be arriving on time – no mean feat these days. Once he’s relit Claire’s fire, I race off to Bromley only to find the 3 shops that sold fantastic bug boxes 2 weeks ago no longer sell them because it’s Autumn. I eventually find one hidden away at the back of a discount bookstore. It’s not what I had in mind, more one bedroom flat in Lewisham than Chislehurst mansion, but hopefully neither Crickey or Joseph will care. Armed with 4 packs of Deadly 60 cards I rush home and just have time to introduce the cricket to it’s new habitat before I make the train. Josh is sitting up when I walk in but desperate for a sleep. Dr Claire’s theory about his parathyroid gland was a good one, but they did investigate this initially and found it not to be the case. Elsewhere, the TVs have been deemed safe and Claire was told it was a complete over reaction on the hospital’s part. There are some real glimmers of Josh’s old self during the day which is wonderful to see but also a sad reminder of how much of him is still absent. The play specialist covers for me while I go for a massage at 3pm, although there’s nobody there until nearly half past. I need a good old workout on my lower back and that’s exactly what I get. So low that the masseuse decides it’s best to pull my pants half way down my bum cheeks just as a nurse walks in thinking the room’s empty and looking for a syringe. She’s currently in ICU recovering and I’ll visit her tomorrow if she doesn’t find my presence too traumatic. Back in our room, Josh just can’t get himself to sleep. He grumbles through his physio session and is desperate by 6pm. We give him his night time wonder drugs at 9am but he throws them all back up all over himself and the sheets. By his standards it wasn’t a terrible night but I don’t think a single hour went past without me getting up to tend him several times. His understanding continues to improve and at one point he reminds me I said he could buy Fifa 11 on PS3 when it came up. I told him that when we were all convinced he had no comprehension of who we were or what we were saying, but will gladly honour my promise as soon as we’re out. Poo and vomit comes thick and fast during the night, particularly thick, and I have to change the sheets 2 more times before dawn.
Tuesday 14th September
There are times when I wish I didn’t write everything down and this is one of them. I feel I’m on the brink again. Josh is so itchy he’s beside himself and it feels like every minute for the last 24 hours I’ve had to change him or get him something or change his position or listen to that incessant bleeping from those damned machines. I’ve had little sleep, no help and am struggling pick myself up at the moment. I won’t go into all the details, but here are a few examples. Josh’s Hickman line has never been properly looked at and still gets blocked which means some of his infusions just occlude and won’t go through. Instead of investigating the problem further, today’s nurse tries to busk it as she’s busy elsewhere which means I have to press a button to stop the machine screeching and allow another microscopic amount of fluid through Josh’s line every 30 seconds. It takes 3 hours for 10ml to go through which means I’ve been up and down 360 times. The maths is so basic even Joseph could do it. Finally I find someone who knows what they’re doing, who flushes his line and the remaining 5ml goes through in 5 minutes. The noise, let alone the monotony, was enough to drive both Josh and I mad. To give you some idea of how the day’s going, since writing the first line of today’s entry I’ve changed his bedsheets, mats and nappy another 3 times on my own as just about every nurse on duty today is either pregnant or had an operation and won’t lift him. Quite why it means they don’t come in to hold a sheet or even pull a nappy away I have no idea. The nappy’s don’t fit and leak over all the sheets because there aren’t any medium ones on Fox and, despite my pleading, nobody’s even looked on any other wards. For the record, the small nappies wouldn’t fit a Yorkshire Terrier and the large ones would be baggy on me. I’ve got several jobs I need to get on with due to prior commitments but the one hour I’ve booked a volunteer to sit in with Josh disappears because the doctors are running late and I have to be here when they visit. I haven't left the room now for nearly 24 hours and I think I'm coming down with cabin fever. Twenty minutes later I’m told I was misinformed and that the doctors left the ward half an hour ago to go to a meeting. I’m so close to losing it by now, laughter is the only response that won’t end in a law suit against me. When they do come round there’s little new but it’s generally fine. Josh’s rash is not looking good and driving him potty but it’s impossible to say if it’s GVHD or a reaction to one of his many antibiotics. His Risperadone will stop which should halt his shaking and quosh his thirst. His calcium is down and they’re looking to reduce his fluids. His neutrophils are back after a boost last night and will hopefully continue to attack the JC. The fluid around his heart should disappear naturally and isn’t currently affecting how it functions. The only bad news is that Robert, our main contact with Josh who has been absolutely amazing throughout the last 2 months is leaving the ward until December. So, why do I feel so miserable and fed up and deflated ? Well, tiredness and an aching back contribute for sure, but overall it’s a reflection of how Josh is feeling. Constantly distressed today, he’s desperate to sleep but just can’t manage it with all his itching and shaking. His teacher came this morning and tried to talk to him about Dr Who and planned for them to make a Cyberman mask. Not surprisingly, he didn’t really respond at all or appear to know what she was talking about. I showed him some football pictures afterwards and he became upset again as he doesn’t recognize either the players or the clubs. His teacher then tried to engage him in a sound game on her Apple mac, but the files were for the wrong version of iTunes and she ended up doing nothing other than speaking to the IT department on the phone for 30 minutes before leaving. There has been a high point though today and it’s Joshie. Despite everything thrown at him, he’s done so incredibly well. The timetable Claire set up yesterday was thrown into total disarray when the physios turned up 3 hours early with a tilt table. Josh wasn’t keen on trying it out and we had to completely re-arrange the entire room to fit it in, but eventually we slid him onto it, strapped him down and he managed to virtually stand up in it. Basically it’s a flat table that tilts slowly to stand at 90 degrees to the floor as the pictures will show you. It looks like an instrument of torture from the Middle Ages but Josh found it surprisingly comfy and was magnificent. Afterwards, when back in bed, they asked him if he was ok to do it again tomorrow to which he answered ‘ Maybe…’. When they said they’d come back, he said he ‘might not be here’ and then shrugged mischievously when they asked him where he’d actually be. He is such a star and, despite him wearing me down, I can’t think of anywhere else I should be right now. Oh, guess what ? There would appear be a problem with the televisions again. A man came to see me while Josh was vomiting, having diarrohea and screaming and got as far as ‘ Can I talk to you about the telev-‘ before I not so kindly explained that now was not a good time. He hasn’t returned but the grapevine says he’s decided they’re unsafe and can’t be used again. We hardly ever use it anyway, but if he comes back again today he just might find his head stuck through the 14inch screen.
Wednesday 15th September
It was like Blind Date waiting for the door into our room to open last night. Josh and I never have a clue which nurse is going to walk in and whilst they all have their strengths, some are infinitely better than others and can make a huge difference to your night. Being tired and irritable, we were both relieved to see it was one that knows her stuff, is proactive and likes to take charge. We gave Josh Malatonin first. It’s the hormone responsible for your body's patterns and rhythms so it resets your body clock. That was followed by his usual cocktail of drugs, half of which he threw up. At the moment Josh vomits almost as soon as anything goes into his stomach. My first thought was he’s got a virus of some sort, but the nurse told me she and Claire stopped his anti-sickness drug on Sunday so it could be that. Prior to her arrival I’d witnessed Josh hallucinating and feeling scared for the first time. He kept glancing nervously at the door and the ceiling and imagined someone cutting his head off. Scary stuff, but not quite as horrific as some of the real dangers he’s faced over the last two months. Thankfully he calmed down and we both had an excellent night with Josh only really stirring around 4am when he had another dose of Chloryl Hydrate which sent him straight back to sleep until 9am when he had to have another heart echo in his room. Not the most pleasant wake up call, but he remained calm despite all the gell, electrodes and prodding. There’s no change in the amount of fluid around his heart and it appears to be watery rather than inflammatory so it’s not an immediate concern, although nobody appears to have any idea how it got there at this point, which is a little worrying. Everything feels so much better after a good night’s sleep and Josh is far more relaxed today too. He’s on the tilt table again for the second day in a row and manages extremely well, even operating the buttons to go up and down himself. Claire arrives a few minutes after he’s finished and just in time for the ward round. His teacher arrives shortly after and Claire and I nip to Starbucks for a quick catch up and a hot chocolate with hazelnut. Yummy ! There’s a real spring in my step as I walk to Kings Cross. Despite the horrors of yesterday, Josh is really improving at the moment and there’s a real reason for optimism. Handing over to Claire is so much easier too when things are going well as I don’t worry quite so much. Gym and Joseph take up the rest of the day then it’s a mad scramble to find something to eat for dinner. I momentarily consider defrosting a couple of pork chops but decide against them for fear they were the ones worn by Lady Ga-Ga at the MTV awards. The Chicken Kievs feel like a safer bet. Claire has little to report other than they managed to lower Josh into his wheelchair and wheel him out to the nurse’s station but he wasn’t terribly comfortable in it and wanted to lie down again after 10 minutes. It’s going to be a long time before he’s chasing them up and down the corridor again. Big thanks go out to the friend who came round to see Claire last night and insisted on doing our ironing and Claire’s masseuse who gave us both complimentary massage vouchers. Hopefully I’ll be able to keep my bum under wraps when I cash that one in…
