Monday 9th May
Claire calls in the morning to say she’d like the large Teak table on the deck at the bottom of our garden moved to the top deck. It’s a two man job, so she suggests I ask the plumber, who’s meant to be coming today, to help. As it’s highly unlikely it’s part of his job description, I do it on my own – which is just as well as he never turns up. I send Claire a pic of it in it’s new home and she asks me to move it 4cm to the right. I think she’s joking, but it’s hard to be sure. She calls me her Superman and somehow manages to be both my Lois Lane and my Kryptonite at the same time. The table looks fine, but Joseph won’t be happy as it’s in the middle of his football pitch. After picking him up from school in the afternoon, we cycle to the doctors to check out his cheekbone which may have a small fracture from a fall a week ago and his feet, which are giving him jip and require a cream on prescription. It’s swimming next and part of his lesson’s in the big pool, which means I get to slide into the Jacuzzi and watch him from there. Definitely the best seat in the house. Josh stayed awake for a couple of hours after we left yesterday and has a lively morning today, although he faded fast after midday. Nobody’s informed UCLH that Josh has norovirus, but Claire has the foresight to make sure they know as it can affect whether he’s operated on or not. They’re okay with it as he’s the only patient on the list for surgery tomorrow, so it should go ahead as planned. Fingers crossed...
Tuesday 10th May
Cycling to school in the sun with Joseph is a terrific way to start the day. We always leave enough time to take the more scenic route through the country park and it never fails to make me feel good. I’m still not keen on taking any main roads though and tend to use the pavement even when he isn’t with me. Having always frowned on anyone over 6 that does this, my only excuse is that I’m 52 and pedestrians are lucky I’m not mowing them down on a disability scooter. Josh goes under GA just after 9am and when I call Claire she’s having breakfast with a nurse. This is commonly known as a perk. Our plumber arrives on time today but needs parts – not for him, for the pipe. He vows to return in the afternoon, so I pack my bags and head into town. Josh arrives back from UCLH just as I arrive at St Pancreatitis station, as I’ve now rechristened it. His pancreas looks fine but they detected tiny clumps and shadows in the wall that could mean micro gall-stones, so they may whip his gall bladder out at some future date. The minute I walk through the door he asks to watch the new Power Rangers which keeps him occupied while we have ward round. The doctor goes over the same ground he went through last week regarding Josh’s Thymus and lack of naive T-cells. He discusses alternative plans briefly but they’re not worth recording here until they’ve been discussed more fully and we’ve all agreed on the best way forward. Once Claire’s gone it’s a bit of a nightmare, as every time I sit down to work my plans are scuppered. First Josh wants to sleep so I arrange for cover, then he wakes and wants me around so I have to send them away, then he asks for pizza which means I have to leave the intercom on and run off to the flat to cook. He doesn’t want to eat and develops a headache when I come back but manages to play for a couple of hours before it all gets too much. He sleeps after oral morph only to wake up again around 8pm, just as I’m making headway on a brief. He declares himself not tired and watches TV while I try to knuckle down. His itching starts again a couple of hours later when he tries to settle down and it’s gone 11pm before I make a proper start. A long night would appear to be in store for at least one of us...
Wednesday 11th May
Up early to finish work and send it off. By 8.30am it’s raining anaesthetists with two visiting me in the space of 15 minutes. After that it’s a visit from staff at Tadworth to reassure me that they’re still around and talk about different ways they can help bridge the gap between GOSH and home. Josh doesn’t wake until 11am when we’re called to theatre. He’s relatively relaxed and jokes with the doctors. He holds my hand and tells me he wants to look at me while he goes to sleep, but that I need to stand on the other side as the nurse won’t be able to access his line. He’s bang on, as usual. I get a call about another job just as Josh is coming round. It’s right up my street and a week’s work, possibly two, but it’s unworkable at the moment and I don’t want to let anyone down – least of all Josh. He’s in fine form after anaesthetic but no nurse arrives to pick him up even though they’re only 2 minutes away and apparently left 20 minutes ago. In the end the nurse in theatre agrees to escort us up to the ward. Despite the pain from his LP, Josh wants to sit up in bed and do something, so we do. An hour later, he reluctantly agrees to see his teacher provided I stay with him, but is soon engrossed in a game which she put together with the patient in the room next door especially for him. It’s a football version of ‘Who wants to be a millionaire.’ I manage to slip out and when I return he’s won a million pounds – which will come in very handy given my current income has considerably less noughts on the end. He climbs out of bed for a wee just as I receive a text asking if I can make a business meeting down the road. As soon as he’s asleep I head off. When he wakes an hour later, he’s on good form and up for nearly 3 hours before settling back to sleep. His back is beginning to ache, which is hardly surprising given that he’s had a needle shoved through his spine, but he hasn’t complained of a headache today which is the first time in a long while. He does, however, have a tummy ache which is a little worrying as there’s a possibility his scope could have triggered another bout of pancreatitis...
Thursday 12th May
Yesterday was our 19th Wedding Anniversary by the way, not that either of us knew. To be fair, we’ve never been big on anniversaries and usually only realise when a card arrives from our ex-neighbours who always remember the date. That’s exactly what happened today, with Claire opening their card and sending me a text, followed by me emailing her a card I’d made last month and completely forgotten about. Josh is still complaining of tummy ache this morning, so I ask them to check his enzyme levels as I’m becoming more and more convinced it’s pancreatitis. Josh must sense it too as he keeps asking for his green button rather than just morphine. He’s up around 11am but struggles to stay up due to the pain. I let him get back into bed but try to keep him awake as his cousin’s coming to visit him. She arrives with Claire just before he nods off and is greeted with a huge grin. I need to skedaddle almost straight away and only just have time to update Claire who’s chatting with one of the physios in the corridor. Josh’s LP results have revealed the JC virus level in his cerebral fluid has increased, which may explain his recent neurological dip. There’s no sign of VZV returning but we’ve still to hear on HHV6. There’s another test being done on something that sounded like HSBC, but given that’s a bank I’m guessing I misheard. The internet’s down at home and I think it’s the Virgin router which would really bugger up my work deadlines if it proves to be the case. There’s no time to investigate as I have to pick Joseph up from school and take him to tennis before cooking dinner. It’s gone 8pm before I get the chance to check it out and it doesn’t look good. I work through until 4.30am in bed next to Joseph. Hopefully the internet will be working when I wake up in...oh, just a couple of hours actually...
Friday 13th May
It’s Friday the 13th and my luck’s out. My laptop appears to have slipped into a coma while I was asleep and nothing appears to revive it. Everything I did last night is trapped inside and due at the agency by 10am. After dropping Joseph at school, I have to do it all again on an old computer which takes 2 hours. Once that’s off, I go to PC World where Tom the technician manages to jump start it long enough for me to download a couple of things I need before it dies. He’s about to send it off when I raise an interesting dilemma. If it’s more cost effective for them to give me a replacement rather than repair it, what happens to my laptop ? Is it just chucked with all my files on it ? The answer’s yes, so I take it home in the vain hope it starts up again and I can back up any files that aren’t. I’m typing on it now but will take it in for repair next week – along with our new brand new DVD recorder which is also playing up. I visit the gym to try and stay awake, then pick Joseph up early and head for the opticians to see if we can get to the bottom of his headaches. His eyes are fine. After that his busy social life takes over as he makes a guest appearance at a drama club then ends the day at Beavers in the church hall. Josh does indeed have pancreatitis again and his enzymes have shot up. He’s back on pain relief, but Claire thinks it’s just a blip caused by the scope and he’s recovering quickly. He’s had another heart scan and an ultrasound of his belly as his weight’s up and he’s looking puffy again, but they didn’t find anything unusual. The Renal team have recommended giving his diarretic 3 times a day rather than twice, but the dose itself hasn’t increased. He’s back on Pentamadine, as even though it dampens the immune system, it’s preferable to the rare type of pneumonia he’d be susceptible to without it. His skin has tested positive for GVHD, which means we have to cream his body, arms and legs 4 times a day, even if he’s asleep. Having GVHD scuppers quite a few of our options going forward as several of the proposed treatments would make it far worse. He vomited today when Claire was out. A nurse had helped him onto his commode when he needed the toilet and then just left him there. He’d called out, knowing he was going to be sick, but even though the intercom was on nobody came. When Claire returned he was still sitting there with the floor covered in vomit. When the nurse did eventually walk in, she walked out again swiftly and left Claire to clean up the mess. She wasn’t impressed, I can tell you !
Saturday 14th May
Neither Claire nor Josh slept much last night. Whilst his enzyme levels have dropped quickly and his fentanyl background was stopped yesterday, his pain has returned big time and he’s back on it. Claire’s exhausted. We’re generally up 5-6 times during the night and can handle it, but when it’s every 15-20 minutes it’s tough. Josh’s vomiting has continued, his platelets have dropped along with his lymphocytes and he’s currently neutropenic again. Gastro have been up to check on him, but they appear to be completely out of touch with what’s happening. There’s a multi-disciplinary meeting scheduled for Thursday which will include us and Tadworth in addition to several representatives from all the departments Josh is currently under. It will be interesting but we already know that a couple of the plans have had to be scrapped because of his GVHD. The meeting buggers up all our carefully laid plans for the week too, with Joseph’s birthday fast approaching. We’re still trying to rework them, but it probably means me staying at GOSH until Wednesday then coming back home to take the DVD recorder back to Bluewater, the laptop to PC World and my hearing aid, which has also gone down the Swanny, to Bromley before returning to the hospital the next morning. It’s not ideal, but then nothing is. Hopefully John Lewis will have another loan DVD as Josh is unlikely to be up to anything other than watching TV this week, if that, and I can’t even record Man Utd winning the title for him at the moment !
