Monday 19th October
On the 10.01am train with the infamous powder blue suitcase sat by my side like an overgrown show poodle fresh from the parlour. It’s even more camp than I’d thought as it has a dark blue chiffon ribbon tied around the handle. This was my idea when we first bought it so I could recognise it quickly when it came off the baggage conveyor belt at the airport. You will not be surprised to hear that I’ve never
come across another powder blue suitcase anywhere else in the world…
Arrive at the hospital at…actually, not sure as we can’t wear watches here as you have to be able to wash your hands above the wrist. Feels like so long since I’ve seen Claire. A quick hug, an update on bloods and she’s off to pick Joseph up. Texting away like a teenager, I manage to meet up with an old work friend at an Italian restaurant across the road as soon as Josh’s teacher arrives. Good to talk about normal things and fatten myself up. Whoever says there’s no such thing as a free lunch is proved wrong as he insists on paying. Once I’m back we watch the weekend’s football including THAT goal by the Liverpool beach ball. Suggest that Everton sign it up in the January transfer window. A glance up at the clock tells me it’s 6pm by the time we’ve had baths, creamed up, gargled with antiseptic and changed our beds and clothes. Have already been through 16 aprons so far today. This figure is artificially high as I miscalculated the pillowcases twice, forgetting I’d finally brought a pillow up from home, and then neglected to fill my flask with orange squash at the same time.
Just as Josh is about to have his Hickman dressing changed, he has an attack. The nurse has to leave and wait in the ante-chamber. Since spending the first week in here hardly going to the toilet at all, Josh’s diarrhea is now coming thick and fast. And I do mean thick and fast. Four aprons and 6 pairs of rubber gloves later and I’ve cleaned up and deposited everything in the dirty utilities room. I return armed with 9 wee bottles and 6 bedpans to ensure no more apron changes until the morning and we’re ready to watch a movie once his dressing’s been changed. Removing the old dressing is something Josh generally does by himself. Even though it’s against protocol, he’s so adept at it that the nurses turn a blind eye. The nipple is usually the biggest problem as you can imagine and he peels the plaster back painstakingly slowly like a philatelist removing a priceless Penny Black from an ancient stamp album.
Finally we retire for the evening to watch The Spiderwick Chronicles knowing no matter how fantastical it is, it can’t be any weirder than our lives at the moment.
Tuesday 2Oth October
D minus 1 and counting. Floodgates still open as far as Josh’s bowels are concerned and spend most of the morning cleaning up. Rush out to meet a friend once he’s asleep again. Bizarrely my social life has improved no end since going into isolation. Surely that can’t be right ? Realize I’ve left my wallet behind before leaving the ward but don’t return as it would involve another 10 minutes of hand washing. A quick catch up and a Club Sandwich later and I’m back before Josh wakes up. The afternoon is relatively uneventful other than a visit from the resident Chaplain. We’ve met briefly before and she’s very jolly but neither Josh nor I feel the urge to chat or confess any sins. It doesn’t help that I only ever associate clergy in hospital with reading the Last Rites. Guess I watch too many movies.
Work has moved up a couple of gears so I do a little research on the laptop while Josh does a wordsearch. Usual routine of bath and a movie follows after which Josh wants to watch The Simpsons and comes on with the puppy dog eyes. Manage to resist but he pulls the same faces for the nurses whose hearts melt. They tell me I should give in but I stand firm. It’s 9.50pm and he’s asleep 5 minutes later. Maybe sometimes Dads know best….
Wednesday 21st October
Day Zero arrives and I’m shattered already as I hardly slept. Have been warned it will be an anti-climax which is why we decide only one of us needs to be here. Transplant is a deceptive word as the procedure is more like a blood transfusion. The other big news on the ward is that there was an explosion and a fire in the cafeteria kitchen last night and we’ll be lucky if there’s any hot water or heating today. We were here last year when there was a gas explosion that was ‘heard for miles and resulted in 700 screaming children being evacuated from the hospital’. Josh and I were on the floor above and slept through it. If I hadn’t turned on the TV and spotted our window Live on CNN, I don’t think anyone on the entire ward would have known about it. We all read the Evening Standard’s front page news with some cynicism later that afternoon. Methinks perhaps the media likes to make a crisis out of a drama.
A couple of important meetings mean I have to skedaddle the moment Josh’s teacher arrives. Meet prospective client at a Novotel and Gary kindly offers me lunch while we talk. This is my third free lunch in as many days. After hardly eating for 6 weeks I’m beginning to feel like a bit of a lush. All goes well and I’m back on the ward and scrubbed up just in time for the delivery of Josh’ s brand new stem cells that arrive fresh from his donor by motorbike from Leeds - probably along with half a dozen sloppy guiseppes, a side salad and some dough balls. There is a 90 minute delay taking Josh off a previous infusion due to a breakdown in communication between nurses and we only just have time for a quick bath. Luckily the hot water is back on.
As we suspected the transplant itself is a complete non-event. It’s basically just Josh linked up to a bag of blood.A medical representative has to be present throughout the two hour transfusion but only to ensure that not a precious drop is lost or spilt. This results in my first ever threesome with a nurse as we all play Monopoly Deal together while the stem cells move into their new lovely new home, make themselves comfortable and start unpacking ( This description of my sister’s was so apt I stole it). Josh jokes, charms, giggles and flirts away for the next 120 minutes and still manages to win. Halfway through the game Claire calls. We try to keep the laughter down but this proves impossible when Joseph talks us through his babe watch update on loudspeak. All the girls have started confiding in their mums that they have a bit of a thing for Joseph and talk longingly about his lovely blonde hair and fair skin. His kissable forehead would appear to take some beating too.
Hopeful that a side effect of the BMT might be tiredness, I am disappointed to discover the opposite is true and it is past 11pm before Josh finally settles down and I turn out the lights and retire to my corner like a weary but undefeated heavyweight boxer to try and decipher what’s going on in’ The Wire’ without the aid of subtitles.
Thursday 22nd October
Very little sleep again as every infusion and flush Josh has ends up bleeping away for 30 minutes when it’s finished because they are so understaffed on the ward. It’s frightening how many drugs are pumped into his body every 24 hours. He also had a waft of oxygen overnight as his levels dipped. At 8am they have to take him off TPN for the rest of the day because they forgot to put on a double tube that allows them to take bloods at the same time. Can’t remember if I ever explained this, but TPN stands for Total Parental Nutrition and is basically liquid food that is completely broken down and goes straight into his blood stream. Being taken off it this early means he will only get half the nutrition he should which is not great news as he doesn’t weigh much more than Joseph now, who is 6 years younger.
My short season of free lunches comes to an abrupt end today as I dine alone and nearly walk out without paying. Did the same thing in Jamaica after a 2 week all-inclusive holiday. Funny what you get used to. Am so in the habit of washing my hands at GOSH in sinks with motion sensitive taps that I just stick my hands under every tap now and wait for them to turn themselves on. The restaurant ones don’t but it takes me a good 30 seconds or so to work this out. Arrive back just in time to hear from Josh’s teacher what a model pupil he is. This is no doubt due to the fact there are no girls around to distract him - unlike his brother. After 5 years of collecting Match Attax cards every season I finally manage to persuade Josh to play the game itself. He’s a master tactician and slaughters me every time. By the time he’s out of the bath he’s fading fast and is asleep by 8pm. Check my Blackberry to discover Everton lost 5-0. My humiliation is complete when I undress for bed and discover the charcoal grey Primark tracksuit bottoms I’ve been parading around in all day still have the 6 inch long ‘medium’ size strip sticker stuck firmly to the right bum cheek. Will be hard to face the nurses in the morning and am unlikely to return to The Zen Garden restaurant for quite some time…
Friday 23rd October
Overnight blood transfusion for Josh but nothing to worry about and he sleeps through it. Intense bottom pain has started to return which is more cause for concern. When he wakes his mouth ulcers are bothering him and I’m unable to convince him to brush his teeth. Claire arrives for changeover just as the physio walks through the door and for a brief moment it looks like we might even manage a lunch date but Josh feels too sick to exercise. Claire informs me Josh’s stem cells came down from Wales rather than Leeds. Not sure it makes any difference either way as long as he doesn’t start belting out ‘Men of Harlech’ in the bath. Make my train with seconds to spare as the dirty laundry bags are even heavier this week now isolation is in full swing and slow me down. Joseph bounds out of school and into my arms. He’s had a short back and sides since I last saw him and looks more handsome than ever – his words not mine. His teacher informs me that he had a little accident in his pants at school and has another one after Taekwondo. Go to bed praying this is just a phase or a bug he’s picked up and not a sign of any bowel problems. Josh started the same way…
Saturday 24th October
No gym as it’s half term so we both get a lie in. Joseph checks himself in the mirror and runs back to bed excitedly to tell me that he still has his haircut. Into Bromley to pick up 4 days of free Match Attax cards for Josh. In the afternoon we go to Beaver world, despite the rain. Have been many times and it’s a strange place. Derelict shacks and trashed tow trucks litter the grounds. It’s like being in the Everglades but without the alligators ( actually they do have one called Big Boy who was in ‘ Live and Let Die’ but he died recently and is now stuffed and on display in the shack you can book for children’s birthdays). They also have a huge collection of unstuffed reptiles, birds and insects they’ve nursed back to health and Joseph is fascinated by a huge komodo dragon and a tarantula. There are beavers around too although you rarely see them. On this occasion one of the staff kindly kicks them out of their home and we watch them swim and munch carrots for a while before returning to say goodbye to the tarantula. Claire tells me Josh is still tired but doing fine. No sign of his hair falling out yet, although I noticed it had lost its sheen on Friday so it won’t be long. Let’s hope it’s more Alan Shearer than Matt Lucas. Joseph shattered and falls asleep immediately after his story. I take advantage of the clocks going back to iron for an extra hour. What a saddo…
Sunday 25th October
Manage to make church in the morning. Father Bryan is away so we get the understudy. Shame they didn’t warn us like they do before a West End show. Tidy up the garden and put up Halloween decorations in the afternoon. Claire’s found it difficult sleeping at hospital because of the noise. In theory the nurses should know exactly when an infusion finishes and a select few always enter the room seconds before the alarm goes off. The majority, however, don’t plan and it can be anything up to an hour of ear-splitting wailing before they finally shut it up. Not great at 2am. Josh’s skin pigment is starting to darken overall and is particularly dark around his sweaty bits ( yes, including that one). It’s like Michael Jackson in reverse, although in Josh’s case it will go back to normal. Hopefully his nose won’t fall off either.
