Monday 5th October
Up early and into London to take a brief for a ‘global viral campaign’. Can’t seem to get away from viruses of one sort or another. Back to business on two fronts this week with this job and a couple of pitch credentials needed before the end of the week. More importantly, Josh is back at GOSH to begin the countdown to his unfinished business…
Manage to catch a train straight back to Kent and step off armed with several family DVDs given to me by the CEO of the agency I’d just been briefed by.Thanks Adam. Returning home before Claire and Josh leave not only means I can give Claire my non-transferable Travelcard and save £7.50 ( Every little helps…) but I can take them to the station and say goodbye properly. Just as well as pouring with rain and the suitcase weighs about the same as a small elephant. Help them on train and run alongside the train waving madly. Just manage to put my brakes on before I run out
of platform.
Work at home until it’s time to pick up Joseph who fills me in on the latest gossip about his 3 girlfriends whose names I’ve withheld to protect their identities. One of them keeps kissing him on the lips unless he runs away. From what I can gather he doesn’t run away very often. At home Claire tells me of nightmare journey from Blackfriars station to the taxi-rank. The fact I warned her about the rebuilding work does nothing to ease my guilt when she tells me the suitcase dropped on her toe and she’s worried it’s fractured.
Joseph sleeps in our bed as he has a temperature. Nurofen does its job and he’s less hot and sweaty when I climb in next to him to write this blog at some ungodly hour after finishing work for the day.
Tuesday 6th October
Spend majority of day working and almost forget Josh is having a Hickman line put in. For those less au fait with such medical terms, a Hickman line is basically a direct line through his jugular into his bloodstream, the other end of which pokes out through his chest. Anything from his TPN feed to his chemotheraphy drugs are injected through here. As you’d expect it means he has to go under general anesthetic but that’s so commonplace for us all now it holds little fear. He’s had a Hickman before and it replaces the picc line in his arm which will come out tomorrow. His gastrostomy peg, which goes directly through to his stomach and down which his medicines and elemental feed go, will remain in until long after he’s been discharged. All crystal clear now ? No, me neither. Claire sends me a photo from her iPhone ( there’s an App for that…) once Josh comes round. He looks as happy as can be expected given the circumstances.
Joseph debriefs me on the girlfriend situation again as he saunters out of school but I’m struggling to keep up with the intricacies of his many relationships. Hopefully there will be a full summary in the soap update in TV Quick this week. Just time to have a game of Scooby Doo together ( he’s Scooby, I’m everybody else) before dropping him next door to play and have dinner. We phone the ward when he’s back. Every night the conversation goes the same way. Joseph asks Josh how he’s doing. The reply is always ‘fine’. He then asks if he’s had a nice day at hospital ? Josh always replies ‘yes’ – regardless of whether he’s been sick, on oxygen, had major surgery or been transferred to intensive care. This probing interview technique will surely lead to a job as a presenter on GMTV in the near future now that Fiona Philips has gone.
Work until late again then stretch out in a long hot bath knowing that my next bath will be at GOSH in a tub the size of a small sink…
Wednesday 7th October
Work goes well with good ideas rolling in from some long lost dark recesses of my mind. Good therapy after the chaos of a school run which saw several near collisions between irate mothers battling over parking spaces down one of the more popular side roads near Joseph’s school.
Day marred by setbacks at hospital. Josh is back on oxygen although nobody’s quite sure why. Not an infection as nothing grew from the cultures they took last time, so thought to be part of his underlying disease. The doctors have only ever seen this in adults and only very rarely at that. Nobody in the world has ever been on his cocktail of drugs or gone into a BMT on one of the drugs. This is far from reassuring news.
Take Joseph swimming. He’s taken to it like a duck to er…water. Josh never learnt to swim properly. Three sets of grommets for his glue ear, various picc lines and Hickman lines have all meant long periods of not being allowed near the water. Can’t help thinking of Alex’s grommets and the lengths we went to in Portugal to keep them dry - coating cotton wool in Vaseline, wedging it into his lugholes then adding an elasticated headband to keep them in place. He used to hate all the fuss and would invariably lose his temper. Seems like such a waste of time in light of what was to happen just a few days later…
Manage to cram all my stuff, plus Josh’s weekly entertainment demands, into 2 large hold alls and a suitcase. Will be weird only wearing everything once as I can normally make a t-shirt last a good couple of weeks.
Thursday 8th October
Drop Joseph off early at a friend’s house. She has a son in the same class and will take them both to school. Just make train and settle into seat only to receive a text from Claire warning of a pillow shortage at GOSH and telling me to pack my own.
Train stops short of Farringdon so have to quickstep past commuters dragging my case behind me to make my meeting. Lift not working and haul luggage up 8 flights of stairs. Following two credentials presentations and armed with a leftover chocolate muffin, I head back to Farringdon station to hand Claire my return ticket. She is still at GOSH having forgotten our carefully laid plans but somehow manages to make the
next train.
I’ve always loved walking in London but it’s hard seeing people sitting in cafes and restaurants enjoying themselves when it’s so far removed from our lives. The sun is shining but there’s an Autumnal chill in the air and I’m reminded of our time in hospital last year. Whenever he was well enough, I’d take Josh down to one of the parks in his wheelchair and we’d knock a football around for a while. The first time we did it, the first shoots of Spring were slowly emerging. By the time we kicked our last ball it was late Autumn and the trees were nearly bare. It’s so easy to lose track of time living in hospital. Almost a whole year can just slip away without you even noticing. Find myself playing Vivaldi’s Four Seasons in my head and wondering why he named such an evocative piece of music after a pizza,..
Josh is now on Fox ward. Previously it was Robin. Last year it was Rainforest. All the wards are themed and I have several animals adorning the curtains around my bed. Haven’t spotted the fox yet, but I’m sure he’s there. There’s probably a Gerbil and a Ferret ward somewhere in the hospital but I haven’t found them either. Everything is running late in the afternoon. Josh’s physio is delayed because he’s still on his TPN, his picc line hasn’t been taken out because everybody thought someone else was doing it, and his bed hasn’t been made.
When he finally goes down to the gym, I nip out to grab some crisps and discover this season’s Match Attax football cards on sale a week early in an Asian newsagents round the corner. I resist telling him they’re on display too soon and buy 10 packs instead. Josh’s excitement when I let him open a couple almost brings tears of joy to my eyes. After he’s finished staring at them for a good half hour he thrashes me at Monopoly Deal. Try to sleep but combination of being a pack horse and having no pillow is too much for my neck and back and it’s past 5.30am before I finally drift off.
Friday 9th October
Josh’s first waking thought is to play our football board game. Manage to delay starting for half an hour as it’s only 8.30am and my back and neck have seized up so much I can hardly move. The day is thankfully uneventful on the whole.
Claire comes up for an 11am consent meeting we both need to attend whilst Josh is in physio again. The manner in which we’re talked through the procedure one final time is judged just right even though the content is still upsetting. We are warned of the catalogue of side effects and risks that Josh will face even if things go well. Nothing new, but the fact that the two most life shocking aspects of the transplant that will affect Josh for the rest of his life are now the least of our worries will give you some idea of how serious the situation is. I sign consent forms for a series of blood tests and data sharing that basically means that his case can be studied and hopefully help others. I’ll be briefed on the protocol of complete isolation on Monday. Treatment starts Tuesday. Claire will swap with me on Thursday and get her own briefing. It’s a damning indictment of our society that the forms consenting to a procedure as important and complex as this are far more straightforward than the ones we have to sign to allow photographs of Josh to be taken in the GOSH schoolroom…
Josh is amazing when his picc line is pulled out. The wire seems to go on forever as it is pulled from his arm - like a stream of magician’s handkerchiefs being produced from a top hat. He doesn’t even grimace and smiles throughout. A true star ! I ask the nurse if she can track down a play therapist for me as we have seen neither hide nor nut brown hare of one since we arrived on the ward this time. One duly appears to explain that they are understaffed and she has been in meetings. In a hospital that proudly proclaims that children always come first, it’s sad to see them having to play second fiddle to administration and pen-pushing just like anyone else. She stays for an hour and Josh has a terrific time. We agree to a schedule of three days a week for an hour for future visits, then it’s off to the playroom to take advantage of Josh’s freedom from TPN for a few hours.
Several games of pool and a couple of tricky jigsaws later it’s back to the room for a bath. Josh is out like a light pretty quickly after I’ve read a couple of chapters of Harry Potter to him, but I find it hard to sleep again. Run out of orange squash and consider a trip to the kitchen but this would involve climbing out of bed, stepping into the ante-chamber to wash my hands and waiting for the red light to stop flashing. Then I’d have to walk down the corridor to wash my hands again, squeeze alcohol gel on them, walk through the next set of double doors, squeeze another blob of gel on my hands before entering the kitchen. Given that I’d then have to repeat the entire procedure all over again to get back to the room, I decide it’s not worth the effort and convince myself I’m not thirsty at all. Paul Mckenna would be proud of me…
Saturday 10th October
Sleep in hospital is never completely satisfying because the beds aren’t comfortable, you have to contend with top sheets and blankets rather than duvets (anyone remember top sheets ?) and for most of the night there’s a high-pitched alarm bleeping away – usually ours. Somehow we both manage to sleep through last night’s cacophony. Josh had high blood pressure and a low pulse all night which meant being attached to a monitor that went off every time either went above or below a certain number. This meant having a pretty student nurse popping in every few minutes to feel his pulse, stroke his forehead, lift his shirt to check his chest and fumble around in the dark for his tube. I should be so lucky…
Josh doesn’t stir until mid-day which means a chance to send off invoices and check e-mails in relative peace. By 2pm he’s off his feed, live and unleashed and heading for the playroom. Given that he won’t be allowed to leave his room after Monday, we make the most of the facilities and cram chess, pool, air hockey, Quidditch World Cup on X-Box and a couple of somewhat bizarre 3D jigsaws that messed with our eyes to such a degree that we never finished either.
After a bath and some sterling work on key stage 2 decimals, Josh settles back to watch the end of the rugby and I sneak out for my first meal of the day at 7.15pm. Even on a Saturday the city is quiet and many of the restaurants have closed. Make do with a McDonalds meal that doesn’t arrive for 20 minutes and end up shoveling it down before rushing back to the ward for X Factor. Josh tells me he’s not in love with Kandy Rain but thinks they’re all ‘really sexy’ – especially the blonde one.
God help any poor student nurse sent in to lift his pajama top tonight…
Sunday 11th October
Another disturbed night. Managed to watch 3 episodes of ‘Lost’ in between climbing out of bed to silence one of Josh’s alarms every few minutes. Fortunately it was the one that sounds like a ‘fasten safety belt’ chime on a plane rather than the one that wails like a New York police siren, so I eventually drift off even though it doesn’t stop until 6am.
The day is slow and non-eventful which is fine. Hospitals are like the deck of the Marie Celeste at weekends with hardly anyone milling around in the main building and only a skeleton staff on the ward. Josh in good spirits and we head to the playroom again in the afternoon. There are children on the ward who have finished their chemo treatment and both have several large sores visible between the few remaining wisps of hair on their heads. One still has her eyelashes and both have their eyebrows. Josh doesn’t comment but I catch him sneaking a few looks their way and know he’s thinking about what lies ahead and wondering just how everything will affect him over the coming weeks. Wave a snowboard video game in his general direction and any worries are soon forgotten as he freestyles down a black run at great speed and performs a perfect 160 degree turn.
After a bath, Josh is strapped up to a heart monitor for a few hours but seems stable. It’s 7.15pm and there are three full wee bottles in his room from this morning, four redundant plasters on his collar bone from Tuesday’s operation that should have been removed 2 days ago and his bed hasn’t been changed, even though it’s an important part of protocol on the BMT ward. I’m told there are no clean blankets because it’s a Sunday but they’re piled high on the next ward just a short walk and several hand washes away. Am starting to get the feeling that the next few weeks are going to be far from smooth…
