Monday 23rd November 2009
Letting Joseph sleep with me last night proves to be a mistake as he wakes at 5am to excitedly tell me his cousin’s teacher has the same surname as his teacher. Not surprisingly I’m less enamored by this startling revelation than he is. Once he’s been delivered to school, I nip back home to collect my bags for the week only to be greeted by another sudden deluge of rain. This is a real problem as our porch floods whenever there’s a downpour and the water seeps down into the cellar. According to Dyno Rod, who came last week, our soakaway has collapsed which is why the water drains away so slowly. Since they’ve been and flushed it, it’s become totally blocked with silt and doesn’t drain away at all. Manage to sweep the water away with a broom, literally pushing water uphill, before leaving. Reach the station soaked to the skin only to find trains falling like flies - presumably due to the adverse weather conditions and the wrong kind of rain. After a 20 minute wait one eventually arrives. Walk straight to GOSH to drop my bags off before heading off for another yet presentation. See Claire briefly and Josh wakes when he hears my voice. During the few minutes we have to catch up, Claire receives a call from Joseph’s school. Happily he’s fine and dandy but several children in his class have come down with hand, foot and mouth disease which we’re told is highly contagious. This is presumably far more serious than head, shoulders, knees and toes or even the hands, knees and bumps-a-daisy outbreaks that often result in the whole class singing and making strange gesticulations. We’re told to look out for small blisters on Joseph’s palms. It’s unlikely adults will be infected but whether this means we can pass it on is another matter so we will have to monitor the situation carefully in light of Josh’s condition. Arrive back from my presentation just as Josh’s teacher is putting away her Apple Mac and, after catching up on the weekend’s football with Josh which saw his team annihilate mine 3-0, it’s off to the playroom. Today it’s mask painting and puppet making and we return with our new creations a couple of hours later covered in glitter and paint. There are now so many of Josh’s works of art on display in our room that we can hardly move without knocking something over. Finger puppets, Hama bead knights, mosaic parrots, dangling snowmen, fish mobiles, paper plate faces, and don’t even get me started on the wooden dinosaurs. It looks like Tony Hart’s ‘Vision On’ gallery on acid - all that’s missing is the clunky music. As if that isn’t enough clutter the Playstation appears to have miraculously materialized in the corner of Josh’s room, like Dr Who’s Tardis, since I left on Friday. I try to look annoyed but fail miserably and we end up playing a mini World Cup competition before bathtime. After the usual post-bath routine, we settle back to watch ‘Little Shop of Horrors’ while I edit some copy. For those who haven’t seen the movie or the original stage musical, it’s the story of a strange and unusual plant from outer space that feeds on human blood and sings ‘ Feed Me’ in a deep soulful voice. Perhaps not the best thing to show a 10 year old who’s nil by mouth just before they go to sleep…
Tuesday 24th November 2009
Day 84 in Cell Block H and it’s beginning to take its toll. Not that we’re counting the days, but Claire’s been filling in her disability and carers allowance forms at home and that’s how long you’re allowed in hospital before payment stops. Frightening isn’t it. Josh is even less keen than usual to wake up this morning and is either fed up or has turned into a teenager overnight. Venture out to WH Smiths to take a book back when his teacher arrives. Never easy taking anything back to that shop even when you have a receipt, which I do. It’s a shame Josh can’t come. He proved invaluable last year when I bought him Man Utd slippers from a sports shop that were slightly too small. Claire had cut the plastic strip joining them together and when I wheeled him into the shop to ask if we could exchange them, we were told we couldn’t. Pointing out that we’d only cut it because he was disabled ( meaning his Talipes) and couldn’t try them on otherwise, brought about a change of heart. The poor man behind the counter looked deeply embarrassed and reversed his decision immediately. Unfortunately Josh chose this moment to try and clamber out of his wheelchair to examine a Man Utd colouring poster on the other side of the store that had caught his eye. What followed was like a scene from ‘Little Britain’ as Josh tried desperately to stand up and I kept shoving him back down, just in case the shopkeeper thought I’d lied about his disability. When we eventually found something Josh wanted in exchange and took it to the counter, the man refused to take our money even though it more expensive than the slippers. This was a definite result but I felt a little tarnished by the whole thing. Having said that, I’m happy to hire Josh out to anyone making returns after Christmas. He’s not cheap, but he’s worth every penny. Today’s exchange passed without incident by the way. When I get back to the hospital, Josh is just finishing a lesson on Internet Safety which is somewhat ironic given the number of viruses clogging up the hospital networks and the fact I struggle to pick up a signal on any other network since we moved onto Fox ward. The doctors’ round brings nothing new other than we’re switching from IV Cyclosporin to oral which is good news as it means less bleeps from the machines overnight. I resist breaking into a celebratory jig until they’ve left the room. Several other BMT patients are in the playroom when we enter. As Josh joins them to start making Christmas cards it looks for all the world like a meeting of the Yul Brynner appreciation society. Work goes bananas today with several problems cropping up and I miss a couple of important calls when Josh is in the gym getting to grips with a treadmill for the first time. He’s not too intimidated as he knows his Grandpa got one for his 90th birthday back in July and is still alive and kicking. A dressing change after a bath leaves him with a chapped nipple and I have to borrow a pair of scissors to free it before he’s ready for bed. Glance up at the clock before I lie on the bed to start work again. Can it really be past 10pm already ?
Wednesday 25th November 2009
LG. Life’s good here at the moment. The sun is shining. Josh is on top form and showing no sign of GVHD. Another of his IV infusions has been switched to oral in readiness to go home. Work is picking up nicely. And I’m living with my son in a small two bed apartment with an en-suite bathroom ideally located near shops and restaurants in central London. Oh yes, the glass is definitely half full today if not positively overflowing. Josh is even up at a reasonable hour and eager to go to the playroom straight away. This is mostly because his friend and fellow patient Charlotte is going home today and he wants to make the most of their last few hours together. We unplug Josh’s stand at the side of the bed, which currently has a record breaking 5 different pumps attached to it, and wheel it down the corridor. Charlotte’s not there yet but expected soon. After plugging Josh in and finding a jigsaw puzzle he hasn’t actually done yet, I sit down with my laptop to download some documents for work. I’m in full flow when my battery runs out and I have to return to the room for the lead. Keeping track of what’s charged and what’s not is a full time job in itself on the ward. It’s not just the laptop, the portable DVD player, my Blackberry and Josh’s Nintendo DS that all have to compete for the sockets next to his bed, it’s Josh’s medical equipment. It’s a miracle I haven’t unplugged anything vital yet. By the time I return, 2 hand washes and a couple of airlocks later, all the children have arrived and a music session is underway that brings tears to Josh’s eyes and mine. Not just because the songs the music therapist bashes out on her Yamaha organ are strangely out of tune, but because she leads a chorus of goodbyes to Charlotte. As all the children join in, I can see that Josh is upset. She’s the only patient on the ward he can talk to properly and he’s spent many happy moments with her over the last few weeks since he’s come out of complete isolation. They then sing goodbyes to all of the children, probably to be politically correct and not show favouritism, but given that nobody else is actually leaving this thoroughly confuses everyone and results in even more tears. We return to the room while Charlotte trots off to pack and I slip out just before Josh’s teacher arrives to meet a work friend who has also been through a particularly difficult time health wise over the last few months. She’s looking great and been coping as well as anyone possibly could and for the next hour we catch up on gossip and swap treatment stories over cod, chips and mushy peas. It’s over all too soon, but I head back to the hospital feeling almost human again. Walking through the ward, I pick up Josh’s notes to copy out his blood results and spot a letter to his gastro consultant dated 23rd November that mentions his cells are 100% donor, which is fantastic, but news to me and Josh. Claire hadn’t been told either. Guess it must’ve slipped their minds. For the record, Josh was very excited on hearing the news and believes he is now officially a completely different person – he just has no idea who. Tonight the plan was to leave Josh around 8.30m to join a group of ex-work colleagues who are having a reunion dinner in Soho. Josh asks if he can sleep in my bed while I’m out. Mum swapped beds with him last year on Rainforest one night and it led to the nurse who came in to administer his meds nearly having a heart attack. They had a good laugh about it later but I suspect fumbling around under the covers in the dark for a 10 year old’s pulse and finding his 50 year old father fast asleep in his jim jams instead could be interpreted as sexual harassment on my part, so I have to decline. As it turns out I don’t go out anyway. Having had no replies to a couple of messages, I can’t be sure it’s happening so I delay leaving. At 9pm I finally get a text from someone saying they hope I can make it, but as they’re only there for another half hour and I’m a 20 minute walk away I decide to pass. These dinners used to go on until at least the last train home. What a bunch of lightweights. And to think I was going to ask them all back to my luxury apartment for a coffee afterwards…
Thursday 26th November 2009
No bleeping machines whatsoever overnight, but still didn’t sleep. This is mostly because they decontaminated Charlotte’s room next door now she’s home and left the lights on by mistake. As my bed is directly under the dividing window and it shines through the thin curtain like a theatre spotlight I’m unsure whether to nod off or launch into a soliloquy. Josh has been here so long now that I’ve lost count of the number of times they’ve changed his ID wrist bands because they’ve faded and stopped serving their purpose. This morning the nurses cut off another old one and replace it with a brand spanking new state-of-the-art electronic one. This isn’t as exciting as it sounds. The only difference is this one prints his details on the label electronically rather than being written by hand. It doesn’t track him, zap him or even emit an ear-piercing alarm if he tries to leave the ward. Very disappointing. Josh climbs out of bed around 11am for his first clothes change of the day. His skin has continued to darken but pretty evenly and he’s now a nice shade of Whitney Houston brown, although in her case I don’t think it had anything to do with drugs - even though she’s rumoured to be on more than Josh. Today I’m out for lunch again, this time to meet a couple of college friends from my days at Preston Polytechnic. On the way out I spot a poster next to the lift for flu jabs.’ Don’t procrastinate, vaccinate.’ Yep, can really see that one touching a nerve and becoming part of everyday language. Have lunch at The Enterprise in Red Lion Street which is the same bar as yesterday. They’ll start reserving a table for me to beam down to if I keep this up. Great to spend time with old friends and talk about all the same nonsense we did 30 years ago. The afternoon is split 50-50 between entertaining Josh and playing phone tag trying to catch up with a new freelance brief. The highlight of the day is having a cracking conference call with a PR company about a forthcoming project whilst stripping Josh’s bed, dumping the sheets in dirty utilities and running his bath. Flexible working really does work ! News from home is that Joseph had a good day after being a bit of a pickle earlier in the week. Claire takes cookery lessons at his school on a Tuesday and he threw a right wobbly over an unclear incident involving a Dalek biscuit cutter, some pink icing and two other children. He calmed down after half an hour and there was no need to call either the police or David Tennant to sort the matter out. Must still have Joseph on my mind an hour or so later when I pick up a full wee bottle to dump in the affectionately known ‘sluice room’ and write Joseph’s name on the side in black marker pen instead of Joshua’s. Fortunately Josh spots this before I leave the room and I hastily cross it out in case some poor nurse thinks they’ve gained an extra patient.
Friday 27th November 2009
With Josh still asleep and work relatively up to date, I sit down in the morning to read through my Green Talk document again to see if there are any other restrictions that have been lifted since he came out of solitary confinement – I mean isolation. It appears that all this time I could have worn earrings, small necklaces, make up and perfume in the room without getting into trouble. I’m assuming this comment is aimed purely at mothers and Katie Price’s cage fighting boyfriend. I can definitely stop wearing my pinny now though which comes as some relief as I’m still getting through about 12 a day. Must remember to tell Claire when she arrives, although this will mean she’ll run out of the bath completely naked next time Josh calls out for her. Something else I hadn’t spotted before is that you can send an anonymous thank you note to the donor through the bone marrow registry. Must look into doing this as it’s not a simple process that they put themselves through. For 4 or 5 days Josh’s donor will have had medication to increase the number of stem cells released into his bloodstream. Blood is then removed through a large vein in the arm and flows into a machine that removes the stem cells. The blood is then returned to the donor and the collected cells stored. This takes around 4-5 hours. The area where the bone marrow’s taken from can feel stiff or sore for a few days, and they’ll feel tired. Within a few weeks, their body replaces the marrow but it can take up to 3 to 4 weeks before they fully recover their strength. Phew ! Saying thank you feels like the least we can do. It’s also possible to meet the donor at some point if you both desire. This sounds like a terrible idea and they do advise you to consider carefully before going ahead - especially if he’s from Wales. Josh wakes at 9am which is as rare as an Everton clean sheet these days. He’s desperate to go on the Match Attax website and put together an online album of his cards. We struggle to get a signal in the playroom, but eventually we are up and running and he’s still absorbed when Claire arrives. Work really is hotting up at the moment. With two conference calls and a briefing today, there’s only time for a quick hello hug that doubles as a goodbye one then it’s off to Farringdon. Joseph has been on a school trip to the Horniman Museum and talks non-stop all the way home and all the way to Taekwondo. Pluck up courage to ask his teacher, or sensei if my misspent youth watching Kung Fu movies serves me right, for another green stripe as he pulled a thread on his last one and completely unraveled it before we had a chance to sew it to his uniform. Did Bruce Lee ever have this problem ? After the session Joseph spots our neighbour’s children, who go to the same class, with their new au pair and offers them a lift home as it’s so cold. This is fine in principle, but with only two child seats in the car, it takes a bit of reshuffling. All is sorted when I suddenly realise that the au pair has no idea who I am and her English is so limited, she has no idea why I’m kidnapping the children. I manage to explain but we then hit another snag. Neither of us knows how to fold away her pushchair to fit it into the boot. After 5 unsuccessful attempts, I explain in my best Polish that she will have to walk back on her own and I’ll take the children or they’ll have to get out, which they do not look keen on doing. In the end she walks and pick them up about 10 minutes later. 3 lots of washing done and Joseph in bed, I grab a bottle of wine out of the fridge. It’s less than half full, so to save on the washing up I don’t even bother pouring it into a glass.
Saturday 28th November 2009
Claire called last night to say that there are five new BMT patients coming on to Fox ward next week. I knew of one, a 4 year old boy called Hassan that Josh was introduced to on Thursday. He was really looking forward to having a new playmate but it now appears that won’t happen. With five new inmates on the ward, Josh will have to be moved. The suggestion is Rainforest ward, where we were last year for 7 months and where we dreaded returning to. We completely understand why he needs to leave in order to allow treatment to start for other children, but Claire has spotted a fatal flaw in their plans. Rainforest ward has no en-suite bathrooms. Forget the fact the nurses aren’t trained in BMT protocol or that they had an outbreak of E-coli on the ward when we were there which meant we were all quarantined for several days, Josh would have to leave his room and walk onto the main ward to share a bathroom with other patients, their friends and family, Uncle Tom Cobley and all. It is totally unacceptable and puts him at enormous risk. It also makes a mockery of everything we’ve been through and the doctors, nurses and cleaners have done for him. The bathroom on Rainforest was a disgrace when we were on the ward. I used to have to clean it before Josh went in and he wasn’t even vulnerable then. Used bedpans were dumped in the room and left for hours at a time. The toilet didn’t flush and was constantly blocked. The floor was covered in dust and stray hairs. Various bits of unwanted medical equipment were piled against the walls. Josh even had a height chart fall on him one afternoon after a bath. We’re not moving onto that ward whatever anyone says. This could be the first ever hospital sit-in. We can paint placards in art and craft sessions. I think I mentioned before that being on Rainforest would result in Josh being confined to his room again. That pales into insignificance next to this. We’d be better off bringing him home or back to our local hospital. Rant over for now, but next week the battle will begin. The rest of the day goes smoothly. In the afternoon Joseph and I go to Petts Wood for the turning on of the Christmas lights. Regent Street gets Anna Friel, we get the mayor and mayoress of Bromley. There’s a cracking firework display though and Joseph gets to see Santa and take a spin on several top rides before we head home and he asks to go to bed straight after dinner. Probably still over excited about seeing the mayor, I suspect…
Sunday 29th November 2009
And a Merry Christmas to one and all ! As if working on a Christmas campaign for a charity wasn’t enough to fill me with Festive spirit, I spent the entire morning putting our tree up in the living room. Yes, it’s ludicrously early, but looking at our schedule for the next few weeks it’s probably the only chance I’ll get. Joseph is looking expectantly round the house for presents even as I type. Still reeling from yesterday’s news and the possibility of Josh’s health being compromised. The latest from Claire suggests the last patient won’t arrive until December 18th and Josh is down to be discharged on the 20th - although that’s a Sunday so it won’t happen. We’d be better off coming home early than taking our chances on an unprotected ward. At least we can limit the people and germs he comes into contact with here. Having said all that, the talk is that Josh’s proposed move is this week and we need to know why if there are empty rooms on the ward for another 3 weeks. That aside, Claire and I are still trying to plan the next few changeovers. I’m back there Tuesday until Saturday or Sunday and have a film shoot in London on Monday evening. Joseph is doing his nativity play Tuesday and Wednesday morning. Somehow we need to work around all this, several new briefs and a school fete. And to think I used to find slotting in dental appointments complicated when I worked in Paddington. Joseph’s social life continues to blossom with a birthday party at an old flame’s house this afternoon. As far as I’m aware there was no kissing going on, but he was pretty tired when he got home so who knows what he got up to. After a quick bath he’s fast asleep before 7.30pm. No Christmas stocking hung on the end of his bed yet, I hasten to add. Hospital Dad Poll: Please click an option at the top left of the blog to let Josh know who's reading about us. It'll only take you about 2 seconds. Thank you !
