Friday 4 February 2011
Tea.. Best Drink Of The Day.. except for a 2-pump Caramel Latte from Starbucks
This morning, Joel is due to see the opthamologist, Dr. Barry. His name is John Barry. This struck me as rather poignant as I'd read earlier that day that the composer John Barry (James Bond & Midnight Cowboy themes among others) had died recently. This John Barry however is quite young. He looks too young to be qualified actually, but he knows his stuff and is very good with Joel.
His appointment is at 8.45 - and as I'm dropping Eve off at that time, it means I won't be able to be with him.. so I decide to join friends at Starbucks in Walsall for our (what once was) usual Friday coffee morning. I haven't had a good chat with them for a few weeks, and they all want to know how Joel is doing.
As I'm about to leave, one of the parents comes up to me and goes to hug me.. I'm a bit taken aback, considering his build - and I was expecting no more than a handshake. Still, perhaps he's not afraid to show his feminine side and wants to give me a good caring hug and pat on the back.
As he approaches closer, he grabs my hand and pulls me toward him.. "Hello, Steady tiger..." I thought. He shoves an envelope in my hand and says "We really don't know how else to help, but know that you'll be needing this...".
I can tell what's in the envelope, and I offer it back.. "No, please, you shouldn't...." They tell me it'll help with immediate needs.. they're right.. I've only had one paid job since the first week of January, and being self employed, I have no sick pay or holiday entitlement.. I don't work, I don't get paid, and being a freelance photographer - I only get paid when pictures get published so even if I do work, I'm not guaranteed income. Louise has said she's unlikely to go back to work for 12 months and is looking for her insurance to pay for someone to cover her work.... My main worry is not so much lack of my income in the short term, but that I may lose my regular clients who still need a supply of photos in the long term.. I need to get back to work but I'm having to be picky about what I choose to do.. not a comfortable position to be in... Hopefully Joel will be discharged again tonight if the wound has healed properly.. fingers crossed. I've got a commission to shoot a band on Sunday for News of the World, and I'm shooting Skunk Anansie tonight for the Express and Star... I need to get out and work - if only for my sanity. I'm not really sure if I'll be able to concentrate, but it'll take my mind off things if nothing else.
I get to the hospital for about 10.45... I'm hoping that the carpark will be a little emptier - but when I arrive I find that it's just as full as before.. Level 5 it is then.. My knees are killing me, so I park the car on the roof top again and hobble down the stairs like John Wayne. I'm consciously thinking about Joel as I'm groaning as I'm going down the concrete stairwell.. My knees feel like someone is jamming a hot knife under the knee caps.. it's very painful.. then I think of Joel having stitches with no anaesthetic and not even wincing.. I'm a wuss with a low pain threshold.. very low.
When I arrive at Joel's bed, he's playing Angry Birds again.. I'd bought him a new case for his iPod during the "M&S" trip on Tuesday.. £25 for a piece of plastic that probably cost less than 7p to manufacture. I'd promised him one when I bought his iPod, but I couldn't find one in time for when the iPod arrived, so I bought him a red case just for protection, and intended to buy an Angry Birds case as soon as... Hope he doesn't go off it any time soon. I wonder what it's recycle value is worth?
Joel is all smiles - he's seen the opthamologist who is very pleased with the progress of his recovery. The haemorrhaging in his eyes is healing well and his field of vision is getting much better - the blind spots are getting smaller. His 'squint' is not so obvious (though he still has the odd off day), so it seems the pressure is reducing nicely.
Colin brings Joel a sheet to order tomorrows meals.. I take a look at it and burst out laughing. There seems to be a difficulty in aligning the original sheet on the glass, and the results are often hilarious.. today though, hilarious, and slightly disturbing. I don't think I'd have much of an appetite after reading this menu....
At least it comes with vegetables instead of grapes.
After lunch, Hollie comes to take Joel for some physio at the Gym and sets up some skittles for him in a ten-pin fashion. There's only 6 'skittles' (wooden toys shaped roughly like animals), and he's lined up on a crash mat ready to get a strike... he misses.
He tries again.. and misses. He's about 4 feet away, and misses again. I notice his eye is turning in again, and he's having trouble kneeling up straight.. it's fair enough I suppose, he's on a crash mat - hardly the most stable surface to kneel on.
He's really struggling to get the balls to go straight.. they're going all over the gym.... but he persists. My knees are killing me from having to run after the stray balls.. I suppose personally I've always been very competitive, but where my kids are concerned, I've always emphasised it's the taking part that counts... (But winning is a bonus!).. with my knees falling apart though, I'm willing him with all my strength to knock them all down with the next ball so we can move on to another exercise with less damage to my patella (4 weeks at the hospital and I'm getting used to the medical terminology now).
Success! Next ball, several of the skittles suffer a knock down... Joel is rocking now - his balance is great, his aim is getting better with every shot - both right hand AND left hand.
Next he gets to go on the scooters - his favourite part of his physio... He has a race with Louise and wins.. now we're rocking...
Physio has gone really well, and Joel said he'd like to go to the playground.. It's cold outside, and I'm not looking forward to it, but I grin and bear it.. wrap up warm, and we head down to the playground.. Joel has a walk around the pirate ship thing (climbing wall/rope walk/slide/activity centre combo.. there's probably a shorter name in the catalogue), and then we play a little of Andy's Slam Dunk.. basically, basketball with various tubes and buckets that lead to different amount of points.. We're having fun with it.. Joel is practicing his throwing and while trying an overhead throw, the ball hits the wall and flies straight back into his face. Perhaps this isn't the safest sport after all.. even solo.
We move to the real basketball hoop over the other side of the playground and spend about 15 minutes shooting hoops.. Joel is struggling to get the ball high enough, and eventually he gets it high enough... just not at the right angle. He carries on, determined to score a basket.. but fails. He did magnificent though, as far as I'm concerned... so I treat him to a fruit pastille ice lolly. It's been a very good day today and Joel has been on top form...
Come tea time however, things start to go pear shaped... I'm giving Joel a hug as I'm working tonight and need to go shortly.. he's lying in bed and I'm sat in front of him with my arms around him. I'm already emotional and he turns to face his mom.. then I feel something wet on my hand.. Joel turns his head to the ceiling.. "Something just dripped on me daddy...".. I instinctively look up too, in the same way that you can get a crowd of people to stare at the sky by just standing there yourself...). Then suddenly it dawns on me, I look at the back of his head, and there's a glistening drop of CSF on his hair... then a little squirt hits my hand again.. I almost wretch...
"Good god!" I shout.. and reel at the fact that I've just quite loudly declared that something is drastically wrong... I hope Joel doesn't get frightened. Louise rushes to Joel's nurse and tells her that his CSF is leaking again. This is NOT what we wanted to happen. Apart from dreading having a shunt or a drain inserted, I'm worried about any delay to his radiotherapy and chemotherapy, increasing the risk of the tumour growing again, or spreading.
The nurse comes over, looks at it and calls for the doctor who arrives quite quickly.. he draws the curtains and looks at the back of Joel's head. It's leaking CSF quite badly again. The surgeon, Mr. Solanki, is not in - and the doctor needs to see if Mr. Solanki wants a drain or a shunt, or to just stitch the wound again... They put a pressure bandage on until they have more news.. I have to go.. It's too late for me to get someone else to cover my job for me and I can't afford to lose this client. Joel isn't in pain... but I'm still torn between staying or going... I'm questioning myself.. telling me I shouldn't go.. then worrying myself about losing an important revenue source... If only I had more time I could try and get someone else to cover the gig for me, but I only have 20 minutes.... not enough time.
I decide Joel is in good hands, a safe place, and has his mom AND a doctor by his side.. so I reluctantly head to the Academy for the gig..
I get to the gig just in time for the main act.. I don't have a particularly good time of it.. I can't keep my mind on the job, as hard as I try.... I head home, feeling very guilty that I didn't stay.. but what could I have done if I'd have been there? I know the answer is 'nothing', but it still plays on my mind.