Let's get physical... physical

I set my alarm for 7am today..  plenty of time to get Eve ready for school.  7am came and the funky riff of "Sex & Drugs & Rock & Roll" duly woke me with vigour.  Picture a movie scene where a hand emerges from the sheets and smashes the 'snooze' button on the clock radio...  this wasn't that enigmatic..  just a grunt, leaning over and gently pressing the 'snooze' icon on the iPhone touch screen.  Seems true of most technological advances - you miss that nostalgia of the yester-year (remember when you had to turn a dial to tune the radio, and an alarm clock could be set 'roughly to the nearest 20 minutes or so'?  Seems you can't win them all.

Anyway, two snoozes later and I have no spare time to grab 40 winks..  I sit up, wipe my eyes, look to Louise's side of the bed where Eve has been sprawled out like a starfish for the last few nights..  one leg on my side, an arm on my pillow, arm on the floor next to the bed and the other leg reaching over to the bedside unit...  Amazing.. and again, genetic.  As a child, I always had a double bed...  and made the most of the available space.  She's downstairs having breakfast with her nan who has been staying in Eve's bed for the last week.

I've only been sleeping in my own bed for the last 4 nights..  I stayed on the sofa for the first few nights after Joel was admitted, as I was returning home very late and had no idea which bed Joyce was in..  the last thing I wanted to do was climb into my bed and touch the icy cold flesh of the mother in law.  Not my cup of tea, though I appreciate some people might have no qualms about it.

It was only after a few days that she said she was sleeping in Eve's bed that I thought 'great, that means I can get in my own bed...  only to discover that Eve was sleeping in my bed.  I wondered if I should sleep in Joel's bed, then I thought how much the situation resembled Goldilocks...  and thought there's either a bear in Joel's bed, or Joyce might change her mind and sleep in Joel's room...  The sofa was therefore a safer choice all round...  even if it meant I was woken at 6 each morning.

7.30..  I shouted for Eve to come up to wash and brush her teeth..  I jumped in the shower after searching high and low for a matching pair of clean socks.  Joyce has very kindly been doing the washing while I've been at the hospital, but I don't know what she's doing with it when she gets it out..  I can't find any trace of it.  I have a bedside drawer that is full of odd socks..  I've always bought plenty of black socks...  they go with pretty much anything, and in my line of work, the last thing you want to see is a pair of white socks sneaking around the back of a stage or around an audience in the dark.  The problem is that I've ended up with so many black socks of different styles and brands, that they still end up getting mismatched and lost...  so in the relative darkness of an energy saving bulb, I struggle to find a pair of black socks of close enough match to each other..  I have one shade slightly paler than the other.  I could always say I've been cruising around with the car top down and one foot hanging out in the sunshine.

Eve bounds up the stairs, all smiles and the joy of a new fresh morning.  I'm trying my hardest to get a bit of life zapped into me by the 'Active Life' shower gel.  It doesn't work. I contemplate asking for a refund. I wash my hair with face wash, realise my mistake then wash it with a shampoo for blonde hair.  Eve tells me I don't have blonde hair..  I point out that at least it's not grey. Then remember, half of it is, and I'm certain the rest will quickly follow.

She brushes her teeth and washes her face with minimal fuss.  Usually I'm raising my voice to either stop the pair of them chatting and messing about, or telling them to stop arguing.  With just Eve here, I realise how grown up she actually is.  Joel brings out the child in her..  which admittedly, gets on my nerves at times - like when I'm trying to get them ready for school and they're arguing over who stands closest to the sink or who gets the face cloth out of the cupboard...  This morning, I miss the silliness. I've not had to raise my voice at all... I don't miss getting frustrated and raising my voice, but I do miss them both being there and causing me to get in that state.

 

The school run is quiet and subdued as it has been for the last week.  Louise spoke with Eve last night about the 'C' word...  I think it may have shocked Eve because she associates cancer with her grandad Ken, my dad, who died of secondary lung cancer before the kids were born.  She asks if the cancer is the same thing as the tumour that was in his brain, and I repeat that it's the same thing - just a different name for it, and that is why Joel needs lots of attention and love at the moment, and why he's in hospital rather than at home...  We get to school and parents and friends approach to ask about Joel's progress..  "He's doing great" I say, as if he's on holiday and sent a postcard from a hotel poolside somewhere exotic.  I wish he was doing great..  I mean, he is - considering, but "great" now is vastly different to what it was two weeks ago.

Eve tugs my arm - the bell has rung, and I'm still talking to the headmaster..  I can't imagine he'd mark her as late considering I'm talking to him and that's the reason she's not in the door yet - but I give her a big hug and four or five, maybe six kisses..  still falls short on her regular quota, but times are hard.  I pat her on her back and wish her a great day.  Mrs. Hart comes over to give me a hug..  I had a shave yesterday, first time in a week, so I point out that my cheek is smooth this time (as she had a hug on Thursday or Friday when my whiskers were lets say, a tad unkempt...).  As I say "it's lovely and smooth now.." and give the obligatory 'sales pitch' stroke, I realise that it was getting on for 24 hours since my shave, so clearly wasn't as smooth as I was advertising it to be. "Five out of Ten" she commented..  "Must do better" I replied, smiled, and continued with the headmaster.

 

Joel's form teacher is not very well either, so was not at school today..  but she has been looking forward to visiting Joel so Mr. Draper, the head, wonders when they'll be able to visit.  He asks if Joel is up for visitors and I say yes...  but it's probably best to bring a sparring mask in case Joel is in one of his stroppy moods again.

Eve has been invited to a friends house at the weekend for a sleep over..  She's really looking forward to it and already has an overnight bag packed.  I say overnight..  I think she's planning on staying for a few weeks considering how much she's packed.  I've checked it with her friends mother, and that's fine - so that's something less to worry about at the weekend.

I head back to the car ready for the journey into Birmingham..  Traffic isn't as bad as I anticipated so the journey is neither long or (relatively) stressful.. I reach the hospital and turn the corner to see the "Car Park FULL" sign..  dang it..  I have no spare £1 coins for the pay and display car park, so decide to wait a few minutes to see if anyone leaves the main one..  There's a car parked near the entrance..  I'm unsure if he's waiting for the car park or if he's actually parking on the street..  a car leaves the carpark, and this guy just sits there in the car for what feels like a minute or two after the 'FULL' sign changes to "SPACES"...  I'm shouting inside my head..  "Come on muppet...  move!", then I think he must be parked there as he's looking right at the sign but still sat motionless in the car..  I think I'll park first then go back and see if there's a pulse later.  As I pull the car along side to try and catch his attention, just in case he IS waiting - he realises that there's a space, think's I'm trying to cut in front of him, and makes a dash for the barrier...  eejit.  I pull back into the space he occupied and wait..  it's not long before another car pulls out and I'm allowed through the barrier to try and find that solitary space...  As I drive through, I'm surprised to see room for 5 or 6 cars...  I don't understand why they're blocking car park spaces?  Is this an extension of the NHS's bed blocking?

Talking of parking spaces - The hospital charges £10 per day for parking..  but you can apply for a special parking rate if you're going to be here for some time.. I believe it's £10 per week instead of per day..  They only have TEN of these permits, on a first come first serve basis.  I've filled out the form and handed it in, but not heard anything yet.  Why only ten permits?  They have at least 3 car parks to my knowledge, including a multi-storey.

 

I get to the ward, Joel greets me with a huge smile... "Hello matey!!!" I beam, and give him a huge hug.  A phlebomotist arrives to take a blood test from Joel, and I go to make a quick cup of tea..  It's not that I'm squeamish - I'm gasping.  And it's best I leave plentty of room in there. I return to the room with a lovely hot milky brew, and Louise says Rebecca, the Physio is taking Joel to the gym.. so I leave my tea and we follow Rebecca pushing Joel's wheelchair to the Gym at the other side of the hospital.  There, he gets on a HUGE physio bed (looks comfy, all it needs is a drinks holder on the side and somewhere to put a TV remote and I'll buy one).

Joel is manhandled and his leg muscles warmed up before the real work begins.  He can walk - but his balance is all over the place because of where the tumour was, so Rebecca gets what looks like a squashed ball (think giant Galaxy counter!) and puts it on the floor, kneels in front of it, and asks Joel to stand on it. He laughs and giggles - it's fun..  but there's a serious side to it.  We all notice that he's standing on the outside of his left foot, twisting his ankle sideways.. it looks painful, Joel is unaware.  Rebecca tries to lift his leg to straighten his foot..  without success...  We'll call it a work in progress..  there will be many more days of this.

Then he has to stand on solid ground and balance on one leg for as long as he can.  He reaches 8 seconds on his right leg, only 4 on his left. It's a great effort, and he beams with pride and looks to us for our reaction.  We're both really smiling and cheering him on.  We're proud of him, and he's pleased as punch..  it's still a long way off what he's normally capable of.

We think of the ballet exam he was due to take in a few weeks time. He loves ballet, and isn't a bit embarrassed about being a boy in a predominantly girl class.  We're happy he likes ballet.  I'm not a fan of it myself, but I think it's a great way for kids to improve balance, and dare I say it, discipline.  I know I wouldn't dare mess about with Miss Avril, Joel's ballet tutor.

Next, the pilates ball.  Is there a more technical term for this? Rebecca asks Joel if he's seen one of these before.. he smiles and squeals "YES!!".  However, the one he's seen has a smiley face on it with two horns that he bounces around the patio on...  I'm afraid Joel, there's no grip on this one..  Rebecca plonks his bum on the centre of the ball, and holds his waste while asking him to roll forward, backward, left and right..  then to bounce up and down on it.  If THIS is what the gym at David Lloyd's is all about, then sign me up..  It looks great fun...  Joel does really well on this exercise - all about corrective balance and moving his legs to counter his upper body weight.

Then I have to join in the next exercise which involves me being in goal.  What a laugh.  Me..  in goal.  I still don't understand the offside rule and Rebecca puts me in charge of goal!

She stands Joel about five feet away and asks me to roll the ball to him..  that's easy enough.  It's a leather football, plastered in Symantec.  "At least the ball should be free of any viral infections" I think to myself.  It's quite deflated, and the leather panels mean it doesn't roll in a straight line.  At least that's my excuse.  My first roll goes wide of Joel.  I mean - well wide.  Very poor first attempt dad.  It's so wide, Louise has to get up and retrieve the ball before it goes into a private cubicle where another young boy is being briefed on using his crutches.

I try again, and this time manage to get it straight to Joel's feet..  he kicks the ball back..  straight to me.  We try again, another great roll straight to him..  again, he prods it back with his right foot.  "Now roll it to his left foot" Rebecca demands.  "Hang on a moment", I'm thinking, "I've only just been able to get it to his right foot"...  I try, and once again it goes wide.  Second time is lucky though, and I aim it to his left foot..  but he knocks it back with his right foot again.

I roll it back, and this time he makes the effort to use his left foot - but he's clumsy..  he steps over the ball, and back kicks it.  Definitely something going on with that left side.  We try again, same thing...  Third time, he whacks it back, and scores a goal.  (My knee popped, honestly).

That exercise is over, and we move onto the final exercise..  this looks even more fun than the pilates space hopper thing.  The scooters!  They're like big roller skates that you sit or lie on..  I'm not sure if they're intended for this kind of exercise, or if they're to exercise amputees..  it reminds me of those modified skateboards for dogs who lose their legs...  but crossed with a luge.  Either way, they look fun.  Joel has to sit on the end of one, and use his legs to pull himself across to the other side of the gym.  Rebecca expected him to use both legs in a walking fashion, but Joel opted for the both legs at the same time approach..  he'll make a great rower I think.

A race is arranged between Joel, and another little boy called Adam.  There's a bit of a collision half way along, but they untangle themselves and Adam wins.  Joel slipped off the edge of the scooter and landed with a bump..  he accepted defeat graciously, in fits of laughter. We were both loving seeing him having fun.

Next, the backwards race..  back to where they started..  Joel just managed to pip Adam to the post.  I was dying to have a go.  Maybe another time, when no-one is looking.  I'll bet the physios have a riot on them at the Christmas parties.

Joel is wheeled back up to the ward.  Rebecca handles the wheelchair with a degree of skill and finesse not seen since the Stig left Top Gear.  Perhaps SHE was the Stig.  She's certainly better at the wheelchair than I was..  I think I dented more lifts, walls and doors than the hospital would like when I tried pushing him last week.  I think Joel likes the wheelchair.  It's not the prettiest thing in the world, but when you're being ferried around by someone elses leg power, it's got to be good.  Mind you - seems to defeat the object of physio when you're given a lift there and back, no?

We get back to the room and Louise is considering going to pick Eve up..  partly as a way of escaping the confines of the hospital ward she's been in for a whole week, and also because she wants to treat Eve to a nice surprise when she comes out of school.  Last night, Joel said the sweetest thing as he was trying to defy sleep..  While tugging his hair as a sign of extreme tiredness, he'd said to Louise "Mommy, can Eve come and see me tomorrow please?  I miss her". We both glanced at each other and did that parent thing...  "Awww..."

Louise was going to go home first - her mom had cooked a dinner for Eve and was planning to catch a bus into Walsall, walking up from the town centre to the school, then catch a taxi back home.  Uncle David couldn't pick her up tonight, and as Joyce doesn't drive - this was the only option she had.  Lots of people have been offering to transport Eve to and from school, but it's one of those favours we daren't take up the offer of.  Not that we don't trust anyone..  but it feels like such a burden.  We live on the opposite side of the town to most of the other parents, so it seems very unfair to expect anyone to travel 3 miles PAST school in the opposite direction to pick up someone elses child, then drive back to school, and do it again on the evening..  Louise decides she WILL go and pick Eve up tonight and bring her to the hospital, but at the risk of wasting Joyce's dinner that she's cooked.

 

While she's gone, I'm watching Joel.  He wants to play his iPod..  We want to limit him.  I agree to let him play it for 5 minutes, knowing that he'll play it for much longer if he can get away with it, I set the timer on the iPod to 5 mins, and hand it back to him..  he plays a game called "Collisions".  I don't mind him playing this - it's a challenging puzzle game with no violence and plenty of physics.  At the end of the timer, Joel hands the iPod back to me and gleefully says "My time's up!", with a smile.  I put the iPod on the side and ask if he'd like me to read book 3 of his Beast Quest series..  he nods, but looks a bit tired..  he has a quick tug of his fringe, then I get him comfortable on his bed...  I start to read the preface.  It looks like it's about a yeti who causes mudslides to envelope a village on a mountainside.

As I'm reading, I'm aware that I'm still doing that damned Richard Burton voice.  I can't help it.  I consciously make the effort to avoid it, but still slip into it.  I even suspect people walking past the room are thinking "Why's he talking like that???".  I think Stephen Fry makes an excellent story teller - but I still think the Richard Burton voice works on these Beast Quest books.  Even if the target readers have no idea who Richard Burton was.  On second thoughts, I don't suppose many of them would know who Stephen Fry is, unless you say "He does the voice on Little Big Planet".  I continue the story in Richard Burton mode.  People still seem to be making multiple journeys needlessly past my window, pointing and sniggering.

Once again, Joel rolls over onto his side, tugs his hair, pulls his bedsheet over him, and goes to sleep.  He seems to do this every time I read the books in Richard Burtons voice.  Why didn't I know this when he was a baby?  Eve would go to sleep within about 10 seconds of you stroking her face with the corner of a wrapped up tissue... Joel would stay awake for hours..  Even recently, he goes to bed at 7-7.30ish and he'd be awake, downstairs, and setting up the games console at 5am..  he learned how to set it up very quickly so he could tip-toe downstairs without waking anyone up to get a couple of hours game play in.  Devious, and yet charming.

I stare in amazement at the boy who drifts off to sleep while I'm reading.  I'm reminded that I've done that to myself more than once..  I've been in conversation with people and bored myself while I'm talking, so much that I've completely forgotten what I've been talking about and stood there with a blank expression on my face with people staring at me as if to say "What IS your point?".   But for my son to fall asleep on me while I'm reading an adventure story...  I MUST be so boring.

I place the bookmark on the page and close the book..  I'm sure it won't be long before...ah, and there's Colin, as expected.  Bringing the sheet around for tomorrows meals.  I tell him that Joel has only just drifted off, he says "That's fine, fill it in soon as you can..".  I wonder if Joel will get that Kit-Kat from the other day.....

 

Joel slept for about 30 minutes, then lunch arrived..  Barbecue Chicken Wrap..  again..  Joel ate it wonderfully, spilling only the slightest amount of bbq sauce onto his top..  quickly wiped away. He finished one and didn't want the other..  not surprisingly given their size - they're quite filling..  but he still managed to eat the bag of fruit (apples and grapes), and a bag of Cadbury's Buttons.  He even saved the last one for Eve.  He really does miss her.

He has a few sips of squash, and I ask if he wants the toilet. He nods his head, and delicately climbs off the edge of the bed.  We wash hands, he waits patiently for me to squirt soap on his hands, and he's learned how to 'scrub up' and do the 'inter-digit' scrub as well.  This should come in handy after his next bag of Quavers when he has cheesy fingers...

He gets back into bed, and goes back to sleep...  waking up about 5 minutes before Louise returns with Eve, and Joyce in tow with Marion, asking "What time will mommy be back?".  I'm feeling even more useless.  Not only did my story telling bore him to sleep, but the first thing he asks for when he wakes is his mommy.  That's understandable, she's been at his side solidly for 24 hours a day for over a week, but still jarring.

 

The meal Joyce cooked is brought into the hospital with Eve, warmed in the microwave, and she sits at the foot of Joel's bed and eats the lot while Joel's burger that arrived a few minutes earlier is cut into quarters and scoffed without waste.

He's bulking out a little more.  With the combination of steroids and lack of any relatively strenuous exercise, he's not having chance to burn of any calories.  He can afford to put a bit of weight on at the moment..  when his meds start, he'll need as much in reserve as he can get.

Louise brings a lego model from home that he'd had for Christmas..  Lego Star Wars..  quite a simple one. Joel struggles again to get the pieces together.  I film some footage of his fingers fiddling with the small pieces.  I've not mentioned it to any of the doctors yet - Louise thinks it was disappear, but she suggests we'll ask Mr. Solanki when we see him next, just in case.

 

Again, he starts to get tired and frustrated and on the very last piece of the lego model, he throws the it across the bed and begins to shout.  Apparently I'm a stupid muppet.  Now it's difficult to tell if he's back to normal or if it's still the medication or effect from the swelling..  He calls me a stupid muppet at home, so at least I feel a little more welcome than I did when he just punched me in the face.

There's still no news of when he can come home..  He's due to have his Hickman line in on Friday, and was supposed to be seen by the opthamologist Dr. Barry yesterday, but nothing came of that.. we're not sure when that will come - possibly Thursday...  I'm sure last week he said it would be Thursday for sake of  'continuity' but then someone told us it would be Monday.. then that didn't happen, so anyone reading this has as much idea as we do.

Apparently, the Hickman line (a special cannula they insert in the chest which can be used to take bloods and give the chemo so it saves having to keep injecting into the veins and the risks associated with it) is also called a 'Wiggly' - and children usually give their 'wiggly' a name...   That takes me back to my pre-pubescant days with my nan telling people to 'give her a tinkle'.  Oh yes. My 'wiggly' was called a "tinkle".. of course, we're talking different Wiggly's now, but much confusion and hilarity ensued over the years.

 

I'm wondering what Joel is going to call his 'Wiggly'..  I think "Wiggly Woo" is a good name.  Louise suggested Solanki, after his surgeon, or Indy - for Indiana Jones...  
Joel chooses Steve.  Again, I'm taken back to my childhood when I named my first pet, a Russian Hamster, after my best friend at school..  Alan Woolford.  That was the Hamsters name too.  Not Alan, not Al, but "Alan Woolford".

Joel had his cannula removed from his foot and his neck the other day, and it's left a couple of puncture marks that resemble snake bites. So in tribute to the wildlife expert and Deadly 60 presenter Steve Backshall, he's settled for "Steve".

Joel has done some good work today - some physio (amazing how seemingly little exercise can wear him out so quickly and so much), and he's even done some homework on the computer thanks to the BBC Bitesize website.  I hope that isn't part of the recently announced cutbacks faced by the BBC Online department...  It's been a godsend while he's been in hospital.

It comes to home time.. Eve starts crying again - a mixture of missing Joel and her mum.  I don't come into the equation..  a little upsetting, but acceptable.  I tell Eve that I'll be home soon to rub her back, then remember I've offered to take them home anyway, so off we go..  Joel walks us to the door of the ward again, but he's a bit tired and doesn't really want to participate in goodbye kisses and hugs.  I get one (yay!), but no-one else does.

This doesn't make me feel any better.

I drop Aunty Marion off at home first, getting out the car to open her door as the back doors have the child-locks on.  I then say goodbye and get back into the driving seat..  Marion gets out of the car and walks off...  leaving the car door wide open.  I have to get back out of the car to shut her door.  I shake my head in disbelief.  Even Joyce comments.  I think even Eve did.  There was a bloke replacing a spare tyre by the side of the road in the same cul-de-sac, and I think he may have had a chuckle too.

Shortly after, we arrive at home.  Our next door neighbour Eric stops me to say how shocked he was at hearing the news about Joel.  Eric is a lovely chap, and offers to sweep our driveway. He's bored. That's not my impression, he admits it.  His garden is so clean and tidy..  his lawn is like a bowling green.  There can't be anything more that needs doing to his garden and they're probably depressed at waking up every morning feeling like Margo and Jerry Leadbetter in The Good Life looking over our garden with ducks, rabbits, cat, and toys strewn all over the unkempt lawn.

I don't mind if he wants to sweep our drive..  if it keeps him occupied, I'm only happy for him to do it.  I wonder if he's offering not because he's bored though, just fed up with the leaves making it look untidy..  Sometimes I wonder if he's thinking of selling up and moving, and doesn't want any prospective viewers to be put off?

I kissed Eve goodbye and drove back to the hospital.

 

Joel was all smiles again when I arrived back - but Louise said he'd been really stroppy while I was away, shouting and screaming at the top of his voice in a strop.  He gives me a cheeky grin...  I think he know's he's doing it, but what can we do?  I don't know for sure so have to assume it's the op or meds that are still the cause...

I think they've stopped his steroids tonight, so we'll see in a couple of days how his mood swings go...  fingers crossed. He can be stubborn at the best of times..  I dread to think what he'd be like in the worst.  He's worked hard today, and has been worked hard..  but his strops are awful..  and being tired usually brings them on....

Within minutes, he's asleep... the day has been hard on all of us... but it's really taken it's toll on Joel.