Sunday, 30 January 2011

Easy like Sunday morning...

On Sunday morning, Joel was fine..  I had to pick Eve up from her friends house before coming back to cook Sunday lunch, but time was against me so we decided that we'd have a snack for lunch, and then a meal for tea..

Louise decided to take Joel down the road to her moms in his Ferrari Red Wheelchair...  I watched from the bedroom window as they left, and cried.  As Joel looked up at me and waved, his face was beaming.  He seems so happy - oblivious to the gravity of the situation he's in..

Happy boy


When I arrived at Eve's friends house, her dad said "Did you get the toilet roll?".  Dare I forget the toilet roll.  I'd tried to FaceTime Eve before I'd set out, but as I found out, her iPod had run out of juice..  lord knows how long she must have been playing with it...  but she'd had a great time making jewellery, playing the piano, playing pool...  I think she'd like to live there...

When we got home, Joel and Louise were in the living room.  A blanket spread out on the floor, and Joel was sat upright on the blanket with crackers & cheese..  I half expected a bottle of Chianti next to him as well, but thankfully not..  He'd insisted he wanted a picnic for his lunch, so a picnic he did have..  and enjoy it he did.

He didn't have an appetite for the evening meal - I wolfed mine down..   a little too much too fast.  I'd made some apricot, orange and sweetcorn stuffing - Even Eve had some of that.  I had too much and sat on the sofa unable to move for a few hours after.  Joel had a bath, carefully, as not to get Steve Backshall wet (the name he chose for his Hickman Line - which he thought was a great idea at the time, but now seems a little shy when people ask what he's called it..  That's the Alan Woolford effect for you!)

When the kids had gone to bed, Louise and I were stood in the kitchen.  She poured her soul out to me and I felt helpless.  What could I do?  She said that the seed was there from the start, that nothing could have prevented this..  Joel just had a timebomb from the moment he was born..  waiting to go off.  She's right, but what consolation is it?  Again, we find ourselves studying the last 12 months, picking out little things that could have been a sign..  but as Joel was 5 - they were also the signs of a typical 5 year old boy.  Was there something we missed?  Could we have had this diagnosed sooner?  I doubt it, so does Louise - but you still kick yourself for not thinking about it sooner.

The reality is of course, even if it HAD been detected sooner - it still wouldn't change the outcome..  he'd still have a brain tumour that needed removing..  he'd still need chemo and radiotherapy.  There was NOTHING we could do to prevent it, and if we HAD been concerned sooner, the symptoms may have been passed off as so many other things..  we all had flu over Christmas - so that would explain his headaches..  there were stomach bugs going around school - which could have accounted for the vomiting, and as for losing his balance?  Well - what 5 year old DOESN'T lose his balance?
The fact that his P.E. teacher, ballet tutor, and dance class teachers never noticed anything untoward gives us a sense of relief that maybe we did find it as soon as we could.  It's like a big jigsaw puzzle that you only see the big picture when you fit all the little pieces into place.  We couldn't have spotted it sooner than we did.

But we're still riddled with guilt.  I for one feel guilty for all the times I'd shouted at Joel for messing around..  climbing stairs and bouncing off the walls, then crawling on his hands and knees..  I thought he was being ridiculously silly, yet he was probably panicking and wondering what the hell was going wrong with him that he couldn't climb the stairs properly...  and walking along the school path - he'd walk all over it... never in a straight line...  sometimes stumbling off the path, and I'd have a go at him for being unruly...  Yet not ONCE did he turn round and say "Dad, I can't help it... I'm TRYING my hardest..".

I couldn't stop worrying about how Joel would react to losing his hair from the chemo..  it's not that he has nice hair..  he does have lovely long eyelashes though..  they're so long, and I've promised myself that when he starts losing his hair, he won't be alone..  I'm going to have mine shaved off too..  I'll probably look for sponsorship when it happens, so don't stop reading the blog just yet!

My beautiful boy

I'm not looking forward to it myself, but I don't want Joel to feel different.  At least I can take solace in the fact that he's at a decent school where it's unlikely that kids will pick on him for having no hair..  that said, he's unlikely to be back at school for some time.

We did a lot of crying last night...  but worse was to come.


Saturday, 29 January 2011

We gotta get out of this place..

Saturday morning.  Usually we'd be getting the kids ready to go to Walsall College where they enjoy a dance & theatre class run by Carol Harvey-Barnes.  While they'd have a couple of hours there, Louise and I would have a walk around the town, usually ending up in Starbucks before going to pick them back up at 11.30..  then we'd sometimes head over to Telford for a walk around the shops there - and to see the clock with the bubble-blowing frog.

Today, we stayed in.  When Joel had gone to bed last night, I'd asked him to do me a favour for the next few weeks... that he doesn't try to go up or down stairs without mommy or daddy..

For the last couple of years, he's been getting up at around 5am and making his own way down the stairs to play on the PS3 or Wii..  but now, with his balance all over the place, that worried us.  He promised us he wouldn't..  I told him if he wanted to go up or down stairs, he should ask us to help him, as we'd need to be underneath him as he goes up or down..  I think he understood why and realised it's for his own safety.  He stayed upstairs this morning until Louise came down.  Last night, he slept in our bed - on my side.  I slept on the sofa.  Before I went to sleep, I looked around his room - his toys and his desk...  his posters.  I felt like I was grieving the loss of a child. In a way, I am.

I woke up late this morning, comparatively..  not long after, Joel's granddad Percy came to visit. I made some tea and while in the kitchen, I heard him asking Louise about some medication he was on.  I think Louise was losing her patience a bit..  she's given up work for the time being.  There's another knock at the door and this time it's Louise's brother, David.  He didn't visit while Joel was in hospital - he couldn't.  He couldn't face Joel in the hospital for fear of breaking down.  I understand how he felt, so he made sure that he would visit Joel as soon as he came home.  David (and his wife Carol) has been a godsend over the last two weeks, picking Eve up from school for us and giving Eve and his nan a lift to the hospital when possible. It was good to see him, and gave me chance to thank him for helping us out.  He graciously said it was nothing and that we wouldn't need to ask.


I'd agreed to let Eve sleep over at her friends house for the night..  she'd been looking forward to a sleep over for ages..  and her friends parents kindly said it was no problem.  We thought it would be from Friday night to Sunday lunchtime, but with Joel coming home Friday night, Eve wanted to stay at home on Friday to greet him..  That was sweet.

I drove Eve to her friends house on the afternoon, and Eve is quiet in the back of the car again.  Every set of lights where I stop, I ask if she's ok..  she's staring out of the window and when she makes eye contact with me in the mirror, I see she's welling up.  "What's the matter sweetheart?" I ask her.  
She wants to go home.  She's missing Joel, and missing her mom.  I ask myself if I should turn around and go home, or pull over and have a chat..  in the end, I carry on..  telling her how much fun she'll have, and how her friend is excited at the thought of them having a sleepover.  When we arrive at the house and park on the driveway, I switch off the engine, undo my seatbelt and turn around to talk face to face with Eve.

"Are you ok?  Do you still want to go home?"

She looks at me with tears in her eyes and nods..  I try to comfort her with words as best I can..  "You'll have a great time Eve..  and I'm only a phone call away if you want me to pick you up!".  She smiles, gets her bags, and we get out of the car..  She stares in awe at the house.  It's a lovely house.. very art-deco to look at from the outside.. almost like an old cinema, but very funky and modern inside.  I'm offered a tea which I accept and take a seat.  Eve is off already, running around the house with her school friend.  She'll be fine..  I sit and chat for a while, as time flies.  Louise calls..  I have a shopping list AND I'm supposed to be working tonight.  "Don't forget the toilet roll!".

I'm sure we've got some, but it's a reminder that I need to hurry anyway if I'm to make the LG Arena in time.

I stop at Sainsbury's on the way home..  get all the items on the list, including toilet roll.  Normally, I'm a stickler for getting the best bargain..  "12 rolls for £2.67...that's 22p per roll..  ooh,  9 rolls plus 3 free for only £2.49"...  but tonight, I just pick up a packet of 4 and don't even think about comparing prices.  Worrying about the value for money of toilet roll seems pointless these days.

I get home, unpack the shopping and get changed for work..  Joel is sat on the sofa playing Angry Birds....  he's managed to get to level 18 already.  I'm still on level 5.  Before I leave, I ask for a kiss and tell him I love him.  He replies in a warbled voice "I lo-ove yo-ou to-oo-oo".  I don't know why his voice is so childlike now..  I hope it's not permanent...  it's slow and cumbersome, and painful to hear when you know how articulate he was before with his speech.


My night is wasted.  I'm supposed to be shooting a female X-Factor contestant's concert for a Sunday paper's lead review and there's no pass..  Normally the production teams are quite flexible and accommodating (especially when it's coverage of this size!) but tonight, they say no..  they don't even have the decency to tell me to my face - asking me to wait 15 minutes while they sort it out, then after 30 minutes and I ask the box office to chase it up, they pass a message back saying "It's a no". I'm not too bothered about not shooting her - but I am bothered at the fact that I've come out expecting to earn some money for the first time in two weeks and leave empty handed when I could have spent more valuable time at home with Joel.  I let the paper know that they refused access, they have a mild panic attack as now they have to change their plans for the music section next week. 
Part of me hope's they cut the review altogether, but that wouldn't be very fair on the reviewer.  Thankfully, the picture desk say they'll pay me a decent fee for turning up so at least my journey hasn't left me out of pocket.


I get home just before 9pm and Joel is still awake..  thank goodness. Eve has been trying to Facetime me, so I facetime her and she speaks to Joel for a bit.  She wanted to facetime Joel but bless her, decided against it as she thought he would be resting in bed, and didn't bother me because she knew I'd be working..  or thought it at least.

Joel has great fun speaking to her and actually SEEING her..  We're glad they both have iPods now..  Facetime is very useful..  even if the technology has been around for years before Steve Jobs championed it as his own idea...

We say goodnight to her - she looks like she's having fun.  She's happy anyway.  Joel also enjoyed his first FaceTime experience.  Thanks Steve.

No sooner has Eve said goodnight, Joel wants to go to bed.  I carry him upstairs and he nestles his head into my neck and shoulder.  Before the tumour, he'd never be so close as this.  As much as I like the loving I get from him now, I'd still rather have the child back who doesn't want to get close, the child who can't sit still for more than 30 seconds, the little boy who would ignore every request for a kiss and a hug from me.. I feel like I've had my child taken away from me and substituted with another.  I don't like it. I want my son back.

Tonight, I sleep in Joel's bed as he sleeps in the arms of his mother.  I wish our bed were big enough for the three of us.  I don't want him thinking that I'm not there for him - but I don't want to push myself on him over his mother either.  I think she's more important to him than I am at this moment.  He's always been closer to her than me, although lately, he's been the closest he's ever been with me..  It's like he's forgotten that he's been his mums boy..  I don't want to take that away from her, so I stay in his room tonight.  Lonely.




Friday, 28 January 2011

Pie & Chips & Mushy Peas... Is all my brain and body needs...

It's a fairly good start to the morning.  I managed to sleep through until 7.15..  no rude awakening by the smoke detector..  looks like I've made a spider homeless though.  It was him or me.  Although I now think back to the time I hoovered up a spider as a child and my dad telling me "That was probably a mommy spider and all her children are at home wondering where she's gone...."

I've always tried to move spiders outside rather than kill them, and I make a point of telling my kids how important it is not to kill creatures 'just because they don't like them'.  I'm terrified of moths, spiders, creepy crawlies of all shapes and sizes, but I'd always try to get rid of them without harming them..  I've dripped with sweat trying to catch a spider in a glass with an envelope before flicking it out the kitchen door, running in slamming the door behind me in case the wind blows it back in...  Eve is terrified of spiders too, but thankfully, I know she'd not kill one.  Aside from the fact that she's listened to what I said, I don't think she'd get within reach to kill one if she wanted to..


I'm about to leave the house to take Eve to school and I remember that Joel had made cookies yesterday while I was away..

I get to the hospital this morning and Joel is happily playing 'Cat Physics' on his iPod..  He's reached level 22 in a day.  It's fun, and it helps him learn about the effects of gravity, velocity, reflection etc..  he's racing through it.

The baby in the bay next door is missing..  I ask Louise what's happened to him..  "The nurse has taken him for a bath" she says.  No-one has been in to see him.  It's mid morning before anyone does, and as the woman approaches the bed, the baby just sits there with no emotion..  "It's mommy..  " the woman says..  "Hello <name withheld for privacy>, it's me, mommy".  This is obviously a child who doesn't recognise his own mother.  He doesn't make any attempt to reach out for her, and all through the night he's been crying out for mommy..  different nurses comfort him, and he settles with all of them.  He doesn't know who his mommy is.

They're here for less than an hour before they've left again, but not before deciding what they want for lunch..  pie and chips is one of the items I heard..  with mushy peas..  Lovely. Get your priorities right love.

In the meantime, Joel has been without food since 6.30am, and has been on just liquids until 11..  Dr. Bennett comes to visit us - he's an anaesthetist normally, but today, he's the one putting the Hickman line in.  He draws plenty of diagrams which aid me, and is very helpful.  He tells us Dr. Underhill will be Joel's anaesthetist today and that she'll be along later..  she joins us shortly after, and talks to Joel about iPhone apps.  She has an iPhone and Joel has pleasure in showing her Cat Physics.

There's a chance he could be in surgery shortly after 1pm, so we get him into his gown and ready to go...  we still have NO idea if he's going to be allowed home tonight.

Colin turns up with Joel's lunch order, despite him being "Nil By Mouth" until after the op.  Louise asks him to put Joel's name on it for when he gets back from surgery.  Colin apologises and takes it away for later.

Shortly before noon, someone from the family of the boy next door returns to the bed side..  the reek of alcohol fills our bay, and it's not hand gel.  There's no sign of the mother or father.  The little boy is beautiful, and doesn't know who his family is.  I go to the kitchen to make a cup of tea, and they're in there..  One guy, appears to be an uncle figure, says "There's a pub next door"... that says it all to me.  Beer and chips, that's all they care about..  a child less than 2 years old is sat in the bay next to us, first time he's been awake for 3 days, with fractured skull, fractured jaw, and fractured pelvis..  and they're wondering where the nearest pub is.  Scumbags don't deserve children if you ask me.

Joel is delivered to the operating theatre

We're called to say that Joel is about to go into surgery to have the Hickman line put in..  we're allowed to go with him to the anaesthetic room and the team are there ready to get him to sleep..  they opt for gas so as to protect his nerves.  My only memory of gas is concentric circles, red and yellow, decreasing, with the theme music to Dick Barton playing..  then my nose feeling like jelly, and a gorgeous blonde dental technician waking me up.  I'm sure she felt a mutual attraction to the 7 year old boy having a filling..  I've lived with that thought for 32 years.  Please don't shatter it.

Dr Underhill, the anaesthetist, lets Joel play with her iPhone.. having seen him playing with his iPod touch earlier.  She loads 'Talking Tom' and tells Joel how to stroke him, feed him, and make him scratch the screen..  all the while, slowly increasing the amount of 'magic wind'  We all laugh, with the image of Spongebob & Patrick and their magic bag of wind...  Before long, he's asleep..  we kiss him, wish him luck, and leave the operating theatres.

We go for a bite to eat in the cafe downstairs...  fish and chips (it is Friday after all)..  I begin to feel like one of the scumbags from the bay next to us..  except I'm drinking diet coke instead of Fosters.

We head back to the ward and sit for a while by the empty bed.. I can't remember what we talked about..  If I'm honest, I think we may have sat there silent....  It wasn't long after we returned anyway, before they said he was ready and we could go down to collect him..

As we walked into the operating theatre, a nurse came from behind a curtain where there was a bit of commotion and said to our escort "Not yet".  I felt horrid. "Oh dear god.. what's happened...".  Horrible thoughts went through my head, and the nurse reassured us quickly by saying "No problem, he's just on the bed pan...".

Turns out he wasn't..  while coming out of the anaesthetic or during his lumbar puncture, he'd soiled his pyjamas and the bed sheets...  so they were quickly trying to clean up all the mess.  He was horrified, and from embarrassment, clammed up.  He wouldn't talk to any of the nursing staff.  As soon as they said we could go in, we squeezed his hand, kissed him, and told him everything is alright and not to be embarrassed about anything.  I said to the nurse who escorted us "Been there, seen it, done it..." and she replied "Yes, I think we probably all would during an operation like this...".  I pointed out that I was actually talking about when I returned from an Egyptian cruise, not an operation.  I don't think she saw the funny side of it.  More a sympathetic laugh for Louise.

Eventually, Joel became a little more relaxed and open, and we returned to the ward..  and there was a gathering around 'the boy next door'.  We had our curtain closed halfway along their cubicle..  not sure why it was only half way..  I don't think we'd actually opened or closed it, but that's how it was..

Joel became more aware of his surroundings and said he was hungry... Louise asks for Joels dinner..  they can't find it.  They have no idea where it is. Great. He's had nothing to eat since 6.30 this morning, and they can't find his lunch that we'd asked them to save for him...


Joel still hasn't had his CT Scan either..  somebody forgot to book it. Mr. Solanki had ordered it, but someone lower down the ranks failed to action it..  we're told it's not going to be until Monday now, so Louise has to prepare for another weekend in the hospital.  What a waste of resources..  just for a CT scan - we'd have to take a bed for another 48+ hours....

At 4.40, Patrick - Joel's nurse for today comes to us and offers us a deal..  if he can get us down to the Radiology department before 5pm, they can do a CT Scan now, and we can go home tonight..  It's a race against time as Patrick has to order a porter (for health and safety reasons apparently, nurses and parents can't move beds!), and Patrick has to ensure the bed has portable oxygen and a SATS monitor.  The porter arrives and navigates us through the corridors, around all the abandoned trolley beds, wheelchairs, and other patients until we arrive at the lift to take us to the ground floor.  The lift door opens, and it's full..  no room, so we have to wait for them to disembark at their floor before being able to call it back to ours.  Tick tock..  it comes back and we continue..  we arrive at the radiology department and no-one is around..  it's 3 minutes to 5..  looks like we're staying at the hospital for the weekend.

Then a young lady walks around the corner and says "CT Scan?  Is this Joel?...  Can you confirm date of birth?".  There's silence as I wait for Joel to respond..  then I realise she's actually talking to me.  "Oh sorry - I thought"...  never mind..  "er..  " I continued..  I was trying to remember the year..  I always get confused with the years..  "Twelfth of the Twelfth, Two thousand and...  er... four".

Great.. Password accepted!  We're ushered into a room, given heavy lead lined gowns and allowed to hold Joel's hand as he enters the biggest donut he's ever seen..  He laughs when I suggest this..  not the best idea as he's got to keep still.  He's perfect - so still..  the radiologist comes out, gives Joel 3 stickers, and says the scans will be available immediately for the doctors to have a look..  and we're taken back to the ward by the porter.

Machine that goes Ping

Before too long, Joels tea arrived..  Spaghetti Bolognese...  Louise starts feeding Joel and he's loving it..  his favourite.  Then Maggie from the cancer ward comes to visit us and explain what's going to happen next week..  I take over feeding duty while Louise talks to Maggie.  All of a sudden, the girl in the next cubicle opens the curtain fully and gawps at Joel..  unbelievable.  I'm too shocked to ask Maggie if she'd mind closing the curtain again..  I carry on feeding Joel and secretly praying that social services are looking into that boy's care.  I have a feeling that the nurses are too.

A few minutes later, Joel has spaghetti sauce all over his face..  there are bits of spaghetti all over the makeshift napkin in front of him, and he still has half a plate left, AND a nice looking piece of garlic bread.

Dr. English and Mr. Solanki appear and say how good Joel is looking.  Dr. English tells us that he's looked at Joel's CT scan and it's looking good.  Then he just says out of the blue, completely unexpected "And the CSF is clear, there's no sign of the tumour having spread".  Louise puts her hand to her mouth and immediately fills up and sobs with relief.  I start to cry - holding a plate half full of spaghetti bolognese..  I feel a wave of joy just hit me and knock me back..  They all quickly pull the curtains around our cubicle.  I think some of the other people on the ward must think we've received tragic news, especially hearing sobs coming from being the curtain.

I look around for somehwere to put the plate down and can't see anywhere..  then I see Joel's face..  a look of bewilderment - part fright, part concern, part surprise and part happy..  he's crying too, and laughing - and smiling.  Louise puts her face in front of his and says "Joel, I love you so very much, and I'm so so happy".  Joel's smile reaches across his face and his eyes are glassed up..  and he doesn't know whether to snigger or cry..  I think it's pure raw emotion going through him..  I know it is with us..  there's no explanation for him to cry..  It's too soon for him to get a reaction from seeing mom and dad cry..  it's like he understood what Dr. English had said and what it meant for him too. Dr. English finally said "...And so, Joel is definitely in the standard risk group".

How could I be so happy at hearing confirmation that my son has cancer?  Of course, I'm not happy - but I'm over the moon that it's standard risk, and not aggressive. It means an 80% chance 5 year survival compared to only 60% for aggressive risk.  But that's still not 100%, so while I'm ecstatic, I'm still apprehensive - but so far, this is on par with Mr. Solanki telling us the resection of the tumour last week was a success..

The family next door all seem to be getting ready to go.  They have their coats on...  Looks like no-one is staying again.  The father goes over to the nurses station and says that he's going, and the nurse gives him a filthy look, full of contempt.  They're just dumping this child on the ward for the staff to look after.  It's not fair on the child, the nurses, OR the other patients on the ward who can't have the full benefit of the staff because they're having to change nappies and basically babysit!

They all leave, and it's less than 90 minutes before the mother and father return, with their tails between their legs.  We think they've been called back to the ward to look after their child.  These are the ONLY parents on the ward who are not staying.  Mind you, it's Friday, and the bar around the corner probably has a 2-4-1 promotion on bottled beers tonight.

It's 9pm before we're finally discharged from the ward.. we're back on Monday to meet Dr. Ford and Dr. English for the plan of Joel's Chemo and Radiotherapy (and more physio!), but for now, we're clearing out our food cupboard, filling the car, and coming home.

I make a couple of journey's to the car to take bags of clothes, food, gifts etc.  The special parking permit allows us to park in the staff car park which is a distance away (not too far), but at least it's all undercover and avoids having to walk around the dark streets.  The only problem is that it's multi-storey, and they've decommissioned the lift..  it doesn't work, it's dead..  lifeless..  so it's all narrow flights of concrete stairs...

I'd moved the car earlier from the 4th floor down to the 1st floor, but it still meant that I had to wheel Joel in his wheel chair up the exit ramp of the car park and up another 'down' ramp to get to my car because the lift had been taken out of service..  I'm not being funny, but giving 'long stay parents' a parking pass with no disabled access has to be one of the most short sighted decisions ever, surely??

We get home, the door opens.  Joyce helps us carry everything into the house.  Eve awakes from the sofa to find Joel sitting opposite her on the other sofa.  Her face is a picture.  She almost breaks down in tears when she see's Joel..  he just gives a casual grin and chuckle, smiles at her, and twists his fringe around his finger..  what he can reach through the bandage anyway.

Eve is too nervous to give him a big tight squeeze, but gives him a kiss... I ask her if she enjoyed the cookies Joel had made for her, and ever so genuinely she said "Oh yes, I did - they were absolutely gorgeous!!" - proper grown up.  I don't want them to grow up at times like this.  I don't want them to have to experience the pain of real life..  but then again - you can't have the immense pleasure children can bring you without having some pain to go with it..  for every action there has to be a reaction and all that.

That said - Today has been a good day.  One of the best in the last two weeks.  He's home now..  two major hurdles overcome.  We're looking good.  I can't stop thinking about the boy from the next cubicle.

Thursday, 27 January 2011

Dog Day Afternoon....

Thursday...  No pictures from today.  Had so much to do - This morning, I had to take the dog to the vet for his injection...  Joel is booked in for an eye test with the opthamologist, and I'm taking the dog to the vet..... I'm waiting in the reception area of the Vet's practice and staring at the receptionist.  Not in a lecherous way..  but thinking to myself, I know that face..  and the voice.  Then it dawns on me - she worked for me when I was at US Gold about 15 years or so ago.  She didn't recognise me...  we passed pleasantries and I was called in to the vet.  I'm sure I had to make her redundant, which was a shame..  she was a good and dedicated worker...

The dog has his second vaccination and I ask the vet if his weight is ok, and explain that I've not been there for a fortnight while being in hospital with Joel so not sure if the mother-in-law and daughter have been overfeeding him...  he seems to have ballooned in 2 weeks..  1 kilo extra!  He needs a bit of dust I think.  The vet says it's fine, and that he's a puppy - overfeed a puppy and all you'll get is a pile of sick he says.  Frank, but true.

I go home and return the dog to his basket..  giving him a love and a fuss.. then realising I stink of stale dog wee...  Remembering I'm off to see Joel now, I decide to shower and change my clothes, but first I hoover that damned smoke alarm.  It went off again this morning..  3 mornings on the trot, all about the same time - between 5am and 6am..  I can't bear any more..  so I hoover the sensors, just in case it's a bit of stray dust or Harry the spider waking up for work.  Not sure if it will work...  it's mains operated, so it's not like it's a dying battery.


I get to hospital and the car park is full, so I park on the open air one.  It still won't accept £10 in one go..  so I put £8 in and leave my note on the car dashboard again..  "Machine Not accepting £10 for 24hr ticket - Joel Sheldon, Ward 10"  If I get clamped and they haven't tried at least to get in touch, I'll go spare.

It's probably good parking on the open air one today, because at least I can go and pick Eve up from school, bring her back, and use the same ticket, providing there is space on the car park...

My good idea is shattered when I reach Joel's bed and one of the nurses says "Has anyone told you about parking?"..  "er..  what about it??". There's a parking pass waiting for me at customer service.  £5 deposit and then £10 per week for parking instead of £10 per day.  Great.  I've just spent £8 on parking when there's a pass for me.  Last night, we were also told that there's a good chance Joel may (MAY) be able to come home Friday night, after his Hickman line has been inserted, but we're not sure..  He's having a Hickman Line in his chest, lumbar puncture, and CT Scan..   but the irony of the whole parking thing is just hilarious...

We've been here the best part of two weeks..  at £10 per day for parking.  They give us a 7 day parking permit for £10 (plus £5 deposit) the day before he might come home!

I'm asked to sign a form for the parking permit.  It's a 7 day pass, and if you don't renew or return the pass by the 7th day, you lose your £5 deposit.  You need the pass to get in AND OUT of the car park..  so I wonder how you get the £5 deposit back by returning the pass, and yet still be able to get out of the car park on the evening?  I guess I'll find out next Thursday.

I also wonder if we'll be able to extend it if Joel is discharged as an in-patient.  We have LOTS of appointments coming up at the hospital on an out-patient basis..  for chemo (possible 8 x 6 week courses!), physio, eye tests and general follow ups etc. so we'll still be needing to park the car...  We shall see.


Joel also has a new toy..  a Ferrari Red Wheel Chair!  In Physio this morning while I wasn't there, he was whizzing around the gym doing turns on the spot, and really took to the chair like a duck to water.  This will be his chair for the next few months now.  He loves it.  It's a shame we can't decorate it or personalise it, but it's not our property - it's on loan to us so has to be returned in the same condition.  Sadly, it's not big or strong enough to take my weight..  I was tempted to try popping a few wheelies up the corridor..  Maybe if he grows a bit due to the steroids, then he'll need a bigger chair that will fit me too...

This also means we'll get a blue badge for the car, carers allowance, and all this other stuff that's gone over our heads..  we don't feel like we're justified having it - but apparently we're entitled to it all.

The blue badge will come in handy though with the chair, as Joel is getting tired REALLY quickly..  I'm hoping he'll be able to stay awake for the Birmingham City vs Manchester City match next week when he's mascot.  They may have to drag him from the dressing room, heel's scraping and bleeding along the floor of the tunnel as he's pulled unconscious to the centre circle...  Tens of thousands of fans, Satellite TV viewers, and he's snoring on live TV... He'll be fine I'm sure.

I leave to pick Eve up from school, and call Joyce to let her know that I'm picking her up.  I ask if she'd like to come..  I'm possibly shooting Usher later at the NIA, but that's not confirmed yet..  I could really do with getting back into work mode..  I can't afford to let my clients go without pics for much longer... so I've got all my cameras packed in the car.  Joyce says that she'd like to come, so I have to pick her up from home after I've picked Eve up.  Then she drops the bombshell..  "Marion wants to come as well..  she's invited herself".  I don't mind, but as long as I'm not expected to give them a lift back..  I'm working 2 minutes away (if it comes through) and intend to go there, do the job, then get back to Joel's bedside..  I'll pay for their taxi if necessary, but I haven't seen Joel much today..

On the way to the hospital, I'm quiet.  I'm thinking so many things in a world of my own..  we get to the hospital and park up.  Marion turns to Joyce and while looking at me says "Looks like we've been sent to Coventry haven't we?".  This angers me greatly.  I've got things going through my head and she's having a sly dig at me for not talking in the car.  I had nothing to say, and didn't want to make any conversation.  My concentration on my driving wasn't as sharp as it should be anyway..  the last thing I needed was further distraction.  I'm in a bad mood now.  I've been gracious enough to give her a lift, and now she's trying to provoke me.  I have no time for it.

My uncle John is already at Joel's bedside when we arrive.  Conscious of the '2 visitors per bed' rule, I ask John if he'd like a cup of tea, and we go to the kitchen for a bit to allow Joyce and Marion to sit with Joel.  It also means I don't have to sit there and have Marion riling me thinking that she's cheering me up.

The parents kitchen is crowded.  There's a family of 4 eating a chip supper..  one person perched on a bar stool under my cupboard from which I need to retrieve a tea bag and the jar of honey..  fully aware that I booby trapped the cupboard when I last locked it (ok, not so much booby trapped, but hastily put everything back precariously balanced against the door), I ask the lady if she could excuse me just while I get some stuff out..   "Yeah, fine" she mutters..  and doesn't move.  I raise my arm to put the key in the lock which is above eye level, and she still doesn't budge.  "Excuse me please"..  and I open the door.  She shifts slightly, so gets a face full of my armpit and a bag of milky bar buttons in her chicken pie.  I doubt she'd notice she was chewing a plastic bag to be honest...  they've got chip wrappers strewn all over the place.  I make a cup of tea for me and John and we go and sit in the corridor where it's peaceful.


It turns out this family is from the child who has just been brought up to the bed next to Joel.  He's 22 months old and was run over.  He's been in ITU for 3 days and has just come round.  His visitors (and his mother) are in the parents room stuffing their faces (well, we all have to eat), but the child is left alone save for a student nurse comforting him.  He's battered and bruised, head swollen and cut, with abrasions all over the side of his face.  His eyes look like he's done ten rounds with Mike Tyson.

I hope they choke on their chips.

22 months old, and run over.  How does that happen?  Where were the parents?  Many scenarios run through ones mind..  I frequently see parents pushing prams and pushchairs while about to cross the road, they'll have their feet on the kerb and the pushchair IN the road..  with baby's face inches from speeding traffic.  Sometimes I'm tempted to blare my horn as I go past..  I don't, for fear of frightening the child, but these parents need sense drilled into them somehow..  better the blast of a horn than the side of a bus..  and I know that feeling from experience!

Perhaps they were sitting having a drink at a pub and not watching the child as it played on the car park, or straying into the road?  I suppose it's unfair of me to come to my own conclusions, but the fact that by 7pm the whole family has gone and the child is left on his own with no-one there except the nurses.  He cries out most of the night, "Momma...".  Different nurses go up and console him, and he's not wary of ANY of them..  he shows NO fear of strangers.  A sign that he's used to being passed around.  The child has just come out of ITU and the parents spend a couple of hours with him before leaving..  no one staying with him overnight.  Welcome to the NHS, your friendly babysitting service.

7.30 comes and it's home time...  It's suggested that I take the family home.  I don't want to..  I'd rather pay for a taxi than waste an hour driving home and back..  but in the end, I decide I'd rather get Eve back home quickly so I agree to give them all a lift.  Eve is very good tonight, no tears.  Joel asks for Eve.. she approaches his bedside, and he leans over and gives her such a loving hug and kiss, and pats her back..

For all their bickering, this is a beautiful scene..  a bond I've never known..  I have no brothers or sisters to compare the feeling with, but I feel a sense of pride, and love for these two children who clearly love each other - despite their occasional differences and disagreements.

Joel decides he'll come to the door to see us out and jumps into his wheelchair..  he carefully drives up the ward to the door, only stopping for a breather near the end, at which point Louise takes over..  I ask if he likes his chair..  "Yes!" comes the prompt response...

We leave and make the journey home..  I return to the hospital about 40 minutes later..  not a bad journey really.  I ask Louise if anyone has been back to see the little boy next door, who is sat there being comforted by a nurse.  Nursing staff are very disciplined when it comes to discretion, but you can see from their manner that they're disgusted with the parental 'treatment' this child receives.  The family have left for the night early..  probably so they don't miss Happy Hour.

As Joel goes to sleep, Louise and I sit there contemplating.  Louise gets quite upset and worried about tomorrow..  Joel has his op to put the Hickman line in, as well as the lumbar puncture to see if the cancer has spread, and a CT scan.  We both get worried and talk about the statistics.  We still don't know for sure if it's aggressive or standard - so not sure about that 80% or 60% five year survival rate..

I tell Louise it makes no difference to me if it's 60%, 80%, or 95% - it's that percentage that DON'T make it past five years that frightens me. Doesn't matter how good the odds are, there's still a chance.  It's a lottery in reverse.  I still fear Joel being in the 20% or 40% of the unlucky ones.

We have to be patient, and strong.. but we're fearful.  It's horrible, watching our beautiful little boy lying there so peacefully, thinking of all the dreams and aspirations WE hold for him, let alone his own, and wondering if there'll be any long term problems yet to come as a result of the treatment or the cancer itself - or even if he'll grow up into a young man.  We MUST stay positive, but I'm finding it impossible to do.  Our lives have been shattered.

When we had Eve and decided to have another child, we were blessed with a boy..  Our family was complete - one of each..  the perfect combination and an ideal age gap between them..  close enough together that they can play with each other as they grow up and not be too far apart as teenagers..  siblings, and best friends...

We never expected cancer would try and destroy that perfection.



Wednesday, 26 January 2011

Sorry seems to be the hardest word...


I hardly slept a wink that night as it was, but at 5am - all three smoke alarms in the house started blaring, waking us with a start.  Eve quivered under the bedsheets fearing she was going to burn to death.  I grabbed a coat hanger (useful in the event of a fire apparently) and rushed onto the landing, jumping like a buffoon with the coat hanger trying to hit the 'hush' button on the alarm.  It wouldn't stop it.  I ran downstairs, no smell of smoke anywhere..  I quickly checked all the downstairs room, no sign of smoke or fire, so grabbed the mop from under the stairs..  everything tumbled out into the hallway...  I'm now in my underpants..  nothing else, except for a mop.  Dancing like a dervish in the hallway trying to stop the smoke alarm from ringing.  Joyce is on the landing.  She doesn't hang around to watch...  Can't blame her.  It's not the prettiest sight.

I go back to bed..  Eve asks what the time is.. 5am I say (It's now getting on for 5.15).  5.30am, it happens again..  and 5.45am.  I wonder if Joyce is having a crafty cigarette in Eve's bedroom?


I get to the hospital and walk in the room.  Little man smiles as if nothing happened.  Louise looks at me and says "I'm sorry for last night".  I tell her I'm sorry too.  We both know that it's stress and wasn't intentional. All is forgotten.  I make her a cup of coffee and myself a cup of tea.  I get back to the room and I see Mr. Draper, Joel's headmaster sat in the room.  He said he'd visit, and Joel was really looking forward to it (I'd have dreaded it when I was his age if I knew my head teacher was visiting me...).  Mr Draper had brought some presents from the staff..  all lovingly wrapped in purple foil wrap.  Joel thought he had a huge bar of Cadbury Dairy Milk to open.

The first present was a book..  a very special book..  Mr Draper has obviously been paying attention to every little thing I've said about Joel, which I'm so grateful for..  It was a special edition "Beast Quest" book, with a lenticular image cover..  (often incorrectly described as 3D - it's more animation than 3D..  but that's by the by).  Joel's eyes were wide open..  he LOVES Beast Quest, and this was a special book he didn't have.

The next present was a good one too...  Mr. Draper wasn't sure if he'd like this one, but when he unwrapped it carefully to reveal an Official England Football Team book, it was clear he did like it - very much...

"And I've saved the biggest til last" Mr Draper said....  and handed Joel a big purple box..  "Can you guess what this is Joel?" he asked.  Joel shook it gently, hesitated, and looked at his mommy...  "Ooh, does it sound 'broken'?" she said, excitedly...

"LEGO!!!!" Joel squealed...   and we all sat with baited breath, dreading to see that he'd already got it..  Thankfully, as Joel peeled it from the wrapping, his face beamed and we knew he hadn't got this..  a lovely articulated lorry....  Mr Draper told Joel that he'd heard about how much he liked Lego, and that he thought it was a good present to also help improve his fine motor control...  Louise and I were both moved at not just the generosity, but the thought behind each present.  It really lifted our spirits.

Then Mr. Draper says he has one more thing..  it's a joke book.  Unwrapped, tatty, and dog eared - obviously a well read and well loved book...  He says "I've kept this book on my desk for a few years now Joel, and whenever I'm feeling sad or grumpy, I have a read of this to cheer me up".  Such a sweet gift.  And plenty of new material for dad too.....  Bonus.

Rebecca the physio pops her head around the door (they're very supple these physios) and asks if it's ok for Joel to do some physio in about 10 or 15 minutes.  Mr. Draper introduces himself and says he needs to be going around then anyway, but he stays and chats a bit longer.  I think Mr. Draper is very surprised at how well Joel appears, considering it's just over a week since he had the tumour removed from his brain.  This reminds us that Mr. Solanki, Joel's surgeon, had kindly arranged for copies of the 'before and after' MRI scans.  Mr. Draper is visibly shocked when he sees the size of the tumour and it's location in the cerebellum.

After a short while, Mr. Draper leaves us with warm wishes and love from the whole school.  It's very sincere and again, most humbling.  Then it's time for Joel's physio.  I'm hoping I'm not in goal again today.

This time, it's Hollie who comes to collect us for Physio...  She's just as happy and cheerful as Rebecca.  I don't think I could work with poorly kids all day and remain as happy as these physiotherapists do.. they must either be on some serious drugs, or be angels.


Where's the twister mat?

Joel pretending to be a cat...

First of all, Joel has to do some stretching and balancing exercises again..  getting into the position of a cat about to pounce, he has to lean forward and to the side to reach a ball, then hold that position for a few seconds...  with feet on the ground.. then same again with one leg in the air.  He gets bored of it quite quickly - and also very tired.  Hollie then suggests catch.  "Who would you like to play catch with Joel?  Mummy or Daddy?"

I do that 'take a step back to volunteer Louise' thing as Joel says "Daddy!!".  Great.  As if my goalkeeping skills weren't bad enough, now I have to throw and catch.  I go to kneel on the hard wooden floor and my right kneecap pops again..  it's painful..  I wince, then I remember what Joel is going through.  Hollie offers me a chair and I graciously accept it, slightly embarrassed at my pathetically low pain threshold.

Joel has to kneel on the mat, upright...  so his legs are on the floor, but his bum is off his legs..  then I throw the ball to his cupped hands.  He catches a few, misses a couple..  he has to throw the ball back to me with left hand, and right hand..

His first two attempts with his left hand go behind him..  clearly there's some signalling issues going on..  but then miraculously, his third attempt is a perfect throw, straight to me... and the fourth..  then a couple go a bit awry, but on the whole, this is amazing progress from previous throwing attempts..  I'm pleased as punch.  His left handed throws were better than some of my right handed throws!

Then we move onto hoopla!  Throwing rings over cones..  Hollie lays out three small cones and gives Joel a handful of rubber rings. They remind me of dog toys..  but less bite marks on them.

Roll up.. roll up

He fails to get any hoops over the cones..  most of them seem to go far off to the right..  Hollie and I scoop them up and he tries again.  He swings a hoop around so hard, and his arm smacks Hollie right in the throat.  She laughs..  thinking back to my earlier comment..  I reckon it must therefore be drugs.    I jest of course, but she takes it very calmly and carries on making light of it..  it looked painful though.

Again, we score nothing..  so Hollie gets a few more cones out and says "Shall we try again Joel?"  I joke with Joel as I'm helping space them out... "Shall we see if Hollie can get any hoops over the cones?"

Joel comes very close to getting one on..  but the object of course is ultimately not to score..  but to get the co-ordination back...  so as we go on, his aim gets better, and therefore, that's a win for Joel.

Getting closer!

Hollie has to go to a pre-arranged meeting, so Rebecca takes over.  Joel is given the choice.. Basketball dribbling, scooters, or pilates ball...  (well, 'big bouncy ball').  Joel says he likes the scooters, so Rebecca offers the scooters on a regular basis, providing that he does all the hard work exercises first...  Joel agrees, like a true gent.  He'd do anything for a pretty face.

Rebecca arranges cones from one end of the gym hall to the other, and gets Joel to race along by pulling with his feet..  he LOVES this..  today he's started using both legs alternately, rather than in unison..  there's still signs of the weakness on the left as he starts to drift over, but he soon reaches the cone...

Look ma.. No hands!

Look Ma - No hands!

Then he has to lie prone and pull himself along by his hands..  he likes this too.. it should come in handy when he becomes a vet and is paddling out to sea on his surfboard to give dental checks to the sharks...

Rebecca decides to race him and she gets on the bigger scooter.  Why doesn't Joel choose me to join in THIS exercise??  It looks great fun...  I can't afford a segway..  these scooters might be the next best thing. I could probably build one with an old MFI drawer cabinet and some casters from B&Q..  in fact, there's an idea to save the NHS thousands!  I bet these cost a bomb...

Rebecca goes easy on Joel.  He wins..  by a narrow margin...

I'm on top of the world!


Eventually, physio session is over and we go back to the ward.  I nearly wrote hotel room then.. we should be so lucky.  Joel is tired, tugging his hair again...  He's got to be careful when he starts his chemo, because if he's not, he'll be pulling big clumps of it out.  Nearer the time, if Joel does start to lose his hair, I'm considering having my head shaved to raise money for the Neurosurgical ward.  However, rather than donate any money to them for it to be swallowed up by admin and to be directed to other 'needy' departments - I'm going to ask them for a list of items they desperately need and will try and buy the items for them directly.  One of Louise's work colleagues does this as she raises thousands for the hospital who look after he son suffering with Cystic Fibrosis, and she was disappointed to see the money not going to as good a use as it could be..  so she started buying them what they needed without it getting misdirected.

It's not a prospect I'm looking forward to..  I've NEVER had my head shaved in my life..  closest haircut I've ever had is a grade 2 - but when you consider they don't even have enough mugs in the kitchen for parents to make tea and coffee with - before you even think about the MEDICAL equipment..  it's simple stuff like that to make the parents' stay more comfortable at a time when their lives are already at a low.

Despite being tired - Joel wants to do the Lego that Mr. Draper brought in..  we try to get him to have a nap, but no, Lego.  Lego.  He wants his Lego.  LEGO!!!!!!!

We set up his table, pop him in front of it and open bags one and two...  peace at last.. for all of 3 or 4 minutes.  The pieces are tricky..  he's tired and losing his patience.  He builds half of the cab before dismantling it, not satisfied with his progress on the current step.  Frustration sets in, and pieces of lego go across the room. I pick them up and tell him it's ok to take his time, that it's not a race.

He carries on..  I know he's not going to sleep tonight, until this model is complete.


Later that afternoon, a nurse enters the room and asks if we'd mind going back on the ward rather than the private room - they have a patient coming in who needs to be in isolation.  We have no objection - we're surprised we had that room at all to be honest, although it is with a little in-trepidation that we run the gauntlet of parents who weren't offered that room over us...

We're further down the ward..  right opposite the snorer's bed.. a Somalian immigrant family who's uncle is supervising the poorly child.  He must have been cast out of the house and told to look after his nephew, just so the rest of his family could rest..  apparently, he'd kept the ward awake for three nights with his loud snoring.  Even the nurses were giving swift kicks and nudges to the bed, but the snoring continued... louder.

Thankfully,  we are told that the child was discharged that morning..  Cool.  Now just the question with what to do with all the presents, books, DVD's, colouring stuff, washing, food, cards etc. that make up our house at the moment.


I make a few journey's to the car to fill it up with stuff from the room that Joel either won't need, or won't want over the next couple of days.  Dr. English comes along to talk to us and he's hopeful that if everything goes well with Joel's operation on Friday, Joel may be able to return home with us!  At least until Monday when we have an out-patient clinic with Mr. Ford.  I forget what his title is..  If I'm honest, I'm worried about Joel coming home so early, but in the same breath, I'm not keen on him staying on that ward..  there are a large number of children on the ward with brain infecions..  We fear that he may pick up a bug that will jeopardise his recoer.


We settle in quickly to bay 8, and Joel continues his model.. it's very nearly finished, but again he loses his patience and drops some on the floor.  It breaks, and a piece goes under the curtain of the cubicle next to us.  Well, it's an ice breaker isn't it..  Reaching your arm under the curtain is the hospital equivalent of new neighbours nipping next door to ask for a cup of sugar, or asking a stranger in the trap next to you if they have some spare loo roll.

I manage to retrieve the stray piece of lego with some dignity..  I don't think I caught the attention of anyone in the actual bay next door...  but the nurses gathered around the nurses station gave me a quizzical look.  I struggled back to my feet and held up the piece of lego like a trophy...

We manage to piece it back together and Joel finishes it off..  I'm thinking of asking if the nurses have any superglue..  these models are great, but so fragile..  I picture us leaving hospital (whenever that will be) and taking all these models intact.. getting home to find a carrier bag full of lego bricks from several different models....  "I don't rememer an Imperial Articulated Death Truck in Episode IV"


We got ourselves a convoy...

After he'd finished the Lego truck, we popped it on the side next to his bed.  I wonder if you can get a Lego "Plymouth Valiant" like the one driven by Denis Weaver in the film "Duel"...  Probably best you can't..  I don't want this truck going over the edge of the bedside unit and smashing into a million pieces.  Well, 278 pieces to be exact.

Joel can relax now..  he's happy, he's completed it.  He would not give up until he'd finished it...  That's a good sign.  He drifts off to sleep and looks fantastic... so peaceful.

I kiss Louise, and kiss little man and leave them to sleep, perchance to dream.


Tuesday, 25 January 2011

Spaghetti Bolognese or bust...

Steelhouse Lane Police StationSteelhouse Lane Police Station
viewed from the 2nd floor of Birmingham Childrens Hospital

Tuesday was awful.  On arrival at the hospital this morning, the day was grey..  but the sun was trying to burst, or rather claw, it's way through the clouds above Steelhouse Lane Police Station opposite the hospital.  It's a beautiful building..  well, looks beautiful on the outside, I wouldn't like to spend a night there.... As I came out of the lift the view above caught my eye so I took a quick snapshot.

As I write this a couple of days later, I realise the symbolic relation between the building in the photo and us, imprisoned in the hospital ward / isolation room in the hospital opposite.  
Eleven days - no trial, no jury, just a sentence.  Possible chance of parole if the chemo and radiotherapy works out..  Joel can't escape, not yet at least..  so his boredom and frustration escalates.  The fine motor control issue is causing tension and he throws things across the room at the slightest hint of difficulty.  We don't shout at him for that - we can't begin to understand how frustrating and confusing that is, to suddenly not be able to do something you've been used to for years...  but with this comes the strops - the tantrums, and the punches.


The day started off ok - Louise did some of the physio exercises we need to do with Joel every day - just simple stuff like balancing on one leg for 10 seconds, then the other leg, and high fives but making him reach up so he counterbalances his legs while sat on the edge of a chair or bed...  then Rebecca comes and collects Joel for the REAL physio session...

10 seconds - Well done Joel!


As we go to the gym, we walk the 'airport' link corridor again and Rebecca asks Joel if he thinks he's getting on an aeroplane..  Louise asks him where he'd like to fly to.  We all giggled discreetly at the response..  having no idea where it came from...  "Afghanistan" he said, matter of fact.

Rebecca asked if Joel wanted to be a soldier...  he probably wants to be a war correspondent rather than a soldier, but he gave no feasible reason.  Just "I like Afghanistan".   I think we must watch too much BBC News 24.

Come fly with me


This tires him out again, but instead of giving in and having some sleep, he fights it.  He refuses to go to sleep.  This is going to be bad news later.


Patrick comes in to check Joel's obs..  I'd been explaining to Joel earlier about the torch test in his eyes, and what they're checking for..  "The little black dot in your eye, that's called a pupil... and when it's really sunny or bright, it closes up so as not to let too much light in..."...  blah blah, you know the rest..  Well, Patrick had his torch ready and Joel was eager to have his eyes checked again.


Come tea time, the proverbial hits the fan. Dinner is taking a very long time..  We see parents walking back and forth with plates of food, and wondering why they're getting up for it themselves rather than being 'waited on' as we expect..  (Not that we expect to be waited on, but that's the protocol - food is meant to be dished out at the trolley cart and taken to each patient in turn...

Colin comes in to us and apologises immediately.  "I could tell you a white lie" he starts...  "But I won't..  I've made a mistake which I'll own up to..  I gave Joel's spaghetti bolognese to someone else".  That's it.  Joel was looking forward to his spag bol, and nothing else is going to suffice..  nothing.  Absolutely nothing.

It seems parents are getting impatient at having to wait to be served their dinner that they're taking to queuing up as soon as the food trolley appears at the top of the corridor.  Then they either change their mind about what they ordered, or ask for extras so they can have a free bite to eat as well..  (I've seen one parent ask for some fish fingers then stand there chatting to the guy while she EATS them in front of him!)


We take Joel to the food trolley and tell him he can choose whatever he wants..  there's fish fingers, beans, chips, wedges, cottage pie, lasagne, veggie burger, chicken, rice, lots of things..  Joel wants none of it and is just stropping, raising his voice and being intolerable.  A queue starts behind us..  it seems like we've joined the 'queue brigade' and are now holding up other people who can't wait to be served..  I start to get impatient as Joel is being very uncooperative....  "What about this lasagne?  That's like Spaghetti Bolognese" I say..   Louise snaps at me..  "He doesn't like Lasagne".

This is not true.  He eats it at home.  I've seen him eat it.  He likes it.  Sometimes he says he doesn't like it.  Sometimes he says he doesn't like me. Sometimes he says he hates Louise.  Not everything he says is true, all of the time.

I go back to the room, it seems my input isn't helping.  Louise tells Colin to put fish finger chips and beans on a plate, then we go back to the room. Joel refuses to eat it. It goes cold. The atmosphere in the room is even colder.  I go and warm the food up after about 15 minutes, Joel throws another tantrum, gets out of bed, and goes and stands in the corridor blocking the way, facing the wall.  We play the silent treatment, thinking he'll get bored.

I'd have played it longer had it not been for the fact that he was likely to lose his balance and fall over at any moment, or cause an accident by blocking the corridor.  I go and try to reason with him, not giving in.  I tell him, "Look Joel, it's ok if you want to strop, we're here all night anyway, so you can stand against the wall as long as you like..  but it isn't going to get you spaghetti bolognese so you're only wasting your own time..  but, if you want to carry on standing against the wall, let me move you round to this one so you won't cause an accident..  ", and I pick him up and move him around the corner out of harms way.

Then he sits on the floor, head facing forward leaning against the wall.  I realise he's still in a precarious place if someone comes around the corner and doesn't look where they're going.

Louise goes out to get him and bring him back - this doesn't help his strop, but eventually, after about 40 minutes of shouting and concerned looks from parents and nurses alike, he starts to eat the fish finger, chips and beans.

Then he settles back to watch a film on Louise's MacBook while Louise gets in the shower.  When Louise emerges, Joel proclaims "You promised me I could play angry birds when I ate my tea....".  I made no such promise..  Louise however did..  and I reminded him that he was in the middle of watching a film, but if mommy agreed that, then mommy would sort it out as soon as she could.  Louise loaded Angry Birds and he started to play.  I made a cup of tea and sat in the armchair..

I won't go into too many  details, but the pressure of the day go so much and something had to give.  Louise and I had an argument, about something so trivial as the camp bed.  I kissed Joel goodnight, and left, angry.

I sat in the car for nearly an hour, feeling guilty for leaving, feeling angry at Louise for flaring up, and feeling even more angry at myself for not realising this was not Louise and I arguing, but succumbing to the tension that had been building up over the 11 days, especially today with the tantrumes, and having the sense to see it, and say "Look, lets stop, take a step backward and calm down"

At least next time, I'll have something to think about and hopefully be able to stop it blowing out of all proportion.


I don't sleep well Tuesday night.  I don't imagine Louise did either.


Monday, 24 January 2011

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.

Get Well Soon

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.


Sunday, 23 January 2011

Pinch Punch...

Siblings at play...Joel not concentrating hard enough..  Notice the tongue is only slightly protruded...


I'd set my alarm to get up this morning.  My alarm went off just before 8am, followed by a text message from Louise - "Where's the key?".

Oh rats....  I'd taken the key for the food cupboard in the parents room last night, so now Louise couldn't have any breakfast because her All-Bran, bread, pop-tarts etc were in the cupboard, locked away for safety. It was in the pocket of my jeans by the side of my bed, in Walsall. I texted back...  suggesting pizza, sausage rolls, Petits Filous or Ginsters Chicken & Mushroom slice that I'd left in the fridge from the day before.  The response was expected, but if celebrities can eat Kangaroo anus and Witchita Grubs in the Australian Outback, I don't think some 1 day old pizza or a Ginsters slice is too bad for breakfast.  Apparently, none of that is as good as All-Bran. I'd have thought it would have pretty much the same effect, but there you go.  I told her I'd be there shortly.  Truth was, her mom and aunty wanted to come with us to the hospital and I couldn't pick Aunty Marion up until 9am.... and I was STILL late picking her up, and STILL forgot to take more yoghurts and milk from our fridge.

At least I didn't forget the Monsters Inc. DVD.

...but did forget Cars.  Bad daddy, bad, bad daddy.


Today, I joined the elite club.. Louise has been a member for a few days, my uncle John has been a member since last Sunday.... but today, I received my induction.  A punch, square in the face, from Joel.

While trying to make todays Lego model (Lego Creator, model 5868 if you want to know), Joel became quite agitated.  His fine motor control was playing havoc again and he was really struggling with putting some of the smaller pieces together.  I didn't want to help unless he asked me to, but I could see he was beginning to get angry with himself.  It must be infuriating for him, and confusing - he's done countless Lego models.. I imagine he wonders why he struggles now..

Eventually, I asked if he would like some help, and he muttered 'yes'.  I sat close to him, and he still became more agitated.  Then he threw the piece he was working on across the room.  I sat there and said "That's not very nice is it?" and then WHACK!  Right in the kisser.  I was stunned..  he seems to be getting angrier and angrier as the dosage of his medication is reduced.  I sat there, he sat there.. then he gave me a hug and I told him that I loved him, but that was not acceptable behaviour.  He's lashed out a few times today..  I think he's hit Louise at least 3 times, and flung several items across the room.

It's ironic that his fine motor control is preventing him from putting tiny lego bricks together, but he can still play iPod games and manage to accurately land a decent punch.

One of Louise's friends visited just before lunch..  She'd phoned a few days ago and managed to get through to the ward.. she didn't know where we were except for the Birmingham Childrens Hospital, but still endeavoured to locate us as we'd been switching our mobiles off when in the hospital.  She asked what Joel was into.. Toy Story?  Lego? Ben 10? Power Rangers?  Check to all of those.  Today, she arrived..  with goodies.

It's really moving when friends go to so much trouble to get in touch in times of need. She didn't have to buy Joel any presents, or go to so much trouble to find us and speak to us to offer words of comfort...  but she did. That's what she's like.. always been caring, and probably why she makes a great foster mum.


I think Louise feels a little embarrassed when Joel hits her..  I know I do...  while I know I had little authoritative power over Joel before he was diagnosed (my instructions would always fall on deaf ears), it is still embarrassing to be smacked in the face by him.  He didn't ever do this before, and I fear that visitors who witness this might think that it's normal behaviour for Joel...  That's what I'm embarrassed about.  I keep finding myself excusing his behaviour and blaming it on the steroids and pain killers..  which the registrar did say to expect..  I just wonder whether our guests believe us...  and I wonder if it will carry on after recovery...  How do you control it?  We can't punish him for it as it's the medication affecting him, but he's going to realise that he can get away with it and still get a hug and love after he's hit us...  how long before he crosses that line of doing it because of the medication, and it becoming part of his normal behaviour?  Louise doesn't agree..  I just worry about it.  I don't know why I doubt her. She know's her stuff.  I just worry too much.


Little Fat Farmer

Yesterday, we lost the little fat farmer from Joel's Combine Harvester that he'd built...  I thought it might be in one of the oxygen supply tubes or perhaps in Joel's nasal cavity, but thankfully, he was seeking refuge behind the radiator.  Louise found him in the night... I don't know if he was cowering there for long, but after a good dusting off, he was good as new - and sat in the cab of his harvester..  His coffee cup is missing, but at least that will reduce the risk of agricultural accidents and further burden on the NHS resources.

Would like to meet - short, blocky, level headed lady with gsoh



By 4pm, Joyce and Marion were ready to go home.  Eve started crying..  she hates leaving us - I think she just hates leaving her mom, but I say that I'll drive them home. Saves them paying £15-£18 for a taxi, and since it's Sunday, I don't have to worry about paying another £10 for parking if I come back.

Last night, I ordered them a taxi from the same firm who charged £18..  This time, the driver had a tom-tom and got them home in no-time - using the M6 as expected.  He charged them £15.  So I was right when I thought it would be less than £16 when I queried it the other night.  I have no idea why I'm worrying about a trivial thing like that - but I hate being ripped off, and I hate seeing my elderly relatives getting ripped off too.

Anyway, I almost get home and realise I need to fill up with petrol before I head back to the hospital, so I pop to the petrol station before dropping everyone off..  £66.87 to fill the tank.  It cost £45 to fill up when I had that car about 3 or 4 years ago.

I get home, dropping Eve and Joyce off..  I pop in to the house and pick up some more yoghurts for Joel...  Then I joke with Joyce that it will be £14.50 for the lift home.  She's still refusing to accept any money off me for the taxi's from previous journey's home..  It's not fair for her to have to pay the taxi fares especially when she's looking after Eve and staying at our house while we go through this.  But refuse she does...  I'll pay her back somehow.  Have no idea how..  she'll only return it as something for the kids anyway, but I would really like her to spoil herself for a change... after everything she does the rest of the time as well!


I got my new shoes on...Joel walks with us to the exit of the hospital


I drive back to the hospital and park in the same street as before.  It's quite cold out, but luckily not too far to walk.  Joel seems to have become a lot calmer by the time I return...  maybe it's visitors as well that is making his behaviour the way it is?  He's very loving now, very calm..  then he starts getting really antsy again.  He's becoming very argumentative, raising his voice, demanding things, and being silly..  not in a funny way, but very annoying and naughty.  We try to ignore it...  it's becoming more and more difficult to ignore.  I'm pretty sure people on the ward can hear through these walls as Joel is shouting and throwing things around.

I think he may be having a sugar rush...  visitors keep bringing sweets.  He wants sweets.  He doesn't normally eat many sweets.  He's craving sweets instead of meals now...  and to some extent, we're giving in quite a lot of the time..  must remember not to spoil him so much..  otherwise it's going to do him no good at all when he comes home.. He is definitely having too much sugar..  Nesquik Milkshakes, sweets, puddings - and that's just the hospital food, before you even get to the treats the visitors are spoiling him with, and we're allowing..  That has to change come tomorrow.

It's difficult though, not to spoil him, with what he's going through.

Perhaps Colin has the right idea.  He never did bring us that Kit-Kat.



It's now 8:45 and Joel is still wide awake and being very naughty.  Louise has just gone to give him a kiss goodnight again, and he's whacked her right on the nose.  He refuses to apologise or say why he did it.  This upsets me greatly..  IS he aware of what he's doing?  Does he regret it?  I'm sure he doesn't mean to do it...  but I hope it doesn't last long.