Friday 21 January 2011

It's looking like a beautiful day...

"What a big cookie you have" said the nurse.
"Yes" replied Joel, "...and I'm only 6!"

 

Great day.  So pleased.

Dropped Eve off at school.. we had a little chat in the car and I told her how much we love her, how so special she is - and that although she's missing mommy and daddy and Joel, we're all missing her too - especially Joel.

She seemed fine, but still a little withdrawn. That'll change tomorrow after mommy has promised to take her girly shopping in the Bullring - just the two of them...

 

On Fridays, I usually visit Starbucks in Walsall with a few of the other parents..  well - it started out as a "Dad's Coffee Morning"..  I thought if moms could stand and gossip on the street corner, us blokes could do it with a bit more sophistication and finesse (ahem..)..  I say it started out as a dads morning.. it's slowly been infiltrated by moms as well, so now it's just coffee morning and us dads are beginning to be the outsiders....

I didn't intend to go today, but all week I've been driving to the hospital in rush hour, and it's taken me an hour to get what is only about 9 miles, if that..  only to get to the hospital to find the closest carpark full, and after I've parked at the open air carpark up the street and walked down to the entrance, there are spaces..  so today I thought 'sod it'..  and went for coffee with one of the dads.

After a 40 minute break in Starbucks (Walsall, for friendly service and great coffee..  ;) ;)) I made the usual journey to Birmingham.  I used to work in Birmingham and hated the journey then..  with the circumstances for the journey as they are now, I hate it even more..

The journey took me half as long, so I didn't get there much later than I normally have been anyway..  amazing how that rush hour traffic can slow you down so much..  but I still couldn't park on the closest car park.

The ticket machine is STILL not repaired on the open-air carpark, so another day risking the clampers it is...

 

I took Joel a giant milk chocolate cookie from Starbucks..  I had my usual '2 pump caramel latte' - but today I lived life on the edge..  I went for 3 pumps instead of my usual 2...  the normal dosage is 4 pumps for a medium (grande or whatever they call it these days..)  but I find that too sweet..  
When I got to the ward, I found Joel's bay empty again..  panic came over me..  a few times this week I've been panicked by the lack of bed or even just lack of Louise and Joel in the bay..  but today, the bed was there, freshly made, but no possessions... nothing..  that made me panic more than usual..   Then the lady in the next bay pointed just up the ward a little bit..  I'd walked past the first bay on the right and missed my family..  
Well, there was a gaggle of doctors around the bed... (what is the collective term for doctors??  I bet it's something sinister like murder..  but that's for crows...)...   Again, I panicked..

The consultant Mr Solanki was sat on the bed next to Louise. Joel was sat upright in the armchair playing Angry Birds on his iPod..  I came in carrying 3 bags of shopping.  So uncouth.

 

Good to see you Dad...

 

Mr Solanki was talking about the operation, and the benchmarks for a 'successful' resection of the tumour.  If I remember correctly, he said the cut off was 1.5 cubic centimetres (may have been millimetres) of any mass before a repeat of surgery would be considered..  anything below that is classed as total resection..  Joel is left with 0.9 - or 0.4 - either way, Mr Solanki was very pleased with the outcome, and Louise and I are eternally grateful to him.  How can you repay someone like this?

 

It turns out, the bay Joel was in was needed for another patient being transferred from ITU..  As it was right opposite the nurses station, so they needed to keep a close eye on her..  a girl with meningitis. They moved Joel to the corner bay, which was nice and peaceful.  Unfortunately, one of the nurses had asked Louise if she'd mind moving, and she'd replied that it would be great as it was very noisy there...

Parents from both bays next to Joel took that to mean that she was p'd off with them for making too much noise..  well, one of them was to be fair..  He'd apparently been suffering from fits, and the bay next to Joel was kitted out with cameras and computers to monitor the patient 24 hours a day..  the boy was wired up to a computer next to the bed which beeped, whirred, and pinged every time the boy flinched (and he's playing a boxing game on his PSP for about 18 hours a day so he's flinching quite a bit...) and last night they decided to do a sleep deprivation study on him..  so they kept him awake..  and at 4am, his TV was still on, blaring right next to Louise's ear as she slept.. (how much were those 'soundproof' curtains on BBC's Casualty again??)

Louise heard the familiar 'Ding Ding' (Seconds out!) from his PSP while the TV carried on in her ear..  then the boys mom said "you're not even watching that!" after it had been on for hours keeping Louise awake.

At 6am, one of the nurses came to his bay and said "You'll have to turn that TV down a little bit, it's a bit loud". Where were you at 4am love?

 

Anyway..  while making tea, the mom asked me if they had been making too much noise for us to 'request' moving to another bed..  I lied and said no..  but that the nurses station was very loud with talking and phones and door buzzers etc..  The fact was, yes, they were quite loud, but we hadn't requested a bed change at all..  they asked if we'd mind giving that bay up for another patient..  it just so happened it was a blessing in disguise.

So Louise had packed all the belongings to move to a nice corner bed which was fairly peaceful...  I went to unpack the shopping..  I think I may have bought a bit too much..  our storage unit in the kitchen overfloweth..  pop tarts and tomato soup (with a hint of basil no less) falling out everywhere...
I got back to Joel's bed and a nurse asked if we'd like one of the private rooms with en suite facilities..  would we?? hell yes!  That had just been vacated and it was going spare, so they offered it us..  the other patients must think the sun shines out of our..  well, Joel's at least..  
We've been very nice with the staff there, never asked anything of them, never been misreable to them, had a laugh and helped them as much as we can. We value their work rather than expect them to be at our beck and call..  and I guess it also helps that Joel has always been so nice to them while they try to do their tests and observations on him...  Plus, as I've just remembered, he's the only one on the ward who has just had a brain tumour removed..    There's me thinking it's karma.

So we have our own room, if only for a few days..  We'll love it while we have it, but of course, if someone more deserving needs it, we're only too glad to give it up for them. En-suite too..  The only thing missing is Molten-Brown shampoo's and personal hygiene kits in the bathroom..  Joel is excited to have his own toilet..  but during his physio, we'll still try and walk him to the bathroom at the far end of the ward for a bit..

We've had a couple of 'looks' from the other parents....  they shouldn't be jealous. The room has no TV..  We don't mind - Joel didn't have it on much anyway post-op, and he's too interested in the CBBC website to watch the programs...  
It's sad that there is some animosity in the air because of the room..  the fact is, I thought the ward was too noisy for someone who has just had brain surgery anyway.. there were visitors kids running up and down the ward all day and parents ignoring the nurses requests to keep them under control..  Joel must be in extreme pain with the pressure in his brain still raised, and getting high with all the stress levels due to noise around him...

Tonight, in his own room, he fell sound asleep at about 6.30pm and stayed like it for about 90 minutes. He'd have had about 15 minutes sleep in that time out on the ward, with broken bits of nap in that time...

 

Who is your favourite team Joel?

Earlier in the morning, Mr. English came to visit us and said Joel is not, so far, in the highest 'aggressive' risk group..  I felt myself breath a sigh of relief.  He was very pleased with the progress of Joel, and with the outlook for the future.  I was ecstatic!!  I haven't felt  so much relief in the last week as when I heard the words from the oncologist.  Joel still needs the chemo and radiotherapy, but at least there's a higher 5 year survival rate for the group he's in.  #FTW!

Better and better, every day, and in every way...

 

Then he asked "Has anyone spoken to you about the 'H' word".  Oh dear god..  "he's going into a Hospice???"

He actually meant home, and hinted that Joel may be ready to start thinking about returning home soon..  it sounds a bit early to us, considering he's still got a big wound on the back of his skull, still needs physio, and has various tests booked for next week - but I'm sure they know what they're talking about and the tests could probably be done in out-patients.

Then he asked Joel if he liked football..  without looking up, Joel carried on playing Angry Birds (yes, he likes that game!) and said yes.  Mr English asked who is his favourite team.. "Liverpool" came the reply.

I'd planned to buy a couple of tickets for the Wolves V Liverpool match on Saturday - Joel loves Torres, but just before Christmas, he said he didn't want to go to the match..  Never mind... Mr English said that he had a friend who wondered if Joel would like to be a mascot for Birmingham City at their match against Manchester City on Feb 2nd..  "Yes PLEASE!" Joel said.

Joel is so excited.. the chance to be on TV walking Birmingham City FC out onto the pitch..  I hope he doesn't tell them he supports Liverpool.

 


Sex, Drugs, and Chicken RollsSats and Drugs and Chicken Rolls


Lunchtime comes..  chicken roll and ready salted crisps..  Yummy.  He's got a great appetite, and is full of smiles again.  I'm a happy bunny.  I think Joel knows it too....

 

After about the 4th milkshake (Strawberry Nesquik for those interested), one of the nurses knocked on the door and said they'd had a delivery for Joel..  two HUGE boxes...  friends had bought a teddy bear in a basket, with a bandage just like Joel's..  he loved it - and cuddled it all afternoon.

The other box must have measured 2.5' cubed... but was light as a feather..  "It's not a strip-o-gram then"..  I thought. Louise opened it and out popped a lot of helium filled foil balloons and confetti..  AND a tube of Cadbury's Mini Eggs..    

We've just had Christmas - they're already selling easter eggs??

Everyone came to see Joel's balloons...  Among them, a cheeky little monkey with a good message...

From one cheeky monkey to another...

So today on a scale of 1-10 - I'd rate this as a 10.5.  I hope tomorrow is at least as good as today, if not better.  We're both feeling more positive about the future..  myself considerably more positive than I had been.

It's looking like a beautiful day.

3 comments:

  1. Keep smiling Joel. Thinking of you all.

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  2. what an honest account of a difficult time, Louise you must be running on adrenaline, Joel you are amazing and that smile is the best I have ever seen, you really are a great family xx

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  3. As a parent my heart goes out to you.
    .my daughter was diagnosed with thyroid cancer 5 years ago, ( she is 29 now) you have the not knowing days..
    but have hope it will get better :)
    She got married and has a little baby boy (was told she would have a child)he is so cute he is 9months...

    There is light at the end of the tunnel..

    ReplyDelete