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.
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.
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.
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