He's lost his hair. Cancer the worst hairdresser.

We knew it would happen, we were told by the doctors.
And now it has happened.
His once mane of strawberry blond hair has become  a gossamer like film covering his white head.
And he's more tired too. This morning Lucas had his sixth radiotherapy treatment.
Peter and I weren't there, we were travelling up on the train it was left to his mum Eileen to accompany him down to the bowels of the hospital where the staff are doing everything possible to save our young man.

Peter and I arrived just as Lucas was coming around from the anaesthetic. He blinked and smiled then blinked and sighed. Saying he was tired.
No sooner had we dispensed of our winter coats when the catering staff arrived with breakfast and lunch.
No problem for Lucas.
He shuffled into position, bleary but determined. Food, after all, is  his passion. After asking for  his sausage to be sliced up he dived into the cooked breakfast with partial gusto.
Then lunch....beef casserole with dumplings and veggies.
 No-one could face pud after that. Could they?
Yes. Lucas could and did. Chocolate pudding and custard.

After catching up with the weekend news Eileen left and Peter, Lucas and I fought our way through the London crowds to reach Sainsburys.
Lucas had got dressed after his food and donning his new hat and coat demanded to be taken out.
What do you do? Say no?
No you steel yourself and go with Lucas's flow.

Strolling around Sainsburys we could see that Lucas wasn't really with us. He didn't talk much.  Not demanding everything on the shelves. He was feeling the effects from a week of treatment. And as I struggled with the self service check out Lucas kept silent. I could only think of one thing to say as we stepped out and into the rain.
"Want ice cream?
And so withing a few minutes we three stood in McDonalds. Lucas and I eating vanilla ice cream and dad Peter searching his innards for light in this darkest of places...

Outside sat a homeless man. A grubby blanket tucked under  his chin gazing hopefully at passers by.
his knees drawn up.... and as usual Pete popped into the shop next door and bought the guy a drink.
An Oasis. The guy looked stunned. And after thanking Pete, he asked US if we were ok. If our boy was going to be alright.
A tender uplifting moment.

And Lucas is now asleep and Pete too is trying to sleep.
I've been shopping online.
As if three pairs of earrings will make cancer disappear.

The Sunday Quiet

We are taking it easy today.
Before returning to the hospital to see Lucas.
I've just spoken with him on the phone and as always he sounded cheery and without a care in the world. It is us, his family that take care of the worrying.
How we worry about that little man.
Tomorrow begins the second week of radiotherapy. We now know what to expect. Not only from the treatment but from the cascade of helpers and therapists who tiptoe into his room offering all kinds of fun things to do.
Sometimes it's ok to do nothing.
Just be.
Lucas isn't my child but that doesn't stop me waving my arms about trying to protect him from people who don't know him or how he ticks.
You don't have to be a mother to care.


On a lighter less volatile note I indulged in a bit of baking this morning. A yumsome 8inch square Gingerbread is now sitting on a cooling rack...Felt so good doing something I love.
One must never neglect a hobby.

We are looking forward to seeing Lucas tomorrrow and spending the following three days with him. I really like this kid and the gift he's given me.
Thanks Superstar.

All the way from Essex

.......came Grandma Florence and Grandad Bill.
Lucas was overjoyed and over the moon by their sudden appearance .
"Hows your back Grandma?"
As Grandma eased into the chair.
"Oh it's fine Lucas" she fibbed
Grandad didn't say much and what he did say was mostly about politics and his time in the army.
And so after a couple of cups of tea the octegenarians kissed their grandson and made thier tottery way back home.

Lucas had his third round of Radiotherapy this morning. A more accomodating young patient you wouldn't find. I assure you. Gave up his right arm to the anaesthetist whilst chatting merrily about about an octopus.
And then, as Peter and I watched, he fell asleep going to heaven knows where.

And that was when Peter suggested we go up to the ground floor for a nice hot cup of tea in the cafeteria. The Radiotherapy room is in the basement, in the bowels of the hospital. Walls painted in watercolours of misty blue, limp yellow and muted apple green. An occasional drawing on the wall of a rainbow coloured fish adds to the sublime restfullness of the place.

Tea was good.
And so was the talk.
How, we both wondered, how were we, as a family, getting through this. Wading through layers of many kinds of awfulness. We didn't come up with an answer. It was difficult on account of the buzzing traffic, the endless seamless lines of traffic sliding along the Euston road. So we locked hands and said nothing.

I had a phonecall earlier from a mate of mine. Iris Shiner. She sounded out of breath.
"You ok?"
" Oh God May" she said
"My chest is tight this day"
Iris had a tendency to talk a little weird. But I liked her.
"Hows the boy?"
"Oh Lucas is fine" I replied gazing out of his window into the spire of the long distant church
"He's sleeping and eating and farting all day long"
"So no change there then" laughed Iris

No I thought, no change there.
And a collection, a mishmash of memories nuked inside my head.
Lucas demolishing two quarterpounder. Lucas taking to the bed. Lucas's exhaust system making me lurch towards the can of Rose and Vanilla air freshener .
Aaah bless him....

.........from notebook to blog......a vast space in which to say what's happening in the Cockle tent.

Today my step-son Lucas screamed for me to climb aboard his hospital bed as his second radiotherapy loomed. I climbed. Sliding up against his warm body we locked arms. And as  Dad Peter and Chinniah the nurse talked upbeat nonsense the two porters glided Lucas and I down to the basement.
Treatment number two completed.

He's sleeping now and I'm watching as his pursed dry pink lips blow and suck air out and in to his body. Such a charming, funny and life affirming young man whose constant colourful antics leave everyone in a state of awe. Walking with a painfully wide gait, (so typical of Downs Syndrome) hearing not good, partially sighted due to brain tumours pressing on his optical nerve and a slow cognitive process all kinds of sick stuff and still he can't stop loving.

He loves me even though I'm old. But according to Lucas I'm 'new'.I'm 63. And that's one of the reasons I dig him. Not the only reason. He uses furniture polish like fly killer, I mean it goes everywhere. See a spec of dust? Kill it.


Lucas is 19, Downs Syndrome and lives with his father Peter, his mother Eileen, a cat called Len and me, May, his step mother.
We live in a house which we call The Tent. It's falling down. It's walls are as thin as well rolled out pasta dough and raindrops fall onto the kitchens worktops. An abundence of stains.

He's having his obs done now by nurse Ally, and as she slots the thermometer into his armpit he yells saying 'it's too funny'. And wheres my fish and chips? And whens it daytime?
As his head resembles a fresh newly laid egg and his skin feels as rough as sandpaper Lucas is the joker.
The essential turn on the cancer ward.