Hugh died at 19 from Ewing's Sarcoma. So far there is no cure and very few survive.

I am here to raise awareness so if unfortunately you do have it at least you get decent pain meds.

It is often misdiagnosed as a Sports Injury or Growing Pains - most GPs will never have seen a case - which is why every year I do my best to raise awareness. If a young person -12 to 26 - has a 'Sports Injury' or 'Growing Pains' that won't go away within the time you think it should and the pain just gets worse, get it checked out and don't take no for an answer.

Because it is so rare it gets very little funding which is why I support the BCRT.

I've been attending open mics with my orange hair and bombarding audiences with this piece of doggerel. On the whole it seems to work and people are very kind. And generous.

If the Pain Stays and Won't Go Away

Just Ask

(after Banjo Paterson. A Devon Bush Poem)

You may have clocked I’ve changed my hair

not natural white, or bottled fair

but glowing orange! It’s quite bright.

There is no missing me at night.

There is a story – but you’ve guessed

It’s written on my orange chest.

Awareness Month! A week’s no good.

For hard bone cancers we sweat blood!

I know that’s so, for I am one

who lost a loved and precious son.

His name was Hugh. He was 16.

He played - a bit - in the rugby team.

We thought he had a strain – boys do

you know – we’ve all been through

the breaks and bashes of our kids

as they find life, and crash and skid.

The Year was new when he first felt pain.

His shoulder hurt – but then again

No one seemed quite to work it out

and he wasn’t one to scream and shout.

It took till late September then

he had his shoulder X-rayed, when

suddenly the blessed NHS

took him on – he was a mess.

They did their best, and so did he.

At one point they thought that he was free.

But this one’s a bugger, very rare

So funding doesn’t get much share.

And so support BCRT

(Bone Cancer Research Trust to you and me)

I join them in their daft campaigns.

To raise Awareness – My locks are flames.

Dress Orange for a month they said.

Just Dress? Not I. I'm going Red.

So that is why you see me here

With my somewhat clown-like hair.

But hey, the dye will soon wash out.

It’s for the Living that I SHOUT.

And then there's this one ...

I have been persuaded that it's not totally bad taste to write of a mother and 16 year old having to attend the Sperm collection unit at the hospital prior to chemo.

So here it is...

Frozen (but not forever) in the Ocean Suite

He needed to make a deposit

before the chemo killed

his opportunities.

Mother and son traipse in

all six foot two of him

towering his sixteen year old self

over her feigned confidence.

She waits, doesn’t look

at the magazines

while he follows the man

in the white coat,

plastic container in hand.

Kerfuffle. The orderly goes

to the supply cupboard, finds another,

comes back, grinning.

The boy, pink cheeked,

strides beside her to the carpark.

"I didn’t know it was allowed" he says

"Compulsory" she replies.

He heaves a sigh, slyly mutters,

"It was OK the second time, once

I got the top off the bottle."

While other major cancer charities often overlook bone cancer, the Bone Cancer Research Trust is the leading UK charity funding research into this brutal disease – thanks to the generosity of its supporters.

With continued investment, they’ll find new treatments and, one day, a cure for all. Until then, they’re here for everyone affected, offering support, trusted information, and hope.