Thursday, September 26, 2013

Vroom with a view

Car Craft are asking people to take pictures from the car of lovely views you enjoy when out for a drive.

I'm submitting this photo as there are so many 'hidden gems' in Central London that you can see from the car if you look hard enough. I think this photo should win as you can see it from the main road yet many don't spot it.

Monday, September 23, 2013

Going for gold

Going for gold

I've not been in a shop for a long time but I bet if I went into Asda this week there would be all sorts of items from PJ's to cakes, emblazoned with pink ribbons for breast cancer research.

I think the awareness, the fundraising and gradual removing of the stigma is a great thing but I bet as you look around Asda you will struggle to see gold.

October is pink - breast cancer research, a great cause.
September is (or should be) gold -childhood cancer research, also a great cause

I bet you wouldn't see many gold things and yet there needs to be more awareness so cases can be spotted quickly, in many cases childhood cancer isn't diagnosed until its stage 4 (the worst) as symptoms were written off as a 'virus', 'constipation' or 'problems at school'.

Here's a few gold facts for you
-1700 children in the Uk will be diagnosed with cancer in 2013
-3 in every 10 will die
-those who survive face a life time of difficulties, risk of relapse and risk of developing secondary cancers caused by treatment
-Some childhood cancer diagnoses carry a 0% chance of survival
-Many of these children will go through years of treatment and still die.

Lastly but not least, less than 2% of funding given to Cancer Research is given to research childhood cancers.

No one thinks it will happen to them, none of the hundreds of families I've known expected to become an 'oncology parent' until it happened.

So I'm turning my nails GOLD, not just for those who have fought the big battle and won or who fought and passed away but I'm going gold for those 1700 UK children diagnosed this year and the 1700 diagnosed the year later.

Are you child cancer aware?

Sunday, September 15, 2013


I was looking for an old poem I had written years ago and instead stumbled across this which was from last year. Some symptoms of severe M.E are hard to describe let alone understand. I've not edited it or anything and decided to leave it how it was originally.

Heart thumping, beating far too fast to count
Sensation of slow rotating in your head like an old carousel
Jerks hitting your limp body with the impact of lightening bolts
Spasms rippling up and down legs like waves bobbing on the open sea
An oblivion is opening, you start to descend

Oblivion, nothing, darkness

A moment of clarity returns, fleeting like a spark in the night
Heart slower but poison courses through veins
Light sequences dance over your eyes like a firework display
Awareness of limbs grows, odd positions which you can't change
How long was I out for?

My mind returns

Questions start emerging, where am I?
What time and day is it, early or late?
Is the oblivion closing or waiting for my next decent?
Sudden thirst, could I manage a sip of water?
The oblivion is opening, you start to descend.

It's going to be a long night

Tuesday, September 3, 2013

A beautiful small world- open letter

I'm still in hospital and made some bunting both for myself and for another patient. We are all in our own rooms and isolated from our 'neighbours'. Until now we have been able to decorate our rooms however we like, for many long term patients it means sticking things on the wall with blutac or hanging a picture of their choice on the wall. For me, I peg cards people kindly send me onto my curtains. It brings comfort and is something nice to look at.

My friend Jessica is being admitted, Jessica spent a long time in here (years) and had the most amazing room with a HUGE Johnny Depp, paintings which she did herself and lots of stars going up a wall. Stars are her thing of comfort, they give her hope and strength. I got some star lights and a little chain with stars on (meant for a Christmas tree). She was going to arrive to a room with stars but that has been banned, instead she will be admitted to a clinical looking room.

I sometimes write letters or things to people as a form of therapy, I won't send it and the last thing I need is to get an argumentative or difficult reputation over a few triangles of paper so instead I will just leave it as an open letter, never to be seen by those involved but off my chest!

What have you seen today?

You woke up in your bedroom, bleary eyed until things came into focus. You probably walked to the kitchen, the bathroom and passed through other rooms, you opened the curtains and saw today it is cloudy, there's a slight mist and the grass is damp, a bird flies past the window as your looking out. Maybe you see your loved ones and pets.

You rush off to work, getting in your car and traveling a distance, there are other motorists, you pass houses and shops, pedestrians- the old man walking his dog and the young child off to school, you drive past trees, grass, big buildings, flowers and cafes.

Once at work you greet colleagues, grab paperwork, take the stairs or lift and start your working day, after your shift you do all that you did in the morning but in reverse.

What have I seen today?

Today is a good day as a result I have seen 8 walls, that's 4 more than I have seen in the past and indeed 4 more than many of other ill people get to see. I have a window but can't look out, is the sky blue today or is it cloudy? Are flowers in bloom or have the leaves on the trees started to turn to shades of amber? I simply don't know. My phone vibrates, a text from my loved ones, we try to have a conversation but give up as the signal is too poor. I'm greeted by staff who are dear to me but I don't see my parents. I wheel into the bathroom, a different 4 walls which is nice but no hint of the outside world, I still don't know what colour the sky is today. Back in bed I lay on my right side, even in the dim light I can make out the butterfly pattern on my wall, butterflies are my sign of hope, at home I have them dotted all around my room. I dream of the day I break out of my chrysalis. It's tiring keeping my eyes open so I spend most of the time with them closed, still facing the wall I know the picture is like the stars, 'they are there even when you can't see them'. In the afternoon I lay on my other side, from here I can see the cards on my wall, a connection to the outside world, a connection to friends. I look at the picture a little boy drew me and smile while remembering the great day I once spent with him. I look at a card from my best friend and think of her, hopefully we will manage to talk in the next couple of days. Next I see a card from Tori, its a picture she has taken, I think of all those years she spent bedbound and completely paralysed,  I love how she is now able to take pictures outside of the house. Again I close my eyes.

Later symptoms hit me really hard, it feels unbearable to be inside my own body, I lock my eyes on a hanging shimmery star and focus hard, willing my mind to escape reality and it helps a bit.

The world is a beautiful place, for those of us though who can't be out there we have to live in the world of one room and try our best to make this small confining world a beautiful place we are happy to be in.