Thursday, 28 July 2016

Summer 2016

Currently we are in a tow truck being towed home having had a lovely 10 day break in Anglesey. Our car Engine caught fire, thus stopped us in our tracks to get home. Luckily we managed to put it out with water and juice we had before the fire service arrived.
We were very lucky it didn't take hold and burn the whole car. Such is life and adds to the adventure!

We had a lovely holiday. Beautiful beaches, a really lovely part of the world. We took our bikes and managed a few bike rides, great cycle tracks and flat!
Holidays are lovely, but away from the hustle and bustle of life it can give time to think that I don't want. We are so aware we are a 3, when buying tickets to get in places to unloading the bikes from the car.
I have played back in my mind the months and weeks before Harry died. Now 2.5 years on, it still feels like yesterday, but I can understand and process what happened differently. Though i still feel aggrieved at the huge effort I had to go through to get a basic care package to support Harry and our family and the disjointed service provision. What I do know is that I still have ghosts that haunt me.
The end of the summer school term felt tough. Callum was leaving year 1, the last year Harry ever entered at school. What happens next for callum is new territory and nothing can relate to what Harry did. It is a case of crossing over the road to the other side and see what is next, but it has felt a big leap emotionally.

September is childhood cancer awareness month. I have been trying  to promote awareness and have been getting local councillors on board with the help of a friend.
I have given talks to a local council meeting and have spoken at a children's sub group, where I met someone else from public health and through his links with G.P. practices, 37 practices have taken the childhood cancer awareness cards I have from the charity 'be childhood cancer aware' and will be displaying them.
The aim is to get the signs and symptoms out there and alongside those displayed for meningitis and septacemia.
Gold is the colour associated with childhood cancer and the 'glow gold campaign' which I am involved with via a Facebook group of oncology parents from the whole of the UK, have been contacting buildings to light up gold from dawn until dusk on 1 st September. So far 160 buildings are joining in throughout the UK.

We are trying to get banks and shops involved too by having gold balloons; awareness cards and raffles etc. We want people to know childhood cancer exists, to be aware of the signs and symptoms  as prevention is better than cure. We want parents to be aware, but professionals too, as I have become aware how common misdiagnosis is and how many children like Harry were told they had a virus; sent home and their cancer grew silently, to the point the cells had multiplied and gained momentum throughout their innocent bodies.
Professionals need to listen to worried parents. Tests need to be done sooner as they are for many other diseases.

I hope together we can put childhood cancer on the map and that the colour gold becomes as synonomous as pink is with breast cancer.