Writing has taken a back seat of late. Baking has taken over with a vengeance - every day a flurry of flour, a cloud of icing sugar and a sauna of a kitchen. Take Thursday for example - 72 cupcakes, 18 Halloween themed fairy cakes and the mother of all Devils Food Cakes. Both ovens fired up, two stand and one hand mixer whirring and both sinks full of dishes, bowls and implements.
All of this however belongs elsewhere - on www.filledwithlovecupcakes.org perhaps. This blog is more reflective, less about food and more about thoughts (tempted to take alliteration a step too far there but foughts really isn't what this is about...)
Last night a group of colleagues from Christian Aid reunited in the pub fondly known as the Old Man's Pub (OMP). On the one hand we did nothing special - the back room of a slightly grotty pub that sells horrid wine. No music, very few seats and nasty toilets.
On the other hand we did something very special indeed. We raised over £400 towards testing of an anti-cancer virus that could save thousands http://icancer.org.uk/
The reasons why we are fundraising for a clinical trial are many and complex. Especially since this drug could be an amazing breakthrough. In a nutshell, pharmaceutical companies are generally interested in research only when it looks likely it will produce a profit and in this case the research is some years away from that stage.
More than that however - the research team placed much of their research in the public domain, so they cannot patent it. Which means pharmaceutical companies cannot guarantee they will own the research and profit from it.
Money - the bible says something about the love of it being the root of evil, and on this occasion it definitely seems as though it is getting in the way of the trials that might see this drug released to help improve the life and life expectancy of many living with NETs (Neo Endocrine Tumours).
Last night however proved that for many people life and love and friendship are more important than money as they dug deep and gave generously. If enough of us do the same we CAN raise the money needed to trial this drug and save lives.
You can read more about it here http://www.telegraph.co.uk/health/9544400/Would-I-takean-untested-cancer-treatment-myself-Hellyes.html
Please do. Dom was a colleague when I worked at Christian Aid. He's a husband, father and all round great guy that I remember as the life and soul of every party. On the decks, playing some great tunes.
If you haven't already heard of NETs they are what ended the life of Steve Jobs. I don't want them to end Dom's life. I want to be at his 50th birthday. And his 60th, 70th and 80th. It cannot be right that this potentially life saving drug is locked away for lack of funding to trial it - let's put that right.
Monday, 1 October 2012
Yesterday we celebrated three family birthdays with Afternoon Tea at ours.
My brother in law took some photos which he transferred to my laptop this morning. Flicking through them just now I was drawn to one in particular as I vividly remembered a similar photo being taken a few years ago.
The image on the left above was taken in April 2009. On that occasion when I saw it I was filled with horror at the rib hump on my back. If you look carefully and note the position of the chrome back of the stool I am sitting on you will see how "scrunched up" I was from the waist up. As I often delight in telling people - where one item of underwear ended another begun!
Fast forward three years to the photo on the right. No noticeable rib hump, a decent waist (with a gap between my top and bottom undies!) and I can slip easily into any off the peg dress.
I post this to give hope and encouragement to anyone considering or recovering from scoliosis surgery. Yes it is a massive challenge to go through and the pain is horrendous, sometimes for weeks if not months. But ultimately it is worth it if it means a better, straighter future.
Not everyone is a suitable candidate for surgery of course, and not everyone has the incredibly successful outcome I have been fortunate to benefit from.
But sometimes I believe it is good to simply share the good news and I'd like to give a big thank you and shout out to all the skilled surgeons and caring nurses, not to mention the patient physios, involved in scoliosis care.
Modern day miracle workers some might say.