Monday, 2 February 2015

Eating My Words, And It Shows On My Face

I said in a recent post that I might not have much to write about over the coming weeks. Well, it appears I jinxed myself with that statement.

First and foremost, I have been forced to wear my glasses a lot more as my eyesight deteriorates. I wouldn't mind this as I paid £270 for the things so any extra use is welcome. What I do mind is the fact that they suited me a lot better with a full head of hair. One haircut and I've gone from Clark Kent to Heston Bleeding Blumenthal!

With Hair (The Clark)
Without Hair (The Heston)



Since the crowdfunder page went live (and smashed through it's initial target in under a day, well done everyone!) I've been contacted by a few media representatives asking questions about the whole situation. The result of this was me giving an interview over the phone yesterday evening and having a photographer come to my parents house to take some photos. Now, as anyone that knows me will tell you, usually I'm all about having my photo taken. However, the current chubby face situation is having an effect on how photogenic I am and, as you can see from the photos, I look like a mildly irritated potato.

The resulting article has really surprised me, the online version (http://www.walesonline.co.uk/news/wales-news/heartbreaking-story-24-year-old-welsh-commonwealth-8558771) has been shared all over the place and is currently the no1 most read news article on Wales Online. It has also been in a number of newspapers that circulate around South Wales.


The amount of support and interest has really been overwhelming, and I'm hoping we can use this to help raise some money for a few good causes as well as for my little trip down under. I'll write another post when I've got some more details about exactly who we hope can benefit from the fundraising that is going on, but we're thinking at the moment it would be good to help out some smaller, brain tumour specific charities and foundations as opposed to the larger charities that (while equally deserving of support) get a lot more attention.

9 comments:

  1. Hi Jamie. I have just typed all this and it hasn't worked... try again... I am a friend of Ratty as we call him, just married to George's aunt. My brother Charlie got a malignant grade 4 astrocytoma aged 15 and was given 3 weeks to live. This was 1985. Cutting a story short, he is still here and the doctors say 'Charlie we can't understand why you are still here'. He was given a biopsy (all they could do, very rare positioning of tumour, they had seen 9 only like it) and it has seemed to be in remission ever since. Btw I took him skiing in Zermatt a year or two after the operation. As you can imagine we have done a lot of thinking over 30 years. What I have drawn from it is that the treatment in the 80's was very basic and is improving exponentially, compared to now and that Charlie has paved the way for anyone else getting a tumour. Our American cousin Rob is a doctor in the US researching just this coincidentally. I asked him to send me his papers and couldn't understand a word. He says they are making huge progress with it. If you want to compare notes feel free to email on horner.gc@gmail.com. What I feel was the hardest for Charlie in a way was dealing with other people, the sympathy and so on. (Are you reading, everyone. Be normal, be fun, don't be afraid to talk but don't be a bore.) OK best of luck. (My father got Silver in Commonwealth Games rowing in Australia, for Wales, with his brother, and the Luke twins from Cardiff, coached by his father). Kind regards, Giulietta Horner PS You will get a lot of kooky cure offers, obvs take no notice !!

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  2. And on FB under the name Cecilia Edwards .

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  3. Don't actually know you, so didn't know whether to leave a comment or not but I read the article on facebook today by Wales Online and I then read your blog earlier today. Just wanted to say that your positive attitude to what's going on is very inspiring, certainly puts things in to perspective and made me think sometimes you just have to get on with life no matter how tough things get. By the sounds of it you will prove all the doctors wrong for sure! Going to Austraila will be amazing!.. it's next on my list too. You must have some lovely family and friends, I will share the fundraising page and continue to follow your blog. Wish you all the luck for your future! Also I only saw what you looked like from the new photos in the article which I thought you looked very nice in, so I don't think you anything to worry about there :) xx

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  4. Sorry, one more thing. It is a very good idea to keep a diary of symptoms, treatment, dosages, drugs etc as you will probably be seeing different specialists and nurses and where the notes have not arrived (!) and then you can give them the exact information yourself without having to try to remember. Everyone is wonderful but it isn't always as joined up as one would wish!

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    1. Hi, thanks for all the tips! I'll bare them in mind, and hopefully things will go the same way for me

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  5. Hi Jamie,
    I volunteer for a charity called Brain Tumour Action, and one of the Committee asked me to leave you a link, in case you were interested, on Magnetic Resonance focused Ultrasound. It's on page seven of our latest newsletter: http://www.braintumouraction.org.uk/wp-content/uploads/2014/12/KITE2014.pdf

    If you want to find out more, or have a chat about your treatment/experiences, please do not hesitate to get in touch at administrator@braintumouraction.org.uk or call 0131 466 3116.

    Very best wishes - oh, and it's definitely more Jason Statham than Heston B.

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  6. Thanks for the link I'll give it a read. And more importantly, thanks for the opinion on my Heston similarities haha

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