I realised that I need to make a quick update to tell you how brilliantly well I’m feeling. The egg, and the egg puns, have finished so I may have to think of a new theme for my email titles from now..
So a few things to cover, extremely quickly now then maybe in more detail later.
1) I’m feeling great. I’m full of energy and the brain is on tip-tip sparkly form and I can see as well as ever. I was tired for about 2 weeks, then a bit less tired for a few more then from 6 weeks on, all great. I’m sorry I didn’t update you sooner, I just got caught up in the million jobs that I suddenly had enough energy to crack on with. And, a bit of playing with Ivy of course.
2) I have the most amazing Scientific and Medical Advisory Board. They are an extraordinary bunch of people who I’m privileged to call my friends. I am going to write about this more another day because it’s almost unbelievable the number, depth, breadth and expertise who have appeared to help me.
3) I’ve been reading obsessively about brain stuff, this is in my nature as I tend to read obsessively and intensely about anything I’m very interested in. Unsurprisingly I’ve become very interested in this. I am very lucky to have my chief scientific adviser to quiz… brain stuff is quite complicated. I’m feeling very optimistic about life and about the prospect of treatments coming online in time to help me.
4) There’s been an amazing fundraising effort which has blown me away. Flipping awesome effort friends and further afield friends and friends of friends and possibly a few random almost friends. We’ve raised over £10k on my justgiving page ( https://www.justgiving.com/fundraising/amys-brain). My amazing Brighton based friends had a garden sale (sound a little bit like a party that I sadly missed) and raised a shed load of cash. A friend is cycling 1300 miles to Spain (https://www.justgiving.com/fundraising/HTrain) which is jolly impressive. And, another doing a half-marathon (https://www.justgiving.com/fundraising/stevebrown1000). All of this is going into brain tumour research, specifically for Adult Gliomas (my type of cancer). This is without even touching on the rather fantastic ideas I know are in the pipeline. If you fancy doing something crazy or slightly less crazy then do just get in touch. It’s very fun, exciting and energising for me and I feel very special and supported. Thank you and loads of love! xx
5) I have a story to tell you about my great admiration for my Italian friends, Signore e Signora Panino. I don’t have time now as I’ve suddenly realised just how important it is to send this message so you can read number 1.
Lots of love,
ps I’m really happy for anybody and everybody to read this blog. So, if you’d like to direct friends / family / random strangers toward it then that’s great.