Sunday, 22 April 2012

Advocates weekend

Ok so this week I had to get a cough swab in to see if I was still growing pseudo, the reason? The Advocates weekend. This is an event I got told about just after my transplant, I was told if I decided to become a advocate from ambassador of Live Life then Give Life then I would go to the advocates weekend. So as an advocate I started to look forward to the event. Meeting lots of people I had talked to online, many I had received advice from and also who I looked to for inspiration when raising awareness.

Friday was the day I was suppose to head to London, but my sample results hadn't come back. 3pm came and I received a text all clear! I couldn't actually believe it. I was convinced It was going to be pseudo.

I headed home from the gym with Stu and started the manic pack to leave for Emily's chief exec of LLTGL as we would head for the hotel the next morning.

The weekend, well It entailed lots of talks from the trustees of the Charity, discussions on ideas, what we as advocates should do and how the trustees can help us. We also discussed up and coming events and individual projects we have, such as my cycle ride and the Charity ball. Please email me on for ticket info. There was discussions on what we were putting money into as a Charity such as the perfusion machine, speakers project and Robyns rainbow. Do you know you could nominate anyone for a Robyn's rainbow who is involved in transplant and having a tough time. I received one when I was waiting for my transplant nominated by another CFer waiting Sharee Mcphail. I'm glad to say she is also post transplant now and received hers around the same time as me. A Robyn rainbows is a balloon with the intention of letting the person know you are thinking about them in there difficult time and hopefully make them smile. Maybe you know someone to nominate.

Also there was lots of laughs and giggles and we all had dinner together, still the main topic being organ donation.

The weekend was intense, Lots of information to process and ideas to thing about. I feel like I have had the fuel injection I needed! I am ready to go, hurricane Kirstie Is back. I'm ready to create a Storm!

1 comment:

  1. Tanzy,
    I'm glad you receved the all clear on your sample results.

    I would love to take part in the Robyn Rainbow, but I can't, because I arn't old anough, I don't know anyone that lives around me, that's having a tough time with cf.

    All the best wishes

    Harry W