Well my bloglets,
In 2008, I can't remember when exactly, I was asked by a girl I had met in Scotland after my diagnosis through to Clic Sargent, if I would go with her to a weekend she was speaking at. This weekend was Find Your Sense of Tumour and I discovered the Teenage Cancer Trust. A charity that was over 10 years old at that point but who I had, and none of my friends had, ever heard of. I also discovered the Lost Tribe, teenagers and young adults (TYA) who are diagnosed between 16 and 24. The cancer kids. This is my terminology but phrases those of you who read my blog or watch my videos - http://jimmyteens.tv/films-by/katie-ruane/- will be familiar with them.
I was lucky enough at FYSOT 2008 to talk to the then CEO who is now in America setting up Teen Cancer our American sibling so to speak, so TYAs get the right care over there. And Simon gave me his business card. I moved to London in the January of 2009 ad me being me, one of the first things I did was to email him and our romance began. Not with me and Simon, with me and TCT.
I could whinge, again, about the 'care' I had in Scotland and its emerging that my care at my current clinic hasn't necessarily been in my best interest in terms of looking after me emotionally and dealing with side effects, but this made me valuable to TCT. I can't tell you how many events I have spoken at raising awareness of what it's like NOT to be treated on a TCT ward. And, even though, far too old, I am still able to do so with a trip to Westminster on the cards in June.
I can't tell you how different it would have been if I had been on a TCT ward and I suppose that's what has been happening with Stephen, especially since his brave, dignified and heart felt goodbye on Facebook. Because of this the media awareness for TCT has been phenomenal. Not only will the money raised be able to build a new unit if that is what is needed, the publicity is priceless.
This is going to sound very strange. And I'm sure that those who knew about the charity before me and were treated on the first ward possibly feel this way about me. I don't know. Still being on treatment makes me have a slightly different view to most my age. I feel, and I don't quite know how to say this. Upset I haven't been able to do this myself? No that's not right. Jealous? A bit. Mental I know. I am so connected to TCT it means so much to me and now everyone has heard of it which is obviously amazing. Awareness of TYA cancer is paramount. I now feel like I have to share and my secret is now public. I suppose I feel a bit like my amazing piece of jewellery is now everyone else's. I don't think this is making sense. I don't know.....
I feel that everyone knows about Stephen and what about the rest of us? For those who are 'normal' who haven't done anything like he has. Milo, my brother, is running the Great Wall of China marathon for me and TCT in May and wants to raise £10.000. That's a phenomenal thing, but now seems to pale into insignificance a bit. I feel I can't ask for sponsorship for him because of Stephen and people donating money for him. I feel that by talking about Milo and me, I won't die, well not from cancer, is somehow a bad thing. It's all very confused in my head.
I do ask though, as a cancer kid (well....nearly 30) to think of those of us who are 'normal'. Just getting through each day the best we can. Not raising millions or being in the national press. Not being at ease with a terminal diagnosis but still struggling. Well that's me and my interpretation. I have 1 more days of my current chemo, two weeks off and then the next lot. For how long? I don't know.
If you can. Let's get Milo his £10,000 https://www.justgiving.com/Milo-Ruane1/
From an as ever-exhausted me,
love, laughter and hope,