Well my lovely bloglets,
Since I woke up this morning I have been thinking about what to write. I need to write. I don't want to whinge as I was so happy in the last post. I'm not feeling that today. I also need to acknowledge that I'm knackered. It's the final push. 4 more weeks of clinic. 5 deadlines. 6 weeks. Done.
I have a third of my dissertation written and all the appendices sorted. That amazingly takes hours. 2 and a bit more sections to write. It will be done by the 30th. It might not be great. But it will be the best I could do with everything else going on.
A new patient as well to research for and to do my case study on. This assignment will probably end up being longer in page number than my dissertation. But it's great to have a new patient especially as I say good bye to one on Monday. It will be our 20th session together.
Last night I saw my local MP to talk about the Teenage Cancer Trust and legislation and what they do and me. The was I was treated. Being ignored, not listened to, a hospital number and not a person. It brought up a lot. He tweeted saying I am an inspiration. I don't feel it. I have been reflecting on the impact of Stephens death and it still is. A baby elephant named after him. I adore elephants as all my twitter lot know. They are magical. My 10th birthday treat was at an animal safari park and I got to ride on one. Nikka. She was rescued from a circus. And I got to ride around on her with her mahout walking alongside talking to her. No chain. She was free to wonder where she wanted. It was amazing.
And a posthumous MBE. How can I ever better that? And what about me? I do so much for charity. Because I want to. I don't do anything I don't want to. It's an honour to do it. I peer review. I have an impact on the NHS. I'm not going to die from my cancer. I don't have a bucket list that ended up in the media. I have been raising awareness about the lost tribe since 2009.
What about me.
I emailed the old CEO of TCT my blog post I wrote the day Stephen died. I will treasure his email back. Words of wisdom. Encouragement. And understanding. I walk around with cancer everyday. But no one knows. It's invisible. That's the things about chronic old mans cancer. And I'm so glad it's like that. I'm very user friendly. No one knows. And that's also the problem. I don't know how long I will have to live with it. I have approximately 10 cancer cells in every 10,000 healthy cells. It's nothing. And it's everything.
I need a break. I need to survive the next 6 weeks. I need to rest and re-charge. I need to look after me. I need a lot of therapy.
I want recognition. I want to be applauded for getting on with it. For running marathons whilst on chemo. For looking after myself. For surviving my insane degree, my class has gone from 22 to 9. For being a patient voice in a variety of groups to ensure others are treated correctly.
And I am. But still. I want everyone to know my name.
I'm a middle child.
And I'm exhausted. End of a manic degree exhausted. So that's better. This exhaustion is different. It's more manageable. I find out about when I start new chemo this coming week....
I am happy. I just thought I was better about Stephen. And it's not him. It's me. It's all my stuff. And I know that. Every time I see a tweet or a Facebook post or an article in the paper about him it all flares up again. This is not to belittle what he did. Or what he went through. It's just the impact it's had on me. I was three years older when I got my diagnosis than Stephen when he died.
I keep on thinking about a bird tattoo to remind me to fly.
With love and hope,