I'm Okay

So here goes, I've finally brought myself around to writing this long overdue blog post. It's not because I haven't wanted to, it's because I haven't felt the need to. This blog was never intended to turn into a wanna be Bridget Jones' Diary. It's a blog about living with cancer. Recently I haven't felt like a cancer patient. I've just felt like me. Although if anything that makes things even more tragically entertaining. After thinking about it hard, I've felt selfish. I have DIPG, but I'm okay. That's not right, it's not meant to happen. I know my current state and simply my existence sparks hope for many families but I can't help but feeling like I'm bragging when I simply say I'm okay, Compared to children all over the world, with the exact same disease who are not. Ive told my oncologist on numerous occasions to do whatever tests on me that they can that could potentially help find cures or just understand things better. Anything, I really want to help. Any DIPG parents/fighters reading this...please contact me with any questions, give my name to your oncologists. We are in such an underfunded battle that some things need to be done ourselves. There are so many theories about the disease out there that are carried only in whispers. Many things to me throughout life have seemed normal. It's only when I read the words of others about the disease that I make a connection. Small things like hearing high pitched sounds in my head. I thought that happened to everyone, turns out that it doesn't! I've also discussed the potential of having DIPG for 21 years. Yes I'm asking, what if I was born with it. My reason being that since birth, I have always focused predominantly with my right eye.its easier for me to turn my head left and focus out of my right side vision. It's something I do naturally. My first stand out symptom was a muscle weakness in my left eye, caused by the tumour restricting the muscles. What made me start doing it if it wasn't DIPG, another complete coincidence? These things are worth talking about! They may seem silly....until someone else says something similar.

There's something I've been meaning to tell you all about for a while and to be honest I'm still not sure quite how to phrase it. So I'll just tell you what happened. I went to see my enthusiastic orthoptician, (fancy optition) the one who likes to throw himself across the room in his wheely office chair, the way you did when you were 4. He spins his equipment round as if he believes he's a flame thrower. He makes me laugh! Especially when he has to check my answers because my sight is better than his. He also made me laugh when he was testing my double vision. He holds a pen directly in front of my nose and moves it around my left side. He says "tell me when it's double" it normally takes less than a second before the pen starts to split into two images. This time it took three "is it double yet"s and two "are you sure"s before I said "well that's weird." In short, my muscle weakness in my eye is improving, my double vision is better by a good few degrees. The nerves could be repairing themselves. Without treatment or medication....something is getting better. It doesn't mean I'm cured, it doesn't mean Brian is going away. It does mean that Brian is being kind enough to let things start working again. I've also stopped acupuncture, psychology. I'm living in my own place again with one of my best friends, I'm looking at jobs, I've even started seeing someone. Everything I once thought of as impossible, is beginning to happen. Including my own existence right at this moment. I'm 21! The age I never thought I'd see. My birthday was so overwhelming this year, I haven't been that happy in a very long time. I have such incredible, genuine friends and family around. So many memories were made, for better of for worse. Which reminds me... Part of my outfit for my birthday were the sandals intended to be part of my wedding outfit. I'm so so happy to have worn them for my 21st instead. A far better occasion! I'm better now that I ever have been. Don't get me wrong, I still have my down days. I have an MRI tomorrow, hence my actual current state is crying into a bowl of strawberries and Nutella watching Notting hill. But hey, I'm okay!