Wednesday, June 17, 2015

My Eye Opening Experience. Part 2. It's happened again.

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A video update of this!

So... yesterday I woke up with red dots all over my right eye's field of vision, as I did a few months ago; days before I lost vision in my left eye permanently.
I was scared at first. I kept my calm, thought about what to do. I knew I had to go to emergency fast this time, and did that. But on the way thoughts were racing through my mind...
They didn't find out what it was last time.. the thing (a central retinal venous occlusion) causing the red dots, vision loss, and ultimately, the nerve damage, didn't really have a treatment. You had to know the cause to treat it. So even though I'd gotten to it earlier.. there probably wasn't much they could do for me.

I wasn't shocked or scared for me and my loss of vision, though I was saddened at the idea that, well, that could have been the last day I could see. But, within a few minutes, I was already taking a step back and questioning that sadness; why I was feeling it... what I could do instead to be happy. And from that objective perspective, I realised that, well, there was still a chance that this could subside or turn out to be something else. But even if that didn't come to be... I remembered this, the reflections of this man I watched a few months before I lost my vision in the first place.

 Honestly - click that play button and you'll watch his channel for hours. He's awesome.
I remembered my own words from February, when I'd lost my vision. Yeah, if it came to it, I'd lose my vision.. the ability to do most of the stuff I loved... But I could still THINK, WRITE, and... well, I guess I couldn't exactly Read. 

But I also really intensely focused on this amazing girl I'd heard of from a good friend. She's blind, and still doing so many amazing things! As are these 7 blind people, and many others in the world too. They have these amazing aps, these programs that can read things on the computer for them... they aren't just living... they're THRIVING, and doing so many amazing things for us! There was no reason I couldn't too. 

But it was her I thought about most. I guess that just highlights the power that connections to others have when you're going through rough times, something I talked about that in my last post.

I only found out Stevie Wonder was blind while writing this... wow.

This still would probably mean that all my big ideas would fall into dust... A new way to attack cancer that may well cure it for many, even most people, my book on how to get drugs out quicker and cheaper and this big idea I'm working on that'll bring in, potentially, billions more dollars to charities around the world; all that, could be gone forever...

Well.. the good news is that I haven't lost my vision! Not yet at least! Within 8 or 9 hours, I had lost those red dots in my eyes. Last time... they stayed for 2 or 3 days before I lost vision entirely. All I had after that was this cloudiness in many spots of my visual field, and when I "woke up" (I haven't gone to sleep yet, had a high dose of steroids that stopped me from sleeping til like 5 yesterday. I didn't get any sleep last night either...) from lying in bed, even those were gone.
Hopefully this is the best of signs and it won't be back over the next few. I'm going to an appointment in a little bit to hopefully confirm that good news. I'll update you on that soon.
But the fact remains that this was the same thing as last time. They confirmed yesterday morning that it was a CRVO, albeit, a partial one, with less bleeding than last time, and it presented the exact same way, meaning that it's not a random one off.. It could be due to the treatment that I'm getting for my graft versus host disease, which is working, slowly but surely (meaning I may have to stop it), the graft versus host disease itself (which I've exhausted almost all option of stopping to this point) or something else entirely that we still don't know yet. 

So it could happen again... At any time... 
And next time... it may not turn out this good...

So I guess I have 2 options now. I can either sit back, sulk feel cursed, resign myself to this gun to my head... Or I can use this to motivate myself. I can choose to make something good of it. 

I'm gonna make sure I put MY ALL into all those things now. I'm NOT gonna waste any more time scrolling absently on Facebook, watching YouTube videos I'm only watching to not work or watching the same old TV shows again.. I'll save those for when I need to rest. In the meantime, I'm jumping into all those things I talked about! And I AM gonna make them happen! Here's a glimpse into the ideas I'm talking about in my book on big pharma. The others, I'll get to sooner, rather than later, now. 

But I'm also gonna make sure I savour every place, every person, every single thing I get to see now. I know from amazing people like that man in that video (Tony Eddison) and that girl I talked about before, that even if it comes to it... I can still lead a full, healthy life. 

I won't be able to write as easily... but I'll still be able to talk, and, well, I could Vlog instead of Blog if it comes to that... I should probably do more of that now anyways.. So subscribe to my YouTube channel.

But while I can... I'm gonna make the most of every moment. Every sight. And enjoy every little thing about life I can!

And you guys should too!

The Most recent update.

 Another amazing video (all his videos are amazing) on Tom Eddison's YouTube.

Monday, June 15, 2015

Why the Youth Cancer Movement Matters. Why Connecting To Others Matters.

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I got to watch the Waratah's game in a corporate box on Saturday thanks to the Sony Foundation! But in truth, I barely saw the game... I spent the night talking to other cancer patients. One still going through treatment, one just out of it, and others, friends of mine who I'd met in prior events.

It's seriously amazing seeing young cancer patients see other patients their age for the first time. I still remember my first meeting with another patient... It was 2 days before my first bone marrow transplant. 'Til then I'd been relying on me, breaking all the fears and worries down into pieces and trying to find that best, most healthy, most happy path to follow. And I'd been doing that. But with this new, foreign, hard treatment coming... I was scared. No matter how much I tried to hide it. But seeing, talking to someone who'd been through it all.. that was... amazing.

Not only did I get heaps of tips, heaps of advice for what was to come from them... tips that would keep me going through the roughest month of my pretty rough life, but I also got this sense of companionship. This sense of... hope.
That others before me had been through what I had and gotten out the other side, alive, and smiling.

And that meant the world to me. 
As it does to others.

Whether they be patients my age, those who are older, or people going through any trouble for that matter. 

One of the guys I met had finished treatment 3 months ago. He was bright, and cheery; happy to be out of there. But at the same time... he'd been through so much. He probably still was going through a lot. He asked me... How did you cope with all the mind stuff, the sadness. Depression going through it.

And I told him. I guess I'd started off, after being diagnosed and devastated,by taking a step back from it all  and looking at things from another perspective. As if I was watching all this happen to someone else. From there, I could question what I was doing, without those negative emotions getting in the way. And I could see a way around it - a second, better path to follow.

But at the same time... it wasn't like it was easy. I didn't become a fearless, courageous soul overnight. I never did, in truth. I was still scared, still feeling cursed for having this disease months into the treatment. I still feel that sometimes today... But every time I felt that way, I did that exact same thing. I took a step back, questioned those doubts and fears, and then looked at what I could, and should change instead. And that made taking that path that left me happiest, the only LOGICAL option.

But with time, with constant struggle... with loss. Not only of other patients, but also my capabilities, it was hard to see anything to be happy about. It took a long time for me to see this after years of struggle even after my treatment was supposed to be done. The struggle of the cramps... the steroids... the physical and mental inhibitions this thing had put on me. But after a while, after retrospectively looking at things.. I did.

We, as humans, tend to focus on the things we don't have. For me... that was all the treatments I was going through. For you it may be completely different, or seemingly trivial in comparison. But whatever it be, that approach inhibits us. It leads to us feeling like we have no value. We have no ability. But when you take a step back and think about it... You ALWAYS do have things on your side! I mean me... after the years of struggle.. after the loss of my physicality, and especially after the loss of half my vision... I felt so stripped, so defeated by this disease. And I still do, sometimes. To this day.

But in the end... I still have so much. Not just in comparison to those who are worse off compared to me... but for ME too! I can still read. Write. Think. I can still help others, from the huge, wide-reaching blog posts, to the tiniest gestures I make in everyday life!

And no matter how much cancer, or other struggles, make us feel otherwise... We still have, and WILL ALWAYS HAVE the ultimate decision on how we feel about it! Again that isn't easy to see all the time. We won't always feel that way too... But that's normal. Indeed, if we admit that it does suck on occasion.. we're only more prepared in case we feel that way again. We'll know, at that point, that we can get out of it!

Talking to him was awesome. Him and his girlfriend were funny, good people, who were honestly thrilled to see that they weren't alone in their journey. And hearing that his doctor had helped him the most in making him feel safe, and healthy, in both his mind and his head (she said to him "I'm not worried about the cancer so much as your head!") was so encouraging. It's great to see doctors our there who get that. Who care for their patients as people. A fine example for you med students and doctors reading this.

But another boy, only 15 years of age there, was just as amazing to see and meet. He started off shy, a little reserved, he must have felt rather conspicuous at first amongst this new crowd. He was still going through treatment. In fact his next chemo was on Monday. Well, I guess it's started now...

But after a while of meeting some seriously amazing, bright souls; in particular, this amazing young lad who manages to be so bright, so cheery, so uninhibited (he was dancing like crazy every time a team scored) and always so welcoming and caring to outsiders, everytime; that changed. He was smiling, joking around with us by the end of the match. And his mum who was there was so grateful.

Because that was the first time she'd seen him smile in months.

Cancer patients are often alone. Bored, scared AND isolated is never a good combo. So if you know someone in their position, or in any position of vulnerability, isolation or sadness for that matter, never underestimate the power of just saying "Hi." and talking to them. Whether you're a doctor, another patient who's also alone, or just a regular soul, do reach out. Cause you never know how you can impact others' lives, as well as yours for doing this. Because honestly... nights, and conversations like these could be the most amazing of your life. They definitely are for me.

And never underestimate the power organisations like Canteen, LifeLine, Stupid Cancer, the Sony Foundation and any other organisation that connects people going through hell to their angels, make. The last link is to a list of each nation's crisis and emotional support programs.

Later this year, Australia is holding it's first ever Youth Cancer Summit. Gathering patients, their siblings, parents and friends in one place; Sydney, to get more amazing meetings like these going. Now, and into the future. Do help get as many people as possible (by contributing to a fund which supports people's travel and sponsors the whole conference) here: