Monday, May 16, 2016

5. Long. Years. And I'm STILL Here.

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On this day 5 years ago, my doctors told me these words... 

"Nikhil. The good news is, you're 17 and you have leukaemia. But the bad news is, you're 17 and you have leukeamia."

And they've changed my life. 

They've transformed me from a boy, fresh out of highschool, who wanted to help people, but mainly just wanted to play basketball all day, to a man who focuses on the opportunities rather than the prices paid, one who needs to put his all into that desire to help others...
But also one who often can't. 

It's been long. I've had 2 bone marrow transplants, with 8 rounds of some of the hardest chemo you can get, plus over 20 "maintainence" chemos (in truth, the fatigue they bring sometimes feels worse than those hard ones). I've relapsed, been to ICU at least twice (probably a few more times that I can't remember), lost a rib to a different cancer altogether, an eye to I still don't know what (the other eye's missed being blinded twice now since...), and lost my mind for 2 weeks to a reaction that almost reduced my chances at relapse to 0... The side effects from that last one alone, the drugs I'm still on and the constant threat of those seizures returning, still bear heavy on my mind... not to mention the major side effect of this all - the Graft Versus Host Disease that turns me into a child, cursing, screaming, pleading for the pain to stop, most nights due to the cramps.  
I've had over 300 bags of blood products infused into me, one that nearly took my life, 2 that have saved it (the bone marrow transplants). I don't even know how many appointments I've had. I STILL have monthly infusions, still go to monthly checkups with 3 monthly, 6 monthly and yearly ones thrown inbetween, and currently have 8 specialists looking after me.  
It's changed me from this; 

to this... 

The isolation after being so self-conscious due to cancers' changes, made life dreary, and lasted months before I developed the mentality that got me through it...

The torture of losing friends, over and over, made me question why I even bothered... living.

The pain I still endure every day sometimes that makes me feel the same sometimes...

And it just keeps going on... 

There's so many different ways of looking at all that...
And I bet immediately, you went to the bad...

Being told you have a 10, maybe 20% chance of surviving at 17? A relapse? ANOTHER cancer? Your disabilities? Dude... that's horrible... 

I mean you could also think, "Wow.. you had 5 marrow matches? Many don't even get one (that's something YOU can change - click here to find out how) You've had, and met some amazing doctors and people in your life... you've learned so much from this... you've grown from it all. You're so blessed!"

If you asked me if I feel blessed or lucky, or if I'd do it all over again, my answer... 
would change. 
Depending on the day. On how I felt. On how much pain I was in... Or how much my depression prone mind was affecting me...

But overall, I am a happy guy. The way I dealt with it, by taking a step back, looking at where I was and then realising, when I didn't have emotions stopping me from doing so, that it only made sense to take the path that led me to success... To view the world in the good light, which is always there, and bend my attitude to focus on that so I'd have the best chance of being happy.

It's made me a man who sees opportunity, everywhere, even where most people see dead ends. 
It's made me able to laugh at the traumatic stuff I've been through, able to learn from it, and try to help others do the same, rather than being scarred. 
It's made me thrive, made my desire to help others a need rather than me curling up in a ball of my own misery...

At least, it's made me that... most of the time... 

The times I'm not can be horrible, with spells of utter depression that have lasted months...
leaving me numb, self-doubting, sometimes, suicidal,..

The grief I talked about here is just part of that.
When I'm cramping, and have been for hours, and I feel like I can't do anything, that this body I've been given isn't mine, and isn't worth it... you can understand how I don't really see much point to this all. 

But if you asked me how I felt today... 

I'd say Thankful. 

Not so much triumphant, ecstatic or gleeful... Though of course, there are hints of that.


I have suffered, and in the days up to writing this post, I wondered if that's what I'd be focusing on as I wrote this. But no... It's not. 

I'm thankful for the doctors I had who not only gave me premium care, not only went above and beyond the call of duty to keep me safe, not only listened to me, getting me the medicine that's probably kept me alive, but also gave me the words that made me realise I had a CHOICE in how I viewed life. 

"the good news is, you're 17 and you have leukaemia..." 

I'm thankful for the nurses I had, who not only were the doctors, the real healers who'd look after me, administering the poisons that brought me misery and bringing me the meds that relieved that, but also be my confidants, carers and friends in all this. My angels. Who I couldn't visit today (I've got an infection I don't wanna spread to other critical patients) but would, if I could, give them the world for the comfort and happiness they brought me in the hardest times of my life... something they do for every single person they care for.  

Me at my 18th birthday, when I was feeling so down and out about being THERE of all places, and at my 22nd, when I was told I had a THIRD cancer and needed surgery.
Both times, these amazing angels picked up on it. Both times, they threw me a party. Both times, they showed how much they cared. 

But what I'm thankful for most, is my family. An eccentric, funny, spontaneous father who'd always be able to make me laugh; something you need in tough times...

A brother, who's given up so much for me, and continues to do so Every. Single. Day of this young life, despite my being the biggest, baddest, most dickish troll ever... 

And a mother, who's done, and would do anything and everything for me. Who's slept in a fold out, often basic chair for months of her life so I didn't have to move that metre and a half to my phone. Who's had to watch me go through hell, ICU, and so much trauma, helpless, unable to make a difference as I did. Who's always there for me, who takes so much of my crap and somehow still somehow not only loves me, but laughs about it, and inspires me... sometimes even as I'm berating her...

just one example of how my mother, hell, any mother, will be the most selfless, loving beings you'll ever encounter.
just wow...

And I'm thankful for you. You guys who've read this, spread it, the friends who've kept me happy, those who've allowed me the privilege of coming into your lives to help, and just be there. 

And I will do anything and everything to try an make the most of everything I've been given... Starting with this;

My idea, trying to hack into the billions of hours we spend online and make good come from it.
to try and help those we love to watch keep doing what they do, for a living
to try and make it so easy to help people, by just opening an app, or loading up a site, you can change the world.
Tell anyone you know who entertains to join at ! They won't regret it. For sure

My only wish, is that everyone be as strong as they possibly can. That they learn from me and my experiences and not wait for tragedy to strike, or circumstances be changed to become the best possible version of themselves. That they be able, and willing to help those who are struggling... That's what my new charity, an app/site - PlayWell, is all about. 

And look... if you can do that... then you've made this guy on this day, happy. 

Thank you. 

Tuesday, May 3, 2016

A True Miracle that didn't have to be...

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So recently, my uncle's come over from India for a visit. He's THAT uncle, the one who had chronic myeloid leukaemia and was treated at the same hospital, for the same procedure (a bone marrow transplant) by the same doctor, as me. The one I talked about here.

His story is heartwarming. He got his leukeamia at around the same age as me, he came here, Australia, trusting his life and limb to a foreign lands' systems, and a doctor he'd never seen before and he stayed here with us. I wasn't even 10 at the time. I didn't get what was going on, didn't understand the processes going on in his body. I didn't even know what cancer was. All I saw was his suffering, his progression from a healthy looking, young man, to an emaciated wretch. 

But he got better. He went back to his homeland. And after problem after problem, he defied the odds, defied his doctors, and now has a son. 

But amidst our long, deep talks, I found out how miraculous he really was. 

See, he was diagnosed in India, and after he was told he needed a bone marrow transplant, it was almost entirely left up to him to find a match. That was part of the reason he decided to be treated  in Australia. 
There's a 30% chance of siblings being a match. His brother wasn't one. He didn't get one on the bone marrow donor registry. Only 50% of people do... and that statistic plummets when you're of Asian, Middle Eastern, African American or Aboriginal descent. 

A video that explains the process of matching pretty well!

There were other databases to look through... international ones and the like. But my uncle wanted to cover all bases. So he asking all his cousins to get theirs checked. The HLA profile that your donor needs to match to you in a bone marrow transplant, comes from your mother and father. There are literally THOUSANDS of possible combinations of these. The chances of matching to your sibling are decently high... yes. But when you have another family, not blood related on BOTH the mother and fathers' side to you, the chances of a match hit the 1/MILLIONS again. 

He went to the hospital to arrange the test. But India is a poor nation. And the public hospital he went to had little in the way of resources, yet alone specialised tests and facilities for the complicated, and, at that time, fairly new, bone marrow transplant. 
So his doctor was adamant. Given the tiny chances of a match being found, he could only have ONE of his cousins tested. 

He was devastated. But there was still one chance. 

One of his cousins put his hand up to take the test. But on the day, there was a mix up. His cousin couldn't make it! He was stuck in traffic!

There wasn't much time... he only had one more shot really... So the other cousin was called. 

He took the test.

And he was a match. 

 A life-saving coincidence. A less than 1/1,000,000 chance... who could have forseen that delay?? Who could have seen that coming?? 

What if it hadn't...

The thing is... needless miracles need to happen every day to change lives. 

I myself was told, after being told I had a 10 or 20% chance of surviving, that my chances of getting a bone marrow match was just as small, as my mother's half of my HLA was extremely rare in and of itself. 

I ended up getting 5. 

40% don't even get ONE. 

And the craziest thing is... Joining that bone marrow donor registry, hell, joining that organ donor registry takes little to no effort at all

If you're reading this in America... all it takes is a SWAB OF THE CHEEK. (Click here to find out how! And encourage your friends to!)
They take your sample, check your DNA and write down your profile in the database. 
In Australia, only a small sample of blood when you're giving blood anyway, which is not only easier than most people think (just a jab, and 5 - 10 minutes), but is beneficial to your health and hip pocket too!
You have a 1/400 chance of being called up per year... so chances are you won't. 

But when you do... you not only get a chance to save a life... It's actually pretty easy too... 

Because contrary to what people think... In over 90% of cases... bone marrow transplants... don't actually involve the bone marrow at all. 
What they need are your STEM CELLS inside the marrow. The ones that make blood cells, so that it can repopulate a recipient's blood after it gets hit with chemo, and so that their white cells can kill off any cancers left! Check out the process below. 

It's a miracle my uncle  is here today. It didn't have to be though. And if anything will convince you to help make this end... it's gotta be this. 

To join the bone marrow donor registry:
To become an organ donor: