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... 

But there's also some good in there. There always is, if you take a step back and appreciate what's gong on in life... 

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.

Thankful. 

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 this opportunity. This second, and third shot at life I've been given by my donors. 

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 www.playwel.org ! 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. 

Frustration. You New Normal Doesn't Have To Be A Bad Thing...

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I haven't posted anything on the blog in about 3 weeks now.

I've been through a rough patch...

Nearly 3 weeks ago now, I had a couple of seizures. I'd had a few before, if you've read my previous post on hallucinations, you'd know it was a result of PRES syndrome and that the weeks after the seizures were the scariest of my life. During that time, I'd question even the most mundane aspects of life, be hugely forgetful and would be confused by things, such as movie plots, that normally wouldn't phase me.

The day before I had these last seizures, I'd asked my doctor if the ones I had before could affect me over the long term. I'd been feeling for a while that my ability to memorize things had been compromised. I was finding it harder to understand things, and it became more and more evident as I started studying for exams that those previous seizures had impacted my capability to learn and remember things.  

Then, the next day, the seizures happened. I was put onto a maximum dose of anti-epileptic medications. And, almost straight away, my mind was REALLY affected. It made me feel fuzzy, unable to concentrate, confused and perpetually drowsy for the next few weeks. This time though, they couldn't even figure out what had caused the seizures. They'd just... happened... overnight and it was lucky I was sleeping next to a wall so my parents had heard me banging against it when I started convulsing and could come to my aid. And to make things worse, my exams were only a week away.

I was scared.

And I started doubting myself.

It seemed all my positive attributes, not only my brain and mental capability, but also my physicality and my looks, had taken a huge hit during my treatment.

It's made me wonder... what if this occurs forever?

What if my mind and my body will be affected for my whole life by all this?

 What if I never get back to what I used to be. What if this was my new normal?

Before, when I used to doubt myself about my losses in looks and physicality, I could always fall back to the fact that I was still smart to keep me happy and positive. But even that's been jeopardised by treatment...

Now I find myself really questioning all the struggles I've been through and all the effort I'd put in to get past them.

The strict control of my diet for months... what was that for? I wasn't losing any weight, I wasn't getting any fitter and I certainly wasn't starting to look like what I used to either.

The constant exercise I was doing? Why bother when I'd be going to hospital every two weeks where I'd lose all the minuscule gains I'd made? 7 months after my transplant and I can barely last 5 minutes in a game of basketball, yet alone get anywhere close to dunking. 

After being through so much, I guess I expected a bit of smooth sailing every now and then, or a surge in progress or SOMETHING to show for all the pain I'd put myself through. But it hasn't.

And it's... JUST... SO...  FRUSTRATING.

The frustration got me to a point where I was asking myself; what is the point in life? I mean we all go through it and go through our journeys... but what's it all for in the end? Our thoughts, feelings, emotions... in the end, aren't they all just a bunch of chemical reactions? Who cares about us and what we feel? In the long run, aren't we just tiny pieces of some huger puzzle that no-one knows the answer to? 

After a while of this confusion, I needed a way out. After a while, I opened up a browser and headed over to this blog and reread all the comments and messages about how it had helped people. I re-read the post about the lessons I'd learned from cancer. I decided to take my own advice. What I'd done before, I did once again for this newer... longer challenge.

I took a step back and looked at where I was objectively... almost as if I was someone else looking at my life. That pushed the anger and frustration into the background. Then I asked myself why I was feeling pissed off. Why I was getting depressed. 

That's when I realised that the frustration I was feeling; the negativity, the anger, the depression - that was all coming from ME. It was a product of MY MIND. Why was I getting angry then? What was it doing... other than making me more frustrated? 
There wasn't an answer to that question. Getting frustrated about something I couldn't help... that made no sense. 
Why not instead focus on the things I could control instead? 

For the first time in weeks... that haze of anger faded away. But there were still some things that bugged me.
And so I kept asking myself... why?

So the transplant and my treatment have ended up changing me for good.

Why should I let that make me feel down? It was something I couldn't control, and putting myself down for something I couldn't change was useless, and only harming myself.

So cancer had changed how I looked... 

Why was I getting down and depressed about that? First of all, were they eventhinking those things in the first place? Even if they were, why should what someone THINKS about me make me feel bad? Did I even know them? Even if I did,wouldn't getting down, negative and angry about it only hurtme? And probably make them happier?

So I wasn't as fit as before. 

Why should I get down about that? I could still work towards getting back to there. Yeah I couldn't get there quickly.. but losing weight and getting fit wasn't something that happened overnight for anyone, yet alone me. Because I knew it'd take time, I could give myself time to get there. My mentality was the best thing on my side in that battle... having getting back into basketball as a goal would be a great goal to keep me busy, that was for sure... (here's how I managed to do it over time. And how you  too can put the best thing on your side in the constant battle of staying healthy - your MIND). 

Indeed, why wasn't I happy, or proud about what I had done already? 

To come back from not being able to walk to being able to run around the suburb and play a few basketball games (not well I might add, but I did manage to play a few) is a HUGE achievement. Something that I should be proud of, something I could draw from later in life.

This "new normal" of mine... it wasn't something to adjust to. It was something far beyond what I had before. 

That version of me in the past, could he have gotten through what I have in the past 2 years or see life as clearly as I can now? Could he walk down the street, always comfortable in his skin? He did care about people, but could he feel what they had? Did he know what it was really like? He couldn't then. But I can now. And if you've been through hard times yourself, you can too (though trust me - you don't wanna wait to learn it the hard way). 

All the doubt I was having about life after all of this... I re-examined.

What was the purpose of life if all my work could get thrown away in an instant by my health? 

Even if our lives seemed meaningless, our feelings and thoughts still exist. And, if there is no other clear reason for us being here, why not make our purpose to leave this place in a better place than we found it, make others happy and enjoy ourselves in the process? The power we have to give happiness to others can never be taken away. And that, in the end, is what matters, and what lasts. 

Seeing the hundreds of thanks and messages of appreciation I'd gotten from others about my posts made me realise that the happiness I could give others from sharing my experiences was more rewarding than the superficial, fleeting moments of joy that good looks, money, power and fame could bring.

But despite seeing all this, losing some of my mental proficiency was still a scary prospect. Since finding out I had leukemia, I'd held on to a dream of someday becoming the guy who found or helped find the cure for cancers. But these seizures and the side effects I was getting from the medication was making that dream seem unattainable. Hell, I couldn't even count on myself to be the best doctor I could possibly be now, yet alone one who could think up cures for diseases.

And so I fell back into that spiral of doubt. I got scared again. What if I never got back to being as sharp as I was before?

But a few words from my doctor a few days ago took away that fear. 

Those words were very much like what he first told me (that the good news is you're 17 and you have leukemia, but the bad news is, you're 17 and you have leukemia) and was HOW I'd realised that you always had a second way of looking at things.
He told me of a professor of his while he was studying maths (before he decided to do medicine of course) who'd told him that any problem was solvable. All you had to do was take a step back and approach the problem from another direction, from another perspective, over and over again until things became clear.

The same thing I'd realised myself... in someone else's words. 

And so I started looking at my current situation a little differently.  

Maybe I'd end up getting bad marks in my upcoming exams because I just couldn't grasp the logic behind things or remember things as well as I used to. But for the rest of my life, I would have the knowledge that I could still pass in a very hard course while my brain wasn't even functioning properly. 

Why should I stress out over exams that I physically was incapacitated for? Wasn't that only harming myself and wasting time I could put towards getting a few extra marks?

After exams were over, why should I stress about the results? What would that stress achieve other than making me feel bad about myself? It definitely couldn't change the results.

Why was I worrying about the side effects of the medication? I was confused and drowsy right now, but that doesn't mean those side effects would stay with me in the long term. It was because I was put on the maximum dose without any build-up or weaning into it that I was having these symptoms in the first place. Worrying about it wasn't accomplishing anything other than making me feel bad... so why do it?

And so looking at things from another perspective and asking why is helping me to get over the frustration and self doubt that had been building up inside of me for a while. I'm not completely over it yet, I still get angry at myself and depressed when I puff out within minutes of starting a workout, or can't remember things in an exam or when I look at myself in the mirror. But I'm working on it. And I'm feeling happier and happier and less frustrated every day. 

It can be hard seeing another way of looking at things, especially when your brain is against you. It's even harder when you've made negativity a habit, something you reflexively feel and do. But if you can share your feelings with someone else, if you can do positive, reinforcing things like setting an alarm, going for a job or if it comes to it, re-reading these posts when you're at your lowest -  you CAN be happy and you CAN accomplish whatever you want to.

All you've got to do is give it take a step back and give it some time. 


Hopefully the next one won't take as long to post up. This one took a very long time to write with the fuzzy head and I'm honestly not sure if it's that good or if I keep repeating myself... the next one won't take as long hopefully and will probably be about why you can't afford not to give blood.

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