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

Last post:                                     My Story:                                         Next One
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. 

Here we go again... Cancer For a Third Time... When will it learn IT CAN'T MESS WITH ME!?!?

 Last post:                                     My Story:                                         Next One
So... what's been going on you ask? 

What's with that chemo drug you were talking about on Facebook? I thought you said it wasn't for cancer... and now you posted this?

Well, let me explain. 

Recently I started a "chemotherapy" drug, but not for cancer. 

It's called rituximab  - and it's not only in brackets because it's technically, in my case, not a chemotherapy, as it's not "A chemical agent used in the treatment of cancers" (it was given for another condition I have - a side effect of my bone marrow transplant; chronic graft versus host disease. I'll explain it in detail in a later post) but because it's mechanism of action; the way it works is not in line with most chemotherapies.  

Sure, it can have some of the nastier side effects of chemo - nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn't kept on it), but many people tolerate it pretty well beyond that.  

Me included, so I thought after the first infusion. My reaction to it was mild - only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days... the worst side effect came on. 

The cramping. 

Now I've had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They've were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here - don't worry, I'm past that now) but since starting this medication... which is supposed to reduce them over time... they've gotten even worse. 

The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn't stop cramping the entire week. 

But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night... that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath. 

We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm... I'd just won a game of poker. So off to emergency we went. 

Just another day in the office for the masked bandit...

Haha played 2 big tournaments in this mask to protect me from infections. It also gave me an extraordinary poker face.

Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan... A pulmonary embolism... a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT. 

So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I'd received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.

"Well... we got your CT back... Though it's clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma." 

For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play... and the cogs in my brain started whirring... chondro - something to do with cartilage... the tense look on the residents and medical students' faces behind me meant something was up... sarcoma... a cancer... of the  connective tissue. 

Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge. 

"How do they know it's a chondrosarcoma?"

"Well... they don't definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it." 

"Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?"

"Well probably not the former. Infections don't look like that on scans. The latter... well... we're still not sure. We'll have to biopsy it to see." 

And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.

When I told a friend... he just said "You can't catch a break, can you?" It certainly feels that way sometimes...

Still, it's weird though. I didn't have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren't convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere. 

And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying... given my history of acute myeloid leukaemia... that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could've been back, this time in my bones...

My reaction to this? Exactly the same as here:

Yeah... I may have cancer again. But, just like when I first got it, just like when I relapsed, just as I've done in every challenge, when pursuing any goal, just as I've done ANYTHING in life... I took a step back, put it all into perspective and decided to focus on what I could control, on what could help me, rather than all the negative emotions, worries and thoughts; than all those things I couldn't. Because, as I always say, you'll always have a second way of looking at things. And you will ALWAYS be able to choose how you deal with any situation. No matter how hard it seems... Indeed, once you see that second, more positive, constructive path... taking it becomes the only LOGICAL thing to do.

I went out and looked at all the evidence of this being the worst case scenario... my original leukaemia coming back. There wasn't much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn't had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML - the chances of it being that were tiny.

And luckily my haematologists agree. **Phew** In the off chance it is that though... I've still got heaps of options. Even if it's the worst worst case scenario... I've got one of my own. Over the last few months I've been looking seriously into cancer vaccine immunotherapies - thinking of a way of applying them to a wide range of cancers. There aren't many therapies that attack all cancers... my methodology may well do that - it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect - because unlike many personalised therapies, such as this one, this doesn't require huge imput and study of patients' own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease - AML - with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one - and adds more from others. Plus there's another innovative component that'll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me...

But the more likely, less sinister case - that it's a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that - the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues... it may be a bit more  confusing, it may take longer than most patients. But hey! I'll pull through!

I guess you could call me unlucky... getting a really bad... agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn't exactly something you'd celebrate.

But when you take a step back and think about it from another perspective; I'm extremely lucky. Because if I hadn't been cautious, and come in when I started getting that shortness of breath, if I hadn't had that CT scan... we may never have found this til it was big enough to cause me pain, at which point... it could have spread elsewhere. where it's virtually untreatable.

You always have a second view of looking at things. 

So why not choose the one that leaves you happiest?

Well... that's good and all. But that doesn't change the hard part... the treatment, though. I guess we don't really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he's happened to treat a few people I've met through this blog, as well as a good friend I know in real life - so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you're sure it is something that at the very least will progress to cancer, he argues. I guess he's the specialist here, and everyone else is, so I'm inclined to agree.

The surgery is on tomorrow. Or failing that Thursday. And it's gonna be painful as hell, I've been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which'll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back - places he's planning to cut into. So that's gonna be... uncomfortable (a word doctors use to say pain when they don't want to say pain) to say the least...

There are some risks, my lung cavity could be pierced, there could be infections that come around with it. 

But hey - I'm in great hands.  And I'm choosing to see this, just as I have every other time, a minor inconvenience that'll lead to me being healthier and happier in the long run. As I've said before here... and as I spoke about here... fear can be paralyzing... 

But it's not only normal to feel that way about things like these... and knowing of, and acknowledging it isn't scary... it's the best thing you could do for yourself. Because when the hard times come over the next few days of surgery and weeks of recovery... I'm not gonna crash down into despair... I'm gonna look at the big picture. What this is all for. And I'm gonna get through it. Like I always have!

Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they'll keep me going over the next few weeks I'm sure! I'll keep you all updated but don't worry - in the meantime - I'll still be busy. I'll still keep working on those projects I've been hinting at. Cause hospital's boring. This may well get me working more efficiently than ever on it (IF I'm not high on morphine all the time that is =P ). 

Thanks again everyone - and please don't worry. I'm in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too. 

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

Last post:                                     My Story:                                         Next One

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.

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

Last post:                                      My Story:                                         Next One:
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.

https://www.facebook.com/musingsofamedstudentpatient <-- If you or a loved one needs help or if you enjoy my blogs or if you're interested in medicine, like my page on facebook =]