Depression is Worse Than Cancer. How I'm Finally Beating It.

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So. A lot of you know, I've been pretty down recently.

Cancer's tough, I'm sure you can appreciate that. I did for sure before starting treatment. But that fear, by acknowledging it, I somehowturned it into a positive... It meant I wasn't kidding myself. That when the tough things came, which I knew they would, I wouldn't break, but rather look at why they were doing this to me - to get me better. It'd allow me to be human, cry, grimace, scream in frustration and pain when I needed to. Break down a few times. But in the end... it left me only one way to go. Up. A talk I did on this topic - click here to see that!

The thing I couldn't forsee though was how tough life after cancer would be. Chronic graft versus host disease is what I have; the upshot of having someone else's immune cells in you to attack the cancer was that they'd also attack you.

I've got one of the worst cases you can have of it without being terminal. But the major thing that gets me still, even to this day, is the cramps.

They strike at anytime, but happen pretty much everyday, and over time, they've only gotten worse.

There wasn't a night where I wouldn't scream a few months ago. I still do at times. I often can't do something as simple as rolling around in bed without every muscle in my body - from my calves to my forearms and chest, to even my jaw, neck and forehead - firing all at once.

The stories are true. When I cramp, I do turn into a middle aged white dude.

I lived my life one cost benefit analysis at a time. Was it worth getting up to going out to catch up friends if it'd leave me screaming for days afterwards? Was worth it to get that glass of water even though my throat was parched, if it�d induce a round of cramps? Was it worth it to get up and pee, or should I just scream and wake my parents and brother up to bring me the pee bottle when I was busting at 2am?

That was my life. It has been for the last 2, well, now I think about it, nearly 3 years.

But something I didn't notice at the time, despite all the writing I've done about it, despite me telling everyone else to go out and get help for it, despite all the talks I've given and people I've talked to, was that I was going through depression too.

It's hard to recognise it. I'd been through it before...When I lost a friend to a similar disease, a man who left a baby girl, wife,and devastated brother and parents behind to something I'd beat. I couldn't see a point to all this. All I did was scroll down Facebook, watch YouTube videos, unfeeling, unwilling to even move out of bed for weeks, months on end. I did get through it...

What helped was something I didn't realise I needed to do at the time, talking about it, with Dad. And eventually, I did realise I was going through something and found a way to give myself purpose again. To honour and respect my friend, John's, memory, by doing what HE would have wanted for me anyway - being as happy and successful as possible. And working as hard as I could so others wouldn't suffer and John and his family did. In any way possible.

I did all that... I'd felt the same feelings, but even then, I didn't notice what I was going through 'til one night, when trying medical marijuana funnily enough, I realised that I hadn't laughed, or smiled, or felt comforted in a while.

And I hadn't. I really really handn't.

Actual images of me in a down spell. It's true.. I do become whiter when I'm depressed. 

The cramps, the pain I was feeling was affecting me, I know now, moulding me, shaping me, into a person living in fear, and without hope for a future, or even a night without pain.

I was living in a fog. One that'd slow my mind down. Making it difficult to concentrate, or muster up the courage to even get out of a chair, yet alone think about my research, play a game of poker, or go out with friends. Combined with cramps that would contort my hands into the semblance of a still spider, and leave typing out study for the toughest year of medicine and looking through articles a near impossibility that I had to make possible, One. Awkward. Finger. At a time... I felt I was stuck.

My doctor didn't make it easier. She, possibly out offrustration at my constant "pestering" of wanting more than await-and-see, maximising conformity whilst minimising comfort and reliefapproach, told me at one point that there's not just nothing they could do for my situation, but that there never would be. That research into a non-specific symptom like cramps will never happen. That she thought I'd eventually require an intense, risky procedure for my disease, one that showed marginal benefit in me and one that took away my left eye. That my suffering would never end.

She'd prematurely confirmed what I was already prone to feeling in my mind - that I was doomed to a half-life, filled with struggle, pain, failure and eventually death. Without once referring me to a pain doctor, or a rheumatologist, or immunologist or ANYONE for a second opinion.

I'd looked up everything in Graft-Versus-Host-Disease and cramps myself. I knew that there wasn't much out there�

But her words were the nail in my coffin.

Confirmation of what I was thinking in my mind. Fuel for what I was already feeling, what many do... that death would be much easier than living.

I'd made plans. I fantasised about it at the peaks of my pain. That an end around the corner was in sight.

JUST THINK ABOUT THAT FOR A SECOND.

How sad do you have to be to feel that?

It isn�t just me who�s felt this though. Many who are depressed, anxious, or going through tough times do.

Imagine living that way for a year... Or for your whole life..

A talk I did, on the 5 Biggest Myths about Depression. 

Now think about this.

I'm a man who, at the age of 17, when told he had a 10-20% chance of SURVIVING 6 years ago, managed to find a second way of looking at things - an attitude that would lead to me fishing for sharks AFTER MY FIRST, MOST INTENSE CHEMO, that would help me smile even in the depths of hell itself. I�ve accomplished so many things� I've completed a 200km bike ride 2 months after 15 rounds of maintainence chemo, I�ve flown off to Vegas to win tens of thousands for myself, and thousands for charity, against the best poker players in the world, but most importantly, I�m a man who found something to smile about TEN MINUTES AFTER BEING TOLD I'D RELAPSED, AND THAT PERHAPS PALLIATIVE CARE WAS ONE OF THE BEST OPTIONS TO TAKE...

And yet I still couldn't outthink depression...

I tried to. Many times. I applied my own thought process - I took a step back and fought off my doubts and fears one at a time. I told myself that "when I was in pain, just relax, and take it easy," that "It's only temporary, and that in the big picture, it's well worth it for the things I enjoyed." that I should "Watch Tom n Jerry and just chillax for a little bit." Anything, and everything, to pull myself out.

But when the pain came... when that fog struck... when my hopes of a good day, or just a break from it all would get dashed... all those self-assurances, all those strategies would fly out the window, and I'd be brought back into hell.

An accurate depiction of how this feels. An amazing article/page displaying portraits of how people represent their depression. Highly Recommended viewing!

I say this to assure you, that it's not something you can just outthink sometimes.

I say this to show that you can and should get help, for yourself or someone who you love.

I say this because you do deserve a way to get through this. A way to deal with depression.

I say this because, as I�m so glad to announce... I recently found one.

For so long I suffered, silently. I didn�t even recognise that that fog, and my pain, was worsened by depression� And I�m someone who writes about it, has looked deeply into the hows and whys as it all, I�m someone who�d been through it before, and lifted others out it too.

The first step I took to get there came at a critical juncture.

I was at the lab one day, just a few months ago, pushing my body as hard as I could to get through the day�s work.

It was Friday. And I planned to reward myself, by going to a poker game in the city, one I�d been preparing for, for some time now.

But Dad was running late. Time was ticking down, and my body was in severe pain.

And all those feelings, all those dark thoughts came rushingback.

I didn�t wanna keep going. I hated this. The pain. The dependence. The lack of ability to even move at night without more pain. And I seriously thought about lying down on the train tracks and ending it.

But as I left the Ingham Institute, I saw the cancer clinic I�d gone to for a long time, a part of Liverpool Hospital.

I remembered my first doctor. The words he said to me at thestart. How he�d saved me before.

And I went to him.

And thank God he was there.

He sat down with me for a bit. We talked. He asked, �Are you just over it?� And I couldn�t help but break down in his arms and say, �Yes.�

He got me to go to emergency.

I�d asked, and been referred to see a psychologist weeks ago, but the referral papers hadn�t been sent by the receptionist yet. I�m sure people have died waiting for that red tape to be cut.

He made sure I saw one straight away.

And after talking to one, they suggested that I wasn�t in immediate danger, and I wasn�t despondent or anything. But they suggested putting me an SSRI (an antidepressant) while I waited to see a psychiatrist at length.

I pulled out my phone, looked up those treatments I�d founddespite my doctors� insistence that I wasn�t going to be helped, and found one that helped in a similar disorder to mine � fibromyalgia. I asked her if she could prescribe that instead.

Its name is duloxetine. After day 2 of taking it� My pain reduced significantly.

I�m talking 90% significantly.

The cramps were still there, and they were still debilitating, but they didn�t impact me as much anymore.

And most importantly, that fog lifted. And I realised, looking back, just how down in the dumps I was.

The proof behind the pudding. See that document I wrote up for more info if you think you're suffering from cramps. It's only general knowledge, and not intended as advice. But do discuss these options with your doctor. I'll let you know if one works. 

But just as important as my medications was me talking about it to someone. A pretty cool psychiatrist, one who�s been in the business for decades, one who has similar aches and pains as me, and one who gives remarkably sound advice for how to deal with situations.

But the most important thing I did was, when I started feeling bad - even though I found something that reduced my pain, the pain was still bad sometimes -  I started writing down what would get me back up.

Before I got help, I would reflect on myself, and try to give myself advice for getting out of there. But not only are you more affected, more �triggered� by words, and events (I know some of you may scoff at my using this word, but you really are less �able� to control your emotions when you�re down) when you�re down, you also forget not just what things, or thought processes would get you back up, but how feeling up even feels like. You feel trapped. Or else, your mind makes you comfortable at this low level.

Me writing down, in a short, bullet-point format (as opposed to these chunky blogs), in a place I could always go � Google Documents � allowed me to remember all the advice people, and I myself had given to get through rough patches. Here it is if you wanna do it on your own - feel free to copy some bits (though I highly recommend seeing someone you can feel obligated to listen to and fulfil these goals to add some positive pressure and professional opinions into your own case!)

I have it organised under various headings. For instance � I�ll have a heading, �How to bust out of down spells� and actions to take to help do just that.

Under that, I�ll link a YouTube playlist of songs I have that fill my body with drive.

Watch out. Pumping up is very likely. Use at your own discretion

. 

I�ll remind myself, that though there�s pain in starting to exercise, or even getting out of bed, I feel SOOO much better about myself after I complete a workout� I cramp so much less once I start moving a bit.

Under another heading, �Anxiety�, I�ll have tips of things that could distract me when I simply can�t fall asleep. I�ll have distractions � Tom n Jerry, I remember once, when I was having a panic attack, when my mind couldn�t stop thinking about anything and everything � that silly, cathartic, simple show slowed my mind down. It made me laugh.

I�ll also remind myself to stop catostrophising,� a buzzword my psychiatrist mentioned recently, which pinpoints exactly what I�d do when facing a health crisis. Though I�ve had bad experiences with doctors recently, and though researching my own disease has helped me when doctors have all but given up twice, the doctors in emergency do know what to do when someone has seratonergic syndrome. They can diagnose and treat infections. There are still many, many great doctors out there, for all eh ones in between.

And I also remind myself to be human. When going through anxiety, being told to �Just stop worrying,� or to �Just go to sleep,� is often more frustrating than helpful. What�s really needed is a huge and comfort, as this puts perfectly. But in tackling the root fears beneath my anxiety, my fears that my disease is impacting my mind, my mistrust of doctors and fear about my own worries � I knew how to deal with it. I�d done it for some social anxiety I had before. I knew I could get there, but that it�d just take time to become the �old me� who could let things go.

The document is here � for you guys to view and perhaps construct yourself.

It�s still under construction. It always will be. We can always improve.

Interesting to note, these are all things I�ve written and advised you guys, my readers, to do before.

But just as important as that, for me, was making sure that I could recognise the signs myself, and give myself a cue to get to this document.

To do that, I decided to conduct some self-CBT � cognitive behavioural therapy; the art of using physical cues to help people use refined thought process to tackle mental illnesses.

I found a symbol of me � and I carry it around with me all the time now.

A shark tooth.

an actual, 100% legit picture of my chest. Taken from: https://www.etsy.com/listing/235077778/mens-cross-necklacemens?ref=pla_similar_listing_top-5

Not only is it a physical cue that�ll prompt me to go back to that document when I can�t get out, not only does it look cool � it also takes me back to some amazing times I�ve had in my life. The primal joy of pulling up my first shark while fishing. The feeling of contentment after emerging victorious in a large poker tournament I played last year (a shark is a good player in poker). Whenever I grasp it, I can�t help but smile.

And together, with me regularly seeing someone, and along with some medication, I�ve been able to get myself to a place where I can truly say, �I�m happy,� much more often.

As I, and you deserve to.

You, reading on, or your loved ones, or patients, or friends, may not need those medications. In fact, we as a society are probably over medicated. Low grade depression is more effectively treated through psychotherapy, talking about it, and it comes with lower side effects too.

Unfortunately, those who do need the meds, are those least likely to be on them.

It�s hard to pull yourself up when you�ve been down for so long that it�s your whole life.

But believe me � by giving yourself someone to talk to, and by using a system, similar or dissimilar to mine � you CAN get there.

And I hope this helps you do that.

Feel free to message me with any questions or anything really in regards to this. I�m always here to help.

nikhilthegrizzlybear@gmail.com

  

  

Categories: cancer Depression Depression can Still Be Beat Though Depression is worse than cancer

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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. 

Categories: 5 years 5 years after cancer Bone Marrow Transplants cancer Chronic Illnesses coping with cancer graft versus host disease leukaemia leukaemia survivor leukemia survivor surthriver survivor thankful

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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:

Categories: cancer canteen fuck cancer stupid cancer Why the Youth Cancer Movement Matters young adult youth cancer Youth cancer movement

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It's been 4 years...

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May 16, 2011. That was the day I was told I had cancer.

I still remember it. The day before, my hipbone had an 8 gauge needle pushed and twisted through it. Without anesthesia, or even the mildest form of sedation. I lay on my back there that day hoping, against all hope, that it was anything but the disease the ED nurse had suggested the night before. 

The pain was unbearable. The setting, foreign. The anticipation... excruciating. Until the next day, my doctor, this man I'd only heard of til then, entered the room, looked at his clipboard and sighed that phrase...

"The good news is you're 17 and you have leukaemia, but the bad news is, you're 17. And you have leukaemia."
"Your chances... 10-20%..."

I still remember it. The hours spent crying into my pillows, into my mothers arms. The hours of me asking, demanding of anyone nearby, the answer to this question. WHY ME?

WHY. WHY. WHY?

All I saw in my future was pain. Misery... Death. 

And those things, I would go through or get near to, at some point... 

I couldn't picture myself alive 4 years from then, yet alone think about where I'd be. I had no idea I would be here though. I guess I'd assumed that after the whole thing was done and I was lucky enough to still be here, I'd be back to... well... me. That I'd be running around, without a worry. Playing hoops again. Studying, making new friends. Being normal, for once. 

I guess I wasn't expecting the journey, and life beyond cancer to be that hard. But it has been hard. Excruciatingly so. 
Much of the pain was from the treatments itself. But I guess over the years... well... I got used to dealing with that. I went from being so scared of getting a blood test that I'd refuse to give them, risking my own health, maybe my life in the process, to smiling before bone marrow biopsies (well, until the needle entered at least). 
The initial fear of the diagnosis, of what was to come and the anxiety of all the bad things that had happened to me since... well, my attitude, this amazing habit I'd formed of taking a step back and questioning my doubts and fears... that rendered that pain moot too. 

What's really been hard though was dealing with was the lasting effects of cancer. The ones not too many know about. The ones we seem to not want to acknowledge. 
The self-consciousness, the social-anxiety that came with a young man changing so fast.
The deeper, more ground-shaking extrapolation of that.. when he feels his capability, his mind; his ability to function are being taken from him. One by one. 
The pain, that horrid, loathsome pain, that lingers, and saps away at his spirit as it leaves him a husk of what he used to be. Every. Single. Night.
And the depression. From the frustration of it all. From the loss of dear friends, and innocent souls; both to cancer, and this bleak, dreary world. And from the Constant. Unending. Battering of his mind and body. The one he hasn't spoken about to you yet... 

It's been a tough journey. And overwhelming one. It still is at times. But at the same time, I didn't expect, 4 years ago, when I was in agony in that bed, that I'd be the man I am today. That I'd be so God Damn Lucky. To have the best friends, the best doctors, the best nurses, and the Best Family to get me through this.

From the constant unwavering support, the laughs they forced out of me, the words of wisdom they dispensed (whether I liked it or not), and the chance of  a lifetime, the chance to pursue my dream of living a life where I could helping others; from that I was blessed.

I didn't feel blessed the whole time. Often, and sometimes still, I feel quite the opposite. But today I really do. 

This thing has taken a lot. But it's given me a lot more. This ability to think, more widely, more objectively, more logically than ever before. The chance to help hundreds, maybe now a thousand others through their pain, and through their life through my experiences. And this talent, well, this habit (for, as I always maintain, what I did didn't require any innate sense of bravery or wisdom. It's something entirely replicable, by EVERYONE on this planet), of always focusing on, and looking at what I can do to beat something, rather than what I couldn't. 

The final thing I wanna say... is thank you. Not for following my blog, not for giving me the chance to do this, not for making me feel worthwhile, but for opening me up to so many new experiences, thoughts and ideas. And for proving to me that EVERYONE has the ability to change their lives, and themselves, for the better. 

Categories: 4 years cancer cancer diagnosis It's been 4 years life after cancer

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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.

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 =]

Categories: cancer coping with cancer coping with graft versus host disease cramping Dealing With Frustration graft versus host disease GVHD my new normal new normal the new normal

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