Dad. The Jokester. The Savior. The Forgotten One.

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Dad. My Forgotten Carer. For best results, and to watch all the videos - read this on the website.

I've talked a lot over the last few weeks and months, and years as well, about how much I'm thankful for my family; my carers. But though I've talked a lot about what my amazing mother has done; her sleeping by my bedside, being there for me, every day of my life, even before diagnosis (no matter how badly I treat her) and though I've dedicated an article to my amazing brother, who also despite all the jokes, the trolls and sometimes abuse I hurl at him, is always the first at my side when I'm screaming out at night in pain; I haven't really talked about my Dad as much. 

I guess it's hard sometimes for men to express one anothers' appreciation for eachother. I'm fine with it... I love the fat bugger, and though I love hearing his dismissive, embarrassed reaction when I sneak in a little "I love you" over the phone, or as he hands me something, I really do mean it. 

One of my favourite Youtubers showing how awkward it can be at times for many Dads to hear those three little words.

So why haven't I thanked him yet? As he rightly deserves? Well... I guess it's harder to describe his role and make it seem really meaningful. Mum - well, she was a MACHINE, the brain, the torso of this movement. Always keeping us going. Keeping us protected in advance, booking appointments, looking after me most of the time; all the while somehow working and keeping the house in order too. Nirav, my brother, the limbs. Since he could drive, in the middle of his last year in high school, he was given the keys and made to dart around Sydney, moving bags of clothes, delivering boxes of food, taking me to appointments, and, more recently, events where I could have fun (when the parents were unable or unwilling); all at the expense of HIS own desires. 

But where would dad stand? What would he be in this, the body section of my life? 

Well... I've got to say. He's been the heart. 

It's not that he doesn't do the practical stuff. Oh no - he's there when we need him most, taking his fair share, often more, of the shifts when I was in hospital, or when I needed to get to an appointment (and couldn't get myself there). He's there for me when I need him too... catching me, both literally, and figuratively, whenever I fell. I still remember the words he said to me one night, when he cradled me, like a baby in bed again, and I asked, I pleaseded softly, "What's the meaning of this all? Why do we live? Why do we do this?" He didn't know it at the time... But I was in severe, clinical depression, struggling to come to terms with the loss of a friend. And it was those words that got me out of it. 

But I'd say the most important, most impactful role in this journey was his relentless quest to keep me smiling. 

And by god he did that part of his job well.

Always making light of any situation. Dad constructs a shrine, with offerings to boot, for himself as he wins Sunday morning tennis (for once). 

When you feel like you're at complete bottom in life... Humour can be a great way to distract you from your troubles. Or even make them feel trivial. And there were MANY instances where he managed to do that.

I remember almost straight after diagnosis, the day after I think, when I was allowed home for the last time before chemo. One of the things you gotta do before you start any (well most) chemos, as a young man at least, is store sperm for the future. Many chemos can leave you temporarily, or even permanently infertile.  

So there I was, still shocked, still in denial, still afraid of what was to come the day after these  scary doctors told me I had a tiny chance of staying alive; a 17 year old, shy, somewhat repressed kid sitting in the middle of this waiting room with 3 or 4 other dudes, holding a small little cup in my hand with my Dad next to me. 

I still remember the weird, slightly disgusted look the receptionist gave me as she handed me the cup. I can still feel the judging eyes of the others in the room as I looked down, avoiding eye contact. In my mind, I was picturing them shaking their heads, muttering, softly, about the sin I was about to commit. 

To be honest, I didn't know what to expect myself. Was I just supposed to awkwardly excuse myself and somehow find the inspiration, amidst all that, to, to put it bluntly, blow a load in a cup? 

But then Dad leaned over and whispered this joke in my ear. 

"The Queen was inspecting London General H0spital one day, when suddenly she noticed a man in his room, masturbating furiously..."

I shook my head slightly, amused. The Usual. Dirty. Dad joke was incoming...

"In shock, she turned to the doctor and asked, 'What the hell is this? How dare he do this in front of ME!'

But the doctor replied. 'Oh no Your Highness, this man has a condition where he produces too much sperm. He needs to release himself every few hours or his organs may fail!' 

The queen nodded, still shaken, and walked further down the ward, and noticed another man in his room, this time, getting a blowjob from a nurse.

'And what's this then?' the Queen said furiously. 

'Same disease. Better insurance.' " 

A typically crass, typically DAD joke, in a typically awkward situation. 
But that one joke eased that tension, and amazingly... it made me  smile. 

That was the first time I'd done that since diagnosis. 

And then with a pat on the backside and a whisper in my ear, "Time to spill it" he left me walking, still embarrassed, still self-conscious, but still, trying to smother a smile, into that room. 

And since then he, and I, as I've learned (some may say, been corrupted) from his antics, have done SO much more. 

If you thought that joke was dirty... you should see some of the chain emails he sends me. He always happens to have a perfectly suited joke f0r any moment. But some of the more spontaneous moments we've shared have been the most hilarious. The ones that made me forget the pain, the ones that got us AND the doctors and nurses laughing, the ones that picked me up. At least half the "Humour in Hospital series" features him - check em out if you still want a laugh after all this. 

But of all of the funny moments over the years, this would have to be on of our favourite, and one of my brother (Nirav)'s least favourite. I'd say it just narrowly trumps the time Dad and I cracked up in the lifts (once we were safe), after smuggling a 40 inch TV into the hospital without anyone noticing. 
One morning after a doctor's appointment, this was not too long after my second bone marrow transplant in 2013, we got a call from Nirav asking us for Red Rooster, his favourite fast food joint. So we decided to get him some. 

Moral of the story... be careful what you wish for. 

Trollin the bro - What Cancer Patients Do In Their Spare Time #4
So we went out for a hospital appointment and got a text from my bro to get him some Red Rooster.Moral of the story... Be careful what you wish for...We actually picked out red ones for this purpose ahahahaha
Posted by Nikhil Autar on Monday, 9 September 2013

So we went out for a hospital appointment and got a text from my bro to get him some Red Rooster.Moral of the story... Be careful what you wish for...We actually picked out red ones for this purpose ahahahaha
Posted by Nikhil Autar on Monday, 9 September 2013

Poor Nirav was sick at the time, and so keen to get some good food into him, I almost feel bad for doing this looking back. But then I watch it one more time, and see his typical, "I-want-to-be-mad-but-I-can't-believe-they-did-this", smothered smile, and laugh again.

Unfortunately Nirav ends up on the butt end of a lot of our practical jokes...

Trollin the bro - What Cancer Patients Do In Their Spare Time #2
Hey guys - we have a new hammock!!Had...
Posted by Nikhil Autar on Wednesday, 15 May 2013

That was actually an accident. But still, no regrets. For best results - keep your mouse clicking at halfway through that video and replay his face as he gasps over and over again.

Disclaimer... no children were harmed in the making of this production. 

Dad would also keep me busy, and exercising a lot of the time. And part of his job as chief entertainment officer (CEO he calls himself) was to get me out and doing normal stuff. For a long time in my recovery phase, he and I would go watch a movie every Monday night, when the tickets were cheap. He was the one who'd urge me, drag me to start exercising after a chemo of Bone Marrow Tranpslant; starting from me on wobbly feet, only managing to walk laps in the pool, to full blown runs and games of tennis every afternoon. That's nothing when you think about the hours of training he put in with me to prepare me for that amazing 200km ride we did to raise funds for cancer research. 

But the thing I looked forward to most was when he took us out on the boat to fish. 

What Cancer Patients Do In Their Spare Time #1
Deep sea fishing on a chartered boat!The fish is a morwong (aka sweetlip, deep sea bream) - this was after pulling up other fish and 500g sinkers in 50 - 100m of water all day haha. It's tiring stuff but fun nonetheless!
Posted by Nikhil Autar on Wednesday, 23 January 2013

This was me about a few weeks after the second toughest chemo I'd gotten, a mere month after I had seizures and consequent hallucinations that left me in Intensive Care for 2 weeks, a few weeks before I started work-up for my second transplant. Some would say it's a bit rash to be out on a boat, in the middle of the ocean, then. But hell. Dad's training, juicing (well, he did the whole juice thing for a week before deciding it was too much) and motivation got me to a stage where I was ready for it! 

But of course, not all these moments were flashy. He's not well known for sharing, both on the plate and on the boat.

What cancer patients do in their spare time #6
Sand shark that I caught today =] About 1.2m took 20 mins to pull up.
Posted by Nikhil Autar on Saturday, 25 January 2014

The fish was on MY LINE, and I was pulling it up, but dad thought my hook was "snagged"; stuck on the bottom or on the reef. In his very words, he said "Oh, it is a fish!" before deciding to reel it up for himself, taking all the glory, despite me doing all the hard work in hooking, and getting it off the bottom. To this day, we still argue about whose fish it was. 

C'MON THOUGH - IT WAS ON MY LINE!!!

(I'm sure he has a response to this coming...)

But this was one of those more memorable, one of my most favourite moments. I was cramping, a lot one Sunday morning, and just stuck in the shroud of fear, frustration and gloom that pain brings. Then I hear Bon Jovi playing in the computer room, three sets of walls away, my Dad's voice booming horribly off key over the top. After a while, and a few more '80s classics, (with a few Indian classics throwin in between of course), he barges into my room, ushers me and my sleepy brother into the next one and together he and mum serenade us with karaokes and dances of the latest and greatest Indian Pop. After a few minutes of me complaining about being dragged out of bed, that "my poor muscles were too cramp-prone to sing and dance along", I found myself belting out classics and dancing too. After a while, the playlist turned to one of Dad's favourite songs - Mumford and Son's "Little Lion Man,". As his favourite bit, the long banjo solo, came on, I had the genius idea of drawing a Guitar on his Belly. The rest is history folks.  

What cancer patients do in their spare time #5: popstar dad
What cancer patients do in their spare time #5Drew a guitar on Dad's belly... was not disappointed.#superstar #guitarhero #partylikearockstar
Posted by Nikhil Autar on Saturday, 21 December 2013

He's not perfect. He's had his share of gaffs and failed jokes inbetween. And he is NOTORIOUSLY lazy. "If you want something done, don't nag me, tell me once and it'll be done in 3 - 6 months" is his favourite mantra, to mum's constant irritation. But he, almost single handedly, has been the reason I've been able to smile, and thence been able to help others through this blog over the past few years. 

And I can't thank him enough for it.

I'm surprised I'd forgotten to officially, on here, 'til now. 

But over the last few years, the last 6 months in particular, we've started getting frustrated with eachother. I'm now 2 and a half years post second transplant. This graph that one of my transplant doctors showed me... one that showed that where I was at now was where the people surviving was essentially the same... that I was essentially cancer free FOREVER -  took me out from under my feet...

   
But though my chances of relapse are near zero now... I'm still suffering. The nature of the bone marrow transplant procedure, one that's designed to get another person's immune blood cells, and hence, immune system (as white cells are included in that, and as blood stem cells are found in the bone marrow) being produced inside me to kill off any cancerous bone marrow, means that it can, in 30-70% of cases, have long term effects. Though we're matched perfectly in terms of tissue, there are slight differences between my donor and my immune system still, so his white cells are attacking parts of my body; namely my skin, my muscles/nerves (the probably cause of the cramping) and my liver in a process called Chronic Graft versus Host Disease (cGVHD). 

The chronic nature of that disease, as well as the unexpected, yet all too real, surprise diseases that seem to come my way (a second seizing episode, my left eye being blinded, nearly followed by my right and another, completely different cancer appearing in my rib to name the most serious of those) has made it very frustrating for me, but also for everyone at home. 

I'm supposed to be getting better after all this. Getting back to real life and getting back to being me, right? But for the last few years, I've been unable to get back into study, unable to be independent for months on end (causing me, and my family grief); just unable to get into a constant rhythm as disease after disease and setback after setback came up. 

And somewhere in that time, we began to fight. Over HOW I was approaching my diseases and my life. And one key theme that keeps coming up - Why I won't believe in, and take any alternative medications or try any alternative things to treat, or at least ease my symptoms. It's not that I don't, I understand that many of our medicines came from traditional medicines, that these medicines and techniques may have an effect that hasn't been studied, or can't be studied using modern science, and often say that "I"m happy to try it. Just make sure it's safe and unobtrusive." But he tries to convince me, urges me to "believe in the medicines", and that they work. 

Wheat grass juice. One of the alternative medicines I tried while I was relapsing that failed to live up to its "miracle cure" status...

But I mean, I can't do that. I don't feel I need to. The mindset I used to overcome my whole disease in the first place relied on logic. I'd take a step back, take away all the doubts and fears with questions and analyse the options I had and take the one that seemed most promising. When I was diagnosed, that option was "Go forward, thinking and focusing on the present, what I could control, rather than the past." When I relapsed, and was told I had a tiny chance of survival, that I should consider palliative care, that option was "Look for anything and everything that could help in the literature. Analyse HOW they worked, so I could apply it to my case, and present it to my doctors convincingly, so they did do a second transplant", something only possible with a years' medical knowledge under my belt, something that's probably the reason I'm still here. 

I can't do the same with homeopathic drugs, which have never shown, in any trial, ever to have an effect, nor with meditation, herbs, tinctures or other things no-one really understands. He insists that I should look to others who have been helped by those methods - friends and family who have benefited, and copy their methods. But they haven't had the same disease at the same severity I had, most examples had no correlation with me whatsoever, and one guy who he'd gotten his "research" off for a fruit called soursop (which has been warned to cause peripheral neuropathy and 'Parkinson's like' symptoms, both things which are present in me, which could make the ALTERNATIVE MEDICINE the cause of my horrible cramps) doesn't even SEE most of his patients - he does them online... so he'd have no clue what issues I had. 

The other major point of contention is how I do TOO MUCH for others in my volunteering, blogging and charity activities... But first off... I feel I don't push myself too hard for others; I've realised and understood that to help others, first you need to be healthy yourself, second; that it's given me inlets to so many opportunities and meet so many amazing people, and finally; he doesn't understand that the purpose I've set myself, to try and do my all to help others, is THE THING THAT KEEPS ME GOING when the world seems bleak, when the pain is real, and when there seems nothing worth living for...

But it's the way that this has all been going... the time that it's taken for me to get back to "normal", the other, outside stressors that hang in the air that's made our discussions turn into arguments, turned our tones much more bitter and turned our friendship and mutual respect into begrudging acceptance that we have to co-exist, at times. We've both said horrible things to eachother. Things I wouldn't say to anyone... ever... I've said to him. He's screamed and shouted back things just as bad... 

Don't get me wrong, when things go wrong, he's still there for me, still there to help. The rib crisis a few weeks ago reminded me of that fact. 

But I'd stopped respecting him, his opinions and his thoughts over the last few weeks or months. Years, at some points, if I'm honest. He accuses me of being "egotistical", a "know it all" just like "my doctors". 

And to be honest... I have been. The way I treat my parents when they sit in on consultations with me, giving them irritated looks for asking "stupid" questions which are really just honest questions (I know if I was asked to comment on Dad's planning logistics operations, I'd draw a complete blank)... and they way I sneer, and throw death-stares at them when they bring up things infront of the doctor that made me feel foolish and less "doctorly"; alternative medicines or bad health habits I wanted concealed from them, is just obnoxious. The way I act these days when I dismiss Mum (a qualified, high achieving MBA at a high position in a multinational corporation)'s advice when it comes to starting up my own social enterprise to help charities and businesses alike make money; foolish. 

Our prides, something I don't have, or display much outside the family setting, get in the way, and and we end up butting heads over and over again. 

And in the end, it's only hurting us. Causing me to dismiss possibilities and options that may well relieve my cramping and other symptoms. Stopping us from being the good mates we are.

True. But they may still have effects we haven't been able to find yet... and at the very least... things like meditation, deep breathing and reducing meat consumption are just healthy.

So Dad... I'm sorry for being a jackass. An absolute arse and I'm sorry for not respecting you. Because YOU'VE brought me up to be the man with the values and attitude I have today. It's your belief, your teachings - "that you should leave this world in a better state than you left it in" that drives me. It's your philosophy, "that you should always smile at people. Because you never know whose rough day you just made" that I take with me everywhere; to enrich the lives of those around me, as well as mine. It's your sense of humour that compels me to add "that you could never express those sentiments this beautifully" (as your effective writing skills are nowhere near as good as mine. This bit is an inside joke I may share with you guys one day..)

This video I made about doctors needing to care about their patients more is embodied, essentially on your beliefs. Ones that are strikingly similar to great people like Patch Adams. 

I will try to be more accepting, more respectful, more patient with you and promise to take your advice and apply it at home (instead of just outside the confines of it, as I've been doing), and, as you say, "listen to anything said about you or your ideas without emotion or bias, for there may be wisdom, or an idea in there waiting for you to grab it". I'll listen to any advice you give me and take it to heart, and try to not let bitterness stop me from becoming a better person. Something you've taught me to do, and be. 

But one pearl of wisdom I've heard elsewhere is that often the ones that make us laugh the most are the saddest inside. 

One thing I also want to ask on this Father's day is, Are You Okay? It's not just because R U OK day is coming up this Thursday, but because for all the times you've asked me that question over the years, I've never asked you that back... I've forgotten to...

Maybe no-one has... 

The things you've said to us, the anger you release at times... it doesn't make sense. Once or twice... you seem to have hinted that you're hurting too. Something you don't like to show. 

You've had to watch a person you love go through hell and back. You've had to sit by silently and watch as doctors inserted needle after needle into me, while I lay strapped down in bed in ICU twice (perhaps more times, I can't really remember), watch in horror as my face, in your words, for I can't remember, "distorted, to the point where your right eye was where your mouth should be"; you've had to watch me wither away into this hobbling, pained creature as these cramps and my disease has gotten worse... YOU'VE been through hell and back... And I don't know how you've done it. 

I know you're strong, I know you've also gotten strength from my brother, and his reaction, as well as mine to this whole thing, but to you, and any man reading on who may think this way, it's not weak to admit, or wanna talk about how you're feeling. It's weak to hide it inside; it takes strength to put it out there, at first. But once you do, you're taking the first step to being a happier person. And when you put it that way... it doesn't make sense not to do it, if you are feeling that way. 
You may think you're strong enough, smart enough to do it on your own. But hell, if someone else could help you do it in half the time, you've just saved yourself more time to enjoy life as you want, and deserve to. 

If you do think talking about it may help - please do so. Find a good mate, someone older, someone who you respect, or someone you trust; or else find someone who you never have to see again who is obliged to keep everything you said to them a secret - a psychologist, perhaps to do it with. And if you, or any man is stuck for people to talk to - check out these guys who may be able to help: 

Australia: http://softenthefckup.com.au/
http://www.mensshed.org/home/.aspx
America: http://www.mentalhealthamerica.net/find-support-groups
International: https://www.beyondblue.org.au/resources/for-me/men/depression-in-men

Lifeline: (+61) 131114

Whatever you may or may not be going through - I'll always be here for you dad, as you've always been here for me. And we'll be together forever. Happy Father's day. Enjoy these moments!

Dad and I after chemo #1

Dad and I after finishing the Ride to Conquer Cancer

Dad and I about a week ago tearing up the party as usual!

Losing Independence and Feeling Like a Burden. But a Kind Gift's Gonna Get me Some of it Back.

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Cancer, as a young person, can affect your life in SOOO many more ways than people imagine. It's not just the brutal, life-threatening treatment that leaves scars, physically (pick any picture of me and you can see it), psychologically (I still get nightmares, that I'm back in hospital getting treatment, every now  and then) and emotionally (coping with the loss of your looks, physicality, and sometimes self is hard, especially when you're meant to be "at your peak); it's the little seen, but all too present loss of independence that can REALLY get to you. 

As a young adult, you're expected to live life "To the max", having started to come to grips with who you are as a person, you're expected to go out, stay in, explore the world and do things, pursue the dreams, and start to live the life you've envisioned for yourself... but when the long term effects of cancer stop you from doing that... it SUCKS. 

But what sucks more though is the fact that you have to rely on others to help you. Because another thing that's expected as you leave your teens and hit your 20s is that you go out and become your own man. Or woman. 

The last few months, as I've had those eye; let's call them "episodes" (1/10,000 complications happened in EACH of my eyes, a few months apart), as I've started further chemotherapy based treatment for the chronic graft versus host disease that lingers in my body, and as those awful cramps I keep talking about have gotten worse and worse, I've had to rely on others A LOT. My Mum, Dad and Brother, the most. But others too. 

I remember the day before I lost my left eye, I was cramping so bad that I needed a friend to escort me from the full lecture theater of concerned looking medical students (the dean herself was lecturing, and looking worried too), and look after me as my brother pulled up to take me home. I was thankful. As hell. Touched, at not only his, but also the whole's grade's obvious concern for my welfare. An amazing trait to see in a room full of people who are gonna be looking after our, and our children's well-being in the near future... 

It restored my faith in what I said here. That doctors DO care. And that they DO want to help others. But that sometimes... they feel they can't. And that's what gets them down.

But despite the gratitude I felt for that act, and despite the occasional kind comments and well wishes I get from people, often strangers, when I tell them my story, I can't help but feel... pity for myself every-time I have to lean on someone else's shoulder, or say those things. 

That self-pity can easily turn to self-loathing. 

Especially in the context of home. 

My parents and my brother are the most amazing people I know. They've not only looked after me, caught me when I fell (literally and figuratively) and on top of that, also looked to help others  (this amazing interview my mum did to let other carers know they're not alone was beautiful. You may not know this, but often, when people approach me through there, I "refer" mothers, fathers and other family members to her, and she gives them support) - they've kept me happy in these, the most frustrating times of my illness too. Which is just as important. 

When there's a party or an event on at uni, they usually offer to drive me. There, and back (no matter how late I end up home). When I went to Adelaide last year for a medical conference, and Canberra, just a week ago, for the International Youth Ag Summit, they called everyday, readied everything, picked me up from thousands of miles away - Dad, for last week's conference, actually took a week off work to stay and care for me. He did everything, from helping dress me (it's been hard to do that, with the recent rib-tumour surgery. Don't worry - I'm fine and recovering now), lugging around my bags and stuff, and being forced to stand inconspicuous, mostly bored in the background during lectures and breakouts, to make sure I was fine and could attend. 

And my poor, besotted brother is usually the one to pick up the slack. He's been tasked with taking me to poker games every night, often the only thing that takes my mind off things when I'm cramping really bad, the last few months where I couldn't drive. And he's had to do that, as well as all the other things; taking me to appointments, putting cream on my back, running after me and doing all the things I couldn't do normally for all those reasons, AT THE EXPENSE OF HIS SPARE TIME and holidays... At the expense of HIS youth. 

I'm grateful for all they do. But at the same time... they get frustrated. Over time, as their acts of kindness becomes expectations  for the boorish, annoying person that is me (I take them for granted and treat them like crap, WAY too much), they can't help but snap back at me. Or give me frustrated looks. And do those amazing things they do for me everyday begrudgingly. 

And I can't help but be frustrated by that either. 

I HATE the fact that I have to rely on them so much. I HATE the fact that I can't make all those things I want to; half the time because I'm not up to it, half because I can't bring myself to beg my family for a lift.  I HATE that when I look at the kids playing in the street, or when I see my friends posting pictures of their birthdays or trips overseas, or THAT when I JUST see other people WALK AROUND, MOVE FREELY AND PICK UP THINGS WITHOUT FEARING PAIN, I feel a surge of jealousy overcome me... 

I wish I could do all those things. I wish I could just be normal. I wish I could do thing myself... and not feel like a burden all the time. 

And I've felt this way for ages... As do many others struggling with things like this, or chronic illnesses or disabilities and even depression... my age, younger and older. 

   

But recently... one extremely kind act has changed that, just a tiny bit, for me. 

I recently got a message on my personal Facebook from a stranger. Not too uncommon an event due to this blog. But this was an offer to give me money. 

Now I've been offered money, gifts, even flights to America being paid for through this blog and through my speaking a few times now. I always tell them to donate it to a good, effective cause, one that helps the most people possible, or to donate to one of my own fundraisers, if I have one running, if they insist. And so far, they've acquiesced. But this lady kept insisting. 

What was touching about this though was the reason why she was insisting on ME having it.

Without me saying it, ever publicly before, without me having blogged or complained about it all... she'd somehow hit the nail right on the head. 

Her own words... Here they are. I "just noticed that you'd like to play poker and I wondered if I could offer you some cash for taxis to get you going independently. I figured the hardest part (well maybe not the hardest...) of being a tad sick is loosing the independence which you've just gained as a young adult so nobody need know In fact I propose you don't mention it and just take s bloody taxi" 


At that point in time, the week after being released from hospital after my surgery, that was probably the most frustrated I was feeling by this. I was otherwise healthy, I wasn't in any major pain, but I still needed help showering, putting on clothes, shoes; even getting up from bed and getting to the bathroom when those cramps came on. 

The humiliation was one thing. My parents, and brothers' frustration at me, and mine at them, another. Tension just builds around the home when someone's sick, and in our case, it was sky high, and my activities, my "running around after others' while you're still sick" and my freedom was being questioned and ground away into dust.

I was sick of it. But as touching as it was, I still wasn't going to take that gift. I do all this not for money but to help others. So I told her, after she insisted on giving it to ME for my personal use and personal use only, that if she REALLY wanted to help me, she should give it to my soon-to-come charity (a social enterprise I'm talking to a few people about and starting to develop that'll help charities gain a new source of income and help businesses out simultaneously... I'll post more about it later). 

But again, she admonished, "Nikhil, I'm probably your mums age so I'm going to have to pull rank here! You are not a charity. I give both time and money to politics and charity when I can and you are neither - you're a young man who should take a hearty offer to enjoy life and have fun with tiny help from someone offering who is happy to do so."

"Just be simple and un philosophical for the moment, push away boring old reason, humility and just take it!! Don't be shy or embarrassed. The only condition is its for you and it's for fun! I love that you play poker!"

"you should accept and should take whatever life throws your way... Just because you can! You of all people know it throws some shite... So a random stranger, eyes wide open offers you taxi cash, just take it." 

And you know what, after talking to her for a while, after learning more about her and her battles with disease, and her work with social enterprises too... I decided to do just that. 

She sent me the money just yesterday. And I'm gonna use it. For that reason only. All my poker winnings go to the Buywell Foundation (my charity's name) seed-fund anyway. Technically, she has given to my social enterprise. Technically, she has given me back some of my freedom, and technically, I am gonna be using it for poker. 

But in reality... she's allowed me to feel nearly normal and free again. 

And that's EVERYTHING. 

She's insisted this remain anonymous. And it will. It wasn't a HUGE amount - don't worry, I'm not gonna be heading off to Vegas for a weekend of debauchery anytime soon (unless I win big of course... though to be honest... I'd chuck it all in the bank and build up that charity-cum-company anyways). 

But one thing I've also realised is that TECHNICALLY.... I'm being payed to play poker now. 

So TECHNICALLY... I'm a Pro! 

Hahaha - I'll keep you updated on my progress, on if my current $4000 "career" poker earnings go up significantly... but the way I play, just for fun, in low stakes games, her donation should last me months. And hopefully by then, the medications will have kicked in, I'll be over my cramps, and back to being me. 

What will last forever though is my appreciation for her keen sense of understanding. 

And the knowledge that others in the world DO GET IT. 

Being sick, or sad sucks. But if you feel like you're a burden too, it sucks even more. 

Hopefully this allows you guys reading on to understand that, and be more aware that others in your life may feel that way. Or that you're not alone if you yourself do. One thing I've also realised from all this, the weeks of tension that's lingered in my home, is that they wouldn't be doing all this for me if they didn't love me. 

Caring is the physical embodiment of that love, and I thank everyone who's ever shown me that care in my life because it's made me the man I am today. 

Now before you guys who wanted to donate before go off in a hurry and use this as a way to get me to accept gifts... again thank you SO much but honestly... I'll be fine! You save up that money and donate it when the kickstarter for Buywell comes out; 'cause when it does... it'll go HUGE. And I truly believe, and want it to make the WORLD a better place. 

An Open Letter to Doctors from a Scared Patient in Scared Times.The Best Doctors I've had. And the Worst.

 Last post:                                     My Story:                                         Next One

Being a patient isn't easy. Especially when you're in hospital in an emergency situation, as I was last week... For those who didn't know - I presented to emergency last week, midway through chemo, with shortness of breath and they ended up finding a new cancer on my fourth rib on the right. Don't worry though - I'm fine! 

They removed the lesion that was there and the worst case scenario - a relapse of my very aggressive original disease - Acute Myeloid Leukaemia - in the bone has been essentially ruled out and being localised (there are no other areas of my body with this kind of look on scans), whatever the tumour is, that'll likely be all that's required in terms of treatment. 

During that tumultuous week, my first where I'd gotten major surgery come to think of it, I probably met as many doctors as I had since being diagnosed 4 years ago. I definitely would have if you took out med students, interns and residents from the equation and just left the specialists. I met 12 anesthetists alone. By the time you're reading this... I'd probably have met 14.

And over this last pressure-filled week, I've had some of the best and worst experiences with my doctors. 

But let's save the best for last... 

I'd like to say first that these doctors I've been under - I don't believe are bad doctors. Skill and knowledge wise, they're far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. And they're not horrible people either - I've come across worse, more abrasive doctors in my time, heard of many more horrible experiences, circumstances, rebukes from doctors and regular people to young cancer patients in particular - I probably came across these guys at bad times, in time-constrained circumstances or something of the like. 

But that still doesn't ease the pain, or worry I felt because of them...

Luckily, I'm a person who can cope with that anxiety well. But not everyone can. So at the very least... for those doctors, future doctors, nurses or other healthcare staff reading on - this can serve as a lesson. 

When I was told I had a lesion on my fourth rib - one that may be cancerous, as you can imagine, I wanted to see exactly what it was. Or at least learn more about it. 

I was admitted to hospital on Tuesday morning, and found out about this lesion that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year - I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible. 

After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to seeing the report... he couldn't give it, as "Only a specialist could give such reports to patients, according to New South Wales Policy." I was pissed. Angry,,, beyond words... They were my scans... my reports... about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn't it be the other way around?

But I guess it wasn't his fault. And I guess I could see a potential reason for such a policy. You wouldn't want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance.... Fair enough. 

"Could you call or page my specialist so I could see them?" 

No. That was for some reason or the other impossible too... He was probably scared of bothering him for this tiny thing. The systemic bullying, and even sexual harassment that came with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn't him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn't in the office and couldn't answer), calling my GP (who's amazing and has helped me often in crisis situations in the past) and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do. 

Eventually, I resigned myself to waiting 'til tomorrow, for my consultants' usual Wednesday "Grand Round", where he and those under him would review all patients under their care for the report. 

And the next morning, I got an absolute 'Yes. Of course you can see your reports" from him. 

Great, right?!

That's when I met annoying doctor number 1. The senior registrar (the level just under consultant) under my consultant was busy. I could understand that. She may have had a few long cases, or emergencies under her belt. 

But for two whole days, two painstaking days of me asking her, the residents under her, my nurses, my doctors and my consultant again on the phone again and again, I didn't get to see that report. I didn't know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned there for it! 

All I had to work off in this time were off remarks from my haematologist about a "lesion on the anterolateral aspect of the fourth rib" that radiologists suspected was a "chondrosarcoma" that the orthopedists (bone surgeons) recommended required me to go straight to "a rib resection" rather than a biopsy first. Words I could luckily grasp and understand, with my medical knowledge, but ones that would have left most other already anxious, suffering patients even more distressed. 

When we asked her why the reports hadn't been disclosed thus far, by anyone else, including the anaesthetists, orthopedists or the pain team who'd all been by by that point on her own rounds (which can happen at anytime in the day by the way - they often catch you when you least expect it, one after the other) later that day, she responded, brashly, dismissively even, to my obviously anxious mother, that "It's because we're the haem team." before brushing on to the next question, failing to even acknowledge our plight.

 After a rushed consultation (we were her last patient of the day, and we'd seen her laughing alongside colleagues later on; so she wasn't rushed by other patients), a non-commital "Yeah, we'll get on to it," and a "hmph" and a small turn, she was out of the room, leaving us even more confused than when she entered.

The next day, early, before 7am (breakfast is served at absurdly early hours at St Vincent's), we had more of the same. And it was only after cornering my haematology consultant onthe phone that we finally had the original resident, who'd initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5am Friday, the hour at which hospitals, for all intents and purposes, close. 

Now I understand that doctors are busy. I understand that they don't always have time, that they may have emergency situations and that they have a LOT of work to do. I understand that some patients are placed on higher priorities than others; indeed, rather than get angry, I'm a patient who's grateful if he's seen last, as that means I'm probably most well off, medically.

But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather... veterans like me get scared and anxious too. 

The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the less likely, yet all-too-possibly correct tests aren't done. Because in addition to my not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often, after they ruled out most of my major causes of shortness of breath, that it wasn't even done until I specifically reminded the team about it. They'd simply forgotten. 
The chances of there being a pericardial effusion causing that (they ultimately ended up pinning that initial shortness of breath that brought me in to my cramping as all the other tests came back negative) initial haggard breathing was unlikely, the chances of it being severe minimal considering my lack of the Beck's triad of dangerous clinical signs. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face considering the fact I was getting major surgery in the chest later that week. 

I understand there may not be time to answer everyone's tiny little questions, or to grant every little request. I understand that there are days where you may be overwhelmed, where the concerns of a pushy family whose child has what's likely a slightly cold seem irrelevant next to your failure to resuscitate a young man after an accident. I know you're human, and can't do everything...

But you don't need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those "less urgent" concerns somewhere - maybe even design a symbol or mark to distinguish them from the rest of your notes - and try to get back to them later when you get a chance because believe me - it's not just your patients who benefit from this - it's you too. The small things can make the biggest difference to a patient going through what's often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life... then your own life will be the richest of anyone's in the world. 

Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too. 

I've dished out a lot of dirt now... and this is just annoying Doctor #1. I could go into Doctor Annoying Number 2 into extravagent detail; and some of the words, some of the things I've faced from doctors in the past, I could go on for pages about; but I feel I've done enough of that for now. Suffice to say the phrase "typical Surgeon" could do Annoying #2 justice... you may just hear the goss on him later if he happens to do something else very alarming today.... but I understand how he can be very busy too. 

But though I've had many bad experiences with doctors at various stages, in various circumstances, in the past, I've been lucky enough to have most of my experiences with doctors positive in nature. 

The words that changed my life were uttered from my first haematology doctor's mouth, the conversations we've had over things ranging from life-and-death decisions, the future of medicine and treatments, to exchanges of fishing tales and adventures tantalisingly human in nature. The confidence my transplant specialist had in me to choose the medication that's kept me alive today and then fight for my right to get it completely subsidized came down to an email exchange between him and I that he was happy to facilitate in his own time. 

I've been blessed with not only the best parents, siblings, nurses, staff and friends in the word, but also some of the best doctors too. 

But by far the most human of these has been my opthalmologist; my eye doctor, and my first doctor, who'll always have a special place in my heart. 

That ophthalmologist though, she showed just how amazing she was in this last tumultuous week too. 

My eyes, as most of you regular readers would know, have gone through a lot in the last half year or so. I've lost almost all my vision in my left eye permanently to a "central retinal venous occlusion", whose cause we still don't know and then, just over 3 months after that, almost lost my right eye as well to the same reason. 

My reflections... my feelings as I went through what I felt may well have been the last time I saw anything.

During this second time in particular, as I was rushed to the hospital, experiencing the same things as I did the first time, seeing the same results from the same tests coming back, I was in one of the most sullen moods of my life. I knew what was coming. And I knew that there wasn't must we could do to change the results of it. All I could do was sit there and wait for what could have been the last flashes of lights I'd ever see go by in this alien, dreary waiting room. 

Yet when I called Claire during that time... she showed nothing but concern and care for my welfare. Me. Just one of who knows how many patients she had she showed love and concern for where she had every right to be peeved, pissed off and even violated for being called up at 5am with information of this going on. 

During that crisis itself, and in the weeks following up, she was her usual amazing self. Luckily, the vein blockage that caused my left eye to go blind had cleared for some unknown reason and I hadn't lost both my eyes. And in the weeks following, she was happy to see me every week during this time, and even offered and decided to see me for free in this period. 

Every appointment, as usual, we'd discuss the findings as she saw them, and she did more than explain the goings-ons of my eye to me as the details emerged on the screen, she made sure mum and I both could see the differences; the changes in the scans, actively involving us in the process and making us feel like we had control of the situation. Something many, if not most patients, wish they had in their interactions with doctors. Something that's indeed, been linked with better outcomes and survival times in diseases ranging from colds to kidney failure to advanced cancers. 

We couldn't thank her enough for what she'd done for us in those last few weeks/months. She'd transformed this tragedy that would have stayed with me for life into one of the most inspirational experiences of my life. And we thanked her in kind by giving her a pair of gold bauble-style ear-rings; a wedding present to her (she'd recently been engaged we found out from another patient of hers), as during her eye examinations, she always had me look at her earrings, and I always made sure to point out the style she'd chosen to wear on the day (she always picked quirky and extravagent ones to "give her patients something to look at). 

We gave that to her a month ago, looking forward to my next 6 weekly appointment. 

But somehow, during the crisis that was last week, she got wind that I had yet another cancer. And when I saw her face in my window the day I'd gotten my bone scans (indeed, she was the one who deciphered them for me, and let me know that they confirmed it was another cancer I had), I was shocked. I couldn't believe it at first. But there she was, the earrings we'd gotten her glimmering in the light, smile bright as ever, beaming at me, with flowers in hand. 

"How come you're here? How did you know what was up?"

"I'd heard about this happen, and I wasn't far away. I live right in the middle of Sydney, really, so it wasn't that hard to pop in." she exclaimed cheerily, handing me a set of fake flowers and then taking them from my hands, still limp from disbelief and organising them on my noticeboard of cards and encouragement with my similarly awed mother. 

I was astounded. I know personally the amount my doctors, my two haematologists leading my treatment, cared for me, as they cared for any of their patients from deep conversations with them about treatment and just life. But even THEY hadn't gone this far to show their concern. Now that I think of it though... I do remember my first doctor, the one who'd told me those words, "The Good news is you're 17 and you have leukaemia, but the bad news is... you're 17... and you have leukaemia," walking in shyly to see me and wish me well before one of my procedures at a completely different hospital, on his day off, one day. He played it off cool... but he was there to specifically see and talk to me...

The generousity of these souls... their sheer care for the people who'd been thrust into their hands damaged and sick and their nurturing huamnity to bring us back to health... was just staggering. 

That sort of care these 2 amazing souls had didn't just extend to me though. My first Haematologist told me his code one day in a candid moment. He treats "Every single person as if they're his father, brother, son, or uncle". And the way he treats them backs this up. He goes to every extent, doesn't care if he steps on toes or upsets people; he's renowned for giving tongue-lashings to clerical staff who wouldn't budge on red tape, and every time you're in serious trouble, you're glad to have him there because, if you needed it most, he'd ensure you got that CT scan, MRI or procedure done, no matter what others would say. 

People call him eccentric, difficult to work with, rude even. But my Dad saw him immediately for what he really is. "The other day, before your first chemo, I came across him in the hallway and asked 'Doing anything this weekend, doctor?' attempting to make small talk. He just stared off into the distance and walked off the other way. And I wasn't offended at all." 

"Why," I asked. I'd only just met him for the first time the other week, he'd only just told me those words that were going to change my life and I hadn't processed them for their real meaning yet. To me, he was an eccentric, off-putting doctor who had, in my own words, "No people skills."

"Because I know that the reason he did that was because he was busy thinking about a problem he had with another patient. And that patient in his mind may have well been you. With that in mind... Who do you want treating you?" 

Claire, my opthalmologist, displays the same level of compassion and care for ALL of her patients too, I know, through this enlightening chat we had with another of her patients at during last visit. She was carrying a bunch of flowers, the same variety, I'm realising now, as the one's hanging on my noticeboard in this room, and my father made a remark on the arrangement. 

"Yes, they are pretty aren't they?" the old lady smiled. "Claire got them for me, bless her. My son had died this month 20 years ago, and I mentioned that I was planning on visiting his grave to her during my last check-up last year. The dear soul remembered... Bless her." she sighed, wiping off a tear...

It's no wonder she always talks about being blessed and having the most adorable patients ever, "a veritable gang of second grandmas" as she puts it... 

The humanity of that action... the sheer compassion and thought it showed... goddamnit... 

THAT'S the kind of doctor I wanna be. 

Hell... that's the kind of HUMAN I want to be!

Random acts of kindness have the power to change lives. I've said it many times before... but these guys transcend that and make every action as good as possible. It's bloody amazing, and I'm honoured to be affiliated with souls like this, and one day, aspire to be someone just like this.

An ED doctor pictured crying after losing a 19 year old patient. Doctors often seem like they don't care, that theyre emotionless. In truth, they're often just better at bottling it up than most. Read this amazing Reddit thread filled with people's own experiences here

I know it's hard to display this level of care and compassion everyday, for everyone during every circumstance too. But I know one thing as well... it's bloody worth it. And I'll definitely try to be as good a person, as well as a doctor, as I can be for everyone... forever. 

But for you doctors, medical professionals; just ANYONE reading this, you don't have to feel the pain, or the worry of getting a cancer to understand this. You don't have to experience it first hand, as many doctors, such as these, end up doing before they themselves decide to write an inspiring article and change the way they practice. Hopefully reading this will make sure you don't have to do that one at the very least... You don't have to examine or read through textbooks and journal articles to find out how you should deal with your patients. All you've gotta do is Just Be Human. Just be nice... And if you can spread that humanity in a place, at a time at someone's life where there doesn't seem to be much going around - you WILL Change Lives. You WILL make a difference. And if you're ever struggling to find meaning in your life - be you a doctor or not - these acts will change YOUR life too.