How it Feels to Have a Chronic Illness. And How to Explain it to Normal People.

Last post:                                     My Story:                                         Next One

 "How are you going these days Nikhil?" 

It'd been literally half a year since I'd seen this group of friends - my med student buddies - and I had to do the rounds. This question came up a lot. And almost always, it was about my health. 

"So yeah I'm actually good!" I'd always start, smiling and gesturing wildly so as not to worry anyone. "In fact, my cancer's at a point now where it can't come back!" And to this, I'd get an emphatic 'Congratulations!', a shout of yipee and a toast and the occasional pat on the back (*wince* - I have some healing wounds there that aren't getting better fast...). 

"But yeah otherwise, treatment for the graft versus host disease continues. And I mean though the skin is slowly getting better, the major thing left is the cramping, which can suck." The faces become more sallow as I say this. "But hey, they're getting better too!" I lied, and again they'd celebrate, albeit slightly less enthusiastically. 

Hey! What could I tell them? How could I explain to them the truth of how it affects every single aspect of my life. Even in this crowd of young, caring people, there was no easy way of really telling them what it really meant...

 

I don't think people really know how much this can affect me...
Me getting up for the 10th time or something some night. Mum filmed it 'cause they kept me from sleeping for so long, we thought we may have to show it to the doctors ASAP.

And after a while... explaining it over and over again takes too much effort. Hence this post.

I guess you could argue that it's hard to really talk about anything over the insane amounts of decibels that blast through a nightclub's speaker. I guess you could say that lambasting about the constant frustration and the looming anxiety of something you can't control for half an hour would break the social convention of small talk. But in truth, now that I think about, there really isn't an easy way to explain how it really impacts your mindset, a chronic condition. 

Because unlike what most think, that frustration, that anxiety, the physical effects of a chronic illness - that's only half the impact. Chronic diseases, mental illnesses, even things like stress affect our very mindset, they play a factor in every tiny decision we make and it was only after reading this amazing article/blog post that I feel I'm properly able to explain that now. 

It's only half the pain... but that pain can be significant.

It's called the spoon theory, and the concept is brilliant and encapsulates everything there is about having such an illness. 

Picture yourself having to walk around all day with 12, and only 12, spoons. Each little action you take - you get one confiscated. I know it's in-feasible to have someone follow you around all day, and I know that handing one in may be conceived to be another action that requires another spoon that ends up in an infinite loop leaving you with no spoons, and that there may be all kinds of other particulars that may make this nonfunctional... Hey, I said it was a great analogy. Not a perfect one. 

I digress. Now... where were we? 

Every single action.

Waking up and hopping out of bed? That'll be one spoon.

Finding the will to get up and brush your teeth. One more. 

Doing other... business... in the bathroom and then showering. Another one.

Putting on your clothes, eating breakfast and going out for the day's business. 2 more please. 

We've only just left the house, and we're down 5 or 6 spoons! 

You may think I'm exaggerating, but that's life for so many people. People with cystic fibrosis, people with heart failure or latent blood cancers, people with horrible cramps like me will find some, most, even all of those tasks tiring. Right now, I'm scared of even getting up from a seated/lying position after 5pm, in fear of my whole body having EVERY SINGLE muscle contract at once (from my legs to my abs, to even my neck), leaving me dazed and staggering, doubly terrifying if I'm trying to get up steps (I've fallen twice already, which may have caused soft tissue damage in my knee) - even gasping wildly for breath (getting up and staggering to the car was what took me in to hospital the night before I found out I had another tumour growing on my rib). 

 

Me a few weeks ago. Facebook usually isn't somewhere you post your down moments. The image of themselves as successful, happy people that people like to portray, combined with life highlights usually drowns out moments or cries out to nobody like these. I guess I'm lucky to have some friends who saw and cared to ask.

People going through severe depression find getting out of bed to be impossible. It's too painstakingly hard to face the day or the world for some, too lonely for others - it's unsurprising that it makes no sense to many - and leaving that first confine costs them significantly more than 1 spoon. 

Now imagine the feeling of having to give that spoon up. Each. And. Every. Task. You. Do. And imagine having to account for and plan out everything around not only your medications and appointments over the days/weeks/months to come, but also for how many "spoons" you have left. Yes... sometimes you can have a "feel" for things and plan accordingly... But remember, often your condition can be unpredictable... leaving you caught with even less. 

And imagine having to pass up on doing things that are good for your career, good for you, or the things you love because you simply don't have, or can't afford the energy to do so.

So, where were we? Ahh that's right... The rest of the day. 

So when you get through the day's work or study, with travel, dealing with setbacks, explaining things like this to people and - could you imagine - kids... you're left staggering around with 1 spoon.  If you're lucky. 

And if you're lucky enough to have the will, or else prop yourself up by speaking motivational nothings to yourself (or by taking heavy amounts of Beroccas or even stronger stuff) and manage to head out the door to "enjoy" yourself as I did that night, you'll pay for it by having a semi (if that) rewarding night and by being forced to watch on jealously as "normal" people enjoy things like dancing, drinking and eating (don't forget, the physical restrictions ALWAYS stay with us) and even walking without a worry. And if you wear yourself out too much - you'll pay by having a few less spoons to use the next day. That's if you haven't worn yourself out already before you've even had the choice to go and have fun.

Because yes - you DO pay if you go over the limit. Harshly.

And no... you don't get a break from it.

Ever.

For some... especially those who are poor (it's hard to get extra qualifications or backing for your business, or even a job in the first place with this on your record) this can become a cycle that just continues on and on.

This thing looms over you, and drains you, in all ways, forever. And I may complain about it - I, hell, anyone with any such draining condition (no matter how "petty" or "whiny" it may seem) have the right to do so no matter what - but there are so many people who have it worse. 

I have the benefit of having a year off from studies, so I can, when I'm well enough, accomplish other things despite this. I also have a family, all amazing people, who care for me and do everything - from fixing me meals and taking me to appointments, to dragging me to my bed (which actually happened after that party 2 nights ago as my muscles were drained from enjoying myself and dancing for a few minutes) when I need them to. I'm still young and can look forward to a potential future without this. So many people DON'T have that luxury. 

Imagine being blind and having to rely on that carer, or services that may, or may not exist, all the time. Imagine having inflammatory bowel disease or some form of incontinence that means you have to rush to the bathroom (which you always have to be aware of, not just because of the embarrassment this could cause, but actually be aware of if they're close) at any second of the day. Imagine being a carer for someone with that illness and having to not only watch on helplessly as your loved ones struggle to juggle their spoons, but have to take on their spoons yourself - as you work 2 or 3 jobs to cover the bills, or give up YOUR happiness to do so... as my brother often has to. 

Imagine having had this your whole life, and knowing that this may well take your life, as people with cystic fibrosis and other chronic, right-now-deemed-terminal illnesses do.

It's scary. I know. 

But as the lady who invented this spoon theory said in her original post... this can also be seen as "a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons”. And if you're lucky enough to have a friend or family member or patient who does have such an illness... if they're with you... remember that they "chose to spend this time with YOU." 

I hope this gives you a glimpse of life as a chronic patient. 

I hope this allows you to forgive "misgrievances" anyone with an illness may have committed - whether it be them having to bail at the last moment on a meeting, skipping or else refusing to take medications because they honestly forgot or are sick of taking them, or them just simply pouring their heart out and letting people know what it feels... I've seen so many people cry things like "Bullshit!" and "Pussy!" when people "whine" about things like this.

Remember - these things take a huge emotional toll too (my experiences with it. And how I deal with that).  It's not easy hearing "you look good", or "you look better" when you feel like the complete opposite. It's not easy having to explain everything, often lying about your health just to make others happy too. The frustration of this thing never leaves you too...

And finally, I hope this let's you understand those people in your lives who do have extra issues always looming over them. And I hope this urges you to go and ask them if they're OK, and equips you to maybe help them. 

Because who knows. Someone you love, or someone you care or are caring for may need your help.

A Great Surprise from Great Friends! Things like that are what you need sometimes...

Last post:                                     My Story:                                         Next One

So I was at home, very tired, as I went on a fishing trip yesterday on the boat (it was great, even though I ended up cramping for the rest of the day =P I'm not at my best and it was a 6am start!), but I had to go somewhere - hospital, not as a patient, but to meet  a friend actually.

And god... I couldn't be stuffed... And it probably wasn't healthy. But I'd made a promise. And I knew I'd actually have a good time. So I was texting a friend, ready to go, when Mum came in. She'd had a day off, and was eating food when she saw me getting up.

"No Nikhil, take it easy today." she said through a mouthful, rushing to sit in the chair beside my bed. "It's my day off today, stay home with me. C'mon, Nirav's making lamb curry too! Oh, and you had a big day yesterday, you need to rest."

"Jeez mum, I gotta go!" I said, dragging myself up, shoulders slumped. I wasn't feeling my best but I had made a promise. 

After a bit more insisting though, she lured me into conversation, urging me to stay, annoyingly, inbetween topics, and eventually, I gave up and texted the friend saying "I'll catch you next week!" before slumping back into bed, muttering under my breath about how annoying it was to have such a clingy mum...

Then I heard the door open. And a few voices. 
Odd... Dad had just left for Melbourne for a family function. Nirav, my bro, he wouldn't have gone out... he was midway through cooking...

Then Nirav himself popped into the room, too soon after the groan of the front door (he couldn't have gotten up that quick surely), absently checking in, a slight smile on his face for some reason.... 
It was clear, at least, that someone was home...

And then these guys popped in, handing me this mysterious bag - a gift - and I couldn't stop smiling!

It was my basketball buddies! Since high school (I got sick in the last year of it), it was hard to catch up with anyone - we were so far away, broken up and separated, in the new friend groups we'd developed at Uni and Work. 

But a tradition had begun, and I'd joined in on it, of always catching up and playing basketball for HOURS on end in our mid-semester breaks. And it was glorious! The best times of high school came back in those few hours, where our less fit versions of our young selves tried to resurrect our mostly lost talent.

The last few ones though I'd missed. You know... things like a third cancer popping up outta nowhere and nearly going blind tend to impede my perfect jump shot and awe-inspiring dunks... 

I REALLY wanted to go! But I knew I couldn't, so I'd always post "Sooon!" or "Devos!" when that notification came up on Facebook...

But hey! They'd brought it to me this time! And they'd also gotten me the perfect gift!

A PERSONALLY SIGNED Steph Curry (the MVP of the NBA this year, possible/probable contender for the greatest shooter EVER) Jersey!! 

Not by Steph Curry... by my basketball buddies. but hey, I'll take what I can get =P 

The gift was perfect not only because my raw shooting talent and touch at the 3 point line has been compared with some of the greats, but because Nirav was making them, lamb curry (watching Jerry - the strapping lad on the right - barely gulp it down, even with 10 spoons of yoghurt after that, and sweat from the heat was classic!), because I loved the way the team played and most importantly - because the Number - 30 - represented something amazing!

It took my a while to guess why. They kept urging me to anyway... 

"Is that Shaquille O'Neal's number?" When I was in year 7, I'd had my growth spurt before the other kids, and was, let's say, "well rounded", so I had the nickname Shaq on the court. Maybe that was it.  

"My scoring average?"

"How many girls I'd been with?" (to which I had multiple scoffs, and cries of "Bullshit!") 

The actual answer took me a while. But with a few hints, I'd got it. 

It was 3 - 0. My Record against Cancer. 

Bloody awesome! A LOT more symbolic than this other gift I'd gotten from mates during chemo... And sooooo cool of them! I'm still smiling as I write this.

I'll keep it forever, that's for sure - never to be washed again, to keep their signatures on. I know they're shaking their heads as they read this (I used to always be known as the guy who sweated so much he could slip between players, so an unwashed shirt would be POISONOUS almost I'd say)... it's just how I roll Haha!

There's another awesome aspect to this gift though.... They'd been planning this for the last few months. Some of you who follow my Facebook page may know that I was in hospital during my birthday... again (I've also spent my 18th in hospital, alone almost) and that despite the suckiness, a few acts of kindness made it an amazing day... Especially ones like this.

 (do click and read it - the full post is here. My nurses gift to me as soon as it hit 12, straight after I'd mused about how sucky it was to be stuck there on the day. This, and a shot of morphine for post surgery pain. What more could you want?)

These boys had actually planned this surprise for me then! But circumstances had stopped either me from being there, or them being available. 

And today was the perfect day. Not only because I was missing out on some of the best fun that was our quarterly basketball meet-up - but because there's been tension going on at home for a bit too... 

It's hard being a chronic patient... I've talked about that a lot. But it's just as hard - if not harder - being the carer of one. "They're the ones that have to be stronger than the patient, to hold them." as my mum said, perfectly. Which is hard to do when you're feeling helpless as your loved ones go through pain...

And the last few weeks especially have been especially painful. The cramps that have plagued me for the last year and a half have come back with a vengeance after one of my treatments (Ironically, that treatment is supposed to take away the cramps... Hopefully in the long term...) started. I had 2 doses before the surgery in August, and 2 doses afterwards. And each time... the cramps had gotten ten times worse after them! The next few days after a dose, I'd LITERALLY cramped 24/7... I didn't get any sleep then. Even now, every time I get up, I cramp, and new areas are involved, like my neck, and possibly even my esophagus, close to my windpipe. So I'm not only cramping, I feel like I'm choking too... 

In this time, I've often reverted back to the level of a baby again. I'd scream out "WATER!" and someone would have to get it (I couldn't get out of bed - hell - I couldn't even roll over and sip it half the time. I have a pack of straws handy by my bed), "MEDS!" and they'd sort through the pile of them on my desk and give them to me, "FOOD!" as I found myself hungry, at the oddest hours, and unable to get it...

And they'd be there. Everytime. Sometimes after a bit because they were busy (or in the case of my brother, playing games, which I'd scream at him for afterwards, as it'd often leave me no option but to hobble over, crouched in pain, to get what I needed)... but they'd not JUST be there, they'd do awesome stuff like this today to keep me HAPPY too!

It's the other stuff though... the driving me to poker (the one and only thing that gets those annoying cramps off my mind), to dropping me to occasional adventures with friends, the annoying "Get the remote!", "Find my phone!" and, the too-usual "Can you find my <insert item here>", NOW please!" - that they were understandably frustrated about. 

But they didn't get that I was frustrated too. That these things - I needed them to not just feel normal, but BE SANE. That I WAS giving up things - I could've gone to hundreds more parties, events, games in that time frame but I didn't to keep them happy, or because I was afraid of their annoyed reaction. And they don't realise how crappy it feels to see that begrudged, annoyed face when you're in pain, thrashing around in bed; when you NEED someone to help... and they hate always being the one to do it.  

They've said some horrible stuff to me. And I've said horrible stuff back. I've screamed at them... too many times.. and it happens over and over again, as the annoying disease (graft versus host disease) beneath all this threaten to bubble up and burst in our faces week on week, month on month, year on year... 

But it was THEM - as well as my friends - who made this happen. They kept it secret for a good 2 months, planned for it to happen on multiple days, only to have it knocked back because something came up, and made it happen today... after we had a HUGE fight last night. 

Many people... possibly even me, would stay angry, cut the cord on something awesome like this, even HATE someone after that exchange. But not this awesome breed of people... not my awesome carers. 

I take them for granted, and keep being horrible WAY too much. But I'm changing... slowly but surely, things I outlined here... and I'm also resolving to keep doing that - and take the next step. Not lean on them for those extra things like poker nights and parties. Maybe I'd miss out on some, and be trapped at home... but hey! In the end I, my thoughts, my mind, determine whether I'm happy or not. And, as I always say - there's always 2 ways of looking at things. 

Missing those things will give me time to work on better stuff! Like this. 

But all in all... I'd like to say thanks. Not just to Jerry, Eric, Adrien (the boys in the photo), Lucas, Harry, Tony, Nick and Michael (the ones who signed and chipped in for the jersey itself!) - but also Mum, Dad and the Bro for doing this to make me happy. Even though sometimes, I don't deserve it.

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

Last post:                                     My Story:                                         Next One

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!