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.
And by god he did that part of his job well.
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.
A typically crass, typically DAD joke, in a typically awkward situation.
But that one joke eased that tension, and amazingly... it made me smile.
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.
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.
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
Posted by Nikhil Autar on Monday, 9 September 2013
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
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.
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
But of course, not all these moments were flashy. He's not well known for sharing, both on the plate and on the boat.
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.
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.
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.
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:
Lifeline: (+61) 131114