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

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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.

Pain and Suicide.

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 Anyone who's ever had a cramp knows that whenever you have one, you think of nothing else but "When will this end??"
Well, I've been getting them for the last 8months now. They've been happening every day, everywhere and they happen for no reason we can find out whatsoever. 

Sometimes they go on for hours. Usually, I can't even stretch or walk them out; they happen in my abs, which I just have to bear as there's no way I could stretch them, or on opposing muscles simultaneously... Stretching one side's cramps out makes the other side's worse. Often, they happen while I'm sleeping... Every second night, I wake up, screaming, writhing in pain until I can untangle myself from my blanket and bear it out. 

Sometimes I wake up my family with those screams.

Nothing has helped. My doctors don't have a clue. I've tried literally everything. Electrolytes - I drink them every day, every night. Regular stretching, cutting out certain spices/vitamins, every medication; alternative and proven, exercise (I was going through them while I trained up for and did my 200km bikeride too - the feeling of having a calf muscle cramp-up while you're riding down a hill at over 70km/h is terrifying beyond anything you can ever experience).... but NOTHING WORKS!

I can't even begin to express how bad these last few months in particular have been!

Every minute of every day I know they're coming... Every time I even move my foot in bed, or reach for the remote, or get up from a chair, I dread the writhing hot, burning pain that is bound to ignite.





But the last 3 or 4 days... it's gotten even worse. 

I'm writing this now at 5a.m. I tried going to bed at 11:30 last night, before the cramping started. I've managed to get into 1 cycle of deep sleep, but woke up from that mid-way.

I was barely able to open my eyes as I stumbled around the house, slamming the walls with my hands, trying to stretch out my burning fingers that are curling up like a dying spider against my will.

That was an hour ago and after slumping back wearily into bed after my hands and quads finally stopped spasming, I've woken up again twice, only to have my abs, and then my calves and shoulders start burning up. 

I'm typing this out 1 key at a time, massaging hands that are aching, threatening to start spasming again...

This FUCKING. SUCKS!

EVERYTHING I DO, I DO FEARING WHAT MAY COME...

I may seem like I'm in control and happy all the time. though I don't let it affect my overall outlook and still can, and do, smile, and enjoy everything I can, EVERY. DAY is a struggle. 
There have been a few times, over the last year or two in particular, where I've wondered... "why do I even bother? I mean, it'd be so much easier if I... slipped away..."


When you've been living for as long as I have not being able to remember the last day you weren't in pain, able to count the last good sleeps you've had in the last year on your fingers; wondering, and in awe, at the energy everyone else seems to have, at age 21, you can't help but wonder those things every now and again... 

This is the life of someone with a chronic illness... or someone who lives with chronic fatigue.

But though I've wondered and thought about it; at one point, when I was hallucinating (due to a near-fatal toxicity from a drug), in so much pain and out of control I even screamed at my nurses and my own mother to euthanize me... I've always, during those rough patches, remembered these few things.

First - that pain, which I've been forced to go through so much of over the last few years - it's temporary. 
Though it sucks... it's finite and has an end. What usually hurts us more than any neurological response of the firing of some nocioceptors is the emotional toll that fear of that pain puts on us. In the end... when you take a step back and think about it, how it affects us is something that WE control. So why should I let it hurt me more than it should? (how I do that, and how you can if you feel the same way - I talk about here).

Second - I remember the words of my doctor. When I asked him about what he thought of euthanasia (it wasn't prompted by an ideation of mine, I was just interested on his opinion one consultation), he told me "I've had a few patients who've come in asking if they could end it. But most, in a few weeks, come back shocked that they could even think such a thing."
Pain is horrible. Something that bad, it's only natural that it can affect our judgement. But pain, especially that associated with treatment, or recovery, it does end... and once you're free from it - life becomes a much brighter, nicer place.

But when it's chronic pain, something that seems to, or may well go on forever... when you feel like there's no end to this, that this pain will keep coming back, over and over (as it may well do for my cramps); that can be even more disheartening than even the horrible trauma that chemos, pleural biopsies or the worst pain imaginable may bring on.

But in the end... if you, now, in the future, or anyone you know is going through that... remember this third thing.

That though it does suck while it goes on, and though it may impair, or affect us, there are still so many good things worth living for. And that there are still so many things we can still do, despite it.

This is how I get by, and somehow, often manage to be happy despite all the crap that I have to go through. Unfortunately, I'm not an extraordinary case... many people go through the same, or similar, or worse hurdles... every day of their life.
It helps when you have great friends, a great family, great people to talk to who give you someone to talk to, an understanding nod when you need it, or something to laugh about during those.
Many don't have that. If you're one of them, I'm happy to talk about it (contacts below), if you think a friend or family member, or even stranger is going through that - be there for them or feel free to pass them on to me.



But sometimes... The whole world seems bleak; you struggle to do even the most menial tasks, you've been sad for so long that you forget what it feels like to be happy... and even the things you love fail to bring joy to you anymore.

You don't need to be in physical pain for that to happen. Anything can bring it on; loss, bullying; in fact, for many, nothing does... it's like it's your natural state... and the self-loathing we feel when we think we're worthless because of that... that can push us further into that sad, blue pit.

Depression... that's a whole other pain of its own. It's no coincidence that major depressive disorder is present in at least half of all people who commit suicide. Probably more. I've been through depression myself... and it's not always for the reasons you'd think are "obvious" in my case too... 
I'll be writing a big one on that topic soon... but in the meantime... if you're struggling to cope... if you're struggling to find reason... I want you to watch this.

And read these:

My experience with depression due to loss. How I got through that.

My experience with depression due to self loathing, self-esteem issues and loneliness due to doubting myself. And how I (and how you can) got through them.

Contact me: 
Here on the blog 
Email: nikhilthegrizzlybear@gmail.com
Facebook: www.facebook.com/musingsofamedstudentpatient