Thursday, November 12, 2015

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

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 "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 spoonIf 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.

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.

Friday, October 2, 2015

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.

Thursday, September 17, 2015

The Best Motivation Ever is One That Gets Someone to Believe In Themselves. What do You Say to a Dying Person? Part 2

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When I got a message from him a few months ago, after a while of him not having responded to my last one... I was so gladdened. 

This guy was terminal. I thought, like many friends I'd made through this blog, he was another one who'd passed... His story was another level of devastating though. His partner, who'd messaged me while he was circling the drain, was also a cancer patient. And he'd died while Aden, who's given me permission to share his name now, was unconscious. Aden had to wake up to that... after a life of abandonment and neglect at the hands of foster carers and this disease too... That was horrible... And when I heard that, at first, as I talked about in this post, I did't know what to say...

But I was doubly glad to get that message. Because in it - he told me that he had a shot at survival! His doctors were convinced by him to take some drastic measures. He wanted to live, and to share his story and help others, despite all his pain, SO BAD that he was willing to go through anything! And I kept him going, sharing funny jokes, amazing videos, being there for him, just talking - anything to keep him smiling.

But a few days ago, after us asking eachother how the other was (the capacity for people to care for others' pain, despite what they're going through themselves, always strikes me),  he messaged me again... this time saying,

"I dont even know if im okay anymore, I dont even know if i really care."
"Whats the point all this?" Why keep trying?

Again I didn't know what to say for a bit. What do you say to a dying man (he still, despite his attempts, would likely still die) when he's got nothing much left to live for?

For a while I agnoized over this... but eventually I decided to do what I'd heard Dr Teo, world leading brain surgeon, founder of the Cure Brain Cancer Foundation and PASSIONATE, REAL Doctor does... I've heard that when he sees patients, with what other doctors have pronounced "inoperable brain cancer" the first thing he says to the patient is "If I operate on you... there's an 80% chance you'll die, right there, on the operating table. If this works though... you'll have another half year of life. Before I operate... I want you to tell me: WHAT ARE YOU GONNA DO WITH THOSE 6 MONTHS?"

When I heard from someone that he'd said that to them... The raw power of that... the sheer will I saw it conferring onto others, struck me. 

Without knowing it... I'd done something similar to others in the past. People going through depression, those who were looking for meaning in life... I'd told them to view their time on this world as a means to something, something most (though not all, I always let them help themselves) found, after talking to me, to be one that ended up leaving others happy. For my own purpose is to try and make this world as good a place as possible... 

What better way of making yourself happy is there, I figure, than making someone else smile. Unlike money, power, fame, or women (or men)... that feeling of making a difference... that could never be taken away from you, or made to seem hollow or meaningless in the long run.

And then I'd told them that they COULD do all those things. That the only thing that limits them is themselves. That, even if they PHYSICALLY, or mentally couldn't do a few of those things right now... they could still do incredible things. And those incredible things, no matter how "tiny" they seemed... were still making incredible ripples to some. And that THAT'S what mattered in the end...

But again... what do you say to a dying person? After a while...
I told him this; " It's horrible what you've been through. And I wish I could do something to take it away, but I know I can't. 

But one thing you do have power over is how much you can take out of your days. And that can still be lots. 
It's not easy to see, especially when there seems no point to all this, especially all you've been through, especially if you're restricted by so many things... But there are some things in this world that are awesome and are beautiful and they are worth living for. The most beautiful of those I find is that of friendship. And that connection people can have to others... it can be awe inspiring. 
Your friends, they're still there for you, right? Even if they're not always able to be there, I'm here - from across the world and happy to talk whenever I can about anything. And I WANT To. As do those friends who may just not know what to say right now." As you reading this know, I didn't for a few days too...
"But even if they're not - I found at some points. When going through the most depressing, painful points... that going back to the things that REALLY mattered, the things that are beautiful in their simplicity, made it worthwhile. 
Watching things in nature got me to realise that again. I guess as a fisherman... the interactions everyday things have to eachother got me going. I know you love learning too... About how things work. That fascinates you. And you can still do that! No matter what.
But the thing that really matters is what you're doing right now... your work to make others see what its like. And to make others smile... And THAT my friend is something you can STILL DO!"

And a few days later... I realise now looking back... he wrote this post. Go read it. Go tell him how awesome he is, and wish him luck and well in his recovery from that surgery. Despite all he's going through... he's STILL doing this.  

His words back, I'll always hold dear and treasured. His resolve and determination, will always inspire me. Indeed... it's often thoughts of him, and others I've felt pass... who keep me working on my cure for cancer and to help as many people in this world as I can. 

And he assured me my words were good too... He told me, as part of his message back that "that was inspirational.. that was incredible.... I think i might do something like that.... And yes, if its no problem for you to do that.. if its no trouble, if you would like to.. I wouldnt mind if you linked my blog inside yours"

That's half of what this post is about. These words I've said though could help so many others reading on... Because he also told me that for "so long" he'd been trying to fight off his depression and anxiety. And that "[I'm] Just so bitter now, and i dont want to be...."

He found this courage from what I told him. This is something I wanna tell all of you... 

Life can take so much away from us sometimes. It can make us feel weak, and powerless and incapable of doing anything. And when it does so for so long, when it causes, or when we're already at a point where it feels like our mind is against us... it can seem impossible to get out of. 

But one thing will always be true. No matter how dire situations get... no matter how bad things seem... there will ALWAYS be something still worth going for. And there will ALWAYS be things YOU CAN STILL DO. You can always make an impact in someone's life. You can always take steps to being a better, stronger person. Whether you're stuck behind a desk, at the bottom of the ladder in your firm, not there yet, whether you're trapped in a world that tells you you can't do what you wanna, and have no means of getting past those burdens, or whether you're stuck caring for 3 kids 

And I hope this amazing man, who is lying in a bed somewhere right now, going through the toughest times in life, makes you see that. 

You will ALWAYS have a Second Way of Looking at Things.

Aden's blog - 1 more time: 

Tuesday, September 8, 2015

How I'm Planning to Cure Cancer. My Big Idea.

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Okay, so I've been harping on to my friends/family and other connections I have about this big idea I have to "cure cancer". I've been able to explain it to many close friends, and whenever I get time, I explain the idea and process to doctors, researchers, CEOs, med student, as well as laymen friends, but I guess I realised it'd be good to get it down on paper, in a place that many people can access and understand and possibly give feedback or further ideas on. 

So what is it? Is it REALLY a cure? When could it help me or a family member? 

I want to stress that this is just an idea right now. Though many researchers I've talked to are intrigued and say it's very possible that it could be a solution, it's still just in my head for now. There is evidence and proof of concepts for many integral parts of it though. The key is figuring out the gaps and finishing it off. Which I will do soon.

But before I go onto the cure, he's some background on the idea, and the way this disrupts the entire way we're thinking about finding a cure. 

Why The Cure Hasn't Been Found Yet.

The internet is FILLED with conspiracy theories trying to explain this. How can it be that despite BILLIONS of dollars and DECADES of modern research, WE STILL HAVEN'T FOUND IT? 


Well... Yeah... I mean there could be an unknown treaty, or some gang of evil people we don't, and will never know about buried deep beneath every big, small and starting up pharmaceutical/biotech company and government body in the world that stops them from disclosing it... But though there is merit in the idea that pharmaceuticals won't invest in a drug that won't make money (the thing is they have to, it costs billions of dollars to develop 1 drug, takes 10-12 years to do, for an overall 6% chance that it passes trials. Recovering the money alone would require them to charge obscene amounts for drugs. They have to profit on top of that to exist) and though they are bastardly organisations that bribe doctors and misrepresent, or even commit fraud to get drugs approved for sale, this logic fails under the tiniest of scrutiny because if there WAS one single drug out there that could cure it all, or one single target that all cancers are susceptible too, a company would have made tens of BILLIONS of dollars off it by now

A Ted Talk explaining the volatile nature of drug investment; the base reasons behind it that I explained briefly above, and a pretty simple, radical, but very possible solution that can get MORE investment in clinical trials that get drugs to market!

Why Cancers Are So Hard To Treat. How we're doing it Now.

The thing is... there ISN'T a single pathway that you can attack to cure cancer. There isn't some miracle drug or herb that can absolve, or kill off all cancer cells either... Hell, we shouldn't even be talking about curing cancer - because in truth... cancer is not 1 single disease.

We shouldn't even be calling it "cancer." 
We should be calling them "cancers." 

Cancer occurs when a normal cell in our body gets its DNA, the "code" that's behind every function and thing in our body, damaged, which causes it to mutate in such a way that it starts multiplying, uncontrollably, or that it becomes immortal, and doesn't kill itself, as it should, when damaged, or something like that. When multiple mutations occur simulatenously, or when it's combined with other processes that make it evade, or even adapt, almost evoultionarily, to reject the way the body's immune system, which usually polices for, and kills thousands of potential cancers every day, works, it can become bad enough to threaten our very lives. This is a great resource that outlines these methods - be warned though - it is designed to be understood by medical students, so it can be confusing. YouTube gives a lot of this information pretty well though! Ask me anything you want about cancer, I'll try and answer it (if I don't know, I'll learn!)  

There are billions of "base pairs" in a person's DNA, so many pathways a cell could mutate down if damaged (many of which we don't know), so finding the cure for even ONE particular cancer's SUBTYPE is hard. When you consider that every type of cancer has multiple general pathways by which these mutations generally occur, and that EVERY PERSON'S cancer is different (even 2 people with the same, most specific class of cancer will have slightly different mutations), that every person's response to therapy is different and that EVEN IN EVERY PATIENT, THERE'S NOT 1 SINGLE MUTATION PROFILE - pancreatic cancer patients on average have 26 - meaning that every patient has, effectively, MULTIPLE CANCERS at once - which may or may not respond to the same treatments... it seems nearly impossible to find a miracle, silver bullet for even ONE subcategory of cancer. 

But that's not to say there isn't hope. And that there isn't progress. Childhood cancer survival rates for blood cancers (accounting for 40% of all childhood cancers) has improved from less than 10% surviving beyond 10 years in the 1970s, to over 80% today. Survival rates in adult cancers have similarly followed suit, though not all cancers have as high a survival rate as that today. I know mine didn't. But the overall trends are showing improvement due to the fruits of research. And that is good!

Overall survival of cancer for children IS on the up! Data from England from 1990 to now. 
An essay I wrote on how to translate the fruits of basic research into cures faster! I'm writing a book on this topic of improving the pharmaceutical industry soon too. That essay is a "prelude" to it.

More recently though, as we've learned more about cancers, their genetic/tumour profiles and learnt more about how different cancers with different mutated regions of DNA work and respond to treatment, we've been able to start rolling out more personalised treatments. Personalised in the sense that we can now examine a person's cancer cells, look at what mutations have occurred in it, and, through knowledge gained from either our increased knowledge of the molecular pathways of cancer or clinical trials, prescribe treatments that suit the individual patient

This boost in and of itself is remarkable. And as other areas of cancer and of our genome, and body in general become elucidated, we're gonna get overall better outcomes for cancer patients around the globe. Which is bloody awesome! 

The Regulome Explorer - a genome map that highlights to researchers the connections between different mutation regions (often, mutations down one pathway can affect the expression of other proteins in different, but interrelating pathways) and clinical outcomes too. This kind of specificity is becoming a reality! But, as I learned from talking to leading researchers in the Garvan Institute, Sydney, educating doctors, and patients when talking about whole genomes, on how to interpret these things is another issue altogether. 

Immunotherapy is also an emerging, promising field that promises to improve treatments. It essentially describes any effort to engage a patients' own immune system to fight their cancer. This is done by using various mechanisms to allow a patients' immune system to recognise cancers as invaders (eg: dendritic cell cancer vaccines), using specifically designed, cancer targeting immune system components (eg: monoclonal antibodies and adoptive T cell therapies, which are interesting as they take patients' own white cells and redesign them to be cancer killers) or by decrease cancer cells' own immune-evasion mechanisms, to allow patients' immune systems actually stop, recognise and kill cancer cells (eg: checkpoint inhibitors, polsacchraides; aka magic mushrooms). 

A decent summary of the function of the immune cells I'll be talking about most in my solution latet on, that are used most in immunotherapies. CTL = cytotoxic, or toxic to cells, T lymphocyte (lymphocyte = white cell). The B cell pathway, which I'll talk about later, produces antibodies which can go ahead and kill cells without having to go through complex procedures which recruit other cells to come in and help kill them or require cooperation from cells - cancers don't usually cooperate. 
Dendritic cells are professional antigen presenting cells (which are required to activate T helper cells as seen in the diagram above). As seen below, they can activate the immune system against cancers by marking it a foreign substance which T cells can then respond to. Other immunotherapies and their basic ideas are also featured in this great infographic. TCR = T cell reeptor, which allows T cells to go around and examine, or police for bad cells, which their TCRs can regonise. And MHC, seen in both pictures, is, how presenting cells (in MHCIIs case at least) show T cells something bad is about. 

These immunotherapies, if combined with conventional therapy and surgeries, or even on their own, could increase cancer survival rates hugely into the future! Some go so far as to say it's the future of cancer treatment... But hell, my own bone marrow transplant is a crude - hit 'n' miss version of immunotherapy. And it's been around for decades! They gave me someone else's blood stem cells (a common misconecption by many is that they actually need to take your bone marrow. In truth, the procedure on the donor end is similar to a plasma blood donation in over 90% of cases), which make all the blood cells in your body, including your white cells which comprise your immune sysetem. Hence, after the transplant is complete, I've got someone else's immune system in me, and though we're matched, tiny differences between my immune system and my donors are bound to be present, and his immune system will detect and kill those cancer cells, where mine couldn't. 

Adoptive T cell therapy, with a  twist - it's using the HIV virus to manipulate T cells from the patients'  own body to become targeted to cancers. These T cells are then cultured and popped back into the patient's body. But though it's cool this is happening, can this method be used viably on every patient? That's the conundrum my solution seeks to solve.

Though there's this trend I talked about above of more personalised therapies coming out, they aren't personalised in the sense that it actually gives a patient their own, unique treatment that's targeted to their own, unique cancer cells (which, as we know now, can vary, and hence react different to treatment, immencely). The same goes for many immunotherapies. Though the method in the video above is using the patient's own immune system, it still is DISEASE SPECIFIC. It isn't using a widely appliable methodology, one that can potentially work for multiple cancers because it FOCUSES ON ONLY 1 TARGET. 

There have been other cool ideas that try and combine the personalised approach with immunotherapies. This is one of them. When I saw this announced, I was almost over the moon that someone had been thinking like me (my solution and how I got to it is right in the next section)! Essentially - these guys look at individual patient's cancer cells and the mutations they have at them through cytogenetics/flow cytometry methods, and then use computer analysis to determine which cancer-specific proteins will appear on the surface, or be excreted by cancer cells and cancer cells alone, because you don't want to attack healthy, needed cells, due to cancer's DNA being scrambled (the damage done to the DNA leads to these "tumour specific antigens" - TSAs or "tumour associated antigens" - TAAs being present on cancers). From there, white cells are drawn from the patient's blood, hypersensitized and then exposed to those "Tumour Specific Antigens" (those cancer-specific proteins they found before). T cells will now find these cancers specifically, and go on to induce death in them.  

Awesome! Genius! But very cost intensive - both time and money wise - as it takes weeks to 6 months to analyse patients' samples and then determine tumour specific proteins, and thousands, even tens of thousands, to perform those tests in highly specified labs.  Time is something not every cancer patient has. And money, well, unforunately, the way our world works, if this method can't make money, or show extraordinary results, that can be worth it (because even if governments decide to take the short straw and fund it when a company won't, they still have to justify its expense. Right now, though it has shown promise in SOME patients, it still may not hit later trials, or the market, for its viability. Unless it cures 100% of people, then I'll be happy I was wrong) it may never reach second or third phase trials. 

My Solution: 

A broader way, a method, rather than a single target, to get patients' own immune systems killing off cancer cells is what I'd been trying to come up with for ages. And unlike others, it has to cheap, and viable for patients too. And for a while now, I've had an amazing idea in my head that I've been developing, reading up on, and, it seems almost too good to be true, it may just work! Here it is: 

Okay, so how did I come up with it? I wanted to find a one-size-fits-all solution for cancer. I'd seen and talked to too many other cancer patients who'd suffered, and who'd died to this disease to just sit around and do nothing. But I understood the challenges that came with this, and I understood the nature of our current way of finding treatment options; the ultimate aim - to get approved for use against one disease, was not going to foster that easily. 

I knew about immunotherapies, and how they worked, and was very excited about them. Particularly about the potential to find, and hence provide targets to attack, tumour specific antigens which could then be used as "cancer vaccines" - (I can hear the collective clenching of butcheeks of the anti-vaccers reading on here...) vaccines that aren't the typical preventative ones we get for the flu or other diseases, but ones that introduce a foreign particle into the body to induce an immune response against camcers. 

I saw the work by this research team, who was using information on cancer genome databases to predict how likely a patient would respond to immunotherapies, and contacted them, suggesting, "Why not use those databases to find tumour specific antigens?" To my glee, they were already doing that. 
I then asked, "Well could you then identify common trends between cancers, once you'd found some, check that the immune response you generate against them won't hurt healthy cells, and design tumour vaccines that could be used for multiple subdivisions of cancers in a way that doesn't require individual patients to be tested, and have specific vaccines designed specifically for them?", essentially asking him if they could scale the operations up and look for common links, and correlate the information they had with clinical knowledge of what healthy cells may express. To that, he said that it was theoretically possible, and his team had published 1 article on 1 disease to that tune, but that it hadn't been done til then. Hopefully I ignited a spark in his mind, and hopefully he's gone out and done a bit more of digging because he seemed excited by the idea...

But I remember agreeing with the words of a Leukaemia Foundation researcher I was speaking to on the night I gave this speech, nearly 2 years ago now. "Though I'm working on, and bringing immunotherapy to Austraila, I wish there was a way we could make it apply more widely." 

I also knew that a lot of them failed because they failed to induct donors' immune cells against their own cancers in the first place, or they were too disease specific. Which is why I thought, "Well, why don't we use a patient's OWN cancer cells, harvest them maybe, and find out what their tumour specific antigens are." I thought of how you could possibly do that, and the idea of using inactivated, or killed off cancer cells came to mind after a while. What better way to create a vaccine against something was there than to use the dead version of itself? And it was actually one of my treatments I was getting for GVHD (graft versus host disease),  the major side effect of my bone marrow transplant, that gave me inspiration for what to do next. 

This corner of the board is what I'm talking about.

Extracorporeal photopheresis is the name of that traetment. More detail on it is here (a blog post I did on it). And while I was reading up on it, weighing up whether I should do it or not (though it was non toxic, I find this ironic, because it potentially caused my blindness in my left, and near-miss with blindness in my right eye, it was intrusive), as I always do for any of my treatments, I inevitably came across how they thought it worked. Though they weren't sure yet, the proposed mechanism of action for it was essentially that by taking out the white cells of the body, siphoning them away (which required the insertion of a permanent central line into my jugular vein. You can see how that'd be intrusive) from the blood, and irradiating them under UV light, activated T cells, the ones that were currently attacking me from inside and causing my GVHD (graft versus host disease, the side effect of having someone else's blood stem cells - which produces THEIR white cells, aka immune system, in my body), would "apoptose", or self destruct. As they apoptosed, their membranes, or outside, would "bleb" away, or break apart and wrap around the insides of the cells, allowing for them to be taken up by antigen-presenting cells, mainly dendritic cells, that prime the immune system to recognise from those blebs (which would contain protein particles specific to those T cells attacking me - you coudl almost call them T-cell specific antigens) by gobbling up the T cells that were attacking me from within, and presenting their marker proteins for killing by other T cells in lymph nodes, When memory T cells are also recruited, this kills off T cells attacking me indefinitely.

"This same process could be used for cancer!" I thought. So I rushed away and did my research and found that not too many people were actually thinking down this line. See, prior to this, the idea of using your own, dead cancer cells as vaccines had been tried. Others had gotten as excited as I was by the idea, but they had always failed to do significantly better because it had failed to induce a strong enough immune response, if one at all. But this method, which broke those cells down and allowed antigen presentation of tumour markers to T cells, could! And so I went on to learn more about apoptosis, how it worked, the latest we knew about it (because we don't know everything yet), antigen presentation and the methodology of cancer vaccines before one day I stumbled onto this article. 

People were already doing, essentially my idea! Havesting a mouse's own own tumour cells, killing them off, outside the body, with radiation (which I also was thinking of using, as its cheap, easy and most importantly, it induces apoptosis in cells) and then injecting those apoptosing, blebbing away products back into the body to see if an immune response was generated. And it was. That article focused on the idea that it needed to be BLEBS, not the rest of the dying cell material that inevitably comes with them, that needed to be injected in, and is urging that the results from this warrant further investigation of this in actual leukaemia patients - my very own disease. One phase 1 clinical trial had actually used leukaemic blast cells to do that and 2/4 patients with AML - the most aggressive leukaemia, had responded!!  Only last year too had those papers been published. They probably weren't as I'd thought up my ideas, I realised.  Hell - while writing this, I found that one company was already looking to try these in large scale studies for melanoma and had even produced a video explaining the process! Check it out!

Great, right? My work was done! My idea was coming true!!

But not yet... 

Though it is exciting my idea is already out there, being investigated and being done, the fact is, it's still not helping all patients. Meaning it wasn't the cure, as I thought it could be. There were various things blocking the way. I've made a pact to send the researchers, who may not be aware of the work of others in the field, information about other techniques others were using, or more insights into immunology and dendritic cell vaccines that they hadn't looked at, that they may want to add into methods in the future to increase efficacy. Things such as those I wrote up in this corner of that board. 

One of a few extra things they could do to increase the efficacy of this method. And below - more of this, and the fact that this methodology will work best with other standard, and other newer cancer therapies. Sorry about the bad quality pics. Click for close ups. I'll get a better one when I'm home.

There are many reasons why this method could be failing. I plan on sending these to those researchers soon. Perhaps the cancer cells harvested weren't being apoptosed properly in the first place? Radiation is the methodology used in both of these studies, as well as others that have looked into this idea, but there are other agents around that could induce apoptosis more effectively in cells ex vivo (out of the body). Maybe apoptotic blebs and dendritic cell/antigen presenting cell complexes (antigen-MHCII  complex formed at least) weren't reaching lymph nodes? Ensuring dendritic cell loading of vaccines happened in areas of inflammation or areas where immune system signalling molecules, chemokines, of the right type were being released was vital.  Maybe the wrong version of CD4+, or T helper cells, the ones that respond to antigen presentation, were being produced. TH17 cells have been shown to be several times more immunogenic than TH2 cells and there are different signalling molecules that induce their activation. Maybe these need to be given to patients simultaneously?  

But I also knew one thing. Perhaps this methodology alone was doomed to fail in some people, because of the fact that cancers have many methods of escaping the immune system. Some patients may have cancers with these mutations or adaptations in them. Meaning that with this alone... they'd be doomed. 

How cancer cells evade the immune system. 4 major ways they do. 4 ways for this method to fail.


I've recently come up with a solution to the next part of the problem. One to help even those patients whose cancers could evade the immune system! Because so far we've been talking solely about inducing a T cell response against cancer. What about the B cells? The other major leukocyte? Why not get them involved? 

I can't believe, looking back, that it took me so long of thinking of this idea. But then again... many great solutions, great businesses, and great cures have come from simple, elegant solutions, from a new way of looking at a problem. The fourth and final corner of my whiteboard goes into what that idea is.

Essentially - it's a way to get patients to get their own, autologous, tumour-specific antibodies to be produced to attack cancers! I'd call it "autologous tumour specific antibody production". Or an "autologous /b cell vaccine". Antibodies, unlike T cells, don't require co-stimulation that can be blocked by cancers, through methods such as those in the video above. They don't have limits on where they can go (at least not as much) due to poor tumour microenvironments adapted to shooing away regular immune cells (antibodies are just glorified proteins in comparison to cells). They can be produced by the body in almost endless amounts, and though B cells do often require T cell costimulation, or T cell independent costimulation to start producing antibodies, these can be stimulated in other ways simultaneously to  allow B cells to produce those vital antibodies. 

How this works? Well to explain it better - when we harvest cells for use for use to induce apoptosis in them and bare the cancer's secret treasure - the Tumor Specific Antigens or Tumour Associated Antigens - that mark them as different, we keep a portion (I say half on the whiteboard, but the real proportion will vary) to use as testers to determine what T cells bind to them. 

There is a chance we could skip the whole apoptosis inducing, tumour cell harvest process altogether and skip to this B cell part if there were a way we could create and mature naive T cells, which haven't been taken out if they're autoreactive (I say naive ones, because they'd be more likely they'd adhere to tumour cells, though thinking about it, it could produce false positives, or 'B cell vaccines' that produce self reactive antibodies which is unsafe - a procedure would be needed to eliminate these in that case. I get ahead of myself, this part of the idea is under formulation as you can see haha), and activate them. But preferentially, the other method will be used, as it produces tumour specific T cells which is vital for the next part. 

The tumour specific T cells that are determined from the responses to tumour cells themselves can also be cloned (T cells can be cloned right now, and the major thing which stops them from being cloned, the lack of stimulation by target cells, isn't an issue in this environment, where we're using the target cells - cancer cells) to isolate clones anyway and reinjected back into a patient, to create a larger adoptive T cell response. Perhaps a reason why the first step fails in many patients is that a large enough response isn't generated. And this may be enough to kill cancers on their own.

What needs to be done then is we run the patients' entire (or a large portion of their entire) T cell/white cell population, after having had the patients' cancer cells being apoptosed, introduced into the body with Dendritic cell adjuvants and allowed time to create ample amounts of tumour-specific T cells, against isolated tumour cells, and see which ones adhere. An apheresis machine, or a "donation" of patient T cells and sending it to a lab capable of doin his, will be required. That bit, seeing if/which T cells adhere, can potentially be monitored robotically, independent of people (as is done in the video below, in what is an amazingly cool project), or it can be done in a more scientific manner which I'm sure I, or one of you, will think up soon (as I'm writing this, I'm realising that we could simply monitor for release of Il5, IL9 or other cytokines they release - depending on what kind of THelper cell attaches, as they release different ones, once they've attached to a target cell. OMG I'VE FOUND IT, a much easier way to do this!), but once it is, the T cell will then have its T cell receptor examined, which will elucidate the antigen that the cancer has as its tumour associated antigen!

Once we know what that tomour specific antigen, or that protein complex that marks them, we can simply inject it into the blood, in an environment where T cells are simultaneously active (which it will be if tumour-specific THelper cells are floating around) or in other circumstances, where other co-stimulators of B cells are present, and get B cells that'll produce antibodies specific to a cancer acting against cancer. From there - you could essentially have a T and B cell, autologous antibody production unit that is specific to one person's cancer!

Holy shit. I may have done it. I may have fucking done it. 

Why this will Work. Why this could Fail. 
The pros and cons and the assumptions I've made.


  • This works on A LOT of levels, simulatenously. 
  • This method can be combined with other therapies right now. 
  • It is one that can be applied to a whole bunch of cancers, and initiate immune responses to them. 
  • It is one that can work in poor areas too, if the methodology can be reduced to something easy, and replicable, which I believe it can. 
  • Even if it can't, the costs of this will be minimal in contrast to the cost it takes to treat people with the top of the line, latest cancer drugs right now. 
  • And the fact that part 2 of this will require a machine, which can be commercialised, means it can still make money, and hence, it won't be lost in the latrines of the pharmaceuticals and the patents they've made. 
  • If this doesn't work to cure cancer, the very technique, at least the "second half" involving the removal and immunostimulation of patients' tumour cells, could be used to find targets for cancer drugs in a new manner. 

I can potentially patent this idea. But I don't really care if someone else gets it. If it's someone who doesn't want to do anything with it - I've got all these documents of work stored up in Peddal - an electronic public dating list for files which can prove I got to these conclusions before anyone else did. 

The reason this has kept me up at nights... thinking... are the friends I've lost to this disease. The people I know still suffering because of it. The heartbreak I've seen others go through, and the pain I've gone through myself. 

That's what I want to end. 

For Good. And I hope this can actually do this. But. As my wise old dad says - if you have an idea, put it out there and don't be ashamed, afraid, or scaerd if it gets shot down, because in the end, that will allow you to stand back up next time with a better, more bulletproof idea. So let's do that!

The cons/The Assumptions:

  • It will require specialised labs/equipment to do some of these procedures. Apheresis machines aren't cheap. To run or purchase. (You only need apheresis for part 2 - the B cells - though.) 
  • I'm assuming that analysing T cell receptors as they attach to cancer cells will lead to antigens being found. T cell receptors are slightly different to antigens (proteins/antigens don't necessarily act as ligands to them) so it may take a few shots to find the right antigen. I've read up on it briefly. I'll be looking into it in more detail later.   
  • I'm assuming a lot about the potential for antigens, once they're found, to be converted into antibodies inside the patient. I may be going too many steps ahead, and realise later that it's an easy process that a dumb ol' medical student could've reseaerched. Don't worry, I'll be looking into it. But how a protein or peptide (the patient's own antigen), if found, can be replicated and reinjected back into the patient at levels to initiate a B cell response is, right now, beyond me. Don't worry, I'm looking into it though. 
  • I'm assuming all cancers will have external Tumour Specific Antigens or Tumour Associated Antigens (the difference, TAAs usually refer to antigens secreted by the cancer) that can be targeted by antigens if the entire process works. Of course, combination with other therapies to make tumour microenvironments, for instance, more permeable to the immune system which'll be key to this treatment, will be advocated for; probably required to be honest. 
  • The latter brings about another idea. This assumes a patient's immune system is still intact. That isn't always the case, especially with blood cancer patients. However, with current treatment, in many instances, patients can be brought to a stage where their immune systems are competent. If not, perhaps extracorporeal (outside the body) applications will need to be looked into in more detail too. 
  • There are a lot of steps in this process, where each part could fail. Maybe I need a direct route/plan. 

But if this works... goddamnit... it could be amazing. And I really hope it does.