Nikhil Autar

Month: February 2018

  • Cancer For A THIRD Time. When Will It Learn, IT CAN’T MESS WITH ME!

    So… what’s been going on you ask?

    What’s with that chemo drug you were talking about on Facebook? I thought you said it wasn’t for cancer… and now you posted this?

    Well, let me explain.

    Recently I started a “chemotherapy” drug, but not for cancer.

    It’s called rituximab  – and it’s not only in brackets because it’s technically, in my case, not a chemotherapy, as it’s not “A chemical agent used in the treatment of cancers” (it was given for another condition I have – a side effect of my bone marrow transplant; chronic graft versus host disease. I’ll explain it in detail in a later post) but because it’s mechanism of action; the way it works is not in line with most chemotherapies.

    Sure, it can have some of the nastier side effects of chemo – nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn’t kept on it), but many people tolerate it pretty well beyond that.

    Me included, so I thought after the first infusion. My reaction to it was mild – only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days… the worst side effect came on.

    The cramping.

    Now I’ve had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They’ve were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here – don’t worry, I’m past that now) but since starting this medication… which is supposed to reduce them over time… they’ve gotten even worse.

    The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn’t stop cramping the entire week.

    But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night… that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath.

    We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm… I’d just won a game of poker. So off to emergency we went.

    Just another day in the office for the masked bandit…
    Haha played 2 big tournaments in this mask to protect me from infections. It also gave me an extraordinary poker face.

    Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan… A pulmonary embolism… a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT.

    So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I’d received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.

    “Well… we got your CT back… Though it’s clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma.”

    For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play… and the cogs in my brain started whirring… chondro – something to do with cartilage… the tense look on the residents and medical students’ faces behind me meant something was up… sarcoma… a cancer… of the  connective tissue.

    Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge.

    “How do they know it’s a chondrosarcoma?”

    “Well… they don’t definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it.”

    “Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?”

    “Well probably not the former. Infections don’t look like that on scans. The latter… well… we’re still not sure. We’ll have to biopsy it to see.”

    And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.

    When I told a friend… he just said “You can’t catch a break, can you?” It certainly feels that way sometimes…

    Still, it’s weird though. I didn’t have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren’t convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere.

    And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying… given my history of acute myeloid leukaemia… that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could’ve been back, this time in my bones…

    My reaction to this? Exactly the same as here:

    Yeah… I may have cancer again. But, just like when I first got it, just like when I relapsed, just as I’ve done in every challenge, when pursuing any goal, just as I’ve done ANYTHING in life… I took a step back, put it all into perspective and decided to focus on what I could control, on what could help me, rather than all the negative emotions, worries and thoughts; than all those things I couldn’t. Because, as I always say, you’ll always have a second way of looking at things. And you will ALWAYS be able to choose how you deal with any situation. No matter how hard it seems… Indeed, once you see that second, more positive, constructive path… taking it becomes the only LOGICAL thing to do.


    I went out and looked at all the evidence of this being the worst case scenario… my original leukaemia coming back. There wasn’t much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn’t had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML – the chances of it being that were tiny.

    And luckily my haematologists agree. **Phew** In the off chance it is that though… I’ve still got heaps of options. Even if it’s the worst worst case scenario… I’ve got one of my own. Over the last few months I’ve been looking seriously into cancer vaccine immunotherapies – thinking of a way of applying them to a wide range of cancers. There aren’t many therapies that attack all cancers… my methodology may well do that – it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect – because unlike many personalised therapies, such as this one, this doesn’t require huge imput and study of patients’ own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease – AML – with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one – and adds more from others. Plus there’s another innovative component that’ll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me…

    But the more likely, less sinister case – that it’s a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that – the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues… it may be a bit more  confusing, it may take longer than most patients. But hey! I’ll pull through!

    I guess you could call me unlucky… getting a really bad… agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn’t exactly something you’d celebrate.

    But when you take a step back and think about it from another perspective; I’m extremely lucky. Because if I hadn’t been cautious, and come in when I started getting that shortness of breath, if I hadn’t had that CT scan… we may never have found this til it was big enough to cause me pain, at which point… it could have spread elsewhere. where it’s virtually untreatable.

    You always have a second view of looking at things.

     

    So why not choose the one that leaves you happiest?

    Well… that’s good and all. But that doesn’t change the hard part… the treatment, though. I guess we don’t really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he’s happened to treat a few people I’ve met through this blog, as well as a good friend I know in real life – so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you’re sure it is something that at the very least will progress to cancer, he argues. I guess he’s the specialist here, and everyone else is, so I’m inclined to agree.

    The surgery is on tomorrow. Or failing that Thursday. And it’s gonna be painful as hell, I’ve been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which’ll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back – places he’s planning to cut into. So that’s gonna be… uncomfortable (a word doctors use to say pain when they don’t want to say pain) to say the least…

    There are some risks, my lung cavity could be pierced, there could be infections that come around with it.

    But hey – I’m in great hands.  And I’m choosing to see this, just as I have every other time, a minor inconvenience that’ll lead to me being healthier and happier in the long run. As I’ve said before here… and as I spoke about here… fear can be paralyzing…

    But it’s not only normal to feel that way about things like these… and knowing of, and acknowledging it isn’t scary… it’s the best thing you could do for yourself. Because when the hard times come over the next few days of surgery and weeks of recovery… I’m not gonna crash down into despair… I’m gonna look at the big picture. What this is all for. And I’m gonna get through it. Like I always have!

    Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they’ll keep me going over the next few weeks I’m sure! I’ll keep you all updated but don’t worry – in the meantime – I’ll still be busy. I’ll still keep working on those projects I’ve been hinting at. Cause hospital’s boring. This may well get me working more efficiently than ever on it (IF I’m not high on morphine all the time that is =P ).

    Thanks again everyone – and please don’t worry. I’m in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too.

     

  • How to build self confidence and become the happiest version of yourself!

    I was diagnosed with leukemia at 17 and given a 10, maybe 20 percent, chance of living.

    And I was devastated… as any human being would be. But after a while I started to dislike that feeling.

    The constant depression.

    The tears.

    The gut-clenching dread.

    I wanted this to all be over. I wanted a way out of the hole that I’d found myself in. But with chemotherapy, uncertainty, and probable death in my future, there wasn’t much to really look forward to.

    In the end, what ended up helping me most wasn’t this spark of inspiration or willpower or bravery after watching some inspiring talk or reading some book. The words of everyone around me felt hollow.

    What did they know about what I was going through, after all? I was 17, and had just been told I probably wouldn’t live to see 22.

    What really helped me was a simple thought process I did after just being sick of that angst.

    I decided, “Why not take a step back and looked at what had happened to me, as if it had happened to someone else.”

    From there I guess I saw everything that had happened to me objectively. So I could finally question everything that was going on and more importantly, how I was dealing with it.

    And I did that through asking why. Why was I feeling that way?

    There was no answer. In the end I realized I had what I had. Though it may suck, I couldn’t go back in time and change what had happened. I couldn’t take away my cancer.

    So, what was my anger and frustration accomplishing? Nothing. Other than making me feel worse about everything.

    Why was I feeling that way then? In the end, it was coming from me, my brain. Why was I doing that to myself?

    I didn’t have an answer for that.

    Nikhil Autar Scar Stories 3
    Photo credit: Analia Paino

    But that question alone made me realize one thing that stays with me to this day. Because if all of that was coming from me, my brain, my mind… that meant I could take that away, too.

    In the end, we will always have the final say on how we deal with things. At the very least, we’ll always have a second way of looking at things.

    But we’re only human, right? And with months to years of chemo, pain, treatment — all of which is likely leading to me dying anyway — there wasn’t much to look forward to, right?

    So I questioned those fears and doubts, too.

    Again, one question got me through that — Why? Why was I thinking I was cursed for being diagnosed so young?

    My doctor’s words as this happened rang through my head as I heard this. When I was diagnosed he told me, “The good news is, you’re 17 and you have leukemia, but the bad news is, you’re 17 and you have leukemia.”

    Good news? “Good news? Really dude!” I remember thinking for a while after that.

    But when I thought about it, being diagnosed young meant I could get the optimal treatment — I could recover faster. I didn’t have a job or a family or kids to worry about. Indeed, I had one right there beside me the whole way!

    What I once thought was a curse turned out to be a blessing. But why was I so afraid?

    I was looking at chemo as a thing that brings pain and misery. And it would. And that sucked.

    But wasn’t it also a medicine? The very thing that could get me out of this? Indeed, my doctors wouldn’t be putting me through this if they didn’t think it could work.

    Why was I so pissed off, afraid and depressed?

    In the end, I was worrying about all these things I couldn’t control. And that worry and stress were only hurting me more.

    From stepping back and looking at my situation objectively I could see the only logical thing to do was to focus on the things I could control.

    My health.

    My actions.

    My happiness.

    Because what this has taught me is you will always have a second (better way) of looking at things. Always.

    It’s not easy to see that straight away. Definitely not if you’re overwhelmed and in the midst of it. Depression makes that harder, too.

    But if you can take a step back, talk about it with someone, and just ask, “Why?”’ You can get yourself through just about anything and become the happiest, most successful version of yourself.

    It doesn’t take courage. I wasn’t brave or inspiring in my “battle” (in truth, it was a beating) with cancer.

    I cried, I wailed for it to be over. I still do sometimes. (Beating cancer isn’t always the end of pain for many survivors. Depression came, too. It’s something I face, and I write about it here as well as on my own blog). But I kept in mind these things — what it was all for — and by doing that I saw something good in the darkest days of my life.

    You don’t need some superhuman willpower or positivity, either.

    Because in the end, if you can take that step back, and ask why… if you can help your friends and family do the same… then it becomes only logical. It only makes sense to take the path that leaves you most well-off.

    And I hope what I’ve said can help you do this.

    Nikhil Autar Scar Stories 2
    Photo credit: Analia Paino. Sign up to my email list to get my latest blog as soon as it comes out!


    One place where I think I’ve done this after cancer, against something which some of you may be feeling (whether you’ve had cancer or not), is with my social anxiety post-treatment.

    You see, before cancer (not to brag or anything) I was quite a hunk (at least I thought I was). I wasn’t too fussy about how I looked but was a little, just as much as any awkward teen is. But I was fit. Very fit. I used to train for basketball almost every morning before class, and during breaks, and abide by a strict weight regimen.

    But after treatment ravaged my body, I was left bloated out of my mind, unable to jump an inch, yet alone run. I’d lost a huge part of me. And it sucked.

    Without even realizing it, I began using my health as an excuse not to go out. Whenever I did, the glances from people would bore into me, asking questions as to why I had such horrendous features, and when I tried to walk around the suburbs and try to run again, I’d feel ashamed when I’d puff out after less than a football field.

    As I started my medical degree, I’d made friends but didn’t want to go out for fun or to events. I even stopped going out to see old friends at all, worried about what they were thinking. And that made life so much worse.

    One day though, I sat down, took a step back and asked, “Why am I feeling this way?”

    After a few days of thinking about it, I realized I was afraid. Not of chemo, or radiation or bone marrow transplants and other things that could kill me this time, but from other peoples’ thoughts about me.

    It already seemed ludicrous to me at that point. But when I questioned it, I found no answer as to why I should care so much about other peoples opinions about me.

    Because:

    (a) Most people aren’t thinking anything bad of me at all. People have to look somewhere when they walked, and if they happened to look at me, most people wouldn’t think anything nefarious so much as to walk on. Many would smile. Most would smile back I’d say.

    (b) Why was I caring so much? If they were judging me, they’d be pretty shallow, inconsiderate people who I really wouldn’t like to be friends with. Why do we all — whether we have scars or not — try so hard to impress people we don’t even like for that matter? Why not instead, focus on what we’d like to do. On the things that make us happy?

    Now that was the first step. It wasn’t like I came up with this new philosophy and started becoming this happy #YOLO optimist in one day. I started small, by first starting to smile at people (most of the time, they did smile back) on my walks and jogs, then not shying away from asking people for directions at the university or hospital when I was lost or asking the workers at the groceries store instead of trying to find everything on my own.

    I finally reached a point where I could walk around and not care.

    Now I’m very open about my journey but can also do talks, in front of thousands or just a few, about how I deal with things.

    Indeed, I’m the most confident version of myself.

    Nikhil Autar Scar Stories who cares?
    Photo credit: Analia Paino

    But most importantly, this helped me become the most happy version of myself.

    And I hope this helps you feel happier about yourself, too.

    Nikhil writes a blog about his journey, hoping to help out patients, inspire the medical profession (he’s studying medicine now) to educate people on worthy causes and to help others out in all kinds of circumstances (he truly believes this mentality can help with anything, from the mundane struggles we have in day-to-day life, to the epic journeys we take in life). He’s also doing many exciting things, including working in cancer immunotherapy research and a social enterprise that’s revolutionizing the hospital bed, to not just increase patient comfort, but to also hopefully reduce unnecessary cases of infections, fall, and pressure sores — to name a few — which literally kill hundreds of thousands per year, as well as potentially make millions of dollars a year!  Most importantly though, he hopes he can help you, too. 

    This post was originally published on Scar Stories.

  • Your Mind is the best way to Lose Weight and Get Fit. Not crazy, unsustainable, diets (or bootcamps!)

    I talked about this topic on radio recently. Have a listen to it if you want (it’s at the bottom)


    Heaps of people around me have been saying how much thinner and healthier I’ve started looking, and almost all of them have been asking me how or what I was eating or doing to get there… a few even asked if everything was okay… healthwise.



    Well, no, I’m totally fine, and I did mean to lose this weight. 


    To be honest though… it wasn’t really that hard at all.


    Everyone talks about how they can’t stay on a diet and how they can’t find the time to do exercise… They talk about how hard it is to make changes in their life and how they just don’t have the willpower or ability to be healthier people. 

    But even while on 50mg of prednisone, a corticosteroid (which increases your appetite, screw around with your hormones and energy metabolism, and eat away at muscles) and even while I was still getting some chemotherapy which makes me anaemic for a one or two weeks every month, I didn’t find it hard at all.


    You wanna know why? 

    Because all I did to become a healthier person was change my MINDSET.

    By understanding how my brain, its rewards pathways, and its neuroplasticity, as well as how my body processed foods, I was able to hack this, in an evidence based, scientifically guided manner, to make this ‘tough’ journey, as easy as possible.

    It didn’t require “willpower”, “bravery”, or even long bursts of commitment. By hacking my mentality, I made healthy habits just that – a habit. And in truth – it was EASY.
     

    Doctors all tell us that weight loss requires a lifestyle change, rather than drastic, quick-fix 12-day-detox/Biggest Loser boot camp solutions. And they’re right. You should look to lose weight AND keep it off. It’ll help you with heart problems, lower your chances of diabetes, reduces your risk of cancer and also – a healthy diet can make you feel better, more energetic than ever before.


    But the words “lifestyle change” imply that it’s hard, that it requires constant effort and struggle to do, and that’s a big reason why people aren’t willing to make that change.


    Eating the right foods, and getting some exercise on a continuous basis IS vital to weight loss. But what’s even more important is if you can maintain that way of living. 

    And that’s where your mind comes into the picture.
    But trust me, this isn’t some “Yoga,” “Spiritual” or “YOU CAN DO IT” #MotivationalMedia Bullshit.
    It’s 100% based on the science of memory formation and learning. It’s 100% cited here.
    I’m not trying to sell you shit.
    And most importantly, it’s Easy.
     

    A few months ago, I was sitting at around 106-107kg. I was trying everything to get fit and lose weight. I started juicing, cutting carbs out of my diet and went out, trying to run, get back into my old sprint training and back into the weights. And that was working – as it would for anyone – for a few weeks at a time.

    Before: 107kg

    But with my low immunity putting me into hospital with infections every few months, with my treatments lowering my bloodcounts, I kept getting sent back to where I began from over and over again… and it was frustrating as hell.

    I yoyo dieted. Like crazy. I calorie counted. Stopped carbs. Intermittent fasted. Got into calorie deficits.

    But dieting is hard. Forcing yourself to not eat is unnatural and really hard to do consistently.

    I wanted to lose weight and become as fit as I was before cancer… I wanted to see results… but they just weren’t coming. 

    But after a while of this, I took a step back and saw that I was going through a cycle over and over again. It’s the same cycle a lot of yoyo/fad dieters go through.

    I wanted results and I wanted them NOW. But they weren’t coming. 

    So I changed the way I looked at getting healthy.
    I changed my mindset… how I viewed my journey to come.
    And the same thing that helped me beat cancer helped me get fit.


    You don’t need huge “willpower” to do it. All it takes are a few small changes in how you view things.

     

     
    ~5 months later, on the same dose of steroids… I could still fish.
    But I’d lost nearly 20kg. It looks like a lot, but really, it was 1kg/week.
    I ate KFC, pizzas, tacos and junk food the entire way. As much as I wanted.
    Hell – I went TOO low. 6 months after this, I hadn’t weighed myself, and I found out I was 73kg.
    So I ate a bunch of KFC for a few months. And got back to 80kg. And I’ve stayed there for 7 years.

    The only time I gained weight again after this was 2 years after this, when I got a third cancer in my ribs, was in hospital, and when I thought I’d need chemo again.

    The amount of calories I’ve counted? Zero.
    The amount of willpower I’ve exerted?
    I maybe stopped myself from eating 3 or 4 times in that first week?

    So what did I do?
    1) I told myself it would take time.
    2) I let myself be human, and cheat or fail every now n then.
    3) I took a  step back and changed how I looked at food.
    4) I challenged the thought processes that made me keep wanting to eat while I was eating.
    5) I SLOWLY – we’re talking 1 pizza slice less per month  – reduced my portion sizes.
    6) I ATE WHATEVER THE DUCK I WANTED – and let myself be human, knowing, that by reducing my portion sizes slowly over time, my stomach would get smaller and my brain would form neural pathways would make NEW thought processes that would become my habit.

    7) I didn’t have to do anything else. I don’t have to do anything else. Ever. Neuoroplasticity has ensured that I never
    have to try to diet again.

    In more detail and for the science, keep reading. If you’d like to read the whole science kinda thing, and check out the papers behind this – check out my like 30 page book which summarises all of this (all free, lol, I should monetize this to grow it, but I’ve got no time). 
    But yeah. I hope this helps. Email me if it does or if you wanna talk anytime.

    # 1 – I Told Myself that it Would Take Time

     

    –> This is one of the most important realisations you’ve gotta make. No matter how much we want it to, results don’t come in a few days. But they do come.

    The trick is to not only remind yourself of this – but to keep looking at the big picture, on your entire journey – as this will make maintaining changes easier to accomplish. Instead of falling down in a heap if you can’t resist that desert at a party, you’ll remind yourself that the amount of times you had been good, and that in the long run, you were on the right path.

    That lessened burden alone will make you SO much less likely to quit. Letting yourself be human is shown to result in higher adherence to long term plans.
    But also key is to give yourself a LONG TERM GOAL. Something to strive to. Your mind is rigged to release more and more dopamine the closer and closer you get to one, meaning over time, this becomes EASIER to accomplish. 

    The science only helped me further believe, hell, it made me KNOW I could do it. But I mean it only made sense… I was only beginning my journey to get healthy – I was starting from scratch. It would take time to get to where I wanted to go. It wouldn’t happen overnight.

    But that wasn’t a bad thing. I mean, it’s simple statistics. If I did things generally right, over a long period of time, I’d get to where I wanted to be. And by looking at it this way, I wasn’t forcing myself into doing something I didn’t want to – I was ALLOWING MYSELF TO BE HUMAN. knew I wouldn’t give up, or worry, or hate myself if I had a few slip-ups on the way either.

    That’s exactly how you should look at weight loss, or any goal for that matter. It’ll give you the best chance of getting there (and of staying happy on the way too).

    #2 – I Took A Step Back, and Made SMALL Changes To How I LOOKED At Food

    –> Instead of making huge, drastic changes to my diet, or instead of starving myself, I

    1. Took a step back, and
    2. Questioned my current habits, until I saw
    3. An alternative perspective, or way of looking at things, that would leave me healthiest 

     

    The simple act of self distancing is shown to reduce blood flow to emotional centres, and regions of your brain that reference yourself, allowing you to be objective. This is shown to improve decision making. But from this step back, you also are able to see all your options more clearly. From here – choosing to start looking at the path that leaves you happiest and healthiest not only just makes sense, it also comes FROM YOU. Don’t just read how I did it – examine yourself from this perspective yourself – and you’ll get the person most likely to motivate you on your side – YOU. Motivation works best when it’ comes FROM YOU. 

    I’m writing about how I used this mentality to get me through cancer, get into med school, start up a pattern changing health tech startup, and learn to ignore chronic pain – amongst other things – and it’s out NOW (lol just updated this – it is out)! Join my email list and it’ll come in your email for free. Hope it helps!



    3) Hacking your Stomach, and Hacking your Brain
    Reduce your Portion sizes. SLOWLY:

    When trying to reduce how much I ate – I realised that, especially with foods I liked, I was just gulping down food down by the spoonful. But in truth… I wasn’t really taking the time to savour them. The first 5, 10, maybe 15 spoonfuls or bites were most enjoyable. The last few… even with my favourite foods, well, to be honest, I was really only trying to finish off what was left. 

    To change that I made small gradual reductions to my portion sizes. I started savouring my meals and once I realised I was full, I’d just leave it, put it in the fridge or throw it out, and next time take out less.

    Over time… the portions got smaller and smaller. When going out… if I didn’t really feel like finishing off my plate, I’d just leave it and ask if anyone else wanted a few bites. I was brought up on the whole “Finish your plate, there are children in Africa who’d KILL to have what you’ve gotten!” sort of mentality… and it’s true. We waste tremendous amounts of food, and do need to respect it more.

    But why was I destroying my veins, my health, my vitality to assuage this preconception, when I could instead just take out a few less spoons, order a medium (and in time, a small) meal instead of a large one, and pack away good meals for breakfast or lunch the next day, and feel better for it?

    Your stomach usually has a capacity of 200mL, but can stretch to hold up to 1L in most humans, by relaxing smooth muscle cells which comprise most of its wall. Over time, however, if not stretched to larger limits, the stomach loses the number of smooth muscle cells, and pacemaker cells (those which cause coordinated digestive contractions), leading to lowered capacity to relax. Furthermore, levels of neurons which release nitrous oxide, which promotes relaxation of smooth muscles, also reduces in patients who have lost weight recently.

    So over a period of a few weeks, slow, sustainable reduction in meal sizes will cause you to lose the ability to eat larger meals over time!

    It’s interesting to note that even after a while of this kind of fasting, even after overconsuming, average stomach stretchability did not return back to normal levels, meaning you’ll have the ability to have the occasional splurge without starting back at square 1 again.

     

    But key to all of this working is the neuroplasticity of your mind. It’s widely conceived that you need huge willpower to resist the temptation to continue eating. But the simple changes in the way you think about food described above is what ensures you’ll get to that stage where your stomach adapts.
    Neuroplasticity is the brain’s ability to form new cortical maps – linkages between series of neurons – in response to various scenarios. ‘Neurons that fire together, wire together,” is the basic principle on which this idea is built – so reminding yourself that

    1. You like food, but hate that fatty, full feeling afterwards
    2. You like food, but often shovel in the last few bites just for the sake of it. And that
    3. You enjoy meals even more when you really take your time to savour the meal

    for just a few days in a row, will start forming these cortical maps. In weeks, these cortical maps become so solidified and prolific – they become your automatic response. You won’t have to think these things anymore, you’ll already, subconsciously believe them. And though weeks of resisting temptation seems hard to do, because it

    1. Is coming from YOU telling yourself these things;
    2. Because your cortical maps are forming and becoming more and more solid over time, and
    3. Because you’ve got a long term goal, which causes more dopamine to be released each step you take towards it –

    it’s actually quite easy to do. They’re subtle, small changes to how you view food, but combined, they make a HUGE difference. It’s the difference between going into a diet, hating life and having to force exert significant willpower to control yourself, and eating what you want, but slowly, and surely, changing your mindset, and letting your brain lose the weight for you.

    Remember, thinking is HARD. We’re lazy, and we don’t wanna work, because your brain consumes oxygen. But if you understand HOW the brain works and learns (pretty much everything we do and get better at relies on this neuroplasticity), and you make changes that make your NORMAL thought process a HEALTHY one that DOESN’T REQUIRE willpower to do… Well being healthy BECOMES the lazy, easy thing to do.

     

    And you know what? It worked. In January this year, I could eat a whole pizza, and I’d go up for second servings when lamb curry was made at home. Now… I can still do a half pizza… maybe more, but only when I feel like it. And I barely finish 3/4 of a plateful of rice and curry (I used to eat 1 – 1.5 lol). That small change in mindset resulted in a huge reduction in my calorie intake per day. And it’s the main reason why I’ve lost so much weight AND KEPT IT OFF without trying.


    Making Healthier Choices:
    Me – I’m a foodie. I like trying different things, new cuisines. And I like variety in my day to day life. I also like my meat, hate salads on their own (chemo’s changed my taste a lot – I used to love the taste of lettuce… now it tastes like dirt at times) and I like eating carbs like bread or rice with meals. Who doesn’t really?

    With these simple changes, I was able to eat all these things and still lose weight.

    But I knew I could stand to benefit from eating generally healthy foods… so again, I took a step back, questioned my current habits, and made small changes to my mindset on food, which helped me eat more healthily too, without depriving myself of the pleasures of life. 

    Carbs… I did like them, but what I liked more was what I was eating with them.
    So I changed the portions around, added more fillings or curries, whatever I was eating at the time and reduced the proportion of that to however many slices of bread or spoonfuls of rice I’d eat with them. Again, this happened over weeks, not instantly.

    With  salads, whose taste I couldn’t stand post chemo, I started drizzling, sometimes dumping tasty dressings based in oils (luckily regular olive oil is good for you), and added things like cottage cheese or olives to make them tastier.
    Juicing, though it gets good vitamins and veggies/fruits into you, was too much of a hassle to do regularly, especially cleaning the damn things. So I started looking around for good fruit/vegetable juice mixes with no added sugar or preservatives and came across this brand, which uses pressure instead of preservatives, and doesn’t add sugar to the mix and saves me time too. There’s bound to be something similar in your location!

    I liked variety in my diet, and that was good. So I picked cuisines to eat regularly that were easy to prepare, and tasted good and were still healthy for me – things like tacos or stir fries (which have good amounts of veggies, are easy to cook, low in carbs and have good, but not excessive amounts of meat) and I mastered them. They’re like a staple to me now. And I don’t hate eating unlike most people who diet – so I maintain this healthy lifestyle still, to this day.

     


    I couldn’t believe this came from CostCo either when I first tried it. But I highly recommend it – their Kale/Sweet Potato/Quinoa cous cous salad.

    Taking out the Junk Food

    To be honest, I haven’t taken out all junk food. I probably eat junkfood once a week now, still. But I lost all that weight while eating junkfood every few days.

    Still. Junk food is junk… food. How did I reduce the amount of crap I ate?

    Well I mean I looked at them, from that step back, and asked why I used to have that crap so often… I mean they do taste good, and they are cheap and easy to prepare… But I hated that “fat”, “oily” feeling I had after eating a packet of chips, some chocolate or a burger or box of chicken from KFC. 

    I didn’t cut them out entirely, which many people do, instead I only got a few small bits and pieces from fast food places or fish n chip shops, every now and then, and had them alongside other, healthier stuff. KFC – I made sure I had that with these pre-made salads I found in CostCo which complimented it perfectly. With the chocolates, and chips, instead of gulping down a handful or packs of tim-tams at a time and then feeling bad afterwards, I shared them around with other people, or scabbed a few chips or bites from friends instead of buying a full pack and feeling like I had to devour it. Those small changes made me eat healthier (and also saved me money too – sorry guys). I still got to enjoy the taste. But I sidestepped feeling crap!

    They are easier to cook, I guess, and many people just don’t have enough time to cook – but those meal suggestions I made above really help with that. Another thing that makes cooking easier for me is marinating meats and eating them with salad or veggies or a good slice of cheese (which acts as a side dish for me – I love block cheese and it’s high in proteins too so it makes you fuller quicker). I marinate a huge amount of meat in tandoori paste, or honey soy dressing – whatever I feel like – leave it over a few days (the longer it marinates, the better it tastes) and cook it in meals with this simple frier/grill which only requires me to flip once and makes meat really tender too and it’s done quickly. It’s quicker than a drive out to the closest McDonalds, and takes only a few flips in total to make it. 



    These small changes to how I viewed eating, small changes to my mentality, was all it took to improve my diet drastically. I haven’t cut anything out, I’m not hating myself and making myself less likely to succeed by following strict diets and better meals is a MAJOR reason why I’ve lost so much weight and why I’m so healthy right now too! 

    Improving My Fitness/Exercise Habits:



    When I started trying to get fit after my second transplant, a year ago, I told myself I was going to take it slow and build up from there. After my first transplant, I pushed straight into weights and basketball, I didn’t even focus on getting any endurance back before doing so and in the end, it didn’t help me get healthier… It just made me frustrated (because I wasn’t improving much) and probably made me sicker overall too.
    This time around though, I didn’t have a relapse, and lower blood counts stopping me from improving. What I did have was excuses and laziness and self-consciousness about my abysmal fitness, which made me not train consistently, which made me frustrated that I wasn’t getting fitter, which made me lose the will to get fit – initiating a huge cycle where I’d get motivated and exercise for a week or two and then stop, only to repeat it, again and again.

    Taking that First Step. 

    Well, changing how I looked at things helped me get more consistent in my training. Motivating yourself to get off your bum and start is the hardest thing to do when exercising. But by changing your perspective on exercise, from a thing that is painful and excruciating to do, to something that you can build up on – something that gives you more energy throughout the day – gets you over that initial burden of getting up and doing that first set. Looking at your long term goals becomes really important here. Remembering to focus on the fact that you will get there – in time – as long as you’re doing the right things OVERALL, as opposed to expecting to beat your PB every session, ensures you won’t give up when you face failure – instead, as you’re prepared for these, you’ll be picking yourself up.

    It’s when you have a bad, or disappointing workout that this patient thinking really helps. Instead of getting down and sad about it – you’ll be ready to go the next day, because you’ll know for that 1 bad workout, you’ll have 5 other good ones, and you’re still be heading in the right direction.

     

    Another great tip – do something FUN! You’re much more likely to commit, and form good habits, if you make yourself accountable. So get a gym buddy, or join a team! 3/4 adults played sport growing up, but only 1/5 play as adults. Why is that?

    Start Easy and Build Up From There


    When building up from scratch, which I’ve had to do plenty of times, looking in the long term REALLY helps. 
    In my case, and that of many other patients who read my blogs, treatments and concurrent infections would bring me back to starting position, walking and body weight exercises were excellent in building me up. I started with push-ups, squats and sit-ups in front of the TV. Those things gave a good burn and made me feel like I did something and gave good, constant improvements when I did them consistently too. I didn’t just like walking for no reason, so I used my mind and my interests to my advantage and started walking down to the river with a rod in hand, looking at the tides, watching the small fish and how they moved, and getting good ideas and experience to improve my fishing. Basketball – my favourite sport – always keeps me motivated, and watching a good basketball video or movie would always get me up and ready to have a shoot around. You can use whatever passions you like. Cycling, rock climbing, diving, whatever you want to motivate you to keep you in the gym or in the pool or on the track.
    Make exercise time valuable. I know many students find it hard to sit down and study – so download your lectures and put them onto your music player and go for a walk or run. Same thing goes for podcasts of your favourite radio shows, or just blasting your own music. Makes it easier and even fun to train – in fact, Jana Pittman, a classmate of mine does this to keep up with medicine and still train at an Olympic level. 

    The power of incidental exercise doesn’t just stop at boosting the calories you burn a day, but also extends to formulating strong, neuroplasticity-moulded, attitudes towards exercise. Each time you pick the stairs – you make yourself more likely to pick them next time!

     

    Don’t Be Shy, Or Worry About What Others Think of You


    Taking that first step was hard for me. After chemotherapies, where I’d have to start from scratch, I’d always feel embarrassed and self-conscious at how little I could do, and also about how weird I’d look. You may feel the same way when someone racks up more weight than you can squat on the bench press, or when someone laps you in the pool or when someone blocks you on the basketball or volleyball court. Whenever I wanted to work out, I would always feel the stares of others on me and that stopped me from wanting to go out and get healthy in the first place. When you take a step back and see it in another way though, you’ll see that you’re stopping yourself from being the healthiest and happiest version of yourself because of what other people may be THINKING about you. Read more about how I managed to get past my self consciousness and become the most confident, happiest version of myself here.

    Overall – losing weight and getting fit and healthy is NOT something hard. The only thing standing in the way of you getting there is YOU and your mindset. Get your mind on your side and the rest will become easy. 

    Those fad diets and boot camps can help lose weight and they do work. But they’re not easy to maintain – they’re not for everyone. Using your mind to your advantage is the best thing you can do to help you get healthy.


    Myself – I’ve gone down from 97kg in November last year to about 80kg now. And I’m in that luxurious position of needing to gain weight (to keep a good amount of fat, which makes the injections I get in my belly easier to handle, and lowers the chance of bruising there too). 


    I talked about this on radio actually – have a listen to it here:

    Feel free to leave any tips of your own down here. To help me and others along on their journey to get fit and healthy.

     

  • My Social Enterprise – How it’s going to save HUNDREDS of thousands of lives. Get To Sleep Easy!

    My life changed a few years ago when I was told, “Nikhil, the good news is you’re 17 and you have leukemia, but the bad news is you’re 17… and you have leukemia.”

    Then I asked him the one question every cancer patient dreads: “What are my chances?” He looked at me, sighed and said, “10-20 percent that you’ll live the next five years.”

    Somehow, I got through that.

    But it did get close. Quite a few times actually. And now that I’m a medical student and cancer researcher, I can appreciate just how close “close” actually was.

    During my treatment, I suffered from many infections and falls, a few pressure sores, and a deep vein thrombosis (clot). Three of these four things could have killed me. One (those pressure sores) stayed with me for nearly two years, and even stopped me from swimming and washing my back.

    Nikhil with nasal prongs on

    The thing is, these things are common complications seen in hospitals:

    Pneumonias (depending on the type and treatment) can affect 70 percent of cancer patients.

    Falls will seriously injure nearly 1/10 people over 65 admitted to a hospital.

    Deep vein thromboses affect up to 20 percent of those who are immobile, and will kill 15 percent of those who have them dislodged.

    And pressure sores affect seven percent of those who enter hospitals (with nearly 1/4 in ICUs).

    Each of these problems cost literally tens of billions to hospital settings, just in America alone! And most of these are unnecessary. Even one that often isn’t for cancer patients (pneumonias) can be reduced.

    How? By simply sitting up. That simple act can reduce the severity and time spent in the hospital by 35 percent — more than two days in the hospital on average.

    But although they’re recommended by physicians and have surgical guidelines around the world, and although I knew in the middle of chemo that any infection could kill me, I still couldn’t find it in me at my sickest and tiredest state to walk those few meters to my hospital bed.

    And even though patients are told to exercise (or at least move their legs around to prevent dangerous clots where they happen most), and nurses are told to move patients around to prevent pressure sores, and patients are encouraged to wait for nurses’ assistance to get up when particularly weak, or at risk of falls… right now hundreds of thousands are falling through the cracks.

    Image may contain: text

    I knew I had to do something about it. I’d lost too many friends to these preventable issues myself. And I saw a perfect way to do so — by changing something that hasn’t really been changed in decades.

    The hospital bed.

    I’ve created a version of the hospital bed that will reduce, perhaps even eliminate, the incidence of all of these! How? Well, I explain in this video.

    The features on our beds not only make lives more comfortable for patients, or those who are being cared for at nursing homes or homes, but they also save lives.

    The inclining ability of the legs will increase blood flow to vital organs in times of shock. The decline feature, when combined with the incline of the head, will make this a chair that encourages patients to sit up much more effectively than any distant hospital bed could. Hence, reducing the rates and severities of infections.

    The massage prongs will stop blood from pooling around the legs, which will reduce rates of blood clots. The contouring features and weight sensors will reduce tissue pressures where they’re highest, thus reducing pressure sores. And many features, such as the slide out rails, embedded charging ports, intuitive IV pole placement and a bed pan chamber, will reduce the need to get up for those who shouldn’t.

    But we’re not only creating this. We’ve also got provisional patents on an adjusting wedge pillow — something that’ll help millions with lung or back conditions, acid reflux, or those wanting to lounge in bed more comfortably.

    I think the best thing about this is that instead of the profits going to my back pocket, I’ll be giving away all of the profits we can towards charity, research and ensuring manual, affordable versions of this get to nations who need hospital beds the most. Personally, I feel relieving pain and putting a smile on someone’s face is so much more fulfilling than money could ever be.

    Image may contain: text

    We’re already partnering with Engineers Without Borders to create a version of this bed that can be produced cheaply, and close to source!

    Plus, this is something that’ll save hospital systems money and lives.

    The thing is, for a project this big to become a reality, we’re gonna need lots of help, so feel free to donate or buy some products that’ll help you Get To Sleep Easy (we also have some pretty cool merchandise, too.) You can also follow our journey through our email list, on Facebook , Twitter or Instagram.

    And watch out for a pretty hilarious campaign we’ll be releasing next week called #GiveMeAWedgie. We’ve got a bunch of people ready to help share that out, so join us!

    I hope this can help as many people out there as possible. I decided to study medicine because I knew I could make an impact on peoples’ lives. I’m working on some interesting immunotherapy cancer research because I saw you could save potentially thousands of people at a time… if you discovered something awesome.

    And something like this could save millions of lives, and do so continuously and sustainably, for years to come.

    nikhil medical researcher and student

    I hope what I’ve said convinces you to help make this vision a reality.

    Nikhil Autar was diagnosed with acute myeloid leukemia at 17 and given a 10-20 percent chance of surviving. Despite that, he made it into a medical degree at 18, and is currently doing medical research and running his social enterprise, Get To Sleep Easy. You can find him here or at his blog, Musings of a Med Student Patient.

  • Cancer Patient Plays Well, and Wins Big For Charity.

    Last post:                                     My Story:                                         Next One
    Recently, I was given some pretty bad news. I’ve got bronchiolitis obliterans, a lung manifesation of the graft versus host disease that plagues me after my bone marrow transplant. Essentially, it’s my donor’s immune system (in bone marrow transplants, you inherit the blood making cells of your donor, which includes their white blood cells) attacking me. This time though, in the lungs. Over time, it’s something I’ll have to watch very carefully, as the survival outcomes for this aren’t that great, and it’s something that progresses too.As you’d expect with anything of this nature, I was scared. Anxious, without even knowing it. Exams were going on too when I got the news, so I didn’t even get time to properly take it in, yet alone look it up. When I did, I realised how bad it could very well get for me. And I got even more scared.A range of emotions go through you when you hear bad news. You’d think I’d be good at dealing with these things now, given how I’d dealt with my cancer, and then my relapse and then a third cancer, and everything else (and there have been a lot of other things too) on the way. But though that attitude I took on board after all those things does help in the long run, it’s almost impossible to make some good come out of this when it just hits you. Experience isn’t exactly much help with these things. 

    But as these things happen time and time again for me, what seems to hit, and stay with me most, and longest, is a sense of finality. 

    Dealing with the leukaemia was the easy part, I feel often when I look back. The chronic effects of this all, combined with the frustration and grief (loss is loss; grief needn’t be associated with death) it brings about, makes me prone to feeling this way. 

    So I had this crazy notion a few weeks ago. What if this was the thing that brings me down? What if one of my hundreds of other conditions caused something like this too? Who knows how long I had left? 

    So why not live out my dreams?

    For those who don’t know, I play poker. I started about a year and a half ago, when the cramps I get, that nowadays leave me debilitated and in pain most nights, started progressing. I needed something to do. Something to get my mind off things. So I started playing this game I learned years ago, something I’d played just for fun and in passing, at our local club. I was gonna cramp sitting at home anyway. Why not play poker while I got them? 

    And slowly, but surely, I got better at it. I started playing buy-in, tournament events (I’d played for free for the better part of a year,  and win some money in the process). Nothing huge. In fact, til just a few weeks ago, the highest buy-in I’d posted was a $25 one. Most games I played were either free, or under $15. And til just a few weeks ago, I’d won over $6000, from less than $1200 in buy-ins! $2050 of that went to charity – as a reader of the blog had insisted on donating something to me, and that it be used for ME to have fun. That act stays with me til this day. The reason she wanted me to spend it on me just hit the nail on the head in terms what I was feeling at the time. But I couldn’t just take someone’s money in good faith. So I decided to donate all the winnings from her donation to charity instead! You can follow that journey here! 

    So, where was I? Ah, right. My dream. Well, for a while now was to go and play in the World Series of Poker’s Main Event. A HUGE poker tournament with over 6000 entrants every year, a first prize of over $7,000,000 (and a prize pool of over $60,000,000), but most importantly, one that attracts the world’s best poker players!


    I knew I was gonna play it at some point in my life. But after hearing the bad news a few weeks ago, I desperately wanted to do it this year. Even after the inital fear and that feeling of doom dropped away, I knew that life could turn at any moment, especially in someone like me. Who knows if I’d even be healthy enough to play the gruelling, 7 day tournament next year??


    Yet I was still afraid. The buy in for this was $10,000! I’d be playing some of the best players in the world! People who played this for a living! I knew I was good. But was I that good? What would my parents, what would everyone around me think? Was it really worth spending a good chunk of my savings on this??? 


    In the end though… this happened. 

     
    Yep. I did it. I booked the next flight out, for me and my brother, and the next day, we were there. 
    And the result?
    This. 
     
    I did it. I’d studied my butt off (because contrary to most peoples’ perceptions, poker is a game of incredibly complex strategy, math and risk stratification), read all my stuff and played the most focused, quality poker I’ve ever played, for 10 hours a day, for just under 40 hours and not only made a healthy profit, but beat out thousands of poker professionals (including some of my heroes – who I got to play against too!) to get there!
    It was the best couple of weeks I had in my life! All because I made this decision on a whim. 
    I think Jim Carey encapsulates every lesson you could take away from this in one minute.

     

     

    \
    So. What am I gonna do with the winnings? 

    Well, it’s not a $28,000 profit. Remember, $10,000 was used to buy me in. 

    But that’s still HUGE for me! 

    10% of the money goes to my brother. He’s long been suffering alongside me. Indeed, more than me, I’d say. It’s not easy going through cancer… but I reckon it’s MUCH tougher watching someone you love have to go through something like that, while not being able to do anything. He’s suffered not just the emotional and physical burden of looking after me, but also given up much of his life, just so I may have a semblance of a normal one. I can never thank him enough for that. But I can definitely try!

    Around 10% will be going to my cousin, whose family took me in for a couple of months, and treats me as their own, til this day,  and my father, who’s turning 50 this year. 

    And 10% will be going to charity. I’m an effective altruist, and don’t just believe, but KNOW that the best way we can make a difference in our lives is to give to the organisations that change the most lives per dollar spent. A great website actually does the research for you and ranks these charities for you. Which of these top charities am I giving to then? 

     


     
    A great summary of Effective Altruism – a way of giving that makes sense!

    In a way, all of them. Because, also something you may not know, recently, I started up a social enterprise – a charity that works as a business and distributes all profits to charities – called PlayWell! It’s been slow work, but as soon as I’m a little more healthy, I can dedicate more to it. And it’s well worth it. Because this thing could change the world. 

    Imagine being able to make those hundreds of thousands of hours you‘ll spend in your lifetime on entertainment achieve good. Well, on PlayWell, you can. Through many direct and indirect ways, your every action on this entertainment app will allow you to make the hours you’d be spending on Facebook, or YouTube, or Tumblr or Instagram – the things you’d be doing anyway – make money for charity! Every tiny action of yours will generate revenue for charity! All while you enjoy watching stuff from your favourite stars, supporting them, and discovering the best content on the internet! If you know an internet star/a budding one – let them know they’re invited to join now! Hopefully, it’ll be a thing – sooner, rather than later, and help charities make money in a completely different, currently untapped, way!

     

    If you know anyone who’s a budding/current online star, who wants to make more money while helping the world, tell them to sign up at www.playwel.org!

    And the rest of the money? Well… that’ll be put to letting me play Next Year too! And in bigger tournaments for the year to come! At least 10% of all my poker winnings from this day forwards will be going to charity. And I’ve proven to myself that I can play with the best of them. I’m sure now that this is an investment that will pay off. 


    While I was in America, I also visited some amazing doctors. And it’s not too bad news for me overall, and the lungs! A doctor who I get second opinions from routinely saw me in person for the first time, and said I looked much better in real life than on paper – which was great for my prognosis with this disease. The lungs are still iffy, all agree, but it’s not progressing, and indeed, may not progress in the near future, if I convince my doctors to get me on some drugs I’ve been telling them to put me on for months now... If you sense frustration there, you’re right. One of my doctors described the care I’d been receieving from my recent doctor as “neglect”… And though there’s one little issue left that may be concerning, overall, it’s still great news!

    And most importantly, I feel good! This trip has done so much for me. No matter how much I tell myself I can still do a lot – something that’s kept me going despite the frustration this disease brings – I still occasionally get brought down. Now, I’ll have at least one week that can remind me that I definitely can. Hopefully, that will help me continue to try and do as much for this world as possible.

     

  • 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.

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

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


    They removed the lesion that was there and the worst case scenario – a relapse of my very aggressive original leukaemia has essentially been ruled out. Whatever the tumour is, that’ll likely be all that’s required in terms of treatment. 


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

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

    But let’s save the best for last… 

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

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



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

     

    Words that were said to me, just last year. In truth, there were things out there that could, and indeed, have helped. Check out an entire album, asking what the best and worst things patients’ doctors have told them. 


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


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


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


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


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


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


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


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

    Great, right?!



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


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


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

     

    Surgeons huh?

    A shocking statement from a chronic illness patient, from a survey we conducted of chronic pain, cancer and chronic illness patients on patient-doctor relationships.  Click here to check out the entire album.

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


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


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


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


    But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather… veterans like me get scared and anxious too. Even a quick explanation as to WHY you couldn’t get to me would have saved me heaps of pain.


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


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


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

    Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too.
    I’ve dished out a lot of dirt now… and this is just annoying Doctor #1. I could go into Doctor Annoying Number 2 into extravagent detail; and some of the words, some of the things I’ve faced from doctors in the past, I could go on for pages about; but I feel I’ve done enough of that for now.  something else very alarming today…. but I understand how he can be very busy too. 
     
    Though I’ve had many bad experiences with doctors at various stages, in various circumstances, in the past, I’ve been blessed to have most of my experiences with doctors positive, even life-changing in nature. 
     
    The words that changed my life were uttered from my first haematology doctor’s mouth, the conversations we’ve had over things ranging from life-and-death decisions, the future of medicine and treatments, to exchanges of fishing tales and adventures tantalisingly human in nature. The confidence my transplant specialist had in me to choose the medication that’s kept me alive today and then fight for my right to get it completely subsidized came down to an email exchange between him and I that he was happy to facilitate in his own time. 
     
    I’ve been blessed with not only the best parents, siblings, nurses, staff and friends in the word, but also some of the best doctors too. 
     

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

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

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

    My reflections… my feelings as I went through what I felt may well have been the last time I saw anything.
    During this second time in particular, as I was rushed to the hospital, experiencing the same things as I did the first time, seeing the same results from the same tests coming back, I was in one of the most sullen moods of my life. I knew what was coming. And I knew that there wasn’t must we could do to change the results of it. All I could do was sit there and wait for what could have been the last flashes of lights I’d ever see go by in this alien, dreary waiting room. 
     
    Yet when I called Claire during that time… she showed nothing but concern and care for my welfare. Me. Just one of who knows how many patients she had she showed love and concern for where she had every right to be peeved, pissed off and even violated for being called up at 5am with information of this going on. 
     
    During that crisis itself, and in the weeks following up, she was her usual amazing self. Luckily, the vein blockage that caused my left eye to go blind had cleared for some unknown reason and I hadn’t lost both my eyes. And in the weeks following, she was happy to see me every week during this time, and even offered and decided to see me for free in this period. 
     
    Every appointment, as usual, we’d discuss the findings as she saw them, and she did more than explain the goings-ons of my eye to me as the details emerged on the screen, she made sure mum and I both could see the differences; the changes in the scans, actively involving us in the process and making us feel like we had control of the situation. Something many, if not most patients, wish they had in their interactions with doctors. Something that’s indeed, been linked with better outcomes and survival times in diseases ranging from colds to kidney failure to advanced cancers. 
     
    We couldn’t thank her enough for what she’d done for us in those last few weeks/months. She’d transformed this tragedy that would have stayed with me for life into one of the most inspirational experiences of my life. And we thanked her in kind by giving her a pair of gold bauble-style ear-rings; a wedding present to her (she’d recently been engaged we found out from another patient of hers), as during her eye examinations, she always had me look at her earrings, and I always made sure to point out the style she’d chosen to wear on the day (she always picked quirky and extravagent ones to “give her patients something to look at). 
     
    We gave that to her a month ago, looking forward to my next 6 weekly appointment. 
     
    But somehow, during the crisis that was last week, she got wind that I had yet another cancer. And when I saw her face in my window the day I’d gotten my bone scans (indeed, she was the one who deciphered them for me, and let me know that they confirmed it was another cancer I had), I was shocked. I couldn’t believe it at first. But there she was, the earrings we’d gotten her glimmering in the light, smile bright as ever, beaming at me, with flowers in hand. 
     
    “How come you’re here? How did you know what was up?”
     
    “I’d heard about this happen, and I wasn’t far away. I live right in the middle of Sydney, really, so it wasn’t that hard to pop in.” she exclaimed cheerily, handing me a set of fake flowers and then taking them from my hands, still limp from disbelief and organising them on my noticeboard of cards and encouragement with my similarly awed mother. 
     
    I was astounded. I know personally the amount my doctors, my two haematologists leading my treatment, cared for me, as they cared for any of their patients from deep conversations with them about treatment and just life. But even THEY hadn’t gone this far to show their concern. Now that I think of it though… I do remember my first doctor, the one who’d told me those words, “The Good news is you’re 17 and you have leukaemia, but the bad news is… you’re 17… and you have leukaemia,” walking in shyly to see me and wish me well before one of my procedures at a completely different hospital, on his day off, one day. He played it off cool… but he was there to specifically see and talk to me…
     
    The generousity of these souls… their sheer care for the people who’d been thrust into their hands damaged and sick and their nurturing huamnity to bring us back to health… was just staggering. 
    That sort of care these 2 amazing souls had didn’t just extend to me though. My first Haematologist told me his code one day in a candid moment. He treats “Every single person as if they’re his father, brother, son, or uncle”. And the way he treats them backs this up. He goes to every extent, doesn’t care if he steps on toes or upsets people; he’s renowned for giving tongue-lashings to clerical staff who wouldn’t budge on red tape, and every time you’re in serious trouble, you’re glad to have him there because, if you needed it most, he’d ensure you got that CT scan, MRI or procedure done, no matter what others would say. 
     
    People call him eccentric, difficult to work with, rude even. But my Dad saw him immediately for what he really is. “The other day, before your first chemo, I came across him in the hallway and asked ‘Doing anything this weekend, doctor?’ attempting to make small talk. He just stared off into the distance and walked off the other way. And I wasn’t offended at all.” 
    “Why,” I asked. I’d only just met him for the first time the other week. To me, in the days after being told the bad news so ‘brashly,’ he was an eccentric, off-putting doctor who had, in my own words, “No people skills.”
    “Because I know that the reason he did that was because he was busy thinking about a problem he had with another patient. And that patient in his mind may have well been you. With that in mind… Who do you want treating you?” 
    Claire, my opthalmologist, displays the same level of compassion and care for ALL of her patients too, I know, through this enlightening chat we had with another of her patients at during last visit. She was carrying a bunch of flowers, the same variety, I’m realising now, as the one’s hanging on my noticeboard in this room, and my father made a remark on the arrangement. 
     
    “Yes, they are pretty aren’t they?” the old lady smiled. “Claire got them for me, bless her. My son had died this month 20 years ago, and I mentioned that I was planning on visiting his grave to her during my last check-up last year. The dear soul remembered… Bless her.” she sighed, wiping off a tear…
     
    It’s no wonder she always talks about being blessed and having the most adorable patients ever, “a veritable gang of second grandmas” as she puts it… 
     
    The humanity of that action… the sheer compassion and thought it showed… goddamnit… 
     
    THAT’S the kind of doctor I wanna be. 
    Hell… that’s the kind of PERSON I want to be!
     
    Random acts of kindness have the power to change lives. I’ve said it many times before… but these guys transcend that and make every action as good as possible. It’s bloody amazing, and I’m honoured to be affiliated with souls like this, and one day, aspire to be someone just like this.
     
     
    I know it’s hard to display this level of care and compassion everyday, for everyone during every circumstance too. But I know one thing as well… it’s bloody worth it. And I’ll definitely try to be as good a person, as well as a doctor, as I can be for everyone… forever. 
     
    But for you doctors, medical professionals; just ANYONE reading this, you don’t have to feel the pain, or the worry of getting a cancer to understand this. You don’t have to experience it first hand, as many doctors, such as these, end up doing before they themselves decide to write an inspiring article and change the way they practice. Hopefully reading this will make sure you try and do these little gestures of kindness without having to go through something yourself to get there. You don’t have to examine or read through textbooks and journal articles to find out how you should deal with your patients. All you’ve gotta do is Just Be Human.
    Just be nice… wherever you can.
    This profession can be tough. It can drain you. Make you feel like you’re not making a difference after years of seeing the same patients with these same issues come to you over and over again. But take it from someone who knows, from someone who’s been there. You will ALWAYS be able to make a difference in others’ lives. No matter what the circumstances. 
    It wasn’t the medical decisions that made my doctors special… no, what made my doctors special to me – were those tiny little things they did, which combined have changed… even saved my life.
    At one point, at my lowest, it was only knowing that there was a doctor out there who cared for me that stopped me from doing something I couldn’t take back.
    You could know everything there is to know about medicine and biology. You could be the GOD of medicine, but you still wouldn’t have been able to save me that day. Only that man could. And I think this goes to show that making someone feel cared for is the most powerful weapon you have on your side.
    And if you can spread that humanity in a place, at a time at someone’s life where there doesn’t seem to be much going around – you WILL Change Lives. You WILL make a difference. And if you’re ever struggling to find meaning in your life – be you a doctor or not – these acts will change YOUR life too.
    I hope this helps you see that.
     
     
     

  • What’s Going On. My Eye-Opening Experience. And How I Got Through It.

    Last post:                                     My Story:                                         Next One

    Latest Updates at bottom of post. Video of this here:



    So this morning, I left a weird status update on my personal Facebook. 

    I know a few friends and family are worried about this, as some of you reading this may be, so I’ll explain. An Ophthalmologist is an eye surgeon/doctor by the way. 
     
    2 days ago, just before I slept, I started seeing red dots everywhere in my left eye’s vision. You couldn’t see it on the outside, later, I’d find out that was because it was deeper down in the eyeball, and I was just about to sleep anyway, so I fell into bed and slept. The next morning though, on the way to some treatment, I noticed it was still happening. 
     
    The red dots were everywhere in my left eye’s vision field. They’re “dots” and “lines”, not flashing or moving around. Similar to these “floaters” below that you may see sometimes, but bright red, usually shorter than the lines seen below, and there are thousands of them all over my eye – so much I could only see outlines out of that eye. Trying to read anything even centimetres away was impossible as the red dots would blur out the word outlines completely. 
     
    So when I arrived at Royal Prince Alfred’s Hospital for my treatment, I mentioned it to the nurses, and they agreed that before I get anything done, I should figure out what’s up there. We postponed the treatment for the morning and saw an ophthalmologist. 
     
    After a few scans and tests designed to look deeper into the eyeball, at the back of it, called the retina, he proclaimed that I likely had central retinal venous occlusion. What that essentially meant was that the back of the eye, the part responsible for picking up and processing sight and colour, had a vein being blocked by something inside it in the middle. 
     
    Digital retinal scans of the back of the eye. Left one is normal, the right shows central retinal venous occlusion (what I have). The bright bit is the optic nerve, which takes signals from the eyes to your brain for processing. The darker patch in front (to the left) of it is the macula, the central part of the retina, the back of the wall, and the red lines around it are all blood vessels.
    In the right, diseased eye, as you can see, the vessels are more defined, they turn more and more on themselves and there’s a little bit of bleeding there amongst them too as the blockage in the vessel causes blood and fluid to leak out. Below, if you’re confused, is a basic outline of the vision.
    Some eye anatomy and terms in case you’re slightly confused. The right is the eyeball side we see if you’re wondering.
    The eye and vision outside of the venous occlusion was fine. But the fact that it had happened in me, a young person with no other risk factors other than my graft versus host disease (from my bone marrow transplant), made it scary enough as it was. The treatment and outcomes for the disease, including blindness only made it worse… 
     
    But the next morning, at 4am, when I posted that Facebook post, was even scarier than that. When I woke up then, the redness had, if anything, gotten worse, and there was a long black line of black in my left eye’s vision too now. A stringy line followed by a ball on the end just above my central vision. My ophthalmologist had warned me that if it had progressed or if other signs had come up – go in and see them as soon as possible, or else, see emergency. And when I got there in the morning, they were concerned it was a retinal detachment; an acute emergency that would require immediate surgical intervention. 
     
    When I saw the eye doctors, they gave me this much relief; it wasn’t that.
    But the central retinal occlusion was still there. If anything – it had gotten worse. Under scans, the macula was now swollen. And while I saw the specialist the second time, he explained to me the treatment and the outcomes there in more detail too.
     
    First off – I’d have to get an angiogram – a scan which tracks the movement of blood through vessels – of the eye which’ll show the extent of damage, and show if my retina was “ischemic”, or “not getting enough blood to the point that it was dying” (blood = nutrients and oxygen, which almost all cells in your body need), in some regions. If it was, which, due to the swellings and progressive loss of vision in that eye, was likely at some level, then I’d have to get laser therapy (called laser photocoagulation) to “zap” and force any bleeds that may be there to stop; as well as reduce the progression of scarring. 
    On top of that, injections into the eye (OUCH) of anti-VEGF (Vascular endothelial growth factor) – something that blocks the formation of new, in this case, dangerous blood vessels which can occur in some parts of the body if they’re not well perfused with blood would also be required.
     
    These therapies are pretty good at reducing the chances of progression and improve people’s sights over months of treatment, but there is still a chance of glaucoma; a more serious, chronic disease that can cause blindness.
     
    But the fact that I got it early means that I can likely avoid that, or even if I can’t, I’ll be able to manage it. Many people catch glaucoma in late symptoms; because it progresses slowly, it’s called the “Silent Thief of Sight”; but there are many medications and options I have to reduce its effects if it comes to be. 
     
    But damn… that treatment will not be fun. 
     
    The Laser Photocoagulation, though permanent, and only requiring a few therapies, often causes peripheral vision loss, reduced night vision and eye bleeds; and can rarely cause severe effects too. And the injections can cause severe issues too, including loss of the eye, formation of cataracts and pain too. 
     
    ouch doesn’t do this justice…
    But I surprised myself by how I took this all. 
     

    First of all:

    When I was told the bad news today, I took it all in stock and found myself doing the exact same thing I did to rationalise and focus on the things I could control, when I was coping with the shock of my initial diganosis with a life threatening disease. 
     
    Almost automatically now; from the sheer repetition, the sheer amount of times I’ve had to do this I guess, I found myself 
    (1) taking a step back, detaching myself from the unproductive fear and negative emotions (I had what I had now; and those thoughts, originating from MY MIND, weren’t doing anything but making me feel worse about the situation, right?)
    (2) focusing on, questioning and analysing my situation and my fears and doubts until 
    (3) I could see what the best thing I could do for myself going forward was. 
     
    In this case – yeah, I had this horrible announcement, and these horrible treatments in my future, but what was worrying and stressing about what I couldn’t control, the past, and the pain in my future, gonna do other than make me feel bad about myself? Nothing, right? 
     
    So I should focus on the things I could control. My questions of my doctor. Finding out if there’s any alternatives I could take. Researching current treatment modalities, familiarizing myself with the treatment and figuring out how I could best cope with it all. 
     
    Being happy and positive in all the occasions I could was another thing I could control. And all the occasions I could meant every occasion, every second of my life, except for moments of shock after bad news and the moments of pain that comes from procedures. Being aware that those moments were coming wasn’t leaving me in despair, he fact that I could acknowledge they would come meant I was prepared; I was ready for when they did; and when they did, not only would I cope with their after-affects better because I was ready for it, I’d be able to get through the actual procedures easier too – because I’d be looking at the big picture. Something I talked about here: 
     
     
     
    I was already looking at the bright side of this; the things on my side and the things that this could bring me. Despite all the mental preparation I’d done above, I still had a little fear; but when I took a step back and questioned that fear, I realised that the fact I’d caught it early, and been so proactive in getting on top of it (I’ve even arranged for my angiogram scan to be done even earlier – tomorrow actually – watch my Facebook page for updates) meant I had very high chances of avoiding any major issues like blindness and possibly glaucoma too. Though it may affect my going to uni for yet another year or at least interrupt my study – the fact I’d gotten it now, early into the semester, made taking that year off that much less burdensome – the fact that I’m still young meant I had years to get back into it and even if it did stop me from attending, it could allow me to focus on other things too. And I knew I could control HOW I DEALT with my situation. If there’s anything these experiences have taught me – it’s that our minds are powerful things. We and only we could control how we felt at any time in our lives; and when you can, why not be happy? I proved this to myself again today. When describing what I was seeing to my doctor the next morning, I realised the black ball with string attached to it” floating around in my left eye looked exactly like a “black semen.” I blurted that out and the doctor, my worried mother and I all cracked up at that. 
     
    This mentality – this ability to see things in “a second, better, more constructive way” – it wasn’t “brave”; it didn’t require “willpower” or “wisdom” to do. All I did to get through this tough time was take a step back, analyse and think deeply about what I was doing and think “What’s the best thing I can do for myself going forwards?” And that’s something ANYONE – including YOU can do to get through ANY hard experience! It may take some time to do – you may not see it straight away and you may need to TALK to someone to get there but YOU CAN DO IT. For ANY struggle you’re going through. 
     
    In this talk I gave, I explained how you can do this for any obstacle you may be facing!
     


     

    Secondly:

    The good that can come of this wasn’t easy to see straight away. But I knew that at the very least – this experience would allow me to see how patients of eye diseases feel, every day of their lives. 
     
    As I was driving in to emergency on the second day, and as the emergency doctor told me it may be a detachment and that I had to be seen ASAP, I was scared I could lose one eye’s vision… and that was sobering, hell, it was scary at first. I was keeping my left eye closed for the journey into hospital. It was too disconcerting leaving it open and seeing red, and a floating black semen flying around. And when I did – I saw just how little I could see in comparison to having both eyes. Naturally, my left eye is weaker, it can’t see as far as the right can. But even then – there’s a whole side of me that’d be lost if I lost the vision in that eye. When I was walking around the hospital room, finding the eye clinic, I needed my brother to stay on my left shoulder and guide me the whole time to stop me from bumping into people or signs or structures. 
     
    It made me realise how much even impaired vision, or half vision can be debilitating and hard to manage. 
     
    We take our vision for granted sometimes… and everything we see – no matter how  – its beauty deserves to be recognised. The very ability to combine the data of 120MILLION cones in EACH of our eyes into something comprehensible is amazing on its own. Macular degeneration is something that affects many older people. This is how the world looks if you have it: 
     


    But if I told you there are currently 39million blind people in the world; 80% of whom DON’T NEED TO BE THAT WAY – and that it costs only $35 to give someone their sight back (click here to find out how), wouldn’t you wanna do it? 
     
    Even if you can’t donate right now, I’m sure you’ll appreciate every second of your sight that much more now for it. I know I am. 
     

    And Third:

    Some interactions with my family today taught me some things myself. 
     
    When I was told this news, and I told Dad about it, at first he went off at me. He asked me “Why aren’t you wearing your glasses? Why didn’t you take precautions!” I have a prescription pair, but as my right eye is fine and I can see clearly, and my left is mildly weak, I don’t wear it.
     
    My immediate reaction to that was anger. Glasses COULD NOT HAVE POSSIBLY prevented this. There was an occlusion in the veins of my eye. Only a broken off clot, or damage to the veins or other structures of the eye for other reasons could have caused that.
     
    So why was this arsehole blaming me for this????
    I was angry – and I let him know it. He always does this. Almost always when something happens – he starts blaming me for it – as if I could have prevented it. Sometimes he’s right. “If you hadn’t gone bike-riding in the middle of the day… you wouldn’t have gotten a sunstroke.” Very true… and that was dangerous. “If you’d taken my advice earlier and put on coconut oil before, your skin may be even better now.” Yeah… well, maybe.
     
    But other times – like this situation, his always blaming me when I cramp, asking “Have you taken your magnesium I gotten you?” when, on most occasions I had, and both my parents admonishments and accusations (“You didn’t put on creme because I didn’t see you do it!”), they get to me cause they happen over and over again. They can’t possibly help – and often – I already had done those things and they weren’t helping.  
     
    So why kick someone when they’re down????
     
    But they do have a point sometimes. As do many people who criticize us. And though I never take criticisms from anyone else personally; indeed, I look at them as an opporunity to improve myself and my ideas, those closest to me, my family, I often ignore and get frustrated by… as many of us do. 
     
    When they’re wrong – they’re wrong and it is frustrating. But not only should I contain that frustration and work on reducing that – I should NEVER let my pride from admitting I was wrong. 
     
    One of my favourite quotes from any book ever was from Christopher Paolimi’s Eragon series. Eragon, the hero, had admitted he was wrong. And wisely said;
     
    “Only if you are afraid of looking foolish, [would I continue to maintain I was right when I wasn’t] and I would have looked far more foolish if I persisted with an erroneous belief”.
     
    NEVER assume you’re right. Always stand to be corrected; or else you risk not only being a fool – but harming yourself for your pride. 
     
    I can stand to improve on that aspect with those closest to me. And I will from now on.
     
    This experience – though daunting, and though it’ll continue for a while now, can still teach me and make me a better person. In fact any experience in life can. 
    But only if we let it.
     

    My angiogram is tomorrow. Wish me luck! But either way it goes – I’m sure I’ll be fine. At the very least, I’ll be happy. 

    An Update:

    What’s going on now, written on the morning of the second day after I wrote this. 
     
    I managed to expedite my angiogram to Friday (the day after I wrote this) in order to get on top of it ASAP and start getting my treatment. When I went to see him though, I noticed concern on his face. After a few minutes of checking my eyes, he concernedly said,
     
    “I think you need to go to Sydney Eye Hospital emergency.” 
     
    “Your optic nerve (responsible for taking signals from the back of your eye to the brain) seems to be a little swollen too now. Either that or it may be affected by it soon, as there is some near there…”
     
    “And the retina, which does the main job of seeing and capturing vision looks pale around the center too…”
     
    “I don’t know what is exactly causing it… I don’t know if it’s bad. But you’ll need a high dose of steroids, with constant monitoring I think…”
     
    Obviously, I was concerned. Not only by the tone of his voice, but by what he said.  
     
    The paleness possibly meant ischaemia, or cell death. Once cells die in some regions of the body… they don’t grow back. And from my recollection… the eye wasn’t one of them… And the optic nerve swelling too… that could mean complete vision loss in the left eye…
     
    So we raced over there, were seen, and after a bit of a scuffle, and phone calls made to my haematologists (as they have mainly eye specialists on deck there they were unfamiliar with my condition and what medications I could/couldn’t take) – I was admitted and given some methylprednisone. 
     
    That alone wasn’t easy… I was up til 3 and woke up at 6:30. 
     
    But the eye doctor’s next visit and check-up were much harder.
     
    My worst fear was confirmed. 
     
     
    There is still some. I can still see. But only hand movements from a few feet away. My peripheral vision is slightly better – but it’s still peripheral vision, I can probably read HUGE letters nearby, and see shapes, which peripheral vision is supposed to do. 
     
    But it STILL sucks. 
     
     
    I dunno if I can play basketball again, ride a bike safely, drive. I don’t know how it’ll affect my ability to read or write – probably… well, hopefully, it won’t do so too much.
     
    I don’t know what caused it…
    So I don’t know if it’ll happen elsewhere. Even in my other eye… sometime in the future.
     

    But at the same time, there are some things I do know… 





    I’m a beast. 
    What REALLY matters is still there.
    I can still see. I can still think and learn.
    I can still smile.
     
    It’s happened now. I can’t change that. Even while I was getting the news… I was taking a step back, asking WHY of my doubts and fear and taking all those negative emotions away. I accepted what had happened, and was thinking about what I could do, what I should ask, instead of doing things that’d only make it worse; panicking and falling apart. I was focusing on what I could control instead of what I couldn’t. My future. 
     
    I’ve become adept at doing that.
     
    You may be thinking, ” You’re so brave, so courageous, so inspiring to have done that! “
     
    But really… and I’ve said this before… this attitude, it didn’t take bravery, courage, willpower or strength to put on!
     
    All it takes are a few simple steps – a few simple things that everyone does nearly every day too. All I do is apply them to not-so-everyday situations. 
     
    All I did was:
    1) Take a step back from my emotions and fear, and just analyse what I did… without emotions blocking my best judgement.
    2) All the fears, the anxiety, the panic I had, I questioned, until I saw that most of them weren’t really doing anything. The ones that were, I questioned again…
    3) Until I could see a better, more constructive way of looking at things and pursuing my future. I asked as many, correct questions as I could of the person that knew; my doctor, as I could to help get me there. 


    I talked about this more in that talk I showed above… But I mean you do this kinda thing everyday – every night before you sleep, you probably look over what you did, your interactions, some awkward situations and try to think what happened. You do it when looking in hindsight, and when you learn from mistakes. 

    You do it when you think about how to best approach a test, or a job interview, or a game. 



    Well, the latter you may not do now… You can do that to get better and achieve what you wanna achieve… but the others you definitely do. 

    I didn’t do anything special… I just made them work for me instead of against me.
    All I did was get MY mind on MY side. 


    A talk I did on this in the middle of this crisis

     



    And if there’s anything you can take away from this… yourself and to your friends/family (by sharing my experience!) – I hope you use this to get YOUR MIND ON YOUR SIDE too.

    Feel free contact me about this, or anything you may be going through – contact details on the side and here:
    email: [email protected]
    Facebook: www.facebook.com/musingsofamedstudentpatient


    Another update:

    So for a while they were suspecting the venous occlusion happened causing all this. But more recently, my ophthalmologists started believing it was my optic nerve that started the issue. It looked especially swollen when I went in to see them the Monday after (6 days after this) and we had to rule out any leukaemia relapse causing this…
     
    So I had 2 MRIs and, more recently, a lumbar puncture to rule out the worst. 
     
    And I’m happy to announce, that it’s at least not that causing this all! Which is AMAZING NEWS!!!
     
    Thanks to everyone who’s been supporting me through this – especially those amazing strangers, and those I’ve helped before, who sent very personalised words of encouragement and advice through all this! 
     
    To the amazing doctors and nurses – who not only got me through this medically, but managed to care for me through it all. All you guys, especially those who I bugged at midnight a few nights when it was really a crisis (and all of you messaged back giving me info and advice on what to do – EACH AND EVERY ONE!) – The biggest, most sincere THANKS for being the kind of people I talked about here – the kind of people 
    We All NEED to be.


     
    Thanks to my family too – THANKS – something I can never say enough
     


     
     

  • How We Prepare To Feed 10billion People. My Essay Response.

    Last post:                                     My Story:                                         Next One

    Preparing for an Impending Food Crisis.


    This was my entry into an international essay competition to pick delegates for the annual, amazingly inspiring Youth Agricultural Summit (find out more about it here). Results come out in March. Wish me Luck!!

    Well… I actually won this! And got to go to the International Youth Ag Summit – and we delivered our decleration to the UN Food Security Council in Rome 2015! It was awesome, and an update on what we did together can be found here:



    Essay question:


    In the next 40 years, it is projected that the world population will grow from 7 to
    about 9 billion, yet for many different reasons, 1 billion people today still
    do not have enough safe and nutritious food to eat. Demand is rising while resources
    are dwindling. Solutions are strongly debated across rural, urban and
    international communities.     Using your own village, town, city or country as your point of reference, tell us
    what you think are the underlying causes of food insecurity, and the effect it can have on a population, both at a local and global level.
    Based on this, explain what changes to agricultural or food chain practices, or personal and community behaviors could help solve these issues to create a more
    sustainable local and global society.


     

     

    My Response:
     
    842 million people, one eighth of the entire world
    population, are undernourished right now. Of those, 826 million live in the
    developing world    (FAO,2013)… It seems staggering that this exists
    despite the fact that we currently produce nearly enough food for the world’s
    7billion people    (FAO,2012; Lappe,1998). But it does. And as the global
    population climbs, and the environment changes further due to global warming,
    it becomes imperative that we prepare for what may be the greatest global
    famine in human history.

     

     
    But before we find
    solutions, we need to understand the problem. Like many of the world’s
    problems, the major driver of lack of food security is poverty.
     
    It seems intuitive; if you don’t have money, you
    can’t buy food. If you can’t even afford your own food, how can you, the small
    scale farmer who produces 70% of the world’s food(FAO,2012), feed your
    nation? Asia’s rapid decline in undernourishment rates by 41% from 2001-2012;
    in line with the socio-economic progress of many countries in the region, as
    opposed to Africa’s increase in hunger rates by over 25% (FAO 2001, FAO 2012,
    Lappe 2013); where conflicts and instability spurred an increase in poverty
    rates, in the same period, proves that poverty is proportional to reduced food
    security. Not being able to purchase ample, quality food leads to chronic malnourishment
    and stunting, condemning those affected to lower incomes, bad health and a life
    of poverty(WFP,2014). Poverty is directly correlated to higher fertility
    rates (Lappe et al,1998), which increases pressure on small, sustenance
    and commercial farmers to produce for their families, putting income-pressure
    on the family as well as adding pressure to rural systems and the nation as a
    whole. Small-scale farmers under constant stress to survive are doomed to not
    being able to save or otherwise secure capital to purchase more effective seed,
    fertilizer and equipment for farming; leaving them stuck in this aggressive
    cycle we know as the poverty trap. When combined with external stressors such
    as poor market stability, war and displacement, and arguably the most
    concerning of these; climate change and a rapidly increasing population, the
    outlook for the world’s poor and hungry seems bleak.
     
    The issue can’t be fixed through the dumping of
    food packages though. Food doesn’t appear out of thin air. What we need to do
    is increase its production.
    The UN knows this. It forecasts that the world
    needs to produce 60% more food by 2050; with developing countries needing to
    produce 77% more to keep up with caloric demand (APRC, 2013).  From intuition alone, it seems that more
    investment into smarter agriculture is key to getting on top of this problem.
    The data backs it up; investment in agriculture is five times more effective in
    reducing hunger than investment in any other sector (FA0,2012) and GDP
    growth in agriculture is twice as effective as reducing poverty than growth in
    other sectors (World Bank,2008) too.
     
    My nation, Australia, recognises this, and
    invests sizeable amounts in both agricultural research and deliverance of
    physical infrastructure that enables our major aid partners in Asia and the
    South Pacific to increase crop yields. Yet though we’re making valuable
    investments, that are providing undeniable results, we still only allocate 7%
    of our aid budget to this sector (DFAT,2014). We need to invest more, as
    well as improve some aspects of how we invest this aid. 
     
    Investment into agricultural research is a major
    focus of our agricultural foreign aid program. Agricultural research is
    responsible for the production of food for 60million people/year domestically
    and 400million people/year worldwide (D’Occhio,2011)
    and the ACIAR (Australian Centre for International Agricultural Research) heads
    our aid commitment to research with a very solid, effective framework.
    Collaboration with international research-agencies such as the CGIAR, inclusion
    and involvement of scientists from the developing nations we’re collaborating
    with, as well as a focus on designing solutions to mitigate the effects of
    climate change are key parts of our five-pronged strategy that impress strategy
    analysts (ACIAR,2011; Marslen,2014).
    The $448million invested into international agricultural research gave a
    $30.17billion return, a ratio of 67:1 with direct benefits totaling 15:1 (ACIAR,2013). These benefits are derived
    not only from the more effective agricultural aid programs that Australia
    initiates from it, but the sharing of knowledge and consultancy we provide to
    NGOs as well as private partners.  It’s
    also key to note that Australia, which shares similar challenges to the nations
    we’re helping, such as drought and water management, will receive spill off
    benefits from this research (Marslen,2014)
    marking it as an even more attractive investment. This staggering value for money, for us, and them, justifies this
    investment and makes a strong case for further investment into agriculture.
     
    But right now, Australia’s investment into this research,
    if anything, has been dwindling, following an international trend of declining research
    in the agricultural sector from 13% of all OECD investment in the Green
    Revolution, to 4% in 2008 (Harding et al, 2009, Alston et al, 2000).
     
    Though our research and aid program is effective,
    there are many ways we can improve its impact too.
     
    Furthering partnerships with private
    organisations, whose investments into agricultural research have increased 4
    fold in the last decade (ABS,2001, ABS,2012) and in particular,
    partnering biotechnical firms with ACIAR, will allow them the opportunity to
    capitalise on markets such as the five major crops of the developing world that
    the “Big 7” seed companies currently neglect; sorghum, millet,
    pigeon-pea, chickpea and groundnut (UN General Assembly Special
    Rapporteur,2008). Encouraging investment into development of superior seed of
    these crops, through focusing some public research into this sector, will help
    garner our companies a niche which is bound to pay off, both to our own
    nation’s economy, and those they’re helping, especially as the world population grows further,
    and food security becomes a bigger issue. Furthermore, encouraging these firms
    to then initiate programs similar to Monsanto’s Project Share, which gives free
    seed and training to small-scale farmers in India (Monsanto,2014), will
    result in the spreading of these superior seeds, access to new markets,
    reduction in micro and macro-hunger, as well as empowerment of small farmers.
    This is but one example of how further public-private collaboration on research
    projects can create growth for all parties.
     
    The arguments above makes a solid case for the
    need to increase and optimise research and programs that improve agricultural
    yield and supply chains, but the latter example highlights a need to get the
    benefits of this investment to those who need it most; small farmers. The most
    successful aid interventions derived from our research, the use of germ-plasm
    in Indonesian forestry, pig breeding in Vietnam, and integrated pest management
    in the Philippines; accounting for 55% all conceived benefits of Australia’s research
    programs (ACIAR,2013), have two things in common. They produce solutions
    that are have wide applications, and ones that can be integrated by small
    farmers. Focusing more research and aid programs that do that will result in
    more benefits being accrued for millions of starving people.
     
    There are many, innovative ways that we can get
    solutions and knowledge to the people who need them most. Delivering products
    that increase agricultural yield through a micro-franchise/social-enterprise,
    for-profit model, vastly increases the number of people on the ground who can
    benefit from research. EcoFuelAfrica is using such a model to deliver kilns
    that convert farm waste into energy, fertilizer, and extra income directly to
    small farmers, and is doing this for a profit, which is reinvested into growing
    it further (EFA,2015). This ensures this innovation spreads, as the
    model is scalable and the investment is seen as just that, an investment,
    rather than an expenditure. Establishing, or else investing and expanding
    similar programs through this model will further ensure our aid, and private
    philanthropic ventures go furthest.
     
    Increasing small farmers’ access to knowledge and
    markets is another factor that can be improved with innovation. Australia’s
    investment into developing  market
    infrastructure of Asian/Pacific developing nations (DFAT,2014) is wise,
    but utilising the region’s near 70% access to mobile-phone technology by 2017 (eMarketer, 2011) to spread  knowledge of market prices, weather patterns
    and farming techniques, and access to financial services is something our aid
    program can definitely facilitate. Indeed, partnering telecommunications and
    technology providers with biotechnical firms and government aid programs to
    deliver such messages can create further economic benefits and employment to
    us, those on the ground we’re helping, as well as companies worldwide too,
    furthering our impact and making it viable.
     
    Investment into agriculture and delivery to those
    who need it most is not only one of the most effective ways to secure
    international food security, but also world poverty and world-suck in general.
    Australia, though small, is already responsible for much of the world’s food
    security, but there are many innovative solutions and effective policies that
    can improve our impact, as well as that of others who want to make this world a
    better place. These are but some of those, and I’d be excited hear others and
    add mine to what I’m sure will be a gathering of great innovative minds at the
    2015 YouthAgSummit. 
     
     
    References:
    The State of Food and Agriculture, 2013“, United Nations Food and Agriculture
    Organisation, 2013 retreivable from:     http://www.fao.org/docrep/016/i2845e/i2845e00.pdf
    “The State of Food Insecurity in the
    World 2010″      United Nations
    Food and Agriculture Organization. 2010. retrievable from:     http://www.fao.org/docrep/013/i1683e/i1683e.pdf
    “The State of Food Insecurity in the World
    2012”     United Nations
    Food and Agriculture Organization. 2012. retrievable from:     http://www.fao.org/docrep/016/i3027e/i3027e00.htm
    “Reducing Poverty and Hunger, the Critical
    Role of Financing for Food, Agriculture, and Rural Development.”     Food and Agriculture Organization, International
    Fund for Agricultural Development, World Food Program. 2002  Retrievable from:     http://www.fao.org/docrep/003/Y6265e/y6265e00.htm
    Frances Moore Lappé, Jennifer Clapp, Molly
    Anderson, Robin Broad, Ellen Messer, Thomas Pogge and Timothy Wise, “How
    We Count Hunger Matters,”     Ethics & International Affairs, 2013
    Causes of Food Hunger Factsheet. World Food Program 2014
    Frances Moore Lappé, Joseph Collins and Peter
    Rosset, with Luis Esparza, “World Hunger: 12 Myths. 2nd
    Edition”    ,  (fully revised
    and updated), Grove/Atlantic and Food First Books, October 1998.
    Jenny Gustavsson,Christel Cederberg,Ulf Sonesson,
    Robert van Otterdijk, Alexandre Meybeck, “Global food losses and
    food waste”,     FOOD AND AGRICULTURE ORGANIZATION OF THE UNITED
    NATIONS, 2011
    “World Development Report 2008. Agriculture
    for development”,     World Bank,
    2008. Retrievable from:     http://siteresources.worldbank.org/INTWDR2008/Resources/WDR_00_book.pdf
    Australia’s new development policy and
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  • You won’t believe what my friends got me before chemo… Boys will be Boys. Humour in Hospital #7

     Last post:                                     My Story:                                         Next One

    Chemo was about to start. 

     
    At this stage I was ready. I’d taken a step back from the depression and shock of diagnosis. I’d questioned all my doubts and fears and was now focusing on being as healthy and as happy as possible. The only things I could control.
     

    I’d locked myself up in my room, told my friends and family to meet me after the first round was done. Chemo brings your immunity down to virtually zero. I couldn’t afford to even risk getting the sniffles at that point.My mind was ready for the ordeal. My attitude perfectly tuned towards getting through this thing, as those who’ve heard or read my story would know.

     
    But I still feeling alone… I still missed my friends. 
     
    It was my last year of high school…
    Even if I did get through this, who knows if I’d ever get to see them again? 
     
    And then one magical evening, on the night of the State of Origin (the Superbowl of Australia for those non-Aussie readers), just before the chemo was about to take effect, my school mates payed me a surprise visit. 
     
    It was the best surprise ever. 
     
    For someone who’s likely only gonna see the faces of doctors, nurses and family for the next 6 months to a year… this was the best gift possible. 
     
    For you guys reading this… I hope this highlights the power of just saying “Hi”. To someone who’s doing it tough, to the odd kid sitting alone at lunch, or to your parents who you haven’t called in a few months. Pick up that phone, or open up that tab and message them now.
    [email-subscribers namefield=”YES” desc=”” group=”Public”]
     
    Because seeing my friends there, getting to act as if nothing was happening… even for a few moments… that made me believe that I would get through this and see them again. 
    And that’s the best gift I’ve EVER been given. 
     
    But they also brought along another gift…
     
    Before the gang left the room after chilling for an hour, Isnad, a good friend, a good man; the boy on the right, turned to me and whispered,

    “Check out what’s in the bag.” 
     
    I opened it up. 
     
    Lo and behold…
     

    A Playboy Magazine.Classic Isnad.

     
    We burst into laughter. Typical High school boys. 
     
    But then I realised, “Shit! What if mum sees this??”
     
    And then Dad came to the ‘rescue’.
     
    “Here, son. I’ll hide it for you.”
     
    Needless to say… I never saw that magazine again…