Nikhil Autar

Category: Inspiration/Motivation/Help

My story, and what I’ve learned from it.

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

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     “How are you going these days Nikhil?” 



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

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

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

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

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

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


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

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

     

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



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


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

    I digress. Now… where were we? 

    Every single action.

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


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


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


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


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


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

     

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

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

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

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

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

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

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    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
     


     
     

  • The 200km Ride To Conquer Cancer… Conquered. It was the Best Weekend of my life!

    Last post:                                     My Story:                                         Next One

    As many of you know, I’ve been preparing for this bike ride. And I’m glad to announce… formally, well, on this blog, that only 2 months after I was done with chemo, I managed to complete the Sydney 200km Ride to Conquer Cancer!


    I was scared about it for months… But when I arrived at the start-line… just seeing so many people there who wanna beat this thing, hearing them encourage each-other on, and just immersing myself in the positive atmosphere took away all that fear.


    I was pumped. And the ride’s excellent logistics, the crowds cheering us on throughout the ride, the other riders urging eachother up the hill and the people who approached me, telling me my speech brought TEARS to their eyes; that they were riding for ME… that kept me going.


    And I made it =]


    It was honestly, the best weekend of my life. Being cheered on every few kilometers on the track… inspiring and being inspired by so many other riders all there for the same thing… getting to hear from and talk to and help others who have family, friends, or have suffered themselves from this horrible disease… What more could I want from a weekend. 


    Everyone felt the same way. Whether it be on the ride, where everyone somehow had a smile on their face, despite the pain their legs and behinds were going through… Or at camp, where we’d rest and cheer the other riders as they shared they stories… Or at the finish line, where everyone, not matter how much suffering they were going through, would stand up and cheer the last rider on.


    Everyone felt the same joy, the same feeling of accomplishment. 


    And it was because of riders like us that the Chris O’ Brien Lifehouse received $3.6million from the collected fundraising of 905 riders. 
    And I remembered how every time I’d hear about a fundraising event, or a new breakthrough coming through to fix cancer while in treatment… I’d get a smile on my face. Not only did we raise a huge amount that may just change the outcomes of millions of patients in the future, the fact that we were all there to show our support put a smile on EVERY cancer patient’s face.


    And That’s AMAZING. 

    This was my speech to start the event: 
     

    My training schedule and the ride itself:
    It wasn’t as hard as you’d think!

    The ride was daunting. The number, 200 (120miles) – terrifying to me before it. But with a few months of gradual build up – the day actually wasn’t too bad. 
     
    I mean the nutrition we were supplied with, and that I brought on the day itself (and my preparation), made the first 80kms of each day not too hard to keep pumping. Except for the hills… where everyone’s encouragment and the crowds along the ride kept you going!
     
    We did 100kms on the first day, camped out overnight, and did 112kms on the second. Everything was provided for – no worries there! And it cost only $50 to register. Honestly – just to have that experience itself would have set us back a few hundred bucks. It was very well run!
     
    What I ate the day before: I followed the pro’s, and general marathon advice. I had wholemeal pasta, with lean meats and a regular-spicy sauce (to taste) of course =P 
    During the ride, the regular pitt-stops, every 20 – 30kms at the start, and every 10kms towards the ends of both days, had Shotz tablets; the brand of electrolyte the pros on the Tour De France drink (at $4 a pop, with multiple bottles drank on each day – that itself helped us keep going). We had protein bars there too, as well as lunch on both days – a good, carb-rich, lean meat packed wrap or sandwich (with vegetarian options also catered for of course). 
    At camp, we had pasta with some very nice sauces too. And we had massages provided, as well as family and some amazing speeches to sooth our sore muscles too. It was great, and by the next morning, I was repumped to ride again! 
     
    The training up to this ride was also great – because I built up slowly. As I said in my video – I could only hit 5minutes on the EXERCISE bike when I started, I was that tired from all the chemo. But over the period of 4 months, I managed to get up to doing 50kms comfortably. And when I went out and rode – the adrenalin, the amazing atmosphere and the expert, well rationed nutrition – that took over. And I did it. As did many others who were nervous about it too – including a 70 year old lady I was talking to who had a partner, the same age, who had passed even dad and I! 
     
    And training for next year will be even better! Because I’ve managed to recruit mates to do it with me! And I invite you to join me – feel free to reach out and train with me – or get your own group of friends, colleagues or family and get out there and help conquer cancer too! 

    Sign up for the ride, wherever you’re from, today. If there isn’t one in your country/state – don’t worry. Because this thing is spreading faster than cancer ever could! So keep your eyes open! 
    Australia: http://www.conquercancer.org.au/index.html
    Canada: http://www.conquercancer.ca/index.html
    The US: http://www.cyclingacrossamerica.com/event/the-ride-to-conquer-cancer/
    Auckland: http://www.conquercancer.org.nz/

    The facebook page for the blog: www.facebook.com/musingsofamedstudentpatient

    My other recent talks:

    The Leukaemia Foundation Light The Night Talk I gave:

    My speech about My Story, and How what I learnt can help YOU guys achieve what you wanna achieve!

  • Stereotyping Cancer Survivors. I’m not brave, strong or blessed for beating cancer. It’s unfair to expect us to act like we’re brave blessed or strong for beating cancer.

    Last post:                                     My Story:                                         Next One





    Recently on Facebook, a few pages dedicated to cancer awareness asked patients to describe themselves and how they feel in one word. 

    Here’s an example. 
     

     

     
    I liked how positive people’s responses were. I like how these pages are getting groups of people in tough times together. I loved the word “Surthriver”.
     
    But there’s one that stands out to me. The one with no likes. 
     
    “.. Invisible.“
     
    People always tell me I’m brave for being so happy and positive through my journey. They admire how I’ve adapted, and grown, through my experience, and I give off that impression of a “surthriver” on my posts, I’m sure.
     
    But the ugly, not-too-well-known truth about cancer is it’s not something that you have for a while that either kills you or spits you out to keep going. 
     
    Cancer affects you long after its left your body… the physical fatigue, maintenance treatments and weariness is just the tip of the iceberg. The emotional drainage of facing your mortality, sometimes multiple times, the frustration of an all-too-slow recovery and the realisation that you may never be your old self again plagues many cancer patients long after their last treatment is over. Not to mention the medical bills…
    But surviving cancer is still hailed as a victory. Something to be celebrated.
    And cancer survivors, survivors of any tragedy for that matter, are hailed as heroes – symbols of strength – physical embodiments of those words badass, brave and blessed thrown about in that Facebook post above.
     
    It’s gotten to a point that survivors are expected to be act that way…. 
    Well, that expectation is UNFAIR.
    And it’s leading to many survivors hiding their true feelings, not talking about it and not getting help. 
    It’s leading to many feeling ashamed or weak when they don’t feel the same way.
    And it’s leading to people getting depressed when they realise that cancer affects you long after treatment stops…
     
    Telling someone, or expecting them to feel glad that they survived cancer is like telling war veterans with PTSD that they should be glad they’re alive…
     
    It’s not easy being grateful for the worst thing that’s ever happened to you…
     
    And the pressure we, as a society, put on these survivors to feel that way is not helping.
     
    How we’re expected to act and behave, despite how we feel
    SUCKS.
    And if you feel the same way .. or if you, or a loved one are wondering why you’re not in that constant state of euphoria everyone talks about for beating cancer, believe me – 
     
    YOU’RE NOT ALONE.
     
    I come off as happy, positive, cheery even in the fact of adversity. As someone who’s adapted well to this journey. Someone who’s won their battle. 
     
    I don’t feel like I’ve won…
     
    I hate that I got cancer. I hated having to suffer through it. 
     
    And to this day I still suffer because of it. I spend more
    time at the hospital getting treatment and waiting around for appointments than I do at university or hanging out with friends.
    I get aches, spasms and cramps every day for no apparent reason. I have skin
    peeling from my body, that itches incessantly and I can’t do anything about it. I get tired for no reason, I
    fall in and out of depressive moods week by week and I’ve had to go from not
    being able to walk for all the tiredness to being able to live a normal life 8 times now. 
    It’s been 3 LONG years…
    and I’m
    STILL not done with this! 
    I don’t feel
    like blessed… I don’t feel brave… I don’t feel proud…
    I don’t feel “glad to be alive”… not all the time.
    More than anything… I Feel Tired.
     
    And that’s me. Someone who’s managed to see, and maintain a better, more positive outlook about my treatment and where I’m at. 
     
    I’m not alone here either. In fact, I’m representing the majority of survivors here. This reflection by another cancer patient on the untrue, frustrating stereotype that cancer survivors are expected to encapsulate, went viral and had huge support. 56% of cancer patients seek some form of psychological or medical emotional assistance in their treatment. Remember – not everyone is open, or can get access to that help. I’m sure everyone with cancer needs it, at some point in their treatment. 
    Even those survivors, like me, who come off as mostly happy and positive don’t feel that way all the time.
     
    It seems absurd that I have to say this. But it’s perfectly normal to feel bad after cancer… 
     
    You don’t have to put up a facade, or berate yourself for the expectations of others. 
    And it’s okay to feel down and pissed off every now and then. Everyone does. 
     
    And you’re not weak to admit that you’re going through pain and suffering, physically and emotionally. In fact, it’s pretty brave to admit that you are. 
     
    But it shouldn’t have to be that way. You shouldn’t be ashamed that you’re finding things hard. 
     
    I’m writing this to let you know that you don’t have to be brave, badass or blessed to beat cancer. You don’t have to be those things to get through periods of depression or hardship or to accomplish anything in life for that matter… this part of my message applies to anyone.
     
    How would I describe myself in 1 word? 
    The way I’d handled all of this, how I’ve adapted and changed after cancer… I’d have to say that I was
     “smart.” 
     
    The words I took to heart most when I was diagnosed weren’t those cliched “You’re strong!” “You’re brave!” or “You’re a fighter!”…
    It was the words of my doctor – who unknowingly reminded me that there was something on my side in my battle. That the good news was I was 17 and had cancer.
    And also the the words of a nurse who told me, the day after being diagnosed that the next few weeks would be filled with pain, nausea, diarrhea, fevers and tears.
     
    I didn’t go into my battle kidding myself. I knew it would be a long haul.
     
    But I realised, when I took a step back and thought about it, that the fact that I knew and could acknowledge the pain that was coming meant that in the future, I wouldn’t give up when that pain got real. That I’d be prepared for it. That I would look at what would come after hardship rather than linger on it.
     
    Realising and accepting that I was human, that there were things I couldn’t control, that it would take time to get better didn’t bring me down into despair… In truth it left me only one way to go. Up.
     
    It was what allowed me to take a step back and look at where I was, without any delusions of grandeur or expectations of miracles. And that allowed me to see where I was and what I what I should do going forward with a startling clear logic.
     
    Accepting that there were hard times to come, acknowleding that I was scared and worried made me focus on how I could get past my issues. And taking a step back and realising that only I could make myself feel down (no-one comes into your head and programs emotions into you – only you can) made me see that I actually had a choice on how I viewed my life and my journey. From there… choosing to have an attitude and living life on the path that made me happiest and healthiest became the only smart thing to do…
    Looking in the big picture, and focusing on what I could control rather than what I couldn’t was what got me through this. NOT some inner strength or positivity or the blessing of others (though they were always appreciated). 
    That’s something ANYONE can do. It’s not as hard as you think.
    In fact – taking a step back and looking at where you are objectively, then acknowledging the hardships and doubts you have and planning your way around them will help you see a second, healthier and happier way of looking at life. And once you do that, choosing to view and live life on that path will be the easy, logical choice.
     
    For me, during treatment, I didn’t get bogged down by the pain that chemotherapy, radiation and all my other treatments would bring – I chose to see those things as what they really were – the things that would help me get better in the long run. 
     
    When I started feeling self conscious about my fitness and how I looked, I realised that I was only hurting myself to please others and chose to live my life how I wanted to live it – not by how others told me I should. And that’s made me the happiest, most self confident version of myself. 
     
    When I get frustrated about how long it’s taking to get back to normal, or at how I’m being held back by this cancer, I choose to see that I’ll get there, in time, and how that this whole experience has taught me so much about myself and what I can do, that I’d go beyond that old normal.
     
    These are things that ANYONE can do. 
    And you can apply these to any goals you have in life. This isn’t just gonna help cancer patients…
     
    You’re not WEAK if you think life is hard and painful sometimes. You’re definitely not ALONE. 
    In fact, You’re NORMAL.
     
    You don’t have to be strong to get through strife. Strength, motivation and the blessings of others help…
    But the best thing on your side in your battle is YOU. 
     
    And I hope this can help you get you on your side.
     
    For those who know others are going through hard times , whether they be cancer survivors or not I hope this lets you know that just because they seem to be coping with it well – doesn’t mean they are. That simple question, “Are you okay” saves lives. 
    Stopping that unfair expectation and breaking that stereotype of a survivor starts with YOU.
    This was a reaction to this post – one of the most awesome reactions to a post of mine ever.
    https://www.facebook.com/musingsofamedstudentpatient/photos/a.280281972124530.1073741827.276318712520856/328026504016743/?type=1&theater

     

    And this was a talk I gave on this issue not too long ago:

     


    Another place where this post was shared and the reactions, the almost coming out of other survivors after reading this is amazing. You’re not alone.

    “Survivors are too often expected to put on a happy face because the cancer is “finished”. But that expectation is…
    Posted by I Had Cancer on Friday, 23 October 2015

     
    As usual – if you ever wanna talk, about anything I’m here.
     
    Contact me on: Facebook – https://www.facebook.com/musingsofamedstudentpatient
    Or as usual – email me or comment as anonymous if you’d like to remain that way.

  • I No Longer BELIEVE I’m a Patient. Why You Shouldn’t Label Yourself.

    The other day, I was out to dinner and drinks with some friends. Amidst our casual banter about work, life and play we somehow got onto the topic of depression. It’s something that’s affected my friends, family and myself over my 3 years of being a patient.

    One of my friends said something that got to me.

    “Being told you’re depressed gives you an excuse to not try to get better. Maybe if people who say they’re depressed tried more, they wouldn’t be depressed.”

     

    He didn’t mean to be judgmental or mean about it, in fact, he was sincerely concerned for their welfare.
    But it was obvious that he didn’t know what depression does to you. That it saps away at your energy, your very ability to feel happiness, to the point where you don’t even want to get out of bed.

     

    Someone else brought up a relative who’d been through depression and agreed with him whole heartedly.
    I tried to tell him about how depression really affects you, and talked about how I got out of it (by taking a step back, questioning what I was doing and eventually, seeing another way of looking at things, and talking to people about it).  But he still maintained this idea that a majority of people use their depression as an excuse to not try – that it’s their fault they’re depressed.

     

    At first I was a little frustrated that he didn’t understand the plight of the millions who live with depression.
    But I try to never take thingsor criticism personally or dismiss them outright (I talk about that here). Instead I always use their criticism to try to improve myself and my ideas, and so after taking a step back and taking my own experiences and emotions out of the equation, I realised that he may have a good point.

    When we look at ourselves, we’ve programmed ourselves to look at the bad rather than the good.

    We label ourselves every day.

    And it doesn’t just apply to issues like depression either…

     

    We tell ourselves we’re not smart enough, not good enough, not cool enough to do what we wanna do. To get into our dream course, our dream job, to try out for the
    first grade team or to ask that girl you like out on  a date – we always use how we label ourselves as an excuse to not try.

    These labels are garnered by how we grew up, how we were raised and by what we believe other people think of us.
    But when we say that we’re either smart or dumb, or that we’re weak or strong or that we’re hot or not, it’s not always a bad thing.

     

    These labels can be useful.

    They allow people who are depressed or going through hard times to cut themselves some slack, and allow them to ACCEPT what’s happening to them.

    And a lot of people look at themselves, and use those labels, either self-imposed or not, to improve themselves.

    But it’s when we start to BELIEVE those labels, when we let them DEFINE us that they stop ourselves from trying to get better.

    There’s a term in psychology, that often is related to negative connotations. Victim playing. It’s often used to describe pathologies, and circumstances where people pretend to play the victim to garner sympathy, manipulate people, seek attention, and to rid themselves of blame for what they’re going through.

    If you’re someone who has gone through trauma, or depression, however, it’s only a natural reaction. You shouldn’t feel bad for feeling crappy about the worst thing that’s happened to you. It’s normal.

    But sustaining this feeling, and using our disabilities as an excuse, only leads to us harming ourselves in the long run.

     

    Half the time though, we don’t even know we’re labeling ourselves.

    After thinking about his words, I took a step back and had a look at what I was doing, about 10 months after my transplant.

    I thought about where I was at objectively, without any bias, and realised that despite not having any major treatments, despite not being hospitalised in a while, I still thought of myself as a patient.

    That wasn’t a terrible thing – acknowledging my vulnerability would make me cautious. I’d watch what I ate, ensure I’d take extra care in terms of hygiene, sanitation, that I’d stay away from sick people and all the other things I needed to do to stay healthy because I knew I wasn’t a patient.

     

    But I realised that at the same time I WAS USING IT AS AN EXCUSE to not
    get fit, not want to learn, to not eat healthily, to sit around and be a slob.

     

    It was stopping me from getting better!

    That dinner was 2 months ago.

     

    Since then, I’ve resolved to improve myself. Slowly, over time, I kept reaffirming and telling myself to not label myself, to not use my cancer as an excuse, in my head.
    I did it slowly, by first doing little things that I was telling myself I couldn’t, or shouldn’t be doing, and then building up until I could do them.

    And slowly, but surely, that became a habit… Your brain’s neuroplasticity and the power of affirmation and reinforcement, ensures that you can change your mindset on anything. Even if you feel like you can’t today (I’m a medical student, and researcher. Check out my book that I’m writing for the science behind this, and my own story!)

     

    And today I’m proud to say that I don’t believe that I’m a patient
    anymore.

    I don’t see myself as a depression sufferer either.

     

     

    I see the value of being cautious. It ensures I have motivation to stay
    healthy, it allows me some leeway to take breaks when I need them, it ensures that I won’t push my body too hard in my quest to regain my health. It ensures that I’ll always ask for help if I need it, when I’m down. I see the benefit of that label.

    But I’m not going to use my “being a patient” as an excuse to not push forward now. I’m no longer going to take a day off because I may have felt dizzy a few days ago, no longer not go on a run because my legs are too sore, no longer going to stop myself from going to classes because I shouldn’t be around too many people UNLESS I REALLY HAVE TO.

    I’m not going to lie to myself anymore.

     

     

    It wasn’t easy at first. But a change of place, a change of atmosphere, A CHANGE IN ATTITUDE really helped me get there. I started by going on a daily walk up and down a long hill, doing little bodyweight exercises like sit-ups and push-ups and helping out around the house. And I slowly built up from there.

    I knew that I wouldn’t see results straight away, that I’d feel tired at times, and lazy at others. But I’d push through those times. Eat well, at the right times to make sure that I didn’t even feel that lazy feeling.
    I knew that at times, I’d have to take breaks, especially when I’d be getting my treatments.

    But I reminded myself that I wouldn’t use my sickness as an excuse to not try.

    I’m glad to say it’s working.

    Because of my consistent work, because of my commitment to getting healthier and because of me not using my past as an excuse, I‘m happier, healthier and fitter than I have been since being diagnosed.
    I’m running around, I’m going to classes, I’m playing basketball and I’m looking and feeling better than ever, since finding out that I had cancer.

     

    I’ve been a patient now for nearly 3 years.

     

    Today, 1 year after my 2nd Bone Marrow Transplant I no longer think of myself as one. 

     

    And to those of you reading this – I hope this inspires you to stop using these labels as an excuse too.

    Have a look at yourself, and see what you label yourself as.
    If you find yourself telling yourself you’re too sad, stupid depressed or weak to do what you want, do exactly what I did.

    Take a step back, have a look at yourself and question why those labels DEFINE YOU. 

    And once you do that – take your time, take little baby steps and you’ll

    STOP YOURSELF

    FROM STOPPING YOU.

    If you think you’re not smart enough or accomplished enough to do something, ask yourself why?
    No-one was born with the ability to read, to do calculus, to do propose theorems. THEY MADE THEMSELVES PEOPLE WHO COULD.
    If you wanna get that job, get into that course, pass that paper –> try your hardest, work smart, not hard and you can get to where you wanna go. It won’t happen straight away, but if you work hard, ask the right people for help and work your way up like I did, you give yourself the best chance of doing it, don’t you?

    If you think you’re weak, or dependent, or just unable to change, take a step back, have a look at yourself and you’ll realise that just telling yourself that is stopping you from trying. Instead, take small steps to improve yourself. Give it time – weeks, maybe months, and you can change yourself to become the happiest, strongest version of yourself.

    If you think you’re depressed, and bound to stay that way, maybe, just maybe, you’re making yourself more likely to be that way too. When you next are in a good mood, when you’re feeling happy and able to do this; set up a system of talking to others, whether it be friends, family, a professional psychologist, and you’ll give yourself the best chance of getting better. You may have had some bad things happen to you in the past, you may have grown up to be that way, you may even have some chemical imbalances that predispose you to feeling that way –> But it’s only you – your perception of yourself which stops you from trying.

    Depression isn’t something you have to suffer from forever. It’s almost comforting to be depressed. It becomes your norm. Trying to fight it, to do things seems like way too much effort at the time, so many don’t try to get better.

    But in truth – it not only confines us to this box, to us feeling worse about everything… It also isn’t too hard to break out of either. The toughest thing about depression is that it makes us believe that we can’t do anything. But just like teaching yourself how to get past those labels, your brain can be rewired to release more dopamine and serotonin – our happiness neurotransmitters – as your norm. It’s actually easy to do. It just takes time, and a bit of planning. Accepting that it may not happen right away and that you will occasionally fall back into downward spirals every now and then, only allows you to get back up and continue on your trajectory of becoming a happier version of yourself, when you can. Again, this isn’t just conjecture. Neurobiology, and decades of psychological research guide what I say, and the advice I give (again, I’m writing about it – be sure to check out nikhilautar.com/mybooks for more info!).

     

    But yeah. Feel free to contact me if you need help with these issues. I’ve talked to hundreds of people, and not all patients as some of my posts may make you believe. (contact me via here anonymously, at [email protected] or via my FaceBook page)

    These labels keep you grounded, they keep you realistic and they can motivate you.

    But if you believe them, they only pull you down.

    If you give it time, you CAN become the best version of yourself.

    And as I said before, if you need any help in your journey, feel free to contact me.

     

  • Dealing with Loss, and Survivor’s Guilt

    Last post:                               My Story:                                      Next One:

     

     

    This Is Tragic.
    Bree and her friend Bridgette were
    diagnosed with leukemia, on the same day, at the same hospital. They underwent
    painful, grueling treatment together. They spent the hardest
    times of their young lives with each-other…
    And now that Bridgette’s died, Bree can’t imagine living without her…
    It speak volumes on our ability to love… And how love’s power can even outweigh our ingrained instinct to endure.
    It’s
    tragic…
    But this kind of loss happens every day. And not just to cancer patients like her and I.
    I felt a loss similar to hers not too long ago. The loss of my first patient.
    To be fair, I’m not a doctor, yet. After my experiences as a cancer patient though, my drive to wanna become a doctor – a dream of mine from childhood – only grew stronger. Hugely. But on occasion, I meet people, either through this blog, from a friend, or at hospital, who are going through hard times. Through my experiences, I try and help them by giving them encouragement, someone to talk to, and, in the case of other cancer patients, who, I guess, make up the majority of people I talk to, trying to inform them of what’s to come (all the
    while trying to get them to be happy, despite what could be a long, hard battle).
    Before my first bone transplant, I found that having the words of someone who’s been through the process more powerful than those of my doctors. They just stuck, there was just more power and credibility to the words that came out of a fellow patients’ mouth. And about midway through last year, I met a patient who was about to undergo a BMT. He’d been going strong for years after his lymphoma was in remission, but it had come back, and this was his last option.
    A nurse responsible for coordinating the transplant asked if I could tell him about the procedure. I started talking to him and giving him tips for the procedure. I comforted, consoled and encouraged him when he got scared.I even prayed with his crying family at one point… and continued doing that through the whole transplant procedure, where I could.
    I can still remember
    his eyes on the eve of his discharge from hospital.
    I’d told him of all the things he had to look out for after the transplant – the possible fevers, rashes, diarrhoea and fatigue, amongst other things. I gave him tips on the recovery process, and assured him that he could do it.
    I still remember the laughter of him and his family as I left his room.
    Despite his shaking, despite his pain, despite the suffering, his eyes were filled with hope for the future.
    Hope that he could, and almost would be normal again.
    That was
    the last time I saw him…
    He died a few weeks later.
    He wasn’t old – he was in his 20s, only a few years older than me.
    He’d only started living.
    HE HAD A SMALL CHILD GODDAMNIT! 
    When I found out, I was shocked. He was suffering, he wasn’t done with treatments yet. I knew that and he knew that too. But he’d seemed so positive, so sure he’d make it, and the doctors thought so too… but he didn’t.
    After that shock, I started asking myself unanswerable questions.
    What had he done to deserve
    this?
    What would happen to his baby?
    Why him and not me?
    I was feeling the same thing Bree had after Bridgette died… the pain of sheer and utter loss… the pain of losing someone so close to me.
    The next few weeks, I couldn’t bring myself to do anything. I didn’t wanna read, write, talk to people. All I did, day in and day out was browse pointlessly through the internet, not even registering what I was doing…
    It was only later on that I realised,
    that I was told, that I was going through depression.
    Frank’s death was a major cause of it, but the frustration of the ongoing treatment and the medications I was on, all contributed to my feeling down… out… and empty.
    I could see that something was wrong… I didn’t want it to stay that way. 
    But it was JUST SO
    HARD     to even break the pattern of doing nothing and not caring.
    Especially after the world
    seemed so meaningless, so unfair, after all this.
    After a while… when I could bring myself to do it I sat down and asked myself, what next?
    It was then that I remembered my own blog post about depression. I looked over that post again. And I took my own advice. 
    I talked
    to somebody about it.
    That somebody, for me, was Dad.
    I told him how I was feeling, and he listened. He didn’t know about Frank’s death, didn’t know about the loss I was going through. But he gave me another perspective of looking at things… and that would mean the world to me.
    Me, I was trying my best to help people. And that’s not a bad thing to want to do.
    But he made me see that I was overdoing it – I was giving up my own happiness, sleep and even food only months after my second transplant, a critical stage of my health.
    I was staying up late, talking people through their problems, writing too much too often and pushing myself harder than I should’ve been.
    He assured me that I would help more people in the long run through my being a doctor, if I first helped myself. I agreed. He also convinced me that I’d help others in the short term if I did that too. I couldn’t write or study medicine if I was stuck in hospital for the next few years, right?
    And that helped me see that I couldn’t hurt myself anymore over Frank’s death.
    A different perspective was all it
    took…
    But the question still
    remained. 

    How could I get over the loss?
    This time I loved back to how I used my mind to beat my cancer and again
    took my own advice.
    I asked myself why.
    Why was I was feeling that way…
    After a while of soul searching, I saw it was exactly what that poor girl was going through. Survivor’s Guilt. 
    The feeling of regret after you lose a loved one. It’s the same regret when you fail at something at life. Regret that you hadn’t done enough, hadn’t been there enough. It only adds to the melancholy that is loss. 
    But why was I punishing myself that way, instead of asking what Frank would have wanted for me?
    In the end… I knew that he would want
    me     to be happy. To do him proud.
    Why
    shouldn’t I do that instead?

    Why was I blaming myself for
    Frank’s death.
    I thought I’d given him hope.
    And then stolen it from him…
     
    That was what was eating me.
    On top of the loss of a good
    friend.
    But after a while of asking myself why again, I realised that I had told him of all the risks, of all the pain that comes during and after a bone marrow transplant. I told him he wasn’t done yet – that the recovery process takes years for some.
    All I’d done was give him advice for getting through the procedure and speeding up his rehabilitation. And someone to talk to. Someone to visit him, laugh with him – someone to give his brothers and wife a shoulder to lean on when they needed it.
    Yeah, he died young, and yeah the last few weeks were filled with struggle. But there was no way I could have stopped that. He’d been unlucky to even get the disease in the first place, yet alone get one the chemo and a transplant couldn’t fix.
    That reminded me of a quote
    from M.A.S.H. 
    “Rule
    number 1 of war     [or medicine, or life], young men die. 
    Rule
    number 2, doctors [, no-one] can’t change rule number 1    .”
    What I’d done was give him some happy moments in the last days of his life. I’d done all I could do. I had made a difference. 
    That guilt I was feeling was only harming me. Something Frank would never have wanted for me. And realising that allowed me to let that pain go…  

    But I didn’t want it to end that way.
    The loss of this still stuck. The feeling that this was all unfair was still there… But… sad as that was, I couldn’t change that… So… why was I only focusing on that?
    The best way I could honour his life, and let him live on, past his time, I realized, was to learn from my experience with him and help others get through what I went through. 
    That’s what this post is about.
    SO WHAT DID FRANK TEACH ME?
    ·
    He reminded me that no-one can live
    forever, that no-one always wins in life.
    ·
    That when we lose someone or
    something we care about, we will miss them.
    But once we get past our grief and failure, we have a choice on how we deal with it.
    ·
    That his personality. His spirit.  His impact on this world… Still lived on, beyond
    past his time, by how he’d changed those around him. By how his amazing family
    gathered around to help each-other. By how he could laugh in the face of much
    pain…
    ·
    That we can either dwell on the past
    and close ourselves off to others and to opportunities… 
    Or we can learn from them, from the
    mistakes we’ve made on our journey with someone or to something, and use that
    to     not only get over our loss, but also to improve
    ourselves.
    That way we can be more successful, influential and HAPPY human beings.
    Ones our loved ones would be proud of.
    It won’t happen in a day. We may have to do some soul searching to get there. When you lose someone close… it’s impossible to ‘just move on.’
    If we can’t see any other way of looking at it, talk to somebody about it. 


    I hope my experience with Frank can help you see your way around your losses.

    When you lose someone close to you – a friend, a family member, your mother, your father, your son – you will feel loss, and you will feel pain. 

     

    Frank was a close friend. He’ll always be a part of me. I can only imagine how hard it would be to lose a brother, partner or child to this disease…
     

    But after a while, YOU have the choice on how to remember them. So LEARN from those you’ve lost. Let their time on this Earth, let their qualities, their words, their philosophies, or their tragedy, inspire you to be a better person.



    They live through you if they’ve taught you how to live.
    They smile on as you smile and make them proud. 
     

    Always remember that.


    ****

     
     
     
    So What does that mean for me as a med student?
    I’ve learnt that I can’t save everyone… 
    I’m only human… people live and die, and no doctor or scientist, can change that.
    I’ve learnt that I need to take care of myself before I can help others. I need to make sure I get better first, that I don’t overstress myself (especially now, while I’m still
    recovering) and when I become a doctor, that I don’t blame myself for deaths or misfortune I could not prevent.
    But does that mean that I, like many doctors, close myself off to others and never get close to patients?
    NO.
    I’m not a person who can or wants to do that… And I’m not going to turn to alcohol, or other drugs, to get over the sadness my profession entails either. Alcohol abuse is surprisingly high
    amongst doctors, despite their better knowledge, for a reason…
    What I will do is remember this story, and remember what I’ve learnt from it.
    I will still care for others, I
    will still connect with my patients, I will ALWAYS try my best to help them in
    their times of need.
    But when I lose someone, when I miss out on a promotion or fail and exam, when I just feel down and out… I
    will talk to someone. 
    And I WILL
    move on. 
    A talk I gave, on this issue and on the horrible stereotype and expectation cancer patients are expected to live by (read about that here:) 

     
    If you or a loved one is facing loss or depression of any kind, you will move past it. It won’t
    happen straight away, it will take time. But talk to someone about it, and ask yourself what they would want for you – I guarantee it would be for you to keep being you. 
    I hope this helps some of you out there who may be struggling. 
    Or feel free to talk to me, here or on my blog (nikhilautar.com) or on Facebook – wherever. I will try my hardest to help you.
     
    Comment below anonymously if you’d like.
    And by the way, Frank
    isn’t actually my friend’s name. It’s just a name I made up to protect his, and
    his family’s, confidentiality.

  • 5 Reasons Why You Can’t Afford NOT To Give Blood, and Join the Bone Marrow Donor Registry.

    And Join the Bone Marrow Donor Registry

    Through my journey to recovery, I’ve said thanks countless times; to my doctors, my nurses, my parents and my bone marrow donors. But the other day, I realised that I must have had at least a hundred bags of blood pushed into my veins at some point in my treatment. That’s on top of the two very vital bone marrow transplants I had.

     
    It’s staggering the lengths our health system will go to in order to save a life.
     
    I guess only after getting sick and really needing those bags of blood did I understand the importance of blood donation. After volunteering at the blood bank, I realised how much goes into just maintaining proper stocks.
     
    Most blood products have to be collected on a regular basis, as they can’t be frozen. In fact, all of them can’t, except for plasma. And, as you’ll learn by the end of this… some common treatments require literally THOUSANDS of plasma donations per patient. 
     
    I’d been brought up with the idea, the common misconception, that giving blood is a painful, time consuming process. But in truth – it was anything but.
     
    I watched people walk in out within twenty minutes, smiling the whole time. Only 6 of which was actually spent giving blood. But despite all the great work that thousands of Australians, and those in other countries of course, do every day in donating blood – there is still a critical shortage. In fact Australia, as a country, still has to import blood to keep up with demand. 


    Only 1/30 people donate. These guys often donate regularly and are the reason we don’t have to import huge amounts of blood. People don’t give because they’re afraid of the procedure, because they don’t think it’s needed, or because they don’t care.     
     
    But what if it I told you that the only pain involved was the initial needle prick… pain no more than a blood test? That it only took 6 minutes. That there is indeed shortages in giving blood, and in the bone marrow donor registry, particularly in the minorities, and during winter when regular donors get sick. And what if I told you that there are pretty awesome benefits of giving blood too – you get paid, you reducing your risk of major diseases like cancer and heart attacks and you even lose quite a bit of weight losing weight. So you’re not only saving 3 lives every time you donate… you’re helping yourself too.


    Well – all of these are true. And I hope these ideas will make you see that you can’t afford NOT to give blood.

    1) It’s needed – and demand for it is always increasing.
    2) It’s an easy, almost painless procedure.
    3) It’s a free health check-up every 3 months and there are HUGE health benefits to boot!
    4) There are financial benefits and free stuff that you could
    be missing out on!

    5) It’s a great way to lose weight and you get a guilt free meal each time you do it!

    Here’s a video I made outlining the benefits of giving blood – and why you can’t afford NOT to do it!

     
    1) The necessity is
    ever present and ever increasing.
     
    Everyone’s heard this stat. 1/3 people will need blood in their lifetime. But only 1/30 donate regularly. As an Australian, as citizens of a developed country, we will never have a shortage of blood as we are rich enough to buy blood in times of shortages. Health systems suffer and people literally die when they don’t get access to the blood they need and to boot… that money doesn’t come from nowhere. We pay for it. Through our taxes. 
     
    Blood donations have to be constant. As I said before, you can’t freeze whole blood or platelets. And during cold and flu season in particular, regular donors are often sick and can’t donate – so it’s needed even more then!
    So make sure you donate. The procedure takes, in most cases, 5-15 minutes. And almost all of the pain you feel comes in the first few seconds. They’re often less painful than even a blood test, because staff there do this every day, and because they have access to ultrasounds and other tech which makes the process less painful, and extremely accurate.  
    And the increase in the amount of bone marrow transplant procedures done, as doctors realise it is a viable method for treating a variety of autoimmune conditions, such as diabetes, scleroderma and even AIDS, as well as blood cancers like mine, means that demand for bone marrow donors is higher than ever before. But the registry, where your ’tissue type,’ (your immune profile – which has to match, or nearly match, a patients’ own profile to be able to do a stem cell transplant) still remains sparse.  This means many people will not get a second chance at life like I had. In Australia, you need to donate blood to join the registry. And you need to actively ask them in the pre-donation interview to join it! So do that! In many countries, you only need a swab of the cheek!  
    But did you know, despite the scary name, over 95% of people who get called up to donate marrow (a 1/400 chance of that even happening) never actually have their marrow invaded at all? They need your STEM cells, which they can collect peripherally, from veins in your arms. I’ll explain how the stem cell donation process works more in the next section.

    http://www.ncbi.nlm.nih.gov/pubmed/19140820
     
    Sadly, some cultures in particular lag behind others when it comes to joining a stem cell donor registry, and giving blood. People of Indian, Asian, Black or Middle-Eastern descent in particular have much lower rates of participation on this front. This pie chart above, based on the American Bone Marrow Donor Registry, demonstrates this shortage for Asian and African-Americans in particular. 


    A lot of this is due to cultural beliefs that blood is related to male virility, but a much larger part of this is due to lack of awareness, or being afraid of the actual procedure. Well, hopefully, the next point will change your mind about that.
     
    2) It’s easier than you think and involves little risk to the giver.
     
    Many people relate the process of giving blood to intense pain and a lot of sacrifice on behalf of the donor. While it is a very noble thing to do, it’s not nearly as scary as it seems…
     
    Did you know, whole blood donations are done in 6 – 10
    minutes?
    Did you know that the only pain involved is the initial jab
    from the needle, not from the blood leaving the arm?
    And did you know that a vast majority (over 95%!) have absolutely no side effects from giving blood?
     
    I won’t kid you, the needle is larger than most. But the fact that you’re required to drink a litre of water before donating, and the fact that you’ve got the best phlebotomists (the fancy word for blood takers) working on you means your chances of having severe pain from a blood donation are very small. In fact, in his greater than 20 years experience in donating blood, my father has only had one “two-arm-specials,” where they had to jab him twice. IN OVER 200 DONATIONS! I’ve had a MUCH higher rate of blood takers missing veins in my 12-13 years of treatment, that’s for sure…
    That alone is a true testament to the skill these guys have. As a doctor, I wish I had this kind of skill. 
     
     
    Here’s a picture to put it in perspective. The one they use in blood samples is the blue or purple one standing up. The one they use in taking blood donations is the light blue or black one lying down. Yeah, it’s a little bigger, but when you know that the pain only lasts an instant, not throughout the whole donation, it doesn’t make much of a difference.

    Relaxing during a blood donation. Over 200 (300 now since I wrote this) done by this man – my father – alone. 
    Joining the bone marrow donor registry doesn’t involve extra
    pain. In fact – they NEVER need a sample of your bone marrow to join!

    To join the registry in Australia, historically, you’d have to donate blood and be under the age of 45, so that if a match is found, you don’t get the unfortunate situation of a person refusing to donate their stem cells due to fear of the procedure. 
    Even then, joining the registry only involves the taking of an extra 20mL of blood, which they use to figure out your “tissue type,” which is used to match the recipient to a donor. You may as well, while you’re donating blood anyways, right?
    When you consider you’re giving 475mL of blood at the time anyways, that isn’t too much. Make sure to ASK to join the blood donor registry, as they may not bring it up with you otherwise, and someone will hand you a form to do just that.
     
    In America though – it’s even simpler. It only involves buying a $5 kit and sending in a sample of your DNA taken from a cheek swab to join. Right now – in Australia – you can do the swab method too!
     
    Once you’re on the list – you’re on there forever. 
    And
    there’s only a 1/400 chance of being a match for someone in your lifetime.
     
    And the procedure of donating marrow is nowhere near as painful as it sounds! In 95% of cases, it’s actually STEM CELLS that you donate. The process takes 3 hours and basically involves taking blood from one arm, siphoning off the stem cells they need, and pumping it back into your other arm. They may give you medications a few days to weeks before to ensure your stem cells exit your marrow, and circulate in your blood.
    But even if they need to take it from your marrow, you’re under general anaesthetic, so it’s nowhere near as painful as it sounds. In fact, that 5% of people who do give via that means, often do so because they’d prefer to not feel anything and take a while to recover than choosing the other option. 

     

     
    For more info on how to join the registry, click here:
     
    http://www.abmdr.org.au/
    America/International:
    http://www.giftoflife.org
    http://www.bmdw.org/index.php?id=become_donor
    3) It’s healthy for you! You get a free health check-up. And it may reduce your risk of heart disease, cancer and diabetes too!
     
    Every time you give blood, they need to assess whether your blood is healthy. So giving blood every 3 months is essentially a free, quick health check-up, at least for your blood counts (though I wouldn’t recommend not getting physicals/check-ups done just because you’ve given blood). It’s a great way to catch diseases early.
     
    Indeed, in my case, I would’ve known I had myelodysplasia syndrome (MDS) a long time before it developed into its deadly form, acute myeloid leukemia (AML). And MDS is much easier to treat than AML, which I found out the hard way.
     
    I’m not saying that you’re at risk of getting such diseases if you don’t give blood, but you will definitely pick up on any abnormalities you may have earlier, making any conditions you may develop much more easily treatable if you do.


    But early detection isn’t the only benefit. Giving blood regularly has been shown to reduce the risk of heart attacks in men, as well as the ability to slow insulin resistance which leads to diabetes.  A study of nearly 3000 men in Finland showed those who did give blood regularly had an 88% lower risk of heart attack than those who didn’t! That’s HUGE! Donating blood has been known to reduce the buildup of toxic elements in your blood, including iron, making it not only a free detox, but a good way to reduce your risk of cancer!

    4) You’re missing out on a lot of benefits – including time off, and money.
     
    While talking to a few donators at the marrow centre, I realised that a lot of them were there not only to give others a second chance at life, but also to help themselves fiscally.
     
    A lot of the donors were actually school kids. I wondered why. Apparently, they came as often as they could over the year in order to miss a few periods of class.
    But it’s not just school kids who benefit. A good chunk of people donating were actually being paid to do so, or given a half day, or day off by their employers. There are many schemes and benefits out there where you can donate blood and actually be paid for the time it’s taken out of your day by your employer. And I’m sure sitting in a chair for 10 minutes is much more preferable to slugging it out at work! Depending on where you live, there may be tax benefits eligible for donating.
    Indeed, in some countries, including the US, they even pay you for donating blood!
     
    Here’s a link to a video of how you can do this in America:

    The ethics and implications of a system which compensates everyone for donating is interesting. But if you can cash in AND save lives, there’s nothing wrong with doing both!



    5) You lose weight donating blood!
     
    When you donate blood, your body needs to replace what was lost. In fact, it takes at least 650 calories to replace a pint donation ofblood. That’s the equivalent of going on a 5mile run!
    Feel a split second of pain in your arm and sit on a chair for under 10 minutes or run 4-5 miles? You decide.

    I know which one I’d choose…

     

     
    Not only that – but after giving blood, you’re given a chance to go crazy over a veritable buffet. At the centre where I volunteer (Liverpool) there are sausage rolls, pies, soups, milkshakes, coffees, toast and more – and it’s served by chirpy, good looking volunteers (well, at least when I’m on duty).
    When I’m feeling too lazy to cook one day, or needed a break while stressing over exams,  this would be where I’d be going to get a free meal. Indeed, the fact that you know your body will have to work to make up for what you’ve lost will mean you can have a guilt free meal. Be warned though – too much donating can result in a figure like this:

    Dad going to TOWN on some freebies. Remember – this is only the COLD food they provide. Add to this sausage rolls, pies and milkshakes, and that’s what’s on offer every time you donate! Some centers have other meals on offer too, including lasagna, pies, and even give out additional meal vouchers for restaurants.

     
     
    So – now that you’re convinced that you’ve got to go out and give blood – remember these things:
     
    Before giving blood, make sure you have a meal and drink a litre of water within 3 hours of donating. It’s a requirement and you don’t wanna be turned back on the day!
    Try and include high iron foods and things like orange juice (which increases iron absorption) to ensure your iron and haemoglobin levels are sufficient. A tip from the nurses there – spinach and orange juice in the meal before you donate increases iron levels into the healthy range for those who find themselves turned back for being too low. My mum had low haemoglobin levels, and was turned back many times when trying to donate. But after eating that spinach with orange juice (she’s a vegetarian, so red meat wasn’t an option) religiously for a few weeks, she managed to donate blood for the first time during COVID-19 lockdowns – when it was needed most!
    Make sure you haven’t travelled to areas with infectious diseases in the past 3 months and make sure that you can prove any recent tattoos you’ve had were done in sterile situations.
     
    After you’re done giving blood – make sure you drink a glass of water before eating or drinking anything hot, just in case, as it reduces the already small chance of vaso-vagal syncope.
     
    To find and make an appointment to give blood at your local blood donation centre, click here:
    https://www.donateblood.com.au/ready-to-donate/make-appointment?sourceId=SEM12&utm_source=google&utm_medium=cpc&utm_campaign=redcrossSEM&gclid=CNmopreE9boCFUMzpAodMikAzA
    http://www.donateblood.com.au/ready-to-donate/donor-centre
    http://www.fiods.org/main/IFBDO
      [email-subscribers namefield=”YES” desc=”” group=”Public”]
    How can you help if you can’t donate blood?
     
    Unfortunately, a small chunk of women, and some men, can’t donate blood as their iron levels are not high enough. And there are other reasons why people can’t donate too.
     
    But if you can’t give blood and join the bone marrow donor registry, you can still spread the word and encourage others to do so! Whether you mention it next time you catch up with friends or just post it on your Facebook wall – these things all count and if it helps 1 extra person get into donating blood, well, you’ve already saved 3 lives!
     
    If you are donating – make sure you “check in” on social media each time you give blood. Letting people know what you’re doing is not boasting (even though it’s definitely something you should be proud of) when it gets others to donate too!

    You can also volunteer at the Red Cross like I do, either by helping out and giving snacks to the donors, or by driving a car or van that picks up donors. It looks great on your CV and you’re just as vital a cog in the great machine as the donors themselves. Click here for more info.


    Participating or donating to people in the World’s Greatest Shave or events like the Leukaemia Foundation’s “Light the Night Walks” also helps in a similar way.

    Here’s a speech I gave at the most recent Light the Night event about how I stayed happy during my treatment, and how the Foundation helped me during my treatment:

     
     
    Other things you can do include donating to the Red Cross or
    to the Leukemia Foundation, which can be done through the links below. These organisations are trying to find a cure and save people from having to go through this pain in the
    first place! 

     

    And make sure you share this with others and on your Facebook Walls so as many people as possible join up and so more lives can be saved.

    Another way you can donate – PLASMA! And why it’s so necessary!
    The name of a treatment I used to get – Intragam. Not Instagram. #INTRAGAM.
    This was a blood product I used to get once a month to help with the chronic inflammatory disease process and nerve damage my#bonemarrowtransplant gave me. Though it wasn’t fun, coming in every month to be plugged into an IV pump for over 2 years, it likely did delay further damage and was one of many blood products which have kept me here.Every 200mL bottle takes 7.5 ENTIRE Plasma donations to create, if we’re strictly speaking numbers of immunoglobulins, aka antibodies, specifically IgGs (antibodies essentially confer immunity to people who can’t produce antibodies on their own, and mitigate some autoimmune disease processes by triggering suppressive pathways of your immune system) per mL, dosage wise. I used to get around 750mL of this stuff. Every month.But each of these bottles contains a mix of 1000 individuals’ IgGs. It took a literal village to keep me going for a time there! And plasma, like blood, is not only easy to donate – it can be done every 2 weeks, and, as you can clearly see, is really needed.More info on that process, on how easy it is to donate blood, how it actually is healthy to do so (each plasma donation burns 450 calories – whole blood, 600!), and how joining the list to donate bone marrow (and even donating bone marrow itself) doesn’t require, at any point, a needle in your bones at nikhilautar.com/donateblood
    #redcross #vampirecup #blooddonation #intragam#notinstagram #everydonationcounts #doit!#spoonies #spoonie #chronicillness #chronicpain#nervedamage #peripheralneuropathy



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  • Nurses. True Angels in our Wards.

    Last post:                                      My Story:                                         Next One:

    You see it all the time on those medical shows on TV. 
    You see a doctor, who could probably earn millions modelling
    on the side, running through hallways and corridors, hanging IV drips, getting patients
    food, finding time to sit down and talk patients through all their fears and
    concerns – basically doing anything and everything to help the patients through
    all of their troubles. 
    I guess that’s what I’d expected would happen when I was told I had cancer.
    My first week in hospital, however, would turn out to be a shock to my system. Even on the
    day I was diagnosed, I saw my doctors for no more than thirty minutes. 30
    minutes! And that would turn out to be the longest single session I’d see a doctor in
    a day, outside of emergencies… well… ever. 
    In the end, it was the nurses who did the REAL work.
    I’d been brought up, maybe through the media, maybe through cultural
    perceptions – probably through ignorance – thinking that a nurse was just an
    over-hyped house-maid. 
    As it turned out, it was a nurse who placed my first canula
    in emergency. A nurse who took my bloods every morning. A nurse who’d be in
    charge of injecting chemotherapy through my central line – a long plastic tube
    that pumps medicines from the veins in your neck to your heart. Hell, it was a nurse who
    put that in too!  
    If it wasn’t for their badges and uniforms, I wouldn’t have known the difference between them and the doctors. 
    In fact, I would’ve thought that they were the doctors. 
    Because the thing I found most astounding was that despite all their work on top of these vital responsibilites, despite taking care of, at times, half a ward-full of critical patients… despite their unreasonable shifts and rosters, they still managed to find the time to do all those I thought doctors would be doing.
    Yeah, it was a doctor first gave me the bad news. Yeah, he was the one who prescribed all my medications. Yeah, he was the one whose knowledge and experience I could trust.
    But it was a nurse who sat down and hugged me with my parents that day after I’d been told I had leukemia. A nurse who told me that my journey would be hard, but reminded me that I could survive nonetheless. A nurse who would sit down and just chat when I just couldn’t find it in me to sleep for the pain and worry. 
    And no matter how many cards we gave them in thanks, no matter how many chocolates or donuts we brought in – the true testament to their generous, giving souls, was the fact that they ALWAYS shared them with all the staff on duty. 
    Personally, for me, they’ve always been the balm that eased the sore of treatment. The girls and guys who’d go beyond their strict professional duty and hold my hand in emergencies, keep me calm during procedures and just keep me cheerful through their words and their, at times, crazy antics.
    And if it wasn’t for them, I wouldn’t be the man I am today.
    I remember the day I came back in for my second round of chemotherapy. My heart was racing, pulse rising from my usual 60 beats per minute to well over double that, and it stayed that way for most of the day. 
    I was back in that damn place, stuck in the tiny confines of that room for what would end up being fifty-six consecutive, bed-ridden days. And the crazy thing was, I didn’t even realise I was in trouble. I hadn’t felt apprehensive or anxious about all this… I’d unconsciously bottled it all up. 
    But then, as I walked around the corridors and glimpsed the door of my last room, I saw this. 
    They’d known that I was a fishing tragic and that that was exactly what I’d be doing in my 2 week break. No matter how tiring, risky and stupid.
    And, just realising that the next few weeks of pain and torture would be eased by these people, these amazing souls who made their job a profession dropped my heart rate back down to normal. 
    They’re angels, all of them. The humblest, most devoted, most under-appreciated, yet most vital aspect of hospital life. And in my eyes, they’re the lynchpin of our medical system.
    So I hope after reading this, that next time a nurse tells you that you’ll have to wait another half-hour in emergency, you’ll understand it’s probably because there’s somebody who’s going through haemolytic shock due to
    blood loss just behind that ED door. Next time a nurse insists that you leave a friend or family members bedside, after initially getting upset, you’ll see that it’s because if they didn’t, other patients’ rest may be in jeopardy. Next
    time you’re about to berate a nurse for getting the bloods done a little late that morning, it’s probably because they had six other patients to medicate before they’d even gotten the chance to pull bloods out of a line.
    And I hope that you’ll forgive them. If not for their compassion, dedication or graciousness, for the fact that you’d expect the same of them if you were the one on that bed.
    Don’t worry – I know there are many roles in healthcare that
    do just as amazing work – social workers, dieticians and the hospitality to give a few examples. I’ll be doing them justice in later posts, don’t worry about that. 
    As for doctors, I do believe they have to up their game in helping the people they care for beyond just their physical condition. Read more about that here
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  • My Story.

    If you’d like the full version, check out my book (it’s here for free!).

    “The good news is you’re 17 and you have leukemia, but the bad news is… you’re 17. And you have leukemia.”

     

    I’d sorta known it was coming. It had been months since I’d felt right. I’d come home from school and sleep until eight. I was off my food. I’d been getting weaker and weaker, losing my strength and speed week by week despite training almost 2 hours a day. I’d put it down to exams and stress. But damn… it was far from that.

     

    Now what? All my – and my parents’ – last hopes had extinguished with  the final test; a bone marrow biopsy. It hurts just as bad as it sounds… they stick a needle through your hip and suck out what’s inside. In my case, as a healthy, strong, near-adult, it took 3 doctors and lots of sweat just to pierce the bone.

     

    We hoped it was anything else but that until that. 
    My critically low blood counts? Maybe I had some vitamin deficiencies? My hour long nosebleeds? It must’ve been the dry air being expelled from the heaters. Sleeping 16 hours a day? Maybe I was just a slob, or tired from all that studying.

    In the end though… that was all denial.

    Questions racedthrough my  mind…

     

    What had I done to deserve this?
    What had caused it?

    WHY ME?? 



    I hadn’t done anything bad to anyone as far as I’d known… I was fit, hard working and I ate healthy. 

    FOR GOD’S SAKE… I WAS ONLY SEVENTEEN! 

     Wasn’t cancer for old people? Or those
    who smoked of something??

     

    Then I asked that final, scary question… 

     

    “What are my chances…”

     

    This man I’d met just yesterday glanced at his peers and looked me dead in  the eyes.

    About 10-20% that you’ll survive the next 5 years. 

     

    I cried. For ages. No matter how much my parents, nurses and close  friends would try and console me – I wouldn’t listen. How could I? I  was 17 and told I probably wouldn’t live to see 21.

     

    What would you do?

     

    I did those things that people don’t  know you’d have to do before chemotherapy. A heart scan. Lung function test. And lots of blood tests, to get a baseline. Chemotherapy apparently affects all those things. A sperm donation. Apparently it can affect that too. 

     

    Amidst all this was the constant messages from everyone – from my  parents, relatives and close friends, to nurses – people who’d only known me for an eight hour shift, max. All told me that it’d all be fine. That I’d be strong and I’d get through it. One nurse even had the nerve to say that the next few weeks for me would be filled with pain, vomiting, diarrhea and all kinds of awfulness. How dare she, when I was at my lowest?? How could she be so cruel?! 
    I kept questioning their words.

    How could they know what I was going through? How could they take away the fact that I only had a tiny chance of surviving?

    But in the end, I had a choice. Even if I didn’t know it at the time. And I realised that choice, when I decided to do one simple, yet extraordinarily thing. 
    I took a step back, and looked at what had happened to me, as if it had happened to someone else. 
    When I did that, those negative emotions dropped away. From that objective perspective, I was finally able to question  what I was doing, and ask myself, what should I be doing instead. 
    When I asked WHY I was feeling this way… I realised that I had the cancer now. No matter how much I wanted to, I couldn’t go back in time, and change that. So what was all that misery I was going through doing for me? What was it accomplishing?
    Nothing. Other than making me feel WORSE about everything.
    Why was I doing that to myself?
    Because in the end, I realised that all those emotions – they were coming from me. MY brain, MY mind. And because it was… that meant that I could control how I responded.

     

    It’s by questioning all my doubts and fears, it’s through this attitude that I learned – there’s always a second way to look at things. 

    When you take a step back, and question what you’re doing, you’ll be able to see the path that leads to you being happiest and healthiest, in life.

    And from there… taking that path isn’t the brave, strong or courageous thing to do going forwards…

    It becomes the only logical thing to do.

    This mindset is what helped me find a way to deal with the cancer.

    And if it could help me see something to smile about, days after being told I’d probably be dead in the next few years… It can help you accomplish whatever you want in life too.

     
    I was afraid of the chemo, and treatment to come. But why just look it that way?
    When wasn’t it also a medicine? The very thing that could get me out of this? 
    I was feeling cursed for getting cancer young.
    But wasn’t it also a blessing?
    Instead of having to worry about a family, a mortgage, a job… I had my entire WORLD behind me! Amazing parents… loyal friends. 
    I was fit, I ate healthy, and I could eat a LOT – so I  could take the hardest treatments, and wouldn’t waste away as some do, during chemo.
    So maybe the bad news was that I was seventeen and had leukemia. 
    But… the good news was, I was SEVENTEEN and had leukemi
    And why was I feeling doomed about my chances? 
    When it was just that? A chance.
    My doctors, they wouldn’t be doing any of this to me, if they didn’t think it could work, right? 

    That 10 – 20% was beginning
    to look much bigger in my eyes.

    I started reading a book given to me by my mother. It was about a doctor who’d happened to develop bowel cancer. He witnessed the grief the other patients endured during their treatment, but in particular, he was struck by how they acted like it was a death sentence. He asked himself one simple question… 

    WHY?

    Why did they feel down about something they couldn’t control? Why were they acting as if they  were definitely going to die? Why did they see the treatment as  only something that brings misery when wasn’t it also a medicine? The very thing that could get him through this? 

    Why was he thinking like them?
    By asking why, over and over again, he saw another way of looking at things…. And that made all his doubts, all the obstacles in his path seem like nothing.
    And that cemented it. NowI could see that I was young, fit and hence more likely to survive. I was beginning to view the upcoming chemotherapies and bone marrow transplants as what it really was – A CHANCE OF A CURE, rather than just something that brought me pain and suffering. And from that nurse who’d told me of the horrible things I would encounter, I knew it would be hard. But not kidding myself, gave me a choice on how I viewed things. Yes, it was scary, knowing what would come. But acknowledging the pain and misery I’d feel, allowed me to prepare. I reminded myself what this was for, I’d have something to hold onto, when things got tough.
    And I wouldn’t have to force myself to be Strong, or Brave when I was at my lowest. Through this, I knew I’d have the greatest chance of not falling in a heap, and giving up, when things got tough…
    With that attitude, I KNEW I was going to get better.
    And I’m still here. Twelve years, 22 rounds of chemotherapies, a near fatal dose of radiation, two bone marrow transplants, going blind in my left eye, almost going blind in my right 6x after, getting open heart surgery, 2nd and 3rd cancers, multiple trips to the ICU, a life threatening chronic illness, a condition that shuts my muscles down randomly, depression, anxiety, and so much more, later.
    This mindset, like any mindset, solidifies itself, it becomes easier to do – it’s become my automatic way of dealing with things. It’s a process – that’s helped me not only deal with these tragedies (and more), but also face any problem. It’s the reason why I’m still here. 

    You may be thinking, that’s awesome man. Good on you.

    But I could never do that. 

    You may be thinking… that’s pretty cool… but how does that affect me? 

    I want you to ask yourself 1 question.


    WHY?


    Why wait for cancer, like I did, to live a happier, healthier life?
    Those little steps I did, I still apply, to every challenge I face in life.
    And not just health challenges. It’s helped me motivate myself – get into medical school, and become a doctor, despite numerous health and other challenges. It’s helped me find cures and fixes for my own conditions (I’m publishing one in particular, in a medical journal). It’s helped me create, patent, and raise money for social enterprises. The first, Knia Maps, which is the Google Maps for Accessibility; crowdsourcing in depth information to make the world a more accessible place. The second, Bheem Health. We’re creating a world first sensor mat which tracks movement over an entire bed affordably – bringing pressure sore, fall, vitals and emergency monitoring to not just critical care, ICU or high care scenarios, but to the home as well. I’ve helped develop and expand the world’s largest coalition of doctors dedicated to combating domestic violence. And so much more, too.
    This mindset is I’m happy and always looking at the better, more constructive way of looking at things, whenever I can.

    So, what had cancer taught me?

    And how could this help you?

    Obviously, my whole battle has changed my view of the world and how to handle adversity. And you may be thinking that you simply couldn’t do those things if you were in my situation, or that you’re not “strong enough,” to apply it into your life.
    But the major ideas, the things I did to get over cancer are simple ones – THINGS YOU ALREADY DO – which can help you almost accomplish anything you want in life. 
    You can’t get everything you want, you can’t cheat death. But they will help your chances along a damn sight. And remember – you will ALWAYS have a choice on how you view your life. 
    Sometimes it’s just hard to see that. Sometimes it’s hard to walk that path.
    But it probably can.
    And there’s no reason you should wait to make a change that could change your life for the better.
    A talk I did about my story… that outlines how this can help you guys too! 

    So Remember:

    • There is ALWAYS a second way to look at things.
    • If you take a step back, and keep asking “Why?” of all your doubts and fears, you won’t need to be brave, or strong… It won’t take willpower or creativity to see a better way of looking at things… And alternate path you can take, that leaves you happiest and healthiest.
    • Acknowledge that the journey to anything will be hard. But let yourself be human, and PLAN ahead to overcome these hurdles. It’ll give you the best chance of getting through them. Instead of being scared, you’ll try to forsee and overcome the challenges you’ll face. If there’s nothing you can do… it won’t make sense to make your suffering worse. Let future you deal with that! And when they do emerge, because you’ll have given thought to how you’ll overcome them, because you have a way of finding a second way of looking at them… You’ll be MORE LIKELY TO GET PAST THEM.

    It wasn’t just the chemo, my age, and my odds that got me scared. I had SO many other qualms, worries, and challenges too.

    But the beauty of this ‘mindset,’ is that it’s a Process.

    Instead of needing to tell myself what to do, or to tell myself (or have someone tell me) to be STRONG or BRAVE – this process allowed me to FIND a better way of looking at things MYSELF! By taking a step back, and breaking my doubts and fears down into bite sized, accomplishable pieces – I could do it Anytime, for Any challenge I faced.

    I was afraid. The studies, the treatments I’d have to go through did ultimately have low odds. But in the end, I also had the best of modern medicine – doctors at the forefront of their fields, who worked together – as all doctors do! A world class medical system, that wouldn’t bankrupt me, as an Australian! I was in the best place I could be. Why stress more, why give myself more stress, and fixate on things I couldn’t control (which would release stress hormones that would affect my physical health), when the best thing I could do, was the job of any patient lucky enough to not have other responsibilities. Take it easy, and get better!

    I knew I’d have to limit visitors when my immunity was low. I knew it was gonna be boring, and lonely as I went through chemo. But I had facebook, phones and technology to still be able to connect to people. I knew I’d need help – so I built an army of school mates, family, and strangers who could keep me busy. I got into reading, and started re-reading books that’d take ages to read. Harry Potter. The Magician Series by Raymond E. Feist. I started playing Runescape – an online MMORPG Game with NO END, again. And games like Age of Empires, and Pokemon, that could take DAYS to complete. Technology wasn’t perfect. But it would help me out! 

    If you ever need help getting there, post a comment down below or message me on my Facebook Page (I get messages from patients and regular people all the time asking for help or advice – and I’m glad to help.

     

    So you’re full of energy, you’re pumped up, you know you can do it. But don’t make that mistake of getting overconfident and wasting your opportunities because of that, and don’t allow your resolve to waver when you find
    yourself facing an obstacle. 
    Life will be hard at times. But only if you make it so. 
    I knew that the treatment was going to be tough. Excruciating. Exhausting.
    For others peoples’ goals, challenges may present themselves
    as distractions – things like too much gaming or social media or even partying too much. I should know, I spent almost a month wasting time before beginning to write this. But after a while of wasting time, ask yourself why? Why am I
    having fun scrolling down facebook aimlessly when my real interest is the beauty I can make from taking and editing photos of nature? Why shouldn’t I enjoy studying maths when I can feel that satisfaction from finding out why I
    was going wrong and next time getting those questions right? 
    If you’re trying to lose weight or be healthier, you can
    look at it from another perspective. Instead of enjoying downing a box of Krispy Kremes, think instead about the pain you’d get the next day from the stomach ache. If you don’t like running aimlessly, why do it? Try playing a sport you like, like basketball for me, or do other things – like playing laser tag or paintball or even just walking with a friend or a pet for a half hour per day.
    The biggest challenge you’ll have to acknowlege is your own
    laziness, or lack of motivation. You know that on some days you may be lazy, but remember your goal and all those things you have on your side to help you achieve it. When you don’t feel like doing anything, ask yourself why? Soon enough you’ll be back on target.
    Step 3 – Research and Plan
    Before you even begin to lift a weight or do a question or
    write a word in a book, you should have an idea of what your actions will do for your goal and why. Going in blindly or overconfidently into anything will reduce your chances of success. But if you do your reading, and know where you’re going, you’ll get there a lot quicker. 
    For me, in my battle against cancer, it was easy. I had
    doctors who were doing that for me, and they could answer any other questions I had on my treatment and things like hygiene and what to eat. 
    But in truth, it’s just as easy for anyone.
    Don’t be afraid to ask someone about something. If you don’t
    understand how a teacher did a problem, why should you feel stupid for asking her to explain it to you again? The second, and better way to look at it, is to ask yourself how much more stupid you would feel when you got the test back and failed because you couldn’t solve a similar problem? If you don’t know the best exercise regime for you, ask a personal trainer. They’re big, but they don’t bite.
    And if they don’t know the answer, you’re blessed to live in
    today’s society – where information or advice can be harnessed from the tap of a few keys and the clicks of you mouse. 
    Step 4 –> Do
    For me, I just had to sit back, eat as much as possible and maintain slightly higher levels of hygiene. I already knew I was going to make it – as will you – and I got to relax all day most of the time. 
    For your goals, it may be a bit harder, but at the same
    time, just as simple. 
    When you’re preparing for that final game of basketball, and
    all your research on the other team’s players and strategies are done, all you’ve got to do is get your body and your team ready to execute moves, shots and plays. So you shoot your shots. You lift those weights. You run those sprints. You dribble through cones and cones. If you’re in the gym, worried about looking weak compared to the older kids or bodybuilders, or slow against the sprinters on the track, don’t change your technique to lift more, or worse yet, give up altogether. Why feel that everyone thinks you’re weak, or horrible at what you’re doing when, if you look at it another way, you’ll end up in front of them in time by doing it the right way, consistently? You’d only look stupid if you hurt yourself by doing it unsafely. Why harm yourself to look
    good for others?Read about how Nikhil overcame his fear of judgement and became the most confident version of himself here!
     
    And when it finally comes time to that last game, you’ll
    know that you’ve done your practice, you’ve got your teammates, your skills.
    You’ll acknowledge it won’t be easy and that the other team may be good. But you’ll remember you’ve got everything on your side. And that you won’t doubt yourself on the court because of that. And that you’ve given yourself the best
    chance of winning.
     
    Life is all about giving yourself the best chance to be
    happy. And I hope what I’ve written will help you do that. 

    A talk I gave on this topic…

    I really encourage you guys to share this one amongst your friends/family in particular –> especially with those who are in really tough circumstances. Hopefully it’ll help them find a way past their sadness and get back to being their best.


    https://www.facebook.com/musingsofamedstudentpatient <– If you or a loved one needs help, message me here. Same deal if you enjoy my blogs, or if you’re interested in medicinish related stuff (don’t worry, I don’t get too technical and I always keep my blogs user friendly).