Tag: cancer sucks

  • 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…
     
    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.
     
     
    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!”…
    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.

     

    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.
     
    Or as usual – email me or comment as anonymous if you’d like to remain that way.
  • 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).