As it is Christmas today, I thought I’d share the best gift I’d ever gotten.
You see, in hospital, while getting my treatment (i.e. chemotherapy and radiation), I’d often wake up with intense pain or nausea, often finding myself drenched in sweat. And every time that happened, I got scared.
But the worst thing about that was that I’d wake up in the middle of night and not know whether I’d had 5 hours or 5 minutes of sleep… not know whether the doctors or blood collectors would be coming in soon, giving me ample time to sleep, or if they were hours away.
I couldn’t help but panic when that happened.
I used to always complain about this. But one day my uncle overheard me. And he thought up an ingenious solution for this problem.
He set out to get me a clock.
This is what he got me…
To this day, I can remember my jaw dropping as he unveiled this masterpiece. And never again did I feel that panic when I’d wake up at night. Instead I’d be left smiling at the most ridiculous gift I’d ever gotten.
The clock itself was a godsend. For the first time, I was lifted out of the confusion that is hospital, where I’d be stuck inside 4 walls, left to sit in a constantly chilled 24 degrees Celsius without any knowledge of what was going on in the outside world. I wouldn’t worry about whether or not I should bother to get back to sleep. I was, for the first time, in power in hospital.
But, to be honest, I think the best thing about this gift was the little thrill and that suppressed giggle I’d have every time a nurse burst into the room and said;
“My Nikhil! What a large CLOCK you have!”
Merry Christmas everyone.
Wish you and your families all the best for the next year, and hope this can help put a smile on you or your loved ones’ faces.
So you guys may have seen this in your news feed recently, and I thought I’d give my $0.02 on it as a tumor vaccine researcher.
It’s pretty exciting stuff, always, to see innovations occurring but this kind of thing is something we’ve known and been doing or decades. There are several ways in which tumor vaccines work. The difference between them and traditional, preventative vaccines are that tumor vaccines are usually THERAPEUTIC. They basically try and create specifically targeted immune cells that target your cancers through using proteins, or bits of DNA or even just killing off whole tumor cells and hoping the immune cells that are generated from cleaning out this ‘tumor infection’ we created are primed to kill your tumor cells.
Often what cancers do as they develop is create a microenvironment that’s immunosuppressive – which doesn’t allow immune cells, even if they do infiltrate the microenvironment, to create tumor-specific responses. They do this via creating areas which have immunosuppressive cytokines everywhere around a tumor, and also by producing proteins (called checkpoint proteins, eg PD-L1, which cancer cells start releasing after a while, binds to various T cells to stop them from activating and killing cancers) which inhibit immune cells from attacking cancer.
A great video that summarises how Checkpoint Inhibitors, an exciting new development in immunotherapy, work.
What the flu vaccine in this case does is create an environment that’s the opposite – that’s suddenly immunogenic, where inflammation is occurring, bystander tumor cell death may be occurring and at the very least, where we’ve got less immunosuppressive factors, and more activation of your immune system, occurring right next to cancer cells.
This picture shows a few of the pathways that tumors use to dampen immune responses against them. The flu vaccine, it appears, can mitigate or reduce a chunk of these!
This isn’t the first time that viruses have been used to increase the immunogenicity against tumors. Various viruses, from Herpes in brain cancer, to Newcastle disease, are used to boost the efficacy of a tumor vaccine, and some have, like Herpes in brain cancer, been used on their own to enhance tumor cell death.
Indeed, I’ve written up the most recent review on how to use viruses, and numerous other strategies, to increase the immunogenicity of tumor vaccines. It’s yet to be published, but will be soon – look out for that (sign up to my email list and I’ll ensure you get a copy when I’m able to release it)! It’s fascinating stuff that I chose to work on because it requires you diving DEEP into the mechanisms underlying immune evasion by cancers and immunotherapy in general.
But though it’s great we’re seeing results of the flu vaccine working on its own – its potential to be combined with tumor vaccines is amazing. Whole cell tumor vaccines, which is the type of tumor vaccine I studied (they essentially kill off a person’s tumor – with radiation, electricity or other means – and reinject it back into your body to awaken your immune system to targets that are now clearly visible to the immune system), could definitely benefit from this boost.
The great thing about these therapies is the fact that similar to regular vaccines, tumor vaccines are often really well tolerated. Other than discomfort and swelling at the cancer site, and sometimes a few more systemic symptoms, most human trials show decent results with minimal side effects. But though this is true, the efficacy of tumor vaccines on their own is often not that great compared to other therapies.
So though this isn’t a HUGE NEW DISCOVERY – it’s still an awesome one to have been made, and provides just another reason for people to get their flu shots, which, as I talk about in this video ARE SAFE AND EFFECTIVE!
So it’s been a while since I posted something here. A LONG while. Sorry to all of you!
So where have I been? What have I been up to? Well, I’ve been working hard. Promise. I’ve nearly finished my research degree – the one I decided to complete while I waited for my immune system to strengthen, so I could do medicine again. Hopefully I’ll get some publications and formally contribute to science and human development!
But I’ve also been busy on this startup. One I think could make a huge difference, and hopefully, save many lives.
So, what are we doing?
I started this up after losing a couple of friends to preventable illnesses and complications. Things like falls, pneumonias, and pressure sores are our most common causes of hospitalisation, they take tens of thousands of lives per year, and cost us billions as well. I looked into the problem. Talked to a lot of nursing homes, patients and carers. And I realised there was an opportunity to create something that made life easier, reduced work for nurses and healthcare staff, prevented these issues – all at an affordable price point!
That’s when I founded Get To Sleep Easy. How are we accomplishing this? Through our Smart Inclining Bed. This is a device which sits on top of your bed, and converts any bed into a hospital bed, for a tenth of the price of current beds! In addition to this, our smart sensors underneath can map user movement for a fraction of the price of current technologies. This allows us to, for the first time, let nursing homes, and people like you and me, who wanna keep our loved ones at home longer, be alerted of things like falls, pressure sore development – even if someone’s stopped breathing! Plus, we’ve got some other cool innovations in the pipeline too. Check it out! And be sure to sign up to our email list if you’re interested in becoming a test partner, or just interested in our development. Click here to sign up specifically for that – and click here to join my email list!
I’d love to share some awesome news… After a long month of campaigning, and losing a few friends from a bit of spam – we at Get To Sleep Easy won Australian Student Startup of the Year last week, at Startcon (the biggest startup conference on the scene)!
It’s a huge honour. If you did know about this, whether you voted or not… I’d just like to say thank you, from the bottom of my heart, for all your support.
So where are we? What comes next?
Well, in a completely separate competition… we may be getting flown out to become GLOBAL Student Startup of the Year (that’ll be amazing). We’ve got working prototypes which we hope to test with our amazing nursing home partners in 3 – 4 months time. For reference, we’ve got a device that converts any bed into a hospital bed for 1/10th of the price and smart sensors that detect and prevent falls, pressure sores – even if someone’s stopped breathing (let me know if you’d like to test these, or get one for loved ones!)! We’ve got opportunities to jump into some prestigious business accelerators which will turbocharge our progress, for sure.
And finally, in a few weeks, we’ll be doing some crowdfunding that’ll hopefully get us much needed cash, get our brand out there, and show, even more, to future investors how much these things are needed! I’ll email you on day 1 of launch if you sign up here (your support then would help us out in getting us seen through the Kickstarter algorithm – I’ll explain more in a few weeks). But if you want, you can help us get there faster by supporting our GoFundMe too!
The Mellow- the most ergonomic, scientifically designed pillow on the market! Check this and other products out at GetToSleepEasy.org or support us on GoFundMe!
Other updates!
But yeah. Hopefully this can go on to make an impact.
In other news, for those of you who follow along on Facebook or Instagram, you may have heard about my recent health troubles… A few weeks ago, I had another cancer scare, after also getting a few sezires. But I’m glad to report all seems to still be well! Here’s hoping there won’t be any other scares like this in the future!
My research – I’ve completed the degree/exam components! Now I’ve just gotta deliver my research project to graduate from that research degree! Hopefully, sometime over the next few years, I’ll be healthy enough to get back into the wards, but Get To Sleep Easy, if we keep going the way we’re going, will ensure I can keep making an impact, no matter what!
And I’m also writing a book too! Definitely check this out if you’re interested (I need people to act as editors, for sure!)
I’d love to hear more about how you are. Again, thank you so much for all the support you’ve given me. Let me know if there’s anything I can do to help you. And let me know what you think about Get To Sleep Easy too!
What’s with that chemo drug you were talking about on Facebook? I thought you said it wasn’t for cancer… and now you posted this?
Well, let me explain.
Recently I started a “chemotherapy” drug, but not for cancer.
It’s called rituximab – and it’s not only in brackets because it’s technically, in my case, not a chemotherapy, as it’s not “A chemical agent used in the treatment of cancers” (it was given for another condition I have – a side effect of my bone marrow transplant; chronic graft versus host disease. I’ll explain it in detail in a later post) but because it’s mechanism of action; the way it works is not in line with most chemotherapies.
Sure, it can have some of the nastier side effects of chemo – nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn’t kept on it), but many people tolerate it pretty well beyond that.
Me included, so I thought after the first infusion. My reaction to it was mild – only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days… the worst side effect came on.
The cramping.
Now I’ve had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They’ve were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here – don’t worry, I’m past that now) but since starting this medication… which is supposed to reduce them over time… they’ve gotten even worse.
The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn’t stop cramping the entire week.
But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night… that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath.
We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm… I’d just won a game of poker. So off to emergency we went.
Just another day in the office for the masked bandit…
Haha played 2 big tournaments in this mask to protect me from infections. It also gave me an extraordinary poker face.
Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan… A pulmonary embolism… a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT.
So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I’d received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.
“Well… we got your CT back… Though it’s clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma.”
For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play… and the cogs in my brain started whirring… chondro – something to do with cartilage… the tense look on the residents and medical students’ faces behind me meant something was up… sarcoma… a cancer… of the connective tissue.
Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge.
“How do they know it’s a chondrosarcoma?”
“Well… they don’t definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it.”
“Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?”
“Well probably not the former. Infections don’t look like that on scans. The latter… well… we’re still not sure. We’ll have to biopsy it to see.”
And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.
When I told a friend… he just said “You can’t catch a break, can you?” It certainly feels that way sometimes…
Still, it’s weird though. I didn’t have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren’t convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere.
And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying… given my history of acute myeloid leukaemia… that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could’ve been back, this time in my bones…
I went out and looked at all the evidence of this being the worst case scenario… my original leukaemia coming back. There wasn’t much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn’t had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML – the chances of it being that were tiny.
And luckily my haematologists agree. **Phew** In the off chance it is that though… I’ve still got heaps of options. Even if it’s the worst worst case scenario… I’ve got one of my own. Over the last few months I’ve been looking seriously into cancer vaccine immunotherapies – thinking of a way of applying them to a wide range of cancers. There aren’t many therapies that attack all cancers… my methodology may well do that – it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect – because unlike many personalised therapies, such as this one, this doesn’t require huge imput and study of patients’ own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease – AML – with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one – and adds more from others. Plus there’s another innovative component that’ll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me…
But the more likely, less sinister case – that it’s a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that – the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues… it may be a bit more confusing, it may take longer than most patients. But hey! I’ll pull through!
I guess you could call me unlucky… getting a really bad… agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn’t exactly something you’d celebrate.
But when you take a step back and think about it from another perspective; I’m extremely lucky. Because if I hadn’t been cautious, and come in when I started getting that shortness of breath, if I hadn’t had that CT scan… we may never have found this til it was big enough to cause me pain, at which point… it could have spread elsewhere. where it’s virtually untreatable.
You always have a second view of looking at things.
So why not choose the one that leaves you happiest?
Well… that’s good and all. But that doesn’t change the hard part… the treatment, though. I guess we don’t really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he’s happened to treat a few people I’ve met through this blog, as well as a good friend I know in real life – so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you’re sure it is something that at the very least will progress to cancer, he argues. I guess he’s the specialist here, and everyone else is, so I’m inclined to agree.
The surgery is on tomorrow. Or failing that Thursday. And it’s gonna be painful as hell, I’ve been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which’ll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back – places he’s planning to cut into. So that’s gonna be… uncomfortable (a word doctors use to say pain when they don’t want to say pain) to say the least…
There are some risks, my lung cavity could be pierced, there could be infections that come around with it.
But hey – I’m in great hands. And I’m choosing to see this, just as I have every other time, a minor inconvenience that’ll lead to me being healthier and happier in the long run. As I’ve said before here… and as I spoke about here… fear can be paralyzing…
Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they’ll keep me going over the next few weeks I’m sure! I’ll keep you all updated but don’t worry – in the meantime – I’ll still be busy. I’ll still keep working on those projects I’ve been hinting at. Cause hospital’s boring. This may well get me working more efficiently than ever on it (IF I’m not high on morphine all the time that is =P ).
Thanks again everyone – and please don’t worry. I’m in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too.
I wanted this to all be over. I wanted a way out of the hole that I’d found myself in. But with chemotherapy, uncertainty, and probable death in my future, there wasn’t much to really look forward to.
In the end, what ended up helping me most wasn’t this spark of inspiration or willpower or bravery after watching some inspiring talk or reading some book. The words of everyone around me felt hollow.
What did they know about what I was going through, after all? I was 17, and had just been told I probably wouldn’t live to see 22.
What really helped me was a simple thought process I did after just being sick of that angst.
I decided, “Why not take a step back and looked at what had happened to me, as if it had happened to someone else.”
From there I guess I saw everything that had happened to me objectively. So I could finally question everything that was going on and more importantly, how I was dealing with it.
And I did that through asking why. Why was I feeling that way?
There was no answer. In the end I realized I had what I had. Though it may suck, I couldn’t go back in time and change what had happened. I couldn’t take away my cancer.
So, what was my anger and frustration accomplishing? Nothing. Other than making me feel worse about everything.
Why was I feeling that way then? In the end, it was coming from me, my brain. Why was I doing that to myself?
I didn’t have an answer for that.
Photo credit: Analia Paino
But that question alone made me realize one thing that stays with me to this day. Because if all of that was coming from me, my brain, my mind… that meant I could take that away, too.
In the end, we will always have the final say on how we deal with things. At the very least, we’ll always have a second way of looking at things.
But we’re only human, right? And with months to years of chemo, pain, treatment — all of which is likely leading to me dying anyway — there wasn’t much to look forward to, right?
So I questioned those fears and doubts, too.
Again, one question got me through that — Why? Why was I thinking I was cursed for being diagnosed so young?
My doctor’s words as this happened rang through my head as I heard this. When I was diagnosed he told me, “The good news is, you’re 17 and you have leukemia, but the bad news is, you’re 17 and you have leukemia.”
Good news? “Good news? Really dude!” I remember thinking for a while after that.
But when I thought about it, being diagnosed young meant I could get the optimal treatment — I could recover faster. I didn’t have a job or a family or kids to worry about. Indeed, I had one right there beside me the whole way!
What I once thought was a curse turned out to be a blessing. But why was I so afraid?
I was looking at chemo as a thing that brings pain and misery. And it would. And that sucked.
But wasn’t it also a medicine? The very thing that could get me out of this? Indeed, my doctors wouldn’t be putting me through this if they didn’t think it could work.
Why was I so pissed off, afraid and depressed?
In the end, I was worrying about all these things I couldn’t control. And that worry and stress were only hurting me more.
From stepping back and looking at my situation objectively I could see the only logical thing to do was to focus on the things I could control.
My health.
My actions.
My happiness.
Because what this has taught me is you will always have a second (better way) of looking at things. Always.
It’s not easy to see that straight away. Definitely not if you’re overwhelmed and in the midst of it. Depression makes that harder, too.
But if you can take a step back, talk about it with someone, and just ask, “Why?”’ You can get yourself through just about anything and become the happiest, most successful version of yourself.
It doesn’t take courage. I wasn’t brave or inspiring in my “battle” (in truth, it was a beating) with cancer.
I cried, I wailed for it to be over. I still do sometimes. (Beating cancer isn’t always the end of pain for many survivors. Depression came, too. It’s something I face, and I write about it here as well as on my own blog). But I kept in mind these things — what it was all for — and by doing that I saw something good in the darkest days of my life.
You don’t need some superhuman willpower or positivity, either.
Because in the end, if you can take that step back, and ask why… if you can help your friends and family do the same… then it becomes only logical. It only makes sense to take the path that leaves you most well-off.
And I hope what I’ve said can help you do this.
Photo credit: Analia Paino. Sign up to my email list to get my latest blog as soon as it comes out!
One place where I think I’ve done this after cancer, against something which some of you may be feeling (whether you’ve had cancer or not), is with my social anxiety post-treatment.
You see, before cancer (not to brag or anything) I was quite a hunk (at least I thought I was). I wasn’t too fussy about how I looked but was a little, just as much as any awkward teen is. But I was fit. Very fit. I used to train for basketball almost every morning before class, and during breaks, and abide by a strict weight regimen.
But after treatment ravaged my body, I was left bloated out of my mind, unable to jump an inch, yet alone run. I’d lost a huge part of me. And it sucked.
Without even realizing it, I began using my health as an excuse not to go out. Whenever I did, the glances from people would bore into me, asking questions as to why I had such horrendous features, and when I tried to walk around the suburbs and try to run again, I’d feel ashamed when I’d puff out after less than a football field.
As I started my medical degree, I’d made friends but didn’t want to go out for fun or to events. I even stopped going out to see old friends at all, worried about what they were thinking. And that made life so much worse.
One day though, I sat down, took a step back and asked, “Why am I feeling this way?”
After a few days of thinking about it, I realized I was afraid. Not of chemo, or radiation or bone marrow transplants and other things that could kill me this time, but from other peoples’ thoughts about me.
It already seemed ludicrous to me at that point. But when I questioned it, I found no answer as to why I should care so much about other peoples opinions about me.
Because:
(a) Most people aren’t thinking anything bad of me at all. People have to look somewhere when they walked, and if they happened to look at me, most people wouldn’t think anything nefarious so much as to walk on. Many would smile. Most would smile back I’d say.
(b) Why was I caring so much? If they were judging me, they’d be pretty shallow, inconsiderate people who I really wouldn’t like to be friends with. Why do we all — whether we have scars or not — try so hard to impress people we don’t even like for that matter? Why not instead, focus on what we’d like to do. On the things that make us happy?
Now that was the first step. It wasn’t like I came up with this new philosophy and started becoming this happy #YOLO optimist in one day. I started small, by first starting to smile at people (most of the time, they did smile back) on my walks and jogs, then not shying away from asking people for directions at the university or hospital when I was lost or asking the workers at the groceries store instead of trying to find everything on my own.
I finally reached a point where I could walk around and not care.
Now I’m very open about my journey but can also do talks, in front of thousands or just a few, about how I deal with things.
Indeed, I’m the most confident version of myself.
Photo credit: Analia Paino
But most importantly, this helped me become the most happy version of myself.
And I hope this helps you feel happier about yourself, too.
Nikhil writes a blog about his journey, hoping to help out patients, inspire the medical profession (he’s studying medicine now) to educate people on worthy causes and to help others out in all kinds of circumstances (he truly believes this mentality can help with anything, from the mundane struggles we have in day-to-day life, to the epic journeys we take in life). He’s also doing many exciting things, including working in cancer immunotherapy research and a social enterprise that’s revolutionizing the hospital bed, to not just increase patient comfort, but to also hopefully reduce unnecessary cases of infections, fall, and pressure sores — to name a few — which literally kill hundreds of thousands per year, as well as potentially make millions of dollars a year! Most importantly though, he hopes he can help you, too.
This post was originally published on Scar Stories.
At this stage I was ready. I’d taken a step back from the depression and shock of diagnosis. I’d questioned all my doubts and fears and was now focusing on being as healthy and as happy as possible. The only things I could control.
I’d locked myself up in my room, told my friends and family to meet me after the first round was done. Chemo brings your immunity down to virtually zero. I couldn’t afford to even risk getting the sniffles at that point.My mind was ready for the ordeal. My attitude perfectly tuned towards getting through this thing, as those who’ve heard or read my story would know.
But I still feeling alone… I still missed my friends.
It was my last year of high school…
Even if I did get through this, who knows if I’d ever get to see them again?
And then one magical evening, on the night of the State of Origin (the Superbowl of Australia for those non-Aussie readers), just before the chemo was about to take effect, my school mates payed me a surprise visit.
It was the best surprise ever.
For someone who’s likely only gonna see the faces of doctors, nurses and family for the next 6 months to a year… this was the best gift possible.
For you guys reading this… I hope this highlights the power of just saying “Hi”. To someone who’s doing it tough, to the odd kid sitting alone at lunch, or to your parents who you haven’t called in a few months. Pick up that phone, or open up that tab and message them now.
Because seeing my friends there, getting to act as if nothing was happening… even for a few moments… that made me believe that I would get through this and see them again.
And that’s the best gift I’ve EVER been given.
But they also brought along another gift…
Before the gang left the room after chilling for an hour, Isnad, a good friend, a good man; the boy on the right, turned to me and whispered,
“Check out what’s in the bag.”
I opened it up.
Lo and behold…
A Playboy Magazine.Classic Isnad.
We burst into laughter. Typical High school boys.
But then I realised, “Shit! What if mum sees this??”
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.
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.
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.
“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.
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).
