December 5th, 2017
| Survivor: Acute Myeloid Leukemia
My life changed irreversibly six years ago when I was told "Nikhil, the good news is that you’re 17 and have leukaemia, but the bad news is you’re 17…and have leukaemia.”
When I asked this man I met just 2 seconds ago that one question that saturates every cancer patient in sweat and dread- “What are my chances?” - he sighed, took off his glasses, and said, "10 – 20% that you’ll live through the next 5 years."
However - somehow - I survived just that.
The driving force of this wasn’t just the benefacuntion of amazing doctors, treatments, friends and family, but also this state of mind I managed to embrace. After a while of suffering from fear, depression, and the frustration of “Why Me?” I got sick of it all. I tried to see some way around it… everyone around me was telling me I could do it.
But I was 17 and told I probably wouldn’t live to see 21.
I had chemo coming up in three days. It all seemed so bleak.
One day though, I decided to try this amazingly simple thing. I said to myself, “Let’s just take a step back from everything and look at what had happened to me as if it had happened to someone else.” From there, objective and equanimous, I reframed what had become my life – and could question the doubts and fears in my mind.
I couldn't control the proliferation of immature white blood cells in my blood nor the dysfunctioning of my bone marrow, but what I couget ld control – what would help me most in this situation – were my thoughts, my actions and ultimately, my choice to be happy, where I could. I realized then that you'll always have a second way of looking at things. No matter how bad things seem.
Chemo was about to start. And it was going to suck. But why was I, why does everyone, only look at it in that way, when wasn’t it also a medicine? The very thing that could get me out of this?
A 10% chance of survival sounded grim - but wasn't it just that? A chance?
My newfound mindset helped me recognise that my diagnosis at the age of 17 was in fact a blessing rather than a curse - I still had my entire family to support me and could recover from even the most intense of treatments faster than most.Maybe the bad news was that I was seventeen and I had leukaemia...but the good news was...I was SEVENTEEN when I had leukaemia.
This mindset-this simple process of taking a step back and questioning things -has helped me do so much more than beat cancer. It’s led to the creation of my blog, caused me to start talking about this so I could help others, helped me train to ride 200km for cancer research just 2 months after rounds of chemotherapy, and so much more. I think it can help with anything in life.
But last year, on top of the chronic pain from the nigh on incurable cramping that I face years after treatment, I was diagnosed with a lung condition - a condition that is probably going to take my life. That was devastating. On some days it’s really hard to see around that.
But I continue surviving, continue existing and continue to try and make a difference where I can. I’m currently studying medicine - something I always wanted to do, but something I felt I had to do after all this. Right now, I’m conducting research on cancer immunotherapies too - perhaps enjoying killing off cancer cells a little too much (in some form of poetic justice) every Friday.
But on some days, as my respiratory affliction periodically rears its ugly head, I find it hard to sleep at night with something as simple as a blanket on my chest. And when I can't sleep, I suffer. The cramps, already debilitating in both pain and frequency, now paralyse me. That’s me, hovering between 65% and 75% lung function. I have friends who are at 30%. I can’t even begin to imagine what they’re going through.
But recently I discovered this simple little thing that’s changed my life: a wedge pillow!
You see, placing my back on an incline allowed for gravity to assist my lungs, letting them expand further makes it much easier to get much needed rest.
Yet some nights, the slant is just not high enough. Some nights, even despite the pillow… I feel like I’m suffocating.
Globally, there are 70,000 people living with cystic fibrosis, 26 million with heart failure, a combined 718 million (at least!) with COPD and asthma combined. 42 million people in the US alone have obstructive sleep apnoea. Additionally, up to 1/4 people in the developed world, and up to 80% of expectant mothers, suffer from reflux, something an increased slant can also fix.
Plus, when reading up on these issues, I saw another problem, one that many cancer patients face, and often die from.
Unnecessary complications of hospital stays affect cancer patients disproportionately.
Our lowered immune systems and weakened bodies, combined with long times spent in hospital, leads to higher than normal levels of pneumonias, falls, deep vein clots and pressure sores. And each of these issues not only take thousands of lives, but cost tens of billions of dollars in health expenditure, each, too!
When I learned about these problems, I knew I had to do something.
That’s when I decided to create Get To Sleep Easy, a social enterprise which I'm hoping will change the lives of people who are in hospital or recovery every year. We’ve got provisional patents on our new, Convertible Hospital Bed Frame, which’ll reduce instances of those unnecessary complications. We’re also creating the first ever Adjustable Wedge Pillow, which’ll help those struggling to get to sleep (and those who wanna slouch in bed more comfortably), HUGELY. Plus - the pillows could serve as a much cheaper alternative for those $2-5000 hospital beds, possibly even in your home!
Check out our animation to learn how! And feel free to read about this in detail at GetToSleepEasy.org
If you want to get involved, let us know by using #GiveMeaWedgie on social media.
You can find out more about our social enterprise, Get To Sleep Easy, at our website , Facebook, Twitter and Instagram. Learn more about Nikhil's journey at his blog Musings of a Med Student Patient, on Facebook and on Twitter.
<ahref="https://www.sciencedirect.com/science/article/pii/S0735109714002915" target="_blank"> Science Direct
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