Chemo Starts Tomorrow. And I'm Looking Forward To It.

I'm not crazy. But after suffering for a year, I finally have faith in something again. You'll always have something on your side in life. Always. Sometimes it takes a bit of time and help to find that...
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Last year was hell.

Not only was I going through 2^nd year, the hardest year of med school, I developed a lung condition that will only deteriorate in time.My skin grew darker, my muscles wasted away and my cramps got worse and worse.

The last of those, the cramps, was what was really killing me.

Not just physically, when they came on, but mentally too.

The thing is, no-one really knows what�s causing my cramps. It seems to happen a lot more than doctors suspect in patients with my disease (Graft Versus Host Disease, where my donor�s blood stem cells creates white cells that don�t recognise, and hence attack me)� but as my doctor at the time bleakly put it, �because cramps are such a non-specific, subjective symptom, and because there are so many things that can cause it, it will never be studied. No cure will ever be found.�

And I believed that. I thought I�d be doomed to suffer silently as my mind screamed out at my body and the torment my wrecked self was giving me. The cramps never let up. And they only got worse over time� It started with them happening every other day at night, then it started coming on some mornings, and soon after, I�d be left cramping, unable to move from my chair in fear of an attack, Every. Single. Evening. They started off 2 years ago only in my calves and abs, and now, every muscle is affected. Even my jaw. I often find myself stopping a conversation because my mouth was gaping and spasming of its own accord...

Last week marked 3 weeks of constant cramping. Ones that would start in the morning (indeed, I�d often be woken up with a cramp), ones that left my muscles aching with every tiny action, sometimes on their own, ones that would never let up. Bringing my arm up to brush would make my biceps burn... typing anything would make my hands curl up like a spider, even going to the bathroom became a dreadful task.

The pain had trapped me. Consumed me in all ways. I was constantly in fear of it coming on. I�d become despondent when thinking about my future. I�d thought, �Why bother living at all� so many times� I�d come to believe my own doctor�s words, that I would suffer this forever.

And I hated that... I hated me. 

A glimpse of me trying to move with the cramps. 

It�s not like I wasn�t fighting� The last few months in particular, I tried everything. I suggested treatment after treatment to my doctor, but every time, I was turned back. I tried to be positive, told myself to live in the now and not worry about the cramps, to just relax and watch a movie when they did come on� But when they did, I�d curl up and cry, literally and figuratively, and those dark thoughts would come racing back.

But now, I'm sick of it all.

So last week I decided to take a dose of my own medicine, and I did what I did when I was diagnosed with this.

I took a step back.

I questioned all my doubts and fears.

And I looked for a way out of this hell. A way that would leave me happy and healthy.

I�d tried to do it before, and I�d kept telling myself that all this would subside in time, and to live in the moment �tl then�

But that wasn�t sustainable. I didn�t have something I had last time... I didn�t have hope, belief, or a purpose.

I now know that if I�d talked to someone before, I�d probably have come to this conclusion much sooner, and made this journey to a better way much easier. A lesson for everyone I guess - you don�t have to do everything on your own.

So what�s the actual change? And how did I get there?

I decided to do what I did when I relapsed, and was told Ihad a less than 10% chance of surviving.

I looked up anything and everything I could in the literature about my cramps.

I searched and I searched. I stayed up til 5 in the morning days in a row. I was possessed with a fervour I�d lost. A want for something that I hadn�t had in a while. Getting better.

I ended up learning a lot about muscles and nerves and the fuel that they need to work. Things that can go wrong in cramps. And I found many treatments for them. And just as importantly, I found a doctor that was willing to help. A guy who encouraged using our arsenal of weapons against disease. A guy who looked at me as a whole, who wanted to hear about and treat even niggling concerns in my life.

Here�s a document I made with all of that if you�re goingthrough the same thing. It's a bit technical, make sure you ask your doctor about things - but I'm happy to talk about them too. 

And tomorrow, I start a therapy that may well cure my cramps. I�m a bit scared; it�s a chemo drug that has all the side effects you�d expect chemo to have. But this is something that has proof behind it � this is something whose workings and mechanisms I get, and can get my mind to believe in. And I finally believe I�m gonna get better again. If not with this drug � then the next, or the one after.

I guess you need that in life. Losing it made me realise just how empty it can get without it. And I also know now that no matter what, you can always give yourself that meaning or purpose.

It may take a while to get it sometimes, but if you�re struggling, know that you can still get there. Sometimes a little help is necessary. If someone around me had asked � �what happened to the old you?� I would have written this post months ago.

But know this, whoever�s reading - you�ll always have that someone in me.

Wish me well, cause I don�t need luck - Nikhil

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A Lesson I've Learnt From Cancer And How It Can Help You.

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"Nikhil, the good news is, you're 17 and you have leukemia, but the bad news is, you're 17 and you have leukemia.. ."

After being told I had this deadly form of cancer - I asked that one question all patients dread...

"What are my chances?"

A man I'd met less than 12 hours pulled off his classes and sighed. 

"10 - 20% you'd live beyond 5 years..."

I cried. For ages. For ages. Everyone was telling me not to - that I had a chance, that I could do it. 

But how did they know what I was going through??

I kept asking myself - why me? What had I done to deserve all this? I hadn't wronged anyone.I was healthy and fit. I trained hard. I was doing well at school too...

I was only 17 for god sakes! Wasn't cancer for old people? Or those who smoked or were exposed to some form of radiation for too long???

I wouldn't listen to anyone's words. I was stuck in a dark hole - depressed. I spent days clinging to the same pillow in the same clothes, sheets and blankets - crying.

But you can't cry forever... 
After a few days... I began to hate that feeling. That utterly bleak, black hole I'd dug myself into. The wet pillows form all the crying.

The idea that I was worthless now - a dead body just waiting to be burned and removed from the world.

I took a step back from all of that. I stopped asking those unanswerable questions. And I looked at what had happened to me as if I was someone else.

All those gloomy emotions pushed aside, I realised that I had the cancer now. And that no matter how much I wanted to, I couldn't go back and change it.

And I realised that, in the end, it was me - MY brain, MY mind that was making me feel down! 

And I realised that I HAD A CHOICE.

I could either stay feeling that way - depressed in that hole or I could look at my new situation in another way. 

I had what I had now, I couldn't change it. 

So the best thing I could do for myself from that point onwards would be to be happy and positive no matter how bad it seemed. 
I could do my best to stay healthy, by working hard between chemotherapies to stay fit and eat up, so I wouldn't waste away from all the treatment. 

I realised that by doing this I could get my mind and my body on my side. And yes - your mind is a powerful thing. It's why things like the placebo effect - where people take sugar pills in medical trials but still feel better because they think they're being given the curitive medicine - exist! And by being healthy, eating up and staying fit - I'd be able to withstand the effects of chemotherapy and be less likely to get any infections during that time.

I read a book given to me by my mother by a doctor who had also been diagnosed with a cancer. He spent a few nights like I had - down and depressed. But after a while - he had a look around at the others in his room and in his ward and asked himself one question - WHY?

Why were they all acting like they were goners when there was a decent chance they could still survive? Why were they being sad about something they couldn't control? Sure, some of them were in pain at the time, but for the others - weren't they just harming themselves when they could be, if not happy, at least content with their lives and their struggles?

And he looked at himself for a moment and realised that he was doing the same.

AND HE ASKED HIMSELF - WHY SHOULD I THINK LIKE THEM?

By simply asking "why" every time he had his doubts - he realised that there was another way of looking at all of this. He resolved to look at his treatment as the CURE for cancer. After all, theoretically, chemotherapy works by killing fast growing cells - and cancer is by definition an abnormal cell that grows uncontrollably fast. By doing this, he put his mind on his side. And he is still alive today to tell that story.

 I looked at his example and decided to try to do the same thing. I took a step back, analysed my situation, and asked myself why I saw my youth as a curse in that I'd gotten something so early in life, when in truth it could actually be a blessing. It meant I could get the hardest, most effective treatments possible and recover from them fitness wise too. It meant I didn't have a family or have other concerns like a job and finances to take care of - in fact I was lucky because my family was on my side the whole journey and would be only too willing to be at my side the whole way through my treatment. And I realised that by being young, I would be able to get back to being normal in maybe 3 or 4 years where others would be afflicted with side complications and other things their whole lives. 

So maybe the bad news was that I was 17 and I had cancer. But the good news was I was SEVENTEEN and I had cancer!

And you know what - for you in your problems - that idea that powers you along - for me it was my youth - what my y can be something like your family - your spiritual beliefs - your gritty, stubborn attitude, your doctors, nurses, teachers or the resources you have on your side - there will ALWAYS be something on your side - and chances are you will have LOTS of things on your side in your battles.

Seeing it things in another light is a big reason why I'm still here talking to you today. You could dismiss it as me just being courageous or something born out of necessity because I was put into such a hard situation.

What I want you to do is ask yourself why?

Why should you have to get cancer or face your own mortality to benefit from what I've learnt the hard way?? In truth - what I did was 4 simple things that ANYONE CAN DO.

1) I took a step back and analysed myself without my emotions in the way. You guys are probably doing this all the time already - for example when you look back at your day and look back at how you handled certain situations!

 2) I looked at my doubts and broke them down by repeatedly asking WHY?

 (3) I realised there is ALWAYS A SECOND, MORE POSITIVE WAY TO LOOK AT THINGS.

(4) I acknowledged that my journey would be hard - that I'd go through pain and that there'd be obstacles on the way. But I remembered all the things on my side and I knew that though it may take a while, I would get better.

And here I am - 2 years, 7 rounds of chemotherapy, a fatal dose of radiation and 2 bone marrow transplants standing here telling you these things today!

You guys can do the same - for any and all of your problems, your doubts, your insecurities and you can motivate yourself to be better, healthier, happier human beings.

Don't wait until you face a life threatening disease to change. Do so now and you can lead a happier, healthier, more motivated life.

If you want to read more about how I changed my attitude and how you can achieve your goals with the 4 things I learned- click here to read MY STORY

If you want to see how exactly I changed my attitude and mindset and how you can do it too - click here to read CHANGING YOURSELF.

https://www.facebook.com/musingsofamedstudentpatient <-- If you or a loved one needs help or if you enjoy my blogs or if you're interested in medicine, like my page on facebook =]

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Hope in Medicine.

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I'd often wondered why after being told about being told that I had a deadly disease, everyone seemed to be trying to lift my spirits. Everyone but my doctor. 

In the end, he didn't give me a direct message of hope, ever. Not once did he say something like "Don't worry, you may have a 10 - 20% chance of surviving, but that doesn't mean you're a goner," or "I know it seems hard now, but if you go through this, you may just survive and come out a better person," or "It's okay kid, those other doctors suck compared to me."

 

And I can see why. As a doctor, you can't sugarcoat bad news to a patient. You just can't. You've got to be honest to them, no matter how bad it may seem. You can't go into every room and cry out "Don't worry mate, you'll be fine. Just give it a few weeks." 

Giving people false hope will, in the overwhelming majority of cases, be more harmful than telling them the honest truth. No matter how bad the news may be. To be given that hope and then have it taken away when you are told that you're terminal, or when you realise that your life is now filled with medications and restrictions when someone told you it'd all be the same is deceitful, and just cruel. 

And the worst thing is, if you do that as a physician, that patient, or his family and friends will never forgive you. And that's not easy to take. In fact, it's devastating. 

Doctors are, in the end, human.

Yet they still have one of the most important roles in helping people in their times of need, often second only to that of the patients themselves. And their opinion, words and messages are more often than not held in the highest regards by those who they're caring for. They're the professional. Of course their opinion matters. 

In my case, I held my doctor's words in the highest regard. He was the one who knew about my condition, the one who was guiding my treatment, the most vital part in my battle with cancer. And, if you've seen my last post, you'd know that I'd managed to see his words in another light to manufacture my own hope.

But not every patient will be able to do that. 

Some will resign themselves to believing that a bad prognosis or survival chance is equivalent to certain death. They may believe their life is cursed by their chronic condition, or that they're inferior and inconsequential because of their learning condition.

Being a doctor isn't only about treating a condition.

You, as a doctor, have a position of power over someone who is at their most vulnerable. You're often the one they trust the most, the one they truly believe, if only because you know more about what's wrong and how to fix it than they are. You therefore have a duty to help them out emotionally and mentally as well as physically. And to do that best, you should help them past their despair and try your best to make them happy beyond that.

You could be the only one who can do that. 

You should remember to be honest. You can't, and shouldn't make up stats or figures or make blithe statements to deceive a patient of their condition. You owe that to them, and yourself. 

And you've got to understand that some people just won't make it.

And that if it comes to that, they have to know.

No-one is immortal.

But how do you hit that balance between giving hope and deceiving someone?

It's not easy. Remember each person is different. And that some will not, or cannot, make themselves accept their disease and move past it. But that shouldn't stop you from trying to pull a patient out of their angst and misery after they've heard bad news. 

You won't happen able to impart hope straight away. They are likely to go through the 5 stages of grief - denial, anger, bargaining, depression and acceptance, even if they haven't been given a death sentence. I know I did in my condition and I've seen it in others with different diseases to me in my life too. You have to try to get them past that before you can start to give them hope, or happiness.

Maybe you could try referring them to a psychiatrist. Maybe you could remind them of the things on their side - perhaps, like in my case, their youth or things like their faith or support network. Maybe you could remind them of their usual optimistic outlook, of their beautiful personality or even of their stubbornness and why that person wouldn't be letting a little disease or condition pull them down. Maybe it's as simple as giving them someone to talk to - someone to understand them. 

Or maybe you won't have to do anything. Maybe you can't. They may, like me, come around themselves or with the help of those close to them. They may be unable or unwilling to put their grief behind them. 

In the end, you've still got to try. 

But your responsibilities as one who may have the biggest impact on how they deal with their disease go even further than just getting them past their misery.

After getting through those 5 stages, I believe there's another stage a person can achieve. But unlike the other five, not everyone will go through it. The best word I could think up to describe it is optimism. But it's not perfect, as it can imply it's only about someone believing they're going to get better.

 As a someone who they trust, you should be trying to move them there too. 

That's where it gets hard though. You mustn't make them think that they're cured, or will be 100%, or that they will have a completely normal life afterwards or that there wouldn't be pain to come in the future. But you have to convey to them that it doesn't mean that they can't be happy, or at least content in their struggle, or in their acceptance of fate. And if they do have a chance, you'll want to give them hope that they're going to get better.

But how do you do this?

First of all, be honest to them.

Remember, you can't and shouldn't kid them. But once they've accepted their diagnosis, try to make them see their new life from a different, more positive perspective. 

Remind them that it's your job to tell them the truth, no matter how hard it may be. But then make them realise that they'd give themselves the best chance of surviving, or leading a normal life or just being happy by being positive about their circumstance. The placebo effect isn't considered in all medical trials for nothing. It may not always save someone from their fate, but it's definitely able to increase their chances. And, logically, if they could give themselves that chance, then they should try. Remind them that even a 10 - 20% chance is still just that - a chance. And they should do everything they can to be in that group of people who survive, both mentally and physically.

Remind them that statistics don't mean anything to an individual. It doesn't consider your personal circumstances. They may have things on their side health-wise that others who made up that statistic or chance didn't like their youth or a more promising prognosis on their particular disease. Even if they don't, they will always have something on their side emotionally. It can be hard to see that. But you can help them understand that there will always be another way of looking at their condition.

Yes, they may have diabetes now and have a chance of developing complications due to it later in life. But when they change their lifestyle, eating habits and start to exercise, they will have a lower chance of developing metabolic syndrome or other diseases. Yes, their broken leg may stop them from work, school or sports in the short term, but it will allow them to really focus on their studies, career, kids or relationships more intensely than they could when they were healthy. Yes, their battle with addiction may be hard, but will turn them into a stronger, more happy individual when they get through it. 

And no matter how hard it may seem, if you help them acknowledge that it will be hard, but reassure themselves of the features that will allow them to get through it, they will not be stopped by obstacles in their journey as they know what to expect and know that it can't stop them. 

Even if they don't want or can't find it in themselves to see their disease in another way, get them to wonder why they should be sad or depressed because of it. They're only harming themselves by doing that. And remind them that they can make the most of life no matter what their condition. Even if they're dying. 

It won't be easy, it may take weeks, months or even years. And it's not like every patient you'll ever have will want to think that way just because you've burst in, cape billowing in the air currents of hospital air conditioning and pronounced that they've got a chance or can be happy with their lot in life. Some people will not have it in them, or may have been through too much to see it in another light. 

But your words will likely have more impact than a lot of others in their life. You have a duty to try. Even if sometimes you may get hurt. Even if you rarely get the time.

And if your support helps only one person live, or be happy despite their problem in your entire career, then you'll be glad you did it.

https://www.facebook.com/musingsofamedstudentpatient <-- If you or a loved one needs help or if you enjoy my blogs or if you're interested in medicine, like this page on facebook =]

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