Dealing with Depression.

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My uncle and his family had come over to visit a few weeks ago, and in the middle of some idle chit-chat, Dad asked us a question.

"What gives you happiness?"  

After a few moments, and a few awkward looks around the room, everyone simultaneously blurted out their response.

"Success," said my uncle.

"My children," said Mum.

"Gaming," began my brother, "And pizza." Typical Nirav.

Dad looked at me expectantly. He'd already asked me this a few weeks ago, and I knew why he was asking it now. One of my family members, let's call him Steve, had just been diagnosed with depression - and Dad thought my answer may just help.   

"So, what's your answer, Nikhil? What gives you happiness?"

"I do," I responded.

Everyone was taken aback.

After a few years of bad news, pain and struggle, my perspective on all this was a little different. I'd realised that you always had a choice on how you viewed your life.

"I mean, it's your brain. You control how you respond to things. And me - I choose to not let things affect me negatively, I guess." I continued, glancing at Steve as I said this.

Dad was looking that way too. I guess both he and I expected a sudden flash of realisation to pass through Steve's eyes. But it didn't. He just sat there, looking utterly bored by the conversation, the same expression he had the whole visit really.

What I said made sense to me and to the rest of the family sitting around in the room.

But when you've been wired, emotionally and physically, not to feel anything over weeks, months or even years, it's not like you can change straight away.

That's what clinical depression does.

And after talking to Steve, and a few other friends of mine who are going through it at the moment, it's made me really rethink a few of the misconceptions and attitudes out there about depression...

Here are a few of them.

1) Why can't they Just "snap out of it" and "be happy"?

That's something people going through depression hear a lot.

But think about it this way - don't you think they've tried this already?

 When you're depressed, you get a physiological change that accompanies psychological change in your brain, meaning that the chemicals that are usually released in your brain to make you feel happy aren't performing that function anymore. So a lot of the things that used to give you happiness don't anymore. And  because of that, you find yourself just not caring about things.

The spiral downwards can make patients more likely to go through anxiety at the same time as depression. And when you're worrying about things, yet at the same time can't find the energy or motivation or care to deal with them, it can all build up like a snowball. 

So telling someone going through depression to snap out of it is like me telling you to throw a 10 kilo shotput 20 metres. You know that it is physically possible. Hell, in your youth or at your peak, you may  have been able to do it at some point in your life. But if you were to try it now, you'd probably fail. 

Now imagine if everyone close to you and wider society told you to keep trying, no matter how unfit or how physically impossible it is. Imagine if they sat by, jeering, booing, even screaming at you, as you tried, over and over again to do the impossible. 

That is what someone going through depression feels like when you tell them to be "just be happy". Hopefully, by understanding that, you won't inadvertently kick someone when they're down next time...

2) So, it happens to those going through some form of loss or through some recent dramas right?

Depression can affect anyone, at anytime and there are many things that can cause depression.

Often, it's long term things like unemployment, isolation or loneliness, low self esteem or prolonged exposure to stress at work that can cause it. Recent events such as the loss of a job or poor exam results or a breakup can trigger it, but often there is that underlying cause behind it.

There are a lot of other things that can cause it too. Things like alcohol or drug abuse, medical illness, a family history of it and your personality (being a sensitive person, or a perfectionist for example) can predispose you to higher chances of getting depression.

And in a lot of cases, people just don't know why it's happening. They've been conditioned to feel pity for themselves, to not feel; too used to failing when they try to get better that they don't wanna try anymore. And that can be frustrating as hell.

3) But they seemed happy when I talked to them... I mean... they didn't seem depressed.

A lot of people going through depression  go through phases. They will often go weeks or months feeling and functioning normally until they suddenly get into a rut for a few weeks, where they start to feel less connection to things around them and less enjoyment from things they used to like.

As you know now, when they get into that rut, it's not like they can just climb out straight away. And if you don't know or can't explain why it's happening, if you can't see what's going on, that hill you're trying to climb becomes the sheer wall of a mountain.  

Often people will put on a mask in the form of a second personality to the outside world during this time out of fear of what others think of them. 

In a fair amount of cases, they may even have bipolar disorder, or a milder form of it (cyclothymic disorder) - making them more likely to have more severe shifts in their mood.

They may even deny it. Because it's not the "manly" thing to do. 

In truth though, coming out and admitting you may need help takes more courage than hiding behind a wall. Great organisations like Soften the F*ck Up wanna make that clear. if you're feeling that way... why not check them out? 

4) It's only a sign that they're weak in the mind. I've been through things 10x worse and look at me - I'm fine.

Congratulations...

No, but seriously, good for you.

But when you've been brought up a certain way, when you've been feeling that way for a while and when your brain is literally wired to keep you feeling that way, it's not like you can just change overnight. 

And why should the fact that others have been through worse times make them feel better about themselves? In truth... the shame that makes them feel when they can't do what you did digs them only deeper into that hole. The fact that others' suffer more only makes them more likely to see the world through negative lenses; and push them to even more drastic actions.

5) They're only having a sook. Depression can't actually affect you physically...

As I said before, depression not only changes your thinking, it also changes your brain and body's normal functioning. So not only do you lose motivation to go out, to do work or school stuff or your usual enjoyable activities, you also lose the ability to concentrate, you feel tired and sick all the time and you get other symptoms like headaches, sleep problems and significant weight loss or gain. In severe cases, thing like psychosis and hallucinations are possible as well.

Check out these links for examples of what it feels like to go through depression:

http://www.buzzfeed.com/hnigatu/comics-that-capture-the-frustrations-of-depression

http://www.depressionquest.com/

If you've got depression, and if you'd had it for a while, it can seem like it's a pit that you just can't get out of.

But there is a way out. It isn't something that can't be cured. And you CAN be happy.

It will take time, it will take effort, and you may fall a few times on your journey.

But you CAN beat depression.

And here's a few tips on how:

1) First of all - don't be ashamed of it.

Depression affects a lot of people. And if you feel ashamed about having, or maybe having it - ASK YOURSELF WHY.  

Why is it shameful to have a medical condition? As you know now - that's exactly what depression is.

Why should you let what others think dictate you and stop you from trying to get better? Why should you let what others THINK about you cause you harm?

If other people don't understand your condition - that's just showing you that they don't have the capability of understanding what depression really is. So why should you feel ashamed for their ignorance?

2) Don't be afraid to ask for help.

A lot of people - men in particular - feel that it's something they have to tackle on their own. That asking for help is a sign of weakness or something they don't want, or can't do. Well, you can do it that way.

First of all, why view asking for help as a sign of weakness when in truth, putting yourself out there to someone is a sign that you're not afraid to put yourself out there. 

Why make it hard on yourself?

If you have someone close you can talk to - a friend, family member or partner - be open with them. They'll understand if you tell them how you feel, and having someone to talk with through your journey makes you more likely to beat it and more likely to be happy. If not, that's fine - you can always talk to a psychiatrist, you will have access to resources like www.headspace.org.au or depression hotline (depending on where you live) and you'll always have me as well . Feel free to drop in a comment down below (anonymously if you prefer) or hit me up on facebook/youtube/email as others have before on my blog posts and I'll try to help you out.

If you think it's something you shouldn't talk about openly - that's fine. I mean not everyone thinks its dinner conversation and some people may not know what to say. 

But having at least one person who you can talk to openly during your battle will make you that much more likely to succeed. And if you don't have that person, or aren't too comfortable talking openly about it, here's a great site that helps Real Men get to the deeper issues affecting them. 

If you're scared of taking that first step with someone in real life - here's another site that may help:
https://moodgym.anu.edu.au/welcome/new/splash

3) Cognitive therapy

A major treatment pathway that psychiatrists use to treat depression is Cognitive therapy. It's where you attempt to fix your current thought processes by confronting and challenging them, and replacing them with a more positive, better outlook. It isn't an easy process, it takes time and effort and it REALLY helps to do it with someone you can trust.

But the hardest part is the first few weeks, those first few steps. Once you muster up the energy and will to try and get better and get past the first few weeks, things WILL get easier.  

In the end you've got to believe one thing. You CAN beat it.
That word depression is a useful label. It allows people to understand that what they're going through isn't fake. It's a real problem. With real solutions.
But that label becomes a liability when you let it define you. 
Never do that. 

If you, like millions of others around the world, really find yourself wanting to break free of depression, then:

 i) Take a step back and analyse yourself

ii) Acknowledge that your journey forward may be hard and long. But realise that instead of getting scared of that fact or making excuses not to try, doing this will ensure that you won't give up at times when you may feel like everything's against you.

iii) Challenge any notion you see that is negative by asking WHY.

Soon, you'll be able to see another way of looking at things.

And that's the first step to getting better.

A common negative pattern of thoughts seen among patients in phases of depression is one of lowself esteem.

Thoughts like "I'm a failure," or "Nothing ever good happens to me," or "There's nothing special about me," are commonly seen in depression and this questioning of self-value or self-esteem can lead to ultimately deadly thought processes like "Life's not worth living."

If you're struggling with that yourself - challenge these ideas and ask yourself why.

During my first bone marrow transplant, I was put on a treatment protocol which made me gain a significant amount of weight (20kg in about 2-3 weeks as a matter o' fact), get a moon face and lose a lot of my physical prowess.

I went from being pretty fit and sporty to not being able to run more than a hundred metres without fainting, and I went from looking like this:

To this (I'm the one in the middle):

So when I got back to university and started mixing with people my age who were much more energetic and, well, normal, compared to me, I began to really doubt myself. I'd begun to look in mirrors with disgust at what I now looked like. I kept thinking to myself, "Imagine what other people are saying behind my back." Before I knew it, I began to question myself more and more until I, subconsciously, started making my health an excuse not to go out with friends and have fun.

Whenever I got to doing exercise, I'd always do so under the cover of night or where people were less likely to watch in fear of what others would think about my huge level of unfitness, or worse yet, I would opt out of doing any at all because people would see me and laugh at me.

I was getting frustrated all the time, and I was began to hate myself. But then, one day, I took that step back and I asked myself why.

Why was I afraid of what other people were thinking of me?

First of all, were they even thinking about me in the first place? I mean, when I walk down the street, other than noticing a few finer specimens of the fairer sex, I don't really take too much notice of other people unless they're literally about to walk into me.

Even if they were thinking "WOW, what an ugly bastard," - Why was I letting their thoughts affect me? In the end, wasn't I putting myself down in order to please someone else - most of the time, complete strangers - over something I couldn't control?

I did the same thing with my exercise patterns and I found myself more comfortable running around over the next few weeks. I did little things at first - like walking few laps around my suburb and saying hi to people (most people are friendly and just say hi back - like you probably would) and soon I was comfortable enough to start running again.

Along the way - it was frustrating. I'd go weeks on end not gaining any fitness whatsoever and seeing no changes at all.  But each time I felt that way, I challenged that thought process and got to a stage where I realised that, maybe not now, maybe in a few months, I'd be back to being better. 

So why get frustrated that I was not getting there quickly? In the end that'd only cause me to stress (which is huge in reducing your progress) and if anything push me to overexerting or even injuring myself, which would only make my journey longer.

It was hard at first. I found myself looking over my shoulder and wondering what others were thinking about me all the time. I did it the hard way - I didn't talk to anyone about it.

But, over a few weeks, taking that step back, acknowledging the obstacles in my path and challenging my doubts allowed me to become comfortable with who I was.

I know that my depressive mood was self imposed and not the same as being depressed for years on end. I've come to experience real depression since I've written this, and will be writing about it soon... so hopefully my insights from the inside out can help you even further. While I write it up though - I'm always happy to talk - do so here or on my other links.

But if you think that you just can't do what I'd done in your battle with depression - ask yourself why.

Those thoughts you may have that stop you from trying to break free of its hold - those thoughts  of being a loner, of being  too stupid or dependent or scarred... that idea that you're worthless or don't have the energy... aren't they just reasons you're giving yourself to not try? 

If you really believe they're true and that it is a good reason to stop it - then why put yourself down over them? Isn't that just stopping you from doing what's logical - making an effort to change yourself for the better?

It is hard - it may take weeks or months to change yourself. There may be times when you fall back into pits. 

But if you talk to someone about it and give it time, you CAN get better.   

You're the end result of millions of generations of evolution. The very fact you exist, and that you can hear, touch, see and simultaneously  feel is incredible. Even if no-one else in the world recognises it - I think you're amazing.

For more info on how you can change yourself --> Check out this post:

Keep Smiling - Humour #3, Hallucinations #2

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                                Last #HIH                                                       Next #HIH

I was sitting in the car the other day talking to Dad about this and that when I remembered a video I saw earlier that day.

It was of me, a few months ago, as I was suffering from hallucinations caused by PRES syndrome which I'd developed.

You see, during chemotherapy, little things like uncooked food, contact with other people and pieces of hair (which I was shedding at the time like a dog in summer) are deadly infection risks. And so, in my deranged state, I was so scared of those bits of hair that I envisioned millions of them floating around, trying to find any way of getting into my body.

And so this video came to be.

To my eyes, that nasal cannula - which was pumping out oxygen - was blowing the locks of hair I was seeing, and afraid of, away from me. It was like I was totally high right? And my reaction to it? Hilarious!

But when I reminded Dad of this a few days ago, struggling to contain my laughter as I gave the best imitation of my past self, I got a completely different reaction.

"Don't you realise how scary that was?" He said abruptly, looking at me in my mirth as if I was crazy.

I was shocked. My dad - usually the joker of the family - didn't think THAT was funny?

"You almost pulled out your central line a few times then! Matter o' fact, I had to slap your hand away to stop you from doing it..."

I guess going through pain and struggle yourself is different to having to watch those you love go through them... When I first watched the video, I didn't hear my mum's panic when she told me that was enough... I just saw a very delusional version of me having the time of his life.

How I take it now though is that all that was all in the past... and so it can't hurt or traumatise me now unless I let it. But I didn't realise how hard it was on my parents... and how hard it still is on them.

When you go through tough times, not just medical emergencies like me but also things like financial difficulties, stress or things like depression, you often only see your own suffering. You forget that those around you suffer just as much. 
In fact, I think at times they suffer more than you. Just because they can see your suffering, but can't do anything to help you.

I didn't want my Dad to go through that pain every time he remembered that taxing week.

But how could I make sure he didn't?

Well, I know my Dad. And I know that, like most people, he loves to laugh.

And so, after a few minutes, I broke the awkward silence that had brewed between us.

"Do you remember that hallucination where I thought I was being attacked by foxes?"

I could see him visibly stiffen as I said this. 

When I was young, probably around 10, I remember Dad telling me a story about foxes breaking into chicken coops. What I, in my hallucinogenic state, got from that was that foxes could get anywhere.

Even into locked up hospital wards at night.

And so, one night, I was attacked. Not just by one, regular sized fox, but hundreds of tiny ones! The foxes- none longer than my forefinger, but all perfect in their aspect - had somehow galloped through emergency, waited patiently in lifts and thrown themselves against my door like a living battering ram until they'd wound up in my room...

I didn't even question it. My mind had taken that story by dad and added all the sensations I needed to make it seem completely real. I could smell that smell of wet fur, could hear the padding of their paws on the ground and feel their weight on my bed as they leaped onto it.

"Remember when they all started biting me? And how some got onto my line? And me tugging at 'em to try and get them off it?" I continued. Again, Dad looked at me as if I'd lost it.

When that had happened, I'd obviously started getting a bit too hard to manage. So Dad had to call the nurse in.

I was in pain, and no matter how much they told me not to, I kept trying to grab at my central line to get those damn foxes off it.

"So do you remember how you got me to pull out of that one?" I asked. 

What happened next was amazing. 

Dad smiled.

What the nurse and Dad had done next that night was incredible. They played along with my hallucination.

"Watch, Nikhil!" said Dad. "June's kicking them all out!"

And so I looked over towards the door of my room, and sure enough, there was June, shepherding hundreds of those miniature foxes into a circle and shooing them out of the room. I whooped in joy as piles of foxes were pushed out of the door. 
Anyone who was looking in would've been shocked. What they would've seen was a nurse opening and closing a door repeatedly while an animated man pushed and kicked at thin air. All the while another man sat on the bed, glee written on his face, as he watched them do so. 

"Sleep now Nikhil, she'll get 'em off you. Don't worry, I'll make sure they're all out."

And sure enough, next morning, there were no foxes in the room - and none stuck to my central line. Dad added his own touch for that one. When I asked about it - he insisted that one of the doctors had pulled the foxes on my line off with a pair of pliers. And to me, at that time, that made perfect sense.

"I can't believe you bought that though," he said to me, still smiling.

Dad's smile as I reminded him of that night was a good sign to me. I knew that next time that night came to his mind, he'd remember my relief as I fell asleep rather than the panic he'd felt as he pushed that emergency button to call the nurse.

I knew one story though, that could turn that smile into a laugh.

"Remember that time I told Dr B about my weird symptom?" That smile grew a little wider...

For some reason or the other, the toxins in my brain that were affecting  me decided to act on the brain's smell centre on one day. Everything just smelled off... Everything I ate tasted weird...

And so when my registrar (pretty much a specialist in training) came in to visit that morning, I had to ask him about it.

As he leant over and examined my belly, I blurted out, imperiously, "Doctor, something's very wrong with me. I think it's serious... you've gotta stop it!"

"What is it, Nikhil?"

"My farts. They smell weird!"

He looked a little bemused at first, then, recovering from that announcement he assured me, "Don't worry, Nikhil, I'm sure it'll pass soon."

"But it really does doctor!" I urged.

And then, without warning, I lifted my blanket and turned to my side and said, "Here - smell!" before proceeding to let off one of the best farts of my life.

It was magnificent. Triumphant. It went on for at least three full seconds.

 If he was bemused by my suggestion that a changed fart could be a sign of some fatal disease, he was left dumbfounded when I showed him.

Dad finally cracked up as I told him that one. "You remember his face as he copped a faceful? " He managed to croak out between bursts of laughter. "He was literally lost for words."

And he was. He couldn't even look at me for the next week without the curves of his mouth creeping into a smile. I honestly think that's the reason why he was taken off my treatment team for a few weeks.

There's something about Dads and fart jokes right?

I knew now that from that moment on, whenever my Dad would remember that week and a bit I spent undergoing seizures and being rushed in and out of the ICU, he'd remember that consultation. And I knew that now, looking back, he wouldn't be haunted by the suffering he and I went through. Instead he'd be looking back and smiling.

To those of you with loved ones out there going through hard times. I know it sucks.

That feeling of uselessness when all you can do is watch on as your brother, sister, parents, partner or friends suffer... it's heartbreaking.

But know this.

You will ALWAYS have a second way of seeing things.

And when you can see the funny side of things... you'll not only keep those who are going through tough times smiling, but also yourself. And that's important.

Don't get me wrong, I'm not saying that you respond to bad news by giggling or making a crude joke. What I am saying is that, maybe not always straight away, but after some time, you can choose how you go through and how you look back at hard times...

You can remember that time where your son shouted at you to kill him, or his face, contorted to horrific positions during a seizure or when he had to have his arms completely restrained to stop him from pulling out his central line.

Or you can remember those times of laughter in the midst of it all.

That look on utter bedazzlement on the doctor's face as he was asked to diagnose a fart. The triumphant look on your son's face as the nurse ushered the phantom foxes out of the room.

In the end, those are the times that mattered.
So enjoy them.

Dealing with Pain, Stress and Worry.

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Pain is something that, as a cancer patient, I'm... well... let's just say, familiar with.

From having needles drilled into my hip bones, calves, lungs and veins to bouts of diarrhea and gut pain lasting weeks to spending 20 days with bleeding gums and a throat so clogged up with ulcers that even swallowing saliva led to excruciating pain, saying I've been through a bit of pain over the last two years would be a massive understatement.

You'd think that after going through this, I'd have gotten used to it by now. That the body would adapt to it all somehow. That my pain threshold had increased.  

Unfortunately... it hasn't.

Christopher Paolini aptly named pain the "Obliterator." While you're going through pain, the only thing you think about is getting out of it.

Pain is pain. There's no escaping it, and at times in your life, you will have to go through it.

What you CAN control, however, is HOW you let it affect you.

You see, the biggest pain we feel is the one we put on ourselves.

Worry, stress and panic causes more distress than an actual procedure ever could.

And no, this isn't just limited to circumstances that involve physical pain. Before walking into an exam room, or a job interview or before a big game, how often do you find yourself pacing around nervously, doubting yourself to the point that you second guess yourself? How often do those doubts manifest as panic as you forget the answers to simple questions you know you'd get normally, or bouts of stuttering in the middle of conversation or a second delay which made you miss that open shot? After finishing the event, how often do you think back and wish you'd done something different?

Looking back on how you've acted in the past, do you ever wonder why you did all those things? 

Did it end up accomplishing anything? 

Wouldn't you have given yourself a better chance of succeeding, or just saved yourself some suffering by changing yourself to NOT worry or stress about things you can't control?

Well, it isn't always easy to do this. Sometimes, you'll find yourself doing it subconsciously, or just as a habit. And you may think it's something you have to bear with.

Well, it isn't!

The same, simple, lessons I took from learning to stay positive in cancer can help you see past these things too.

Whether you be dreading an upcoming surgery, or panicking before you enter your exam hall or just getting worked up as you're running late for work, next time you find yourself in a stressful situation, just do these 3 things.

1) Take a step back and re-examine situation.

2) Ask yourself WHY you're panicking, or worrying. Soon you'll see that the stress you're putting on yourself isn't doing anything but harming yourself.

3) Instead, focus your mind on the future and HOW you can make yourself more likely to succeed. By doing this you'll not only be more likely to be successful, you'll also be HAPPIER along the way.

This can help you get over your worry before, during and after an event. It won't reduce the pain you have to feel, or the work you'll have do. But it will increase your chances of success and reduce your suffering immensely.

So how has this attitude helped me prepare for pain?

For the first few months of my cancer treatment, I hated getting needles. Unfortunately though, it was something that had to happen. I'd never been that afraid of needles before, to be honest, but the sheer number I'd had, and a few missed injections made me even more paranoid of getting jabbed than ever before.

This fear got so bad, that one night I refused to have blood cultures done by anyone even though I'd spiked a fever while my blood counts were low - a very dangerous predicament that needs to be dealt with quickly.

The next day, I found out how important that blood test was the hard way. I developed a throbbing pain and diarrhoea from an unknown infection and within a few days, I found myself having chunks of tissue removed from my calf to diagnose the infection that hadn't been found because no culture was done.

I was pissed off. Angry at myself.

But, after a while, I resolved to do what I'd done to stay happy through my cancer. I took a step back and looked at what had happened without all the emotions and ask myself one question.

Why I was scared?

It was on that night that I realised that the intense fear I'd work myself up to before they'd take blood was more painful than the actual jab itself could ever be! That the pain I'd felt while they took some blood was nowhere near the potential harm, possibly even death, that would come from an infection that wasn't treated early!

And, looking at myself in the present, that the self-loathing I had from not doing the blood test was not accomplishing anything.

That was a huge turning point for me. It was the night I learnt that it was ME who was harming myself.

It's not like I cut out that worry immediately after seeing that... I mean, it's not like I like getting needles now... I don't think anyone does.

But you know what? I no longer let things I can't change, or things that have to be, affect me.

And you can too.

So the next time you find yourself wondering why you hadn't started preparing earlier for an exam the next day, take a step back and ask: Why am I doing that?

By lamenting over what you hadn't done, you're just stopping yourself from studying that little bit more or from getting that bit of extra sleep, which would keep you alert in the exam. It could be the difference between passing and failing.

If you're worrying before your grand final and afraid of failing, ask yourself why you're doubting yourself and what that worrying is accomplishing. If you've done the work and put in the effort, be confident in that, and focus on possible plays or the opponent's weak points instead. I mean, isn't that the most logical, best thing to do in that case? And by simply playing your game best, you'll give yourself the best chance of winning.

Over time, you'll get better and better at doing this. And you can apply it to all aspects of life. And with it, you can conquer your fear, your nervousness and your shyness.

But what about while you're going through something?

How do you stop yourself from stressing or panicking when you're in the midst of a problem?

If you'd read my post on Mary Johnson before, you'd know about that night I had a reaction to some of my blood products. After the bag of platelets was half empty, about twenty minutes in, I noticed my face was starting to itch. In fact, I found myself itching everywhere, and soon enough, my lips were swelling up to twice their normal size.

I pressed the emergency button and nurses and the emergency doctors started streaming in.

They were amazing, finding out what was wrong, getting medications up and ready and, most importantly, keeping me calm, so I didn't end up pulling out my lines or lapsing into unconsciousness.

It was all going fine... 

Until my throat began to swell.

That's when I felt myself start to panic. Eyes wide, I glanced around in all directions, looking for help. I tried to sputter out what was happening, but panicked even more as I found my words weren't even coming out. My mind was telling me to lurch out, to pull away at the nebuliser that felt like it was constricting me, to kick at the nurses and doctors who, despite all their assurances and calmness were scaring me with their sudden presence.

Then, in the middle of all of this, I took as deep a breath as I could. I stepped back and asked myself WHY. Why did I want to pull the nebuliser away? The mask may feel constricting to my face, but it was the only thing keeping my airways open at the time. Why was I scared that there were so many doctors and nurses in the room? That they were here was actually a good sign and that they were calm and focussed meant they'd been through this all before and that I'd be fine. Why was I panicking about it all? It may be uncomfortable at the moment, but by simply laying back and observing things as they went along, and being curious about what was happening (I'll probably have to be the one administering the care to someone going through something similar in the future), I'd distract myself from all those things and recover quicker from this episode as I wouldn't have an exceedingly high heart rate or other complications which could make the emergency worse.

By doing that, in my mind, I changed that experience from a frightening, horrible experience, that could have turned out much worse had I continued to panic, into a lesson.

If I was a doctor who had to walk into an emergency situation like mine, I'd handle it the same way.

First off, I'd take a breath and step back and control the panicking urges by just asking WHY.

Why should I doubt my skills or my knowledge? That wouldn't accomplish anything other than making me  more likely to hesitate, and hence more likely to fail, right? Why should I be scared of the consequences of failing? In doing that, I'd be losing time and energy that could be focused on getting the poor guy on the bed through all this.

So HOW could I get the patient through this. Other than all the emergency protocols and knowledge that I knew - what were the best things I could do for him?

One of the biggest things that comes to mind, considering my own experience, would be to keep the patient calm. I mean it's only logical. By keeping them calm, I'd reduce the chances of the patient lashing out, I'd reduce the risk of unconsciousness due to increases in heart rate and respiratory rate and I'd keep them subdued. So it's only logical that I should try to do this.

How? One way would be to talk the patient through it all. You could tell them about how many people come through their emergency just fine, or tell them how well the procedure is going or even encourage them to practice those three steps I preach on about themselves. Acting confidently, even if circumstances are bad is something that helps too! From my own experience, it's something which is extremely reassuring when you're going through hard times.

So again, by taking a step back, asking WHY until you clear your doubts and focusing instead on how you can best win past that situation, you'll give yourself the best chance of winning something. Indeed, if you think about it, it's only logical that you do this!

What about the pain we cause ourselves after an event?

The nightmares about the past? The longing to go back and go for that kiss or to change that answer from "A" to "C?"

One thing I've learnt is that THE PAST CAN ONLY AFFECT YOU IF YOU LET IT.

If you're worrying about the results of the test you've just done, if you're wondering whether or not your presentation came off as expected or if you're punishing yourself otherwise for something you've already done - take a step back and ask yourself WHY? In the end, you're only making yourself unhappy.

I know you're probably tired of me saying it, but in the end it's the message I'm trying to put through.

YOUR MIND is what perceives everything that happens to you in your life.

That means YOU decide how you feel.

And I hope by reading this, you can, if not escape pain, at least realise that you don't have to let it control you. 

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 =]

You will ALWAYS have a second way of looking at things.

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A speech I gave at the Leukemia Foundation's "Light the Night" event to give hope to other patients and their carers. I hope that it can help you, in whatever challenges you're facing, as well. 

Bone Marrow Transplants Sound Scary, But They're Not. And They've Saved My Life. Twice.

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2 years ago, to this day, I received a bone marrow transplant.

It was the hardest thing I've gone through, as a cancer patient.

I spent weeks stuck in a bed, subsisting on unsolid food, barely drinking and in intense pain - even with morphine!

And for months after it, I was fed into a spin-cycle of maladies, starting with my skin feeling like it was burning for days on end without relief, followed by months of sickness and huge shifts in weight and ending with the a relapse and the knowledge that I'd have to go through it all again in my second transplant.

But it saved my life. 

And I'm eternally grateful for it and for my donor.

One thing that may astound you is the fact that the transplant took only thirty minutes, didn't involve any pain - it was just a minor, drip-like infusion!

Even DONATING bone marrow doesn't mean having a needle put into your bones these days - at any point!

Bone marrow transplants are the cure to variety of illnesses - not just blood cancers/disorders which I speak about mainly on this post. 

It has cured AIDs, which has only happened twice, EVER.

And it's the only way possible for a mammal to change blood types. 
Personally, I've had 3. 

Click here to skip to a particular section of this post:

How it works

Finding a Match

How YOU can become a donor

What happens to the donor

What happens to the patient

So how does it work?

Basically, a bone marrow transplant, also known as a haematopoietic stem cell transplant, replaces your old bone marrow with someone else's. You can also use your own cells for this, but for this post, I'll only talk about allogeneic transplants, ones you get from other people, rather than autologous ones which you get from yourself.

Bone marrow is the soft, spongy tissue inside your bones which make your blood.  It's usually filled with haematopoietic stem cells - cells which rapidly divide over and over again and transform with the aid of certain hormones and chemical messengers produced by your body to eventually become your blood cells.

When a disease process affects these stem cells, they cause a malfunction in your blood cells which has a wide range of complications as your blood is responsible for delivering oxygen and nutrients to your body, and also your immunity, amongst other functions. If that disease involves a change in the actual DNA sequence of the stem cells and divide so it begins to take over the normal stem cells (in other words, if the disease is a cancer) and chemotherapy is not an effective cure for it, then a stem cell transplant can become the best curative option.

Now here, I wanna make it clear what I mean by "Bone marrow transplant" in this post. I'm referring specifically to Allogeneic bone marrow transplants - one received from SOMEONE ELSE. It's possible to have an Autologous BMT too - in a procedure where your own blood stem cells are collected, so that they may be injected back into you after treatment. This is usually done to get very high doses, or treatments that would otherwise have killed off your vital bone marrow for good, into a patient, without killing them. The collected cells are stored and injected back into the patient after treatment has taken effect and remnants of the drugs have left the body.  

What an allogeneic stem cell transplant does is get someone else's bone marrow, blood producing cells into you. Not only does that allow for, if required, the same high doses of chemotherapy and other treatments to be given, it also gets someone else's white cells (white cells are blood cells, made in the bone marrow) into you - their immune system. And this had the added effect of them attacking your cancer cells, where your old immune system couldn't (often, cancers have special mechanisms by which they can evade your immune system), or of getting a new immune system in there to replace the old one. 

The Procedure: 

An allogeneic transplant involves, on the patient end, first, some chemotherapy and radiation to the entire body (blood production, though often limited to bigger bones like your sternum or hip bone in adults, can occur in any bone in the body) to ablate, or kill off, your old, diseased stem cells. Less intense chemotherapy regimes can also be given, in diseases with lower agressiveness or in patients who can't take as much of a battering (my second transplant, due to all the drugs and radiation I'd had previously, was done using a "reduced intensity chemotherapy" regime. Many older patients are now able to get bone marrow transplants where they weren't before due to these regimes).
The major side effect of this step is that your blood production halts, or stops outright, meaning you will be much more likely to bleed and bruise in that period and be very susceptible to infections - which are even more life threatening as you don't have white cells to kill them off. Many of the drugs also have side effects of chemos (they often are chemos), and the radiation itself can cause severe mouth ulcers in some. This in itself makes the procedure very risky.

After this is accomplished, you inject your donor's stem cells into your body in order to replace it. The donor's stem cells take around 3 weeks to engraft, or take residence and begin working, in your bone marrow and from then on your donor's stem cells become your own. Which means that from now on, you're producing YOUR DONOR'S blood cells instead of your own.

The intent is not only for his (or your donor's) cells to take over and start making proper blood cells again, but also to stop your old stem cells from coming back. You see, when his cells take over, his immune system does too. This is what is trying to be achieved in the whole procedure actually, a change in the immune system - as his immune system, being different to yours, will, hopefully, kill off any old stem cells of yours (including your cancerous ones) that remain. This is called the Graft Versus Disease effect (GVD).

The problem is, there is also a good chance that his immune system will also find your body's other organs to be foreign to it and it will attack them too. This is called Graft Versus Host Disease (GVHD). And it is a big reason why it's seen as even riskier than even chemotherapy and radiation.

In order to reduce the impacts of GVHD you are given some immunosuppresive drugs, which, as the name suggests, suppresses the immune system. When given early, it also prevents your old cells from coming back from the radiation and chemotherapy to cause rejection.

Examples of these are methotrexate, and cyclophosphamide, given before transplants to reduce both the risk of acute GVHD and the chances of your immune system from rejecting the donor's stem cells,  cyclosporine in the long term to manage chronic GVHD (GVHD that presents 6 months to years after a transplant) and prednisone, a corticosteroid, to manage acute GVHD (GVHD that presents after engraftment. Prednisone can also be given long term to manage cGVHD, and many of these drugs are used at different points).

GVHD can be life threatening, if not managed well. GVHD is a big reason why a transplant is seen as a very risky procedure. And though acute GVHD is more dangerous, chronic GVHD can have long impacts into the future.

But it's not all bad news. Actually, the presence of GVHD and having a more severe version of it is correlated to a higher cure rate because the GVD will also be stronger. It's a balancing act. You don't want too much severe GVHD but a little bit is good as it indicates a good level of GVD (graft versus disease) as well.
And if you catch GVHD fast, and do as recommended by transplant hospitals, and rush to emergency, or call up your doctor immediately to initiate treatment in the critical periods (up to 3 months after a transplant, or when you feel classic symptoms of GVHD like fevers, gut pain/diarrhoea, skin prickling/redness/rashes or eye dryness. It can affect many other organs in different ways too) - it is often gotten on top of!

Finding a match:

When you're being matched to your donor, it's very preferable to have a complete HLA match. Basically your HLA is how your body recognises and differentiates your own cells from that of other foreign cells. You inherit your own 'HLA settings' from your parents, half from your mum and half from your dad and there are many HLA subtypes people can have, making it very unlikely for two random people to be matched to each-other.

Usually there are 6 main subtypes they look at when they're trying to find a donor to match for you (they can go to 8 or 10 or more as well - I was a perfect 10/10 match for HLA with my donor). You have a 1/4 chance of any sibling being a match for you. In fact, transplants from siblings get lower amounts of GVHD, so they're seen as less risky (by the way - even being a 10/10 will result in GVD and GVHD occuring, as there will always be little differences between your donor's immune system and your own). But outside of your immediate siblings, the chances are very low due to the sheer number of possible HLA subtypes combinations that there are. But they do happen.

That's where the bone marrow donor registries come in.

How you can become a bone marrow donor:

Bone marrow donor registries are usually done by country. It's basically a huge database of people's HLA combinations. 

The process of actually joining the registry varies from country to country but NOT ONE involves too much pain! NOT ONCE will you have to get a sample taken from your bone marrow! What they need is a tissue typing test - a test which checks which HLA subtypes you happen to have.

In the United States, this involves simply buying a $5 test simply taking a swab of the inside of the your mouth and sending it away. In Australia, it involves a 20mL sample of blood, and has to be done while giving a blood donation (which takes less than 10 minutes and is no more painful than a blood test by the way) - and you have to ask and fill out a form in order to do it. This is done to ensure that everyone on the registry will be willing to actually give the donation. In the US a lot of people opt out of actually becoming a bone marrow donor in fear of the procedure, so finding a match doesn't equate to finding a donor, which it usually does in countries using Australia's approach.

With the help of my doctors, I was extremely lucky to find 5 matches, from around the world, and have had 2 bone marrow transplant from them.

Only 60% of people can find one.

So we need you to join up on the registry. Especially if you're from an Asian or Indian or Middle Eastern background. It is more preferable to find someone who's similar to you - whether it be by race, gender or age, and these races in particular have critically lower rates of people joining the registry.

Find out how, if you live in Australia, by clicking the link below:

http://www.abmdr.org.au/dynamic_menus.php?id=1&menuid=2...1

And if you live elsewhere, click here:

http://bethematch.org/Home.aspx

The procedure for the donor:

The actual procedure rarely ever actually requires harvesting of actual bone marrow either (95% of the time it doesn't and a good portion of the other 5% choose to go through the surgery process because they have access to general anesthetic through that pathway). The donor has to go through a series of subcutaneous injections, small injections under the skin - usually into the belly or arm, of a hormone which increases the activity of stem cells and causes them to enter the blood more. From there, blood is collected from the donor from one arm, siphoned through a machine which separates the stem cells from the regular blood, and the regular blood is injected back into the patient's other arm.

There is a chance that you'll need to have surgery to remove actual bone marrow from your bones as well. Though it is unlikely nowadays, the procedure is done under general anesthetic  meaning you won't feel pain from the operation, and is very safe too.

The procedure for the patient:

The actual transplant is a bit of an anticlimax. The stem cells, collected in a bag, are infused into you, just like a saline drip, except with blood. In some cases, or in cases where a complete match wasn't found, you can get a reaction to the actual cells.

What is dangerous during the procedure is the chemotherapy and radiation which kills off your original stem cells.

As with any systemic chemotherapy, your fast-growing cells are killed off. This includes not only your bone marrow, but also things like your hair and the lining of your gastro-intestinal tract. This leads to very low blood counts and hence tiredness, very low immunity and higher chances of bleeding, as well as abdominal pain and diarrhoea or constipation. There are a range of other side effects too such as nausea and taste changes which aren't pleasant to say the least - but all of these can usually be controlled with medications. 

The low immunity in particular is of huge concern. Your neutrophils, the white blood cells at the front-line when fighting infections, plummet to 0 and not only do you become more susceptible to infections, you also become very weak at fighting them. In fact, it's the leading cause of death in not only bone marrow transplants, but also in chemotherapies and even in hospitals. Hence it is important to stay away from other people who may have infections during a transplant, and also important for appropriate hygiene measures to be taken, such as always sanitising your hands before allowing others (including doctors and nurses) to touch you and being placed in a room where the air is always being filtered.

Often, despite these measures, you can still get infections from your own body - it's something you can't help. These usually manifest as fevers or shakes or coughs and the like and are treated very aggressively, as your body has little to no capability of fighting them. Don't worry though - medications can take the place of your immune system while it's weakened - so infections are mostly controlled if caught early.

The total body irradiation is another factor which comes with a range of side effects. The procedure itself is a little daunting at first, involving being beamed with radiation for 20 minutes whilst being placed in a box and held still by rice bags, but after a few times (it's done once a day on a 5-7 day cycle), you get used to it.

Again, it will cause your blood counts to drop and subsequently cause the cascade of side effects that come from that but it also causes skin irritation and in particular, mucusitis - or pain in your mouth and throat which, in my transplant, was the worse symptom. I found intense pain on swallowing - even if it was water or my own saliva and hence spent almost 3 weeks eating little more than less than a tub of gravy or custard and little sips of water. A morphine pump wouldn't even help with the pain, and the sad thing is, 85% of patients who go through total body irradiation get this. But there's a way around this too - a nasogastric tube which allows for food and water to be pumped into your body rather than forcing you to swallow it through a very sore throat. 

There are also other ways of doing transplants which don't involve the radiation aspect of it - and my second transplant is an example of it. It was a transplant whose pre-conditioning only involved chemotherapy(and that too a less intense variety of it) protocol known as RIC (Reduced Intensity Chemotherapy).

Bone marrow transplants are complicated, often risky procedures. They're hard and often scary, and unfortunately necessary for some. But they give a second chance for people facing cancers, and other blood related or autoimmune diseases, at life.

I can never be thankful enough to my 2 donors for what they've given me - a total stranger - to them. And they haven't asked for anything back from me.

They're angels.

I hope for a day where no-one has to go through the things I went through during my bone marrow transplant. 'Til that day comes though, be sure to join your country's bone marrow registry and become an angel yourself.