Facing Fear. Pain, Panic and Relapse.

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For the first few months of treatment, I hated getting needles. 

I’d never been afraid of them before, it was only after getting so many (and having so many miss) that I became frightened of them. REALLY frightened… I’d sweat at the thought of having one.  

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 white-cell counts were low... an infection then could KILL me.

And I found out what the consequences of that were the next day, when I got that infection that almost took my life.

It was after I recovered that I realised I’d be getting hundreds of those things, and worse, over the next year or so of treatment. I got scared again. Hints of panic came over me just thinking about them. But I stopped for a second, took a step back from all of that, and asked myself…  

Why I was scared?

It was on that day that I realised that the fear I'd work myself up to before they'd take blood was more painful than the actual jab could ever be. Indeed, that pain was over in a moment…

What REALLY hurt most was the Worry and Stress I’d feel before that. And in the end… that was all coming from ME.

When I kept asking myself why I was putting myself through that… I had no answer. At that moment I realised the biggest pain we feel is that which we put on ourselves.

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. When I do think about things, even things much more substantial than a blood test (from bone marrow biopsies to bronchoscopies to asking a girl out – the hard things in life), I ask myself why I’m worrying, and then focus on doing everything to get me OUT of pain, misery (and rejection), and do that instead.

I can promise you that if you can take a step back, and question those fears and doubts in your mind, and do so the next 10 times you go through that, your mind automatically deals with those fears. It dismisses them. I didn't realise it when I first started doing this, but neuroplasticity will rewire your mind to make this happen. 

It's tough to do so at the start. It's impossible to do it right away. But if you can get your mind on your side, dealing with cancer, and the trauma it leaves behind, almost becomes easy. . 

Actually how I saw needles back then...

Still do sometimes.

But that’s the worry and anxiety you get BEFORE turmoil.

How do you keep calm, or stop yourself from stressing or panicking when you're in the middle of a crisis?

Well it was on 1 night, during the workup to a second bone marrow transplant I needed, that I REALLY put that thought-process to a test

I was getting some platelets, and after the bag 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. 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 as a doctor-to-be), I'd distract myself from all those things and recover quicker from this episode.

By doing that, in my mind, I changed that experience from a frightening, traumatising one into a lesson.

And I knew, when I did that, that I could do that in the most difficult circumstances.

And I have! That same principle… the same way I got through that, I used to get through my fear of needles, the exams I had to sit for medical school (when life got back to normal – or as normal as life after cancer can) and even helped me to not worry as much about the terrible R-word. It really did.You couldn't help but feel that pang of dread as your doctor called you with results, or as you glimpsed your hospital on the way to work or as you were (and this is something you'd think people would NEVER do) told, yet again, by that aunty of yours about that friend of hers who'd died after relapsing. 

What you can control is how you let that control your life. 

I still have dreams of me being back in hospital. 

But instead of letting my mind run circles about something I couldn't control, I decided to focus on the things I could instead. My eating habits, exercise (however much I could) and just focusing on seeing the good and the fun in everything.

And soon enough, that does become a habit. You do get out of it. 
Trust me, you do.
And it makes that anxious time that much better.



Amen, random person!
 

But it’s harder to deal with when your mind is rigged to making you feel scared at the slightest threat. Real anxiety can be crippling... And I went through that for a while…Luckily it was only that.

During one of my treatments, I developed an allergy to one of my drugs, a severe one that gave me seizures, hallucinations and thescariest two weeks of my pretty scary life.

But it was after that, when the care of the ICU and my neurologist dropped away, that I got REALLY scared. Post-hallucination perception disorder is something REALLY scary. Hallucinations are so life-like, so real, that after seeing things like I had, I’d not know what was real or not. When cars sped by, I’d be baffled by how something could move so fast, when my brother and I played basketball, I’d wonder why it was so hard to jump up and dunk… I was lost, in all senses of the word.

A few times, it got really bad. I’d see something weird and ask myself if this was real or not? Why was I feeling weird? Why I wasn’t in a bed anymore? Is leukaemia actually a thing? Was this all a conspiracy or some sick prank?? And soon enough, I’d start going through a panic attack.

I had a few of these over that time. I don’t even know how long it went for.

But after a time, one day, when I started panicking after I couldn’t puzzle out something I was reading (as you can imagine, novels and movies weren’t the easiest things for me then…), I stepped back from it all and took on that observer space again, and thought, “Why not use my hyperactive mind to pull myself out of this”. After thinking how I could calm my racing mind down for a bit – making radical plans, becoming fearful of everything as this happened – I barked at my brother who was standing nearby to get me the iPad and put on an episode of Tom n Jerry. 

As I watched the thoughtless humour that abounds when a senseless enemy tries to corner its wily foe, my mind slo-wed down to a point where I could manage it, and I realised that this was something that could help!

I watched what must have been hundreds of Tom-n-Jerry videos in those times, but what really got me through that is something you need to deal with any mental illness.

A plan.

After thinking about it, with a clear mind, it wasn’t just the watching of mindless things that helped me get through an attack. It was having my family on the side - having someone to talk to. It was stopping myself from getting an attack, or getting stressed out in the first place – not worrying about the things I couldn’t control. It was telling the doctors about it, and getting help. Trust me – seeing a psychologist isn’t as scary or weird as it seems. In truth – it was just us having a chat for me. The fact that they weren't going to judge me, that, hell, I didn't have to see them again was comforting. 

And after that chat, I realised that those steps are exactly what you need to get through this. They don’t require any crazy amount of willpower or bravery. They’re something ANYONE can do.

And if you do those things, you can beat any demons that plague you!

My Second Third Rebirthday.

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No that isn't a typo. 
Yesterday, the day before and today has been my second, third rebirthday. 

Confused? 

Well it makes sense. See, 3 years ago, on the twenty-eighth of February, a bag of murky red fluid was put up on my infusion pump in the depths of St Vincent's Hospital. These cells were extracted from the arms of a stranger, transported 4000km to my room to be given on that exact day. 

Thing is, I had a reaction to that bag of stem cells mixed with white cells and the occasional platelet, leaving me slowly puffing up like a balloon as puckering red rashes appeared all over my body. The doctors tried every different drug they could before finally listening to me, the patient, and using what had worked before (funny story about that, that still gets Dad mad to this day) to get the cells in. If they weren't done by a certain time, I'd be stuck in this awkward position of having no bone marrow while having to either wait a few weeks for the kind, 59 year old gentleman who they'd tapped to replenish himself, or a few months for another donor (I was lucky enough to have 5, when half don't even get 1) to be screened and approved as a match. Not ideal. 

By the time it was done, it was March 1st. 

So my transplant, the thing that's brought about a completely new me (stem cell/bone marrow transplants are the only way you can change your blood type!) happened from the 28th of Feb to March 1st. Naturally, the last few years, I've been milking it, and asking for 2 presents (and 2 cakes) to celebrate my, technically, 2 rebirthdays. It's actually 3 if you count my first transplant (that happened in September 2011). 
This year, with the leapyear throwing another entire day in the middle, it's gonna be 4. 

So I'm gonna have 5 birthdays this year. Better get 5 gifts *hint hint mum*.,.

But this/these ones are the most special...

The second, worst day of my life

I had to live it... All. Over. Again.  

When I relapsed a year after my 1st transplant, my doctors were already pessimistic about my chances going into a second transplant. After I developed an allergy (that left me hallucinating in ICU for a few weeks) to the best immunosuppressive drug that's vital for transplant, they were seriously recommending palliative care as one of the options... 

That relapse was a slow process for me. My counts had started dropping in June, 2012, and for a long time, we weren't sure why. My bone marrow appeared almost normal. No other sings of disease or infection were there. My doctor was stumped. He thought it was a bone marrow failure, that my donors' stem cells couldn't produce cell in my bone marrow anymore. We were getting second opinions from everyone we could get our hands on as I slowly moved from 1 transfusion every now and then to 3 a week, plus injections to boost my white cells. We got 3 opinions from "world leading haematologists" in the US through mum's work. And they all said the same thing. 

Relapse. 

On the outside, I was in a state of denial... 

ANYTHING But That.

My parents were baying for answers. I was actually in some kind of shock, in a mode where I didn't really wanna know, just living life in emptiness as I waited for the balloon to burst. As I got tireder and tireder, as time between appointments got shorter and shorter and as I felt the palpitations of my straining heart grow stronger and stronger, an impending sense of doom came over me. I knew in my own heart that this was it. 

But I kept on doing normal things anyway. Going to uni, playing basketball, trying to ignore that little voice in the back of my mind that was growing stronger and stronger, in line with my body's slow deterioration. 

A biopsy in October confirmed it. It was happening. My chances, this time, less than 10%. 

And at that moment, everything I'd done til that moment fled my mind. My happy-go-lucky attitude, my focus on my health, this certainty I'd had after going through all this that I'd get through it... my composure. All gone. 

What Was All That For???

Why Now???

I'd done everything right... WHY ME, AGAIN???

I stayed that way for weeks. A cycle of going from shock, to feeling numb and feeling angry. 

But after a while... I took a step back and wondered, "What was all that accomplishing?" 

Nothing. 

Except making me feel worse. 

"What should I do instead?" 

When I asked myself that... The answer was clear. 

Prepare for that next step. And try my all to do anything to make it work. 

But unlike when I was diagnosed, I didn't wanna lose the anger. I made it work for me. 

I scoured the internet, my library, journals... looking for anything that could help me, anything that could be the answer. I started out looking for the real answer. As if this wasn't it... Probably the denial. I remember trying to convince my doctor I had somehow contracted Dengue fever, and that that was what was causing my low platelet counts... 

But when I got back on track, as I was looking through anything and everything that could help me... After weeks of using my newfound year of medical knowledge to try and understand the disease and find logical treatments or ideas that could illuminate one way to go, I started looking at the drugs they give for leukaemia usually... And if any could be used in me again. 

And that's when I found out about Azacitidine. 

I didn't just find it... I proposed a mechanism of action of its working post transplant to increase the immune effect bone marrow transplants work on, that my doctor couldn't refute. And that drug, after my second transplant, is probably the reason I'm still here today. 

I was extraordinarily lucky to get the drug in the first place. My doctor wrote in, using a loop-hole he found in one of my first biopsies to argue that I did qualify for it. Hell, I was extraordinarily lucky to get the option of having a second transplant in the first place!!

I'm extraordinarily lucky to even have been here. To have an amazing family who puts up with my crap, as well as my health. To have doctors who've helped me so much, medically, and as friends... nurses who are second mothers and fathers, a medical school that wants me to succeed and some special friends who make it all worthwhile. 

And I'm lucky to get to this point, where my relapse rate is less than 1%. 

Ok I got some pretty awesome news from a haematologist I saw last week =] The last time I saw him, I'd been told by my...
Posted by Nikhil Autar on Wednesday, 1 July 2015

Holy Shit!

I'm Cured!!!!!

I know I'm lucky to get here... But I don't always feel so lucky... In fact... the last year or so in particular... I've hardly felt that at all. 

I lost an eye, I nearly lost the other, my treatments got harder, while getting less and less effective, my cramps got worse... I developed a third cancer, I found out (recently) my nerve damage that's causing my daily, debilitating, cramping is likely to be permanent... 
There's not too much to cheer about... 

I'm doing everything I can. Often, I can't really do anything... I'm STILL GOING THROUGH THIS SHIT after 3 years!

And I'm not sure it'll ever end... 

I hate watching a basketball game, or even kids running down the street, knowing I can't do any of that. I hate that I can't go and do the normal, or even basic things that my friends cn. I hate that I can't work on the things I should be able to, or that I can't put my all into them. 

And though I keep taking that step back, and reminding myself that that doesn't have to limit me, that I can still do the one thing that matters; THINK and that my new normal can be better than the old me if I think about it that way, that doesn't stop the pain I know is coming, the struggle to do any menial task or the burden it puts on my family who deserve much more. 

It sucks. And contrary to outside looks... it does get to me.   

But I realised something the other day. Something I've realised a few times, and kept stored in my head, only to forget about it next time something goes down. It's this. 

"I was feeling really horrible; had minimal sleep (the cramps are keeping me up again), forgot to bring my creme to hospital, leaving my skin feeling crappy and overall, just feeling like i was trapped in this shitty body. But after joking around with a patient (he was doing a walking test, going back and forth over the length of the clinic... i asked him if he was lost) and the cleaners... i suddenly found a reason to smile again. 

Goes to show that you can be much happier if you focus on others rather than yourself smile emoticon
I'll remember that for next time!"

"You'll always have a second way of looking at things. When you come to some trouble, when you're not happy, when you're scared or when you're doubting yourself - if you can take a step back and question all those things - you'll be able to see that. 

I guess sometimes it takes more than just that to get back to you. Especially when you're in pain for so long. Especially when you're depressed.
When that happens, and you find something that helps you get out of it - you need to REMEMBER THAT. What causes it. Write it down. Tell others around you about that. And next time, if you find yourself feeling confronting the same thing, you'll get through. With much less pain.

These systems are what keep you happy. It's what can help you get out of deep, dark holes. It's what can help you succeed in life. It's what can keep you sane.

And I'll definitely remember that for next time."

And applying my own logic to myself... I guess the last thing I should talk about on this day is someone other than myself. 

These amazing 2 men who gave up a few days of their lives to give me a second chance at mine. 

I've talked about how bone marrow transplants - on the donors' end - really aren't as hard as people think. What with the non-invasive swabs or blood tests that allow you to get onto the donor registry, and (in the 1/400 chance you're called up) the peripheral stem cell collection procedure, which is pretty much a slightly longer blood plasma donation, it's easier by far than what the wider public believes. 

But without the efforts of people like these, I, and thousands, possibly hundreds of thousands of people, would never have gotten another chance at life. 

YOU could be one of those people! To find out how to sign up for your local bone marrow donor registry, and more about the procedure - click here!

And finally - thank you guys who are reading this.

It's been a long journey. But you've made it better. The chance to help others while often only being able to sit around at home is something I've been blessed with. And be sure... I'm not gonna stop, nor am I gonna waste this opportunity I have.

Anything you guys ever wanna talk about - I'm just a message away -- Details on the side of the page - or just message me here: www.facebook.com/musingsofamedstudentpatient