Thursday, August 29, 2013

Hallucinations

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Your mind is a powerful thing.

It's your personality, your spirit, it's every aspect on how you view the world.

It's you.

It's no surprise, therefore, that when your mind gets affected by something and you lose control of yourself, it is often a torturous, traumatic experience.

During my treatment, I had a brush with that kind of mental health. 

I developed an allergy to a drug I'd been taking for a long time for some reason or another that gave me PRES (Posterior Reversible Encephalopathy Syndrome) - a very rare, but luckily, reversible condition, that sends people down into a staggering path of seizures, altered personalities, nausea and hallucinations.

Those 2 weeks I was being treated for it 2 of the worst in my life. 

But looking back I am able to see past that and not let it affect me. It wasn't easy to do so. It took some time, but today I can look back and draw from my experience in a positive manner.

I hope what you're about to read can help others do the same.

The scariest part of my condition was definitely the hallucinations. 
How real your mind can make impossible situations seem and the weird sort of links you see in the world when you're out of your mind can be just plain frightening. But the fact that they are the projections of your inner soul - your inner person - allows yourself to see who you REALLY are deep inside. I was lucky enough to come out of it good...

But not everyone would be as lucky as me, or able to see their way past a mental illness and come out the other end like I had. And their trials aren't limited to extreme things like hallucinations. Things like trauma and depression people face on a day to day basis are even harder to see out of sometimes because it becomes a part of someone. Some of the things I experienced and saw really makes me sympathise with anyone who has to face that struggle every day of their life.

And unfortunately, millions of people do.

Here are a few of the most powerful, moving hallucinations I had. For anyone who's ever gone through anything similar to this or anyone who may be going through a severe issue such as this, I really hope that this helps you get past your experiences and encourage you to talk to someone about your fears and concerns (that someone can be me) and find a way to move past them.


Time travelling

You guys remember the whole Mayan Calender - "The world is gonna end!" - Armagedon sort of event that was predicted to happen on December 21 2012 right?

Well, I experienced it all a few days before you all... 

Let me explain.

During my time with PRES, I was obsessed with the idea of time. I don't know why but things like the clock and the time display on the computer terrified me. 
If I glanced at a clock face in that time, the hands would change directions every now and then, they'd sometimes grow a tail and even flip around, and twist and move in different directions.

One day, I was on my laptop. It was the 12/12/12 and approaching 12am, midnight. My mind in its state, shifted it to 21 though and as time ticked over - I entered Judgement Day 8 days before everyone else.

I was panicking - I knew about the whole Mayan Calendar thing and in my confused, delirious state, really thought that the world was going to end. I started clutching at the straps restraining me, struggling to sit up to look through a window at the sky that wasn't even there in the Intensive Care Unit, and see what was happening to the world.

Well, oddly enough nothing happened. Not even through the day. But I lived a full day - more than a week in advance - all in my head. I actually lived it - experienced everything from the taste of the breakfast muffin dad got me that morning to the feel of a fan cooling my face to even seeing and talking to visitors who never actually came - all in my head!

Even more amazing - I envisaged a whole day's worth of international cricket (a sport we Aussies love to watch) playing on the TV the whole day. Australia had a great days play so looking back at it now, it's made me realise how much pride I have for my country. I even watched a YouTube music video of a "newly released" song by Eminem, Kanye West and Hopsin all in my head. I looked it up a few months afterwards when I was thinking back to this particular hallucination and realised that I had, in the span of 3:45 minutes, made up A WHOLE SONG - chord progressions, beat, lyrics and all WITH music video to match in my head.

That in itself is amazing!

But the next day when I woke up and saw that it was actually the 14th of December - I was shocked. The whole time I was hallucinating, I didn't even know I was. I had lucid moments where I was myself  for a few minutes a day but I don't remember those. So naturally I panicked as I believed that I'd just travelled through time. I lashed out at doctors, nurses, my family - accusing them of making up my whole disease and forcing me through useless treatments, asking questions they couldn't answer like why the windows were open when there weren't any in the ICU anyway in my confusion.

It was my family who got me through it all - who grounded me every time - sometimes even playing along with hallucinations and withstanding the tempers and tantrums that came with them. What I was going through was hard enough - but I can't even imagine having to watch someone you love go through all that pain. My brother in particular had to focus on this AND his final years' exams too - how he managed to do as well as he did still astounds me! They kept me laughing, kept me as sane as possible - something I can never be grateful enough for.

Something that I now realise countless carers and supporters do for people with mental illnesses every day of their lives!


Kill me.

It started off a normal day. I had just started losing my hair again after chemotherapy actually and in my almost deranged state - was scared out my mind by visions of floating strands of hair entering my central line - an exaggeration of how germophobic I get when my immune system gets killed off from chemo.

In any case, my doctor came into the room and I had a sudden vision. The light shifted and it was as if all those hair particles were emitting from HIM and coming to almost attack me.

The scary thing was the sense of doom I got from it. I connected his presence with the reason for me being attacked and infected by all the bugs I was getting sick and I found myself shouting at him to get out of the room.

What I did next I can't even believe. I reached for my central line and was seriously contemplating pulling it out. It wouldn't be lethal if I had done it, but I had just been overwhelmed by my circumstance and had made the conclusion that the hairs were going to cause an infection and kill me.
I wanted out.

Nurses came running in and I was asking about euthanasia and if they could do it for me. To be asked that question by someone who only days before had been smiling and genuinely happy must've been terrifying - but as usual, they did their job well and grabbed the doctors. I suspect I was also put on suicide watch or something like that too. 

What I did later that night though horrifies me to this day.

I was suddenly pulled out of my reverie before I started sleeping and saw small chunks of hair entering my central line again.

I grabbed my mother's hair and screamed at her, "KILL ME NOW! BEFORE THEY DO!" I pointed at my line again, urging her to see the clogged up chunks of possibly lethal shavings running into my veins. 
"PLEASE!"

To be asked that by someone you love is horrifying. The way she managed to calm me down with the help of the nurses and remain smiling in front of me astounds me to this day. I can never thank her enough for all she's done for me - but that one night in particular stands out from the hundreds she spent running back and forth from home to hospital, 45 minutes away, cooking and preparing meals all the time and sleeping on a too-small couch in that dreary hospital room for months on end.

It made me really appreciate the support I had behind me and it made the horrifying experience just bearable for me. Her support, her courage, is why I can write this today without being affected by it.

And there will always be someone who can do that for you in your time of need - whether it be someone, like my amazing mother in my case, in your family, a friend or partner, me even (feel free to comment your own experiences anonymously below) or best of all - a professional. Do not feel ashamed or weak to do so. In truth, if you take a step back and ask yourself why you shouldn't talk about it - you'll see it's only an excuse to not get better and taking that first step and confiding in someone is actually the most courageous thing you can do.

Though the first two may seem otherwise, not all of my hallucinations were dreary, dark things with little hope. In fact, most, though scary or confusing at the time, are actually quite funny looking back at them now and there are a few that I as exalting, inspirational revelations rather than something to feel down about. Hopefully by reading about this one you can see that any issues you may have - any trials you may face in your future - can ALWAYS be seen in another, more positive way.


The Most Amazing Hour Of My Life

This one started not too long after the last one. 


A few days prior to this particular hallucination, I'd had an episode of cortical blindness - a weird kind of blindness where your mind refuses to register images that you see but you're still able to walk around without falling over things and are still otherwise aware of your environment  For some reason I was suffering from extremely blurred vision for the days after that too.  

It was 7:30pm on Sunday night - and my favorite show was about to come on - "Extreme Fishing Adventures with Robson Green." My elder cousin - a really good friend of mine - had come in to sit down and chat and I hadn't seen him in weeks so I was glad to have him there and Dad was there too - he wouldn't miss that show unless he absolutely had to!

But for some reason, I was getting a really weird vibe from them both. The way they'd look at each-other every now and then with solemn looks and then turn away when I caught them looking made me think something was afoot. And I was getting an odd feeling in my chest - a little tightening maybe - that was bugging me.

The episode began with the these song playing and it was like a veil being lifted away from my eyes for the first time in years. 
The blurriness, the weird flashes of light that kept coming up and annoying me as I tried to see things shifted in an instant and I could see perfectly again. Everything was well defined and clear as if a group of electricians had come in and with pit-stop-team efficiency changed my television to the most high-tech, advanced HD possible and left without me noticing.

I exclaimed "This is amazing!" and Dad and Manik, my cousin, looked over questioningly, with slight, almost knowing smiles on their faces.

"What's up?" asked Manik.

"I can see everything... better than I have before. The TV, all the posters in the room - I can see people's faces on the street!"

"That's good man," he said, calmly.

"Yeah, it's cool isn't it," said Dad.

I was a little confused at their lack of excitement at the sudden reversal of my symptoms, but the show that was on was so beatific I soon found myself entranced by it. One of my greatest hobbies in life - fishing - was being displayed in the most perfect way possible. The host, Robson Green was sitting at a spot not too dissimilar to one of my favourite places of all time, a little lake surrounded by trees and sand and wading out to mid-ankle level and casting at fish he could see  and - more importantly - catching them too.

My conversation with my cousin was one of the funniest and one of the best I'd had ever, as we relived all our old experiences of playing basketball together, of holidays we'd gone on years in the past and laced it with exaggerated, mostly made up references of our conquests and the prowess we displayed in dealing with the fairer sex.

As the show ended, everything became even more surreal than before. 

Breathing was getting harder - but not painfully so - just requiring a little more effort than usual.

"How are you feeling," asked Dad, concern showing clearly on his face.

"I dunno but I'm feeling a little slow I guess, but it's probably me just a little tired. How good was that show?"

"Yeah it was good wasn't it," he agreed, "Your timer's getting low, might wanna buzz the nurse in soon."

Sure enough, my medication pump started beeping and in a few minutes the nurse came in, checked my medications and put on the 5 minute, post medication flush, nodding at my father and Manik as she left the room.
I gazed at them questioningly but was distracted again by the show.

It was as if everything had shifted. Robson - the host of the show - talked and it was as if he was talking directly to me.

"The end is near. And it will go off with a bang." he pronounced, gently caressing a little trout he'd just pulled in. "Don't worry - don't be afraid - it won't be hard, in fact, it will be beautiful. I present to you Extreme Fishing, the Movie."

A sense of finality came over me. But it was peaceful - soothed by the smiles of my father and cousin and made happy by the montage of scenes of his upcoming movie playing in the background.

I was starting to get a little scared and glanced anxiously at the timer on the pump as it ticked down closer to 0.

I thought I was going to die.

"Don't worry, Nikhil," assured Dad. "It'll all be over soon. And it won't hurt"
Robson's voice called out, breaking the little silence, "It will not be sad, it'll be over quickly. And it's coming soon."

"Dad, what's happening? Why are you guys acting so weird."

The pump started beeping.

"Don't worry, Nikhil. Press the silence button. Trust me - you'll be fine."

I glanced over him and at Manik tentatively. I looked at my pump again and the time was out. I suddenly realised they must've rigged the "Silence Buzzer" button to release a medication that would end it all peacefully.

I glanced at them, tearing up a little. But they glanced back, solemn looks on their faces, and nodded for me to continue.

I looked back to the button and slowly extended my finger outward. It would all be over soon. I could feel it. But I wasn't scared. 
I trusted them and knew they'd know best of what was to come. Though I was shaking, tears streaming down my face, I slowly found it in myself to extend that finger and closed my eyes as I pressed the button, leaving us in silence.

I waited - knowing it would take a while for the medication to take effect.

After a few minutes, however, I opened my eyes, and blinked a few times. 

Nothing had happened. I turned my head back toward my cousin and father to my right and saw them beaming at me - grins stretched across their faces and eyes shining with the making of tears.

"What happened?" asked Dad, struggling to hold back a smile.

"I don't know... Why did you do that to me? I was so scared!"

"Why do you think you're going to die! Son, you've made it. You're fine!" he said, choking back a sob.

I sit here now, crying in joy as I write this, and am still astounded by that one moment of pure joy, of pure ecstasy that my mind had made me experience.

Can you imagine the utter joy that experience brings me?

It let me know that deep down, in the core fibres of my being, my inner soul - I was so sure, so CERTAIN I would be fine, that I would be happy - despite all my struggles and pain, despite being told I had only a 10 - 20% of surviving twice and despite all the doubts I had along my journey. That I could envision something so uplifting, so motivating, so beautiful in a time where I was at the lowest in my life amazes me. And I thank my experiences, the attitude I'd developed with the help of my family, doctors, nurses and friends and myself every day for allowing me to experience such a thing in my life.

*****

The mind is a power thing.

And when something about it goes wrong, it can be a harrowing, life changing experience.

I am lucky enough to be able to have a healthy mind now (though I'm sure my brother would dispute this claim) and am so much more aware and sympathetic of the struggles people face on a daily basis in their battle with mental illnesses.

It affects a lot of us - depression will hit 1/2 people during their lifetime, dementia and Alzheimer's are on the rise along with many other mental disorders and people face trauma and struggle to deal with pain every day of their lives.

I hope that my story of my own experience can help you to see that it isn't something you should be ashamed about, or something that has to take you down. Give it time, do talk to someone about your problems - if possible a professional - and I hope that you do get better.


I know that each and every one of you can have all the happiness in the world.

All you've gotta do is give it some time and you'll realise that YOU have the power to control how you feel. 

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 =]

Thursday, August 22, 2013

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 =]

Tuesday, August 20, 2013

Chronic/Long Term Diseases.

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For the last 3 or 4 months, I've been having a weird sort of smell at the back of my mouth/nose. It's hard to describe - like a mix of blood (though not as metallic) with burnt rubber and it had a very salty sort of tinge to it. Occasionally had weird outbursts of flashes of colours in my side-vision which came with some nausea too - but only once a week or so. I also had a runny nose that kept persisting despite having no real infection present on swabs and in bloods and stuff like that. What was odd though was that I was getting large chunks of solid mucus coming out in the later months. I thought it was normal though and moved on.

I told the doctors about it and they were confused and sorta pushed it aside as if it wasn't a concern. And I guess I can see why - I was going through infections, pain and a transplant at the time so it wasn't on the list of priorities I guess.

So it kept going on for the next few months. And we didn't really touch on it - I occasionally mentioned it to my specialist in our weekly appointments but never really got much of a response. We suspected it was because of a medication I was on (azacitidine) which is like a mini-chemo drug (de-methylating agent - ask if you're interested it's relatively new in post transplants) and they thought the taste changes were because of that. It was showing good results so we persisted with it and blamed the weird symptoms on that, and I thought of it as a good thing in a way - a little price I had to pay for my overall health. I could deal with that.

But then over the last few days, it got worse. I'd had a nosebleed on Friday - common as the azacitidine brings down my blood cell counts - including platelets  which are responsible for stopping bleeding and so I hadn't blown my nose/taken out any large chunks for a few days.

For some reason though, I was getting a stronger smell/taste (I hadn't tasted food properly for 3 months by now by the way), more headaches and more nausea spells and it got to a point where I was having these episodes every 1 or 2 hours.

I read up on it a bit - and had a look into sinus blockages.

It had to be it! I hadn't blown my nose in 4 days and so all that mucus and congestion must have built up - making my symptoms worse. The large chunks of solid chunks of mucus was mucus that was stuck in my cavity for so long that it dried up - and that old, dirty mucus was why I was getting altered  smell/taste too! When I told my doctor next day - he was bemused for a while, and then he said, "Hmm, seems reasonable actually," and bam! 
A bit of nasal irrigation, antibiotics and good old-fashioned steaming and I'm feeling clearer and better than I have in months.

It's only a sinus issue. It only had small side effects. But it was something that made me suffer unnecessarily. The thing is... it could've been 10x worse. And you'll see later that one little assumption I made nearly cost me my LIFE.

What can we learn from this?

FOR DOCTORS:


Especially with patients with long term problems, never presume signs are irrelevant or inconsequential - even if there are bigger things to worry about. I couldn't taste food properly for months and that was annoying enough but I suffered with random episodes of nausea and those other things as well - especially in the last few days - unnecessarily.

With "chronic" or long term symptoms, like the taste changes and smell I guess in this case - understand that patients will just learn to get along with things. And it's alright when it's something like a sinus problem. But remember - I was immunosuppressed or less able to fight of infections - so it becomes 10x more deadly too if I were to get a worse infection from the clogging (it's usually caused by infections already in the nasal cavity or inflammation there by the way). 

But if it were shortness of breath, or chest pain, or chronic heart or kidney  disease, which so many patients have and live with, then it could be 10x worse if you didn't know or note its progression! Your patient could have a heart attack or stroke or worse!

So ask them about the old symptoms they may have had weeks before

Because there is a good chance they may still be experiencing them - don't assume it's resolved unless the expressly tell you it has and don't think that it's only a little thing that they have to learn to live with when there may be remedies out there - not all have to be drugs - that may help. 

Remember too that sometimes you will forget things! So encourage your patients to tell them EVERYTHING about themselves and especially with long term patients - write everything down so you DO remember - and ask them about problems that you may have think had been resolved (they can come back!) - even if it means flicking back to a records from a few weeks ago - or things they haven't brought up in a while - because they may, like me, and like so many patients with chronic diseases, have learnt to live with it (I bet many of your chronic patients are frustrated too when you don't believe them or take action on symptoms that are destroying their lives). 

And that could just end up being the thing that stops them from living.


PATIENTS:

Tell the doctors EVERYTHING EVERYTIME. Don't think it's annoying them. If you keep persisting they will realise that it's annoying you and that the doctor should try and intervene somehow, if he can - whether it be giving you more pain medications or blood thinners for your bruising or referring you to a sleep specialist for your insomnia or referring you to a psychiatrist if you're scared of what your future treatment means to you. If they don't believe you, or dismiss anything that's affecting you, sometimes you have to show them (I literally had to video my cramps, and then have some debilitating ones in front of him, after emailing him 10x about them, often using that word, before he acknowledged it.  You know how he described them? Debilitating.). Sometimes you have to plead for it to be treated. It sucks.

Remember - doctors are human. Sometimes they can be dismissive, sometimes crass and crude, but often they just forget

This happened once with one of my medications too - bactrium - a prophylactic (prevention) medication against pneumocystitis after bone marrow transplants. I had been taking it for a while - but through some miscommunication I thought I had to stop it. Apparently he meant another drug though and I was left vulnerable to the dangerous disease. So I stopped taking it for around a month and when I began my azacitidine treatment - I developed a chest infection and was treated by doctors at another hospital in emergency. They wondered why I wasn't on bactrium and only after a bit of digging up did they find out what had happened.

Luckily I didn't have the deadly pneumonia - one that literally kills 1/3 people who get it during transplants! - but something else. But it was a close call that could've been saved if I'd simply asked my doctor to confirm it or checked with him whether I should be recommencing that drug. I hadn't as I'd overlooked it - but others may not because they think it's annoying the doctor or that the doctor's looking after it. I feel that way sometimes too. And the doctor should've been checking my medications every appointment.
Sometimes we both make mistakes! 

So remember - always be open to your doctors and don't be afraid to ask questions.

It's your health. 

It's important.


Wednesday, August 14, 2013

Humour in Hospital #2 - The Ups and Downs of Hospitals

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I guess I have a lot of experience on how it feels to be a patient. But, if you've read my previous posts about how I managed to remain happy and positive despite my illness, you may just realise that I view the suffering of my family - my primary carers - as being much worse than my own. 

I mean, I could go through all the hard things associated with cancer treatment with a smile on my face, knowing that I could still be happy, and that someday all this will be left behind in my past. 

But it'd be a completely different story if that was someone I knew closely who was lying there on that bed for months on end. The pain, the angst, the worry and the fact that I couldn't do much about it seems tenfold worse than anything I went through in my eyes. 

What amazed me about my family most was how they managed to always stay happy and cheerful around me. 

The journey up those lifts to my ward every day, worrying about whether a fever had settled or not yet, wondering why my blood-counts weren't picking up, all the while juggling bundles of food, blankets and clothing was hard enough as it was - but to do that and still manage to put on a smile between the lift doors and my room's - seemed extraordinary. 

But, like me and my hilarious encounter with the MaryJohnson, funny little things kept them sane on those lonely, empty lifts. 


I remember, only a few days after starting my treatment, a little kid, probably the son of another patient, who used to run around the corridors of the ward every few days. One day - dad invited him to peer through my window and wave. He was wearing a superman costume - with Clark Kent glasses to match. It was crazy, it was weird - but that smile as he waved his chubby hands was more infectious than anything I'd picked up while in hospital.
A few days later, dad came in smiling a little more than usual. 
 
"What's up?" 

"I met Superman again today," he began, chuckling as he sank into the couch by my bed.
"I was coming up the lifts today and it opened on level four instead of five. But no-one was coming in. I looked down and there he was, smiling at me, the cheeky bugger."
"So I looked at him, up and down and he looked back at me - still smiling. I asked him, 'You pressed the button didn't ya?' And he just stood there, hands on hip and said 'Nup." And ran away as the door closed."

It was ridiculous, it was stupid. But damn - just thinking about that smiling kid made me crack a smile. 

More importantly, it made Dad smile. 



My stem cell transplant, almost 2 years back now, meant a transfer to a new hospital - from Liverpool where I had my first few rounds of chemo to St Vincent's - in the city. It was scary. Not only because it was dangerous, also because I was getting it in a new place - with new nurses and new doctors and, more scarily, new complications. 

But it wasn't 100% new. I was the first person to stay in my first room in a new ward in Liverpool hospital - so I got a nicely furnished, freshly painted and, more importantly, well decked out room with a new, flat-screen TV. What I was stuck with now for at least a month though was a smaller, more cramped room with a tiny box of a television that didn't even show half the channels. 

Mum and dad begged the head nurse and ward technician to allow us to bring in our own TV from home. But we were denied - some technicality about having to get approval by a government agency before allowing electronics in hospital rooms (no matter how safe the instrument may be). They asked around, tried appealing to the electrical department of the hospital and pulled every string they could - but all to no avail. 

One night, the night before I was to start radiation prior to the transplant, Dad had had enough. I was getting deadly bored in that room, and as it was my to be my last trip out of hospital for at least a month, so Dad stashed away our huge 40 inch TV into the boot and drove to St Vincent's at 9:30 pm while I wasn't looking. 

I looked on in amazement and burst out laughing as he pulled the huge thing out of the boot and tucked it - somehow - under his arm. Ushering me ahead, urging me to hush the whole while, we walked over to the front entrance, not even blinking as we passed the curious security guard who let buzzed us through the now closed glass doors.

We waited patiently by the lift as the levels blinked down towards the ground floor excruciatingly slowly, only just managing to hold in our laughter until after the lift doors shut. Trying to compose myself and hold back the laughter as the lift trundled up towards ward 9 south was one of the hardest things I'd ever done. The short walk to my bedroom , dad sweating profusely as he held the 40kilogram TV while maintaining a straight face must have been at least ten times harder. 

That thirty second ride with Dad cracking up - to the point where he almost dropped the damn thing on his feet on two occasions - and me struggling to smother a giggle that just wouldn't stop was longer than any biopsy, any training session, any boring lecture in my life. And, surprisingly, it happened to be on that usually depressing journey to my cell. 

And it transformed this hospital room


Into this



 Being comfortable really helps making it that much more bearable. 

A talk I did in front of THE LIVERPOOL FOOTBALL CLUB about this very story!

And now - to the tale of the mysterious butter lift. Held in wide regard as a myth by those who know of it, it remains lost to this day. Unbeknownst previously to this rendition of the tale, though, is the fact that it does indeed exist. 

'Twas said that in the dead of winter of the legendary year of 2011, sometime before his kinsmen's second battle with the fierce foe of Chemotherapius, that Nirav, the Brother of the Afflicted, had buried a secret treasure - unbeknownst to his enemies, the evil Janitor├Ęs, somewhere in the depths of their hideout.  

'Twas a stick of the most divine cream purloined by the Spirits, the most sumptuous, nourishing supplement plucked from the bosom of Meadow Lea herself and stolen by the knave in a daring raid of their fortunes.

'Tis said, that this marvelous delight, this sweet nectar, this most perfect stick of butter was sequestered somewhere in the vast reaches of a particular lift in the Infirmiry that is Liverpool Hospital. 

The charlatan, Nirav, did himself tell me of this curious treasure but a few morns ago, and eagerly I trekked out in search of this amazing treasure which he insisted still remains unclaimed to this day. Together with a swathe of young scallywags, I embarked on a journey to find this mysterious rune. After an eternity of scouring the various lifts of the hospital, I chanced upon a glimmer of gold and, to my utter surprise, beheld the legendary stick of butter that had been lost years ago.

It still remains, to this day, hidden in the depths of the Lifts of Liverpool Hospital, as fresh and pure as the day it was packaged, preserved and plundered - waiting to be found by those daring enough to try. 


Will you be the one to find it?



 ***

Whenever I'd think about that minute my family spent alone in the lifts, the sheer stillness and time spent doing nothing but thinking about my struggle seems daunting. I'd imagine them standing there, brooding about my struggle - maybe even crying at times. But these little tales with their associated  quips, these seemingly trivial occurrences, these outstandingly odd events just make it seem that little bit more bearable. 

And if anyone manages to find that pack of butter - leave a picture of it in its previous abode and I'll shout you a Subway footlong if it's still there when I have a look... 

And it is still there (2 years on). I Checked.


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