Christmas In Hospital. It's not great, but thank God for some people who make it better!

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It's a stark reality that many face over the next few weeks, while we get to celebrate. 2/3 of the last Christmas/New Years, I was in hospital. 

It sucked. I could see the celebration, the festive spirit, the joy of others on TV, Facebook, YouTube; everywhere. I felt like an outsider, sitting on the shores of a lake of joy, festivity and love, unable to drink it in, as everyone else drank and frolicked in its clear waters with ease. 

This period sucks for many who can't celebrate it. Even if we're not physically incapacitated... we feel isolated... an ungrateful soul because we're not as caught up in the celebration so much as recovering from what's often the worst periods of our life. The family gatherings and festivities, a thing to look forward to for most, become something to dread for those who have to explain their circumstance over and over, or else exposed to distant family and friends and their judgements of us for the first time in a long time. 

It's something a lot of us cancer survivors, and something that many sufferers of depression feel...

But there are some things that make it better.  

I talked about how I dealt with the tough "festive season" of Christmas and New Years on this Cancer Council Webinar (just enter your email and you can watch it for free --> http://www.webcasts.com.au/ccnsw261114/). It wasn't easy... but eventually, I took a step back and realised what was stopping me from having fun was the fear of judgement and others' thoughts about me. Taking that step back allowed me to see that that worry was coming from me, and all it was doing was stopping me from being happy with myself, and that's something that's helped me become more confident and happy with myself, to this day. 
I think it's awesome that the Cancer Council cares not only for the research, and treatment of patients, but also for their wellbeing. Indeed, I believe that contributes equally to a patient's health as their treatment does!

But the fact that I was missing out on some of the best bits of the year... that was harder to get past. But after a while, and after taking a step back and looking at things from another perspective, I realised that in the end, this was all happening to allow me to enjoy many more Christmases and other occasions in the future. So why worry?

That in itself was something to celebrate, I realised. 

But it also helped that I had some amazing nurses, doctors and family to help me feel like I wasn't missing out at all. 

And you know what, when I went in to visit my nurses and doctors, my second mothers and fathers, like every other year, they were doing their best to make sure those under their care didn't feel like they were missing out. 

And this year - they'd outdone themselves! 

They won the best decorated ward in Liverpool Hospital this year. And with this amazing Frozen themed Christmas decorations, I don't see why they wouldn't win the best Christmas decorations in the STATE award. 

 The Snowman from Frozen! Made entirely of foam cups!

 One of my favourite ladies - who you may know as Mary Johnson (click here to read that story) posing with this hot devil.

 Christmas trees in hospital? Say what???

 I saw her wearing this hair-pin and couldn't resist.

A little photobooth they created for patients, staff and their families.

They weren't the only ones who brightened up the mood. I remember every time I was in hospital during the tough times, I wanted to go out and see the world. I love Christmas. It's a time where everyone gets together and everyone seems happy! 

What I loved most were the lights. And at the end of 2012/13, when I, and my family, were going through the worst period of my treatment, where I was having seizures, and my mind was plagued with very real hallucinations, I used to LOVE going out, every time I managed to get gate-leave from my doctors, to see this amazing light and music display that was outside 2 homes in a Suburb, not too far from home and the Hospital. 

I don't have the video just yet - but it's on again this year, and by this time tomorrow, I'll guarantee you I'll have it up!

 

Why Doctors, and why You, NEED to care about others.

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The first day of med school was one of the most exciting days of my life. Not only because I was following my dream, to live a life where I could help people, but because I'd be meeting so many others who wanted to do the exact same thing. 

But as I got to know my classmates, I was surprised. I mean all of them really did care. ALL of them were passionate, all of them, at some level, wanted to make a difference and help people. That was apparent to me after only a few days.

But I've noticed over the years, as I've met more and more med students and junior doctors, as I've watched friends progress further down the path of becoming a doctor, that they lose that passion over time.

I'm not sure if it's cause of all the science and learning they gotta do, if it's the fact that they're at the bottom of the heirachy and feeling ignored or insignificant, or if over time, they've become desensitized to it all but for some reason - they've lost the drive and the passion they originally had. It's as if they've lost their faith in their patients and the system. I can almost see them lose their confidence in their ability to make a real, meaningful difference as they see more and more suffering, get battered again and again with assessments and learn more and more about how big the problems in the world really are.

And that trend, it's true for all doctors. Today, 58% of us have lost our enthusiasm for medicine in the last 5 years, 87% of us have lower morale and 40 - 50% of us would choose to go down another career path if we could do it all again. We've got the highest rates of depression, the second highest rates of suicide, and the highest rates of alcohol abuse of any profession, despite us knowing better for the latter.

 

Time to Care; a great book by a great doctor - one I reckon anyone in Healthcare NEEDS to read - click here to get a copy

 

Being a doctor isn't as great as it's notched out to be, most of us would say if you asked us...

We hate our jobs.

But at the same time... we doctors, nurses, carers, we still have huge power to change people's lives.
I mean, the placebo effect is a very real thing that improves people's outcomes in disease so drastically, it has to be controlled for any experimental drug to be approved for use.

I know for me, it was my doctor's words, "that the good news is you're 17 and you have leukaemia", and his medical team's actions that got me to see that my 10-20% chance of living, was just that - a chance.

Our words, our actions, and our care makes a HUGE difference to people's lives.  

And you know what, it's not just that we should play a bigger part in our patient's lives, we have to. 

Because it's not just helping them, and improving their outcomes, their lives, but also ours.

And, as those remarkable figures and stats above made abundantly clear, that's something we NEED to do. Not just doctors, or nurses or anyone in healthcare, by the way, but all of us, no matter what our profession.  

Now, many of you may be thinking, I just don't have the time to go that extra mile to care for someone. 

"I don't have the time, the resources!"

"I don't get paid, or thanked enough for this shit!"

But first of all, in most cases, it's not an extra mile at all. 

I can personally tell you, the little things, telling someone their medications are on their way, holding their hand, nodding and actually listening as they're telling you how and why their treatment sucks, personally saying you're sorry for running behind schedule and will get to you soon, can make someone's shitty day in hospital. But even if it does take that "extra mile" of filling in a form for someone's work or insurance company explaining their circumstances and lack of productivity, walking down with them to a biopsy or sitting by them as they start a new therapy, or personally writing a letter to a medical board saying why that 17 year old patient should get to sit his medical board exams, you should do it.

In fact, you have to. 

Because chances are, you're not enjoying every day at the office. 

You are, or you will be wondering, "Why am I even doing this?" at some point in your career.

But when you do, if you can channel WHY you got into this in the first place... if you can go into work every day knowing, and relishing the chance to be that person who's responsible for someone not being scared as they're being rushed into surgery, or why someone's decided to keep going to therapy to kick the addiction that's holding them back from living well, or why someone's made the decision to keep going on in life - you'll stop seeing your job and measuring your life in shitty, thankless, 12 hour shifts and you'll start going into work, every day, excited, ready and thinking, 

"My very presence here could change someone's life..."

And that's HUGE.

Now so far, it seems I've been talking only about doctors. 

But this doesn't just apply to them. It applies to anyone working in healthcare, anyone in any other profession really. It doesn't matter if you're only studying, if you're coming up the ranks or if you're nearing the end of your career; anyone who's reading this can make their life meaningful by making their work, and their life mean something...

Because if you can relish the fact and go into work everyday thinking that you, as a teacher, can shape the future of your kids' lives, of an entire generation maybe, or that you, as an engineer, are designing systems that makes people's lives easier, or that you as a public servant, can ease the frustration of someone who's called 15 different departments, looking for the right person to talk to, you'll stop hating what you do for half the waking hours in your life, and you'll ENJOY doing it.

I'm not saying every part of life is gonna be motivating and inspiring, I mean, the week before exams, I, everyone really, spends half their time thinking, "Why the hell did I even sign up for this?!?"

There will be days, or tasks in the office that'll seem pointless, meaningless, mind-numbingly boring. There will be long weeks of seemingly constant preparation and study...

But if you apply this mentality, and look in the big picture; at how what you're learning will help you get to where you want in the future, at the fact that though some days are boring, there are those moments you get to help someone that make it all worthwhile - you'll do those things with at least half a smile on your face...

Hell - you may even learn to love those bits too.

And even if you think that what you're doing has no purpose, no value, no bearing on someone's life, then remember this question that Patch Adams, the world's first clown doctor, (one of Robbie Williams most famous roles was playing him in the movie, Patch Adams), put to me and a bunch of other medical students.

"Do you stop being a doctor when you leave the hospital?" 

Does your impact and ability to help others and change lives hang on what you're doing with your life?

Just a few small friendly chats, a few random kind gestures, a donation to an effective charity or a chat to an old friend or family member who you haven't seen in a while, can brighten someone's day.

Indeed, there are many stories of people out there on the verge of taking their life who decided not to just because a stranger smiled at them. I know a few times, while I was going through some dark times... a few kind gestures stopped me from doing so too...

But you don't need to change someone's life - just knowing you've made someone's day that much better will make your life much more meaningful.  

And these things don't have to be huge. You don't need to change your profession or give away all you've got to do it. It's easy. 

I remember one day, I was waiting in line at the checkout at my local groceries store. An elderly lady was bagging groceries, her arms lethargic, her expression utterly disinterested; her every action speaking volumes of her complete and utter boredom.

Her disgruntlement became more apparent as it came closer to my turn.

So when it was my turn, I pulled out this leafy, flowery, lettuce and held it out, saying "This is for you darling."

Her pent up frustration burst forth, in the form of open laughter, and she pointed at me, smiling, and said

"That just made my night!"

And you know what? Her smile made mine.   

Making the decision to live your life in a way where you also help others doesn't just lead to others feeling better. It'll make you life better too.

What better way is there of being happy yourself than making others happy?

That feeling of putting a smile on someone's face, unlike money, fame, power or women, can never be taken away from you. It can never seem hollow or worthless. It'll always stay will you and give your life purpose.

And you know what - you NEED to do it.

If youwanna learn more about how you can do that - without any loss on your part -click here to find out how!

The blog's Facebook Page: www.facebook.com/musingsofamedstudentpatient

Cancer Doesn't Limit Me. Extracorporeal Photopheresis - How it works and how I'm gonna deal with it.

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I'm starting a new therapy soon, called "extracorporeal photopheresis", where they take huge amounts of my blood and expose it to UV light. It's being done to to treat my Graft Versus Host Disease, a side effect of my stem cell donor's cells being transplanted into me (caused by his immune system, which was put into me, thinking my skin, organs and body are foreign), which is why my skin is so scarred and I have slightly abnormal organ functioning.

It's shown remarkable results. Nearly every patient with Graft Versus Host Disease (GVHD), be it acute or chronic, has shown not just improvement, but complete remission of skin hardening and scarring. It has good rates of resolving other organs affected by GVHD too, and the treatment itself has minimal side effects. 

But it still sucks. 

Mainly 'cause I've had to have a catheter put into me. A plastic line, inserted into my jugular vein by tunneling through my chest, with 2 access points, or "pumps" hanging out. And that in itself has already made me miss so many things. 

An opportunity to help raise awareness about the importance and the impact of Youth Cancer on national TV, by driving a Ferrari (!) is just the tip of the iceberg. Luckily there were others to take my place, but I still missed out on being in a Ferrari Goddamnit!

The fact that I'll be stuck in hospital, 5 hours at a time, two, or three days a week for the next 4 - 6 months, forcing me to maybe miss another year of medical school (at the very least, it'll make it even harder to complete), and that I won't being allowed out in the sun for almost the entire summer due to the exposure to UV light only makes it worse. 

The fact that I missed out on attending the World Cancer Congress, where 8,000 leading researchers, doctors and health charity and organisations were going to discuss the latest developments in cancer research around the world is tormenting me. I was gonna suggest novel ways of treating cancers and get in touch with pharmaceutical companies and reps to make developing and accessing treatments more efficient (which is what I'm writing about in my book), but because of this whole thing, I can't!

But the thing that gets me most, is that, yet again, I have to start all over again.

The whole year of exercise and work put into me getting back to my old self... all poured down the drain. 

You'd think I'd be used to it now. I mean it's happened so many times, right?

But every time it happens... it feels as if I'm being worn down, and each time it happens, I'm that much closer to giving up.

Despite me having such great support, despite my doctors' assurances that I can still do some things, despite me having gone through this so many times before, I, like every other cancer patient, HATE that this thing STILL affects me SO. DAMN. MUCH.

It feels like I'll never get back to my old self.

It feels like it'll never end...

And for so many... it never does. 

But in the end, when I take a step back and think about it... I still know that I have a choice in all this. 

I still know that though this sucks... I wouldn't be getting this if they didn't think it'd help. 
And when I take that step back and look at the big picture; the fact that this treatment may just stop my steroids, my cramping and the constant itching in my skin... I realise that in truth, I should be celebrating this. 

When I look at why I'm most put down by everything cancer's done to me; that these constant treatments and these side effects are stopping me from being the old me... I get angry. 

Because though I'm sick of the effects cancer has on my life... I'm sicker of the fact that I keep making myself feel bad because of it. 

I REFUSE to lament that I'm limited to a "new normal" after cancer. Because the ill effects of cancer, they don't define me... they shouldn't make me detest myself...

The fact that I still manage to function, that I still manage to find reasons to smile despite all this, and that somehow, despite all this, I'm STILL able to learn from this should be something to PROUD of.

Too often we cancer patients, we trauma and depression victims and we who have "missed out" on our dreams are told to accept our "new normal". As if what's happened, limits us.

But though we may have had much taken away from us... we can still be us, we can still be happy, and we can still GROW despite it all. 

And I'm gonna do that.

Yeah, this, and other treatments, may physically stop me from doing things in the future.

But it won't stop me from being me. 

Indeed, when I think about it, this may just be the golden opportunity, the extra few hours in my day that'll allow me to focus on other, more important things. 

Writing my books. 
Learning more about cancer, depression and global inequity that I may help more people in the long run.
And just being happy for being me, instead of what I can do.  

I'm gonna make the most of this. And I hope this helps you make the most of yourselves too...


**********************************************************************************
This bit's for patients or medical students, or those interested in this treatment I'm going through and learning more about extracorporeal photopheresis. 

What is Extracorporeal Photopheresis? And how does it work?


Well, basically what happens is they take blood out of your body (hence "extra" - or out of, "corporeal" body) and put it through a machine that exposes the blood to UV light (hence photopheresis - "photo" being the UV light and "esis" being blood put through a machine or filter). 

They need good access to some large veins to get a lot of blood through the machine and gain maximum benefits from the therapy, which is why they usually make sure people have VasCaths or other catheters in to ensure access to veins before doing it. Though some people have good enough veins to do it without it, often, due to the sheer number of times they need to access it, they start to fail half-way through, and the tunneled (under the skin) Vascath ends up being the less painful, less intrusive option (I've been told by doctors and nurses that after the first week or so, it's really not that restrictive - which I hope turns out to be true).

The whole process works by killing off T-cells, a type of immune cell which finds things that may endanger the body and attacks them, and activates the immune system, that have been activated and are on the attack or that are abnormal.  
These cells are responsible for graft versus host disease, and it occurs because the donor's immune system (their blood stem cells produce white cells which comprise a huge part of the immune system) is slightly different to your own cells, and hence the T-cells attack your body thinking it's a foreign particle of some kind, even though it's not. 

UV light, in combination with psoralen (8-mop or methoxypsoralen), a medication which sensitizes your cells to UV light, has been shown to kill mainly activated or abnormal T cells. The ones that are attacking you or causing you problem. 

The blood from your entire body doesn't pass through the UV-light machine though. It'd be very hard to ensure it all does. 
So there must be a systemic mechanism of its working here too - the weird T-cells aren't just all killed off, the treatment has to somehow cause the stopping of the production, or else the killing off of the cells causing the graft versus host disease. 

And though it's not set in stone, or observable right now, this is how we think it works (remember, there's a disclaimer on the side of this here for a reason! Always ask your doctors if something is right for you!)

The T-cells that are "killed off" by UV light induce apoptosis, or self destruction, of the cell. And when these dying T cells reenter the body, they are taken up by macrophages and dendrites and other "antigen-presenting" or immune system stimulating cells that likely cause the other T-cells and B-Cells (CD4 and CD8 T cells), those responsible for furthering immune system responses and forming long term memory  in our immune system, to form to kill off the GVHD causing immune cells. This is likely combined with other mechanisms too. 

So that's how it works. 

How effective is it? 

In patients who have failed steroid and other immunosuppressing therapies in reducing chronic GVHD, ECP was remarkably effective. Rates of 80% - 100% cessation of skin GVHD are noted. With those with other forms of GVHD, like liver, gut and eye GVHD, high rates (70% and up) were noted in those who started it early after GVHD had set in (about half a year after it had started). However, lower rates of success in other organs were seen in those started later (1.5years median), and lung GVHD seems to have low rates of response to it in one study, though others suggest a decent rate.
These studies were done on those with severe, uncontrollable chronic GVHD, might I add, so success rates may be slightly better. 

And many of the studies done on this are rudimentary. There are different protocols with different measures of effectiveness. But the best sources for this (the ones I got my data from) are below:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766348/
http://www.ncbi.nlm.nih.gov/pubmed/25025011

So what does it involve for the patient?

Well, first off, there are many protocols around the world for this, as stated above, and so the length and time involved varies. 

In my case, I'll end up getting 25 treatments of this, usually 2 per week (so around 3 - 4 months), plus any extra time I may need to show full response. I know at MD Andrerson, one of the world's largest blood cancer centres, that they usually continue treatment for 6 months.

In most cases, it takes about 4 - 6 treatments for the effects to start showing.

Before you start, you put in the VasCath or other means of venous access. As I said above, you can avoid this, but it's not recommended. 

Each actual treatment will take about 3 - 4 hours on the machine. It is a long time, and the machine can be a little noisy, and there may be small side effects such as a mild fever, slightly lowered blood pressure or cramping, but these usually die down after the first few treatments. Blood will be taken from your VasCath and pushed through the machine, and pumped back into you simultaneously. I'll update this while I'm having it to let you know any other thigns you may feel. 

And after it, because you take a medication called psoralen, which sensitizes your body to UV light, you're required to stay out of the sun (or wear large covering clothing) and to wear sunglasses for 24 hours after each treatment (the glasses, they recommend, to do it inside) to protect you from burning and lasting eye damage. 

So if you see me wearing this - you'll know why. 

But if you don't, don't worry.

What kind of ninja would I be if you did see me?

My experiences of it - 35 treatments in!

So I've had a lot of treatments now! I'm just updating this. How has the overall treatment worked? 

Well! It's no miracle "overnight" cure - but when I started, the skin around my joints had started to stiffen up and become inelastic. This changed that, and now, I can move them freely again (if it wasn't for a few random, open wounds that just started up for some reason). My skin is still scarred, as you may have gathered if you follow the Facebook Page for this blog  but it's less scarred over my body, and it is starting to reduce in severity, slowly. 

35 treatments took around half a year for me. The first 25 - they happened weekly, with 2 a week. But then it got spaced out to fortnightly/monthly. There was an issue for the funding for me in my nation (Australia) - after 25 of the treatments, you only get 2 treatments monthly from then on. In other nations, they like to "wean you off it" and give 2 treatments fortnightly for 3 - 6 months and then go to monthly treatments, reviewing you all the while. We ended up getting it anyway, but around treatment 15 - 25 is where I noticed most of the improvements. 

There has also been a downward trend in my liver enzyme counts, possibly due to the GVHD too. The cramps (my other major GVHD symptom) haven't dissapeared since commencing - I've actually noticed they, and the other signs of GVHD (skin darkening/itching) that I could feel, seemed to "flare up" the day or two after treatment - which my doctor said often happens. So don't be alarmed (but do tell your doctors nonetheless! If it's flaring up, it could be a sign of something else entirely) if that seems to be happening to you too. But the cramps I have are happening within the nerves supplying the muscles (this happens for many GVHD patients actually - if you, or one of your patients are experiencing this - you may want to get an EMG done to see if that's the case. Treatment post this is limited though), which can take a few months to a few years to repair themselves. So it may be a while before I see any positive impacts of that too. 

According to the nurses/doctors running this (it's a newish/less documented therapy, so I know it's hard to find info regarding it) - my GVHD is MUCH less severe than other people who are on this therapy. And others who couldn't walk without a walking aid, or couldn't eat things easily (bending the arm was hard/painful to do) have been helped immencely because of it! 

Tis is just a "just in case warning" but a few months ago, I started seeing these red dots in my eye's vision (you couldn't see it if you looked at my eyes, but I could), about 3 days after an ECP treatment, just before I slept. And within a few days a "central retinal venous occlusion" had been seen, blocking blood supply to the eye, and causing my left eye to become blind.

Last week, as of June 2015, it happened in my right eye too. Luckily, for some reason, the occlusion cleared up, or wasn't as severe (I drank a lot of water this time after seeing it - that may have helped) and I've still got vision there.

The doctors aren't sure what's caused it - it can happen to anyone really, and they've ruled out all the major causes. But dehydration can sometimes cause it apparently, and the eye doctors said the ECP treatment may possibly have exacerbated that.

It's just a "just in case" warning, because they're not certain of it, it's the only cause that they can't rule out sort of thing (it hasn't been documented with ECP either this issue), but just in case - for Sam to avoid anything like this - make sure you drink LOTS of water, the night before, the morning/arvo of, and even during the treatment.

This is a blog post I did on what happened and what went on -
Part 1 )the first time it happened.           This is part 2 (last week's) 

But don't be afraid - I was likely a 1/1000 patient who that happened to, and there's only a tiny chance that ECP has actually caused it too - indeed, there's no proof. It's just a theory. But it's better to be safe than sorry, and drinking a good amount of water before and after the treatment is recommended anyway, so why not?