Monday, October 17, 2016

The Forgotten Generation of Cancer Patients.

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This is heartbreaking. But what's even worse is that teenagers like these guys receive the lowest funding of any age group, even though their survival rates have improved least. Here's how we can fix some of that.

Late last year, an exciting thing happened. 

I managed to get medical students invited to the international adolescent and young adult cancer conference for the first time ever!
It's an area of oncology that's been neglected for a long time, despite the fact that there's a huge need. Contrary to popular notion, the incidence of adolescent and young adult (AYA) cancer is higher than that of paediatric ones. There are over 1000 cases in Australia alone per year. Yet despite this, both the rates of improvement, and funding, in comparison to childhood and adult cancers remains markedly lower. 

Hence the excitement. 

How do you get the knowledge gained from this out to as many medical professionals as possible, when little is being done by larger organisations? How do you make sure that less cancers are missed in their earlier phases, and that the needs specific to younger cancer patients, many around our age, are met? You make sure the next generation of doctors are aware of this. 

 Hence this article.

I guess the major takeaways from it can be organised under 3 banners. The science. The services. And the social, psychological and practical impacts of cancer on youth. 

The science.

It’s important to appreciate that cancers affecting AYAs are starkly different to that seen in their younger and older counterparts. Even those that are similar tend to have different prognoses; Acute Lymphoblastic Leukaemias, despite having a very high cure rates in children, are much more deadly to youth, for instance. Similarly, many youth suffering from thyroid cancers have much more dire prognoses than older patients. Factors such as differing hormone levels, leading to different mutation profiles and reactions to treatment, and perhaps more sinister manifestations of cancers down genetic susceptibilities may be reasons for this. But other currently understudied factors exist too. As was pointed out by Olivia Watson of Sydney University, there is a “surprising discrepancy in some treatment outcomes in New Zealand”, pointing to the possibility of race affecting outcomes too.

The lack of knowledge further highlights another issue, the lack of trial knowledge, which stems from both lack of clinical trials focusing on AYAs and a more systemic one, in the deficiencies seen in data collection in cancer. The prior is a result of both the burden of disease of cancer being higher in older populations, and the lack of facilities. “Paediatric hospitals often having higher trial participation” due to better infrastructure highlights that this is an issue that can be fixed, and the government’s recent $7million investment in clinical trials for this age group is a step in the right direction, but more needs to be done on an international scale for results to be seen. The lack of sophisticated, or even complete data collection by cancer registries also poses a challenge to the collection of even epidemiological data, and it’s a challenge faced around the world. Many presenters lamented these shortcomings, but again, progress is being made. I was fortunate enough to sit in on a workshop after the congress with doctors from the US, UK and Australia, trying to make it easier to share data over national lines. Perhaps international cooperation will be the solution in the challenging climate of relatively low numbers of patients?

Of course, issues and priorities very different to those in other age groups are also pertinent, and often less appreciated by doctors and researchers in this field, for this population. Contrary to popular opinion, fertility is a major cause of distress amongst younger cancer patients, being a feature of even 12 to 13 year olds’ thoughts, and “considering sexuality” and “delicately exploring any functional issues” due to the impacts of cancer is also important, points out Sophia, an ex UNSW medical student, as it has “measurable impacts on quality of life”. Finally, survivorship is also a vital issue, especially in this population, with high levels of anxiety due to fear of relapse (often dubbed “scanxiety” by patients), disability and late effects of treatment, including secondary cancers, being huge factors. Indeed, much of this can be attributed to our lack of knowledge. As a presenter pointed out, low rates of trial participation by youth is likely causing either too high, or too low doses of chemotherapy being administered to patients, for identical cancers. 

But there is hope. Not only in the future due to that government investment, but right now, with an exciting presentation being given on one hospital’s successful experiment of giving highly personalised treatment regimens based on patients’ own mutation profiles alone, drawing great applause. Especially remarkable was that the prescribed treatment was based, in many cases, off of other cancers’ trials. A step made necessary by the lack of appropriate treatments.

The services:

Imagine having to pick, on the day after being told there is a high chance you may have to face your own mortality, whether you’d like to be treated in a paediatric, or regular hospital at the age of 16. 

Beyond the outcome-related repercussions of your choice, are very real, and very important, other factors too. Whether or not you’ll be able to get access to a social worker familiar with schooling, or university admissions. Whether you’ll be able to see the same doctors, or be referred and treated inside the same hospital during your probable life-long follow up. Whether there is even a support network or buddy system, or even One.  Other. Damned patient with whom you don’t have to verbally joust to avoid allusions to “how unfortunate” it is that you in particular are facing a disease their cousin had succumbed to themselves.
Again forgotten in many regards, the unique challenges of a life completely interrupted, academically or career-wise; issues like fertility-preservation and also that of palliative care, only add to this. Great examples were given of programs to make hospitals more youth, frankly, person-friendly environments, and many, such as opening up reliable wifi to patients and things like shared recreation centres where counsellors could also be stationed, could be done relatively cheaply. But others, such as fertility preservation, will require systemic change, which isn’t easy when there are challenges, such as the government’s proposal to reduce medicare rebates for fertility preservation. Little thought is given to AYA cancer patients in many sectors of health policy and service providence. But luckily, patient groups around the world are striving to fix that. And often, many of the services that do come into systems are pioneered (and often provided solely, as in the case of cancer psychological support services by CanTeen in Australia) by these groups. But systems are necessary to offer support still.

The services are still pretty damn important. CHOC - the Children's Hospital of Orange County - put this together, but just as cool is a Patient Station they have in their hospitals which feature virtual reality platforms too!
As Madeleine FitzPatrick of Western Sydney University’s medical program aptly put “if we treated all our patients as we do in paediatrics, we’d have much better outcomes”, and in many instances, it’s true that they do boast superior support systems. But there are many issues which require more in general, and when you factor in the low numbers, low resources and the lack of specialised staff in this field of medicine, it becomes a tough challenge to solve. 

Interesting is how the interplay of differing health systems, differing classifications of what exactly “youth cancer” meant and differing types of providers, leads to different approaches. The UK, specifically, England, seems to be most ahead of the pack, with its public, regionally-zoned healthcare system allowing for the building and providing of services and treatment to be done from hospital specific cancer units. There are 28 of these, reasonably spread out around the nation. The US with very diverse systems, both state by state and hospital to hospital, would find it challenging to implement such a scheme, so it’s often up to hospitals to learn lessons from others, or, where that doesn’t work, for not-for-profits to pick up the slack, support wise. And in Australia, CanTeen has revolutionised itself to become a service provider, and with help from the government, has established the Youth Cancer Services network, seeking to unite as many young cancer patients as possible to youth cancer specialists in many fields, through strategic placement of staff in major cities. More focus on these, and more funding is indeed, necessary. But knowledge that these services exist by us, the future of this field, will ensure that those services will lead to less suffering.

Perhaps the most eye-opening part of this conference was revealed to us by one of the most inspiring. Palliative care is a topic last on many patients’ mind as they progress through their cancer journey, but it’s not only necessary for some, but very misunderstood too. As Stevie, a palliative care patient herself, put to the audience, it isn’t just something offered to patients to reduce suffering. It restores dignity. It improves functioning. And in many cases, it isn’t even necessary that you need to be dying to access, and benefit from it. Superior pain management is but one example of the benefits of involving palliative care physicians earlier than at day’s end. And the insights Stevie offered into the suffering faced by doctors too as their patients are taken all too young were remarkable. I myself spoke to those gathered and reminded them that no matter what the outcome, they can and will always be able to change lives. It wasn’t the medical decisions and prowess that made my doctors special. What made them special to me was the times they were there for me, beyond all that. Those times we talked about fishing before delving into a consult. When one doctor walked me to a biopsy on his way to another department. When my treating haematologist wrote a letter in to the UMAT board imploring them that I be allowed to sit my entrance exam. Those things changed my life. And I’ll always remember them. Forever. No matter what.

The social:

Social and psychological impacts of disease are often most overlooked in treatment, but when considering the disruption to the crucial developmental and growth periods many in this age bracket are in, and the high rates of depression and suicide it suffers too, it becomes vital these issues are addressed.
Higher rates of depression are faced by patients and survivors of youth cancer, and also by their friends, siblings and parents, all too oft forgotten in day-to-day care. Though it’s impossible to fix every aspect of this, it’s important to, at the very least, acknowledge it, and refer out to specialists which as you now know do exist on this matter. Within Australia, often that’s provided by CanTeen.
Furthermore, risk taking behaviour is also markedly increased in this population, both generally, and specific to youth cancer patients, and so it becomes vitally important to not just be aware of this, but to also take every means possible to reach your patients. Lessons to medicine in general can be taken away from this, as one patient pointed out that they were “more likely to take medications regularly” if they were properly explained “why [they] had to take those medications”.
Indeed, doctors are responsible for much of the suffering faced by patients. And that’s reflected in both scientific studies, and also by a survey I took at a patient and family member conference prior to this one’s commencement.

This was but one response to those questions… 

As you can see… it’s heart-breaking the impact of cancer on young people. Hell, it's heartbreaking for everyone. But as the kid in response 2 and I myself, a 3-time cancer survivor, now medical student can tell you first hand… the impact of being connected to and just talking to someone who’s been through what you have is immeasurable. This, the connection to services and simple friendship is literally the difference between pain and relief, anxiety and acceptance, even life and death for some. And all these things, we have this amazing privilege to be able to provide.
So if you take anything away from this, please let it be that.  

Friday, October 7, 2016

Not Your Usual Motivational Bullshit.

Motivating someone is hard. There are too many 'thought leaders' out there telling everyone who'll listen, 'If I can do it, anyone can!'. But it doesn't work for those who've lost everything. Here's how to motivate those who REALLY need it.
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I saw some rehab specialists today. First time I had actually, which is surprising, given how many different aspects of my life have been compromised by my Graft Versus Host Disease. 

Anyway, that's how I ended up walking up and down a ward, over and over. Apparently the magical cure to my debilitating cramps is walking... 
Who knows though, it could work. Worth a shot, right? 

So there I was,, doing a 6 minute walk test, putting up a number that I'd be ashamed of 5 or 6 years ago, when a lady I kept passing kept calling out to me. I didn't understand her at first, I thought she may have been delirious or something. But on maybe the 5th lap, when I strained really hard, I finally heard what she was saying. 

"It's so unfair... I used to be able to do that."

"Awww, why are you doing this?"

"It's so unfair..."

At first, I was embarrassed. And a little mad. I'd just realised they were making me gallivant my way across these halls in front of peoplew ho can't even get out of bed, yet alone do the things we take for granted, like getting up to go to the toilet. 

My next response. Annoyance. No, closer to Indignation. How dare she say it was unfair that I was doing "well" (most of you who are well bodied and young would agree that being able to walk a grand total of 300m in 6 minutes isn't exactly a portrait of good health). What did she know about what I'd been through to do this? About how the cramps which debilitated me at night and left me screaming, just begging for it to stop??

But I held that back when I remembered where she was. Unable to walk, even get out of bed after a stroke. It was exactly where I was years ago, as I was learning to walk again after my own transplant, as I tried and tried, over and over again to regain a semblance of normality. How would I have reacted to an indignant prick who'd tell me that they'd done their time, their fair share of suffering then? Not well.

But as I thought about what I should say, striding back and forth through the ward, I also asked myself how I'd have reacted to a pompous prick proclaiming, "I've done it, so can you!"

Not well either... 

That's the thing though. "Motivational speakers", "thought leaders" and "inspiring personalities" are all the go these days. There seems to be 30 of them for every one of us. 

It's all good and well when we hear their stories. I mean, if you're normal, or if you feel good about yourself and the world, they often can lift you up. If they can do it, anyone can, right? 

But if you're not in a good place, if you're suffering something devastating like this lady is... If you're facing a chronic illness or disability; something that won't budge, no matter how much you "positively think!" about it, or if you're depressed, and miserable about yourself and the world, it literally feels like these people are saying you're just whinging, ungrateful or inferior for your suffering. That you're weak because you haven't been able to get over it, like them. 

It doesn't help. It literally makes them feel more down. It discourages them, the very opposite of what's intended, when you're not well. I know, I've been there, and I've hated hearing those things too. 

What should you say, you ask? 

Well, it depends on the person. There isn't a one-size-fits-all solution. 

But what do most need? 

Encouragement is one thing. Acknowledging that their pain is real, and important to you, is extremely important. It's vital. No matter how much your mind may say otherwise, no matter if you're a doctor, nurse, or just a friend who's watched on as someone going through much worse just grimaced and got on with it, and are now dealing with someone who thinks their world's just ended or someone who tells you they have nothing to smile about, their suffering is real and just. 

Who are you to say their pain isn't pain? 

I can honestly say that depression, and this chronic illness (not just the horrible aspects of it, like the cramps, but how it makes me feel about myself and what I can do) has been harder to face than every single battle I've had with cancer. 

At least with that, I had an end in sight. Something to work towards. 

At least in that, I had my mind on my side. 

So don't tell someone like her, or anyone else who's really down, for any reason, that they should be "grateful because some poorer soul out there is suffering more"... Again, ask yourself how that helps. You've literally given them no way to get through their pain, just told them, in this case, intentionally, to their face, that they're weak and ungrateful and don't deserve to feel the way they do. 

How then do you give someone something to get through their struggles, when those struggles seem so deep? 

Well, I think letting them know that it is gonna be hard, that it does, and will suck at times, is vital. It doesn't kid them, it doesn't give them an overly rosy perspective of the journey to come, and contrary to what you may think, when you're facing something terrifying, and are at rock bottom anyway, it prepares you. And gives you only one way to look, and think. One way to go. Up! 

After this, show them that though it is a long journey, you can make it easier. There are hundreds of little tips and tricks, things that take only minor changes to your habits, lifestyle and mindset, that'll help you get through things easier. 

Facing long rehab? Like you're just trying to get up and out of bed for the first time in hospital, or for the first time in a while when you're depressed, rehab? 
Do those exercises that seem to take everything out of you in the evenings, or mornings, when you're about to shower anyways, or do it right after food, when you're most energetic. Get the pros to help you. Get them, or get others who know (the internet and chat rooms can be a great resource to help you do this), to give you the easy ways of doing things. The rehab physicians I saw today gave me exercises to do while sitting down at a chair! Perfect for not just my cramps, but my exams coming up soon (God help me). 

Ask a friend to help you, commit to something you can't easily skate out of, and you get others on your side in this battle.  
Indeed, if you're in a position where you're trying to help someone, get them someone they can look up to! Someone who may have been through something similar to them. You may not be able to fathom what they're going through (and I believe this doesn't mean you can't help), but there will always be others who can! And they can help so much... That was certainly the case for me... When I was going into my first bone marrow transplant, I was terrified deep down, until I saw someone who'd been through it too. Just seeing them gave me a sense that this could be okay. That the pain and misery in my future did have an end point. And the chats we had throughout it, the tips and tricks and encouragement she gave me just stuck more. There are so many tools out there, set up by the government, hospitals, foundations and just the internet that connect people together. Even if you can't find the right words, right away, someone out there can! 

Feeling like it's not working? That all the work you're putting is getting you nowhere? Or that getting better is so long away? 
Give it time. But give yourself something to work towards. Look at the big picture, what this is all for, and give yourself a goal. An end point, something to keep you marching forwards in those hard times. Make it a long term goal. One that you can keep yourself accountable to by setting smaller achievements to accomplish. Write it down somewhere. Post it to Facebook, and make yourself accountable. 
Make that reason for going on an ideal; something greater than you. To care, or take away the suffering of your loved ones, to work for others, or something you believe in. And by doing this,  and you rig your mind to not just look at the big picture, but place getting there as one of your top priorities. 

But if you're feeling like giving up, then the last, best thing you can do is to let yourself be human. Believe me, you'll feel like giving up, or that it's pointless, or that you'll never get there many times on your journey. Whatever you're accomplishing is hard enough when you're normal and facing so many external hardships, yet alone when you're facing internal ones you feel like, or you physically can't control. I've done some crazy things in my time, and so many people call me an inspiration for many of them. 

But the truth is, I've given up on so many things too. I've told myself, "Why bother exercising when I'm gonna get sick and lose all I've gained anyway? When I can't even do half of what I used to," so many times now, it's not funny. And I've succumbed to those too, along the way. 

But it's when I'm pushing myself too hard that I do this. When I tell myself "Anything's possible" and set myself on something that, halfway through, feels impossible to me, I lose hope, and feel like giving up. 
Which is why acknowledging to them, or yourself, that there will be hurdles, obstacles and failures along the way; that your goal may take months, or years to accomplish is so important. 
It's why telling them, that their goal, their deepest desire may not be fulfilled isn't disheartening. Because giving a shot and trying, even if it brings only small comfort will still matter, if not to them right away, then to those they love. 
It doesn't discourage you, if done right. If these are acknowledged, but you're also given ways of getting through those hurdles, or at least, assurance that help and friendship will be there when trouble comes, it actually makes you more likely to succeed. 

And I guess that's at the heart of what I always try to say. 

Do I believe you can do anything you set your mind to? 

Well, if you're well of mind and body, and if you're afforded the opportunities you deserve (which many, including the poor, women and other marginalised populations aren't) then, barring the impossible-according-to-the-laws-of-physics, yes. 

But if you're not, it can be much, much, harder. 

You should never impose your beliefs and values onto others; especially those who may need your help. 

But that doesn't mean you can't. 

And I hope I've given you one way to try and do that. 

So what did I tell her? 

I told her that I'm sorry for her pain. That I could only begin to imagine what she was going through. That it must be horrible.

But then that I myself had been at a low point once myself. That I'd seen others who had been through what she had, and recovered. 

That I didn't know what was possible for her. That I did know there would probably be times you feel no difference, that you may go backwards at times, that you may wanna quit.  

But that there is an end goal that you can and should aspire to. That this could well be the very thing that gets here there. And that she was in the best place to get her there.  

I wish her the very best.