Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

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We won the award, friends!

Last week I woke up in San Francisco and looked at my cellphone to see that I had loads of notifications on twitter when I hadn’t really tweeted anything.
I wondered what had happened. When I opened the app, I was overwhelmed and then disbelief took over when I saw that I had won the National SCoR Radiotherapy Student of the Year 2016 award.
I stared at the website at my own name for like 15 minutes, unable to almost recognise it: it middle-named me (Now you all know my middle name – which I don’t like, FYI). So it was strange to see my real full name – not Smizz, not just Sarah Smith. The whole official Passport, birth-certificate name. Official.
I wondered throughout the day whether or not to share the news on Facebook publicly, And I decided I would.

ONLY because I want to dedicate this award to you.

 

To my friends (both course friends & placement friends & twitter friends; friends before this course & my art friends & friends afterwards – ALL my friends), I want to dedicate this award to my lecturers who helped me figure out how to write somewhat scientifically, who tried to give me some confidence & support my ideas; I want to dedicate this to all my Leeds Teaching Hospital Colleagues – who all mentored me and supported me throughout the last 3 years – You guys really showed me what incredible patient care looks like, and supported my energy to make things for patients and students. To my doctors and healthcare professionals who inspired me to get into radiotherapy through their care & kindness towards me & i felt like I needed to give that care & kindness back. And I want to dedicate this to my patients; all who trusted me with their lives, their hopes and their fears. I am humbled.
And most of all, I want to dedicate this to my family: My mom & Bro & nan the most — who support me in what ever crazy road I take and are always there for emotional support and belief.
I’m only here because of y’all.
The reason I feel so incredibly emotional about this award is my journey getting here. After falling really sick & getting told it looked like Lymphoma – something shifted within me.

Everything changed.

 

I had to use this experience – as patient, as artist, as social justice worrier – to make things better for others within the healthcare system and community. Every time I was in the hospital as a patient, the gaps would stare at me. But I also felt this incredible need to give back to the system what it had given me: hope & incredible care (most of the time & eventually).
But I didn’t want people to think I was peacing out of the art world. I was, and still am an artist – first and foremost. So I secretly applied to do my undergraduate in Radiotherapy & Oncology. To give back. When I got accepted to the course (another surprise!), I worried about how I could explain to others what and why I was doing it. I worried about it all the time. And when the day finally came, I convinced myself that I didn’t need to say anything at all. But I was wrong.
Since then I have worried again and often – that I’d given up my art career and I sucked at being a healthcare professional; that I wasn’t smart enough, that I was slow, under confident, that I’d chosen to go into healthcare because you can’t make money in art (the worst), or worse, that I simply did not care about art any more. None of these were true, either.
But, the story is more complicated.
I worked harder at building my art practice than on anything in my life, though it never felt like work. I devoted myself to it, though it never felt like sacrifice. And to my delight, it kind of began to pay off! Until I fell sick. And everything crumbled underneath me. Like my own identity.

I am also endlessly grateful. Those years gifted me experiences, skills, lessons, and friendships. I would not be me without them.

 

My close-friends saw me nearly go under and knew I had some close calls. It took me over a year to regain slight normalcy. Suffering, i tried to get back into the same art-stuff, all my jobs. But my body was still broken.

It is easier than ever (for most) to go to university. But many forget that it’s a rare privilege to find something you care about so deeply and be able to make it your life.

 

I realized I couldn’t have my old life back, but I also kinda didn’t want it anymore.

But I’d kept all this secret for ages. Switching to Radiotherapy WAS HARD.
In art, it’s about a lack of boundaries— complete freedom. failure is a default. It’s ok. You try and test ideas, and adapt – a bit like a PDSA cycle. In healthcare- everything is boundaries, everything is rules (for good reason (mostly)). The work, whilst I was feeling poorly, was heavy – and physically and emotionally labour intensive. The amount of stuff I had to learn from anatomy, to reading CTs, to radiological physics, to NICE guidelines to learning treatment protocols, learning all of the machines & regimes & dose calculations & treatment planning software etc, and what’s right, and how we do it at our local centre was all crazy.

I nearly quit in January 2015.

 

I was in and out of hospital myself. I’d been run over on my bike, I was in a fire. I was in a lot of pain. I cried at work on to my mentors in Sim (i’m really not a crier – esp. publicly). It was so embarrassing. We joke about it all now. But I was close to the edge then.
I didn’t think I was going to make it. I felt like a black sheep. I felt like a failure. I felt so behind my peers. What happens if I screwed up both my art & healthcare opportunities and get left with nothing? I would loose everything. I didn’t even have my health.
But I knew if i could get through it, because that’s the working class artist kid in me, I could make things better for patients and HCP if i got through it.
Through reflection, using my artist sensibility & my yearning to make the patient pathway better & my fellow students life easier – with my time:
I started online revision groups, I went to conferences and delivered papers.
I won student leadership awards.
I made more and more things to help people.
All using everything I had learnt in art and my time in the art world & my experiences from clinical placement and as a patient. Because friends, healthcare needs creativity, kindness, and good design. It kinda needs artists, for sure.
In the end: I graduated with 93% First Class honours. I got a full prestigious scholarship – free ride & $$$ – to pursue my PhD to cement my theory that using artistic practice can help enable better patient information, and re-design things in the oncology system with the user (patient, citizen, HCP) and experience at the centre of it — using their experiences.  Being a hybrid of: clinical radiotherapist and artist and patient in one is absolutely vital to this phenomenological, qualitative research.

When I left America years ago, I was on a plane home because I was dying. I lost that old life, but, I’ve gained a new one, and I am incredibly fortunate for this.

I think the greatest freedom that I’ve gained is the fact that I no longer have to worry about what happens tomorrow, because I’m happy with what I’ve done today.

Winning radiotherapy student of the year makes me feel like maybe all this happened for a reason.  I feel like I might have , maybe, actually helped some people during my training – and this means so much to me than any title, any job, any exhibition.
I’ve lost so much, but I’ve gained so much more.
I don’t know yet what’s next for me, but these past few months I’ve been thinking a lot.

I’ve been thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility pay it forward, thank everyone who got you there & plan for the day that you might not be able to do it.

 

So here I am. I dedicate and want to share this award with YOU
To my placement buddies for all the laughs, the cooking, the tears, the sharing of knowledge, the late night last minute pebble pad sessions & the words of encouragement. To all the staff who helped me to become a qualified radiographer. Who wouldn’t let me put myself down. To showing me what listening and really caring look like, to believing we can change things as healthcare professionals! You know who you are. And you deserve this more than me. Thanks for the belief and hope and love friends! I wouldn’t be here without you all, in every single way possible. I know this is a product of you supporting me, and teaching me, and believing in me. We’re all going through something.

You’re all amazing.

I’ll be taking my Nanna to the ceremony in London. She’ll be so proud, & I’m so happy that I’ll get to take her.
I’m humbled by this. And I wanted to share a bit of my story of why this means so much to me, and for you guys to know I never, ever, take this stuff for granted.
Lots of love, gratitude and shock.
To using my time well & to help others.
THANK YOU ALWAYS
Much love always,
Your friend Smizz.
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A long view of time can replenish our sense of ourselves and the world.

A long view of time can replenish our sense of ourselves and the world.

I’ve been thinking about it for weeks. Every so often when campers know I’ve been pretty poorly over the past few years, they ask me how everything is. I reply with that it’s the most “normal” I’ve felt in 3-4 years.
But it got me thinking: on Returning to Normalcy … What Does that Even Mean?
The last time i worked at Sandy Island, properly, My life was in a state of mental whiplash and I barely even realized it. In barely a few years I’ve gone from being in a death spiral to staying up super late drinking wine with friends, climbing icelandic waterfalls, running for late buses. I went from planning out my funeral to doing radiation oncology and beginning to start a PhD. I’ve gone from thinking I’d never step foot at Sandy Island again, to working my longest summer contract here.
But it’s taken me to get to this summer to look back to see just how far I have come, compared to even just last year. Even in January this year. Even April.
Before going further I have to share how profoundly grateful I am to everyone. I can’t even write these words without gushing tears.
So the thought of a return to normalcy is like a warm embrace: to feel like the last few years were a mere aberration that has been rectified. I can’t explain the joy I got when my brain could feel bored and my body wanted to live again. I have about 4–6 hours a day that feel like they did before. The thought of getting to blend my social passions with community and art and social change immediately sets me to problem solving and creating again. Or the thought of unlocking a new meaningful lifestyle that I can plan for has me losing sleep piecing it together while I should be sleeping. I tweeted the other day that I’m already overwhelmed by the projects I’d like to work on now. It made me so happy to tweet it, to feel like I could be back to normal.
But how can I expect life to be normal? I’m still on a small doses of medications to help with everything from pain, to swelling, to hormone balances, to immune function stuff. As much as a return to normalcy seems the obvious goal, I’m definitely not normal now – so much pain & fatigue, still, and it just hit me I have no idea what was so great about normalcy before.
Being in the USA, seeing friends, being at Sandy Island with friends (staff and campers) has been incredible because these friends are all hard chargers, both professionally and personally. They’re exciting to be around because they are making the most of all parts of their lives and doing so thoughtfully. One of them asked what the projects were I was referencing in my above tweet, and in full imposter syndrome mode I stumbled at trying to explain what I was going to professionally do.
I constantly share that my biggest life insight is that while you have the time, optimize on the meaning you find in life.

In some rush towards normalcy and wanting to make the most of said normalcy, I find myself leaping to my old life – a life where I didn’t see my family, I made excuses not to see friends so I could just work or do less meaningful things. I told myself that I was going to do loads of things at Sandy this year, and I didn’t – as much as I wanted to. I should have spent more nights with Julz and Katy. I should have visited Anya more. I should have drank with Chris more. So many shoulda-woulda-coulda’s. Instead, I spent a lot of time trying to catch up with online stuff (such slow, at times non-existent, wifi). I spent quite a bit of time in bed – fatigue. I spent time that I have no idea where I spent the time?!
So there, Sandy Island: I‘ve been racing to get back to normalcy, racing to shed my death shroud, and I’m on the verge of disrespecting what I’ve been living through just to feel “normal.”
What is so great about normal?. Many of the years of trying to work as a freelance artist were financially crippling. The past years working freelance and undertaking clinical placement whilst feeling ill were exhausting.
Am I sick or am I better? Is a return to normalcy my goal or my loss? How can I maintain this profound sense of gratefulness for life, if I queue up in the same old lines?
Is my death shroud an exoskeleton I can to pull myself out of, instead of dragging it along?
This summer has given me the time to reflect upon this, and think out what’s next, and Sandy Island people are helping me figure this new chapter out, and reminding me just how lucky I am. I’ve never felt so loved in my life; and I am so grateful to be.
Special friends have showed me just how normal love looks. It’s not always a mad-dash to the airport, it can just be a heartfelt hug for you feeling better. It can be an incredible gift like a personalised book full of love and wisdom to help guide you when you’re not super sure what’s next. It could be a cool turtle dove as a reference to your most favourite movie ever (friends for ever — home alone 2!).
The gratitude i feel for all of this is completely over-whelming.
A pilgrim is said to carry all their back-path with them as they move forward. It is the back-path that brought us to where we are now. Without it, we cannot enter the path that lays in front of us.

So i’ve been asking myself: Can I make a future of the unknown and still be myself? Can I ever return to normal? And why do I want to?
Thanks for reading this far if you have.

Much love always, your friend – smizz x

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Between two spaces.

For a long time Samuel Beckett’s 7 words: “I can’t go on. I’ll go on” has captured the last few years for me. Re-visiting the old habits of my past life has got me re-thinking everything again.

I’m writing on the MegaBus, my transport method of choice for writing. Long delays, bumpy roads, all on a few dollars – seems to represent my life well. And what else is there to do on a MegaBus other than to over think about all that is and all that was and could have been?

I’ve spent the most incredible few days in NYC catching up with friends and being half wanderer and half tourist. Half ticking ‘living-list’ items off, half just literally watching the sun move across the sky – relaxing after an incredibly hard year. But all of this has given me time to reconsider my position. 

I’m now well stuck in between two spaces –  in between sick and fully healthy, in between degrees, in between art & healthcare, in between transit from one place to another. And when I fell sick, I couldn’t get out of bed, I coughed up blood, I was in severe pain, constant heavy nosebleeds, drenching night sweats, loss of sight, black-outs. It was pretty rough. 

And naturally because of this health issue, everything changed. Everything. My art career changed, my future plans had to be re-adjusted, I wasn’t sure if I was the person I wanted to be if everything ended right there. And for the past few years I’ve spent the years re-negoitating with my body, with my own identity, with my left-over abilities from being damaged on where to go and how to use this experience.

The thing is, I’ve used what’s happened to me as fuel for both incredibly good changes in my life, but also i’ve used it as an excuse as to why I haven’t done other things. I mean, I literally couldn’t get up – so I don’t think I should be too hard on myself. But the thing is, whilst I’m still not 100% and I live with a fear in the back of my mind that it all could easily come back as easily as it appeared — I  no longer can hide behind this excuse of having not done a certain amount of things (art & societally wise). And this doubting voice has started to get louder the closer i’ve got to the end of my healthcare course.  

A bit like when an athlete gets injured, they become less valuable. They might even have to retire early – condemned to areas in which their talents do not lie. 

What happens if whilst i’ve taken a bit of hiatus – what it really shows is that I’m actually not a very good artist? I feel so behind my peers in so many different ways now. I’m getting old.   What happens if I’ve de-skilled myself? So many what-ifs, so many worries?  And what does all  of this mean? 

I think I’m starting to feel the importance of my next body of artwork and the vulnerability of that. That and the vulnerability of being stuck in between two spaces and places and trying to coherently string  this broken fragmented life and experiences together. 

It’s been a good few years since I’ve had the luxury to doubt my work. After all, doubting the future is a luxury only lucky people get to do. And it feels like progress to some degree getting to this place. 

On the bus, I spoke to Katie about these worries. She seemed unfathomed by it and compared it to all development.  Bringing direct inspiration from Britney Spears career – how she has her ups and downs. one album is shit, the other is great. Using all the experiences together to move things forward.

She concluded that, “you’re in the present moment, so you live in it. you do what you need to do in that moment.”

I guess I’ll never know if I had never fell poorly, whether or not I’d be a better, more established artist (or a more established practice/body of work). I can only take off my rose-tinted glasses of the past and Push against these two spaces between me. But I do feel in my bones – that i’ve made some important things for others over the past 2 years, even if the art world canon will never recogonize it. 

However, i’m hoping to spend the next 2 + months finding my artist voice again. Re-building the existing foundation to strengthen my critical art world voice. I’m not sure at all what will come next – but I know what my works NOT going to be – and I know, for sure, that I’m going to use all of my time, and use it all wisely.  

I can’t go on. I’ll go on.

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learning to lean in

Words are  often a poor substitute for imagery.

One of my Doctors: “So Sarah, why do you want to work in healthcare – even though you’re an artist?”

I spoke about my own experiences & the opportunity artistic practice can offer to enhance care and services – the ability to use a different perspective to make a difference.

He turned to me expressed his heartfelt regrets and said: “Art gives you, like flying, something that other people don’t have.”

It was as if he was saying, what you lack in a functional immune system, you make up for in other unique ways.

And with this, a few days ago I found out that I passed my radiotherapy & oncology BSc Hons degree with a 92.6% First-class degree!!!

I have a fully-funded PhD scholarship offer bringing together 2 of my passions together (art & healthcare) that starts in October, and I leave for the U.S.A in 5 days times for a good couple of months. I genuinely can-not-believe it!!

Not too shabby for the working class kid with no science background or previous healthcare working experience.

I am humbled, and most of all feeling extremely privileged to have shared this crazy journey with you all. I wasn’t sure I was going to make it to this day, in all kinds of ways, and for this reason this achievement feels incredibly important and special.

For a long time, I had made who I was by being a work-horse. I could totally juggle 8 things at once. I could totally stay up til 3am in the morning working on hopeful-kick-ass projects/ideas/gigs – and then get up at like 9/10am the next day — no questions about it.  My mind constantly buzzed with all the cool things we could do. I’d sleep with a notebook and jot down cool ideas in the middle of the night. If you needed something doing – I was the person! But Nothing prepares you for the day when you can’t do what you do any more.

I didn’t feel like myself. I felt broken. I loathed who I had become.

There I was, hopeless – barely there. Not feeling alive.

I cried. I felt sorry for myself. I didn’t believe it was happening to me.

I’ve spent the last couple of years searching for the Old (younger) Smizz. I’ve looked for her all over  —But there’s no going back to my old life.

I am broken. There’s no protocols or discharge instructions to guide people back to their lives.

But I am alive.

I do think about that a lot.

 

This degree course allowed me to gain some control, it gave me some much needed (if not too much) structure and helped me to try & hopefully make a difference. After all, what is the point of saving a life if the life isn’t a meaningful one?

And the friends I’ve met whilst doing it – all with their own personal stories – have helped to inspire, and alongside all my other friends, they’ve helped me to carve this new path for myself.

It highlights the fact that I’ve never actually accomplished a single meaningful thing by myself, and this is included.

The past few years has taught me that reading the fine print of your mortality is a great sifter of rubbish.

In the chase for the extraordinary we can sometimes forget to embrace the ordinary moments. It’s about embracing our vulnerabilities and learning to ask for help. We also need to invest in others without expecting returns – because that’s real love.

And it’s about realizing that your time is valuable — what you do with it, how you spend it and with whom.

 

It’s picking yourself up when life knocks you down and finding beauty in your bruises. But this might take years and years to do, it’s not an overnight fix. We are all damaged & broken & traumatized & mistake making in some way or another. But it doesn’t define who we are. So don’t be so hard on yourself. And Don’t be so hard on others.

3 years ago, I literally couldn’t get out of bed. Today marks a HUGE milestone for me. I got out of bed each placement morning (1000’s of hours of free labour) (i wasn’t happy about it lol), I ground myself down, I gritted my teeth and pushed through most of the fatigue & pain, and some how completed 3 years clinical education. Super early mornings, physical lifting, lots of moving, emotional distress, stress, deadline after deadline, many naps where ever I could find them, doritos and a 2 year long headache. And somehow I got here.

Whilst I still live in deep pain, and still haven’t learnt my fatigue limits, and I’ve lost feeling all on my left side, and a headache that often leaves me crippled to the floor. I’m proud of how far I’ve come. Recovery is hard. I don’t think we give enough people credit for that part.

I Never, genuinely – hand on heart –  would have believed any of this would have been possible.

So thank you to YOU ALL.  My mom, my bro, my nan, my amazing friends – old & new, stafff, lecturers, my twitter fam, my internet friends. Anyone and everyone.
Without your advise, support, jokes, cleaning, food, tears, stories, knowledge and just being there and accepting I take 7-10 business days to return a text/email – I’m not so sure this would be the blog update it is today.

I plan on using all of my time allocated.

And I can’t believe I’m here.

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Launching A Radiotherapy Story

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About a year ago, I saw a really cool website from Canada about the Faces of Healthcare.

And I thought, wouldn’t it be cool to have something like this for radiotherapy, and the surrounding services (which is essentially pretty much EVERYTHING in the NHS). Oncology is very much one of the most inter-disciplinary areas within healthcare, ever. From dietitians, counsellors, all different types of doctors, dementia care, mental health, social workers, GPs, ambulance drivers, nurses, students, volunteers, etc — it’s endless! Trying to seamlessly work together to provide the best patient care and experience.

It is for this exact reason why I believe we should celebrate our profession and our patients and their carers and loved ones, and for every single person who is involved within the NHS. Because without them, we’d be a bit lost.

The receptionists who make sure patients get to see the people they need to see. The porters who take the patients to Boots and reading every single sandwich ingredients to the patient. To the volunteers who run Bridge Clinic, and provide unlimited biscuits. To the student who helps someone on and off the toilet… it’s literally endless.

So many people don’t know about radiotherapy. So many patients find the process quite anxiety enhancing due to the lack of personable, friendly, understandable and in-date information online coming up to their treatment.

And as I’ve gone through my training I’ve seen some truly compassionate stuff and heard some amazing stories – of all types. The stories from patients that have stuck with staff, the stories that made staff go into the profession and stay when things have been or become tough.

Patients have been some of my best teachers throughout my training, but some of those lessons have been hard.

And I’d love to share these stories with you. Because everyone’s story deserves to be heard. And i hope through reconstructing these narratives together, we can empower our experiences.

A Radiotherapy Story is photo-documentary on kindness and trauma, on team-working, on suffering and on truly living. On being part of something bigger than yourself.

We want to share with you the stories of these people, of the NHS, to celebrate the pinnacle of humanity and kindness. Of life and death.  I hope you’ll enjoy what we’ve made.

http://www.radiotherapystory.com will be launched in 2 weeks time.

And if you’ve got a story in healthcare that you’d love to share, let us know! Contact: smizz at smizz@sarahsmizz.com or @smizz on twitter.

The project is run by me and Harri Slater.

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This is a wonderful way to think about friendship

“the only trick of friendship, I think, is to find people who are better than you are—not smarter, not cooler, but kinder, and more generous, and more forgiving—and then to appreciate them for what they can teach you, and to try to listen to them when they tell you something about yourself, no matter how bad—or good—it might be, and to trust them, which is the hardest thing of all.”

— Hanya Yanagihara,  A Little Life 

This is a beautiful book, but a devastating read. Proceed with caution, feint of heart.

Adventures Ahead: The Lake Moon

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I got my 6th USA work visa approved on Thursday in London and now I can allow my trip to feel real.

It’s been 3 years since I had the real freedom to leave the UK for a long-ish period of time. I’ve been pretty poorly in-general and then clinical placement or school work and money had been other reasons. But I’ve pined for this opportunity again.

When I left America in 2013, it was with a heavy heart – I didn’t know if or when I’d be coming back. And I certainly believed that I wouldn’t be coming back to work, maybe only for a small holiday – if I was lucky. In fact, every summer I get to see feels like a blessing.

Last year when we got to do our clinical elective in Canada and Boston last year, I felt what I had been missing.

For the past 3 years I’ve wandered the streets of Leeds on sunny days and closed my eyes and willed myself to think I’m back in New York. The sun, the heat, the buildings when you look up towards the sky, people pushing past you and back to back traffic in the city center is enough to trick yourself that you could be in NYC. I go to the movies and the smell of popcorn and coffee makes me feel like i could still be in NYC. Sometimes I hunt down all the food I love to drink and eat whilst in the USA to try and muster that same feeling; thai-tea, pangang curries, guc, chips, salsa and good tacos. But they’re all weak immitations.

I frequently have dreams of just walking around NYC and they’re freakishly real.

So I decided, last year, whether I could afford it or not – that I would work really hard to get to spend my last summer there. In the place where I was broken and found. A place where it made me believe in myself, showed me the kindness of strangers – people who I had only worked with whipped around & paid for my medical bills, and treated me like I was part of their families. The country with many people who have helped me believe that I can be and am an artist. Who completely inspire me with their unwavering work ethic.

Just like Barack, all my life, I have been stitching together a family, through stories or memories or friends or ideas. And these guys helped me put it all together and made my stitching stronger.

But now it’s all real, all pretty much official. I’m going back.

I’ve had many years thinking about how if you’re lucky enough to be doing work you love, it’s your responsibility to plan for the day when you can’t do it anymore. And it’s been hard.

I leave Leeds in 3 weeks. I arrive in NYC on the 17th June. We’re going to go to catch-up with amazing friends, go to art-openings, find the best bagel (still not managed it!), eat the best cheesecake on the beach, ride the Wonder Wheel, I’m going to draw, drink those favourite drinks of mine, sit in Williamsburg and complain how gentrified it’s getting, look over the city from roof-top bars and watch the sunset over the East River. I’ll wonder the streets at night, trying to take it all in – so I can continue to close my eyes and take myself back there when i need it the most.

Then we leave the crazy bustle of the city to  go a place that’s pretty cut off from the world. Basically no internet. No public transport once you get off the island by boat. We’ll arrive at Sandy Island – an island in the middle of a beautiful lake surrounded by mountains and tress/forests in New Hampshire. This will be home til September.  The moon sets bigger than my head here. Deer and bear roam, and you can fish or chuck pebbles into the lake from the sandy beach.  And you can lay on the baseball field and watch the milky-way & countless shooting stars. It’s pretty magical. It’s a good place to try and figure things out, to learn how to reconnect with people without having technology blare out for attention at you. You can literally leave the ‘real world’ behind.

We’ll then leave New Hampshire for a quick stop in NYC and then to San Francisco, CA.  I’m excited to run up the hills and skate down them. We’ll make fires on the beach and eat pizza whilst the sunsets. From here we’re going to Napa-valley, CA – drink some wine whilst paddling in fresh water in fields of vineyards whilst the sun sets. And go hiking in Yosemite, CA.  We’ll go back to fly out to Maui, Hawaii (a state I’ve yet to tick off my ‘life-list’ – making it 43 states I’ve visited!). Here we’re renting an apartment on the beach with turtles. I’ll hunt down the best acai-bowls to eat, and we’re going to hike some volcanos, surf and relax on the beach after the relentless work this past 3 years has taken.

Then we’re flying back the Seattle, WA – I’ll be re-connecting with some of my friends who are artists working on really cool social projects. And We’re taking the training to Vancouver, Canada – then back home!

And I CAN NOT WAIT. 

I’ll be chipping away at my bucket list – now re-named ‘the life-list’, making art, helping people with their projects, writing, taking photos, and working on myself, helping others. I’ve a million ideas for new projects, but I’m trying my best not to start anything. For a little while, at least.

Follow along if you like!
Life can seem so challenging sometimes. It’s a scramble up a rocky cliff that feels like it’s two grabs away from a landslide. But we’re not meant to do it alone. And we don’t have to do it all at once. Take time to take care of yourself and look back to see just how far you’ve come

“Time is space. You are moving through that galaxy. Wait for the stars.” – Matt Haig

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The things I’ve learned from a broken mirror

Saving a life doesn’t change the world, but for that person, the world changes forever.

I’m right at the bittersweet end of my 3 years of  BSc Hons radiation-oncology school training. Assuming I pass the last few things, in 3 weeks I’ll be technically allowed, once my HCPC registration and license and indemnity insurance comes through, to plan, care for and treat people who have cancer with radiotherapy. Which is really scary. I will be responsible and liable by law for the safety of my patients.

And yet, the 3 years has gone past in a whirl-wind. It has been both long (no thanks to working clinically all through the summers) and extremely fast. Energizing and completely ball-breakingly fatiguing. A mixture of: I’m not ready to be qualified yet to I just want to do the job, already! Slowly ticking off endless assignment after endless assignment. Slowly being able to reflect upon how far we have come.

And now I write this post. With a cool raspberry lemonade in one hand, I stare out of the window with the sun in my eyes and feel kind of relaxed for the first time in a long time.

Doing this course was a massive risk for me.

I had nothing and everything to loose.

Here’s what I’ve learnt:

A few years ago (y’all know the story), my original life had become broken by ill-health and everything changed.  No one should ever underestimate the lack of quality of life living with horrible, endless, chronic pain and fatigue offers.  And as a result, my old life just didn’t fit in the same way anymore. So, after drawing people wanting to change the NHS to make it better using their health experiences, and this personal medical experience of mine – I decided to give up my planned life of being a full-time artist and retrain in healthcare (with the perspective of an artist). This was because I needed to get closure, to understand the human-body, to gain some control from this knowledge, and a routine – to try and ease the fatigue (that turned out to be a LOL – there’s no rest in healthcare): but most of all, my biggest motivator was  to try and make a difference and really care for others.

This was because the NHS was the first place I had been shown any real true kindness  from complete strangers when I was at my most weakest. I felt (& I feel it even more now than ever) this pit of gratitude at the bottom of my stomach when I think about the care I have been given & continue to receive – from everyone in the NHS, not just doctors & HCP but to the students, receptionists and porters, ect.

From my GP (the awesome Dr. Marco Pieri) who would say we’re friends. And in the beginning, I thought that saying we were friends was weird.  I was suspicious. It’s just his job? I knew nothing about him.  But as I grew older with him, and cried on him when I was at my lowest (i don’t ever cry in front of people), and moaned, and repeated the same endless complaints at him -much to his dismay – he built up this incredible knowledge about me as a person – not just what was wrong with me. He asks me about my work, my life in general and about my fears. He asks me what I want to do in regards to my care and he gives me lil’ prep talks (even unsolicited NHS job interview advise) by telling me to keep going and just to live life to the fullest (fo’ serious). He was one of the first people I told (by chance) that I got this awesome fully-funded PhD scholarship. He stopped me from jumping around from random GP to GP, because I didn’t understand the importance of continuity in care at the time. I feel like he intrinsically cares – not just for my wellbeing – but for the whole population of Doncaster after discussions with him on his passion for improving life expectancy & outcomes for the Donx to meet the rest of the population (thus his role as a clinical lead in the Doncaster CCG).

It turns out that he is in fact both Physician and detective, and through time, he also became both healer & friend. And through experiencing a lot of his kindness, his humor, his knowledge, his time & care – I felt like I needed to return it.  I wanted to be that person he was for me – for my patients; to make them feel cared for and valued. To not feel insignificant when you’re at your most vulnerable.

What I’ve learnt is that patients have been my best teachers, but some of my lessons have been painful.

I  have learnt from their  incredibly life affirming stories of hope, humor, achievement and tragedy and heartbreak. There was a woman whose volunteer hospital transport driver turned out to be her long-lost niece – found and reunited together through daily drives to & from radiotherapy treatment. I’ve treated gold-medal winners from the Olympics 50 years ago, pilots, magazine publishers. I’ve seen people go home and back with nothing but the clothes on their back- for 7 weeks, heard stories of amazing neighbours and learnt a lot about people’s pets. I’ve heard horrific stories that just needed to be told and heard – of death, loss, and abuse. Every day is a day where I take at least someone home in my head. Some fade away, eventually. Though 3 years on – there’s some patients who are etched onto my mind and I don’t know why some really stay with you.  I stopped checking up on them post-treatment because quite a few have died since- and it makes me feel incredibly sad. These people who we often just shared 2 or 3 weeks together at 10 mins + at a time become significant to me. And  I hope I never loose this into qualification.

 

It will be weird not being with #teamleeds, every day; My friends who we’ve gone through and seen a lot together. These stories bound us together. They’re like brothers and sisters now. I imagine this is kind of how joining the army feels, but instead it’s a healthcare course.  It will be weird not joining in on a random Facebook conversation, not having to panic about the endless deadlines and  unclear learning objectives. My closest friends (most of them younger than me) on the course have taught me a lot about growing up. I’ve managed to have a second ‘coming of age’ experience through being good friends in their journey. We’ve travelled when we could together, hosted parties and feasts of food. Shared and supported each other through tragedies, deadlines, successes and the crazy profound things life throws at you. I am completely in awe of these now 21 year olds who are mature before their years. And I think about how their strength is true testament to how I’ve managed to get here – 3 years on. At the beginning of the course, we said that we would drag each other through to the very bittersweet end. And here we are, 3 weeks to go, still dragging each other. I’m pretty sure I wouldn’t be here now if it wasn’t for them, egging us on.

Then there is the staff at the place where I’ve trained, they have been incredible. They’re passionate about education and patient care and safety. They love radiotherapy. They’ve shown me time, enthusiasm and exactly what being a compassionate healthcare professional should look like. I’ve learnt how to ask questions, without being too leading. I’ve learnt to hear for things not actually said, but implied, by patients so that I know if they need more extra support. I feel incredibly indebted to them for their knowledge and time (and patience!). I hope that we stay friends at the end because they’re such great fun people. And I can’t thank my tutors enough for all of their guidance and knowledge in helping me shape me as a healthcare professional!

What I’ve learnt in my Healthcare education (both officially and as a patient) is that everyone in the NHS has a reason to do what they do: It’s almost never about money or our quality of life. It’s because we can make a difference. All any of us ever want to do is to make other people’s lives better. Sometimes it’s life-changing, sometimes it’s something much simpler.

Sometimes things don’t work the way we should. The system isn’t perfect. Neither are the people in it. But it is fundamentally decent and good and whole. That’s why I am absolutely committed to the principles, to the ideals of the NHS. I think it’s just about the best thing this country has ever achieved. It is remarkably robust, but the pressures facing it are immense, and there are few easy solutions. But we – the people of the NHS – ALL STAFF- are absolutely committed to it.

What I’ll always remember from my education in radiotherapy – and that crazy 3 years of unpaid labour – will be the stories that made these people into NHS.

Being a radiotherapy student has given me a lot of perspective and new skills I never knew I could do.  I’Ve learnt that whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

Life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES.

And life can be incredibly short. So see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes,  and never, ever start smoking.

Thank you to the whole of the NHS for your love, and kindness, and education. It turns out studying Radiotherapy turned out to be WAY more than just a degree at the end. 

I have learnt, through pain,  that I am more than my pain, more than what was built & burned, more than all I’ve lost. You will get to build again. And if you’re lucky, you’ll get to share this adventure with the people who’ve helped you.   Remember it ain’t always about where you start, but it’s about where you’re going and end up.

To the last 3 weeks!

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0-5.jpg *Hope I pass!*

 

 

Break it down, build it up, make it better around the world.

I’m now officially in this incredible and super lucky position of sitting across multiple disciplines all at the same time; i straddle across being an artist, a designer, a healthcare professional, a researcher and a patient.  It’s super exciting but it’s also incredibly scary – even overwhelming.

I’m kind of unique in this respect.  There’s not that many of us hybrids rocking around in healthcare, or who are “out” about it,  but I think that’s going to change dramatically over the next few years.  Healthcare is building up towards a renewal, globally, to change from being just this service where you get things sort of fixed – and that’s it – discharged.  But it’s going to change into this service that is adapted to personal needs; both preventative and continuous care – in different models.  That the healthcare education model will provide art & design training in it too – that it’s not just all numbers and science – &  proper useful & enjoyable reflective practice training. It’s going to experience a (probably very slow but) beautiful renaissance – where things will be designed purposely with and for the user; whether that be the patient/citizen or the healthcare professional, using stories/narrative and lived experience and critical reflection in the process. That healthcare professionals have the tools to design things themselves too.

Whilst I am obviously very passionate about combining all of this together I attended a talk  last week by Elizabeth (Lizzy) Scott on the Femcare information strategy (Lizzy is radiotherapist leading this project) that’s undergoing within the radiotherapy department I train at.  I originally attended due to my passion for better patient information, but what this talk showed me was exactly the reason why it’s so incredibly important to think not just in terms of information; but the design and presentation of information and equipment is also equally as and incredibly  important in being able to enhance quality of life and treatment experience and compliance.

This Femcare information is aimed at patients who have had a radical course of radiotherapy treatment to the pelvic region. The side-effects of this treatment can have massive quality of life issues in the future for these patients, especially when it comes to their sex-life.

I believe, in general, we don’t talk enough about the effect of cancer on peoples’ sex lives and relationships, and their relationship with their body. Change goes deeper than the physical. It’s emotional. It’s psychological. It’s part of who you are. We know embracing the changes in intimacy can be one of the most challenging parts of feeling ‘you’ again. Butt issues like these can be – due to the very British nature of us – difficult to broach the subject – we may just brush it off – downplay it, really don’t want to talk about and feel embarrassed. We maybe really open to discuss it. But everyone is different and we need a strategy to reflect this.

The correct information early on is incredibly important in being able to facilitate better quality of life later on for these patients.  In the talk, we were given some leaflets – which had some pretty intense diagrams of how to use a clinical dilator, and of course a dry pastel rendition of some flowers  on the front to represent femininity? – how imaginative.

If you’re able to move past this leaflet, what comes next is the the dilators we provide – which are so clinical and intimidating and cold – as pictured below:

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I can’t imagine what a user group would say about using these after treatment – whilst I can’t stress enough that they’re extremely very valid and very important – and i’m glad we do provide them rather than nothing. It makes me think the people who designed them didn’t really *think* about the user – just the use of them.

Lizzy discussed how she – too – wanted to redesign the Femcare strategy,  including the leaflet and had done some research into finding better dilators that may be less intimidating but do the job. Her efforts were rewarded when she found http://pleasuresolutions.co.uk/  – a  company with an ambition to help people reconnect and explore new realities after cancer, sexually. Whose products are specifically designed with clinicians and patients and with Japanese production as pictured below (made from a gentle Unique SoftTouch material with anti-dust coating

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I’ve never seen such an obvious need for redesign and rethinking with empathy and the end-user than in this case.

Imagine what the change in outcomes and perceptions would be if we in the NHS used the latter, widely, in practice. I suspect it would only be much more positive with more compliance.

What all this reveals to me is that we – as HCP and as artists/designers/thinkers/researchers – should use our superpowers of empathy and prototyping. Underlying both of these is a commitment to learning — learning about people’s needs, learning through experimentation and trial, and arriving at a solution through  discovery.

Creativity isn’t being used to its full potential in healthcare today. There are many other creative disciplines that have a critical role to play too. It is critical to create the conditions in the healthcare industry for designers/artists — along with healthcare ‘natives’ — to put the disciplines of empathy and prototyping into action.

When sharing my thoughts with the department (when I was asked to, lol) I said we make children’s hospitals all more accessible and aesthetically pleasing – why don’t we do that for the general population because it’s obviously do-able. They instantly jumped on, “well they’d have the money to do that”. But the fact of the matter is – if you’re spending the money on doing something anyways (as they were in this instance), or paying for clinically intimidating equipment that has obvious potential negative user-implication – it is either cost-nutural or at least more cost effective in the long-term. We need to stop blaming funding as a reason not to do something, we need to see past the short-term. Co-production/design can help us save money in the long-run through impact and investment. 

I feel like I am just at the very, very beginning of this journey but I am committed to this change. I believe in the power of creative practice — people-centered design/thinking — to radically transform healthcare.

Creative practice has the power to:

  • share and curate compelling stories that reframe issues.
  • I have the ability to synthesize complexity down to actionable challenges.
  • open up real collaborative practice
  • reimagining tools that enable rather than disrupt the healthcare workflow and empower patients/carers
  • advocating for the patient through new services, communications & products.
  • and much more.

We’ve got far to go but here’s my first and most important challenge as this creative hybrid healthcare professional:

1# People feel understood and cared for.

 

I can’t wait to see what Lizzy does to re-invision and re-invigerate Femcare to help enhance patients quality of life. Go Lizzy!