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:

amielle-care

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

Iroha-Midori.jpg

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!

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Designing Healthcare through Art & Design.

Medicine develops so fast, especially radiotherapy. But one of the areas we’ve not caught up with and developed  is the design of healthcare. I know what you’re thinking. What’s art & design got to do with anything in healthcare, really? And if you’re thinking this – this basically uncovers one of the reasons why design is an issue – because no one is thinking about it.

Last year I made the first Radiotherapy Patient Information Smartphone app. RADcare. Just me. I drew it out on paper – big sheets of A3, pages and pages – in the library and in Starbucks, I read paper after paper on patient informational needs, scoped out what is already out there, thought about the pathway and critically reflected my time as a patient and doing first-day chats on clinical placement. After being a patient (not a radiotherapy one) I’ve always felt that patient information – from the letters that you get from hospitals with appointments on, to medical procedures  to be flat, lacking in information that you actually need (Like where do you check in? ) and just depersonalised. If you actually get anything at all. Visually, they’re not very good either. It’s no wonder most people don’t read the material we give them. It looks about as enticing as getting a filling done at the dentist.

Then there’s the issues of – how one leaflet can’t really fit all. It can’t offer all the information you might want to know, it may also be in a format that isn’t accessible for people – like literacy is an issue.

And yet the government wants us to be more proactive with our self care – using the internet to try and gauge what we have is important enough to visit our doctors. But here in lies another patient information problem. We don’t know how reliable websites are for healthcare data and information. So when a patient, or a family member/service user, wants to find out more information about their treatment – they end up in a sea of vague, out of date, in accurate, non-protocol information.

So I designed this prototype smartphone app.  I wanted it to be everything current patient information is not. Accessible. Even a bit cute. Detailed – but you have a choice on how much detail you want to access. And colourful. A mixture of formats – from animations, videos and text. And most of all – more personable with a bit of heart. I wanted to break all the corporate rules.

Whilst it’s so important to do your user-research first, and make the UX design user-friendly first before design aesthetics – I prepared it with research and aesthetics first. I knew that the coding stuff (I need someone to make it work better than my amateur coding can do) can be fixed later.

As Bon Ku discussed in his interview on the importance of health care design, he states that “most of us don’t realize that everything in health care is design.Someone designed the pills that we swallow, those gowns that we wear in examination rooms. But I think most of it’s designed poorly; we too often will design mediocrity in health care.

And Ku hits the nail on the head perfectly. I’m passionate about using art processes in innovating healthcare and it’s design away from mediocre.  I jumped ship from art to healthcare to use my passion of trying to eradicate social-injustices and inequalities to try and make the patient pathway better. I know, from my work with NHS England and other healthcare organizations, that creative methods – from drawing patient’s experiences, and filming their life – are great and affective ways to make the patient feel heard and valued – and as a result – you produce something with much more worth and use. Because it was built with the experience of the people using that service/prototype/leaflet.

I think part of the worry with using more creative ways of designing healthcare comes from healthcare’s obsession with measuring outcomes. In a scientific way, too. This culture needs to be adapted – not just for innovation but also for our practitioners whose continuity of care doesn’t get acknowledged. That extra 10 minutes spent with a patient – with no boxes to tick to get measured – but it made a massive difference for the practice and the patient.

But how do you evaluate the use of creative ways effectively? How do you measure them? Is small-scale testing enough? It’s a mine-field.

So I hope you’ll help me. I wanted to try and use my app as part of my dissertation — just so my spare-time project gets some academic acknowledgement. I’m doing a design evaluation of the app – and I’ll be putting key-parts of the design online with some questions and one-on-one interviews. If you want to help me evaluate the design — i would be extremely grateful.

If you want to help me – I would love to hear from you! – holla at me on Twitter, or by email smizz@sarahsmizz.com

If you have any cool articles about heathcare & designing/art – i’d love to know about them too.

And if you’re passionate about making a difference, or about art& design and health care too – Let’s share an email or grab a coffee.

Here’s a taster of the app (My favourite but is skin-care guide) 😉

 

LOGO

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home-navigationpage

app directions

department

whatsradiotherapy

lookingafterskin

 

What does a radiotherapist do and how it’s given me life advice for the future #worldradiographyday

I often get asked, “You *just* take x-rays, right?” When people ask what I do and I say, “Radiotherapy”. (I do – in fact – take some ‘x-rays’ but that’s not my main-specific role).

Sometimes they know a lil’ bit more and ask, “Soooo, you *just* set up the machines?” (The machines are these 1 million pound things called linear accelerators). Like that’s all we do, “set-them up”.

But I love telling people what radiotherapists do and i love it when people want to know more. We’re the somewhat misunderstood colleagues of the radiography world. We’re not radiologists – we don’t interpret your scans and diagnose from there, we’re not diagnostic radiographers you see for an X-Ray when you fall down the stairs.

We’re the people you seem to only learn about after you’ve seen our other radiography colleagues and if you have cancer (or some limited benign conditions) in yours or a loved ones life. Some people luckily have no cancer narrative in their past and come across our profession from twitter/internet, others from university prospectus books, their love of physics and imaging. Occassionally if people are on it, we get some national coverage.

Radiotherapy is a cancer treatment that about 40-50% of people diagnosed with cancer will have as part of their treatment. It can be used to reduce symptoms, and most importantly: pain. It’s often a curative, cost effective, and often non-invasive treatment.  And how we do that is by generating a plan of treatment.  That plan aims to deliver a high dose of radiation  over a series of fractions (days) (generated usually by high-energy xrays [photons]) targeted at the tumour extremely precisely, and any microscopic disease (GTV*, CTV* & PTV*) and any lymph involvement as specified by the doctor.

We don’t just “press a button” or “set up the machines”. We have 3 years training specifically within oncology to begin with. We learn all about cancer, radiobiology, cells, immunotherapies, chemotherapies, surgeries, staging systems, global health, prevention, end of life care, person-centered-care, psycho-social issues, financial implications, ect. We learn  all about radiological physics and imaging and some basics on imaging engineering. We constantly keep up to date with world-class research. Then we spend months & months on clinical placement, for 3 years, including all summer, critically reflecting, learning to effectively collaboratively work together, learning how to deal with life and potential problems and techniques and protocols specific for your center, specific for each person and their cancer. Basically, we’re properly specialized in clinical radiation oncology.

Pre-treatment

We work in ‘pre-treatment’. Here is often the first point of contact that the patient has with a radiotherapy department after being diagnosed and a course of radiotherapy is prescribed. We try to put the patient at ease, give them a first day chat letting them know what we will be doing and any questions they may have, let them get to know us for a bit, and we visually and through asking questions assess how the patient is and any needs they may have. Sometimes they have to have specialist immobalization made such as masks, and radiographers do this too.

We figure out the best position for their treatment, and make sure its as comfortable as it can be to withstand weeks of that position, whilst ensuring its reproducible and stable. We generate all the ‘set-up’ information for their treatment: their position, making sure they’re straight, not rotated, that our set-up position is in a stable location, where we decide to put some ‘tattoos’. Always assessing, always analysing. Then we do a planning CT scan – much like diagnostic radiographers would with the patient in this position. It always has to be a CT (though we often fusion images together such as PET & MRI) as CT gives us tissue density to plan each beam/field effectively.

Planning

From here after the image has been contoured (Organs at Risk [OAR] & tumour being outlined) by the doctor (some places the radiographers do it too) radiotherapists plan where each field goes. They have to get rid of any hot spots, make sure all the tumour and surrounding margins have a 95-105% dose homogenous dose coverage whilst avoiding near by healthy tissue. It’s not the easiest task and each persons body is completely different. How exciting right?

Checking & revisiting

From here that plan goes to physics to be checked, then back to the doctor. Some of these plans will be discussed in Multi Disciplinary Team meetings with doctors, radiation oncologists and radiologists, physics and radiotherapists. Once satisfied, the plan and set-up sheets, and prescription gets another double check – by 2-3 radiographers. This – from start (CT planning scan) to fully planned and checked is about a 2 week process.

On Set / treatment

Then it’s time for the patients first official day on treatment. We check everything, look at the wedges, the monitor units, think about where the patient will be on the bed and the angles of the beams. Many more verification techniques happen here. We get the patient on the bed, after giving them another first day chat and looking after their skin and side-effect advice, guide them into that same position, make sure they’re straight and not rotated. Use those tatoos and set-up sheets to guide us. We check SSDs, positions, angles, we take images to verify and image match. This is that bit where we ” *just* set-up the machine”. Once we’re happy with everything and again double checked everything from patient ID, and RR numbers to monitor units and angles and beams and fields and position and much more. We press that button and deliver that life-saving treatment.

But what’s just as important as checking our images, checking everything else is correct and safe. Is that our patient is OK !!

Treatment day is another huge milestone for our patients and their loved ones. Often, because radiotherapy is so under advertised and unknown about, or the media portrays it wrong and factually incorrect – our patients can be really nervous/anxious. What is this Linear Accelerator? What exactly DO WE DO?! Will it hurt? Does it burn my skin?

This is where the radiotherapists great person-cenetered skills come into play. It’s my favourite part of the job. It really makes my day when you’re able to establish a rapport/trust with one of your patients and make them feel better/more at ease. Often it’s just letting them tell you their story. It’s often been a difficult path to where they are today. Months and months of being undiagnosed with symptoms that took ages to pin-point. A bad chemotherapy reaction, trying to juggle work and picking up their kids, the 2 hour drive to the hospital from their house, ect. It takes time and empathy to be able to get this person to trust you and your team. You get to share your knowledge to put their worries at ease. And this is the best part of the job for me.

Unlike most of our other radiography colleagues, we get to see our patients every single day for their treatment. This could be every work day for 7 weeks! That’s quite a long time. It’s exactly the reason why I specifically chose radiotherapy. I wanted a healthcare profession where I could get to know my patients. A lil’ bit like a GP has the potential to do so.  How that continuity of care enables you to easily see any change in the person who might not let you know something is wrong. How each day you peal another layer over, you slowly find out who they live with, do they have any pets, their intricate details of their lives, honeymoons, holidays, work. I’ve treated gold-medal winners, people who run magazines, who owned planes, who volunteer their whole spare time for the most vulnerable. You hear some stories that will stay with you for the rest of your life and there’s people who you’ll think about months later. There’s some stories that you feel in the pit of your stomach, and there’s moments of pure joy that nothing will compare to. You’ll learn these details and it helps you make some assessments. Is this person frail and has no one at home to look after them? Can we get them some clean clothes? Can we refer them – ask if they want to see someone for specific type of support (complimentary therapies/financial advice ect). You can figure out if they’re following your side-effect advice or not. There’s a lot of potential for radiographers here to make a huge difference to someone, and i love that responsibility.

Service Improvement & research

And then there’s another cool thing radiographers do. We can use our practice to implement service improvement changes or undertake & create world-class-life-saving research. I see the future of radiotherapists moving more into preventative, on-going-care and recovery/post-treatment care.  I’m so passionate about us helping to support our patients and their loved ones. The health-gap is going to be one that continues to grow under our ever growing unfair and unequal society. And cancer – the diagnosis and the survival-rates of it – is a product of the gap. I believe we will see more radiographers moving into this discourse and helping our patients live a better life – during and after treatments. Survivorship can be so rocky, so it’s a given that with all our specialist knowledge that we should enable to help commission, produce and create services that can support our patients.

Being a radiotherapy student isn’t easy. It’s very full time, there’s a lot of different skills to master, juggle many types of work from clinical knowledge to academic stuff; you have to become a commealian – you adapt yourself to which ever team personality you’re working with. You need to master time management (I’ve not fiigured this out yet). I found I take longer to do the more technical stuff – I believe this is because as an artist I’m not used to thinking so routinely and logically. I’m having to retrain my brain – but I love the challenge. And after those great weeks you have on clinical placement, when a patient is so thankful, when you put someone at ease – made them laugh. It all some how feels worth it. You go home with a warm fuzzy feeling. It’s kind of indescribable. By the end, because of the continuity of care – it’s like you’re treating old friends.

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 as I read somewhere: 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.

HAPPY WORLD RADIOGRAPHY DAY.

The Heart of The Matter: Hope.

About 2 weeks ago I found out that I’ve been shortlisted for another award, this time for — “Most innovative student-driven digital tool” — for the design of my *future* Radiotherapy Treatment Patient Information App – “RADcare”. And I’m still blown away by the shortlist. I don’t think I’ll win, but this definitely feels like one of my most proudest moments of my life so far, and I don’t know why? I’m just so honoured and surprised by being shortlisted!

My story is one we can all relate/resonate with. I got stuck. Like, really stuck. I encountered an illness I never saw coming – and for the first time in my life – felt really lost, and out of control.  At such a young age too, in the middle of building my artist career, and shaping the rest of my life. I felt so misunderstood. And when you’re not understood, you feel almost worthless. Dealing with these feelings on top of very distressing symptoms whilst trying to continue to run your life as normal as possible is actually really hard.  I had experiences with the healthcare system – both amazing and poor. As a patient I often felt powerless, stupid, a hindrance — and ultimately — voiceless. This lead itself to personal anxieties. Sometimes I felt like no-one cared. (But this was not true at all). But also I got treated every-now-and-again-like family. Like an old friend, with kindness, love and care. I’ll never forget those moments. And I soon realized that, that’s all I wanted to do; To make people feel cared for & important, and needed, and even loved. And as with my art practice, all I’ve ever wanted to do is make a positive difference. To help people. To make people think, think of the injustices, to act upon these inequalities, to feel better, to make the world a better and more just/equal place. People are struggling all around us. Every single one of us has something we’re struggling with each day – although the degrees of struggle are massive.

People need people, and they need truth, heart & hope. Authenticity wins, every time.

I look to the world around me, with this continuing experience in hand. And I see that we need coffee shops, sunsets and roadtrips. New & old songs, planes, trains and food. Fast internet connection & Twitter – but most of all – we need other people in our lives.  And at some point in your life, you will need to be that “other” person to someone else who needs you. You will be their living breathing, screaming, invitation to help them believe in better things.

We do not know how long we’ve got here. We don’t know when fate will intervene. What we do know is that with every minute that we’ve got, we can live our lives in a way that takes nothing for granted. We can love deeply. We can help people who need help. We can teach our children what matters, and pass on empathy and compassion and selflessness. We can teach them to have broad shoulders. And that’s all I want, really.

My friends say that I’m a “Smizz of all trades, master of none” – because I go out of my way to learn new things if I can’t understand it. That’s why I do work in all areas, from art, to printing, to photography, to web and app coding and designing – I’m very well read in political & economics too – and now radiotherapy/healthcare.  If you’re unhappy with something – don’t wait for someone else to make the change for you.

So every encounter that I have with a person at work (colleague, friend, patient, ect), or outside work, I try to make them feel understood, AKA – valued/respected/dignified. 2 days ago, I did a first day chat with a patient & at the end I said I was a student – and she said, “That explains why you’ve spent more time with me & listened to me.”  Time is extremely fraught in all of our lives, but we must make time to try to understand people and their journey.

So that’s why I decided to make my Radiotherapy app (RADcare). To hopefully help patients and their careers understand what’s going to happen, be able to feel like they can take more control by knowing what’s going on and have good, coherent, interactive and personal information covering all aspects of their radiotherapy treatment journey.  I hope that by all of us having a better understanding, we can make time for the really important things. I hope the app will be really useful in the future, and really helps patients and their loved ones going through their journey, a better – less stressful – journey. (It’s worth pointing out here that the app is just an addition to a service & MUST NOT be used in place of information contact in person with healthcare professionals).

Living with an illness, or after, is really, really hard. Normal life is never normal again.  It makes changes – both psychological and physical – that you had never anticipated. But it’s not all bad. I now feel more empathetic to other struggles than I ever did before, I cry more than ever at injustices (not on you- so no worries), and I know now that time is what ever you make it – the days are long but the years are short.  It’s not about your grades, or your clothes, or car, or house. It’s about being with those who love you, doing what you love, and trying to be the change we need.

I hope I can bring big heart to every thing I work on. I especially hope I can achieve it with the app. Life is hard. And I wouldn’t have got here today – feeling extremely loved – without the support of all my amazing friends (you guyz!), course-mates, my mom & bro, my colleagues (NHS, uni, art, Doc/Fest- ect), my doctors & other healthcare professionals and everyone else.

Hope you can help me evaluate the prototype app soon! Much love, Smizz!

Explain A Patients Reaction To….

I look back on my life so far, and I ponder for a moment and wonder how I’ve got so far (yet also so far  to go). I reflect and think, yo, did that really happen? That was AMAZING! Or that was pretty horrific, why didn’t I see the difficulty at the time. Why was I such a dick, or why can’t I be as motivated as I was back then?

Tonight I’m writing this blog instead of doing revision for my last and hardest exam of Jan. I probably should be using my time much more wisely. I’m super tired and I feel like I should be asleep right now. I feel like my brain can’t take anymore information today – but it is indeed a revision past exam question which has made me want to write this post.

The said question in question is, “Explain a patients reaction to a cancer diagnosis.”  – it’s only worth 3 marks.

We’re taught that the patient can go through a myriad of reactions, and neither of them are time sensitive. They could happen instantly during the breaking news, during or months after treatment. We’re told that in the beginning most people are in denial, “There must be some sort of mistake?”  “Pretty sure that this is wrong, it’s not happening to me?!”  Some patients never stop being in denial, most come around. Guilt. Responsibility for others (What about my family/kids/parents what do I tell them?). Fight spirit. Depression. The options are really really endless. Everyone deals with everything in their own way.

This question brought back memories for me. I thought about when I first got told that it looked like I had a “Lymphoid Malignancy”.

Remember this? I bet you do:

screen-shot-2012-09-02-at-21-25-59

I still – to this day – remember that day with crystal clear exactness that I’ve never experienced with any other memory.  I think its surreal-ness is what makes it stay with me.  And I think the above exam question – that the patient will also have the most crystal clear memory too.

Here’s my reaction to the above news. I feel like I want to share it, because I still – to this day – think about it daily. I think about how weird it was. Imagine being told you could have a fatal disease, 10000’s miles away from family & in the presence of your work boss? (My boss is now, as you can imagine,  1 of my closest friends). How disjoined my journey was afterwards. and the amass of emotion and questions that seems to have manifested itself into a whole new career venture. Pretty sure not every patients reaction to a cancer diagnosis is – I WILL BECOME A MEDICAL CANCER ZAPPER RADIOTHERAPIST RESEARCHER PERSON! But here’s part 1 of my crazy story.

——-

After being asked what felt like a bazillion questions  such as, “You’re an artist, do you think you could have accidentally poisoned yourself with chemicals in your art materials?”, a super  thorough  physical  (much more attention to detail than we do in the UK) and some tests & bloodwork, I sat in an examination room with a pretty good looking doctor in a white lab coat (in America, Doctors really wear them – with their names on no less!?). I was wearing a broken gown, backwards. I felt really unprepared. I remember thinking that I wish I had shaved my legs better, not just up to the knee.

I was also sat in the room with the doctors colleague (who was also a qualified haematologist dr) who also happened to be a friend to my boss, and my boss from my American summer camp job.  I usually hate people going to the doctors with me. In fact I do all my doctor-y, hospital stuff alone. I don’t know why. I guess I don’t like people being present when I tell an almost stranger  about the real pain and symptoms I try to hide or down play in real life. I ultimately don’t like feeling vulnerable in front of others. But both – the doctor friend & my boss, asked if they could be present during my consultation and who was I to say no? After-all, it was them who made me go and who were paying for it.
So, here I am. With my boss, of all people, being told that it looks like cancer. I remember how the doctor built up to it. He gave me the positives first. My bloodwork looked pretty good, normal. My boss, sat behind him against the adjacent wall wearing a thick yatch-like-J-Crew meets Old Navy cardigan, but facing me, put 2 thumbs up in the air with an American style movie smile. I smiled back acknowledging. In my head, I was about to curse that I knew this was going to be a complete waste of EVERYONES time & money. That it was indeed a virus or just “all in my head”.

Then the doctor said,”… but it looks like Lymphoma… a cancer that effects mostly young people. It’s really treatable, and easy to fix. It’s just it could be time sensitive.  If it’s aggressive then we could have a problem.” I looked straight at my boss who had no clue how to react, thumbs still sort of mid air between celebratory and disbelief. I remember kind of swinging my legs under the chair like a child, sat on my hands. Feeling kind of shoulder shrugg-y.

The doctor recommended me to go straight home back to the UK and get it sorted (you know, cuz I wasn’t insured for Cancer. Bummer.) All 3 of us left the examination room, went in a lift and left the hospital without speaking a word.

The day was over-caste. It began with heavy rain. I was wearing my super cool raincoat with a picture of Colorado on the inside lining and my multicoloured grey H&M wool jumper.  My boss tried making me eat a breakfast burrito. I wasn’t hungry & I also had stolen 2 bananas from the dinning hall before we had left for Boston. I left the uneaten burrito in the car.

We leave the hospital grounds, get to the road near the parking-lot & make small talk about parking in Boston & payment for parking. My boss’s friend-doctor and my boss  wished each other good bye. I thanked the doctor guy. As soon as he was gone, as I watched the lift doors shut, my first words were – whilst staring at the bottons with floor numbers on in the lift in the car-park: “You know that I’m not going home, right?”
The shock of hearing that I might have something that could end my life – especially if time sensitive – was something my mind couldn’t really grasp. In denial didn’t even come close.  I’m not even sure that a “life”, as a seperate entity really exists. Maybe I’m a kid who lives with their mind racing ahead into tomorrow more than I should, but that night I couldn’t stop thinking about all the plans and dreams that I had that might never be.  I felt as if I had wasted huge amounts of time in my life, and that I had to have a second chance immediately.

I convinced my boss to divert our route via an artshop where I spent exactly $38.38 cents on a bunch of my fav drawing pens and sketchbooks – I also pretended to be a student for 10% off. Later on, we stopped off at a bookshop on our 3 hour drive back to camp. I mean, how could she deny a dying kid their last wishes? I bought a pretty great art magazine, and my boss bought me an iced-chai-tea-latte from Starbucks. We talked about pretty much everything else BUT my potential impending doom. When my boss brought it up, I was pretty blunt that I wasn’t going home.  She would say, “Well, I don’t know about that Sarah Smizz.” I would have no discussion about it. I felt like if I did have cancer, that another 6 weeks wouldn’t make much difference, and  if I didn’t have it, then what a waste of everything. And then that if I did have cancer I was going to endure some hardships  so I wanted to make sure that I had to live my life hard and fast. I thought that this, after all, could be my last summer in the USA. Ever. Last summer ever.

That was part 1.  Other posts reference my crazy disjointed journey of illness and let’s be honest, I will probably write about it again.

Fast-forward to right now. I think we have to live fast, stay lucky. Try to be better. Work harder. Always put family & friends first. Money is circulated. Time is spent. There’s never enough time to learn everything. oH-wEll. Mistakes are made. Lessons learnt. Collaboration is key. Always be ready for an opportunity even if it doesn’t arise. Ask for help when you need it. Sleep is GOD. Illness is a bitch. It will rob you of everything for a moment – whether it’s the flu, gastritis or cancer. Stay true. Smile. Be cliche. Instagram.Help others.

I’m left wondering if my story above would have got me 3 marks in my exam?

Trying to Help to try and Fight The Good Fight!

race4life13

 

Hi friends!

Let me tell you a story.  Just over a year ago, I read “What I Talk About When I Talk About Running” by the awesome Haruki Murakami, which inspired me to want to challenge myself to run a half-marathon. I made a tumblr blog, and bought a book on how to run a Marathon for non-runners, and even bought some proper work-out-shorts. I was deadly serious about it. The book convinced me if I had the motivation & strength to do that, not only would I be healthier and fitter but also I would miraculously become more organized, and get a way bigger drive & work ethic. But I never found out if it did that.

I fell ill with the same thing I’m still trying to shake off, & just participating in life in a normal capacity feels like enough of a work out. But! It IS still something I want to do by this time next year.

So in true-baby-steps, I’m doing the Cancer Research UK Race for Life again! In part to get me to my challenge that’s delayed by a year, but  mostly  because I want to run & raise money for everyone who has ever been affected, in any way, by cancer.

It’s been a tough year for me, but my whole perspective has changed because of it. I’ve never felt more loved in my life than I do now,  and I’m constantly humbled & grateful to be loved & supported by you my amazing friends & mom & bro.

It’s been a lot of needles, needles, needles, horrific burning & vomiting allergic reactions to MRI & Angiogram dyes, spontaneous nose-bleeds & bruising, painkillers that resulted in days of lost memories, a-everyday-all-the-time feeling of  being hung-over & jet-lagged at-the-same-time, bone ache, drenching night-sweats & 14 hour sleeps a day.  I am not sure about all that will come next. But I do know emotionally I have been changed. I find myself being hypersensitive to others struggles, both in health and in life in general. Every single experience is heightened. I notice things that I never even saw or cared about before. I’m constantly inspired by you & others to be a better person.

People have shared with me so many personal stories of fight. My mom had to fight it in 2000, some of my friends relatives have been diagnoised with this terrible & unjust disease recently. And now it feels even more personal. Even though it’s not. But it is.

Friends, this is for my mom, my family, for you, your moms, your family & friends and everyone elses friends & family. F___K Cancer, y’all. I hope you will help me raise some money for Cancer Research so that they can continue to help to provide support & care  to those who need it, & provide research into life saving stuff!

Everyone who donates, will receive a drawing from me. (Although I suck at mailing them out!). Even just £1, the smallest amount you can donate, is by no means the least important.

I hope you guys will help me! You can sponsor me at my page here:
http://www.raceforlifesponsorme.org/sarahsmizz2

Thanks for reading! Much love & super thanks for your help & support!
To belief & survivorship!
Your friend, Smizz! 🙂

I want to work for something other than myself:

I’ve been keeping something secret for a while now. Mainly because I don’t want to jinx myself. And whilst it’s more-or-less official – I still have to pass ‘professional requirements’, which are things like CRB checks and the dreaded health-check. But – hopefully – if nothing bad happens & I pass all my ‘professional requirements’, in September I will be going back to university (as the Americans would say ‘med-school’ -sounds so cool) to study  Radiation Oncology. Yep.

This doesn’t mean that I’m giving up art, or indeed giving up on art. Quite the contrary, – if anything I believe this will become an extension of an already multi-disciplinary practice.  Art’s beauty lies in its ability to spread far-and-wide into other disciplines. Good art transcends something. I will still work as an Artist. I will still make art. I will still do commissions for clients – perhaps not as often as right now. But i’ll still be doing it – and I will still be teaching & working at SHU. Everything will be the same, except I will be studying on the side.  I’m always an artist first & foremost. Art is, and will always be, my passion!

Not many people know about my decision (something I decided  to commit to do just under a year ago now), and nearly everyone who I have told looks shocked (not in a good way). “Why? I don’t get it?” They all ask. (After what is Radiation Oncology?)

There’s many reasons for this. You might call it a quater life crisis. (it’s not but seems it).

After being told you might have Cancer, something fucks with your head. Like the rug gets pulled from under your feet. You might keep it together but you feel fragmented, you realize nothing at all is ever certain. You rationalise everything. You’re  completely in denial.  You’re strong – not only for yourself, but for your friends & family who are worried. You don’t make it a big thing, even though I think it’s something you just want to talk about all-the-time (or never speak of it?), just to make sense of it. But quiet doubt seems to consume part of your alone time.   The questions and the uncertainties seem endless.

Slowly I came to understand what could/might be/might have been happening. Part of this was writing on this blog to help let the pain out and I decided not to hide behind the mystery illness, but to go out into the world and live as best I could. In my spare time, I researched EVERYTHING about all different types of Lymphomas. The survival rates, how people discovered it, how it’s super tricky to diagnose, how it spreads, it’s genetic make-up, treatment plans, ect, ect.  After I read everything available on the first 10’s of pages on Google & many websites later, I started looking at other blood-cancers. I was fascinated. Curious. I wanted to know more. It became somewhat addictive.

I’m currently still having a bazillion tests, but the journey has already left its mark on me forever. I feel like a different person. It sounds cliched and it sounds weird, but I literally think and feel differently. Things I thought were important before seem trivial now. Before, my artist ego always wanted to be stroked. Now, I’m just happy that I’m doing what I love and meeting awesome talented people in the process. There’s no necessity to do a billion-things-at-once. It’s okay to smell the roses.  I have this whole new level of empathy that I never had before. Nearly every experience/emotion has been heightened. Which leads me on to reason number 2.

Since October last year, I have had 4 friends (or friends loved ones) diagnosed with Breast Cancer. My reaction to finding this news out, is completely different now than from a year & half ago, before all this crazy health stuff started with me. I don’t know why the reaction is different but now I feel like it’s personal – even though it’s so obviously not. It’s just a genetic systematic failure, that’s random or could be trigged by an environmental factor – but even that is in luck. 1  in every 3 of us will get cancer at some point in our lives.

Cancer nearly took my moms life in 2000, it nearly took my friend’s life, my friend’s moms life, the person down the street, on the bus, in the supermarket’s life – and i’ll be damned if it tries to take mine. This personal alignment has made me realize that I want to work for something other than myself, and i know i gots the skills to help. I want to help make cancer be no longer scary. Like getting chicken pox or something. I don’t want us to have this hurt. Because, the thing is, if caught in stage one, and even stage 2- They’re completely curable now! Which is awesome! But we often misread the early signs. (You gotta check-yo-self-before-you-wreck-yo-self!?)

Reason 3. In radiation Oncology it’s providing exceptional patient care without exception through developing & delivering radiation treatment plans & providing emotional & social/psychological support, it’s amazing research to cure or detect cancer early, it’s working with amazing advanced technologies & engineering technology. It’s working collaboratively, within a multi-disciplinary team of medical professionals, equally, doctors-nurses-nuclear physicists, ect – to create the best line of treatment to being cured (or to ease symptoms in palliative care cases).  I know that my background in art & technology will provide an interesting spin onto the research in this area. For example, 3D Printing (something we’ve been doing through the GRAVITY lecture series project) would be an awesome & much more easier/less stressful way to create moulds for patients for their treatments. BOOM! I have way more ideas. My over-all goal is that I want to go into the research side of it. It’s much easier to take what I learnt from art & apply it to oncology research, than vice-versea – but i’m super sure it will start to influence my work in someway.

The truth of the matter, however, is that when you go through some crazy dramatic life experience – such as this or something else. Things change. Even if you don’t want them to. When you live with this nagging small thought in the back of your mind that you might be dying, you feel like you deserve to spend the rest of your life on permanent vacation. And the reality is, you can’t. You must return to real life. I’ve been  finding it a bit difficult to go back. It’s like, how do you slip back into the ordinary world, and your ordinary routine and being your ordinary self when you don’t feel like yourself? My world view has been shifted, thus my whole line of perspective. It would be an untruth if i continued on being & making the exact same work.

I didn’t think I was going to get accepted onto an academic program this year. I thought that they would have made me get more science knowledge. So I was genuinely shocked when I got offers. I’m proud of myself for getting accepted to all 3 universities I had an interview at. I got interview invites at all 5 places I applied to. It’s all funded by the NHS so places are small. Once I got my unconditional offer from Sheffield, I withdrew from the last 2 interviews in Cardiff & London South Bank and accepted the S-Town. So here’s hoping that nothing bad happens between now and Sept & I pass my healthcheck – something I’m super nervous about since I’m still feeling really poorly.

I can’t explain my affirmation with this new area, other than it has poignant roots – and I know through it – if successful – I will be making a genuine difference. (The very thing that all I ever wanted to do was to make a difference). It’s going to be hard. It’s going to be less sexy. But I genuinely can’t wait for this new challenge. I want to work for something other than myself.  But remember guys, I’m still an artist – and will ALWAYS be an artist. Please don’t forget that.

It is to this end that I am committed to art but equally committed to creating/working on life-saving-research & I hope to make sure that  we work on developments which mean we will never loose someone young (prob up to about 80 years old) to cancer in the near future.

 

Photo on 27-03-2013 at 23.19

The Promise That I Made To Myself: To Never Waste More Time (3 months on)

I made myself a promise over 3 months ago. That if my time on the earth is cut short, I want to make sure that I use my time properly, and use every single bit of it. But the reality of this in itself is that it’s actually quite difficult.

A few months ago, I got told that I could have Lymphoma (big LOL) – impossible right? So after living life like a vagabond on the road and swimming in the Pacific ocean, and eating so much good food that it was unreal, I came home to see if I really did have this disease. However, things aren’t that simple. My Doctors don’t like American Doctors telling them how to do their job so it seems. They think they’re all about getting money from Patients and that I can wait for these tests, wait until things get really bad essentially.

I found a GP I feel like I like and can trust (which is rare for me!) – I don’t know why, he won’t let me talk about my symptoms. He keeps telling me to “Just ignore it and continue with life as normal” Like I haven’t? I think on some sort of subconscious level, this is why I like this dude as my doctor. He really just says what he thinks. I think this is because he’s Italian or something.

Anyways, he ordered some more bloodtests and something COMPLETELY different came up. Something I had NO IDEA WAS WRONG WITH ME. I’m pretty sure it’s completely separate from my other symptoms (or at least kind of hope?).  Again the Italian was cool and very collected about it. Asked me a bunch of crazy questions (including whether i’m body building, mega LOL – you just need to take 1 look at me to know that that ain’t happening!) and then said he was sending me for an ultrasound scan and more bloodtests and to ‘not freak out’ (He think’s i’m a hypacondriact thanks to the US doctor recommendation, or at least someone who wakes up in the morning, every morning – even when i was healthy – thinking everything was cancer – this is simply not true as until this year I hadn’t even gone to the doctors in 15 years!) I came home and googled it straight away what these elevated results could mean, because that’s what i do! I’m educated enough to be able to refine, and edit the answers and not jump to any rash dramatic answers.

But I soon discovered that unlike the bone ache, night-sweat, fatigue, lumps, nosebleed combo – which can be almost anything from TB, to flu, to Mono, to Lymphoma. These elevated bloodtests only mean 3 things in a woman. And that’s it. All 3 options sound pretty gnarly too. The best opinion is that I’m going to be infertile & look forward to a future of shitty health problems including heart-attacks and so forth. Or 2 different types of cancer/tumours  – which aren’t Lymphoma. FML.  Bone ache is going to have to wait, apparently.

Meanwhile, last week i watched Hurricane Sandy flood peoples lives, and terrorise huge communities.  I was honestly scared for my East Coast friends who have now become family.

I tell you all of this because the difference between life and death is remarkably small. And it’s not until you face it directly that you realize your own mortality. Us humans are the only animal where we think of the future, as a motivation and as a result makes us quite optimistic.  We usually think about the future as though it will occur for us with absolute certainty, and that makes it hard to imagine death as a motivation for living. The C-card came up for me, in many different ways unexpectedly, or something random like a storm could literally make a tree fall on top of you, which is forcing me to contemplate my personal drive for existence.

I pledged to live my life as fully as possible 3 months ago, as though I had nothing to lose. It was easy when I was on the road, in a different country because I had lots of dollars, and it really wasn’t real-life, I consciously tried to fight against the status quo, that was the point of the roadtrip.

It’s so easy to get stuck in the waiting place, putting things off until later, even when those things are vitally important to making your dreams come true. But the truth is that, in order to make progress, you need to physically and mentally fight against the momentum of ordinary events.

It’s the fight that matters. You have to remember to go against your instinct, to confront the ordinary!

This is, of course,  extremely mentally and physically taxing. I’ve been feeling the fight very slowly fade since I’ve been back: work, money and cold weather whilst feeling poorly really makes it so much easier to fall back into meaningless routine. And I DON’T WANT to once again become a cog in the machine called quo. So I keep writing blog posts like this to remind me, and you, that we should live the best life we can.

Despite saying I can feel the fight beginning to fade, I’m sure it’s just because it’s not as exciting as a 18 state roadtrip. But in keeping to my promise, and getting to what is the meat and bones important: since I’ve been back, I have re-connected with ALL of my friends, even friends I haven’t seen in 6 years!! I try and buy my mom a surprise every few weeks, I keep cooking for her so she knows I’m thinking of her. Everything is YOLO. I love the wind in my hair on my bike, I love that I now notice how beautiful the leaves look on the trees. I try to actively get up earlier so I can do more with my day.

Doing something remarkable with your life is tough work, and it helps to remember one simple, motivating fact: in a blink, you could be gone. To paraphrase Steve Jobs: remembering that you are going to die is the best way you can avoid the trap of thinking you have something to lose. You really have nothing to lose.

I sometimes feel like I’m being tested through this journey to remind myself and to help me get to what I wanna do. I feel like I’ve grown up for a second time. Fight. Live your dreams and aspirations now. Be who you want to be.

Here’s to being and becoming!

And just as a quick tip, please everyone – Prostate & Ovarian cancers are silent killers because you don’t have any symptoms until it’s spread. Please have regular check ups, and also see your doctor if you think things with your body aren’t right. Sometimes, you really have to be your own health advocate. This is something I would have never ever thought about until I was at least 30 ha!

PLEASE SPONSOR SMIZZ FOR THE RACE FOR LIFE!

yes. i am running the RACE FOR LIFE to raise money for CANCER RESEARCH.

PLEASE SPONSOR ME HERE! http://www.raceforlifesponsorme.org/sarahsmizz

RUNNING THE RACE FOR LIFE

The question on everyones mind isWhy is Smizz going to try and run the Race For Life? 

The answer:  Because There’s nothing worse than witnessing a loved one, or a close friend, having to beat cancer. I have witnessed my mom battle with cancer & 2 close friends. This is for you guys, and your friends and family.
Cancer takes over everything! Your life, your mind, your thoughts, your priorities!


——————-»PLEASE SPONSOR ME HERE!!! «<——————-


SMIZZ HISTORY

When my mom was first diagnosed with Cancer, I was 12.  Years on, with every single illness she picks up, whether that’s just simply a cold, I worry like crazy. When I’m away I wonder if she’s OK. She is always on my mind.
My mom is the woman responsible for the cheeky, lack of common sense, all-hoper Smizz. The person who cares unconditionally for my brother and I, who gives me £6 last minute for a South Yorkshire Day Tripper because I forgot to get cash out of a ATM earlier. The person who always cooks me a meal & leaves in the microwave, even if i’m out, who calls if I need anything when I’m feeling poorly or sorry for myself.
There’s so much that my mom does for me. But I want everyone to know that there’s not enough words that can say how painful the thought of losing someone like this hurts,  & how grateful i am for her strength and Cancer Research & the NHSand just how much I love my mom.
Fast forward to right now, I am currently in the stage of being diagnosed with a mystery illness. For 3 months I have had constant dull bone ache/pain in my arms, shoulders back & ribs, fatigued for no reason at all, drenching night-sweats and an enlarged spleen.
I’m sure it’s not Cancer ! (really!), but it’s been suspected by my GP & now hospital specialist (along side other diseases!) – But I’m not out of the woods yet. A quick google search of these symptoms will instantly bring up blood cancers. It is for this reason exactly that I can somewhat sympathise with anyone who has had these symptoms before they were diagnosed  (at how life consuming and frustrating they are!) and can empathise with just how crazy and anxious the time waiting around between tests like CT Scans & Bloodtests can be. But also I want people to be able to see a specialist within weeks & get the care they deserve. I believe Cancer Research & the NHS do this but i want to make sure that they have the resources to do so in the future.
I’m running the Race For Life because I believe that the money raised in an invaluable resource in helping to cure & treat Cancer so we can have more time with our loved ones. Please help me to help this cause!
Every pound you donate really does make a difference – so please sponsor me now! Many thanks for your support. I know that together we will beat cancer!!!

Read my story and keep up to date with my progress on training and fundraising here!

I have a relatively low target to raise money as I only have about a month to do it in, but PLEASE donate so I can EXCEED THIS. THANK YOU SO MUCH 🙂