Reflection – Applied Imagination Journey

Last tutorial & term reflection

My last tutorial was as enriching as ever. Discussing my project in a fruitful manner made me realise how much I’d learned along the way. Not only had I gone off my comfort zone but I had overcome many small obstacles across the way, swimming deeper into a sea of uncertainty that I had now learned to embrace.

Starting this research journey, I had lots of big ideas in my mind – but the practicalities of such were slightly off. They were big but were they authentic? Were they trying to be solutions instead of means of research? I realised I had started with big ideas because like many, we’d identified problems and like the entitled students we kind of are, we believe we have the solutions right away.

It has never been more clear that to learn what would suit for a or b scenario/problem, it is important to test those ideas, tweak them, actually engage with those which ideas are intended for. I am proud that I am not doing what I initially had come up with because otherwise it would mean I stayed so safely in my comfort zone I had forgotten the whole point of doing this masters.

Exploring my skills, my interests, my directions throughout research, testing and engagement helped me understand that not everything is the initial layer we first encounter. It takes time to analyse, observe, reflect, engage. I have learned to inform myself from different sources, most importantly from real literature, journals, published papers, google scholar and books have been a great help. I have found incredible facts, and research interventions that have inspired me to realise my own journey – or at least, understand it better.

I no longer believe that when there’s a problem, or a gap identified, the key is to come up with an answer or solution right away and stay stubbornly with it; but instead, I believe in the importance of exploring it, understanding it, testing thoughts, engaging with what the audience might need and so on. I know there is always fear of failure, I certainly felt fearful of sharing or asking for stories from such a delicate topic – but I remember the importance of transparency and ethical research – and I was upfront from the very beginning allowing people to understand my reasons for asking and creating.

Somehow my project became about writing, about narratives, about people and about cancer caregiving. A year ago I would’ve never imagined I’d be doing a project about this and so taking the courage to explore it and through interventions, analyse the way of doing it feels like a sign of growth. Interventions aren’t solutions but instead bridges to understanding a little better.

I am beyond grateful for my tutor, for guiding me and pushing me throughout my research. Helping me understand how important it is to stay authentic and to trust my north start. Authenticity, autobiography and authorship are the elements involved in my research – and using this as base for further interventions I know I will eventually have a formed project I’ll be proud of and know it will be useful for my stakeholders.

I have definitely grown throughout this term, things have clicked. I’m ready to put all this knowledge to practise for the next term.

Intervention: Analysis and observation – Results

The results of this intervention will allow me to observe points of improvement, the correctness of the approach (idea) and finally, whether there’s a possibility of this project carrying forward. The intervention serves as a mini in depth review of the response towards the project and to evaluate whether it would serve any purpose.

Based on this intervention the following is an analysis and observation of the response towards it. Here I’ll analyze the following points that I’d stated as part of the audience and objectives.

It’s important to keep in mind that most of the responses are from people from different nationalities and not limited to one geographical location. This has been done on purpose in order to show or test universality in narrative, rare cancer understanding and feelinghood. Though its a small sample, it still shows a positive outcome for empathy, awareness and accessibility. The common language used was English, translating it to other languages is an important goal so that the narratives are the last thing to get lost in translation.

Further steps:

After analysing this intervention, I am yet to identify whether multiple self-narratives is the correct way, such written in first person or if I should tell the account of the stories from my own personal journey interlinking with all the different journeys I have been learning about. Still maintaining its collectivity but having more control of the tone, engagement and voice.

Once I have decided the angle for the journey to be approached, I will bring an illustrator on board. I will contact Cholangiocarcinoma Foundation for feedback of a draft as well as a foreword.

Alongside this, I have contacted a psychologist to help me edit the structure of the book to make sure it remains comforting as well as informative and accessible.

Further observation lay in my own process. I personally struggled to contact people who are related to cholangiocarcinoma because I felt scared of the language I should use and the ethical considerations involved. I made sure in every step to ask for permission, to allow for sharing to be their choice and I also made sure to explain that this is a master’s project with the intention to be taken further to raise awareness.

I thought it would be ethical of me to initiate this qualitative research sharing my own story, allowing myself to be vulnerable as a way to allow other people going through the same journey to understand my motives for my project.

Other struggles are the blockage of when some people are not willing to share their story, along with the fear of the intervention being rejected or poorly interacted with as it comes from a good and well-researched place at heart. However, it was heart-warming to see such a positive response and those who did not feel like sharing their own journey or words were constructive, kind and open to explaining why they didn’t feel ready yet.

Overall, I have always known about the power of storytelling but it has been extremely useful to run this intervention and truly test whether its self-narrative that holds such moving power. It has started wonderful conversations with people related to CC and those completely unrelated. It has shown, even at a small scale level, that behaviour can change if we involve personal narrative (with a modern twist) into the picture.

I am hopeful that this could serve as a base for further research, not only for investment in rare cancers research but also in the mental health and accessible support of those who are direct carers to patients with such diseases. Moreover, I hope that taking this further helps many people who are about to start this journey with their loved one to feel less alone.

Proof:

Challenges

Covid:

Starting off this avenue of research, the challenges seemed quite clear – I was venturing into a space of health which at the moment is the focus on major worldly crisis.

With this in mind I decided to still go ahead and find an adaptable way of applying my research into something that is both tangible but accessible in a time were contact with healthcare is currently and legally unaccessible.

Most of my planned interventions was to do a photoshoot with a few cancer patients along with their carers to understand their own experience better, we had scheduled to meet the 6th of July of 2021. However, due to fears of catching covid, the shoot was cancelled.

Currently, Spain has been experiencing a surge in cases and the emergency rooms are being filled again. At the point of the photoshoot appointment I still not had gotten my first vaccine because vaccines in Catalonia had run out. I only have just recently gotten my first vaccine; it seems that until I don’t get my second dose many of the people I have gotten in touch with won’t accept meeting for a shoot.

Culture:

Here’s one of my biggest challenges, aside from covid, it’s cultural. For the past four years most of my research, art work and technique has been developed in the UK. My focus has always been there and in fact, it was the reason I moved to study there because of a simple reason: culture and understanding.

In Spain, I have struggled to take things forward, culturally there is a lot of stigma around mental health, the arts and research. All of those are low funded and most times, politicians don’t wish to acknowledge the alarming importance of these fields. When I had reached out to people here for opinions and testing regarding other projects, people have been slow to reply, oftentimes asking to have a phone call though because of auditory issues – I always need to see responses written down (it helps me process information better and also understand it). This is something that in UK, I can express openly as neurodiversity is widely accepted and they’ll take the right measures to make sure that their response is accessible. Meanwhile, here, professionals seem to have a hard time understanding.

I have also struggled in terms of geographic thinking – while I think of the development of my project, I am aware that from September to December I will be in UK, and therefore- it would make sense to base my project there, not just because time-frame I need to be somewhere that is where I am but also, because professionally speaking and in terms of research, there are more efficient responses, involvement and understanding. I do not consider this a “hard” obstacle, but a realistic observation that based on time-frame, it’d make more sense to test interventions somewhere where they can be truly tested and analysed rather than somewhere where that process is still far from comprehended and is delayed in most occasions.

Conclusion of challenges:

Moving on, and based on my tutorial, I am going to create a geographic-less intervention in which I analyse stories and comments I have received from carers of cancer patients who are willing to participate in this storytelling project and construct it in a universal layout. The idea is that we understanding that the feelings of being a carer are mostly shared no matter where you’re from (or at least, we will analyse or observe if these are similar in any way) regardless of culture, race or gender. It will then be useful to categorise opinions too. The concept is to raise awareness that carers, mostly family members and friends, are part of a tough journey as well, and that recognition, mutual support and knowing that one is not alone feel like crucial themes to raise awareness on.

How can the work of caregivers be highlighted through creative activism?

Here’s the thing. Up until now I had been focusing on cancer patients and mostly because I experience what is like to live with one on a daily basis. I am aware it is though and it’s a hard reality to process, however, the diagnosis did not affect just my mother but also everyone in the household and most especially those who focus on giving her care, my dad and I.

This led me to the conflict of evaluating whether I should be focusing on patients or caregivers or both.

To start with, the doubts emerged in my head a couple of weeks ago, when I joined several Facebook groups of different cancer patients, they would get to vent and share their stories, send each other support links and different platforms where they could access information. One of the groups was only for friends and family members of cancer patients, the conversation there, while different was also quite similar.

Some people felt exhausted, anxious, fearful, guilty and all in secret. Most of those who identified themselves as the carer of the cancer patients highlighted that they had to stay extra strong for the both of them, extra positive, had to try to look after themselves and the patient. Their mental health wasn’t at all great and there was a partial guiltiness to this because “they aren’t the ones diagnosed” and they “aren’t the ones going through it”, only that they actually are going through the journey as well.

I used to always tell my mum when I was little that I’d rather die before her because I’d never ever want to go through the pain of seeing her go. Weirdly, as aware as I am today that it might sound extreme and anti-natural with the cycle of life, I still stand by saying that the thought of losing her is unbearable. And therefore, I’d much rather be the one getting sick than be the one seeing the person I love the most in the world go through it. It’s a very strange messed-up feeling, but thankfully, it seemed like I wasn’t the only one feeling that way. Many people in the group related and would share their own mental health stories about how they have been dealing with this whole change, secretly.

So, through my research on mental health and cancer patients, I did realise one very clear thing, there was a lot. A lot of information, a lot of research done trying to improve, observe and evaluate the factors of poor mental health in some patients and how to support it. However, the literature found for mental health, support in caregivers is a very reduced number. The few papers that do talk about however, do mention the increased levels of anxiety and depression in caregivers due to the responsibility and the emotional conflict they undertake.

And all of these thoughts lead me to my tutorial, yesterday 28th of June of 2021.

So what happened during my tutorial?

I updated my tutor on some of my findings, some of my thoughts and most importantly the direction I was feeling inclined to.

I started by explaining that my question is due to change but was not going to change until I had processed the direction I truly want to take. Also, after I have done a photoshoot with a cancer patient and her caregiver.

After this, I was suggested that I should have someone record or photograph the behind-the-scenes of the photoshoot, especially if my mum will also be present during the shoot, this would not only be used as evidence of my interventions but also as an emotional archive.

Furthermore, I expressed my concerns about my focus, about whether it is caregivers or patients and whether having such a specific narrow point on cancer made things not just more limited but also less interesting – and I say less interesting because there is beauty in the diversity of stories that can be told and found.

Through engaging in a very thought-provoking discussion, David managed me to do that he does best, lead me to answer my own question, quite naturally. And so I did, I then expressed I’d like to focus solemnly on caregivers, their labour and bring spotlight to the different faces and narratives these unseen heroes have to say. Some of the words that were highlighted through conversation where: legacy, historial archive, resource.

Moreover, I had made it clear that two of the creative mediums I wanted to focus on exploring were narrative and photography and they are the one dearest to me but also the mediums I want to be known for as I keep developing professionally. This masters is about taking calculated risks and being authentic to oneself and I am done running away from my interests for the fear of not being good enough at them – I will only be good at them and make them my own practise by being perseverant and believing in my skill and power to tell stories, not just this but it’s a good way to finally put myself out there and do a project for the benefit of others through my own work.

So finally, in short

My intervention will be

A book, containing the narratives of contemporary caregivers along with their photograph

I will measure how, all the different stories and faces that lay behind those in need of care, can be recognised and celebrated as seen heroes that through their kindness and dedication, make a difference in a person’s life day by day

How can creative experiences improve the way cancer patients and caregivers cope with their journey?

What

This research focuses on examining ways in which creativity and artistic disciplines can support the mental health of ill patients. We look into turning an artistic discipline into a force for good, a humanistic tool for supporting those who might need it. In this study, I choose to focus on cancer patients and their caregivers as receivers of a creative service as a way to feel better. The aim is to measure whether the levels of hopefulness and self-esteem increase in comparison to before the interventions proposed.

I propose that the engagement with an artistic discipline such as photography, as a service, can have positive effects on the patient’s health if done appropriately and with a carefully developed ethical methodology and risk assessment.

I also observe that up until now, cross-disciplines such as art-therapy in cancer, though still a not fully explored practise within cancer patients and hospitals, have been used as tools for self-exploration and distraction. According to some studies, cancer patients who underwent chemotherapy and then did art-therapy for an hour seemed to have improved levels of anxiety and depression. Here, I takeaway the importance of distraction, engagement and experience as elements to be considered for this study; however, I aim to utilise the experience in a less of a therapeutic paradigm and more as an experience that can boost the patient’s sense of self as well as those around them, forging a stronger connection during such difficult times.

I am interested in exploring inner and outer beauty, human connection, humanisation of the arts beyond trend activism, and exploring alternative ways of creating awareness of this illness.

My role in this project is as a project manager, humanist and creative practitioner. Ideally, I’d like to collaborate with other artists who are willing to participate and turn their art work away from themselves and on to creating a positive impact in a reality that we cannot run away from, cancer.

Why

A life threatening illness such as cancer can change a patient’s life in a second. According to cancer research UK, in females, there were around 77,800 cancer deaths and in males there were around 89,000 cancer deaths in 2018. Based on their data, every four minutes someone in the UK dies from cancer. Furthermore, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime. This is alarming, it also means we cannot escape or turn a blind eye to it. We must create awareness, we must invest in research through all the possible ways, we must find new ways in which cancer is talked about, in which we support others and in which we can learn to support ourselves. I believe new initiatives need to be brought to the table, new cross-disciplinary research must be introduced, this matter because it affects us all in one way or another.

According to a cancer study done by the Mental Health Foundation UK, 49% of people interviewed by the charity said they received no support or advice from health services about managing their mental health through cancer, while 66% said they were not informed at all about potential mental health problems that could arise at the end of treatment.

This is relevant not just for cancer patients but for their families and designated caregivers. There are reports that state levels of depression on family member’s of cancer patients because of the uncertainty, the fear and the process of seeing a loved one go through so much hardship, not to mention the economic stress depending on economic stability and or geographic location.

This is an urgent matter, it’s urgent because it’s present and while there is much support available, there can always be more.

How

At the moment, the application of different interventions will be a way to understand more about how cancer patients can be supported through creative experiences.

Some of the interventions that have been thought through, these can vary but will only be analysed after their application.

Intervention 1: A Photoshoot to Remember / preserving memory

Small step: Photoshoot with eligible and willing cancer patients and their families or loved ones.

Big step: An artist’s non-profit organisation supporting cancer patients and their families through empowering, fun and meaningful photoshoots. The shoots would be in collaboration with stylists and make-up artists depending on the patient’s choice. Photographers, stylists and MUA’s come together to celebrate the lives of the patient’s and the role of their caregiver through a creative experience. The patient receives a copy of the photos along with a printed version of their favorite one.

Ideally, the photos could be taken to an exhibition to appreciate the strength of these patients and loved ones and raise awareness at all the ways in which cancer can be showcased.

Intervention 2: Cards to Open Up

Small step: Curate questions with the help of a qualified psychologist to promote conversation between a cancer patient and their loved ones, facilitating conversation and allowing for the patient to feel listened to and for the loved ones to understand the complexity of the journey.

Big Step: Create a deck of cards with the defined questions and design, ship and bring to cancer charities with the opportunity of them being given as a resource for conversation at home.

What if

What if the interventions actually worked? What if they could make the slightest difference and raise awareness? What if we could take the pictures to an exhibition or museum and showcase the beauty of those struggling to appreciate their journey and fight and celebrate their resilience? What if we could find a way in which creative experiences tailored to specific illnesses could improve their sense of self and their hopefulness levels? What if a road to easier communication could be created with the simplicity of cards? Or what if, through the failure of this interventions and this proposal, we are able to discover new and more accurate ways in which to support patients and caregivers enduring this journey?

Sources:

Cancer Research UK

Mental Health Foundation UK

MacMillan UK

About Change

In december 2020, my mum was diagnosed with stage four cancer. A very rare one in which chances of surgery are nule. My life changed radically. I left the job I loved, in creative education, I left the guy I loved, and the city I loved, to go and be with the person I love the most in the world, my mum. It was an easy decision during a very difficult time.

What’s funny is that during one of the most unstable years of my life, towards the end of it, it was all looking a bit more stable. I was about to rent a flat, near where my university was going to be. I was going to embrace living with my partner and enjoy every minute of it.

But life works in very interesting ways and once again, everything changed. So, fast forwarding to January, my mind racing about the idea of starting a full time masters, online, feeling alienated from the world I knew (in London), alone in a city I am meant to call home, looking after my mum was not at all how I had expected my 2021 to be like.

I have learned the importance of love, and most importantly of embracing the beauty in the little things, the little moments. My life has been a constant cycle of never-ending changes, and adapting to change has been a skill I have long learned.

Change in my life started at the age of 1, when I left my cozy home in the city of Lleida to move to the seaside life in Huanchaco, Peru – there, I was raised for over 10 years. Then, my family and I moved to New York, and then to Pennsylvania. When change is constant, you either ride with it or let it consume you. It was hard, inevitably, but it did prepare me for what the future had in store for me.

I now find myself sitting down in my auntie’s flat in Lleida. I am experiencing high levels of stress for this project’s research. Why? Because with such big events going on in my life, with so many problems going on – I wonder, how do I cover it all? How do I make big improvements happen? How do I help my mum and those going to hospitals feel better? How, how, how… and how do I find a common ground between my interests without heading into a deep health-related investigation that would mostly fall into a scientific spectrum.

I have been thinking and thinking and doing a lot of inward reflection, which I then have been advised to stop doing. And I have listened, and I have embraced that process of looking at things from a less emotional point and started looking at things from a much more analytical one. What is the biggest “inciting” element of emotional distress within hospital patients and family members? CHANGE. C H A N G E. \

“Duh” you might think, but it’s not as obvious. We have been wired to achieve stability, we have been taught to try to make life as static as possible, or maybe not all but I have. We aim to be stable, to have security, to be predictable and to know that we will hold a future. So when we are told we’re ill, or that the person we love is ill, our life changes. We might not notice right away, but the alarm bells, the anxiety, the fear, it all is evoked from the deep and engraved alert that change is coming our way. Most times, we relate change to an extremely negative path – completely understandable if your life, loved ones, future, home, money are at stake. But when change is unavoidable, how do we embrace it?

As someone who has been living with a person with stage four cancer for the past six months, I can say I have observed deeply how much change my mother has been going through. And of course, how much change each of my family member’s have been going through. But here’s the thing, we all go through it in different ways, however some choose to ignore the transition they’re experiencing while some decide to embrace it. I have been placed in both spectrums. My mum has been hit hard by the change of her life. She knows cancer sucks, she understands it’s irreparable and that there is no going back however, she struggles with the idea that her life is different.

And I’m not sure if it’s because we’ve been so impregnated with the idea that being different is bad. She knows that for now she cannot work, for now, she gets tired on walks, for now, she’s losing her hair, for now, she’s feeling nauseous, for now, she’s emotionally drained, for now, she doesn’t want to socialise. We link the positive embracement of change with over-the-top hollywood movies about a cancer patient that decides to complete their bucket list and live happily shortly after. We mock the idea that that is possible or we even assume that this way of thinking could only possibly happen in movies. That it’s an absurdity – but what if it isn’t?

My mum has made it clear several times that she has accepted her diagnosis, “that’s life” she says, however she can’t fully embrace the change, in a way in which she re-adapts her old version of herself, her old life, and makes a new life out of the new person she’s inevitably becoming. And in all honesty, I haven’t fully either – I have felt stuck in different levels of my life, not understanding how to move forward without looking back; wanting to be two different versions of something I no longer am. Life has changed. I have changed. It sucks. We have to adapt.

And we either become hopeful change optimists or we become bitter and anxious.

In a time where so much has changed, where the world has changed, I hear comments like “Can’t wait to “go back to normal” – what’s normal? The old? Can’t we move on and adapt to something new, the normal is the present. Why don’t we embrace the goodness that has come out of it to then move on and be ready for future global changes? It is only that way that we can truly potentiate our minds, in a healthier wired way of thinking – and therefore, being slightly less worried about looking back and more excited about what’s to embrace.