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.
I had the opportunity to ask questions about the publishing industry and present the theme of my research to Richard Reynolds, our course leader with loads of background experience in the publishing industry. He had worked as an editor and the co-founder of his own book publishing company.
Some of the recommendations and guidance provided by Richard include:
Using social media as a way to test my content as well as grow a following; sometimes, having a strong following proves there is an audience for that kind of content and therefore, it gives a bit more credibility to the unknown author.
Prepare a Book Plan, including excerpts of the book, summary of it, the research, audience. Before sending off to publishers it’s important to look into what companies might be interested in reading this.
Research books with similar topics, check out their publisher – then find out whether they’re open for submissions – get in touch over email – my own personal brand matters. It’s important I come across someone who knows why they want to present the book and why I am the person to share the stories I am choosing to tell.
Understand my audience, gather data, share excerpts, consider what to change edit and how I want to tell the story
Finally, if thinking about self-publishing, it’s important to have a carefully laid out plan, time investment will be key. Find accessible platforms and most importantly, plan a promotion plan.
Overall, it was extremely useful to chat to Richard. He gave me some pointers that I hadn’t thought of and made me understand the possibilities through different examples of people he had worked with. The next step is to look into similar theme books and check out their publishers, get in touch with the publishers as an opportunity to create this meetings as interventions. Moreover, to keep writing, get serious, collect stories, knowledge and find the most suitable way of delivering quality content for an audience that needs it.
As part of my next steps, I mentioned I would update a new chapter of my story – collect thoughts and responses and then continue with my analysis.
Extract from my writing:
When I did all those google searches, I truly was trying to stay optimistic, it wasn’t a self-torture method in which I was aware that percentage was going to come up. I guess maybe I was trying to find an explanation to how it all just came to happen and what is meant to happen next. After all, one day you notice your loved one is unwell, the next you’re told it’s a tumour, the next it’s malign, the next it’s got a name, the next you are expected to accept this is reality and is here to stay.
Just like that. No guide, no manual, no explanatory video of what to do next.
Everything had changed the minute I heard my mum’s unwellness was cancer, but doing that search served as a confirmation of that reality. It’s like, I had been trying to process what I had been told, trying to perhaps lessen the effect of it by telling myself “it can’t be that bad, it’s my mum, she’s healthy, she’s always been healthy” or “hopefully, there is a cure, more options… like with other cancers”.
Feedback, responses:
Today, 23rd of August 2021, I posted one of my writings, an extract from a chapter I am yet to finish – but I wanted to involve comments of other carers who, like me, might understand the anxiety of searching up a loved one’s diagnosis online. What thoughts do they have on what I’ve said? Can they even relate? What advice is there to give? And so to my surprise, there have been some responses and most, I’ll be including in the continuation of the writing.
Disclaimer. Warnings. Making people aware. Hope. (key words from comments)
Some of the observation here so far are very interesting – there’s definitely relatability as well as searching for answers and finally, holding to hope and optimism. I love to see it. I will include this, with permission, as part of the continuation of my next reflection – even against the numbers, the percentage can still be your loved one – no battle has been lost.
I am now in a space of mind where my topics of research feel way more clear than before I started this journal. As you might see, I’ve changed angles throughout my time researching but not drastically nor without purpose, instead – use this as proof of deep research and interaction.
One finding leads to another, and so on – this cycle leads to clarifying certain aspects of the journey, taking others away and realising what’s tangible and applicable – as the course states.
Process:
Calculated strategies and risks, narrowing down & understanding the angles
I started the journey believing I wanted to explore healthcare, wellbeing and creativity in some way. I first wanted to incorporate entertainment programmes within hospital (still a valid idea but not one I wish to pursue during times of a pandemic; not just because of it’s legal limitations but because I do not wish to put anyone in harm; I also no longer want to work as the producer, overseeing other’s creativity but instead become the creator or one of the creators).
Continuously, I thought I’d advocate to improve cancer patient’s wellbeing through film screenings or through photography. However, my intervention planned had received approval (I had a person with cancer and her caregiver willing to do the photoshoot – and certainly, excited about it) – however, covid cases in Catalonia started to rise during the time and they decided to cancel the shoot because of safety. As an ethical photographer, only having one vaccine (rhythm of vaccines in Catalonia has been slower) and understanding the risk, I decided to stop pursuing this until I had my two doses and cases in Catalonia became stable again.
Next, I focused on caregiving, and focus on doing a story-book of caregivers stories through photography to highlight their work. There have been multiple campaigns highlighting the labour of unpaid caregivers and also, after my tutorial- I realised that if I were to do this somewhere, it would have to be in Spain to be able to take the photos. Approaching stories in a very generalised way felt impersonal and I thought I’d much rather have a specific focus to start with.
Here is when I joined a caregiving Facebook group in relation to cancer; which helped narrowing the focus. What I observed was that people felt comfort in sharing each other’s stories though most involved a lot of clinical wordings and asking for advice, a lot of hard stories to read about loss but little about the process or the journey. I had read those complex feelings on comments but not as much on posts.
Within the cancer group, I read relatability comments based on the cancer type. For example, people that would post their father’s battle with lung cancer would get comments expressing their own father’s/mother’s/husband’s/wife’s journey with lung cancer as well.
I myself seemed to relate too – as it’s much different the feelings that comes with a type of cancer that inoperable, or at Stage I than an inoperable stage IV.
Therefore my observation was: caregivers need support, they like to express themselves, most tend to open up more when others take the first step, many look for comfort, many feel alone – many feel scared, most relate based on stage/type of cancer though of course, there’s universality in the fear of a cancer diagnosis without detail.
I then looked up for a support group of the cancer type my family has been involved with because of my mum. As I joined it I realised the following: I, too, felt less alone by being with people who could directly relate. Rare cancers are very much frustrating, there’s less information about it, and the emotional health involved in accepting the diagnosis/prognosis is more complex.
Here, I decided to focus on sample study and focus on caregivers of rare cancer types; but in my research, to be specific, of cholangiocarcinoma/bile duct cancer caregivers.
So my intervention was to write my story in a narrative way, involving techniques of storytelling including engagement and beginning, middle and end. Shared it in book format, almost like an opening chapter or essay – and ask for feedback.
You will be able to read my evaluation of my intervention on another page of my blog.
As you see, my process has been expense and with some obstacles, but it has led me to a clearer path. I still am touching subjects of healthcare, wellbeing and creativity but through an accessible, needed and transferrable form.
Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Observation:
Based on the research of books available these two seem to be the most relevant in the act of caring, one centred in cancer cancer and the other one in general unpaid care. I have found both extremely interesting in terms of approaches as they’re varied, I will read both to have a better conclusion on it- however, from the examples and comments they both seem to be books responding to a community who is truly in need of targeted support books.
Hope insisted we stayed on to discuss not just the talk but our own personal feelings – I took this opportunity to express my thoughts about narrative and my own project. Unfortunately, this wasn’t recorded for ethical and privacy reasons and Hope mentioned that, if the time is found, she’d be able to send me written feedback about the project. I have send her an email with it as well.
Anyway, I expressed my project: I have caregivers on one side, patients and two objectives: awareness and/or support.
She used her own example, as a New York Times best-seller of the book Motherless Daughters, that highlights her own story with grief, after her mother passed away from cancer when she was 17.
She explained that during her university studies, she too had been given an assignment to develop a portrait project on someone or something and she had decided to do it on Bruce Springsteen and music of her generation. She said it was something that resonated with many and that was relevant to the time. However, what she noticed was that she would spend most of her time actually writing about a boyfriend she had the year after her mum died (also the year of a lot of Bruce Springsteen). What she noticed was that she had been with him because he was also going through grief during that period, and in a way – they’d found comfort in each other without necessarily talking about grief.
She had found herself writing about grief without knowing – and when she presented her essay project to the class, her teacher pointed out the project wasn’t about bruce and his music but instead, about grief and support.
She then used this base to start writing a book proposal and went on to collect 24 stories from different women going through the same grief of loosing a mother. What she realised is that some stories carried similar elements and others complete different ways, but what she thought was most wonderful was the idea that they found comfort in speaking to someone else who understands.
The idea of feeling alone during one of the hardest times of your life was something that Hope had mentioned was very relevant to her own story; and that when she created a book story she had initially intentioned it to be just about the other women’s stories and not her own. However, her teachers suggested that it was her story the conducting one and that to leave it out would be again, like the Bruce Springsteen case.
She agreed and drafted her proposal, this got her an agent and publishers interests – this served as a prompt to write the full book quite early on in her life after that project, and when published she mentions being contacted by so many women across the world, through letters, letting her know how much comfort and relatability and support her book brought to them. She mentions the book as her own intervention, along with the essay and the proposal.
n terms of feedback, I got to briefly explain my situation along with the idea of the book and the complex thought between building awareness or creating support and she expressed that by creating support I’d be ultimately building awareness. She also told me include my story as the conducting one, as proven with my research, people often need that push to open themselves up in the first place. Finally, she suggested once I have a first draft to send it over.
What I have learned from Hope’s trajectory
Much of Hope’s journey resonated with mine. Caught up doing a masters where I cannot back down from because of a scholarship and therefore, having to do it while being a caregiver has been complicated. And much of my headspace does not process focusing on other information that isn’t what my reality currently is. I have gone in cycles trying to understand what is it that I want to achieve? Who am I trying to help? What am I focusing on? Because I’ve gone through so many unexpected changes in a matter of six months that things can be a bit of a rollercoaster.
I find myself in most of my free time understanding how to deal with complex emotions, the other time I spend speaking to people who are going through the same and the other, reading up on heavy data hoping to find some optimistic journal to hold on to and finally, most of the time I’m supporting my mum with fear and love.
My writing was clear: it resonated with many people currently going through the same, being the main supporters of a loved living with a life-threatening disease
However, there are little books about the caregiver’s cancer journey; how to support oneself, the other and how to keep your life going as well. The only available ones are few that discuss a lot of the technicalities but perhaps, little about the complexities of thought and heart.
The brief but intense and practical discussion with Hope helped me understand where my project could head, who it could support and how I could make it happen. This in itself, has served as a way to understand and validate the relevance of narrative as a tool of support. And to start feeling less guilty about not focusing on a theme which is not linked to my personal circumstances.
Today, as part of my research in caregiving of rare cancer types, I will be attending a talk by Caroline Criado Perez. Caroline is the author of the Sunday Times best-selling book ” Invisible Women”.
Please find further description of the book below:
Data is fundamental to the modern world. From economic development, to healthcare, to education and public policy, we rely on numbers to allocate resources and make crucial decisions. But because so much data fails to take into account gender, because it treats men as the default and women as atypical, bias and discrimination are baked into our systems. And women pay tremendous costs for this bias, in time, money, and often with their lives.
Celebrated feminist advocate Caroline Criado Perez investigates the shocking root cause of gender inequality and research in Invisible Women, diving into women’s lives at home, the workplace, the public square, the doctor’s office, and more. Built on hundreds of studies in the US, the UK, and around the world, and written with energy, wit, and sparkling intelligence, this is a groundbreaking, unforgettable exposé that will change the way you look at the world.
The importance of this talk
This talk arises from a post that a reader wrote in regards to the book; this act in itself showcased not only the importance of turning heavy data or information into easy-to-read and accessible narrative but also the importance of believing that someone out there, no matter who, might happen to benefit from it.
Therefore, building awareness & prevention.
As a result of sharing this personal narrative (Hope Edelman’s one) other women, who have not read the book, will be more alert about the signs, and might even get the book. Continuously, this led to Caroline scheduling a talk with Hope to discuss further information on data gap in medicine.
This is of relevant to my project
Because it demonstrated the importance of personal-narrative; one story can create a domino effect, affecting multiple lives of others positively if spread right – it helps create awareness and prevention, or support and relatability.
Again, this also shows that, turning “specific” topics such as “data and gender” into a book can happen. It can have an effect. It can contribute to some scale into a bigger problem – and make others relate, realise and take action.
It can reach multiple audiences, interestingly, different stakeholders can benefit from it.
What I have learned:
During the talk with Caroline Criado Perez and Hope Edelman
This discussion was extremely informative because we touched on the topic of gender gap but also, went deeper into the importance of storytelling.
Basically how communicating facts and figures in engaging ways, making the impersonal personal matters to spread a message.
Alongside the discussion, multiple comments on the chat were shared – many by different women expressing their own experience with being misdiagnosed or having a mother or husband who was unfortunately a victim of the data gap in research.
As people shared their personal stories, it was easier for someone with no relation to heart-attacks to relate in one way or another – after all, most of us can “try” to understand what pain would come with losing a loved one; and in this case, many did. Replying back comments of relatability, sending comfort or words such as “I understand”.
—
After the talk with Caroline, Hope insisted we stayed on to discuss not just the talk but our own personal feelings – I took this opportunity to express my thoughts about narrative and my own project. Unfortunately, this wasn’t recorded for ethical and privacy reasons and Hope mentioned that, if the time is found, she’d be able to send me written feedback about the project. I have send her an email with it as well.
Anyway, I expressed my project: I have caregivers on one side, patients and two objectives: awareness and/or support.
She used her own example, as a New York Times best-seller of the book Motherless Daughters, that highlights her own story with grief, after her mother passed away from cancer when she was 17.
She explained that during her university studies, she too had been given an assignment to develop a portrait project on someone or something and she had decided to do it on Bruce Springsteen and music of her generation. She said it was something that resonated with many and that was relevant to the time. However, what she noticed was that she would spend most of her time actually writing about a boyfriend she had the year after her mum died (also the year of a lot of Bruce Springsteen). What she noticed was that she had been with him because he was also going through grief during that period, and in a way – they’d found comfort in each other without necessarily talking about grief.
She had found herself writing about grief without knowing – and when she presented her essay project to the class, her teacher pointed out the project wasn’t about bruce and his music but instead, about grief and support.
She then used this base to start writing a book proposal and went on to collect 24 stories from different women going through the same grief of loosing a mother. What she realised is that some stories carried similar elements and others complete different ways, but what she thought was most wonderful was the idea that they found comfort in speaking to someone else who understands.
The idea of feeling alone during one of the hardest times of your life was something that Hope had mentioned was very relevant to her own story; and that when she created a book story she had initially intentioned it to be just about the other women’s stories and not her own. However, her teachers suggested that it was her story the conducting one and that to leave it out would be again, like the Bruce Springsteen case.
She agreed and drafted her proposal, this got her an agent and publishers interests – this served as a prompt to write the full book quite early on in her life after that project, and when published she mentions being contacted by so many women across the world, through letters, letting her know how much comfort and relatability and support her book brought to them. She mentions the book as her own intervention, along with the essay and the proposal.
In terms of feedback, I got to briefly explain my situation along with the idea of the book and the complex thought between building awareness or creating support and she expressed that by creating support I’d be ultimately building awareness. She also told me include my story as the conducting one, as proven with my research, people often need that push to open themselves up in the first place. Finally, she suggested once I have a first draft to send it over.
What I have learned from Hope’s trajectory
Much of Hope’s journey resonated with mine. Caught up doing a masters where I cannot back down from because of a scholarship and therefore, having to do it while being a caregiver has been complicated. And much of my headspace does not process focusing on other information that isn’t what my reality currently is. I have gone in cycles trying to understand what is it that I want to achieve? Who am I trying to help? What am I focusing on? Because I’ve gone through so many unexpected changes in a matter of six months that things can be a bit of a rollercoaster.
I find myself in most of my free time understanding how to deal with complex emotions, the other time I spend speaking to people who are going through the same and the other, reading up on heavy data hoping to find some optimistic journal to hold on to and finally, most of the time I’m supporting my mum with fear and love.
My writing was clear: it resonated with many people currently going through the same, being the main supporters of a loved living with a life-threatening disease.
However, there are little books about the caregiver’s cancer journey; how to support oneself, the other and how to keep your life going as well. The only available ones are few that discuss a lot of the technicalities but perhaps, little about the complexities of thought and heart.
The brief but intense and practical discussion with Hope helped me understand where my project could head, who it could support and how I could make it happen. This in itself, has served as a way to understand and validate the relevance of narrative as a tool of support. And to start feeling less guilty about not focusing on a theme which is not linked to my personal circumstances.
Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Conclusion:
My whole life I have been keen to help others, to advocate towards important subjects and most importantly, have been a firm believer in self-expression and compassion. Life has thrown a very uncertain situation my way, and in the way of many other daughters currently affected by this journey. I have come to understand, throughout this process of intervention, research and reflection where I’m headed.
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.
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.
