New writing: That shitty google search I regret doing

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.

Hope Edelman’s trajectory and the importance of self-narrative in link to my project

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.

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:

Being in a cancer group for a week – observation

After much research done I’ve come to understand different aspects of the pain of being a patient who’s scared and uncertain about their future. Not just that about also a patient dealing with change, a withdrawal of a life they knew and the hard process of trying to accept their new reality.

Through being in a Facebook group for cancer patients and their caregivers I have been able to read their stories, sufferings, thoughts, what helps them and what doesn’t. I have seen a mix of hopefulness and hopelessness.

Some observations:

Most people seem to prefer tv shows more than watching movies for distraction. This is due to the length of what they’re watching and the effects of “the chemo brain”. Episodes are shorter and it helps with the shorter attention Spans and memory due to treatments.

Most people seem to find journaling and sharing their own story very helpful. They seem to seek comfort in others thoughts, empathy and prayers. In one of the Facebook groups I am in there are 41.2K members, in another 2k. This is a sign that patients and family members want and need community support through stories during such hard times. Most posts repeat the following words: fear, anger, anxiety, gratefulness, unfairness and change.

Breakdown of interventions:

  • Card deck with prompting questions to get to be able to discuss and open up with family members, caregivers, create a stronger connection through a hardship.
  • SunnySide* Film/hospital touring festival & platform; a platform of feel-good curated short films (no longer than 30 minutes) by fresh talent across the UK*/Spain (to decide). Ideally, they’d be screened in hospitals, either in the rooms for those who cannot go anywhere or as an event when possible. Otherwise, the option of making it solely a platform with whom patients in hospitals can access to with a password; there, they could have an option to journal based on the shorts they’ve seen. This would be curated by the help of psychologists.
  • A non-profit filmmaking organisation focusing on producing short stories written by cancer patients with the hope of offering a way to express themselves and seeing their own creation come alive with the help of young and socially conscious filmmakers and volunteers.* (partnering up with film schools, colleges, acting courses, hospitals); turning short stories into realities. (the money raised from screenings would go into cancer research)* (funding is important – how do we select the stories?) stakeholders: cancer patients, hospitals, family members
  • Inspirational platform of talks from cancer patients for cancer patients

I argue that a creative outlet that involves storytelling, communication and awareness could make an impact in cancer patient’s mental health. Whether that is by introducing a new project to be part of, seeing or achieving something they had not thought about before, unlocking their creative side, or by prompting them to communicate with their circle. Therefore, finding an intervention that can combine those elements and can remain an offline-online option to maintain inclusivity and broaden opportunities is essential.

The evolution of my question after a week multiple cancer Facebook groups:

[initial] How can creative entertainment improve the quality of life of hospitalised patients?

How to improve the effects of cancer treatment on mental health through creativity? 

How can creative entertainment support the mental health of oncologic patients? 

How can creativity improve the mental health of patients with cancer? 

[Current] How can storytelling support the mental health of cancer patients? 

key words: community, mental health, stories