Living and dying with oesophageal cancer

It was the end of 2014 when my mum was diagnosed with oesophageal cancer. As a family, we had never heard of the disease before and were completely unprepared for what lay ahead. Naively, my first thought was that it couldn't be that bad if I'd never heard of it. Reality quickly shattered that assumption.

Stepping into the role of an informal carer, I gained firsthand insight into the critical importance of research and the harsh realities when it falls short. I came to realise that lesser-known cancers, like oesophageal cancer, receive much less research funding and attention compared to their more widely recognised counterparts. On the ground, this disparity translates into a lack of understanding, support, and resources, exacerbating the challenges faced by families like mine.

Becoming my mum's informal carer was undeniably the toughest role I've ever taken on. Whilst I will admit that I am grateful for the meaningful time and sense of purpose that it gave me, seeing my vivacious mum lose her energy and sense of self was soul-destroying. The focus was on physically treating her. She powered through her chemo, knowing she would be bedridden in the days that followed. I did my best to support her, emotionally and physically, but I can remember feeling like we must be the only people navigating an oesophageal cancer diagnosis; no one had heard of it, and no one understood. That made it an incredibly isolating experience.

From uncertainty to university

The thing is, there is so much more to an oesophageal cancer diagnosis than physical symptoms. Take, for instance, a common symptom: difficulty swallowing. Beyond the physical challenge, consider the implications of no longer being able to enjoy your favourite foods. Socialising, and celebrating with family and friends, birthdays, Christmas – all these moments of joy are jeopardised when you can't eat and drink.

After she died, less than a year after diagnosis, I really struggled to come to terms with my loss. Adding to my grief, my dad, who had Parkinson's disease, deteriorated quickly without my mum's care and he died just six months later. It's difficult to articulate just how devastating it was to lose both parents within such a short amount of time at just 25 years old. It felt so surreal to see the world continuing as normal, while my own was at a standstill. It's not until you lose your parents that you really understand the sense of stability and security they offer, and the central role that they play in shaping our identities.

Personally, the experience left me with a profound sense of uncertainty about my place in the world. I knew that if I was going to cope, I needed to channel my despair and grief into something tangible. I couldn't help my own parents, but I wanted to use my experiences to help others. I committed myself to raising awareness of the disease and its signs and symptoms. I started volunteering with a small patient association made up of a handful of people who had also been affected by oesophageal cancer. In the years that followed, this small group became a recognised charity – OGCancerNI – that provides support to anyone affected by oesophago-gastric cancer.

In my time volunteering, and now as a committee member of the charity, the experience solidified to me that there really was not enough of an understanding of the toll that living with oesophageal cancer takes, especially for those diagnosed at an advanced stage. Many of the patients I met felt let down, and afraid, while their carers struggled to know where to turn, and what to expect. It was all too familiar. I knew there was a need for more support, but when searching for how we could provide it, I found a glaring absence of information on the unique impact of oesophageal cancer. I knew that if we were ever going to provide adequate support, then we needed to know much more than we currently did, and that is what led to my return to university to undertake a PhD in Health Psychology.

Dual hats

Over four years, I immersed myself in understanding the impact of the disease. I wanted to understand every aspect, and since so little had been done in the field, it made sense to build up a more complete picture of the effects that the illness has on all domains of quality of life – physically, psychologically, socially, and existentially.

The result was a very thorough and in-depth understanding of the experience of living and dying with oesophago-gastric cancer. Conducting research as someone with lived experience came with both benefits and challenges. On one hand, my 'insider' perspective fuelled my motivation and commitment to the study, enabling me to approach the research with authenticity, empathy, and a genuine desire to contribute to meaningful change in the field. I used qualitative longitudinal research (QLR) and our shared experiences helped me to build trusting relationships with the participants over time which led to richer and more authentic data. On the other hand, undertaking this type of work required a significant emotional investment and as I listened to some all-too-familiar experiences, I became aware of my emotional vulnerability, and I'm sure the participants did too. Maintaining a delicate balance between my 'dual hats' has been an ongoing process, requiring constant reflective practice, boundary setting, and a dedication to upholding the integrity of the research.

Having recently graduated, the path ahead feels uncertain. However, for now, my focus is on publishing my findings and continuing to promote discourse around this under-represented disease. My hope is that my data and findings will one day contribute to the updates of clinical guidelines for oesophago-gastric cancer management, advocating for a comprehensive 'whole person' approach to care and support.

Additionally, a core area that my research spoke to is the need to care for the carers. With our NHS as overstretched as it is, informal carers are shouldering an increasing burden of responsibility. Yet, whilst carers accompany their loved ones to medical appointments, the focus is rarely on them. They're on the sidelines, providing support with little recognition or acknowledgement. The effects of this are amplified when caring for someone with a lesser-known illness. Given the value they provide, we need to continue using research to amplify their voices and showcase their needs. Only by doing so can we urge our government and policymakers to acknowledge that investing in support for carers is not only a moral imperative but also crucial for sustaining an effective healthcare system.

Paving the way for positive change

As a (very) early-career researcher, navigating the landscape of research impact and the pressure to deliver tangible outcomes on policy and practice can be daunting. I confess that throughout my PhD study, I received no formal training on maximising research impact. When someone first mentioned the Research Excellence Framework (REF) to me, I must have looked blank – I had never encountered the term before. As I prepared for my viva, the nagging worry that my 'contribution' wasn't enough gnawed at me. It wasn't until a conversation with my husband, a non-academic, that I gained a fresh perspective. 'Surely,' he said, 'you can see the potential impact of your research?' His words struck a chord; his referral to 'impact' wasn't intentional, instead, he was reminding me of my original motivation for pursuing a PhD – a journey shaped not by academic convention, but by personal experience.

And so, now, when I find my imposter syndrome whispering that 'achieving impact' is reserved for those with more experience than me, I find solace in the knowledge that my contributions have played a small part in enriching the evidence base, potentially paving the way for positive change. Had I known then, what I know now, I truly believe that my mum could have been diagnosed earlier, or at least received more tailored care. Indeed, with research comes increased knowledge, better informed policy, and ultimately, improved care. And if my experience has taught me anything, it's the transformative power of research when approached with empathy, compassion, and a clear purpose.

About the author

'My name is Cara Ghiglieri, and I am a mixed-methods researcher with interdisciplinary research interests in Psychology and Public Health. I completed my PhD in Psychology at Queen's University Belfast, in 2023, where I explored the experience of living and dying with advanced oesophago-gastric cancer over time. I am particularly interested in the process of adjustment to chronic illness, and ways we can support patients and carers to live as well as possible. 

I currently work as a Research Fellow in the Epidemiology Group at the University of Aberdeen, where I am involved in the CSO-funded Making it Work™ - Scotland project, which looks at how we can support people with musculoskeletal conditions to remain in work, if they wish to. The project involves working closely with public contributors throughout, something that I am particularly passionate about.

I hold Graduate Basis for Chartered Membership (GBC) of the British Psychological Society (BPS), Associate Fellowship of the Higher Education Academy (AFHEA) and I'm a postgraduate representative for the NIBPS and committee member of OGCancerNI.'