My name is Lana Cook, I’m 34 and I grew up in Ayrshire in Scotland but now live in Belfast. I first moved here 11 years ago to study adult nursing, so Northern Ireland is my second home, but I’ve also spent some time in the USA and Canada too.
My PhD is called ‘Exploring the Lived Experiences of People Diagnosed with Pancreatic Cancer in Northern Ireland’. I’m in my second year now, so one year done and at least two more to go! I’m at the stage of waiting for final ethical approval for my study and once I get the green light, I’ll begin recruiting people who are willing and able to share their time and experiences with me. All being well, I’ll start interviews in January 2025.
Over the next year, I would like to speak with people who have been diagnosed with pancreatic cancer, care partners and family members, and other people who have fed into the journey at some point in a professional capacity, such as health care professionals, advocates, chaplains, or support workers. This will help me to understand the lived experiences of people diagnosed with the disease in Northern Ireland.
Ultimately, I want to create a theory to explain their journeys, from pre-diagnosis to treatment and beyond to either survivorship or end-of-life. The research approach I’m using is called ‘grounded theory’ which means I’ll learn from the people who participate in the research, not just about them. I’ll begin by listening to people’s experiences, and the theory will emerge directly from what they share with me. In that sense, my PhD is about listening, learning, and building our understanding of the experiences of people diagnosed with pancreatic cancer from the ground up. Their insights are what it’s all about, really.
The outcome of my research work will be the creation of that theory to help researchers, clinicians, policy makers, and organisations to better understand the priorities for future work in this area, especially around the care and support provided to people who have been impacted by a diagnosis.
By taking part in this research and giving voice to their own lived experience (or the experiences of the people they’ve supported), participants could play a crucial role in advancing understanding, support, and care for those diagnosed with pancreatic cancer. I believe if we can better understand what’s going on for people during their pancreatic cancer journey, and have an evidence base underpinning that understanding, we’ll be in a better position to be able to move things forward, design appropriate support interventions, and address unmet needs.
Two of my best friends have lost their uncles to pancreatic cancer and one of my cousins in Scotland was diagnosed at the age of 39. This has made me more aware of the impact it can have on people and their loved ones, and how shocking a diagnosis can be, especially when someone has, up until that point, been considered fit and healthy.
It’s also given me more understanding of how devastating it can be when people don’t get much time after a terminal diagnosis — and even when they do, how tough that journey can be for everyone. It’s taught me a little about how people live with the fears of cancer recurring or progressing, and what it can be like to live with that uncertainty and sense of losing control, as well as some of the symptoms.
In terms of my research, that’s useful because it means I’m a bit more prepared for what people might share and the need to be flexible if participants aren’t feeling up to it on the day and we need to reschedule meetings and interviews. This awareness also motivates me to get out there, meet with people, hear about their journeys, and learn from them.
However, despite these personal insights, I am approaching my research with an open mind. My findings can’t come from my own assumptions, only what people tell me.
During my undergraduate degree, we learned about trauma, and I remember a man coming in to talk to us as nursing students about his pancreatic cancer journey and survivorship. He was more than five years post-diagnosis at that point, and his story has always stayed with me and shaped my awareness of the trauma associated with a cancer journey, especially when it’s a less-survivable cancer. To be honest, I didn’t really have much awareness about pancreatic cancer until that day; so many people (including healthcare professionals) don’t have it on their radar.
I went on to graduate from Queen’s in 2017 with an honours degree in adult nursing and did a research studentship looking at palliative care for people with advanced dementia before taking up my first nursing post in the Regional Intensive Care Unit in Belfast. For the next few years, I worked as a critical care nurse and ad-hoc as a research assistant on the side. I took a career break and moved to Canada in 2020, and I ended up working remotely as a research assistant from 2021 until I was approached about this PhD in 2023.
I’d considered PhDs in the past but wanted to wait until it felt like the right time and the right project for me to commit to one. This was it! Pancreatic cancer kept knocking at the door in different ways, and although I was enjoying working in academic research, I was missing feeling connected to people in the way I had as a bedside nurse, so it seemed like the right project that brought elements of both.
I first heard about NIPANC through Dr Gary Mitchell at QUB who helped develop the charity’s Serious Games project. I soon learned that NIPANC are truly engaged and invested in improving the lives of people affected by pancreatic cancer and this adds an extra layer of meaning to my PhD experience. At the end of the day, you want your work to make a difference to people and have a positive impact, and NIPANC seem to have a knack of taking the ball and running with it. I first met Susan Cooke from the charity when interviewing for my PhD and I was struck by the strength of her passion for improving care and support for people affected. After I accepted the PhD, I was invited along to the NIPANC ball and what a lovely night that was. I felt so inspired and humbled by everyone’s efforts and stories. I feel blessed to have joined the NIPANC family.
I would describe my PhD experience so far as a bit of a rollercoaster of learning, full of challenges and opportunities — like any period of learning and growth. I’ve got another couple of years to go but I’ve learned so much already, grown as a researcher, and I’m now at the point where I’m almost ready to start recruitment.
This is the part I’m most excited about: meeting with people, hearing about their journeys, and learning from them. Some have shared aspects of their stories with me at NIPANC events, and working with the charity means I’m aware of what’s going on in Northern Ireland in a wider sense. That makes me so motivated to do this work, as I know it’s needed.
If you’re interested in finding out more about my study, NIPANC will be posting more about it on their socials and newsletter once we’re ready to recruit. Watch this space!
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