Insights on Colorectal Cancer
Worldwide, colorectal cancer is the third most commonly occurring cancer in men and the second most commonly occurring cancer in women. This March, we bring awareness to this global disease by speaking to Kevin Thornton, Marketing Manager for PRA’s Global Marketing Team. He shares his family’s story about their experience of caring for a loved one with colorectal cancer and their experience with clinical trials through his mum.
Kevin Thornton, Marketing Manager for PRA’s Global Marketing Team, shares his family’s story about their experience of caring for a loved one with colorectal cancer. He also shares their experience with clinical trials through his mum.
My mum was wholly dedicated to her profession, which was being a mother to me and my two sisters, Claire and Fiona. She gave up a teaching career to pursue and excel in a career at home with her kids. My dad, Brian, meanwhile pursued a career with numbers, juggling tax consulting with fatherhood. They both did a stellar job (if I do say so myself!). My parents always encouraged us to do our best, to build relationships, and to look out for others. No surprise then that they raised a teacher, an occupational therapist and a physical therapist (my career in an old life!).
It was big surprise to us all when my mum was diagnosed with colorectal cancer at the end of summer 2004. Naturally our family, friends and neighbors all rallied around her. She told us she would fight it—she and my dad would do everything possible to beat it.
At that point, she hadn’t told my siblings and I about the prognosis. She knew that her diagnosis was terminal, as it was aggressive and had already spread. But with the right treatment, she could extend her life some. Her doctors had suggested she enroll in chemotherapy-focused oncology trials to give her the most amount of time possible. She was warned that it would be unpredictable and it would be very, very tough. Pain and fatigue would become a part of daily life and there would be more tough days ahead than easy days.
Still, she chose the clinical trials and to fight. To fight for us. Like a lot of mothers out there, her children meant everything to my mum. Whilst my sister Fiona and I had successfully navigated through school and were on defined career paths, my youngest sister Claire was only 8 at the time. Mum didn’t want Claire to lose her mother so early in life. She knew what that was like because her own mother had died young. So, she chose to fight. She chose to put herself through those rigorous treatments. She wanted to give us hope for as long as possible; to make us believe that things were “okay” and things would get back to “normal” soon. She also knew that the trial could lead to further treatment for future patients. We thought these trials would be her best chance for survival. She chose to take that chance—for us and for others.
She wanted to give us hope for as long as possible; to make us believe that things were “okay” and things would get back to “normal” soon. She also knew that the trial could lead to further treatment for future patients.
I was in college at the time, attending the National University of Ireland, Galway, which is associated with Galway University Hospital, where mum was receiving her treatment. That hospital provides the chemo, oncology, and radiology services for the entire western region of Ireland. My family is actually from Galway City, so her treatments on weekday mornings were close to our home and right by my college. Some patients from more rural areas sat beside her on those long days. Some had to make up to a 5-hour round trip on public transport to get their regular treatments. I was lucky to be able to visit her between lectures, spending precious time with her.
The clinical trials were hard. They were putting some serious drugs into her system to fight this thing. She always seemed to be in good spirits though—always chatting and laughing with nurses and other patients. We’d often hear her laugh from the hall on our way in to visit her on the day ward. Often, at the end of her treatment day, either my dad or myself would have to drive her home as she would be too tired to drive herself. Her side effects extended beyond the usual fatigue and hair loss associated with cancer treatment. Her skin throughout her body regularly broke down and she required close care and nursing because of it. I’m sure there were other symptoms too. She chose to keep those to herself and suffer quietly within. She didn’t like to bother people and she didn’t want people fussing over her.
At that time, she took up painting as therapy. It took her away from her treatment and worries. She was amazingly productive, creating many quality paintings. These are among our greatest treasures of her now. She chose to put her energies into something proactive and positive rather than dwell on the negative. That’s why, when she realized just how much of a struggle it was for people from more rural areas to access and receive their oncology treatments, she chose to do something about it.
The clinical trials were hard. They were putting some serious drugs into her system to fight this thing.
A Small Act for a Great Cause
My mum wanted to help these people by building both a support network for them and fundraising for a charity that benefitted them. The charity is called Cancer Care West. It provides psychological and practical support services to cancer patients, as well as family members and friends who have been touched by cancer.
The biggest service they offer, and the one most important to my mum, was through their residential facility on-site at her hospital. To her, this facility removed the massive burden of cost, travel, accommodation, and related stress from the patients who lived far away from the hospital. She made it her focus to do something to support it.
The perfect fundraising opportunity arrived on her lap when my friends and I decided to swim the famous Galway Bay, a 13km swim from County Clare to County Galway in Ireland. Through her energy and fundraising efforts, we managed to raise approximately €16,000 for Cancer Care West that first year. In fact, it was so successful, we decided to make it an annual event.
For three more years, she was a pivotal cog in its wheel, hustling and bustling year-round for sponsors and donations. She made time and energy for the event around her busy schedule of being the best mum, a wonderful wife, and a diligent patient who attended all her doctor’s appointments, chemo treatments, surgeries, and more.
Eventually though, she started to slow down. The cocktail of potent drugs and the growing cancerous cells was taking its toll on her. As she withdrew, we rallied around. Now, we would be the ones providing the positivity and proactive support. We would care for her as she had cared for us. We would support her as she had supported us. She fought a long and hard battle for three years, but eventually she succumbed. Her light went out on April 21st, 2008. In her final days, we were determined that she would be cared for at home. That’s exactly what we did, with the help of family, friends, and the wonderful palliative team from the hospital.
My Mum’s Story is More Than Just Research
My mum’s clinical trial process was tough for my whole family. It’s not just because of the physical and emotional toll it had on her, but because we just never felt we knew enough about her progress and prognosis. Like all caring family members, we were thirsty for updates on her health and yearned for snippets of information on how the drugs were affecting her. Often, though, our queries were addressed with a very typical and generic response. It didn’t feel like we were a part of the process—just in it.
Due to her severe reactions to the new drugs, mum had photos taken of her by the scientists and clinicians involved. Catalogued and marked to help inform future drug development. I’m told that they are in a book somewhere. I think of it occasionally and I wonder where that book is now? How is it being used to inform what’s being done now? I’d like to know how her experiences helped contribute to and shape that drug’s development.
In an ideal world, it would have been nice to have known whether the researchers got the outcomes they were looking for. From a personal level, it would have been informative and comforting to get some of that feedback from the medical team. It would have been nice to know what they learned from what my mum went through. We wanted committed and informed answers to our many questions, but the medical team just couldn’t give us that. That’s not how it works. I understand that now. From my knowledge of clinical trials and of how the drug development process works, I understand the regulatory and ethical reasons why certain information can’t be shared. I understand too the pressure that medical teams are under to get the job done. With all that said, I’m thankful for the opportunity and the extra time that this trial gave us.
When I think about what my mum went through, and how I ended up here at PRA, I feel like I’ve come full circle. Drug development companies are now taking a more patient-centric approach, and the patient story is just as critical to a clinical trial as the actual research. This is being recognized right here at PRA, specifically through the work by our Centers for Rare Diseases and our Center for Pediatric Development. It’s something that I’m proud to help represent through my own role at the company. I’ve been given the opportunity to tell stories about clinical trial work and of clinical trial patients- stories that have a real impact on the lives of the participants in this research.
Like all caring family members, we were thirsty for updates on her health and yearned for snippets of information on how the drugs were affecting her.
Thirteen years after her death, my family and I continue to be guided by mum each and every day. She found positivity in everyday life and found proactive ways to work through the tough times. That’s an important part of what my family experienced and what we take forward with us in life. It’s one of the things we remember about her the most.
There is another lesson, though. Towards the end, she told us that if she had detected symptoms earlier, she could have caught the cancer at a more treatable time. She could have had the opportunity to act and beat cancer. So, the lesson for us all is to check ourselves regularly, and act on any irregularities, even if you are physically asymptomatic.
Talk to someone and take action. If you’re noticing symptoms or something that’s out of the ordinary, don’t be afraid to talk to a healthcare professional about it. They’ll give you an open environment to talk. It’s something I think everyone should take advantage of, if they need to. By talking and taking action early, it can save your life.
We renamed our annual swimming event the Frances Thornton Memorial Galway Bay Swim and it continues today. The swim is an extension of her vision—it not only helps bring together cancer patients, but individuals and families who’ve been affected by cancer, too.
At the swim, we all have a common cause: to help those experiencing cancer directly, and to help family and friends going through it. It makes them feel safe and motivated. This feeling has helped build and grow a worldwide community of swimmers and indeed build and grow the swim. To date it has raised over €1.1m for Cancer Care West. It’s something our family is proud of and something I know that mum would be proud of, too.
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