In 2021 I was diagnosed with cholangiocarcinoma, a type of cancer that forms in the bile ducts, which carries the digestive fluid bile, connecting your liver to your gallbladder and to your small intestine.
The doctor told me that my cancer was incurable, and I would only be expected to live for 6-9 months. During the appointment I was offered a couple of months of chemotherapy. I also first heard about research and the possibility of being a research participant.
After speaking with my children, I decided I would have the screening test, to see if I was eligible to be part of the study. This involved having a biopsy which was sent off for genomic testing.
Waiting for the results felt like a lifetime and all I could think about was my prognosis. I didn’t really have time for all the information to sink in. My children and grandchildren kept me going during that time, I was never on my own and we were making every second count, making memories as a family.
It was during a family day trip to Western Super-Mare when I was contacted by Sian, one of the Research Nurses at UHCW, who told me I was eligible for the study and arranged my first research appointment. We couldn’t believe our luck and, as a family, we were so happy.
Being in the study meant I had an equal chance of being allocated to the study drug or standard chemotherapy. I was enrolled onto the study drug. It was like I had won the lottery.
On 10th August 2021 I took my first study drug. I started to take this this drug every day for 3 weeks and then I get a week off. This has recently been dropped down to every day for 2 weeks, with a week off. I was told that I might experience some side effects from the drug. For the first couple of months, I suffered with sickness and nausea and a few other side effects that I had been made aware of. I also lost some of my fingernails and toenails, which wasn’t great, but in comparison I couldn’t complain.
In 2024 I celebrated my 3rd ‘birthday’ on the study with my 2nd family, the research team at UHCW. Dr Scott-Brown and Dr Sothi who have looked after me during those 3 years brought a cake and decorated the treatment area for me with birthday banners. I was even given a 3rd
birthday badge.
Without Dr Scott-Brown, Dr Sothi, Sian (my research nurse) and Rachel, Vicki, Sonia and Leila who are my research treatment nurses, I wouldn’t be here today. They have made my research experience a good one and have become family. I have documented my research journey by taking photos, which include the research team, and I have them as part of my family album.
Being part of research has not only given me more time with my family, but it has given me back my independence. I have been able to continue doing the things I love. I have always been an active person and enjoy socialising with family and friends. As well as my 4 children, I have 6 grandchildren between the ages of 2 and 12. Recently we have had a new addition to the family making me a proud grandparent of 7. After my initial diagnosis, I never thought I would have been able to see my grandchildren grow up, let alone meet my newest ones but I have, and I am very thankful.
Before this experience I thought research was about experimenting drugs on patients but actually it is a way to not only help yourself with your own diagnosis but also to help other people who may have the same condition in the future.
For anyone who is given the opportunity to take part in research I would tell them to do it without fail. I am still here today because I have taken part in research.