Esther Harding (EH) spoke to Ruth Boyd* (RB) in the Northern Ireland Cancer Centre, May 2018. Esther is 69 years of age, lives in Northern Ireland and is married with 3 sons, 3 daughters-in-law and 7 grandchildren.
RB: Hello Esther, thank you for speaking to us about the MErCuRIC study. How long have you been taking part in the MErCuRIC trial?
EH: I am just in the second cycle of treatment in the study, so I do not know yet if the trial drugs have had any beneficial effect or not. I went on the study after I was told the cancer was in my liver and lungs and at the moment there is no suitable chemo for me. I was asked by one of the doctors involved with me if I would consider taking part in a clinical trial. The MErCuRIC study is for the stage of cancer I have and I was suitable as my primary cancer was in the bowel.
RB: What motivated you to take part in the trial?
EH: I have had the benefit of treatments and procedures and knew others had undergone trials towards these, also I know how important research is. I hope this trial proves to bring positive outcomes to those diagnosed with this type of bowel cancer in the future. My husband and I thought and prayed about it, faith is a big part of our lives, and although it was in my mind to say yes, I had to take into account what my family felt. They all thought, as my quality of life was good at the moment, it would be worthwhile to take part. They encouraged me in my decision and said to give the trial a go as I could pull out whenever I needed to, or if there are adverse effects it will be stopped.
It was reassuring the two drugs were already licensed and a placebo was not involved.
I was definitely motivated to take part if I was suitable. The process of finding out about suitability takes about 4 weeks, so I never felt under pressure.
RB: So when were you diagnosed and what treatment have you had already?
EH: I was diagnosed in December 2012 following colonoscopy after 7 months of various investigations for weight loss, headaches and then vomiting. I had bowel surgery in February 2013 and liver surgery 3 months later. Thankfully both consultants were excellent and very pleased with the outcome of my surgeries as my prognosis had been very dire. I then had 3 different types of chemo over the next 4 years and the last one before the trial was Lonsurf®. I was the first person in NI to receive this drug when it became available, and I got that for 9 months.
RB: What impact has cancer had?
EH: I had worked in administration and looked after grandchildren a few days a week. In general, I was very active. Up until I became ill I had been a hospice volunteer for many years which I loved. I enjoyed gardening and was involved in church life. Because I was very weak, all these activities came to a crashing halt.
Cancer changes individuals, but the impact on family life is huge. One of the most difficult parts is knowing all the folk who care about you are anxious and sad.
About early 2013 there was a Macmillan advert. It showed a few different scenarios of people being given news of cancer, and as they walk out of clinic etc. it looks like they are collapsing, legs giving way. Suddenly the hands of a Macmillan nurse appears to help– that’s the best representation I have seen of what it’s like to get the news its cancer and the importance of being offered help and advice.
RB: What’s it been like being on the MErCuRIC trial?
EH: I’d been ‘treatment free’ since before Christmas so I had tasted a bit of normality. Going on to the trial means you are back to hospital appointments, procedures and tests. A big reminder of cancer! It becomes quite an intense part of your life. At the start of the study there were biopsies and an overnight stay but now I know I generally now have a visit once a week. The upside of this is you are monitored so much – so if anything changes you know it’s going to be picked up, and if I don’t feel well I know I can say that. I have a PICC1 line for blood samples. I feel tired but it’s a general tiredness, it’s not like the fatigue I’ve had from chemotherapy before. A rash has been the most surprising side-effect of the treatment for me. The tests and biopsies have been grand.
Everything about the study was explained, nothing is hidden. It’s very open. My husband has been with me a lot. We have joked that at the end of this we should go and do a degree!
The doctors explained everything and the nurses have been brilliant. The staff are so good. When you are very ill you realise how important staff are and what a difference it makes when they are compassionate.
RB: Thank you so much for sharing your experience of taking part in this study.
1 PICC – Peripherally Inserted Central Catheter (inserted into a vein)
*Ruth Boyd is Cancer Research UK Senior Nurse in the NI Cancer Trials Network (NICTN) based at the NI Cancer Centre, Belfast HSC Trust, and is Personal and Public Involvement Professional Lead for the NI Cancer Research Consumer Forum (NICRCF). Belfast HSC Trust is a partner organisation of the MErCuRIC project funded by the European Community’s FP7 programme (contract #602901).