I don’t know anybody who’s gone on a trial and regretted it afterwards. I do know some people who have not expressed any interest at all in a trial. That may be because they are attending hospitals which are not collaborating with research institutions, and therefore offer no trials. Still, even if, ideally, patients should expect to be encouraged to participate in trials by doctors, when clearly they haven’t responded to the standard treatment, sometimes one has to take matters into one’s own hands and look for an attainable treatment on one’s own. That is how I became interested in my trial that I’m in at the moment.

Well, I got a letter through the post inviting me to take part in the trial designed to answer questions about the effectiveness of screening for ovarian cancer. There was a leaflet attached to the letter, which I read, but the information really wasn’t sufficient enough for me to make a decision. So I replied saying that, in principle, I was happy to take part, but I’d like the trial organisers to send me a copy of the full protocol. After having read the full description, I decided I would take part in the trial.

Just before Christmas, I went to a major hospital and had an appointment with one of the oncology team members. I also saw a professor who was leading a trial. They explained the facts and went over all the surgeries I’d had. Eventually, I was offered the chance to go into this clinical trial. Everything that we said was taped, so I could go back and listen again to all the things the professor had mentioned. I had all the information in writing as well, which was really helpful. So after a discussion in the family, having received great support from my children, I decided to go into the trial.

After the initial contact with the research team, I received a phone call and was scheduled an appointment. Quite a few appointments, actually. At the last one, they took my blood tests as part of a fairly basic medical overview. When the results came back, it turned out they were below the level which would qualify me for further research – I fell into the category which would have been negative as far as they were concerned. So I didn’t go forward to actually taking whatever they were prescribing, whether it was pills or drugs. That was the end of my adventure with research trials.

I thought about whether I’d be getting a new drug or a placebo, but it didn’t matter to me, because I really just wanted to be part of the trial. I thought it would be interesting to see how I would react in that situation, because, as they say, you are influenced by your mental state at the time of treatment as much as by anything else. So I’d be interested to know whether I was one of those people who were influenced or not. So, no, the risk of being given a placebo didn’t concern me, and I made a positive decision to go ahead regardless.

The drug company did compensate my costs of participation in the trial. The first two sessions I attended were weekly, and I had to spend the whole day there. I explained that I was a full‑time employee and I needed an appointment either early in the morning or at the end of the day, which proved impossible. They reimbursed me for my leave of absence. Also, in addition to the compensation for the lost income, they actually paid my petrol money, so it was a very fair deal.

Yeah, I just took the pill out of a transparent glass jar. I didn’t know if I was taking sugar or the real thing. And it was marked up, it was coded, each one was coded with my own code number and the trial number. Eventually, at the end of the trial, both us and the doctors learnt which patient had been taking what, but, no, not during the actual trial.

I have never thought of dropping out. I thought, “If I’ve taken part, I might as well finish it.” Yeah, no point in going halfway and then pulling out, because the research would probably flop.I think if one is to take part in anything, they should go all the way, instead of leaving it halfway. I don’t believe in unfinished business. I wouldn’t ever break a given word, either!

At the point when the trial ended, I felt a mixture of emotions – feeling a bit sad and quite happy at the same time. It’s because I’ve almost become friends with people on the team over the last five or six years. I preferred going through this trial, you know, rather than undergoing standard treatment with my GP. Once you’re off the trial, and you’re not really under their control any more, you’re back with your GP anyway. I’ll try and keep in touch with my patient group, in case I’ve got any problems and want to refer back to the trial doctors.

When the findings had been analysed, they sent me the report with a cover letter saying: “This is the report that we’ve made,” you know.  And it gave me an overview of what the results were, so that I understood any medical jargon that was in the report.  What they sent to me was very clear, so I understood the results entirely. And, we had a big meeting about three or four years ago, in which the researchers told us that based on what our trial established, certain drug companies were now preparing to introduce, you know, a new type of medicine.