What is a clinical trial? – Participant highlights – Part 1

With the clinical trials, I have been their number one priority, and they have basically made sure that I've been comfortable, and they've looked after me very, very well. For anybody you will feel a little bit apprehensive about ‘Will it help me, or won’t it?’, but I've gone into this with, a positive attitude. You know, the advancements in the drugs over my time, my journey, it has accelerated. And if I can be that tiny piece that might help find a cure and find a reason for MS, I'm quite excited about that. But he explained the importance of clinical trials and explained that without them, the treatments would not improve. It might not benefit me, but it will definitely benefit generations in the future. And given I have a daughter, that was one thing that sort of made me consider the clinical trial.

He did explain it in great detail, and he gave me time to go away and think about it. My husband was with me at the time, so we discussed it at length, and we just decided that if there was anything that I could do or we could do as a family to improve outcomes in the future, it was worth doing. Late last year, because I was finished on the trial and I was passed my five-year diagnosis, I had to say goodbye to my oncologist and the whole team in there, and it was actually probably the most emotional I think I've been throughout my whole journey because they became such a part of my life.

The only difference from being in the clinical trial or not, was that I would have an extra level of people to talk to, if you like. I would have my GP, obviously I would have the oncologist, but on top of that I would also have the clinical trial staff. And that's one thing that I found to be of use. I was better able to ask them questions about what was going on, what this meant, what that meant. Because of that, then we were able to deliver that comfort. I think that was vitally important. One of the clinical trial nurses had been a cancer survivor as well. So, she had some perhaps even better rapport, if you like. Medicine is advancing all the time, but it can only advance, with help from the patients. It's all very well the scientists and the doctors coming up with new treatments. But until they try those treatments, then they're not going to know with any certainty whether those treatments will be successful.

Because I was in the clinical trial, I had probably more tests than I might otherwise have had. The CT scans went on a bit longer another couple of years, and I guess that was another comfort, if you like. Anyone considering a trial, be as open as you can and receptive because this is something that the greatest doctors and nurses in Australia are offering you, and the more that you can be willing to participate in the trial, it can only benefit you.