Lifehouse patient Brian Chudleigh shares his experience of participating in a clinical trial.
I was one of the first patients treated at Chris O’Brien Lifehouse the week it was opened, which was a wonderful experience. As an ex-school principal, I used to talk a lot about the culture and climate of a school or any working organisation: you can sense it almost in hours when you go into a place. And I’ve got to say, you can feel the culture in this place is triple A. It’s just absolutely wonderful – warm, caring, efficient, expert, and the environment is outstanding. I couldn’t wish for more. And the treatment and level of care here is excellent.
I began my first trial in 2010 with Professor John Thompson over at Royal Prince Alfred Hospital (RPAH). I had surgery to remove a primary melanoma from my shoulder but there was flow on into the neck glands. John suggested I participate in the trial to address the flow on. In one of my follow up scans two years later, a secondary was discovered in my lung and removed through surgery. I continued in the trial and the associated monitoring picked up yet another secondary in the hilum area (junction of the L & R lungs). Professor Thompson explained that surgery would not be an option this time as the location of the tumour was too close to other delicate parts of the respiratory system.
Professor Thompson then referred me to Dr Catriona McNeil to participate in this second trial. I was initially reluctant and my daughters were particularly concerned, but I didn’t think it was an option to go home and wait for the thing to take over. There were no choices: this was it. I called off a trip to the USA to get into the trial. It was really the only treatment option available to me at the time.
So far, this trial drug is having a very positive impact. I’ve had scans today, as I do every six weeks, and the tumour has shrunk again. It’s now reduced by 30% in 10 months. I remember Professor Thompson said that something like over 80% of patients on trials succeed and live far longer than people who are not on trials. Every fortnight I’m quizzed and physically examined; I’m weighed, my blood pressure is taken. If I sneeze they want to know about it. If I have any problems, there’s immediate support.
When we transitioned to Lifehouse from RPAH, a lot of the staff came over so there was a reassuring consistency of care. Catriona and her team don’t just focus on their specific medical function: they’re interested in the holistic picture. They’re concerned about you as a person, your lifestyle and your general wellbeing, so they encourage you to plan things like holidays. When I went on a cruise in Japan recently, the team even organised for doctor contacts in Tokyo. I had cards with me so I’d know where to go if needed. That gives you a sense of wellbeing and security as well but it’s also an indication of just how far the care extends when you’re in a clinical trial at Chris O’Brien Lifehouse.
Another positive aspect is the building of friendships and camaraderie with the people: with the nursing staff, with the volunteers, with other patients. It’s nice to have people who understand, people who are going through a similar experience. People know you. You walk in and it’s ‘Hi Brian, how are you this week?’ It’s a very receptive, warm, very comforting environment to come to. We chat away and joke and have a laugh. In the meantime, the cannula is going in.
Alison, my trial nurse, is wonderful. She’s critical in providing that link between my doctor and nursing staff. Everything is organised down to the nth degree, she’s always 10 steps ahead. You know that if you ever have a concern or problem or don’t feel well, you can just pick up the phone and call her. You feel that you’re being cared for, that you count and you’re important as a person.
I believe that I owe the last few years of my life to my participation in the trials without which it is highly unlikely that the two subsequent secondaries would have been discovered in time to allow the necessary intervention. I’m very fortunate. I feel confident that I’m in wonderful hands. Living in Kiama, a little country town, I’ve had close friends with cancer who unfortunately haven’t done well, two deceased in recent weeks. I wonder if they’d have had the opportunities I’ve had, if they’d be alive now.