“Riveting” and “stimulating” are two words I’d use to describe the Beating Prostate Cancer Roadshow that I went to in London on 3rd May. It started at 6pm and finished at 9pm, with a half hour break when we were fed and watered. If three hours sounds like a long time it wasn’t, it flew by, helped along by some very interesting speakers who didn’t try to blind anyone with science.
I wasn’t sure what to expect as I’d never been to anything like this before so I called in advance to ask if it was for patients. I didn’t fancy being the only one in a room full of boffins who didn’t speak Medicalese. I was assured the event was for everyone affected by prostate cancer – patients, carers, health professionals, the lot, and it turned out to be just that with a good mixture of people.
There were eminent professors and surgeons and other assorted experts but there were also people like me who had had to learn fast what a prostate cancer diagnosis means. In our own personal ways we, too, were experts and, as it turned out, the ones in the “eminent” bracket were as anxious to learn from those of us directly affected by the disease as we were to learn from them.
I heard about a few clinical trials and learned loads about what’s happening in trying to find a cure, but the big thing I discovered (big for me, I mean) is that clinical trials are for every patient. I thought that you were only offered a clinical trial if the doctor thought regular treatments wouldn’t work for you or that you were about to pop your clogs. I wasn’t the only one there who thought that clinical trials had an image problem. I reckon the medical research people and health professionals have a lot of PR work to do to get the correct message out to patients, particularly if they want to attract more of us on to trials.
In addition to the specialist speakers there were information stands, too, including Prostate Cancer UK, Cancer Research UK and the Medical Research Council and APPLE. No, not the Apple, but the Association of Prostate Patients in London and Essex. There were others that had info on a couple of current clinical trials – CHHiP and PATCH – but the focus of the event was the STAMPEDE trial. That was the main reason I’d gone, not because I’m going on to the trial (I’ve been told I don’t quite qualify) but because of something that’s come from one arm of it, the arm that gives Docetaxel (chemotherapy) at an earlier stage than usual. If my PSA continues to rise I might be starting Docetaxel in the summer so I thought this would be the ideal opportunity to find out more about it. As a bonus, I think I can pronounce it correctly now, as well.
There was also someone at the roadshow from the Royal College of Music who was looking for people affected by cancer, not just patients but carers, bereaved and staff, who wanted to take part in a research study exploring the effects of music on the experience of cancer. I was asked if I’d like to join a choir. I can’t sing to save my life (no pun intended) but was told that not being able to sing was no barrier to this particular choir as no musical experience is required, so I’ve put my name down for it. Next stop the Royal Albert Hall? Highly unlikely. I don’t think they realise just how bad my voice is.