Ken McBride made time to give his voice to Cancer Digest, and we will borrow his story to illustrate our work and our drive here at the PGJCCR. He drove to Belfast specifically to lend his contribution, and I was much busier listening and sipping tea than I was focused on taking notes… but do take note of his message, to which I will try to do justice.
Before we made our way into the coffee shop, and before I even asked anything else, Ken offered his first insight: “let me tell you, Cristina, that I don't think the PGJCCR does itself justice. Until I joined the NI Cancer Research Consumer Forum I really had no idea how much work happens in there”.
That was not just a wakeup call for us at the PGJCCR, that message reinforced the value of this project in the first place: that of doing justice to the research developed by our specialists, our stakeholders and budding scientists that may want to join us in the future.
Ken has been candid and generous with telling the story of his shock at what was delivered as a hopeless and fateful diagnosis of prostate cancer in 2015, but also at how it all turned around by the competence, kindness and open communication with the team that treated him at the Cancer Centre. You can read his story further here.
“Joe was great”, Ken says referring to his consultant, our very own Professor Joe O’Sullivan. “He was so kind. He laid out all the possibilities, explained everything to me very clearly. I wanted to know how do I beat this? How does this treatment work?”
Ken was treated primarily with hormone therapy. Hormones can drive cancer cell growth, so hormonal inhibitors can be used to remove that growing signal and cause the tumour to shrink; “then we just zap it, Joe said”. And that was done with no less that 37 (!!) cycles of radiotherapy (“this is typically lower now”, Ken says knowingly).
Ken is fascinating in how he can step from his place as a patient to one of a pupil who became intrigued by the technology, the precision, and the effectiveness of a treatment that ultimately saved his life.
Side effects? “I didn’t have any side effects from radiotherapy”, says Ken. “I do have a lot more side effects from hormone therapy, some that are very frustrating.” An avid cyclist, he was unprepared for his body to change. “I had to become familiar with those changes, I get more tired, the body fat distribution changes”.
But Ken reinforces one aspect often: “I kept thinking how much research came before me, to get me to a place where my condition was treated. I became passionate about research, that it needs to keep going, that it moves fast and needs to be supported, and that is why I will do everything I can to support that, and the main reason I joined the Northern Ireland Cancer Research Consumer Forum”.
There are many instances where Ken has demonstrated is drive to participate and contribute, and the warning comes again at the end of our chat: “if people knew how much amazing work you do at Queen’s, it would raise eyebrows”.
Ken made suggestions on improving communication with the public on what happens in the PGJCCR, and I have found yet another ally in the quest to reveal what our scientists and students develop, discover and implement to improve the lives and outcomes of cancer patients.