Trials and macaroons

I do always try to be fair on this blog: to report my experience on the cancer conveyer belt accurately , while trying to see the points of view of others. There are people I have praised to the skies, and people – St. George’s Oncology Department, I’m mostly looking at you – who I definitely haven’t. Overall, I think if I had to sum up my experience of the professional cancer people I’ve met, I would say: mostly good, apart from pockets of soul-destroying awfulness. (Remember this? And this? And this?)

What I forget, of course, is that the patient perspective is a pretty straightforward one. I have a disease: you will tell me what you think will cure me: I will go along with it, unless the cure becomes unbearable, or turns out not be working, in which case we try something else. Thinking about survival makes everything black and white.

But for those at the other end of cancer treatment, it’s more complex. I found out a lot more about this in a rather sublime setting on Monday – eating macaroons (the vanilla was best) in La Duree in Harrods department store in London. I was meeting with Emma and Anne-Laure, who are involved in the Persephone drug trial, which is looking at the efficacy of 6 months versus twelve months of Herceptin treatment.

I was approached by Emma shortly after I wrote about stopping Herceptin. She asked me if I would contribute to a leaflet; I asked if she would answer some questions. We’ve been in touch ever since, and we met to talk about how I can support the Persphone trial.

During the course of our meeting, I got an insight into just what clinicians and scientists trying to further cancer treatment are up against. We talked about recruitment, about ethics, about data protection. We discussed making literature both patient-friendly and scientifically accurate. I found a bit about the hoops that researchers have to leap through to get a trial (a)designed (b)approved (c)underway (d)completed. Let me tell you, many of those hoops are on fire. Which is right and good, of course. Without this kind of rigour, results are meaningless, and it’s good to see respect for patients so high on the agenda.

Not that Emma and Anne-Laure were complaining. They were just explaining. And as they did, I thought about how it’s a miracle, really, that any trial anywhere happens. The Persephone trial is looking for 4000 women in the UK with a HER2+ve breast cancer diagnosis who are also being treated with chemotherapy. Sadly, the statistics show that shouldn’t be difficult. But those 4000 women need to be told about the trial, have the trial explained to them, and be in a hospital that is part of the trial, where research nurses are able to reassure and answer questions. They need to read information and sign consent forms. They need to be sure about the purpose of the research and happy to take the (very small) risks involved. They must understand the concepts of anonymisation and randomisation. They must trust the NHS and the oncologist who is recommending the trial to them.

I always appreciated the treatments and drugs available to me – even the really nasty ones that had me begging for mercy, and peace, and sleep – because I’d a million times rather have the chance of treatment than hear the words, “I’m sorry, but there’s nothing else I can do”. But after Monday, I appreciate them all the more: I gained an insight into how we get these treatments, and the people, like Emma and Anne-Laure, who work so hard to make trials happen.

The upshot of our meeting was that I am going to advise on, and contribute to, consent forms, leaflets, newsletters, etc, which I’m really happy to do. (Don’t worry, I won’t be advising on any science.) Also, I may now be addicted to vanilla macaroons.

(I feel I ought to say that Emma and Anne-Laure do not mostly swan about taking tea with bloggers in exclusive cafes. They were in London for a meeting just round the corner.)

I’ll be publishing my interview with the Persephone team next week. In the meantime, there is more information here.