The Researcher and the FROG
4 February 2019
Blog posted by Jean Simmons, Co-ordinator of FROG – Friends of Renal Oncology Group
Timo’s posting shows that his visit to FROG - the Renal Cancer support and information Group - was as valuable for him as it was for us. For us, hearing of the potential of immunotherapy approaches to cancer treatment gives hope – often in short supply if you’re dealing with a capricious cancer. Timo could have written an account of his research – we could have read it. But would we then be as ‘real’ to each other as we are after meeting and talking?
Ten years ago, conversations /meetings between patients and researchers were rare, incidental to treatment, and usually impersonal. In a decade, patient /partner participation (PPI/E) has moved from optional to desirable, and finally, with the GMC’s recent pronouncements, mandatory.
Researchers, once sceptical about PPI/E work on lay summaries and patient information sheets, understand that truly informed consent from trial subjects is assured only if both parties to the agreement understand each other. Once given, truly informed consent is mutually beneficial. For researchers, it reduces the likelihood of subjects dropping out, eliminating consequent loss of time, money, and progress. For patients, new treatment pathways open more quickly and for many, speedy delivery can affect both quality and /or quantity of life.
For researchers and patients to talk to each other effectively means learning each other’s languages. Patients, families, friends have always had to absorb new terminology, welcoming lay summaries, metaphors, similes - anything which enabled them to enter the worlds of researchers and clinicians.
My aim is to help researchers learn something of the language of the cancer patient.
Take the term ‘Cancer Journey’. Many people are comfortable with this metaphor – only some of them are patients. Another common metaphor is to see the cancer patient engaged in ‘battle’. News headlines often combine the two: ‘XYZ’s long cancer journey’ ended yesterday when s /he lost his /her battle with cancer.’
Be cautious in using both metaphors. For many of us, both put the onus for survival on the patient. What happened to cause the death? Poor map reading, a wrong turning taken on the journey? Just couldn’t keep walking forward? And what about losing the battle? Did they just not fight the cancer hard enough? As a Frog group member said when told to fight cancer, “Show me who, where and how to fight it, and I’ll do it”.
If you feel the implied criticism, you see the problem for patients for whom these metaphors are often unhelpful if not thoroughly depressing. But for others, the metaphors work.
Collaborative relationships with clinicians, radiographers, researchers, surgeons, specialist nurses mean that often patients feel that they travel with companions who read the road ahead, anticipate obstacles, circumvent them and when the road gets rough, offer support and comfort. Implicit in this relationship is that the final destination is not clear. Perhaps cure, perhaps not. Perhaps every day’s a victory. But for sure, neither clinician nor patient apportions blame when the end of the road is reached.
Others find the battle metaphor useful. They fight for knowledge of new treatments, search for trials and studies, bear discomfort and pain with courage, use their energy to renew purpose in other patients. They are frequently in a series of battles. One is fought and won, a period of respite ensues, and then the battle begins again. The battle is often with oneself, not with cancer: finding, in the bleakest times, the courage to move on.
For some of us, we’re simply ‘living with cancer’. Not a battle or a journey, but recognition that we are the same people we always were. We love family, friends, and the food, movies, music, travel we always loved. We laugh at the same jokes, and cancer - perhaps always with us - cannot change that.
However, we often move from one metaphor to another depending on how we feel.
On days when we feel oppressed, invaded, when we grieve for the life we had before cancer, no metaphor helps. But people who listen, acknowledge our feelings and refrain from exhortations to fight, be positive, or journey on, do help us find firmer ground on which to stand. (And there’s another metaphor.) Any great loss entitles us to grieve, whether loss of a person or loss of autonomy and the life we thought we had before cancer.
So tread warily when using metaphors. Researchers know how helpful they are in making the complex comprehensible. Use them to provide information to people desperate for information and you earn their gratitude. However, used as a basis for assuming how a cancer patient perceives the cancer which derailed (another metaphor) normal life can inhibit open conversation. Talking with, and listening to, cancer patients will reveal the way in which they perceive their cancer - on that day and at that time – and whether they have found an accommodation with it.
So be flexible in imposing metaphors on people who are like you, finding a way through a challenging situation.
And please remember that you, researchers, are the people who do battle on our behalf. We’re not so different. You find yourselves on a journey, knowing what you hope to find but encountering unanticipated obstacles, becoming disheartened, having to find the energy and optimism to continue.
We share common ground. A meeting of minds can be in part a meeting of metaphors and a basis for seriously interesting conversations with each other.