Our relationship extends beyond the research
By Jac Eiffel
As a person living with a high mortality cancer- 12.000 diagnosis and 9000 deaths a year and seeing all my young friends (mainly under 40) die within months of diagnosis, I joined “Cancer Voices” and asked why there was so little funding for research in this type of cancer. The answer was simple “everybody dies fast so there are no advocates, no awareness campaigns, no lobbying, therefore no funding”. I decided, there and then, that I would lobby for innovations in the diagnostic, treatment and survivorship of ALL cancer patients. I would become a “consumer”( silly word) in basic research. So, after a selection process, I was paired up with researchers.
In most instances the researcher contacts me at the last minute, the communication is awkward and I can sense the resistance, the frustration. In most instances, I can hear the undertone “what a waste of time, all I need is your name and a signature because it is a requirement”.
To remain polite, I have to remind myself that, like them, I have been at the bench (super great) had to teach (great) supervise (great) deal with lab’s politics, publications, networking, managing a career (all BOOH!) and that it is easy to forget that the end game of research is to benefit patients.
Well, that was the context. However, my interaction with Dr Karen Alt is different. We were paired together just as Covid19 struck so we communicated through zoom and texts. I was a bit under the weather initially because of brain fog chemo/radiations and had difficulty “tracking“ on Microsoft words but Karen was accepting. Every time we interact it is a real dialogue, it is relaxed and it flows without stiffness. It is great fun too because we interact in a language which is not our first language and yes we laugh!! Imagine a researcher texting her/his/ they “consumer” during lock down to ensure that the person is OK, and offering help if needed. Not only once, several times. Well! I can tell you TRUST is all there for me, the relationship is established, I am ready to go to Timbuctu on my knees if she would ever need a consumer to present at a conference with her (please don’t Karen, I hate the heat and have arthritis). In the meantime, I will be ready to support “ My researcher” in her research efforts in every way she wishes. She can be at the bench in the lab and I can be in a bed in hospital, we are connected and we are better because, for different end game reasons (her research/vs my life), we are together.