This week I have returned to ESMO (European Society of Medical Oncology). I had planned to attend in a very low-key manner. I would come and observe and report.
Sometimes though the best laid plans can take different directions not anticipated.
I have attended many conferences since my diagnosis and I would often sit and nod in agreement as the presenter flicked through their presentation slides. The graphs and information being discussed, it is complex, and I am not a doctor or a researcher. I have had no use for understanding such presentations previously as it was not something that impacted my daily life. However now I am a patient and I am trying to do what I can to ensure that I stay alive.
I have had to go mentally and physically outside my comfort zone in the pursuit of any kind of answers that can lead me back to where I was before I became a Stage 4 patient.
But the truth is we cannot go back, we will never be the same person we were, we have to adapt and evolve just as a tumor adapts within us. It is a race between us to see who will come out the other side. This thing shows no mercy, it does not listen to our pleas, we have to find a way to exterminate it, before it gets us.
There are as many theories about how this can be achieved as there are grains of sand on a beach. Some are down right nonsense, like extreme diets, bread soda and lemons, berries from south america etc etc.
But how do you recognise the truth when it is being presented to you. We can only follow the data that is being scientifically proven and presented to us but we know that this data can be biased or collected in a manner that didn’t that sufficiently capture all the possible outcomes.
So in a bid to better understand these presentations that I would nod in ignorant agreement at I took it upon myself to try to understand what was really being explained by all the statistics being presented and what did it mean for me as a patient?
Could it help me to survive longer by understanding?
I think the answer to that will be based on the treatment decisions I make as a direct result of understanding that complex information.
Why I set about learning these new skills was a determination number one to stay alive, but also to help distribute this information to other patients who are also desperate for information.
Darren Daly (head Statistician at the HRB Ireland), set up a workshop group called Statistics for Citizens, I happened to find it on twitter and thought, this is exactly what I am looking for. So naturally looking for anything that will give me an edge over the disease I signed up. Darren’s presenting style was engaging and funny but with the serious message of how important it is to know your not being mislead by the Data you’re relying on for answers.
I have learned a lot in the last two years, and while I trust my instincts a great deal I also rely on the data for decisions.
So yesterday my plans for a quiet visit to ESMO changed because I was asked to present a session on Understanding Statistics (the patients perspective on why it matters) I had to trust my instincts that I would be up to the challenge and that what I had learned would be of use to the other patient advocates listening.
I believe that the message was well received and that understanding Statistics will now be a new tool in the advocates box in the race against melanoma.
I want to especially thank Darren Daly for his help, but also Bettina Ryll (Melanoma Patient Network Europe) for her ongoing support and belief in us that we are capable of so much more that we would ever have imagined, we can learn new skills, and evolve, we can make a difference, after all this is all about us.
We are the patients, if we don’t fight for improvements to our situation we will continue to die, the time for Ostrich-izing or relying on others to come up with all the solutions is past.
Cancer however is not something we can fight that’s a terrible analogy, because none of us are losers……………but we can try to outsmart it