My wife, Catherine, and I have prostate cancer. I have it in my body and in my life; she has it in her life. Together, we have prostate cancer. It has been a feature since first diagnosis in 2012; it receded somewhat after the first treatment; it re-emerged fully during when it came back having spread away from the primary tumour site and it has been with us ever since. We have found a new normal and had to reassess and recalibrate this new normal with each turn of our prostate cancer story. This has also meant that we have had to reassess and recalibrate what it is for us as persons affected by prostate cancer to be well and fundamentally what wellbeing means to us in this context.
We are now setting out to find out what being well and wellbeing mean to others who are affected by prostate cancer. And by affected we mean either having the disease (or having had it) or being connected in some way to someone who has the disease (or has had it). We want to provide those affected by prostate cancer and those close to them a voice to say how things are from their perspective and what they would like to be asked about being well and well-being.
The survey is part of our larger study which aims to help healthcare professionals better understand the perspective of patients and partners/families/carer about being well and well-being and what questions patients and those close to them would like to be asked about their quality of life. You will find the survey at https://tinyurl.com/PCa-wellbeing
Prostate Cancer UK are not endorsing this or connected to the research in anyway. Individuals should contact me for any queries etc.