Research on Well-being in the context of Prostate Cancer

We have prostate cancer, both of us. I have it in my body and my life; the other who is my wife and co-researcher, has it in her life.

It has been a feature since our first diagnosis in 2012; it receded somewhat after the first treatment, then it re-emerged fully 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 people affected by prostate cancer to be well and fundamentally what wellbeing means to us in this context.

Having tried various ways to enhance our wellbeing from diet and exercise to leisure and travel activities, we found that tiredness, fatigue and sleeping problems could often be overwhelming.

Having reflected on what it meant to be well and what wellbeing was, at times we are still not completely sure. 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.

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 in terms of being well and their well-being.

Our aim is to co-design with patients and those close to them a quality of life survey that asks questions that they would like to be asked.

To start on this work, we invite you to complete our anonymous survey. 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.

You will find the survey at: https://tinyurl.com/PCa-wellbeing