This week, our blog features a guest post from Dr David Matheson, from the University of Wolverhampton, and Dr Catherine Matheson-Monnet, from the University of Southampton. They are exploring what being well and wellbeing mean to people who are affected by prostate cancer.
We have prostate cancer, both of us. One has it in his body and his life; the other 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 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.
Having tried various ways to enhance being well and 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. However, working with PCR has been key in enhancing being well and wellbeing as it has made our lives more purposeful.
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.
A longer term 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 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
If you are a researcher and would like to share news about your prostate cancer study, please email a short outline of your work and proof of ethics approval to [email protected].
