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Being well in the context of prostate cancer

User
Posted 16 Apr 2020 at 14:07

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.

User
Posted 21 Apr 2020 at 17:34
A big thank you to everyone who has so far responded to the survey and to those who have also volunteered to be interviewed. We still need more of the group to take part. It is critical to give voice for men and those close to them to say what it is to be well in the context of prostate cancer so that we can develop better tools for gauging quality of life, not only for men with this disease but for those close to them, the partners, relatives and friends who share the burden of the disease and who have insights that folk like me can only guess at.

Keep well and stay safe

david

 
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