Abstract
I first met Ron almost 6 years ago, when he got in contact after we advertised for people to share their stories of cancer with undergraduate nursing students. We were hoping to hear the stories of those (or ‘from people’) whose lives had been changed by cancer, as part of our plans to reframe cancer as a long-term condition following evidence that over 50% of people with cancer will live 10 years post-diagnosis and treatment (Cancer Research UK, 2016). Ron always says it was total luck that he saw our advertisement and that he surprised himself by volunteering to help, as generally he would have run a mile from anything so personal!
Ron has worked with us since then on a number of projects.
He remains actively involved in teaching undergraduate students, having told his story now to more than 600 students (Edwards et al., 2017). He has also been active in helping us design, develop, deliver and evaluate a Master’s module in cancer care for nurses and allied healthcare professionals. This module is jointly led by a group of people affected by cancer, and academic staff. It has run twice and was evaluated very positively, and fits with the idea of partnership working between patients and professionals (Job et al., 2017). Supported by the Welsh government Ron has told his story to senior healthcare clinicians in an All Wales Masterclass, and subsequently worked with a number of clinicians to ensure their information materials are person-centred and easy to understand. He currently works with us on a number of research projects as a lay expert advisor. He is particularly proud of his work on two projects. The first involves people with pre-existing physical disability and their experience of cancer care (screening, treatment and long-term support). The second project is trying to explore the impact of social inequalities, deprivation and neighbourhood support on cancer experience and outcomes.
Ron’s story was written with my help and evolved following a conversation in which he was asked to talk about his experiences since becoming a person whose life had been turned upside down by cancer, but also how it has led him into new experiences and provided opportunities he had never dreamt of. The following is a summary of his story and punctuated with his own words: I’m from the North, not a very bright bloke as they say not the full shilling and a bit of an outsider. During my school years I didn’t have the confidence to stand in front of the class and talk to them, didn’t think I had anything of interest to say. Even just a few years ago I was still very nervous about giving a speech. I decided to agree to talk to nursing students as I thought it was important that they had an insight as to what cancer and its treatments: surgery and chemotherapy were about from an ex-patient point of view as I know how vulnerable I was after the word cancer was used and before I was treated. I was not optimistic about being alive as they told me I only had a 10% chance of surviving for five years … that was twelve years ago! So the fact that I had Bladder Cancer has inadvertently opened up paths that would have been unthinkable before my diagnosis. My voice is becoming more powerful the longer I live. The opportunity to tell my story to students in training, to researchers who might be able to inform the care and treatment people with cancer receive and to politicians who shape strategy has made me feel my life is of use – enabling them to understand important and sensitive things about life after cancer. There is nothing I don’t talk about now … for example ‘Being a bag wearer’. What it is like living with a urostomy that leaks, bursts and can smell–the stoma gets in the way of spontaneous decisions such as staying the night at a friend’s house needs advance planning as you need special equipment and a night bag/drainage system. You don’t look disabled but need the space to manage the bag but get filthy looks when you leave the toilet. ‘A hug is not the same as a f***’ As a fifty-year-old gay man, following the surgery I became impotent so any opportunity for an active sex life was gone. Having a voice powerful enough to challenge unthinking health professionals who suggest the pleasure you get from sexual intercourse can be replaced by the pleasure from a hug. ‘A good hug always leaves you wanting more … .’ I am not ungrateful for all the skilful treatment and care I have received but it feels important for all health professionals, especially nurses as they are on the frontline of care everywhere, to be aware of and understand the long-term impact of cancer and its treatments Everyone is individual but we have all been changed by the word cancer, our lives are different – adaptations need to be made and the years afterwards are characterised by both deep despair, (in my case suicidal thoughts and planning), great joy and new opportunities, in my case for travel and new experiences such as learning to sing – my voice is being used as part of a cancer choir! It was and continues a pleasure to have talked to the students, now including qualified senior nurses and allied healthcare professionals. On reflection I realise that I have gained so much by it. It’s given me more confidence in myself and a reason to carry on living. It has given me a real purpose to my life – before being involved I was lonely and quite reclusive, now I am totally engaged in the world and doing voluntary work with people with dementia. ‘I believe my voice being heard has given me back my life and that it is a useful life.’