I first started to notice something was wrong around summer time in 2011. While taking a shower I suddenly felt a sharp/stabbing pain in my right testicle. That’s when I noticed a lump. Being from a healthcare background you always think the worst because that’s what you see day to day. As a radiographer, I sometimes spent up to ten hours a day looking at chest x-rays of cancers and how these can spread. Despite my work bias and the fact that I was only 23, something told me right from the off that this was definitely cancer. It turned out I was right.
Despite the fact that I immediately went to see my GP and get an ultrasound scan, by this time I arrived for imaging I was in horrible pain. It felt like being kicked in the nuts over and over again. All day long. I was terrified that I hadn’t caught the cancer in time. The ultrasonographer did the scan and I could tell straight away from her reaction that my fears had been confirmed.
As a young man, lots of thoughts went around my head. Will I survive this? I knew the hospital team that was helping me, but anything could happen. Will I ever be able to have children? I was going to have to undergo surgery to have one of my testicals removed. How would I tell my family? The worst thing was having to tell my family and how it would impact them. I knew they’d be scared of potentially losing their only son and their worry played on my mind every day, to the point that I was more worried about the effects on them than on me.
The ultrasonographers immediately sorted out an appointment with the urology surgeon who then referred me for surgery and in a matter of weeks I was a patient laying on the operating table waiting for surgery. It felt so different being on the other side of the healthcare system. I was no longer the confident radiographer expertly imaging the patients and in complete control. I was a vulnerable man placing my life completely in someone else’s hands. I had to have total faith and trust in the individuals looking after me.
I was lucky in the sense that I had worked with these people before—even in surgery. I knew them well enough to talk openly and honestly about how I was feeling and whether I understood what was happening. I was fortunate to know a little about what to expect before I set foot in the hospital. But most patients don’t. And even for me it was still very daunting to be in that situation and not be 100% sure of what was going to come next.
After my operation I met one of the specialist consultants at St James’ Hospital in Leeds. It was at that point that they finally confirmed I had cancer. Although it was obvious to me, it was still a shock to hear it spoken. The good part about testicular cancer—I know that sounds odd, but it’s true—are in the statistics. It’s relatively rare cancer, accounting for around 1% of all cancers in men, with around 8,000 to 10,000 new cases in the US and around 2,300 cases in the UK every year. More importantly, the survival rate of five years or more is about 98% which for a cancer is very high. And an orchidectomy (or testicle removal) does not usually affect fertility and although I was advised to wait a year after chemotherapy before trying for a family.
Although I don’t want to be defined by my previous experiences I believe they have had a profound impact on me as a person in particular how I approach health care. That feeling of being a patient, that vulnerability, that anxiety, that fear of the unknown, will stick with me forever. Sometimes as health professionals seeing hundreds of patients a week, we often forget that for them this may well be their first experience of a hospital. We need to be open, honest and give them the confidence in us and the freedom to voice concerns or seek any clarification on what is about to happen.
But I also learned a lot about being a model patient. I saw from the other side of the exam room what it’s like to look at a healthcare professional who might be at the end of a 13-hour shift. Inherently, I knew that radiographers are people too. But sitting in that gown I had a chance to think about how you might approach someone who has been staring at backlit screens all day reporting on up to 200 X-rays that day.
Yes, I am an expert at producing diagnostic reports on x-rays, as well as doing lots of teaching, research and helping to develop our service and drive it forwards. But I often think that, for some, health care professionals and doctors are seen as these machines that know everything. That’s not true. Sometimes medical professionals are put on a pedestal to the extent that there is a two tier relationship. This cannot happen and it is crucial to try and break down those barriers.
Even though I was in a place of vulnerability, it reminded me that our healthcare providers go through difficult times as well. And to speak to that. And to speak to them like they’re regular people.
I also realized how important it was to ask as many questions as you want or need to. As a patient I often felt a bit daft asking questions that I thought most people would probably know, but the thing is that most people probably don’t know these things, they are just afraid to ask. I would always advise anyone going for a hospital exam to think of any prior questions, write them down so you don’t forget any of them and take the time to task the professional. It’s easy to get quiet when talking about life or death. When thinking about whether or not you will see past 5 years or be able to have children. I always made sure that I understood exactly what was to come and I don’t ever want to think one of my patients would be too nervous or confused to take a moment to clarify something with me.
I went on to have two courses of chemotherapy at the specialist teenage cancer centre in Hull where I received fantastic care and support from all the staff there. I am so grateful for the kindness of my colleagues at Hull who supported me emotionally and rallied round to drag me through this difficult period. I also know that early diagnosis was key to me being deemed cancer free after 5 years of surveillance. It’s so important to act quickly when you know something is wrong because it can improve your survival rate. And I’m thrilled to add that today I’m the father of twin boys.
My experience as a patient has certainly had a profound impact on my outlook as a healthcare professional. Out of something so negative has come a big positive that has helped shape my care of patients and I will continue to teach my radiography students about the importance of the patient voice and their total welfare throughout their visit to us.
Nicholas Barlow has worked as a radiographer in the UK for over 10 years. He currently works at Rotherham Hospital, one of the leading lights in radiographer reporting in England.