The patient-radiographer relationship

When I was diagnosed with an aggressive and advanced type of endometrial cancer at the age of 37, I was told I was too young for this to be happening to me. I found myself thrust into a frightening new world, one even medics seemed confused by because I didn’t fit the clinical mould.

I had a lot to learn and a lot to experience – I absolutely am the central point of my cancer experience and yet I depend on so many others to keep me well and make sense of my future; the relationship I have with radiographers is central to it all. 

I have no clinical background, no particular understanding of science or the concepts that drive radiography, yet I rely entirely on this vital service I receive as a cancer patient. It mainly sits in the background of my day-to-day life now, but I can honestly say I live from scan to scan and find peace in the process. I am reset each time it comes around. I get the results and I breathe deeply again… until the next time.

In 2016, the year before my diagnosis, I was offered an ultrasound which did show a problem – it was reported on and my general practitioner (GP) gave me some good advice. However, I was not offered testing for my symptoms when I met the consultant. I was dismissed as hormonal and told to lose weight.

Following a hospital admission after a procedure to reduce my symptomatic bleeding when things did not go to plan, I was given a magnetic resonance imaging (MRI) scan to check that my bowel hadn’t been accidentally damaged but the scan was not really taken into account. I learned months later that the concern was there in the images, it had just been missed. They were looking for a problem with my bowel and missed the problem with my cervix. It was another few months before another hospital admission led to an ultrasound and two very concerned radiologists advised me that I needed to be seen urgently. 

At the ultrasound appointment I had that day, my respect for imaging staff began to grow. The scan was conducted initially by one radiologist, who then called in another. I was kept in the dark – and you could argue they acted professionally – but I could read the room and I could tell there was a problem. 

As that appointment progressed, I became increasingly concerned as I could sense all was not well. I was given an explanation that there seemed to be an infection, but the words and the facial expressions did not quite match up. I am polite, I defer to the expert, I did not speak up. Their insistence that I stay and be seen by a doctor – “You will go and be seen as we’ve advised? You won’t go home until you’ve been seen? You will go and wait for a doctor?” – had a sense of urgency that was a little alarming. 

Looking back, however, I can see that it was the first time I felt that I had been taken seriously. I had been trying to get answers for my symptoms for close to a year and, in that scanning room, I vividly remember seeing them focus and confer with each other. I loved that the first radiologist told me that he wanted to double check something with his supervisor – there was no arrogance on display and there was something about a genuine concern that I could feel. I have had a lot of medical intervention since but I vividly remember this appointment – I felt cared for as they hunted for the details and reassurance at the marriage of technical ability and human wisdom. 

Cancer was confirmed and treatment put in place, scans detailed the extent of spread (yes, it had already done that) and I spent nine months in a whirlwind of surgery, radiotherapy, chemoradiation, brachytherapy and chemotherapy. At each stage I was introduced to more staff, more procedures and more unpleasant side effects and, at times, I felt like a slab of meat being processed through a factory. At various points I craved a human touch and not the process-led approach I had come to expect. 

The first time I really remember being treated as an individual came following chemoradiation (the most horrific day of all my treatment) when I looked dreadful, felt worse than dreadful and I just could not cope. The therapeutic radiographer was trying to get through the delayed list of patients – I could see the room was packed but I also knew that there was a window for me to be treated effectively and it was closing. 

The mind games when you have cancer are overwhelming and it becomes an emotional battle as well as a physical one as each perceived missed step could be the one that leads to death. Such fear cannot be underestimated and, with my three young children still in primary school, I was determined death was not for me – not yet. 

I asked at reception what was happening and made a little fuss (a polite one because I still defer to the expert!) and the radiographer did come out to see me – as soon as she did, I watched her compassion kick in. I was then seen, had my vitals checked and, following my radiation, was sent back to the chemotherapy ward for follow up as I was clearly not well. I had the radiation I needed, so process was followed, but I also had a moment of feeling truly noticed and a small adjustment was made to accommodate my needs. 

It was also on a radiotherapy treatment table that I had another moment of feeling seen. Losing weight and having to be remeasured, struggling to get off the table and taking longer than normal to be ready to walk away, a therapeutic radiographer just put her hand on my shoulder and stood in front of me for a couple of minutes in silence – it felt like solidarity.

We didn’t need to discuss what was wrong, it was obvious – I had cancer, I was struggling with the treatment, I was overwhelmed. Feeling acknowledged was very powerful and all I needed in that moment was kindness – she gave me that and I have not forgotten it. 

However, at the mid-point of treatment during a computed tomography (CT) scan, things were not straightforward. The contrast dye escaped from my vein and I had the most awful and painful experience of my arm swelling up in a way I had never seen before. I did not know what had happened (there was no explanation of side effects in advance) and spent what felt like hours lying on the CT bed with the radiographer rubbing my arm to dislodge the extravasation. 

She looked mortified and I was certainly horrified. Even now, as all staff leave the room for treatment or scans to begin, there is a moment when I wonder if I will cope. The emotion can kick in and the loneliness that comes with an illness like this reminds me of my vulnerability – the staff are safely tucked away behind the barrier while I face the risks and claustrophobia of the scanners alone. Having that radiographer appear with lightning speed to help me out is what lingers now – I was well attended to when I really needed it. 

I have since developed an allergy to the contrast dye and can no longer tolerate it. I feel I need to point this out each time I scan; I feel I need to remind the radiographers to be extra vigilant for any return of cancer. Despite the awful experience of the contrast – both in the room with that initial explosion and many months later in an ambulance having a severe reaction – I feel bereft without it. Without this contrast, which I assume is a vital tool of the radiographer’s trade, I feel vulnerable to mistakes. 

I know this is silly, I know it is unnecessary for me to speak up but, because it is a different person each time in the scanning room, that creates a nervousness for me that something will be missed. With no control over any of the cancer I have experienced, this small imparting of knowledge makes me feel a little bit powerful, a little bit in control of my situation and a little bit reassured that I have done what I can to ensure full care and attention in that moment. 

When I got to the end of the first line of treatment and had a scan to check all was well, it wasn’t. It seemed the cancer had actually grown despite all that I had been put through to eliminate it. My mid-point scan had shown some strange markings but they were assumed to be changes following surgery. I was oblivious to the notion I might be growing rather than eliminating cancer cells. The shock was immense. 

I needed a break from treatment and was told to enjoy the summer holidays (probably my last, it was suggested) with my children and return a few weeks later to join a trial. However, I had to interrupt my holiday as I was having strange headaches. I was told it was probably stress and so I wasn’t too concerned – after all, I had been through a lot. A scan was ordered.

On the day of the head MRI, I was in a really good mood. The radiographer who did my procedure was extremely friendly and I was explaining my desire for a trip to a beach somewhere exotic, that I wanted to fly and that I just needed to check my headaches were down to stress. I had convinced myself I was fine and the appointment started really well. 

I was able to get on the table by myself and I was trusted to do as I was instructed. The appointment, however, felt really long and when I eventually emerged from the machine, the mood had changed. The previously jolly radiographer was now serious and downbeat, she looked severe and her body language dismissed any notion of small talk. She was protective and wanted to help me off the table, she guarded me in a way that told me without any words that I had cancer on my brain and I was approaching a big black hole. 

There was no more talk of that exotic beach. I then had to wait several difficult days to have it confirmed by a consultant. I lost my trial place and was plunged into a really dark place. I was grateful for the scan but, on this occasion, the experience and the results were brutal. 

As you might have guessed, I have defied my anticipated “expiry date” and I am now in full radiological remission. Immunotherapy continues to work wonders for me. However, my relationship with radiographers remains a little weird. I know as a patient that radiographers are not trained to give any feedback and that it is not part of the etiquette to ask. 

I do not want to make staff feel uncomfortable by having to tell me they do not know or dodging the question. I know they can read the machines they are so familiar with, and I know it must take a lot of restraint at times to finish an appointment and not let on what they think they might know from that glimpse as the machine is operating.

I decided after that head MRI that I would guard myself in future and so I am probably regarded now as a little unfriendly. I am probably considered slightly rude as I resist all small talk and try to stay in a head space that protects me. I now embrace the process-led approach. I have a good relationship with my oncologist and I will need to hear about any return of cancer directly from her. I also like celebrating with her when the results are good – hers is the relationship that has endured and is constant.

I need not suspect what I think the radiographers may have seen because I am second guessing a reaction and wondering if they are worried on my behalf. I need to be able to cope with those few days between the scan and the results appointment. That is a difficult period, filled with “scanxiety”, a term you will see all over cancer patient forums. Sadly, it has not become any easier yet as everything I had been led to believe was that this cancer would kill me – it still might. I guess you could say that is true for all of us – none of us truly knows what tomorrow will bring – but the trauma I have experienced with a life-threatening illness is still lurking. 

There is a contradiction here, though. I recognise that the need to know the scans are good is a huge psychological hurdle I want to clear and, each time one comes around, I become more desperate to know it is still clear. I want it, I do not always want to deal with it, but I see I need it. I depend on these scans for my peace of mind. I did not imagine after receiving the news that my cancer had spread extensively in 2018 that radiography and, therefore, radiographers would become so important to me.

Despite being in remission, I still live from scan to scan, waiting for my life to come crashing down again. Scans both reset me and fill me with dread: I am both desperate for one to enable me to start again as if brand new, and filled with terror at what it might bring. 

I respect the skill of all the staff involved and I need, and am thankful for, the kindness and humanity I have experienced many times over at various scans and therapeutic appointments. I have been amazed by what the technology can offer and always marvel at the noises and science on display when I am actually in a machine. 

However, please know that, if I happen to be your next patient, I am not being rude or aloof and I’m not trying to tell you how to do your job; I am simply trying to protect my peace and keep walking forward through a very difficult landscape created by a frightening and unrelenting disease. 

Clare Hollinshead is a patient.