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How my patient experience has enabled me to empathise with those in my care

My own diagnosis made me re-evaluate what I thought I knew about survivorship

My own diagnosis made me re-evaluate what I thought I knew about survivorship

I’ve been an oncology nurse for more than 30 years. Most people would regard me as sensible, rational, calm and not prone to panic. And good at dealing with illness – that is, until I became ill myself.


Prostate cancer nurse consultant Nicola James Picture: Neil O'Connor

Having worked on several survivorship initiatives as well as one of the biggest professionally-led patient support groups in the country, of course I knew that survivorship is about more than a favourable scan result, blood test or clear surgical margins. Or at least I thought I knew. My recent experiences have frightened me, humbled me, changed me and made me realise that I worked for the first 34 years of my career knowing nothing at all.

    I am convinced that my feelings about my pulmonary embolism (PE) diagnosis can be extrapolated to those who have faced a cancer diagnosis.

    Bright future

    In July 2017, I had severe chest pain. I was 54 and fit (ish), a bit overweight and no longer able to run quickly across a road, but still fairly fit. I was working full time. I was busy but I was enjoying a happy life and I was looking forward to retirement at 55, thanks to a pension-obsessed husband, with a financially secure and bright future complete with a caravan and a celebratory cruise.

    My first thought was that I was having a heart attack – but it wasn’t, it was a PE from a deep vein thrombosis that I hadn’t known I had, related to a clotting disorder that I also hadn’t known about (although it seems a GP receptionist had, a year previously, held the clue in her hands but said the blood test was normal (but that is another story and another column). 

    It was frightening, but not terrifying. Everything happened so quickly that I did not really have time to be terrified. The terror has grown since then and although the acute danger has passed, and my back is sore from all those people clapping me on it and telling me how lucky I was, that terror has taken on a life of its own. The fear is not always there but my easy-going, default position of happiness has been replaced by the background noise of insidious anxiety – with occasional spikes of terror.

    Mental isolation

    As a member of a busy family with a husband and three overgrown children, I used to relish an evening on my own. I now hate being alone as I keep worrying that it will happen again. Without people around me, I am more likely to notice every real or imagined pain in my calf, chest, head, or in fact anywhere. I keep the odd symptom to myself for fear of being thought a hypochondriac. This of course makes for further mental isolation; making me even less recognisable as the happy person I was pre-diagnosis. My sense of security and faith in the future are seriously compromised and the biggest pension pot in the world will not bring that back.

    As a prostate cancer nurse consultant, my currency is prostate-specific antigen blood tests, bone scans, MRIs and Gleason scores. On the point of retirement, I have realised too late that while those things matter, it is probably the psychological effects that have the most profound, day-to-day impact on a patient.

    I will never have 'just another headache'. There will always be the little niggle that it might be something else. As nursing students, we all practised using nasogastric tubes on each other so we would know what the patient feels (I’m not sure whether that practice has been outlawed). I would not wish serious illness on anyone, but I write with certainty when I say that it is only in the past few months of a 35-year career, that I truly understand and empathise with those in my care.


    Nicola James is a nurse consultant at Morriston Hospital in Swansea, Wales

     

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