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From Nurse to Patient: Julie Quigley’s story

written by

Leukaemia Care, Charity

  • Julie Quigley number 2

I have 20 years of nursing experience, qualifying in 1998. My first job was within the regional thoracic unit in Birmingham and I gained a huge amount of experience looking after patients undergoing thoracic surgery. Many of these required surgery due to malignant tumors of the lung or oesophagus, and I therefore met many patients with cancer stories.

I then decided to develop my skills within the broader field of cardiothoracic medicine. So, alongside studying at postgraduate level, I obtained my next job at Papworth Hospital within intensive care. I have been working at Papworth for 17 years and have developed both professionally and academically within this time. I am an advanced nurse practitioner with an MSc in advanced practice and have worked really hard to ensure that I have had a direct impact on the standards of care and safety that patients receive when undergoing cardiothoracic procedures, or receiving treatment for the vast number of diseases which fall within the cardiothoracic domain.

Before May 12th 2016, I managed a 15-strong team of advanced nurse practitioners whose responsibilities are to respond to deteriorating patients across the whole hospital according to patients’ MEWS (Modified Early Warning Score). My days went very quickly. One moment I would be reviewing a patient requiring regular monitoring and stabilisation, and the next I would be called to a sick patient requiring full intervention and potential transfer to other departments. I might then be preparing for a meeting, writing a report, undertaking an appraisal or attending a meeting; I had a very busy and demanding job, which required my full attention. I also regularly chaired meetings and was part of regional groups, involved in a nationally run education committee and benchmarking ANP level nursing against the regional and national agenda.

The above responsibilities meant that I ignored many of the subtle signs that I wasn’t completely well and put my tiredness or poor concentration down to ‘doing too much’. I struggled on for about three to four months when, in April 2016, I took myself along to the GP with what I thought (having completed my own physical examination!) was tonsillitis. It was the fourth GP that I saw that decided to expedite some blood tests and sent me home thinking that it may be glandular fever. Anyway, as many of you can relate, it turned out to be far more severe and, by the following evening, I had the absolutely devastating diagnosis of acute myeloid leukaemia (AML).

I struggle to explain what the impact of my nursing experience has been since being diagnosed. Even though I have spent every day of the last 20 years caring for patients with life threatening situations, I never once thought it would happen to me, and completely underestimated the impact of such a diagnosis on an individual and their family. I recognise the loss of control and powerlessness and realise that health professionals take their newly assumed position of responsibility for granted.

I went from a highly respected senior nurse to being put in a bed, given a devastating diagnosis, unsure of my treatment options and told that I needed to start chemotherapy right away. My chances of mortality were quoted as 30%, which compared with cardiothoracic surgery, seemed a very bad place to be. It did not matter that I had extensive knowledge on MEWS scores, aseptic technique, cannulation, venepuncture, the management of acute kidney injury or sepsis, as this now seemed very insignificant compared to what was now expected of me.

I asked a lot of questions and monitored what all of the nurses and doctors were doing very closely. This could be quite stressful, however, as everyone does things differently, guidelines are different between hospitals, dressing choices are different, and I started to feel that if I asked too many difficult questions or questioned somebody’s clinical knowledge, then I would become labeled as the ‘difficult patient’. I asked to self-administer my medication and I found this empowered me significantly. I could keep an eye on all my medication, was aware of its side effects or interactions and found that it kept my brain active, ensuring I got the right drugs at the right time. I also felt it helped me to develop a greater insight into my treatment.

Because of my nursing knowledge I think I have been able to preempt situations, tackle nausea earlier, report subtle side effects as soon as they happen and hopefully have enabled the medical team to treat things easier or more quickly. I was also able to realise when the nursing staff were busy or short staffed, and have empathy when things didn’t happen as suggested or drugs or treatments didn’t arrive when somebody said they would.

I will say though that having nursing knowledge and experience has also been a burden at times. My family have looked to me to describe treatments, have knowledge on my diagnosis and outcome, have relied on me to ask appropriate questions and remember finer details, which treatment has made increasingly difficult as time has gone on.

Unfortunately, after a stem cell transplant in September 2016, I relapsed in July 2017 and have had to have further induction chemotherapy in order to regain remission. I am continuing to receive treatment with great uncertainty about my future, but feel that I can draw huge positives and benefits from the last 18 months. I am about to start back at work part-time because of financial constraints, and feel that I will be much better placed to have empathy and understanding for every patient I am involved with. I have huge insight into being both an inpatient and outpatient, and can use my experiences to try and improve the services and care given to patients within my own field of nursing.