This brief account is the insider perspective of my journey as a nurse who was diagnosed with advanced cancer in mid-February 2020. This coincided with the beginning of the global pandemic of coronavirus. This unique account is presented as an interview. It reveals the challenges that being a nurse, being health literate in medical, diagnostics and treatments, compared to a layperson who may not be as health literate during their own treatment journey. This journey coincided with the coronavirus pandemic that brought unprecedented change to healthcare services in March 2020, further impacting my experience. The interview begins by summarising the start of my journey deep into advanced testicular cancer during Covid 19.
Interviewer: Can you tell me a little bit about how it all began?
Miguel: Yes. It started when I found a lump on my testicle which I knew was abnormal. I monitored it for several weeks before seeking advice from my GP. My GP swiftly referred to me for an ultrasound scan. Within days my GP confirmed a tumour, and I was then referred for further tests, scans and an appointment with urology. This diagnostic pathway was extremely fast, although my lived experience during these few weeks was that this window of time was very protracted. It was the window of unknowing, naïveté, denial, fear, and dread.
Interviewer: What happened next?
Miguel: Once all the results were in, I had a further appointment that confirmed my diagnosis as advanced testicular cancer with spread to the lymphatic system. As a student nurse, I had worked in a cancer care and haematology ward working with cancer patients having chemotherapy, providing me with insight into what lay ahead. This insight was both a help and a hindrance. It was helpful, insofar that I could guide my family around some of the care needs that I would have during my own treatment. However, it was a hindrance insofar that I knew how poorly I was likely to become. This added a layer of fear to my experience, I wondered whether a layperson in their naïveté (besides the guidance given by health care professionals) would be better placed?
Interviewer: tell me a little bit about your treatment.
Miguel: My treatment began the Monday that the country went into “lockdown”. The treatment consisted of four cycles each consisting of three-weekly rounds of Bleomycin, Etoposide and Cisplatin (otherwise known as BEP) chemotherapy totalling twelve weeks of treatment. I would go into hospital on a Monday at 8 am and leave Friday at 7 pm. I was in a bland unstimulating side room, alone attached to an IV pump for 12 hours each day. In between, I received numerous injections, either administered at home, or as a day case. Following the four cycles of chemotherapy, I underwent a retroperitoneal lymph node dissection, which is an extensive surgical procedure (e.g., laparotomy) to remove remaining cancer-affected tissue (due to disease spread) post-chemotherapy. It was an intensive journey of treatment for over 7 months with side effects that affected my daily life.
Interviewer: tell me how covid-19 impacted you, during your treatment?
Miguel: At the time I was having chemotherapy as an inpatient there were severe restrictions in the hospital due to Covid. Consequently, I was admitted alone, with no visitors to a bland and unstimulating side room. Understandably, staff only entered for essential nursing care, such as taking observations, changing the treatment infusions, or bringing in meals. The removal of my social support was extremely isolating and removed any distractions that family and friends provide. Although there were Facetime and phone calls, what I needed was face-to-face social interaction and support.
Each BEP cycle wore me slowly down. By the time I reached my last cycle, my tumour markers had reached zero but I had also ‘hit the wall’. I wanted to leave the hospital – I just wanted the treatment to end. I felt weak, tired, nauseated, had lost all my hair, lost 10kgs and was but a shadow of my former self. I was ‘done’, literally and about to self-discharge mid-cycle. However, that evening I had a pyrexia and became tachycardic. Fortunately, my consultant and specialist nurses were patient and caring and talked me into finishing my last BEP chemotherapy cycle, even though I recognised that during the following weeks, I would become even weaker as a result of the treatment.
For me, the worst part of my treatment journey came 10 weeks post-chemotherapy when I underwent a retroperitoneal lymph node dissection. Unfortunately for me, I was fully aware of what this surgery entailed having seen these in practice. At this point, I was scared to death. On the day of my surgery I had to leave my mother outside the hospital (due to Covid restrictions) thinking that I might die alone. Because I knew my discharge criteria, I was up and walking the next morning – my mission was to be discharged ASAP, so this nursing insight was helpful to motivate my post-operative recovery.
Interviewer: Tell me how being a nurse, with advanced cancer during covid, has changed you as a practitioner?
Miguel: I gained insight into the patient journey, which includes being vulnerable, scared and being at the mercy of a treatment regime you have little control with. I have greater empathy and compassion for patients now and understand the value of the small acts of care that carry a big impact during a treatment journey. For example, spending time talking to someone when giving them a drink, listening to their fears, explaining procedures carefully and giving people time to digest information and ask questions. It’s about the little things that we do as health care practitioners that are important. Being a nurse with advanced cancer during Covid was bitter-sweet; being health literate meant that there were few secrets, and this increased my fears. However, on the flip side, having ‘insider’ knowledge helped me navigate important questions and my eventual recovery. Fortunately, I am now cancer-free and undergoing post-treatment surveillance.
Footnote: I would like to acknowledge the amazing care and attention that I received during my journey from the doctors, nurses and health care staff that supported me, especially during my hardest moments.
Testicular cancer information from the NHS website
Cancer Research Help, fundraising and research
Chemotherapy for testicular cancer Guidance from MacMillan
Teenage Cancer Trust Support and guidance for young people aged 13-24 years old