“A 5cm lump in the pancreas. Never mind, I will fight it”.
These were the words spoken by my father that made me rethink my relationship with him and all my medical training so far. Let me dissect this sentence to help you understand my feelings. “A 5cm lump on the pancreas”. Now I am not a surgeon, so my knowledge of pancreatic cancer stemmed from my medical school knowledge and occasional encounters of patient on surgical on calls and ED shifts. However, I immediately knew the outlook was abysmal, six months at most, no real treatment, vast morbidity and no hope of cure.
Feelings of frustration and exasperation were the norm when medical staff didn’t really grasp the nature of his disease.
“Never mind, I will fight it”. These words were going to haunt me for the next six months. I had no words at this point. My dad and relatives (all non-medical) understand that cancer=bad, however they had never experienced pancreatic cancer and how bad it really was. Everyone was optimistic but I knew the reality, and had to go through this grief alone. I didn’t want to be the one to break bad news. The doctors told my mum that he would just get sleepier and eventually fall asleep and never wake up. This did not correlate with my knowledge of pancreatic cancer. I was anxious about his future symptoms and wanted to talk about them to my mum to help her prepare and know what to look for. However having had such a rosy picture painted I was placed in an impossible position where I had to just watch and wait knowing what was coming but not being able to speak. I felt very isolated. I found it very difficult when treatments failed and he began to become symptomatic knowing the next steps in his disease but not being able to discuss it for fear of upsetting those around me further.
My family was thrown into a medical world, one which I was grateful for understanding; it was not an alien place for me. I knew that a lot of allied professionals could provide useful therapies but more often than than not administration times prevented him from benefiting and very few were able to adapt to his short life expectancy. Feelings of frustration and exasperation were the norm when medical staff didn’t really grasp the nature of his disease and need to act with a matter of urgency. I am used of chasing things up and getting things done, I found my new role of a family member very difficult to handle. I must admit I occasionally introduced myself using my professional name to help nudge things along. I now understand families reactions as they try to battle such a complex system, often without the benefit of a medical background.
I struggled with feeling of detachment and felt very alone. I found it difficult to grieve and to let go of my emotions subsequently.
My way of coping was to become a ‘doctor’. The doctor-patient relationship was an emotionally easier relationship than daughter-father, it became my default state when talking or thinking about his disease. I attended appointments with the calm, clear mind of a medical student sitting in on clinic and I was able to explain the DNAR form to my dad with very little emotion and was able to detach from the fact that my father was the subject of conversation. Although good for tackling the acute situation and getting through the day I struggled with feeling of detachment and felt very alone. I found it difficult to grieve and to let go of my emotions subsequently.
I struggled in my professional life; I became irritated by patients’ trivial problems and symptoms. My dad was much sicker than many that I treated and I struggled separating my clinical and personal life, often struggling to remain caring and empathetic.
I only remember the GP and the district nurse because they took the time to listen to my dad and got to know him as a person.
Looking forward and reflecting on my experience, I now believe I am a better doctor. I have a much greater insight into life on the other side. I will no longer sigh when asked to perform often trivial tasks, I truly appreciate the difficulties faced by families when medications are missed off the TTO (it is exceptionally difficult obtaining morphine over a Bank Holiday). I now understand the greater impacts illness has on the family and the stress and strain it places on everyone, even those on the periphery of the family circle. I appreciate the agonising waits, waiting for prescriptions, waiting for appointments, waiting for results, waiting for the district nurses, waiting for discharge (3 days for ambulance!). Always waiting! Waiting can turn even the nicest families into difficult ones.
Of all the doctors and therapists involved in the care of my dad, I only remember two, the GP and the district nurse, I only remember these because they took the time to listen to my dad and got to know him as a person, not just the 65 year old man with stage 4 metastatic pancreatic cancer. The time I went from doctor to daughter was not a time I would like to repeat, however I have gone through an invaluable experience, one that has shaped me as a person and as a doctor. I will endeavour to take my experiences forward with me to improve the difficult times for the patients I meet in the future.
Feature photo: Ben White