Ever since I was a child I’ve had a morbid fascination. I wrote a will at the age of 12 and got my mum to sign it. I think I wanted to imagine what it would be like to die and how I’d like to be remembered, the music that would play at my funeral. Perhaps just the normal curiosity of a child?
Before becoming a nurse I studied fine art and photography. I took portraits to try to understand people, I illuminated images I’d taken on redundant X-ray boxes retrieved from hospitals, using the light as therapy for people with SAD (Seasonal Affective Disorder). I always wanted to combine beauty with therapy.
Palliative care was something I’d thought about from the beginning but it took me 10 years to start working in it. Nine months after I’d had my first child, Gaia, I applied for a job as a Clinical Nurse Specialist in Palliative Care. I had a decade’s experience in healthcare which had taken me from the craziness of Accident and Emergency in East London to working for Medicins Sans Frontieres in the depths of rural Bangladesh. I had experienced death and dying in many fields but I was sure that it was what I now wanted to focus on as a specialty.
Perhaps the only two things a person can be sure of is that we are born and that we will die. I found giving birth to be life-changing, and I underestimated the impact it would have on me as a nurse
Perhaps the only two things a person can be sure of is that we are born and that we will die. I found giving birth to be life-changing, and I underestimated the impact it would have on me as a nurse.
For me, to give birth was what it is to be really alive. To learn that you are dying is surely to become even more aware of what your life is and has been, as you approach its end. Through my own pregnancy and childbirth I saw how much support and attention was given to the beginning of life, and that made me even more determined to understand the process towards, and at the end of, life.
When I started the job nearly three years ago the first thing I realised was that I’d lost an emotional layer of skin. I was more vulnerable than I had been previously. Having Gaia had allowed me to experience love to a depth that I’d never reached before, an almost frightening one. To then support people experiencing the loss of their loved ones, or patients having to leave behind people they loved, was a challenge to say the least. For the first year of the job I had a permanent sore on the inside of my cheek from biting it, trying not to cry.
Perhaps the most difficult of all is looking after mothers having to leave young children behind. As a nurse specialist my job is to consult, advise, counsel and support. Symptom control of pain and nausea is a finely-tuned clinical skill where we use combinations of drugs to make life as comfortable as possible so that people may continue to live their remaining lives as ‘normally’ as they possibly can. It was not until I met a 22-year-old old mother who was dying of cancer, faced with leaving her two and a half-year-old behind, that I understood what ‘existential pain’ really was.
Sometimes the love and gratitude I have when I arrive home to see Gaia makes me squeeze her so tightly that all I want to do is inhale her. I think some people wonder why I choose to work in such a specialty, where suffering is common and sadness is rife
During the daytime, the patient would lie in bed cradling her toddler, watching TV, dozing on the morphine that controlled her progressing disease. But at night when her child was taken home, her pain and distress would escalate to levels that despite every drug or dose we tried, made little difference. It was only the arrival of her daughter in the mornings that would reduce her pain and agitation again.
Because of her family’s denial that the cancer was incurable and their devout faith that God would save her, my patient was not allowed to express the reality of what was happening. Without the opportunity to articulate her fears, the distress of leaving her child behind presented itself as increased physical pain that was unresponsive to any drug. This was ‘existential pain’ and the most effective treatment is to allow a patient to talk. I tried on a number of occasions but was not allowed by her family to proceed. For weeks, the days of being forced to avoid the palpable discomfort in that room, left me heavy with it as I arrived home to my own daughter of the same age.
Sometimes the love and gratitude I have when I arrive home to see Gaia makes me squeeze her so tightly that all I want to do is inhale her. I think some people wonder why I choose to work in such a specialty, where suffering is common and sadness is rife.
One of my patients, a beautiful and charismatic 30-year-old old woman dying of breast cancer said goodbye to her elderly parents on Skype because they were too unwell to make the flight from Brazil to be with their daughter. I watched in awe as she smiled and told them how much she loved them and thanked them for everything they had given her
It is the courage of some of my patients that keeps me inspired to continue. It’s the privilege (cliché I know) of witnessing this first-hand that reminds me of how incredible the human condition can be and how after three years, I am still only standing at the tip of an iceberg in understanding it. When confronted with one’s own mortality there is often no room or time for pretence, acting or for the worry of what others might think. There often emerges honesty and determination. I’ve realised, that this frankness that I feel so fortunate to work around leaves me with little time for the superficiality of what life can be too full of.
One of my patients, a beautiful and charismatic 30-year-old old woman dying of breast cancer said goodbye to her elderly parents on Skype because they were too unwell to make the flight from Brazil to be with their daughter. I watched in awe as she smiled and told them how much she loved them and thanked them for everything they had given her.
And then came my own test of strength. A few days later, now blinded by the cancer that had had spread to her brain, she lay in and out of consciousness, her siblings and friends gathered around her. As I held her hand and told her I was there she came to and said my name… and then she asked me clearly and directly, “Imo, am I dying now?”
We usually eat around 7.30pm, I am grateful for Gaia’s Italian genes that allow her to remain in good spirits, later than most British children would still be awake
The room was silent but for the sniffs of her loved ones, and all eyes fell upon me. I knew I had to respect the courage and honesty she had shown me only days before, and so I answered her, “yes, but you are not alone”. They were the last words she spoke. Soon after, she fell into a deep sleep that she never woke from.
That day was like most others, no time for lunch, the grabbing of sugary sustenance to keep going, and the mad rush to see all my patients by 5pm before dashing to get changed into my cycling gear to race home to collect Gaia from the childminder. Then it’s a frenzy of trying to cook supper quickly (which it rarely is) and we usually eat around 7.30pm, I am grateful for Gaia’s Italian genes that allow her to remain in good spirits, later than most British children would still be awake.
The other night she said quite calmly to my partner as we sat around the table eating, “Papa, I’m going to kill mummy”. After nearly inhaling my food, I asked her who would cook her supper, love her and snuggle her to sleep at night if I was dead. She quickly replied, “Papa will”.
And there, in some very basic and beautiful expression, was the essence of survival, from the innocent and instinctive mind of a child.
As I write this, three weeks away from giving birth to my second child, I am overwhelmingly aware of the cycle of life and death. Last week, as I finished work to start maternity leave I said goodbye to my patients who I shall not see again
Death is sad and often painful, but natural. People survive after losing loved ones and life goes on with the memories of those gone, remaining. I have learnt through my job that it is the fear of loss that makes it harder to let go.
As I write this, three weeks away from giving birth to my second child, I am overwhelmingly aware of the cycle of life and death. Last week, as I finished work to start maternity leave I said goodbye to my patients who I shall not see again. My bump, that I had initially been uncomfortably self-aware of for fear of its inappropriateness around the end of life, had become reassuring and positive to my patients. It brought with it a reason to smile and an opportunity to imagine new life beyond their own and a reminder of ‘the bigger picture’.
Last night as I lay in bed singing Gaia to sleep, she hugged me tightly and said, “mummy, I’m going to keep you forever and never let you go”. And there it was again, that raw and instinctive sentiment we all feel that makes us so fearful of loss. I wanted to tell her that I’ll never leave her but instead I realised I didn’t need to, but just told her that I loved her more than anything.