I help terminally-ill parents to leave stories behind
Working with cancer patients makes me more determined to experience all that life has to offer, but sometimes the pain is more than I can bear.
We all have an idea of how life is going to be, but mine has changed radically in the past seven years. I work on a project for children whose parents have cancer, helping them understand the illness and supporting them when their parent dies. I also support parents to communicate with children and, when the prognosis is not looking positive, I help them write books and letters for the family they are leaving behind.
I spend months, sometimes years, getting to know a family and then one day while going about my daily life I will receive a text, often early in the morning saying “he slipped away at 4am” or “Rachel, he’s gone”. Over the past seven years I have experienced so many losses in my work. I try to remain emotionally separate, but I am human, a compassionate human, and it hurts every time. Often I check my work phone just before doing the school run. I drive my two young children to school and then cry as I go on to work. It is not the same gut-wrenching loss as that of a personal loved one, but silent tears in the knowledge that a family’s world has shattered.
As I arrive in work, all the normal things are happening. People in the kitchen are talking about diets, referrals for new families are coming in and I am trying to fathom how I can fit a funeral into my week if the family need me to attend. I often get told by families that I’m the one who remained real throughout everything, and I don’t want to let them down at the end.
When working in end-of-life care the level of intimacy with someone changes completely. Time becomes the most precious commodity and communication is honest. To be able to give someone the chance to convey their dreams is an honour, but it takes its toll.
Recently, a gentleman I worked with died. I had known his family for six years, I filmed his eulogy and hours of footage for his family. The magnitude of life and death suddenly hit me. I felt I had reached a limit of sadness and could not take any more. I needed time to think, to feel alive again and to be surrounded by life.
In this job there is no place for burnt-out heroes or martyrs. We all have a limit and I felt like an empty cup. I find that to cope I need to strip life back: I want to feel the world around me, the rain falling on my face and be in places of natural beauty. I need to be with people I love, who understand my job without needing to talk about it. Talking is exactly what I don’t want to do; I want to laugh and be outside. I love to swim in the sea all year round – it makes me feel acutely alive.
When recording books with people a common plea I hear is “I have no regrets, I just wish I had more time”. So I create time in my own life; I breathe, love, hug and do all those clichéd things so that I can go back into work and be useful again. I refill my cup. I think that when working in such a profession, at times we need to bend the boundaries to be human and to understand that is what people need. It is ok to be hurt and show hurt, to put your hands up and say I need a break, I need to go and breathe for a while.
To finish, I shall leave you with words by Fiona, who wrote this for her three children two weeks before she died.
“You are meant to be here. I believe that although I wanted to be here and share your life: the ups and the downs. God needs me elsewhere and you have to stay on Earth. Be a good friend and surround yourself with good friends. You don’t need to be the most popular one, the most strong or the most clever. But always be a good friend to those around you.”
Author: Rachel Smith, curated from The Guardian, I help terminally-ill parents leave stories behind for their children
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