Living with a diagnosis of incurable cancer is hard. We all know that someday we will die but being diagnosed with an incurable cancer means that you lose the opportunity to live life in the illusion that it won’t happen to you.
Telling people about your diagnosis is hard. They want to make everything better for you. Your diagnosis makes them fearful, and most people don’t know how to respond. It is not uncommon to be met with “Well, we are all going to die someday!” or “I could step outside and be run over by a bus, you just never know”. But having cancer doesn’t stop you from being run over by a bus.
My life changed in a fundamental way when I was given the diagnosis of cancer. It is difficult to explain to people what changes without using words like “existential”. My faith in my future was immediately compromised. It kind of feels like you know you are walking on quicksand on a beach – one step or move in the wrong direction and you will sink. Everyone else is walking on the same beach with no knowledge of the potential danger or threat that surrounds them.
I have been thinking of different metaphors or analogies to help people understand. Then, early one morning, I thought about being on a train ride. Cancer is the ticket.
When I was diagnosed with breast cancer in 2003, I was given a ticket for the Cancer Express. I wasn’t asked if I wanted to take the trip but once you have been given the ticket you board the train – no excuses, no rain checks. Then, in 2017 when I was diagnosed with metastatic or stage 4 or advanced breast cancer, my ticket was double-stamped, and my continued presence on the train ride was required.
Stepping on the train at the station for the first time was frightening. It’s like being in a foreign country where you can’t fully understand the language and you’re not sure exactly where you’re going. You’ve got onboard regardless, and you feel strangely certain but also uncertain about the destination. Details are only alluded to, not discussed fully at that stage in terms of the route, the length of the journey, proposed stops or the requirements at each station.
I didn’t feel too alien in the landscape because I am a doctor and understood the language – “TRAM reconstruction”, “node negative good prognostic feature”. For many travellers on the train the medical terms are another language.
Since 2017, I have been living on that train. It has been comfortable at times and a crazy careening caboose at others. The landscape I have travelled through has been amazing, beautiful and exciting. I have had wickedly fun times. Sometimes the carriage seemed to have become completely transparent, so I forget I was even on the train at all. Sometimes the train enters long dark tunnels with no idea when it will come out or even if it will.
I have my own little carriage on the train. It is comfortable. The bed is soft, the pillows perfect. Mostly I can sleep but sometimes not. Room service is available 24 hours but sometimes it is hard getting them on the phone and the choice can be limited.
You board the train with as much luggage as you choose to bring but it can only be stored in your carriage. Clothes, books, music, and food but also fear and sadness and uncertainty. You can stop off and pick up things you feel you are missing. Sometimes visitors just drop their baggage off in your carriage without asking. As time goes on the baggage can become heavier or lighter depending on how much space you have and how easily you can offload excess baggage. The only excess baggage fee that applies is how well you can manage to keep everything together.
I meet some of the other passengers on the train. We share diagnoses. We share stories. With some of them I share my fears, my worries about this journey we are all on and I find out how they feel. We try and help one another make sense of the landscape and gingerly discuss the possible destination.
Some of my fellow passengers can step off the train after five years, very happily having reached a stage of cure. Even once they have stepped off, their life is forever changed because of the landscape they have travelled through. I watch those people stepping off with all their baggage and know that it will continue to be a burden.
Others, like me, know that while we might be able to step off for a short while, we can’t lose sight of the train because we will need to get on it again. Being diagnosed with breast cancer usually means that it can come back at any time even after five or 10 years or more. But we take any wins we can get.
The Special Status
A diagnosis of incurable breast cancer meant I was awarded special status on the train, a limited-season ticket all the way to the destination, duration uncertain. When people like me disappear from the train, it is because we have reached our destination.
People can come and visit you on the train – whānau, friends and colleagues. They can sit with you for a few hours but at the end of the day all visitors must disembark. No overnight stays. The overnight train accommodation is for bona fide ticket holders only. And to be honest, visitors do not want to join you for the full package. They are happy to get off the train at the same place they got on, irrespective of how far you have travelled together. It is lonely on the train when they leave.
There is no timetable. The train travels at its own speed, on its own route.
The End Stop
We are all headed to the same destination, but it is not clearly stated on the ticket. What awaits you will depend on your belief system. Having the ticket with your name on it and sitting on the train forces you to move from living life in the uncertain certainty of your own death to the certain certainty of it. You lose the illusion of immortality. You can at times feel hopeless, but you do not lose hope.