I never thought I would have so much in common with so many people around the world, and still feel very separate. While I too, used to talk about 'taking charge of my cancer journey', I have now chosen to 'take charge of my life'. Why and what is the difference?
One key message of the organisers of the World Cancer Days 2016 - 2018 is "Take control of my cancer journey", which talks about the need for help with the emotional reality of the illness (like anxiety, depression, loss and bereavement).
Now, nearly five years after my cancer diagnosis and treatment, I feel more strongly than ever, that the language which best sums up my position on my life with cancer is that I do not want to take control just of my cancer journey.
There was a time when the metaphor of cancer journey did help me.
It provided a frame for my experience, which was so dark and nebulous, that I almost lost track of everything including my sense of self. I was on a journey, literally ticking off the days of my treatment, never knowing how many days I may have left to tick off.
Since my diagnosis I have had plenty of time to experience and think about my own cancer journey, which is as individual to me as it is to others.
My cancer is not your cancer. So much can vary and so much is unique.
Like:
My life is not what it used to be. But on balance, I am better off than many others. I am told I am in remission (with no noticeable signs of cancer). For how long, I do not know. Whether I will die of cancer, or not, I do not know.
Life has always been uncertain. With a life changing illness like cancer it feels I have been moved up the queue. Whether that is a reality, I do not know. Other people have been diagnosed after me and have died before me.
The experience of any traumatic life-changing event can affect us in at least three ways.
1. We end up emotionally paralysed by fear and lack of hope.
2. We (eventually) feel motivated to take charge and become an active player in the life we have.
3. We hover on a spectrum between the two. That is where I find myself a lot.
None of this is about "getting it right or wrong". I always believe, we do the best we can, and that can change over time.
How can I help myself? How can I be one or several steps ahead of the game? Advice and recommendations are never ending. Navigating it all can be exhausting and frustrating. Over the years I have cobbled together my own strategy of things I do and things I avoid.
Overall what is helping me most, now, is the decision to take control of my life, which is more vast and meaningful than a narrowed down version of a cancer journey.
If I am in remission, then it is my mission to play an active role in the life I have - not as a survivor or thriver.
I needed to progress beyond those labels, which had an important and reassuring meaning for me at some stage of my cancer experience. But I have outgrown their usefulness.
Cancer has influenced me, but I do not want to be defined by it. Neither my body nor my mind is "just" about cancer.
Self-care has become non-negotiable. I guard my physical, mental and spiritual health with my life, literally, as they are the pillars of the life I have.
The worry for my future is and will remain part of my life. I am who I am.
Even with cancer, our life is not 'just' about cancer. Our life remains about 'us'.
Karin Sieger is a London-based psychotherapist and writer. Visit her online magazine about emotional wellbeing Between Self And Doubt.