When I Outgrew the 'Cancer Journey' Metaphor

I, too, used to look at my life as a “cancer journey.” There is nothing wrong with that. But at some point the metaphor started to work against me. I had outgrown it.

Cancer terminology raises passion and debate.

I used to talk and write a lot about my “the cancer journey.” I still use the term in my writing when I make general points. But since my treatment for cancer I think a lot about my own identity: patient, survivor or thriver? Nothing feels intuitively “right for me.” I do not not want to be labeled or cut off. Yet others’ perception of cancer, and therefore of me, can do exactly that. If I let it.

I never thought I would have so much in common with so many people around the world — and still feel very separate.

Now, nearly five years after my cancer diagnosis and treatment, the language and metaphor which best sums up my position on my life with cancer is no longer the cancer journey. Neither do I not want to take control just of my cancer journey.

I needed to reconnect with the life I had before my cancer diagnosis and feel more connected to the world (and my world) beyond cancer.

There was a time when the cancer journey metaphor helped me a lot.

The term “cancer journey” 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 could look at stages of the journey, crossroads, milestones, resting places, one way streets, people who would join me on my journey or abandon me on the way, etc. The metaphor gave me some direction and a foundation.

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.

While I no longer “tick the days off” it feels I am “adding them on.” Like I have been given more time. And I try to feel grateful for what I have now without feeling too much cancer anger or remission guilt.

But the fear of what may lie ahead, or may be happening in my body right now — remains. No doubt about it.

But my cancer is not your cancer. You may have a different view and a different story.

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.

You and I, we are unique, with or without cancer. So much of our experience can vary, like:

• Whether you are the one with cancer, a relative or friend
• Type of cancer, grade and stage
• Kind of treatment available
• Treatment short or long-term side effects
• Other support we get or not
• Friends or family who may stay or leave
• Life changes we may have to make
• Financial, social and employment status we may lose
• Religious, spiritual or existential crisis we may have
• Remission and survival rates
• Length and quality of life we may have left
• How we choose to talk about it all
• How we cope with it all
• Language we choose and feel comfortable with

If you, family or friends are affected by cancer, the experience will change you.

My life is not what it used to be. While I am left with several side-effects of the cancer treatment 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. A friend of mine who suffered a stroke in his early 50s feels the same. Whether that is a reality, I do not know. Other people have been diagnosed after me and have died before me.

Sometimes I hear myself talk and think and read my words and I feel guilty and self-indulging and pompous.

Sometimes a part of me does not want to hear or talk about any of this at all.

The experience of any traumatic life-changing event has affected me in at least three ways:

1. I ended up emotionally frozen by fear and lack of hope.

2. I (eventually) felt motivated to take charge and become an active player in the life I have.

3. I 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 it can change over time.

For me every day is a cancer day.

There is no single day where I do not wonder about what may be around the corner, because of cancer, and what may never be around the corner, because of cancer.

There is grief for the life I have not had and the life we will never have. And that is why I need my days to be about more than just cancer.

My cancer experience influences the decisions I make for my life, now.

I try to be rational and not let fear get the better of me. With little support from the hospital, it is up to me to monitor my health. I have been told what symptoms to expect should the cancer come back. My thinking, rightly or wrongly, is by then it might be too late.

Neither my body nor my mind or spirit are just about cancer. So much else can happen and change, especially as I get older. I need to keep cancer, my abilities and my well-being in perspective.

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. And that changes from time to time.

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.”

The benefit? I feel more at peace and calmer in myself. I feel less stressed and more grounded.

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 — but as me, Karin.

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.

Even with cancer our life is not “just” about cancer. Our life remains about “us.”

What if?

Often I think about how I might feel if/when the cancer comes back. Will my world and my vocabulary change again and become smaller?

Will I need and want to settle back onto the cancer journey?

I do not know. I really do not know. And even if I did, that would be OK, too.

This post was originally published on KarinSieger.com.

Thinkstock photo by sSplajn