Cancer journey is a popular term. If you have been affected by cancer, it may feel like everything in life is now about the cancer journey. Not necessarily so. Cancer remains only part of the journey of your life.
Whatever our circumstances in life, metaphors can give us clarity, meaning and stability. Like many people diagnosed with cancer, I used to look at my life as a cancer journey. But at some point the metaphor started to work against me. I had outgrown it. Might this also happen to you?
1. There was a time when the cancer journey metaphor helped me a lot.
The term ‘cancer journey’ provided a meaningful 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 etc 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’. For how long – I don’t know.
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, that remains. No doubt about it.
2. Cancer terminology raises passion and debate.
I used to talk and write a lot about ‘my cancer journey’. I still use the term in my writing, when I make general points. I have not yet found a suitable alternative.
Since my treatment for cancer I think a lot about my own identity: patient, fighter, survivor or thriver? Nothing feels intuitively ‘right for me’.
I do 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.
Now, some years after my cancer diagnosis and treatment in 2012/13, the language and metaphor which best sums up my position on my life with cancer is no longer the cancer journey. I do 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.
3. My cancer is not your cancer.
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;
- the type of cancer, grade, stage;
- the 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;
- the length and quality of life we may have left;
- how we choose to talk about it all;
- how we cope with it all;
- and the language we choose and feel comfortable with.
4. If you are affected by cancer, including family and friends, you know the experience will change you.
You don’t need to have cancer to be affected by cancer. Family and friends are affected, too. And sometimes it leaves you in a moral dilemma: I did not sign up for this. If you have been diagnosed with cancer, like I have, then you (and me, too) will say out loud – I didn’t sign up for this either. But there we are.
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 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-endulging, and pompous. Sometimes, a part of me, does not want to hear or talk about any of this at all.
5. 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.
For me, every day is a cancer day. Does that make me morbid? Certainly not. I am a realist.
There is no single day, that 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.
A cancer day often has undertones of cancer grief for the life we have had and the life we will never have. And that is why I need my day to be about more than just cancer.
6. 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 now it is left 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 that by then it might be too late.
After I had been worried about some changes in my body, a check up confirmed my resolve: I cannot wait for the future, I need to grab life now.
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 wellbeing in perspective.
7. How can you help yourself?
How can you 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.
The benefit? I feel more at peace and calmer in myself. I feel less stressed and more grounded.
If I am in re-mission, 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.
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’.
8. 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. Yes?
9. When “what if” happens.
Since writing this article I was diagnosed and treated for a local recurrence of my original breast cancer. And for good measure, my dog was diagnosed with mast cell cancer by one of her nipples, too.
I have asked myself many times, daily, “Am I back on the cancer journey”? Was re-mission and “no evidence of disease” (NED) an interlude?
No. This remains the journey of my life, with another cancer chapter.
I remain who I am, and so do you!
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