Cordelia Galgut, PhD, is a British registered counseling psychologist. She lives and works in private practice in London, England. She has written 3 books on the psychological impact of cancer, the first 2 about breast cancer and the third about living with the long-term effects of all cancers. She is passionate about highlighting the mismatch between what people think having cancer is like and what the actual reality is. You can follow her on Twitter.
“You need to get on with your life. You’re exaggerating.”
I was diagnosed with bilateral breast cancer in 2004. Since then, I’ve lost track of the number of times I have been silenced, criticized, or undermined when I have tried to speak out about the fact that I don’t seem to be “getting over” cancer in the way that people in my life expect me to, both emotionally and physically.
This lack of acceptance and understanding of the reality of my life after cancer has had a really negative effect on me psychologically. Often enough, people don’t mean to undermine. They just don’t know any better. Someone very well-meaning once told me she thought you were diagnosed, had treatment, and then it was all over and you were back to normal. Of course, this is a myth that many of us believe, including those of us who have had or currently have cancer. That is what we are told by people in health care and in society at large. When I told her that my life after cancer wasn’t quite like that, she said she was grateful to be told this and found this knowledge empowering.
Contrary to my training in psychology, I learned through cancer that it is nearly impossible to “get over” a huge trauma. The best you can do is live with and alongside it as well as you can and not give yourself a hard time for not “getting over” it. This is true of cancer, bereavement, or any other big loss.
Long-term effects of cancer
One of the most impactful long-term effects of cancer is the real fear of a local recurrence or the spread of a still-present cancer, which is hugely misunderstood. People think this fear will lessen over time, but it can actually get worse for many of us. This is due to many reasons, including the fear of having to get more treatment or the fear of dying. I have seldom spoken to anyone with a cancer diagnosis who stops dreading a recurrence or worsened cancer.
Even so, people can be incredulous when I tell them I can easily still feel terrified of getting more cancer 16 years after diagnosis. “No way,” they say. “You’ve got the all clear.” “No,” I say. “Breast cancer can come back years later, or a stable, still present cancer can worsen. Look at Olivia Newton-John’s situation, all these years after her first diagnosis.” “Oh well, the chances of that are so small,” they say. And yet, any of you reading this who have either had cancer, still have cancer, or have had someone close to you have cancer will know well that it’s that any chance of recurrence or spread haunts us.
How to talk about the long-term effects of cancer to loved ones and others
I believe that validating your experience is the first and most important task for anyone who wants to speak out about cancer’s long-term effects but is struggling to do so. Tell yourself as many times as you need to that it is entirely normal to have enduring thoughts and feelings about cancer. This is a common part of our humanity. Also, long-term effects are real, and many people have them.
These validations can be done in a variety of ways. Even just a simple set of affirmations can help re-wire the brain a bit. For example, you could say:
“My long-term effects are real.”
“I am allowed to feel what I feel and experience what I experience.”
“I am allowed to speak out and contradict someone who is negating my suffering and tell them how life really is for me and expect them to listen.”
Any versions of the above that feel right for you could help. Speaking out loud rather than in your head can be helpful, too. Try it on your own at first. Find a safe, private space to sit or walk around in as you say them. You might start to feel angry and/or upset. This is entirely normal. Stop if you feel too overwhelmed, though.
Then, try to say these words to a loved one. If you cannot find the words yourself to speak to a loved one about your experience, read a poem I wrote about 10 years ago to start a conversation with them about how you feel. You can adjust the wording of the poem to fit your specific cancer diagnosis. Simply give the poem to your partner, a family member, or a friend to read, or you can read it out loud to them:
“Please don’t tell me how I should feel
Or what I should think about having breast cancer;
How I should be ‘over it’ by now;
How I should be more positive;
How I should be grateful that I’m alive.
And please don’t say, ‘You’re overreacting to your situation,’
‘It’s only you who feels like this,’ or
‘It’s time you got on with your life.’
How can you know? You have never been in my situation.
And please don’t ask me what I have contributed to my cancer
Or tell me how brave I’ve been.
There was no choice at all.
It was just the luck of the draw.
And please don’t ask me how my breast cancer journey has been.
There was no journey
There is no journey, because there is no end in sight.
And for pity’s sake, don’t say,
‘Well, we’re all going to die in the end,
I could get run over by a bus tomorrow.’
You have never stared death head on.
You have never had breast cancer.
We are on different sides of the track now.
Tell me instead
That you cannot know what it is like living through this hell.
Tell me instead that you have an open heart
And an open mind,
That you’ll listen,
That you’ll try and understand,
Even when what I’m saying sounds preposterous to you.
It is my reality.
And please, please try and look beyond your own fears,
Or if you can’t, tell me so.
Having breast cancer is terrifying
And the terror does not diminish,
Because the fear that it will come back is ever present.
So please, please don’t tell me that I’m one of the lucky ones,
That I’ll be back to normal soon,
Because my life and I have been changed forever.”