Life Beyond Treatment for Early Breast Cancer

15 Mar 2023

Image Supplied by Sydney By Kayak

Written by Luan Lawrenson-Woods

Life after a breast cancer diagnosis and treatment is a ‘new normal’ which, like life without a diagnosis, is always evolving, just not in a way you’d planned.

As the survivability rates for early breast cancer increase, more people are living life with the mental, physical and emotional side effects of diagnosis, treatment, surgeries and ongoing medication.

To survive a cancer diagnosis and treatment is a privilege that I don’t take for granted, however, I want to feel that I’m more than ‘surviving’. When I hear the term survivor, I think of Kate Winslet clinging to wreckage from the Titanic as she gasps to blow the rescue whistle after Leonard Di Caprio slips into the icy sea.

It’s 5 years since my diagnosis for breast cancer and I’m fortunate to have no evidence of disease. While I finished active treatment in 2018, I live with the long effects of treatment and surgery, some of which will be life-long. I also take medication daily (an aromatase inhibitor ) that brings with it chronic side effects. Then there’s the fear of recurrence.

A couple of years ago I talked to a friend about my recurrence fear and that whenever anyone asked me how I was doing, I’d smile and say: “I have no evidence of disease” then internally add a silent “yet”.

The lingering fear exhausted me mentally. My friend suggested I re-frame the ‘yet’ to ‘what if’ and think “what if I don’t have a recurrence?” That worked for a while, but there’s still the flipside of “what if I do?”. I also started to think the Big What If: “what if I hadn’t had cancer in the first place and I didn’t have to deal with brain fog, muscle ache, joint pain, fatigue, anxiety and depression …” They’re just some of the daily pain points in my life beyond treatment that I wasn’t prepared for.

We’re told that after cancer treatment we won’t sweat the small stuff but sometimes the seemingly small stuff is part of the long tail of the Big Stuff.

I feel like I’ve prematurely aged, which is no surprise as my oestrogen bungeed off a cliff when I had my ovaries removed to reduce my risk of cancer. I’m far clumsier now that I’m in surgical menopause: I bump into walls, stumble on a flat floor and I drop things all the time. I forget what I’m doing as I’m doing it and words evaporate mid-sentence, replaced by an alternative that usually has some association with the word I’ve forgotten.

I once called a restaurant and tried to book a food appointment when making a reservation. I guess it’s quite funny, really. A bit like Jennifer Lawrence in American Hustle calling the microwave a science-oven. And that’s how my psychotherapist suggests I look at it: with kind humour.

I’m easily overwhelmed by too much noise, too much to do and too many decisions to make. I sometimes need a nana-nap in the afternoon. And don’t get me started on digital technology, passwords and the never-ending upgrades to all the devices that are meant to help make life easier. All of which impacts my work confidence, and I worry about returning to work for an employer.

The challenges are physical too. Spontaneous sex is a thing of the past as a little bit more ‘prep’ is needed. I have joint pains from the moment I wake up when I hobble out of bed like someone 30 years older, and I need to steady myself when I stand up after sitting down for longer than 10 minutes. The other day I bent down to pick something off the floor and couldn’t get up again. I looked at my husband and laughingly confessed that I was stuck. I felt safe to say that to him, to be openly vulnerable and make a joke, but that’s not always the case.

I often cry with the frustration of not being who I was or who I had hoped to be. Sometimes my self-talk isn’t as kind as I deserve, and I worry about what others think of the ‘new me’.

Many people don’t understand that life after treatment for early breast cancer doesn’t mean that we’re no longer affected by it. Breast cancer is a major life event, as is menopause which is often induced by treatment. Talking openly about our experiences can help us accept and acknowledge what support we need, and advocate for it to help improve our quality of everyday life post-treatment.

And it’s important to say that I am, of course, acutely aware of those who heartbreakingly have been lost to this disease. And I’m conscious that for those living with incurable but treatable metastatic breast cancer, there is no ‘after’ treatment. Their stories need to be told too.

Recently I came across a post on Instagram from Rupi Kaur that made me look at things differently.

Instagram: @rupikaur I will never have this version of me again let me slow down and be with her - always evolving”

It got me thinking about the version of me I have today and how, even without a cancer diagnosis, I wouldn’t be the same person I was 5 years ago. And that to slowly ‘be’ with me now – a me that evolved through the trauma of treatment – is an act of self-love and appreciation.

I’m proud of how I got through the toughest physical and mental challenge of my life. Despite the aches and pains, I’m the fittest and healthiest I’ve been in years. I’ve created a career doing meaningful work with and for a community that I passionately care and advocate for. And I know me better than anyone. I know my body and I know my mind (even if I don’t know the words!).

So, I’m going to re-frame the ‘what if’ to ‘what is’. To what is now. Who I am now. Because this version of me now is all I have, and she deserves nurturing, kindness and love.

Yes, it’s unfair I had breast cancer. Yes, life’s harder after treatment. It is also simply ‘what is’. If I want to make changes and evolve post-treatment, I need to ‘be’ with what is happening to me now, so that I know how I can support her.

  • This is my ‘what is’ and, while many of us share experiences of a cancer diagnosis, the ‘what is’ of life after treatment will be very personal. Still, sharing and hearing how others can help! Check out Pink Hope’s closed support groups
  • Listen to Pink Hope’s podcast with psychotherapist and mindset coach Sammie Flook who talks about patterns and habits to support a more positive mindset that you can try yourself at home.

This content is brought to you in partnership with Eli Lilly Australia and developed independently by the team at Pink Hope.