Which sentence do you think is harder to hear: “You have cancer” or “Your treatment is over”?
After being diagnosed with primary breast cancer, I was blindsided to find the second explanation so much more difficult to absorb.
The day I found out I had the disease, I was 40 with two small children and a busy job. It was obviously not ideal to have cancer, but I was confident that I would get through it.
And the cancer manager — notifying family and friends, telling work, arranging childcare for chemo, juggling appointments for scans, surgeons, and oncologists — dispelled all fears.
Once the treatment started, I realized the brutal reality. My hair was falling out in clumps, but the loss of my eyelashes and eyebrows was worse since I couldn’t recognize myself, my face swollen from the steroids.
Rosamund Dean underwent grueling treatment for grade three, stage three, triple-negative breast cancer, but life after treatment proved more challenging
I was thrown into early menopause, causing a litany of unsexy side effects, including osteoporosis, joint pain, mood swings, and brain fog. And then came the surgery to remove my right breast, leaving me with scars and grief.
I tried to focus on the positives: I was diagnosed in time for the treatment to be curative, so my hair would grow back, my breasts could be reconstructed, and although I couldn’t have HRT, I would find a way to adjust to medical menopause.
My diagnosis of grade three, stage three, triple-negative breast cancer was relatively high risk, so treatment lasted 18 months with radiotherapy and further post-surgery chemo. When it was finally over, I expected to feel euphoric.
But cancer treatment is not associated with a neat bow. No doctor ever says you’re “all safe,” like in the movies. They won’t even say you are “cancer free” because you can only know that if you had an MRI yesterday.
Even then, a tumor must be a certain size before it shows up on a scan, so the best you can hope for is “no evidence of disease.”
Once you’ve had breast cancer, there’s always a chance it could come back, with some cancers (such as triple negative) being at greater risk.
A surgeon told me there’s a 40 percent chance mine will come back, so I have to be “extremely vigilant” for any pain that could indicate it has spread to my bones, brain, liver, or lungs. If that happens it will be beyond cure and I will undergo chemo until my death.
And so, when my treatment ended, I left the hospital not with a jump in my stride, but with a gloomy sense of doom. I had panic attacks for the first time in my life, where I felt like I was suffocating because I couldn’t catch my breath.
Two years after the end of the treatment, Rosamund has discovered that she can finally look ahead again and make plans for the future
A visceral fear had me in tears several times a day. I tormented myself imagining how my husband Jonathan and our children, now six and eight, would manage if I died.
I found myself researching grief counselors and, hating the idea of them remembering me decimated by chemo, I perused the Dignitas website.
In addition to my new fear of dying, I had lost my identity. I looked at pictures from my 40th birthday and couldn’t recognize how fun, carefree and confident I used to be.
Now I had a closet full of clothes I no longer wore because I had been a patient for so long I didn’t know how to become myself again.
Steph Davies is the founder of Life After Cancer, an organization that facilitates support groups and coaching based on the astonishing statistic that 92 percent of people find life after cancer more difficult than the treatment itself.
She tells me my reaction is normal, which is reassuring because I felt like I was going crazy.
Many of us have an identity crisis after treatment. Talking about it helps
It helps to understand why it is happening. Fear of recurrence is overwhelming because your brain is designed to keep you safe, so it looks for the worst-case scenario, causing spiraling thoughts.
This increases stress hormones and leads to a hyper-vigilance of sensations in the body. It’s a vicious circle.
How to deal with? Talk to someone. “Navigating life after cancer can feel lonely,” says Davies. “Connecting with others who ‘get it’ through a peer support group can reduce feelings of isolation and provide a sense of hope.”
Finding your tribe is important because it can be difficult to share your feelings with your friends and family.
That may sound counterintuitive, but those closest to you want you to be better so they don’t have to worry anymore.
Watching someone you love undergo cancer treatment is horrible. When it’s over, they want to hear that you’re fine and happy, and it’s hard for them to understand when that isn’t happening.
Even if they’re really understanding (as Jonathan is, I hasten to add), it can be hard to take your fears out on them, when they have the same fears and you can easily get each other into a state.
Talking to others in the cancer community, whom I’ve met through Future Dreams, a London-based breast cancer charity, has helped me immensely.
Nationally, Maggie’s Centers teach a seven-week course called Where Now? for people who come out on the other side of cancer treatment.
Breast Cancer Now has a similar course called Moving Forward, which is accessible to everyone online. And Life After Cancer (life-aftercancer.co.uk) has a mix of online and in-person groups and courses.
Talking about it can help you find out who you are now, because many of us go through an identity crisis after treatment.
Perhaps you were defined by your job, but you decided to step away from your job to create more balance. Or maybe you used to be the drunk in a friendship group, but now choose not to drink alcohol.
Personally, I’m lucky that my friends have accepted that drunken nights are no longer my thing, and that I’d rather meet up for brunch or a walk.
“After a life-changing event like cancer, values and priorities change,” says Davies. “Clarifying your identity will help you live a life consistent with who you are after cancer.” And give yourself permission to look ahead.’
This is important because many people avoid planning for the future for fear that they will somehow “curse it” by daring to believe that they will still be cancer-free.
But having something to look forward to is positive and important. I’ve had to accept that the fear of recurrence will always be there, but it gets better with time.
At the end of June I was cancer free for two years, which is an important milestone.
“You’re not defined by cancer,” says Davies. “Life after cancer can be filled with resilience, hope and opportunity.”
I now know that the end of cancer treatment is almost always the beginning of something else. What that “something else” is is up to you.
- Rosamund Dean is the author of Reconstruction: How to Rebuild Your Body, Mind and Life After a Breast Cancer Diagnosis, published by HarperCollins, £16.99*