Which phrase would you imagine is more difficult to hear: ‘You have cancer’ or ‘Your treatment is over’?
After being diagnosed with primary breast cancer, I was blind-sided to find the second statement so much harder to absorb.
On the day I found out I had the disease, I was 40 with two small kids and a busy job. Clearly, it was not ideal to have cancer, but I felt confident about getting through it.
And the admin of cancer – letting family and friends know, telling work, sorting out childcare for chemo, juggling appointments for scans, surgeons and oncologists – crowded out any fears.
Once treatment started, I realised the brutal reality. My hair fell out in clumps but losing my lashes and brows was worse since, my face puffy from steroids, I couldn’t recognise myself.
Rosamund Dean underwent gruelling treatment for grade three, stage three, triple negative breast cancer, but it was life after treatment that proved more challenging
I was plunged into early menopause causing a litany of unsexy side-effects including osteoporosis, joint pains, mood swings and brain fog. And then came the surgery to remove my right breast, leaving me scarred and grief-stricken.
I tried to focus on the positives: I was diagnosed in time for treatment to be curative, so my hair would grow back, my breast could be reconstructed and, although I wasn’t able to have HRT, I’d find a way to adapt to medical menopause.
My diagnosis of grade three, stage three, triple negative breast cancer was comparatively high risk, so treatment took 18 months with radiotherapy and further chemo after surgery. When it was finally over, I expected to feel euphoric.
But cancer treatment doesn’t tie up in a neat bow. No doctor ever says you’ve got ‘the all-clear’, like they do in films. They won’t even say you’re ‘cancer-free’, because there is no way of knowing unless you had an MRI yesterday.
Even then, a tumour has to be a certain size before it can be seen on a scan, so the best you can hope for is ‘no evidence of disease’.
Once you have had breast cancer there is always a chance that it could come back, with some cancers (such as triple negative) at higher risk.
One surgeon told me there is a 40 per cent chance that mine would be back, so I should be ‘extremely vigilant’ for any pains that might signal it has spread to my bones, brain, liver or lungs. If that happens, it will no longer be curable and I’ll be on chemo until I die.
And so, when my treatment ended, I left the hospital not with a skip in my step, but with a bleak sense of doom. I started having 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 on from the end of treatment, Rosamund has found she is finally able to look forward again and plan for the future
A visceral fear had me in tears several times a day. I’d torment myself by imagining how my husband Jonathan and our kids, now six and eight, would cope if I died.
I found myself researching grief counsellors and, hating the idea that they’d remember me decimated by chemo, trawled the Dignitas website.
Alongside my new fear of dying, I’d lost my identity. I’d look at photographs from my 40th birthday, and couldn’t recognise how fun, carefree and body confident I used to be.
Now I had a wardrobe of clothes I no longer wore because I’d spent so long being a patient, I didn’t know how to get back to being myself.
Steph Davies is the founder of Life After Cancer, an organisation that facilitates support groups and coaching based on the astonishing statistic that 92 per cent of people find life after cancer harder than treatment itself.
She tells me that my response is common, which is reassuring because I had felt as if I was going mad.
Many of us have an identity crisis after treatment. Talking it through helps
It helps to understand why it’s happening. Fear of recurrence is overwhelming because your brain is designed to keep you safe, so it searches for the worst-case scenario, causing spiralling thoughts.
This increases stress hormones and leads to a hyper-vigilance of sensations in the body. It’s a vicious circle.
How to cope? 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 how you feel with your friends and family.
That might sound counterintuitive but those closest to you want you to be better so they can stop worrying.
Watching someone you love go through cancer treatment is awful. When it’s over, they want to hear that you’re fine and happy, and it’s hard for them to understand when that doesn’t happen.
Even if they are really understanding (as Jonathan is, I hasten to add) it can be hard to offload your fears on to them, when they have the same fears and you can easily work each other up into a state.
Talking to others in the cancer community, who I met through a London-based breast cancer charity called Future Dreams, has helped me immensely.
Nationwide, Maggie’s Centres run a seven-week course called Where Now? for people coming out on the other side of cancer treatment.
My recovery toolkit
Embrace exercise. It dissipates stress hormones while stimulating the production of endorphins, improving your mood. It also reduces your risk of recurrence, so has the added psychological benefit of doing something positive to protect yourself.
When I feel a twinge that I fear could be a sign of recurrence, I set a reminder to check on it in two weeks. It’s only worth worrying about persistent pains – but dwelling on it can actually make it linger. The act of writing it down gives your brain permission to forget about it for now, and often you’ll find it then gets better.
Steph Davies, founder of support group Life After Cancer, suggests being intentional about how you spend your time. ‘Think about the activities, people or thoughts that give you energy,’ she says. ‘Write them down. Then limit the time you spend on things that drain you and choose to spend time doing something you love: it could be a walk around the block with your favourite podcast, or a cup of tea in the garden.’
Breast Cancer Now has a similar course called Moving Forward, which is online so accessible to everyone. And Life After Cancer (life-aftercancer.co.uk) has a mix of online and in-person groups and courses.
Talking it through can help you work out who you are now, because many of us have an identity crisis after treatment.
Perhaps you were defined by your job, but have decided to step back from work to create more balance. Or perhaps you used to be the boozy one in a friendship group, but now choose not to drink alcohol.
Personally, I’m lucky that my friends have accepted that drunken nights out are no longer my thing, and I’d rather meet for brunch or a walk.
‘After a life-changing event like cancer, values and priorities change,’ says Davies. ‘Clarifying your identity will help you to start living a life in line with who you are post-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 ‘jinx’ it by daring to believe 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 two years cancer-free, which is an important milestone.
‘You are not defined by cancer,’ says Davies. ‘Life after cancer can be filled with resilience, hope and opportunities.’
I know now that the end of cancer treatment is almost always the beginning of something else. What that ‘something else’ might be is up to you.
Rosamund Dean is author of Reconstruction: How to Rebuild Your Body, Mind and Life After a Breast Cancer Diagnosis, which is published by HarperCollins, £16.99*