A WOKINGHAM woman living with incurable breast cancer hopes her experience will help others.
Talking about breast cancer can be difficult but Caroline Saunders, 38, is sharing her story to encourage others to be more open and honest about the disease.
Since her primary diagnosis nearly 10 years ago, new research shows that breast cancer rates have risen by 20% in the South East of England.
Caroline was just 29 when she heard the words, ‘I’m really sorry, but it’s breast cancer’.
Single, and living alone, she worked full-time in the rail industry as an assistant project manager.
“The railway industry is very male-dominated, and I had always felt that I was ‘one of the lads’ and could keep up with the office banter,” she said.
“But then I got breast cancer.
“And when some people found out, they started seeing me differently.
“I’d get the dreaded sympathetic head tilt.
“And people would say things like, ‘I don’t know how you do it, you’re such a hero.’
“And what I really wanted to say back was, ‘I don’t have a choice, either I take the treatment, or I die’.
“But just smiling and saying thank you was the easier option.”
Caroline felt like she was the only person her age having to deal with the medical complexities, emotional turmoil and harsh realities that come with a breast cancer diagnosis.
As a result, she found it hard to open up and talk about how she felt.
“When I was first diagnosed, people didn’t discuss breast cancer,” she said.
“No-one knew how to talk to me about it, and my male colleagues found it particularly challenging.”
“I felt like there was no information for young people like me, no advice to young women about checking their breasts, nothing about their treatment, and no resources for them.”
Caroline continued to work full time, with treatment fitted in with going back home to log on and work on her computer, in an attempt to keep life as normal as possible.
“When you have cancer, your body is doing what it wants, doctors are telling you what treatments you are going to have, and you’re not in control,” she said.
“I’m a project manager, and organising is what I do, so not being in charge of what was happening to me was very difficult.”
When, after months of challenging chemotherapy and radiotherapy, Caroline was told she had no evidence of disease, she embraced life beyond breast cancer.
“I wanted to get back to normality,” she said.
“Cancer had taken 18 months of my career and I wanted to build that back up.”
She took on new opportunities, relocated, and bought her first home, in Wokingham.
“It wasn’t about travelling around the world,” she said.
“It was about getting my life back to where I wanted it to be.”
However, nearly a decade later a routine check-up revealed the breast cancer had returned.
It had spread to Caroline’s bones, and she was told that she now had incurable secondary breast cancer.
She said: “It felt like a punch in the gut.
“I was, I still am, so young, so how can this be happening to me?
“I had no symptoms to suggest my breast cancer had spread, and I was nearing the end of 10 years of hormone treatment – I felt fine.
“But in that moment I had to try and accept the reality that I will be on cancer treatment for the rest of my life.
“How do you begin to accept that, and more importantly, how was I meant to talk to anyone about how I really felt?”
Caroline recognises how hard it can be to know what to do or say to someone living with a cancer diagnosis.
“One of the things that I have found helpful is when friends ask me what I need, rather than how I am,” she said.
“Obviously, when I have been through a big upset, it’s lovely to ask how I am.
“But it’s not a great question for general conversation.
“It’s all too easy for me to give the stock answer, ‘I’m fine’ when, actually, I might not be.
“But if you ask me what I need, that gives me the opportunity to say how I’m feeling if I want to, without defining me by my diagnosis.
“Ask me how my week’s been, about my job, or wider questions about me as a person.
“I’m still the same, cancer doesn’t change who you are.”
Caroline is sharing her story now to help people start conversations about the disease.
She is taking part in Breast Cancer Now’s Real Talk campaign.
The charity provides all age information and support for people with breast cancer and their families.
“I am passionate about Breast Cancer Now’s Real Talk campaign,” Caroline said.
“It will help people discuss the things that are hard to communicate.
“No-one knew how to talk to me about cancer 10 years ago.
“No-one told me about the mundane things that would happen.
“The information wasn’t there for me when I needed it.”
Caroline is determined to help bring about change.
“Now, I’m an open book about my boobs,” she said.
“I want to lift the lid off the mystery, and remove any remaining taboos about diagnosis, treatment or post operative experience.
“I want to say, ‘yes, I have incurable breast cancer, but I am also still alive and I want to carry on living while I can’,” she said.
“I want the Real Talk campaign to enable people like me to feel more comfortable to live as we are.”
Rachael Franklin, director of communications and engagement at Breast Cancer Now said: “As a charity, we’re on a mission to open up honest conversations around breast cancer.
“We’re here as a safe space for people to turn to if they want to talk to one of our expert nurses, but we also want to help anyone affected by breast cancer, whether the person diagnosed, a family member or friend, to have these conversations with others in their lives.
“Our ambition is that by 2050, everyone diagnosed with breast cancer lives, and is supported to live well.
“And a huge part of living well is feeling comfortable and safe to talk about how you really feel and what would help you to navigate this difficult time.
“We’re here for everyone affected by breast cancer, however you’re experiencing it, and have support services and resources to help make these difficult conversations easier.”
For breast cancer information and support, and to learn about the Real Talk campaign, visit: www.breastcancernow.org
