For those of us who have witnessed or felt its devastating impact, the word cancer instantly strikes fear into our hearts.
Yet it has been 17 years since it last took a member of my close family and times have changed. Back then we were still using screeching dial-up modems, Google still felt shiny and new – and cancer treatments were less advanced.
I was privileged this week to speak with Dr Bex Lewis at an #HonestTalks event focused on social media run by Fourth Day PR. A senior lecturer in digital marketing at Manchester Metropolitan University and expert on the digital landscape, you would expect her to extol the virtues of social media.
But she does so with a very good reason: it helped her through a recent battle with breast cancer.
“I don’t know how I would have coped ten or so years ago when there was no social media, the medicine was rubbish and there was no Netflix,” she says with a smile.
“I spend a lot of time on social media already so it’s a natural environment for me – I tend to see it as a space where I live part of my life. And cancer has now become part of my life.
“It allowed me to deal with it stage by stage, particularly the Facebook groups I was a part of. I found it quite cathartic.”
The cancer also spread into her lymph nodes and shoulder but she has been NED – No Evidence of Disease – since September. She has endured surgery, chemotherapy and radiotherapy, and is now beginning a course of hormone treatment that will last ten years.
The Facebook groups allowed her to connect with other people in the same situation, which had the effect of keeping her both calm and informed.
“These days they are really pushing patient-centred care, where you’re expected to take decisions,” she says. “The first day I was told I had cancer, I had to go home and decide if I wanted fertility treatment, a lumpectomy or mastectomy, and whether I wanted to stay in Manchester or go and live with someone else elsewhere in the country to look after me.
“I had 48 hours to decide all this as they needed to do the surgery but, if I wanted fertility treatment, they’d have to do that first. A lot of people don’t know that cancer can kill off your fertility. It’s a lot of information to take in.
“When I was on the groups, I could say, ‘right, I’m starting chemo next week, what are the things I really need to know?’ And someone would tell me, ‘take a drink with you, paint your nails black to stop them falling off…’
“If you see someone else has suffered the same symptoms, you know you don’t need to go rushing off to the GP – it reduces the panic. I found it overwhelmingly positive: it’s a mix of information and being with other people.”
Referencing Harry Potter, she adds: “We referred to people who don’t have cancer as Muggles – people who aren’t in the know!”
Sussex-born Dr Lewis, 43, says it can balance the frightening nature of previous media portrayals of cancer.
“If you just looked at the other stuff you can find online, you’d be terrified because you only see people vomiting and their lives coming to a halt. The whole experience has been rubbish – but nowhere near as bad as what I expected from what I’d seen,” she says.
“I wasn’t physically sick once. I felt sick for about ten days after each chemo but they give you really good meds for everything. I also froze my head so I haven’t lost my hair. It really throws people when I tell them I’ve only just finished cancer treatment because I don’t look like it.”
Alongside her academic research, Dr Lewis is also a prolific public speaker and the author of two books: Raising Children in a Digital Age and Keep Calm and Carry On: The Truth Behind the Poster. A committed Christian, she also supports several charities.
She says there was no question of her “hiding” her cancer.
“Once I’d told work and my Mum and a handful of friends who knew I was going for tests, I put it publicly on Facebook the same day because I don’t think it’s something you can hide.
“I know some people aren’t ‘out’ with cancer, but I don’t know how they do it. I had two-and-half months off work for chemo then three-and-a-half weeks off for radiotherapy and I’ve had to adapt my duties.
“Some people are worried about putting that kind of content out there [in case it’s perceived as a weakness], while others believe that it’s not anyone else’s business.”
Posting regular updates on social media meant she didn’t have to explain her situation “300 times” to people she knew. “I took back some of the control over what I shared,” she says.
Dr Lewis has met with several members of her Facebook support group in person but its very nature means there is always the possibility that newfound friendships will end with death.
“You just have to face all of that,” she says. “One of the group admins said that one of the things they find quite hard is that when someone dies, their job is to take that person out of all the groups. Once a month we have a light a candle evening to remember those who have died.”
Dr Lewis is hoping to work with charity Macmillan to research how information flows in cancer-led social media groups.
“You can’t watch it and report back on it as that’s ethically problematic, but I can ask people what they’ve found helpful,” she says.
“I’m hoping to get a research assistant for three years to talk to patients with all types of cancer and find out if different types of cancer use social media differently.
“With breast cancer there are a lot of young women, for example – and do men suffering from prostate cancer talk about that anywhere near as much?”