Social media and the changing face of cancer

This is the Accepted Manuscript version of a Published Work that appeared in final form in the British Journal of Nursing Oncology Supplement, copyright © MA Healthcare, after technical editing by the publisher. To access the final edited and published work see http://bit.ly/1jvUOu0, Originally published May 2014

 

Eleven years ago, my mother died of stomach cancer. Facebook was still in the womb, Google wasn’t yet a verb and the ‘C’ word was still taboo.

 

Friends who were happily chatting would suddenly go quiet when I appeared. Everyone felt obligated to look sombre and to refrain from talking about anything fun or mundane around me—I felt completely alienated. Of course, that experience wasn’t new to me. Reactions like these had become commonplace ever since my mother received her cancer diagnosis 16 months before.

 

As she went through surgeries and many months of chemotherapy, I would spend my evenings after school visiting her in the hospital while others headed to friends’ houses or parties. It was a time in my life when I imagine it might have been comforting to know that others shared my experience—that I wasn’t alone. If I felt so desperately in need of an outlet for my chaotic emotions, I cannot begin to imagine what my mother was going through in her late 40s when she was told that a tumour the size of a squash was living in her stomach, threatening to take her away from her husband, her two children, her job as a nurse, and potentially the long and healthy future she had been counting on. I wonder what it might have been like had she had access to a network of people any time of the day or night, who were sharing her experience—and who were not afraid to talk about it.

 

Today, there are countless cancer-related websites, Facebook groups, blogs and trends on Twitter that are opening up communication around cancer, tackling the associated stigma and connecting people with other people who share the realities of what it means to live (or die) with a cancer diagnosis. Patients can experience the catharsis of sharing their personal stories and the reassurance that comes from learning that their symptoms, treatment side-effects and emotions are shared by others living with cancer.

 

Our increasing ease with the internet, social media and the idea of sharing of personal information has revolutionised the way we communicate about cancer, and in general. There used to be a hierarchy of communication where anything online was at the bottom, reserved for young people and idle chat about trivial matters. I could never have imagined then that our comfort with technology and with the idea of connecting with strangers across geographical and emotional boundaries about experiences as personal as living with cancer would grow to what it is today.

 

There are numerous examples of people with cancer using social media to seek support, raise awareness and even raise funds for research. The first one that comes to mind is 19-year-old Stephen Sutton from Birmingham who charted his journey of bowel cancer on his website, Facebook group, Twitter, Instagram and YouTube, raising more than £3.5ž million for teenage cancer  research and winning over more than 1ž million strangers before passing away last week. Of course, we are losing young people to cancer every day, but by sharing his story Stephen touched people, connected people, and opened up the dialogue around
living with cancer. He also had the courage to go that step further in sharing what it was like on bad days, how he felt when he thought he was facing death, and saying goodbye online in his last days

 

There are many websites, forums and Facebook groups, usually started by cancer survivors or their family members, that exist
to provide support to patients with cancer. The Facebook Sucks group, CancerConnect, TwistOutCancer and StupidCancer are just a few examples. There have also been several online and social media campaigns, perhaps most notably the #nomakeupselfie trend on Twitter, which began organically and ended up raising more than £8ž million for Cancer Researchž UK and other charities. It received some criticism for being vain and irrelevant to cancer, but cancer has always been associated
with vulnerability. Shaving off our hair or removing our makeup are in this vein, doing away with superficial differences and
connecting us. This is why it works.

 

Another way in which online and social media platforms have become important for patients is in terms of seeking out information about their disease. Nurses and other health professionals provide invaluable information and support to patients when they meet face to face. But the reality is that patients facing a cancer diagnosis are often not in a position to retain the information being given to them, and the questions that escaped them during their appointment, along with myriad uncertainties and fears, can come knocking when they are alone, in the middle of the night, with no way to reach out to a nurse, support group or friend—except online.

 

However, there is very little dialogue in nursing about how to make the most of this resource for patients. Everyone from the
CRUK to Macmillan are on Twitter, and the Nursing and Midwifery Council (NMC) (2013) has produced guidance about the
responsible personal and professional use of social media for nurses and midwives. But never do we hear about how to advise
patients to access the many resources and support networks available online. The way we communicate, the way we access information and the way we seek support has changed—will nursing change too?

 

References
Reno J (2013) Can Twitter cure Cancer? The Real Story of Social Media’s Impact on Cancer Patients. http://tinyurl.com/m7luqxo (accessed 15 May 2014)
Nursing and Midwifery Council (NMC) (2013) Social networking sites. http://tinyurl.com/p8pyj5y (accessed 15 May 2014)