I recently caught up with Sara Liyanage, author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer.
Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. The website provides practical advice for each step of the way, together with many signposts to other online resources and lots of personal stories.
Hi Sara, I’d like to start off by asking you to tell us how you got started with social media. What prompted you to get involved?
SL: In 2017 following treatment for breast cancer, I set up a website (www.tickingoffbreastcancer.com) for people going through breast cancer treatment and those trying to move on after treatment. The website is a simple one: lots of practical tips and links to good online resources. There’s a lot of information across the internet that people – who in a vulnerable state due to their cancer diagnosis – aren’t finding or accessing because they are are either too nervous to research the web for resources and/or they are overwhelmed with what’s available. I aim to do the research so they don’t have to. I’m constantly updating the links to new information as and when I find it or I’m directed to it by people who I chat to on social media. I also publish a guest blog every week from either an expert (such as a lymphoedema specialist) or someone who is going through or has finished breast cancer treatment. In September last year my book was published (Ticking Off Breast Cancer). This accompanies the website by providing simple practical advice and also talks about my own personal experience of having treatment for breast cancer.
Was the launch of your website your first foray into social media?
SL: I started using social media when I launched the website. I’d created a site that I was hoping would help people going through treatment, and I then needed to get this site out to those people. So I set up accounts on Twitter, Instagram and Facebook to help raise awareness of the website. I soon realised that using social media wasn’t just about raising awareness of my site – it was about becoming part of a cancer community and helping people that way. A lot of people turn to social media when going through cancer. There is a huge community of people providing help and support to those, whether by words of encouragement, sharing practical advice or providing tips for treatment. I found myself in this community and joined in.
I love the idea of social media being an extension of community – it’s something that resonates very strongly with my own work too. Which social platforms do you most enjoy using to build community and share information?
SL: I enjoy using all three platforms (Twitter, Instagram and Facebook) and I’ve found that they all work well in different ways. For example, Twitter is good for chatting about a topic and sharing tips and resources that I come across. Instagram is good for sharing personal updates and interacting with people on a more personal level. And Facebook works well for providing links to useful websites, articles and to things I post on my website.
Which particular topics most interest you online?
SL: I tend to focus on supporting people as they go through breast cancer treatment and try to move on once treatment ends. So I look out for good tips, advice and resources that would help someone in this position. For example, I share articles that I’ve come across that deal with treatment side effects; personal stories from people going through it; articles on exercise and nutrition; recipes; reviews of cancer books; information about support groups, networks and centres; and anything that might be of use to someone going through or finishing treatment.
Do you have any advice for patients using social media?
SL: On balance, social media can most definitely provide more support than discouragement, but for anyone dipping their toe (or whole body) into the social media cancer community it is worth remembering:
1. Use it carefully.
2. Don’t get too invested – dip in and out.
3. Be kind and understanding of others.
4. Don’t take anything too personally.
5. Don’t compare yourself to others.
And if you do all of this, you will hopefully benefit from what is, on the whole, an incredibly warm and supportive place to visit.
Great advice Sara. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?
SL: Oh there are too many to choose from!! I love a good quote and I started each chapter in my book with a different quote that resonated with the subject matter of the chapter. I guess, I would say that one of my favourites is, “She stood in the storm, and when the wind did not blow her way – and surely it has not – she adjusted her sails.” Elizabeth Edwards.
I love that quote too. What a great note to end this interview on. Thanks so much Sara for taking the time to share your social media journey with us.
This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.