If you know someone who is battling cancer, you may be following his or her progress on social media. Websites such as CaringBridge, a free web community that allows patients and their families to set up an account and post updates on their progress, and (of course) Facebook have become popular sharing platforms for many who are facing cancer and want to share their journeys with friends. It’s easy, interactive and can reach hundreds of people with one click. More importantly, it’s a way for friends and family to express their feelings and become part of a support community.
Evanston mom Jill Vannatta was diagnosed in January 2014 with a brain tumor in her left ventricle. According to her husband, Jeremy, it was Jill’s close friend and fellow Evanstonian Jenni Suvari who started a CaringBridge page post-diagnosis and wrote the first few posts.
“I was reluctant at first to share anything because I thought it made the diagnosis real, and it put us in a bucket I didn’t want to be in,” Jeremy says. As he came to terms with the diagnosis, he remembered the strength his mother had found from posting her story on CaringBridge six years earlier. In addition to tapping into some of that strength, it made communication so much easier. “There are so many people you have to tell in person, and so many texts and emails, it is nice to be able to simply provide a link and ask people to read up rather than walking through the whole story every time,” he says.
In addition to the ease of use and efficiency of the site to reach so many loved ones at one time, Jeremy and Jill agree that the comments on the site are a source of strength and encouragement.
“As you look through those comments, you really get a sense of who Jill is or how she is perceived,” Jeremy says. “In addition, as the primary post provider on CaringBridge, I have found it is a nice place to both document the events as well as draw strength from having a voice in all of this. So much happens to us that we cannot control, I can at least control the message and the timing. I get a lot of joy from seeing who posts and what they write. I think that positive feedback loop is really the best thing about it.”
Now, more than a year after being diagnosed, Jill has worked hard to recover from her initial surgery to remove the tumor, the subsequent side effects of chemo and a drug trial, but thankfully, her latest MRIs are “clean.” Jeremy signs every post with “Making lemonade,” a phrase he adopted early on to conclude his posts.
“‘Making lemonade’ came about sort of organically,” Jeremy says. “I told Jill I wanted to have something that was ours. From very early on in my relationship with Jill it was a mantra of hers to look at the bright side of things, and she has spent so much time preaching that and inculcating our kids to that. We got dealt some lemons, but you know what, if you sit down and really think through it, there is a lot of lemonade getting made. It turns out ‘making lemonade’ just worked for Jill’s disposition and it continues to be a rallying cry for us.”
Stephanie Horgan is a licensed clinical social worker for NorthShore University HealthSystem, does psychosocial oncology research at NorthShore and is a therapist in private practice. She says that often when a patient is diagnosed, many friends and family want to be informed with updates. “The barrage of medical questions can be exhausting for a patient or family member to retell throughout treatment,” she says. “Reliving these painful experiences by talking about them constantly can be unhelpful.”
To provide updates, Horgan recommends having a central online location such as CaringBridge. Horgan adds that many others just use whatever social media sites (Facebook, a blog) they are on to do this or send emails to a group of people.
Horgan suggests additional websites to help organize groups of people offering support. Lotsa Helping Hands, for example, allows people to sign up to bring meals or help with tasks the patient needs assistance with, such as transportation or childcare.
“I educate patients on the benefits of various social supports in their life,” Horgan says. “Some people may be able to support them emotionally, some more practically, some may help distract them, and it’s good to know who to call and when.” She notes that everyone deals with their diagnosis differently, so she encourages patients to do what they feel is the most helpful. “Some may need to write about their experiences and share it with the world, some may be completely private, and there are people in between those extremes,” she says. “All are OK, and I help patients identify what feels right to them.”
While sharing sites can be immensely helpful, Horgan offers a couple notes of caution. For one, she reminds people that once something is online, it is out there permanently. And secondly: “There may be a few loved ones who offer unwanted advice or magic cures, and this can be frustrating and unhelpful to a patient. Choose carefully who you want to share your journey with and [whether] comments are allowed to be posted.”
Matt Paolelli, 32, lives in Park Ridge and will celebrate his one-year wedding anniversary on September 6. In October 2014, he discovered a lump on the side of his neck. The diagnosis was early stage Hodgkin’s lymphoma.
“Writing has always been my therapy of choice for dealing with changes in my life,” Paolelli says. “I knew from the beginning that I wanted to be as open as possible about this chapter of my life, so a blog seemed like the perfect vehicle for keeping everyone I know up to date, as well as sharing my experience for anyone else who might happen upon my blog when they find themselves with a similar diagnosis.”
In addition to his blog, Paolelli has also uses Facebook to keep people updated and to ask for people’s prayers when things aren’t going well, or if he has an important test coming up, he explains.
“My Facebook friend network has become a true source of support throughout this journey,” he says. “The messages I receive via social media have brightened many a dark day and remind me that I’m not fighting this battle alone.”
He also created a hashtag, #DownWithLumpy, to help cheerlead the demise of the lump in his neck. On the first day of his chemotherapy, his wife provided him with an incredible surprise using that hashtag.
When he woke up the morning of his treatment, he found his Facebook newsfeed was filled with supportive posts from friends using the hashtag. She even got Northwestern’s president and football coach to take #DownWithLumpy photos.
“It was surreal and incredibly inspiring to see so many people supporting me,” Paolelli says. “I was no longer nervous about chemo and spent the rest of the day checking out all the wonderful posts people were making. As a proud Northwestern alum, that made it even more special and impressive to me. On Twitter especially, the hashtag really seemed to take off and people I’ve never even met were sending me tweets of support.”
Thankfully, though not without a few hospital stays, the chemo treatments are doing their job and Paolelli’s prognosis is great. He says that there is no way that he could be as successful in his cancer battle as he has been without the support and prayers of so many people.
“The ritual of recording what I’m going through has not only helped me to process everything, but is already something I look back on to see how I have progressed as a person throughout this journey,” he says. “I’m glad that I will have a detailed log of everything that I went through in this battle. One day I hope to share it with my children.”