​A critical tool for teen/young adult cancer patients or survivors is social media.  Two years ago, I published a chapter in a book by the Healthcare Information Management Systems Society in which I discussed the value of social media from a patient’s perspective (you can find the book here if you want to read more).  Through my cancer treatment, I had found that social media was a lifesaver in helping me stay connected despite the isolation imposed by my treatment.  But, I did not have nearly enough of an appreciation of the powerful resource-sharing ability of social media until the last year or so, when my blog and book brought me into the world of podcasts and Twitter chats. 
 
However, I have also found that it can be a challenge to find resources through social media, since it is sometimes difficult to find relevant organizations and articles depending on the social media platform.  So, I thought it might be helpful to dedicate a post to how to use the power of social media when you are looking for resources and support.  No matter what stage of the cancer journey you are in, you can find answers to questions and advice through strategies and stories provided by organizations and other patients/survivors.
 
I know I’ve posted before about the benefits of Facebook and websites like CarePages and Caring Bridge for sharing updates with family and friends, as well as staying connected to the world around you when isolated by treatment.
 
What I have yet to talk about is the power of Twitter and Facebook for finding resources.
 
I didn’t have a twitter account until about 2 years ago.  I didn’t believe in posting short blurbs about what I was eating or where I was.  But, when I started to notice how many influential cancer support organizations were on Twitter, and sharing incredible resources, I realized that little blue birdie had something else to offer.  So, I turned my personal Twitter account into an account dedicated to my blog and book.  I started following cancer support organizations and people who were leaders in the effort to help adolescents and young adults get care that is appropriate for their age and unique social/emotional needs.  In doing so, I’ve noticed that Twitter can be an incredibly powerful tool to find resources.
 
One of the easiest ways to find resources on Twitter is by searching for hashtags relevant to the topic you are looking for.  So, to help give you a place to start, here are some hashtags that lead you to a list of tweets with helpful resources from awesome organizations:
 
#ayacsm – this is a great hashtag co-founded by Emily Drake (@EK_Drake) a health promotion specialist who has done some awesome work in helping promote the AYA cancer cause.  She was also part of a recent paper about social media use and online resources for AYA cancer patients and survivors (you can find it here). This hashtag leads you to twitter chat tweets, resources, and more.
 
#ayacancer or #tyacancer – these lead you to resources shared by great organizations like Teen Cancer America and the Ulman Cancer Fund.
 
#AYA –leads to resources from the Canadian Partnership Against Cancer (@Cancer_Strategy) and Young Survival Coalition, as well as the AYA Task Force.
 
#teencancer – leads to tweets by lots of different groups and individuals.
 
If you look up these hashtags, you can follow the organizations you find and be updated with resources they share.  For example, Teen Cancer America has a #MondayMotivation post, which is really great to read every Monday.  Also, by following organizations and individuals involved in helping teens and young adult cancer patients and survivors, you can find out about what they are doing.  Last week, there was a Twitter chat about #ayacsm in which people from around the world were allowed to share thoughts on how to get more people involved in the AYA cancer movement.  Avenues like that are great ways for us to voice our thoughts and share experiences.  Additionally, those kinds of things are great ways to connect with other patients, survivors, and advocates.
 
Similarly, Facebook can be really useful to find resources from helpful organizations and connect with other people going through similar experiences.  Most organizations have Facebook pages, so if you like their page, their posts will show up in your news feed.   This is an easy way to find resources that are new and helpful!  On Facebook, I follow Stupid Cancer and Critical Mass.  They both regularly post articles and resources that I think are really great.  Sometimes these organizations also have questions they pose or events they share, so you can find ways to meet other patients/survivors.
 
If you have any questions about using social media as a patient/survivor, feel free to reach out to me! I’d be happy to try to help you find resources related to whatever you are looking for.  Also, I encourage you to check out the resources page on my website, as well as the list of resources at the end of my book (Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, available on Amazon), to find out about more organizations to follow.

​In a recent article from U.S. News and World Report, reporter Lisa Esposito writes about the changing meaning of “cancer survivor” in the context of better cancer treatments and longer lives for those facing cancer.   According to the article, “Cancer advocates now consider survivorship as part of a continuum – from the moment people learn they have cancer, through treatment and beyond.”  I think this is such an important shift in definition to consider.  For so long, “cancer survivor” seems to have indicated that one has completed cancer treatment and, to me, it seems to imply that completion of cancer treatment equals never needing to confront significant health challenges again. 

However, as those of us who are cancer survivors know, that is not necessarily true.  Newer and better treatments mean we get to live through things that may have killed us before.  Yet, those newer and better treatments often come at a cost – long-term complications and the possibility of negative health outcomes.  I therefore seriously appreciate this article for recognizing the significance of the changing meaning of cancer survivor. 

As a psychology major with an interest in coping with illness, I have read many studies that refer to cancer as a chronic illness, primarily due to the duration of cancer treatment and the complex management of treatment-related health issues required of cancer survivors. 

When you finish cancer treatment, you suddenly see care providers you had seen daily or weekly only once or twice a year.  While some patients are involved in survivorship clinics that help them to monitor their long-term well-being, many are lost to follow up.  Additionally, it is easy to forget the importance of normal health monitoring after finishing cancer treatment.  Visiting a primary care doctor, a dentist, an ophthalmologist, a gynecologist, a dermatologist, or others are all really important things to do, especially if you suffer from particular late effects from treatment.  For teens and young adults, it can be really difficult to manage all these appointments and issues.  I know I struggle to remember to schedule my many different appointments each year, especially now that I get ready to graduate college and am searching for jobs – thus unsure of where I will be living next year.  At an age when our lives are changing so significantly, managing survivorship can be a lot to handle. 

As the U.S. News article highlights, quality of life is becoming a major focus for survivorship care.  While I think it is wonderful they discuss this, I believe that such a focus on quality of life in survivorship care still has a ways to go.  Especially in the case of teens and young adults, addressing quality of life for survivors should also involve teaching young people how to manage their healthcare so they do not leave home or move somewhere new feeling overwhelmed and confused.

If you are a teen or young adult cancer survivor and transitioning to college or a career, I congratulate you on reaching such an awesome milestone.  At the same time, I advise you to take some time to talk to your oncologist about ways to best manage your healthcare going forward.  Also, the National Cancer Institute has a great set of resources related to cancer survivorship and managing your healthcare after cancer treatment, so be sure to check them out too!  While it is wonderful to be done treatment, it’s really important to take care of yourself in the years to come and be prepared for any curves or bumps in the road that you may encounter :)