Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
I certainly am not like some people who try to present the perfect façade of their lives, but I do not want to be a downer, either.
Being on social media sometimes makes me feel like an old fogey. I have no idea how to use most of it, because Snapchat and Twitter are mysteries to me. A good friend once remarked that a smart phone can make one feel so dumb. He is right.
I am concerned about the dangers, parental controls and perverts on social media who prey on children and teenagers. I am not naïve and know some of the aspects of these features can be bad.
What we cancer survivors need to realize, however, is how we can use it to our advantage. I am usually a glass-half-full person.
Before my diagnosis of myelodysplastic syndrome, I was on Facebook a little. I mostly used the Internet for research, and as a former librarian, this is easy for me.
I made a conscious choice to primarily use Facebook. I have limited time and energy to learn about Twitter and some of the other parts of social media. Each person needs to decide what he or she wants to learn and do. However, I do use Facebook and messaging. I try to remember how I coped without texting, and it was not well!
Facebook for me has become more than a fun social media platform to catch up with friends. Instead, it is a wonderful support system.
In an earlier article, I wrote on how it is OK to be vulnerable. I hesitated for a long time to put anything that showed weakness or sadness on Facebook. I certainly am not like some people who try to present the perfect façade of their lives, but I do not want to be a downer, either. I would stick to pictures of my vacation spots and my hearing ear dog. She is very cute (yes, I am prejudiced) and often gets over 100 hits. I told my veterinarian I am lucky to get 30, but the dog is cuter than I am!
This time, however, I was despondent. I was suffering from a stubborn upper respiratory infection I couldn’t get rid of. I was hurting and sick from the chemo. My medical bills were mounting rapidly. I was depressed with the gloomy winter weather in Ohio.
I simply got on Facebook and asked for thoughts and prayers. I was overwhelmed with over 100 hits and dozens of supportive comments including some thank yous for being real. I realized then that while people do not want gloom and doom all the time, they want the chance to be human.
I started putting all my articles from CURE on Facebook and the response has been gratifying. I discovered that not only were people diagnosed with cancer responding, but some with other problems found the articles helpful and inspiring. I have a faithful following of readers to constantly encourage me.
The responses have gone even further. CURE readers outside of my personal network began to friend me and I message and chat with them online. Some of them are thousands of miles away. As a result of my postings, some of the articles have been reposted in oncology nurses’ websites, essential oils websites and a hearing aid company. This is the gift that keeps on giving.
Through CURE, I also have found out about other support groups like the Aplastic Anemia and Myelodysplastic Syndrome International Foundation (AAMDSIF). I am presently sharing information and articles with them.
Some people have sent me hand written letters and thanked me for my encouragement. This all never would have happened without social media.
I spend much more time on Facebook now, and no longer consider it a waste of time. I keep in touch with other cancer survivors, my former students I taught in college and people I worked with. I share in their joys and sorrows. I got a ton of support this summer after my hearing ear dog had a nasty elbow surgery for arthritis. And yes — people support me through the tough chemo days.
Therefore, for my comrades who are battling any disease like cancer, social media can be a lifeline, especially on those days when you feel too exhausted to go out, or am afraid of getting an infection because your immune system is so repressed.
So, if you feel alone, remember that social media can be a dark web or your best friend. You can make it one of your biggest supports. I never dreamed I would be so happy that I did!