A woman who was the primary caregiver for her sister with cancer writes about how she regrets not utilizing social media to share updates throughout the treatment journey.
In many ways, I think I am an outlier. One way that I have no doubt that I am an outlier is that I was incredibly late to entering the world of social media. I dabbled in it as a teenager but shied away for quite some time as an adult. It was not until the last few years that I joined Facebook and Instagram, and later even that I caved to the pressures of friends and joined Snapchat. I am still, however, holding out on TikTok.
I think about how isolated I felt the first time that my sister had cancer – how overwhelming it seemed to update those outside my family who wanted to know what was going on. I think back and wonder why I did not start a Facebook page or a blog to keep everybody updated, and in all honesty, it just never crossed my mind. I wish that it had.
After she gained remission, I met many families who utilize the power of social media when a loved one has cancer. Most pages are for kiddos battling cancer because it keeps others updated and gives parents a place to seek support and vent frustrations about cancer. That is why I have regrets. Because when facing the unknowns, I wish that I could have connected with the masses and sought advice. Not only for advice on what to do, but how to cope and who to talk to. I did not have that help, but I wish that I did.
Through my writing with CURE®, I can connect with others. I see the power of social media that I did not understand before. I get emails about my articles, and when I attend ONS, people come up and ask me about my story and seek advice. It is strange for people to ask my advice when all I wanted during cancer was to receive guidance.
The thing about social media is that it is a ready-made platform that already exists. All that we have to do is use it. You can blog about your journey if you are the one going through cancer. If you were like I was, and you are the caregiver, you can blog about how hard it is to care for another. Or you can write letters about cancer and post them on a forum to avoid being left with those thoughts ruminating in your head. If your spouse is the one sick, creating an Instagram of photos taken throughout cancer may be therapeutic, and looking back later, you will have memories to hold on to.
I know for me, providing news that was both good and bad was often challenging to do. Sharing what is so personal can be difficult, and when people know dates and times of scans that are often life-changing, they do not wait for you to be ready. It is not that they do not care for your privacy; I have found that they often do not think about it. Had I been able to share, in my own time, with the computer screen as a buffer between my emotions and the rest of the world, I think I would have been more open with sharing our cancer journey while it unfolded than I was.
I encourage those enduring cancer to seek digital platforms as an outlet. Having the support of others, even when you do not know them personally, creates a connection that can be lacking with cancer. I have found social media to be a phenomenal way to make those connections. It is something that I wish I had done at the time, and I am grateful that I have taken steps in doing so now.
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