When people find out that you have received a cancer diagnosis, they want to know the details. When you are on the receiving end of that diagnosis, as I was in early 2017, you very much want to connect with people. It is predictable and perfectly normal to want to communicate personally and individually with as many people as possible. But it soon becomes impractical and overwhelming. Indeed, by the first weekend in March, I realized that I would not be able to do it through email, texts and phone calls. The good news is that the solution to keeping family, friends and colleagues informed was already available.
I remember pondering whether to use popular social media to keep people informed. But I decided that FaceBook, Instagram and Twitter would not work for me. I knew that some people use these platforms for this purpose, and I do not judge or second-guess that choice. However, at the time, I found myself feeling strongly I did not want to be defined by the cancer. I did not need for the whole world to know. And therefore, I wanted a more private approach to communicating. There were only a couple of hundred people who I felt I needed to keep informed.
(While I now know that many more people would have wanted to know what I was going through, I know made the right decision given how I felt at the time. But I am deeply appreciative for the best wishes and prayers of the larger network colleagues and associates, and even friends I had lost touch with.)
The solution was CaringBridge. I am sure than many of you were already very familiar with CaringBridge. Before my diagnosis, Deb and I had experience with CaringBridge as it was the vehicle that close friends had used during their cancer journeys. Here’s what Wikipedia has to say about CaringBridge:
CaringBridge is a charitable 501(c)(3) nonprofit organization established in 1997.that allows people facing various medical conditions and their family and friends to communicate. CaringBridge is the first non-profit social network with global reach whose mission is to connect loved ones during a health journey through personal, private websites. CaringBridge prioritizes privacy with no advertisements or selling of user data. People who are provided with an individual’s personal website address (URL) and password can read updates on the individual’s condition or post messages to the family as needed. CaringBridge is headquartered in Eagan, Minnesota. All CaringBridge sites are free and CaringBridge is funded by donor support. Since its inception, over 740,000 CaringBridge sites have been created by people all over the world.
It is easy to set up and it is easy to use. The functionality is excellent. Not only do you have a private way to share your experiences, feelings, challenges, victories and set-backs with your family, friends and colleagues, you also end up with a history of the journey, written in real time. I set up my CaringBridge site on March 4, 2017. Below is the text from our first, introductory post on our CaringBridge site:
Welcome to our CaringBridge website. On February 14th, 2017, we first learned that Lee had cancer in his throat. Since we first shared the news with family and friends, we have received an overwhelming outpouring of support, love and prayers. And everyone wants to stay informed. We are using CaringBridge to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We welcome questions and input as we continue this very different journey. Thank you, thank you, thank you.
And from that point forward it was my primary way of sharing details about my condition, treatments, prognosis, trials and tribulations. It was also an important and valuable way to receive encouragement, support, prayers and positive energy from my amazing support group.
As you might recall from one of my earlier posts, I had set our tem principles that would guide me in my battle with cancer. One of the principles was to document the journey. This principle was important to me. I wanted a contemporaneous record of my thinking, feelings and experiences. I intended to learn from re-reading the record later, use it to develop and share my lessons with others. In writing posts for this blog, the records I kept are invaluable as sources and to jog my recall of my emotional, mental and physical state at various stages of the journey.
For the first three weeks after the initial diagnosis, the documentation of my journey was captured in my two journals: 1) my short and sweet, digital “5-minute journal” captured in Evernote; and 2) my longer, handwritten journal. As I proceeded with treatment, I lost the energy and concentration to do the handwritten journal each day as I had been trying but failing to do. I did better on the 5-minute journal, at least until mid-April. As the side effects of the radiation and chemotherapy treatments took their toll on me, even that fell away. But I did not waiver in writing posts for CaringBridge, which became the primary record of the most challenging part of the journey.
I wanted and needed to keep my support team informed. I knew that my CaringBridge posts would keep me true to my “document the journey” principle. But if I am to be fully transparent, I know that the main reason I stayed the course and continued to provide updates in CaringBridge was because of the encouragement I received from the people who were with me on this very different journey. Without that support, I would not be here typing this post right now. Thank you, thank you, thank you.