Short Shelf Life
Lung cancer bloggers are not always around very long. Our community is ever-expanding, but the sad truth is that we can expect a loss of our voices with some regularity. As a group, we actively advocate for understanding of this wide range of diseases under a seemingly simple banner. As a group, we raise a loud voice to encourage greater funding for research, to reinforce the importance of life-saving treatments, and to encourage hope in the face of daunting treatment options. As individuals, however, we have unique struggles and issues that can, quite suddenly, silence any one of us.
Beginning my cancer journey optimistically
When I began writing about my own lung cancer experience, I chose to focus on the expectation that I would outlive my disease. It was an ambitious position to take considering that I was diagnosed already at Stage IV, with multiple metastases throughout my body. Still, I knew that the changes happening in the way lung cancers are treated meant that I had a good enough chance of staying alive until the right treatment arrived to keep my cancer at bay. After all, it was something of a Golden Age of cancer treatment, with targeted therapies and immunotherapies cutting new ground with great promise. I began reading the diverse blogs of other lung cancer patients, increasing my optimism with their inspirational stories.
The weight of loss
But every chest cold, every cough, became a threat of infection. The specter of pneumonia hung over me with a heavy weight. I thought a lot about the few codas I had read on blogs, where a family member filled in the blanks, apologizing for the late update, detailing how the blogger had fallen ill and, quite rapidly, succumbed to pneumonia. It could come out of nowhere, hitting the patient during a period of suppressed immunity, and suddenly one more voice was gone. The sudden, aggressive advancement of disease, and another voice fell silent.
At one point, I shifted toward writing more about death and dying, trying to not only come to terms with my own mortality, but also the ways to approach the topic with others, people with whom I might need to have that discussion. I have long felt that death is an important and natural part of life, something to be at peace with and accept, but that does not make the sense of loss any less difficult.
A powerful community
In the lung cancer community, even though we may not know one another face to face, it is easy to begin feeling like you really know your fellow bloggers. While there are various gatherings that may bring many of them together, plenty of us are unable to travel for various reasons and exist to the rest solely as words on the screen. Still, this does not dull the voices, does not make the connection to one another’s experiences any less real or the inspiration derived from one another any less powerful or important. These are people we develop real connections to, deeply and meaningfully. These are voices that matter.
Creating a legacy of hope
And then, with some regularity, a voice is silenced.
As patients, we lose an estimated average of 433 people each day to lung cancer. These invariably include advocates and activists from among our ranks. The numbers matter and the silence can be deafening.
Those of us who remain to write about our experiences and share our stories continue to fight for more resources and to spread a better understanding of what lung cancer is. We strive to offer support and hope to other patients. And we continue each, working on our own legacy, with the hope that we will one and all outlive the disease we carry and die of something else, unrelated; we continue each, guided by our diverse dreams and goals but a shared sense of spirit, even as we know that among us some voices will continue on while others expire too soon.