The first Awareness Day
November–not April–is the cruelest month–at least for me. It is the month Jane went into the hospital for the last time. It is the month of three of the four most vicious carcinoid attacks. It is the month of her last birthday, our last Thanksgiving, and of our last best hopes.
We still have no cure–but the landscape is changing.
And it is the month that most forces me to interact with the carcinoid cancer that killed her. As Jane and I prepared for our last trip to Dana-Farber, NET cancer advocates were “celebrating” the first ever Worldwide NET Cancer Awareness Day. We knew nothing of it at the time. We were too immersed in Jane’s own daily struggle with the disease to be bothered with any piece of information that did not promise some immediate aid–some immediate bit of knowledge that would give us some glimmer of hope in the long battle we saw ahead. We were–though we did not know it at the time–at a critical juncture. The next few days would decide everything, though we would not know that for another month.
Print Awareness
Jane was 11 months gone when the next NET Cancer Awareness Day arrived. We published an entire package of stories about NET cancer patients, doctors and caregivers. We hoped for a broad audience. I sent emails to every daily newspaper and every wire service in the country announcing its availability. Four papers–two local dailies, a local weekly and a local monthly printed any of it. It made me painfully aware how difficult the awareness side of the fight was going to be. We did catch one break that fall when the New York Times ran a piece on NET cancer in their health section. I’m not sure we had anything to do with that–but I like to hope.
I live with NET cancer every day.
The third NET Cancer Awareness Day was a train wreck from my perspective. We did the groundwork for a number of stories, as we had done the year before. But nearly all of them collapsed as sources evaporated. And after the failure of the previous year at getting things published outside our own backyard, it was hard to get overly excited about the prospects of the second effort.
Video and Social Media Awareness
This year, we took a different tack: I made a trip to Dana-Farber to spend a day doing interviews in late October and put together about 30 minutes of video to form the cornerstone of a social media event I called the NET Cancer Social Mediathon. We drew a peak audience of about 10,000 between Facebook, Google+, YouTube, and this website. I wanted more than that–but expected far less. We didn’t raise any money, but we made a lot of people aware of the disease who had not been before. Some wrote me afterward to tell me they were going in to get tested. Even one person getting tested would have made the entire enterprise worthwhile.
We hoped for a broad audience.
I live with NET cancer every day. I don’t have it, but I deal with it. I spend some imd every day reading the latest research, talking with people who have the disease or people doing research on it or people trying to raise money for it. I draft letters and do mailings. And I miss Jane terribly and never forget what it was that took her from me.
The Price of Awareness
But the month of November increases both the number and the intensity of all those efforts. The rest of the year it is never far from my thoughts. But in November it feels like that is all I do–all I think about.
November–not April–is the cruelest month…
In eight days, it will be three years since Jane died. We still have no cure–but the landscape is changing. We have more resources. We have bought some people some more time with better quality of life. The day will come. The day will come.
