By Lisa Machado
People often ask me if I ever get tired of talking about cancer. Does being so involved in this world ever get me down? A young woman with CML even went so far as to say, “Isn’t it enough to have cancer? Why on earth would anyone choose to make it such a big part of their life?”
To be sure, it’s one thing to spend your days writing and talking about cancer when you don’t have it. But when you live with it, everything takes on a whole other meaning.
A few weeks ago, I spoke on a panel with a lung cancer survivor and two women with metastatic cancer. To say that it was an amazing day would be an understatement. The few hours I spent with these incredible people were yet another lesson in courage, optimism and grace. It was a also a reminder of how far we have come in terms of cancer research – we were all very conscious that had it been 10 years ago, we probably would not have been sitting there.
It was not long after this that I received a note through Facebook from an old boyfriend. We had dated for five years until he decided that, at 25, he needed to see other people. He moved to New York with his family, and I heard from him just once out of the blue on September 11, when he emailed me to make sure that I was okay.
His Facebook message also came out of the blue. He said that he’d been following what I’d been doing with the CML Network, and that he was sorry that I had to deal with a leukemia diagnosis. Then he said that he’d been recently diagnosed with pancreatic cancer. He wasn’t worried, he said, because he had spent the last bunch of years discovering religion. He didn’t believe that “God had brought him this far only to let him die.”
I know the stats on pancreatic cancer. They’re not good. When I told a doctor friend about it, she simply said, “I’m sorry.” Still, he was so sure that he’d be the one who would make it that I believed him. He said that he had a great doctor and that his pastor joined him at every appointment. Who could argue with that? He said that he’d get in touch once his treatment was done and we’d catch up.
A month later I saw a note about his funeral on his brother’s Facebook page.
So no, I don’t get tired of talking about cancer. I don’t get tired of sharing my experiences, working through the emotions of a cancer diagnosis with patients, providing education so that people can manage their health better, helping patients navigate the healthcare system, or working with drug companies and doctors so they can better understand the patient experience.
What I am tired of is the many stories that end badly. I am tired of the pain and struggle that so many people live with because of cancer. I am tired of watching patients and their families desperately cling to hope because that’s all they have.
At a recent meeting examining patient experiences in oncology, a doctor stood up and simply said, “We need to do better.” And he’s right. We need more support for patients and those who care for them. We need to improve access to clinical trial drugs so that every person with cancer has a fighting chance. We need to figure out the inequalities of drug funding so no one has to beg for the medication that could save their lives. And we need to support timely research so that a cure for this disease that waits for no one can be found.
The time is now.
