The 2017 HOPE/Cope Summit was drawing to an end. I got to see so many people I’ve come to know through Facebook. Most are true survivors, meaning that they have lung cancer and are currently in treatments. They.Are.Here!  A testament that people can survive after a lung cancer diagnosis. That goes back to what Chris Draft said about what should be a part of our new message: we need survivors to prove that the other four steps (prevention, early detection, research and treatment) are working. But surviving lung cancer doesn’t just mean that you are subsisting. My friends have so much more on their plates. Questions like “How long will this treatment work?”“What happens when it doesn’t?”What are the next steps or treatment options?”“When do I say enough is enough?” Then there are the family questions: “How do I manage daily life if I can’t tolerate the treatment?” “Who will cook, clean, take care of the house?” And it gets even more complicated if there are young children: “Who will take care of them?” “How do I talk to them?” “How much do I share with them?” Then, let’s not forget the practical questions: “When do I make a will?” “When do I go into palliative care?” “When do I get “my affairs” in order?” 

Is this what making the most of your survivorship entails? I don’t know. I can tell you from personal experience as Jillian’s caregiver and mom, we talked about her treatments—and what she wanted to do when she felt like crap.  And how long did she want to continue with treatments? Most of the time these talks were done in passing conversations. She was—and we were—frustrated. As I said before, Jillian never considered herself a survivor.  So then, if she wasn’t a survivor, can I be one? How do we make the most of our determination to go on?

What Jillian was, was a fighter—she fought every day, every hiccup (something that is not related to the initial diagnosis), and every piece of bad and disappointing news. Through it all, she somehow always managed to smile. During her illness, I fought too—for one more day with her, for more conversations, for hope that the trial she was on would be the magic pill…In her passing, you could say we survived—but not wholly intact. The scars are reflected in our eyes; we have holes in our hearts and a void within that defies explanation.  

So I guess I am a survivor.  My survivorship started when we sat in our rabbi’s office right after learning that Jillian had some form of “cancer” and heard that we had begun The Grieving Process. Jillian hadn’t even started what I crossed my fingers for, fought for: life-extending treatment.  Fourteen months later, now facing life without Jillian, I started Jillian’s Dream.  I wanted to raise awareness about what I learned lung cancer is and isn’t; to fund this terrible disease that receives so little funding; and, to become a voice for all that to change. Surviving Jillian’s lung cancer and, even more importantly, Jillian’s passing, made me come face-to-face with that which I struggle most: how to return to the person I was? Do the things I should do?  Be the mom I was to our sons without everything being about Jillian’s Dream? Find me again? How do I live after Jillian lost her life to cancer?

By the end of the conference, I had an aha moment. I was in a class alone:  I no longer had someone to care for, and, obviously, I am not a patient. I’m an anomaly, because I’m no longer a caregiver or have someone affected by lung cancer. So what is my purpose/reason for being a part of this conference? While I remain grateful for the opportunities to speak in a public forum about how my grief propelled me to create Jillian’s Dream, how I’ve raised funds for research, and how I continue to reach out through social media to advocate for patients and educate caregivers, I felt like that fifth wheel—the unattached member in a group—struggling with living after losing my daughter to cancer. And then it hit me: being an advocate gives me the opportunities to make the most of my survivorship, thus giving me a life to live well.

Losing Jillian leaves me with an emptiness.  I’m not angry or frustrated at lung cancer anymore, but I am deeply saddened that my Sweet Pea is not here. And although I still find it confusing how I fit into the lung cancer world I’ve become a part of, I will continue to figure out what so many of my lung cancer patient friends have learned:  survival is an ongoing battle with a landscape of immensely changing horizons.

I leave you with this saying by Reinhold Niebuhr, which perhaps is the way to make the most of my survivorship:

Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

I grow stronger. Than. Lung. Cancer….

Ros Miller
President/founder Jillian’sDream.org
Follow Jillian’s Dream on Facebook

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.