Jillian

A good friend asked if I would provide insight after the 2017 HOPE Summit this past May. I was energized and invigorated to write my takeaways. Then I got home and hit a wall. It’s taken me some time to collect my thoughts about my experience and impressions.

As a guest panelist during the COPE portion of the HOPE Summit, I was honored that my voice was going to be heard by a new group of caregivers, many who are going through what I did with Jillian. Sharing the stage with my good friend Danielle and new friend Richard, we came at the topics from different positions: Danielle as the caregiver to her parent, Richard as caregiver to his wife, and me as the caregiver to a child.

Our topics were treatment and options, communicating with the medical team, practical issues and lastly, relationship issues. When Jillian was diagnosed one of the first gifts I got from her was a pen—a purple pen. She knew that I would be her note-taker from her first appointment until her last. I would jot down how she felt physically, aches, pains, hiccups and questions I had for her medical team. That was her way of saying, “Mom, I need you there to be my ears and memory,” and including me, giving me permission to be a part of her treatment. 

Communicating with our loved ones seemed to run the gamut of talking too much, telling too much, broaching subjects too early or not at all. One caregiver spoke about the difficult conversation he had with his spouse about end of life, while another asked how does she tell her very young children the seriousness of Dad’s disease? When, at what point during treatments do we have those conversations? As I listened, I tried to remember…and realized that those were conversations we had. We used the “wrong” words, picked the “wrong” time, because some conversations just never happen and perhaps they didn’t have to. You know your loved one and what they can and can’t, will or won’t, talk about. And if you are open enough, you know that perhaps you don’t have to say anything.  There really isn’t a right or wrong word or time.  You just have to be there.  

We were lucky that Jillian had excellent health insurance and participated in a clinical trial so the practicality and financial aspects of her treatment were minimal. She moved back home for treatment but still had bills to pay, which she did from her PTO and then short-term/long-term disability. But for many, the practical aspects of having to live daily with a terminal disease are daunting.

Lastly, we talked about relationship issues—a sticky wicket. How, as a child caregiver to a parent, do you balance the parent/child relationship? As a spouse, how do you not become a nag and expect them to be better, do more, help YOU? As the parent of a child—how do you deal with their lost dreams, lost future? As a caregiver, how do we get family to be present? First, I think you have to accept that our loved one has a lot on their plate—don’t expect things to be normal. That went out the window with the words “lung cancer.” Second, WE have to let them be: be themselves, be independent, and be in charge as much or as little as they want. Like anyone in any kind of relationship, you have to listen.

Jillian

All that was just one session on day 1 before lunch, and our keynote address by my friend and fellow advocate, Chris Draft, took center stage. Talk about showstopper, call to action, give me the ball and let me score the touchdown moment…yes! Since the passing of the National Cancer Act, we have been trying to crack this cancer mystery.  For over 40 years, we told the public that lung cancer was directly related to smoking and that by preventing that we could adequately treat this disease. We were so wrong. As with any disease, you want prevention—how to stop it from infecting people, how to stop it’s spread, how to eventually eradicate it.  Cancer, though, is different. Every cancer is different as are the people who are diagnosed. For lung cancer to change, we had to recognize that our message was incomplete. To change that, we had to change people’s minds and perceptions in dealing with the elephant in the room. The 21st Century message to doubling survival, making lung cancer chronic and one day curable is this:

Step 1: Prevention
Step 2: Early diagnosis
Step 3: Treatments
Step 4: Research
Step 5: Survivorship 

Jillian

Like all diseases, lung cancer is a people’s disease. And they have names, faces and stories. The statistics today haven’t changed much since 1972. Lung cancer remains the most misunderstood, deadliest and least funded. Survival rates are approximately 17 percent for 5 years. In the past year, I’ve lost friends who fought so hard for every day, made a difference with their stories, and left many loved ones behind. Let’s keep the conversation going.  Listen and share our new message. Get to know our lung cancer community and watch us change the face of lung cancer

Together we are stronger than lung cancer!

Ros Miller
President, Jillian’s Dream
Lung Cancer Advocate

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