A Surprise from International Lung Cancer Survivorship Conference

I attended LUNGevity’s International Lung Cancer Survivorship Conference (ILCSC) in Washington DC from April 25-28, 2019. It was the first time I attended a conference specifically for lung cancer patients and caregivers. It was composed of 3 simultaneous summits: the HOPE Summit for patients, the COPE Summit for caregivers, and the Survivorship Summit for advocates and survivors. There were more than 400 people, most were lung cancer patients and caregivers, some were doctors and scientists.

A unique conference

It was such a surprising conference from many perspectives -- conference content, social arrangement, and especially the conference atmosphere. I have quite a bit of experience in organizing conferences in my previous career as a professor, but the ILCSC went beyond my expectations. At ordinary conferences, it's rare that I found myself surprised, but ILCSC truly shocked me.

From the moment I arrived, I felt at home

I usually treat people politely but keep myself distanced. Quite often I deal with people several times, but I rarely remember their names. Since joining Facebook and connecting with lung cancer friends, I find myself more drawn towards the group. People are extremely friendly. Some even called us as “cancer sisters”. To me, it’s a bit cheesy but nice.

I found it was very helpful to have our pictures on Facebook. When we finally met each other in person, we were like long-time friends and hugged each other very tightly. To me, it was a very good feeling. People were very comfortable to talk about their own lung cancers. There was no negative comparison and no judgment. For the first time, I felt so relaxed and comfortable with people. I was with people like me. I could be myself without feeling like I was different from others all because of my cancer.

It didn’t matter you were EGFR, ALK or ROS1, or you had no targeted genes, you always found somebody with the same diagnosis and for a longer time. We were all lung cancer patients. That feeling of being so close with somebody was what I never felt before and longed to have.

Looking through the eyes of a caregiver

As soon as we got to the Marriot Hotel in Washington DC, the first thing that caught my attention was that it was not difficult to tell the caregivers from the patients. For patients, we were happy, rejoiced, and celebratory, but the person next to patients were often quiet and heavy-hearted. It was very obvious. I asked my husband why the caregivers were so miserable? I knew caregivers were working hard to take care of patients, kids, home, work, and themselves that it was not easy. But I thought that we, the patients, were the ones with a limited time left in the world. Compared to caregivers, we were the ones being robbed. I think I was incorrect.

The 2nd day, I encouraged my husband to go to Cope Summit for caregivers mainly because I wanted to be with the other patients. After one session, my husband was excitedly telling me about his session and how eye-opening it was. For the first time, he heard other caregivers talking about their physical and emotional suffering. Those caregivers talked about saying “no” to the patients and how they shouldn’t feel guilty doing so. They discussed the importance of venting and taking time off for themselves. It was the first time for my husband to know that he was not alone. It was the first time I truly felt the challenges that the caregivers were going through.

I think the advice the caregivers gave for what they “should or should not do” is not unreasonable, but it’s the self-imposed guilt that makes doing those things unbearable for caregivers. I want caregivers to be relaxed and not exhausted. The average life span for lung cancer patients is significantly longer than before. I think that we should pay more attention to the caregivers’ well being and prevent burnout.

Celebrating friendship and strength

Attending the ILCSC was a truly amazing experience. It brought the patients, caregivers, survivors, and doctors together to discuss the same topic -- lung cancer. The closeness between the patients is unbelievable, but it’s the caregivers’ strength and bravery that truly amazed me.