Caregiver is a funny term to me. There have been times in this process I’ve felt like one, but most of the time, I haven’t needed to take that role. My husband, who is an advanced stage lung cancer survivor, doesn’t need care. He isn’t bedbound or sickly; he’s out biking and golfing on the weekends.
When we found out about my husband’s diagnosis in September 2019, we felt like the rug was pulled out from under us. Those first couple of months were so surreal. There was a lot of crying, some difficulty eating, and a few sleepless nights. In the moment, you don’t think you’re processing it well, but I think we did better than expected.
You don’t know how you will react to a situation like this until you are in it. Both my husband and I are highly educated people, but we decided to take a hands-off approach. We didn’t do much research. We knew he had advanced stage disease, but when they asked us if we wanted to know the exact stage and prognosis, we said no. What did it matter? Everyone’s journey is different and we didn’t want their initial assessment to be some sort of self-fulfilling prophecy that caused us to lose hope. As they say, ignorance is bliss.
At first, my husband was put on a drug for his RET mutation, which he had an excellent response to. After about 9 months, though, he had more growth, which caused us to find out about a second mutation, MET. He switched to a new RET drug while simultaneously taking a MET drug.
This is when things went really south. He had high liver toxicity and blood pressure regulation issue. He lost 30 pounds. His body just couldn’t handle the two drugs together. They took him off it for about six weeks before starting chemotherapy, which he has had a phenomenal response. Now, whenever we see his doctors, they comment that they don’t see any signs of cancer.
We decided very early on that we did not want to share the news of my husband’s diagnosis with very many people. We live in a small town and didn’t want it to define us. We decided who we would tell and when.
You don’t owe anyone any explanation. My therapist put it best: What can the person you are considering telling do for you? For us, for the most part, nothing. We didn’t need meals. What we needed were spaces and places people didn’t know about it so we could just live. I didn’t want to feel obligated to talk about something difficult in my life with practical strangers, like our real estate agent or bank teller.
People know my husband is sick, but most people are very respectful about not talking about it or asking prying questions. There may come a time that we need to tell more people because we need more support, at which point we’ll need to reassess. But we aren’t there right now.
Of course, we did tell family and close friends. My daughter and my husband’s mother were who we told first, though not right away. My husband’s mother was 95 and my daughter was a sophomore in college when we found out about my husband’s cancer. We were concerned about how they’d handle the news and actually delayed telling them until we had more information. It was challenging to talk to them, particularly my daughter, and pretend that everything was fine when it really wasn’t.
When we finally told her, my daughter handled it so much better than we expected. She is so much more resilient than we knew. I think you can say that about most people. We are all stronger than we realize until something like this tests us.
If you have to tell your kids something like this, whether they are still children or adults, I would recommend you pace yourself. Don’t spill it out all at once. Wait for questions. They will ask what they want to know and what they’re prepared to hear.
Unfortunately, we don’t have any other family nearby. My closest relative lives in another city more than 6 hours away. This is difficult, particularly during COVID. However, I am very lucky to have tremendously supportive, wonderful friends who I’ve come to rely on. They ask what I need, and I tell them I just need them to text me, and pray for us. Even if I don’t respond, it means so much to know someone is thinking of me and us. This journey can make you feel so alone and isolated, and this support makes all the difference.
Other things that I have found helpful are taking time for myself, practicing yoga and meditation, prayer, and taking walks alone. Self-care sounds so trite, but it is so necessary.
I also found building a community of people who have faced similar situations is very valuable. I joined LUNGevity’s monthly Caregiver Meetup (which is the fourth Thursday of every month) and find it to be very helpful. Hearing others’ stories – even if it’s about a different kind of cancer – helps you feel less alone. I don’t compare, even if it’s a similar diagnosis, but rather listen and learn from how they coped.
I am fortunate that my husband is doing well. I stay hopeful that he will continue to do well. I believe in science. I believe that my husband is getting excellent care. I believe in his medical team, and I believe we are doing everything we can. I can’t control the future, but I have hope in the present. I continue to pray for miracles and for the ability to cope.
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