Building a Support Network When You are a Single Person with Lung Cancer: An Interview with Karen Loss
In a recent conversation with lung cancer patient and advocate Karen Loss, she remarked that there was little discussion on patient support groups about how single people face lung cancer. Karen agreed to answer some questions about how she finds support without a defined caregiver.
Karen, please tell us about your connection to lung cancer.
I had no connection to lung cancer at all until, after nearly two years of on-again, off-again searching for answers to my recurrent “chest attacks” that everyone seemed to think was potentially related to my gall bladder, I was finally sent for a CT scan that showed masses in my right lung and liver. A subsequent needle biopsy in late November of 2012 proved conclusively that I had metastatic lung cancer. I’ve been battling it ever since then and have chosen to become a patient spokesman and advocate as well.
You are both single and childless, which could pose a big challenge with building a support network when our society is built around nuclear families. Who do you rely on for support?
Literally, from the day I was diagnosed, I made the conscious decision to share my journey with my entire list of friends and family, people with whom I was in email contact. That initially numbered well over 100 people and has grown to about 250 people whom I regularly communicate with regarding my medical circumstances. Some of these people are local and work with me or attend my church, some are family, some are friends in distant places, and now many are also fellow lung cancer patients. I live alone, so I knew it would be up to me to create any support system I might want or need.
You are still working, which is very understandable; you don’t have a partner with whom you can share basic living expenses. Are your employer and co-workers part of your support network?
I am very grateful to friends at work who have supported me emotionally during this journey and to management who have given me the leeway necessary to attend myriad medical appointments. They have also been understanding when I need to come in late or otherwise take a break when side effects of some treatments have overcome me. I recognize how lucky I am to be employed by a company that builds flexibility into its work requirements and even allows me to work from home on days when this may be my only reasonable alternative.
As to the single income situation, this is something that can potentially cause a good deal of stress. It’s hard enough in this day and age to pay the bills on a single income, but when one adds significant deductibles, drug expenses and other bills related to cancer treatment, well, it can be daunting. Only recently, I contemplated the possibility of going on disability, at least for a time, while I deal with side effects of a difficult treatment regimen, but have determined that it would impact my investment accounts in ways I’m trying to avoid for as long as possible. So, I have opted to tough it out and keep working at figuring out other alternatives to address those nasty side effect issues.
Are you a member of a church? What role does your faith play in your overall support?
Yes, I attend a United Methodist church regularly and feel that my faith ultimately sustains me through this entire experience. It allows me to feel no long-term fear with regard to the fact that my disease is considered a terminal condition because I believe in eternal life…a time when all pain and sickness will be gone and I will live in a new realm of joy with my Lord.
Do you have contingency plans for getting help if you can no longer live independently?
One of my sisters who lives in near proximity to me has agreed to become my caregiver, should that time come when I can no longer care for myself unaided. As a single, independent person, I know this will be difficult for me to deal with, but it is good to know that these plans, however preliminary they may be at this point, are in place.
Have you found ways to use your solitary time that strengthen your emotional well-being? How much do you rely on distractions, such as television?
Well, in all honesty, I watch far too much TV and I websurf entirely too much also. This is one of the drawbacks of being not only single, but an introvert by nature. I really want to get out and be more physically active with such pursuits as hiking, golf and tennis, but I rarely have anyone to do these things with, so I tend to take the easy way out and relax in front of the TV. I read quite a lot, both fiction and articles, mostly about lung cancer. Oh, and whenever I get the chance, I cheer on the Washington Nationals baseball team. Go Nats!
You can read the remainder of Anita’s interview with Karen here.