Cancer and loneliness are besties. They bond over the fact that each cancer journey is unique to the patient. They can gossip about how different we are and how cancer impacts us. The rumors are true; our treatment options, treatment plans, socioeconomic impact, family impact, etc., will all differ. The choices we have to make may seem the same, but the reasoning behind them is unique. Having to be the ultimate decision-maker may sound powerful, but it can also be isolating. Cancer is lonely because no one will know precisely what you are going through at a time when you need the most understanding, compassion, and empathy.
Cancer was a large domino that set off a chain reaction that caused a degree of loneliness that is hard to put into words. A series of unfortunate events occurred after my initial diagnosis; my marriage broke up, I was laid off from my job, I lost my health insurance, and I lost my home all at the same time. I had to start life over with the big “C” by myself… My family and friends were/are supportive, but no one knows the heartbreak and pain these events caused. The grief alone made me feel like I was wandering around with a capital “L” on my forehead.
I was diagnosed with a chronic rare terminal cancer that is typically found in the elderly, and I was diagnosed at 31 years old. Only one doctor in my state had any actual experience, and only one clinic in the United States specializes in my cancer. Whenever I access medical services, I educate the doctors on my type of cancer; it isn’t very reassuring and feels isolating. I didn’t intend to get a medical degree…nor did I want one.
As my cancer journey began and I started to educate myself, I learned how rare my cancer was. I had contacted all the cancer agencies/nonprofits I could find looking for a peer; I was desperate to find a connection. Facebook was just in the beginning stages, and the other social media platforms didn’t exist. The organizations kept replying that they didn’t know anyone with my type of cancer. After a couple of years, I gave up looking for peers and realized I was even more on my own than I thought. I was exhausted and so depressed.
With chronic cancer, there is no cure; it’s terminal, and all you can do is slow it down by going through treatment. This is even rare among fellow cancer patients. The loneliness points seemed stacked against me. As I have said before, “Go big or go home.”
I was taking oral chemotherapy to slow down the progression of my cancer, losing my hair, managing side effects, and trying to figure out my “new” life while my peers were focusing on starting families and buying their forever homes. I was lonely because I didn’t feel like I had anything in common with anyone. Such an isolating experience. This feeling has continued as my peers and family experience standard life stuff. I grieve those missed opportunities, like Mother’s Day, careers, family vacations, planning birthday parties, etc. It’s been 14 years of battling cancer and having to hang out with her bestie loneliness.
COVID. The pandemic and chronic cancer don’t mix; COVID has added a new layer of loneliness and isolation. Sounds so inviting, doesn’t it?! During the first two years of COVID, I was on strict lockdown. I learned how to work remotely, have groceries delivered, stay away from crowds (including my large beautiful family), and wear a mask when I did go anywhere indoors. Even my medical appointments became virtual. My entire life was through Zoom. At the beginning of COVID, I had NO idea what Zoom was; now I am a pro! Sadly, almost three years later, I still live with restrictions that cause isolation and loneliness. I have to avoid large crowds, stay away from anyone showing cold symptoms (during cold and flu season, this has been Hell), mask any time while indoors, and avoid places like the grocery store during busy times. The people I hang out with must be vaccinated, and I must insist on lots of handwashing. I am VERY blessed that my family and friends are understanding and always tell me if they are sick or have been exposed. These precautions are my new routine, but I hate them. Spontaneity doesn’t exist for me anymore.
Fast forward 14 years, and I have transitioned into a new stage of life. I still haven’t found a peer, still feel lonely at times, and continue to experience life at a different pace than others. Recently I had to stop working due to my cancer and go on disability. I have transitioned to palliative care and have maybe a few years to live. This is isolating and lonely. I am going to be 45 in April. Most 45-year-olds aren’t planning funerals or finalizing wills. For one-third of my life, I have had cancer. My friend’s kids are going to college. My friends are traveling and focusing on careers. I am planning my death and how to enjoy the rest of my life.
There is a light at the end of the tunnel, no pun intended. With social media being so vast and expansive, I am beginning to find peers who have some similarities to my journey. Every day I hope to continue fostering relationships and building connections so there is less loneliness and more community. Some might think, “Dear God, why would you ever share such a depressing story.” I share my story because I want you to know you aren’t alone. I want you to know no one will be able to know EXACTLY what you are going through, but you can find peers who have an idea. Keep reaching out to others and if you are too tired or feel like giving up, ask someone to help you. Share your story; you never know who else might be feeling like you and listening.