Finding My ‘Big Lymphoma Family’

Cancer has a way of isolating us. Friends and family can be supportive, but sometimes they don’t understand what you’re going through. I have found that it helps to think of myself as one part of a larger community.

In my 11-plus years as a follicular lymphoma patient, I’ve managed to form a network of people who can identify with my experience. Some are fellow members of support groups where those of us with follicular lymphoma share our fears and hopes. There’s nothing like the feeling of telling your story to someone who gets it.

Others are advocates for various types of cancer. They may not be lymphoma patients, but they’ve heard a doctor say, “You have cancer.” The details don’t matter — it can be lymphoma, breast cancer, or lung cancer — we’ve all heard those words which have changed our lives forever.

I consider all of these people to be part of my “Big Lymphoma Family.” I believe that, if I needed to, I could go online at any hour and find someone to listen to me.

But that’s the funny thing about this family: I haven’t met many of them — we’ve mostly communicated online. I don’t even know all their real names; some I recognize only by their social media profiles or avatars.

I recently started thinking about how my Big Lymphoma Family exists in the physical realm. I’ve realized that I’d been unaware of how some people have helped me in the real world.

I once chatted with a parent while we waited for our kids to be dismissed from school. It turned out that her husband was head of the pathology office at the hospital where my biopsy had been sent. I realized there was a good chance that he had been the one who officially diagnosed me with follicular lymphoma.

Another parent asked my wife how I was handling my treatment. As she described what I was going through and my medications, including Rituxan (rituximab), his face lit up. He was a pharmacist at the hospital, and said to her, “Rituxan. I mix that stuff!” He could have prepared my medications.

Another time, I noticed a new nurse at the oncologist’s office who looked familiar. It turned out that she was a parent of one of my son’s basketball teammates. She was filling in for a nurse who was out sick. She usually worked weekends, which is why I only saw her occasionally at games.

As the saying goes, “We can choose our friends, but not our family.” I think that’s only partially true of my Big Lymphoma Family. Some people come into our lives and make a difference, and we barely know that they’ve been there.

And sometimes we make the choice.

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Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.