Talking to Other FL Patients

I had the chance to talk with some other Follicular Lymphoma patients today. I won't get into details of the event, to protect everyone's privacy. But we had a chance to talk about circumstances and experience and give our opinion on some relevant things.

Two things that I came away with after the meeting.

First, I always feel a little glow when I'm in a situation like this. It's strange -- as much as I hate to revisit some of the worst parts of my cancer experience, it also feels good to hear that someone else has felt or experienced the same thing. Cancer can be a lonely experience, and there's a kind of spiritual connection between people who have heard those words, "You have cancer." I wish there were other ways to feel that connection with the nice people I spoke with today, but the connection is there anyway.

At the same time, it's also hard to not feel something else -- guilt or jealousy, I suppose, depending on the circumstances. One of the people I talked to has been through a couple of rounds of aggressive treatment and is still feeling the effects. Another has been watching and waiting for several years, and senses that treatment might be necessary very soon. No FL situation is good, though it's hard not to compare your own circumstances with someone else's and feel good or bad about it.

I think guilt is a very real emotion for a lot of us. I've written about this before, and I think it happens even more these days as there are more places for us to connect with other patients online and compare our experiences. Some folks really do have a tough time. I've been lucky, I know, to have had a pretty stable disease after all these years. It's not the path that was presented to me when I was first diagnosed all those years ago. Back then, I was told to expect to have multiple treatments, and to have the disease come back sooner and more aggressively than before. It hasn't.

And I do feel some guilt about that every now and then. Not so much because of what my experience is. More because I am sometimes considered to be a representative of the larger FL community. I'm always listening, and I have a good sense of what other FL patients have gone through and are feeling now. But sometimes when I talk to another patient who has been through a lot more than me, I become to same fool that doesn't know what to say to someone with cancer, and I say the wrong thing. I didn't today, than goodness. But it happens. With a disease that presents itself in such a wide variety of ways, it's impossible to find someone whose experience is the exact same as ours. There's always someone worse off, and always someone better off.

And so -- guilt or jealousy. 

I hope you're not feeling that way yourselves, but if you are, know you aren't alone. (There -- that good feeling of connecting with other patients with FL.)

So it's been an emotional day. Believe it or not, as I feel guilt for having it better than some, I am actually leaving soon to head to a shelter for the homeless to cook dinner for 100 people. My wife has been doing it for about 12 years, and I've joined her for the last year or so. Another reminder that I am fortunate. But I also get to hear how much they love my macaroni and cheese, which is always a hit. 

I wasn't going to write about this, but it's Lymphoma Awareness Month, and the Lymphoma Coalition wants us to talk about how we're feeling. So now you know what's on my mind.

Have a great day, everyone. Stay well.