Taking a Break from Follicular Lymphoma

An anonymous reader posted a comment yesterday on my last post (about Immunotherapies), and I started to respond to it as a comment, but I decided it would be better to put it here, where it might be seen more easily.

The comment said this:

All excellent news! Thank you for keeping us informed! I am approaching my one year diagnosis anniversary, and had a complete response to B&R seven months ago. I'm on the fence about staying informed. On one hand I'd like to put all of this in the rear view. But on the other hand, it's the kind of baggage that keeps hanging on... At any rate, thank you for your efforts! 

First of all, congratulations on the Complete Response! That's awesome, and even more awesome that it is a durable response, and continues to last. I hope it goes on for a long time.

Second, and just as important -- if you need a break, then take it.

This blog is a funny thing (from the perspective of the person who writes it).

I've been doing this for almost 10 years now, and I noticed a distinct pattern a long time ago.

There are people who discover the blog, usually soon after they were diagnosed. And based on what they say in their comments and private emails to me, they spent a few (or more than a few) hours reading the blog, going back a few years, learning new things, and getting into Follicular Lymphoma through my eyes, as someone who lived it. (Some of you might recognize yourselves in there.....)

Very often, those people will continue to read -- eager for every new post. And they'll comment on every one, or send me another email. And I love to hear from them. And then they'll let me know that a treatment worked, and I'll celebrate with them. And then they'll comment some more.

And then, after a while -- 6 months, a year -- the comments and emails will become more infrequent. And then they'll stop, and I'll never hear from them again. Over 10 years, that's happened a whole lot of times.

And I'm fine with that.

The blog is run through Blogger, which is owned by Google. I really like the platform. One of the nice features is its analytics -- the statistics that Google provides to me about readers. Google doesn't tell me anything about individual readers, but I do know things like how many people have visited each day or week, and what countries readers are from (there are a lot -- I've had readers from over 70 different countries in the last year. As I'm writing this, there are people reading the blog from the U.S., Brazil, and France. How cool is that?!).

And I can see patterns in the analytics, too. I will go from a large number of readers, to a slow decline over a few months, so that I have about half as many monthly readers as I once had.

I can put things together. Readership goes up and down, because that mirrors the way Follicular Lymphoma works. People get diagnosed, and they get hungry for information. They get a Complete Response, and they take a break. That's how it works.

And I'm fine with that.

One of the reasons I've never had advertising on the site is that I don't want to be tempted to have a few dollars be the motivation for doing this. If I relied on making money from the blog, I would never say what I'm about to say:

If you need to stop reading, then stop reading. My great hope is that I can give people something that they need. If you don't need it any more -- or if getting it is making you feel worse -- then stop reading.

That makes me a lousy social media manager. But that's not what I am. I'm a patient, like most of you, and I'd want someone to tell me the same thing -- do what you need to do to make yourself happy.

I say it a lot, and I'll say it yet again -- Follicular Lymphoma is an emotional disease as much as it is a physical one. Take a break and heal that part of yourself.

Anonymous reader -- Stop reading if you need to.

When you're ready, come back. I'll still be here.

I promise.

Good luck with the remission. I sincerely hope you never need to be informed about Follicular Lymphoma ever again.