Your Data, Your Privacy, and Lympho Bob

I thought it might be a good idea to start the new year off by addressing the California Consumer Privacy Act, which went into effect a couple of days ago.

The CCPA addresses online privacy issues and gives internet users the right to know what information is being collected by a website owner. You can read more about it here. It's similar in many ways to the GDPR (General Data Protection Regulation) in Europe.

This blog is hosted by Google, which owns Blogger (which bought Blogspot a few years ago, which was the platform I used to start Lympho Bob in 2008). Google is likely collecting information about you. Chances are good that you use Google to search, or Gmail for your emails, or YouTube to watch videos, or some other Google-owned site. Google and other large websites are still working through how they will comply with the CCPA.

I don't have any control over what information, if any, that Google collects when you visit this blog. If data collection and privacy concern you, I encourage you to keep an eye on CCPA developments over the next few weeks and months and find out how you use it to feel safer online.

But as far as Lympho Bob is concerned, I do not collect any information about any of you.

I've been writing Lympho Bob for almost 12 years. I made the decision a long time ago to not use Blogger's advertising feature. I never will, and anyone who leaves comments with links to advertisements or for-profit websites get deleted and reported as spam.

I skip the ads for one big reason -- ads are created by using information about you that is collected online. When I was first diagnosed, internet advertising was fairly primitive. You'd search for something, and a related ad popped up immediately. So when I searched for cancer, I'd get ads (no lie) for funeral homes and life insurance. It was devastating. I didn't want to do that to anyone else, and risk having ad program put ads like that on my blog. Internet ads are more sophisticated these days. They use information from a bunch of sources, not just the site you are on, and put it all together to target ads specifically to you. But back then, I didn't want any information collected through my blog and used to try to sell you something.

The other privacy concern that comes with blogging is mailing lists or alerts. I know that lots of bloggers will include a link on their pages to have people sign up for alerts, so when I a new blog post is published, you'll hear about it right away. There are a few of you who have figured out on your own how to get an alert about this blog from Google, but I haven't put an alerts link on the page, or asked people to send an email address to be a part of an email list. I don't see any reason for it. I don't see myself ever sending out mass emails about anything.

So, like I said, Google might be collecting information about you, and I can't do anything about that. But as far as me collecting information? No. Honestly, I have no idea who most of you are -- even your names. And for those whose names I do know, it's only because you've told me, in a comment or in an email.

In some ways, I'd love to know more about some of you. And about once a week or so, I do get an email from one of you, asking for advice or input (I always remind you that I'm not a doctor), or just wanting someone to share your story with who you know will listen (and I'm always happy to do that).

But as much as I want to know more about you, I value your privacy even more. I want you to know that this is a place to get information and opinion, and maybe ask questions. And to do that anonymously if that's what you need. Or with a name -- if that's what you need. I'm happy to help either way. We all need to handle a cancer diagnosis in the way that makes most sense to us.

But I do have one request.

Sometimes people will email or comment on the blog and share some information about their diagnosis or treatment. I always try to respond, and to ask you to keep me (if it's an email) or all of us (if it's a comment) updated on your treatment or condition. If you get that response from me, I'm serious -- I really do want to know how you're doing. Many of you do send an update, but sometimes I get emails from people, and I write long responses back, and I never hear from the writer again. I hate that.

A few months ago, I heard from someone who was absolutely devastated about her diagnosis. I could hear and feel the pain in her words on the screen. I gave her what I thought was solid advice about how to maintain hope. I never heard back. It haunts me a little. I hope she's OK, that she found a good doctor, and that she has found some kind of peace. But I really wish I knew for sure.

I'm a Follicular Lymphoma patient, like you or someone you love. I have a pretty good idea of how you're feeling.I don't make any money off of this. Not a cent. This isn't a site that was set up to do that.  It was always a place to help other patients. I really do care about you. If you want to pay me something, respond when I ask. Let me know you're OK. Keep it anonymous, or use your name, or use a fake name. But let me know how you're doing. That's worth a million dollars to me.

And thank you all for reading. I'm looking forward to another good year for all of us.

Bob