Tuesday, March 5, 2013

Fellow bloggers

My fellow blogger and Dana-Farber patient Tara has a great phrase when it comes to all the information about cancer out there... wherever there is. She calls it her cancer cocoon.

I like that phrase.

Sometimes the information is good, sometimes it's bad, and sometimes it's downright scary. So much so that you feel like you need a protective little cocoon to shield you from what you can't handle. That's how I felt a lot of the time during my first year post diagnosis.

Stacy would dig around online and find out information about lymphoma and follicular lymphoma, but I never looked. I'd occasionally run into some info naturally (I do work at Dana-Farber after all) but even when I started treatment, when maybe it would have been good to know more about CHOP vs. Bendamustine and alternative treatments and all that stuff, I still stayed nestled in my little cocoon, putting trust in my care team (and really the entire Lymphoma team at Dana-Farber, as they all review all the cases -- weird to think of myself as a case) to know what to do and to present the options to me.

Now, after a year plus of watching and waiting, six months of treatment, and 103 blog posts, I'm coming out of my cocoon. Part is the natural evolution of processing my diagnosis; part of it is blogging; and part of it is the small community of fellow bloggers and patients I've met, particularly in the last few months.

 I want to introduce a few of the newer ones I've been following.

Total Recovery. Full Stop. Checkmate. I Win. - This is Tara's blog, mentioned above. I'd follow this just for the title but there's more to it than that of course. I love the energy and spirit of this blog. Tara is not a lymphoma patient but as a comparison of her posts and mine will reveal, some issues that cancer patients face are universal across different types of cancer.

Lympho Bob - I didn't know what to expect from a blogger/blog called Lympho Bob, but as I found out, it's a great source of updated information about follicular lymphoma from a lymphoma patient. Regular, frequent posts for more than five years, it's a great source of lymphoma info.

Blessings in Disguise - Rachel is also a follicular lymphoma patient and a dedicated blogger whose posts are imbued with messages of faith, along with  information and even some great recipes and food photography! I may not share the same faith as her, but I do share a lot of her sentiments.

My Lymphoma Journey - Andrew is neither new to me or new to the blogging world but I had to include him here because I've been following since the very early days of my blog. He is a post stem-cell transplant patient, blogger and now book author who shares insights and information on lymphoma, cancer, healthcare, and even movies.

I would guess that as I come more out of my cancer cocoon, I'll find more fellow bloggers, and through events like the upcoming lymphoma conference, even a few more fellow follicular patients.