“My doctor told me, ‘If we can keep someone alive for 5 years, we can keep them alive for 50.’”
Someone wrote that in a post in an online support group I belong to. It was about a year after I was diagnosed. And it was probably the most hopeful thing I have ever read.
In this column, my goal is to talk about the things that have given me hope over the 10 years as a follicular lymphoma patient. Probably the first thing I ever took hope in was that support group.
When I joined a group
Hope isn’t about certainty. It’s about possibility.
The few weeks after I was diagnosed was the darkest time of my life. I worried about my wife and kids, and I broke into tears every half hour or so. My wife suggested I join a support group.
There was a lymphoma support group at a hospital nearby, about 15 minutes away. Unfortunately, it met at 6 p.m. on Thursdays, so I decided not to do it. I was so on edge about everything. Even the thought of driving a short distance at rush hour just stressed me out. It was the opposite of what I needed.
So, I searched online for other support groups nearby and found an online group. That intrigued me.
Online support groups like this one aren’t really support groups the way a face-to-face group is. It’s a message board. People can write their thoughts or questions, and others will answer. You’re not in the same room with them, but it seems like no matter what time you’re online, there’s always someone there to respond.
I joined the online group, and I lurked for about a month. I just read what other people were saying and others’ answers. When I finally wrote something, it was to say thanks to everyone. This is part of my first post, and I think it sums up really well what makes a support group so great:
“Just reading your posts has been helpful, especially the NHL Stories thread. Heck, even reading your signatures, seeing your histories, has been helpful. As I’m sure you all know, it’s nice to know you’re not alone. You’d be amazed at how many times I came to the board over the last month to ask a question, and found that it had just been asked and answered in the last day or two.”
It’s amazing how when you’re that far down you can get hope just from someone’s signature — that little description of when they were diagnosed and what treatments they’ve had. Just seeing that someone with my disease had been around for five years was a lift.
I still use groups
I don’t write much on that group anymore, but I check in every day. I read about people I had met years ago and find hope when I see they’re still OK. I find information about clinical trials and new treatments. I read about other peoples’ experiences. And even after 10 years, someone will give me a new shot of hope, like that person I quoted at the beginning. I’ve read enough about follicular lymphoma treatments to know that what she said is true. But hearing someone else say it makes it seem even more real.
I’ve joined a few other online groups since then. Even Lymphoma News Today can be a kind of support group. Using the comments section, you can interact with columnists, ask questions, and share experiences.
So, whether they’re face-to-face or online, support groups, in whatever form, can be a huge help. The hope comes from connecting with others who have been through what you’ve been through.
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.