The Leukemia & Lymphoma Society Blog

The Leukemia & Lymphoma Society Blog

2 Posts tagged with the support_groups tag

We’re excited to share with you another guest blog post from another cancer blogger. Ronni Gordon writes “Running for My Life: Fighting Cancer One Step at a Time” where she shares her ups and downs with leukemia. Here, in this guest post, she points out the value of the Internet when you’re on your cancer journey.

 

 

Cancer Blogger Ronni Gordon

 

 

 

 

I started my blog on April 1, 2008, with these words: “I’m like Lance Armstrong.”

 

“Just kidding,” I continued. “Since its April Fool’s Day, I thought it was a good time to get that out of my system. I do have some things in common with him, though. We both ride a bike and we both fought cancer. Sports helped pull us both through. Running and tennis are closest to my heart, and it was after struggling through a road race at just about this time five years ago that I learned I had leukemia.”

 

Not too long before starting my blog, “Running for My Life: Fighting Cancer One Step at a Time,” (runnerwrites.blogspot.com), I didn’t even know what a blog was. I came across them more and more when doing research on the Internet for my job as a reporter at a regional daily newspaper in Western Massachusetts. I didn’t think blogging was for me, until I relapsed in 2007 and found myself with time on my hands – and in need of a creative outlet -- as I recuperated from an allogenic transplant that I received at the Dana-Farber Cancer Institute on Oct. 15, 2007.

 

I thought it would be fun to start out with a joke on April Fool’s Day.

 

I had fun putting it together and writing it, but, thinking that nobody was reading it, I stopped posting.

 

Then I got an e-mail from PJ, whose blog, called The Plog, is about her double cord blood transplant. Except for the differences in transplant, she wrote, we seemed to be doppelgangers; we’re both runners who relapsed with AML, we both have three children, we both go to Dana-Farber, we’re both journalists, and we both, thankfully, were in remission again. I wrote back asking her how she found me, and she said it was just through browsing the Internet.

 

PJ told me about a support system she had developed through reading other leukemia survivors’ blogs and forming friendships that went beyond the Internet. She also told me about the LLS Discussion Boards, especially the section on Bone Marrow Transplant.

 

I have a huge support system, but I didn’t know anyone who had leukemia. I am very good friends with a breast cancer survivor, and we had our own informal support group for two. But when you start talking about blood counts going up and down or about bone marrow biopsies, nobody can relate like a blood cancer survivor. I mentioned to my friend that there were many support groups for breast cancer survivors but none that I could find for leukemia survivors, and she said, “I know. Who gets leukemia?”

 

Recently I was pleased to see that LLS is, in fact, sponsoring a blood cancer support group at the Cancer House of Hope in Springfield. I will try to check it out, but right now I am can’t go in public places; my October transplant failed to engraft and I am now home recuperating from my second allo on June 10.

 

Which brings me back to the Internet, which is especially alluring when you can’t get out as much as you want. Following PJ’s lead, I began to connect with other survivors who really knew what I was going  through. I also jumped into the Discussion Boards and found many kindred, and incredibly supportive, people. I feel like I know many of these bloggers and contributors, even though I’ve never met them.

 

There is, of course, an upside and a downside.

 

The upside, I think, is stronger. There is so much comfort in knowing you’re not the only one, and in hearing all those success stories. People who’ve been there have provided advice on problems large and small. For example, I wrote that I was afraid to make plans. Someone answered, “You have to live your life. Start by making short-term plans that you can handle.”

 

I wrote of some of my successes, such as getting back to tennis, and I felt that my friends in the blogosphere were cheering me on. I, in turn, was able to provide advice to people who were scared about some things that I had already been through. That made me feel good.

 

And I discovered other resources for support, through following links on other blogs.

 

Finally, writing a blog helps me frame situations in a productive way. When I encounter a bump in the road, I often switch gears into thinking about how I will write about this or that problem. It helps to remove the rawness of the situation, and sometimes to even find the silver lining.

 

The downside is easy to imagine. You connect with some people who get very sick or who don’t make it. You read about someone else’s problem and think that suddenly you’re going to develop it too. You put a question out there – either on the blog or discussion board – and if nobody answers on the discussion board or posts a comment on the blog, you feel neglected.

 

You have to put up your boundaries, get your head out of your computer, take a walk, live your life. You have to remember to read about other things, to finish the newspaper and keep up with the books you’re reading. You need to think about something totally different, or else the Internet experience will be more draining than rewarding.

 

It’s a fine line, and I’m still working on it.

 

And of course, I blog on.

 

 

 

 

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Learn more about leukemia, blood and stem cell transplantation, as well as other treatment options.

 

If you haven’t already, join The Leukemia & Lymphoma Society’s online patient community, the Patient Services Discussion Boards. You can also find in-person, face-to-face support groups near you.

 

As always, feel free to contact us with questions about any of the blood cancers or our programs at (800) 955-4572.

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This time of year we all seem to have so much more to do. Why not plan some things just for you? If you have myeloma or know someone who does, check out our new fall program at The Leukemia & Lymphoma Society (LLS). We also have several local events (Chapter Education Programs) about all types of blood cancers going on throughout the year. Included below are some offerings you may want consider in the coming weeks and months.

 

National Education Programs

 

October 15, 2008 - Understanding Myeloma: From Diagnosis Through Treatment. Register now for this telephone education program which will feature Dr. Asher A. Chanan-Khan. Participants will have a chance to ask Dr. Chanan-Khan questions during this hour and a half program.

 

Chapter Education Programs

 

Contact your local chapter about the availability of the following programs in your area:

  • Welcome Back: Facilitating the School Experience for Childhood Cancer Survivors - Note that parents are also welcome at this event.

  • Getting the Best Cancer Care at Age 55 and Older

  • Milestones in Myeloma Therapy: An Overview for Patients and Caregivers

  • The Road to Discovery: Emerging Therapies in Blood Cancers

 

There are also other programs that occur all throughout the year. Find out more about the following on-going programs:

 

  • Family Support Groups - These are regularly scheduled meetings that bring together patients, families and friends.

  • First Connection - Be matched with someone who has been through a similar cancer experience. Volunteers are also welcome to join this program.

  • Chat Sessions - Every Monday and Wednesday NHL patients are welcome to come online and chat about their cancer experience.

 

As always, feel free to share suggestions, ideas or questions with our Information Resource Center staff. Contact us via our Contact Us form or by phone at 1-800-955-4572. Or just visit us at www.LLS.org.

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