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Solidarity and Sorrow: The Mix of Being in a Blogging Community (Part 1)

Solidarity and Sorrow: The Mix of Being in a Blogging Community (Part 1)

There are pros and cons of blogging in a community with people who have, or have had, the same or similar illnesses.

The good part is the sense of solidarity, of knowing that other people have the same challenges, and of sharing and receiving tips for getting through it.

The bad part is when something you read activates a traumatic memory or when you over-identify to the point of believing you will get the other person’s symptoms.

Blood cancer survivors might not have the same level of PTSD as a soldier who has gone to war, but post-cancer PTSD is real. And you never know what will bring it on.

Sometimes, what you read makes you worry more, not worry less.

Sometimes, your virtual friends are not going to do well, and that is going to make you feel awful.

Not a good bedtime story

The other day, I read a post written by someone who has CML. She wrote about how it never goes away. I read it before bed. This was not a good idea. Her struggles haunted me. I had a nightmare. It was a version of the old relapse dream that I have had less and less as the years have passed after my fourth stem cell transplant, in 2009.

I dreamt that something didn’t look right at a checkup. My doctors wanted to do some tests. They started to draw a timeline, beginning in 2003, with my diagnosis at 48, a relatively young age for acute myeloid leukemia.

I said I didn’t know what they were looking for. I thought that I was officially cured five years after that last transplant. They weren’t so sure. I might be relapsing.

When I woke up, I had to shake off the feeling of impending doom.

Mutual support helps

Still, all in all, it’s good to connect with other blood cancer survivors.

There aren’t many opportunities to talk about the challenges of stem cell transplant recipients. When my year of isolation was over, I looked around for blood cancer support groups but couldn’t find anyone.

Years later, a doctor and nurse who live near me, and who both survived AML, noticed the same gap.

In a feature that I wrote about them for the Dana-Farber Cancer Institute, where we were all treated, the doctor, Jay Burton, said, “You need someone else who can commiserate with you.”1

He recalled that when he learned he would need chemotherapy, total body irradiation and a stem cell transplant, he wondered first, “Am I going to live?” and next, “What was I going to miss?”

Connecting through shared experiences

The nurse, Kara Sawyer, who had T-cell lymphoma and leukemia, had co-facilitated a support group for the Leukemia and Lymphoma Society.

“The transplant component and the isolation that follows is unique,” she said. “It’s beneficial to connect with others to learn the strategies to manage that journey.”

In 2015 they started a support group, Survivor Journeys, near where I live. By then, I had been through the worst of it. But it was beneficial to go to some meetings and talk about shared experiences. Also, it felt good to be a resource, as someone who has been there.

Read Part 2 of this series, Finding Soulmates Through Blogging About Blood Cancer.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Gordon, R. Doctor and Nurse Team Up for Blood Cancers Support Group. Insight from Dana Farber Cancer Institute. Available at https://blog.dana-farber.org/insight/2017/04/doctor-and-nurse-team-up-for-blood-cancers-support-group

Comments

  • Ann Harper moderator
    2 months ago

    I know exactly what you mean. When my daughter, Crystal, could out she had Hodgkin’s Lymphoma she started looking at all the sites. She got a lot of information, but they also scared her. She is cured now and usually doesn’t go on the sites because they depress her, but I know she has kept in contact with some of the people that supported her and gave her so much information about her disease.

  • bluchs
    3 months ago

    I must say! That I Believe, The Good, Out Ways The Bad.
    I have found this web site, to be a fantastic forum for support, Really!
    I do have nightmares a lot, but I think many of them are caused by opioids ( side effects ) PTSD, who is to say, that ours are any less painful or real than a soldier, or a cop, etc.
    I can be driving or shopping etc. and, all of a sudden, a bad memory will come, and I will tear up, no matter where I am, or what I am doing. Mutual support does help, at least it helps me, I think, THE MORE WE ALL SHARE. The more, We can help others, in this same boat, with us.
    Cancer Sucks! But his web site and all of the members, and moderators are all helping one another to fight a good fight. The best we can!
    Solidarity and Sorrow, OK, but not on our own, We all have each other here!

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