Having cancer can be a lonely experience, and it’s not always so easy to find others with a similar diagnosis. Even if you could, you might not always want to talk about everything face to face.
Sometimes an online discussion board is just what you need.
The Leukemia & Lymphoma Society’s (LLS) discussion boards, where people can post messages under a pseudonym and read others’ responses, can be particularly helpful for anyone who has a hard time getting out, can’t find a local support group, or has a less common diagnosis. LLS’s boards offer more than two dozen topics to choose from, including “Newly Diagnosed,” “Young Adults,” “My Child Has Cancer,” a caregiver “lounge,” and individual boards for each blood cancer diagnosis.
By tapping into a much larger community, not bound by geography, you’re more likely to find someone meeting specific criteria or who had a similar experience, according to LLS Information Specialist Rebecca Herman, who recommends the boards as another option for support.
“They can be a good way to find others going through a similar experience and research concrete information and resources,” Herman said. “And if you’re not comfortable discussing something, this allows you to be anonymous and not have to look someone in the eye.”
Guest blogger Yelak talks about leading and directing your medical team
Who is Goliath? Goliath, in the Bible, was a giant who couldn’t be defeated because of his huge size and power. In our world of myeloma today, Goliath is the might of medical care, medical insurance, treatment options, clinical trials and all the daunting tasks of living and dealing with myeloma.
You and I, the myeloma patient or family members, are David. Unlike the story in the Bible, if we go up against Goliath one on one we’re likely to be flattened. So, we don’t do battle with Goliath; we learn to deal with Goliath. Over the last 20 years, since I was diagnosed with myeloma at age 25, I have just done that. Let me note that I am not a medical professional. I am a patient and would like to be considered a “customer” of Goliath.
When I was first diagnosed, I hadn’t even heard of multiple myeloma. I almost certainly didn’t have any idea about what treatment would be best or even what the options might be. Even physicians who come to our support group diagnosed with myeloma rarely know much about the disease -- at first. Thus, initially, I relied on what my oncologist/hematologist said I must do. Before long though, I became educated enough to form an opinion about the treatment I wanted.
Doctors are trained to take charge, and most patients, alas, don’t really want to know much. They just want to be fixed! But, if you want to lead and direct the medical team that “fixes” you, here is what I think you should do.
I would never have imagined that at the age of 29, I would be lying in intensive care fighting for my life with stage IV anaplastic large cell lymphoma (ALCL). What a wake-up call, literally!
Nicknamed “Sleeping Beauty,” I woke up after three weeks to learn my true diagnosis following months of illness. By the time I opened my eyes, I had already undergone my first five-day round of chemotherapy…with five more sessions to go. It was going to be a long summer.
But as it turns out, the treatments, emotional struggles, and spiritual awakenings were only part of the battle. Soon enough, the bills began rolling in.
I tend to be a Type A planner. The better insurance policies, retirement plans, a couple of savings accounts for a rainy day, and frugal spending were all my style. Lymphoma was not part of the plan.
Where to start?
So what did I do? At first I skated by paying the smaller bills with my income and savings. I made my way through the wealth of sick days I had accrued and spent a great deal of time at Atlanta Cancer Care of Northside Hospital and the Bone Marrow Transplant Group in Atlanta, Georgia. When I was coherent enough to begin my research, I didn’t focus on only lymphoma and care and nutrition, I also researched options for financing such a journey. I began with the office social worker -- and what an impact this had on me.