More pictures from last weekend? Why not? Tomorrow is another college football Saturday. I’ll share more then. But first I wanted to follow up on a very serious subject: reader responses to Tuesday’s post, pleading for emotional help and support for me and my fellow myeloma patients and caregivers:
I’ve poured through dozens of emails I received on the subject. It didn’t take long for two key things to jump out at me. First, I may have underestimated the power of support that patients and caregivers can find online. It’s one thing to unburden ourselves to friends or family. But for many, composing one’s thoughts and fears for others to see elicits support and feedback from fellow myeloma warriors that understand. For many of us, that’s enough to help get past an occasional bad day.
Second, I quickly figured out that two types of readers were contacting me. The majority shared tips for things that had worked for them in the past. Here’s an example.
Sarah from Seattle emailed this:
Today you wrote about how to emotionally cope with disease effects. I struggled with this a lot at one time (doing ok now). I was able to find an in-person counselor who I met with weekly for a few months. It really helped me. I found her by googling “cancer counseling” and she popped up as having this as her specialty/focus area. She happened to be a breast cancer survivor herself and was a young woman. While counseling wasn’t a comfortable experience, it did really help me to deal with my emotions.
Also, I would pass along this tidbit: At work I sit next to a social worker and I have heard her say to many patients “finding a counselor is like trying on shoes–you have to keep trying different ones until you get the right fit.” There will be someone out there you connect with, don’t give up on the idea of counseling.
I received a number of emails like this. Readers that had found help online, by phone and/or by working with a trained professional.
Others found comfort in religious scripture. Praying–and knowing others were praying for them–seemed to be enough to control their anxiety and calm their fears.
However, I also heard from several people who desperately needed more help than I can give. And my guess is the simple, common sense solutions proposed by readers like Sarah aren’t enough. These patients or caregivers are despondent and sometimes clinically depressed. They need the help of trained professionals; counselors or therapists experienced working with people who’s world has been rocked by cancer.
For the rest of us, I can’t think of a better place to start than by interacting with the online multiple myeloma community. I know I think of all of you as my part of my family.
My only concern is “attaboys” and “You can do this,” affirmations only go so far. The next step: searching out suggestions for ways to find support. Maybe that means finding a Facebook myeloma group that you’re comfortable with. Or calling an IMF phone counselor for help. And if they can’t, counselors there may be able to point you in the right direction. I’m aware of several phone counseling and mentoring options. And I know several of the drug companies provide referrals to groups like Cancer Care armed with compassionate professionals trained to work with you over the phone.
Speaking of drug companies, Onyx (now owned by Amgen) started Onyx 360 after Kyprolis was approved. Nurses there can refer you to an experienced phone counselor. I believe Celgene and several others are developing patient mentor programs, where you can talk with fellow patients and develop a relationship over the phone.
The LLS, IMF and MMRF have all rolled out mentoring programs over the years. For one reason or the other, it’s proved challenging to keep them going. Check and see if one or more of the groups can still help.
I need to do some follow up to compile a list of resources that support patients emotionally. I’m on it! I’ll share another post–complete with contact information–sometime next week.
As always, if you would like to suggest a method or organization that has helped you, please pass it along. I’m not going to let this go. I think emotional support is one of the biggest unmet needs we face as we ride the multiple myeloma roller coaster.
I know it’s hard sometimes, but try to feel good and keep smiling! Pat