Pat's Place: How Do Others View Our Cancer?
As a multiple myeloma patient, it can be difficult discussing our cancer with other people. It’s not that it’s hard to talk about myeloma, but it’s hard to know how much to share or not share – how much does the other person really want to know?
I had a somewhat unique experience of knowing a multiple myeloma patient before my myeloma diagnosis.
Loren Liedl was a dear friend of mine. He was a quiet family man who lived with multiple myeloma for over twelve years before he died late last year.
We served on the Humane Society Board of Directors together in Amery, Wisconsin, and I remember when Loren announced to the Board that he needed to take a leave of absence. Apparently, radiation had not been enough to control tumors (lesions) in his skull, and he needed to get a bone marrow (stem cell) transplant.
At the time, I didn't really understand what he was saying. I didn't know enough about his condition. I heard “tumor” and “radiation” and “transplant” and “Mayo Clinic.” That's it.
Like most of us prior to our own diagnosis, I had no idea what multiple myeloma was—I wasn't even sure it was cancer.
It took me months after my own diagnosis to realize that Loren and I both had multiple myeloma. It wasn't until Loren's wife, Joan, reached out to me by phone while I was in the hospital that I made the connection.
I reflected back to that June 2006 Board meeting, which was less than one year before my myeloma was diagnosed. How ironic that at the very moment that Loren told the Board about his multiple myeloma, I too had the same cancer—I just didn't know it yet!
I have tried to think back and remember what I heard and how I felt, listening to Loren describe his condition. What I have learned is this: Most people don't have a clue what we are talking about when we discuss myeloma or our therapy.
I understand ours isn't the only cancer which isn't self defined. Lung cancer, kidney cancer, breast cancer—and a host of others—are easier for outsiders to understand. Leukemia, lymphoma, and multiple myeloma are not. I'm guessing most of you reading this column have had someone you know confuse melanoma (skin cancer) with myeloma.
I try to use that awareness when I speak or write about multiple myeloma. I use terms like "bone marrow cancer" to describe my disorder. I might add how the cancer left “holes in my bones” before immediately reassuring them my cancer is “under control.” God forbid we should make anyone else feel uncomfortable!
Some days we all just want to look and feel “normal.” At other times we need support and reassurance, hoping others will understand how hard it is to have cancer. We want them to acknowledge what we are going through.
However, when someone asks us, “How are you?” or “How are things going?” or “How are you feeling?” they usually don't really want to know the details! Take my advice: Keep it simple! Short answers are best. “Better!” or “Just fine, thank you,” work well. “I'm not having a good day,” can be a real conversation starter—or stopper!
Of course, there are times I have used people’s uneasiness to my advantage. Have you ever wanted someone to feel sorry for you? Start talking—in gory detail—about your latest botched IV or difficult procedure. Or open with a line like: “I think my cancer is back!” That will get their attention!
All kidding aside, it is hard enough for those of us with multiple myeloma to deal with our cancer. It is almost impossible for those we meet socially or at work to understand—and we shouldn't expect them to. How do others see our cancer? They don't! Handling casual encounters with grace and a bit of honesty will endear you to others—and help you feel better about yourself.
Now if only I can follow my own advice and not tell everyone I meet about the results of my latest MRI! Feel good and keep smiling! Pat
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Hi Pat:
Nice to know that you can share insight to others business colleagues about your cancer. There are many experiences shared that when your company or even business colleagues know you have cancer, they see you in a completely different spotlight.
For some, the decision to even "come out of the closet" to even let your business colleagues know you have MM or any cancer is a very difficult one. Many companies view an employee differently once they know, and in this world of downsizing (although not legal) that bit of information plays that into their decision making process to keep health care costs in check.
This exact experience has been shared many times on the listserves. So to answer your question about "How do others view cancer".. sometimes its best to not let them know at all.. Just sayin'
Hi Pat,
You describe my experiences to a T. And yet, I made a conscientious effort to tell colleagues, friends and family, initially face-to-face, about my cancer, and now use email, with the subject line: Glad You Asked, to relay my progress to those who are interested.
As a business owner, I believe it was more important to get the facts straight to avoid alarming gossip. I am 70-days plus stem cell transplant -- back to work full time, and the support from all has been both overwhelming and wonderful.
Yes, there are those for whom the word cancer evokes great emotion, and yes, I lost business. But, what I and my family gained strip away any of the downside.
Allowing others to express their thoughts, fears, good wishes and provide support helped me and, I believe, helped them.
Barbara and Carol-
Thanks for reading! Carol, I love your subject line: "Glad you asked!"
Interesting that my editor, Julie, was also curious/concerned about my superficial approach outlined in this week's column.
No worries, ladies! I would never advocate "staying in the closet," or not discussing my (or your) cancer with someone. I am obviously very open about my situation. I was simply making the point (partly tongue and cheek) that casual greetings from acquaintances or someone we pass on the street are best kept light and simple. People tend to be self absorbed, don't you think? "How are you?" is a greeting--not necessarily a question.
I appreciate both of your insights. This is a complicated, individual issue with no right or wrong answers. I just got tired of seeing people's eyes "glaze over" as I went into details about my latest test results. Take care and good luck--and you can share the details of your life and cancer with me anytime! Pat
Hi Pat,
I'm sure there are plenty of casual acquaintances who ask "How are you?" and are relieved to hear "Fine, thank you," or "Today's a good day." I'm sure there are also plenty of people who care deeply about you but can't help the "glazed over" look just because they don't know much about myeloma or how it's treated and have trouble following the details. So, they too are glad to hear a brief response.
As someone on the other side of the fence (not a patient), I'd be interested in hearing from you and other patients about: How do I express to a cancer patient that I really do mean "How are you doing?" and that I'm not just trying to be polite.
I'm sure you often have to make the call on a case-by-case basis, but how do you decide who to give the polite answer to, and how do you decide with whom to share the details?
Thanks for asking, Julie! Like most things in life, experience helps. Early on I think you let it all "pour out." Who cares what someone else thinks! As time goes on and you become more comfortable with your situation, I think you pick your spots. I was formerly in sales, so it is tough for me to be brief. Some patients may need prompting and don't feel comfortable elaborating or sharing. I try and remember the greeting "How are you?" is most often just that--more of a greeting than a question. If you ask specific questions, like "When was the last time you saw your doctor?" or "How did last week's tests turn out?" I'm sure you will get more info than you bargained for from most patients! Pat
If I only had a dime for every time someone has confused myeloma with melanoma! Although I know I should consider that confusion an opportunity to educate others about multiple myeloma, it is still frustrating. But again, I never heard of the disease until it "introduced" itself to me! I sometimes wonder, "what about all the other cancers I'm unaware of? How many others share my frustration that more focus isn't put into finding a cure for "their cancer"? At least The Leukemia & Lymphoma Society and Multiple Myeloma Research Foundation are doing their best to find a cure and coming up with new treatments to prolong remission!
Amen, Lynda! Lots of new therapies and hope and many, many people working hard to help us! Thanks for reading- Pat
Hi Pat,
I've had some of the same experiences as you, but some others haven't gone as well. I have had to wear a soft collar around my neck due to a tumor eating up my c-2 vertebrae. Some people seem to think its ok to joke about what mac truck hit you or what's the other guy look like. Sometimes I ignore these people, but other times I can't; if its a bad day I can't. What I usually do is just say (with a stone cold face) "It's Cancer" and walk away as their face drops. I know its not the best way to handle the situation, but what I am hoping for that the next time they see somebody like me, they will think twice before opening mouth to a perfect stranger.
My husband wishes I wouldn't do this, but then is totally amazed by how many people (that are total strangers to him) stop me and ask how I am doing. I worked retail for 15 yrs. and these people are former customers of mine who I have helped in my job. Others are people who know me from where I shop on a weekly basis. These people make me happy and lift my spirits and I try to lift theres. I'm a stage 3 and 100 days from a stem cell transplant; and I'm in "Complete Remission", 0 percent plasma cells. I am looking forward to hopefully a long remission and traveling with my husband, and helping raise my step-grandson. He is smart as whip and should keep me on my toes.
i
Deidre-
I get it! My wife wishes I wasn't so open (and sometimes using my gallows humor)about my cancer. She is very private about hers. So glad you are doing OK! Pat
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