One of the hardest periods of my life began that January day in 1992, when Rob and I got the confirmed diagnosis of leukemia. My heart sank, weighed down by fear of what was ahead. But, encouraged by Rob’s oncologist, we began learning about drug protocols that would keep him stabilized, and the process for finding a non-related donor for a bone marrow transplant. The one thing we didn’t talk about at the time, which neither of us even thought about, was what kind of support we might need to get through it all…..
Rob’s support came from the very small circle of people he chose to tell about his condition…. His 3 closest friends, 2 colleagues at work, and his mother. We knew no one who had lived this nightmare…. Where else could we turn to to share our experiences and gain support? There was no internet, and hence, no on-line support groups, hospital-run support groups ran on schedules that didn’t fit our needs, and we knew no one who had lived this nightmare. We did the best we could with our close friends and family, but for the longest time I felt isolated.
My first ‘real’ support system came from Faith, someone who was also living my nightmare, as it turned out, and who lived close by. Her husband Dom and Rob met in Boston when they were both in the hospital for pre-transplant procedures, and discovered they lived in the same area of CT and were going to be in the hospital at the same time. The four of us got together in the early summer of 1993, becoming acquainted and realizing that we could support each other. When Dom and Rob entered the hospital, Faith and I sought each other out, comparing our days, what our husbands were going through, and how we were feeling about it all. Knowing that I had someone to talk with who really understood my situation helped make a difficult situation bearable. To this day, I know that if I ever need her support about this, she’s there for me.
What, then, does it take to provide emotional support to a patient or family member battling a blood cancer? What’s your story? Have you or a family member needed support through a time like this? If so, where did you find what you needed? What advice would you give someone else in need of emotional support while fighting a blood cancer?
Share your thoughts and help others make a blood cancer connection…..