Guest Blog: A Caregiver’s Perspective on The Hand to Heart Project

A guest blog post by Bobbi Rosenquest.

After my husband’s cancer diagnosis, my life filled with strangers: medical professionals from oncology, physical therapy, radiology, neurology, urology, palliative care, along with pharmacists and mental health therapists. Behind each individual were nursing professionals and office personnel to schedule appointments, administer chemotherapy, order and adjust medications, and respond to our phone calls. My reactions were how fortunate we are to be recipients of such care, and how very much alone I felt.

Dealing with the impact of cancer has become an everyday reality for my husband and for me.  Having recently retired we had lots of plans, but we found ourselves living a life dramatically different from the lives of our friends and family. Our medical team is generous with their expertise and their wisdom. But there are too many of them to relate deeply, and none can be available day-to-day.

I have a cohort of close friends and family members who are always within reach.  I have read testimonials, books, etc.  But neither my support group nor what I could learn on my own provided me with ways to understand, prepare, and sustain myself during this time. Caretaking is difficult to understand unless a person has been in that role; yet each person’s experience is different. My sense is that caregivers must find their own sources of information, support, and useful insights.

One way that I have found to cope, understand, and possibly grow is through poetry. I had never read poetry, understood poems, or written a single line before this past year. Poetry began to make sense to me after a few massage visits by Steve Gordon from The Hand to Heart Project. At-home massages create a space away from logistics, physical hardship, emotional tension, and social isolation. This important service begins with the patient and is extended to the caregiver. For me it provided a type of support that was difficult to find.

Steve’s many years in homes like mine allow for questions, encouragement, humor, and guidance about day-to-day stressors, confusing circumstances, difficult emotions, and moments of enjoyment. Much comes in conversations during a massage, but what I have found especially helpful comes through the poetry that Steve quotes or sends after a visit. The poets he cites understand waiting, fear, hope, loss, and solace. They add to the understanding and compassion that he offers. The power of this poetry is enhanced by having been shared with Steve’s other clients, from knowing that past patients and caregivers have found recognition, comfort, and empathy in certain words. And the words are always available on days that follow if those days are lonely, frightening, or possibly peaceful.

I have started finding new poems that are personally insightful and sustaining. At times I write about my feelings, discoveries, and difficult days. I don’t keep a journal so writing a poem, even a haiku, helps me make sense of events and feelings. It has become a way to look for hope, to allow recognition of my new reality, to build strengths and capacity, and to be alone without being afraid.

None of us can know the trajectory of our lives after a cancer diagnosis. We don’t know the professionals who will guide, administer, and smooth the road as much as possible. We cannot anticipate the compassion of people like Steve Gordon and Hand to Heart, or a favorite infusion nurse, or a counselor at Bayada hospice. And we cannot imagine what will calm the spirit and renew enthusiasm for the future. For me poetry was one route, and I’m open to discovering other answers.