When I was receiving 6 months of ABVD chemotherapy for Hodgkin's Lymphoma, the drugs were administered by the kindest and most patient professionals -- day hospital nurses. Nonetheless I hated these women because they pricked me with needles, their work made me vomit and after I spent the day with them, I then experienced the worst days of my life.
I had 12 rounds of treatment, and despite the love and support from nurses, family and friends, I dreaded every round. Although it was nearly six years ago, images of the nasty red drug they pushed into my veins and the brown plastic drip bag, whose contents took two hours to course through my body, still bring a horrible taste to my mouth. Being a cancer survivor is as much about surviving the treatment and the health care bureaucracy as killing the unwanted, proliferating cells.
Apart from the harsh but necessary chemotherapy and its effects, the diagnosis process was one of the worst aspects of having cancer. As a new patient, I was scared, but not yet hardened, jaded or inspired to fight back. One problem is that some health care providers are simply not compassionate. If you have experienced ongoing medical care, you have probably suffered through some indignities. Please tell me about them below in the comments, or find me on Facebook at Caroline Cicero Gerontologist.
For example, while two pathologists stabbed me with a needle at least seven times to biopsy the hardened, golf ball sized tumor in my neck, an ultrasound technician who was supposed to be ensuring the doctors did not puncture my carotid artery was talking on the phone about her new car. There were four doctors present at the time, and I was waiting for one of them to tell her to hang up. After the doctors left the tiny room, she kept on chatting as she wiped the blood from dripping down my chest. In another instance, I waited in the hallway for three hours with a needle stuck into the top of my hand before I could get a CT scan.
The capper, both for the diagnosis period and insensitivity, was when I was lying on a table waiting for my oncologist to come and stick a long needle through my spine to extract my bone marrow. Two hours prior, I had been injected with radioactive material during a PET scan. The two women in charge of me were whining that my doctor was making them late for their lunch break. When they noticed tears rolling down my face, one asked me, "What's wrong, honey?".
"What do you think is wrong?" I replied, "One month ago, I was just a mother of a 3-year-old and a 6-year-old, and now I am lying here, radioactive, wondering if I am going to die and listening to you complain about your lunch break."
Compassion, sensitivity, and empathy are hard to teach. Social work, counseling, nursing and medical schools try, but these efforts may be lost on students with under-developed social skills. By the end of my cancer ordeal, I realized that there was a relationship between what I was wearing and the way I was treated. When I was wearing a hospital gown, I was treated far worse than when I wore my own clothes.
Soon after I finished chemotherapy, I rushed to get the intravenous port removed from under my skin. Fully dressed, I waited in the hall for a short period of time. When it was my turn, the same people who had disrespected me in previous occasions treated me like a real human being.
During the whole experience, I was able to speak up for myself. I didn't complain often because it took too much energy. Just staying alive was hard enough and I knew I would speak my mind one day. But what about people who aren't able to communicate because they cannot talk or hear, don't speak English, or were raised in a culture where one doesn't question authority? Many people wearing hospital gowns are old, frail, alone and needy. America has a growing shortage of qualified health care professionals who will serve them and the rest of us with sensitivity and compassion.
The Caring for an Aging America Act (S 1095), sponsored by Democratic Senators Boxer and Kohl, Republican Senator Collins and Independent Senator Sanders, is an effort to train health care professionals for our growing aging population. If passed, the law would offer student loan repayments in exchange for specialized training in geriatrics and gerontology and for working in under-served areas. Incentives are needed to attract students into careers caring for the most vulnerable -- whether in cancer hospitals or in primary care. Insensitive types need not apply.