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I was on the phone with a new cancer patient the other day. We had started our conversation as we had typically done before. I had asked how she was doing, how her pain was (not so good today) and how the second appointment went with the Nephrologist that I had sent her to go see.
At that, she was speechless, and I was horrified. Was he as bad as the first guy? Did he too tell her that he did not care that her only daughter was graduating from 8th grade in a few weeks, that she would have the open nephrectomy and it would be on his schedule, tough if she missed his daughter’s graduation? (I guess he may have not realized in the moment of his bombastic outbreak she may never see another graduation of her daughter’s again.)
Did he say to her that people live in chronic pain all the time and that she will have to live with it as well? He did not care that she was having pain, did not want to address it, did not care that she also needed a total abdominal hysterectomy with removal of her ovaries because of the huge cysts that were there were digging into her sciatic nerve and edging her toward insanity on the pain scale. He was uninterested.
She left there a broken woman with not only a diagnosis of cancer, but no shred of hope or decency left and no where else to go. This man was supposed to be the specialist, right? She even called her OB-GYN who said that he did wonderful surgeries and, yes, he would recommend him.
I called her a few days after this nightmare happened. She explained what happened to me. I was angry that any doctor who took the Hippocratic Oath could even stand there and say to anyone that I am your priority, not you, not your family, but me, and your pain is not real, get over yourself.
I called everyone until she had a few doctors to go and see. The first one she went to was the one I was waiting to hear about. So, as she got her words together she said, “Do you know what? He actually said to me that if this interferes in any way with the graduation of your daughter from eighth grade, we will wait. Also, he addressed my pain issues. He is putting me on pain meds now and will discuss the time frame that I can have my abdominal hysterectomy after the laparoscopic nephrectomy for my kidney cancer. He said he knows I will do well!”
She was thankful, so happy and relieved that she found someone who listened. He cared about life more than disease and her more than himself. He was her advocate.
I am still with her; she is going for surgery soon. I will continue to follow her and advocate for her care. It makes me weary for the many people out there who do not have the advocates, supporters, family, loved ones to assist them with the unknown of the medical world.
We get sucked in with the fear and the god complex of these doctors. Why is it like rolling dice to find a good doctor who can help you? When you have a disease, it feels like you are in another country. You need an expert to bring you home, not send you further out.
I have had this experience happen to me. For three years I fought as an alien in my own skin to be diagnosed with something that was tearing me apart. My doctors blamed it on my children, depression; doing too much, pain pill seeking. In the end, with two wonderful doctors and 3 years later, I was finally diagnosed with systemic lupus. But those first few years were frustrating and painful and a cause for crisis. Even as a nurse, I did not know better, trusting, not going for those second opinions that I make sure patients get. I tell them that they are interviewing these doctors like you are interviewing someone who is doing work on your home...
Please, be an advocate for one another. Take care of yourself as well. Always get another opinion. Check with your insurance and see if they have services to assist you with your specific disease, you may be surprised, they just might. You are the most important person. No one should live with chronic pain, or for that matter, chronic doubt about a doctor or care.
Cassie is an eleven year cancer nurse with inpatient and outpatient experience as well as case management and managed care experience. She has also utilized the skills and compassion that it takes to be an oncology RN to work as an inpatient hospice RN. Cassie has a true love of nursing and her patients.
The viewpoint expressed in this article is the opinion of the author and is not necessarily the viewpoint of the owners or employees at Healthcare Staffing Innovations, LLC.
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