It’s not easy to be good at something you hate, especially when it comes to being a patient.
Having lived through two miscarriages and infertility before cancer hit, I had basic skills. I knew how to show up (on time) for appointments, wait patiently no matter how long it took, honestly answer questions and listen intently.
But cancer took being a patient to a whole new level. There was a new language, not much time to learn it, and much more on the line, like the two children we now had to worry about.
Being older and more experienced than I was when we struggled with infertility helped. When I was diagnosed with cancer, I was somehow able to stop my breast surgeon as she explained the “how” of my mastectomy to insist that she go back to the “why.” To prepare for an intelligent conversation about reconstruction with my plastic surgeon, I researched options at credible Internet sites.
I tried to ask questions, speak up and be my own advocate. As time went on, however, cancer wore me out and I had less and less energy to assert myself.
After my unilateral mastectomy, I returned to the breast center where it all began. I was there for my first mammogram after my surgery and it was like going back to the scene of the crime.
I was already emotional, but holding on, when the technician came into the waiting room and proceeded to grill me as to why I needed a mammogram.
Once inside, she still didn’t understand (despite the fact that she had my records) which caused her to wonder (out loud) if I knew the difference between a lumpectomy and a mastectomy. Finally, she debated whether I really had breast cancer (because it was stage 0) and opined that having a mastectomy meant I “didn’t have to worry about it anymore.”
I tersely answered her questions, but didn’t protest her behavior. I had every right to make a scene, but didn’t because I was afraid of falling apart and all I wanted was to get out of there in one piece.
The next day was different. I called the breast center, asked for the manager, and explained what happened. She was empathetic, validated my concerns and handled the situation. Even so, I immediately transferred my records to another breast center. The emotional reaction I had just walking into the building was too painful and there was no reason to subject myself to it again.
And yet, I subjected myself to many other things I couldn’t handle. The worst was probably attempting to teach my teenage daughter how to drive. The day we were in a parking lot and she hit the gas instead of the brakes, I lost it and ordered her out of the car.
After I calmed down, I realized that teaching a teenager to drive while dealing with cancer was just too much for me. When I told my daughter how hard it was and that I needed a break, she understood and was relieved.
In a perfect world, we’d be prepared for every medical encounter with a steely resolve, a list of questions and at least one companion in tow. In a perfect world, our real life stresses would abate until we were better able to deal with them.
In the real world, we’re often surprised by bad news, reeling and alone. In the real world, our anguish doesn’t end with treatment despite the pressure to be “over” cancer.
Cancer taught me that being a good patient means doing the best you can, for yourself, at the moment. Even now, six years out, it means easing up on expectations and acting with self-compassion when test anxiety resurfaces.
Are you a good patient? Do you take good care of you or do you expect too much of yourself? Tell me in the comments. I respond to every one.
Taking care of myself means many things . Almost 13years since diagnosis, I am proactive about health concerns. Like my thyroid which gave out year 5 post treatment, I ask for detailed blood work to follow its levels. Low levels caused a little pituitary tumor to pop up! I advocated for a referral to endocrinology. For fun, I go to yoga, teach yoga, play with our one year old dogs, sing, get massage, have friend time. Cancer did give me permission for extreme self care!
I tried to have a conversation with an oncologist I was interviewing for treatment; I asked what type of breast cancer I have. My sister had breast cancer 22 years ago, she was told she had Malignant neoplasm of the breast . I was told from a surprised Dr ' you have breast cancer'. I looked at her as if she had two heads. I know it's breast cancer. What kind of breast cancer? She had no response. Did she think I was too stupid to understand? Needless to say I did not choose her. My second interview was over the top invasive . 'Take all felmale organs & both breasts. 'My cancer had not advanced as to need that. On to the next Oncologist. I might add I got three vastly different opinions on treatment including no treatment, 'I'm not sure 'was first response. Really! I chose number three. She was easy to understand, clear on treatment, readily available by e-mail by her head nurse & staff giving me chemo was compassionate as well as informative. Whew dodged that bullet!! I am entering my fifth year. Now I need new diagnosis for bladder cancer. Do I have it or not. Waiting for my appointment to be here soon. Am I worried? Yes I am. I am trying not to be too impatient. Easier to swim on sand I think. But I will take their advice & question n my oncologist , she will give me the answers I need. My advice to anyone that asks me, find the one Dr you trust & can talk to like you're not a five year old. Speak up, ask questions reasonably. Take responsibility from them transfer it to You.