Illness experience IX: Voices from my body—anybody listening?

Chronicles of my radiotherapy (RT) treatment:
Day 1: Right breast, particularly proximal to operation site, swollen since evening. Swelling disappeared next morning.
Day 2: Again, local swelling and hardening of tissue.
Day 3: Feeling some muscle/chest wall tightness, like I was unable to stretch my arm or something.
Day 4: Chest wall feels tight whenever I try to move my arm in extension. Really uncomfortable. Shape of right breast changed; grooves over the skin.
Day 5: Same, increasing tightness of chest wall associated with arm movement. I almost need to stretch myself every now and then, or whenever I remember it. Some tingling sensation, like fine needle pricks, under armpit. Darkened nipple and areolar.
Day 6: Reported to therapist and saw the radio-oncologist. Nothing can be done, except to put up with it.
Day 7: Some upper-arm edema. Not sure if it was related to posture while sleeping. Started to feel some very occasional pain under breast, maybe several times today. Pain is only momentary. It goes away quickly.
Day 8: Right breast size has shrunk, also grooves on skin are firmer. Consistency of right breast is hard.
Day 9: Felt sticky beneath the right nipple area. Had sensation of being unable to “free” tissue from sticky tissue beneath nipple, even with stretching exercises. This is annoying.
Day 10: I am documenting this for my own interest. As a nurse, I have studied about RT treatment, but I have never learnt in detail about reactions to RT. I didn’t know what to expect.

Although each person’s reaction to RT or any kind of treatment can vary, I would still have appreciated it if someone had informed me of the possible reactions. Now that I am a patient, I realize that health professionals know very little about how patients feel physically.

I think of how I could learn to be a nurse if I were to learn about nursing again. I would treat my patients as teachers; ask them to tell me how they feel all the time. Only through firsthand experience or good secondhand experience (such as learning from patients), and not through broad-brush approaches like the big category “side effects” that we swallowed in school, can we become better nurses.

I also realize that patients usually only need listening ears instead of “fixes.” I have had doctors and health professionals who halfheartedly listened to my “complaints.” I was only reporting my discomfort and worry (for example, being concerned that my chest would easily become fibrotic). There was no consolation; I was simply asked to put up with it. If only I could find out whether my situation was unique and deserved attention, or commonplace and amounting to nothing. But I couldn’t find out what I needed to know. That is why I say that I would love to learn from my patients, so that I will have answers to address those concerns if I am asked in the future.

I am also aware that, as health professionals, we can’t take every patient’s complaint to heart. Compassion is a highly taxing emotion. It drains our energy. We can’t take all the problems of our patients to heart. We would be so burdened that we could not function. But it is our task to find the balance.

For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International.