Illness experience X: Final notes

To find closure, I feel I owe it to myself to document fleeting thoughts and emotions I experienced during my treatment period. I shall declare myself “cured” and will be going back to work on January 18, 2010.

My first thoughts as I write: The hospital is just like a big factory. Like other huge hospitals in Hong Kong, it easily treats thousands of people a day. Staffs are like nuts and bolts in a big machine. To be cured, patients need to be able to fit into the rolling factory lines. Exceptions are unwelcome. You become a nuisance if you dare to be different, even though it’s your body—not you—that may be acting out, developing symptoms and complications that are totally unexpected.

It’s best if your body only responds in ways that are commonly observed. If anything appears other than what the doctors normally see, you are on your own. Factory products are manufactured on assembly lines. Do not expect humanistic or individualized medicine. There is no room—no time or resources—for such practice. Sometimes, no such thing is done, so no one cares to think otherwise, particularly in an OPD. I haven’t been an in-patient. I can only imagine what that must be like.

A few days before my last treatment session, I met a woman coming out of the hospital. She told me she was 85. Her husband, 91 years old, was at home because she had asked him not to accompany her, although he had offered. An energetic lady, she pretty much initiated the conversation. She had completed physiotherapy, but still had pain in her feet, so went back to the reception counter to ask if she could talk to her therapist. The counter people told her that her physio was complete and her patient card had been taken back (by the OPD). So there was no way to help her and she wouldn't be able to find out who her therapist was.

Typical! Of course, something could have been done. Her name or ID-card number could have been used to retrieve her files. But no one was ready to make the effort to help this elderly woman speak with her therapist, find some answers to her problem or negotiate further referrals and treatments.

If you are frustrated or reduced to tears as you are churned through this big factory, you have to get over it on your own. By the third week of my RT treatment, I just couldn’t take it anymore. I hated the chest tightness I felt, which was increasingly bothering me. I asked to see the oncologist. There is one available every Monday, Tuesday and Friday. But when I told this young lady doctor my problem, what I heard was, nothing much could be done. I tried to negotiate a few approaches, but none sounded workable to her. I couldn’t help bursting into tears. I cried because I felt so helpless, that nobody could help me and no one really cared. My tears were flowing for a long while, even after the consultation, even when I got home and got into bed that night, and even now as I write.

Those who are literate need to look after themselves when they fall sick. One cannot rely on the goodness of health professionals to do good for you. This is sad, because there are so many unknowns and so much medical information available, and we are often too ignorant or the experience is too novel for us to ask the right questions. This is sad, because I am a health professional.

I think of how I used to teach care of older people. If I teach undergraduates again, I wonder how I will teach them. I used to think that I taught well. My special ability is to teach people how to think, not just how to do something. But looking back, how bookish my teaching was. Being a patient has taught me new things, both as a patient and as a teacher. I think I will be a better nurse and teacher from now on. Have I told you that already? This is not good news; this is sad news. I have already been a nurse teacher for 13 years.

Breast cancer isn’t a terminal illness. It isn’t even very serious in my case—1.2 cm mucinous (slow growing) tumor, stage 1, with no lymph node involvement. Nonetheless, it is a significant event in my life. Never have I felt such an urge to do good, to be useful, to make some marks during my sojourn on this earth. I think of all the things I have done in my career. I can’t name even one thing that has had lasting impact. All the things I have done seem so trivial. By “something big,” I don’t mean something astounding in the eyes of others.

There is a nurse-in-charge, the assistant superintendent of a nursing home, who always puts me in awe when I think about her work. She doesn’t have a big name in the profession, probably not even in her section of the industry, as her organization is rather modest about the work it does. She is so dedicated to the seniors living in the home; her commitment and care for them put me to shame. There is no way that we can make everyone under our care happy. But how fortunate are the couple of hundred seniors under her care. It doesn’t matter if not all the residents in the home like her and her service; she has led her team to create a caring and thoughtful environment. She has made her mark on the lives of these residents by making the nursing home a more homey place. This is the kind of “mark” I mean.

When I am approaching the end of my life, what will I say about myself?

I am not saddened by such thoughts, only puzzled. I hope these thoughts of mine will keep on urging me to reflect and do good. I hope that going back to work and living a normal life again will not take away the passion I now have to live a meaningful life—not the meaningful life I used to think about, but one that is humble and thankful, and in which I have time to listen and care for those who need it from me.

I will sign off here. Good health to all.

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

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.

Illness experience VIII: Perspective on life

I ask myself what it is I want from life. Or, what do I want for my life now?

Work seems remote nowadays. When Catharine came to visit me in the hospital, she said something like, “Don’t separate your time into what is useful and what is not.”

Yes, Catharine, I do have that tendency. I am conscious of time. Aren’t we all, all of us who were bought up to understand that “an inch of gold can’t buy an inch of time”?

What is it I want from my life? I will not say that cancer is, for me, a life-changing experience, but it does have an impact on how I see myself, and the world. My illness experience helps me realize that I need to do what I like, not what is expected of me by others. I have passed the stage of feeling vain about and for myself. I need to make a mark somewhere.

The other day, on the way to my RT treatment, I stepped out of the minibus and saw an elderly woman. Her hair was all white and she wore a mask. It was during the flu epidemic. Stooping over, she leaned her arm on the bus stop railing to get her balance. She took off her mask and tried to catch her breath, or vomit; I didn’t know for sure. I walked ahead, looked back, returned and asked if she was OK. She bade me to go on, saying there was no need to waste my time, as I must be busy.

She must have mistaken me for one of the staff at the hospital. I went on my way as I was told, not wanting to be late for my appointment, but I regretted it. Why didn’t I stay and help her? She was alone and must have felt unwell, although she didn’t look poorly. Wouldn’t helping this old woman have been much more worthwhile than all the other things I did, like writing a manuscript?

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

Illness experience VII: Bits and pieces, here and there

I remember my first night at the hospital. Thud, thud, thud ... footsteps in the middle of the night, when I was drowsy. I couldn’t see the faces, though. Sometimes, those quick steps came to the foot end of the bed and then turned back. Sometimes, they stopped there for a very brief moment, and then moved away. Sometimes, they didn't come as close. They paused a few steps short of my bed, as if the nurse had come to think about something, and then, when still a couple of steps away from the bed, was satisfied with whatever was on her mind when she started that trip. Then, the sound of footsteps faded away again.

It happened so very often. I kept thinking that they must be coming to check on me, to make sure they had completed all of the required tasks. It was interesting to notice this as a patient. I was not alarmed. For a moment, I considered whether it might have been a ghost or something. I was not afraid. I could perfectly picture the nurses’ actions and motions in my head. They were all too familiar. I had done that lots and lots of times. But I thought to myself, what about older or more superstitious people. Would they ever wonder about these footsteps in the middle of the night? Funny enough, I was never woken by the thud, thud thuds again after surgery. Mostly, I slept through the night, except when it was time to have my blood pressure taken.

I was truly annoyed by the four-hourly blood pressure monitoring. Wasn't it obvious, after the second day, that I was perfectly fine? These actions did not make good sense to me. The Dinamap is also terrible as a BP machine. I never realized it could make people so uncomfortable. It blows the pressure high and then takes a long time for the air and pressure to be released, so your arm is under pressure for a long time. I couldn't imagine how patients feel who need to have their BP taken hourly or half-hourly.

Also, I was not so impressed by the nurses. Other than those who came to visit because they had been asked to by an acquaintance, very few nurses came by to see how I was doing. Well, they did ask how I was doing, but that was just checking on me, and I could feel no caring. The cleaning staff and health care aides were so much better—more caring—than people in the health care business. When they spoke, they were polite, they made small talk and showed that they cared. But not the students or staff nurses. The nurses were merely doing their jobs. I thought the health care aides were excellent healthcare aides, but the nursing staff was so-so. Throughout my four days of being hospitalized, I could have been cared for without nurses, but I am only speaking on behalf of myself as a relatively well and mobile patient. I do not know about other patients on the unit who required a lot of nursing care.

While at the hospital, I noticed that there was too much talk about how the public health system was abused by the general public. This was not my experience. When I was with Amanda in the seating area, waiting to be admitted for surgery, it became clear that lots of ordinary looking people like us—not particularly well dressed, and seemingly not very rich—were using private services, such as this hospital. It showed me that many people would pay out of their own pocket to get better care if they could.

As I went through various facets of the private health care system, I learnt that things sped up because I was paying for private service. It took just over two weeks for me to get diagnosed, get a second opinion, complete further investigation, choose a surgeon, fix a day and book my operation-room time slot. I felt somewhat uncomfortable because I was aware that many people cannot afford the luxury of faster service. I came to doubt my former notion that those who can afford private services still abuse the public sector.

Another thing that made a deep impression on me was Sister Woo's direct instructions about what I should and should not do to take care of myself. Her practical tips helped me a lot. Since I do not usually teach basic nursing, I found myself comforted by these practical tips and the direct approach ordinary people take to care for one another. I tend to offer advice but leave it up to the person whether to take it. Sister Woo helped me understand that, sometimes, it is also helpful to give direct advice. It is at least comforting, even though not always useful.

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