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.

Illness experience VI: Journeying through treatment, amongst other things

My last journal entry is dated October 4, the afternoon before I was admitted into St. Teresa's Hospital. And this is 10 days later.

I have had a lot of thoughts, but no time to consolidate them. Life does not wait for us to get settled. It moves on, regardless of the circumstances.

While I was at the hospital, Sister Woo once asked me how my illness has changed the way I look at life. It was a good question, because, in a lot of ways, I don't think it has had such a profound impact as changing my life. But then her question made me think about things a bit more.

In the hospital, it is relatively easy to stay focused on the metaphysical side of things, to tell yourself that life has many dimensions and that work should be just one of many, to let go of the unimportant matters in life and not be bothered by them, and so on and so forth. Coming back home, back “down to earth,” it is more difficult to stay ”spiritual.” There are repairs needed around the apartment. There is the need to stay connected with families and friends—they will call and you will call them. You also have to sort out what you are going to do next in terms of following up on your own health. Staying in the hospital is boring but singular in purpose. Staying home for recuperation is not necessarily so.

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

Illness experience V: Body as object

My post-surgery recovery has been uneventful. With help from people I know, I was able to see an oncologist on Oct. 14, only nine days after my operation. In the following week, I was able to be seen again—immediately—to tell the doctor of my decision on chemo (which I have decided against), and to have my radiotherapy (RT) planning session. Everything went smoothly, and I am to commence my RT tomorrow.

It has been interesting going through both the private and public health care systems as a “nurse-patient.” I keep thinking, nobody tells you much about your illness (except at the consultation, where you learn more). As a patient, besides what the doctor tells me, I would like to know about all of the relevant procedures. During my first visit to the oncology clinic (my first planning session), nobody told me much. The most explanation I got was during my consultation with the oncologist.

Other than for taking blood pressure, checking my body weight and organizing old films, I have hardly seen a nurse. No nurses, other than my friend Catharine, approached or talked to me, even during my first visit. A nurse was present when the oncologist was with me. What s/he did was to find out the date and time of upcoming health talks, and produce some leaflets about the side effects of drugs and RT for the oncologist to give me. That was pretty much it. Can we blame the public for not knowing us nurses?

I only met receptionists, health care aides, technicians and professionals “coolly,” if not coldly, doing their jobs, oblivious to the possible feelings that a patient may be experiencing. I am aware that I am one of the least worrisome cases, a nurse, knowing people here, coming for prophylactic treatment, having only stage 1 cancer, in relatively good health and coming to this particular hospital by choice. But what about the faces around me? How did those people feel? Were they in pain?

The receptionists were the worst. Because you don't know what they are talking about—go here or there, this window or that, etc., they think that you are stupid or a nuisance. Oh, yes, their expressions show. Because you have to give them a form, or schedule a day to come back, they make you feel that you are bothering them. Even if they don't do it on purpose, the way they do things or how they carry themselves has such an effect. And why are there so many receptionists in an office? I was truly amazed when I first saw that. I do not believe we need that many receptionists or clerical assistants in an office.

All you can do as a patient is wait till your name is called, and then do as you are told. Even the phony politeness at private services is more appealing than the cold, technical, impersonal approach of the public sector. Am I ever glad that I am a nurse, having worked in public hospitals for some years. I know about the places and the people, and I have a general idea of how things will be conducted. I am only sorry that nothing much has changed since I left “public services” in the early 90s.

After registration, my name was called. So I walked to the other end of the hall, only to have my body weight and height checked by a health care aide. Later, my name was called again, this time to go to a room, and I was asked to sit down and have my BP checked, again by an aide. Nurses were around, but just to ask me whether I had brought all the old films with me. The third time my name was called, I finally went to meet with my doctor.

My oncologist was alright. She took the time to explain all the essentials for me. I was, and still am, puzzled at the way things were arranged. It has been more than two decades since we talked about taking away functional nursing in Hong Kong. Still, what I saw was very functional (task-oriented) in our work engineering. I don't think it would involve a lot of extra work and time if the patient were only called once to meet with the nurse—to have his or her vitals done and, at the same time, have a brief consultation to have questions answered and a brief “tour” on likely procedures for patients coming for the first time.

By the way, there were two aides performing the weight and height measuring “service” and at least four when my BP was taken. Such a waste of resources, and no one outside in the waiting bay to talk to patients. So many resources, and yet not very good care.

Then came the planning session. I was taken to a room where a radiographer told me that all three members of their team today were men, and asked if I would mind. I responded that I was OK with that, but a moment later, before the actual shooting of X-rays, a female radiographer came into the room, noticed the composition of the team and said they should have a female chaperone. So they paged a female member of the staff to come and accompany me throughout.

I wasn't quite sure whether the female radiographer had taken pity on me or whether they wanted to be protected against accusations of sexually inappropriate behavior. But that probably didn't matter much. I wasn't aware of the female chaperone until I got up from the bed after all the X-rays were taken. Because she had a fairly heavy build and short hair, I could not decide whether the figure was a man or a woman while I was lying down, and she was standing a short distance from the bed so as not to interrupt the radiographers. So I never knew that a female was with me throughout.

How did I cope with three men stooping over me, making marks on my bare upper body and a narrow cast over my chest? I tried to rationalize and dissociate my being from my body. Just like the staff, who worked with a body and not a woman, I “participated” as an onlooker, viewing what others did to my body. I did not know how long the procedures lasted, at least a good 15 minutes, maybe more. The technicians said that they had four breast cases that day, as if that were a lot. So it must be quite a tedious and time-consuming process.

I was an object alright. Even though the bed I was lying on was 15-20 feet away from the door, I could still see the door that opened into the main waiting hall. People were passing by or sat outside, and staff inside did not pay much attention to whether that door was properly locked. Other staff came in and out, and the door was held open long enough for me to feel uncomfortable. Even though it was only afterward that I learnt that a female staff member had been there, it was still comforting to know she had been with me throughout.

I was then told to go back to the hallway outside the room, to await further instructions about what to do with my marks, subsequent appointments, etc. So I dutifully sat there as I had been told for half an hour or more. I couldn't remember exactly, as I was reading newspapers and talking with my sister Amanda.

The first technician whom I had met for this appointment saw us sitting there, but he said nothing. He was busy. But he later took pity on us and asked us what we were doing there. I said I was waiting to be given my next appointment. He asked whether the planning room technician had not given me the appointment and I said no. He was a bit surprised and said he had already given it to the planning-room people and would now get it for us. So we waited some more. After a short while, he came back to give me the appointment.

I wasn't upset. This is typical of government clinics and even hospital wards. As patients, we spend a lot of our time waiting.

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

Illness experience IV: Doctors are a different breed

I never realized how difficult it is for a patient to get a fuller picture about their condition and its required treatment. I get very frustrated with asking doctors questions. I simply cannot get the answers I want.

Why would doctors think that, because they know more, they can decide for others what has to be done? Ben, my brother, did all the information searches for me, and even prepared checklists and questions to ask, but when I was with the doctor, I could never get through those questions one by one. So I changed my strategy and thought of several broad categories in which I needed more information. I still wasn't very successful in getting answers.

The questions I don’t have answers to are about chemotherapy and hormonal therapy. Neither doctor seems really interested in talking about these aspects. Now that I reflect on it: Is it because they want only to address what is immediate, they don’t think that I am a good candidate for chemo, they don’t want increase their liability by talking too much or they don’t have time? I can’t fathom it. Is it just because they are doctors in Hong Kong? Is it the same everywhere?

I wonder how other people deal with the situation. Just let others make the decision? Put their lives into others’ hands? Now that I have experienced, from the perspective of a patient, the uniqueness of doctors as a different breed, I think of those who may not have a lot of education, may be less adept in problem solving or have limited access to information and communication technology. What about those people?

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

Illness experience III: What a patient needs is compassion

Being on the receiving end of health services, delivered by a long succession of health professionals, parahealth professionals and other unregulated staff, reinforces my belief that, among the many attributes of a nurse, caring is most important. Of course, knowledge, skills and techniques are important, but caring comes first. If we care enough, we will find the right thing to do. For example, Ben did all the searches for me, saving me tremendous time worrying about whether I had searched enough. Screening out all the useless information and pointing out the relevant to me was an enormous help. Thanks ever so much, Ben.

Coming back to compassion. If we care enough, we will be more thoughtful, will adopt the sick person’s perspective and relieve the burden on both the patient and his/her family. I travelled back and forth between the HK SH (another hospital) and my doctor’s offices just because the staff didn’t think of mentioning something to me. So I had to make that extra trip. As time-conscious as I am, I am surprised that I didn’t throw any temper tantrums at having my time wasted on avoidable activities. I think of caregivers who may be old and patients who may be too sick to travel back and forth. I also think of people who are not as mentally stable as I am. Imagine the pain and frustration they have to go through.

I used to think I was a very good nurse. Now I know I can be a better one. Adversities in life can be blessings in disguise. They make me more humane and accepting of other people’s weaknesses. I can now boldly state that “life is precious” and mean it.

Good health to all.

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

Illness experience II: A private experience?

I am an open person. Over time, I have grown out of my shyness and, most of the time, I speak my mind. But I am also a private person. I don't like people nosing into my business, just as I don't nose into other people’s affairs.

But as my illness experience accumulates—going for an appointment, getting a diagnosis—I realize that what is personal isn’t always private. I have to tell the receptionist about my condition and ask questions right in front of everyone in the waiting room. I have to ask my colleague to cover my class for me, as a favor, because I need to go for a doctor appointment. I have to call friends and ask for contacts. I have to call people—experts—I don’t know at all, no matter if they show warmth or coolness toward me. I have to tell event organizers I won’t be able to realize my speaking engagements. I have to apologize for missing meetings I have agreed to. And, I have to tell colleagues and team members about my situation when they are planning ahead for what needs to be done when and by whom. It ends up that, no matter how private I am, I have to tell people about my health problem. I don’t mind telling people; breast cancer is not shameful. But, when I am just trying to deal with it myself, I’m not prepared to share so much about myself with so many others. But illness leaves no room for shyness.

I now learn that illness is never a personal experience, not even a family experience. And I don’t like it when people ask me how I am, even though I have never told them anything. Grapevines spread very quickly. I tell myself I need to accept other people’s good intentions. My colleagues care about me. They want to let me know they care. Therefore, I must graciously accept and not push people away.

In illness, you have to come to terms with the fact that you can no longer entirely be your own boss.

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