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.
21 July 2010
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.
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.
07 July 2010
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.
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.
23 June 2010
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.
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.
15 June 2010
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.
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.
28 May 2010
Illness experience I: A new kind of pain sensation
As a health care professional and going through life year by year, I thought I knew pain. But then, after my magnetic resonance imaging, I realized I didn't know pain as I thought I did.
They injected dye into an artery, which is just like drawing blood or putting in an infusion—nothing serious. After they finished my imaging and had taken out the arterial catheter, I had to press the insertion site for five minutes. The site then looked a bit swollen, reddish and was more “painful” than I expected (not really hurting badly, but hurting for sure). It was a strange feeling that I couldn't describe. Because it was a dye and it was my artery, I was wary. Aware of the possibility of adverse events such as allergy or shock, I pressed the bell and called for the technician. He told me he noticed nothing unusual and that my wrist was just like normal. So I had reported it. Just in case anything happened, I had mentioned it. I still felt a bit uncomfortable at the insertion site when I went home. The pain sensation was mild, but it was there. It was a kind of pain I had not experienced before.
Traveling the same bus route, I went back to my office and picked up my mammograms and ultrasound records to take them to the hospital. I thus had plenty of time to take in the new sensation and look at my wrist. After an hour or so, the redness had gone down. So had the mild swelling, as well as the mild pain and discomfort.
If only the technician had known about this kind of pain, if only he had been more observant, he wouldn't have been so adamant about seeing nothing abnormal, because I was 100 percent positive my wrist did look different than normal, at least a little. If only he had known, he would also have known how to comfort and reassure a patient.
I think to myself that, now that I know about a new kind of pain experience, I will be able to reassure my patients in the future. I know now, from personal experience. And I wonder what kinds of pain I will experience from my surgery. I am going to learn about new things. I thought of the moment when the nurse tried to insert an intravenous catheter into my artery. I was really apprehensive. It hurt more when she was about to insert it than when she was actually doing it. Apprehension makes it hurt more. I am handling everything well now, but I wonder how I will do when I go into the operating room.
Well, one thing is for sure. I will be a better health professional after my own experience as a patient. And be assured that I am not afraid. I am not.
For Reflections on Nursing Leadership, published by the Honor Society of Nursing, Sigma Theta Tau International.
They injected dye into an artery, which is just like drawing blood or putting in an infusion—nothing serious. After they finished my imaging and had taken out the arterial catheter, I had to press the insertion site for five minutes. The site then looked a bit swollen, reddish and was more “painful” than I expected (not really hurting badly, but hurting for sure). It was a strange feeling that I couldn't describe. Because it was a dye and it was my artery, I was wary. Aware of the possibility of adverse events such as allergy or shock, I pressed the bell and called for the technician. He told me he noticed nothing unusual and that my wrist was just like normal. So I had reported it. Just in case anything happened, I had mentioned it. I still felt a bit uncomfortable at the insertion site when I went home. The pain sensation was mild, but it was there. It was a kind of pain I had not experienced before.
Traveling the same bus route, I went back to my office and picked up my mammograms and ultrasound records to take them to the hospital. I thus had plenty of time to take in the new sensation and look at my wrist. After an hour or so, the redness had gone down. So had the mild swelling, as well as the mild pain and discomfort.
If only the technician had known about this kind of pain, if only he had been more observant, he wouldn't have been so adamant about seeing nothing abnormal, because I was 100 percent positive my wrist did look different than normal, at least a little. If only he had known, he would also have known how to comfort and reassure a patient.
I think to myself that, now that I know about a new kind of pain experience, I will be able to reassure my patients in the future. I know now, from personal experience. And I wonder what kinds of pain I will experience from my surgery. I am going to learn about new things. I thought of the moment when the nurse tried to insert an intravenous catheter into my artery. I was really apprehensive. It hurt more when she was about to insert it than when she was actually doing it. Apprehension makes it hurt more. I am handling everything well now, but I wonder how I will do when I go into the operating room.
Well, one thing is for sure. I will be a better health professional after my own experience as a patient. And be assured that I am not afraid. I am not.
For Reflections on Nursing Leadership, published by the Honor Society of Nursing, Sigma Theta Tau International.
27 May 2010
Foreword
When the editor of Reflections on Nursing Leadership asked me to write a blog, I was hesitant to say yes but, eventually, I agreed, hoping to foster sharing of thoughts and experiences in health and nursing across continents. The first thing I would like to share is my experience as a cancer patient. I was diagnosed as having stage I mucinous carcinoma on 17 September 2009 and subsequently went through surgery and radiotherapy. During that period, I shared bits and pieces of my thoughts as a nurse-turned-patient with my family and close friends. My illness experience has certainly taught me some important things in my life. Because these thoughts were just for sharing with friends and family, there are no big lessons or dramas. Nevertheless, I would humbly like to share them with you.
For Reflections on Nursing Leadership, published by the Honor Society of Nursing, Sigma Theta Tau International.
For Reflections on Nursing Leadership, published by the Honor Society of Nursing, Sigma Theta Tau International.
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