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.
Showing posts with label radiotherapy. Show all posts
Showing posts with label radiotherapy. Show all posts
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.
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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