I thought having cancer hadn’t changed me much. But, as time goes by, I notice that, indeed, I have changed, although in less conspicuous ways.
Symptom 1: Becoming sentimental
I have become more sentimental. I notice that I am very much into taking pictures nowadays, much more so than before. I carry my camera around a lot. As time goes by, I realize that it is because I try to capture glimpses of my life, knowing that every small chunk of time is but a fleeting moment. These fleeting moments will, one day, add up together to make my whole life.
Symptom 2: Becoming more sociable
I have become more geared toward having parties and social gatherings. In the past, my project teams would just meet to discuss things. I rarely called for parties and get-togethers. But now I do. I used to enjoy time with myself—doing household chores, listening to music, reading books and magazines, watching television. Now I make more effort to be with others, and I make mental notes to remind myself how nice it is to be around people.
Symptom 3: Becoming more forgiving
Things students do that irritated me in the past are no longer as offensive. For example, I can’t tolerate it when students keep chatting while someone else is speaking, be it a guest speaker, other students or me. I consider this to be very rude. These days, however, when students still happily chat away in class, I am not as mad. I still ask them to please take turns to speak—between the speaker and audience, that is—but I don’t get upset like I used to.
I would say that these changes are for the better. And they are changes I did not quite expect. They must be linked to a reframing of my perspective on life after having cancer.
I hope they stay.
For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International (STTI).
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
04 February 2011
15 October 2010
Life after cancer
Readers of my blog may wonder what I am up to in my life after cancer. Well, life goes on as usual.When I first went back to work, I felt fine. I was able to keep my cool and maintain a fairly good balance between work and rest. As time goes by, I find myself increasingly drawn to more and more work, and needing to stay up later and later into the night. This is not a good sign. I am still trying to find a new and healthy balance.
One important impact of cancer on my life is that I have started to exercise regularly. No, not exercising three times a week for half an hour each time, but hiking weekly. Above the village behind the housing estate where I live, there is a path that, after a 45-minute walk up and down the hill, converges with the MacLehose Trail, a country-park hiking trail. Every Saturday or Sunday, I make an effort to hike this path. Sometimes, when I don’t feel like going, I tell myself that it is a medicine that I must take, given the Hong Kong-based evidence that shows a positive association between exercise (or lack of it) and occurrence of breast cancer. Sometimes, when I miss my weekend hike, I try to make it up in the middle of the following week.
Those who hike will know that it is not easy to find a hiking partner. Everyone walks at a different tempo, some fast, some slow and some in-between. So I usually hike by myself. Hiking on my home trail—I call it my home trail now—has opened my eyes to the world of nature. I have seen how a snail flips its body trying to shake a bug from its shell. I have seen wild pigs running down the hill, snakes slither across a path and into the grass again, and sometimes, more alarmingly, wild dogs. I always take a hiking stick with me, not for hiking, but to frighten away menacing dogs. I have become much more aware that I am close to nature, observing different flowers that blossom at different times of the year, or fruit trees that I never noticed before. Hong Kong has 7 million people, and it is hard to find a spot where you don’t run into anyone. But, sometimes, I do not run into anyone up on the hill, and it is as if I have all that nature to myself. Such beauty and tranquility!
Occasionally, when I am alone, I ask myself what cancer means to me. There is also a slight fear that I may have forgotten something important about surviving cancer. Sometimes I feel I don’t know what the important lesson was, while, at other times, I believe the key lesson is that I should remember that a good life is about loving and forgiving. Essentially, life goes on as usual after cancer. And that is already very comforting.
For Reflections on Nursing Leadership (RNL), published by the Honor Society of Nursing, Sigma Theta Tau International.
26 August 2010
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.
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.
17 August 2010
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.
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.
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.
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