Living With Cancer (September 6, 2009)
Living with cancer often involves a personal search for value of life within the cancer experience. This involves a deepening of personal relationship, a spiritual journey or a general re-evaluation of priorities and aspirations.
Cancer is generally viewed by the public as an incurable sickness. The use of military metaphors, such as “fight” against cancer, suggests that cancer is an enemy to be fought. Within this military vision of cancer, a patient is either cast as a hero or a victim.
In recent personal stories on emergence of cancer, the true nature of the cancer experience is presented as more subtle and complex. The terminology has been changed recently. Examples of the recent terminology used are “struggle” and “survival”. Many institutions look at cancer as a challenge to be overcome rather than a war to fight.
With the changes in terminology, many organizations and institutions begin to emphasize on “living with cancer” rather than defeating cancer.
This acknowledges the reality that although not all cancers are curable, much can be done to relieve cancer patients from the effects of cancer.
Doctors or patients' family can focus on the needs of cancer patients at different stages of their cancer journey.
Learning to understand the personal experiences of cancer patients would help health professionals and patients’ family to work effectively with patients and to improve cancer care services.
In order to provide more valuable care and services to cancer patients, we have carried out research in the forms of questionnaires and interviews.
Talking, caring and understand cancer patients has become our way of life with them. As a result, patients will share with us frankly on how they see themselves as cancer patients.
Maria Theresa Guarino, a lady who possesses a positive attitude towards life. She is a Pilipino. I met her at Baguio City during a medical conference. She used to be a nurse before she got married. She is blessed with two daughters.
She told me that after being diagnosed with ovarian cancer, she remained calm. She sought advice from doctors and proceeded with treatment. She went through a hard and painful time of chemotherapy. She had a total hysterectomy to remove the tumor in one of the ovaries in the General Hospital in Manila.
A year later, she came to Guangzhou and was admitted into our hospital; she came to China because she suffered a relapse.
In her email, she told me that she was looking forward to continue her treatment in our hospital. She believed that she can co-exist peacefully with her cancer.
She wrote, “I do feel very positive; I don’t think cancer will come back; even if it comes back, I’ll challenge it again. I am very positive, I do feel very happy. I feel happier than before. I don’t complain about things like bills to pay or because it’s hot or because it’s raining. I do feel much happier. And I feel much healthier as well. I don’t know why but I feel much stronger than before.”
Maria told me, “Esther, I have planned my journey of living with cancer. I know each new day is meaningful and priceless to me and my family. I must understand, adapt and plan my journey. I know my life plan is being disrupted by my disease. My eldest daughter is studying in the Ateneo de Manila University. I have one more girl aged nine. Because of them, I quit my job. From now on, I have to reschedule my life plan; I want to live my life like before.”
We came to understand how Maria has adjusted her life perspective. She has learned to accept a degree of uncertainty into her life. We strongly believe that it is important to understand their way of living with cancer. It can help us in providing comfort to them.
We learn to gain insights into how cancer patients maintain continuity within their lives in the face of illness. We find that it is useful to understand the overlapping and competing demands on individuals and families as a result of suffering from cancer.
One of the ways to understand the personal experiences of cancer patients is to view these experiences as a series of overlapping calendars. Cancer patient’s calendar can be divided into four series - the life calendar, the personal calendar, the illness calendar and the treatment calendar.
The life calendar represents how they see themselves over the time in terms of relationship and their life events. This can be the matters related to their births, marriage, and deaths. It also encompasses their personal achievements at work and at home, their life goals and future plans.
The personal calendar is the time table of patient’s daily life and including the things they do. The personal calendar is the rhythm of their private life, bound by their sense of themselves and personal responsibilities. It can be their work plan, their dancing classes, their swimming lessons and many others outdoor and indoor programs.
The sickness calendar started with the first effect and awareness of the cancer in them. It includes the experience of symptoms and side effects, investigations, and results, and the continuous changes in life and lifestyle in response to the effects of illness. It is then followed by the development and understanding of diagnosis and prognosis and the nature of treatment.
The treatment calendar begins with the stages of the demands for combination of both conventional and modern treatment of cancer. It includes surgery, chemotherapy, radiotherapy, and advance cancer treatment such as cryosurgery, immunotherapy, photo dynamic therapy and other alternative treatment. The treatment calendar is usually managed by the medical professionals. It is often a series of unpredictable and unforeseen events, including complications.
From our experience, we had noticed one very important point. We can see that patients were striving for their personal aspirations, stability and personal control.
In order to provide good and effective support, patient’s family members has to understand the effects of the illness on daily life (the illness calendar) and the demands of particular treatments regimes (the treatment calendar), This is because the sickness may come to dominate the patient’s life and that of their own family.
After a person becomes a patient, they will enter into a new world of their experience with cancer. They have no choice but to learn to conquer, endure and live with cancer.
Therefore, it is always advisable for the cancer patient to live their life as normal as they can. If the patient is well enough, they can keep up with their daily routine. This includes to work, spending time with family and friends, taking part in hobbies and even going on trips.
In the planning of the calendar, it is useful for the cancer patient to use these questions to think about how they want to spend their time.
Many patients discovered that they have more energy when they take part in physical activities such as swimming, walking, yoga, and biking. They found that these types of activities help them keep strong and make them feel good.
Even if patient has never done physical activities before, they can start now. They can choose something they think they like to do. They can do some exercises even if they have to stay in bed.
Some people with cancer often want to get back to work. Their jobs not only give them an income but also a sense of routine. Work helps them feel good about themselves.
However, certain group of people might find that their boss and co-workers treat them differently than they did before they had cancer. In order to overcome the doubt and nervousness, they must learn to understand that their bosses or co-workers may say nothing because they don't know what to say and don't want to hurt their feelings.
I was told by a patient from Kuala Lumpur, he told me that he was nervous about going back to work. He did not know how to tell his supervisor and co-workers about his condition. He told me that he knew his supervisor and co-workers would be supportive, but he was afraid that they would think he was no longer able to do as good a job as he used to.
Sometimes people with cancer can try new, fun things that they have never done before. For instance, they may have always wanted to ride in a hot air balloon or go deep-sea fishing? A young man with cancer put it this way,
Cancer patients may find it helpful to look beyond their treatment and think about what they want to do when they feel well again. Many patients find it helpful to set goals and well plan their personal calendar. Setting goals gives them something to think about and work toward.
Goals and calendar can also help patients focus on what they want to achieve in their weekly plan, yearly plan, and into the future. As one Singaporean with cancer said to me, "I decided I would travel to Europe when my therapy was over. I used my treatment time to research the countries I wanted to visit. I bought a new camera and figured out how to use it. I even brushed up on my French!"
Goals and calendar can also help the patients get through the hard times. In fact, many cancer patients had done much better than our doctor expected because they lived their life with a positive attitude.
It is wise for people with cancer to "put their house in order." Think about making a will and talk about end-of-life choices with their loved ones. They may also want to put their photos into albums, write down the family history, and sort through some of the things they own.
“Putting their house in order” is not the same as giving up. In fact, it is a way that people with cancer can live each day to the fullest and think about the future. Many of them are living each day to the fullest by staying involved in the duties and pleasures of their daily life; and making plans for the future.
Through the process of communicating and interacting with cancer patients, I have learned to understand the meaning of living with cancer. Living with cancer is not only means looking at death but also how to live the rest of our life regardless of whether it is long or short.
Cancer is generally viewed by the public as an incurable sickness. The use of military metaphors, such as “fight” against cancer, suggests that cancer is an enemy to be fought. Within this military vision of cancer, a patient is either cast as a hero or a victim.
In recent personal stories on emergence of cancer, the true nature of the cancer experience is presented as more subtle and complex. The terminology has been changed recently. Examples of the recent terminology used are “struggle” and “survival”. Many institutions look at cancer as a challenge to be overcome rather than a war to fight.
With the changes in terminology, many organizations and institutions begin to emphasize on “living with cancer” rather than defeating cancer.
This acknowledges the reality that although not all cancers are curable, much can be done to relieve cancer patients from the effects of cancer.
Doctors or patients' family can focus on the needs of cancer patients at different stages of their cancer journey.
Learning to understand the personal experiences of cancer patients would help health professionals and patients’ family to work effectively with patients and to improve cancer care services.
In order to provide more valuable care and services to cancer patients, we have carried out research in the forms of questionnaires and interviews.
Talking, caring and understand cancer patients has become our way of life with them. As a result, patients will share with us frankly on how they see themselves as cancer patients.
Maria Theresa Guarino, a lady who possesses a positive attitude towards life. She is a Pilipino. I met her at Baguio City during a medical conference. She used to be a nurse before she got married. She is blessed with two daughters.
She told me that after being diagnosed with ovarian cancer, she remained calm. She sought advice from doctors and proceeded with treatment. She went through a hard and painful time of chemotherapy. She had a total hysterectomy to remove the tumor in one of the ovaries in the General Hospital in Manila.
A year later, she came to Guangzhou and was admitted into our hospital; she came to China because she suffered a relapse.
In her email, she told me that she was looking forward to continue her treatment in our hospital. She believed that she can co-exist peacefully with her cancer.
She wrote, “I do feel very positive; I don’t think cancer will come back; even if it comes back, I’ll challenge it again. I am very positive, I do feel very happy. I feel happier than before. I don’t complain about things like bills to pay or because it’s hot or because it’s raining. I do feel much happier. And I feel much healthier as well. I don’t know why but I feel much stronger than before.”
Maria told me, “Esther, I have planned my journey of living with cancer. I know each new day is meaningful and priceless to me and my family. I must understand, adapt and plan my journey. I know my life plan is being disrupted by my disease. My eldest daughter is studying in the Ateneo de Manila University. I have one more girl aged nine. Because of them, I quit my job. From now on, I have to reschedule my life plan; I want to live my life like before.”
We came to understand how Maria has adjusted her life perspective. She has learned to accept a degree of uncertainty into her life. We strongly believe that it is important to understand their way of living with cancer. It can help us in providing comfort to them.
We learn to gain insights into how cancer patients maintain continuity within their lives in the face of illness. We find that it is useful to understand the overlapping and competing demands on individuals and families as a result of suffering from cancer.
One of the ways to understand the personal experiences of cancer patients is to view these experiences as a series of overlapping calendars. Cancer patient’s calendar can be divided into four series - the life calendar, the personal calendar, the illness calendar and the treatment calendar.
The life calendar represents how they see themselves over the time in terms of relationship and their life events. This can be the matters related to their births, marriage, and deaths. It also encompasses their personal achievements at work and at home, their life goals and future plans.
The personal calendar is the time table of patient’s daily life and including the things they do. The personal calendar is the rhythm of their private life, bound by their sense of themselves and personal responsibilities. It can be their work plan, their dancing classes, their swimming lessons and many others outdoor and indoor programs.
The sickness calendar started with the first effect and awareness of the cancer in them. It includes the experience of symptoms and side effects, investigations, and results, and the continuous changes in life and lifestyle in response to the effects of illness. It is then followed by the development and understanding of diagnosis and prognosis and the nature of treatment.
The treatment calendar begins with the stages of the demands for combination of both conventional and modern treatment of cancer. It includes surgery, chemotherapy, radiotherapy, and advance cancer treatment such as cryosurgery, immunotherapy, photo dynamic therapy and other alternative treatment. The treatment calendar is usually managed by the medical professionals. It is often a series of unpredictable and unforeseen events, including complications.
From our experience, we had noticed one very important point. We can see that patients were striving for their personal aspirations, stability and personal control.
In order to provide good and effective support, patient’s family members has to understand the effects of the illness on daily life (the illness calendar) and the demands of particular treatments regimes (the treatment calendar), This is because the sickness may come to dominate the patient’s life and that of their own family.
After a person becomes a patient, they will enter into a new world of their experience with cancer. They have no choice but to learn to conquer, endure and live with cancer.
Therefore, it is always advisable for the cancer patient to live their life as normal as they can. If the patient is well enough, they can keep up with their daily routine. This includes to work, spending time with family and friends, taking part in hobbies and even going on trips.
In the planning of the calendar, it is useful for the cancer patient to use these questions to think about how they want to spend their time.
- How do I want to spend my time?
- What makes me feel happy?
- What types of things do I enjoy the most?
- What types of things do I like the least?
- Who do I like to be with?
- Who makes me laugh?
- Is there something I want to do that I've never tried?
Many patients discovered that they have more energy when they take part in physical activities such as swimming, walking, yoga, and biking. They found that these types of activities help them keep strong and make them feel good.
Even if patient has never done physical activities before, they can start now. They can choose something they think they like to do. They can do some exercises even if they have to stay in bed.
Some people with cancer often want to get back to work. Their jobs not only give them an income but also a sense of routine. Work helps them feel good about themselves.
However, certain group of people might find that their boss and co-workers treat them differently than they did before they had cancer. In order to overcome the doubt and nervousness, they must learn to understand that their bosses or co-workers may say nothing because they don't know what to say and don't want to hurt their feelings.
I was told by a patient from Kuala Lumpur, he told me that he was nervous about going back to work. He did not know how to tell his supervisor and co-workers about his condition. He told me that he knew his supervisor and co-workers would be supportive, but he was afraid that they would think he was no longer able to do as good a job as he used to.
Sometimes people with cancer can try new, fun things that they have never done before. For instance, they may have always wanted to ride in a hot air balloon or go deep-sea fishing? A young man with cancer put it this way,
"Often we patients fill up our lives with meaningful activities and neglect the frivolous outlets that keep us sane."
Cancer patients may find it helpful to look beyond their treatment and think about what they want to do when they feel well again. Many patients find it helpful to set goals and well plan their personal calendar. Setting goals gives them something to think about and work toward.
Goals and calendar can also help patients focus on what they want to achieve in their weekly plan, yearly plan, and into the future. As one Singaporean with cancer said to me, "I decided I would travel to Europe when my therapy was over. I used my treatment time to research the countries I wanted to visit. I bought a new camera and figured out how to use it. I even brushed up on my French!"
Goals and calendar can also help the patients get through the hard times. In fact, many cancer patients had done much better than our doctor expected because they lived their life with a positive attitude.
It is wise for people with cancer to "put their house in order." Think about making a will and talk about end-of-life choices with their loved ones. They may also want to put their photos into albums, write down the family history, and sort through some of the things they own.
“Putting their house in order” is not the same as giving up. In fact, it is a way that people with cancer can live each day to the fullest and think about the future. Many of them are living each day to the fullest by staying involved in the duties and pleasures of their daily life; and making plans for the future.
Through the process of communicating and interacting with cancer patients, I have learned to understand the meaning of living with cancer. Living with cancer is not only means looking at death but also how to live the rest of our life regardless of whether it is long or short.
0 Response to "Living With Cancer (September 6, 2009)"