Cancer patients’ quality of life was the topic at a recent symposium organized by the Children’s Cancer Foundation.
By Annie Wong
On Feb. 11, Children’s Cancer Foundation celebrated their 20th anniversary with a symposium at Furama Riverfront Hotel. During the symposium graced by Mr. Gan Kim Yong, Minister for Health, various issues regarding helping children with cancer or those with family members facing life-threatening illness are brought up.
Brad Zebrack, an associate professor with the University of Michigan, also a cancer survivor, shared the struggles a cancer patient goes through, from discovery to recovery. Above all, he emphasizes the need for cancer patients to learn how to thrive throughout their illness.
He noted that there are four stages a patient may go through. Firstly, they may succumb to the disease physically, emotionally and/or spiritually. Next, they will proceed to the surviving stage where they can function, but at reduced levels. During recovering, they are regaining balance, building resilience and normalcy. In the last stage, they can thrive, live life better than before.
Be An Advocate
Zebrack noted that in order to improve patients’ quality of life, it is important for them to be advocates. He felt that the patient must be an advocate for himself, to learn to find information and emotional support that he needs. Patients, especially child patients, must learn to gain some form of control so they will not be overwhelmed—they should speak to the doctor and decipher the information they find on the Internet.
Two important things to note for patients and their care-givers are that firstly, no question is a stupid question. If they are unsure of anything, they should just ask the doctor. Secondly, it is important to find a mentor who has gone through what they are going through to provide suitable advice.
Apart from learning to take action and responsibility for his own survival, a patient can also strive to advocate for others, or take on the role as a mentor and help others walk on the path they have gone through. By being an advocate, the patient enjoys a feeling of regaining control in their own lives. It also gives him the confidence to face the challenges that seem insurmountable. This improves his quality of life and makes him feel hopeful instead of helpless.
While it is true that cancer patients should face their illness with a positive outlook, Zebrack reminded the audiences that it is also normal for them to face struggles. Patients may start to question their sense of self and the meaning of cancer: “Why is this happening to me?”, “Why did my body betray me?” or “Why is my body different from my friends’?”
At the same time, they will also worry about their health, the changes in their bodies and their relationships with family and friends. For children, the social pressure they receive from the peers may be overwhelming and they may fear rejection.
Very often, the things said by concerned friends and family members may even discourage them. Zebrack gave examples as to how patients can make sense of the things said.
“You must have a positive attitude.” Very often, well-meaning friends may remind them to be positive and they wonder how they can remain positive after taking chemotherapy. They don’t even have the strength to eat or go to the toilet! However, having a positive attitude does not mean that they have to be happy all the time. It just means they feel all right with the way they are at that moment, that they count the little successes of what they can do, even in their weak moments.
“So how are you … really?” This question often makes cancer patients feel as they are hiding something even though they are not. The truth is, people say this because they are also struggling to relate to the patient. They do not know how the patient is feeling.
“I know how you feel.” Even though friends and family members try to empathize with patients, they do not know how they really feel, the pain they go through, their struggles and fears. Thus it is important to befriend other patients or survivors who can act as mentors to them.
In a workshop held after the keynote speech, Zebrack gave the attendees an insight into the struggles faced by children whose care-giver suffers from cancer.
When the care-giver—such as a parent—suffers from cancer, the children are severely affected. The older children will usually have to take on a bigger role to look after the younger ones and can usually understand the situation better. They would therefore tend to feel more pressured by the issue at hand. Having more responsibilities at home, they would also have less time for their friends and this may lead to social or interpersonal changes or even low self-esteem.
With all the attention shifted to the patient, children may also feel neglected—this could lead to a sudden change in mood and their academic results may also suffer. In addition, these emotional changes they are facing tend to be beyond what they can handle, and mental problems like anxiety, fear of death, depression or anger problems may follow. Sometimes, this may even lead to somatic symptoms like loss of appetite and stomachaches.
However, children would often try to keep positive or look for distractions like taking on more activities or going out with their friends; they may also try to maintain normality, thus signs of distress are not easily detectable. Parents should take note of any changes and maintain an open and clear communication with the children in order to help them cope. They can do so by either preparing the children for any potential changes and loss arising from the parent’s illness, or by correcting distorted explanations of their parent’s illness.
Zebrack wrapped up the session with a quote from Betsy Clark, the former president of the National Coalition for Cancer Survivorship: “Persons diagnosed with cancer must manage the enduring and complex ways in which cancer transforms the self and everyday life.” Should one be able to manage cancer, one would be able to improve their quality of life. As a cancer survivor once said, “While the cancer is not something I would want to do again, it is not something I would want to erase from my life. It has taken some stuff away, but what it has added, has completely overcome anything that might have been deducted.”