Support

Julie Burnett
BA (Hons), BSW, MSW, RSW
Oncology Social Worker, Toronto Ontario
Lung Cancer Canada Volunteer Writer and Presenter

Communicating About Cancer
“In terms of your emotional and social well-being, communication is an important factor in how you cope with your illness, treatment and recovery.”
-Canadian Association of Nurses in Oncology

“In terms of your emotional and social well-being, communication is an important factor in how you cope with your illness, treatment and recovery.” -Canadian Association of Nurses in Oncology For some, communication with family and close friends at the best of times can be taxing. For others, communication comes easily. Historic patterns of communication will likely influence how and with whom you speak about lung cancer. However, there is no one prescribed way to discuss your illness with others.

While some may choose to speak only with close family members and friends, others may tell everyone with whom they socialize or work. Despite these different choices, there is one common principle that aids communication – to be as open and honest as possible, no matter whom you tell. Without openness and honesty, your friends and family may fill in the informational gaps themselves, sometimes erroneously, and may be left to imagine the worst.

This point is especially true for young children who have little experience in understanding and dealing with illness. In the absence of information, young people often suspect that something is wrong anyway and may even blame themselves. Social workers are a good resource for parents on age-appropriate communication strategies for young people, and some specialized programs exist to help children and teens understand cancer and answer their questions.

It is common for the patient or caregiver to be the one to initiate discussion about the illness. Those around you often fear invading your personal space and are hesitant about what to ask or say. Be prepared to be the conversation starter. For those who do tell friends, neighbours and colleagues, they often receive compassion, emotional support and offers to help with daily chores and tasks that can become challenging, especially during treatment. This can also help reduce the sense of isolation that many patients and families feel.

Once again, there is no prescribed way to talk about lung cancer with others. Regardless of who you talk to, a key point is to be as open and honest as possible. Use your experience and judgment and, when in doubt, professionals and specialized programs can help. As a starting point, you might ask for an appointment with the oncology social worker where you are receiving treatment. The social worker can help directly, and can also let you know about local programs and services.

Taking Care of Our Caregivers: Identifying and coping with Caregiver stress
“I have the right to take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.” -Saskatoon Caregiver Information Centre

There has been very little research specifically about caregiving with respect to lung cancer, so the pool of information from which to draw is general to caregiving in cancer. The literature indicates significant challenges for caregivers which, in extreme cases, can result in total emotional burnout and adverse health effects. The following symptoms and strategies have been adapted from the Saskatoon Caregiver Information Centre:

• Symptoms of caregiver stress may include: 
• feelings of depression and helplessness
• severe and constant fatigue
• decrease in work production
• withdrawal from social contacts 
•  increase in use of stimulants and alcohol
• increasing fear of death
• change in eating and sleeping patterns. 

Strategies to lessen caregiver stress or prevent burnout include:

• consult with professionals, such as a Social Worker, to explore issues about caring for the patient and symptoms of caregiver fatigue
• seek out others who are caring for a lung cancer patient for mutual support,
• understanding and the exchange of coping strategies
• exercise daily and maintain a healthy diet
• set aside time, each day if possible, for yourself to do whatever you find enjoyable and refreshing
• stay involved in usual activities to the greatest extent possible (e.g., hobbies and social activities that were enjoyed before the diagnosis)
• decrease in work production 
• withdrawal from social contacts share the caregiving responsibilities with other caregivers and regularly vary the focus of caregiving responsibilities. 

There is no way to avoid the fact that caring for a lung cancer patient is a difficult and stressful experience. The good news is that caregiver stress can be managed and burnout can often be avoided by caregivers' attention to their own needs and strategies for self-care.

It is important to remember that caregivers who take care of themselves are often better able to care for their loved one.

Reactions To A New Diagnosis
Lung cancer is more than a medical crisis - it can be an emotional crisis as well.

If you have been diagnosed with lung cancer, you have probably experienced a variety of feelings including shock, denial, blame, guilt, depression, anger, loneliness and fear. These, and other feelings, are normal. As individual as you are, so is the manner in which you will react to a new diagnosis. There is no “one way” to respond to your diagnosis. Listed below are some of the most common feelings following a new lung cancer diagnosis. This list is not exhaustive and it is possible that you have experienced other feelings too.

A new lung cancer diagnosis can often leave people overwhelmed with new feelings and responses. It is helpful to seek as much information about your disease as possible in order for you to better understand your diagnosis, treatment and prognosis. Reaching out to others and sharing your feelings can help too.

Your feelings and reactions can often change with or without warning. 2 Your family and friends may experience some of thse feelings too, but not necessarily at the same time. Opening up a conversation about them, even though it might be difficult, may be beneficial to everyone.

1 Cancer Research UK (2002). www.cancerhelp.org.uk “Living with Cancer: Your feelings.”
2 U.S. National Cancer Institute (2005). www.cancer.gov “Taking Time; Support for People with Cancer and the People Who Care About Them. “