Written by: Mary Brintnall-Peterson, Ph.D., MBP Consulting, LLC, Professor Emeritus, UW-Extension & Caregiver to her son Will.
As National Caregiving Month comes to a close, I’d like to end this month with a message of hope for not only caregivers but care recipients as well.
Whenever I talk with someone about my son’s cancer, the conversation eventually turns to the topic of hope. They tell me how important it is for my son, me and other family members to have hope. But exactly what is hope and how does it play into the cancer journey and healing process?
In my research for information on hope, I found that hope is basically a belief that a positive outcome lies ahead. People hope for different things at different times in their cancer journey. When cancer is diagnosed, there is hope the treatment will be successful and that the cancer will go into remission. Hope will be used through rough times, when treatment doesn’t work or other changes that happen during the cancer journey.
Holding on to Hope
Hope can be difficult to hold onto in the face of cancer so knowing how to create a sense of hope can lead to strength and confidence. Also understanding what hope is can be useful in creating hope. I found the work of Dr. Rick Boulay, Director of Gynecologic Oncology at Lehigh Valley Hospital in Allentown, Pennsylvania helpful. He shares that hope becomes an integral part of the cancer victim’s life. He believes hope comes from two sources-one being external sources such as a good CT scan or the blood work shows improvement, or the tumor has shrunk. External focused hope is commonly used at the beginning of the cancer journey because the patient is introduced to numerous medical treatments and the strong relationship created with their care team who they trust. External focused hope is comforting when cancer treatments are going well but when there are setbacks, the treatments fail, or the cancer comes back external focused hope fails them. These Individuals can become depressed, discouraged or feel alone and helpless.
The second type of hope is Internal focused and is hope that exists within the individual and comes from beliefs and/or a relationship with a higher being. Dr. Boulay, says these individuals believe all things work together for good. He hears statements like: “Sure, treat me with whatever you need to, but the overall plan rests with God,” or “If it is my time, it’s my time.” This type of hope can’t be measured but when they experience cancer low points these individuals often become more hopeful by using an inner strength and belief system some individuals become despondent, hopeless, faithless, and depressed.
Strategies to Create Hope
Cancer victims would be wise to develop both philosophies. Internal focused hope to guide them through the cancer journey and to help them through challenging times and external focused hope to manage the ups and downs of the cancer journey. There is no right or wrong path to finding hope. Hope comes easy for some, while others have difficulty holding onto hope during the difficult times. Here are some strategies for you to try to create hope:
- Sharing can increase one’s hope: Some find hope by talking with other people. One’s health care team can listen, answer questions, and provide suggestions for additional helpful resources. Sharing your cancer story with friends, co-workers and others provides support and can bring hope to the situation as they better understand your challenges, joys, hopes, and fears.
- Looking to the future: Some find hope by looking forward to planned events, like a child’s graduation from high school, a wedding or another type of gathering with friends and loved ones. Sometimes work projects or hobbies can provide a sense of purpose and help them look to the future.
- Comforting through beliefs: Many find hope through spirituality, religion or philosophy. These individuals believe that a higher power is helping them through the ups and downs of the cancer journey. These individuals often find talking with a faith-based leader or attending a spiritual support group helpful.
- Finding fact-based research: Some individuals search scientific or evidence-based information to find facts and hope. They research information about treatment and other cancer topics. They seek opinions from medical personnel or spend time learning about specific cancer topics, treatment options and survivorship recommendations through health care journals or online.
- Sharing your hopes with other people. When cancer victims talk about their hopes with others it helps those who care for them understand their feelings better. They can help the cancer victim stay positive and have a better idea of what things make the cancer victim feel hopeful.
- Writing down thoughts and feelings about hope in a journal. A hope journal is one way to record helpful sayings, ups and downs of the cancer journey, and what gives them hope. The journal can include feelings, relationships, hopes and fears, and plans for the present and the future. It can also provide a reference on what they have been through and how they survived along with highlights they may have forgotten.
- Expressing hope through other forms of creativity, such as drawings or scrapbooking. Reviewing and using cards received, words of encouragement and support shared by others can be put into a scrapbook or collage to express hope.
- Talking to a survivor. Finding someone who has survived a similar cancer can be beneficial. It’s helpful to meet individuals who have been where the cancer victim has been as they can relate to each other and the cancer victim can get suggestions and possibility hope through their shared experiences.
- Finding a support group. Support groups provide a safe place to share experiences, learn new ways to handle difficult situations and talk about emotions. The cancer victim will hear different stress coping strategies and how others are adjusting to life with cancer. Sometimes a health care team member knows of support groups. The cancer victim should check out several support groups before deciding one to join permanently and it’s also critical to attend more than one time to get a feel for each group.
- Confusing hope vs denial. Holding onto hope and being in denial are not the same thing. Denial means avoiding reality and refusing to admit the truth. Not admitting the truth is pretending things are going well when they really are not. Hope can ease overwhelming doubts and fears but needs to be realistic. It is being honest about the current situation while still looking forward to positive outcomes in the future.
- Talking to a therapist. If finding hope causes the individuals depression, anxiety or overwhelms them seek professional help. Ask a health care team member for a referral to a therapist who works with other cancer victims. Most cancer centers employ oncology social workers who are specially trained to work with cancer patients and their families. Even if the patient is not at a cancer center, the oncology social worker may meet with you the individual or refer them to someone.
- Recognizing hope changes over time. Hope is flexible and changes as the individual goes through their cancer journey. Only they will know what works best for them. If they realize that something hoped for does not appear to be happening, it may become necessary to refocus on other types of hopes. The outcome of situations cannot always be changed. However, they can decide what part hope will play in helping them deal with that situation.
Sometimes, the changes that come with cancer can feel overwhelming and cause a great deal of uncertainty. Hope can help individuals move forward despite bad news and disappointments. Hope may help them find the strength and courage to face the new and ongoing challenges.
Continue to Hope
Many cancer victims and survivors have faced difficult situations and will continue to face challenges during treatment and after treatment is done. It is important to recognize the hope strategies used by the cancer victim. They need to be direct with family, friends and professional caregivers about what is most helpful to them with regard to using and maintaining hope. Keep in mind that there is always something to hope for, and the individual has the right to determine what, when and how they hope.