Cancer Chronic Disease Self-Management
This article is not intended to replace sound medical advice from healthcare professionals. It is provided as a general guide to families and care givers of cancer survivors on self-management strategies for individuals who have been diagnosed with cancer. It's crucial to emphasize that the individual should consult with their healthcare team for personalized guidance and to address their specific needs. Here are some general tips for managing or recovering from cancer as a chronic disease:
Spiritual Strengthening: Recovery and a healthy lifestyle depends to a big degree on one's mental wellness. It is important for individuals battling chronic illnesses to realize their situation is a test from Allah (swt). Through His wisdom, He tests individuals differently, and wishes the best for His creation. An illness could hold many benefits the patient and others around do not recognize, ranging from expiating sins, to strengthening one's care faith, increase in good deeds, providing opportunities to call upon Allah (swt) and the list goes on.
Regular Medical Follow-up: Encourage the individual to maintain regular follow-up appointments with their oncologist and other specialists involved in their care. Monitoring for any signs of disease progression or treatment side effects is essential.
Medication Management: Ensure that the person is taking their prescribed medications as directed. They should understand the purpose of each medication, potential side effects, and how to manage them.
Symptom Tracking: Encourage the individual to keep a journal to track their symptoms and any changes in their condition. This can help identify patterns and assist healthcare providers in making treatment adjustments.
Healthy Lifestyle: Promote a healthy lifestyle, including a balanced diet and regular exercise, as tolerated. These practices can help improve overall well-being and may reduce the risk of complications.
Stress Management: Living with a chronic illness can be emotionally challenging. Encourage the person to seek support from mental health professionals, support groups, or counseling to cope with the emotional aspects of their diagnosis.
Cognitive Rehabilitation: Some cancer survivors could experience cognitive changes die to medication or if cancer affected the brain depending on the location of the brain tumor and treatment. Cognitive rehabilitation programs can help address memory, concentration, and other cognitive challenges.
Physical Rehabilitation: If the individual experiences physical limitations or deficits due to their treatment or the tumor itself, physical therapy or occupational therapy may be beneficial in improving mobility and daily functioning.
Fatigue Management: Fatigue is a common side effect of cancer and its treatment. Encourage the person to balance activity and rest, and consider strategies such as pacing activities throughout the day to manage fatigue.
Pain Management: Cancer can cause pain or discomfort. Ensure that the individual communicates any pain or discomfort to their healthcare team so that appropriate pain management strategies can be implemented.
Support System: Encourage the person to lean on their support system, including family and friends. A strong support network can provide emotional and practical assistance during their journey. Support systems can be set up in ways that are easy for the supporters and the individual receiving the care. For example a group of 14 friends who live nearby a person in need of care can set up a rotating schedule where each of them visits their recovering friend, once every two weeks in the morning, and once every two weeks, spreading the load across the group evenly and easily.
Advance Care Planning: Discuss end-of-life care preferences and advance directives with the individual, ensuring their wishes are documented and known to their healthcare providers and loved ones.
Stay Informed: Encourage the individual and their caregivers to stay informed about their condition and treatment options. Knowledge can empower them to make informed decisions about their care. There could be non-traditional methods, outside of traditional healthcare protocols that individuals wish to explore.
Financial and Legal Planning: Cancer treatment can be costly. Consider connecting the individual with resources for financial assistance and legal advice to address potential financial and legal issues.
Patient Advocacy: Encourage the individual to become their advocate in their healthcare journey. This involves actively participating in decision-making, asking questions, and seeking second opinions when necessary.
Cancer Care Organizations
Courtesy: National Institute of Health (NIH), Self-Management: Enabling and Empowering Patients Living with Cancer as a Chronic Illness.
Every individual's experience with cancer is unique, so it's crucial to tailor these self-management strategies to their specific needs and circumstances. Consultation with a medical team and specialists is essential for creating a personalized self-management plan. Listed below are some general resources that coule be helpful:
Cancer Hope Network: www.cancerhopenetwork.org. This organization connects cancer patients and their caregivers with trained volunteer survivors for one-on-one support.
Cancer Survivor Network: https://csn.cancer.org/. The Cancer Survivors Network is a peer support community for cancer patients, survivors, caregivers, families, and friends. CSN is a safe place to connect with others who share your interests and experiences.
MyLifeLine: www.mylifeline.org. MyLifeLine offers free personalized websites to help cancer patients and caregivers communicate with friends and family and access resources.
Livestrong Foundation: www.livestrong.org. Livestrong provides support and resources for cancer survivors, including assistance with the physical, emotional, and financial challenges of cancer.
Cancer Support Community (CSC): www.cancersupportcommunity.org. CSC offers support groups, educational programs, and mind-body wellness activities for cancer patients and survivors.
Gilda's Club Worldwide: www.gildasclub.org. Gilda's Club offers support groups, workshops, and social events for cancer patients, survivors, and their families.
Imerman Angels: www.imermanangels.org. Imerman Angels connects cancer survivors with mentors who have experienced a similar cancer diagnosis, offering one-on-one support.
The Wellness Community (TWC): www.thewellnesscommunity.org. TWC provides support, education, and mind-body programs to enhance the quality of life for people affected by cancer.
American Cancer Society (ACS): www.cancer.org. ACS offers a comprehensive range of services, including support groups, educational materials, and information on cancer treatments and coping strategies.
CancerCare: www.cancercare.org. CancerCare provides free support services, including counseling, support groups, and financial assistance for cancer patients and their families.
National Cancer Institute (NCI): www.cancer.gov. NCI offers a wealth of information on cancer research, treatment options, clinical trials, and supportive care. They also have a Cancer Information Service helpline.
National Coalition for Cancer Survivorship (NCCS): www.canceradvocacy.org. NCCS advocates for quality cancer care and provides resources to empower cancer survivors in their healthcare journey.
Stupid Cancer: www.stupidcancer.org. Stupid Cancer is a community of young adults affected by cancer, offering support, education, and advocacy.
Cancer Chronic Disease Self-Management Resources
Self-Management: Take Control of Your Health, American Cancer Society - Discusses 5 steps for better self-management.
Peter Mac Cullum Cancer Centre - Has resources in various languages
National Institute of Health (NIH), Self-Management: Enabling and Empowering Patients Living with Cancer as a Chronic Illness, 2011.
Self Care, National Cancer Institute - Discusses tips for going back to work, controlling emotions, feelings and relationships with others.