Getting diagnosed with pancreatic cancer and living with the disease can be confusing and highly emotional. Throughout the journey, support is critical for every patient to find some sense of well-being in their daily lives.
Understandably, many patients struggle to ask for support or to find resources to assist them. Some feel asking for help shows weakness or a lack of independence. But the truth is, no one can cope with pancreatic cancer entirely on their own.
A healthy support system can assist patients in taking care of the stress of living day-to-day with this disease. Fortunately, a wide array of roles and resources can help patients build and maintain a strong support system.
Who Can Help Support Patients?
Having a support system of caregivers, family, friends, healthcare professionals and a Pancreatic Cancer Action Network (PanCAN) Patient Central Associate is important to address and manage the needs of the patient.
Patient Central: The highly trained and compassionate Patient Central Associates provide free, personalized information about the disease, including support services. They can also find resources for any questions you have related to pancreatic cancer.
Caregivers, Family, Friends, Coworkers and Neighbors: There are people from the various circles of your life who will want to help you fight this disease. They want to stay connected to you and feel of use to you through this journey. It benefits both of you when you give those that care about you the opportunity to help. They feel good giving you a hand, and you receive the help you need from someone you know and trust.
Healthcare Team: Patients must be able to share their concerns openly and honestly with their medical team. PanCAN strongly recommends seeking a healthcare team that suits all of your physical, mental and emotional needs.
Your healthcare team has the professional knowledge to help guide you on how to cope with the disease. Plus, some medical facilities have patient or nurse navigators who can direct you through the healthcare system for quality care. Your team can also make counseling referrals.
Counselor or Social Worker: The psychological and emotional hardship patients undergo fighting this disease can be severe. A professional counselor or social worker can offer their expertise and experience to help you find better clarity and stability.
Support Groups: When you meet and speak with others affected by pancreatic cancer, you don’t feel so alone but instead a sense of community. By listening to others and sharing your own stories, you realize that some of your experiences are “normal.” Plus, you can gain helpful tips and insights.
The key is to connect with the type of support group that works best for you, whether it’s in-person, online or via telephone. PanCAN’s Survivor & Caregiver Network is another resource that connects patients and caregivers nationwide with others who have been in similar situations and who communicate by phone or email. Patient Central can also help you find in-person groups in your area.
Spiritual or Faith-based Groups: Whether you believe in a particular religious faith or a nondenominational spiritual calling, the people who share that belief with you can be a powerful source of support. The principles and practices of a spiritual community can connect you with a bigger picture of life, which can influence your journey in meaningful and positive ways.
Social Groups: Maybe you love reading books, knitting, volunteering or simply walking. Groups that bring people together for a shared social interest can be an easy and fun way to receive support and enjoy community.
Pets: For many patients, furry little friends can be a tremendous source of love and support. Just the simple presence of pets can motivate patients to get out of bed and go outside for some fresh air. These beloved animals have needs, just like people, to eat, play, walk and be comforted, which can do a lot for the patients who care for them.
How Can Patients Be Supported?
Some patients may find it difficult to ask another person for help, especially if they feel as though they’ve been able to primarily take care of themselves. But all patients should know their journey can be eased with the support of their community.
When your family, friends or caregivers ask what they can do to help, here are a few ways they can support you:
- Organize your doctor visits and medical records
- Speak with healthcare team members on your behalf
- Research helpful resources and relevant information
- Arrange for transportation or child care
- Troubleshoot challenges by discussing them with you and your loved ones
- Find services to assist with finances and insurance
- Keep a schedule of people who want to visit you
Allow people to also help with practical day-to-day needs and chores such as running errands, house cleaning and preparing meals. Especially when you’re not feeling well, it can be good for someone to go with you to a doctor’s appointment, where they can document important points or questions that are discussed.
Conversations about the goals of your treatment can also be part of an ongoing dialogue with caregivers, family members and your healthcare team.
At times, your loved ones might be unsure about what you want or need. Just a brief text or call with a simple request can be all they need, such as taking your dog for a walk or help with the laundry. And it’s okay to say you need some space and quiet to process thoughts and feelings on your own.
Your support system can be your best advocates as well as your eyes and ears when meeting with your healthcare team. They can be your arms and legs when you don’t have the energy to do the most routine things. And they can simply be that warm presence that helps you feel that everything’s going to be okay.