Optimizing Nutrition and Quality of Life
Pancreatic Enzymes, Palliative Care, Managing life between treatment and the Role of Caregivers
When we sing, “We hope you live to be a hundred, a hundred years or more.” right after Happy Birthday, we don’t just wish our loved ones a long life but a life that is also comfortable, happy, and quality. See, the quality of our lives matters as much as the length.
As we move through any challenge that life throws our way, it’s about more than surviving—it’s about thriving. It’s about making sure that every day is filled with the care, comfort and support that allow us to live life fully, even during challenging times.
In this chapter of Intro to Advocacy, we’ll explore the aspects of managing life with Pancreatic Cancer. From connecting with advocacy and support organizations that stand by you, to understanding the benefits of incorporating palliative care early on. You’ll find practical tips on balancing life between treatments. Each section is crafted to make you feel empowered, informed and ready to embrace the journey ahead with confidence, just like Heather did.
Connect with Support and Advocacy Organizations
There are two national organizations for Pancreatic Cancer in Canada: Craig’s Cause and Pancreatic Cancer Canada. Both offer a range of supports, which we’ve highlighted below, but Pancreatic Cancer Canada seems to be more focused on research initiatives, social change, and social media than patient-focused programs.
In Particular, weekly meetings offered through Craig’s Cause called “Peers with Pancreatic Cancer” give you and your family a chance to join an ongoing discussion with dozens of others in the same boat as you, hear about their treatments, learn about ongoing developments and research, clinical trials, and more to gain an advantage or at very least evaluate your satisfaction with your current treatment approach.
Craig's Cause
- Craig’s Cause Pancreatic Cancer Society has weekly support groups Peers With Pancreatic Cancer™ that take place over Zoom, facilitated by Erin Ranger with patients from Canada and the United States.
- Patient Financial Support Grants™ that provide financial aid to patients during their treatment periods.
- Monthly support groups Support4Caregivers™ that connects you with other Caregivers to Pancreatic Cancer patients who understand what you’re going through.
- Ask a Doctor™ Service which helps with complex or specific treatment inquiries pertaining to the type of cancer you have, and can help with obtaining a second-opinion or answering your questions about clinical trials.
- A Pancreatic Cancer Specialists referral list which highlights specific institutions in Canada that specialize in treating Pancreatic Cancer.
- A Pancreatic Cancer Clinical Trial Finder™ which upon completion of a short questionnaire can help you match to clinical trials. We cannot stress the importance of Genetic And Somatic testing at the time of diagnosis not only for treatment guidance, but because more and more clinical trials are using biomarkers in their exclusion/inclusion criteria.
Pancreatic Cancer Canada
- Partnership with Wellspring Peer Support and Monthly Support Groups pairs patients with a one-on-one support volunteer who can call you at home to discuss ongoing issues or just lending a ear.
- Ask an expert service which allows patients to consult with an expert between doctors visits on treatment specific questions, unable to provide a second opinion.
Managing life between treatments
Managing life during treatments involves balancing medical appointments and everyday activities. Staying organized, using planners, and pre-arranging support can significantly reduce stress and maximize the quality of life.
Lean on community resources and establish routines that provide structure without being overwhelming. Hold tight to those simple pleasures, like walks and movie nights with family or friends that can offer invaluable emotional boosts.
The Role of Caregivers: Lean on Them
Caregivers play a critical role in the journey of pancreatic cancer patients by providing various forms of support that are tailored to whatever that person needs.
- Emotional Support: Offering a listening ear and comforting presence.
- Logistical Help: Managing appointments, transportation, and daily tasks.
- Medical Advocacy: Tracking symptoms, medications, and communicating with healthcare providers.
- Practical Assistance: Helping with meal preparation and household chores.
- Financial Management: Handling medical bills and insurance claims.
Their diverse responsibilities extend beyond primary care to include emotional and logistical components. You might find yourself doing things you’ve never been asked to do.
Effective caregiving often requires resilience, organization, and continuous learning. But you’ll get the hang of it and know it’s more than okay to feel frustrated sometimes.
Professional support groups, such as Craig’s Cause and its Support for Caregivers program, can provide caregivers with valuable resources and emotional support.
Optimizing Nutrition Intake
What Mom could eat was everything at the beginning. Later on some foods became an issue. She loved smoothies always.
But what about specific recommendations for managing nutrition as someone with Pancreatic cancer? PANCAN, along with Canadian PANCAN organizations stress the importance of great nutrition at any stage. They do highlight, although, that many may need to turn to pancreatic enzymes to make the most of their meals.
If you’re looking for recipe ideas, PANCAN has a great recipe section on their website, and our mother found some cookbooks which addressed side effects from treatment helped her a lot, especially cookbooks that make alterations to account for the change in taste or lack of treatment can cause.
Ask About Pancreatic Enzymes
Studies have shown that Pancreatic Enzymes increase overall survival with virtually no side effects. Anyone with Pancreatic Cancer has some degree of decreased enzyme production which can affect how your body absorbs nutrients, which leads to weight loss and fatigue.
Pancreatic Enzymes, also referred to as “PERT”, are usually sourced from the Pancreas of pigs. It’s just a matter of figuring out what dose works to restore your normal production of enzymes so you can get the most out of each meal. Talk to your doctor as soon as possible about starting them. Furthermore, Craig’s Cause offers a PERT calculator to help you calculate optimal dosage based on the foods your eating.
Talk About Palliative Care Early
Palliative care is not end-of-life care. Let’s get that straight. It’s about improving your quality of life. And my Mother had fifteen excellent months that she lived life up. You need a team around you that will counter your pain before it becomes an issue.
Palliative care is about enhancing quality of life, not just end-of-life care. My mother enjoyed fifteen great months thanks to proactive pain management. Our province's Paramedics Providing Palliative Care Program was invaluable, allowing us to avoid long ER waits by treating issues at home.
Whether managing vomiting or dehydration, the paramedics provided excellent care. We learned to be proactive, working closely with the Palliative Care Team to address issues before they worsened. This involvement in decision-making was empowering.
