Your Pals on HOPE Zoom: Feel the FEELS, Control, SSDI

Your Pals on HOPE Zoom: Feel the FEELS, Control, SSDI

Your Pals on HOPE Zoom: Feel the FEELS, Control, SSDI

Twice a week, we gather online to talk about appendix cancer. Open to patients, care partners, and support people, HOPE Zoom allows us to ask questions, share our vulnerabilities, and draw on the strength of others to get us through difficult times. We share joys, successes, and NEDs, too! You are welcome to join us according to your schedule. Meetings usually last 1.5-2 hours, but you can leave at any time. Register here for the link valid for Saturdays at 11aET/8aPT and Wednesdays 6pET/3pPT.

This week on HOPE Zoom, we touched on these topics:

  • Going on disability and the nuances of SSI and SSDI
  • Stage IV Appendix Cancer is not like other Stage IV cancers
  • The Shock of Diagnosis and how we cope by consulting Dr. Google or sticking our heads in the sand
  • Grasping at whatever we can control or influence
  • Remembering we can only control our attitudes and actions
  • Accepting feelings of helplessness and hopelessness, allowing the emotional process to unravel
  • Having NO need to be Polly Positivity, allowing “Feel the FEELS,”
  • Setting aside a time and day without cancer talk
  • Acknowledging our internal dialogue “I feel fine. Do I really need to get this surgery?”
  • Asking that question and discovering the reasons why you do need to get this surgery: cancer grows, it doesn’t belong there, it crowds out other organs and inhibits normal digestive function, mucin hardens which creates a host of other problems, your health only gets worse-do Inot better, seize the opportunity to get surgery now while you are healthy vs waiting until crisis and frailty
  • It’s ok not to be hungry and what might be causing it: stress, body diverting energy to fight off cancer, musin’s internal pressure, So much is being learned about The Brain-Gut Connection
  • Remembering to eat your protein!
  • The importance of prehabbing and rehabbing, and when to pass the baton to your surgical team
  • Yes, you can request to talk to your surgeon before entering the operating room (especially if you haven’t met him in person before)
  • Trusting your medical team is there for you after the surgery, too!
  • The shortcomings of our respective health systems and feeling left behind
  • NEDs and advancing illness
  • Anticipation of CRS/HIPEC surgeries
  • And a whole lot more!

If you’ve got a question about appendix cancer, PMP, pathology, surgery, and living beyond a rare cancer diagnosis, join us.

Hope Wrapped Up: Barad’s Blankets

Hope Wrapped Up: Barad’s Blankets

In March 2022, when Lindsay Barad packed for her CRS/HIPEC hospital stay, she thought she over-packed.

The one item that she didn’t bring along was a blanket and her first night in the hospital was freezing! The next morning, her father, Jim, stopped at a local department store and purchased two blankets for his daughter. He found this highly ironic as his business, Barad & Co, is a textile manufacturing company that produces plush blankets.

For the next week, Lindsay recovered in the hospital, wrapped up in those cozy blankets. They boosted her spirits, kept her warm, and helped make the sterile hospital room feel more like home. She found similar comfort with PMP Pals. Both have proven invaluable in establishing emotional resilience for living beyond a rare disease diagnosis like appendix cancer.

PMP Pals is partnering with Barad & Co to send Pals worldwide a gesture of comfort. Jim’s gift is his way of giving back to the community which has helped his daughter, Lindsay, as a patient, and him as a caregiver. Similar to our Bare Bottom Bears Program, Pals will send you a complimentary, cozy, plush blanket by mail, as you head into (or home from) surgery or other challenging treatment. This blanket symbolizes what we want every Pal to know: no matter what you are going through, you are not alone.

To request a blanket, email Lindsay at lindsay@pmppals.net. Include the name of the patient or caregiver recipient, mailing address with zip code, and phone number (if available). Out-of-country requests are accepted, however take a longer time to arrive. Limit one blanket per household..

After you receive your Barad’s Blanket in the mail, send us a photo and tell us how this Message of Hope lifted your spirits.