Your Pals on HOPE Zoom: Hair Loss, Death Cafes, Multiorgan Transplant

Your Pals on HOPE Zoom: Hair Loss, Death Cafes, Multiorgan Transplant

Your Pals on HOPE Zoom: Hair Loss, Death Cafes, Multiorgan Transplant

You never know what you are going to hear about on HOPE Zoom (register here)…last week, we shared our common experience and sought-after information on:

HOPE Zoom, Wednesdays 6pET/3pPT and Saturdays 11aET/8aPT

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.

John R., Caregiver Companion

John R., Caregiver Companion

John Razzano quickly slid into role of family caregiver when his wife, Mary, was diagnosed with our rare cancer in 2014. That meant playing head nurse, chief paperwork officer, cheerleader, and patient advocate. “During that time, I felt alone and isolated trying to navigate the physical, emotional, and psychological elements of Mary’s treatment. Mary succumbed to the disease in late 2015, and one year later my adult son was diagnosed with Hodgkins Lymphoma. I shared caregiver duties with my future daughter-in-law and today, my son is healthy and in remission.”

During this time, John started a support group with Dr. Fran Baumgarten at UCSD for family caregivers of cancer patients to let people know a community exists willing to support and hold up its fellow caregivers. “We created the podcast, Caregiver Companion to let caregivers know they are not alone. We launched in December 2023, and we now have 10 episodes and publish every two weeks. I think it’s a very useful resource for caregivers. I hope you enjoy it and find it useful.”Caregiver Companion, A Guide to the Family Caregiver of Cancer Patients is available via Spotify and Apple Music. Add to your playlists and leave a review.