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.

Your Pals on Nausea

Your Pals on Nausea

Anti-Nausea Suggestions from Your Pals

graffiti twins puking; image courtesy of Jon Tyson on unsplash.com The Technicolor Yawn, Praying to the Porcelain Goddess, Yodeling Groceries – call it what you want – Nausea and its close cousin, Vomit, are relentless foes when given space to flourish. Sometimes, we experience nausea during post-surgery recovery; it’s a natural by-product of a healing digestive system. Other times, anxiety provoked by upcoming scans or monitoring appointments gets us queasy. And then there are the side effects of chemotherapy or immunotherapy that leave us sick to our stomachs because, well, that’s what those treatments do.

Keeping the Waves at Bay

On a recent thread in the PMP Pals Facebook Group, Pals worldwide shared their personal non-medication favorites for keeping that “Call to Ralph” on hold. Our overall consensus? Get ahead of it. It’s much easier to quell a puking urge than a Tummy Riot. These suggestions below are just that – suggestions. If you need medication like Zofran (Ondansetron), Reglan (Metoclopramide), or Phenergan (Promethazine), work with your medical team to get those meds in your nausea toolbox now. Bottom line: don’t suffer and don’t wait. Nausea and vomiting can quickly turn into a medical emergency. Have what you need on hand.

Tips From Your Pals

Here are just a few of our over-the-counter solutions that you can find in the grocery store, pharmacy, or online:

  • Liquids: maraschino cherry syrup, pickle juice, decaf tea, Pepto-Bismol
  • Candies: GinGins ginger candy, lemon drops, mints, Werther’s, any hard candy that makes you feel good
  • Tablets & tinctures: apple cider vinegar tablets, smelling scents like lavender oil, peppermint oil, or isopropyl alcohol, Bonine or Dramamine tablets
  • Edibles: saltines & crackers, medical marijuana (smoked, vaped, eaten) like Wyld gummies with Indica, ginger ale, bitters & soda, anti-nausea lollipops
  • Physical: roller ball on solar plexus and neck muscles, counting breaths, Seabands acupressure wrist bands, walk outside in fresh air, cold compress on your forehead

Here’s what your Pals had to say about nausea:

“Not sure this will help at all as it is a very different approach. I get nauseous when my body gets tight, especially my neck which then travels to my solar plexus. I have a small ball that I roll on my tight neck muscles and do some gentle neck stretches. I then attempt to lightly roll the ball into my solar plexus to try and relax it. This all has to be gentle or it gets tighter. The other thing I do is counting my breath. I find focusing on my breath also helps relax me and therefore helps with my tightness. I hope you feel better.” ~ Lindsey W.

“I wore Seabands that go on your wrists so long I had indents. I took a multi-approach with using all these plus meds.” ~Nicole J.
“When I got hungry, I got nauseous. I ended up getting some gummies, Wyld brand with Indica. I took a 1/4 of the piece at bedtime and it helped. If I quit after about two days, I’d start feeling nauseous again. It took probably six months for that to go away. I didn’t feel woozy or anything. My doctor asked if I wanted more Zofran and I said no thanks and explained about the Indica gummies and she said good, better for your organs. 🙏🏼💪🏼🧡 They made all the difference to me. The biggest part was that the dose was small enough to relax me and kept the nausea away, but I didn’t feel any other side effects.” Molly C-P.

No Urge vs. Fighting Purge

Take measures to keep nausea at bay by
  • Eating smaller, more frequent meals
  • Avoiding spicy, greasy, or strong smelly foods
  • Opting for the blander menu (bananas, rice, applesauce, toast)
  • Waiting a few hours after eating before brushing your teeth

Do you have an anti-nausea suggestion? Email us and we’ll add it to this list. NOTE: This post is not intended as medical advice. Please consult your physician or medical team for more information and guidance.

Photo by Jon Tyson on Unsplash

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.

Send in Your Gut-Sensitive Recipes

Send in Your Gut-Sensitive Recipes

We all know that feeling – the Dreaded Belly Bomber – following an all-too-good-tasty meal. It’s bittersweet and frustrating. But what are we to do about a sensitive gut, the by-product of a transitioning gastro system post-surgery?
 
Some of us get a team nutritionist’s help. Mostly, we’re left to figure it out. Good news is you don’t have to go it alone because a bunch of Pals already have had success.
 
We’re looking for Pals recipes, meal ideas, and smoothies that are easy on the system and taste great (most of the time). They can be weight-gainers, belly soothers, or just plain fun for an over-anxious, deprived palate.
 
Send us your recommendations and we’ll compile another Pals in the Kitchen Cookbook for those in our community who are just out of surgery, adjusting to a compromised digestive tract, and experiencing food sensitivities.
 
Send us your best dish:
> Email your name, town & state
> Complete recipe with ingredients list and measurements
> Include cooking times or special pans needed
> BONUS for nutritional composition
> A photo of you in the Kitchen or the final dish