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.
Pal Lindsay B. talked with three appendix cancer specialists on the Society of Surgical Oncology’s podcast, SurgOncToday. Moderated by PMP Pals Medical Advisory Board member Dr. Melanie Ongchin of the University of Pittsburgh Medical Center (UPMC), Lindsay spoke about fertility issues facing women with peritoneal cancer diagnoses. Thrust into an immediate decision-making scenario, on top of dealing with a cancer diagnosis, women need solid information in real time to decide how to preserve their options for future parenthood. Joining the conversation are Dr. Trang Nguyen from Washington University and Dr. Molly Kledzik from WVU.
Thanks Lindsay for being a patient advocate and Pals ambassador, and speaking openly about these issues that face women navigating appendix cancer, its related conditions like PMP, and the rare disease journey.
Each year, the Mike Weber Sr. Memorial Foundation holds its annual fundraiser at White Beeches Golf & Country Club in Haworth, NJ. Family members honor the legacy of Mike Sr., an appendix cancer survivor whose legendary impact on his local community lives on in larger-than-life ways. The foundation bearing his name, led by his wife and three children, continues to influence the rare disease space. This year, board members Dave L., Pals Lindsay Barad, and father Jim joined board member Mike Weber Jr. in raising awareness of appendix cancer and inspiring generosity in honor of Mike Sr.
“It’s an amazing event,” notes Dave L. “A true honor to a great man whose amazing legacy continues in his family and their tireless dedication to save others from this deadly disease.
I hope it continues as it has become a highlight of my summer. I played well, one away from shooting PAR, on an immaculate course, with great people. Thanks, Mike, your family, and the army of volunteers. It was a very good day, indeed!”
Over 250 people attended the golf tournament and contributed over $35,000 towards various patient and care partner groups. For more information on the Mike Weber Sr. Memorial Foundation, visit www.goteamweber.com.
Several Pals are very public with their illness, choosing to share their wellness journey online via YouTube, Instagram, Facebook, and Caring Bridge. All share the hope of helping a fellow appendix cancer survivor navigate the surprises of this diagnosis, along with insider perspectives for treatment and daily living. You can find Pals like Jamie V., Lindsay B., Roberta G., and Ariel M. through their social platforms.
Paul in Perth (aka Paul E. from Australia) has a Youtube channel on which he’s become something of a virtual celebrity. With over 24,000 followers worldwide, Paul chronicles his appendix cancer/PMP journey through the highs and lows. He recently shared his efforts to “wrangle his affairs” by organizing paperwork into binders and explaining his system with family ahead of time. He’s got a really sold way of explaining processes and the how’s and why’s; he’s also always looking for solutions and answers to pass along to others. Be sure to give his videos the “Thumbs Up” to help them with passive income, Like/Follow his YouTube Channel to increase their visibility as social influencers, and comment to let him know you’re listening.
*PLEASE NOTE: The views and comments shared by Pals on their own communications channels are their own opinions and perspectives. Their comments do not necessarily reflect those held by PMP Pals.
Many of you may recognize Jamie V. as one of the “Pals Angels,” a HOPE Zoom moderator on Wednesday at 6pET/3pPT. She does a lot of volunteering for our group like mentoring other patients 1-on-1, assisting with graphic design (she helped with the 5K logo), cardwriting, greeting at the Meet Up, and keeping us grounded in today.
Many Pals found our community as a result of online search and Jamie’s plugs on her YouTube channel. You can keep up with Jamie and her journey of hope with goblet cell appendix cancer here. In her most recent vlog (video blog), Jamie takes us on a drive to her last Tecentriq Immunotherapy treatment.
For a woman living with disease since 2019 (yes, she went through CRS & HIPEC on her own during the COVID hospital crisis), she’s always got something going! Outside of Pals, Jamie is a talented graphic designer. jewelry maker, TikToker, and lover of all things four-legged and furry.
“I love doing this because I feel that helping people is why I’m still here. If I can help one person feel connected, to replace fear with HOPE, then it’s all worth it,” says Jamie. Check out her sites and be sure to give her posts the “Thumbs Up” to help with passive income and increase her visibility as an appendix cancer social influencer. You can also comment to let her know you’re listening.
*PLEASE NOTE: The views and comments shared by Pals on their own communcations channels are their own opinions and perspectives. Their comments do not necessarily reflect those held by PMP Pals.
Anti-Nausea Suggestions from Your Pals
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
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