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
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.
We don’t necessarily need a designated month to remind us how important emotional resilience is to our quality of life. Keeping a clear mental perspective affects our overall wellness, as well as our relationships with family and friends. But, it can be hard to navigate the day-to-day with a rare cancer diagnosis that, on all accounts to others, is over…right? People ask: You had your appendix out, and the cancer’s gone, right? So, you’re cured, right?
Learning how to juggle anger, frustration, confusion, and despair with gratitude, happiness, and HOPE are part of our daily paradigm. But, we don’t have to go it alone. That’s why we log in to HOPE Zoom every so often, to check in with our tribe, those who understand what it’s like to live beyond an appendix cancer diagnosis. Here are a few tools to add to your mental health toolbox, compliments of Mental Health America:
The National Organization of Rare Disorders (NORD) also has a local resources state directory of various health services you can search.
Lastly, don’t underestimate the value of talking with a mental health professional. Talk with your physician or medical team about securing time with a clinician specialized in long-term illness and cancer survivorship. Conversation is just one tool we have to build the emotional resilience we need to go the distance with appendix cancer. Let’s have those talks year-round.
Open the Mental Health Toolbox
