Living with NET cancer may feel like being in the midst of a storm. Sometimes it feels like a light drizzle. Other times, it’s a heavy downpour. It’s certainly not sunshine and roses. As Vivian Greene’s popular saying suggests, rather than hunkering down and waiting for things to get better, those in the NET community must learn to find a way to adapt and cope so that we can live fully.
Just to be clear, this is not to minimize how difficult it is to live with the disease. It is hard. Sometimes, we need to shelter under our umbrella. We just try to survive the terrible storms. Other times, our deluge of tears mix together with the raindrops. We just need a good cry to release the sadness, frustration, and disappointment. It’s healthy to grieve losses, including anticipatory losses of hopes and dreams we are letting go of. This is not about choosing to see the glass as half full. It’s about being prepared, proactive, and innovative in finding ways to adapt to your symptoms and a new normal. In order to step out from under your umbrella, it helps to be wearing proper rain boots and a raincoat. Likewise, there are steps to take to adapt to living richly and fully, despite living with NET.
Here are some suggestions to help you move from sheltering to dancing in the rain:
1. Educate Yourself on Managing Symptoms:
Watch the 2020 LACNETS Annual Conference presentations by NET Experts Dr. David Metz (Gastroenterologist) and Dr. Run Yu (Endocrinologist) on Symptom Management: Diarrhea, Hyperglycemia, Diabetes.
Watch the 2018 LACNETS Annual Conference presentation by NET Expert Dr. Andrew Hendifar on Managing Carcinoid Syndrome.
Watch the October 13th, 2020 presentation by Dr. Shirley Paski on Management of Diarrhea in NETs.
2. Prepare with Practical Strategies:
Carry your medical information:
Set up your emergency information on your smartphone. With both iphones and Androids phones, you can always be carrying your emergency contacts and essential information such as medical conditions, allergies, and current medications. This allows first responders to access important medical information from the lock screen, even without your passcode.
For more on setting up your Medical ID in the Health app on your Iphone, click here.
For more on setting up your Apple Watch, click here.
If you don’t have a smartphone or prefer a wearable medical ID, Emergency RoadID is an example of a wearable medical ID to communicate your vital medical information.
Prepare your Advanced Directives.
Read our "What Matters Most" blog post.
Know your NET VITALS. Review and update your NET VITALS periodically including before and after medical appointments and scans. Carry a copy with you.
Track your symptoms. One way to do this is with the Health Storylines App.
Organize your care coordinate and communication with your family and friends. A helpful tool is LotsaHelpingHands.
Watch the LACNETS May 2020 “What Matters Most” Webinar.
3. Find strategies to allow you to venture out of your house with more comfort:
NET patients are often on monthly somatostatin analogues (octreotide or lanreotide) injections to control symptoms or tumor growth. Did you know that NET patients can arrange to get their monthly shot at home? Both Ipsen (the manufacturer for lanreotide) and Novartis (the manufacturer for sandostatin LAR) offer a home administration program and co-pay assistance program.
For those who suffer from carcinoid syndrome and require rescue shots, consider asking your doctor about the Bynfezia pen. This is a prescription prefilled multidose pen injector of octreotide that does not require refrigeration.
For those who suffer from diarrhea, consider carrying a portable deodorizer such as OneDrop Before-You-Go Toilet Drops.
4. Attend to Your Nutrition:
Watch the LACNETS video Nutrition For Nets with NET Dietician Meghan Laszlo.
Request a free copy Of The “FOOD YOU LOVE” COOKBOOK FOR NETS FROM LEXICON.
For those with Carcinoid Syndrome, download the STANFORD CULINARY KIT FOR NET PATIENTS WITH CARCINOID SYNDROME.
For those without Carcinoid Syndrome, download the STANFORD CULINARY KIT FOR NEUROENDOCRINE TUMOR PATIENTS.
5. Shifting Your Perspective and Attitude:
Read LACNETS blogpost “Breathe” about taking time to be mindful, meditate, or simply breathe.
6. Find Support
Ask for help! You have a NET community who cares about you! Read LACNETS blog post “Asking for Help.”
There is a dedicated space for family and friends of those living with NET patients (often called NET caregivers, partners, advocates). LACNETS offer a monthly NET Caregiver Support Group open to anyone supporting a NET patient. For more information, read LACNETS blog post “Becoming a Caregiver.”
Watch our 2020 Virtual NET Cancer Day Symposium. Palliative Care expert, Dr. Chandana Banerjee gives a presentation on coping and another on caregiving.
We NET patients and caregivers have an opportunity here. We can choose to hunker down, stay in survival mode, and hope for the best. Or we can learn to dance in the rain.
I hope you join us in dancing in the rain.
THANKS TO OUR SPONSORS
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS