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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:

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.

3. Find strategies to allow you to venture out of your house with more comfort:

4. Attend to Your Nutrition:

5. Shifting Your Perspective and Attitude:

6. Find Support

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.




Director of Programs & Outreach, LACNETS

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