February 1, 2024

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

“Sometimes it is not about the journey or the destination, but the people you meet along the way.” —Nishan Panwar

I love to travel! I delight in seeing new places and I look forward to learning about different cultures. But I do not travel lightly. Packing a suitcase is a game and a challenge for me. I must be prepared for anything and everything! A recent trip to Europe highlighted my enthusiasm for new experiences while clinging to my suitcase “essentials”. Those real and those imagined.

Repeatedly during our family vacation, I was reminded of cancer patients’ tendency to refer to their disease as a journey. Phrasing it as such does not bolster any enthusiasm for me, but I often fall into this analogy myself. In lighthearted moments it is easy to refer to dealing with NETs as “It’s a trip!”, but that’s a brief reflection full of double meanings.

I have learned I prefer not to think of this disease as a journey or a trip and definitely not as “an excellent adventure”. I have learned, instead, that I must live my life daily with Neuroendocrine Cancer and I must learn to travel well with it. How I pack and manage my cancer baggage will help me to live well with this disease.

My current essential carry-on case includes pill boxes and sub. Q injection supplies plus the supporting documentation for these prescriptions. A larger than imagined selection of OTC aids (just in case) allow me peace of mind that is essential. A change of clothes and some healthy snacks round out my overstuffed bag. By including these tangible necessities for a very real and ever-present disease, I have learned that I do not pack unnecessary angst worrying about improbable complications.

By trusting in my prior planning and predictable needs, my journey is enhanced, and I can let my guard down to enjoy the unexpected. This is also my goal for dealing with this incurable disease. By educating myself and having a plan of preparedness, living with NETs is no longer a mental struggle, but an experience which can be enhanced.

My life with Neuroendocrine Cancer has opened my eyes to the gift of empathy, the trust of compassion, and the surprise of shared experiences. Others who share my reality and my health concerns have enriched my life in ways I never thought possible. Our paths forward may vary greatly, but we are forever joined.

There is an honor to be among fellow cancer patients which is best expressed by an old Swedish proverb: “Shared joy is double joy. Shared sorrow is half sorrow”. Let’s remember to walk together with this disease celebrating our good news and uplifting one another in our sorrows. Our loads will be lighter, our footsteps more assured, and our community strengthened by our common goals.

One way to do that is by attending one of NCAN’s 2024 regional patient conferences. They allows patients across the US to join together with medical experts and advocates for greater awareness and education. Equally important is the opportunity to meet and connect with others who are also living with Neuroendocrine Cancer. Our patients and caregiver advocates are the stars of these gatherings. It is our shared joys and shared sorrows which strengthen our journey. We hope that you will plan to JOIN US at one of these conferences so that we may all be enriched by those we meet along the way. You won’t be sorry you did.

And remember, if you ever need us, we are HERE for you.