NETSTalk

April 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Almost all Neuroendocrine patients have referred to their diagnosis at least once as “My Journey”.

Many of us with NETs are fortunate to realize that ours can be a long, fulfilling journey if we align ourselves with proper specialists, tests, and treatments. What we do not always realize at the onset is that Neuroendocrine Cancer is rarely a straight and narrow, uneventful path.

“I need a road map!” said a local support group friend recently. She was expressing her frustrations at having to change course, yet again, while navigating this crazy disease. “My dad taught me how to read a road map. He even taught me how to fold one correctly!” she said. This exclamation reminded me of my father-in-law’s attempts to teach me how to fold a road map correctly, and to occasionally drive in the less populated lane in order to travel safely, and efficiently. I have not used a paper map in years, but my talent for focusing on my destination by comparing alternate routes has proven beneficial time and time again since my diagnosis.

I can not give my friend my Neuroendocrine road map with my particular folds and detours, but I and other patients can share our experiences to help her avoid some of the potholes and detours. This journey is hers and hers alone. We cannot tell others what is best for them. We can’t predict how their journey will evolve. However, we can encourage them by sharing our stories. We can promise them that they will never journey alone.

As you move forward on your own Neuroendocrine Journey, here are a few “Rules of the Road” to keep in mind.

1). Don’t be afraid to ask for directions! Someone with experience is always willing to help

2) Don’t drive alone. Make friends with others who share a similar journey.

3). Stay flexible. What you have envisioned and what becomes reality may often include bumps, detours, and realignments. Just keep moving forward!

4). Have a Road Map. Refer to it often. Be willing to change the folds in order to follow the advice of our knowledgeable and experienced NETs specialists.

5). Enjoy the Ride. Yep! Living Well with Neuroendocrine Cancer is our travel goal.

6). Call NCAN for Roadside Assistance. If you find yourself on the side of the road, feeling lost and unsure, give us a call. That’s what we are here for!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

March 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Twenty years ago this month, after 7 years of misdiagnosis, a lovely lady received her neuroendocrine cancer diagnosis.

She saw first hand the lack of NETs information available and within two years decided to take action. She embarked on a journey to bring awareness and education to others who shared the same diagnosis. Today, the Net Cancer Awareness Network leads a community of over 10,000 people, including 33 Chapter Support Groups in the United States.

Since 2003, It has been NCAN’s mission to educate and support the Net Community. Our Chapter Support Groups are a vital part of this goal. They provide personalized support for NET patients, their caregivers and their families. NCAN has provided over 71 regional conferences for patients and caregivers over the last 18 years. National Conferences are held every other year, alternating between the east and west coasts. As multi-day events, the fellowship and friendships born at NCAN conferences have led to the formation of our Chapter Support Groups.

An NCAN Chapter Support Group may be just two members or it may be 50 plus members. It will likely include several patients and family members who are willing to share their experiences with Neuroendocrine Cancer lifestyles. Some groups are purely social, but most center around fellowship with educational opportunities too. Members may or may not share their stories, their feelings, and that’s ok. Sometimes you just need to be with others who understand what you are going through. A newly diagnosed patient can gain strength and encouragement. “Old timers” can offer experience and solace. Our group leaders facilitate the meetings to insure that confidences are always respected and judgement is withheld.

The camaraderie exchanged at Chapter Support Group meetings gives patients, their families, and their advocates the opportunity to get to know others living with similar challenges. They are places where lasting friendships are are built upon the sharing of common attitudes, interests, fears, and goals of living with a rare disease. They are places to extend a helping hand, and places to receive a helping hand. There, as part of our NCAN family, you will likely hear words of assurance: “Yes, I’ve been there too; I understand.”

Please visit us online to find the location of an NCAN Chapter Support Group closest to you. We look forward to welcoming you to the NCAN family, where absolutely no one fights alone.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

February 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Navigating Neuroendocrine Cancer is no small undertaking. As the saying goes, it takes a village – and rightfully so.

A NET cancer diagnosis is a huge, ongoing challenge. Many patients and experts suggest that living with a rare disease diagnosis requires as much time and attention as a full time job. It is essential for NETs patients to have a network and an understanding community to support them (and their families) when they need it most. That’s where NCAN comes in.

The Net Cancer Awareness Network helps to guide, support, and encourage NET patients and their families along their healthcare journeys.

Those initial emotions of shock and/or relief upon receiving a Neuroendocrine Cancer diagnosis are often quickly joined by feelings of isolation, confusion, and helplessness. The bewilderment does not go away quickly. Finding others who understand your disease; who live with your disease; who have hope for the future of your disease, can be the missing link to maintaining a healthy mindset and lifestyle. Public and even broad medical awareness of Nets Cancer is an ever evolving process, and can be overly challenging to attempt on your own.

There are Five basic ways NCAN can support you:

1) The NCAN Hotline: A 7 day a week, 9am-9pm hotline is answered by a Net Cancer patient or caregiver offering a listening ear, encouragement and resource information, 365 days a year. 1-866-850-9555

2) Website Resources: Netcancerawareness.org offers an overview of Neuroendocrine Cancer with resource links to major Research and Advocacy Groups for people with NETs. Also included is a Glossary to help make sense of the new terminology. A Calendar of educational and social opportunities is updated regularly. Previous Event Videos are stored here for easy retrieval. For inspirational or emotional support, Podcasts and a monthly Blog are found in the Resource Room. A Zebra Store even offers themed products to help raise awareness. If it’s information you want, this is where you can find it.

3) Conferences and Events: NCAN is well recognized for it’s regional and national conferences which bring Neuroendocrine Cancer patients, families, advocates and Nets specialist together for learning opportunities. Social events combined with fund raising efforts are also a part of our community. All Upcoming Events are listed on the website with links to easy registration. NCAN also participates in national medical trade shows and educational meetings; once again raising awareness for NETs.

4) Information Packets: are available and FREE for all Neuroendocrine patients who request them via the Website. These mailings offer a basic introduction to Neuroendocrine Cancer and some of the treatment options available.

5) Chapter Support Groups: The outreach efforts of NCAN have expanded to include over 33 Regional Chapter Support Groups for patients and their families. These groups meet multiple times a year and offer the opportunity to connect with, and learn from others who are living with Neuroendocrine Cancer.More information about these support groups and how to join is is available on the NCAN Website.

The awareness of Neuroendocrine Cancer is growing at a record pace due to increased diagnostic tools and a better informed public. The NCAN Community, our village, is always here for you if you need a little extra support. Don’t hesitate to reach out by phone or e-mail.

And remember, an essential part of our village is YOU. We need you to help us do what we do. So connect with one of our FaceBook Support Groups, join a local Chapter Support Group, and attend an NCAN event.

Someone is waiting to be inspired by your journey. Someone is wanting to become your friend. Someone is willing to make a connection that surpasses our common diagnosis, and offer support during challenging times. That someone can be you.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

January 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

My Plan A included a tall, dark, and handsome husband, 3 children, a dog, a cat, a woody station wagon, a two story house and a successful career. We would travel the world over, entertain weekly with fine china and crystal, and be respected in civic organizations. My check list of accomplishments have included marrying my high school sweetheart (who is only an inch taller than I), two sons, innumerable animals, and modest cars and homes. My career included 29 years as a small business owner, and we have traveled to far more places than I ever dreamed possible.

Check, check, and check! Everything was going according to plan. Life was good. Then 2016 arrived with a Neuroendocrine Cancer diagnosis and a need for a Plan B. Surprise!

I quickly learned to review, remodel and revamp my Plan A. And, you know what? Plan B is pretty great!  Sure, it has demanded some modifications on my goals and activities. I have learned that a successful Plan B is most oftentimes a result of some good luck, thoughtful planning, and an excellent attitude.

America’s Oldest Sweetheart, Betty White, turns 99 years old this January. You might be surprised to learn that her decades long career in television is a result of a Plan B. Yes indeed, with 21 nominations and 5 Emmy Awards, Betty White has made the most out of her Plan B. Her first choice of a career, was to be a Forest Ranger! But women were not eligible to become Rangers at that time, and so she turned to acting. For all of us, I say, “Thank Goodness!”

In a recent interview focusing on her impending birthday and announcing her NEW television series, Ms. White shared some thoughtful advice relevant to our Neuroendocrine Community. She says a sense of humor is necessary and not to take yourself too seriously. “You can lie to others-not that I would-but you cannot lie to yourself”.  She encourages others to not dwell on the downside and to stay focused on the positive side of situations. “Being negative takes up too much energy.”

So, let’s take Betty’s lead and embrace our Plan B’s with a smile and a positive attitude. You never know where it could lead you. And if you need a little help putting together a Plan B, C, or D don’t hesitate to CALL US or E-MAIL US. That’s what we are here for.

Happy 99th Birthday, Sue Ann Nivens and Rose Nylund (AKA Betty White), from all of us at NCAN!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

December 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

I make lists. I am really good at making lists. I delight in crossing items off of my lists. I make lists so that I can make plans.

I had made big plans and then Neuroendocrine Cancer happened. Some of the items on my lists will not get crossed off. So I made new lists and new plans have followed.

I made plans and then 2020 happened. Lots of items did not get crossed off my lists this year. Some of those lost plans won’t really be missed. Others, I am still grieving.

So, I made a “Naughty and Nice” list for 2020. It was an afternoon well spent, because I found, tucked away among the missed opportunities and failed plans, that many nice events indeed did happen in 2020. I no longer want to erase this crazy year from my life story. The pain and sadness I have experienced has allowed me to take inventory of my values. Repeatedly during this past year, I was reminded, once again, to celebrate small joys as much as the giant happy moments.

Now, I will begin to make my lists and plans for 2021. In a world with so many current unknowns, I want to make sure I include items which I know are obtainable.

A sign hanging in my local oncologist’s office offered these tidbits which really spoke to me. I hope you will consider making them part of your To-Do List for 2021.

1). Laugh every day—it is like inner jogging.
2). Silence is often misinterpreted, but never misquoted.
3). Faith is the ability to not panic.
4). Do the math—Count your blessings
5). A grudge is a heavy thing to carry.
6). We do not remember the days, but the moments.
7). Nothing is real until you experience it; otherwise it is just heresay.
8). It is alright to sit on your pitty potty every now and then; just make sure you flush when you are finished.
9). There is no key to happiness. The door is always open.
10). Surviving and living your life requires courage. The goals and dreams you are speaking require courage and risk taking. Learn from the turtle, it only makes progress by sticking its neck out.

Happy New Year and Happy List Making from all of us at the Net Cancer Awareness Network. Here’s to a very “nice” 2021!

For more bits of wisdom for your list, check out Inspiration Corner.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

November 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Whichever holiday you celebrate in December, there are multiple references to light. Many writers refer to the coming weeks as the Season of Light, perhaps to remind us to look toward all that warms and illuminates us as we head into the winter months. With 2021 on the horizon, I thought I might shine some reflective light on this past year.

I don’t know about you, but I’ve lost sight of some of my anchors this year. You know, the daily routines and annual events that mark another visit around the sun. Missed Birthdays and wedding celebrations. Summer vacations and visits with my grandchildren that didn’t happen. Looking back on this bizarre year of social distancing, I also realize I have spent a lot of extra time “in my head.” Some of that “head time” has been constructive and creative, (ask me about my “Taking my linen napkins out of the freezer and finally ironing them project”) while other times, not so much.

In my not-so-constructive moments, I can become rather fretful or regretful, which tends to dim my own inner light. At those times I am especially grateful for the people in my life who check in from afar. Sometimes they show up by phone or by FaceBook. Other times, with a snail mailed card or an unexpected gift. Regardless of delivery, I’m always so grateful for those who share their light, until I can find my own again. And with the expanse of social distancing all around us, I am especially grateful for our NET community. The outreach of support and encouragement to one another has increased notably this past year. And my hope for all of us is a brighter 2021! May our Neuroendocrine journeys continue to deepen our appreciation for life, and may we always continue to be a light for one another.

Check out the NCAN Zebra Store or the VIP Shopping Page for great holiday gifts to brighten your zebra friends’ and family’s holidays. In doing so, you also return support and spread the light to the efforts of the educational and awareness efforts of NCAN.

Get free shipping November 27 – December 4 using the discount code ZEBRAFRIDAY.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

October 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

This year, I am finding particular comfort in the observance of Neuroendocrine Cancer Awareness Day. With 2020 being the most bizarre year on record, I see November 10th as a beacon of hope. This date is a constant in our calendar year. Many of us will wear our zebra striped clothes and accessories. I expect to see hashtags and profile picture speciality frames aligning our identities with zebras around the world. And, I imagine there will be a greater number of us this year evaluating our personal goals about increasing awareness of our rare disease.

In the four short years since my own diagnosis, I have seen a measurable amount of information and support increasing  from groups outside of our speciality organizations. I get fewer “deer in the headlights” looks when I share my story. The expanse of knowledge about NETs is growing which means additional research, treatments, and diagnostic tools are also increasing. This is great news and worthy of celebration, but we can’t stop there. We all need to do our part to continue to increase awareness of Neuroendocrine Cancer, pushing our cause forward, reaching for earlier diagnosis, and dare I say it, a possible cure.

To paraphrase a quote from Betty Friedman: “Having Neuroendocrine Cancer is not lost youth, but a new stage of opportunity and strength.” Let’s use that opportunity and strength to raise awareness and to further support our zebra community.

• What can you do?
• How much are you comfortable sharing?
• What actions can you take to engage others?

No effort is too small, and all efforts have a ripple effect.

Like so many other 2020 events, NCAN’s Strides for Stripes Awareness Walk will be a virtual format this year. Many of us will be participating by walking together with our “socially distant pods” and posting photos and/or videos on the NCAN Facebook page using #ZebraWalkAcrossAmerica. We hope you will JOIN US on November 8th and observe NEUROENDOCRINE CANCER AWARENESS DAY by Walking the Walk and Talking the Talk!

We hope to see you there!

REGISTER FOR VIRTUAL WALK HERE

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

September 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“Peace is not something you wish for;
It is something you make,
Something you do,
Something you are,
And, something you give away.”

— John Lennon

As you grow along your journey and meet other Neuroendocrine patients, you begin to see certain patterns of behavior emerge. On any given day, we might be a survivor, a warrior, or even a victim. Some days, we will evoke all 3 personalities!

The days when I feel most like a victim of this disease are the hardest. These are the days I do not recognize my old self. These are likely the days when my fits of uncharacteristically Carcinoid Rage appear. These days make me feel sad, frustrated, remorseful and so very out of control.

On my warrior days, I feel accomplished! I complete the house hold chores; I successfully make wise food choices, and I allow time to rest when needed. My volunteer work is now, happily, my office work. My agenda of medical appointments sometimes doubles as my social calendar. I feel like a conquerer when I can boldly cross items off my to-do list. I complete phone calls and correspondence in a timely manner, and I feel like my old professional self!

It is the survivor personality, however, that I strive for each and every day. It allows me to crawl through the victim days and rejoice during the warrior days. It seems to me that the survivor mentality is the hardest for many patients to achieve and maintain. To be sure, I do not consider myself a survivor of Neuroendocrine Cancer since my particular prognosis will never be NED. But my goal instead is to be a Survivor of Living Well with Neuroendocrine Cancer. The majority of my days, I am successful thanks in part to the quote above and to the support of the NET Community.

Coming to terms with a NETs diagnosis is a process of growth. Accepting it and modifying your life to accommodate it are important for a survivor mentality. To live well with our disease we must find a way to do more than wish this life away. Embracing this identify in some fashion, acting upon the necessary changes, and realizing your potential to grow with it will almost certainly lead you to an inner state of acceptance. And with that survivor’s mentality, you can share that peace with others and that’s when self-healing begins.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

August 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“I’m new to this group… am feeling scared and alone.”

These were the words of a newly diagnosed patient whose first post jumped off the NCAN facebook page at me one morning this past summer.

Before I could put my coffee cup down to respond, those little dots began to appear. Someone else was replying at that very moment. Within minutes, the comment counter showed over 10 replies; and then quickly that number doubled. This patient’s introduction was so simple and clear. Everyone identified with her plea, and everyone wanted to help. I added my brief (and hopefully) reassuring greeting. Over the next hour or so, this newly diagnosed NeuroEndocrine patient was offered support, affirmation, and friendship by over 100 new friends who said ‘I know just how you feel’.

The response to learning you have cancer is never a shrug of indifference. Learning you have a rare cancer is mind boggling. If you are fortunate, you quickly realize the need to become your own best advocate. We attempt to devour medical data to educate ourselves, and we aim to collect anecdotal patient stories to learn how to cope with our new identity.

I attended my first NCAN conference 6 weeks post debulking surgery in 2017. I’ve since added 2 more. Each time, I have learned volumes of medical data from the presentations and added cherished friends to my Neuroendocrine family. Last month, NCAN was able to offer its first of three virtual conferences for 2020. I was amazed at the near seamless transition from in person to virtual. I knew we would continue to hear the informative presentations by the NETs specialists and advocates, but would the feeling of companionship and solidarity with other patients be expressed? Heck yes! This NCAN conference delivered again just as they have done many times before. Many patients shared sentiments so similar to those above as they visited in the chat rooms and the zebra lounge. A flurry of emails and text messages following the conference supported this as well! At the end of the day, our attendees had been educated and community supported.

Another Neuroendocrine patient has said “If you are working on something exciting that you really care about, you don’t have to be pushed. The vision pulls you in.” — Steve Jobs

And so it goes with the staff and volunteers at NCAN. They have a vision to educate and promote awareness about our rare disease. In our year of 2020, their vision had to adapt, and it continues to deliver. The excitement generated by these folks gives hope and empowerment to all attendees. The next Virtual NCAN Conference is scheduled for October 17. The final 2020 conference will be November 21. Both will have different topics and presentations. Both will have numerous opportunities to visit and connect with other patients and caregivers. Both are not to be missed. Please come join in our vision to increase Neuroendocrine Cancer awareness and REGISTER TODAY.

I’ll see you there!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

July 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Recently, I read an online article which quoted a University of Michigan scholar, Jane Dutton, who has studied the roles of the “invisible workers” within our health care systems. Ms. Dutton states, “It only takes 40 seconds of a caring interaction to change a patient in a way that affects their whole health trajectory”.

This reminded me of a nurse’s aide caring for me late one night following my debulking surgery. I was having trouble sleeping with all the racing thoughts of what was to come. She was a very young girl, probably in her first job. She offered to wash my hair, hoping to comfort and soothe me enough so I would finally fall asleep. I was skeptical, but her offer was better than lying awake with my mind spinning. She was with me less than 30 minutes, but her small act of kindness remained far longer. After she left, I remember feeling human again. I felt a new sense of hope that I would recover. Yes, from simply washing my hair.

One of the silver linings of a Neuroendocrine Cancer diagnosis, is our active and supportive Neuroendocrine Community. We are strong in our ability to empathize with other patients who share our frustrations with a poorly recognized disease. We all have at least one story of being misunderstood or misdiagnosed. We’ve all felt dismissed by physicians or family and friends. Once you have walked down our path to a correct diagnosis, most NETs patients are eager to help others navigate their journey with less frustration.

40 seconds. Less than the time it takes to brush your teeth.
40 seconds. Less than the time it takes to leave a typical phone message.
40 seconds. Less than the time it takes to make tea.
40 seconds, even from an invisible source, can have a tremendous impact on someone’s well being!

So, let’s continue to encourage each other in NET Community fashion! Reach out to a patient in need, answer a question, share your story, like a photo, or attend a Chapter Support Group Meeting. Even a simple heart, or thumbs up emoji can leave both the sender and recipient smiling.

And remember, if you find yourself needing 40 seconds, or more, please don’t hesitate to CALL US.
It’s what we are here for!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

June 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

When you live in the world of having a rare disease, big time recognization and public awareness moments are few and far between. Publicity oftentimes accompanies a public figure’s death announcement and is frequently inaccurate. Neuroendocrine Cancer patients are dealt the double blow of a chronic illness and inadequate recognition among the medial field and the general public.

Beginning this month, our Nets patients are getting some much needed and appreciated awareness in a worldwide video advertisement by Ipsen Biopharmaceutials for Somatuline Depot (Lanreotide). Lanreotide is one of the most frequently prescribed medicines for a newly diagnosed Nets patient. It’s two most recognized benefits are slowing growth of tumors and management of Carcinoid Syndrome symptoms.

Why is this exciting news for our community? In the US, approximately 12,000 patients annually receive the news of a NETs diagnosis, and it is frequently accompanied by the statement “You’ve probably had this cancer for 5-10 years already.” Yet, Neuroendocrine Cancer remains classified as a rare disease (less than 200,000 diagnosed cases in the US). Consequently, we lag behind other chronic conditions in terms of education, research, and available treatments. For Ipsen Biopharmaceuticals to support our rare condition with this advertising project tells us that the potential for quicker and more accurate diagnosis is in our near future.

Take 1.32 minutes to view the commercial and share this heightened awareness with others. Increased conversations and recognitions benefit us all. We are certainly headed in the right direction, which is cause to celebrate.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

May 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

At the age of 88, my otherwise healthy father, pictured above, was declared legally blind. My parents sold my childhood home and moved to a new town near my young family. After spending their entire married life together in the same home, in the same small, close-knit community, it was to be a tremendous adjustment. My parents handled it like champs! Most hurdles were managed quickly except, finding a new church family. They wanted one similar to the one they were reluctantly leaving behind, the one where they had volunteered in almost every capacity. Finally, my parents announced they had found their new church home!

The secret combination of the right fit was that my parents, even though well past their “prime years”, needed to feel needed. They still wanted to be able to contribute to their community. Even now, I can still see the delight in my father’s eyes as he proudly claimed that he had found his new position. “I will be one of the multitudes!”, he exclaimed.

I share this story with my Neuroendocrine Community because so many of us have been reduced in some capacities of our former selves. Jobs, relationships, and expectations are frequently disrupted as we learn to live our new Nets lives. But, we too, can be a viable, contributing part of the Multitudes! NCAN encourages you to be a part of our action for increasing awareness for our rare disease. We can educate ourselves about our disease and share that information, and our experiences with others. We can be a part of the effort to improve and support continued research for Neuroendocrine Cancer.

Since 2003, NCAN has led our Nets community in bringing emotional support and accurate information by providing an information hotline 365 days a year. Their yearly regional and biennial National Conferences provide presentations and interactions with respected Nets physicians, technicians, and hundreds of nets patients. Their network of Regional Chapter Support Groups now reach from the East Coast to the West Coast.

2020 is providing the springboard for more NCAN opportunities for you to be one of our multitudes. Three regional conferences are scheduled for fall 2020. Our Zebra Gala will be held July 25th in Charlotte, NC, and our Chapter Support Groups are actively embracing the world of virtual meetings. In July, NCAN will announce the details and open registration for our next National Conference to be held in March 2021 in Atlanta!

Please visit the NCAN website and check out the Resource Room and Upcoming Events to see how you can make a difference by becoming one of our multitudes.

Happy Father’s Day from all of us at NCAN.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

April 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Early this morning, as the news outlets reported the passing of actor Irrfan Khan, I was immediately drawn to my recollections of his twitter account in March 2018 in which he disclosed his Neuroendocrine Cancer diagnosis.

“Sometimes you wake up with a jolt with life shaking you up… In trying times, please don’t speculate… Till then, wish the best for me!”

By June 2018, he shared more details of his diagnosis, confirming speculation that his Neuroendocrine Cancer was indeed a High Grade Neuroendocrine Carcinoma. Our collective NETs Community began to follow his media accounts more closely. It is an odd and lonely feeling to publicly share a cancer diagnosis. Not everyone can do it; not everyone is comfortable being so exposed. Not every patient can face the stares and questions which follow a incurable disease disclosure. Not everyone can address the research, education, and advocacy you must develop to successfully embrace a rare disease diagnosis. And yet, here was Irrfan Khan, at a high point of his acting career, sharing publicity and passionately his story which was certain to contain a poor prognosis.

The Times of India published his “A Note from London”, written while he was hospitalized for treatment in 2018. There, he talked about his fears, his concerns, his intentions, and then his absolute realization of this unpredictable turn his life had taken. And in that realization, he shared: “For the first time, I felt what ‘freedom’ truly means. It felt like an accomplishment. As if I was tasting life for the first time, the magical side of it.”
I cannot help but wonder if his admission of this unwelcome guest in his body, his research of his disease and those most capable of treating it somehow aided him in his acceptance of his fate. In February 2020, he shared a statement to accompany the release of his now final film, in which he concluded, “And we always have the choice to stay positive.”

And that is how I shall remember Irrfan Khan most of all. As an accomplished actor to be sure, but more importantly, as a wise man who realized that the life he had envisioned was not going to be played out as he had intended. One who surrendered his expectations into a realization that life IS what you make it.

We at Neuroendocrine Cancer Awareness Network extend our deepest condolences to the family of Irrfan Khan along with a genuine and heartfelt appreciation for bringing public awareness to Neuroendocrine Cancer.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

April 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Perhaps you remember Mr. Rogers’ Neighborhood on TV from your childhood? Perhaps you raised your children watching Mr. Rogers? Whatever your connection, Fred Rogers, with his constant calm and comforting assurance, transports us back to a simpler time.

Mr. Rogers once shared: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’”. His mother’s calming advice is timeless.

And just like that, we find ourselves in 2020 surrounded by a constant stream of scary and uncertain news. Mrs. Rogers’ words are as relevant today, as they were then. I take great comfort in her words, and am always searching for the good in everything and everyone. Amid the world’s current turmoil, I see the helpers everywhere. Doctors, nurses, EMTs, pharmacists, store clerks, safety officers, and so many others who are putting themselves in harm’s way for the benefit of others.

These helpers need our help, as well. By social distancing, and reducing the spread of the Coronavirus, we become helpers ourselves. By checking in on family, friends and neighbors, either by phone, letter, or social media, we help. We can transform our physical separation into a an effort of caring and connecting with others. By sharing our concern and conversation, we become the helpers.

Mother’s Day, on May 10th, is going to be a different type of celebration this year. Let’s honor our mothers, our very first helpers, by remembering the words from Fred Rogers and his mother. Let’s be a helper to others.

Wishing you all a safe and Happy Mother’s Day.

Celebrate your mother from afar with a gift from the NCAN Zebra store, or an event ticket that can help NCAN continue their important mission of educating ad supporting the NET community.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

March 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“April showers bring May flowers”, or so the old saying goes.

But sometimes, the showers persist to become unrelenting storms which darken our lives and our outlooks. They cloud the promise of anything as bright and comforting as springtime flowers. We, as Neuroendocrine Cancer patients and caregivers, are quick to realize that our emotional health can take a beating as well as our physical health. It is important for us to find our calm within these storms.

What do you do to identify the beginning of an emotional storm as you cope with your diagnosis?
What tips and strategies can you utilize to keep your worries and fears in check?
What can harness a setback or disappointment from turning into a full blown emotional crisis?
What can you do to ride out your storm?

Two of the most universal techniques used to nurture emotions are exercise and music.
A brisk walk or gentle yoga can brush away cobwebs. A favorite song can soothe or invigorate, and can transport you back to happier times.
Visual tools can also be helpful: Creating art or just admiring it. Reading a book or keeping a journal can be a balm for many of us.
Practicing gratitude can help find perspective on a difficult situation.

We, alone, control our own happiness, and the importance of focusing on the positive can not be ignored. Keeping mindful of our own mental health is essential. We need to be diligently aware of triggers which can turn small showers into harmful storms. We must develop skills to redirect our attitude when the blues start creeping in. Endurance: the ability to bear up under hardships, is essential. Resilience: the ability to bounce back after a disappointment or setback, needs to become our watchword.

As I continue to tweak my own skills for dealing with the inevitable emotional roller coasters that come with Neuroendocrine cancer, I have learned there is no one answer for every situation. Fitful sleep can be harnessed with a favorite album from college for one situation or a cherished memory of a lakeside vacation, for another. And when the mental burden of an incurable disease seems to rob me of my sanity, I will remind myself that even on my worst days, there is always something for which to be grateful.

If you or someone you care for need a little extra support please don’t hesitate to call the NCAN Hotline at 1-866-850-9555. That’s what we are here for.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

March 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Let’s talk about the elephant, I mean zebra in the room. COVID-19 and NETs don’t mix.

And while we are looking to the CDC and our individual health care providers for guidance and monitoring, it’s also important that we, as a Neuroendocrine Community, use our internal barometer to calculate our responses to the ever changing health events going on at this time.

As we assess our Neuroendocrine Cancer position of having at least one high risk qualifier, it is important that we also monitor our mind set. Structuring our thinking to avoid the panic in Pandemic is essential. While “watch and wait” is frequently perceived as a negative response with our NETs treatment plans, in light of the Coronavirus, adopting an “active surveillance” stance, might not be a bad way to go. Positioning ourselves to be able to respond with clarity, rather than panic and fear, would be the smarter choice.

My own personal stance has been one of nonchalant awareness. I had purchased household provisions 2 weeks ago, and was aware, informed, and prepared. Then, one phone call had me reassessing my situation with the realization that I am in 3 high risk categories for this disease, not 1. So, in the blink of an eye, my reality became crystal clear. And in that moment, it was time for me to social distance myself.

Self quarantine or social distancing might not be right for everyone. For some, it’s a luxury they can afford. For others, an absolute necessity. Each of us will need to choose for ourselves. One thing we know for sure, is that all of us will be effected by Coronavirus’s ripple effect. And, as we consult our individual barometers, let us also be mindful of the ripple effect of compassion for those who do not necessarily agree with our decisions. Kindness, a cure for many ailments, is infectious also.

Take care of yourselves. And if you need some extra support feel free to call the NCAN Hotline at (866) 850-9555.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

February 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

True Confession:
I do not know much about basketball other than the frenzy of the collegiate season ending games in March each year. But I am very familiar with the legacy of Coach Pat Summitt. Coach Summitt is best known for winning more games than any other NCAA Division One basketball coach, male or female, at the time of her retirement. She almost single handedly elevated the game of women’s collegiate basketball into a position of national recognition. And if that isn’t impressive enough, in her 38 years of coaching at the University of Tennessee, her players had a 100% graduation rate.

In reading any of the books written about Pat Summitt you will learn a handful of basic truths about her:
1. She never backed down from a challenge.
2. Perseverance could have been her middle name.
3. She knew how to live in the moment.
4. She was revered among her fans and competitors for her no nonsense approach to life and coaching.
5. Her many quotes and quips are legendary.

Many of Summitt’s quotes are as applicable to living with Neuroendocrine Cancer as they are to competitive coaching and her 5 year battle with Alzheimer’s disease. I’m sharing a few of my favorites in hope that they give you a winning edge in your quest to live your best life possible with Neuroendocrine Cancer:

“It is what it is. But, it will be what you make it.”

“Attitude lies somewhere between emotion and logic. It’s that curious mix of optimism and determination that enables you to maintain a positive outlook and to continue plodding in the face of the most adverse circumstances.”

“Attitude is a choice. Think positive thoughts daily. Believe in yourself.”

“Left foot, right foot, breathe.”

Visit Inspiration Corner for more quotes.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

January 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

50 years ago, in 1970, Stephen Stills released his biggest hit single “Love the One You’re With”. A year later, the Isley Brothers covered the song and their version quickly became an anthem for high school garage bands through out my youth. I loved the rhythm; I loved the refrain “if you can’t be with the one you love; Love the one you are with”, which became my adult adaption of making lemonade out of life’s lemons. But the remaining lyrics never stayed with me, until now.

Now, as a middle aged Neuroendocrine Cancer Patient who has had to refocus certain aspects of my life, the lyrics are taking on a new meaning. The trauma of our diagnosis, mental and physical, takes a toil on our self esteem. Our support groups and message boards periodically overflow with our fellow patients’ struggles to reconcile their old lives with their new identities as patients with a chronic illness.

We have to make concessions for increased fatigue and decreased interest in hobbies or friendships. Reduced earning potentials, greater dependency on other suddenly become more commonplace. Our former selves begin to fade and morph into personalities we previously could not have imagined. It is no wonder that our self love can take a devastating direct hit when dealing with an incurable cancer diagnosis.

This February as you plan ways to be thoughtful to your Valentines, I hope you will take the time to relearn to love your new you. Life coach Karen Salmansohn has coined the phrase “Kindsight” to encourage readers to review their lives past and present with kindness. Don’t look back focusing on regrets, but look upon your life with the same kindness you would shower upon a friend. Introduce your old self to your new self. Search for those most desirable traits that remain. Focus on your new and developing abilities. Your new self is neither better nor worse than your old self….it is simply, undeniably, where you are presently.

As Stephen Sills intended to impress upon us, there is a good side to every situation.

“Don’t be angry, don’t be sad
Don’t sit crying over good things you’ve had…

Well there’s a rose in a fisted glove,
And the eagle flies with the dove
And if you can’t be (with) the one you love,
Love the one you are (with)”

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

January 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Keeping New Year Resolutions, giving up pleasures for Lent, and training for 5Ks all meet the same fate in my life. Instead, as I look toward 2020, I prefer to focus on the positive, the obtainable. What can I add to my life instead of what to take away? How to improve my lifestyle in a manner that helps me and others.

With my apologies to “Late Night with David Letterman”, I give you “The Top Ten Reasons to Join an NCAN Chapter Support Group”!

#10. Black and White is always fashionable.

#9. Zebras are known for their unique and distinct stripes.

#8. Zebras have excellent endurance.

#7. NCAN has been providing educational and emotional support to NETS patients since 2003.

#6. NCAN Chapter members develop a unique support network of patients helping patients. We lift each other up for NETS and other concerns. No one here fights alone.

#5. Sharing problems with friends can relieve stress by 80%.

#4. Zebras are very protective of their tribes.

#3. Everyone wants to be part of a Dazzle.

#2. Where else can you find so many friend’s genuinely interested in your incisions and surgeries?

And the number one reason you should join an NCAN Support Group:

(Drum roll please…)

#1. It’s the friends we meet along the way that help us appreciate the journey.

JOIN an NCAN Chapter Support Group Today! It there isn’t one in your area, consider STARTING ONE.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

December 1, 2019

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Relief? Denial? Shock?

Chances are you experienced at least one, or all, of these emotions when you first learned of your Neuroendocrine Cancer diagnosis. My husband and I were most decidedly in the last category. My parents had both lived healthy lives well into their 90’s, and I had no other close relatives with even a hint of an incurable disease. As the shock began to sink in, I had to craft a way to tell our adult sons, 1000’s of miles away. My attitude toward this news would become their attitudes. My can do, positive approach would be mirrored in their minds. I would not let them see me sweat, at least not yet. Carl, as I named my cancer, joined our family in August 2016.

Carl is a lot like the obnoxious, free-loading, Cousin Eddie from National Lampoon’s Christmas Vacation. We surely did not invite Carl, our family’s Cousin Eddie. His presence is more troublesome than possibly imaginable. He is uncouth, blissfully unapologetic about his behavior, and he quickly wears out his welcome. And yet, underneath his simple minded, free loading behavior, Cousin Eddie had good intentions.

So oftentimes, we Neuroendocrine Cancer patients dwell on all that our disease has taken away from us. It is easy to do for we have all had to make sacrifices of some magnitude. Some goals are put on the back burner, others must be exchanged for something less satisfactory. And there are the many losses that we can never reclaim. But, I encourage all of us to look for the unexpected gifts that may have also arrived with your diagnosis. The courage to face new fears with hidden strengths; the ability to sit quietly and enjoy the simple presence of another’s friendship. New found empathy and compassion for others are frequently sited as silver linings of a chronic illness. Just as Cousin Eddie’s totally misguided attempt to kidnap Clark’s boss finally provides Clark with his Christmas bonus, my cancer Carl has given me a chance to slow down and savor time with friends, a good book, a sunset, a sunrise. Carl has provided me with hard questions, and the mindfulness to find the answers. Carl foiled my plans to return to a career I loved, but he has opened doors to new friends and new outlets of expression. Carl’s presence in our family has presented us with several challenges, but also reinforced our values and devotion. He has made us stronger individually and collectively.  He has not ruined our sense of humor, and we no longer look a gift horse in the mouth.

I hope this holiday season finds each of us the giver and the recipient of unexpected and grateful gifts.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.