Neuroendocrine Cancers

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15h

I Hate My Life

Yeah I really do hate it. My horse died a year ago and I’m still not over the loss. 4mos. after she passed, my parents and I lost our beloved maltipoo dog. Now my dad is on hospice because of neuroendocrine cancer and he has a few weeks to a month left. Ever since my horse died, I have been isolated and rarely ever leave the house. My dad has been sick for almost a year so he is part of why I rarely left the house and now he can’t be left alone because he is bedridden. I don’t have any friends and no one I keep in touch with. I can’t write letters anyway because I have nothing to write about. I’ve gained a ton of weight since losing my horse. I feel shame for my appearance, my lack of social skills, and my clothes. I feel unimportant and that nobody even knows I exist. I don’t see things improving anytime soon so my only choice is to do what I do best; suffer. My life won’t always be hell, it might get better eventually.

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Chronic Fatigue Syndrome/ME. 1y

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How long did it take to get your #ME diagnosis?

Recently, #MEaction asked their community how long it took to receive their diagnosis of myalgic encephalomyelitis (ME). From over 400 responses from across the globe, the average time from their sample of responses was over 8 years to get a diagnosis.

I’m sure this didn’t surprise anyone in our community. I remember the frustration I felt going from doctor to doctor to doctor. Then 5 years later, I finally got a diagnosis from a doctor whose wife also had #MECFS . A year later I also got a Fibromyalgia diagnosis from a different doctor. And, in 2021, I was diagnosed with an aggressive form of a rare cancer called neuroendocrine cancer. It’s been hard to deal with all three because the symptoms overlap.

How long did it take you to get a diagnosis?

#MillionsMissing 2024: Teach ME, Treat ME

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#MillionsMissing 2024: Teach ME, Treat ME

Advocate for medical schools to Teach ME, and major hospitals to Treat ME

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absolutelymelanie

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@absolutelymelanie

NeuroendocrineCancers 2y

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Today, I won a battle against cancer.

#NeuroendocrineCancers #Cancer #Undiagnosed #ChronicIllness #ChronicPain #Anxiety #Depression

After having major abdominal surgery by a local superhero in an incredibly non-invasive way, I am at home resting comfortably with my family less than 48 hours from leaving the recovery room.

The fight isn’t over, and we’re not stopping (just resting and recovering for a while). I didn’t do this on my own – I have had amazing role models, I have an incredible support system, an amazing army of prayer warriors, and have found the most outstanding healthcare team available - and they’re here, the majority of my healthcare team, in my beloved hometown.

I had to fight VERY hard and diagnose myself. And finally found someone who proved me right and saved my life.

So glad today to be, well, absolutely me.

With much love and endless gratitude,

Melanie

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absolutelymelanie

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@absolutelymelanie

Undiagnosed 2y

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There was some comfort in being undiagnosed.

Yesterday, I learned that I have stage IV neuroendocrine cancer. In less than two weeks I will be having surgery to remove a good portion of my intestines, my gall bladder, and possibly my spleen. That will not remove all of my tumors. We won't even know how many there are until they open me up.

In July, I will finally be seen by a cerebrovascular neurologist at Mayo Clinic to have the lesion in my brain evaluated - as I also have a Chiari malformation, it is unknown if this is related to that, my cancer, or something else.

This will be a long road. I have a chance of beating this. There is much more to come - genetic testing, what else might be going on, targeted therapies - a lifetime, what remains of it, of medical treatment.

Today, right now, tomorrow, the next week, we're just huddling as a family and, well, that's it.

And guess what? My cancer is so rare and misunderstood (like me!) that I'm still a Zebra... that's the neuroendocrine cancer symbol and ribbon pattern. Yea, me.

#Undiagnosed #MightyTogether #RareDisease

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TinyChicken78

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@tinychicken

ChronicIllness 3y

I can't do this anymore....fight is gone.

I can't fight anymore. I am alone and feel so hopeless and scared. #ChronicIllness #Depression #Anxiety #Fibromyalgia #heartfailure #HeartAttack #Neuroendocrinecancer #NETCancer #Cancer

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TinyChicken78

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@tinychicken

ChronicIllness 3y

I can't do this anymore....fight is gone.

I can't fight anymore. I am alone and feel so hopeless and scared. #ChronicIllness #Depression #Anxiety #Fibromyalgia #heartfailure #HeartAttack #Neuroendocrinecancer #NETCancer #Cancer

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Kelly Baughman

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@kellybaughman1

Multiple Health Challenges 3y

Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

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Kelly Baughman

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@kellybaughman1

Multiple Health Challenges 3y

Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

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Kelly Baughman

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@kellybaughman1

Christians on The Mighty 3y

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Thank you for the add! #chronicallyillchristian

Hi Everyone, I’m new to the group. I am happy to find a group like this on The Mighty! Living with chronic illness is hard & I am feeling lonely & isolated. I need to know there are others like me. #MyalgicEncephalomyelitis #NeuroendocrineCancers #Christian #lonely