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A MyMyelomaTeam Member asked a question šŸ’­
Connecticut, CT
February 18
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Answer Summary

Members opened up about navigating multiple myeloma largely on their own, with many describing the unexpected loneliness that comes when... Read more

Members opened up about navigating multiple myeloma largely on their own, with many describing the unexpected loneliness that comes when family or friends don't know how to help or gradually fade away despite good intentions. Several members shared practical ways they've built independence and safety, including hiring caregivers, installing grab bars, arranging medical transportation, connecting with church communities, and relying on online support groups that offer understanding at all hours. A recurring theme was finding strength through faith, inner resilience, and the realization that doing it alone doesn't mean being abandoned but rather discovering depth within yourself and connection with others who truly understand.

A MyMyelomaTeam Member

Just to share this story which is happened to me šŸ™

There was a woman named Debi who carried her appointments in a small folder and her courage in a quiet heart.

When she was first told she had Multiple Myeloma, the room did not collapse. The sky did not fall. The world outside the hospital kept moving — cars passed, people laughed, someone somewhere argued about dinner.

But inside her, something shifted.

At first, she waited for the wave of support everyone talks about.
The daily check-ins.
The friends who would sit beside her in clinics.
The family who would say, ā€œWe’ll handle this together.ā€Some came.Some didn’t.
Some didn’t know how.

And slowly she realized: much of this road… she would walk herself.

She learned the rhythm of hospital corridors.
She memorized the smell of sanitizer.
She knew which chair in the infusion room was the most comfortable.
She learned how to drive home quietly after hearing lab results that sounded like a foreign language.

On the outside, she looked composed.
On the inside, she negotiated fear like a diplomat.

At night, when the house was quiet, she would sometimes ask the ceiling:
ā€œAm I really doing this alone?ā€
But here is the truth she did not always see:
She was not alone in the way she thought.
There were others — in different cities, different countries —
sitting in their own quiet rooms,
checking their own lab portals,
taking their own medication with water before bed.
They were not in her living room.
But they existed.
And slowly, Debi discovered something surprising.
Strength does not always arrive as a crowd.

Sometimes strength arrives as:
A nurse who remembers your name
A stranger in an online group who replies at 2am
A doctor who listens one minute longer
A prayer whispered alone
A quiet voice that says, ā€œOne more day. Just one more steady day.ā€

She began to understand:

Doing this ā€œaloneā€ did not mean abandoned.
It meant she was discovering her own depth.

She still wished, sometimes, for someone to hold her hand in the waiting room.
But she also realized something else.She had become someone who could hold her own hand.

And maybe, somewhere in this story, there was also someone reading it, thinking:

ā€œBefore I felt the same… but now

And that is how lonely journeys slowly become shared ones.
Even if we never

February 18
A MyMyelomaTeam Member

Yes. It’s hard having no one you can count on. The friends who said ā€œCall me anytime,ā€ don’t call anymore. That being said, I think there are people who when asked will help. They just don’t know how. Today is Ash Wednesday. When you get ashes they say ā€œRepent and believe in the Gospels.ā€ Well, I believe. I believe God is with me in this awful journey. He is where I find peace. It’s He who I thank for blessings. You are not alone. God is with you. Your MyMyelomaTeam is with you,
Knowing my family is in denial, I will be the one who hires a caregiver for myself. I already have a walker when needed, grab bars in the shower, non-skid mats on the floor of the shower, and a long grab bar in the water closet. I have a long list of medical transportation phone numbers, ready for when video visits are not enough. I can order food on-line from the grocery store or restaurants. Sometimes reaching out to your Church brings help. My cousin who was bed ridden and had cancer breaking her bones was blessed with people from her Church coming and taking care of her every day. Her hospital bed was in the living room, and the front door was left unlocked so they could enter. Her husband had to work, and the kids were still in school. Even when our loved ones are in denial and refuse to help, someone will. You have to reach out and tell them what you need. You will be blessing them as they care for you.
Paula🌹

February 18
A MyMyelomaTeam Member

Inner strength at a high level, even when you're in a lousy mood. It is of paramount importance especially when dealing with our situation by oneself. Fortunately for most on this site, they have a go to caregiver.
The psychological assistance supersedes the physical help.

February 24
A MyMyelomaTeam Member

I think some times other people simply don’t know ā€˜how’ to react. They may be there for us but simply not know what to do. Much of this journey is traveled alone as the quiet strength & resilencence comes from within🄰

February 24
A MyMyelomaTeam Member

I've learned through this journey that the people who are true friends, are the ones that call, txt, or offer to help. There are some who I thought were true friends, that said "I'm so sorry" when I was initially diagnosed, then I never heard from them again. Don't need friends like that. There's online friends here that I've never met, but they are here with kind words and understanding. We've got each other's backs. God bless us all.😊

March 11

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A MyMyelomaTeam Member asked a question šŸ’­
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what

A MyMyelomaTeam Member asked a question šŸ’­
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what