Living with blood cancer: A broader definition of survivorship

“Survivor” is a loaded word for many people living with cancer. 

 After a cancer diagnosis, big feelings come up. Fear. Sadness. Confusion. Even determination—to see it through to the “finish line.” To get back to the passions, routines, and people you love. 

You want more moments. Morning coffee, snuggles with a pet, dinner with friends and family. You want more life—life on your terms. 

You might think of a “survivor” as someone who talks about treatment in the past tense—someone in remission. But that’s just one slice of what survivorship can look like.  And whatever ‘survivor’ means to you, we can be a resource. 

Survivorship isn’t just about tomorrow. It’s about every today.  

Every person with cancer has a unique experience. Even if two people share the same cancer type, so many other things can shape what comes after a diagnosis—from medical factors like genetics and age to their needs on a day-to-day basis.   

There are over 100 types of blood cancer. Some are treatable but incurable, like myeloma (though we’re always working on research to change that). Some need daily management, like chronic myeloid leukemia. This community is full of varied experiences. 

What this means: not everyone gets to finish treatment, or “ring the bell”—a milestone moment for many. And even if they do, relapse or complications can be a big worry. Not everyone is a “survivor” in the sense of being “done” with cancer. 

So, at Blood Cancer United, we use the National Cancer Institute’s definition: we believe survivorship starts from the moment of diagnosis and continues through a person’s life. Because once you’re diagnosed, you’re living with it—physically, emotionally or mentally. And that is survival. 

Survivorship is taking it one day at a time. Having more life moments that matter to you while you get the resources you need. So that you can be here for every today—whatever today looks like.  

Survivorship is multifaceted. So are our resources. 

Every survivor might need something different. Blood Cancer United is here to meet you wherever you are. Check out some of our resources below. 

If you want a starting point for survivorship resources: 

• Reach out to our Information Specialists, highly trained oncology social workers and nurses who can assist you through treatment, financial, and social challenges 
• Check out our Survivorship Workbooks, which can help keep crucial info on treatment, appointments, mental health, and more in one place. We have versions for adults, young adults, and kids/adolescents. 

If you're looking for accurate, up-to-date information: 

• Find educational booklets on a specific blood cancer type, as well as other topics like mental health, nutrition, side effect management, and more 
• The Nurse Navigators at our Clinical Trial Support Center can help guide you through the entire clinical trial process, from the search all the way through enrollment and participation  

If you’re a caregiver or parent of someone with blood cancer (because you need support, too!):  

• Explore our caregiver resources, including information on treatment and nutrition, financial and legal questions, and more 
• If you’re caring for a school-age child, the Trish Greene Back to School Program For Children With Cancer can help you and your child navigate their education and transition from treatment back to school 

If you’re feeling isolated or want to talk to someone who gets it:  

• Join Blood Cancer United Community, an online meeting place for patients and caregivers to share experiences and find support. There are specific forums for types of blood cancer, caregivers, and topics like treatment advances and going back to work!  
• The Patti Robinson Kaufmann First Connection® Program can match you with a peer volunteer who’s had similar experiences, based on diagnosis, age, and more. 

If you want to hear personal perspectives from survivors: 

• Check out our podcast, The Bloodline! All kinds of survivors have made appearances, as well as healthcare professionals and scientists. Filter by one of our many categories, including clinical trials, finances, mental health, and yes, survivorship. 

• We have lots of survivor stories right here on the blog! Read Steve’s story on how humor helped him cope with his diagnosis, or Abby’s blog about the legislation that helped save her life. 

Your survivorship, and what you need, may change day to day, or over months or years. That’s okay. We’ll be here for you at every step.