Multiple myeloma survivor Sandy, says that “fighting this alone without support is a hard, rough road.”
This is true not only for survivors but for family and caregivers as well. If someone you love is dealing with cancer you may feel overwhelmed, helpless, confused or even angry. It’s hard to know what to do.
The good news is that many folks in our community living with multiple myeloma have found ways to not just survive, but thrive. We spoke to them on social media and put out a community story request to get some firsthand perspectives on what caregivers should know. Here’s what they had to say:
1. “Just listen. don’t try to be too helpful. we still can do things. That said, give us a break when it takes us more time or our mood swings.” – Anon
2. “Be their second set of ears. As a patient, I don’t remember all that I’ve been told. A caregiver is such a huge help.” – Connie
3. “Treat the loved one the same as you did before the diagnosis. No one wants to see a sad face all the time.” – Jann
4. “Offer to help with meals, housework, childcare, transportation to doctor’s appointments or anything else needed.” – Inez
5. “Be by their side with an open ear. Many of us feel unheard in the medical community.” – Christia
6. “Be there for them but also give them their space. You may not need to go to every chemo treatment. Let them see they are strong.” – Jan
7. “Be optimistic, but realistic. Changes in lifestyle will likely occur unless the patient can achieve remission fairly quickly. Be understanding and supportive.” – Anon
8. “Be there to support them. Sometimes they need you to hold them and tell them it’s going to be ok.” – Bob
9. “Just be supportive, go with them to the office visits, learn about multiple myeloma and don’t bring it up constantly.”
10. “Help when help is needed. Let them tell you when that is. Let them have as much independence as they can. Tell them daily they are loved.” – Joan
11. “Be there with genuine supportive words and deeds.” – Karen
12. “Support them with your words and actions but don’t try to be a doctor and don’t assume you know how they feel.” – George
13. “If possible, go with them to one to their support group meetings, and possibly find a care-givers support group to go to as well. Sometimes they may be held at the same time to make it easier for families to be more involved. The support group could make it easier to talk comfortably about issues that they may have and they do not want the patient to know that they are more worried than they are letting on.” – Christine
My mother was diagnosed with Multiple Myeloma as well as my sister and one uncle. I think diet is a key factor in surviving. My sister had a stem cell transplant at an early age.