The Most Searched Multiple Myeloma Questions, Answered by a Patient and Care Partner

Sally:    

This is truth or dare? Hi, I'm Sally.

Malcolm:    

And I'm Malcolm and I've been living with myeloma for 17 years.

Sally:    

We're support group leaders.

Malcolm:    

And research advocates. And today we are answering the top searched questions about living with myeloma.

Sally:    

And caring for someone with myeloma.

Malcolm:    

And here is the first question.

Sally:    

The second one. How to ask better questions at an appointment.

Malcolm:    

Write down what you want to ask before you get there and talk to each other about the questions before you get there.

Sally:    

Sometimes questions that are really important to Malcolm don't include questions that are really important to me. And writing down the questions is not just helpful for the doctors, but really helpful for both of us in knowing what we're concerned about.

Malcolm:    

Let's go back to the first question. There it is.

Sally:    

Is caregiver burnout normal? It's normal because we forget to take care of ourselves. We forget we have to put oxygen masks on ourselves first before we can help anyone. For a caregiver to not periodically have burnout is abnormal. One thing that definitely helps me with burnout is remembering that I have to have my own social life sometimes, which means getting together, especially with girlfriends and that that's not taking away from Malcolm, that that's really enhancing my ability to give to him. How to know if a clinical trial is right for us. Go to myeloma.org and look under SparkCures, which is your best resource for finding clinical trials near you that will address the specific questions and concerns you and your doctor have.

Malcolm:    

I got the send.

Sally:    

How to know if the information is trustworthy.

Malcolm:    

Ask Myelo. Well, you'd have to be checking with myeloma.org and with your doctor and with other patients. And if you question whether the information is trustworthy, don't stop there. Keep asking questions.

Sally:    

I'd say it's like with anything else, you've got to proof check it. You got to proof check it and don't just take one person or one website's word for it. How normal is it for care partners to feel guilty? It does not take very much to make a care partner feel guilty. First, because the whole nature of caregiving is that you're giving, not taking. So being a partner means it's reciprocal. And I think that that's like a whole change in attitude and change in perspective that can help you not feel guilty. And sometimes we just as caregivers do put ourselves first. And sometimes it's just because. And sometimes it's because we really, really need to do that for ourselves. And I think guilt is just an intrinsic part of it.

Malcolm:    

And my reminder is you are a care partner, not a caregiver. And I think it's important to remember the word partner and not the word giver. And a giver implies either one way or one person doing giving. And this relationship is not about giving, but about partnering.

Sally:    

How does cancer change your relationship? What a great question.

Malcolm:    

Well, it adds a whole new component. I think it's very hard to separate the original thought that cancer means dying, which somewhere stays in the back of your mind.

Sally:    

As a twosome, whether you're spouses or siblings or friends, this issue of what used to be really a life-threatening illness, it changes a number of things in your relationship. It changes some of the balance because especially initially, a lot of the balance has to go toward the patient. And that's where some of the guilt and selfishness about care partnering comes in. It helps you identify new strengths in a relationship. When you realize that you can handle this, you're going to make it through not just individually, but you're going to make it through as a twosome. I mean, I think the basic nature of our relationship is the same. I think things that drew us to each other initially. I mean, Malcolm actually came into my life partly, I'm going to say as a caregiver because he was so responsive to my daughter's needs that it was stunning.

I mean, she was in a wheelchair. Malcolm was out there in the parking lot helping her get into the synagogue. I mean, I was overwhelmed by that. Some of the best times that we have together are when we just leave the house, leave the responsibilities of the house, even leave the cat, go away for a few days. And I mean, it's always been wonderful and it continues to be wonderful. Oh, how involved should a care partner be?

Malcolm:   

I think Sally is an example of an involved care partner. And I always feel sorry for someone who doesn't have an involved care partner. And I know there are people who go through this largely alone. And that's also why we encourage people to be part of a group. Join a support group because you need to be with people who can talk to you about this illness and living with it.

Sally:    

The involvement changes over time. I think initially I went to every appointment. I had a notebook that was crammed full of stuff. Nurses were like, "Wow, everyone should have that. " Now I go to appointments that are likely to involve some kind of transition, transition in care or something new that's come up. I have a couple of friends. I mean, this is the other piece of it. A couple of friends whose partners have chosen doctors my friends are not real happy about and sort of figuring that one out. I mean, who does the doctor belong to? What's the role of that relationship? And it's a balancing act. And I think it's part of a relationship. I mean, that you can't just assume this is how involved I'm going to be. You have to be prepared to say, "I need to be more involved or I need to be less involved." As Malcolm needs to say the same to me, "I want you involved or I don't want you involved."

Malcolm:    

That's it.

Sally:   

Those were some great questions and just like the ones that we get in our support group.

Malcolm:    

So find a support group and join one. Go to support.myeloma.org.

Sally:    

Don't forget to subscribe.

Malcolm:    

And get support.