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Creating a Sustainable Support Network for MPN Patients

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Published on November 13, 2020

How to Create a Sustainable Support System for Your Loved One

Throughout a patient’s journey with a myeloproliferative neoplasm (MPN), their care partners need to remain strong to support them and ensure their quality of care. These individuals are often the patient’s significant other, family member or close friend. How can we as caregivers create a sustainable and supportive network for them, and for ourselves, as we navigate this uncertain terrain together?

Listen in as Esther Schorr, Patient Power co-founder, caregiver and patient advocate, is joined by Cheryl Petruk, executive director of the Canadian MPN Research Foundation, and Susan Hedlund, oncology social worker at the OHSU Knight Cancer Institute, to discuss their recommendations for building strong support networks for MPN patients.

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Transcript | Creating a Sustainable Support Network for MPN Patients

Importance of an MPN Support System

Esther Schorr: Hi there, this is Esther Schorr. I am an MPN care partner myself, and our topic today is how can we as caregivers create a sustainable and supportive network not only for our loved ones dealing with an MPN but for ourselves? And how could we create that network so that we continue to be strong and do the things we need to do for our loved ones?

Joining us today are two special guests. Caregiver and super-advocate Cheryl Petruk, who is the Executive Director of the Canadian MPN Research Foundation, and she is joining us from Toronto. Hi, Cheryl, how are you today?

Cheryl Petruk: Hi, Esther. Good to see you.

Esther Schorr: Also joining us today is Susan Hedlund, who is the Director of Patient and Family Support Services at OHSU Knight Center. And she's joining us from Oregon. Hi, Susan, how are you doing?

Susan Hedlund: Good, thank you.

What Does a Care Partner Do?

Esther Schorr: Let’s do this. Let's start with you, Cheryl. You came into the MPN community as a caregiver to your late husband Eugene, and I know that he was diagnosed with ET, essential thrombocythemia, it's a big word, and then he progressed to MF. And all through Eugene's journey, you'd said that you wanted MPN patients to get the most up-to-date information they could, and resources for navigating that journey, and of course, that includes care partners needing that same kind of information. So in all the years of your working with community-based support organizations, do you think that that made you a better care partner?

Cheryl Petruk: I always said through my husband's journey, what was I supposed to learn? And what was I supposed to do, and how could I be there for him? And in a lot of cases, patients maybe don't want to know, they don't want to know about the future, they're living and trying to just be in the now to help their own existence. And really, the care partner and the caregiver is there too, I want to say take all the other information in and help that patient be able to navigate their journey and really navigate the choices that they're going to have to make during their time with an MPN.

And some of those choices are going to be really easy and not difficult to make early on during their journey, but it's when they get to a part in that journey where sometimes the choices that they have to make are a little more difficult. And sometimes it's looking at that inevitable of mortality and looking at the inevitable. "Do I do this, or should I do a stem cell transplant, or should I do something else? What should I do? Should I go on that clinical trial, is it going to be successful?"

So really, as a care partner, they're looking to you for the strength and the energy that you can give them. It's really important for you as a care partner to be able to give them that.

Esther Schorr: It also sounds like care partners have to be equally if not more educated about the disease, because one going through a cancer journey may be focused more on just getting better and handling things emotionally, when if you have somebody else who's there and present and learning along with them, that that gives another perspective, but also a rational voice around it. Is that reasonable?

Cheryl Petruk: Absolutely. I know myself, what I did is every time my husband went and saw his MPN physician, I always had a scribbler. I was the person who wrote down the notes, who wrote down what the doctor said, wrote down his weight and height, and all the things that the doctor looked at. And I was the one who was able to write all that down and synthesize what the doctor was saying so that my husband could look at and say "Okay, this is…" because again, you're very focused as a patient on what the doctor is telling you, and when you have that second set of ears and that second set of eyes it's really a great opportunity to be a little more objective, even though you're very impassioned with your patient. You still have a bit of objectivity where you can synthesize that information in a much more objective way and take it down differently.

But yes, I also agree with you that the caregivers and care partners are probably more engaged in knowing about the disease than the patient is as well.

What is the Role of a Cancer Caregiver in Decision-Making?

Esther Schorr: Where in your journey as a care partner did advocacy come in? Were there points in your husband's and your journey where you had to actually advocate for one thing versus another?

Cheryl Petruk: Absolutely. I can tell you when I learned about the CALR mutation, I actually brought that up with his doctor at the time, because we ended up switching doctors in the middle of his journey. But I brought it up once I had learned through research and reading and all that information about "Okay, could he be CALR? What is the CALR mutation all about?" And so then the doctor took the time to explain that to us. So, it's really about asking some of those difficult questions.

It's learning and reading and understanding what the disease is and where it can progress to, may progress to. It's really about educating yourself to be able to ask those questions and advocate on behalf of your patient. And so, it's really important to establish that rapport with the doctor on behalf of your patient, because sometimes they don't know how to ask. They're focused in on that clinic visit and they're only hearing and absorbing so much. So it's that extra set of ears, that extra set of eyes to be able to ask some of those tough questions.

Esther Schorr: Yeah. And I'm just curious, along the way how often did you get asked "How are you doing as a care partner?"

Cheryl Petruk: It wasn't until the end that the general practitioner that we saw asked how I was doing, and the MPN doctor that my husband saw, she was great. We had dialogue, I would email her questions, she would respond back. So I was very open about how I was doing, and she would ask, not in the clinic visit but through our own communication, she would ask how I was doing. But really, they're focused on the patient, they're not focused on the caregiver or the care partner, and a lot of times we sit in the background going through our own issues, our own mental health issues, our own anxiety, because as we can see our partners in their disease progression, we see that they're getting worse, we know what the eventuality is. I had the ability to ask the tough questions of our MPN doctor, and I came right out and asked and said "How long do you think he has?"

And she thanked me. She said "Thank you for asking these tough questions, because it's always very difficult for us to be able to bring that up and say to patients okay, maybe if you want to do traveling or you want to do this, you should do it now. It's always very difficult." And I get that. But having that ability to sit back and breathe and ask those questions helped me, anyway, as a care partner, be able to make his journey and the last part of his journey what it needed to be and what it should be and what it ought to be.

So, when I knew it was his last Christmas, and I didn't share that with him because to me that was important that he kept on having hope and inspiration that he was going to live for several years, but just the last Christmas, I made sure it was the best Christmas ever. I made sure that his sixtieth birthday party, we had a huge birthday party with 130 people at it, lots of friends, lots of relatives, because I knew that potentially, that could be his last celebration.

Where Do You Find Caregiver Support Groups?

Esther Schorr: Wow. Well, it's a lot for one person to handle, and one of the things that I'm going to talk with you, Susan, about now is how does one deal with that, what is the support out there? I know that you've been an oncology social worker for many years, and you do psychosocial support services for people with cancer as well as care partners. How can patients support their caregivers and where can the caregivers go to get support?

Susan Hedlund: I have a team of 16 oncology social workers, including our bone marrow transplant and stem cell transplant social workers, and one of the most important things that that group works on is supporting caregivers. How do we virtually connect caregivers, these days, especially, when we're working under COVID conditions? But how do we get tools to caregivers, care partners, so that they know that they're not alone? One of the things that I heard from care partners in this time of COVID is that the virtual offering of support groups is actually quite helpful because when we would offer them in person we would often hear that they didn't feel like they could leave the patient, or they felt guilty leaving the patient, and at times would feel guilty that they had needs themselves.

And so, we try to really normalize that this is a shared journey, that both people are grieving and that there's a need for if we're going to continue to provide care in a healthy way, we need to stay healthy ourselves. And yet many caregivers don't feel like they deserve that or shouldn't. But I think it's really important to make sure you stay connected, make sure that you recognize the growing feelings of isolation, and that's been made worse, of course, in this time of COVID.

What we see in the literature and clinically is that partners in care often experience a lot of anxiety, depression, loneliness, and sometimes feelings of anger — usually it's not so much at the person who's sick, it's more about the circumstances that they find themselves in, and a lot of profound exhaustion that isn't relieved by sleep. And so as it was mentioned earlier, earlier in the disease process it may not be as exhausting or depleting, but as someone becomes more ill and the caregiving needs become greater, it's often more difficult to manage all of that.

And so, I think that it's really important to pay attention to those feelings of anxiety, depression, hopelessness, really pay attention to sleep, eating, staying connected with other people, paying attention if one is using alcohol or other substances to cope, because there are other tools that might help partners in care sustain longer term.

Esther Schorr: So Susan, we should clone you and your staff, because what you do is what's really needed. It's a necessary thing when two people or a family and a patient are going through this. Let's say my patient is getting care at a local clinic and not at a center of excellence. Where can somebody like you or staff like you, where can we find you? What do we ask for?

Susan Hedlund: I think organizations like this very organization are really important networks of support that even, as Cheryl said earlier, even if you're not in the same state or the same city if we can connect virtually with these kinds of support services, I find I'm facilitating a lot of support groups virtually these days that ironically has actually made access easier for people. I think about some of the people I work with who drive into somewhere or another to go to a support group for the person is exhausting, whereas you can go into maybe the back bedroom and plug in. And so I think being able to do that, and I actually believe that post-COVID, we are going to have more and more options that are offered virtually just like that, which will actually help us be less isolated.

I think the other thing is, if a person is getting their care in a local clinic that doesn't necessarily have robust support services, trying to connect with other local organizations that serve similar patient populations, they may be able to network the patient and the care partner into the existing services that are out there. There's a group out of New York called CancerCare, and they serve all different kinds of diseases and everything that they're offering is virtual. It's all free, they have wonderful resources online as well.

And so those are some options, but I definitely think organizations like this organization can help direct people to the resources they may need.

Esther Schorr: Thank you. And I would think that the organization that Cheryl is working within Toronto that people could call there.

Cheryl Petruk: Absolutely. We have support groups, the Canadian MPN Network has support groups across Canada and encourage caregivers and patients to contact us and go to our website, find our local people and contact the local support group in your area, in your province or your city and reach out, because that's what they're there for. They're there to help you navigate your journey, and it's really important, just if I can piggyback onto what Susan said, is that the care partner really needs to just step up and say, "You know what, I'm in need of some help, I'm not coping with this well."

It took me a long time to go to my own doctor and say, "You know what, I need some help, I need something to help me cope." Because I was just a mess for about a three-month period where I wasn't thinking clearly, I wasn't thinking straight, I was on the verge of tears all the time, and my husband didn't need that. He didn't need to see me on the verge of tears, he didn't need to see me not being able to make a decision. He was looking to me for my strength to help him.

And so, I think as caregivers and care partners, we sit back in the wings a lot of times until it's almost too late, where we are so fatigued, where we are so mentally exhausted that we need to be able to say "Hold it, you know what? It's not a failing of me, I need something to help me cope." Whether that's counseling, whether that's perhaps a medical intervention, whether that's something to help us be able to think clearly and get ourselves back to our normal state.

Esther Schorr: I can completely relate to that, because when my partner many years ago, it was now 25 years ago, was diagnosed, it was not with an MPN, it was with CLL, we had two small children. I needed to say, "I can't function, I'm upset, I'm scared." And it took counseling and it took medication, because I realized it wasn't just my husband that needed the support, but I now had two children who were too young to understand what was going on, but dad's not feeling well and mom is distracted. So, that's the other area of advocacy that I think comes in is advocating for yourself.

There's a great question from somebody in our audience, and they happen to be a patient and not a care partner, and they're asking, "What if you don't have an advocate to help out when I go to my appointments and know that I need that person there?" Do either of you have some suggestion of, are there services are there where somebody can be brought in as a volunteer to help be that advocate for a patient?

Susan Hedlund: What came to my mind when the question came up, Esther, was you may not have a partner but most people have a good friend or a family member that may be looking for ways to be helpful. I often will ask care partners if anybody's offered to help, and they'll often say "Yes, but I didn't accept it." And then I'll come back with "Well, maybe it's time to start thinking about that."

So, I think usually, even if we don't have a partner, we may have another family member or a friend who's said, "How can I help?" Or "Let me know if I can help." What's really great is if you have something specific to ask. Many of our patients come to our clinics with a friend who is the scribe, will take notes during the physician visit or that sort of thing. There are some organizations that have peer mentors that can also attend clinic visits to try to help with some of those things.

Esther Schorr: That's great. Cheryl, you have any other ideas about that? Is there any other connecting services that you're aware of?

Cheryl Petruk: I don't know of any connecting services, but reach out to our MPN support groups. People are going through it and they want to help one another navigate their journeys, and I know in the Canadian MPN Network, they're looking at setting up a buddy program where patients can help other patients, and so it's really important that that program be successful because it really is about helping one another through our journeys and giving assistance to one another throughout the journey.

And so, somebody who has an MPN who may have been just recently diagnosed can learn from and have an MPN patient who has lived with the diagnosis for several years, and have that understanding that "You know what, it's going to be okay. It's a chronic blood cancer, this is what I've gone through," and give them some reassurance. And perhaps even maybe go to their ... if they don't have a partner to go with them, maybe that other patient could go with them, because then they could help them ask the questions. Or maybe they would provide them a list of questions that they had once asked their doctors and say "Okay, this is what you need to ask your doctor," or "This is what you want to know and understand."

Are There Challenges to Finding Social Support During COVID?

Esther Schorr: Along those lines, I know that you've set up... both of you are saying that a lot of this now happening virtually, and we did have a question from somebody in Canada who is planning an MPN support group. So whoever you are, you need to be talking to Cheryl. But they're doing it on Zoom, and the question is what challenges are presented doing a Zoom meeting as opposed to a meeting in person? How do you handle that?

Cheryl Petruk: So, that's what the Canadian MPN Network is all about, is helping our patient advocacy leaders who want to establish a local support group do that. We give them, we have someone on the board of directors who is a mentor who gets them established, we have a really good, I want to say, policy and a really good set of literature to help patient groups get formed and started so it's not so overwhelming and overloaded. So definitely, we are here to help patients get those support groups going.

And I think the biggest challenge is just the technological part of getting through Zoom. Once we're on, we get to know one another, we get to talk, it's just like sitting right next to one another except it's via our computers.

Esther Schorr: Susan, do you have any thoughts, any advice for people who are trying to create their own support networks like that?

Susan Hedlund: I think very similarly to what Cheryl said, I think most of it is technology, most of it is figuring out the camera angle or figuring out how to mute and unmute and all of that. I'd be the first to say it's not the same thing as being in the same room with people that you care about, it's just not, but it's a great option for people who aren't able to gather together these days.

The one thing I would say is depending on how you're setting it up, there's a lot of different platforms, some seem more nimble than others. There's Zoom, there is BlueJeans, there's Webex, there are all these different types. I know in my institution, they're pretty strict about which platforms you use because of HIPAA, so that may or may not be something that you need to think about with regards to that.

What Advice Do You Have for Other Care Partners?

Esther Schorr: We've talked a little bit about logistic things, and as we get toward the end of our discussion, I wanted to talk about a more of an emotional thing, and that is I know that as a care partner it's pretty easy to fall into the trap of "I've got to be able to do everything, I don't want to ask other people to do things, I've got to do it all." How do we get past that culturally ingrained thing of "I'm the person, I have to do it all for my patient?" How do you get past that?

Susan Hedlund: Care partners need to speak up and accept help. I think part of it like I've worked with a woman who had cared for her husband for about seven years, and she admitted that she didn't think anybody could provide the kind of care she did, and it was really about control and really relinquishing some of that.

But what I tried to keep saying to her, "This is a marathon, not a sprint. And it's true that no one can provide the care precisely in the same way that you do. But there may be things that others can do so that you get a break, so that you can do the marathon instead of the sprint, so that you can go get your haircut, so that you can go to a counseling appointment, so that you can go to a yoga class," and just take that break because that brings you back, I believe, as a better partner in care. If you've refilled your own vessel a little bit.

Cheryl Petruk: Yeah, I can only reverberate what Susan has said. I believe that we can't refill someone else's cup if our cup is half empty, or if our glass is half empty. We really need to be able to keep our glass as full as possible, and I want to not say this in a bad way, but we have to be selfish in a little instance for ourself, because we can't help our care partner or help our patient if we're not fully there, if our glass isn't full as a care partner.

And so, I know for myself towards the end of my husband's journey, I would take an hour out of the day. I wasn't working at the time, so it was great because I was home with him all the time, but I would go to the gym for one hour a day and I would ride the bike, and that was my hour for me. And that's not selfish, but that's being really proactive, that was helping me keep my mental health and my stability in check so that I could be there and that my vessel was full so I could fill my husband's cup when he needed my energy.

I can only say that sometimes it's not even about control, it's about letting other people have an opportunity to be the care partner to your patient because it gives them time to spend with the patient, especially in the latter part of the journey. What it did is it gave my sons the opportunity to spend some quality time with their dad. It gave his sisters some quality time to spend with their brother. It helps others spend more time with that patient.

Esther Schorr: And often, those people aren't feeling comfortable to ask for that, so in a sense, you're giving them a gift because they'd say "Well, I don't want to get in the way of the time and the place," so it is a gift.

One other question I have is how can a caregiver, a care partner and a patient communicate most effectively with each other? I know that we've been talking about how can a caregiver advocate for themselves, advocate for the patient in a medical setting, but there also can be this weird dynamic of "I'm not sure what my patient wants from me and I'm not sure what I can ask of a patient." So, any comment on that dynamic, and how we can work better at that?

Susan Hedlund: That's why my job exists, I'm afraid, to help people talk to each other. And most of us don't necessarily automatically have the language to negotiate these hard conversations with one another around illness or end of life issues or the things that are frightening to us, and I think caregivers, care partners, often feel like they need to be the cheerleader to bolster their loved one's spirits, and I think to a great extent, that's really true, as you said, Cheryl, your husband didn't need your tears.

At the same time, I think being able to acknowledge that by learning how to have open and honest conversations really keeps the intimacy alive in a relationship, and it's not always easy, but try to figure out how to talk about the hard things. For example, if you don't know what your partner needs or wants from you as a care partner, try to ask. "What's the most helpful? Is there anything I'm doing that's not helpful?" And then conversely, the care partner may be learning to say, and this isn't easy either, "It would really help me if I had an hour a day to go to the gym and ride the bike, and is it okay if I ask one of our sons to come over during that time?" And really negotiate some of that.

Sometimes I find I'm in a role in my professional life of really saying to the patient, "It's hard to see your loved one go out the door for an hour, but this will be so helpful in the long run for both of you." And I'm in a position where I can do that because I'm not in the relationship. But I think learning to talk to one another in a more honest and authentic and kind way can go a long way toward preserving a relationship.

Esther Schorr: Thank you, that's very helpful. Cheryl, as we wrap this up, do you have any parting thoughts for our audience?

Cheryl Petruk: I always looked at my husband's journey as what am I supposed to learn? I'm supposed to learn about his diagnosis, but what else am I supposed to learn along this journey? And I learned a lot about myself, I learned a lot about our relationship, I learned a lot about communication and I learned a lot about life. I guess what I would give as words of wisdom to other care partners is to have the dialogue with your partner, with your patient, sit down and just have a very pragmatic common-sense conversation with them about the disease and about what the challenge is that they're facing. And sometimes those are really hard conversations to have.

But you know what? Sit down and just have them, and have that discussion, that open, frank, honest discussion. And let them know how you're feeling. And when you both know how each other's feeling, then I think you can travel the journey along together way better because I knew what he was feeling and the trepidation and the anxiety and then he knew that while I was trying to be strong and I was strong for him, he knew that deep down I had the same issues. And that's the words of wisdom that I share.

Esther Schorr: No, they're very meaningful, Cheryl, because really what you describe is how you have successful relationships with any challenge, and this is one of the most challenging of all. I really appreciate your input. Susan, parting thoughts on all of this?

Susan Hedlund: Yeah, I would just reiterate that partners in care deserve to also have some of their basic needs met and that in the long run will serve both of you well. I think the parting words would be speak up, accept help — I love what Cheryl said about it's a gift to others to be able to help, and also manage stress, anxiety, depression and know that you're not alone in some of those experiences, and there's help out there. 


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