Episode Transcript
Matt Holsen (announcer):
This is the Health and Wellness Podcast by Sanford Health. The conversation today is around supporting friends or family members through a cancer diagnosis. Our guests are Andrea Paradis, a behavioral health counselor, and Cynthia Hanson, a social worker with Sanford Roger Maris Cancer Center, Fargo, North Dakota. Our host is Simon Floss with Sanford Health News.
Simon Floss (host):
Thank you both for joining me today. Thanks
Cynthia Hanson, LSW:
Thanks for having us.
Simon Floss:
How can you offer specific meaningful help to someone who has recently been diagnosed with cancer? And we can kind of play pinball and either of you can answer the question. This is a canvas that we get to paint ourselves, my friends, so whoever wants to take that first one.
Cynthia Hanson, LSW:
Specific, meaningful help. Be specific when you’re asking someone if they’ve just been diagnosed, if you’re asking if you can help, be specific as far as like asking them if there’s help that they need and following through on the things that they might mention.
Andrea Paradis, LMSW, LGSW:
It takes a lot of mental energy when you’re asked, how can I help you? It takes a lot of mental energy to figure out those things because number one, we’re not used to asking for help. And number two, getting a cancer diagnosis can be so overwhelming that you just don’t even know what kind of help you might ask for. So to take that mental load off of that person’s plate when you’re wondering how you can support them is to offer, be specific and follow through.
Simon Floss:
What does support look like during the early days of a diagnosis?
Cynthia Hanson, LSW:
I love to see people, family specifically, but if family is not available, having help in the actual consult rooms. When people come to the center, they know that they’ve got a diagnosis, they’re very scared. Having somebody else with them is helpful. Taking notes, whatever, being that second set of ears because you get a lot of big words and you need a lot of people. That would be my biggest recommendation for people.
Andrea Paradis, LMSW, LGSW:
You can also just be a listening ear. You can provide distractions, especially during wait times. You know, once someone has a scan and they’re waiting for results or they’ve been told they have cancer but they don’t know their treatment plan yet, that wait time can be really challenging. So saying, ‘Hey, let’s go to dinner,’ or ‘Let’s do this distraction that we love to do together,’ that can be a really helpful thing. And just being a listening ear goes a really long way.
Being willing to listen to their worries and their concerns, listen to their story if they want to share it. And another thing to keep in mind throughout the entire treatment process for your friend or family member, and even after as well, in particular at the beginning of treatment or diagnosis, is to avoid giving unsolicited advice. Especially at the beginning, like Cindy said, the person who has that diagnosis is getting so much information and really learning a new language and getting other advice from other people of, ‘Have you tried this?’ or ‘Have you heard of that?’ it can add to the overwhelm. And so avoid giving unsolicited advice, or if you know the person well enough, ask if they’re open to that. And if they say, ‘No, I don’t want that,” honor that answer and honor that boundary that they set up.
Simon Floss:
Honoring boundaries. We love it. How can you support a loved one who is struggling with fear, denial or anger after a diagnosis?
Andrea Paradis, LMSW, LGSW:
The number one thing to consider when talking to people about whatever emotion they’re experiencing after a diagnosis is to not try to convince them they should feel a different way. Not trying to convince them that they should look on the bright side or be grateful or feel positive. We are not learned how to sit with uncomfortable emotions just as a culture of people. And so usually when we’re trying to help people feel better, it’s because we are uncomfortable sitting with them in their sadness or their anger or their fear. And so, we don’t want to feel uncomfortable anymore. So, we try to convince them, ‘Oh no, everything’s okay. Feel fine.’ And that’s just really unhelpful. It’s really invalidating to do something like that. So being an active listener, asking questions and just validating that, yeah, this is a really hard thing. It’s one of the best ways to support people when they’re having those uncomfortable emotions.
Cynthia Hanson, LSW:
We’ve been taught not to want help. You know, that’s something we see a lot is ‘I’ve been independent my whole life and my kids are busy with work,’ and remembering, even if say an adult parent is diagnosed, ‘Mom is a great caregiver, she’ll be there.’ Remember that mom also needs support. The caregiver also needs support. So just being there is so important and so valued by patients before they even realize it.
Simon Floss:
We all are in the Midwest. You two are joining me from Fargo, North Dakota. And I think there is a culture in the Midwest of, you know, you don’t ask for help. You kind of maybe suffer in silence or be like, ‘Oh no, I’ll get it all figured out myself,’ and metaphorically pick yourself up by the bootstraps if that’s an appropriate expression. And that can be quite unhelpful to people when you’re in really tough situations. Is there anything else that you would add to that?
Andrea Paradis, LMSW, LGSW:
Yes, we see that a lot. We’re working with a lot of rural folks, a lot of farmers, and in general just a lot of people who are used to being independent like Cindy said. And we are a culture of individualism. And so asking people to be curious about what it would be like to ask for support, that’s really uncomfortable for a lot of the patients we work with. Would you agree?
Cynthia Hanson, LSW:
I would have to say that I could safely assume that that’s going to be a conversation we have with almost every single patient. Because even people who have that support system, still they really struggle to ask for the actual support that they need.
Andrea Paradis, LMSW, LGSW:
And because of that individualism in our culture, our Midwest culture, the story is that you are a failure if you ask for help. And even people would say, ‘No, I don’t think that,’ but if they actually sit with it, yes, deep down that is the story that ‘I failed if I’ve asked for help.’ So in therapy which I’m doing with people—mental health therapy—we’re doing a lot of unpacking about that story. Where did you learn that? Is it helpful to you ultimately? What would it be if you had a different story, that help? What didn’t mean you were a failure, it meant that you were simply asking for help just like you would help someone else if they needed help. So yeah, we have a lot of conversations like that.
Cynthia Hanson, LSW:
And then too as a center, we have people like myself that are available to help find resources for people should they need something more formal support. That’s one that people struggle to accept as well, even though it’s not family. They’re afraid to want to use individual organizations, which the American Cancer Society is one that helps us out a lot. And WIC too is one of our big ones that we connect with. You can reach out to the center and you’ll connect with someone like myself that knows what those resources are.
Simon Floss:
And could you maybe talk a little bit about, you know, if you don’t voice the need for help ,help’s not going to come.
Andrea Paradis, LMSW, LGSW:
That’s right. Well, and we also see that people do offer help but that person says no. And so it is a little bit of a behavior change and a curiosity about how an individual sees receiving help and giving help and what those stories are.
Simon Floss:
What are practical ways to show support?
Cynthia Hanson, LSW:
You could do things as simple as offering to walk the dog once a week or every day. Sitting with a friend or family during infusion. Some of our infusions can get to be six hours to eight hours long. Being an occasional driver, being transportation for appointments. Some people will have appointments every day, five, six weeks. That gets to be a lot for just one other person.
Andrea Paradis, LMSW, LGSW:
Yeah, I’ve heard of people providing help by taking care of—the person who’s diagnosed—taking care of their kids. So entertaining their kids, having kids over for sleepovers. You know, some of our patients will drive to like Mayo for some treatments, or even having to come here from a couple hours away for treatments and have to stay overnight. So can your kids come have a sleepover with our kids? That childcare can be very helpful as well. Bringing meals or you know, it’s always good to ask first, what are your dietary restrictions before you bring over meals. Because we certainly hear from people, ‘All these people are bringing meals and I can’t eat it because I’m lactose intolerant,’ or gluten-free or you know, whatever those allergies and sensitivities might be. Or if you don’t know, giving an Uber Eats card if you have Uber Eats in your town. So things like that are very practical ways of helping out.
Simon Floss:
That honestly, in a way, bleeds into the next question. You know, everybody wants to help out and everybody wants to be courteous and helpful, but maybe they don’t know. I mean, you were talking about the diet. People might not know that someone’s gluten-free or lactose intolerant, but they still want to help. So what are things you should avoid saying to the patient even if it’s well intentioned?
Andrea Paradis, LMSW, LGSW:
When it comes to things like dietary things, it’s always good to ask. But in general, and this is in general because some things we might share here is what we’re sharing from what we hear from majority of patients that are unhelpful to hear. Where someone might hear this and say, ‘Oh yeah, no, that is helpful to me.’ So I just want to put that out there. This is a general kind of list of things to avoid. The number one thing is to avoid telling people to just stay positive. We hear that so often, patients will say something like, ‘If one more person tells me to just stay positive, I’m going to lose it.’ Because It’s really invalidating that the person might be going through a really hard thing, kind of like what we talked about before. Avoiding things like saying, ‘Oh you’re so strong. Oh, you’re so brave.’ A lot of times it’s harmful—or unhelpful, I should say—because the person then says, ‘Well what am I supposed to do? What if I wasn’t strong? Would I be doing this different?’ It’s just, it doesn’t really make sense to the situation.
I get it. These things are trying to be helpful and it’s just not. Avoiding things like ‘Everything happens for a reason.’ For some people that’s helpful. A lot of people not so helpful. Or saying things about a person’s appearance, like treatments have changed so much where somebody might be going through chemotherapy immunotherapy and not lose their hair, right? And so saying something to them like, ‘You don’t look like you have cancer,’ or ‘You look so good.’ On the inside, they might be feeling horribly, physically, mentally, emotionally. And so, avoiding that is helpful.
If someone finishes treatment saying to them, ‘Well things must be back to normal now.’ It typically is not back to normal right away after treatment or even a couple weeks or months after treatment. So avoiding assuming that things are quote unquote “normal” again.
And then my final suggestion is, if somebody has stage four cancer or metastatic cancer, avoiding things like, ‘Oh, just keep fighting,’ or ‘Don’t give up,’ because it’s this idea that if they decide to stop treatment or whatnot that they’ve given up, where that’s not the case. They’ve just decided to stop treatments because it’s no longer helpful. What am I missing? Any?
Cynthia Hanson, LSW:
I do kind of hear a little bit of give and take about the whole ‘Fighting cancer’ culture piece of it. So it’s, I think it’s always best just to kind of feel that out before you start talking about the cancer fight, because some people aren’t fighting necessarily and they’re just living their life. Not that they’re not fighting, but there is like a culture out there too that, they don’t want to hear about fighting cancer at all.
Andrea Paradis, LMSW, LGSW:
That’s a great example of that. There’s a group of people who like being considered a cancer warrior and fighting the war against cancer, and that’s perfectly fine if it works with that. So I love that suggestion of listen to what the person is saying about it, what kind of language they are using, and then kind of follow their lead.
Simon Floss:
On the flip side of this, what are helpful and supportive things to say to someone?
Andrea Paradis, LMSW, LGSW:
There’s so many of them. Things like, again, validation and reflection is kind of the way to go with it. So, ‘This is really hard. I can tell you’re going through something challenging. Thank you for telling me about this. Anyone would struggle with what you’re going through. I’m here to listen. I’ll walk beside you no matter what you decide.’ And asking, you know, open-ended questions like ‘What has this week been like for you since you found out about your diagnosis’ or ‘What’s on your mind today?’ And maybe even asking, ‘Do you want to talk about it today? Or should we not talk about cancer today?’
Cynthia Hanson, LSW:
Just being positive, reflective, listening to what they say and going from there.
Simon Floss:
How can you recognize potential mental health concerns like anxiety or depression for example, in someone with cancer?
Andrea Paradis, LMSW, LGSW:
I think it’s important to normalize that anyone would have symptoms of anxiety or depression after getting a cancer diagnosis and needing to go through treatment. That’s such a normal thing and it doesn’t mean that there’s something wrong with them if they’re experiencing an emotional change because of this big life change that they never would have chosen for themselves. So I think that’s important to mention. There are no wrong emotional reactions. And this is kind of a difficult question because sometimes symptoms of anxiety or depression, they might seem like anxiety or depression, but they’re actually from the treatment itself. And so it can kind of get in the weeds. But you know, of course, having them see a trained mental health professional is always a good go-to for, ‘is this anxiety and depression or is it treatment related?’ It’s a good sign if you’re not sure to go talk to a professional.
You know, there are those typical symptoms of anxiety and depression, like worry and not being able to control or stop worrying, or not getting out of bed, being irritable, crying a lot, feeling hopeless, isolating oneself, having trouble with sleep. And again, these are all valid emotional reactions or behaviors that come after something difficult like a cancer diagnosis. But those are some general things to watch out for. And I guess one thing to keep in mind is, are these symptoms or behaviors keeping someone from living a meaningful life or doing their daily tasks? And again, is that from the treatment or emotional health? Have a conversation with a trained professional about that. But a good formula is to start with how you are feeling about what you’re seeing. Because sometimes if you come at the person about what they are doing, they get defensive right away.
So, start with how you’re feeling about what you’re seeing from them and then validate and ask questions. So the formula is kind of, ‘I feel blank when you say or do blank because blank. And then validate and ask questions. So for example, ‘I feel worried when you say things like, what’s the point? Because it sounds like you’re feeling really hopeless.’ ‘The situation is really difficult.’ There’s a validation. ‘Do they have mental health support at your clinic? Is that something you’d be open to?’ Or ‘How do you feel about that?’ And then you ask questions.
Cynthia Hanson, LSW:
And we like to ask those same questions of patients. So normalizing the conversation outside of the clinic makes it even more normal here. Cancer patients are more likely to have thoughts of suicide and that is something that we screen for very, very regularly. So normalizing those questions and just where you’re at mental health wise makes it easier for them to talk to us about it and get them the help that they might need or not need.
Simon Floss:
How can you check in and offer support without being overwhelming or intrusive?
Cynthia Hanson, LSW:
Don’t stop in at 5 or 6 o’clock at night or at like 8 or 9 in the morning. They’re going to be tired. So knowing when to stop in and check in with your friend or your family is important. And then find out too when they feel too tired to have support.
Andrea Paradis, LMSW, LGSW:
I think timing, and I also think of your relationship with the person with the diagnosis as well. If you are a family member or a spouse or a really close friend, you might be checking in more often. But if you know a person who’s gotten diagnosed with cancer at church and you’re just an acquaintance, that’s usually a good clue to just maybe not ask, because we hear a lot from people who say they just want to have normal conversations. They just want to have normal conversations and normal interactions. They don’t want interactions to always be about their cancer because they’re having to tell their story a million different times. They get the sympathy eyes from people and they just get sick of it. They are not cancer. They are experiencing cancer, right?
So, if you’re close, checking in. If you’re not close, maybe if you’re a friend saying, ‘Is it okay if I ask about this?’ or ‘How often are you okay with me checking in?’ or ‘Can I trust that you’ll bring up what’s going on with your health when you have something you want to share?’ And then checking if they have something like a CaringBridge site because some people don’t want to talk about their diagnosis and treatment at all, but they’re willing to update a CaringBridge site and they just want everybody to go there to see those updates.
Simon Floss:
And last question here before we wrap things up. How can you provide emotional support to the family members and caregivers of someone with cancer?
Andrea Paradis, LMSW, LGSW:
Caregiver support groups are getting more popular, I guess, because there’s just more and more understanding that chronic stress can hinder your health. And although a caregiver or support person isn’t going through the cancer the same way the person with the diagnosis is, they’re going through very similar stressors. They’re walking parallel paths to one another.
So, something like a caregiver support group, whether you go in-person locally or online or whatever you can find, there’s just more understanding about how important that is, because that caregiver is going through a lot of stress as well. So outside of support groups, like we said before, listening, validating, these are the things I would like to take off your plate if you would allow, because the person with the diagnosis might not be shoveling their front walk, but the caregiver is.
Simon Floss:
Well, this has been so great and thank you both so much for joining us here today.
Matt Holsen (announcer):
This episode is part of the Health and Wellness series by Sanford Health. For additional podcast series by Sanford Health, listen wherever you hear your favorite podcasts. And on news.sanfordhealth.org.
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Posted In Cancer, Cancer Treatments, Fargo, Health Information, Health Plan, Specialty Care
