A Family Affair: How a Strong Support System Can Benefit Everyone Involved

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Topics include: Living Well and Patient Stories

Besides having a good medical team, developing a strong support system on your journey with cancer is vital to help maintain both emotional and physical health. How can care partners have a meaningful impact on cancer patients? What can families do for their loved ones in their time of need? Watch now to hear from Derek and Jessica as they discuss ways to become engaged and provide support, and how family and friends can be a valuable asset to the healthcare team.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Esther Schorr:

Hi there.  This is Esther Schorr with Patient Power, and I'm here in Aurora, Colorado, at the UC Anschutz Medical Campus.  And we've just been with MPN patients and care partners at a town meeting.  And I was fortunate enough to get to meet Jessica and Derek, who have attended our MPN town meeting, but they've come without Jessica's mom who is actually the MPN patient. 

So I just wanted from a care partner's standpoint to talk to the two of you about your mom and about why you're here, and just talk a little bit about being a care partner.  So maybe the best thing would be, Jessica, could you just talk a little bit about your mom's current situation and how she got there? 

Jessica:

Yeah.  So my mom was diagnosed with myelofibrosis in 2001.  She hasn't had a lot of symptoms.  She's been going to her regular oncologist that is not an MPN specialist, and just recently we've seen more of the symptoms.  There's been more information that's come out about MPNs that's given us more knowledge to reach out to people that really can give us solid advice. 

And over the last two years, she has had more symptoms.  We've found doctors that are an MPN specialist here in Denver, and as care partners we've tried to just gain more knowledge, because it's overwhelming. 

Esther Schorr:

So talk to me a little bit, maybe, Derek, you can share.  What have you found has been the most difficult part of supporting Jessica's mom? 

Derek:

Yeah, it's a great point.  I think what I've learned is that as much as Jessica's mom needs support from her, Jessica needs support from someone else, being an only child.  So I think as I can provide help for Jessica that will help her with her mom.  And my limited background and knowledge of MPNs, I think what I'm trying to do is just figure out what support Jessica needs, so she can help her mom. 

Esther Schorr:

So what do you need as a care partner, Jessica? 

Jessica:

Yeah, as a patient, I think my mom is trying to find all the information through different resources.  And I come from a health background, so I want solid information that has research behind it. And so that's what I've been trying to find is doctors that can give you good advice and forums like this where you can meet incredible people that have walked the same journey and can tell you what they've been through, and you know you're not the only one.  Or find our care partners that say, you know, I struggled for a week or two and then I found this.  And, you know, it's so many highs and lows and just knowing that there are people out there that can support you, and there is information out there, even though it's overwhelming at times. 

Esther Schorr:

So you shared for me that your mom was diagnosed a number of years ago and that fairly recently she's moved over to getting treatment here.  So can you talk a little bit about how that change happened from a community oncologist to a specialist? 

Jessica:

Yeah, so like I said, for many years she knew she had myelofibrosis and was at a community oncologist that didn't know anything about MPNs.  And, you know, it's not the oncologists'  fault that they don't know everything about a very specific disease process, and so as a patient and as caregivers it's our job to try to find the right people to go to, to find those communities that have the resource for us. 

And most recently she's been having more symptoms, so I think that's pushed us to really find the resources and to get help, because even now as she does have tons of symptoms, you know, it takes time to figure out the right thing to do.  And it takes courage to go and talk to the doctors and to tell them the symptoms that you're really having and to learn about the medications. 

And, you know, it's just—you know, it might take a year just to get the courage to go to the doctor, and you finally get that step, but then it's like should I be on medication?  Is this how I'm going to have to live the rest of my life with all these symptoms?  Or do I find these resources and find ways so that these symptoms aren't completely affecting my quality of life and that we can live life and do things that we want to do? And even though it's scary not be—live our life instead of being scared about what tomorrow brings. 

Esther Schorr:

So what's your next step as care partners?  So you've been to our town meeting, and I know you do a lot of reading and looking on the internet with your mom.  What's the next thing that you feel like you're going to work with your mom on doing? 

Jessica:

Encouraging her to see her doctor again, and we're really lucky to have a great doctor here in Denver that we were able to connect to, and I know that the providers really want to help us.  And I know that forums like this also do, and so I think we'll keep reaching out and learning information from forums like this and then really keep developing the relationship with her doctor, because he can really guide us through this journey. 

Derek:

Yeah, and to that point, I think where there are challenges as Jessica's mom has been with an oncologist for a number of years who knows the study, whereas the thought of going to someone new even though they're a specialist is scary.  And so how do we support her that this is the person she needs to be seeing but also understanding what her needs are and how she feels?

Esther Schorr:

Thank you very much, Derek and Jessica, for sharing your insights as wonderful care partners.  Your mom is very lucky to have you both. 

This is Esther Schorr with Patient Power.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on May 30, 2018