Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Dealing with Hair Loss

This video was originally published by Macmillian.org here.

We have ideas and information about wigs, hats, scalp care and more to help you deal with hair loss.

In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.

Wigs

Wigs may help you cope with hair loss. There are many different styles and colors available.

Pain Control Support For People with Cancer

This video was originally published by National Cancer Institute on February 14, 2018, here.

 

Cancer patients and members of their health care team discuss the issues and steps for keeping cancer pain under control. You will learn how to manage cancer pain, how to talk with the healthcare team, the different medicines and methods available, and other ways to get comfortable, taking attention away from pain. The video was produced as a supplement to the NCI booklet, Pain Control, http://www.cancer.gov/cancertopics/co… To learn more about the physical effects of cancer, please visit: http://www.cancer.gov/cancertopics/co… To view NCI’s Pain PDQ, please visit: http://www.cancer.gov/cancertopics/pd…

Healthy Eating, Active Living Videos

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

Coping With Anxiety and Depression

An expert panel discusses different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

Healing vs. Curing

Healing vs. Curing from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.

Social Media in Hematology

Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.

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Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

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