whole patient support Archives

Receive Personalized Support Through PEN’s New Text-Line

January 22, 2021/in PEN Blog /by Carly Flumer

Now, you can receive personalized support from our Network Managers by texting EMPOWER to +1-833-213-6657. Each of our Network Managers is a compassionate volunteer who can offer you their first-hand experience with specific cancer types. Whether you’re a cancer patient, or caring for someone who is, PEN’s Network Managers will be here for you at every step of your journey.

To introduce how you can benefit from the PEN Text-Line, we’ve shared the following FAQs, but please let us know if you have feedback or further questions.

What number do I text?

+1-833-213-6657

Who will receive and respond to my text messages?

Your text will be received by PEN’s Network Manager Coordinator, who will then connect you to the Network Manager best-suited to support your needs. Additional Network Managers may also respond, as we know it can be helpful to receive more than one perspective.

Your initial message to the PEN Text-Line will receive an auto-response, but please know that it will soon be read and personally responded to by a member of the PEN team!

What types of support can I receive from the Network Managers?

Through their personal experiences with cancer, PEN’s Network Managers are here to offer you community and connection. You can ask us anything! For example:

Cancer-focused guidance
Online and in-person support groups for patients or care partners
Financing options for cancer treatment
Identifying clinical trials
Recommended webinars
What questions to ask your healthcare team
Methods for managing stress, and for living in the moment
How to share the news of your diagnosis with loved ones and colleagues

We also encourage you to reach out even if you don’t have a specific question; you are not in this alone—there will always be someone from the Patient Empowerment Network team here to listen and offer encouragement.

Are there other reasons to engage with PEN’s Text-Line?

Definitely!

Send us your suggestions for our online content and services. For example:

What topics would you like us to cover more, or less often?
Do you have suggestions for PEN’s future Empowered #PatientChats?
Would you like to contribute articles to the PEN blog
Do you want to inspire others by sharing the story of your own path to patient empowerment?

Be the first to receive the latest PEN news by texting the word EMPOWER to the Text-Line. You will then be prompted to choose what notifications you would like to subscribe to. For example:

Upcoming PEN webinars and other events
New content releases from the Network Managers
Wellness boosts, such as notes of encouragement and health tips

Is my interaction with the PEN Network Managers Text-Line HIPAA compliant?

Your messages will always be kept in strict confidence, however the PEN Text-Line is not HIPAA compliant. Therefore, we encourage you to use discretion when discussing specific information such as your or other individuals’ names, diagnosis details, etc. Please note that any advice provided by the PEN Network Managers is not medical advice. We also recommend patients refrain from giving other patients medical advice.

Who can I contact for more information or to provide feedback?

Feel free to email Nykema Mpama at kema@powerfulpatients.org.

Message and data rates may apply

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

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.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience

Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.

Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.

What is Resilience?

What is Resilience? from Patient Empowerment Network on Vimeo.

Anchoring the Mind

Anchoring the Mind from Patient Empowerment Network on Vimeo.

Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.

Awareness of Breath

Awareness of Breath from Patient Empowerment Network on Vimeo.

Awareness of Body

Awareness of Body from Patient Empowerment Network on Vimeo.

A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.

Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.

Complete Guide To Mindfulness

November 20, 2019/in Adrenal Cancer, Adrenal Cancer Blog WPS, Adrenal Cancer Whole Patient Support, AML Blog WPS, Appendix Cancer, Appendix Cancer Blog WPS, Appendix Cancer Whole Patient Support, BC Blog WPS, Bone Cancer, Bone Cancer Blog WPS, Bone Cancer Whole Patient Support, Brain Cancer, Brain Cancer Blog WPS, Brain Cancer Whole Patient Support, Care Partner Resources Blog, CLL Blog WPS, Eye Cancer, Eye Cancer Blog WPS, Eye Cancer Whole Patient Support, FL Blog WPS, Follicular Lymphoma, General Blog WPS, LC Blog WPS, MM Blog WPS, MPN Blog WPS, NHL Blog WPS, PC Blog WPS, PEN Blog, SC Blog WPS, Waldenstrom, Waldenstrom Blog WPS /by Suja Johnkutty

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better […]

5 Holistic Methods Used to Process Grief

August 5, 2019/in PEN Blog /by Krista Harper

The thought of losing someone you love is almost unbearable, but for millions of people each year they must grieve for someone close to them. Grief is an emotion we all face at one time or another in our lives and is completely natural. However, being natural does not make it easy. While we may never truly get over the loss of a loved one [1], there are steps to be taken that can help you process grief and make life a little easier.

Yoga

Grief is an emotional stress that we store within the body and overtime those emotions can help bring us down. Yoga [2] is one way to help loosen that tightness without having it all unravel at once. Yoga allows your mind to soothe yourself by providing mental self-care and at the same time physical activity which is also important for releasing pent up stress or anxiety.

Essential Oils

Essential oils are chemicals that can either be rubbed on the skin or inhaled. Inhaling essential oils helps to stimulate areas of the limbic system that regulate emotion, behavior, long-term memory, breathing, heart rate, and blood pressure.

Each oil, such as rose or sandalwood, provides specific or healing responses depending on the emotion you are trying to inhibit or soothe. For example, rose [3] is commonly used to ease anxiety, depression, headaches, and menstrual cramps.

Getting Enough Sleep

Sleep can be difficult when you are going through a grief cycle [4]. This is because your mind is filled with thoughts about the loss of your loved one. In addition, when you do fall asleep you are likely to be plagued with sleep disruptions such as nightmares. While getting a quality night of sleep can be difficult there are a few things that can be done to help ease yourself into bed. For starters it is important to create an environment to induce sleep. Use dark or calming colors or black out curtains. Essential oils, a white noise machine, and mood music can all help. If all else fails, cuddling up to a loved one like your spouse or pet [5] are shown to fulfill the need for security and comfort.

Exercise

A lack of motivation is one of the most difficult things to overcome when you suffer from grief. Grief can easily swallow you up and keep you hidden from the outside world. This is one of the reasons why exercise is so important for grief sufferers. Endorphins [6] released during exercise reduce our perception of pain – both mental and physical. This helps to create an improved mood and the physical exertion of your body contributes to better sleep, and an overall feeling of accomplishment.

Massage Therapy

Massage therapy [7] utilizes a variety of tools and mechanisms such as oils, music, and level of touch that can help a person experiencing grief. Massage therapy has a long history of improving physical conditions and emotional conditions such as grief. Massage therapy helps to soften the body’s muscle tissues that become when experiencing grief while improving blood circulation an overall state of calm.

Resource Links

[1] Grief Isn’t Something to Get Over

[2] Grief Yoga

[3] Health Benefits of Rose Essential Oil

[4] Sleep and Grief: Tips and Tricks to Get the Rest You Need

[5] Here’s Why Sleeping With Your Dog Is Actually Good For You

[6] Endorphins: Natural Pain and Stress Fighters

[7] Massage Therapy: What You Need To Know

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