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Advocacy Through Various Mediums with an MPN Patient and Caregiver

Advocacy Through Various Mediums with an MPN Patient and Caregiver from Patient Empowerment Network on Vimeo.

What is patient advocacy and how can you advocate? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate. In addition to volunteering with PEN, Jeff actively participates in a support group. Summer who is living with MPN has decided to advocate through her humor. Make sure to watch to see a snippet of her stand-up routine! 

“Our challenge to you is, as a patient find a way to give your knowledge of how you’re handling your disease to others and you too can become a strong patient advocate.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

MPN Patient and Caregiver Explain How Colors Impact Their Lives

MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo.

Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey.

Jeff challenges you to surround yourself with colors that put your mind and body at ease.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Essential First Aid Tips For Cancer Caregivers

First aid is an essential skill — however, 70% of Americans feel unprepared for a cardiac emergency because they either don’t know how to administer CPR or their training has significantly lapsed. It’s important for caregivers of cancer patients to be trained in first aid, so they’re fully-prepared and ready to act in emergency situations. This includes knowing how to administer CPR, looking out for the common signs of infection, and helping patients manage the emotional symptoms of cancer.

Administering CPR

Chemotherapy damages healthy cells in the body, including cells in and near the heart. As a result, cardiac toxicity and conditions like arrhythmias (abnormal heart rhythms), congestive heart failure, cardiomyopathy (the heart struggling to send blood around the body), angina (chest pain), and myocarditis (inflammation of the muscular layer of the heart wall) can occur. In these situations, a cancer patient may need CPR, which, if unsuccessful, may need to be followed up with an AED (automated external defibrillator). An AED can help restart the patient’s heart and re-establish the natural rhythm of the heartbeat. First aid training is essential for anyone caring for cancer patients as it covers how to administer CPR correctly. Caregivers should also inform themselves of the patient’s resuscitation wishes in advance.

Preventing infection

Cancer and cancer treatment weakens the immune system, which in turn increases a patient’s risk of infection. Additionally, cancer patients can have a low white blood cell count (neutropenia), which further weakens the body’s ability to fight infection. Symptoms of infection to look out for in cancer patients can include: fever, sore throat, shortness of breath, belly pain, and chills potentially followed by sweating. In this case, caregivers should check the patient’s temperature with a thermometer, keep the patient hydrated, and help them take their medication on schedule. If the patient has a high or low temperature, can’t take fluids, or simply doesn’t seem “right,” take them to the emergency room and let the staff know they’re in treatment for cancer.

Emotional first aid

One third of all cancer patients experience high levels of mental or emotional distress that meets the strict diagnostic criteria for mental disorders, including depression or anxiety. As such, emotional first aid becomes an important part of caring for cancer patients and their emotional health. In particular, anxiety can result in shortness of breath, hyperventilation, and chest pain. It’s therefore essential to learn deep breathing techniques to help affected patients stay as calm and pain-free as possible. Alternatively, depression can manifest symptoms like low mood, irritability, insomnia, excess sleepiness, and suicidal thoughts. Be sure to familiarize yourself with the signs and symptoms of depression and begin an open dialogue with the affected individual to provide them with support and treatment if necessary.

First aid knowledge and skills are an essential part of caring for people with cancer. It’s important caregivers have the right first aid training, knowledge, and skills to help patients in emergency situations.

The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly 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 […]

Braving the Caregiver Storm

As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.


The Nitty Gritty on Care Partnering

For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.

Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.

Here we go.

  • Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
  • Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
  • Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
  • Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
  • Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
  • Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
  • On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
  • Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.

Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.

How to Be a Good Care Partner 101

How to Be a Good Care Partner 101 from Patient Empowerment Network on Vimeo.

 What is the most important aspect of being a good care partner? MPN Network Managers, Jeff and Summer give tips on best practices for being a phenomenal care partner. Jeff breaks down his strategy for managing Summer’s myelofibrosis, including modifying their schedules due to Summer’s fatigue.

Most important tip?
Jeff: “To be a good caregiver, you have to take care of yourself.”

Want to connect our MPN Network Managers, Jeff and Summer? Email them, question@powerfulpatients.org

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals from Patient Empowerment Network on Vimeo.

In the midst of a crisis, it’s quite difficult to set goals. With so much changing rapidly, how can we keep focus?

PEN MPN Network Managers Jeff and Summer share tips for tapping into resilience, keeping focus and setting goals. Both share their rituals for staying focused and having fun.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Care Partner’s Checklist During a Crisis


 

PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

Cancer Patient and Care Partner Tips for Keeping Busy During A Pandemic

Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.

MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.

Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.

How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org

Cancer Caregivers Need Support, Too

This podcast was originally published on Cure Today by Kristie L. Kahl, on August 1, 2019, here.

In this week’s episode of the “CURE Talks Cancer” podcast, we spoke with a caregiver about the support needed for others taking care of a loved one with cancer: They need it, too, she says.

In a letter to her younger self – through Merck’s Your Cancer Game Plan “With Love, Me” campaign – Kristi, a caregiver to who her husband who was diagnosed with stage 3 HPV-related tonsil cancer in 2013, addressed the labels associated with a cancer diagnosis and the support she hopes others receive when caring for a loved one with the disease.

“Nothing about cancer is going to be by the book – there is no book,” she says. “You can talk to other people who have experienced similar cancers, but just as every person is unique, so is their cancer. Inconsistency is going to become the only consistency.”

Managing Side Effects – Nausea and Vomiting

This video was originally published on YouTube by The American Cancer Society on July 11, 2019 here.


Perhaps the most common side effects of chemotherapy, and sometimes other treatments, are nausea and vomiting. This video provides tips for how to cope with these incredibly uncomfortable symptoms.

Learn more at: www.cancer.org/caregivers

Fear of Recurrence

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Did you know that in addition to patients, caregivers may also be concerned about the cancer returning? This is called fear of recurrence. When your loved one finishes treatment and is no longer followed closely by the cancer care team on a regular basis, you may feel anxious. You’ll learn about how to manage those fears through tips on how to better cope with those feelings.

Learn more at: www.cancer.org/caregivers

Stress Management

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Feeling overwhelmed and juggling multiple responsibilities on top of providing care to your loved one with cancer can lead to feelings of anxiety and depression. You might feel as if the weight of world is on your shoulders. Four tips for coping are provided to help lower your stress level and better cope when times get tough. Learn more at: www.cancer.org/caregivers