PEN Blog Archives

How to Create a Month’s Worth of Posts for Your Advocacy Blog

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Are you looking for a way to boost your advocacy activities online?

One of the best ways to do this is to create a blog.  Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.

If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.

Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts.  Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.

10 Ways to Create a Month’s Worth of Blog Posts

1. Share Facts and Answer Questions for Your Readers

You might like to start by asking your readers what kind of questions they have that you can answer for them.  You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.

2. Recycle Old Posts

Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post.  Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.

3. Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.

4. Share the Latest Medical Research in Your Disease Area

Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal?  Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.

5. Create a Reader’s Poll

There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.

6. Write about a Typical Day in Your Life

What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.

7. Embed Slide-Decks of Your Talks

Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.

8. Invite a Guest Blogger to Write For You

Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.

9. Create Recurring Content

Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.

10. Plan Posts around Seasons and Events

This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.

Virtual #patientchat Highlights

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Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester

Top Tweets

Sometimes You Need to Unplug

Enhancing Digital Health Literacy

Stories Are Still Important

Full Chat

 

The Government And Charitable Resources Available To Veterans Diagnosed With Cancer

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Each year, over 40,000 veterans are diagnosed with cancer in the US. Many veterans of the Iraq and Afghanistan wars were exposed to a variety of hazardous substances, from depleted uranium to chemical warfare agents. This history of toxic substance exposure has left a legacy of health complications and may explain the worrying increase in cancer rates among veterans in recent years.

Veteran’s Affairs healthcare benefits

For veterans lacking insurance, cancer can be particularly distressing, adding financial worries to the considerable health concerns of a diagnosis. Veterans diagnosed with cancer during or after their military service may be entitled to Department of Veteran’s Affairs (VA) healthcare benefits if they are discharged under any condition other than dishonorable, regardless of the time since active service. VA healthcare benefits will cover health exams as well as specialized inpatient care. Furthermore, these benefits are available regardless of what insurance a veteran has, be it Medicare, Medicaid, private or none at all.

Veteran’s Affairs disability compensation and cancer

To receive maximum disability compensation, a disabled veteran must earn a 100% VA Disability rating. However, because of the way the rating is calculated, this can be very difficult to achieve. Veterans affected by cancer may qualify for VA disability benefits, and in cases where the VA determines the illness is service-related, they may temporarily receive a disability rating of 100% for as long as the cancer is active.

Agent Orange, a herbicide deployed in Vietnam, has been linked to Hodgkin’s lymphoma and leukemia in veterans and civilians exposed to it during the Vietnam war. As a result, veterans deployed to Vietnam may qualify for VA disability benefits under presumptive conditions. Presumptive conditions are cases in which the VA presumes a disability or illness is caused by military service and for which it decides to award benefits.

Non-governmental organizations offering assistance to veterans

Beyond the VA, there are a number of charitable organizations offering assistance to veterans diagnosed with cancer and their families . The Fisher House Foundation offers a no-cost network of comfort homes located near major military and VA medical centers across America to the families of veterans receiving treatment. This is especially important in cases where veterans must travel long distances for treatment at VA or specialist medical centers, allowing their families to be with them every step of the way. For veterans looking for guidance or aid when applying for benefits, Disabled American Veterans (DAV) offers their services free of charge, helping veterans file their claims and providing vehicles for those in need of transport to medical facilities.

The decade following the Iraq and Afghanistan wars saw an unprecedented increase in the number of cancer cases among armed forces veterans. While the VA offers benefits and services to aid veterans living with this disease, in many cases it simply isn’t enough. For veterans in this situation, there exists a strong framework of charitable organizations ready and willing to pick up the slack and aid them in the fight.

Cancer, COVID, and Change

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“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….

Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Diversity in Clinical Trials Benefits Everyone

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The COVID-19 pandemic has been an unprecedented and collective experience for us all. Sadly, the pandemic has affected some more than others. This health crisis highlights both the pre-existing inequities in our healthcare system and the populations that experience such ramifications. Racial and ethnic minority groups (REMGs) will make up the majority of the population in the near future. Over the next two decades, the US population is estimated to make this major demographic shift. This is problematic because present inequities render REMGs disproportionately vulnerable and sick.

It is critical that REMGs are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone. Currently, REMGs do not have equitable access to general health care, let alone clinical trials. We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.

Clinical Trials Awareness Needs to Extend Beyond an Awareness Week

Clinical trials awareness needs to extend beyond an awareness week or event.  Diverse Health Hub had the opportunity to speak with Dr. Gary Puckrein, president of the National Minority Quality Forum, to learn more about the importance of diversity in clinical trials. In our one-on-one, we learn what’s at stake and what solutions we can act on collectively.

Dr. Puckrein shares three critical considerations. First, we must identify the barriers that prevent diverse clinical trial participation. Second, he describes the bleak outlook if we do not increase diversity in clinical trials. Lastly, we discuss the path to empowerment that creates solutions to these problems.

Historically, clinical trials have been flawed. Different types of barriers prevent diverse participation. For example, in the 1990s, women were not recruited into trials on the assumption that they would react to medications the same way men did:

“Back in the 1990’s we didn’t recruit women into clinical trials and so there was a big struggle to make sure that clinical trials were diverse by gender. Back then the assumption was if you have a bunch of men in the trial, women would react the same way that men do to the medications or the disease pathology would be the same and so, why would you need to have women in trials?”

Likewise, during that time, REMG participation rates were low, around 3-5%. Trust is an essential barrier, with a negative historical context. A poignant example of this for African Americans is the Tuskegee experiment. Dr. Puckrein explains:

“In the African-American community, there are fears that came out of the Tuskegee experiment where therapy was withheld from African-Americans who were suffering from syphilis for no particular reason and it has an awful impact on their lives and so, that’s a deep scar in the African-American community about participating in clinical trials.”

Mistrust in Clinical Trials is Systemic 

Native American and Hispanic American communities have their own stories of mistrust in clinical trials.

The preexisting inequities in our healthcare system is another barrier, and a systemic one. Statistically, most REMGs don’t have access to basic healthcare, let alone resources to participate in clinical trials. Dr. Puckrein shares staggering data, “before the Affordable Care Act about 48% of African-Americans had no health insurance, about 54% of Hispanics had no health insurance.”

Furthermore, someone may be considered ineligible for a clinical trial if they already have existing health conditions. According to Dr. Puckrein, “REMGs were disproportionately excluded from some clinical trials based on either prior cancers, comorbidities, other things that may not have clinical implications.”

Outcome Risks If Barriers Aren’t Eliminated?

Without diversity in clinical trials, we risk collecting homogenized data which does not include the larger genomic context necessary to understand and improve precision medicine for everyone. It’s important that we make clinical trials all-inclusive, as Dr. Puckrein points out:

“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”

The stakes are high because the future of our health depends on inclusivity right now. Clinical trials awareness needs to extend beyond a month of awareness. We don’t want today’s diseases to adversely affect generations to come. What then is a viable solution to this dilemma?

How Can We Learn and Take Action?

First. Get informed. Understand the larger historical context and intentions of clinical trials.

Second. Share this information by creating learning communities. Dr. Puckrein gives an example:

“If you bring physicians and patient advocacy groups, the policy makers and others around the table, you can solve problems like that and solve them quickly and inform the healthcare system so it’s interactive, it’s constantly learning. And so, we encourage people to build those – make them data driven. Use the data to help guide you on what interventions will work and how you’ll get the best possible outcome for patients.”

Third. Act. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” Program is a public health initiative designed to remove the barriers that prevent inclusive access. As Dr. Puckrein highlights,

“The “All of Us” program is really designed to address that problem, to take populations that have not historically been in clinical trials — and now we include senior populations in that list as well — and make sure that we’re gaining signs in research about those populations. And so, the “All of Us” program is really designed to fill a big scientific gap in our knowledge.”

Furthermore, it is crucial to engage early with community leaders and grassroots organizations that resonate with underrepresented patients, and to encourage their participation in the critical stages of research.

Seeking knowledge, joining a community of advocates, and taking collective action is key to making a difference for all of us as we journey the path to empowerment.

 

ASCO Goes Virtual 2020

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The American Society of Clinical Oncology (ASCO) is the preeminent professional organization for oncologists. Their annual meeting usually takes place in Chicago, IL, but this year it goes virtual! Take a look at the infographic below to learn how to attend virtually.

Attend ASCO Online

 

 

Tips for Patients on Staying Connected Despite Physical Distancing

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We are in a crazy time right now, and no one has experienced anything like it…except for cancer patients. As high-risk patients, we know what it’s like to distance ourselves from others and practice good hygiene. I know I do.

As a thyroid cancer patient, I underwent radioactive iodine treatment, where I became radioactive. I was living with my family at the time, and I had to have my own room and bathroom. No family member could come within a certain distance from me. Not even my dog. I remember them leaving meals outside my door, and texting a parent or sibling when I needed something. It was strange, yes, but I knew it was what I had to do to keep myself and my family safe.

The same thing is happening right now. We’re told to stay at least 6 feet apart from people at all times. Performing normal tasks such as going to the grocery store, a friend’s house, and even work are no longer possible. It creates a sense of grief in all of us, as we feel lost without our normalcy. Instead, we are living a “new normal,” something that cancer patients have already been long accustomed to. It’s as if the rest of the world gets to see how we live, how we feel.

We may have to physically distance ourselves, but staying connected is still possible. And it is in these moments that we can learn how to cultivate strong relationships. We live in a world with an abundance of technology. We have the ability to call, text, email, video chat, Tweet, etc. Had this pandemic happened a long time ago, none of this would’ve been possible. Social distancing would be real.

To take advantage of the opportunities that are currently presented to us, I’d like to highlight the ways in which we can stay connected:

(NEW!) Virtual Empowered #PatientChat | Friday, May 15 @ 1PM EDT

The Virtual Empowered #PatientChat is a moderated conversation conducted online via Zoom and Facebook Live. This support group will feature an expert moderator, a panel of passionate patient advocates and care partners, and other people seeking a consistent friendly community. Learn more and register!

 Support groups via Zoom

  • Our Odyssey
  • Smith Center – for AYA patients (located in the Washington, D.C. area but is open to patients all over)
  • Look for ones from specific cancer orgs (ex. Thyca, Inc.)

Facebook support groups

These can be found for cancers from the general (ex. breast cancer) to the specific (ex. breast cancer with BRCA1 mutation)

Tweet chats

Search for these using the hashtag as seen below. A few of my favorites include:

  • #patientchat
  • #ThyCaTalk
  • #bcsm
  • #HealtheVoicesChat
  • #medtwitter
  • #HCLDR

Community Check-In #patientchat Highlights

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Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?

Online communities won’t be canceled

Use social media to find patients like you

Full Chat

 

Telemedicine: What You Need to Get Started

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This post was originally published by Health Content Collective here.

Given the global pandemic, many healthcare providers are shifting gears to give patients the option to receive care virtually, without an in-person visit. The idea of telemedicine may seem a bit daunting so here’s what you need to know to help you have a smooth, effective experience.

What to Expect:

  • The Patient Portal: If you haven’t set this up in the past, now is a great time to get familiar with this technology. You can set up or manage your appointments, communicate with your doctor, view test results and access additional resources. It’s also where you’ll find the technology for virtual visits, if available from your provider. If you do not have login information, contact your provider’s office.

  • Apps: In some cases, the patient portal will have an app that serves the same purpose. For telemedicine visits, if available, this may be an easier-to-use option as it removes the nuances of compatibility with various browsers.

  • Instructions: Depending on your doctor’s office or institution, you will receive instructions for joining the virtual appointment. This may be in the form of an email message from the patient portal, a text message (if you’ve opted in), a phone call from the clinic, or all of the above.

  • Patience: As with any video chat technology, there is inevitably an issue early on either with sound, video or all of the above. Be patient with your provider and yourself as you try to connect. Conversation may not flow as easily as it does with your provider in person, but you will find a comfortable groove after the initial few minutes.

  • Consent: You will be asked to electronically sign and consent for the virtual appointment. You may receive a message from your doctor via the patient portal or you will be guided through the process as you log in for your visit.

Key Steps for Success:

  • Make sure you have access to the patient portal.

  • Login in advance to “test your system” – most technology offers this option when you are on the virtual appointment screen.

  • Download and login to the app if available.

  • When scheduling, ask for a phone number to call if you have any issues when connecting.

Will This Change the Practice of Medicine?

As we begin to look beyond the pandemic, it seems that virtual medicine may become a mainstay. Certainly, if your visit doesn’t require a physical exam, this option is enormously more convenient for seeing a doctor and being able to communicate how you’re feeling.  But if you need a test or bloodwork, this becomes a less reasonable option

What are we missing by visiting a doctor in-person? And, conversely, what are we gaining by going virtual? Like every new technology, there are pros and cons. Only time will tell.

Click for Infographic

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up

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Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up from Patient Empowerment Network on Vimeo.

MPN Network Managers, Summer and Jeff sheltering in place from San Diego, California, challenge listeners to be less consumed with worry by looking at service as medicine. They share how their theater programs, mentoring others and church activities have empowered them to give more of themselves and focus on the positive.

What activities do you enjoy that help you serve others? Share it with Jeff and Summer! question@powerfulpatients.org

How A Dog Can Help With Depression

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Dogs perform many different services for people, including helping us when we’re down. It isn’t uncommon to see a therapy dog wandering down the halls of a nursing home, cheering up the patients inside.

New research has shown that dogs can help alleviate everything from depression to anxiety to aggression and other mental health problems. But how exactly does this work? And do all dogs relieve depression or is it the gift of a select few?

Will My Dog Know I’m Sad?

Dogs can sniff out cancer and even detect blood sugar levels, but do they recognize our emotions?

Many studies have found that dogs are susceptible to our emotions. For example, one study found that dogs are sensitive to changes in facial expression. While this study only used angry faces and happy faces, scientists assume that dogs will be able to recognize all if not most changes in the facial expressions of their owners. In other words, they can look at our faces and tell whether we’re happy or sad – at least most of the time.

Another study looked specifically at whether or not dogs can recognize emotions based on vocal tones. This study used a phenomenon called head-orienting to tell which side of a dog’s brain the stimuli were activating. To put things simply, dogs naturally tilt their head when processing audio stimuli based on the part of their brain they’re using to interpret the audio.

The researchers were able to tell what sort of emotion dogs were interpreting each vocalization as using this method. They found that dogs were very good at understanding human voices, even when faces or other cues weren’t visible.

There are many other studies that have looked at whether or not dogs can interpret emotions. However, they all come to the same conclusion – dogs are extremely good at reading a human’s mental state based on things like facial expression, body language, and tone of voice.

The Science Behind How Dogs Can Help Depression

Now that we know dogs can recognize our emotions and do often respond to us appropriately, in which ways is this good for treating depression?

Higher Oxytocin Production

One breakthrough study found that most if not all pet owners experienced increased oxytocin levels in their brains. This biochemical is also known as the “love” chemical, and I think anyone with a dog can recognize the unconditional love they often provide. (Unconditional oxytocin, anyone?)

They found that those with pets had less self-reported cases of anxiety and had lower stress-related markers like epinephrine and blood pressure.

Pet owners also had plenty of other benefits in the study, not all of which are directly related to mood. Dog owners had improved pain-management and less sickness, increased trust and higher relationship ratings with other family members in their life, reduced aggression behaviors, and even enhanced learning abilities.

Scientists theorize that higher oxytocin levels are the reason for many of these benefits.

As you might know, raising oxytocin levels is very beneficial for those with depression. Oxytocin plays a crucial role in regulating anxiety and stress. When it is low, these emotions can run rampant.

The simple presence of a dog can help fight depression simply because of the increased levels of oxytocin pet owners often experience.

Lower Stress

Similarly, dog owners have lower stress markers than those who don’t own dogs. A stress marker is a biological function that kicks in when we feel stressed, like our blood pressure or levels of certain hormones. Measuring these levels is an excellent way to get an objective idea of someone’s stress levels.

Many studies have shown that pet owners often have lower stress markers across the board, which means they are likely less stressed. For example, one study showed that owning a dog lowered blood pressure levels.

Companionship

Depression often feels lonely. It makes its victims withdrawal from the world, though face-to-face contact often relieves many symptoms of depression.

Dogs offer unconditional companionship to their owners and help remind them that they aren’t alone. Dogs don’t require the depressed person to leave the house or pick up the phone, which many depressed people cannot do on their worst days.

Furthermore, because dogs can recognize when their owners are depressed, many will automatically provide comfort in a time of need.

How Dogs Help With Anxiety

Dogs help with anxiety and other mental illness, similarly to how they help with depression.

They increase oxytocin production, which decreases stress and fear, and provides unconditional companionship to their owners. These things help with mental illnesses of all kinds, including anxiety and depression.

In our modern world, children might be particularly vulnerable to anxiety, even in the elementary school years. Luckily, these benefits are apparent across all ages, including children. One study did find that children who owned dogs were less likely to have anxiety or a similar disorder than those without dogs.

Dogs might be particularly useful at treating anxiety in children with Autism Spectrum Disorder.

Dogs Contribute To A Healthy Lifestyle

Having a dog also requires you to partake in activities that contribute to a healthy lifestyle and help diminish the effects of depression.

For example, every dog is going to need exercise. Even if you have a breed that doesn’t require long walks, they are going to need to be taken outside multiple times a day to use the potty.

Simply getting outside and walking around in a green area has been shown to improve physical and mental health outcomes. Going out can also increase vitamin D intake, which can also improve mental health. Vitamin D deficiency can mirror depression in many ways and mental health professions think it plays a critical role in many depression symptoms.

There is also some degree of responsibility that comes with owning a dog. You have to get up to feed them, take them outside, and get them some exercise. Even if you did the bare minimum on any given day and only took care of your dog, you would get more done that if you owned no pets. Exercise and dogs are often correlated with being more productive for these reasons.

Plus, responsibility and productivity are linked with higher self-esteem. Those who get stuff done tend to think higher of themselves. This can help undercut many of the negative thoughts that are common with depression and other mental health problems.

What Is The Best Dog For Depression?

There have been very few studies on which types of dogs are best for depression. Overall, there seems to be very little difference between highly trained service dogs and your average companion dog when it comes to treating depression symptoms. This is likely because there are very few specific actions a dog can perform to help with depression. It is mostly their presence and day-to-day maintenance that is crucial for treating depression symptoms.

However, trained service dogs can be helpful to those with PTSD, anxiety, and other mental illnesses. In these cases, dogs can perform specific commands that can help substantially. Service dogs for anxiety can often detect anxiety attacks before they start and prompt their owners to get to a safe place.

In terms of breed, no one dog breed is better for depression than others. In general, it is better to pick low-maintenance dogs, as someone with depression might not have the energy to care for an energetic Jack Russel or the highly-intelligent border collie.

As usual, you should take into account your living situation and lifestyle when choosing a dog as well. A giant dog might not be suitable if you live in a smaller home. Some people might find it very calming to brush a dog daily, but you might not.

Labrador Retrievers are a standard go-to for all service dogs and emotional support dogs. These canines are reliable and dependable without requiring vast amounts of maintenance. They do require quite a bit of exercise each day, but not as much as most big dogs.

Other dog breeds that are good for those with depression include Greyhounds, Havanese, Whippets, and Spaniels.

What Now?

Dogs can help with depression through a variety of health benefits. Their closeness increases oxytocin production and levels of serotonin, which in turn decreases levels of stress and lower blood pressure. It also increases positive emotions and can make us more trusting of others around us. Our furry best friends can also provide the emotional support we need. Just being around a dog can even lower our heart rate.

Dogs also force us to perform actions like going outside and exercise, which can help improve depression symptoms. The simple fact that you’re owning and caring for a dog can improve your self-esteem and well-being.

There isn’t much of a difference between particular dog breeds when it comes to their health benefits. In general, you should select a dog to help with your depression that same way you would choose any dog.

Author:
I’m Robert Evans  from Doggypedia! I’m super passionate about helping you care for your dog better by providing the best information and recommendations. Every day, I help more dog parents make smart decisions so their pet has a long and healthy life!

Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

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 When you want to raise awareness of your cause, amplify your advocacy activities and create change where it is needed most, social media is an important channel to share your message with the world.

But it’s not enough just to create content and push it out online. How you create, publish, and promote your content will directly impact the chances that people will see it and want to share it with others.  In this article, you’ll learn 10 tried and tested ways to help you maximize your social shares and increase your social reach.

1. Create Something Worth Sharing

Let’s get straight to the point here. If you want people to share your content, you need to give them something worth sharing. The New York Times Customer Insight Group did a fascinating study a few years ago on the psychology of social sharing. It named five primary motivations for sharing:

  • People want to better the lives of others 
  • People want the content to reflect their online identity 
  • People want to grow and nourish relationships 
  • People share because they like the feeling of having others comment on it and engage
  • People want to spread the word about something that they believe in 

Actionable Tip:  Create content that your audience will want to share because they believe it will be of value or interest to others. Before you post something, stop and ask yourself would this pass the re-share test above?

2. Ask Your Followers What They Want To Learn About

One way to ensure you are creating content your followers want to read about and share is to simply ask them what kind of content they’d like more of.  You can create quick polls on Facebook, Twitter, and Instagram and post a question such as “What content do you want to see more of?”

Actionable Tip:  To take your audience research a step further you could survey your followers to get a deeper understanding of their preferences. Survey Monkey, Polldaddy and Google’s own survey forms are all simple tools to use.

3. Curate Relevant Content

Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content.  Instead of more information what we really need is more accessible, understandable and credible information on which to base our healthcare decision-making.

One solution is to curate reliable, up-to-date medical information in a format that is easy for patients to access, digest, and understand. Content curation is the process of finding and aggregating information about a specific topic, synthesizing it to be most relevant to your audience, and sharing it in an easily digestible manner.  Curation can deliver many benefits including, establishing thought leadership and credibility, increasing visibility and driving social shares.

Actionable Tip: Read this previous PEN article to learn how to become a more effective content curator for your healthcare community.

4. Use Relevant Hashtags

If you are using social media to find and share health information, chances are high you are already using hashtags. Hashtags, a way for users to easily find similar themed content, are used regularly by millions of social media users on Instagram and Twitter.

Actionable Tip: For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

5. Grow Your Online Followers

The more people who follow you on social media, the more you can amplify your content and increase your social shares. A great way to find like-minded followers is to search using disease-specific hashtags or join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc

Actionable Tip: Read 12 Keys to Finding, Growing, and Nurturing Your Online Community for more tips on how to grow your online followers.

6. Add Images To All Your Posts

When it comes to creating content to support your message, the type of content you create matters. Humans are visual creatures — 90% of information transmitted to your brain is visual — and because of this people are drawn to visual elements that attract their attention. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content.

Actionable Tip: Add an image to all your online posts — even those that aren’t obviously visual. Read this guide to creating your own eye-catching visuals.

7. Create Infographics

Information graphics or infographics are stand-alone graphic visual representations of information, data or knowledge. They are a form of visual content that is highly shareable; consistently “liked” and shared on social media three times more than any other type of content. In fact, the words “infographic” and “infographics” are searched an average of 547,000 times per month in Google.

Actionable Tip:  People are irresistibly drawn to facts, figures, and statistics. When you combine these with compelling graphics you have a persuasive tool to help your content cut through the online noise. A tool like canva.com will make it easy for even the novice designer to create interesting infographics.

8. Write Better Headlines

One of the ways to make your content more shareable is to write better headlines. Think about how many headlines you read every day while searching online or browsing social media. What makes you actually click on an article or post to read it? Quite often it’s the headline. Your headline is the first (perhaps only) impression you make on a prospective reader so it’s worth taking time to create a good one.

Actionable Tip:  Use numbers in your headlines. Several research studies have shown that headlines with numbers tend to generate significantly more social shares and engagement (interestingly, research shows that headlines that contain odd numbers have a higher click-through rate than headlines with even numbers).  When adding numbers to your title, use the numeral, not the word, as we tend to scan headlines online and a numeral makes your title more scannable.

9. Repurpose Your Best Content

Identify your top performing content in terms of shares, comments, likes, etc.  Now brainstorm some ways in which you can take this content and turn into something else.  For example, create an infographic to highlight key statistics, turn a quote into a graphic, or develop a downloadable eGuide.

Actionable Tip:  There are so many possibilities to get more out of high-performing content and increase your shares. Read How To Create Six Unique Social Shares From Just One Piece of Content for ideas on how to repurpose your content.

10. Analyze What’s Working For Your Peers

Look at the type of content your peers are creating. Identify which content is performing well for them in terms of social shares, comments, likes, etc. Think about how you can take a piece of content they have created and add your own insight and expertise to make it more even more valuable to your followers. I don’t mean you should copy their content verbatim, but use it as inspiration for your own content.

Actionable Tip: I use Buzzsumo.com to see which popular content is most shared right now on social media. These are the topics people want to read about so it’s worth brainstorming ideas around this content.

As you can see, with a little imagination and creativity there are many ways to increase engagement and reach with your existing content.  Try some or all of these tips and do let me know how it goes for you.

Open Mic #patientchat Highlights

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Last week we hosted an “Open Mic” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Appreciate the Little Things

Help Others

“Normal is a dryer setting”

Full Transcript

5 Inspiring Books That Every Cancer Patient Needs to Read

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In the pursuit of accomplishing a bunch of things from your bucket list do not ignore some reading practice. The words on paper of famous authors always light up our soul and make us believe in the best.

 1) Charlotte’s Web, by E.B. White

Plot

This is a wonderful novel written by American author E.B White about a childish courage Fern and her friend spider Charlotte saving the life of one farm inhabitant named Wilbur. The main character Fern is staying up late at the barn to look after her uncle’s animals. Soon, the farm life becomes the part of hers, that she makes friends with everybody there, including a little piglet Wilbur. It does not know yet what awaits him when spring finally comes, when the period of feast and holiday come to all families. Its destiny is to be slaughtered before Easter. So, in order to prevent this from happening Charlotte decides to write a message on her web, which then is recognized by the uncle Mr. Zuckerman as a miracle. Being proud of the extraordinary web the farmer decides not to kill the piglet and instead sends Wilbur and Charlotte to the country fair as an exhibit. At this time, Charlotte is pregnant and after laying eggs she dies. However, her new born kids stay behind with Wilbur.

Summary

This story brings up the question of justice and loyalty towards animals. We often proclaim and judge things just by its cover. Whether it is a human or an animal, we always follow that deceitful idea of one type being much better than the other. Pigs are seen as unfortunate creatures that are destined to be slaughtered. However, the humankind revealed by Fern, Charlotte and Wilbur proves to disregard any unfairness of today’s world and demonstrates how we should cherish the precious moments with our besties and friends.

 

2) Tonight I’m Someone Else by Chelsea Hodson

Plot

It is a very good creation demonstrating alienation and loneliness. The story covers the events of misfits who are some awkward newbies in a relationship. It is an amazing and breathtaking romance book that makes you fully immerse into the relationship experience, as well as forge your understanding about love, sex, truth, secrets, commitment and permanence. This book is both painful and insightful, because it reveals the truth about romance in the way that other writers do not dare to talk. Chelsea Hodson tries to examine her physical and emotional self and comes to the understanding of her own self worth.

Summary

It is an amazing example of how to love yourself and be loved by others. It also makes us think of what self-sabotage is and how we can stand it. The very popular citation of her book asks: “How much can a body endure?”, and the answer is really short: “Almost everything”. Which is a very deep and bizarre statement at the same time, so everyone understands it quite differently.

3) All the light we cannot see by Anthony Doerr

Plot

This is an eerie and, at the same time, very exciting story of the wartime telling us about two peers. Their life is a terribly harsh survival not only because of the Second World War but also their bad luck. One of the main characters, Marie-Laure LeBlanc whose father is entrusted with a precious diamond called the Sea of Flames, joins the French resistance and along with her uncle broadcasts the information to their Allies. Another character, Werner Pfennig is doomed to spend all his life in a coal mine because he is an orphan child. However, Werner is invited to destroy the anti-German radio broadcasts. When he begins his attack, he gets trapped by the Allied forces. Surprisingly for the boy Maria-Laure saves him with his broadcasts by nearly sacrificing her life. But Werner does not give up and rescues the girl that is haunted for the Sea of Flames like a real hero.

Summary

All in all, the book discovers the real tragedy of war causing some innocent people to experience violence and injustice. Also, it describes the human miracle. Even though Werner and Marie-Laure are on the opposite sides of the front lines, they still remain kind and merciful to each other. With their example we begin to understand how important it is to forge goodness inside of you.

 4) Fahrenheit 451 by Ray Bradbury

Plot

That is a well-known masterpiece by Ray Brudbury about a fireman who is given a mission to burn all the books in the world that he comes across. Books become forbidden everywhere and for everyone but it seems to be not a big bother for people. Humankind is used to engaging with televisions, radios and other technologies and no one is concerned about nature, development, hobbies like reading books and so on. Books simply become useless and they just need to be destroyed. The main hero, Montag gets an enormously big satisfaction when burning things, but once he meets Clarisse McClellan he starts realizing that he is dramatically unhappy about things he is entrusted to do. His occupation requires him to burn the books along with a house of its owner. Montag’s neighbor Clarisse chooses to be burnt with her books at her own house, and this heroic gesture, actually, makes him think. The thoughts about human’s intrinsic values arise in his head.

Summary

This fireman life-story demonstrates the Western societies’ addiction and dependence on the media and conformity in the 1950s. It makes us visualize a real image of people’s intelligence and curiosity that drives their desire to not give up on reading or of people’s ignorance that makes them burn this intellectual garbage.

5) Your art will save your life by Beth Pickens

Plot

This book is rather aimed to be a letter to artists. Beth Pickens so passionately tells us about art and navigates us as a reader through the path of motivation, self-reflection and discovery. It underlines to follow your artistic dreams regardless of anything. The real fallacy is to live your life without a purpose and bring nothing meaningful to this world. The author gives us amazing advice to all the people who have talents to maintain their artistic practice by always looking at the better side of it. Like any other thing, art requires much patience and effort, so, of course, there might be some ups and downs on your artistic path. These failures should be taken as lessons and these achievements should be understood as rewards. The saying “your art will save your life” embodies so much sense, because every creation is eternal in its way. Develop your creativity and it will save yours too.

Summary

Art is an only emotional outlet that has some divinely creative roots. If we are granted a certain talent in our life, we should show it to the whole world. We need to seek ways to make our art speak voices, provoke thoughts and generate ideas in other people’s hearts and heads.

Resources: 

https://www.lifehack.org/articles/communication/30-books-that-everyone-should-read-least-once-their-lives.html

https://www.mydomaine.com/best-books-about-love-4770377

Author’s Bio

Lilian O’Brien is a passionate journalist who enjoys writing about psychology and human relationships. Over the course of her career, she was a regular contributor to major media publications, and currently, she serves as an editor for onlinechatdatingsites.com.

Survivors Living Strong

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About a decade ago, as a member of her local YMCA, Jennifer Buckwalter happened to notice a group of people wearing matching t-shirts. She’d watch them use the equipment and go to group classes together. She was intrigued. Sometime later Buckwalter became a spin instructor at the Y and she learned the group she’d been observing was called Livestrong at the YMCA, a unique fitness program for cancer survivors. Now Buckwalter leads those groups of survivors-in-matching-t-shirts on a health and fitness journey.

“It’s about being healthier in spirit, mind, and body. That’s what we push all the way through,” says Buckwalter of the 12-week Livestrong at the YMCA program, which was developed in 2007 by the Livestrong Foundation when feedback from cancer survivors identified a need for help returning to physical activity after treatment. Two Rivers YMCA in Moline, Illinois, where Buckwalter is an instructor, was part of the Livestrong at the YMCA pilot program. The program is offered, at no cost, to cancer survivors who are 18 or older, and it comes with a t-shirt. While the program is open to participants with all types of cancer, Buckwalter says she is most likely to have survivors of breast cancer, lung cancer, prostate cancer, and melanoma in her groups. Survivors are eligible for the program if they were diagnosed that morning or 20 years ago, she says. Past participant Marvis Hafner was a five-year survivor of breast cancer when she did the program. She had a friend who told her about the program and encouraged her to sign up, and now she says, “It was probably the best thing that ever happened to me and my husband.” Her husband also participated in the program as Hafner’s support person. The program is limited to 12 survivors per class, plus each survivor can bring a support person, also at no cost. The program, largely funded through donations, is offered in 791 YMCAs across the country.

Of course, programs will differ from location to location, but they all follow the basic formula developed by the Livestrong Foundation. Participants are required to provide medical releases, a complete health history, and list of medications. In addition, on the first day of the program, each participant undergoes an extensive assessment for mental health, ability to perform daily activities, and tests in flexibility, walking, strength, and balance. “The assessment helps to structure class around our participants,” says Buckwalter, a National Exercise Trainers Association certified personal trainer and YMCA exercise specialist for chronic disease programing who underwent additional training to be a Livestrong instructor. In the training she learned how to do patient intake screenings and medical histories, and she learned about cancer. She had the opportunity to interview survivors and shadow another Livestrong instructor. She found that her certifications, her Livestrong training, her background in social work, which she studied in college, along with her experience of working for Palmer College of Chiropractic, where she says she learned a lot about optimum health, all came together to help her better serve the course participants. “If you’re going to do the program, we require a commitment and that commitment is to yourself,” says Buckwalter who believes in and has high expectations for the participants in her classes. “I’m not going to baby them,” she says. That’s my way of empowering them.”

At Two Rivers YMCA, most of the participants are 50 or older. The classes meet two days a week for an hour and a half. There are three classes offered each session, two in the daytime and one in the evening to accommodate those who work during the day. There are two sessions a year, fall and spring. “The first week is awkward”, admits Buckwalter. She says she tries to keep the mood lighthearted, and she and her co-instructor facilitate group conversation so participants have a chance to get to know each other, but, she says, by week four or five, the group takes on a life of its own, and the participants really take hold of the group. “It’s not designed to be a support group,” she says, but notes that it often becomes one. “It gave me a sense of belonging,” says Hafner. “I had retired, and I missed the camaraderie.” With the program she says there is always someone there to support you. Often, the connections that are made in the group continue after the program concludes. Buckwalter helps to facilitate the connection thanks to an idea from one of the members of the first group she led who started a phone tree among the participants of her group. Now Buckwalter offers that idea to each of her classes.

The program is tailored to each group and each individual participant based on the assessments and fitness levels, but the overall idea is to get everyone moving and comfortable working toward whatever health and fitness goals they have. Participants learn how to best use a gym to fit their needs. They are taught to set up a workout and use fitness equipment and machines. They also get to try group classes, such as gentle yoga or low-impact Zumba. Health education is a big component of the program. “We talk about the importance of hydration, the importance of moving the body, and paying attention to what they are putting in their bodies,” says Buckwalter. The program also brings in professionals from the community to cover a variety of topics from nutrition to proper footwear. Hafner says she enjoyed the speakers, and she and her husband both benefitted from the extra push to exercise. “I was exercising at home, but not enough,” says Hafner, a retired nurse.

Some participants, like Kari Wood, are already physically fit when they start the program, but they are still able to make personal gains. “I felt like Livestrong supported my health journey of wanting to become the best version of myself…” says Wood, who found that the program addressed her mental health in positive ways. “My biggest benefit from the entire Livestrong program was the emotional side of it for me,” says Wood, a thyroid cancer survivor who, now in her early 40s, was one of the younger members of her group. She says that when she was diagnosed and being treated for cancer, and all the complications that came with it, she suppressed a lot of her feelings, but it was with the Livestrong program that she was able to work through all those bottled up feelings. “In my heart I knew the Livestrong program would allow me to be able to openly recognize, express and validate the private feelings of pain I endured during my time with cancer. No more hiding those thoughts and feelings like I did for so long. For me it was personally more of an emotional part of my journey instead of a physical one.”

Wood’s mother participated in the program with her, and she says it helped them grow closer. “It was an opportunity for me to truly open up and express how I felt, even though some of my words weren’t easy for her to hear. It opened up a whole new world for us and made us grow closer…I am incredibly grateful for that because I didn’t realize how much I needed to share and was holding inside until Livestrong came along.” Wood adds that being able to hear the stories of the other participants helped her mother gain insight into what she had gone through as a cancer patient.

Whatever aspect of health a participant needs to address, Buckwalter aims to show each person how to make their goals attainable. “We try to show them that a healthy lifestyle can be variable and can be personalized,” says Buckwalter. “The goal is to show them they can do it on their own.”

Buckwalter says she has found the Livestrong program to be very successful and there is data to prove it. Researchers from Dana Farber Cancer Institute and Yale University found that the Livestrong at the YMCA program yields significant increases in physical activity, overall quality of life, and fitness performance. They also found that the program participants had a significant decrease in cancer-related fatigue. In addition, the National Cancer Institute says, exercise is generally safe for cancer survivors and every survivor should maintain some level of physical activity. There is even research that shows that exercise can lower the risk of death for people who have breast cancer, colorectal cancer and prostate cancer.

However, Buckwalter doesn’t have to rely on the research to know the program works. She sees it firsthand. Progress is measured during the last week of the program. Each participant does a post program assessment that uses the same criteria from the assessment at the beginning of the program. “For the most part we always have positive outcomes and huge leaps, huge leaps for these people,” she says. The program ends with a celebration that includes healthy snacks, and a past-participant comes in to share their experience with the class. Buckwalter, who takes pictures throughout the program, presents each participant with an album of photos.

When they have completed the program, participants are offered a nine-month, reduced-rate membership at the YMCA. Buckwalter says that four or five survivors from each group take advantage of the membership. Hafner and her husband both continue as Y members. She calls the Livestrong program a steppingstone into fitness and is thankful for the program because when it comes to exercise, she says it would have been too easy not to do it. Wood, who has been a member of the YMCA since she was three, also continued working out at the Y. “I loved that we tried so many other classes and physical activities. It made me want to attend new YMCA classes after the program was over. I became much more involved at the YMCA after Livestrong was over with. In turn, my three kids are much more active than they used to be because exercising and taking care of ourselves as best as we can is now a part of our family’s healthy lifestyle.”

You can find more information about the Livestrong at the YMCA program at livestrong.org. You can use your zip code to do a search on the website to see if there is a Livestrong program at your local YMCA. Please note that there may be a waiting list for the program, and that there may be a fee at some locations.