Tag Archive for: PEN-Powered Activity Guide

Finding Your Support As a Newly Diagnosed Patient

From PEN-Powered Activity Guide VIII: Supporting Your Support System

Finding Your Support As a Newly Diagnosed Patient from Patient Empowerment Network on Vimeo.

View PEN-Powered Activity Guide VIII


Lisa Hatfield

It’s hard to know how much to share, when to share, who to share with, when you have kids, when you have colleagues, when your friends and neighbors see that you’re maybe not doing so well, or know that you’re in the hospital, they want to know, but it really has to be a decision that is best for you and taking care of yourself during that time and your family at that time. So, one of the things that kind of that flows into another question is when friends and family hear that, people jump in and they want to try to help you get messages, phone calls, text. How can I help? What can I do? How are you feeling? For me anyway, I loved that kind of support, but it does get overwhelming, and I know for anyone who has gone maybe to have stem cells collected or staging, when you’re gone for several weeks at a time, it’s really difficult to keep up on those messages and everyone’s intentions are so good. And they really do want to help. So, we had actually set up a Caring Bridge page where I could communicate on my own time or my husband could communicate the information, so really, like you said, doing things on your own time and just disclosing as much information as you want to.

There was a patient who had asked me how to deal with a family member who as they were talking about their myeloma, as he was explaining it to her family, that person got very choked up, and so she said, I felt like I was trying to take care of them as I was dealing with my own diagnosis, so I didn’t really know exactly what to say other than just be sure to take care of yourself at that time, whatever I pray for you is going to be the best… Whatever is best for you is going to be the right thing for you, but the next question I had is when people do start asking, how can I help… Can I drive your appointment? Can I bring meals to you… Maybe you want them to help out, which is a pretty easy one, but what if you don’t want them to help out? Again, these are questions your doctors might not be able to answer, but they happen a lot with myeloma or cancer patients, how do you handle that when people are asking, either you don’t have the time to respond, or maybe you don’t want the help, have either of you have any of you had that experience with your friends and family network.

Sheri Baker:

Yeah, I had a lot of people jump in and offer meals or whatnot, in the beginning, I accepted. Especially in the beginning when I was starting to…Well, when I was in the hospital too, I was doing my treatment, I was learning how to do dialysis, so the first two to three months were kind of hectic, and I had a friend who offered. She’s like, every Wednesday, I’m going to bring you a meal.

And I accepted that up until about like Thanksgiving. And I called her and I said, I’m back on my feet. But I reserve the right next year when I have to have my stem cell transplant and be in the hospital again to ask you to help out again. And she says, definitely. And same thing with other friends, I was on a renal diet, so they want to know what can we make for you, so you just tell them, but there does come a point in time where you say, I’m doing good now, but down the road, can I call you and ask you to help out again with meals, and then after my stem cell transplant, before I came home from the hospital, a group of friends were like, We want to come to clean your house, and I said, Great.

So, they did come and clean my house, and that was, I have to say that’s uncomfortable because now they’re like all over your house, and you don’t know what kind of state your house is going to be in ’cause you’ve been in the hospital for almost three weeks, so you’re a little embarrassed about the dust bunnies and how bad the bathroom might look, but it was welcome help, even though you might be a little embarrassed about how dirty your house really is, but I think that it was.

For me, it was easier to say, I don’t need to help right now, but next year or in a couple of months, if I need some help, can I call you that and ask for help, so that’s maybe one way to… If you don’t want the help right now to still not totally shut them down, but say, I’d like to have some help in the future.

View PEN-Powered Activity Guide VIII

Embracing the New Normal

People are going back to work, kids are going back to school, and more and more businesses are opening up. But, at least for the time being, it looks like the coronavirus is here to stay, so we are going to have to make adjustments to our lives and embrace the new normal. Whether you are running out the door or cautiously putting a toe out, it’s important to remember that life in the time of Covid-19 is a marathon, not a sprint. There is no one way to move forward, but if you need help getting started, we’ve rounded up some of the best advice from our past PEN-Powered Activity Guides to get you started.

Stay Connected

Social distancing, or as we like to call it, physical distancing does not have to mean loneliness. Depending on your comfort level and/or the restrictions in your area, you can stay connected in a variety of ways. Some states have relaxed their stay-at-home orders, and you can now resume many normal face-to-face activities including dining out or returning to places of worship. If you live in one of those areas and want to take advantage of in-person meet-ups, make sure you continue to follow the health and safety guidelines by:

  • Wearing a mask
  • Frequently washing your hands
  • Avoid touching your face.

If you aren’t quite ready for face-to-face interaction, there are many ways to connect such as participating in online communities, using Facetime or Zoom to get together with friends, or joining a group such as a virtual book club. Find other ideas to stay connected in PEN-Powered Activity Guide (PPAG) II, page 1.

Utilize Technology

If the 2020 quarantine taught us anything it is that technology is one of our greatest modern-day assets. Thanks to technology we were able to continue to see doctors and therapists, see the world (PPAG II, page 27), keep up with our workouts (PPAG IV, page 34), and manage our accounts all without leaving our homes. As we move forward, the ways we used technology during quarantine are influencing our new normal, especially when it comes to our health. One of the best ways for patients to take charge of their health is to keep track of all aspects of it. 

Managing prescriptions (PPAG II, Page 4), paying bills, scheduling appointments, and keeping up with test results can all be done online, and now many of the time-consuming appointments of the past can be done through telemedicine saving both patients and doctors valuable time. Learn about telemedicine in detail from PPAG III, pages 7-21.

Practice Self-Care

Your schedule is likely filling up again making it hard for you to take time for yourself, but it’s important to recharge. Make time for relaxation (PPAG II, page 19) and exercise. There are substantial benefits from a walk around your neighborhood (PPAG II, page26), or a few minutes of chair yoga (PPAG III, page 25). Practicing mindfulness such as meditation or yoga can also benefit your overall health (PPAG IV, page 14). You don’t have to spend a lot of time on self-care, but the time you do spend will serve you well.

Stay Safe at Home

You may be leaving your home more now, but when you are at home it should feel like a safe space, especially when the world can feel a little unstable right now. Keep your environment as peaceful as possible by decluttering and surrounding yourself with things you love. You can find some other ways to make your home a sanctuary in PPAG IV, page 18.

Follow Best Practices

By now we all have heard the Centers for Disease Control’s guidelines to help prevent the spread of coronavirus. They include washing hands, wearing masks, and keeping your distance. In addition, you can help to stay healthy by eating well to improve immunity. Getting proper nutrients, prebiotics, probiotics, vitamins, and minerals are all ways to help your immunity. Learn more about eating for your immunity in PPAG IV, pages 26, 27, and 28. You can find other tips about eating well in PPAG III, pages 30 and 31.

One other thing to remember is that if you were doing something during your coronavirus quarantine that you enjoyed doing, keep doing it. New exercise program? Keep it up. Meditating to relax? Keep it up. Did you find a podcast you love? Make time to listen to it. If you need a new podcast, there’s a great list in PPAG II, pages 16 and 17. The bottom line is this: while things may look and feel different, the fundamentals remain the same. Eat Healthy, Be Active, Sleep Well, Wash Your Hands (PPAG IV, page 25).

Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

During the pandemic, all of us have had to do some adjusting, some more than others. As cancer patients, we recognize the “new normal” everyone else is experiencing. While this can be detrimental, it can also be seen as somewhat gratifying. The non-cancer world finally understands what we’ve gone through and/or are going through on a daily basis and for the rest of our lives. Yet we’ve all learned new skills and coping mechanisms to make the best of our situation:

Virtual Appointments (Telehealth)

By now, the majority of patients have experienced at least one telehealth appointment where we see a doctor, NP, PA, etc. virtually. Whether this a completely new experience or not, there are many ways in which we can benefit from these appointments, which, hopefully, continue into the future.

What can be applied in the future:

  • Writing down a list of questions before your appointment so that nothing is missed
  • The feeling of comfort with your health care professional, especially if they weren’t in a white coat. They’re humans just like us
  • Asking questions when you don’t understand something – there is time!
  • The importance of having a caregiver as a second set of eyes and ears

Being Active

Gyms were closed (and some still are) for a long period of time, which forced us to be creative in being active.

What can be applied in the future:

  • If you watched YouTube videos or downloaded fitness apps, continue to use them to apply those movements to your routine
  • If you tried free classes offered by a local studio or gym, see what these places offer in-person
  • For motivation, grab a family member of friend to keep you accountable


Perhaps the hardest part of going through the pandemic is the mental aspect, especially for cancer patients who are considered more vulnerable.

What can be applied in the future:

  • Continue using apps and YouTube videos to guide you through meditations
  • Keep a journal to write down your feelings
  • Set intentions at the start of each day
  • Remember how far you’ve come and what you can be grateful for

Family and Friends

Social distancing and wearing masks were suggestions (and in some states mandatory) to help stop the spread of the virus. This led to family and friends not being able to see one another, often for months. What’s more is the masks often concealed our expressions, making communication a little bit harder.

What can be applied in the future:

  • Spend more time with people who care about you, knowing it is possible for it to be taken away from you
  • Practice being in the moment, really focusing on what the person is saying and watching their facial expressions
  • Remember your own needs: people may now want to get together more often, but that may not be possible due to a number of factors, including your place in treatment, symptoms, and mental/physical/emotional states. Take the time you need for yourself

Tomorrow’s Medicine Today


From PEN-Powered Activity Guide V, beloved medical oncologist Dr. Bora Lim of The University of Texas MD Anderson Cancer Center walks us through what a clinical trial is, the phase of how drugs get approved, and how the pandemic crisis has amplified the criticality of clinical trials.

What is a Clinical Trial?

What is a Clinical Trial? from Patient Empowerment Network on Vimeo.

How Do Drugs Get Approved?

How Do Drugs Get Approved? from Patient Empowerment Network on Vimeo.

Will Pandemic Transform Future of Clinical Trials?

Will Pandemic Transform Future of Clinical Trials? from Patient Empowerment Network on Vimeo.

Clinical Trials as an Empowerment Tool

Clinical Trials as an Empowerment Tool from Patient Empowerment Network on Vimeo.