Five Ways the PEN Network Manager Program Can Support Your Cancer Journey

Our Network Manager program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our network managers are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Network Managers. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Network Managers will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Network Managers. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Network Managers

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Network Managers. You can easily see the community that each Network Manager serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Network Manager resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

The Power of Journaling During Cancer Treatment

There are two ways to fight cancer, both of which are equally as important. The first is physical and the second mental. Journaling might not be able to help with the physical symptoms, but easing the mind can truly help in such situations.

By providing a safe place to store your thoughts and experiences, you will be able to find a great source of power. If you have never thought about journaling before, this might be the perfect time for you to give it a try. Here are some important reasons why this might be a very great decision.

1. Keeping track of all important moments

Some people believe that battling cancer is only filled with negative moments and experiences. While that is true to a big extent, there can be plenty of memorable moments that you might want to keep track of. The beginning of your treatments is a moment that you can write about and think about when this situation is over.

Other important moments might include family gatherings, important presents you might receive, very bad and very good days that stand out in your treatment course. Just because a day way difficult doesn’t mean it should be considered bad. At the end of this difficult journey, you will be able to look back at everything you wrote and remember the good and bad times.

2. Helping ease certain symptoms

Another great reason why journaling can truly help cancer patients during their treatments is because of symptom management. Research has actually shown that journaling can help with combating symptoms and dealing with the physical size of things.

Writing about how you feel and what you are going through can help you sleep better and feel more energetic. Getting plenty of rest will allow you to feel less nauseous, be in a better mood and battle everything with a stronger will. The more you face your symptoms, the stronger you will feel through your treatment.

3. Fighting against the stress

The stress that can be caused by such a difficult diagnosis is great and can truly affect your mood and outlook on life. Being under stress can make you feel tired, mess up your sleeping schedule and make you feel more negative about everything. This is not ideal for any situation you are in in your life and there are ways to overcome it.

Journaling can provide you with a safe space to write everything you have in your mind. During your treatments, you will possibly want to appear strong in front of your family and you might not want to share everything you feel. You can write all your thoughts in your journal and let everything out. This way you will be able to handle everything you face and feel a lot less stressed.

4. Reminding yourself of things you love

When dealing with any hardship in life, it is important to keep thinking of things that bring you joy. Journaling has helped me create a notebook full of memories, which I can go through any time I need some positivity in my life. You don’t only have to put words into it but anything and everything that makes you think of memories and people you hold dear.

In your journal you can keep stickers, receipts, drawings and cards from loved ones. Then you can write how receiving these things made you felt. When the days get difficult and you are struggling, open your journal again. Read through everything nice you have collected and it can help you remember all the reasons why this difficult process is worth it.

5. Seeing all the progress you have made

Last but not least, another important reason why journaling is so helpful during cancer treatment is that it can help keep track of your progress. There are going to be many days that will be hard and many that will be good and filled with hope. In order to be able to go through both, it is important that you keep track of everything new that happens in your journey.

The good days will help you remember that things will get better. The difficult days will allow you to live in the moment and work on staying positive. Journaling this experience can also help your family better understand what goes on in your head and how they can help. After you have successfully put this difficult period of your life behind, you can even share your story with other patients through your journal.

Battling cancer every way possible

Journaling is a creative and fun activity that can help you deal with certain symptoms and negative thoughts during your treatment. Even if you have little experience with writing, journaling gives you the chance to get creative. You don’t need any special skills in order to journal. You just need a notebook, some fun colors and a few thoughts in your head.

Through writing about your experiences, you will be able to express how you feel and let everything run its course. This treatment course might be tough, but writing everything down will help you see just how much progress you are making. This can truly help you feel stronger mentally and physically and overcome this situation like a true warrior!

Putting the Human Back in Healthcare

I recently listened to one of my favorite podcasts, “What Should I Read Next.” The premise of the podcast is the host, Anne Bogel, chats with a guest about their reading life, including three books they love, one book they don’t, and what they’re currently reading. In a recent episode, she spoke with a physician who was about to retire. She said that she had been trying to read more books with different genres, as her main focus for the majority of her life and education had been science-based texts. She grew up in the library reading a variety of books and still tries to educate herself by going to lectures and author talks. However, she was looking for more books that focused on the humanities. HUMAN. Which got me thinking about my background in health communication and my passion for health literacy. I know that one of the many reasons that doctors go into the medical field is because they want to help people. They have a strong sense of empathy and the passion to care for others. However, throughout all of the scientific jargon that they retain and medical knowledge that they gain, they may lose the ability to connect one on one with the patient, to really understand what’s going on behind the aches and pains. Plus, office visits with patients are getting shorter. Doctors don’t have the time to really understand what is going on with the patient before they try and get them in and out to move on to the next. They feel rushed, and as a result, the patient can walk out not knowing what happened. According to the Agency for Health Care Research and Quality, a division of the U.S. Department of Health and Human Services, poor communication can have a detrimental effect on people’s health. For example, patients may not comply with doctors’ orders because of a lack of understanding. It can also hurt medical practices as patients have the option to leave doctors who they feel do not communicate well and therefore, a lack of trust develops.1

So how can we fix this? Can we emerge communication education into the medical curriculum, including required continuing medical education? Can we focus on the human connection that led these doctors to practice medicine in the first place?

Here are a few suggestions for physicians:

  • Pay attention to the patient though active listening. Repeat back to them what they’re saying to develop an understanding.
  • Use lay-friendly language. Patients come in because they feel sick, something is wrong. Being bogged down with medical jargon isn’t going to help.
  • Use the teach-back method. Have the patient repeat back what you told them.
  • Use pictures of graphics to explain complex concepts.
  • Talk to them about other aspects of their life. It’s not just an illness you’re treating, but a patient with a life outside of the doctor’s office.
  • Show that you have the time to listen even if time is short. Patients know when they’re being rushed.

What do you as a patient want from your doctor? What do you feel is lacking in the patient-physician relationship?


Sources:

  1. https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6gtraining.html