Tag Archive for: well-being

From Cancer Diagnosis to Healing: 21 Tips and Resources for Body, Mind, and Spirit

Last month, I quietly marked a significant milestone—20 years since my breast cancer diagnosis. It’s a strange thing, this “20-year cancerversary”. It feels like a lifetime ago, yet it still feels raw and surprisingly recent. The shock of that day, hearing the words “you have cancer”, and the surreal weeks and months that followed, remain forever etched in my memory.

Looking back, I often think about the things I wish I had known back then—truths and lessons that could have eased the journey or offered comfort in moments of anxiety. That’s why I want to share some of those insights with you if you’re beginning your own cancer journey. I hope these tips will provide guidance, strength, and perhaps a little light to help you navigate the challenges ahead.

1. Become Your Own Best Advocate: Take charge of your healthcare journey. Ask questions, seek second opinions, and clearly communicate your needs and concerns to your medical team. Don’t hesitate to advocate for information that is tailored to your specific situation, age, and lifestyle.

Further Reading: Patient Advocacy: Understanding Your Illness – Patient Empowerment Network

2. Educate Yourself: Learn about your specific cancer type, treatment options, and the latest research. Knowledge is power and can help you make informed decisions. Use trusted sources like your medical team, cancer organizations, and support groups. Understand that the right information, provided at the right time, empowers you to make informed decisions.

Further Reading: How to Read and Understand a Scientific Paper – Patient Empowerment Network

3. Participate in Shared Decision-Making: Shared Decision Making (SDM) means you and your doctor work together to make choices about your healthcare. You’ll learn about the pros and cons of different treatments, how likely they are to work, and what side effects might happen. Don’t be afraid to ask lots of questions until you feel comfortable with the options presented to you.

Search here for articles on SDM.

4. Explore All Treatment Options: Discuss various treatment approaches with your doctor, including standard medical treatments, clinical trials, and complementary therapies like acupuncture or massage alongside your regular medical care.

Search here for articles on clinical trials.

5. Understand Cancer-Related Fatigue (CRF): Cancer-related fatigue is different from the tiredness you feel after a long day. It’s like having your battery completely drained, and no amount of sleep or rest seems to recharge it. This kind of fatigue can be overwhelming and make it difficult to do even simple everyday tasks. It’s important to talk to your doctor if you’re experiencing this, as there may be ways to manage it and improve your energy levels.

Read How To Cope With Cancer-Related Fatigue for more tips and information.

6. Be Aware of “Chemobrain”: Understand that cancer treatment can affect cognitive function. This is often called “chemobrain,” even if you didn’t have chemotherapy. It can feel like a mental fog, making it hard to remember things, focus, or think clearly. This can be frustrating, but it’s important to know that many people experience this. Staying mentally and physically active can help your brain recover. This could include things like puzzles, reading, socializing, and light exercise.

Further Reading: Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes – Patient Empowerment Network

7. Manage Your Energy Bank: Be mindful of your energy levels. Think of your energy as a bank account – balance energy expenditure with rest and relaxation to avoid “overdrawing” your reserves. Prioritize tasks and schedule activities for times when you have more energy. Build in rest breaks throughout the day.

8. Engage in Light Exercise: Even though you may not feel like it, regular light exercise can help reduce fatigue and improve your mood. This doesn’t have to be anything strenuous – a short walk, some gentle stretching, or chair exercises can make a difference. Start small and gradually increase your activity level as you feel able. Listen to your body and don’t push yourself too hard. Even a little bit of movement can go a long way in improving your overall well-being.

Watch: What Role Does Exercise Play in Cancer Treatment? – Patient Empowerment Network

9. Eat a Healthy Diet: Nourish your body with a balanced diet that supports energy levels and avoid processed foods. Choose a variety of fruits, vegetables, whole grains, and lean proteins. Drink plenty of water throughout the day. Dehydration can worsen fatigue and other side effects. If you’re struggling with taste changes or nausea during treatment, consult an oncology dietitian for personalized advice and support. They can offer strategies to manage these side effects and maintain adequate nutrition.

Further Reading: Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors – Patient Empowerment Network

10. Prioritize Your Well-being: Facing cancer can be incredibly stressful, and it’s easy to get caught up in appointments, treatments, and worries. But taking care of your emotional and mental health is just as important as taking care of your physical health. Engage in activities that bring you peace and relaxation, such as meditation, spending time in nature, or pursuing hobbies. Even a few minutes of quiet reflection can help calm your mind and reduce anxiety. There are lots of apps and online resources to guide you.

11. Build a Support System: Connecting with others can make a huge difference in your emotional well-being and help you cope with the challenges of cancer. Support groups offer a safe space to connect with others who truly understand what you’re going through. If you’re not feeling up to in-person meetings, online forums and communities can be a great way to connect with others from the comfort of your home.

Check out this list of Online Cancer Support Groups and Organizations by Type of Cancer – Patient Empowerment Network

12. Allow Yourself to Feel Your Emotions Fully: It’s perfectly normal to have a rollercoaster of emotions when you’re dealing with cancer. You might feel scared, sad, angry or frustrated. Don’t judge yourself for having “negative” emotions. They are a natural part of the human experience, especially during difficult times. Allowing yourself to feel your emotions fully is an important part of processing what you’re going through.

13. Tune into Your Feelings: Taking time to check in with your emotions can help you understand your feelings with more awareness. Think of it like taking your emotional temperature. Set aside a few minutes each day when you can be still and undisturbed. Take a few deep breaths, inhaling slowly and exhaling fully. This helps to calm your mind and body. Ask yourself “What am I feeling right now?” Don’t overthink it, just notice the first emotion that comes to mind. Name the emotion without judgment. For example, “I’m feeling anxious,” or “I’m feeling sad.” Pay attention to any sensations in your body associated with the emotion. Is your chest tight? Are your shoulders tense? Do you feel a knot in your stomach? Don’t try to change the feeling or push it away. Simply acknowledge it and let it be.

Important Note: If the emotion intensifies or becomes overwhelming, stop the exercise and try again later. You can also seek support from a therapist or counselor if you’re struggling with difficult emotions.

14. Write Down Your Feelings: Sometimes, it’s easier to make sense of your emotions when you put them into words. Journaling can be a powerful tool for processing your experiences and navigating the emotional ups and downs of cancer. Looking back on your journal entries can also help you see how far you’ve come and recognize your own strength and resilience.

Further Reading: The Power of Journaling During Cancer Treatment – Patient Empowerment Network

15. Pay Attention to Grief Triggers: Anniversaries of your surgery, diagnosis, and other cancer-related milestones can reawaken difficult memories and emotions. Be mindful of these dates and plan ahead for ways to cope with potential emotional triggers. This might involve scheduling time for self-care, talking to a loved one, or engaging in a relaxing activity. You might also consider creating a meaningful ritual to acknowledge the anniversary or milestone such as lighting a candle or visiting a special place.

Further Reading: Grief, Loss, and the Cancer Experience – Patient Empowerment Network

16. Accept Anxiety as a Normal Response: Anxiety is a natural response to a challenging situation. It’s like an alarm system that gets triggered when your body perceives a threat. In this case, the threat is the cancer diagnosis and all the unknowns that come with it. When you acknowledge and accept your anxiety, you can start to develop healthy ways to manage it. There are many effective strategies for coping with anxiety, such as relaxation techniques, mindfulness practices, and exercise. However, if you find that your anxiety is overwhelming or interfering with your daily life, reach out for help and support.

Further Reading: Coping With Scanxiety: Practical Tips from Cancer Patients – Patient Empowerment Network

17. Identify Your Body’s Stress Response: Stress can manifest in many ways, and often, our bodies give us clues long before we consciously register feeling stressed. Learning to recognize your unique stress signals can help you manage anxiety and take steps to calm yourself down. For example, when you’re anxious, you might find yourself taking short, shallow breaths, or your heart might pound or feel like it’s skipping beats,  Once you’re aware of your physical stress response, you can take steps to interrupt it. This might involve deep breathing exercises, progressive muscle relaxation, or mindfulness techniques.

18. Acknowledge Emotional Trauma: Cancer is more than just a physical disease; it can be a deeply emotional and psychological experience. It can shake your sense of self, challenge your beliefs about the world, and bring up difficult emotions like fear, vulnerability, and grief. Recognizing the emotional trauma of cancer validates your experience and allows you to give yourself the compassion and care you deserve.

Further Reading: Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery – Patient Empowerment Network

19. Honor Your New Reality: For many of us cancer is a life-altering experience. It can shift your priorities, change your outlook on life, and even redefine who you are. It’s important to acknowledge and honor this new reality, even as you grieve for the life you had before. Even in the face of adversity, there is potential for growth and transformation. Cancer can teach you valuable lessons about resilience, gratitude, and the importance of living each day to the fullest.

Further Reading: Finding Your New Normal: 7 Steps To Navigating Life After Cancer – Patient Empowerment Network

20. Find the Joy: Don’t let cancer overshadow the beauty and goodness in your life. Actively seek out experiences that bring you happiness and fill you with gratitude. Spend time outdoors, breathe in the fresh air, and appreciate the beauty of the natural world. Share laughter, stories, and hugs with the people who matter most to you.

Watch: Meditation on Joy – Patient Empowerment Network

21. Live with Purpose: A cancer diagnosis can be a profound wake-up call, prompting you to re-evaluate your priorities and consider what truly matters in life. This is an opportunity to connect with your deeper values and live each day with intention and purpose. Cancer may strip away the illusion of certainty, but it also illuminates what truly matters. Let this heightened awareness guide you as you rebuild your life, find hope in unexpected places, and honor the resilience you never knew you had. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

Wishing you strength and healing on your journey.

What Role Does Exercise Play in Cancer Treatment?

 

How can exercise benefit cancer patients? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss the benefits of exercise to cancer health and recovery, recommended exercise types, and tips for patient support and maintaining some level of activity. 

Download Resource Guide

See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

How Do Psychological Factors Impact Diet During Cancer Treatment?

How Do Psychological Factors Impact Diet During Cancer Treatment?

Transcript:

Lisa Hatfield:

How can staying active during cancer treatment benefit your overall health and recovery? In this Patient Empowerment Network RESTORE program, we’ll explore the vital role of exercise in cancer care and uncover how incorporating physical activity into your treatment plan may enhance your well-being and support a better outcome. 

Joelys, how can physical activity be safely incorporated into a cancer treatment plan? And what types of exercises are most beneficial for patients? 

Joelys Gonzalez:

Well, incorporating physical activity into a cancer treatment plan requires more of a personalized approach, considering the type of cancer or the treatment being received or the overall health. I often start this discussion with patients by letting them know the importance of exercising during and after treatment, explaining how it can help manage side effects such as fatigue, stress, and depression. I usually recommend starting with low impact activities such as swimming, walking, or gentle yoga, as long as, of course, the patient is able to move around, whatever you’re capable of, which can be just adjusted based on the patient’s energy levels and how they’re feeling on day by day. Of course, if they’re feeling low, they can start doing small activities, light activities, such as moving your fingers or moving your head around. 

I also stress the importance of listening to your body, making sure you know how your body works, and making sure that you’re not overstressing your body. It’s very important. Resting as much as needed. It’s very important to be able to stay active. To ensure safety, I encourage them to check in regularly with their healthcare team just to make sure that they are having a tailored, a personalized plan, a personalized exercise plan with them. That could be involving physical therapists or their dietician to make sure that they have a unique plan. And by making physical activity as flexible as possible and adaptable to their part of their daily routine, patients can enjoy its benefits without feeling overwhelmed and alone.

Lisa Hatfield:

Thank you for that. And I really appreciate your comments. And I know Nicole and I have talked before, even small movements like moving your fingers and your toes or any movement is better than no movement, because sometimes we are just flat out too exhausted or in too much pain to do much more. So I appreciate you saying that for patients that you can do any little movement and that’s beneficial. So thank you. And, Joelys, what are the potential benefits of maintaining an active lifestyle during cancer treatment, particularly regarding treatment outcomes and overall well-being? 

Joelys Gonzalez:

Maintaining an active lifestyle during cancer treatment can have some profound effects on both treatment outcomes and the patient’s overall well-being. And when I mentioned that physically, physically staying active helps fight the treatment-related side effects, such as fatigue or muscle loss or weight changes. It could also support the cardiovascular health, which is very important since most cancer treatments can affect your heart. For instance, if you do such light exercise like walking or cycling, that can help you improve your blood circulation, helping you reduce the risk of blood clots or other complications from the treatment.

And this can also help you mentally. Maintaining that regular physical activity can significantly reduce your stress and improve your mood, especially when it comes to anxiety and depression, which are the most common among patients living with cancer. I’ve seen patients who incorporate daily movements into their routine, which has made them stronger than they have been before in the sense of control over their overall health, which boosts their confidence and their resilience during their cancer treatment.

Additionally, exercise has been shown to improve sleep, which is often disturbed during their treatment. And from a social work perspective, engaging in group activities or even walking with a friend or a family member can reduce your feelings of isolation, the feelings of being alone, and it can actually help you in building that support network that you need through your cancer journey, which is very very important. I really reiterate that having someone next to you not just to talk and just to make small exercise that can help you a lot during your cancer treatment, and the overall maintaining an active lifestyle helps patients manage their treatment better and contribute to a higher quality of life during and after cancer treatment.

Lisa Hatfield:

Nicole, how can healthcare providers effectively support and motivate cancer patients to stay active despite the challenges posed by their treatment? 

Nicole Normandin Rueda, LMSW:

Great question. So healthcare providers are often the first line of defense, right? And so they have this unique opportunity to really invest in getting to know their patients, which will then in turn…it will be the strategy that they use whenever it comes to tailoring the actual like exercise plan, for each patient. What that means really is that we get to know the patient’s needs, their abilities, knowing a little bit more about their diagnosis or their treatment, the side effects, or potential barriers. The more, the better you can tailor the actual personalized plan for each patient.

That also means not just the oncology team, but all the ancillary services. So your physical therapist, your exercise specialists, there are movement specialists. I mean, there’s a whole, a plethora of resources that can be brought in to help make sure that a patient…their treatment stage, their overall health, any secondary or other diagnoses that they may be managing as well as their just physical capabilities are all things that we want to make sure are very…we’re thinking about those at all times. We want to make sure whatever it is that we’re asking them to do is safe and achievable and aligned with their needs.

The encouragement from your oncology team and hearing that you know what you’re doing great, your small steps are baby steps, but they are steps and we are proud of that. Kind of that affirmation is huge. The next thing I would say would be setting the realistic goals and being on top of the potential barriers. So we all know how great it feels to check something off a box or cross something off a list, right? So we want to give patients that sense of pride and the sense that they are able to do whatever it is that we’re asking them to do, even if it’s very small and manageable.

Our goal is to help alleviate any potential future issues or current issues, secondary to their diagnosis. So if that means it’s fatigue, if it’s pain, if it’s the circulation, all of these things that we want to alleviate or inhibit from happening or getting worse, that’s important that patients know why we’re asking them to do something and setting the goals that are small enough and achievable that they can feel that sense of accomplishment is a big deal. Again, I mean, I can’t say this enough, I want every patient to know they are not alone. There are fantastic resources online to get, even if it’s stretching exercises.

I mean, there are things that are tailored to people with cancer that are absolutely incredible and free, that patients should be able to have the support that they need. Not just emotionally, but also physically, if that’s in-person or virtual, there are resources available that can help get whatever it is that patients need under their belt and so that they have the tools they need to go and accomplish whatever it is that they are being asked to accomplish. And that gives them that sense of pride that also makes it usually a success story, right? At least for that small piece of their treatment, they can say, I was able to do what it is that you asked me to do. That’s great.

And healthcare providers, like I said, are the first line of defense. They’re the ones that are checking in and asking the questions and so making sure that we’re always asking, but also listening to what it is that patients are saying. So if they’re saying, no, I didn’t really get around much today. Maybe we need to tailor what it is that your homework is going to be for the next week or whatever, to make sure that you are getting what it is that you need from us. 

Lisa Hatfield:

Okay. Thank you. And I appreciate that you talked about even celebrating the smaller, what seems to be smaller accomplishments. Like, sometimes if you can walk even five feet a day, you’re trying to walk again, even that, Yay, that’s exciting. Instead of thinking, well, before I used to be able to walk a half a mile or whatever. I think celebrating those small, those smaller steps are just as important. So thank you for bringing that up. It does give patients a sense of pride. You’re right.

Nicole Normandin Rueda, LMSW:

Absolutely.

Lisa Hatfield:

Well, you heard it here directly from the experts. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Cynthia Thomson from the University of Arizona discusses her approach to patient empowerment, how patient goals can vary, and her perspective on supporting patient lifestyle changes. 

 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?Dr. Akriti Jain: Why Is It Important for You to Empower Patients? Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Cynthia Thomson:

Cancer patients are amazing individuals. They really are committed to their health and well-being, and they’re also committed to the health and well-being of so many around them. So I empower patients by really helping them to think internally about what it is they want to accomplish in terms of lifestyle, what it is that really is important to them. Is it getting down on the floor and playing with their grandchild? Is it being able to have regular bowel movements every day? Is it to handle all these symptoms, maybe long-term fatigue or whatever, and really try to meet them where they are so that they really can achieve the goals that are important to them, not what’s important to me.

And I think that as I’ve worked with patients over decades, what I realize is that when you start where they are and support the patient along the way, they will make positive change. A lot of people will say, oh, no one will change their diet.

People aren’t ever going to eat healthy. Why do you worry about that? And I say, well you know, if that were the case, I think I would have quit doing this a long time ago. I would have realized that. But the opposite is true. People are looking for support, for information, for that opportunity to empower themselves to be healthier. They want to be healthier. It’s just that sometimes they need some help along the way to figure out what it is they need to achieve that goal.

Thoughts on Survivorship

Wellbeing

When the hotel alarm sounded on July 31, 2023, I woke up, put both feet on the floor, brushed my teeth, laced a pair of work boots, and caught an Uber to a factory in Potrero Hill of San Francisco.  On this work trip, with my team, we operated water treatment equipment that morning and then had lunch at a taco truck. After more work and a team dinner at a Japanese restaurant, another Uber whisked me back to the hotel in time to catch the impressive sunset over the Golden Gate Bridge.

As the sun reflected off San Francisco Bay I reflected on the past 27 years.  You see, July 31 marks my cancerversary, in other words the date that the doctor finally told me, “You no longer have cancer,” and that date marked 27 years since that discussion when I was a college student in the 90’s.

A handful of my friends know the date and sent well wishes, and on that date, old memories of my experience with Hodgkin’s Disease and prior cancerversaries have their way of returning to top of mind. I remember wanting cancer out of my body so badly and the desire to live and healthy and happy life thereafter; today we call this wellbeing.

I thought about those first steps after my doctor’s good news. Walking out of his office as a newly minted survivor felt like heading out on a journey without a map.  He had prescribed a regimen of scans, bloodwork, and follow ups which would gradually lighten as time progressed.

I dutifully followed, attended, and completed these appointments and every time sweated the results of each of them.  The new normal felt a lot more uncertain than it did before cancer. To live a healthy life as a survivor means taking on the hard stuff like waiting on results, but it also provides a level of comfort knowing the course of tests monitored my body very closely. Over time, the intervals between these exams lengthened from three months to six months. Then annually. Then never again after year 10.

Like many survivors, cancer influenced my health decisions, especially diet and exercise, to live a life with wellbeing.  Healthy habits have to underpin decisions. For me this meant getting into running and swimming. I remember running about six months after finishing treatments and could not make it 50 yards.

Sticking with good habits, stacking wins, will help healing and mental wellbeing. Whether you aim for mountain peaks or marathon finish lines, or you start a daily walking habit, movement and mobility will help the body bounce back; this worked for me.  I kept getting out there day-after-day, doing those 50-yard runs which eventually stretched further. Let your body guide you; listen; just move.

Over the years, having met so many other survivors, handling cold and flu season after cancer has some challenges. I remember the Fall after my treatments concluded, I came down with the sniffles and immediately thought cancer had returned.  Taking it a step further, I twisted my ankle on a jog about four months after finishing treatments and thought that my ankle now had cancer. It didn’t.  Relearning and listening to your body take time and those reactions are something I think all survivors experience.

One health dilemma I faced early on after the end of treatment happened in college.  The social scene at my (and many) colleges involved parties and bars. I enjoyed going to these, not so much for the alcohol but for the camaraderie. At the time (the 90’s), you could smoke in bars.  After standing in the smoke- filled college bars a few times and still worried about a relapse, I decided to change my approach. Instead of tolerating the environment, I would arrange meetups with friends earlier and would leave if it got smoky. Though I may have missed out on some late-night revelry, it meant prioritizing health first. Making this and other tradeoffs like it over the years have led to a healthier overall life without the worry of deprioritizing my health.

As the sun went down over the San Francisco Bay and the memories receded for another year, the second lifetime of chances left me with a warm appreciation of life and a gratitude for a second opportunity knowing that when the alarm sounds on the next ordinary day, August 1, I have the chance to keep going.

Good health to you.

Making Lifestyle Changes When Living With an MPN

Making Lifestyle Changes When Living With an MPN from Patient Empowerment Network on Vimeo.

 As a myelofibrosis (MF) and essential thrombocythemia (ET) patient, Julia Olff has experienced lifestyle changes in her MPN journey. Watch as she shares changes she made with her work life and eating habits and the impact on her well-being as an MPN patient.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Julia Olff:

I’ve definitely made many lifestyle changes since I’ve been diagnosed with ET and then myelofibrosis. The biggest change came when I needed to give up full-time work and began to work on a very part-time basis, so that’s been the most monumental change, and it really came about because of how unwell I was feeling, how much pain I was going through at the time, I also had a mini-stroke and became more involved in is hospitalized that I needed more treatment than I was seeing more…more specialists for a short period of time, and my husband and I recognized that to maintain my well-being, I needed to step off of the 50-hour week plus travel job that I was doing, so that was a really big change and that continues to influence my life, however, I’ve found a lot of positives in that I’m fortunate that I’ve been able to financially sustain my life while working part-time and find other aspects of my life that are fulfilling. For example, I volunteer a lot more. I’ve made changes in the way that I eat and the way that I sleep, so myelofibrosis has certainly caused a lot more fatigue over the years. And while when I was working full-time, I don’t think I was getting the amount of sleep that I really needed, and fatigue started to really weigh on me, and I remember driving and just feeling like, “Oh my God, I can’t do this,” so I make sure that I go to bed much earlier than I used to and try to wake up about the same time every day, and it’s also helped with some of the insomnia that I know people with myelofibrosis on the flip side, have with the fatigue. I’ve been hospitalized a few times for colitis, and there are all sorts of potential for bleeding with myelofibrosis, and we’re not sure that that was related, but I learned that I needed to change the way I was eating, and I can’t say that I did it immediately.

It took seeing a gastroenterologist, who evaluated all of my records and several more colonoscopies to get and the terrible, terrible pain of colitis to realize I needed to change the way I was eating, and I also had some weight gain with one of the medications that I was on…and so I enrolled in Weight Watchers, which I found to be incredibly helpful to help me lose some weight and did help me pump up the fruits and vegetables in my diet, especially when I learned you can eat lots of those…but less of other things. So those are some of the changes. And the last one I say is really learning to pace myself and to not overdo it, and that’s a longer learning process, I think, and figuring out that you don’t have the same kind of energy that you had pre-illness, where you can kind of push your day…you can do one more thing, one to one more place, add one more task to do is when you’re out, I’m much more of a planner, and I allow myself much more time to get things done, and I spread them out over several days, what I might have done in one day in the past.