Tag Archive for: self-care

Compassion Meditation

Compassion Meditation from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and tenderness towards others and bolstering feelings of connectedness as well as understanding and acceptance of others. Support your overall psychological and emotional well-being. Watch now.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards another.

Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering. In this practice we will be offering this compassion towards someone who is dear to ourselves. Bring to mind someone in your life who is suffering. Someone is going through challenging time. Who may be struggling with discomfort or distress? Picture them in your mind and allow yourself to feel a tender caring for their wellbeing. Allow yourself to hold them in your heart. Feeling their presence.

To your level of comfort, allow yourself to feel into their discomfort, their pain, their suffering. Doing so without overwhelming yourself with their pain, with their suffering. So, doing so to your level of comfort. Feeling your heart continuing to open to them. Wishing them well. Extending your tenderness and compassion towards them in their pain and wishing them well. Wishing them well. Repeating the following phrases or modify them to meet your heart’s sincere desire for their wellbeing: May you be held in compassion, May your pain and sorrow be eased, May your heart be at peace, May you be free from suffering.

Again, you modify any of those phrases that are suitable for your desire for their wellbeing. Repeating to yourself with a tender heart. Bringing this practice to a close. Releasing the phrases and noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Self-Compassion Meditation

Self-Compassion Meditation from Patient Empowerment Network on Vimeo.

Learn about cultivating love and tenderness towards yourself and bolstering feelings of self-worth, self-acceptance, and resilience. Support your overall psychological and emotional well-being.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards ourselves. Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering.

In this practice we will be targeting this compassion towards ourselves. Bring to mind a situation in your life that is difficult, a situation that is causing you stress. To your level of comfort allow yourself to feel the discomfort of the situation in your body. Now please don’t force this. Back off if it is too intense. You don’t want to force this. Saying silently to yourself as you feel into the discomfort: this is a moment of suffering, this is difficult, this is hard, this is painful. Whatever words you can use to acknowledge your distress. Acknowledging that in life there are difficult moments. That you are not alone. So, silently saying to yourself, acknowledging to yourself that suffering is a part of the human experience. We all go through struggles in our lives. Acknowledging your struggle, your discomfort as a human being having a human experience. If you like, you may place a tender hand over your heart. Asking yourself what kind words you need to soothe yourself in this moment of distress, of discomfort, of suffering. See if any of the following phrases work for you or find what works for you in your particular situation: May I give myself the compassion that I need, May I learn to accept myself as I am, May I forgive myself, May I be kind to myself, or May I be patient. Repeating your desired phrase or phrases to yourself with a tender heart.

Bringing this practice to a close. Noticing how you feel. So releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Loving Kindness Meditation (Part II)

Loving Kindness Meditation (Part II) from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and kindness towards others and enhancing your capacity for social connectedness. Watch now.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be planting seeds of loving kindness towards others in the garden of our minds. To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary.

Allow your eyes to softly close, if you feel comfortable doing so. Begin to feel into the weight of your body being supported by your seat. Taking in a deep breath in through the nostrils and exhale softly out the mouth with pursed lips. Do this several times. Releasing control of the breath and allow yourself to feel into the natural rhythm of your breath. The natural uncontrolled breath. Relaxing with each breath. Bring to mind the feeling of love to the best of your ability. Without forcing it. You may bring up a memory to support you in this process. The important thing here is to feel into the quality of love itself. Again, without forcing it.

Allowing this feeling of love to permeate your mind and body, your entire being. With a loving heart bring to mind someone who is dear to you. With a kind and loving heart begin to silently repeat the following phrases towards them. Feeling into to each repetition of the phrases to best of your ability without forcing it. May you be safe from harm, May you be well in mind and body, May you be happy, May you live with ease, May you be filled with lovingkindness. Let’s circle back and extend this kind heartedness towards all beings.  May all beings be safe from harm, May all beings be well in mind and body, May all beings be happy, May all beings live with ease, May all beings be filled with lovingkindness. Releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

3 Ways for Patients to Feel Refreshed Throughout the Day

People with cancer have to go through indescribable situations. On top of dealing with regular physical treatments, everything from a diagnosis to spending a lot of time in a hospital can take a toll on anyone’s mental health.

With that in mind, patients must be able to feel refreshed and well taken care of each day.

Self-care has become a bit of a buzzword in recent years, but it’s one of the best things you can do if you’re going through treatment for cancer, or even if you’ve been recently diagnosed. Taking care of yourself can help with your resiliency, improve your outlook, and even make you physically stronger to help you through different treatment solutions.

Let’s cover three ways you can feel refreshed throughout the day that you can take charge of, yourself. Whether you have a care partner, you’re currently in the hospital, or you’re trying to remain as independent as possible, these refreshing techniques will go a long way in improving your well-being.

1. Improving Your Sleep Habits

There’s no denying how important it is to get enough rest as a patient. During treatment, your body may need more sleep to help repair itself. Ideally, you’ll get anywhere from 7-9 hours each night.

If you’re struggling to get enough sleep, you could feel weaker throughout the day and less motivated to keep moving forward. If you’re staying in a hospital, consider finding ways to make your room and your bed more comfortable. Limit your visitors, add personal touches to your room, and embrace pain management so your discomfort isn’t keeping you awake.

At home, you can improve your sleep habits in a variety of ways, including:

  • Keeping your room at a cooler temperature
  • Going to sleep/waking up at the same time each day
  • Decluttering your sleep space
  • Avoiding electronics before bed

By improving your sleep hygiene and getting more rest, you’ll feel less fatigued each day, and you can wake up feeling refreshed and ready to tackle your treatment.

2. Keep Daily Routines

Routines are important for everyone. They can help you to feel more comfortable and confident, and they give you something to look forward to. When you’re going through cancer treatment, it’s not unusual to feel on edge and uncertain. Daily routines, especially those that focus on self-care, can go a long way in keeping you grounded.

If you want to establish a routine that can help both your body and mind to feel more refreshed, consider including some of the following each day:

  • Going for a walk each day
  • Doing physical activities you enjoy
  • Practicing good hygiene
  • Performing activities you enjoy
  • Going somewhere fun
  • Making time for laughter

Often, the littlest things can make the biggest difference when it comes to self-care. Even everyday actions like meditation, mindfulness, and journaling can go a long way in improving your mental state.

Try to include those specific habits in your routine to boost your mental health and improve your outlook. Things like gratitude journaling, for example, can be a great way to share your thoughts and feelings, while allowing you to look back on how far you’ve come and everything you have to be grateful for. On days when you might be feeling down, that can be a big help in making you feel more refreshed and happier.

3. Spend Some Time Outside

Multiple studies have shown the physical and mental health benefits of spending time in nature. As a person with cancer, those benefits are heightened even more. Not only does spending time outside boost your mood, but it can also increase your energy levels and even strengthen your immune system.

That’s exactly what you need when it comes to staying motivated and strong through treatment. There’s no question that most treatment options take a toll on your body. Spending time outside when you can will help you be both physically and mentally stronger, making each treatment just a little bit easier.

The best way to spend more time outdoors is by doing things you enjoy. While you shouldn’t push your body to do anything it can’t right now, find ways to make the most of nature while staying active. Consider hiking or long walks through your neighborhood, casual bike rides, or even just relaxing in a park underneath a shady tree. Just make sure you take care of yourself when you spend time outside.

Take breaks when needed, and be sure to stay hydrated. Dehydration can lead to fatigue, dizziness, and light-headedness. That’s dangerous for anyone, but it can be especially problematic when you’re someone with cancer. Sipping enough water throughout the day will keep you from feeling tired, and help you to stay refreshed, alert, and appreciative of the world around you.

There are so many other things you can do to feel refreshed throughout the day. Get creative and consider what makes you feel your best. These ideas can help you get started so you can get stronger, have a more positive mental outlook, and make living with this diagnosis easier than ever as you get the treatment you deserve.

MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care

MPN Patient Q&A: How Did You Avoid Obstacles to Receiving the Best Myeloproliferative Neoplasm Care from Patient Empowerment Network on Vimeo.

 In 1991, there were few myeloproliferative neoplasm (MPN) experts. Many MF, ET, and PV patients were misdiagnosed and often received dismissive care. MPN patient Nona Baker shares how her diagnosis with two MPNs – essential thrombocythemia (ET) and polycythemia vera (PV) changed her life.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Do I Best Communicate My Concerns Without Feeling Dismissed


Transcript:

Dr. Nicole Rochester:

Hello and welcome. I’m Dr. Nicole Rochester, I’m a physician, a health advocate, the CEO of your GPS Doc, and the host for today’s Patient Empowerment Network program. I’d like to start by thanking our partners, MPN Alliance Australia and MPN Voice for their support. Today we’ll be doing an MPN patient question and answer session, talking directly to a patient living with an MPN for over 30 years. The goal is to help learn how to avoid obstacles to the best MPN care. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce, please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on what the best options may be for your medical care. I am proud and honored to introduce Nona Baker. Nona was diagnosed in 1991 with essential thrombocythemia, also known as ET, and then in 2004 with polycythemia vera also known as PV. Nona is a staunch patient advocate and the co-chair of MPN Voice where she counsels MPN patients around the world on how to connect to the best care. We are so happy that you have tuned in to learn about Nona’s journey and tips that she has for you and your family as you face an MPN diagnosis as well as how to navigate your care and gain clarity on your path to empowerment. Thanks for joining us, Nona.

Nona Baker:

Thank you and thank you to Patient Empowerment Network for giving me this opportunity to share my experience and hope for other patients as they navigate their way through the MPN diagnosis and treatments.

Dr. Nicole Rochester:

Wonderful, so Nona in 1991, when you were first diagnosed, there were very few experts in MPN. Many MF, ET, and PV patients were misdiagnosed, and they often received dismissive care, because there were just so many unknowns at the time, and sadly, this was part of your journey and we’re going to learn a little bit more about that shortly. We received a number of questions about how you navigate treatment early in the course of your diagnosis, your initial diagnosis was actually more of an assumption, and I’d love for you to briefly speak more about that.

Nona Baker:

Thank you. It was a fairly scary time, I have to admit because so little was known about MPNs or MPDs in those days, myeloproliferative disorders, blood disorders, and my journey was very much a checkered journey, starting with being sent to an orthopedic surgeon, who I then had to go into physiotherapy for painful feet and insoles in my shoes. I was sent to a rheumatologist who took one look at my blood work and that’s when he said, I think you’ve got an alcohol problem. My husband actually was sitting beside me and he said to him, he said, I think you’ve got that wrong, she doesn’t really drink. And the doctor then turned around, they said, Well, maybe the machines have got it wrong, so that was quite a scary thing, it was…I knew there was something wrong, but I’d been what we call here around the hoses, and it wasn’t until I…the rheumatologist asked for a new set of blood work that he called me two days later that I’ve made an appointment for you to see a hematologist and his call was on a Saturday morning on Monday, two days later, and then I can tell you I was really scared.

Nona Baker:

Really, really scared. The other thing it did is I kind of didn’t trust what I was being told, the one thing I was told was there were only 12,000 known patients in the country, I’m not sure that gave me a great deal of confidence, but yeah, it wasn’t an easy start it was very scary.

Dr. Nicole Rochester:

Wow, I appreciate you sharing that, and I’m sure that many people with MPNs and other rare diagnoses can relate to that journey. Well, let’s take a look at your brief vignette that sheds a little more light on your unconventional path to care…let’s watch.

Wow, well, the good news is Nona, we have come a long way, but of course, we still have a ways to go. Would you agree with that?

Nona Baker:

I couldn’t agree with that more. I hear so many patients through my work with caring forums that we do from London, that go out around the world who go and don’t get the right information and get quite scared still by what’s going on, and I think things like we’re doing now today help empower people to know that they can actually claim ownership of their MPN and ask for and have a right… Well, certainly in this country to ask for a second opinion and get to the right care to meet their needs.

Dr. Nicole Rochester:

Absolutely, and you are speaking my language as a health advocate, I am always talking with people about the importance of using their voice, standing up for themselves and seeking information, and asking questions, so I love that you have opened our program with that. So with that, let’s go ahead and get our questions, the first question comes from Susan, and Susan asks, “After the initial shock of your diagnosis, were you worried about limited treatment options and specialists, and then what was your next step?”

Nona Baker:

Was I worried? Well, I was just generally anxious because it’s this thing of not being in control of one’s body and having to surrender that control to another person, so that’s the scary bit for me, and then I did something a little bit stupid in hindsight because it was the early days of the internet, man, I did Dr. Google, not a good plan, because particularly in the very early days, there was some really, really sort of dreadful prognosis is almost sort of go from right, you will…which, of course, here I am, 30 years on. And so, I think that I would be very cautious even now in using Dr. Google, I would go to safe sites where they are medically monitored because I think a little knowledge can be very dangerous.

Dr. Nicole Rochester:

That is so true. And I just want to highlight that because in medicine, we often kind of jokingly talk about Dr. Google, but it really is a phenomenon, and while there’s this balance of patients with rare diseases being able to find information and empower themselves, but then as you mentioned, known a lot of the information on the internet has not been vetted, some of it is not scientifically accurate, and it can literally have you pulling your hair out as you read these accounts and start to really create more worry as opposed to creating action stuff. So, I appreciate you sharing that.

Our next question is from Alice and Alice says, “I’ve noticed among women, minority groups and underserved communities, that there’s often a dismissive tone or atmosphere when you speak up and share your concerns,” and she wants to know, “Nona, do you feel that being a woman played a role in your initial diagnosis?” And she also like to understand how to communicate concerns with the care team when you feel that you’re being dismissed.

Nona Baker:

That’s an interesting question, I have to be honest and say I didn’t experience that, but I’m well aware of that. And it goes on, and it’s really disempowering to feel that, so I have huge empathy to hear that. I think if I had experienced it, which I obviously didn’t experience it, my key tip here would be when going for an appointment with a clinician, take a notebook and a pen and write down what you want to ask them, and write down their answers, and preferably if you can take somebody with you, because then you have that opportunity afterwards to digest what you’ve been told, and that in itself is empowering because you can then make further choices.

Dr. Nicole Rochester:

I love that, Nona. Also, advice that I always give to clients, and you’re right, having someone with you and writing things down is so important, especially in these situations where you’re getting a diagnosis, there’s a lot of uncertainty. We know that a lot of the information that’s shared in medical appointments goes in one ear and out of the other, particularly if we’re anxious or concerned or worried, so having that second person in the room is so incredibly important. I appreciate that advice. All right, our next question comes from Charles. He says, some patients living with two MPNs have said that they’re living with two cancers,” and he goes on to say that he’s been confused as to whether MPNs are cancers or blood disorders. Do you feel comfortable speaking to that and setting the record straight based on how you counsel other advocates in this space, he also mentions that his wife is living with ET and PV as well, and that sometimes the language can be very confusing.

Nona Baker:

I absolutely agree. And interestingly, we did a virtual forum for…at the weekend and one of the research projects, there has been only impacting on families, and it’s very interesting that the language can be very…again, disempowering the word cancer, I think the conventional word cancer is almost…it’s a deaf nail, but actually, when I challenged on the medication, I had the word cancer was used, I went to my primary GP physician, and I asked him,” nobody’s told me I’ve got cancer. What’s this?” Because at the time, it was a blood disorder and it said cancer, and he said,” Do you know what cancer means, Nona?” He said, “It means a proliferation of cells, but these are confined to the bone marrow.” But what happened for us as patients, as we started off, or certainly I did with a blood disorder, and then the World Health Organization, because of this perforation of cells re-classified that as a neoplasm, a neoplasm is just another word for cancer. So, it hasn’t changed since I was diagnosed, but the words have changed. And the scariest is in the word neoplasm suddenly here in the UK, it’s been an advantage, because we have access to much better drugs than we would have had if we’ve just been a disorder. I can’t speak for other health authorities or other countries, because each country is different, but I think it’s just simplifying it.  Simplifying the language. That’s empowering in itself.

Dr. Nicole Rochester:

I agree, and language is everything, and I think the key is what you said, that while there is a proliferation and while some may use the word cancer that it is confined, and I think that that provides a lot of clarity. Alright, we also have a question from Julie. Julie says, “I was given the run-around early on in my journey and wasted valuable time,” and she wants to know, what are some questions or actions to take at the outset when ruling out MPNs?”

Nona Baker:

That’s a difficult question because I think everybody is different and every health service is different. I think if you’re in an area where the clinicians don’t necessarily know too much about MPNs, that can be problematic. We’re a small country here and we have access to some really good hospitals that specialize in MPNs. I think, again, it’s going back with your piece of paper saying, can we rule out that I’ve got an MPN and I’ve read about MPNs, I have the symptoms, whether it’s fatigue or whether it’s itch for PV or whatever the symptoms are, and I’ve seen that that can be a symptom of an MPN. And again, take a piece of paper, and say can we rule that out? You know, I think that’s empowering.

Dr. Nicole Rochester:

I agree. Nona and I think when counseling patients who have had misdiagnosis or long road to accurate diagnoses, what you just said is key, and a lot of times it’s a matter of opening up the minds of your physicians and your healthcare team, and like you said, if they’re not familiar with MPNs, then they may go down a path of giving you a different diagnosis, but if you’ve done a little research or if you have some concerns, just saying, could it be this…I know that you think I have this condition, but based on what I’ve read, based on what I’ve learned, could it be an MPN? And a lot of times just that suggestion is enough to kind of shift the conversation, so I think that’s wonderful advice. Alright, our next question comes from Edna. And Edna says that in your in yet you stated that you were diagnosed at 41 and that you are a busy mom and that you were working, and she wants to know, “How did you share this diagnosis with your children and how did it impact your work in your career?”

Nona Baker:

It’s a very interesting question, and I think my children, because I had sort of my mom’s painful feet and I have packets of mushy peas that used to be put on my feet because they were painful because of the obviously thick blood, and my younger son has done a lot of fundraising for MPN Voice, and he talked about how as an 8-year-old, he’d grown up with me having these symptoms that I haven’t done much about, and I know I’ve always taken the view for me, and this is only for me, that I don’t let my MPN define who I am. You know, I think it’s part of my life. It isn’t my life, because my fear would be after that initial anxiety and fear that if I allowed it to take over my life, it would actually really impact my younger…my young children…in terms of my work, I only work part-time. You know, the other thing is, yes, I got a lot of fatigue, but I think what I’ve learned over the years is to put your hands up and say, you know, I’ve hit a wall whereas I just take five minutes.

Nona Baker:

Just take that time. Whereas sometimes it’s difficult when you’re a mom with young children, and I think now, people tend to explain it a bit to their young children, when mom’s tired, it’s not because it’s anything you’ve done it, because I remember patients describing it to have children is…it’s like a car, when the oil in the car gets too thick, the car slows down and sometimes the car needs to stop, and she equated her blood as the oil in the car that sometimes it just slows down and then has to stop gets a bit of refueling, I thought that was a good definition for young children.

Dr. Nicole Rochester:

I love that, I love that, and I’m a pediatrician by training, so I love putting things in clear terms for kids, and I think that’s really important to just make it simple for them. I also really like what you said, Nona about the self-care part, I think that can be really difficult sometimes for even women who may not have chronic diseases, but certainly for women and moms who have chronic diseases and feeling that, feeling guilty when they take time for themselves, even if it’s in the context of their illness, and so needing to rest and explaining that and normalizing that mom needs to take a nap, I think is incredible, and I love that your son is involved in the advocacy work that you do for MPN. All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to make was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, 30 years is pretty well since I’ve had a cigarette…

Dr. Nicole Rochester:

Well, kudos to you for giving up smoking that…that is a challenge. So that’s wonderful. All right, we have a question from Janet. Janet says, I have noticed that many MPN patients develop a second MPN over time, and she wants to know. She wants to know, “Were you surprised about your PV diagnosis over a decade after your first diagnosis, or is this something that you were perhaps prepared for by your medical team?”

Nona Baker:

Well, my second diagnosis came by chance because I had a problem with fibroids, which necessitated having a hysterectomy, which so, the natural venesection was taken away, and then it evolved to a… I don’t know whether that’s the reason, but then I was diagnosed with PV, which means that I have PV with high platelets now is I think the way in my hematologist describes it, but it’s certainly under control with the medication and with venesection from time to time. So, was I surprised? I don’t think after my journey, I don’t think anything surprised me really, I sort of…I think, again, I took ownership of it and just got on with it, really.

Dr. Nicole Rochester:

Excellent, thank you, Nona. As we prepare to close, is there one tip or one piece of advice that you would like to give to individuals with MPN?

Nona Baker:

Don’t be afraid to ask a question, because I think living with a fear of something is really not good for one’s general health because fear and anxiety can, I think, impact a physical illness if you’re living with a lot of fear in a lot of anxiety, and I know this is easy for me to say because I’ve had a relatively easy journey, and I’ve met patients who’ve had a really, really tough time and I know through Pan-voice, people that were diagnosed either shortly after me or some before who had a bone marrow transplant, you know, their life is obviously better, but my goodness…what they went through to get where they are now. But I think the whole thing that we’ve been talking about really is just find that voice, and even if it’s not with the clinician, share it with a friend, you don’t sit on fear, share it with a friend, have a body, have an ally, and one of the things we do at MPN Voice, which actually I think has helped enormously, is we have a buddy program there where you would be…you will be matched with somebody who has been diagnosed for at least two years that can buddy you along emotionally, because I don’t underestimate the emotional impact that that affects a lot of us.

Nona Baker:

And I think we need to have that voice to say, yes, it is a bit of a shock, but I’m not going to let it define me and wreck my life. If you can do that, I think life will be easier.

Dr. Nicole Rochester:

That is awesome. Don’t sit on fear. I’m going to carry that with me. Nona, I appreciate that. Well, that’s all the time that we have for questions. Nona, I want to thank you for taking this time to share your story with me and for everyone watching, and just to recap, we’ve learned that avoiding obstacles to the best MPN care means remembering that everyone’s journey is going to be different. We learned the importance of not allowing your disease to consume your life, and we’ve also learned the importance of using your voice because we are truly our own best advocates, it’s these actions that are key to staying on your path to empowerment. Thank you so much again for joining us, Nona, this has been amazing.

Nona Baker:

Thank you for giving me the time to speak to the patient community.

Dr. Nicole Rochester:

I’m Dr. Nicole Rochester, thank you again for joining this Patient Empowerment Network program. 

MPN Patient Q&A: How Did Your MPN Diagnosis Impact Your Life?

MPN Patient Q&A: How Did Your MPN Diagnosis Impact Your Life? from Patient Empowerment Network on Vimeo.

For a myeloproliferative neoplasm (MPN) patient, how can diagnosis impact your life? Watch as MPN patient Nona shares her experience as a working mom, and Dr. Nicole Rochester shares her perspective about self-care. 

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

See More from Best MPN Care No Matter Where You Live

Related Resources:


Transcript:

Dr. Nicole Rochester:

All right, our next question comes from Edna. And Edna says that in your…you stated that you were diagnosed at 41 and that you are a busy mom and that you were working, and she wants to know, “How did you share this diagnosis with your children, and how did it impact your work in your career?”

Nona Baker:

It’s a very interesting question, and I think my children, because I had sort of my mom’s painful feet, and I have packets of mushy peas that used to be put on my feet because they were painful because of the obviously thick blood, and my younger son has done a lot of fundraising for MPN Voice. And he talked about how as an 8-year-old, he’d grown up with me having these symptoms that I haven’t done much about, and I know I’ve always taken the view for me, and this is only for me, that I don’t let my MPN define who I am. You know, I think it’s part of my life. It isn’t my life, because my fear would be after that initial anxiety and fear that if I allowed it to take over my life, it would actually really impact my younger…my young children…in terms of my work, I only work part-time. You know, the other thing is, yes, I got a lot of fatigue, but I think what I’ve learned over the years is to put your hands up and say, “You know, I’ve hit a wall,” whereas I just take five minutes.

Nona Baker:

Just take that time. Whereas sometimes it’s difficult when you’re a mom with young children, and I think now, people tend to explain it a bit to their young children, when mom’s tired, it’s not because it’s anything you’ve done it, because I remember patients describing it to have children is…it’s like a car when the oil in the car gets too thick, the car slows down and sometimes the car needs to stop, and she equated her blood as the oil in the car that sometimes it just slows down and then has to stop gets a bit of refueling, I thought that was a good definition for young children.

Dr. Nicole Rochester:

I love that, I love that, and I’m a pediatrician by training, so I love putting things in clear terms for kids, and I think that’s really important to just make it simple for them. I also really like what you said, Nona about the self-care part, I think that can be really difficult sometimes for even women who may not have chronic diseases, but certainly for women and moms who have chronic diseases and feeling that feeling guilty when they take time for themselves, even if it’s in the context of their illness. And so, needing to rest and explaining that and normalizing that mom needs to take a nap, I think is incredible, and I love that your son is involved in the advocacy work that you do for MPNs.  

Practicing Self-Care in the Time of Coronavirus – How to Mind Your Mental Health and Well-Being During Covid-19

As the coronavirus outbreak continues its relentless spread, the impact of the pandemic is being felt across the globe. We are facing a critical time of fear and uncertainty individually and in our communities.

COVID-19 will affect us all to varying degrees –  physically, emotionally, socially and psychologically.  

You may notice an increase in some of the following feelings:

  • feeling stressed and anxious
  • fearing that normal aches and pains might be the virus
  • excessively checking for symptoms, in yourself, or others
  • becoming irritable more easily
  • feeling insecure or unsettled
  • having trouble sleeping
  • feeling helpless or a lack of control
  • having irrational thoughts

Both The Centers For Disease Control and Prevention (CDC)[1] and  The World Health Organisation (WHO)[2] have responded to the psycho-social impact of coronavirus by releasing  guidelines for those whose mental health is being negatively impacted.

In addition to these guidelines, many patient leaders are providing information and support to their communities through their social media channels.  To quote board certified coach, Nancy Seibel (@NancyLSeibel)  “those of us who have had cancer and other serious health challenges know something about how to self-calm and cope with uncertainty.  We know a lot about life being upended; uncertainty; living with but not in fear. It’s a hard-won gift, one that we can share with others.”  

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. Being proactive about how you handle this crisis can help to keep both your mind and body stronger. I hope you will find the following tips helpful and reassuring as you navigate your way through this time of global crisis. 

10 Ways To Take Care Of Your Mental Health And Wellbeing During Covid-19

1. Recognize  What You Can Control

While many of the things that surround this crisis are outside of your control, you can still focus on those things that are within your control. Hand washing,  staying at home,  limiting unnecessary travel and contact with others are steps we can all take to decrease our personal risk and protect others.   If you’re a cancer patient, currently undergoing treatment, you are in a high-risk group because cancer treatment compromises your immune system[3]. Follow the advice for High Risk Patients outlined on the Centers for Disease Control and Prevention (CDC) website.[4] 

That said, the reality of life as a cancer patient has probably prepared you for this moment better than most.  As breast cancer survivor, Diane Mapes, wrote in a recent Fred Hutch [5] article, “For the immunocompromised and those with disease, social distancing and uncertainty are a way of life.”

2. Focus On  The Facts

In a world of 24/7 rolling news and social media updates, it’s easy to get drawn into speculation and hype.   “It’s ok to be scared,” says breast cancer survivor, Karen Murray (@MurrayKaren),  “but don’t let fear take hold.” Rumors, myths and falsehoods can take on a life of their own if we let them, but as patient advocate, Nancy Stordahl[6] reminds us, “calmness is contagious too.”   

Keeping a realistic perspective of the situation based on facts is important at this time. Avoid media outlets that build hype or dwell on things that can’t be controlled. Stick to respected sources of information on the coronavirus and how to handle it. 

If you’re unsure  about something you’ve  read or heard, check it on the International Fact-Checking Network (IFCN) at the Poynter Institute[7].   If you’re concerned about whether you may have COVID-19,  the Cleveland Clinic[8] has a free screening tool to find out your risk level, based on your symptoms and travel. Additionally,  Intermountain’s COVID-19 Symptom Checker[9] is an easy to use, digital tool to help people get important information about COVID-19, assess their risk, and navigate to the most appropriate care setting.  “These are scary times, for sure,” points out Nancy, “but knowledge is power. Learn what you need to in order to keep you and your loved ones safe.” 

3. Limit Your Exposure To The News

The constant stream of social media updates and news reports about coronavirus could cause you to feel extremely stressed. If the constant drip feed of live news and social media is making you  anxious,  limit your exposure to news outlets.  I’m not suggesting you totally  ignore important news  updates – it’s essential to keep yourself informed. But you can reduce your anxiety by reducing the amount of time you expose yourself to the news.  Limit your media consumption to a certain amount of time each day. According to WHO, minimizing the amount of news you watch can be beneficial in helping people keep calm and positive.  The organization also suggests we “find opportunities to amplify positive and hopeful stories and positive images of local people who have experienced Covid-19.”

4. Practice Good Self-Care 

It’s important to pay attention to your self-care needs, especially during times of stress. Eating a healthy, balanced diet, avoiding excessive alcohol and stimulants, getting plenty of sleep, practising relaxation techniques, such as breathing exercises and meditation, and  taking daily exercise are key ways to stay physically and psychologically  healthy during stressful times.  Oncoplastic breast cancer and reconstructive surgeon,  Dr Tasha Gandamihardja (@DrTashaG) also suggests you “do little things that give you joy e.g. watch  a favorite program or read a favorite book.” 

Don’t put too much pressure on yourself at this time, advises metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle). “On days when I don’t have the energy to do much, I tell myself ‘just do one thing.’ If I feel like doing more, that’s great, but I never feel guilty about only being able to do one thing. So I choose the one thing that feels most important, whatever it is,” she says.

5. Keep Active

Build regular exercise into your day. There’s an abundance of scientific evidence showing how important fitness is for mental health: so during this very stressful time, it’s even more important.  The closure of gyms at this time doesn’t of course mean you can’t keep fit. Going for a walk or hike (if you  aren’t self-quarantined) watching a workout video online, practicing yoga or walking up and down stairs in your home are all ways to keep active and fit.   Cancer researcher, Emily Drake  (@EK_Drake), has seized on this time as an opportunity to learn to run. “I’ve never been a runner,” she explains, “ but with gyms and yoga studios closed – online just doesn’t work for me –  I need to get out.”

6. Eat To Beat Stress

Registered dietitian,  Cathy Leman[10] recommends you mix and match from these 29 foods each day to boost your body’s stress busting powers.

  • Vitamin C fruits and veggies
  • Green and red peppers, potatoes, oranges, grapefruit, strawberries, tomatoes, kiwi, cauliflower, cabbage, onions
  • Vitamin E foods
  • Dry roasted sunflower seeds, almonds, spinach, safflower oil, wheat germ, green leafy vegetables
  • Polyphenolic foods
  • Chocolate, tea, coffee
  • Complex carbohydrate foods
  • Barley, rye, oats, whole wheat
  • Omega 3 foods
  • Walnuts, ground flax seeds, fatty fish, chia seeds, canola oil

7.  Stick To A Daily Routine

Your daily routine may be affected by the coronavirus outbreak in different ways. But according to WHO, people should try to stick to their daily routines as much as possible.  “Ensure that you create a realistic and helpful daily routine and structure to your day, and stick to it, “ recommends psychotherapist, Karin Sieger.[11] “Have regular times for getting up and going to bed as well as meal times.”

For those of us who are working from home maintaining a routine can be challenging.  The temptation to sit in pajamas all day is real. Try to  stick to a working routine as much as possible – this includes structuring  your day with regular breaks (try working in 45-60 minute chunks of focused work followed by a short break),  minimizing distractions,  stopping for lunch, getting some fresh air, avoiding staying in the same position for prolonged periods  of time and keeping hydrated.  

8. Stay Connected

While “social distancing,” is hypothesized to flatten the curve of the contagion,[12] it’s not without costs. Research shows that social support is vital for our mental and physical health. According to WHO, individuals in isolation are one group that may feel the impact on their mental health the most.  To combat the loneliness of self-isolation, the organization advises people  to “stay connected and maintain your social networks”. 

Maintaining strong connections will help you to feel supported, but since face-to-face in-person support is limited we need to find other ways to connect and receive support. Patient advocate,  Terri Coutee (@6state)  recommends  utilizing online platforms. “Call/text family members often and talk about fun times together,” she suggests.  Social media and social messaging apps are  a boon at this time. Patient advocate, Siobhan Feeney (@BreastDense) says she is “so grateful for my social media friends in many countries as we share the burden of this pandemic.”  In addition,  individuals who are self-isolating can also use QuarantineChat,[13] a new app that aims to connect people who are quarantined and may not have close family or friends to call. [14]

9.  Find Creative Distractions

Doing something creative can help improve your mood when you feel anxious or low. Creative activities can also increase your confidence and make you feel happier. This is because creative hobbies often completely absorb your attention, helping you to temporarily forget negative thoughts.  Carolyn Thomas (@heartsisters) shares this lovely idea for creating together with friends: “my paper-crafting friends and I are having our first ever virtual card-making workshop together via the miracle of video chat…. We each have a number of springtime birthdays coming up among our families and friends, so we’ll be creating springtime-theme birthday cards today.”

Looking for some more creative ideas? From baking to blogging, journaling to jigsaws, Sara Liyanage, author of Ticking Off Breast Cancer, has compiled a bumper list of distractions[15] for you to try.  Also check out PEN’s own Activity Guide here.   Experiment until you find something that suits you.

10. Practice Kindness and Self-Compassion

Nancy Seibel recommends shifting your focus to giving and receiving kindness.  “You’ll be worried, anxious or fearful at times. That’s a natural response to what’s happening, “ she says. “Accept those feelings compassionately. See if there’s anything to learn from them. Then shift your attention. Focus on what you’re grateful for. Walk. Ride your bike. Write. Dance.” She recommends starting with your own self-care, before expanding it out to others. “Calm and center yourself with meditation, deep breathing, knitting – whatever soothes you. Then support others. Spread a contagion of joy, love and kindness! That’s what will get us through this turbulent time.”

This Too Shall Pass

One of the things that is helping me right now is to tell myself that this reality is not forever. Patient advocate, Liza Bernstein[16] reminds us that while  “for now, #COVID19 feels like the entire world’s permanent reality… [but] within that, there are moments, nuances, and joy. There is hope, a delicious piece of chocolate, or a beautiful flower, or a hilarious meme, of if you’re lucky, a dog to play with, a loved one to hug (if you’re in the same home and healthy!)… or whatever floats your boat.”

The spread of coronavirus is a new and challenging event. Most people’s lives will change in some way over a period of days, weeks or months. But in time, it will pass. My wish for you today, especially if you are feeling anxious, alone, or fearful, is that you can find something to hold onto in this moment. To quote psychologist and breast cancer and SCAD survivor, Elizabeth McKenzie[17], “In this moment, as I write this, I have all that I need. I have my breath. I have my mind. I have my family. I have friends. I have shelter. I have clean water and good food. I have the nearby woods in which to walk. Not all moments are like this but right now it is.”


Additional Resources

At Home Self-Care Tips for Parents During a Pandemic

References

[1] CDC. Coronavirus Disease 2019

[2] WHO. Mental Health and Psychosocial Considerations During

COVID-19 Outbreak  In January 2020, The WHO declared the outbreak of a new coronavirus disease to be a Public Health Emergency of International Concern.

[3] Fred Hutch. Coronavirus: what cancer patients need to know

[4] Centers for Disease Control and Prevention. Are You at Higher Risk for Severe Illness?

[5] Fred Hutch. Lessons from cancer patients in the time of coronavirus

[6] Nancy’s Point. What Can Cancer Patients (or anyone) Do to Protect Themselves & Others During the COVID-19 Pandemic?

[7] The #CoronaVirusFacts / #DatosCoronaVirus Alliance unites more than 100 fact-checkers around the world in publishing, sharing and translating facts surrounding the novel coronavirus https://www.poynter.org/coronavirusfactsalliance.

[8] Cleveland Clinic. Find Out Your COVID-19 Risk

[9] Intermountain Healthcare. COVID-19 Symptom Checker.

[10]Dam.Mad. About  Breast Cancer. Eat These 29 Foods to Help You Manage Stress

[11] Karin Sieger. Coping With Difficult Times.

[12] Live Science. Coronavirus: What is ‘flattening the curve,’ and will it work?

[13] https://quarantinechat.com

[14] Quarantine is the separation and restriction of movement of people who have potentially been exposed to a contagious disease to ascertain if they become unwell, so reducing the risk of them infecting others. This differs from isolation, which is the separation of people who have been diagnosed with a contagious disease from people who are not sick; however, the two terms are often used interchangeably, especially in communication with the public. The psychological impact of quarantine and how to reduce it: rapid review of the evidence

[15] Ticking Off Breast Cancer. Ways To Distract Yourself During Self-Isolation.

[16] It’s The Bunk. It’s #Covid19 – Start Where You Are

[17] My Eyes Are Up Here. All I Need

Self-Care During Illness: 
Tips for Cancer Survivors

Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.

Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.

Keep reading for some great tips on how to practice self-care as a cancer survivor.

Take Your Medication as Directed

Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.

If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.

If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.

Eat Well

Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.

Make Your Needs a Priority

Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.

Try Something New

As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.

Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.

The Power Of Fitness And Weight Loss As Self Care

A recent report by the NPR charts the rise of the $10 billion self care industry.  Far from dismissing it as flippant or purely cosmetic, it seems that there is a power to self-care which is only just emerging.  The January Empowered #patientchat focused on the importance of self-care for both patients and care partners, and many contributors highlighted health and fitness as valuable opportunities for self-care and empowerment.  So how can you empower yourself to make great health and fitness choices? And how will they benefit you?

Losing pounds, gaining results

Studies have shown that losing 5-10% of your body weight can make a real difference to your physical health, helping to protect from conditions such as heart disease, arthritis and diabetes.  It can also be a real boost to your self-esteem to start seeing results on the scales or in your jeans. Finding the motivation to stick to a plan, and seeing it pay off as you hit milestones and goals is hugely rewarding and empowering.  Fitness is a journey that no-one else can take for you; you can have cheerleaders and a full support crew, but it’s you doing the work, which is why it feels so great when you achieve. Not seeing the results you were hoping for by now? It may be that you’re making some of the common weight loss mistakes that can prevent effective and lasting weight loss. By reading up and avoiding the pitfalls, you can get on with building a better body.

Boosting your body

Nourishing your body from within with good healthy food is one of the most meaningful forms of self-care. The USDA offers sound advice on creating a varied, nutritious plate to ensure that your body is boosted in the nutrients it needs. Drinking plenty of water is also always a powerful tool, enabling your body to replenish and restore itself. Put simply, taking time to feed yourself with a rainbow of fruit and vegetables, lean proteins and fiber, along with all the other food groups in moderation, will strengthen your body and boost your immune system.  There’s also evidence that the colors and textures will help your mental health too; so why wait?

There’s no doubt that obesity is bad for the body, and it already affects over a third of US adults. What’s becoming clearer though, is that taking a positive approach to weight loss, through regular exercise and healthy eating, not only improves physical health but greatly boosts mental health and well-being. Empower yourself by embracing your health and fitness, and you may just find it to be the greatest expression of self-care possible.


Photo by Martine Jacobsen on Unsplash

Empowered #patientchat – 2018 Self-Care Goals

Youre Invited! Join us for our first bi-weekly Empowered #patientchat of the year.

We know it’s difficult to make time for yourself, especially when you or a loved one is a patient. But self-care is so important as a way of managing your mental wellbeing. Whether you call them resolutions, goals, or intentions, let’s chat about how we can make self-care and wellness a priority in our daily, weekly, and monthly plans in 2018.

Guiding our discussion will be the following topic questions:

T1: “Self-care isn’t always bath bombs and $20 face masks…” What does self-care mean for you? #patientchat

T2: For 2018, what would you like to start doing/stop doing? How do self-care and wellness fit into your overall plans? #patientchat

T3: Think about a self-care goal(s) you reached in 2017. What helped you succeed? Tips? What can keep you from attaining your goals? #patientchat

T4: Why is it important for care partners to prioritize self-care? #patientchat

T5: How can you sustain your self-care routine when days aren’t routine? Example: Appointment days for you or loved ones? #patientchat

T6: How can we make self-care and wellness part of our daily, weekly and monthly plans? #patientchat

We hope to see you Friday, January 12th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!

I'll be at the Empowered #patientchat on Fri 1/12 at 10amPT | 1pmET. Join me! Click To Tweet

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