Tag Archive for: coping

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

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Navigating Anxiety and Stress Following Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

What are some ways for follicular lymphoma patients to cope with emotions after treatment? Cancer patient Lisa Hatfied shares coping methods and health lifestyle advice for dealing with stress and anxiety.

See More from START HERE Follicular Lymphoma

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 What To Do When Newly Diagnosed With Follicular Lymphoma

Transcript:

Lisa Hatfield:

After you are done with your follicular lymphoma treatment (including stopping any maintenance therapy), you may feel anxiety or stress and ask yourself “Well now what?” This range of emotions is normal. One woman  shared, “After a year in remission, dealing with the aftermath of follicular lymphoma has been tough. Initially, the news of remission brought euphoria and excitement that lasted the whole day. However, soon after, I found myself feeling numb—and then grappling with guilt for feeling that way.

You may feel similar to this woman or you may feel like the other shoe is about to drop (i.e. concerned about recurrence in the future). Here are some tips to help manage this stress and anxiety: 

  • Manage your expectations. Give yourself a break and set realistic expectations. After you stop maintenance therapy, you may not feel 100% back to normal right away so give yourself grace 
  • Research has shown that fear of recurrence can be reduced when your healthcare team is able to give people statistics about curability or remission length. Ask your healthcare team if you find comfort in statistics. 
  • Talk to a counselor and seek antidepressant or anti-anxiety medications
  • Exercise and relaxation techniques like meditation and mindfulness may also help
  • Continue healthy lifestyle factors, just like you did during treatment, including good diet/nutrition, getting enough sleep, etc. 
  • Join a support group designed to help people who have completed treatment. It can be helpful to hear what other people do to manage their anxiety/stress and know you are not alone in feeling this way. 

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360 Myeloma Care | How Can a Social Worker Help?

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360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.

When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

See More From Thrive CAR T-Cell Therapy

Related Resources:

How Can a Social Worker Help CAR T-Cell Therapy Care Partners

How Can A Social Worker Help CAR T-Cell Therapy Care Partners?

 The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join

 How to Access Myeloma Financial Resources

How to Access Myeloma Financial Resources

Transcript:

Yu Mee Song:

My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.  

Katherine Banwell:

Excellent.  

Yu Mee Song:

Thank you for having me.  

Katherine Banwell:

Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?  

Yu Mee Song:

First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.  

And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs. 

Katherine Banwell:

Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having? 

Yu Mee Song:

That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.  

Katherine Banwell:

If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them? 

Yu Mee Song:

That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.  

If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.  

So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day. 

And that’s so helpful to know that.  

There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.  

Katherine Banwell:

That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where? 

Yu Mee Song:

I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.  

It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.   

What Are Your Go-to Coping Mechanisms While Living With Cancer?

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What Are Your Go-to Coping Mechanisms While Living With Cancer? from Patient Empowerment Network on Vimeo.

Lisa and Thomas, living with Myeloma along with Donna and Diana, living with NHL share their unconventional ways they’ve found to cope with cancer. They share times when humor has helped them through dark moments and how exercise keeps them in high spirits.

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:  

Hi, my name is Lisa Hatfield, I’m the myeloma Empowerment Lead for Patient Empowerment Network. We are going to have a program today., I’m super excited about with some panelists who are going to a little bit lighter program, going to talk about humor in cancer and maybe laughter, happiness and cancer. Quick disclaimer that this program is solely based off of our patient experiences, and it is not intended to be a substitute for your professional medical advice. Please talk with your medical team if you have any questions about your medical condition. So we’re going to start right off with our panelists introducing themselves, and we have actually two different types of cancer that are being represented today, we have protected blood cancer, multiple myeloma, and diffuse… I remember how to say it, diffused large B-cell lymphoma. I think it’s a type of non-Hodgkins lymphoma, is that correct? Okay, yes. So, I’m one of the Multiple Myeloma patients I’ve been… I’ve had multiple myeloma for four years now, doing relatively well, my bio markers in my blood are stable, I’m not really in remission because my bone marrow biopsy has come back positive, but doing well in general. Mentally, I’m doing great. 

Feel pretty good about things. And that’s why we’re here today. So, we’re going to just go around the room, the Zoom room, and I’ll just start from my left to right around. So, with Diane, you can just give your name, type of cancer, any treatment you’ve had, where you’re at now, and anything else you want to share about yourself? 

Diana:  

Sure, Diana Bosse, and I am one of those diffused large B cell lymphoma survivors. I was diagnosed in April of 2019, so I’m about getting close to four years out, which is promising. Doing great today. And just really happy to be here. I’m the author of a book called The Perks of Having Cancer, which I wrote during my treatment, so it was what kind of motivated me and kept me going.

Lisa Hatfield:  

Thanks, Diana and going around my room here… Thomas, your next in line. 

Thomas:

Hi, I’m Tomas Goode, and I am a multiple myeloma survivor. This year, 2023 makes 18 years for me. I was diagnosed at a very young age of 34 years old, and I am now living with this disease, and I want to show everybody how to… How I utilize my time to live with this disease. 

Lisa Hatfield:

Alright, thanks, Thomas. Donna. 

Donna:

Hi, I’m Donna Landsman, I’m also a diffused large b-cell survivor. I was diagnosed in 2013. I was re-diagnosed two years ago with follicular lymphoma, which is indolent and slow-growing, and honestly, if I never have symptoms, I never have to be treated, so fingers crossed. 

Lisa Hatfield:

Alright, we’re crossing them. Thanks, Donna. So, I was going to just mention, you guys can jump in a time… How all four of us met, we came together just a few months ago, I feel like we know each other super well now because we’ve stayed in contact, but in case anybody is wondering, we were brought together by the patient advocacy segment of a biotech company on the east coast near Boston. We did not know each other prior to that, and we worked on helping this particular organization understand the patient perspective, we also did a couple of activities where we all tried to support other patients who are… Who are may be located in hope lodges or receiving treatment and staying in hope lodges around the country. So over the course of two or three days, the four of us who were complete strangers coming together, had the best time together, at least that’s my perspective, I might be projecting that on to you thinking I had the best time, but we had a great time together, and I’ve always tried to maintain a decent attitude, a pretty positive attitude about my cancer and my diagnosis after having met the three of you and working together, it really reinforced how important positivity and having a sense of humor, even if it’s about our cancer, which we’ll talk about a little bit later.  

So, we’re going to be talking about humor and cancer, and that incorporates anything about positivity and cancer humor or laughter, happiness, they’re all different, but I think pretty important in dealing or coping with our cancer diagnosis. So just wondering if any of you have anything to share about how prior to diagnosis or just in life in general. So, anybody watching this has some thoughts or tips on what do you do to create more humor in your life or to acknowledge more humor, to be more humorous or have more positive in your life? Donna, any suggestions, any thoughts on how you… 

Donna:

Well, you know, you kind of brushed upon a subject a little bit it before, and so I really do need humor in my life, I need comedy, and so for me, I try to watch whatever I can… Like you had mentioned, America’s Funniest videos, I watch comedians. You know our own personal experiences, like with Sebastian Maniscalo, I listen to a lot because I relate to that type of humor, and so that actually took some of the edge off of a lot of my uneasiness or when things were like a really dark, deep day for me, I really look for humor and I need it, and you know like you said, we can find humor of going through our cancer experiences, and some of it is relatable and some of it isn’t. For some of it we can say Ah ha, yeah, I’ve been there. And so, it’s a way to touch upon something that another person can relate to, so I thought that was… I really liked the subject because I think we need more humor, and I think it needs to be lighter, so… It’s great. Yeah, really. 

Lisa Hatfield:

And Thomas, I know both you and Donna mentioned, it doesn’t really have to be humor, but even how you cope with some of the things that you talked about, working out, exercise, so you can talk about humor or exercise or both, how you used those for coping mechanisms. 

Thomas:

You know with humor, I utilize my groups, this group that I’m in, my group of guys that I ride my bikes with, the group of guys that I exercise with, we all keep each other laughing so much just by sending us stupid stuff we find on the internet, TikTok, whatever, and that really enlightens our day. But another coping mechanism is me in the gym. All throughout my myeloma journey I’ve utilized that as a way of outlet… A way of de-stressing you realizing that as an opportunity to take out everything that I have on the exercise equipment versus me sitting in and thinking about it, so I like to cope with anything that I’m dealing with in the gym like that. 

 Lisa Hatfield:

That’s awesome. And Thomas inspires all of us by sending pictures out so we can see him in the gym, makes us get up off the couch or you guys probably are good about the other two ladies, I’ll be like, Oh, I better get moving cause Thomas just sent a picture, I’m better going to do something. So yeah, Donna go ahead. 

 Donna:

I wanted to say that actually, I tell my children, I tell everybody that exercise is my drug of choice, and I exercise all through my chemo treatments, whether I did five minutes, whether I did seven minutes, my gym was open in my building 24 hours and I just needed to get down there to do something, and it was really a way to release… We really weren’t able to drink alcohol and not that I drink a lot anyway, but I needed to do something and the physical outlet was the best for me, really. And so, I’m with Thomas. Thomas and I worked out the day of our last day in the Boston area. 

Diana:

We saw the pictures. 

Thomas:

Yes, we took a one-handed selfie. 

Diana:

I agree, I think exercise is a great release, and for me, if you… I went to yoga classes when I was going through my treatment, and if you saw me trying to do some of the yoga poses, that in itself was very humorous. I get tangled up. 

Lisa Hatfield:

I’m like you guys, I like to work out. I don’t work out as much as you do, but I go for walks and whatnot, and that definitely helps me cope, and also just being around my friends. Thomas mentioned being in groups, but being around other people… I have a friend who is Greek, and she embodies that Greek passion and exuberance, and she is the side of me that… Things that are going through my head, she says them out loud, I love being around her, and I’m just going to mention this really quick, cause it has to do with my friend who’s that with my friend who is Greek, but Diana is an author, like she mentioned, she wrote, I have this book as my prop here, The Perks of Having Cancer, and no, Diana has not paid me or bribed me, or even given me chocolate for talking about her book, I just talk about books, that I like to read, but there’s one excerpt in there about watching  reality TV, and it references Dr. Pimple Popper. Well, what I did actually right after I was diagnosed for fun, I think was I never watched reality TV, especially the really gross things, but I found it the grossness of that kind of funny. 

So, I talked, I asked my best friend one night. Let’s have a gross TV night and watch something, not Dr. Pimple Popper, but just totally disgusting called The Toe Bro. And I might add, if I’m allowed to say that we do happen to have a retired podiatrist, so talking right now, Donna. So, where she might make money off of looking at feet… I’m disgusted by feet, so we watched The Toe Bro and my friend who has no problem making she’s full of one liners, she’s ridiculously funny watching The Toe Bro. She was making comments, I was laughing my head off, watching reality TV, which is so out of character for me anyway, that’s how I found humor and laughter, I guess before and during my treatment with my myeloma… Go ahead Donna. 

Donna:

In my defense as a retired podiatrist, I just want to say that it’s better than some of other aspects of our anatomy, so toes were fine for me 

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

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Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN Related Anxiety

Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.

Grief, Loss, and the Cancer Experience

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“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.