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How Does COVID-19 Create Sleep Issues for Cancer Patients?

Are you having sleep problems during the COVID-19 pandemic? A recent Swiss study showed that people’s sleeping hours are more regular during the global crisis, but self-reported sleep quality has decreased, according to Science Daily. Besides that, some groups like cancer patients are more likely to experience sleep deprivation during such challenging times.

There are several factors that might affect the sleep quality of people diagnosed with cancer. They include the diagnosis, cancer treatments, medical bills, and an uncertain future. Stress and anxiety due to coronavirus disease can also cause a disruption of everyday schedules. Sleep disorders themselves can worsen cancer symptoms, which creates a vicious cycle.

Cancer Survivors and Sleep Disorders

Getting a good night’s sleep can already be tough for cancer patients. Studies show that over three-quarters of people with severe disease have sleeping problems, according to the Cancer Treatment Centers of America.

The good news is today’s scientists and physicians have a better understanding than in the past about how sleep works and how to improve sleep quality.

Sleep provides many health benefits for overall physical, mental, and emotional health. This is especially true for people battling severe diseases like cancer. For example, it can boost your body’s immune system, which makes it more effective at fighting off cancer cells.

On the other hand, lack of sleep can have the opposite effect. This can weaken the immune system and slow down recovery from sickness or injury. Serious sleeping disorders can also create an imbalance of the cell-impacting hormones cortisol (stress hormone), and melatonin (sleep hormone).

Sleep: Its Influence on People Living with Cancer (video)

Other Effects

Besides affecting cancer cells and tumors, poor sleep can also have other negative effects related to:

  • Obesity
  • Diabetes
  • Heart disease
  • Heart attack/stroke
  • Mental health
  • Sleep

One theory is that melatonin might be the root cause that affects these health conditions and episodes. However, more research is needed. The body normally produces more melatonin at night as it gets dark outdoors and the human body winds down for rest and repair.

COVID-19 and Sleep Problems

Fun Fact: The acronym COVID-19 stands for corona (CO), virus (VI), disease (D), and 2019 (19). There are various possible factors related to the global epidemic that might affect people’s sleep, even if they haven’t tested positive for respiratory disease:

Anxiety, Stress, and Depression

The ongoing COVID-19 outbreak has become a global financial crisis that could cost the United States alone $16 trillion, according to the Los Angeles Times.

Quarantines, layoffs/furloughs, and school closures have caused stressful situations for people, and it’s even worse for those with severe diseases like cancer.

Even indirect factors like COVID updates have created more stress and duress. This is why it’s important to avoid reading or watching daily news after 7 PM or so. Negative news can affect your psyche and make it tougher to doze off at bedtime. A better option is good news.

Disrupted Daily Doings

The “new normal” during the ongoing pandemic might affect the quality of sleep. More stay-at-home time can cause wholesale schedules in daily schedules. That, in turn, can result in a sedentary lifestyle of sitting down and fewer gym workouts. This can negatively affect sleep unlike the option to make the right selection of mattress.

Blue Light

Studies show that blue light from sources like computer monitors, mobile devices, and fluorescent light bulbs can disrupt people’s sleep patterns.

Besides that factor, people might have more screen time during quarantines and lockdowns as they use their PCs/Macs, tablets, and smartphones to get COVID updates

and interact with friends and family. This can increase the risk of tossing and turning due to insomnia.

COVID-19, Sleep, and Cancer: It’s Complicated

As noted, several factors can negatively affect the sleep quality of cancer patients. When you add factors like a worldwide pandemic to the mix, this situation becomes ultra-complex.

Coronavirus and Sleep

The ongoing COVID-19 crisis isn’t just about the contagious virus itself, which makes it a whole lot more serious than a sleepless night when counting sheep and a warm glass of milk doesn’t seem to work.

Here’s the problem. Your ability to fall asleep and stay asleep during a pandemic probably isn’t related to the respiratory condition itself. Instead, it’s the effects of everyday life that have been turned upside-down because of the virus.

The effects of a global pandemic can include different factors related to work, school, and home. People can also experience emotional problems like worry, anxiety, and depression. Besides affecting your sleep schedule, it can even negatively impact your general health. So it’s a double-whammy.

COVID-19: The Importance of Sleep (video)

Stress and Sleep

While taking steps like picking a comfortable mattress can help you sleep like a baby, stress can have the opposite effect. In fact, insomnia can affect your ability to fall asleep and stay asleep, according to the Cleveland Clinic.

Stress triggered by stress hormones like cortisol can affect various biological processes, including sleep. If you’ve already received a cancer diagnosis, then a viral pandemic can make the situation even worse.

Pandemics and Sleep

The current pandemic can increase stressors and create an uncertain future due to the disruption of everyday life. This is due to extraordinary changes to daily life, including social distancing, virtual work, and home-schooling.

More Sleep for Cancer Patients During COVID Quarantines

Cancer survivors can take some basic steps to get more shut-eye during the current quarantines/lockdowns:

Sleep-friendly Environment

Dark, quiet, and cool rooms can all help to help cancer patients get a good night’s sleep during a global pandemic. It’s important to create a sleep-inducing environment that can help you fall asleep, and then cycle through the five sleep stages multiple times. If you dream you’re probably in ‘deep sleep.”

There are various steps you can take:

  • Minimize artificial lighting with options like night lights and dimmer switches
  • Clear your mind of everything and focus on falling asleep
  • End all daily news consumption before 7 PM
  • Use heavy curtains and blinds to block outside light
  • Avoid heavy meals, exercise, and caffeine/alcohol close to bedtime
  • Ditch all thoughts about the current COVID-19 pandemic
  • Use aromatherapy through sprays, diffusers, and massages at bedtime
  • Delay dealing with personal problems until the next day
  • Eliminate loud sounds and use sleep aids like noise machines
  • Do meditation, yoga, or light exercise to prepare for bedtime
  • Use self-mantras to help you doze off when your mind races
  • Lower the thermostat to about 65°F (18°C) to promote quality sleep

Conclusion

Dealing with the year-long COVID-19 pandemic can be tough enough. The predicament becomes even tougher for cancer patients who must also handle disease-related issues like cancer diagnosis, symptoms, and treatments. That’s why it’s so important for survivors to take steps to stay calm, boost their immune system, and get a good night’s sleep. Sleeping well can help you fight the coronavirus while you battle cancer.

Helpful Oral Care Tips For Cancer Patients

Around 80% of individuals undergoing myeloablative chemotherapy experience oral complications and conditions, according to professor in cancer and palliative care, Munikumar Ramasamy Venkatasalu. It is crucial for individuals with cancer and their caretakers to know how to sufficiently address conditions that may occur in all areas of health. In this case, it helps to know several helpful oral care tips to help patients maintain proper oral health.

Understand Common Oral Complications

Cancer patients often have a high risk of developing oral complications, as radiation therapy can cause direct damage and break down to salivary glands and oral tissue, according to the National Cancer Institute. Understanding some of the more common oral complications like fibrosis, tooth decay, and periodontitis can help you to spot any early symptoms so they can be nipped in the bud before they become exacerbated with time. Requesting a list of oral complications and their common symptoms from a dentist can help keep information fresh and easily accessible.

Schedule Veneer Cleaning Every Six Months

Veneers are often seen as a good option for cancer patients who have struggled with oral complications. However, just because a person has veneers, it does not mean that they are immune to cavities and gum disease. While veneers — especially porcelain ones — can last an average of 15 to 20 years, proper care and regular cleaning sessions can ensure they last longer. So for those with veneers, scheduling a cleaning session every six months is a must. A cleaning appointment also gives a dental professional an opportunity to give their client an update on the current state of their oral health.

Eat Bone-Building Foods

A good way to keep up a patient’s oral health and stave off any chemotherapy side effects is by ingesting more bone-building foods, according to Cancer.net. Eating more foods that increase the presence of Vitamin D and calcium help keep jaws and teeth strong. Some of the foods that help make bones strong are dairy products and cruciferous vegetables. Other good bone-building foods are nuts like almonds and pecans, as they are a good source of magnesium and phosphorus. Seeds like chia, pumpkin and flaxseed are also good sources of calcium, fiber and omega-3 fatty acids. So not only will a patient’s oral health improve, but other aspects of their health will be boosted as well.

Maintain Brushing And Flossing Every Day

Naturally, the best way to keep oral health up is by relying on good habits like brushing your teeth at least twice a day and flossing regularly. It is recommended that a patient’s toothbrush be soaked in warm water to help soften any bristles to avoid bruising gums that have become sensitive because of radiation therapy. Ask a dentist for special instructions on how to brush and floss to lower the risk of bleeding gums and infection.

Oral health is crucial to general health and overall quality of life. Therefore, cancer patients and their caregivers must be proactive in ensuring that good habits are maintained in order to keep away negative conditions. It is also recommended to keep in touch with the patient’s primary physician and dentist so that they may be able to catch any complications before they fully set in.

The Best of 2020

As 2021 begins, we would like to take a moment to highlight a few of our most popular posts from 2020 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2020 one for the books, even during a trying year. Your efforts to Patient Empowerment Network are greatly appreciated!

January

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Stage IIB Hodgkin Lymphoma patient, Lindsay, shares her cancer journey from searching for a diagnosis to adjusting to her new mantle of ‘cancer survivor’.

10 Body Signals Warning Health Problems

We should always be aware of what our body is trying to tell us. Here are ten ways our body is signaling that we should be more concerned with our health.


February

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer? Here are some tips and advice to be the most helpful to cancer patients.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

Patients need to be aware of the side effects of immunotherapy and vigilant in addressing them with their doctor as they can signal complications.


March

Practicing Self Care In The Time of Coronavirus – How To Mind Your Mental Health And Well-Being During Covid-19

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. In this blog, you will find tips to help you navigate your way through this time of global crisis.

Health Fraud Scam – Be Aware and Careful

This blog explains what healthcare fraud is and provides tips to help you avoid falling victim to these scams.


April

Cutting Through the Panic in a Pandemic

A list of trusted sources to help you cut through all the information that is being share online about the coronavirus pandemic.

Fact or Fiction: Finding Scientific Publications Infographic

This infographic from our PEN Powered Activity Guide shares her tips for finding and understanding scientific publications.


May

Cancer, COVID, and Change

Cissy White gets used to her new normal dealing with having ovarian cancer during a pandemic, and the challenges and benefits that presents.

Diversity in Clinical Trials Benefits Everyone

It is critical that minority groups are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone.


June

Social Determinants of Hope

Casey Quinlan explains that everyone’s social determinants of health have been impacted by COVID19, but she is seeing strong signals of hope.

Music as Medicine: The Healing Power of Music

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment. Here is a list of some crowd favorites.


July

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis, especially during a global pandemic. Here are some recommendations from cancer treatment experts.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

A list of 10 quotes and messages of hope and inspiration from patients that can bring you that much needed boost in your day.


August

Turning Your Home Into a Sanctuary

These days we are spending more time at home, so you need to feel like your happy place. Turn your home in a sanctuary in 5 simple steps.

Oncology Social Worker Checklist

Oncology Social Worker, Sara Goldberger, MSSW, LCSW-R, shares her checklist for resiliency during the time of a global pandemic.


September

The Nitty Gritty on Care Partnering

Casey Quinlan provides a short checklist that can be used in any patient-with-a-bedside-care-partner situation.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

A recent study published examines the connection between air pollution and respiratory health among cancer survivors.


October

Patient Empowerment Revisited

In this Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use.

The Power of Journaling During Cancer Treatment

This article is meant to help cancer patients understand just how much journaling can help them emotionally and physically during their treatments.


November

The Caregiver Impact: A Vital Part of Healthcare

Network Managers, Carly Flumer and Sherea Cary, team up to discuss the importance caregivers and some quick tips for caregivers.

5 Ways a Patient Portal Can Improve Your Health Care Experience

This blog shares 5 helpful tips for utilizing your patient portal to the fullest.


December

“Wait, There’s a Good Cancer?”

Carly Flumer shares her thyroid cancer diagnosis story and what it’s like being told you have the “good” cancer.

Chronic Myeloid Leukemia (CML) Patient Profile

A patient story from a chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, patient.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

This month, I thought we could all do with a little quotation inspiration. When you’re dealing with cancer, some inspiring words can be just the thing to give you a daily lift.

Note this is not the same as saying that “thinking positive” is the best way to deal with cancer. While for some, a positive thinking mindset can help them cope, for many others, the tyrannical think positive brigade only makes us feel worse.

Thinking back on my own cancer experience, there were certain messages of hope and inspiration that I received which help bring some much-needed perspective to my situation.

So with the help of our community, I’ve compiled the following quotes and messages to inspire and uplift you today.


Julia (@juliabarnickle), turns to her own words of wisdom to get her through her various cancer experiences over the past twelve years. In particular this one: “Nothing in Life is worth worrying about.”

 

Nancy (@nancyspoint) also looks to her own words for motivation. “Be real. Be you. It’s enough,” she says.

 

Take a leaf out of Ilene’s (@ilenealizah) quotebook. “When inspiration moves to another neighborhood, I often reference poetry, especially Mary Oliver and Maya Angelou (And Still I Rise)” she says. “Yet I shiver in the cool winds of words whispered in history, my mind running wild as I open up my quotebook (notebook of quotes)‘ to add or to discover. I picked these randomly on purpose, and in no quantitative or qualitative importance of order:

 

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

 

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”— Martin Luther King Jr.

 

“The knack of flying is learning how to throw yourself at the ground and miss.” —Douglas Adams

 

Sarah (@he4dgirl) shares with us a three-word quote from CS Lewis – one that I have turned to often myself: “Courage, dear heart.”

 

Another one of my favorites is from the author, Cheryl Strayed, who writes: “The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. You’re a woman who can travel that far.”

 

Finally take inspiration from Cancer biologist, Triona (@NiTriona) and pass on some encouragement to another person today. Triona shares these words from poet and philosopher, John O’Donohue (Eternal Echoes) to remind us of the gift that encouragement bestows.

 

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crossed on your own.”

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis.

Getting a cancer diagnosis, or dealing with ongoing treatment for cancer, during a global pandemic makes a hard thing feel almost impossible. “Can I even get treatment right now” is a question I’m hearing from a number of cancer community members around the world. This is a particularly thorny question in the US, where infection rates continue to climb in hot spots across the country, but there are few countries who aren’t dealing with some level of COVID infection, and its impact on their healthcare system.

Dealing with a diagnosis now means working with your treatment team to figure out surgical options and adjuvant (chemotherapy and radiation) treatment protocols, while also figuring out infection risk. Cancer treatment affects the immune system, making patients more susceptible to COVID.

Here are some recommendations from cancer treatment experts at the NIH/National Cancer Institute:

  • Cancer treatment affects the immune system, putting you at higher risk of COVID infection.
  • If you’re undergoing cancer treatment and have chronic conditions such as asthma, heart disease, diabetes, HIV, obesity, kidney disease, your risk is further increased.
  • Cancer survivors can also be at increased risk for COVID, particularly if they received bone marrow transplantation as part of their treatment.
  • If you’re currently undergoing treatment, discuss your treatment plan with your oncology team – can you make fewer trips to the clinic? Is oral chemo an option if your current treatment is infusion-based? Are virtual visits possible for routine evaluations?
  • If you have not yet started treatment, work with your clinical team to figure out if surgery can safely be delayed; if not, follow the surgical safety guidelines for the hospital where your surgery is scheduled.
  • Manage your increased risk of infection by rigorously following handwashing protocols, avoiding touching your eyes and face, wearing a mask when you leave the house, maintaining physical distance (6 feet) from people who don’t live with you, disinfecting frequently touched surfaces regularly.
  • If you’re in a clinical trial, find out if the trial you’re participating in, or considering participating in, can go virtual – can the trial site accommodate virtual visits, and remote labs?

Living through a pandemic is challenging for everyone. Living through it while dealing with cancer treatment doubles, or even triples, that challenge. The key is to bring up your concerns with your treatment team, working with them through every step of infection prevention protocol to ensure you not only survive your cancer diagnosis, but also the global COVID epidemic.

Survival is a team effort, always.

5 Technologies Shaping the Future of Healthcare

From implants to self-diagnosis, innovation is growing in the medical industry, and can soon transform healthcare all together. Although technology has already evolved since the development of the microscope back in the 17th century, the health industry is still welcoming more advances to medical and surgical tools, as well as new ways to make effective medicines and vaccines.

In this article, we’ll take a look at the five ways that technology is pushing the medical industry to another level, and shaping the future of healthcare.

1. 3D-Printed Prosthetics

“Prosthetics are one of the most requested products in the medical industry, especially with amputee patients,” says Michael Keener, a business writer at Boom Essays and Academized. “And with 3D printing, it’s now easier to create prosthetic limbs, and make these products more accessible to people worldwide. Ever since the success of the 3D-printed mini heart, now 3D printers are a must-have.” 

2. Biosensing Contact Lens

Recently introduced by UNIST’s team of researchers, biosensing contact lens will be able to detect glucose levels in diabetic patients, whenever there are tears in the eye. Having built-in transparent electronics, the lens, fortunately, won’t bother people who wear them. Sounds amazing, right?

And although the lenses aren’t in the market yet, UNIST is hopeful that they’ll soon be available in the near future. 

3. Virtual Reality (VR)

VR is no longer reserved for video games. In fact, both patients and doctors can use VR to see what’s going on – whether surgeons are using it for noninvasive procedures, or patients want a virtual escape while they’re recovering from surgery in a hospital bed. 

In addition, VR software like Osso VR and ImmersiveTouch help future surgeons train for the real deal, and lets experienced surgeons and physicians perfect their operations and methods. According to a recent study from Harvard Business Review, VR-trained surgeons did around 230% better in their overall performance – faster and more accurate in performing surgeries – than traditionally-trained surgeons.

VR also makes surgery and post-operation less painful for patients. With VR being as noninvasive as possible, patients suffering from things like gastrointestinal, cardiac, and neurological problems find them less painful when using VR to visualize soothing images and scenarios to distract them from what’s going on. Even women in labor can use VR to distract them from labor pains. With VR, the hospital experience is less stressful for patients.

4. Wearable Trackers And Sensors

With wearable trackers like Fitbit, it has never been easier for people to track their steps and heart rate. But pretty soon, these types of trackers and sensors will be able to detect one’s health status, so that people can take better control of their lives. Whether you’re looking to manage your weight, have lower stress levels, check on your body cognitively, or find a good level to be fit and active, wearable trackers and sensors will soon be able to do those things.

Here are some of the technological advances to date:

  • Fitbit Ionic – Lets you monitor your sleep, and even tracks your workout.
  • Polar H10 – Helps you find the best exercises for you, and fine-tune your current practices. (Wear this with the Fitbit Ionic, if you desire.)
  • The Muse Headband – Helps you focus on the major things that make your meditation session successful.

Now more than ever, it’s easier for people to track their health, and get a better hold of what they would need to do to stay healthy and active. 

5. Nanotech

“Nanomedicine will soon be a reality, if not now,” says Hollie Kelly, a project manager at Bestbritishessays and Academ advisor. “People are already seeing nanoparticles and nanodevices as our drug delivery systems, tiny surgeons, and cancer treatment tools.”

For example, there is already talk about smart pills like the PillCam, which is a noninvasive, electronic pill that can relay diagnostic information about the patient and or release necessary medication via smartphone. The medical industry is hoping that these smart pills can take biopsy samples for further analysis, or take the place of traditional, invasive surgeries.

Conclusion

With technology already changing our world at a rapid pace, healthcare will surely benefit from innovations from technological advances. Although these technological advances may not show up overnight, you can rest assured that doctors, physicians, surgeons, and developers are working towards these solutions, and promising a brighter future in healthcare.


Molly Crockett writes for Ukservicesreviews.com and Big Assignments. She also writes articles about writing and editing on Best Coursework Services. As a marketing writer, she shares her unique lifestyle tips and personal development advice with her audience.

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). [1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end?  Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” [3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts.  These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD.   Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors.  On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time.  Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

  • Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
  • Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
  • Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

 

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember,  there is no right or wrong way to think, feel, or respond to cancer.  Be compassionate to yourself and patient with the pace of recovery.  Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s  important not to ignore your feelings, obsessively dwelling on them will slow the healing process down.  One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals.  It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma.  Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

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

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey.  Look to cancer support groups in your area or search online for groups.   Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer.  A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening.  Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your  personal relationships, employment, or other important areas of daily life,  it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome.  Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security,  making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control.  It can take time to get over the trauma and feel safe again.  But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.


[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

[2]  The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

CLL Patient Cafe® – March 2019

Managing Side Effects and Symptoms

A group of CLL patients and a care partner discuss living with CLL and how to manage its symptoms and side effects.

For more CLL Patient Cafe® and other programs, please visit here.


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program. I’m Andrew Schorr, with Patient Power, and I want to thank you for joining us for another one of our CLL patient programs, and today, we’re gonna go from the United Kingdom, England, all the way to California with a group of people as we discuss living with CLL, dealing with symptoms and side effects. Emotional issues, how we communicate with our healthcare teams. I’ve been living with CLL about 23 years now, and also joining me here in California is Esther Schorr, care partner of course. Esther, thank you for being with us.

Esther:

No problem.

Andrew:

And along the way we’re going to include, obviously, the role of someone who advocates for you, and urge you to have someone to do that. Let’s go all the way over to England. We have Adrian Warnock with us. Adrian, you’ve been living with CLL how long?

Adrian:

Well, next month or so it’ll be two years, actually.

Andrew:

Wow, okay, and you’re a physician by training, so when all this medical stuff comes up, you’re evaluating it based on your training probably as well, although I know you haven’t been a CLL specialist.

Adrian:

Yes, that makes it quite an interesting thing, because when you look at the terminology, you have clinical trials. I’ve actually helped them run a lot of clinical trials, but not in hematology, in a completely different disease area. So, there’s some things that are very sort of familiar, and other things are less so.

Andrew:

Right. And we should mention that you’ve had a number of hospitalizations. You’ve had Treatment with FCR, fludarabine, cyclophosphamide, Rituximab, or Rituxan, that many people have had. I’ve had that, too. And right now, you’re doing okay. 

Adrian:

Yeah, I hope so. I mean, it’s early days yet. My last FCR was just a couple of weeks ago. But what I would say is my lymphocyte count is less than one at the moment, so if that continues to be the case, then hopefully we’ll conclude it was a good outcome.

Andrew:

Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.

Jay:

Hi, everyone.

Andrew:

And Jay, you were diagnosed when?

Jay:

January of 2016.

Andrew:

Okay, and what led to that diagnosis?

Jay:

What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thing. And at that point, as thick as I am, I knew something was wrong.

Andrew:

Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.

Jay:

Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.

Andrew:

Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. I’ll talk about mine as well. And joining us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayor. Maggie, you are still in the watch and wait phase. When were you diagnosed? 

Maggie:

I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.

Andrew:

Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it?

Maggie:

Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I’ve never felt better. I exercise a lot. I eat a healthy diet.

I’m just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.

Andrew:

My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.

Maggie:

Yeah, and actually, it was during that trip, and I told my husband, “I’m not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I’m extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.”

 And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I’ve learned a lot more about the disease. I’m, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I’m on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I’ve got a really good, positive headset now. But that first month was awfully really bad.

Andrew:

I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.

Adrian:

Yeah, so what happened with me, actually, when I got phoned up as well, I mean, that’s interesting that you should have a phone call. I don’t think anyone should hear news like this over the phone. But I got a phone call, I was actually lying in a hospital bed, with pneumonia, basically unable to walk, unable to breathe, and my head wasn’t working properly, I couldn’t really think straight. And it was the doctor from the first hospital that I had gone to in A&E a couple of days before, saying, “Hey, I’ve looked at your blood under the microscope, and,” like with you, she said, “I’m pretty sure you’ve got leukemia. I need to see you urgently.”

And I said, “Well, I’m in hospital, actually.” So yeah, I was dealing a sort of quite nasty pneumonia that took weeks to get on top of, whilst dealing with a three-quarters diagnosis. And honestly, I don’t know if doctors ever watch these, but really, they should learn a lot better than to tell people over the phone. It’s not very fun.

Andrew:

Right, and you’ve had a number of hospitalizations, but you’re doing well now.

Adrian:

Yeah, that’s right. Unusually, I had surgery. I had two operations on my tonsils, which can happen with people with CLL, but perhaps it’s a bit atypical. Mine was trying to choke me to death. I was losing my airways at one point.

But since I’ve had the FCR, my lymphocyte count is way down now. It’s well below one. Obviously, it was only a couple of weeks ago that I had the last one. But I’m back in watch and wait and worry, really. I’m very aware that particularly that first three months after the FCR will probably help to indicate whether it’s taken or not.

Andrew:

And Jay, so you’ve managed your CLL with your diet and it’s worked for you. So, when you say macrobiotic diet, what does that mean?

Jay:

Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I’m doing this because of CLL, and being able to live as healthy a life as you can.

But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I’m fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells.

So, unless someone’s ready to study me personally, I’m just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I’m very pleased.

Andrew:

Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?

Esther:

It’s going on 34.

Andrew:

34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with Obinutuzumab and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables.

Esther:

As organic as possible.

Andrew:

Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. I wanna ask Esther, though, what we do ourselves is part of it. But what about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?

Esther:

Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.

Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I’m not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I’ve felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be.

Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I’ve been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go.

So, I don’t know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.

Andrew:

Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?

Maggie:

I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctor’s appointments. He researches with me on the internet, so that’s an amazing – My twin sister and her husband are both therapists and have helped walk me through that.

My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I’ve given them the ling to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system. 

Esther:

Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.

Andrew:

So true. Now, Adrian, you have five kids, right?

Adrian:

Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.

Andrew:

How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –

Adrian:

It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”

It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.

Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really. 

But I would also say, I think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that.

Andrew:

Yeah, Esther and I did that as well. Jay, I want to ask you, so you, right now, are doing well, but you have – You live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows. 

Jay:

I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrated approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can.

I hope that I can get – I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.

Andrew:

And Maggie, what about you? What if it gets to the point where your physician here in San Diego says, “You know, has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?

Maggie:

I think mentally and emotionally, I’m fairly prepared for that. I’ve also tried to be as involved as I can in other – Leukemia Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts. 

And I have such faith and hope in what’s happening in trials and current treatments, that I know that at some time – my prognostic factors are probably five years, and I’m doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.

Andrew:

Now Adrian, you mentioned that you had severely inflamed tonsils, where you almost couldn’t breathe, and you said that’s kind of an atypical result of CLL. And you’re a physician, so I’d love your perspective on this. CLL can affect different people in different ways. What do you do as far as communication with your healthcare team, trying to sort out what’s related to the CLL and what isn’t? What’s related to the medication you’ve had and what isn’t?

Adrian:

It’s tough, isn’t it? Actually, in that instance, I was unable to sleep because every time I started to sleep, my tonsils did completely block and choke me, so I had a fair few days of not being able to sleep. But when I was admitted to hospital, losing my airway essentially, there was quite a bit of debate, because the EMT doctors looked at me, and they said, “Those tonsils don’t really look that inflamed. They don’t look that angry. We think this is not a sort of tonsillitis-type picture. This is not something typical. This must be more of a hematological problem. The guy’s got cancer, give him some chemo.”

The hematologist came and they looked at me and they said, “Well, the thing is, it’s only really the tonsils growing. The other lymph nodes, I don’t think we could even feel at that point, although they did grow later on, and his lymphocyte count is really low. Actually, they did say, “Could this be a transformation? It could be high-grade. So, there was a whole lot of debate between even those in that situation, about whether to operate

And obviously they did try some steroids for a few days, and c they didn’t shrink, they had no choice but to go in and operate, so that I could swallow again, and breathe again more easily. But that kind of thing has happened on other occasions, and when you get an infection, would you have got it anyway? Perhaps not, with my pneumonia. I mean, that clearly seemed to be related to my CLL in the first place. And I guess for me, personally, I just got to the point of going, “Well, we don’t always know whether it’s directly related or not.

I’ve got back pain. I’ve got some benign tumors in my back. We thought maybe that was causing it. Or is it the CLL growing it the bones cause it, or is it something completely unrelated, just ligament damage, or discomfort from the fact that I’ve been lying around for two years really, not mobilizing enough, not doing exercises despite my physio’s best efforts to get me going. You know, I don’t know, and I guess at the end of the day, we just have to look at the symptoms, really. It becomes symptom management and investigation.

I think it’s very important not to ignore new symptoms, because you never know what’s going to happen. I’ve heard of people having infections in bones and all sorts of things. Whenever I get a new symptom, I have to go to my GP, or I go to my hematologist, and we go from there, really. We investigate and we figure out what’s going on, or try to, at least.

Andrew:

Well, I wanted to talk about that very good point. And Esther goes with me to the doctor, and she knows, I say, “Well, I’ve got these little dots on my skin. Is that related to the CLL, or whatever?” Some things they know, because I call if I have a chronic cough or certainly feel like I have a chest infection, but other things, I don’t always know, but I always bring it up. What about you, Jay? You apparently, were not feeling well for years.

Jay:

Yeah, well, the funny thing was, I thought I was doing great. I was 193 pounds of muscle. I studied the martial arts for 20 years. I felt great, but I was 50 pounds overweight, so you just don’t know.

I thought I felt fine. I thought that occasionally getting fatigue was part of getting older, but when it got to that point where I couldn’t walk around the block without gasping for air, sooner or later you figure something is wrong. And then you take action. But the truth is, we’d all be better off, I think, if we understood the cues our body is giving us, but I didn’t at the time.

Andrew:

Right, and often the indication for treatment, Maggie, you’ve had various blood tests, but from what the doctors are telling us now in our programs, is are you having night sweats? Is your spleen enlarged? Do you have lymph nodes? Maybe do you have these kinds of things that Adrian

[00:27:59]. Certainly, do you have pneumonia, or recurring pneumonia?

All these things could be indications of treatment, not just the number of your lymphocytes. So, it requires communication. So, do you have really good communication with your doctor now, Maggie, and you feel you have a trust relationship, and that gives you confidence?

Maggie:

I did when I first met with my CLL specialist, I thought, “Oh, it’ll be a 15-minute meeting.” He spent almost two hours with me and talked about everything that was going on for me. If I thought it was a symptom, we discussed it. For me, probably a month before I was diagnosed, I started to get really bad sinus headaches. And I talk to my intern about this. I said, “Could it be the CLL?” And she said, “No, no, that’s ridiculous.” And I talked to Doctor Choy and he said, “Very likely, since this is an inflammatory disease, and this can affect your sinuses and it can affect your respiratory system. Any place that you can carry inflammation in your body.

And I felt like he really listened, because he said, “Here, try these different over-the-counter remedies,” and it’s really, really helped me a lot. But I do prescribe talking to your doctor, telling him anything. And I’m at that age of a female where menopause happens and you get hot flashes, but mine have continued. I’m over 64 now, and I talked to my CLL specialist. He said, “These are probably CLL-related.” So, even though I would like them to be menopausal hot flashes, I do believe they’re CLL hot flashes. I don’t have the drenching night sweats, but I feel like there’s a furnace inside me that just kind of turns on, and it wakes me up at night.

So, I’m trying to deal with that. I keep my room, my poor husband, at around 60 degrees at night. I’ve got two fans pointed right at me, and it helps me get through the night. So, these symptoms are –

Andrew:

But you have that [inaudible – crosstalk] [00:31:18] with your doctor to try to figure out what could be related to the CLL, and at some point, maybe, part of the indication for treatment.

Maggie:

Exactly, and if these get too bad, I’ll say I’m ready.

Andrew:

Well, I’ve been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party. 

So, what do you do about it? Do you just – antibiotics all the time? He said, “You should try a nasal wash, every day.”

Esther:

A netty pot.

Andrew:

A netty pot, or there’s some other ways. You can get a little squeeze ball.

Adrian:

Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a netty pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.

Andrew:

Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I’m doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?

Adrian:

Yeah, that’s right, and throat infections, yes.

Andrew:

I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?

Esther:

Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach.

The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don’t know what it was, Vitamin A or D, it was one of the vitamins.

And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”

So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I’m assuming your physician knows about it. Those kinds of things are good, to compliment whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.

Jay:

Absolutely. I’ve gotten some – somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I’m a year away from becoming a counselor, a macrobiotic counselor. So, I’ve been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy.

And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen over night, and you do things gradually. And every step you take, you check with your doctor.

And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna – But he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeing me healthy. He likes seeing my blood counts so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I’m using that medical doctor for his knowledge, and it should be a collaborative-type thing.

Maggie:

That was my point, exactly. Thank you, Jay.

Andrew:

Well said, really well said. Okay, so, we have a medical doctor with us, who’s also – So, Adrian, this whole person thing. What can we do that makes sense for us, that’s not harmful, and how do we partner with our doctors? How do you view it?

Adrian:

Well, for me, personally, when I was diagnosed, I was pretty fat. And I think, as a middle-aged guy, I think quite a few of us have a spare tire. And I resolved, straight away, I was gonna lose that. And I did, and that wasn’t because of the CLL. We do have to be watchful about that. We don’t want to be losing weight excessively fast. 

So, I did change my diet, not as radically as Jay, but for me, I decided to cut down significantly on carbohydrates, and just to maybe do a little bit of intermittent fasting. And I managed, over a number of months, to lose the weight gradually. But what I would also do, was every now and then, I’d have a cheat week, just to make sure that if I lifted the foot off the accelerator of my diet, that I would actually regain the weight, because I didn’t want it to be misconstrued that it was my illness. But if you look at my weight chart over those 60 months of watch and wait, it was gradually going down in a nice, smooth, controlled way. But unfortunately, that didn’t seem to help, for me, personally. It does for some people, but it didn’t for me.

The other thing I tried to do was physio. I’ve been seeing a physio now, most weeks, sometimes twice a week, since November of 2018, because I had this awful sense of the decline in my mobility. I was using sticks as a 46, 47-year-old, and I still do. 

But the physio, I do think, helped a bit, and I think exercise definitely helps, but unfortunately, it’s kinda like there’s a weight pulling you down, and sometimes exercise isn’t enough. But I tell you what, when I was stuck in my hospital bed, unable to get out, this was in November, after my first FCR, unable to get out safely, it was my physio that taught me some bed-based exercises that I think helped me to get out. One of my doctors was saying, “You’re gonna end up in a nursing home, Adrian, if we’re not careful here,” because I was just so weak.

And I just did some very simple things, lifting my legs out of the bed, pushing my bottom off the bed, things like that. Things that my physio had taught me. And then, over a few weeks, I gradually started to regain my strength. And that’s where I am at the moment. My physio says to me now, I’m very badly deconditioned, from the last nearly two years now, of being ill. And I’ve got to gradually build myself up, not overdo it, not boom and bust, not do too much, so that I don’t do anything, but gradually try and regain my strength.

And that’s after treatment, but I think sometimes in watch and wait, if you can get as thin as you can, if you can get to an optimal weight, and if you are allergic to foods, certain foods seems to provoke your inflammation, then definitely cutting those out. All of those things, to me, seem to make perfect sense, again, provided you’re talking to your doctors about it.

Andrew:

Right. Boy, this is such great advice. So, Maggie, how are you staying in as good of shape as you could be, knowing that you may have treatment, but you’re trying to do what you can do? What are things you do?

Maggie:

Right, yeah, so I think, and I do believe it’s the CLL, I do get tired in the afternoons. There’s an exhaustion level that I kinda never felt before. I’ve always been extremely fit and extremely active, so I made sure that I try to exercise every day, but I do it first thing in the morning. I’m a master swimmer and I play golf a lot. I do a lot of walking.

And when I was first diagnosed, I did notice that my times were dropping, as a master swimmer. And so, no I’m just not pushing myself as hard. But I’m still in the pool, I’m still working out. I’m still saying, “Hey, you’ve gotta push yourself a little bit, but don’t overdo it. Don’t way overdo it.” So, I stay active and that’s really important in my life.

Andrew:

I’ll just say, pass on one thing. A British doctor, Adrian, who you may know, John Gribben, is one of the top CLL specialists. He said to me years ago, before I had FCR, and Esther and I would run every day, and I probably couldn’t run as far as fast. He said, “After you have treatment, you’re probably gonna feel a weight is lifted from you.” So, that’s what I did. I mean, I did many of the things you’re talking about, Jay, as far as diet, exercise, but in my case, when it came time for treatment, which was a high white count, swollen lymph nodes and enlarging spleen. 

When we knocked the CLL back, Maggie, I did feel I had more energy. And just a couple of other things I’d mention, we were talking, and you were great about it, Jay, saying what’s working for you, and what you’re studying. But everybody’s saying check with your doctor. Esther, do you remember when you read something online, not just about the juicing, but distilled water and we had distilled water, and we lived in Seattle, where Starbucks come from, and you said, “Stop drinking coffee.” And I stopped drinking coffee.

Esther:

Well, that speaks to what happens to a care partner. I have to be honest, mia culpa, I felt no control over what was happening to you. So, I started to read everything I could find, and at the time, there was a book called spontaneous healing. The gentleman who wrote it was very well known national and internationally. 

Seemed to make sense. None of it was super extreme but living in Seattle and not drinking coffee was pretty extreme. So, I had to learn along with you, Andrew, that you have to – there’s a balance. You can’t stop living. You can take an approach like Jay, which, for him, a disciplined, very disciplined approach to eating is working for him. For you and I, what seems to have been working is good, healthy diet, exercise, laughing a lot, travelling, doing those things. That’s working, seems to be, knock on wood, working for you. And as a result, I feel like we’re working together on this. Yeah, it’s like, there’s a point where you don’t want to stop living over it.

Andrew:

Right, right. One other point, I mentioned that I’ve had CLL treatment twice, although separated by 17 years. And Adrian, post-FCR, I hope you have a long, long remission.

But we’re blessed with some very modern treatments now, and that’ll probably be discussed with you, Maggie, and should you need it, you, too, Jay. Lots of new thinking and lots of research, and several of us go to doctors who are in the lab as well as in the clinic.

And so, I feel really confident that if we do what we can: diet, exercise, emotional well-being that you were referring to, specifically, Adrian. If we get our head on straight, and take back control, with our partner, Esther, or whoever it may be for you, that we’ll be in the strongest possible position to live a long, long life. Maggie, do you feel that way when you think about it now? You’ve watched all these podcasts and videos. Do you and your family feel you’re gonna be around for a long time?

Maggie:

Yeah, and I’ve always said that CLL [00:45:10] under the ground. So, I’m gonna be out there on the, you know, the fullest life, the happiest life, and just stay as active and engaged and involved, and like you said, laughter is really important through all of this. When I laugh, I totally forget that I have this CLL, and it works for me. So, that’s my path.

Andrew:

Okay, so for final comment, Jay, you’ve been living with this, doing what you can. What would you say to people, whether they’re newly diagnosed or wherever they are, what advice, knowing that people are different, and you’re gonna be a counselor too? So, tell us what words of wisdom you have.

Jay:

Words of wisdom is this: I said it earlier, you have to do, you have to take some responsibility for your general health. And I think it’s just really irrefutable, that if you do things like watch what you eat, you try not to be too stressed, you make an occasion to walk a few times a week, you’re just going to feel enabled. You’re going to feel healthy. And you can’t give up.

You have your CLL life, and you have your general health, and they can’t be separated. You can’t have one without – You can’t have good CLL health, I believe, unless your body is very strong. So, do the best you can and take it slowly, but every day, set a goal to do something that might make you feel healthier, might make you feel less depressed. Live life, enjoy life, but don’t equate taking personal action and responsibility for not enjoying your life. To the contrary, you’re helping yourself live a longer and healthier life. That’s what I would say. 

Andrew:

I’m just gonna tell you one quick story. Esther and I went jogging at the end of the day, and a woman probably in her 20s ran past us, and I started speeding up. We didn’t catch her, but I was running faster, and Esther said, “You’re running so fast today,” and at the end I said, it was affirming for me that I could do it. That I could chug along a little faster was affirming. It was something I could do in one day that helped me.

Jay:

Andrew, you look great, so I have to ask you, seriously, I haven’t made you crazy and put you on a special diet, but what do you do besides running?

Andrew:

Just running, and this afternoon is going to be going on a bike ride. And I’m gonna try to go up the hill over here. And then maybe get some coffee, Esther –

Adrian:

But hopefully, not a latte, Andre. No lattes, yeah? No lattes.

Esther:

We get them with soy. We get it with soy milk.

Adrian:

It’s the sugar. You don’t want the sugar in the latte syrup, you know?

Esther:

Right, right.

Andrew:

So, I do that, but I think it’s a matter of, after 23 years of CLL diagnosis, just live your life. You said it Jay. And Maggie, for you, you’re playing golf, you’re laughing. You picked yourself off the floor after the diagnosis. You have everybody try to understand as best they can, and you go be yourself. And Adrian, you too. You’re trying little by little, to get back to equilibrium, right?

Adrian:

No, that’s right, and it’s about looking at the positive things. I mean, I think we have to accept sometimes it’s gonna be negative stuff, but there’s also positive things. So I’d gotten to the point where every night I slept outside of a hospital was a real gift, at one point. And just, the ability to, I don’t know, cook a meal for the family was a huge step for me. Things like that. And being grateful for things, and, as you say, moving along that journey and hopefully, heading in the right direction rather than the wrong one is always, always positive.

Esther:

I think a lot of this, I’m listening to this, a lot of it is attitude. Jay, you asked Andrew what is he doing, and I watch him every day. And he’s just two steps ahead of everybody. He’s just positive attitude, and whatever’s gonna happen, he’s gonna take as much control as he can, he’s gonna rely on his support system and his doctors, and he just keeps moving ahead. And I think that makes a big difference.

Jay:

Yeah, and I think the fact that you two, Esther and Andrew, do so much to try to help people, I think all of us would agree that if we’re trying to help people, it’s a wonderful thing, and we feel blessed and empowered. So, as bad as CLL is, and I hate having this disease, I think it’s a real bully, in my opinion, I’ve become maybe a more understanding person. So, it’s not all negative, you know. It’s mostly negative, but there are some bright things about it.

Andrew:

There really are, and so I appreciate every day. Maggie, you’re at a beautiful golf resort, La Quinta, so you’re just gonna go swing away now, right?

Maggie:

Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.

Andrew:

Well, I wanna let – Just, thank you for being part of this CLL patient café. I wanna thank our supporters, ABVI and Pharmacyclics, who have had no control over anything we’ve said. This is very free-wheeling, but we hope it helps everybody. Maggie Buckenmayor, I want to wish you all the best with your golf game, and wherever your CLL journey takes you. And don’t freeze your husband out, with the fans and the cool temperature.

Adrian, all the best as you continue the FCR and just hopefully –

Adrian:

No, I’m done with CFR. I’ve had my six. That’s over, mate. No more for me. I’ve had my six. Never again. The UK will pay for the newer drugs for me the second time around, so if I need anything else, it will be one of the newer drugs.

Andrew:

All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?

Adrian:

I’ll do my best.

Jay Blatt:

You’re gonna be carrying us, he means.

Adrian:

I don’t know about that.

Andrew:

Jay, thank you so much and all the best with you, and I’m gonna read up more about what you were discussing. And Esther, thank you for being my partner all these years, and all the partners out there, wherever you are watching, thank you. You’re a blessing for all of us, and we really appreciate it.

Jay:

Thank you, Andrew and Esther and everybody else. 

Maggie:

Thank you guys.

Adrian:

Thank you guys.

Andrew:

I’m Andrew Schorr, from Patient Power. Thanks to the Patient Empowerment Network, for putting all this together, and thank to our sponsors for helping us, so we can do this. As I like to say, remember, knowledge can be the best medicine of all.

The Importance of Sleep for Cancer Patients

Why sleep should be a main priority for those battling cancer

Experiencing trouble sleeping is common in both adults and children. There are many contributing factors as to why it’s difficult to get the sleep we want and need. Perhaps our sleep environment is not conducive, something is weighing on us mentally, or our children are awake at night. Sleep apnea or insomnia could also be playing a role. In addition to other protective factors, like proper nutrition and regular exercise, sleep is extremely important for our overall health. When something else is going on with our body that affects our health, such as a cancer diagnosis, it’s doubly as important in those cases.

About one third to one half of cancer patients report sleep disturbances. Many report having insomnia and feeling as though it is difficult to sleep at all. The percentage of cancer patients who report feeling this way is almost double the general population. For cancer patients, there are unfortunately a slew of reasons at play that are contributing and making sleep very hard to come by. At various points in time, getting the rest your body needs may prove difficult. Understanding the reasons sleep may be nonexistent is the first step in moving towards a solution. Next, implementing strategies to support restful sleep will increase your body’s energy and its ability to heal. Sleep heals us. Many people focus on the cancer treatment itself, followed by things that are known to make us stronger, such as eating protein and going for walks. Often sleep is overlooked as a crucial part of a cancer patients overall treatment plan.

So, why is it that cancer patients struggle to sleep in the first place? There are different reasons and every patient will react differently, physically and emotionally, to the journey of battling cancer. Some common problems include:

Stress/ anxiety about their diagnosis

It’s normal for our mind to race when we are worried or concerned. Throughout different stages of treatment, patients have a variety of stressors that may affect them such as fear of the future, telling their friends and family their diagnosis, as well as financial, work-related and/ or relationship concerns as well.

Interrupted sleep environments

Often when someone is getting cancer treatment, friends and family may offer to come to their home and help. While that is a kind gesture, it can also be problematic as sometimes it’s hard to get adequate sleep if there are guests in one’s home. Keeping this in mind and setting healthy boundaries is important for the patient and whomever they share their home with.

Symptoms, such as nausea and headaches, from treatment

Depending on the intensity of the symptoms and their duration, asking your Doctor/ care team for support on managing those adverse side effects will prove to be helpful. They may have some tips and ideas for how to specifically combat the symptoms, allowing more time for restful sleep.

Pain in one’s body from the cancer

Most cancer patients report the aches and pains in their body interrupt their ability to fall and stay asleep. Stretching, yoga, staying warm/ hydrated, medication, and other forms of pain management/ medication can be used. The more this overall pain is managed, the more the patient will be able to rest and heal.

Excessive sleepiness during the day

Cancer takes a major toll on one’s body. During the day, especially if the person has not slept well at night, they may be extremely fatigued. This pattern throws off the body’s normal sleep cycles and its circadian rhythm. It may be difficult for patients to regain their nighttime sleep in these scenarios.

 

There are a variety of reasons why sleep is vital if you are in any stage of cancer treatment. Many of the drugs used to treat cancer lower and weaken one’s immune system. Chemotherapy, a common cancer treatment, can affect the immune system for quite some time, even after the patient is done with those treatments. According to The National Sleep Foundation, sleep is a major component when it comes to boosting the immune system. “Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye.”

Targeting inflammation is also especially important for cancer patients, seeing as the body can become inflamed from the cancer itself and/ or the commonly used treatments for it. Reducing the inflammation in the body helps its ability to fight off infection and heal.

Besides building up the immune system, being well rested is also important because it improves our mood and decision-making skills. There are many decisions that need to be made by the patient and family, such as length of treatment, treatments they are willing to try, treatments they are opposed to, etc. Being well-rested helps people to be more energized and have a clearer, calmer ground to make these difficult choices from. Extreme fatigue can lead to (or contribute to pre-existing) mental health disorders such as depression and anxiety. In order to make sound decisions for one’s physical, mental, and emotional health, sleep is an important factor that should always be prioritized.

If someone in your life is suffering from cancer, it’s common to bring a meal or offer a ride to an appointment. These are wonderful ways to support that person. In addition, perhaps consider offering to watch their kids in the afternoons so they can take a nap or take household chores and errands off their plate to lower their stress and hopefully improve their ability to gain extra consistent sleep.

If you are a cancer patient do not be afraid to advocate to the people around you so you can best meet your sleep needs. This could mean asking your Doctor about symptoms that affect your sleep or asking your partner to help you get as much sleep at home as possible. That time while you are resting is crucial for your body as it fights the cancer, as well as your overall health too.

How Anxiety Impacts Sleep

Anxieties from the day can be inescapable by night. You can try so hard to sleep or to stay asleep, but worrisome thoughts cloud your mind and make it impossible to clear your mind enough to doze off. Issues like money, children, and work can seem overwhelming, where such anxiety-provoking topics develop into stress that causes your mind and body to stay awake. So what can you do?

Photo by Gregory Pappas on Unsplash

There are several comorbid factors to stress that can be problematic sources of your insomnia as well. Don’t let anxiety or these related matters control you though. Instead of trying to control the stressors in your life by thinking of them all the time, focus instead on what you can actually control:

Your Sleep Space

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Make your bedroom a stress-free sanctuary. Keep your bedroom dark, quiet, and cool, and use it only for sex and sleep. Since you can’t completely control anxiety, eliminate any other threats to your sleep quality, such as what type of mattress you sleep on. Consider what would the right mattress feel like for you, based on your individual sleep preferences. Use a fan to drown out extra noise, and make sure your pillows are comfortable too. Turn any clock away from you so you don’t get stressed out by seeing it is very late, if you are still awake. If you don’t fall asleep in 15 minutes, leave your bedroom and do something relaxing in another room.

Your Routine

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 Establishing daily and nightly routines is key for regular sleep, even on the weekends. Block out seven to nine hours for sleep every night, and make sure you wake up at the same time on both weekdays and the weekend. Stop consuming nicotine, alcohol, or caffeine at least three hours before your set bedtime, and avoid working, watching TV, or using a handheld mobile device in bed right before you try to fall asleep. Make it habit to set aside 30 minutes prior to bed to read, listen to soft music, or meditate, so you can relax, clear your mind, and settle into your bed as a stress-free tranquil zone.

How You are Staying Active

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 How active you are during the day impacts your sleep quality as well. Exercise is excellent for both physical and mental health, where exercising regularly helps you establish regular sleep patterns. You can take out your frustrations in exercise, where you leave the gym with a worry and frustration free head. Exercise also produces mood-enhancing endorphins – just remember to exercise only in the morning or afternoon, as those same endorphins will keep you up if you exercise right before bedtime. And your exercise doesn’t have to be major – even one brisk walk around your neighborhood each day has been demonstrated to help alleviate chronic insomnia. As exercise has been demonstrated to help you develop strength both physically and mentally, remember that mental health is a factor to also be considered when placing value and effort in improving your sleep life.

While increasing anxiety and decreasing sleep can seem like a never ending cycle, you can put an end to what feels so frustrating. By putting these principles and guidelines into practice, you are being proactive in making a difference for you. If you still have difficulty falling or staying asleep, reach out to family and friends for support, and consider seeing a therapist.

Tips For A Smooth Recovery From Oral Surgery

An estimated 51,500 adults in the United States get diagnosed with oral and oropharyngeal cancers each year. Many of these people require oral surgery as part of their treatment. Oral surgery itself can present problems, such as damaging teeth and gums, causing pain and swelling. Dealing with these before and after surgery can help to speed up your recovery time and improve your comfort throughout, getting you back to life as soon as possible.

Caring for your teeth

Many cancer patients lose their appetite during treatment or struggle to eat after oral surgery. They are encouraged to have high calorie drinks for nutrients, but these often contain a lot of sugar and can be very damaging to teeth.Oral surgery for cancer can be done after doses of chemotherapy or radiation, which can weaken teeth and gums. If you have any teeth that are damaged or vulnerable you should consider having these extracted before surgery as bone necrosis can occur afterwards, particularly if you’ve had oral radiotherapy. Once you’ve recovered, lost and damaged teeth can be replaced with dentures or dental implants to give a natural look and feel, helping you to live a normal life again.

What you can eat after oral surgery

Your surgeon will offer you advice specific to you, but there are some basic guidelines you should follow. Once any bleeding stops and for the first two days post-op you can eat soft foods and liquids, such as yogurt, soups and smoothies. Include foods that are rich in vitamins A and C as these help to speed up recovery from surgery. A study from the National Institutes of Health gave patients 500-3,000 mg of vitamin C, which is 8-50 times higher than the RDA. All patients were recovering from various types of surgeries, including oral surgeries. They found that the high doses promoted new collagen synthesis, which helped wounds to heal faster. Research from the University of Michigan also found that high doses of vitamin C before surgery reduced the risk of excessive bleeding, so upping your intake before and after can be beneficial.

Dealing with pain and swelling

Unfortunately, after almost any oral surgery you will experience some pain, swelling and possible bruising. Many surgeons will advise you to regularly put ice on the area to reduce swelling, however recent research indicates that ice can stop the immune system’s natural response and actually delay healing. Ice can be a natural pain relief though, so if you choose to use it, apply it for 5 minutes at a time with 20 minute breaks in between as this is less likely to stop the body’s natural response. You’ll probably receive pain medication too, make sure you take this as instructed, even before pain occurs as it can prevent it.

Recovering from oral surgery can be painful, but it can also be a step in the right direction for your recovery, helping you to lead a normal and happy life. Pain and swelling are to be expected, and consuming soft foods and plenty of nutrients and minerals can help with this.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

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