Non-Hodgkin’s Lymphoma Archives
Non-Hodgkin’s lymphoma is a cancer that starts in cells called lymphocytes, which are part of the body’s immune system. Lymphocytes are in the lymph nodes and other lymphoid tissues (such as the spleen and bone marrow).
More resources for Non-Hodgkin Lymphoma (NHL) from Patient Empowerment Network.
After Cancer, Ambushed By Depression
At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?
Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”
Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.
What Causes Depression?
Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness. However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.
In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.
Incidence of Depression in Cancer Survivors
Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life event like cancer have an increased risk of depression that can persist for many years. While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.
The Challenge of Identifying Depression in Cancer Patients
Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients. This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.
Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.
Are You At Risk of Depression?
Depression can occur through a combination of factors, with some of us being more prone to depression than others. Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.
Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.
Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.
Try answering the following two questions.
Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?
If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.
Depression Checklist*
(Tick each of the symptoms that apply to you)
- Trouble sleeping with early waking, sleeping too much, or not being able to sleep
- On-going sad or “empty” mood for most of the day
- Finding it hard to concentrate or make decisions
- Feeling restless and agitated, irritable or impatient
- Extreme tiredness and lethargy
- Feeling emotionally empty or numb
- Not eating properly; losing or putting on weight
- Loss of interest or pleasure in almost all activities most of the time
- Crying a lot
- Losing interest in your sex life
- Preoccupied with negative thoughts
- Distancing yourself from others
- Feeling pessimistic about the future
- Anger, irritability, and impatience
Add up the number of ticks for your total score: _______
What does your score mean?
- 4 or less: You are unlikely to be experiencing a depressive illness
- 5 or more: It is likely that you may be experiencing a depressive illness.
NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.
Depression – The Way Forward
It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.
The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there. Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression. There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.
The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.
A Note on Helping a Loved One with Depression
Perhaps you are reading this because you’re concerned about a loved one who might have depression. You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.
The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.
*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights
Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
Top Tweets and Advice
Care Coordination Means Everyone Is Working Together
You Are Your Own Best Advocate
Work For What You Deserve
Full Chat
Facing a Cancer Diagnosis: Advice From An Expert
Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.
Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key. Download the Office Visit Planner and bring it to your next appointment here.
Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.
See More From the The Pro-Active AML Patient Toolkit
Related Resources
 Find Your Voice Resource Guide |
 Key Genetic Testing After an AML Diagnosis |
 Optimize Your First Visit With Your AML Team |
Transcript:
One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.
So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.
So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.
So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.
And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources.
Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier
Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.
Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural
The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.
In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.
Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home
Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.
Don’t Forget Their Mental Health
Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.
For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.
Four-Legged Physicians: How Dogs Can Aid Patient Therapy
Dogs and humans have shared a special bond for over 12,000 years. Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death. A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting a long term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.
Mental Health
A long term hospital stay is difficult for patients, particularly those in critical care units. Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay. Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.
Dementia And Alzheimer’s
Patients in nursing homes go through many of the same problems as those battling in an ICU. Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress. A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group. Notably, many of the patients involved in the study had owned dogs in the past. A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life. For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.
Exercise And Physical Fitness
Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well. The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials. Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.
Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner. While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.
A Conversation With Becky Pleat
Specialty Pharmacy and the Patient Journey with Specialty Medication
In this segment of A Conversation With, Becky Pleat, PharmD, RPh the Associate Director of Medical Managed Care Oncology Specialist at Sanofi discusses specialty pharmacy and the patient journey. Becky answers the following questions:
- What is a specialty drug?
- What is a specialty pharmacy?
- Where can patients find a specialty pharmacy?
- How do patients receive a specialty medication?
- Will a specialty medication be covered by a patient’s health plan?
- What kinds of services and/or resources are offered at specialty pharmacies?
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.”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
The Restorative Power of Music
Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.
Music Therapy and Mental Illness
One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.
Follow the Music
A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety. There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.
The Results
Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.
Beyond the Study
Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.
Patient Assistance Programs (PAPs)
Patient Assistance Programs: A Guide for Patients
Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.
When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.
It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.
While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.
Find a PAP
The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.
Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.
John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.
NeedyMeds
There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs.
While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.
Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.
AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”
PAP Enrollment
Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.
The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.
Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.
PAP Qualification
Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:
- Have very limited or no drug coverage from public or private sources
- Must demonstrate a financial need based on a set income and assets
- Provide proof of US residence or citizenship.
“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”
In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.
“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”
PAP Basics
Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.
AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.
Are PAPs Worth It?
For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.
Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”
Sources:
Medication Maintenance Tips for Caregivers
Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.
Make Sure Providers Are Aware Of Vitamins And Supplements
Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.
Instructions
Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.
Alarms
Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.
Keep A List
Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.
Smartphone apps can also be helpful in tracking this information.
Follow Up
It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.
Store Medications Properly
Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.
When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:
- Odd smells
- Discolored pills, tablets and injections
- Cracked or crumbled pills
- Pills and tablets that are stuck together
- Creams and ointments that show separation
- Cloudy injections
If you see these signs, contact your senior’s pharmacist as soon as possible.
Sort Medications Into Pill Organizers
Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.
Make Sure All Caregivers Know About Medications
A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.
Plan Ahead For Refill Needs
Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.
Consider Compounding Medications If Needed
Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.
Get Tips from A Medical Provider
When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.
Always Communicate With Family Members
Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.
Susan Ashby joined the Superior Senior Care team in July of 2014 as Community Relations Manager. With over 27 years of experience in geriatric health, Susan brings a wealth of knowledge and insight to Superior Senior Care and plays an integral part in connecting consumers and communities with resources for independent living.
Everything You Need to Know About Dating with a Chronic Illness
If you live with a chronic illness like pulmonary fibrosis, diabetes or Crohn’s disease, your dating life is going to look a little different–and that’s okay. Being single and navigating the world of dating is challenging for everyone, but it can be especially difficult when your life comes with complications like needing to pack medication every time you leave home for more than a few hours.
Finding someone who shares your interests and who will support you through life’s ups and downs takes time, so be patient and have fun. Whether you choose dating sites, singles events, clubs or meetups, putting yourself out there will help you find that special person who will love you unconditionally–even on your worst days. If you are single with a chronic illness, follow these tips to make your dating journey a little easier.
Be Upfront About Your Illness
Deciding when to disclose your illness to a potential romantic connection is entirely up to you but consider telling them about it at the beginning of your interaction. It can be difficult to open up about something so personal to a stranger you don’t know and trust, but it can help you weed out people who aren’t worth your time. If someone isn’t going to accept all of you and love you the way you are, that person isn’t worth dating.
If you are anxious about discussing your illness with a date, why not use technology to your advantage? Tell them about it over an email, text message or phone call. People’s first reaction when they find out about your illness may be shock or discomfort, so allowing them time to unpack that information before you sit down for a date can help you both decide if moving forward is right. Plus, by the time you meet up, they’ll have had a chance to let it settle and come up with meaningful questions they have about your illness and how it affects your life. Being upfront is scary, but it’s an incredibly helpful dating tool.
Highlight Your Best Assets and Don’t Be a Victim
You’re going to be just as self-conscious on a first date as anyone, so practice the best piece of dating advice out there and play up your best assets! If your illness has caused some weight loss or weight gain, go shopping for an outfit that fits great and highlights your favorite body parts. Experiencing hair loss? Try a cool hat or an updo. Figure out what you love most about yourself and play up those areas while minimizing the things that make you feel self-conscious. Confidence looks hot on everyone.
People are going to follow your lead when it comes to your illness. The more relaxed you act about it, the better they will feel about it. If you are sad about it, they will feel sad about it. Lead by example and don’t walk around holding up a sign that says you’re a victim. You’ve got to love yourself before anyone else can love you–with or without a chronic illness.
Be Willing to Adapt
Things aren’t always going to go as planned, so adaptability is key to avoiding some of the frustrations of dating with a chronic illness. You might have just spent hours getting ready for a date and then realize you need a nap. That’s okay. Sometimes your significant other may want to do something your body won’t let you do. It’s going to be frustrating at first, even embarrassing. But once you and your partner learn that plans will sometimes change, you’ll see that it doesn’t need to affect your relationship negatively.
If you have dietary restrictions, consider alternatives to the dinner date. We tend to have it hard-wired into our brains how a date should look, but quality time can be spent in many ways. Do something outside, enjoy the arts, see a movie and pack your snacks from home. Who cares if your dating life looks a little different than it does in cheesy romantic comedies? Life happens and the more willing you are to adapt, the better you can love and be loved.
Don’t Overdo it and Laugh it Off if You Do
Adventure sports or extreme roller coasters might not be the best first date ideas if you live with a chronic illness. Don’t pretend like something is fine if it’s not. If you have a migraine, you’re not going to have fun at a rock concert, and if you are miserable, your date isn’t going to have fun either. It’s better to be upfront about how you are feeling and what you can do than try to tough it out and deal with the consequences later. Pretending isn’t fun and it’s not a good way to get to know someone.
When you do find yourself in a less-than-ideal situation, remember to laugh it off. You’re going to fall sometimes or need to sneak away to give yourself medication or treatment in an awkward way. Don’t take it too seriously. There are many circumstances you go through with a chronic illness that are silly and it’s best to laugh about them rather than make them a big deal.
Recognize When They Aren’t Worth Your Time
Some people just don’t have what it takes to handle someone’s health issue. Some people lack empathy or don’t have the willingness to nurture others. If someone is insensitive, rude, describes you as “difficult” or their lifestyle contradicts yours, you need to let them go. People who are worth your time and energy as a friend, let alone a potential romantic partner, will understand that you have good days and bad. They won’t ever fully understand what you go through, but they’ll want to try. They’ll be respectful, supportive and loving.
Remember You Are Worthy of Love
Don’t define yourself and your personality by your illness. You are a person, first and foremost, who happens to be sick. When you stop thinking of yourself as an illness, others will, too. You may have certain limits in life, but that doesn’t make you less worthy or capable of love. Not by a long shot.
Brenda Kimble is a writer and caregiver based in Austin, TX. In her spare time, she enjoys blogging and connecting with others in her field. Outside of work, Brenda loves doing yoga, completing new DIY projects around her home, as well as spending time with her husband and three children.
Finding Your Voice #patientchat Highlights
Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.
A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:
The Top Tweets…
Full Chat
Tips on Finding a New Job or Changing Career after Cancer Treatment
In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration. In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.
There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer. Or perhaps you need more work flexibility – such as the option to work part-time – but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.
Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.
1. Get Clarity on Your Direction
A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.
- What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
- What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
- Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
- Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
- Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?
2. Update Your Resume
The next step is to get your resume in order. If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one. This is good news if you want to work around a gap in your employment history. For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name. You should aim to provide an example of an area of accomplishment related to each specific skill.
Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.
3. Develop Your Network
Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.
Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.
4. Optimize Your LinkedIn Profile
Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search? LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.
You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).
- Make your first visual impression count by displaying a high-quality professional photo.
- Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
- Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
- Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
- Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
- Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
- Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.
Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.
5. Mind Your Digital Footprint
Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up. Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.
While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers. Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment. But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.
Pro Tip: Take some proactive steps to protect your privacy online. Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.
6. Handling the Job Interview
A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.
Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers. Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.
Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job. However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.
Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.
7. Considering a Career Change
Cancer changes your outlook on life. Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended. I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.
Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy. “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer. “That made me angry, because we should all have equal access to quality care. I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”
Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri. “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”
At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”
Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community. “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Returning To Work During or After Cancer Treatment: Part 2
This is the second part of a three-part series which deals with common concerns on returning to work after a cancer diagnosis.
In Part 1 of this series, I shared some tips with you on how to prepare for your re-entry into the workplace. In this article we will look at practical ways to handle issues such as fatigue and concentration, managing your workload, and dealing with stress.
Let’s start with some tips on coping with fatigue as it’s probably the biggest challenge you will face, regardless of whether you are working during treatment or returning to work after treatment has ended.
Coping With Cancer-Related Fatigue
Cancer-related fatigue (CRF) is increasingly recognized as one of the most common and distressing side effects of cancer and its treatments. It has been estimated that from one quarter to nearly all cancer patients experience CRF during and after treatment. Although things generally improves after therapy is completed, some level of fatigue may persist for months, or even years, following treatment.
Commenting on the impact of CRF on her own work, Kate Bowles, who was diagnosed with breast cancer in 2013, says, “The main advice I give is that chemo related fatigue is real and lasting. And also that your priorities change, often in very empowering ways. I am very calm in my job, because I really know now that it’s just a job.”
A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.
Making some adjustments to your everyday routines can also help you cope with CRF.
Here are three ways to do this.
1. Make deposits in your ‘energy bank’
You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.
2. Plan your day
Planning is key when you have fatigue. Write a ‘To Do’ list each evening so you can prioritize the things you need to do at work the next day.
3. Do some regular light exercise
Try to get out in the fresh air for a walk at lunchtime. Although exercising may be the last thing you feel like doing when you’re tired, if you don’t exercise, you’re more likely to experience fatigue.
I also recommend you download a free app called Untire, which contains a program that will help you track and improve your energy levels. The app uses theories and techniques from scientifically proven cognitive behavior therapy, mindfulness-based cognitive therapy, positive psychology and physical exercise interventions.
Time Management
Managing your time at work is all about learning to work smarter, not harder. It’s not about packing more tasks into your day, but about streamlining how you go about your work and prioritizing key tasks.
Here are seven tips to develop better time management skills.
1. Track your time and eliminate the non-essential
First things first. If you’re going to manage your time better, you need to figure out where you spend your time. Use a tool like RescueTime to track your activities for a week. This will help you determine how much you can realistically accomplish in a day, identify the time of day when you are most productive, and uncover daily timesucks, such as reading emails (unsubscribe from those e-mail lists you no longer need). When we can clearly identify our daily time sinks and remove them, we become more focused and productive.
2. Do the most important thing first
Mark Twain once said, “If it’s your job to eat a frog, it’s best to do it first thing in the morning. And if it’s your job to eat two frogs, it’s best to eat the biggest one first.” The point that Twain was making is that you should take care of your biggest and most-challenging tasks first thing in the morning.
Each day, identify the one or two tasks that are the most important to complete, and get started right away on them. If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days. When you have accomplished a task, mark it off your list with a pen. This provides a psychological boost as it gives you visual confirmation that you are getting somewhere.
3. Batch related tasks
Batching refers to the process of using blocks of time for specific repetitive tasks. Different tasks demand different types of thinking, so save yourself time and mental energy by focusing on one type of task before moving on to the next.
4. Focus on one task at a time
Finding it hard to concentrate is a common effect of having had cancer. To combat this, focus on one task at a time instead of multi-tasking. Research tells us it can take up to 30 minutes to return your attention to whatever you were doing before an interruption. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
5. Take regular breaks
Allow yourself down-time between tasks. Break for lunch and take additional short breaks throughout the day. Maintain your energy reserves with nutritious snack breaks. Pack nuts, fresh fruits and veggies, hummus, or low-fat cheese to take to work with you.
6. Set time limits for tasks
Give yourself a certain time by which you will complete a task. For instance, reading and answering email can consume your whole day if you let it. Instead, set a limit of one hour a day for this task and stick to it. The easiest way to do this is to assign a solid block of time to this task rather than answering email on demand.
7. Let go of perfectionism
Stop trying to be perfect. When you’re a perfectionist, nothing will ever be good enough. That means you’ll stick with a task long past the deadline. You’ll say yes to too many things and take on too much in an effort to prove to yourself, and others, that nothing has changed since your cancer diagnosis.
Sometimes you need to realize that good enough is sufficient and when you reach that point, then simply stop. This is not an excuse to do a poor job, but it is intended to give you permission to do a good job and then leave it there. Don’t waste precious energy and time polishing and perfecting something past that point.
Managing Stress
It’s normal to feel some stress on returning to work, so it makes sense to plan ahead for how to deal with stressful situations. Here are some tips to help you.
1. Identify your body’s stress response
How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your own individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.
2. Slow down and pay attention to your breathing
When stress hits, everything speeds up. Our thoughts race, our heart pounds and our breathing increases. This can make it difficult to think rationally. Consciously slow down your breathing. When we are stressed we tend to breathe more shallowly. When you feel stressed, practice taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down, lowers blood pressure and helps us feel calmer.
3. Come back to your senses
One of the best ways to stop getting lost in your thoughts is to come to your senses and ground yourself in the present moment. A simple exercise is to notice five things around you. Practice this periodically throughout the day, especially at those times you find yourself getting caught up in your thoughts and feelings.
- Look around and notice five things that you can see;
- Listen carefully and notice five things that you can hear;
- Notice five things that you can feel in contact with your body (for example, your feet upon the floor, your back against the chair);
- Finally, do all of the above simultaneously.
4. Take Some Exercise
Physical activity is one of the simplest and most effective ways to reduce stress and anxiety – providing a natural outlet for your body when you are exposed to too much adrenaline.
Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.
Go for a walk, head to the gym or find a lunch-time yoga class. Throughout the day take short breaks to stretch or do simple exercises at your desk.
Wrapping Up
Handling your re-entry to the workplace after a cancer diagnosis is all about organizing your time better, prioritizing your workload, establishing boundaries and becoming more comfortable with saying no to unreasonable demands.
Above all, it’s about making your health your top priority. Get adequate sleep, eat healthily, take some exercise and incorporate stress-management techniques into your daily routines.
I know from personal experience it isn’t always quite as straightforward as I have laid things out here. There will be many ups and downs. Deborah Bowman, a Professor of Medical Ethics, who was diagnosed with cancer in 2017, urges self-kindness and patience. “Don’t be afraid to say if it becomes unexpectedly (or expectedly!) difficult,” she says, “be kind to yourself and allow others to be kind to you too. Accept it may be up and down rather than a straightforward trajectory. Celebrate your good moments and forgive yourself the harder moments.”
Next month in Part 3 of this Returning To Work series, we will take a look at the opportunities and challenges of finding a new job after cancer. Until then, if you have any tips to share with readers about how you coped on returning to work, please share them in the comments below.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
