Internet Research

In the past, patients were often told to avoid doing their own internet research. That was because the internet really is a dumping ground for both information and misinformation. More and more, doctors are appreciating their patients’ efforts to participate in their healthcare. This is especially true when the patient uses internet research wisely.

Benefits of doing your own research:

You can decide if what is happening merits a trip to the doctor.

Often you can be put at ease when you discover your symptoms might feel awful, but you most likely have a cold. Sometimes, odd, but otherwise painless symptoms mean something more ominous is happening. For example, when my husband felt 3 hardened lymph nodes above his left collarbone (supraclavicular nodes), that specific symptom was said to indicate a 90% chance of metastatic lung cancer. It seemed improbable since he had never smoked and like most people, we thought of lung cancer as a smoker’s disease. Still, he made an appointment that saved his life.

Your doctor can’t keep up with all of the latest innovations in their field

Often, we expect our doctors to know everything. The medical field has become a complex place. Two years ago, my husband was ready to go to hospice. He could barely breathe; the cancer had so filled his lungs. He’d been following the experience of a blogger who was on a trial. Dan seemed to fit the profile of an ideal candidate for the drug. Finally, the FDA approved Tagrisso (a couple of months ahead of schedule). Dan asked his doctor to look into it. She did. She had him tested for the mutation the drug-treated and he was a match! Within two weeks of being on the drug, he was able to breathe again. He’s been on the drug ever since. His doctor appreciated his research and self-advocacy.

There are some drawbacks to internet research:

Sometimes the thing you think will be great—isn’t.

I’ve been using turmeric supplements as a way to ease the pain I experience from rheumatoid arthritis. Because it has worked well for me, we wondered if it would help with the pain Dan is in every day. We asked the palliative care specialist about it. She told us that even though turmeric is natural and over the counter, it isn’t something Dan should use. Turmeric is a natural blood thinner and Dan is a hemophiliac. It can also affect his blood counts that are already low because of the treatment he is on. We were glad we didn’t assume that an otherwise safe supplement is safe for him. Always check with your doctor about over the counter or “natural” supplements.

Internet Research isn’t a replacement for a doctor

No matter how empowered we can feel by the internet, there’s no replacement for a medical degree and years of experience. I often write posts for Quora, a user-input-based site. Every week, scared people ask me if their symptoms are indicative of cancer. I use the platform to encourage people to see their doctor when they are experiencing unusual symptoms. While most of these people don’t have cancer, there is often something happening with their health which needs to be addressed by a medical professional.

How you approach internet research is important

“Just the facts, Ma’am.”

Internet research has become second nature for most people, whether they are looking for a new car or the latest cancer treatments. It’s easy to pull up endless pages of information. But is the information factual? Is it experiential? Positive? Negative? These can be difficult questions to answer.

While the internet can be a valuable tool, it can also be a very frightening place, especially when you research cancer. Survival rates and statistics sound overwhelming when they’re not placed in the proper context. If you choose to research your symptoms or your diagnosis on the internet, use reputable websites. What makes a site, “reputable?”

User-Input Based Sites

Social Media and other user-input based sites such as forums have given everyone a platform. Because of that, there’s a lot more opinion on the internet than fact—especially when it comes to health issues. It’s difficult to wade through the endless sea of contradicting statements. Everyone has an opinion about cancer, cancer treatment, and what people should be doing. Random, anonymous people are very comfortable giving their opinions online. “Opinions,” is the keyword.

Many people use the Internet as their therapist. They post all their fears and the “what-ifs” online, where to the undiscerning eye, it can be frightening. While blogs and “cancer support” sites can be helpful for patients looking for support, they can also be a source of misinformation and confusion. The Internet tends to capture the negative. Because of this, use caution when reading user-input based sites. Keep in mind that the writer’s individual situation is different from yours.

Reading as a writer

Pseudoscience

Pseudoscience is rampant on the Internet. The Scrivener WordNet Dictionary defines pseudoscience as, “an activity resembling science but based on fallacious assumptions.”

Problems arise when patients or their loved ones believe pseudoscience and it contradicts what a health care provider recommends. This can cause a patient to delay a legitimate course of treatment. Meanwhile, cancer can spread.

This isn’t only a problem with cancer. I know of someone who didn’t follow their doctor’s advice in favor of another form of “treatment” for their diabetes. She went blind and ultimately died of a diabetic coma.

Rifts between family members often happen when they don’t agree on a treatment approach in light of a false promise made on the internet. The result is guilt, discord, and hurt feelings within the family.

What you need are facts pertaining to the cancer that you or your family is facing, rather than the cancer someone else has.

 

Using Trusted Resources

Health information, whether in print or online, should come from a trusted, credible source. Government agencies, hospitals, universities, medical journals, and books that provide evidence-based information are sources you can trust. Too often, other sources can provide misleading or incorrect information. If it makes claims that are too good to be true, remember—they usually are.

The National Cancer Institute gives the following advice on internet research:

Online sources of health information should make it easy for people to learn who is responsible for posting the information. They should make clear the original source of the information, along with the medical credentials of the people who prepare or review the posted material.

Use the following questions to determine the credibility of health information published online:

  • Who manages this information? The person or group that has published health information online should be identified somewhere.
  • Who is paying for the project, and what is their purpose? You should be able to find this information in the “About Us” section.
  • What is the original source of the information that they have posted? If the information was originally published in a research journal or a book, they should say which one(s) so that you can find it.
  • How is information reviewed before it gets posted? Most health information publications have someone with medical or research credentials (e.g., someone who has earned an M.D., D.O., or Ph.D.) review the information before it gets posted, to make sure it is correct.
  • How current is the information? Online health information sources should show you when the information was posted or last reviewed.
  • If they are asking for personal information, how will they use that information and how will they protect your privacy? This is very important. Do not share personal information until you understand the policies under which it will be used and you are comfortable with any risk involved in sharing your information online.

You can learn more about doing internet research as well as using other sources of information cancer, by checking out the National Cancer Institutes’s Website: http://www.cancer.gov/about-cancer/managing-care/using-trusted-resources.

Sometimes it’s good to take a “digital break.”

While internet research can be really helpful, there are also times when it’s good to take a digital break.  That’s what I’m going to be doing in the month of January. I’ve noticed that I’m not getting as much writing done as I should be, so rather than spending time on email, social media, and other online activities; I will be writing and reconnecting with my goals for 2018. You will still see weekly blog posts on Facing Cancer with Grace, because I have already written them and will post them automatically, using a scheduler. Even though I may not respond to your comments right away, I will read them and appreciate them greatly. Since I won’t be sharing my posts to social media in January I would appreciate it if those of you who use social media would share my posts. Thank you!

What are YOUR thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family, Photo by Everbranch Photography

Originally posted 2018-01-15 07:00:48.


Ways you can help a caregiver

During the month of April, I participated in the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I concentrated on writing posts for caregivers, There are many ways you can help a caregiver. Raising awareness of what day to day life is like as a caregiver is how I help.

At Heather Erickson Author/Writer/Speaker, I wrote a retrospective post about what it was like writing 55 posts, posting them all in April, and then reading and commenting on the blogs of other participants. Check it out!

In this post, I share some of the many ways you can help a caregiver.

By choosing a couple of these suggestions you can help a caregiver greatly reduce their stress, and cope with their role as a caregiver. Which suggestions you decide to take on, will depend on your relationship with the caregiver and their specific situation, such as whether or not they have children.

These suggestions come from chapter 10 of the book, Facing Cancer as a Friend: How to Support Someone who has Cancer

Here are some ways you can help a caregiver if you are close to them:

  • Make sure the caregiver doesn’t neglect their health. They should be making regular trips to the doctor and dentist.
  • Keep an eye out for signs of depression in the caregiver.
  • Encourage the caregiver to set up a blog such as caringbridge.org or an email list so that they can keep people updated without having to repeat themselves so often. If they are overwhelmed by this, you could start it and maintain it until they’re ready to take it over. Of course, only do what they are comfortable with. And, have the caregiver review any updates for accuracy before posting.
  • Allow the caregiver to vent. They often feel guilty expressing feelings of discouragement and frustration, so they keep them inside.

Here are some ways you can help a caregiver if they have young children:

  • Bring your young children to visit elderly patients, caregivers, and their children. This can often brighten up their day.
  • Babysit their children. Take them to and from school and activities. Take the kids out for a fun couple of hours. It can be an event, a restaurant, taking them out for ice cream, having them over for a sleepover, or just an hour in the park.
  • Take children to dental and doctor’s appointments. All too often, these appointments slip through the cracks of a busy schedule being maintained by exhausted parents. Ensuring the kids get their normal check-ups can prevent problems for them later on.
  • Offer to bring children to their place of worship if the parents are unable to go.

 

You can help a caregiver if you are close to the patient:

  • Offer to spend time with the patient if the patient is too ill and unable to be left alone. This will enable the caregiver a couple of hours to get out of the house or even to just take a much-needed nap. This time can be very renewing.

Here are some ways you can help a caregiver by pampering them:

  • Take the caregiver out for a coffee or lunch date.
  • Schedule a weekly walk with the caregiver. This will help them get often needed exercise and fresh air. During inclement weather, you can walk in a mall. Often malls open early, before the stores do, so people can walk without the crowds. Check out the Wikipedia article on this: https://en.wikipedia.org/wiki/Mall_walking.
  • Offer to take them out to a movie. If they’re too tired, drop off a rental with or without some microwave popcorn and some beverages. We have a couple of friends who took our entire family to the movies. It was an amazing gift to our family which we really appreciated.
  • Treat him or her to a spa day or a beauty treatment: manicure/pedicure, facial, makeup application, massage, etc. It may be the first time they’ve felt pampered in a while.
  • Arrange for a hairstylist to make a home visit to trim the entire family’s hair. This is something that’s often put on a back burner in the chaos of caregiving.

Ways you can help a caregiver

 

Here are some practical ways you can help a caregiver:

  • Call when you are en route to a store to see if you can pick anything up for him/her.
  • Say to the caregiver, “Give me a task.” It could be laundry or an errand like picking up groceries. Often, a patient will refuse the help that a caregiver greatly needs. Let them know that you can be in and out. No socializing needed (unless they would like some).
  • Offer to clean one room of their house. Bring dusting polish, window cleaner, etc., so that you can get right down to work. He or she may want to participate. Many hands make light work and you can chat while you get the job done. Your help will be greatly appreciated.
  • Offer to wash/fold laundry.
  • Wash and clean the car.
  • Help with seasonal tasks like cleaning gutters, raking leaves and shoveling.

    Facing Cancer as a Friend is available on Amazon.com.

Here are ways you can help a caregiver financially:

  • Donate money or vacation time to cover paid-time-off hours for the caregiver (some employers allow this).
  • Donate air miles so that they can take a trip or a family member from far away, with limited resources, can visit.

You can help a caregiver, spiritually, too:

  • If you are a praying person, pray for the caregiver and any children the patient has. Tell the caregiver that they are in your prayers. It can make a big difference, especially if they are a Christian.

 

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

 

Originally posted 2018-05-07 07:00:34.


Scanxiety

There’s a word that’s unique to the cancer experience. Scanxiety. Most people are familiar with anxiety. There are many types of anxiety, including (but not limited to): generalized anxiety disorder, social anxiety, phobias, and PTSD (post-traumatic stress syndrome).

Scanxiety is a form of situational anxiety or acute stress reaction disorder.

Because of the nature of cancer, patients are already experiencing chronic stress, or the stress of demands that seem endless, with little hope in sight for long stretches of time. When you add an additional stressor to this, it can feel overwhelming, leading to physical symptoms of stress and anxiety for the patient, and his or her family members.

The first time you experience scanxiety is when you suspect you have cancer and are in the process of having it diagnosed—or ruled out as a concern.

Our Story

When Dan felt hard, enlarged lymph nodes, just above his left collarbone, we knew something was wrong. The soonest the doctor could see him was three days later. During that time, we looked at all the possibilities, and the most likely cause of his symptoms was cancer.

Upon examining him, the doctor said, “I can’t tell you exactly what it is, but I can tell you that it’s serious.”

It’s cancer. How bad is it? I didn’t dare say what I was thinking, out loud, in that office.

“Do you have any plans this afternoon? Can you stay for more tests?”

Of course, we stayed. Dan was shuffled from one place to the next. The lab, the room where they performed an ultrasound, the x-ray department. Then, we waited. That was our first dose of scanxiety. Within the next two weeks, we would experience scanxiety as we awaited results from CT scans, MRI’s, and a PET scan.  Each test would add a little more information to Dan’s medical chart. Combined, we would learn the full scope of what we were looking at.

What scanxiety feels like:

When scanxiety hits, you experience many of the symptoms of acute stress (1):

  • Emotional distress — some combination of anger or irritability, anxiety and depression, the three stress emotions.
  • Muscular problems including a tension headache, back pain, jaw pain and the muscular tensions that lead to pulled muscles and tendon and ligament problems.
  • Stomach, gut and bowel problems such as heartburn, acid stomach, flatulence, diarrhea, constipation, and irritable bowel syndrome.
  • Transient over-arousal leads to an elevation in blood pressure, rapid heartbeat, sweaty palms, heart palpitations, dizziness, migraine headaches, cold hands or feet, shortness of breath and chest pain.
lung cancer awareness
Image courtesy of stockdevil at FreeDigitalPhotos.net

You’re focused on one thing:

…the pending results of a scan.

Those results will affect your life to a degree that is difficult for most people to comprehend. Scans can trigger a lot of emotions. If cancer has been growing and you’ve started a new treatment, you might feel hope and anticipation. “Is the treatment working?”

Ironically, if things have been stable, fear and anxiety can rear their ugly heads. The thought of recurrence is lurking in the back of your mind. “What if the cancer is back? I had a cough last week.”

Oh, yeah. That’s right. I’m on a limited timetable here.

Once diagnosed, many people experience scanxiety again each time they have a CT scan, x-ray, MRI, bone scan, or any other imaging test that will shed some light on whether the cancer is being effectively treated or whether it is progressing. You can’t help but focus on the things that you’ve pushed to the back of your mind. Every scan is a step back into reality.

How long do I have, Doc?

From the results, you learn what your prognosis is. The doctor tells you what your treatment options are. You make decisions. You decide on your treatment plan and wonder how you’ll proceed with the rest of your life.

  • Do you continue to work—can you continue to work?
  • Do you put down the deposit on your annual family vacation?
  • What minor or major life changes will happen as a result of what we learn from the next scan?
  • Will the next scan be the beginning of the end?
  • Will I be able to continue to live as I have been?
  • Is cancer in a new place? What can I expect?

The feeling of a good scan is amazing.

You have a 3-month extension on life. It feels like you’ve been strapped into the electric chair and the governor called.

I’m writing about scanxiety today because this Monday, my husband, Dan will be having two different kinds of scans: a brain MRI, an upper body/chest CT scan. So, we are experiencing scanxiety. If you are a person who prays, it would mean a lot to me if you would keep Dan and our family in your prayers, not only for his health but for our peace of mind, as well. He will find out the results of those scans a few days later when he meets with his oncologist. The days leading up to the scans and following, while we await the results, are difficult ones.

There are ways to manage scanxiety.

The National Institute of Mental Health gives the following suggestions for dealing with stress (2). These can be applied to scanxiety as well.

The effects of stress tend to build up over time. Taking practical steps to manage your stress can reduce or prevent these effects. The following are some tips that may help you to cope with stress:

  • Recognize the Signs of your body’s response to stress, such as difficulty sleeping, increased alcohol and other substance use, being easily angered, feeling depressed, and having low energy.
  • Talk to Your Doctor or Health Care Provider. Get proper health care for existing or new health problems.
  • Get Regular Exercise. Just 30 minutes per day of walking can help boost your mood and reduce stress.
  • Try a Relaxing Activity. Explore stress coping programs, which may incorporate meditation, yoga, tai chi, or other gentle exercises. For some stress-related conditions, these approaches are used in addition to other forms of treatment. Schedule regular times for these and other healthy and relaxing activities. Learn more about these techniques on the National Center for Complementary and Integrative Health (NCCIH) website at (www.nccih.nih.gov/health/stress ).
  • Set Goals and Priorities. Decide what must get done and what can wait, and learn to say no to new tasks if they are putting you into overload. Note what you have accomplished at the end of the day, not what you have been unable to do.
  • Stay Connected with people who can provide emotional and other support. To reduce stress, ask for help from friends, family, and community or religious organizations.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family

Footnotes:

https://www.nimh.nih.gov/health/publications/stress/index.shtml

Originally posted 2018-08-27 07:00:17.


Grieving During the Holidays

While the holidays are meant to be a time of joy and family gatherings, when you are faced with cancer, there is a real mixture of emotions that come at this time of year. That’s because whether you or a loved one currently has cancer, or you’ve lost someone close to the disease you will feel the full effects of grieving during the holidays.

Our Story

We discovered my husband’s stage IV lung cancer at the end of October, just a couple of days before our 3rd wedding anniversary, a couple of weeks before his 52nd birthday, 3 weeks before Thanksgiving, 2 months before Christmas, and then 2013, the year he would statistically die.  In 2 months’ time, we trudged through all of these days that we would normally celebrate. Yet, we didn’t feel like celebrating. Without saying it out loud, each member of our family wondered if this would be the last time we had together on any of those occasions.

Our daughter, Summer, described it as feeling like everything had to be perfect since it could be the last. Of course, nothing is ever perfect, least of all family get-togethers. This can lead to frustration and disappointment, which are really due to the underlying emotions of grief.

Grief Amplified

Grief during the holidays is like that of other times of the year except amplified. While everyone else is getting into the holiday spirit, you may feel more alone than ever. Sometimes this is because you’ve lost someone you love. Sometimes it’s because you’ve lost the way things used to be and no one seems to understand.

Don’t Worry About “Getting Over It”

All too often, people feel the need to “get over it”, so that they don’t ruin the day. It’s important to allow yourself to feel these emotions, even on special occasions. This means taking some time. You may want to journal about your feelings. If you are grieving during the holidays, the loss of a loved one, you might want to get together with a friend or family member who would like to share memories of your loved one.

Set Limits

It’s not only okay but also important to set limits. If you have always had Christmas at your home, see if you could join someone else’s holiday meal. Sometimes a change in setting can be helpful for eliminating the disappointment that the traditions in your home are changing.

Grieving During the Holidays

During the holidays of 2012, even though my husband was still alive, everyone in our home was still grieving. During that first year, things were made even more difficult by the new revelations about his health that were coming in with each new test result and doctor’s appointment. We were on a steep learning curve as we adjusted to his new treatment and its side effects. Those closest to us were in pain as well, while folks on the periphery of our lives sometimes said insensitive things in their attempts to encourage us.

I’ve also spoken to many widows who have told me that the 2nd year was actually harder than the 1st after losing their spouse. That’s because so many kind people were there for them the first Christmas they experienced as a widow. The 2nd Christmas, many people assumed that things were okay. There is no time clock for grief.

When You Have Young Children

If you have children, it’s important to talk to them about their expectations and concerns when it comes to special occasions. They are grieving as well. Eliminating longstanding traditions altogether can be very painful for them and isn’t necessary. In fact, this time of year can be a time for them to work through the feelings they may have but haven’t spoken aloud.

It’s important that your children know that it’s okay to cry and it’s also okay to laugh, even while you are grieving. They will learn this best by seeing what you do. Special occasions are a time for remembrances and for new traditions. A mixture of both will help you as you navigate the waters of grieving during the holidays.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

 


Zero in on Self-Care

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is Z for Zero in on Self-Care

I’m not going to give you a laundry list of self-care ideas. There are enough of those on the web. I do want to talk about how address all of your needs using the ideas that you decide are for you. You are a whole being with many parts. The key to ideal self-care is to make sure you balance these parts.

Emotional Self-Care

Keeping a close eye on how you are doing emotionally is essential as a caregiver. It can be so easy to burn out and end up feeling overwhelmed and depressed. It’s a good idea to develop a relationship with a therapist early on in your caregiving role. A therapist can help you navigate the emotional icebergs that threaten to sink caregivers. They can be a listening ear with whom you can openly share your deepest fears and failures.

  • Allow yourself to cry.
  • Getting angry is also okay. A non-destructive way of expressing this (and any emotion) is through journaling.
  • It’s okay (and even essential) to laugh.

Physical Self-CarePhysical Self-Care

Pay attention to any health issues YOU have. SO often, we are taking such good care of others that we neglect ourselves. That can lead to disastrous effects. You need to stay healthy to be there for your family.

  • Make sure to include a healthy diet in your daily routine. This will fuel you with good stuff, rather than junk, giving you the energy to get through difficult days.
  • Include moderate exercise as a regular part of your life. You may not be able to fit this into every day, but if you examine your days with a creative outlook, you will be able to sneak activity in, and you will feel better for it.
  • Get a good night’s sleep!
  • Avoid unhealthy habits like smoking, alcohol and illicit drug use.

Intellectual Self-Care

  • It’s important to keep your mind sharp.
  • This could include puzzles and games.
  • Reading is a great way to stretch your intellect, and you could read about anything that interests you.
  • There are tons of free online classes.

Social Self-Care

As social beings, we crave connection—even introverts like me! How we get that connection will vary from one person to the next. It’s important to get your social needs filled in a way that fits your needs. That might be going out for coffee with one friend, or going to a big gathering of friends that lasts for hours.

For some people, limiting your social dance card can be just as essential to self-care. Introverts tend to be more drained by people than extroverts are. Listen to your body to prevent becoming burned out by too much of a good thing.

Professional Self-Care

Many caregivers have to juggle their role as a caregiver with their career. Like self-care, how you approach this will depend a great deal on how you view your job as a priority. Is it just a way to pay the bills? Do you look at your job as part of a long-term career path that needs to be nurtured? The way you answer these questions will help you decide how to handle your professional life. The more you value maintaining your professional path, the more you will need to rely on help from others to ensure you can give it the attention it needs.

  • You may choose to change jobs to one that is more flexible or take a leave of absence.
  • Your job may be a welcomed escape from caregiving.
  • Finances might dictate how you handle your professional life.
  • Know your rights. Take advantage of things like the Family Medical Leave Act.

Spiritual Self-Care

Your spiritual life should be the core of your self-care. It is what directs your value system and gives you a sense of identity. This is true, even if you don’t think you have a spiritual life. A great starting point is to determine if there are any gaps between your spiritual values and the way you are carrying them out in your life.

Find a spiritual mentor. This doesn’t have to be something formal, but you should know who you look up to and why. Consider what it is about them that you respect. Over time, establish a relationship with them so that you have someone to turn to when you have questions about God or how you should handle different situations.

Nurture your spiritual life. It can be easy to skip church and let your prayer life lapse. Going deeper will unearth amazing rewards long-term in your spiritual life.

Spiritual Self-Care

 

How to Zero in on Self-Care

Regularly check in with yourself to see what areas of your life need nurturing. Make sure you aren’t putting all of your eggs in one basket, either. Trust your intuition and pay attention to any areas that are lacking.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-30 07:00:20.


When someone is diagnosed with cancer, naturally, the primary concern on everyone’s mind is the patient. As time goes on, the patient’s primary caregiver often begins to experience caregiver burnout.  Thankfully, there are people who take on the task of caring for the caregiver. They are angels in disguise. This series comes from chapter 10 of my book, Facing Cancer as a Friend: How to Support Someone who has Cancer. Facing Cancer as a Friend is available on Amazon.com in paperback and Kindle formats.

The Value of a Caregiver: Priceless

An estimated 44 million Americans ages 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.1

The value of this unpaid labor force is estimated to be at least $306 billion annually,2 nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion).3

In most cases, the primary caregiver is a spouse, partner, or an adult child. If a patient doesn’t have family nearby, close friends, co-workers, or neighbors sometimes fill this role.

Good, reliable caregiver support is crucial to the physical and emotional well-being of people with cancer.

Who Cares for the Caregiver?

Often, caregivers spend so much time taking care of the patient and the patient’s responsibilities that they forget to take care of themselves, resulting in caregiver burnout. It’s often difficult for them to fit exercise into their schedule. Eating well takes a back seat. It’s common for a caregiver to feel guilty if they take the time to pursue a hobby or just take time for themselves on a regular basis.

Many caregivers have a positive experience. They feel a sense of accomplishment and even joy at being able to help someone they love. Even with the benefits that can come from being a caregiver, many caregivers experience caregiver burnout and stress.

Signs and Symptoms of Caregiver Burnout:

  • Feeling overwhelmed
  • Feeling alone, isolated, or deserted by others
  • Sleeping too much or too little
  • Gaining or losing a lot of weight
  • Feeling tired most of the time
  • Losing interest in activities you used to enjoy
  • Becoming easily irritated or angered
  • Feeling worried or sad often
  • Frequent headaches or body aches

Some of the Ways Caregiver Burnout and Stress Affect Caregivers:

  • Depression and anxiety. Women who are caregivers are more likely than men to develop symptoms of anxiety and depression. Anxiety and depression also raise your risk for other health problems, such as heart disease and stroke.
  • Weakened immune system. Stressed caregivers may have weaker immune systems than non-caregivers and spend more days sick with the cold or flu. A weak immune system can also make vaccines such as flu shots less effective. Also, it may take longer to recover from surgery.
  • Stress causes weight gain more often in women than in men. Obesity raises your risk for other health problems, including heart disease, stroke, and diabetes.
  • Higher risk for chronic diseases. High levels of stress, especially when combined with depression, can raise your risk for health problems, such as heart disease, cancer, diabetes, or arthritis.
  • Problems with short-term memory or paying attention. In particular, caregivers of spouses with Alzheimer’s disease are at higher risk for problems with short-term memory and focusing.4

Next Time…

The next post in the “Who Cares for the Caregiver,” series will give you plenty of ideas for how to help someone who is caring for a loved one facing a cancer diagnosis or any other critical illness or trial. Be sure to sign up to be notified when I publish my weekly blog post, and for the Heather Erickson Author/Writer/Speaker Newsletter. I’d greatly appreciate it if you shared this blog on your social media so that others can learn how to support those facing cancer.

Now Available!!

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family

Footnotes:

1 National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Washington, DC: Author.

2 National Family Caregivers Association & Family Caregiver Alliance (2006). Prevalence, Hours and Economic Value of Family Caregiving, Updated State-by-State Analysis of 2004 National Estimates (by Peter S. Arno, Ph.D.). Kensington, MD: NFCA & San Francisco, CA: FCA.

3 Arno, P.S. (2006). Economic Value of Informal Caregiving: 2004. Presented at the Care Coordination & the Caregiver Forum, Department of Veterans Affairs, January 25-27, 2006.

4 http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html

Originally posted 2018-08-20 07:00:05.


Complimenting a cancer patient

“You look so good!” Who wouldn’t want to hear those words? There are times when complimenting a cancer patient doesn’t make them feel good. Disclaimer: Don’t feel one bit bad if you have ever done this. Read to the end to find out why.

Cancer is an illness associated with appearance changes. So, it often surprises people when a friend who’s undergoing cancer treatment doesn’t look like death warmed over. After all, look at the long list of changes that cancer can bring to a patient’s appearance:

  • Hair loss (including eyebrows, lashes and body hair)
  • Weight loss
  • Weight gain from steroids
  • Changes in skin color and texture
  • Changes in the finger and toenails
  • Changes in eyes
  • Rashes/Acne
  • Mouth Sores
  • Bruising due to low platelets
  • Changes due to surgery
  • Fatigue that will make a patient visibly tired

When complimenting a cancer patient…

Know that your friend may wonder if you realize just how bad they actually feel.

It’s even more difficult to look like “your old self” when you’ve been dealing with pain and nausea.

Sometimes, “You look so good,” doesn’t sound like thoughtful encouragement to a cancer patient. There are several reasons for this.

Susan* often gets anxious when preparing to go out in public. Her friends often compliment her beauty, trying to encourage her. And, she is beautiful. Susan often wonders if her friends understand how serious her illness is. She wants to feel, “normal,” and does all she can to look their best when she leaves the house or has a visitor. Yet, she still wants to feel like people know what she’s going through.

When people see a cancer patient, it’s usually on their very best days.

Whenever Ron* goes to church he makes sure to have rested the day before. He fights the pain he experiences every day, just getting out of bed. He chooses his most flattering suit and applies some makeup to cover the redness the treatment has caused his complexion. Then, he gives social interaction every bit of energy he’s got, in an effort to be a “regular” person.

After all of that, he goes home and spends the next 2 days trying to recover. There, he can recuperate for the next outing. Most people will never know what it took for Ron just to get out of bed and face the world. When he’s given a well-intended compliment, he often thinks “If only you knew.”

Metastatic/stage IV cancer patients (and their loved ones)

Often patients who have life-threatening cancer wonder if their friends don’t understand how life-threatening their illness is. Although the patient may look great on the outside, they know that in fact, they’re dying on the inside.

When my husband was diagnosed with stage IV lung cancer, he never even had a cough to indicate there might be a problem. Looks can be very deceiving when it comes to cancer.

“What are you really saying?”

Andrea* feels nauseated much of the time and is so aware of the physical changes in her body. It’s hard for her to believe that anyone actually thinks she looks healthy, which is really how she wants to look–and feel. When she’s told she looks good, Andrea often wonders, “Do I really, or do I just look good—for a cancer patient?”

Often people who can pull off looking well, despite their illness, are mistaken for being cured, or no longer on treatment. Part of the phenomena is advancements in treatment. Targeted, or precision therapy and immunotherapy usually spare the patient’s hair, the once, tell-tale sign that someone is a cancer patient. There are also more medications to help patients try to deal with the side effects of their treatment.

How to Handle Complimenting a Cancer Patient

So, how should you handle complimenting a cancer patient when there are so many different opinions on this? Many people with cancer don’t feel sensitive about compliments and welcome them wholeheartedly. However, many do, and they aren’t likely to tell you. So, the best way to approach this is to not comment on their appearance. Instead, ask your friend, “How are you feeling?” Then, LISTEN. This allows them to tell you what’s really happening with them rather than getting labeled based on their appearance. It also lets them feel heard by someone who cares enough to ask.

And if you slip up, out of habit, it’s okay. Anything rooted in well-meaning kindness is a good thing.

So, back to that disclaimer.

What if you’ve ever told a friend who has cancer that they look good in the past? Don’t feel bad about complimenting a cancer patient. You can’t go back and change the past. You meant well, right? And chances are, they appreciated your kind words.

*Note: Names have been changed to protect privacy.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker


Every October I try to predict peak color in the deciduous trees. Then I head off to the woods in St. Francis, Minnesota to spend a few days at Pacem in Terris (Latin for “Peace on Earth”). This year, I went at the perfect time. Taking a break is something everyone should do. Sometimes you may need it more than others. I found that the harder it is to make time in your schedule, the more important taking a break is.

Get beyond the guilt of taking a break.

Taking a break in my hermitage

This can be hard for caregivers. You spend all of your time trying to maintain control. Walking away for a few days means giving up the reigns to someone else. You may worry about how your family will fare without you. You might even harbor subconscious concerns that they can get along just fine without you and that maybe you aren’t as important as you thought.

The good news is that they can get along. When you come back from taking a break, refreshed and renewed, you will find that your family missed you and is very glad to have you home. That level of appreciation feels pretty good.

Taking a break means taking care of yourself.

As a caregiver, you need to take care of your own health and well being, too. The first step to doing that is to gain awareness of how you’re doing. otherwise, you can be so busy caring for your family that you don’t realize YOUR energy reserves are down to nothing.

Quiet restores your soul.

The hermitage I visit each October is a place of silence. Sometimes the silence is hard for people to get used to. You may spend the first day checking the time, thinking about your usual routine obligations. I actually put the clock in the closet and go to sleep before I do anything. The founder of the hermitage once told me that sleep can be the most important thing you accomplish. Your body and mind heal as you sleep. Interestingly, you burn more calories as you sleep deeply because of how many your brain consumes during that time.

Spending time with God renews you.

Taking a break to hear from God

In the hustle and bustle of caregiving, it’s easy to push God to the side. It is likely that this is the time you most need to hear His voice. Taking a break from the work of caregiving allows you the time to stop and listen. How to best accomplish this will depend on you.

Do you learn best by reading? Read the Bible, other spiritual writing, or even a secular book that speaks to you and what you’re going through.

Does being in nature help you feel refreshed and closer to god? Take a walk. A Stanford Study has shown that taking a walk improves creativity. it gives you clarity of mind that will help you to better see who you are and what you need. You can return from this mini-retreat inspired. You may even have some ideas of how to do things differently in your caregiving journey.

Do you like to pray? I hope so. This is a wonderful way to invite God to speak to you and give you clarity. It can be as simple as saying, “Lord, I really need to know your will in this situation. Please open my eyes to see and my ears to hear what you want me to do/know.” The (and this is key) LISTEN. I simply sit in the silence. Sometimes, I even fall asleep and have inspiring dreams during these times.

You don’t have to go away for days.

Even a few hours of leaving home to get a massage, have coffee with a friend, or take a walk in a local park can refresh you. Find what works for your needs and lifestyle. Don’t be afraid to try something different. You may just find a new way of renewing yourself so that when you return to caregiving, you feel better than ever about what you are doing.

Sometimes it’s good to take a “digital break.”

That’s what I’m going to be doing in the month of January. I’ve noticed that I’m not getting as much writing done as I should be, so rather than spending time on email, social media, and other online activities, I will be writing and reconnecting with my goals for 2018. You will still see weekly blog posts on Facing Cancer with Grace, because I have already written them and will post them automatically, using a scheduler. Even though I may not respond to your comments right away, I will read them and appreciate them greatly. Since I won’t be sharing my posts to social media in January I would appreciate it if those of you who use social media would share my posts. Thank you!

What are YOUR thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family, Photo by Everbranch Photography

Originally posted 2018-01-01 07:00:20.


Young Adult Caregivers

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is E is for Exercise Increases Creativity.

Young adults, ages 18-26 take a close second to infants, when it comes to being overlooked and under-supported, as they live with a parent’s cancer diagnosis. To drop them off the radar when they turn 18 is really a disservice to them. Even though their emotional and physical growth has slowed down, having an adult body does not always mean being grown-up. Children continue to develop emotionally and neurologically until they are twenty-six years old. It’s shocking when you consider that many children of cancer patients are also young adult caregivers.

Ages 18-26

The stage of emerging from adolescence to adulthood can be a complex yet exciting time of growth. Young adults are focusing on themselves, their education, career, marriage, and sexuality. Finding out that a parent has cancer during this time can be a huge shock to an eighteen to twenty-six-year-old, especially if they are thrust into the role of a caregiver. They’ve barely finished high school, and have all sorts of plans for their life. They may be transitioning to college.

Young Adult Caregivers in College

Young adults comprise 12–18% of adult caregivers, and the average age of a young adult caregiver is 21 years old.  Many young adult caregivers are attending college. Research has found that caregiving by college students has been associated with:

  • Greater difficulty transitioning to college,
  • Less social interaction
  • Higher levels of stress and depression
  • Stress due to inexperience in fulfilling caregiver duties

Often they have to change what school they were going to attend, take time off, or completely quit college because of their parent’s illness. Their mind (and often their time) is so focused on caring for their parent with cancer that it’s difficult to give school or their job their full attention and effort.

Young Adult Caregivers

Just getting on their feet

Young adults Caregivers are thinking about starting their career, and sometimes of getting married. Everything they looked forward to is on hold so that they can do the right thing. They may go from being a child to being a caregiver—and they are not yet done developing. They might feel a sense of isolation within their peer groups because it is difficult for their friends to understand what they are going through. Since young adults have a strong need for community, this can leave them feeling very alone. Support can be the difference between young adult caregivers who prosper and those who will struggle.

Helpful Tips for Young Adult Caregivers

  • Seek out guidance and support.
  • Don’t be discouraged when you make mistakes. That is one of the ways you will learn.
  • Find positive role models.
  • If you are starting, or are already in college, make an appointment with your academic counselor to discuss a plan in case the patient’s health begins to impact your grades.
  • If your loved one’s cancer is terminal, address the possibility of them dying during their time at the school.
  • Talk with your financial aid adviser to see how any scholarship or loans will be affected by a hiatus of 6 months to a year, in case you need to take some time off.
  • Check in with your school’s mental health adviser. Even if you are handling things well now, it’s a good idea to know who you can reach out to if things change and you need extra support.
  • Many employers offer mental health services. Set up an appointment with a therapist through your medical insurance plan.
  • You might need to try out more than one in order to find someone who you connect with.

It’s important to get the support you need to get through this time. Remember, you’re not alone, there are therapists, counselors, and even online and community support groups to help you through this.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-28 07:00:13.

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