Category Archives: Caregivers


survive the holidays

Surviving the holidays can be difficult when you or someone you love is literally trying to survive the holidays. This almost always means the celebration will look different. I’ve put together a few thoughts and tips to give you a leg up.

To survive the holidays you must first accept that things will be different.

You won’t be participating in the cookie exchange or Christmas caroling. Things that were once fun, are in this new reality, exhausting. Even if you do have the energy to do them, they may zap your reserves so that you’re left burned out. One of the best things you can do is to recognize that the holidays will look different this year—maybe from now on. That’s okay. Change is a part of life even when cancer isn’t. It stinks that cancer is the reason for this change, but accepting it will make the holidays much easier to enjoy.

To survive the holidays you must prioritize

On your quest to survive the holidays this year, make a list of everything you would like to do. This puts it all in one place. Now, pull out your calendar. Get a good grasp on what you are already obligated to do in the next month. Is there anything you can cancel?

What can you add? Don’t add it yet. Just get the vision of what you have to work with in regards to your time. Think about how you feel at the end of each day. Some people still have plenty of energy and others are ready to drop by 6 PM. With all of that in mind, look at that list of things you want to add to your schedule. What can you cut? What should stay? Do the things that you want to keep as part of your holidays fit into your schedule? If so, add them to your calendar.

Also, are there things that don’t feed your soul? This is the year to drop them. You don’t have to put up the lights on the outside of your house this year. You can go for a drive through a neighborhood with especially nice lights to get the twinkle in. A couple of years ago we bought an artificial tree during a great sale. I had always balked at the idea of an artificial tree, but it was getting too hard to deal with a real one each year. We even bought scented sticks that make the tree smell real. Now, we get just as excited setting up our tree as we ever did a real one. This has simplified life.

To survive the holidays, get help

Are there things you can delegate this month? Can a friend take your kids caroling? Can you ask your children to decorate the tree this year (if they are old enough)? Shop online, rather than hitting the stores. All of these things will reduce the amount of energy you have to expand.

Where will the family celebrate?

Often, it’s difficult to go out of town for the holidays when someone in your family has cancer. This might mean having family come to you. That doesn’t mean the work should come to you. If you choose this option, let everyone know that you will need their help. Make sure everyone knows that you can’t have people stay at your house at this time.

Survive the Holidays

What about the meal?

Make a list of thing you need help with, including what you would like for meal items. One way of doing this is to take care of the turkey and ask visitors to bring a side item. A couple of people can bring pies. Even if guests are coming from out of town, they can pick up prebaked pies and sides from the local store. Some people avoid cooking altogether by having the meal catered. In order to organize this, use a mass email or an app like Facebook Messenger to delegate menu items. Have someone bring plastic plates and utensils so there’s minimal clean-up.

If you are going to survive the holidays you have to be honest

Family and friends often have a hard time getting used to the fact that you are dealing with cancer. It can be difficult for them to envision how much this affects your life. This is especially true if the patient is able to carry on as if they are fine, even if it is with great difficulty. This amazing acting job can bite you in the end. Let everyone know that even though it will be harder than usual, you still want to celebrate. You just need some help to make that possible. Hopefully, they will be more than happy to help.

Answer the question

People will ask if there is anything you need help with. So often we say, “No, but thank you for asking.” Why do we do this? They wouldn’t ask if they didn’t want to help. Be prepared to answer the question. Have a list of things you need to have done, ready. What can be delegated?

Know when you need to say “no” so you can survive the holidays.

Are you tired? Lay down. The party can carry on while you rest. Remember to budget your time and space. Have a room that’s just for you. This is important when you go visiting, also. Ask the host if they have a spare room where you can lay down if you need to. Discuss this with them ahead of time so they can be prepared.

Make Memories

This year you can do more than survive the holidays. You can thrive during this festive season. Take lots of pictures and video. Embrace the joy and even the sad feelings that come with this time of year. Be there for one another and give thanks for the good things. Be gentle with one another—and yourself.

What is one thing you plan on doing differently this year? Please share in the comments.

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


Sleep

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 S for Sleep Problems when You’re a Caregiver.

I’ve always been a nighttime person. I used to blame it on working the night shift as a nursing assistant when I was younger, but my night owl habits go back even further than that. Still, I was always able to get enough sleep. Then my husband was diagnosed with cancer and that changed. In the early days, when we were waiting for test results to come back, I laid awake staring at the ceiling, wondering what the future would hold. When we knew it was cancer, grief set in, making it impossible to relax.

The Effects of Electronics on Sleep

I filled the quiet, nighttime hours with books and video games that I could really immerse myself into so I wouldn’t have to think about my own life. All of this was understandable. It was even okay for a little while, but it didn’t change anything—except my sleep habits. Blue light made falling asleep even more difficult than it had been before.

It can be difficult to forgo electronics in the evening. If you can’t shut them down early, you can at least minimize their impact on your ability to sleep by using a blue light filter. I highly recommend a free one called f.lux. I used it and it has helped me tremendously. You can even try different filters and color schemes to see what works best for you. You can download it for free HERE.

Eventually, I did a digital detox and it really improved the quality and the quantity of my sleep. You can read about it on my website, Heather Erickson Author/Writer/Speaker.

Sleep

His Side Effects Affected My Sleep

Then Dan began treatment, and we had to adjust to the side effects and how they affected our sleep. Yes, I said “OUR sleep.” He had terrible night sweats, early on. When he woke up and went to the kitchen or the bathroom. I would jump out of bed and quickly strip the sweat-soaked sheets off, and replace them with dry ones before he returned. By then, I was wide awake from the rapid sheet-change and I would have to try to fall asleep, all over again. This often happened 2-3 times each night. There were also nightmares that woke Dan with a start, and me along with him. He had nights of tremendous pain. Later, he had trouble breathing and I couldn’t sleep for fear something would happen to him while my eyes were closed. It was all very irrational.

Sleepless in Minneapolis

With these poor sleep habits, my own pain levels skyrocketed. My patience plummeted. Eventually, I saw a sleep specialist who did a sleep study on me. He decided that I was in a difficult position as a caregiver and for that reason was suffering from insomnia. He said there really wasn’t much he could do about it other than give me a sleep aid, which came with its own set of issues. I said thanks but no thanks and went home.

There is Hope

There are things you can do to make getting sleep easier. Some of the best advice to be found is on a website called Tuck.com. It’s not likely that you will sleep the way you did before you became a caregiver, but getting a good night’s sleep whenever possible will help you cope with the daily pressures of caregiving—and life in general.

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 2018-04-21 07:00:56.


Progressive Muscle Relaxation

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 R is Relax : Progressive Muscle Relaxation

There’s a cycle you go through when you are under stress. Your muscles tense up, you get knots in your shoulders and a sore neck. Often these tight muscles cause you to get a tension headache. This only adds to your stress. By learning to relax your muscles, you can break the cycle, relieving tension and reducing stress. Progressive muscle relaxation takes a little bit of practice, but it is well worth the effort. It’s an extremely useful part of your relaxation routine. And it’s completely free.

Atmosphere helps Progressive Muscle Relaxation

Especially in the beginning, it is best to practice progressive muscle relaxation in a quiet, place of solitude. Make sure the temperature of the room you’re in is comfortable. Soothing instrumental music at a low volume as well as some candles can be very relaxing. Lie down on a comfortable surface such as a mattress or floor mat, or sit in a comfortable chair if lying down is impractical. Ensure that you won’t be interrupted. You could easily fall asleep by the time you’re done, so if you have someplace you need to be, set an alarm.

Get Comfortable

In the beginning, you will need to be prompted as to what you should do next. If you are comfortable, you can have a friend or spouse read the prompts. Or, you can record yourself reading them. Similar routines can be purchased or found online. It will only take doing the progressive muscle relaxation routine a couple of times.

Progressive muscle relaxation focuses on one group of muscles at a time. You will tighten each muscle and hold it for about 20 seconds before slowly releasing it. Concentrate on the releasing the tension slowly. As you do, focus on the sensation of relaxation. You will begin with your facial muscles, and then work down the body, one muscle group at a time until you reach your toes.

The entire routine should take about 15 minutes. Practice it once to two times a day. Once you have completed the routine, you can either go about the rest of your day, refreshed and renewed, or you can take a nap. It’s a great way to relax before falling asleep at night.

Progressive muscle relaxation

Progressive muscle relaxation script.

If you are recording this or having someone read it to you, it should be done in a soothing voice. Allow about 20 seconds to pass after the instruction to “hold,” before moving on to the instruction to “relax.”

  1. Start by relaxing your face. Let the stress of the day melt like wax until it each part of your face is completely free of tension. Begin with your forehead Wrinkle your forehead and then raise your eyebrows. Hold; then relax.
  2. Now Close your eyes tightly. Hold; then relax.
  3. Wrinkle your nose and flare your nostrils. Hold; then relax.
  4. Push your tongue firmly against the roof of your mouth. Hold; then relax.
  5. Scrunch your face. Grimace. Hold; then relax.
  6. Clench your jaws. Hold; then relax.
  7. Now move down to the neck. Tense it by pulling your chin down to your chest. Hold; then relax.
  8. Squeeze your shoulders up to your earlobes. Hold; then relax
  9. Tense your biceps. Hold; then relax.
  10. Tense your forearms and clench your fists. Hold; then relax.
  11. Arch your back. Hold; then relax.
  12. Expand your chest. Breathe in as deeply as you can. Hold; release the breathe slowly and then relax.
  13. Tense your abdominal muscles. Hold; then relax.
  14. Next, tense your buttocks and thigh muscles. Hold; then relax.
  15. Tense your calves pointing your toes. Hold; then relax.
  16. Flex and pull your toes up as if trying to make them touch your knees. Hold; then relax.
  17. Now mentally scan your entire body for any area that doesn’t feel completely relaxed. Without moving or tightening any muscles, imagine the tension being released even further.

Benefits for Caregivers

By relaxing in this way, you can reduce stress, tension, and even pain. This is important as a caregiver because those things often affect our ability to function. The great thing about this is that once you learn this routine, you can use it anytime and anyplace (within reason). You can even do this in your car on a lunch break. Lean the car seat back and in 15 minutes, you are refreshed and ready to go again.

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 2018-04-20 07:00:47.


Quality of Life

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 Q for Quality of Life

People often talk about quality of life when it comes to health concerns. Decisions about treatment must take quality of life into account. Patients often decide to discontinue cancer treatment based on concerns about quality of life. What is quality of life? Is there a set standard for it? In today’s A to Z post, I propose that each person has their own standard–and often their perception of what constitutes quality of life will change.

Quality of Life in an Iron Lung

In 2007, I say a news report about the company that made the replacement parts for the iron lung. They were no longer going to make the parts. The newsman interviewed Dianne Odell, a woman who had spent 60 years of her life in the 7-foot long tube that kept her breathing. She had lived a full, and (to her) a wonderful life, despite being confined to the iron lung.

She died a year later after a power outage. People around the world mourned. I did, too. Even now, all these years later, I have tears in my eyes as I write this. Her life made an impact. I would recommend looking her story up on the internet.

Often when someone is enduring something that is way out of our comfort zone, we say, “I could never handle that.” The truth is that you don’t know what you can handle until you have to. Life in an iron lung is something that I could never have imagined. So I was stunned when I learned that many people lived fulfilling lives in an iron lung.

“It feels wonderful, actually, if you’re not breathing well. When I was first put into it, it was such a relief. It makes all the difference when you’re not breathing,” says Martha Ann Lillard, another woman who lived most of her life in an iron lung. (1)

Quality of Life
By Photo Credit: Content Providers(s): CDC , via Wikimedia Commons

Quality of Life with Cancer

Our lives changed dramatically when my husband, Dan found out he had cancer.  Since then, Dan has gone through dramatic changes in his health many times. With every new treatment came new side effects. They were extremely hard to cope with. Beyond the short-term side effects, Dan also experienced long-term changes to the quality of his life.

Yet, through all of this, we continue to live life as fully as possible. It is more precious to us than ever. I asked Dan about his thoughts on this.

“I’m satisfied with less. My quality of life has maybe diminished, but I still have a purpose. It’s harder to do the things I want to do because of pain and nausea. I’ve lowered my expectations and made peace with the lower quality of life.” -Dan Erickson

We’ve experienced this dichotomy of holding so tightly to a life filled with pain and illness. We have made changes in our lives to accommodate the new normal.  For example, we maintain a fairly loose schedule in case Dan doesn’t feel up to doing something as planned. Our activities are usually pretty low-key. Thankfully, we’re both content with that. Perhaps the key to seeing the quality of your life lies in contentment.

I would love to hear your thoughts on 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

Footnote:

  1. Daily Mail UK ‘It feels wonderful, actually’: The polio survivor who has lived inside an iron lung for 60 YEARS. By Daily Mail Reporter |

Originally posted 2018-04-19 07:00:34.


Plan B

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 P for Plan B – A Change in Plans.

Vows

My husband, Dan and I were recently talking about the fact that most people don’t really believe their wedding vows. They are standing before the minister (or whoever they choose to officiate their wedding). There beside them is the person they love most in the world. Their friends and family may even be watching this moment. The bride and groom often have overcome a few hurdles to get to this point. From this time on, they will be moving forward and upward. At least, that’s what they think! They vow to have and to hold, for better or for worse, for richer or poorer, in sickness and in health, until death when they part. What they are really saying is “For better, for richer, in health, we will live.” Anything else is plan B.

Not what we planned

When I married my husband in 2009, we had all of the hopes and dreams that any newlywed couple has. It was the second marriage for both of us. We each had three children. His were grown and mine were still very young. The girls instantly thought of him as their dad, and he adopted them in January of 2012.

When you have all of your hopes and dreams suddenly ripped from your hands, it can be shocking. It’s easy to see why one of the first things people in this situation feel is denial. I remember thinking that there was no way Dan could have cancer. We’d already been through a lot prior to meeting each other, falling in love, and getting married. He had just adopted my daughters a year earlier. We made short-term mission trips a regular part of our lives. He was pastoring a church. God wouldn’t let this happen to us, right?

Then, test results start coming back.

Facing Plan B

Once you get beyond the shock and denial, you can begin to figure out what life is going to look like with cancer in the picture. This is plan B. It’s the best you can do with the worst situation. You take all of your assets, your support system, your medical team, finances, time, your skills, and your drive and arrange them like pieces on a chess board. You defend your king and try to think three moves ahead whenever possible.

Plan B requires flexibility

You always have to be willing to change your plans. Appointments can change with little or no notice. The way a cancer patient feels can change like the weather, only it’s less predictable. People you are counting on might have to back out at the last minute. When these changes happen you need to be ready to change, too. It requires emotional and mental flexibility as much as the ability to make these changes. You have to take it all in stride. Try not to get too discouraged. It’s bound to hit you, but don’t let it keep you down very long.

It isn’t the “booby prize

Recently my husband had to change treatments. He went from a very easy treatment with very few side effects to old-fashioned, hardcore chemo. As he was reading about this on some cancer forums, he came across an entry that said, “Don’t think of chemo as the booby prize. It works.” Right now, chemo is our plan B. Whether your plan B is life with cancer or a lousy treatment option, it isn’t the booby prize. It just might be what you need to get to the next, best thing.

Martin Luther King Jr.

“If a man is called to be a street sweeper, he should sweep streets even as a Michelangelo painted, or Beethoven composed music or Shakespeare wrote poetry. He should sweep streets so well that all the hosts of heaven and earth will pause to say, ‘Here lived a great street sweeper who did his job well.”

Someone played a recording of this speech by Dr. King, at a monthly caregiver group I attend. The man who played it told us to replace the word “street sweeper” with the word “caregiver.” Even the most difficult jobs can be done in such a glorious way. That doesn’t mean you have to be perfect. You just need to be dedicated.

Your Plan B Assignment.

Life with cancer is never the life you plan. The truth is, we can’t really count on life turning out as we plan. At some point, we end up facing plan B. When that happens, finding a way to accept plan B, and even see some of the blessings of it can bring you a lot of peace.

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 2018-04-18 07:00:33.


Snake Oil Salesman

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 O is for Oil as in Snake Oil Salesman. One thing that can be very frustrating for patients and caregivers to deal with is the snake oil salesman.

I should specify that I’m not talking about oils specifically, nor am I disparaging the use of oils such as aromatherapy oils, cannabis oil, or any other oils that can be used to complement your treatment plan.  Snake oil is a generic term that I’m using to describe anything that purports to be the “cure” for cancer, with no scientific proof to back it up. This might come in the form of capsules, oils, specific foods, diet plans and places where miracles take place. I have a problem with the pitch, as much as the product.

Try this snake oil

I can’t count the times that people have offered us some cure that will work for all ailments. This isn’t usually an issue when Dan is doing well and the treatment he’s on is working. The second we tell people that his treatment has stopped being effective, the snake oil salesmen bring out their wares. We get emails, instant messages, and visits. It’s overwhelming and potentially dangerous.

Dangerous? But it’s Natural!

Most of these “cures” are innocuous. They won’t hurt anything but your pocketbook. You should always run any supplement past your oncologist because there are some which are dangerous. One example is turmeric. I love turmeric. I use it to decrease inflammation as part of my treatment for rheumatoid arthritis. My doctor has put her stamp of approval on me using this supplement.

We spoke to Dan’s oncologist thinking that turmeric might help reduce his pain levels more naturally. That got a big veto for 2 reasons:

  • Dan is a hemophiliac.
  • He is on chemo which lowers his platelets.

Turmeric thins the blood, something that when combined with his condition and treatment could be very dangerous. That’s just one example of why it’s important to always check with your doctor about any supplements you are considering taking.

snake oil

It’s Not All Snake Oil

The medical community is embracing many remedies that were once on the fringe of medicine. The use of these complementary treatments in palliative care is one of the reasons the oncology field is on the forefront of this movement.

Some examples:

  • Aromatherapy oils can be very helpful in easing side effects such as nausea and even fatigue.
  • Cannabis-based medications (And cannabis, itself, in some states) is used to improve appetite in patients who are losing too much weight.
  • Acupuncture is also being used successfully to combat pain, insomnia and other symptoms and side effects.

Supplement—Not Replacement

While these complimentary treatments are a wonderful addition to a patient’s treatment regimen, they are not a replacement. One of the problems associated with “snake oil” is the idea that it’s all or nothing. This is a scary thing when someone encourages a friend to skip the cancer center in favor of a “Tijuana Clinic.”

Faith Alone

PraySometimes, people encourage patients to use faith as a replacement for traditional medicine.

“God will heal you, but only if you have enough faith to trust in Him and Him alone.”

This is a really dangerous path to go down. It‘s one thing if a patient feels strongly that this is what they need to do. It’s something else to advise someone to do this. Consider that if you are wrong, it will cost your friend their life. Those kinds of decisions need to be made by the patient through prayer and contemplation.

Under Pressure

Patients and their families are already under intense pressure. Often they are bombarded with these snake oil pitches at the time they are most vulnerable. The influx of advice usually comes in when they are newly diagnosed or have a recurrence of their cancer. This is no time to take advantage of their fragile state and add to the feelings of confusion and doubt. Sometimes the intentions behind the advice are pure. Many times the person promoting the snake oil will benefit financially. It can become difficult to weed one out from the other. A patient and his or her loved ones shouldn’t have to.

Educating the Public

Somehow we are expected to educate everyone who comes along and says, “I really don’t know anything about this but…” Only seriously ill people(and their loved ones) get that sort of cavalier advice. One may as well shove their hand into a bin full of assorted pills and say, “here,” handing the patient a fistful, “I don’t know what these do, but you can look into it.” It’s the same attitude.

Anxiety for Caregivers

Snake oil solutions can cause a lot of anxiety of caregivers. Every time some new miracle cure is pedaled to my husband I worry whether or not he will succumb to the temptation to chuck the treatment he’s on and take the next flight to Mexico. We have vigilantly vetted everything he has done to combat his cancer. I think that’s helped him live as long as he has. No one has as big a stake in his survival as I do. We were supposed to grow old together.

The Right Way to Do It

I will never forget the time we got a phone call from a dear friend. He wanted to meet up with my husband to “give him something.” This instantly set off the bells and whistles that he was going to try to sell him on a “cure.” Instead, he prayed with my husband and gave him a mouthwash. He had read on Dan’s Caring Bridge that he was struggling with some terrible mouth sores. Nothing seemed to work. It was painful to eat, drink, and even talk. This friend not only recommended something, he gave him a bottle. Boy, did it work! It cut the healing time in half and immediately brought pain relief to Dan’s mouth. I think of this wonderful friend whenever Dan gets a mouth sore and runs to the bathroom to use the Astring-O-Sol on it. And I thank God for that friend and pray a blessing on him.

Pray

My solution has always been to pray for wisdom. This is how I sort through the advice. I recommend it.

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 2018-04-17 07:00:59.


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 N for No: The Power of Saying No.

When you’re a caregiver, saying, no can be the difference between drowning in obligations and keeping your head above water. Even though it’s important, saying no might be a very difficult thing to do.

Saying No to Others

Saying no can often feel like you are disappointing someone. It’s especially difficult when you’ve been involved in the leadership of a group, or have been a committed member for a long time. It can be hard to find someone who’s willing to step up to the plate and take on your responsibility. And, it’s always a good cause, whether it’s being on the church bake sale committee or your son’s Cub Scout den leader. People will understand, though. And sometimes, other people need a chance to step into these roles. You taking a break might be just the opportunity they need to get out of their comfort zone and contribute.

The People You Love

Saying no to the people close to you can be even more difficult than taking a break from church and civic groups. Your best friend, who can’t find anyone else for to dog-sit for the weekend, might turn to you for help. How do you say, “no?”

“No. I wish I could help, but I can’t.”

And don’t add and apologetic, “sorry.” You have nothing to be sorry about. Once your friend remembers all that you are dealing with, she will completely understand.

Saying No to Your Kids

Most adults will be sensitive to why you are saying no. Kids aren’t always as understanding. They are giving up a lot during this time. Sit down as a family and decide what the priorities are. Look at your family calendar together (including medical appointments). Look at your resources. Ask your support system for help getting your kids to and from the activities that you decide to commit to. Using a tool such as CaringBridge’s Task Planner can be very helpful with this.

Saying No

Burnout Prevention

When you became a caregiver, you got a new full-time job. You can’t add that commitment of time and energy to your life without dropping some other obligations. This doesn’t mean that you quit everything, though. Find something that you really enjoy doing for yourself. It might be a weekly coffee date with your best friend or an occasional spa day to relax and rejuvenate. It should be something you look forward to; something that feeds you rather than drains you.

The power of No

It’s not terrible for people to ask you if you want to do “this” or participate in “that.” They don’t want to offend you by taking away your right to decide for yourself. In fact, saying no can be something that’s very therapeutic. You may not have control over a lot of things when you are dealing with cancer, but you can sure say no to heading up the church picnic planning committee. Saying no gives you some control over your calendar. So instead of feeling bad about it, feel powerful!

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 2018-04-16 07:00:17.


Office Visit

There’s a difference between a general physical and a regular office visit. Knowing the difference can save you a lot of frustration when dealing with your doctor.

What’s an office visit?

An office visit is when you will discuss a new or existing health problem. You may get additional tests run or a referral to a specialist who deals with this problem specifically. Your doctor may prescribe a medication to treat the problem or reassess an existing prescription. This is also the type of visit you have when you want to talk about several vague problems that you’re concerned might add up to something more serious.

Office Visit

What’s a general physical?

A physical is all about preventive healthcare. Regular screenings and a general review of your current medical problems and prescriptions will happen at an annual exam. This is the appointment when your doctor will assess things like how your diet and exercise are affecting your health and what you can do to improve these things. You will get any necessary immunizations at this visit. For this reason, patients often schedule their general physical in the fall so they can get the flu shot without scheduling a special appointment. The key thing here is that physicals deal with the well-being of a person who is generally healthy.

Where the confusion comes in

If you go to your doctor for an ear infection, you will be scheduled for an office visit. You can’t expect your doctor to discuss how your diet may be contributing to iron deficiency to any great length at this visit.

Likewise, don’t schedule a physical to save yourself a co-pay (often insurance companies don’t charge a co-pay for a physical) when you want to discuss your chronic headaches.

How often should I get a general physical?

  • Ages 19-21, once every 2-3 yearsPhysical
  • Ages 22-64, once every 1-3 years
  • Over age 65, once a year

Of course, if you have certain risk factors such as diabetes, depression, smoking etc., your doctor may recommend more frequent physicals.

Why can’t I just talk about what’s going on with my health?

You can, but you have to understand that you might need to schedule more than one appointment if you want your concerns to get the attention they deserve. That’s because of the way appointments are scheduled. The reason for this scheduling system is proper billing, and allotting enough time for each of the doctor’s patient’s needs.

An example:

If Mrs. X comes in for an appointment about her ear infection, she is given a 10-minute appointment. She may be in the office for 30 minutes, but she gets 10 minutes with the doctor. When the doctor gets into the room she springs on him that she is also dealing with chronic incontinence (inability to control her bladder). That’s an entirely different problem that probably requires a urologist. SO, the doctor doesn’t even talk to her about the incontinence other than to give her a referral to the urologist, and he gives her a prescription for an antibiotic for her ear infection. Mrs. X feels like he glossed over her problems. In fact, the doctor did the best thing he could do (albeit in a rushed manner) because he had to fit 2 problems into 1 appointment slot.

If your doctor refers you to a specialist

Sometimes patients feel like their doctor is pushing them off to another doctor because they don’t want to deal with them. Nothing could be farther from the truth. In fact, seeing a specialist is the best thing you can do if you have a specialized problem. For example, if you suffer from chronic headaches, a neurologist may be the best person to assess and treat the problem.

If you would like to get more information on how to get more out of your doctor appointments, sign up for the FREE Appointment 101 series!

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 2017-12-16 15:55:06.


recurrence

The metaphor of a rollercoaster is often used to describe cancer, and for good reason. The ups and downs of your emotions, your schedule and the status of your health affect a patient and their family from the moment you suspect there’s a problem. This is especially hard for children, who have far less information than adults do, about what’s happening, They depend on their parents to help them know how to respond to these peaks and valleys. The first thing you can do to help your children through a recurrence of your cancer is to assess how you’re handling things.

The good times

After enduring the hard times of cancer treatment and finally being declared NED, in remission, or even “cancer-free,” you want to celebrate. At the very least, you want to breathe a sigh of relief and go back to life as normal. Thankfully, you are soon feeling like the old you. But still, it’s hard. Every twinge of pain makes you wonder if it’s back. Afterall, everyone responds differently to various forms of treatment.

Just as you rely on your care team, they rely on you to communicate with them in order to catch a recurrence of cancer. Just like the first time you go through treatment, early detection of disease activity is crucial. You dread your return appointments to the doctor. What if they find something?

Then, One day they do

The results of a scan come back and the doctor tells you it’s a recurrence. The rug is pulled out from under your feet. It feels very much like the first time the doctor told you it was cancer. You have the same fears and questions as you did when cancer first came in your life, except now, you’re more physically beaten up from various treatments. You may also be running out of treatment options. Your kids are older and very aware of the difficulties that come with each new treatment plan.

My Tip

We’ve always tried to have another treatment option waiting in the wings so that if the current treatment isn’t working, we know what the next step is. That’s helped us to feel less overwhelmed at scan time. This time, though, we have no idea what happens next.

Keeping in touch with your care team

It’s important that you have a good relationship with your medical team. If you feel you can trust them, it is much easier to walk into the unknown. They’ll help you to know whether side effects are temporary, how long they might last, and if a side effect warrants going off of a drug.

Knowing that you trust your medical team will help your children to feel better about things. It’s a good idea to periodically clarify your goals with your care team.

  • Is your cancer (still) curable?
  • What kind of life extension does your doctor think you can get from a given treatment?
  • What is the plan, if this treatment doesn’t work?
  • How can you relieve pain and other side effects?

All of these are things are important to know as you’re weighing your treatment options. Your children will also want to know about these things, especially if they are school age or older.

Only you can decide what is right for you and your family. Even when the medical options run out, or you choose not to pursue them, you can still have quality time with your family.

A Second opinion never hurts.

Whether you’ve just been diagnosed, or you are having a recurrence of your cancer, it’s your life on the line. That being said, it is very likely they will affirm what your doctor is doing. That affirmation can go a long way toward you feeling comfortable with your treatment and building trust with your medical team. Make sure that you let them know about your goals for treatment and bring a full set of medical records with you.

Be prepared

When starting a new course of treatment, make sure that you have the proper medications on hand to control potential side effects you may experience over the weekend, or in the middle of the night when it’s more difficult to reach your doctor. You don’t need to suffer. There are ways to alleviate the side effects of treatment as well as the symptoms of the disease. In order for your doctor or palliative care specialist to best help you, you need to tell them if you are having problems.

The effect of recurrence on your family

Our daughter, Emily described the feeling of recurrence from the viewpoint Emily Ericksonof a patient’s child. “Can’t he just be okay? I just want him to be okay. It really is a roller coaster of emotions for us [kids} as well. If you have your own issues that you’re dealing with, they become maximized with each recurrence.”

This is true. Examining the impact of recurrence on survivors of cancer and their family members, it has been observed that, “Cancer recurrence is described as one of the most stressful phases of cancer. Recurrence brings back many negative emotions, which are different and may be more intense than those after the first diagnosis of cancer. Survivors and their family members have to deal with new psychological distress.” (1)

Teach your children well

It’s hard to go back to the grind of treatment or change to a new one with uncertain side effects and results. Enduring another course of cancer treatment is quite a lesson in delayed gratification, for your children. It shows them what you are willing to do for a time (now), in the hope of having more quality time with them, later.

Recurrence doesn’t mean it’s the end: Our Story

My husband gets his treatment from the University of Minnesota. When he was first diagnosed, we went to the Mayo Clinic in Rochester, MN with the blessing of his oncologist. The Mayo, in turn, said he couldn’t possibly be getting better care. This helped us feel secure with his treatment plan. This made it worth getting a second opinion, even though it didn’t change his actual treatment.

We put on brave faces for our kids. Still, they were crushed when I told them about the scan results. They’d had four years on this roller coaster. During that time, they’d made many friends with parents who have cancer. They had seen some of those friends lose a parent to cancer.

We had a month to absorb the shock. Dan took a couple of short trips that needed to happen before he started treatment again. Melissa Turgeon from the Angel Foundation came to our home with an intern and a photographer and gave us some amazing memories. They made plaster molds of Dan’s hand and of our hands together. The photographer captured those moments as well as some very fun family pictures. We were preparing for the end of those kinds of good times.

Plaster Casts

When I told the girls, they were happy but hesitant to get too excited. One of our daughters said. “We’ve just seen this so many times; up and down, up and down.” The girls were now older and more experienced with this dreaded disease. They knew what was ahead. We had plaster casts made of Dan’s hands and one of his hand and mine together. The Angel Foundation arranged to have a photographer capture our family on film before things changed…again.

Melissa Turgeon from the Angel Foundation made plaster casts of Dan’s hands. Photo by Jim Bovine.

Surprise!

Then, Dan went back in for a pre-chemo CT scan, just to get a baseline of where he was. The cancer that was on the previous month’s scan was mostly gone! So, back on the Tagrisso Dan went.

After 2 years of Tagrisso, the cancer again progressed. Gemzar and Cisplatin were used for a while, but it’s no longer responding to treatment and the University of Minnesota has run out of options for him.

The end of the line?

Having nothing left with which to barricade the door to death is frightening. It can feel like the end of the line. Dan will return to the Mayo Clinic in the hope that they will have an experimental treatment that he can try. The treatment might work, but it might not.

It really is a roller coaster.

It’s okay to grieve

While it is best if your kids see you as being in control of your emotions so that they aren’t afraid, it is still okay to grieve. In fact, it is very healthy. You may feel frustrated by the news of recurrence. You’ve done everything that you were supposed to do and now you are back in the chemo chair.

Often, everyone in the family is trying to be strong, leaving others in the family to wonder if they are the only one hurting and if it’s even okay to feel like they do. It’s helpful for families to take some time to talk together about their feelings. It can help each member to know that they aren’t the only one who is sad (or angry or frustrated, etc.) about the recurrence. Then, you can roll up your sleeves and move forward in the way that is best for you and your family.

More…

For more information about how to help your family through your cancer journey, check out my latest book, Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer. It’s available in paperback and Kindle!

Buy it TODAY!

 

 

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. ‘Again’: the impact of recurrence on survivors of cancer and family members.  2010 Jul;19(13-14):2048-56. doi: 10.1111/j.1365-2702.2009.03145.x. Vivar CGWhyte DAMcQueen A.

Originally posted 2018-08-06 07:00:01.


Making Memories

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 M for Memories & Terminal Cancer.

When someone you love is terminally ill, making memories becomes a priority. Recording memories is important, too. Often caregivers hesitate to say that memories are the thing they want to make most. There is often concern that by talking this way, you will hurt the patient you are caring for. Maybe they will think that you’ve given up. The truth is, everyone is thinking about memories, but few people talk about it. That’s okay, to a point. When you know that time is limited, it’s important to help the patient reach their end of life goals.

Final Wishes

To prevent family discord, it’s essential that the patient, express their desires regarding everything from medical decisions to who they want at their bedside when the end comes.

They should have an Advanced Care Directive as well as a proxy (probably you, their caregiver) who can make medical decisions should the patient be unable to do so. Even with these valuable tools, it’s often difficult for family members to believe that the patient’s desires could be what they are. Hearing them from the patient’s own lips will go a long way toward helping other members of the family understand that you, the proxy, and medical team are honoring the patient’s wishes.

There is Always Hope—Hope Changes

People who are terminally ill often go from big hopes to being disappointed. They go from hoping for a cure to hoping for “quality of life.”

There’s a difference between curing and healing. We can be healed, even at the end of life. Healing is wholeness. It’s reconciliation between estranged family members. It’s forgiveness. There comes a time when we need to switch from treatment for curing to healing. Sometimes healing involves leaving lasting memories for posterity. Are there people you need to make peace with? Are there unspoken things you need to say? Include these on your list of goals.

Hospice

Hospice, as an approach, can enable a patient to look outside of the box and find other ways to reach these goals. Figure out a way to meet those goals despite death. For example, the patient can prepare cards for events such as their children’s birthdays, graduations, weddings, and other big events. You, as a caregiver can help the patient with this. How does he or she want to be remembered? How can you ensure they won’t be forgotten?

Live until you Die

Everyone has certain goals they’re holding on to. What are the goals of the loved one you are caring for? They may include a wedding he or she wants to attend, the birth of a grandchild, or a trip they want to take. These goals can strengthen their resolve to survive.

A lot of people avoid setting goals out of fear of failure. You can really set your heart and mind on achieving them when you say those goals aloud and write them down. Goals often change. Reassess them often and decide whether or not they are still a priority, or if they need to be adjusted, or let go of.

You and your loved one can hang on to hope that you’ll get to the wedding, or visit Italy. But, if you can’t, have a plan in place that will enable you to experience a taste of it. As a caregiver, you can work with your loved one’s care team and family members to help your loved one achieve as many of their goals as possible, making memories in the process.

Memories: Our Story

In the time we have had, Dan has spent time writing letters and making both video and audio recordings for his children and grandchildren. We have been intentional about making memories. We’ve had family pictures taken and even had casts of his hands made.

 “When you were born you were crying and everyone else was smiling. Live your life so at the end, you’re the one who is smiling and everyone else is crying.”

― Ralph Waldo Emerson

One thing that has helped Dan share his stories is The Memory Maker’s Journal. The questions in the journal will bring to mind memories of your family, your youth, your early adulthood, and the family you raised. This is perfect for recording the memories you would like to pass on to future generations. It also makes a great family activity. Ask loved ones these questions and record the stories of their life. Your experiences and your memories are yours alone until you share them with others. By making a record of them, you leave a part of your life to live, even beyond your years. The treasure that is locked inside of you is a gift you can give future generations.

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 2018-04-14 07:00:12.

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