Caregiving Wisdom

The following are 6 nuggets of caregiving wisdom that I have gained the hard way. I’m a caregiver for my husband who has been living with stage IV lung cancer since 2012.

Nugget of Caregiving Wisdom #1   Looks can be deceiving.

Both caregivers and patients can keep it together in public, only to fall into bed, exhausted, once they get home. One patient said that people often were amazed at how good she looked, considering she was undergoing treatment for breast cancer. She said, “I wish I felt as good on the inside as I look on the outside.” You can’t control how others see and respond to your situation. That’s okay. But make sure that you don’t compare yourself to how you think you should be doing. Things like housework, yard work, and hitting the gym will have to take a back seat, so ditch the guilt. Those things mean nothing when someone is dying.

Nugget of Caregiving Wisdom #2   Work as a team.

Friends, family, doctors, the caregivers, and the patient are a team. Don’t feel like you have to, or should be able, to do it all. No one was meant to take on that load. There will also be times when you are able to do more and times when you have to do less. During those times when you are getting worn down, rely on your team. Utilize the tools available to you like Caring Bridge. This can help you bridge to your community.

Nugget of Caregiving Wisdom #3   Relationships will change throughout the caregiving journey.

Some of the changes will be negative. Illness will change the life of the patient and the caregiver as well as those who love them. There’s a lot of grief over what once was, but is no more—even if you end up in a good place.

There are also positive changes. Often relationships are strengthened as people reassess their priorities. You find out who really cares by their response to what you are going through. Spousal relationships no longer sway to flippantly considering splitting up.

Nugget of Caregiving Wisdom #4   YOU will change throughout the caregiving journey.

A few of the great quotes I heard from caregivers on the panel were:

  • “Wisdom is healed pain.”
  • “The dying can teach us how to live.”
  • “It’s a tougher life, but it’s a bigger life.”

Nugget of Caregiving Wisdom #5   There’s no perfect picture of a caregiver.

There is no right or wrong way to do it. Age, diagnosis, prognosis, and support system, all make each case different. A caregiver isn’t just a warm body. They offer spiritual, emotional, financial and physical care. How this looks will be different for every patient.

There’s a lot you can’t do for the patient, but you can be present. Listen to hear, rather than to respond. Do this and you’ll get all the information you need.

Nugget of Caregiving Wisdom # 6   Anticipatory Grace

Fear is a very real, very intense part of caregiving. Fear of:

  • Not doing well enough
  • Scan results
  • Treatment side effects
  • Financial future
  • The kids’ well being
  • “Devastating information” we get from the doctor (or Dr. Google)
  • The death experience

You want to hold on tighter to what you could lose. Learn to release so that you don’t miss out on the beauty. Take life one minute at a time rather than going down the rat hole looking for the worst.

I have plenty more nuggets of caregiving wisdom to talk about in future posts. Until then…

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 2018-04-26 07:00:14.


Tagrisso Video

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 V for Video. I will be sharing the videos we taped to share how Tagrisso helped my husband and I have more time together.

Background

In 2015, Dan began coughing frequently. Soon he was struggling to breathe. It soon became clear that the treatment he was on was no longer working. After being tested for genetic mutations, we learned that Tagrisso was a treatment option for Dan. Within a couple of weeks on the drug, he was breathing freely. The amazing thing was that unlike other treatments, he didn’t have a lot of side effects on Tagrisso. Soon, we were living life again!

Making a Video*

In November, 2017 we were invited to share our story in video form. I really appreciated the integrity of the videos. They really stayed true to our story and our experience with Tagrisso. It’s so important to be tested for genetic mutations to learn what treatments are a good fit for you.

Unfortunately, the video is no longer available on youtube

Video of Our Story and Tagrisso: A Promise KeptMaking a Video

We Flew out to Richmond Virginia to share our story of how Tagrisso helped us live life as close to normal as possible, despite Dan’s cancer. When Dan and I got married, he promised that we would go on a date every week. I said it would be okay if we couldn’t sometimes, but he was determined to keep the romance alive by having a weekly date night. Making a video about our experience with Tagrisso was no different. We went out for a night of music and ice cream. They made a video of it all, as well as our story, told from each of our perspectives. It was fun to have a behind the scenes look at making a video.

 

 

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 2018-04-25 07:00:26.


Unrealistic expectations and Parental guilt

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 U is for Unrealistic Expectations & Parental Guilt.

Parental guilt is part of having kids. It comes with the job. You first feel it when you make decisions about feeding, Breast or bottle? You may feel guilty about your decision to either go back to work or to stay home with your baby. Education decisions such as where your child will go to school (or if they will be homeschooled) make matters even more complex, And, almost always, finances tug at those “guilt strings.” It’s hard to balance life in the best of times. Adding the roller coaster of cancer to the mix makes it nearly impossible. At the root of this parental guilt are unrealistic expectations.

When you or (your spouse) get cancer

Parental guilt hits an all-time high on the guilt-o-meter. You’ll feel it every day.

Here are just a few of the things that add to that parental guilt :

  • Finances are even tighter than before.
  • Time is stretched to its limits.
  • Your new schedule, filled with appointments and blocks of time overtaken by fatigue, completely alters your family’s way of life.
  • Your child may need to change (or even drop) certain activities because of finances, fatigue and scheduling conflicts.
  • You’re exhausted and often, crabby. Sometimes you say things you wish you could take back.
  • Little Mary can’t have friends over very often because you need the house to be quiet so you can rest.
  • Baking brownies for little Johnny’s scout troop won’t happen anytime soon.
  • You forget to plan dinner more often and end up eating take-out four nights out of seven.
  • As if that’s not enough, you begin to wonder about what your child’s future will look like after living with a parent who is fighting cancer.

More to Mum

Louise at More to Mum wrote a post called “Mum Guilt: Revealing the Standards You Impose on Yourself.” In it, she defines guilt:

“Guilt is the feeling we get when we don’t meet the standards we’ve set for ourselves.”

If that’s true (and it is), we have a lot more control than we think, over whether we feel guilty, or not. The control lies in examining and changing our unrealistic expectations. How do you do that when everything feels so overwhelming?

Louise at More to Mum has graciously allowed me to share her infographic called, “Working Through Mum Guilt,” (or parental guilt). It’s self-explanatory, but to get the most out of it, check out her site, and especially this great post.

Mom to Mum Guilt

 

 

Find your routine

Building a regular routine is one of the best ways to give your children a sense of security and stability. This can be very comforting for all members of your family. You can utilize something as simple as a weekly board game or a TV show that you can share as a family. It could be a meal that you share on a regular basis. Praying as a family is a wonderful tradition that will not only comfort your family but will also pass on your faith values and be a reminder that you are not alone. Don’t be discouraged if things don’t go as planned.

Sometimes unexpected detours take you right where you need to be.

 

When it’s hard to commit

It’s hard to commit to an activity when you worry you might let people down if you can’t make it. Seek out low-commitment opportunities for your family. Talk to whoever is in charge of the activity. Let them know your situation. They will be able to put your mind at ease. They’ll also understand if for some reason you miss, or need to drop the activity altogether, in the future.

A full calendar?

Every member of your family is involved in activities outside of your home. From church activities to music lessons, these are all good things. But, there are times when these things are more of a burden than a blessing. During different seasons, reassess your activities. Some activities should be cut, some continued, and some replaced by other activities that are a better fit for your family.

Living With Cancer A Day in the Life of a Cancer Patient

When there’s an activity your child wants to participate in, but it doesn’t fit your family’s schedule, there’s a possible solution. Ask family and friends for help. This can be hard. That’s where the next tip comes in.

Kick pride aside!

In the beginning, it can be hard to accept help when it’s offered. Know that this is a temporary situation. When anyone offers to help you out say, “YES!”

It can be even harder to ask for help. I learned to ask for specific help when things were particularly difficult (like when Dan was on an especially hard chemo regimen). This included asking for meals and help with transportation for our kids when there were scheduling conflicts. It was an enormous blessing for our family to experience the generosity of friends and family. By being direct, you are helping friends and family who want to help you but don’t know what you need most.

You don’t need to be perfect—no one is.

It’s important that you cut yourself some slack. It can be difficult to balance the needs of you, your spouse, and your kids. You’re doing the best that you can, and whether they say it or not, your kids realize it. Kids are resilient.

 

My prayer as a caregiver and a parent: “Lord, don’t let this be wasted.”

Bonus Tip!

Let go of the little things, like having a tidy house. If you’re used to having everything in its proper place, this can be tough. If your house looks like mine does, right now, you’ll love this one! Housework can wait.

Let go of the belief that your house needs to be tidy. Instead, be satisfied with keeping it clean. There’s a difference. Right now, I have 3 baskets of clean laundry sitting in the middle of my living room floor. My desk has so many stacks of paper on it that I write in the living room with my laptop. There’s nothing tidy about that! But, at least it’s clean. Clean is important, especially when you consider the fact that cancer treatments often suppress the patient’s immune system. So, germs aren’t a good thing to have to hang around. But, the toys on the playroom floor aren’t hurting anyone (unless you step on one). The same goes for yard work. Let it wait or let someone else do it.

By setting realistic standards that are right for you and your family, you can let go of the unnecessary guilt that interferes with your joy and freedom. You have enough to worry about. Don’t add parental guilt to it.

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 2018-04-24 07:00:58.


Time Management

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 T for Time Management & Cancer.

One of the things that I was surprised by when my husband was diagnosed with cancer, is how out of control our calendar became. We used to have this nice big calendar that hung on our refrigerator. It was always pretty full but under control. Within a couple weeks of my husband finding those enlarged, hardened lymph nodes along his collarbone, we realized that we needed to completely revamp our time management skills.

In the Beginning

In the beginning, everything that wasn’t a medical appointment had to go.Dan was being diagnosed and we needed to be as flexible as possible. After all, we were racing the clock in the hope that we could learn what we were dealing with and fight it while it was still curable. That flexibility with our time management meant we would grab any opening the clinic had for tests, biopsies, scans, and consultations. Dan was diagnosed, staged, and had a treatment plan within two or three weeks, which is really quite fast.

Time Management and Treatment Schedules

Things did calm down a bit after that, but with each new treatment, we had to again change our time management. Initially, when you start a new treatment, you study up on what you can expect.

  • What’s the administration schedule?
  • What are the probable side effects and when can we expect them to kick in?
  • Will those side effects taper off? If so, when?
  • Will the side effects get worse as the drug builds up in his system?
  • What drugs will be used to counteract those side effects?
  • What are the side effects of those drugs?
  • How often will he have scans?
  • When will we know if the treatment is working?

These are all questions that we are still asking about Dan’s latest treatment plan. Often each round is different than the previous one, so you need to remain flexible. Because we still aren’t sure of the answers yet (2 rounds in) we are still tweaking out time management skills.

One example of this:

Dan had gotten several Gemzar drips when suddenly he had a terrible reaction. This meant an unexpected trip to the emergency room and steroids to get the rash he had under control. We wondered if he would even be able to continue his treatment. He was, but they had to make some changes. One of those changes is removing the drug Neulasta from his treatment plan. This drug boosts white cells, protecting him from a serious illness. This could mean more trips to the emergency room and definitely warrants using care with going out in public.

Several years ago he was on a treatment that dropped his white cells. He developed Neutropenia with fevers that sent him to the emergency room weekly. He could no longer go out in public. This meant no work and no church. The kids and I needed to be careful as well. We lived in fear of unwittingly bringing some virus home that would send him to the hospital. Time management meant always being willing to cancel our plans. It was easier just to plan on staying home.

For me as the caregiver, Dan’s isolation meant that it was up to me to take care of transporting the kids to appointments and activities. And with three daughters, one with special needs, I was kept hopping.

Time management

So, How DO I Do It?

First of all, I got a good planner. I had always used a calendar for time management in the past, but those tiny boxes just didn’t cut it. I bought an At-A-Glance Planner because it had plenty of room to write down my daily obligations and appointments. Plus, I could see my entire week in one spread. Every night I look at the next day’s schedule—plus the rest of the week so nothing pops up and surprises me. Also, once a week my husband and I have a time management huddle. We look at one another’s calendars over coffee to prevent any scheduling conflicts. If one comes up, we decide how to work it out. Sometimes that means asking for help from family or friends. There have been times when we’ve used the CaringBridge task planner to ask for a volunteer driver.

When things get hectic, I clear my calendar of everything non-medical. From there, I fill in things if I feel like can handle it. This really takes the pressure off by removing the feeling of obligation.

How you do it will depend on what works for you and your family. It takes a bit of experimentation to find your new groove, but you will do it! I’d love to hear about your time management tips.

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 2018-04-23 07:00:01.


Staging Your Cancer

Doctors stage a patient’s cancer at the time of diagnosis. Doctors determine the extent of your cancer, such as how large the tumor is, and if it has spread, using x-rays, lab tests, and other tests or procedures.  This is called the “stage” of your cancer. By staging cancer, your doctor can determine among other things, how aggressive the cancer is and how aggressive the treatment will have to be.  Today we will look at how these staging systems work.

Most staging systems include information about (1):

  • Where the tumor is located in the body
  • The cell type (such as adenocarcinoma or squamous cell carcinoma)
  • The size of the tumor
  • Whether cancer has spread to nearby lymph nodes
  • Whether cancer has spread to a different part of the body
  • Tumor grade, which refers to how abnormal the cancer cells look and how likely the tumor is to grow and spread

The most commonly used system of staging is the TNM System, usually seen on a pathology report.

What is the TNM System?

T stands for tumor.

Numbers (and sometimes the letter X) accompany the T.

X means the main tumor can’t be measured. O means that it can’t be found. Numbers 1-4 indicate the size and extent of the primary tumor. The higher the number, the larger the tumor, and the more it is invading nearby tissue. These numbers are sometimes broken down further, to give a more precise picture of how extensive the cancer is. For example, T2a and T2b. A would be closer to T2 and b would be closer to T3.

N stands for regional lymph nodes.

The number (or the letter X) accompanying the N indicates the number of nearby nodes that are cancerous.

X means that cancer in nearby nodes can’t be measured. 0 means there is no cancer in the nearby lymph nodes. Numbers 1-3 indicate the number of cancerous lymph nodes, and where they are. The higher the number, the more lymph nodes there are that contain cancer. Localized cancer is limited to the location where it started, with no indication that it has spread. Regional cancer has spread to nearby lymph nodes, tissues, or organs.

M stands for metastasis.

There are three possible letters/numbers that can accompany the M. X indicates that metastasis can’t be measured. 0 means that cancer hasn’t spread to other parts of the body. 1 means that it has spread to other parts of the body. When cancer is described as “distant,” it has spread to distant parts of the body.

From this TNM staging system, doctors derive the more commonly known…

Stages I to IV

  • Stage 0 means that abnormal cells are present but haven’t spread. Doctors call this, “in situ,” or CIS. CIS isn’t cancer but could become cancer.
  • Stage I, II, and III mean that cancer is present. The higher the number, the greater the concern. Doctors assess the size of the cancer and how invasively it has spread into nearby tissue.
  • Stage IV is cancer that has spread to distant parts of the body.

The doctor said Dan’s cancer was at least stage IIIb. This was based on his tumor and lymph nodes. But was he stage IV? To find that out, doctors ordered a PET scan. It showed that cancer had crossed his thoracic region and was, therefore, distant. That made it stage IV.

Lymphoma

Doctors stage lymphoma using a different system. They look at which lymph node regions are affected, and how many are affected. Again, as the number of the stage increases so does the extent of the cancer’s effect on the patient. Progressive or refractory lymphoma is when cancer continues to grow or spread despite treatment. When doctors treat lymphoma successfully and then it returns, they call it recurrent or relapsed lymphoma. (2)

Leukemia

Leukemia uses a completely different staging system known as the Rai staging system. The Rai system takes several things into consideration, including whether there are high levels of lymphocytes in the blood, also known as lymphocytosis. Does the patient have enlarged lymph nodes or lymphadenopathy? Is the patient’s spleen enlarged? This is called splenomegaly. Does the patient have anemia or low red blood cell counts? Are the patient’s platelets low, also known as thrombocytopenia? Is the patient’s liver enlarged? This is called hepatomegaly.

All stages of the Rai symptom include lymphocytosis (high levels of lymphocytes). Stage:

  • 0 …means that there is lymphocytosis, but no other staging conditions present.
  • I …is when lymphadenopathy accompanies lymphocytosis.
  • II …adds an enlarged spleen and/or liver, and possibly lymphadenopathy, as well.
  • III …includes anemia, and possibly lymphadenopathy and/or enlarged spleen and/or liver.
  • IV …includes thrombocytopenia (low levels of platelets) and possibly the other symptoms.

To make things even more complicated, European doctors use a completely different system known as Binet classification. Since I am writing in the United States, I won’t go into that system. (3)

Brain and Spinal Cord Tumors

Cancers of the brain and spinal cord tumors do not have a formal staging system. That’s because these kinds of tumors rarely spread to other parts of the body. This risk with these cancers is their effect on the brain and central nervous system. (4)

The Stage Stays the Same

The stage doesn’t change, even though the cancer might. Doctors refer to cancer by the stage it was given at diagnosis. It doesn’t matter if your cancer has improved due to successful treatment, or if it gets worse and spreads. If it was stage III, in the beginning, it’s still stage III after it has metastasized. Doctors add new information to the original stage over time as the cancer changes.

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 Cancer Institute, Diagnosis, and Staging. Staging.
  2. Cancer.Net Non-Hodgkin‘s Lymphoma Stages
  3. Cancer.Net Leukemia Stages
  4. Baylor Scott and White Health, The Stages of Brain and Spinal Cord Cancer

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