What if

Cancer can often feel like a roll of the dice. The unknown can be the hardest part of cancer and its treatment. This causes patients and their families to often ask, what if. One year into his treatment plan, Dan’s doctor declared that Dan was NED (having no evidence of disease). This is a term used to describe what people think of as a state of remission (in certain types of cancer). It is a wonderful feeling to be NED. Still, because Dan’s cancer was advanced and ultimately terminal, we had been told that it was only temporary and that at some point Dan’s cancer would rear its ugly head again.

What If

One thing that surprised me was how uneasy I felt, even during that time. His scans were now farther apart. Instead of being every 6 weeks, they were every 3 months. What if cancer began to progress just after a scan, and then grew, unchecked, for 3 months? What if? That question plagued me.

We were counting on God to give us the time we needed as a family, and we were counting on people to pray for us, so I also feared that because Dan was doing well, people would forget that we still needed prayer. And, at certain times, like when Dan was about to have a scan, or he just wasn’t feeling quite right, a what if would cross our minds.

  • What has happened since the last scan? What if the cancer has progressed?
  • Will we be able to stay the course, or will we suddenly have to learn about a new treatment? What if that treatment doesn’t work?
  • If there is a new treatment, what will the new side-effects be like? What if the treatment is really hard?
  • What if the treatment involves infusions? Are our schedule and routine going to go through another upheaval?
  • Will there be another option when this one runs out (Because it always stops working at some point)?

Kids worry, too

Our kids worried too. In the back of their minds was their own “what if” list. It was especially bad just before a scan.

While most young children, will be able to quickly move beyond the cancer once treatment is done and you’re feeling better, some children worry more than others and may need continued support.

Teens may avoid talking openly about their fears or concerns. It is often easier for teens to discuss their fears with someone outside the family. You can see if they would like you to coordinate a time for them to talk with an adult they trust or can feel at ease with.

Kids tend to see things just as they are. Once you complete your treatment, life goes back to normal and you begin to look like your “old self” again, they will probably think that the illness is over. You might want to tell your children that everything will be fine, but it’s best to let some time pass before you give them any assurances. Unfortunately, cancer can recur or metastasize (spread to another part of the body).

Dealing with the question What if

 

Dealing with feelings of uncertainty

You should be honest about your feelings of uncertainty—with yourself and with your kids. They may be experiencing some of the same thoughts that you are. Be honest about the fact that if the cancer returns, it will mean more treatment, of some sort.

During this time, you can—and should, be happy. When a treatment is ended, there is plenty to be happy about, and you can share those things together. Maybe you’re looking forward to not feeling nauseous anymore. If you lost your hair due to treatment, you can enjoy seeing it return (maybe even different from before). Enjoy the moment, even if you don’t know what to expect in the future.

Our Story

When you have a “treatable” cancer and you respond to the treatment there is every reason to hope. My husband, Dan was diagnosed with stage IV, metastatic, lung cancer. We were told that his cancer was terminal and that we were buying time. Even though it looked hopeless, medically, we had reason to hope. Our hope is in the Lord, Jesus Christ. He has been our strength throughout this journey. I am grateful for that hope. We have had over five amazing years of memories, to date, that we might have otherwise missed.

Dan’s most recent scan shows that his cancer is again progressing. That means starting a difficult course of treatment, again, and worries about whether or not it will work—and for how long. It’s during these times that I remind myself, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day’s own trouble be sufficient for the day.” Matthew 6:34 RSV (1)

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

Footnotes:

  1.  from the Revised Standard Version of the Bible, copyright © 1946, 1952, and 1971 the Division of Christian Education of the National Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved.

Originally posted 2018-02-05 07:00:45.


Giving gifts to brighten a patient's day.

Confession: I’m a Terrible Gift Giver. I don’t know why. I just am. Each Christmas my sisters-in-law and I all exchange gifts. They are little gift bags of things that make life fun: notebooks, lotions, great pens, etc. I am always in awe of the ladies’ creativity and thoughtfulness.

In comparison, my ideas are unoriginal, and my gift bags aren’t nearly as cute. Still, they appreciate my effort. Gifts are another way to show someone you care about them.

Money

Money can be a sensitive subject, but it is an important part of life. Many times, we’ve had people bless us with cash, checks, and gift cards just when we needed it most.

Because of being self-employed Realtors, we don’t get sick pay. So, when Dan was diagnosed with cancer, one of the things that began to suffer was our finances. With all of Dan’s appointments, and him becoming sick from treatment, many potential clients were unsure of whether we’d be able to give them the attention they needed in their home buying/selling process. Often they were tempted to choose someone else to represent them and we were left with no income.

Even patients with jobs that offer sick pay, find that it runs out all too quickly.

The patient’s spouse needs to be there for the patient during treatment and recovery, and not only for support. When someone is facing an illness that can be terminal, it’s important for the family to have as much time together as possible.

This is especially a concern when there are children at home. Emotional struggles and fear can quickly creep in. Having both parents there to manage the children’s insecurities and the by-products of the situation make a big difference. You can learn more about parenting with cancer in my upcoming book, Facing Cancer as a Parent.

The Gift of Giving

Some people are more comfortable giving gifts, than “doing something.” That’s wonderful because gifts can make as much of a difference as anything. They can be a huge blessing and brighten someone’s day.

Gifts can be practical, fun, interesting, serious, or light, depending on what your friend needs the most.

When giving gifts, it’s helpful to keep in mind the interests and hobbies of your friend. They may appreciate something really silly or unusual, or something that is deeply meaningful.

If the patient is someone you don’t know as well, like a neighbor or work colleague, you may want to stick with something more traditional.

Gifts We’ve Received

We’ve received some gifts that have lightened our load during this journey. Gift cards to order pizza enabled us to make our daughter’s 11th birthday more special, even though we were financially strapped.

One day a dear couple stopped by with a pair of slippers, a robe, comfy pajama bottoms, and several meals. We were overwhelmed by their love for us.

Another couple came over during the holidays with a basket full of fruit, and a gift card for groceries which we used in order to have a wonderful Christmas meal with all of our kids.

We’ve been given timely financial gifts that have dramatically improved our lives.

I could go on, but instead, I’ll give you a list of some ideas you can use to bless the people in your life who are struggling.

Some Suggestions:

Facing Cancer has great ideas for a gift to give cancer patients.
Facing Cancer as a Friend is available on Amazon.com in Paperback and Kindle formats.

Digital Gifts:

  • CDs or gift cards for downloadable music or audiobooks
  • DVDs of movies, TV shows, or documentaries
  • A video message from family and friends
  • Pictures of friends and family
  • An e-reader and a gift card to add some books to it.

Traditional Comfort Gifts:

  • A good book, or a magazine or newspaper subscription.
  • Crossword or Sudoku puzzles
  • Note cards or a journal
  • Gift a soft, comfortable hat or scarf if your friend will lose his/her hair with treatment. This helps men and women feel more comfortable in appearance, and physically. You lose a lot of heat through your head in the winter if you don’t have hair. Bald heads burn easily in the summer sun without protection.
  • Gift a super comfy blanket, socks, or robe, for couch lounging or trips to chemo.
  • Slippers, pajamas or robe
  • Give a plant or send a flower delivery. However, make sure the person isn’t on neutropenic precautions first; fresh flowers can be an infection risk for cancer patients with weakened immune systems. Also, make sure they don’t have any sensitivities. Lilies, in particular, can have strong scents that bother some people.

Gift Cards:

  • Gift certificates for massage, spa services, restaurants or museum/art gallery passes can all help lift someone’s spirits and make life a little more “normal.”
  • Grocery stores gift cards can be extremly helpful.
  • Buy gas cards to help with the extra driving to appointments. I remember one week when we spent about 10 hours driving to and from appointments. Friends gave us gas cards which made a huge difference!

Splurge and Pamper:

  • Accessories (earrings, bracelets, scarves, ties, hats), makeup, or beauty items
  • Portable hobby supply kits (scrapbooking, drawing, and needlepoint) or puzzles can be relaxing gifts.

Paid Services:

  • Treat him or her to a spa or beauty treatment: manicure/pedicure, facial, makeup application, etc. It may be the first time they’ve felt pampered in a while.
  • Housecleaning- When someone has cancer, the entire household goes into “survival mode,” and cleaning often falls by the wayside. But that doesn’t mean that the newly accumulated dust and clutter go unnoticed.

Often, patients and caregivers are embarrassed at the condition their home is in because they lack the time and energy to clean. They scurry around trying to get things in order when they hear that someone is stopping by. This leaves them exhausted, later.

You could offer to help clean, (use your best judgment as to how this will be received). Often shame and embarrassment will keep people from accepting.

Paying for a visit from a cleaning service on chemo day would be a huge blessing. They will return home to a spiffed up house and have one less thing to worry about.

Note* Make sure that they are okay with this since some people are very private and will not be as appreciative of this.

  • Send a mobile masseuse for a gift massage. Use caution if the patient has metastatic cancer that has spread to their lymphatic system. The safest thing to do is to have them check with their doctor. This is also a great gift for stressed-out caregivers.

If you want to give “outside of the box”:

  • Check to see if your employer would allow you to donate money or vacation time to cover paid-time-off hours for the patient or caregiver you work with.
  • Look into donating air miles so that they can take a trip, or family from far away can visit.

A Bonus Idea for the Adventurous: A Chemo Day Bag!

Spending time in the “chemo chair” is no fun. The day often includes several different appointments and can become long and drawn out. One way to bless someone who’s receiving chemotherapy is to give them something to make the day easier and the time to go by faster.

Any bag will do. If you are going to go all out, a diaper bag has plenty of room, and all of the pockets are great for organizing the goodies you can fill it with. Don’t feel like you need to use all of these ideas. Even a small gift bag with one or two of the items will let the patient know you care and want to make their chemo day easier. Here are some ideas to get you started.

  • You could include things like a travel mug with herbal tea or cocoa packets.
  • Lotion and Chapstick help with the drying effect of chemo.
  • Mints, lemon drops or “Preggo-pops” (ginger candy), all help with nausea associated with chemotherapy.
  • A favorite novel, puzzle book or devotional can help pass the hours in the chair. Add a journal and pen for the patient to record their thoughts at such an emotional time.
  • Hand sanitizer and baby wipes are wonderful for cleaning up after a snack (which you could also include).
  • If you really feel like going all out, you could add a quilt or a fleece blanket.
  • A heating pad is a great addition for extra comfort and warmth during those long chemo sessions.
  • Consider putting together a small bag for the caregiver. Often they sit in a folding chair during the hours the patient is receiving chemo.

Gift a Chemo Day Bag

Our Story

Dan developed “brain mets,” or metastasis to the brain, two years after Dan his initial diagnosis of stage IV lung cancer. He went to the University of Minnesota for a procedure called, “Gamma Knife.” It used concentrated rays of radiation to strategically eliminate the tumor in his brain while sparing the rest of the brain. It was going to be a long day, so my mother-in-law came along to keep me company. My brother-in-law gave us a ride so that we wouldn’t need to worry about driving and parking. My sister-in-law sent little gift bags with snacks and reading material for our wait. Each of these loved ones made a frightening day much easier.

Note: This post and its suggestions have been excerpted from the book Facing Cancer as a Friend: How to Support Someone who has 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 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


Daisy Letters

Do you have a child in your life in need of encouragement? There’s a young girl in England who would love to help by sending one of her Daisy Letters!

How Daisy Letters Began

Beginning at the age of 6 months old, Leanna spent much of her life in the hospital, fighting cancer twice. Her response to her personal trials was to help other kids who were facing difficult circumstances. She began the non-profit, Daisy Letters, with the goal of brightening up the day of the children who are going through tough times.

Leanna does something rarely done anymore.

She sends handwritten letters of encouragement. The effect is amazing! Anyone can nominate a child or teen, between the ages 0-19 years to receive one of Leanna’s Daisy Letters. When I heard of Daisy Letters, I went to Leanna’s site and nominated our daughter, Emily. Emily was really struggling with what was happening with her dad’s cancer. Having Asperger’s only added to the difficulty of expressing her emotions in a healthy way. I could see that she was very sad, but I didn’t know how to reach her. I filled in the online forms explaining why Emily could use a dose of encouragement. A few weeks later, a letter arrived from the UK. Emily looked at it with wonderment. Who could have sent it?

A few weeks later…

a letter arrived from the UK. Emily looked at it with wonderment. Emily wondered, “Who could have sent it?” as she examined the letter with international postage. I don’t know what Leanna wrote, but it meant a lot to Emily. She had an extra bounce in her step after that. She still has the letter sent across the sea, by another girl her age, who she has never met, but who cared enough to write.

Leanna says, (in her beautiful British accent) “I know how hard it can be struggling with illnesses, or being in hospital for long periods of time, or having a bad day where life is tough. I would have loved to receive a letter to encourage me, and so I want to be able to do this for other children and teenagers. A handwritten, personal letter can mean so much to the recipient, and with words of strength, encouragement, and care, I want to bring a smile to people’s faces and hopefully brighten up their day.”

She is certainly succeeding!

If your child, or a child you know could use that kind of encouragement, go to the Daisy Letters website to nominate them. If you’d like to help Leanna, you can donate stationery, envelopes, or money to be put towards stamps, and ink cartridges. Send her a message in the reply section on her site, letting her know you would like to help. She will respond, letting you know the best place to send your donation.

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

Originally posted 2018-01-29 07:00:59.


Hospice and palliative care

The battles of the war against cancer are waged, daily within the bodies of patients young and old, wealthy and poor. There we have made great strides. In 2014, “UK death rates for breast, bowel, lung and prostate cancer combined are down by almost a third in 20 years.” (1) Yet, like any war, the casualties at the hands of this disease are great. That’s when hospice and palliative care enter the picture.

Curing vs. Healing

There comes a time when we need to switch from curative treatment to healing efforts. We can heal, even as we die. There can be healing of relationships, spiritual healing, letting go of the things that never should have been clung to in the first place. Hospice and palliative care services enable patients and families to heal.

There’s always hope.

People often start out their treatment plan with big hopes. Over the course of a terminal illness, those hopes can be dashed, sometimes over and over again. It can be discouraging for patients and their loved ones. Even if they are disappointed, there’s still hope. It just changes. They go from hoping for a cure to hoping for a quality of life. They hope for time. And then they hope for an end to life that isn’t devastating. They hope they can say the things they need so much to say. They’re hoping that when things get difficult, They won’t be alone. They’ll have people they can count on and trust.

Your Medical Team

You need to trust your medical team. If you don’t–get a new one.
As you begin the process of dying, your doctor may tell you that the time is near. Yet, you might not think of yourself as dying. It’s similar to how we don’t see ourselves getting old until crow’s feet are surrounding the eyes that are staring back at us in the mirror.

While you can’t predict exactly when you’ll die, your doctor has seen it countless times before, and as your cancer worsens, can give you an idea of when it may happen. It’s important to trust your medical team so that you can make the appropriate plans. At the same time, focus on and making the most of each day, one day at a time. Stay involved with life, doing the things that you love, for as long as you can.

What is Palliative Care?

Palliative Care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family. Your medical team should talk to you about this at the very beginning of your cancer journey. It is helpful for all oncology patients, not just those that are terminally ill.

What is Hospice?

Many people think that hospice is a place, but it’s not. It’s actually a collaborative approach to providing care. You receive these services wherever you are living, whether at home, a nursing home, or a facility that specializes in the care of hospice patients.

Hospice and palliative care combined is the newest recognized specialty, receiving official recognition by the American Board of Medical Specialties as recently as 2006.

While receiving hospice and palliative care services, you will have a medical team that’ll help you and your family manage any problems or issues related to your terminal illness. This team may include any of the following:

  • Doctors
  • Nurses
  • Home health aides
  • Massage therapists
  • Pharmacists
  • Nutritionists
  • Social workers
  • Physical and/or occupational therapists
  • Various types of counselors
  • Clergy who specialize in end of life care

This team is created specifically for your needs and can include as few or as many members as you want and need.

What You May Not Know About Hospice and Palliative Care

Hospice and palliative care services are covered by Medicare and at least in part by most insurance plans. Once you are part of a hospice program, you can leave the program at any time. You can always make adjustments to the services you receive.

In the past, people thought of hospice and palliative care services as “the end.” They dreaded even the idea. The fact is, in a recent study, terminally ill patients were found to have lived longer on hospice, than those who did not use hospice services.(1)

One recent change to hospice care is that in some circumstances, you can still receive curative treatment for your illness. In the past, this wasn’t allowed. There are also transitional hospice and palliative care programs where you receive palliative care until it is time to receive hospice. This gives patients a seamless transition in their services.

You aren’t limited to a set amount of time on hospice. While the program is meant to be short-term (under 6 months), you can be reassessed for re-enrollment if you exceed that amount of time. You can also go off of hospice for any reason, and later receive services again.

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

Our Story

My husband enrolled in a transitional palliative care to hospice program in late 2015. It gave me as his wife and caregiver a great feeling of comfort. We had access to medical care 24/7. This helped me to rest easy knowing that even in the middle of the night, I could call a nurse out to our home, if necessary.

We requested that an oncology social worker come to our home and meet with our daughters.  She was able to help them work through their feelings and anxieties about their dad’s illness. She gave them some coloring journals that were made especially for children who had a parent with cancer. This helped them a lot!

Thanks to a new treatment,  his condition stabilized within a couple of months, and he was able to end his hospice services. When the time comes that he needs them again, he will resume.

The Sooner the Better

It is better to start hospice services sooner rather than later. Half of all hospice patients receive less than 3 weeks of care, while over 35% receive services for less than 7 days.(2) This isn’t long enough to form a good, trusting relationship with your care team.

You will get physical support when you enter hospice, but if you enter too late, you can miss out on spiritual, emotional, and relational healing.

When making the decision about whether or not to look into hospice services, consider the needs of your family along with your own. Hospice addresses the needs of not only the patient but their family members as well. People who wait too long to get hospice care are missing out on valuable resources available to them and their family members. For a minimum of one year after the death of a loved one, family members are eligible to receive bereavement care and counseling through the hospice program.

Chaplains

Even if you aren’t religious, or ascribe to a different faith tradition, it is extremely helpful to spend time with a chaplain. They may be available where you receive your cancer treatment or through your faith community. Hospitals almost always have a chaplain on staff. They’re knowledgeable and experienced in helping people process the end of their time here on earth.

Our Story

Hospice and palliative care are especially helpful for patients who have young children. When Dan was extremely ill, the transitional palliative care to hospice program sent a social worker to our home to help our daughters through the difficult time. She gave our daughters specially designed coloring books for kids who had a parent with a terminal illness. These were incredibly helpful for the girls as they sorted out their emotions and fears. The social worker talked to them and answered their questions. She helped them to feel safe in an incredibly frightening time.

Is now a good time to look into hospice or palliative care services?

Having professionals who specialize in helping patients as they near the end of life can save you valuable time. Don’t ignore the valuable resources that are within your grasp. If your healthcare team hasn’t given you information about services that can help you at this time, tell them that you need to know who would be helpful to talk to so you can make plans for yourself and your family.

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

Footnotes:

  1. Journal of Pain and Symptom Management Vol. 33 No. 3 March 2007. Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window. Stephen R. Connor, PhD, Bruce Pyenson, FSA, MAAA, Kathryn Fitch, RN, MA, MEd, Carol Spence, RN, MS, and Kosuke Iwasaki, FIAJ, MAAA, National Hospice and Palliative Care Organization (S.R.C., C.S.), Alexandria, Virginia;
    and Milliman, Inc. (B.P., K.F., K.I.), New York, New York, USA
  2. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, September 2015
A to Z Challenge Survivor

Newsletter

Find out when I post a new blog.

Archives

Categories

Grab a copy of Facing Cancer as a Friend!

Get the Memory Maker’s Journal

%d bloggers like this: