Category Archives: When Cancer is Terminal


Asking for Prayer

Dan has had significant shortness of breath in the past month or two, so we were very concerned about the results of a scan he had last Monday, 3/12/18. We were asking for prayer that we would have wisdom as we proceeded to deal with whatever the doctor had to say. I feel that God has answered and will continue to answer that prayer. Last Friday, 3/16/18, we had a very sobering conversation with Dan’s oncologist. The results of his scan were a mixed bag. We saw some definite improvements in the scan, enough to continue his current treatment.

There was also some progression.

She spoke very frankly about what needs to happen next. She’s referring him to the Mayo for a second opinion because once Dan is done with this treatment; she has nothing more to offer him. The hope is that Mayo might have a trial that isn’t being publicized (We regularly look for trials on a national trial finding website and haven’t found any that fit Dan).

The Mayo also has oncologists that specialize exclusively in lung cancer. She feels like having another set of eyes and experience could be helpful in finding an approach. Perhaps a traditional single agent that Dan hasn’t tried could buy some time. We are asking for prayer that there would be something for him at Mayo that would be helpful, There are concerns about symptoms he’s experiencing (vision changes, back pain from a spinal metastasis and terrible pain under his armpit which she suspects is from one of the spinal metastasis pressing on a nerve).He needs to have 2 MRIs done next Tuesday on his brain and his thoracic region to investigate his symptoms. If they find out what is causing the armpit pain and vision changes, they can treat it with radiation.

She referred him to palliative/hospice care for a consult.

He will see them on Thursday when he has his next chemo. She wants us to review his health care directive and bring it with that day. She is concerned about the possibility of a blood clot preventing him from breathing properly. Cancer cells throw off clotting agents. So, she wants him to consider what we want emergency services to do at that time. I won’t go into any more of the details, but suffice it to say, it was a difficult conversation. We’ve approached this point before, but it isn’t any easier the second time around. We are asking for prayer that the palliative care consult will benefit his quality of life.

How Are We Doing?

Some people have asked how he is doing. It’s difficult to say. How are the kids doing? That’s also hard for me to know. I’m really not sure of how am I doing as a caregiver, a wife, and mom. So, how can I know how they are doing? It’s something we aren’t really talking about right now, which may seem strange, but sometimes it’s good to sort out your feelings before you try to talk about it. Still, I really appreciate friends and family asking. I wish I had a better answer. I’m sure at some point I will be better able to express it in words.

I can tell you that I’ve been having a hard time sleeping. When I do sleep, it’s fitfully, with nightmares. It’s hard to get out of bed in the morning because I’m experiencing some symptoms of depression. I’ve been surprised at how angry I’ve felt, recently. I am SO angry. I can’t even put my finger on what I’m angry about. Sure, “cancer” would be the obvious answer, but it feels more generalized. I try to keep it bottled up, but that doesn’t really deal with the issue. I anticipate I will transition to some other stage of grief at some point. So, I am asking for prayer for these issues to be resolved.

Where to Go from Here

In the past, our family has always taken a vacation. We can’t do that this year. Instead, we are doing something we’ve talked about for a long time—a staycation. We’re looking for fun, low-cost things to enjoy doing as a family, and have quite a list going. We’re asking for prayer that we can have a wonderful time making memories as a family.

I’ve also made some decisions about how I will personally proceed from here. I’ve decided that I will concentrate on caring for my husband and kids. So, I’ve bowed out of a few things that I normally do. They will be there in the future. I will still facilitate monthly Jack’s Caregiver Coalition caregiver klatches. I have to keep my sanity, somehow.  I’ve been praying about this and I’m at peace with it. I will of, course, still write. Once I get my new orthotics, I will perhaps take a walk each morning if my feet hold up.

Preparing

On a more practical level, I may have a cleaning party if we need to call in hospice. We will need to rearrange some things to make room in our smallish townhome. Dan has talked about putting together a honey-do list and having his own manly version of this. It seems overwhelming to think about. Any caregiver will tell you that a lot of stuff gets glossed over on the home front.

We are also asking for prayer for:

  • cancer to die and Dan to live
  • continued wisdom as we make decisions
  • all of our kids to be at peace during this time
  • Summer to be able to keep up with work and school while coping with this emotional blow
  • nothing to slip through the cracks

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 2018-03-19 00:48:57.


talk to children about cancer

It’s important to talk to children about cancer-even with a “bleak” prognosis. My husband, Dan was stage IV, metastatic, when he was diagnosed. So, we have always been told that his cancer was terminal and that we were buying time. The best we could hope for was that he would be labeled NED, No Evidence of Disease (like remission). It’s especially difficult to talk to children about cancer when you are given such a bleak prognosis.

Our Story

One year into his treatment plan, Dan was declared 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 means that the cancer is still there, it’s just too small to be seen on a scan.

It’s a wonderful feeling to be NED, even though we’d been told that it was only temporary and that at some point Dan’s cancer would rear its ugly head again. One thing that surprised me was how uneasy I felt, even during that time. The first thing that bothered me was that 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 rather than it growing, unchecked, for 6 weeks, it had 3 months to multiply? 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.

Our kids worried too.

In the back of their mind was always the list of “what-ifs.” It was especially bad just before a scan.

  • What had happened since the last scan?
  • Will we be able to stay the course, or will we suddenly have to learn about a new treatment?
  • What will be the new side-effects?
  • Will we have a new schedule, dictated by the chemo schedule?
  • Will there be another option when this one runs out–because it always stops working at some point.

How to talk to children about cancer:

Young Children

While most young children, will be able to quickly move beyond the cancer once treatment is done and you are feeling better, some children worry more than others and may need continued support. In these cases it is especially important to use care as you talk to children about cancer, giving them the reassurance they need, while still being honest.

Teens

Teens may avoid talking openly about their fears or concerns. They often feel a need to protect their parent by keeping their fears to themselves. It is often easier for teens to discuss their fears with someone outside the family. You can see if they would like you to help set that up with an adult they trust or can feel at ease talking to.
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’ll probably think that the illness is over. While you might want to tell your children that everything will be fine, it’s best to let some time pass before you give them any assurances, because unfortunately, cancer can recur or metastasize (spread to another part of the body).

Honesty is the Best Policy

  • Be honest about your feelings, with yourself and with your kids. They may be experiencing some of the same feelings 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.
  • There’s 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.

The Goal…

For people who have an “incurable” cancer, time is the goal, more time to spend doing the things God had called you to in this life, spending time with family and friends, leaving your mark. Remission, NED, stable disease, they are all good, but they are also another place in the timeline when cancer patients and their loved ones take a deep breath that they will hold a while longer. Talk to children about cancer-even if things look bleak.

In our case, we had reason to hope, even though, medically, it looked hopeless. Our hope was in the Lord, Jesus Christ. He’s been our strength throughout this journey. I’m glad we did hope because we’ve had 4 amazing years of memories, to date, that we might’ve otherwise missed.

 Just Released!!

Facing Cancer as a Parent:

Helping your Children Cope with your Cancer

What Are YOUR Thoughts?

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

ABOUT HEATHER ERICKSON

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

My 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


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

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

 

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