Category Archives: Patients


mesothelioma advocate

As an advocate for cancer patients and their families, I daily hear from people facing cancer. Recently, a gentleman named Virgil wrote to me about his experience, Doctors recently diagnosed Virgil with mesothelioma. This diagnosis turned Virgil’s life upside down.

What is Mesothelioma?

Mesothelioma is a rare cancer that forms in the thin protective tissues which cover the lungs and the abdomen. Exposure to asbestos causes cancer in the mesothelium tissues. This cancer is caused by exposure to asbestos. Asbestos is a group of silicate minerals that are fibrous in nature and functions well as a fire retardant. It was once a commonly used insulator. Now that the dangers of asbestos are well known, it has fallen out of use. It can still be found in old buildings and machines. The United States is one of the only developed countries that has not outlawed the use of asbestos, entirely.

Virgil’s Story

Throughout his life, Virgil has had many jobs that have exposed him to asbestos, including automotive and demolition work, I’ve. He says, “On some jobs, the air was so thick with debris and asbestos you could taste it in your mouth.”

Virgil can no longer work and now, mostly lives off of social security disability. Because of fluid buildup in his lungs, he has to be careful about overexerting himself. He has a portable oxygen tank which gives him some mobility. Still, he must limit his activities, Virgil spends a lot of his time spreading awareness and informing others about the resources that helped him on his journey.

Finding resources isn’t always easy

Virgil says, “When I was diagnosed I needed immediate medical attention. I contacted all the top websites on the internet that are supposed to help people with my type of cancer but nobody got back to me.” Then he found Mesothelioma.net. “Even though I contacted them on a Sunday one of their patient advocates gave me a call back within minutes.”

Virgil found valuable information at Mesothelioma.net; information on mesothelioma treatments and doctors, asbestos trust funds for victims, and a lot more. They also sponsor The American Cancer Society, the MD Cancer Center, and the Make a Wish Foundation “They gave me a great deal of helpful information on doctors and resources available to me.”

Mesothelioma advocate

Virgil is now receiving cancer treatment at the National Cancer Institute. The patient advocates have even provided him with financial assistance so he could afford a place to live during his cancer treatments. “If I had not reached out to mesothelioma.net, I would likely be homeless and more importantly in hospice waiting to die. These people gave me my only chance at survival.”

Advocate: Paying it Forward

One of the most important things you can do to ensure your survival is to advocate for yourself. Virgil is an amazing example of an advocate. He searched for information and assistance and is now sharing that information with others. If you have Mesothelioma, check out the information at mesothelioma.net and the mesothelioma resource page at Facing Cancer with Grace.

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 2018-03-05 07:00:27.


Good Nutrition

Getting good nutrition can be difficult when you have cancer, both because of the disease and side effects of the treatment. There are some things you can do to overcome this obstacle to your healing.

Cancer can make good nutrition more difficult

Patients with head and neck cancer often have malnutrition before they start treatment. This is due to pain and trouble swallowing, swelling, and bleeding. Often a patient needs to consider a feeding tube as a temporary way of receiving the nutrients they need during their treatment.  Eating softer foods is important when you have cancer of the head and neck.

The pancreas makes an enzyme which helps break down fats, proteins, and carbohydrates. This enzyme aids digestion and helps to neutralize stomach acid as it enters the small intestine. If the pancreas isn’t working properly, there can be a shortage of these enzymes. This often means the body doesn’t get enough fat and fat-soluble vitamins from the food you digest. Proteins may not be completely digested, leading to the formation of toxins or allergies. Your pancreas also might not break down carbohydrates, leading to diarrhea and other problems with your digestive system as a result of a malfunctioning pancreas.

There are so many reasons why it can be difficult for patients with gastric cancers to get good nutrition. Patients may experience loss of appetite, both from treatment and cancer itself. The stomach may not empty properly. This can cause the patient to feel full longer.

 

Cancer treatment can make good nutrition difficult

Surgeries and radiation can make eating and digestion painful. Chemotherapy and radiation can cause severe nausea and vomiting. Mouth sores can also make eating a painful experience. Ask your doctor for advice on ways to ease discomfort and nausea.

Chemotherapy

Chemotherapy affects rapidly dividing cells like the cells that line your mouth, throat, stomach, and digestive tract. This can quickly affect your ability to get good nutrition by changing the way things taste and your appetite.

The time and duration of your chemotherapy can affect the severity of your appetite loss. Your appetite will most likely return to normal within 2-6 weeks of ending chemotherapy. Even if you don’t feel like eating, it’s important to try to get the good nutrition you need to fight infection and repair tissue damaged by cancer and its treatment. Getting good nutrition also helps fight fatigue and weakness

See a Nutritionist

Ask if your cancer center has a nutritionist on staff, or can refer you to a nutritionist who specialized in oncology nutrition. Oncology patients have special nutrition needs as well as oncology-related issues that can interfere with meeting those needs. They might be able to prescribe extra vitamins or supplements. There are also prescription medications that can help with appetite problems. If thing don’t improve and you begin to lose too much weight, your doctor can help you decide if temporary tube feeding or getting extra nutrients via IV is a good idea.

When Dan was first diagnosed, he saw a nutritionist who was able to give us some great advice about what he should be eating and how to make meeting his nutritional needs easier. She knew the issues that could crop up and make doing this harder. She gave us some easy recipes for shakes and smoothies that made getting the right kind of protein possible, even if Dan wasn’t up to eating solids.

Good Nutrition

Other Tips for getting Good Nutrition

Most cancer patients have higher energy and protein needs. Meal replacement beverages can help supplement those needs. Ensure with Revigor is one example of these. You can make some great tasting shakes at home in your blender and even add protein powder to give them an extra boost.

Along with smoothies, try making Popsicles from blended fruits. This can help increase your caloric and nutritional intake while soothing an inflamed mouth or throat.

Watch the spices! You may need to eliminate certain spices that bother your system. On the other hand, if irritation isn’t a problem, adding new and interesting flavors and spices to your food might be just the thing to entice your palate.

Chemotherapy often changes the taste of your foods. Sometimes the food you eat tastes metallic. Reduce this effect by eating with plasticware rather than metal utensils. Cooking in glass or enamelware can also help.

Choose foods that are high in calories and protein, as well. Stir some protein powder into your ice cream or pudding. Every little bit helps.

Eat what you can, when you can.

When Dan started having trouble with his appetite, we went to the store and walked down all of the aisles. When he saw something that looked appetizing we tossed it in the cart. He keeps his snacks nearby so when he’s ready to nibble, they are there. He ate frequent, smaller meals rather than 3 large meals every day.  He found it easier to eat more in the morning, so that became the main meal of his day rather than dinner when he found it hardest to eat.

If you find it hard to eat solids, don’t waste your fluids on non-caloric ones. You are doing the opposite of dieting. Instead, drink fruit juices, milk, and other beverages that have calories and nutrients. It may not be the optimal way to get calories and nutrients, but at this point, you just do the best you can.

If sitting down at the dinner table feels overwhelming, take your mind off of it and eat while watching your favorite show. People are often told that it’s not a good idea to eat in front of the TV because they will eat more than they realize, without meaning to. Again, you are doing the opposite of dieting. This is your chance to break all of the rules.

If you are finding that you never feel hungry, eat on a set schedule. Every couple of hours eat a small meal. It might just be a banana or a half a sandwich, or maybe a scoop of ice cream. These small meals will give you nutrition and maybe even some good nutrition to pull you through and fuel your body.

 

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 2018-02-19 07:00:34.


Neuropathy

Neuropathy is a set of symptoms affecting the nervous system. Peripheral neuropathy affects your nerves, or those on the periphery of your body: Skin, fingers, toes, etc. Chemotherapy-induced peripheral neuropathy is when these symptoms are the result of chemotherapy.

Symptoms of Neuropathy

  • Numbness
  • Pain This may be constant, or it may come and go like a sharp, shooting/stabbing pain.
  • Tingling, pins, and needles or electric shock type pain.
  • Muscle cramps
  • Muscle fatigue
  • Burning sensation
  • Lack of dexterity, trouble buttoning shirt etc.
  • Problems with balance
  • Sensitivity to cold/heat
  • Trouble swallowing
  • Blood Pressure changes
  • Decrease in reflexes

Symptoms tend to start farthest away from your head (toes and feet) and move closer to your head over time. They are usually bilateral, affecting both sides of the body at the same time.

If Neuropathy Comes Knocking

If you notice symptoms of neuropathy (or any change in your health and well-being) tell your oncologist immediately. They need to know as soon as possible how your body is reacting to the treatment you are on. Then, your doctor can make any necessary changes in your treatment plan and address your concerns when side effects are more easily managed.

Also, see a neurologist to rule out any underlying neurological problems that might be causing your symptoms. If you haven’t had a recent brain MRI, talk to your doctor about getting one.

Consult an orthopedist. They can check your musculoskeletal structure for problems that could be affecting your feet and legs.

Chemotherapy and Neuropathy

Chemotherapy is used to kill cancer cells. It can also affect nerves that connect the spinal cord to the patient’s muscles, skin and internal organs.

Whether a patient develops chemotherapy-induced neuropathy depends on many factors, including the type of chemotherapy used, and at what doses it’s given. And, of course, the individual patient’s health also plays a part.  It can begin at any time after treatment starts and often gets worse as treatment goes on.

Chemotherapy-induced neuropathy may go away after treatment is completed, or it may be a long-term or even permanent problem.

Preventing chemotherapy-induced neuropathy.

Before beginning any treatment plan, discuss the risks of chemotherapy-induced peripheral neuropathy and the ways you can work with your medical team to prevent it.

Is the potential neuropathy from any given treatment usually temporary or is it often permanent?

Find out what side effects to should watch for.

Ask your doctor their preferred way of receiving messages is. Many doctors are moving to electronic charting. Some still prefer to get a phone call.

Your doctor might change the way he or she gives you your chemotherapy. He/she might:

  • Reduce the dose of the chemotherapy
  • Administer smaller doses more frequently
  • Deliver chemotherapy as a slow, non-stop infusion over a longer period of time

Medical Treatments for Chemotherapy-Induced Neuropathy

Oral medications:

  • Steroids (short term)
  • Low dose antidepressants
  • Prescription pain medication (opioids)

Medical Marijuana (in states where it is legal) (1)

Topical Creams:

  • Steroidal creams (short term)
  • Lidocaine, which is a numbing cream or ointment
  • Capsaicin, which is made from the capsaicin oils of hot peppers

Occupational Therapy

  • To help with fine motor coordination (Buttons and shoelaces etc.)
  • To decrease the risk of falls

Alternative/Complementary Therapies:

Relaxation Techniques:

  • Meditation
  • Visualization
  • Hypnosis
  • Biofeedback

Research has proven that these, and other relaxation techniques, can greatly reduce pain levels in patients. (2)

For more information, read this article from the Foundation for Peripheral Neuropathy. (3)

 

acupuncture for neuropathyAcupuncture

Research has shown that Acupuncture improves nerve conduction in peripheral neuropathy. (5) Be sure to use a licensed acupuncture specialist. More and more chiropractors are learning acupuncture.

I have been receiving acupuncture at a pain clinic for the pain in my feet. I was skeptical of the practice until I experienced its benefits.

My doctor told me what led him to become licensed in acupuncture. His father in law is a veterinarian. One day he said, “Grant, I want to show you something.” He then proceeded to perform acupuncture on a dog who was suffering from arthritis in her hips. After the acupuncture session was over, the dog could walk with no problems. “There’s no placebo effect in animals,” he pointed out. Seeing was believing, and my doctor went back to school to learn an additional way of helping his patients.

Manual Lymph Drainage

Because manual lymph drainage is contraindicated in the presence of metastatic cancer, and its benefits have not been well established, I will not go into detail on this alternative treatment for neuropathy other than to say that the reason this is potentially harmful is because of the way the lymphatic system can be used to transport cancer cells around the body with metastasis. You certainly don’t want to help the process out. If you don’t have metastatic cancer and would like to investigate further, check with a reputable massage therapist.

ExercisePool therapy for neuropathy

Exercise to improve your circulation. Consider pool therapy or swimming if pain makes “regular” exercise or walking too painful. Check with your doctor to make sure that the pool is safe for you. Some people need to avoid the chlorinated water because of its effects on their skin. There is also an increased risk of infection. Your doctor will be able to help you weigh the benefits and risks.

Some Additional Suggestions

Avoid alcohol, since it can cause and/or make nerve damage worse.

If you have neuropathy in your fingers, be careful when handling sharp objects. Wear protective gloves while gardening or doing other chores which could damage your hands.

Likewise, if you have neuropathy in your feet, avoid walking barefoot or in open-toed shoes. If the neuropathy in your feet affects your balance, or you stumble on occasion because of it, use supportive aids(handrails, cane, walker). Have grab bars installed in your bathroom.

Avoid extreme temperatures. Check the temperature that your hot water heater is set on so that you don’t scald yourself accidentally.

Eat a high fiber diet if constipation is a problem. Not only can neuropathy affect your bowel habits, but so can the medications you take to manage pain.

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. The Neuropathy Journal, Treating Neuropathic Pain with Medical Marijuana. Morrow, David
  2. Western Journal of Medicine. 2001 Oct; 175(4): 269–272. Pub Med.gov
  3. The Foundation for Peripheral Neuropathy. https://www.foundationforpn.org/living-well/integrative-therapies/mind-and-body/
  4. Acupuncture treatment improves nerve conduction in peripheral neuropathy. Eur J Neurol. 2007 Mar;14(3):276-81. Pub Med.gov

 

Originally posted 2018-02-12 07:00:39.


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.


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

Ring Theory Circle of Support

The Ring Theory-Finding Your Circle of Support

The Ring Theory was created by breast cancer survivor and clinical psychologist, Dr. Susan Silk Ph.D., and arbitrator/mediator, Barry Goldman. The gist of it is this: Comfort in. Dump out. Who you comfort, and who you “dump” your grief on (in other words, who comforts you) will determine what circle of support you reside in.

Take out a piece of paper. In the middle of the page, draw a small circle. Label it with the patient’s name. The patient is in the center circle of support because the patient is the center of their cancer universe. It is everyone else’s job to support them. No one is allowed to dump on the patient. What does that mean?

The Patient- The Center

When Karen, a breast cancer patient was no longer able to bring meals to neighborhood functions or help with the kids’ school activities, people remarked at how hard it was without her, since they depended on her. Often, people say things like this to let the patient know they are important. However, this added a new layer of guilt to Karen’s shoulders, even though that was never the speakers’ intentions. So, don’t say anything to the patient regarding the effects of his/her cancer on you. Instead, listen to and comfort the patient. It’s about them—not you.

Circle of Support for a Spouse/Caregiver

What about their spouse or caregiver? They’re next in line for support. Draw another circle around the “patient” circle.  That’s the “spouse/caregiver” ring.  Only the patient is allowed to dump The spouse or caregiver. Anyone else should listen to and comfort the spouse or caregiver. So, it’s about the caregiver/spouse too—not you.

Circle of Support for Other Immediate Family Members

Next, draw another circle around the first, which will represent the immediate family. Immediate family can vent to anyone other than the patient and the spouse/caregiver.

One thing to note is that immediate family can vent with one another. They all share the same concerns and are able to comfort one another in a unique and special way.

Circle of Support for Extended Family, Friends, and ColleaguesRing Theory of Cancer Support

Draw a fourth circle around the immediate family circle. This one represents extended family and close friends.

A fifth circle will represent colleagues and friends. Each subsequent circle of people is a little more distant from the patient and their situation.

You never want to dump on or vent to someone in a circle closer to the patient than the circle you’re in.  For example, a friend would not dump on a parent or a spouse. They could, however, talk to another friend, or someone outside of the situation.

Circle of Support for Lookie-Loos

Lookie-Loos reside on the outer edge of the rings. These are people who have nothing at stake. They are the grocer or the guy that visits your garage sale, someone from church who hasn’t spoken to the patient or caregiver in months, or someone who happened to come upon the patient or caregiver’s blog.

Lookie-Loos can keep their thoughts to themselves. They aren’t allowed to dump on anyone, but they can offer comfort. In fact, many times, a lookie-loo has been a great source of encouragement to our family.

It’s Etiquette that Works in any Crisis

Hopefully, this explains in a nutshell, the etiquette of who to comfort (anyone who is hurting), and who to dump on (only people in a circle larger than yours—and never the patient).

Dumping or venting is anything that isn’t solely and directly supportive. Remember the adage, “It’s not about me.” While it may affect you, dumping on anyone in a circle closer to the patient than you are, can be seen as insensitive, selfish, and tacky, even when said with the best of intentions.

By the way, this works for any crisis someone may go through, health, financial, marital, etc.

This information and more is found in my 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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2018-01-22 07:00:36.


Internet Research

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

Benefits of doing your own research:

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

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

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

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

There are some drawbacks to internet research:

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

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

Internet Research isn’t a replacement for a doctor

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

How you approach internet research is important

“Just the facts, Ma’am.”

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

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

User-Input Based Sites

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

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

Reading as a writer

Pseudoscience

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

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

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

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

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

 

Using Trusted Resources

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

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

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

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

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

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

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

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

What are YOUR thoughts?

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

ABOUT HEATHER ERICKSON

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

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

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family, Photo by Everbranch Photography

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


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.


Interpreter

Have you ever thought about what it’s like to have limited English speaking skills? How would you handle things like a doctor’s appointment? There are things such as disabilities, and being a Limited-English speaking person (or LEP), which can affect your communication with your health care team and your access to support services.  Today, we’re going to learn why an interpreter is a crucial part of health care for people who aren’t fluent in English.

18%, or 47 million people in 2000, spoke a Language other than English at home. 8.1% of the population, age 5 and older spoke English less than “very well” (2000 US Census)

Check-in Downstairs

A few years ago, our local clinic was getting a major renovation. For 2 years they jostled departments around and several times, even moved where patients checked in. When they moved the check-in desk from the 2nd floor to the 1st floor, I witnessed something that made me see how hard something as basic as a doctor’s appointment can be for someone who doesn’t speak English well.

Use an interpreter if English is a second language, to get the best care

I saw a little old lady who I would guess was from Russia or the eastern bloc. She made it all the way up to the second floor, pushing her walker an inch at a time, only to discover they weren’t doing check-ins there anymore. She tried to get the attention of the woman at the desk. Finally, the woman noticed her and said, “There was a sign downstairs. You have to go back down.” There was little sign of understanding. After some exchange, the little old lady returned to the first floor with great effort. Fifteen minutes later, she returned. Her doctor was on the second floor. She looked completely exhausted from the up and down and up again.

I imagined how hard it must be to immigrate as an old woman; a whole new country, a new language, and health problems, as well. She needed an interpreter.

Who has a right to a translator or interpreter*?

If you’re hearing impaired, under the Title III of the Americans with Disabilities Act (ADA), your health care provider must provide you with an interpreter, if you need one in order to clearly communicate with your healthcare provider.

Under Title VI of the Civil Rights Act of 1964, discrimination based on national origin is prohibited. Executive Order 13166 issued in 2000, says that people have a right to meaningful access to federally funded programs and activities. Many individual federal programs, states, and localities also have provisions requiring language services for LEP individuals. These provisions are valid, even in “English-only” states. For more information, check out the LEP.gov website.

*The difference between a translator and an interpreter is described well at Language Scientific’s website. Check it out.

What’s the process of getting a translator?

If you or a loved one needs these services, contact your health care provider prior to your appointment, to let them know. Don’t hire your own interpreter and expect to be reimbursed. Most medical facilities contract with a third-party company which provides translators and/or interpreters on an on-call, as needed basis, at no cost to the patient. Covering the cost of the interpreter is one of the normal costs of operating a business for your clinic or hospital.

Just say “NO”

Occasionally, a health care provider may try to encourage you to bring a family member or friend to your appointment as a way to “save costs.” Say no. It is difficult for family members and friends to be neutral and translate everything they hear. Using family and friends as interpreters can also have a negative effect on your patient confidentiality. Instead, if you are comfortable, bring a trusted friend with to your appointment to keep an ear out for anything that might be lost in translation.

Also, Medical Interpreters are qualified in ways which even someone who is bilingual can’t compare to. They have expert knowledge of proper medical terminology, enabling them to facilitate communication effectively. This saves time and prevents medical mistakes based on miscommunication. They are also available on-demand, night or day.

“But I don’t need an interpreter.”

You may be wondering how this pertains to you. First, I hope that I’ve opened your eyes to something that many of us know little about. It also illustrates a picture of health care for all of us. It is a specialized area that many people don’t fully understand. It’s like they are speaking one language and the doctors are speaking another. This causes confusion and miscommunication. These are the root of many frustrations in life. Never be afraid to ask for clarification when you don’t understand something your doctor says or does.

For more information on using an interpreter see:

Office of Inspector General, Guidance and Standards on Language Access Services: Medicare Providers (Department of Health & Human Services)

Also, 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 15:36:36.


Advance Care Directive

What is an Advance Care Directive?

People often think of an advance care directive in the context of a terminal illness, such as cancer. But, this legal document should be in place for unexpected emergencies, such as car accidents, as well. It is also known as a healthcare declaration, a directive to physicians, a medical directive, a health care directive, and a living will. The exact terminology often depends on where you live.

Planning Ahead: Yes, You Do Need One!

Advance care directives are a powerful tool. They take away guilt and resentment that survivors may have regarding how someone has died. You’re able to be very specific about your feelings regarding end-of-life care, removing any doubts that various family members may have. This is what most people associate with an advance care directive (A.K.A. Living Will).

You should create one as soon as possible, ideally, before you are ever faced with a life-threatening accident or illness. Once you are ill, the process of putting together your advance care directive can seem emotionally overwhelming. It’ll make you acutely aware of the fact that you will, in fact, die long before you want to. It’s real, rather than theoretical, as I would be if you weren’t facing death. It doesn’t matter whether you’ve just been diagnosed or you’ve been fighting your cancer for a long time and can feel death knocking on the door of your life.

Advance Care Directive

Our Story

In the beginning of Dan’s cancer journey, he had a very hard time approaching the advance care directive. So, I got a booklet[1] and went through 2-3 questions each day with him. I asked him the questions and he answered. When I needed some things to be clarified I asked further questions so that there was no doubt in my mind as to what his wishes were. I wrote all of his answers down as he gave them.

This process took the logistical burden off of him and it made the process less overwhelming. We always stopped after 2 or 3 questions so it didn’t feel so awful. The other benefit to this was that he and I were communicating about his wishes. This is essential since I will need to ensure they were carried out as he wished. I was listed as his proxy, giving me the final say about his health care.

Power of Attorney*

Power of attorney gives someone you choose, the right to act on your behalf in financial or real estate issues. This sometimes scares people. Handing over that kind of legal power is a big deal. It’s actually not as concerning as it sounds. For one thing, you will choose someone who you really trust.

Secondly, there are different types of power of attorney. In real estate, we often have clients who are unable to be at closing. They give someone they trust, a limited, or “specific,” power of attorney. This allows the proxy to sign legal documents on their behalf in that instance only, or in all legal matters that are defined, for a limited period of time.

In most cases, power of attorney will end if it expires during the time the person granting it becomes incapacitated. So how does this help you in a medical emergency? You will want to make sure that you have a durable power of attorney in place. This is done by adding additional language to reflect your wishes.

Advance Directive

Medical Power of Attorney*

Power of attorney documents ensure your financial and legal issues will be handled if you are unable to, but what about medical decisions that need to be made? This is where the medical power of attorney comes into play. This is also known as durable power of attorney for healthcare, healthcare proxy, or healthcare agent. Just as in a power of attorney, you’ll want to make sure the proxy you choose is someone you trust to carry out your medical decisions if you are unable to.

Make it Legal*

No matter what, you should get in touch with an attorney who can give you the specific legal information that fits your situation. Laws vary from state to state, so you always want to make sure you are following your local laws. National Cancer Legal Services Network offers referrals to free legal services programs so that people affected by cancer may focus on medical care and their quality of life.

Your Proxy and Other Loved Ones

“Because I love you, I need to know what you want. Because you love me, you need to let me know, so I can know what to do.” -Dr. Vic Sandler

When looking for a proxy (which you’ll need), a spouse is ideal. Whoever you choose, they will need to be someone whom you can count on to carry out your wishes. They may need to be strong in the midst of other loved ones who don’t understand the decisions you’ve made.

Often, a patient decides that there is a point at which they no longer wish to keep fighting. This may be at the point when they are no longer able to express their wishes and must count on a proxy to carry them out. This may mean not opting for ventilation machines or feeding tubes.

The thought of losing the patient can be unbearable to family and friends. They may get angry with the proxy for making decisions that the patient would have wanted. The best prevention for this is to make it very clear to everyone in your family and close circle of friends what your wishes are. Also, tell your loved ones and your proxy, that you’re so grateful to have a proxy you can count on to carry your wishes out. Hearing these things from your lips will go a long way toward giving all of your loved one’s peace of mind.

It’s important that you talk to your children about this. Explain to them, in an age-appropriate way, why you’re making the decisions you’re making. They need to know that you’d rather be with them, but that your time is becoming short. You want the time you have together to be good time.

Family Care Conference

Your Advance Care Directive is More than Medical

After you’ve written or filled out your Advance care directive you’ll need to have it notarized. You then give it to your clinic to keep on file in the event there is a question of how to proceed near the end of your life.

The advance care directive addresses your specific health care desires as you near the end of life, but it isn’t limited to medical decisions. As part of this process, you can also express what you’d like done in your last days and hours.

  • Who’s going to be at your bedside?
  • Do you want everyone you know, there? Do you want time reserved for your closest family members?
  • Is there anyone you don’t want there?
  • Would you like music played?
  • Is there a special pet you’d like to hold?
  • How would you like to be dressed?
  • Do you wish to have a member of the clergy there? Anyone in particular?

The more, well thought out the process of death is, the better the death can be. The better your death is, the easier it is for your family to cope after you’re gone.

Footnotes:

[1] Advance care directive paperwork (or booklets) are usually available from your doctor’s office. While not essential, a pre-designed booklet made specifically for planning your advance care directive can be extremely helpful in this process. It will ensure that you have covered all of the bases and guide you through the process.

*Note: Please see our Legal Disclaimer.

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 2017-12-14 02:52:41.

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