Category Archives: Patients


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.


Oncology Care Teams

When someone is being treated for cancer, they will work with a team of medical professionals in the oncology department. This team approach ensures you get the best medical care possible. Who are some of the people on a care team?

Receptionist/Appointment Specialist

This will be the first person you talk to at the cancer center. They take your insurance information as well as your co-pay. When your appointment is done, they will make upcoming appointments that your doctor has ordered. These may include lab work, imaging, and future oncology appointments.

Lab Technician

The lab technician will take your blood, or urine and run any necessary tests on it.  If they are taking blood, they may access your port to do this. The results let your oncologist know a lot about your health. They can see whether you have signs of being immunocompromised. They can detect anemia and other issues such as low protein or magnesium levels. From this information, your doctor can make recommendations, including whether you will receive your treatment that day.

Care Coordinator/Patient Navigator

This may be a nurse, a social worker, or even a volunteer. He or she will be your “go-to” person. They will likely be one of the first people you will meet in the oncology department. Your care coordinator will learn as much as they can about you, your family, and your health. He/she will Find out what your needs are and then connect you to other people who can help with specific concerns. They may help you find financial resources, counseling and support services.

Our care coordinator’s name was Anne. She was so compassionate as she listened to our story. She even cried. Her kindness touched our hearts. We knew then, that to her, we were more than names on a chart. We were people with lives in the balance. When she learned that we had three young children at home, she told us about the Angel Foundation, a resource that helps families with a parent who has cancer.

Oncologist

Your oncologist is the person who pulls everything together. He or she had a goal of helping you live long and well. Communicating well with your oncology doctor. He or she will do their best to help you achieve your goals.

oncology care team

Palliative Care Specialist

This may be a doctor, a nurse, or a physician assistant. The palliative care specialist works with other members of your oncology care team to treat and symptoms of your cancer and the side effects of its treatment. They are especially skilled at pain control.

Oncology/Infusion Nurse

Asks intake questions about how you’ve been feeling since your last visit. It’s very important to tell him/her about any symptoms you’ve experienced, especially any changes. You will be asked to rate your pain on a scale from 1-10. Be honest about your pain so your care team can address it properly.

Tell the nurse about any changes in the medication you’ve been taking as well as any side effects you’ve experienced. Don’t forget about over the counter drugs. Something as simple as antacid can have interactions with your cancer medications. The medications you are taking also give your doctor clues as to your overall health. For example, if you are taking more pain medications than usual, it may indicate increased pain or the need to change to a more effective pain medication.

An infusion nurse will access your port, which is no easy feat, and they’ll administer chemotherapy. Nurses are trained to watch for side effects and other changes in a patient. I have great admiration for oncology nurses.

Physician Assistant

Physician Assistants do much of the same work that doctors do. In fact, it isn’t uncommon for people to think that a PA is an MD.  Often they will alternate appointments. This gives a patient another set of eyes to assess their health. It also allows the oncologist to see more patients without getting burned out. If you need an unexpected, last minute, appointment, it’s usually easier to get one with a physician assistant.

Every 3 months my husband gets a CT scan. A few days later, he sees his oncologist to talk about the scan results. The two monthly appointments in between scans, he sees a physician assistant. In his case, the PA is also a palliative care specialist. This is particularly helpful because he has a lot of pain.

Oncology Pharmacist

Oncology pharmacists are pharmacists who specialize in medications used to treat cancer. They understand how various drugs interact with one another as well as how to deal with the side effects of your cancer treatment. Oncology pharmacists regularly talk with patients about their treatment. They educate patients and caregivers about the cancer treatment and answer any questions they may have about their medications.

Chaplain

The chaplain in the cancer center does more than meets the eye. He or she is available to talk withOncology Care team patients and their family about spiritual matters. Having cancer makes faith a priority, even for people who haven’t given it much thought before. Chaplains who work in cancer centers are very good at supporting people when they are faced with life and death matters.

They not only serve the patients directly but also give counsel to the doctors and nurses who work in one of the most difficult medical fields. They are available to pray with patients and staff alike. Even though they will have a particular faith background, they are a valuable spiritual resource for patients and families from all faith traditions (or no faith tradition at all).

Oncology Social Worker

An oncology social worker is an expert in helping patients cope with life as a cancer patient. They can also help caregivers and the patient’s children. They can tell you about appropriate support groups as well as financial resources. If you have a non-medical question about living with cancer, an oncology social worker is a person you will want to talk to.

Psychiatrists in the Oncology Center

Living with cancer takes a tremendous toll on a patient, not only physically, but also emotionally and psychologically. Psychiatrists in the oncology center help patients with stress management, cognitive behavior therapy, pain management techniques, and counseling to maximize the quality of life for the patient and his or her loved ones.

Hematologist-Oncologist

This is a physician who specializes in the diagnosis and treatment of blood diseases including leukemia, lymphoma, hemophilia, anemia, and sickle cell disease. Your oncologist may also refer you to a hematologist if the effects of your cancer treatment are adversely affecting your blood health.

Pathologist

You’ll probably never meet your pathologist, but they are an essential part of your oncology care team. Pathologists are doctors. They are the people who look at cells, tissue, and organs, that are biopsied to determine whether a patient has cancer. Pathologists make the final diagnosis of cancer. They also look for mutations that impact what type of treatment a patient is given.

Registered Dietitian

While a lot of people tell their family and friends how they should and shouldn’t eat, a registered dietitian makes nutritional recommendations to patients based on science and the patient’s individual needs.

One of the first appointments Dan had after being diagnosed with cancer was with the dietitian who worked with the oncology department. She dispelled the myths of cancer nutrition and told us the hard facts. (1) 20% of people who die of cancer actually die of malnutrition. (2) She told us that best predictor of survival was maintaining or gaining weight. “If you feel like eating a Cinnabon, eat a Cinnabon,” she said. This ran contrary to what we had heard from a lot of people. She explained nutrition from the perspective of oncology. She said that Dan needed to concentrate on two things. He needed to keep his calories up and eat twice as much protein. That advice has served him well.

Ways to Offer Help when a Friend has Cancer

Radiologist

Radiologists are doctors who specialize in reading z-rays, scan, and other imaging technology. They help in the diagnosis process. You will have regular imaging throughout your cancer treatment, as well as follow-up scans to make sure you are still cancer free. The radiologist will read all those scans. Even though the radiologist is an important part of your oncology team, you will likely never meet him or her.

There is one exception. Interventional radiologists perform non-surgical minimally-invasive image-guided procedures. When my husband had the Gamma Knife procedure done to remove a brain metastasis, there was a radiologist as part of the team and we met him.

Physical/Occupational Therapists

These amazing people help cancer patients live as normally as possible. They teach you how to regain strength, balance, and skills that cancer may have tried to steal. They help with everything from therapeutic exercise to using tools that make life easier.

Dermatologist

Chemotherapy and radiation often have adverse effects on a patient’s skin. EGFR targeted therapies cause rashes and skin eruptions. Dermatologists will assess and treat these side effects. They also make recommendations for skin care in survivorship. In a survey of cancer patients, 84% said they had never been referred to a dermatologist and over half would have felt better if they had been. (3)

Surgeon

Before modern medicine, surgery was the only cancer treatment that had a chance of success. Surgeons work with your oncologist in a variety of ways. They often take the tissue sample for biopsies. They help diagnose and stage cancer. Surgeons help treat cancer when surgery is an option.

These are just some of the people who are part of your oncology team. There are so many people who affect your experience as a cancer patient. Often these team members overlap in what they do. They work together to give you the best, most complete care possible.

I am grateful to the people who have been a part of Dan’s care team over the years. They are special people who have always made us feel like he is in good hands.

What Are YOUR Thoughts?

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

ABOUT HEATHER ERICKSONThe Erickson Family

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

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. http://www.cancercenter.com/community/nutritional-support/tab/preventing-malnutrition/
  2. http://www.nbcnews.com/id/30812433/ns/health-cancer/t/push-fight-malnutrition-cancer-patients/
  3. http://www.mdmag.com/contributor/beth-mclellan-md-/2015/07/5-ways-oncologists-and-dermatologists-can-work-together-to-improve-cancer-care-

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.


palliative care specialist

Have you ever talked with a palliative care specialist? Do you know what they do, or how they could help you with your cancer treatment?

What a palliative care specialist does

“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness-whatever the diagnosis.

“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”[1]

Some issues that a palliative care specialist can help resolve

  • Anxiety
  • Shortness of breath/cough
  • Neuropathy
  • Weight gain/loss
  • Stress/depression
  • Nausea
  • Memory problems
  • Fatigue

How do we reconcile different goals?

Sometimes at the outset of care, a patient might feel like their goals aren’t being addressed, or that their goals are at offs with those of their doctor.

Here’s an example of 2 different points of view:

  • A doctor sees lung cancer as the problem.
  • A patient sees shortness of breath and fatigue as the problem.

Doctors are focused on healing the sick. That’s their purpose, and they usually do an exceptional job of fulfilling it. Unfortunately, they may fall short when it comes to addressing pain and symptoms (person-centered care).

This is where palliative care shines.  You can still receive treatment for cancer, and as you do, a palliative care specialist can work with your doctor to reduce the impact that symptoms and side effects have on your day to day life.

The goal of palliative care

The goal of palliative care is to improve quality of life for the patient and their family. This happens using a team approach. Doctors, nurses, specialists, chaplains, caregivers, etc. all form a team which works together to help patients:

  • Cure, or halt disease
  • Maintain quality of life
  • Coordinate care
  • Make informed decisions

This can begin at any stage of the illness.

Palliative care can, and should, be provided at any stage of the lung cancer journey. Treating symptoms and side effects is as important as treating the cancer itself. By reporting them as soon as they occur, your doctor can address them early on. You are then more likely to continue to get the care you need throughout the course of your treatment and beyond. The aftermath of treatment must also be considered and treated. This contributes to your overall quality of life.

But, few people understand what a palliative care specialist does…

In a 2011 national survey, the Center to Advance Palliative Care, American Cancer Society, and the American Cancer Society Cancer Action Network found that 70% of consumers weren’t at all knowledgeable about palliative care. Yet, once informed about palliative care and its benefits, 92% of consumers would consider palliative care for their families and believe that patients nationwide should have access to it.

…Including physicians.

Unfortunately, physicians tend to equate palliative care with hospice and only refer patients to this important service for end-of-life care.

American Society of Clinical Oncology believes cancer patients should have early access to palliative care. They even updated their guidelines in 2017, to reflect this:

“Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.”

Doctors should refer patients with advanced cancer to a palliative care specialist for the optimal treatment of issues that arise during the course of treatment. Palliative care relieves pain and symptoms, reduces hospitalizations, ER visits and unnecessary tests, and also increase the length of a patient’s survival. Oncology and palliative care specialists can (and should) collaborate at any stage of the disease to extend survival and contribute to a high quality of life.

Palliative care is not hospice.

Hospice patients are referred based on a prognosis of 6 months or less. Palliative care has nothing to do with your prognosis. It is need-based, based on need and suffering. Talk to your oncologist to increase coordination of care with a palliative care specialist.  If your oncologist is resistant to palliative care, talk to a palliative care specialist yourself. They can reach out to your oncologist to explain how palliative can increase the amount of time the patient can continue with treatment. This might just help y9our oncologist improve the level of care for other patients, as well!

Palliative care can be essential beyond treatment for lingering issues such as neuropathy and immunotherapy-related issues.

Another myth about palliative care

Palliative care is covered by insurance, and you can continue curative treatment while receiving these services. There are even home care specialists who deliver palliative care. They are also experts at monitoring and safely dispensing opioids. So if you are dealing with cancer-related pain which requires opioids, you can get more knowledgeable help. Give it a try and see what you think.

Palliative care specialists see the person beyond the patient, beyond the disease.

For more resources on palliative care, check out www.getpalliativecare.org.

What Are YOUR Thoughts?

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

ABOUT HEATHER ERICKSONThe Erickson Family

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

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Public Opinion Research on Palliative Care. Research Commissioned by the Center to Advance Palliative Care, 2011, pp. 1–15, Public Opinion Research on Palliative Care.


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

Originally posted 2018-05-21 07:00:21.


No two cancers are alike.

I recently read an article about John McCain and Jimmy Carter.[1]  Apparently, a lot of people wonder why their cancers could have had such different outcomes. The thinking behind this is something most cancer patients encounter throughout their journey. People often don’t realize that no two cancers are alike. Today I’ll share some of the reasons for this, and what it means for cancer patients and their loved ones.

Where cancer originates is what kind of cancer the patient has.

One of the reasons no two cancers are alike is because they originate in different areas of the body. For example, Jimmy Carter was diagnosed with melanoma. This is a dangerous form of skin cancer. John McCain was diagnosed with glioblastoma. A glioblastoma is a dangerous form of cancer in the brain. Jimmy Carter’s melanoma at one point metastasized (or moved) to his brain, but it was still melanoma.

My husband Dan was diagnosed with non-small cell lung cancer. By the time they found it, it was in his lymphatic system. There was actually very little of it in his lungs because it metastasized so quickly. It was too late to cut it out. Even though it was in his lymph nodes when they found it, they found lung cancer cells there. At one point, like Jimmy Carter’s melanoma, it metastasized to his brain, but it was still the lung cancer cells that were in that brain tumor.

Why does this matter?

It’s important to realize that no two cancers are alike because they are treated differently. Some forms of cancer have more treatment options.  Some of these options have been better researched because there are more research dollars being directed at certain cancers than others. Melanoma, the cancer that metastasized to Carter’s brain, was treatable with a new immunotherapy. Glioblastoma, the form of cancer McCain suffered from, doesn’t respond to immunotherapy, and is extremely difficult to treat, especially when advanced.

Some cancers are curable, even at stage IV.

Different cancers have different staging systems.  Even when a system sounds the same (for example, “stage I, II, III, or IV”) the stages don’t necessarily mean the same thing. Lymphoma is a cancer that can be cured, even at stage IV.

“Stage III-IV lymphomas are common, still very treatable, and often curable, depending on the NHL subtype. Stage III and stage IV are now considered a single category because they have the same treatment and prognosis.” [2]

When someone has seen or experienced remission and even a cure of one of these “curable” cancers, it can be difficult to understand the devastation someone feels when they are told their cancer is “incurable.”

No two cancers are alike because of mutations

For a long time, lung cancer patients were relegated to “ugly step-stepsister” status; due to the impression most people have that lung cancer patients deserve to get cancer because cancer is a smoker’s disease, caused by bad behavior.

First, let me say that no one deserves cancer. Having seen this brutal disease up close, I wouldn’t wish it on anyone, nor turn away and cluck my tongue if someone got it due to an “unhealthy lifestyle.”

The medical community is learning that more people get lung cancer who have never smoked (or haven’t in years) than they realized.

We were very fortunate to learn that Dan had an EGFR mutation. This is a mutation which set off a firestorm of research in the lung cancer world. With the possibilities that mutations present, they see hope for fighting this disease. So, more research dollars are being directed toward the least researched cancer and more treatment options are unfolding for lung cancer patients.

Thanks to this research, and new drugs, Dan has lived for 6 years with stage IV lung cancer. In 2012, he was given 6 months to live.

Asking for Prayer

No two cancers are alike because no two patients are alike

There are so many variations between patients. One particular treatment can work great for one patient and terrible in another. Some patients tolerate a treatment while others become ill to the point of death. Younger patients tend to do better than older patients on cancer treatment. Patients who have other underlying illnesses have a harder time than patients who start out healthier.

Support systems matter

No two cancers are alike because different patients have different levels of support. A strong support system can have a profound impact on both patients and caregivers.[3]  They are more likely to be compliant with treatment and understand their doctor’s recommendations. A good support system also helps combat depression that so commonly occurs in cancer patients.

In conclusion…

It’s natural to wonder why one person can live with cancer for a long time while another succumbs to their illness. Hopefully, this post has shed some light on the variables that impact the outcome of a patient’s disease. It’s important to be aware that a person’s experience with their cancer is as individual as they are.

What Are YOUR Thoughts?

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

ABOUT HEATHER ERICKSONThe Erickson Family

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

 

My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Sisson, Paul. “Why Did Carter and McCain Have Such Different Brain Tumor Results?” Sandiegouniontribune.com, The San Diego Union-Tribune, 28 Aug. 2018, www.sandiegouniontribune.com/news/health/sd-no-cancer-mccain-20180824-story.html.

[2] “Lymphoma – Non-Hodgkin – Stages.” Cancer.Net, American Society of Clinical Oncology, 2 July 2018, www.cancer.net/cancer-types/lymphoma-non-hodgkin/stages.

[3] “Statistics Show the Importance of Psychosocial Support for Those Impacted by Cancer.” Imerman Angels, Imerman Angels, imermanangels.org/psychosocial/.


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.


Scanxiety

There’s a word that’s unique to the cancer experience. Scanxiety. Most people are familiar with anxiety. There are many types of anxiety, including (but not limited to): generalized anxiety disorder, social anxiety, phobias, and PTSD (post-traumatic stress syndrome).

Scanxiety is a form of situational anxiety or acute stress reaction disorder.

Because of the nature of cancer, patients are already experiencing chronic stress, or the stress of demands that seem endless, with little hope in sight for long stretches of time. When you add an additional stressor to this, it can feel overwhelming, leading to physical symptoms of stress and anxiety for the patient, and his or her family members.

The first time you experience scanxiety is when you suspect you have cancer and are in the process of having it diagnosed—or ruled out as a concern.

Our Story

When Dan felt hard, enlarged lymph nodes, just above his left collarbone, we knew something was wrong. The soonest the doctor could see him was three days later. During that time, we looked at all the possibilities, and the most likely cause of his symptoms was cancer.

Upon examining him, the doctor said, “I can’t tell you exactly what it is, but I can tell you that it’s serious.”

It’s cancer. How bad is it? I didn’t dare say what I was thinking, out loud, in that office.

“Do you have any plans this afternoon? Can you stay for more tests?”

Of course, we stayed. Dan was shuffled from one place to the next. The lab, the room where they performed an ultrasound, the x-ray department. Then, we waited. That was our first dose of scanxiety. Within the next two weeks, we would experience scanxiety as we awaited results from CT scans, MRI’s, and a PET scan.  Each test would add a little more information to Dan’s medical chart. Combined, we would learn the full scope of what we were looking at.

What scanxiety feels like:

When scanxiety hits, you experience many of the symptoms of acute stress (1):

  • Emotional distress — some combination of anger or irritability, anxiety and depression, the three stress emotions.
  • Muscular problems including a tension headache, back pain, jaw pain and the muscular tensions that lead to pulled muscles and tendon and ligament problems.
  • Stomach, gut and bowel problems such as heartburn, acid stomach, flatulence, diarrhea, constipation, and irritable bowel syndrome.
  • Transient over-arousal leads to an elevation in blood pressure, rapid heartbeat, sweaty palms, heart palpitations, dizziness, migraine headaches, cold hands or feet, shortness of breath and chest pain.
lung cancer awareness
Image courtesy of stockdevil at FreeDigitalPhotos.net

You’re focused on one thing:

…the pending results of a scan.

Those results will affect your life to a degree that is difficult for most people to comprehend. Scans can trigger a lot of emotions. If cancer has been growing and you’ve started a new treatment, you might feel hope and anticipation. “Is the treatment working?”

Ironically, if things have been stable, fear and anxiety can rear their ugly heads. The thought of recurrence is lurking in the back of your mind. “What if the cancer is back? I had a cough last week.”

Oh, yeah. That’s right. I’m on a limited timetable here.

Once diagnosed, many people experience scanxiety again each time they have a CT scan, x-ray, MRI, bone scan, or any other imaging test that will shed some light on whether the cancer is being effectively treated or whether it is progressing. You can’t help but focus on the things that you’ve pushed to the back of your mind. Every scan is a step back into reality.

How long do I have, Doc?

From the results, you learn what your prognosis is. The doctor tells you what your treatment options are. You make decisions. You decide on your treatment plan and wonder how you’ll proceed with the rest of your life.

  • Do you continue to work—can you continue to work?
  • Do you put down the deposit on your annual family vacation?
  • What minor or major life changes will happen as a result of what we learn from the next scan?
  • Will the next scan be the beginning of the end?
  • Will I be able to continue to live as I have been?
  • Is cancer in a new place? What can I expect?

The feeling of a good scan is amazing.

You have a 3-month extension on life. It feels like you’ve been strapped into the electric chair and the governor called.

I’m writing about scanxiety today because this Monday, my husband, Dan will be having two different kinds of scans: a brain MRI, an upper body/chest CT scan. So, we are experiencing scanxiety. If you are a person who prays, it would mean a lot to me if you would keep Dan and our family in your prayers, not only for his health but for our peace of mind, as well. He will find out the results of those scans a few days later when he meets with his oncologist. The days leading up to the scans and following, while we await the results, are difficult ones.

There are ways to manage scanxiety.

The National Institute of Mental Health gives the following suggestions for dealing with stress (2). These can be applied to scanxiety as well.

The effects of stress tend to build up over time. Taking practical steps to manage your stress can reduce or prevent these effects. The following are some tips that may help you to cope with stress:

  • Recognize the Signs of your body’s response to stress, such as difficulty sleeping, increased alcohol and other substance use, being easily angered, feeling depressed, and having low energy.
  • Talk to Your Doctor or Health Care Provider. Get proper health care for existing or new health problems.
  • Get Regular Exercise. Just 30 minutes per day of walking can help boost your mood and reduce stress.
  • Try a Relaxing Activity. Explore stress coping programs, which may incorporate meditation, yoga, tai chi, or other gentle exercises. For some stress-related conditions, these approaches are used in addition to other forms of treatment. Schedule regular times for these and other healthy and relaxing activities. Learn more about these techniques on the National Center for Complementary and Integrative Health (NCCIH) website at (www.nccih.nih.gov/health/stress ).
  • Set Goals and Priorities. Decide what must get done and what can wait, and learn to say no to new tasks if they are putting you into overload. Note what you have accomplished at the end of the day, not what you have been unable to do.
  • Stay Connected with people who can provide emotional and other support. To reduce stress, ask for help from friends, family, and community or religious organizations.

What Are YOUR Thoughts?

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

ABOUT HEATHER ERICKSON

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

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family

Footnotes:

https://www.nimh.nih.gov/health/publications/stress/index.shtml

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