The Importance of Early Detection in Ovarian Cancer

  “Ovarian cancer is a serious and potentially deadly disease.”

As a survivor of ovarian cancer, I am committed to using my experience to raise awareness and educate others for an earlier diagnosis.

Recent statistics from OCRA (The Ovarian Cancer Research Alliance) reveal that ovarian cancer ranks as the 11th most common cancer and the fifth leading cause of cancer-related deaths among women. Furthermore, a woman's lifetime risk of developing ovarian cancer is reported to be 1 in 78. Ovarian cancer is often diagnosed at an advanced stage because early symptoms can be subtle or absent, making early detection difficult.

Unfortunately, certain groups of women have a much higher risk of acquiring ovarian cancer. For example, women of Ashkenazi Jewish decent or women who have never had children are at a higher risk. For this reason, it is vital to know your familial history. If you have a family history of breast, uterine, ovarian, or colorectal cancer this increases your risk.

Your family medical history can provide valuable information about potential genetic or hereditary risks for various health conditions, including ovarian cancer. Many health conditions, including certain types of cancer, can have a genetic component.

The BRCA1 and BRCA2 genes are critical in understanding the genetic risk factors for certain cancers, including breast and ovarian cancers. Mutations in these genes can significantly increase the risk of developing these cancers. Individuals with a strong family history of breast and ovarian cancers should consider genetic testing to identify mutations in these genes.

It is estimated that 1 in 40 women of Ashkenazi Jewish descent have a BRCA mutation. Also, women of Jewish descent have a higher risk than the regular population of being BRCA positive. Women with a BRCA mutation have a 50% lifetime risk for ovarian cancer.

Age is a significant factor in the risk of developing ovarian cancer, and the risk tends to increase with age, especially after menopause. However, it is important to note that having one or more risk factors does not automatically mean that an individual will develop ovarian cancer, and many women with ovarian cancer have no known risk factors.

Prior to my diagnosis of ovarian cancer, I would characterize my health as excellent. I had been a physically active woman for the last 50 years, eating a healthy diet and weighing in at the same weight I was in high school. My only family history of cancer is a maternal grandmother with stomach cancer in her sixties and being of Ashkenazi decent.

Vaginal bleeding was my only symptom. This led me to call my gynecologist, who quickly ordered a vaginal ultrasound which found a large ovarian tumor. Based on my oncologist’s recommendations, I decided to undergo a total hysterectomy. My pathology report indicated that I had a highly aggressive tumor and chemotherapy was ordered.

It was shocking for me to get this diagnosis, particularly since I led such a healthy life for decades. I was fortunate enough to get an early diagnosis and am cancer free at this time.

Breast cancer has received widespread public attention. In contrast, ovarian cancer has often been less talked about, and there are several reasons for this. One challenge is that ovarian cancer is often asymptomatic or presents with vague symptoms, making early detection difficult. The lack of routine screening tests, like mammograms for breast cancer, adds to the complexity of detecting ovarian cancer at an early stage.

Discussions related to ovarian cancer may involve sensitive topics such as reproductive health, as the ovaries are essential for fertility. This has contributed to a certain level of discomfort or taboo surrounding this subject for both women and their healthcare providers.

Ovarian cancer can be challenging to treat, and the statistics are very concerning. The outcome for individuals diagnosed with ovarian cancer depends on various factors, including the stage at which the cancer is detected, the type of ovarian cancer, the overall health of the individual, and how well they respond to treatment.

The lack of a routine screening test, like the Pap smear for cervical cancer, also contributes to the challenges in early detection. The advanced stage diagnoses that many experience may be due to the lack of noticing and reporting specific early symptoms to your health practitioner, effective screening methods and the need to educate many health care practitioners of the early signs of this disease.

The symptoms of ovarian cancer can be subtle and easily attributed to other less severe conditions, which can lead to delayed diagnosis.

Here are some common symptoms that may be associated with ovarian cancer:

• Pelvic or abdominal pain: Persistent pain or discomfort in the pelvic or abdominal region is a common symptom associated with ovarian cancer.
• Bloating: Feeling consistently bloated, especially if it persists for more than a few weeks, can be a sign.
• Trouble eating or feeling full quickly: A sudden change in appetite, difficulty eating, or feeling full despite eating very little can be indicative of various health issues, including ovarian cancer.
• Frequent urination: Increased urgency to urinate and more frequent bathroom trips.
• Vaginal bleeding: This symptom needs to be reported to your gynecologist immediately.
• Changes in bowel habits: Any significant changes in bowel habits, whether it's constipation or diarrhea, should be discussed with a healthcare professional.
• Unexplained weight gain or loss: Sudden and unexplained changes in weight can be a symptom of various health issues, including ovarian cancer.
• Fatigue: Feeling unusually tired or having low energy levels consistently.
• Back pain: Pain in the lower back may be a symptom.

It is also crucial to note that these symptoms can be indicative of various conditions, and experiencing them does not necessarily mean someone has ovarian cancer. However, if these symptoms are persistent and unexplained, for several weeks, it is important for individuals to consult with a healthcare professional, particularly a gynecologist.

Consider requesting a vaginal ultrasound and a CA 125 which is a biomarker test for ovarian cancer to rule out potential concerns. Early diagnosis can significantly impact the effectiveness of any necessary interventions and is crucial for improving survival rates in ovarian cancer.

Studies indicate that specific risk factors elevate the chances of developing ovarian cancer, whereas other factors may lower a woman's likelihood of contracting the disease. It is crucial to bear in mind that the presence of risk factors does not guarantee the development of ovarian cancer for all individuals.

Some women who get this type of cancer have no known risk factors.

Factors that may increase your risk for ovarian cancer:

• A family history of ovarian, breast, uterine or colorectal cancer
• Increased age
• Genetic mutations like in your BRCA genes https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet
• Being post-menopausal
• Ashkenazi Jewish descent (this group of individuals have a higher risk of getting ovarian cancer).

If you think you may be at risk for ovarian cancer, you should speak with your doctor, preferably your gynecologist.

Factors that can decrease your risk for ovarian cancer:

• The use of oral contraceptives
• Pregnancy
• Breastfeeding

Please be vigilant and advocate for your health care. Be attuned to any unusual or persistent symptoms mentioned above, and if they persist for more than a few weeks, take proactive steps to seek medical attention. Your awareness and proactive approach can make a significant difference in early detection and overall health outcomes.

If diagnosed with ovarian cancer, it is essential to research your disease to enhance your understanding and recognize that you may not have all the answers. A wealth of information is accessible online, including reputable sources like OCRA (Ovarian Cancer Research Association), National Ovarian Cancer Coalition (NOCC), the National Cancer Institute, and the Clearity Foundation. These sites provide evidence-based research, and links to them can be found at the end of this article.

Facing a diagnosis of ovarian cancer and undergoing chemotherapy was a difficult journey for me and resulted in many complex emotions. I found out that I could embrace both happiness and sadness independently and simultaneously.

I found out that as I was facing adversity, with two additional chemotherapy treatments, along with a hospitalization for bilateral pulmonary blood clots, I was able to keep a sense of humor. Sharing laughter with my friends and family, created a sense of connection and support for me during that difficult time.

At the beginning, I feared the unknown. Not knowing how I would respond to treatment, along with how I would proceed after treatment was completed. There were sad days of not having an appetite or not having the energy to even go for a walk. My ability to find moments of happiness and acceptance, gave me the strength and resilience I needed.

Looking ahead several months to taking one day at a time was challenging for me. I found it helpful to make plans for the future, whether it was having a friend over for coffee, going out to lunch or planning a weekend trip to celebrate my completion of chemotherapy.

Early detection is associated with higher survival rates.

My hope for increased public awareness, open conversations, and improved efforts in early detection and research for ovarian cancer is crucial. The progress made in breast cancer awareness, early detection, and treatment options has been significant, and there's great potential for similar advancements in the field of ovarian cancer diagnoses.

Ovarian cancer is relentless! If there is one thing, i would ask that each of you who read this article to take away from my experience, is to gain an understanding of the symptoms and risk factors associated with ovarian cancer, coupled with undergoing annual gynecological check-ups. This will lead to a diagnosis at an earlier, more treatable stage. Furthermore, advocating for research to enhance screening methods and develop more effective treatments is crucial in minimizing the impact of ovarian cancer on women's health.

I have listed some valuable resources below:
Ovarian Cancer Research Alliance; https://ocrahope.org/

• National Ovarian Cancer Coalition; https://ovarian.org/
• the National Cancer Institute; https://www.cancer.gov/
• The Clearity Foundation; https://www.clearityfoundation.org/
• Nancy’s list; https://nancyslist.org/
  Nancy’s list is one of the most comprehensive and valuable catalogs of resources I have come across.
• The Society of Gynecologic Oncology; https://www.sgo.org/
• Center for Advancement of Cancer Education; https://beatcancer.org/

©
Linda Winkler Garvin
Health Advocacy & Consulting
Founder & President; Patient Advocate Bay Area, Inc.
E-mail: lindawgarvin@gmail.com
Phone: (510) 520-0186
Web: patientadvocatebayarea.com

Making Memories: Wonderful Activities During Covid-19

Although thinking about and reviewing our lives can be difficult, taking time to process whatever had been special to us over the years, may provide some solace to ourselves, our family and our friends. It is also a great way to utilize the extra time some of you may have as we are practicing self isolation.

I am suggesting some possible projects to accomplish this task. The first idea is preparing and recording a DVD or video. Having a friend, hiring someone or doing a self made video discussing or recalling the special moments of your life is one approach. This idea can also be applied to having you ask a family member or anyone meaningful in your life if they would like a video of their life done that you could help them with.

"Important life lessons can be shared in this manner. It can be shown to children as they get older so they can understand the meaning of what is shared."

This is a great project, since most of the work for making a video, requires information gathering, organizing and focusing on the aspects of a person’s life that they want to highlight.It is extremely helpful to have an outline or timeline of the specific areas you would like to include. When doing a video of yourself or someone else, it is helpful to write some questions and responses to review ahead of time.

This is a wonderful way to let the special people in your lives know how you feel about them.

Important life lessons can be shared in this manner. It can be shown to children as they get older so they can understand the meaning of what is shared. It is important to have the individuals who will be speaking in the video, practice their responses out loud, since this will add to their confidence by helping them to be prepared and comfortable with the content.

For example, I hired a videographer to make a video of my parents’ life. My preparation included giving each of my parents a few questions to review and answer ahead of time. I provided the questions a week before the video session. The video was completed a few years before they passed and is a very special reminder of their unique personalities and relationship together.

Videos can include important transformations about one’s life from childhood to adolescence and into adulthood. They can serve as a wonderful support for individuals who will be viewing the video.You can choose anytime in your life to begin your video. It is only limited to the amount of time you would like the video to be, which can be pricy if it is too long and you have hired someone for this task.

If the idea of a video poses too many challenges, a second idea is creating a memory book. One can put important and interesting information about their life into a memory book to use as a keepsake. You can do this for yourself or help another person or family member with this interesting project. Making a memory book is another wonderful and beautiful way to document special times in your life. You can use photographs to illustrate significant memories throughout your life.

Many individuals have been doing scrapbooking as a way of remembrance for several years. You could purchase an album for this use and divide it into different categories, in a similar fashion to the way it was explained earlier for the video. Since you are in charge of what goes into the memory book, you can chose from an assortment of subjects. Birthday cards, celebrations, athletic events, recipes, photographs of friends, graduations, illustrations, poems, vacations or anything you would like to add. Similar to the outline for the video, you need to choose the content for your memory book. By choosing your content, you can have themes that are divided into various sections.

There are two hints on making a memory album. One is to use only acid free paper and the other is to choose a type of notebook/scrapbook that can have pages added. Some individuals may find it easier to write letters to special members of their family. Make sure you leave instructions on where to find the letters and address them on the envelope so the correct person is opening the letter/s. Writers can also utilize a diary or blog to leave a history of significant events in your life.

Another idea is a memory box. A memory box is open to anything you want to include. Souvenirs, photographs, tickets to an event, a family tree you have put together, achievement metals and pieces of jewelry that you may want to pass on.

Any of these ways to leave memories behind can serve as a lasting treasure. It is a wonderful way to have your life stories live on in a meaningful way.

There is an abundance of help online for creating all of these ideas and leaving the best memories of yourself and your loved ones.

Featured on the Greater National Advocates website: GNANOW.org

Healthy Sleep Tips During The Covid-19 Pandemic

A good night’s sleep is a very important component in maintaining health. Insomnia is a common sleep disorder that can make it hard to fall asleep, causing you to wake up throughout the night and not be able to get back to sleep. With our current self-isolation policies, many are more prone to anxiety and stress, which affects their ability to sleep throughout the night.

According to the CDC, adults need approximately seven hours of sleep a night and many people aren't getting it. Not getting enough sleep can have a negative impact on your ability to focus on the important tasks you need to perform throughout the day, your energy level and your quality of life. Lack of sleep can also worsen health conditions. Individuals who are sleep deprived may experience drowsiness, difficulty concentrating, remembering details and irritability.

In order to be able to avoid the adverse effects of insomnia, it is a good idea to be able to identify the types of activities, medications taken and beverages and foods ingested that can interfere with sleep, so you can have an opportunity to modify your behavior and perhaps reduce your chances of experiencing insomnia.

Here are some tips which may help improve the quality of our sleep:

1. Establish a Regular Bedtime Routine and Adjust Bedroom Temperature

It is also a good idea to establish a regular time to go to bed, as well as getting up in the morning. In addition, if a bedroom is too hot or too cold, this may affect one’s ability to get to sleep. It is important to take into consideration that for some peri-menopausal and menopausal woman, a good night’s sleep is dependent on different temperatures throughout the night.

2. Reduce the Level of Stimulation before Bedtime

To improve the quality of your sleep, first start by decreasing the noise level in your bedroom or room you are spending the last one to two hours in prior to bedtime. Whether you are watching television or listening to music, start to lower the volume slightly at least one hour before bedtime. Also, begin to dim the lights around an hour before retiring. Trying both of these suggestions each will decrease the amount of stimulation your senses and body are exposed to. It is also a good idea to avoid keeping or using a computer in your bedroom.

3. Avoid Foods and Beverages That Negatively Effect Sleep

The type of foods and beverages you consume both have an enormous impact on your ability to get to sleep. In order to minimize negative impacts on sleep try the following food and beverage suggestions:

• Any food that is spicy, hot or has the potential to cause gastrointestinal upset should be avoided at dinner time.
• Avoid caffeine containing beverages [tea, coffee, diet pepsi, mountain dew or chocolate] at least eight hours prior to bedtime.
• Contrary to what you might think, alcohol can interfere with sleep. If you want an alcoholic drink, you may want try abstaining from alcohol two hours prior to bedtime.
• Ingesting protein prior to going to bed requires the body to work hard to metabolize this type of food interfering with the body’s ability to relax and induce sleep.
• Limit the amount of fluids you drink before retiring. If you have an overactive bladder, you may want to limit fluids 2-3 hours prior to bedtime.
• A light evening snack that contains Tryptophan may assist in relaxation and aid in falling asleep. Some examples of foods that contain Tryptophan are cheese, eggs, cottage cheese, milk, nuts, brown rice, bananas and turkey.

4. Avoid Medications That Interfere With Sleep

It is a wise idea to check the medications you are taking with your pharmacist to see if any of these prescription or non-prescription medications could be affecting your sleep. In addition, if you suffer from chronic pain, check with your physician to make sure that your pain medication is adequate throughout the night so bodily discomfort and pain is not contributing to your insomnia.

Some non-prescription medications that contain caffeine, which can interfere with sleep, include Darvon Compound, Fiorinal, Excedrin, and Midol. Some drug categories that negatively affect sleep quality are Corticosteroids, Diuretics, Antidepressants, Beta blockers, Nicotine and Alcohol.

5. Develop an Effective Exercise Program

Although a routine exercise program may reduce or help prevent insomnia, one should not engage in aerobic activity at least three hours before bedtime. Some individuals feel that gentle stretching exercises assist their body to relax if done 1-2 hours prior to bedtime. Progressive relaxation, imagery, meditation and certain relaxing breathing techniques have been reported as helpful for some people if practiced before bedtime.

6. Take a Bath to Relax a few Hours prior to Bedtime

Many people find a bath relaxing prior to bedtime. However, with some women, if the bath is within an hour of bedtime the warm bath water can trigger hot flashes, which can interfere with sleep. So plan your bath time accordingly.

7. Practice Relaxation Techniques
Educate yourself about various relaxation techniques, including, but not limited to progressive relaxation, meditation or imagery 1-2 hours prior to bedtime. Remember to use your bedroom for sleep, relaxation and sex. There are numerous web sites and u-tube videos with instructions on practicing mind- body techniques for relaxation.

8. Do Not Concentrate on Mental or Emotional Problems

Along with relaxation techniques, remember that your thoughts and images prior to bedtime will also affect your sleep. If possible, try to establish a habit of not focusing or ruminating about problematic or painful emotional issues at least one hour prior to bed time.

9. Bed and Pillow Comfort

Check your mattress, box spring and pillows to make sure they are not worn out or have “lost their support”. Ask yourself if you have developed any neck, back, or hip pain over the past few months. If so, you may need to purchase a new mattress, box spring and pillows.

10. Keep a Sleep Diary

A sleep diary can be very helpful, revealing valuable cues as to some possible causes of your insomnia. A helpful recommendation would be to bring your sleep diary when meeting with your physician or nurse consultant. After reviewing the specific details from this diary, you could receive valuable advice on improving your sleep. With a sleep diary, you would document a record of some of your day time and evening habits that might reveal some habits that are thwarting your ability to fall asleep or stay asleep throughout the night. You can check with your health professional to see if they would prefer one week or one month of documentation.

This is a list of some helpful information to include in your sleep diary:

• Include the time of the day for each piece of information documented.
• A complete list of all the medications including vitamins, non-prescription and prescription medications you are currently taking each day.
• List all the foods [including snacks] and beverages [including alcohol] you consume in a 24 hour period.
• List any caffeine or nicotine ingestion.
• Include your bedtime regime [time you went to bed, how long it took to fall asleep, how many times you woke up during the night and behavior that occurred as a result of waking up, total hours of sleep, quality of sleep and any other pertinent data.
• Include your general mood and stress levels, including day and night time hours, as well as when you awaken in the middle of the night.

If you have not had improved sleep after trying these suggestions, you may want to request a referral to a Sleep Clinic or Sleep Specialist.

Featured on the Greater National Advocates website: GNANOW.org

Six Essential Items When Communicating with the Insurance Company

Despite the best efforts of most doctors, claims are frequently denied due to information that is inaccurate or missing from your medical forms/bills that are submitted by the doctor’s office to the insurance company. To help avoid unnecessary claim denials, have the following six items available for all written and phone communications, as well as hospital or health related visits.

• Group insurance name and policy number.
• Insurance identification number
• Date of birth
• Date health coverage commenced
• Your social security number
• The name, social security number and date of birth of the person who is the main policy holder

Reducing the Chances of Claims Being Denied

At the onset, it is fundamental to thoroughly understand your health insurance policy. Knowing what is covered and not covered will reduce the number of conflicts you will encounter with your provider. In particular, it is important to know the following information about your health insurance to reduce your chances of having a claim denied.

1. First and foremost, be aware of what conditions are covered, along with the limitations of your policy.
2. Determine if an authorization is required for specialized services or an inpatient hospital stay.
3. Know the maximum benefit coverage.
4. If you cannot find the answer in your policy or if you don’t understand the wording, contact the insurance company to clarify anything that is not clear or that you don’t understand.
5. Another good practice is to contact the doctor’s office before an appointment is made to make sure he/she still has a contract with your provider, since the web site or the printed sheet of listing physicians may not always be up to date.
6. Also, be aware that when you receive a written authorization for a specific procedure, surgery or physical therapy, there is usually a specific time frame given with a beginning and ending date. The authorization will not be valid and payments will not be made if you do not adhere this “window of time” listed in your authorization letter.

Insurance Essentials You Need to Know

Anyone who has ever attempted to get approval from a health provider to see a specialist or start on a new medication or treatment knows the overwhelming and frustrating challenges that can be encountered. It may be difficult, for example, for patients suffering chronic pain to obtain coverage for medical or alternative procedures such as acupuncture or guided imagery, or certain types of medications. The purpose of this article is to highlight some important things to know about your health insurance policy, as well as provide some tips for communicating with your insurance representative.

Whether you are requesting information about your current insurance plan or are applying or transferring to a new plan, it is essential to understand the benefits and limitations of your insurance policy. Although there are numerous pieces of information to review and questions to ask your insurance carrier, some of the conflicts, with insurance carriers, that individuals with chronic health problems have shared with me over the years, have led me to highlight a few of the most critical concerns.

Each year your insurance company can make major policy changes. These changes usually commence at the beginning of the calendar year, but occasionally could occur throughout the year. In addition, a specialist previously covered by your health plan that you have been considering making an appointment with could decide to discontinue their contract with the insurance carrier during the year due to a business change in their group practice. If you are considering going to a new physician, always review your insurance plan by checking their web site or by phone to check if this physician is still in your provider network.

One significant area frequently neglected by many people is remembering to keep up to date with your health insurance coverage plan and any policy changes that have taken place from one year to the next. For example, if there are any changes in your marital status, new dependents or any changes made to your plan during open enrollment at your work place, you need to contact your insurance company and ask how you would make these additional changes or revise your current health plan to ensure you will have the coverage you need and want.

In order to be prepared in dealing with health insurance providers, there are a few basic questions that need to be answered.

First, are the current medical providers and the hospital you currently utilize included in your plan’s network?

Second, do you need authorization from your Primary Care Provider to see a specialist?

Third, if you choose a physician outside the provider’s network, will you be covered?

And finally, can you change Primary Care Providers?

In addition, if you need to be admitted to the hospital or go to a clinic for a procedure, always confirm that all of the medical providers [i.e. anesthesiologist, radiologist, hospitalist, specialist…], including the facility is contracted with your health plan. The facility or the individual physicians may have their own billing system. If so, they need to be contracted with your health plan to be considered as an in-network provider.

Six Essential Items When Communicating with the Insurance Company
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Helpful Tips on Being Supportive to a Friend or Loved One with Cancer

The information below is meant to be helpful for the friends, family and caretakers of an individual diagnosed with cancer. The tips provided below were garnered from my professional and personal experiences.

This article is divided into the following sections:

1. Keys to Preparing Yourself
2. Tips on Individual Ways to Support a Friend or Loved One with Cancer
3. Thoughtful Gestures or Gifts
4. Suggestions for Communication with Your Friend or Loved One
5. Support through Online Communities
6. Supportive Comments You Can Say that Show Kindness and Support
7. What Not to Say
8. Conversations with your Spouse or Partner
9. Cannabis for Symptomatic Relief
10. Post Treatment Support

Before a “you initiate conversation” with a person diagnosed with cancer, it is vital that you first think ahead to prepare yourself.

1) Keys to Preparing Yourself

Before you begin a conversation, please take time to process what you have been informed and consider these hints: Remember, it is about your friend, not about how you feel. Prepare to be disappointed if your friend cancels a date or fails to call you or return calls. They simply may not have the energy or may feel sick.

Coping with your own emotions first: Many people think about how they would feel with a new diagnosis of cancer. It is vital that you take the necessary time to cope with your own emotions about this new diagnosis, before you can be helpful to a friend. In addition, try not to focus on your own feelings of loss and sadness, since your friend should not feel like they need to care for you.

Your friend or loved one’s emotional perspective: Most individuals are overwhelmed with mixed emotions about the idea of having cancer. The idea of what the immediate future will look like is powerful. When a person needs to make formidable decisions about financial responsibilities, the legal ramifications of property and belongings, conversations with partners, spouses, children, and other significant relatives, it is staggering. Changes in physical appearance with possible symptoms of hair loss, fatigue, along with decisions regarding treatment options only make this time in a person’s life more stressful.

Learn some basic information about the diagnosis: It is hard to know ahead of time how much information your friend will be comfortable sharing with you. It is incumbent on you to have at least a basic idea of what they are dealing with to enable you to understand not only what your friend may share with you, but how you can be most helpful.

Be careful, since there is an enormous amount of information available on the web. Unfortunately, not all of it is accurate. Beware of claimed miracle cures.

A few reputable web sites for specific cancer info, pain control and additional information:

1. www.beatcancer.org
2. www.thetruthaboutcancer.com
3. www.cancerfreeexperts.com

2) Tips on Individual Ways to Support a Friend or Loved One with Cancer

Do not wait for someone to ask you for help or offer to do “anything they need” without first providing an example. Being a good friend doesn’t mean you need to assist with all or many of these suggestions. After speaking with your friend, try to find out which gesture may be the most helpful. Offer some practical ideas by asking if you can do any of the following:

• Pick up prescriptions or shop for groceries.
• Offer to bring a cooked meal or a variety of fruit or vegetables over to their home. Always check for any dietary restrictions, since these have become commonplace.
• If you can, offer assistance with errands. If they have a child, you could offer to drive them to a school sport, an extracurricular class, pick up from school or offer pet care.
• Most individuals enjoy activities they can look forward to. Invite your friend to go out to lunch or dinner. You could also ask whether they would like anyone else invited to join.
• Make a resource list, based on their needs. It could be organizations with support groups, grocery stores that make home deliveries or home care agencies if that type of help is needed.
• Plan activities your friend enjoys. It may be going to a movie theater or renting a DVD to watch with them at their house.
• Offering to go for a walk together outside can be wonderful both physically and emotionally.
• If your friend or loved one can travel in a car, plan a day trip to one of their favorite destinations. If the person is homebound, plan an indoor picnic, a tea or anything that makes your friend comfortable and supported. 
• Be enthusiastic about spending time together.
• Offer a ride to a physician appointment or a treatment visit (i.e., radiation, chemotherapy).
• Be understanding if your friend changes their mind on the day you made plans. It is about how they feel and impossible to predict until that day arrives.
• Allow for both humor, as well as sadness. Many folks want to hear stories that will make them laugh. There may be times when sadness and grief are shared with a particular friend. Just being present is supportive during these times.
• Be supportive of treatment decisions, even if you might handle the same situation differently. 
• If your friend starts to continually lose confidence in their ability to handle all the work facing them with a cancer diagnosis, you could remind them of a time in their past when they faced a traumatic or stressful event and how well they were able to handle that problem. That will not work for everyone, but I have seen where it is very useful in cases when there are these types of past personal experiences. 
• Not everyone wants multiple visitors. Ask permission to call, e-mail or text each week to check to see how you friend is doing and follow through.

Offer to organize your friend’s medical care information in an outlined format. You could divide the information into sections. One example would be to take a large three ring binder divided into sections and write in the information listed below into each divided section:

• Initial Diagnosis and Work-up Pathology report Second or Third Opinions
• Information on treatments for their particular type of cancer
• X-rays and Scan results (to include Pet scans, CT scans, MRIs…)
• Immunology Treatments
• Medical Oncologist, Radiation Oncologist; Radiation
• Chemotherapy drugs 
• Nutrition during cancer treatment 
• Progress Notes (a written copy of one’s medical visits)
• Symptom Sheet 

This organized approach will help your friend feel that they do not need to remember everything that has occurred and will be extremely helpful during future medical visits. In my professional experience, this type of notebook has been invaluable.

3) Thoughtful Gestures or Gifts

• Beautiful flowers like an orchid, since the blooms last well over a month or an easy to care for plant
• Their favorite type of book/s (novel, mystery, poetry, audio book, non-fiction)
• Thoughtfully wrapped candy or cookies.
• DVDs of TV shows, movies or a documentary
• Pictures of friends and family in a nice frame
• An attractive pair of pajamas
• A gift card to purchase a device such as an Amazon Echo or Google Home/Mini. This could be very helpful if someone lives alone or is very weak.
• Accessories such as earrings, scarves, or very nice personal care items
• Crossword or Sudoku puzzles
• Nicely designed note cards
• Gift certificates for a spa service, restaurants, or passes for museums or an art gallery
• Portable hobby supply kits like scrapbooking or an activity they enjoy.
• Offer to drive your friend to one of their favorite places and if energy permits go for a walk outside or just drive by some beautiful scenery.

Remember the types of activities and interests your friend has shown and think of something that would bring a smile to their face! You could get a few friends to purchase some of the more expensive items.

4) Suggestions for Communication with Your Friend or Loved One

• Do not be afraid to talk with your friend, even if you do not have any specific advice to share.
• When speaking with your friend you can express how much you care about them.
• You could offer to make phone calls your friend might find difficult to initiate on their own. For example, assisting a friend by calling a medical center to find out what drug studies are offered for their specific type of cancer, along with the details of the protocol for getting accepted can be an enormous benefit. If your friend wants to be part of the process, having the phone “on speaker” can make them feel like part of the process and may provide confidence building by giving them the opportunity to ask questions and to see how the process works.
• Stay positive and be cautious that you chose positive words that will elicit a feeling of hopefulness.
• Don’t overwhelm your friend with multiple questions. 
• Ask the person with cancer if they would like to talk about their experience. It is best to allow him or her to decide if and when to talk and how much to share.
• Make time for a check-in phone call. Let your friend know when you will be calling. Also, let your friend know that it is okay not to answer the phone.
• Before visiting, giving advice, and asking questions, you need to ask permission if it is welcome. Be sure to make it clear that saying no is perfectly okay.
• Be an active listener and comfortable with silences. You presence may be more important than any words.
• Remember, you can communicate with someone in many different ways. If you do not see your friend regularly, ask if their preference is a phone call, text or e-mail. Don’t be offended if they need a break from any type of communication for a period of time.
• Discuss other topics besides their cancer. Your discussions could include your friend’s interests and pastimes before their diagnosis or topics that raise their enthusiasm.
• If your friend has requested or given you permission to communicate with specific individuals about their medical updates and physical changes, you may want to offer to gather and organize all of their phone numbers and e-mails so these important individuals in your friend’s life can communicate and keep each other updated.
• Be respectable of your friend’s treatment choices.

5) Support through Online Communities

Joining an online community is one way for individuals with cancer to connect with others. You could share this information with a friend to see if it would be a good fit.

This type of online support has several options to choose from in getting the help one might need. There are several advantages to joining this type of group:

1. An individual can decide for themselves how much information they are interested in sharing with others.
2. One can connect with other people experiencing similar diagnoses and symptoms.
3. This method of communication makes it easier and less time consuming to stay in touch with family, friends and possible new buddies one can meet through these communities.
4. Sharing experiences and challenges without having to meet someone face to face.
5. By listening and reading information online, one may learn about new treatment options and ways to treat side effects that he or she may not have been previously told.
6. Many individuals are at a loss as to how to communicate and how to be helpful with a friend or loved one who has cancer.

There are numerous options for online support communities. I have listed a few below.

• Caring Village: (https://www.caringvillage.com) Caring Village is an easy to use dashboard that makes communications with family, friends and care professionals easier and faster. One can choose to utilize a centralized calendar, a wellness journal, a medication list and a customized care plan, just to name a few of the many choices. This can ease the task of repeating information and experiences to friends and family multiple times.
• Group Loop: (www.grouploop.org) Group Loop provides online support specifically for teenagers with cancer and their families.
• The National Cancer Support Community: (www.cancersupportcommunity.org) The National Cancer Support Community has 45 affiliates throughout the United States and Canada. A person can call them to get information on numerous types of research and support for different types of cancer.
• Support In Your Community: Check for a Healing Strong support group in your community at www.healingstrong.org. Their Mission Statement: Our mission is to connect, support, and educate individuals facing cancer and other diseases with holistic, evidence-based, non-toxic therapies through empowering community groups.

6) Supportive Comments You Can Say that Show Kindness and Support

• “If you ever feel like talking, I’m here to listen.”
• “How can I help?”
• “I care about you.”
• “I’m thinking about you.”
• Using words like “I am here for you” or “you are not alone”.
• “I'm sorry this has happened to you.”

Due to stages of grief, fatigue and multiple other factors known and unknown, not everyone will react the same way to each comment. It is important to not take it personally, if your friend has an untoward reaction to what you think is a supportive statement.

Many comments made to individuals with cancer are not appropriate, supportive or helpful. Below are a few examples:

7) What Not to Say:

• “How much time do you have?”
• “I understand how you feel.”
• “You will be fine.”

Do not speak to common neighbors about your friend’s health status.

8) Conversations with your spouse or partner

Suggestions for a spouse or partner who has cancer

• First, let your partner know exactly how you are feeling both physically and emotionally. Since cancer can have a severe impact on your emotional health, be specific regarding your fears, anxieties, as well as any feelings of depression and/or sense of being overwhelmed with what lies ahead. Let your partner know any physical pain or discomfort you are experiencing.
• Provide your partner with specific examples of what you need to feel supported and cared for at this time. Also let them know that this may change as time goes on and how important it is to check in with each other every week or whatever time frame works the best.

Suggestions for the person supporting their spouse or partner with cancer

• Plan ahead. Schedule a quiet place and convenient times when neither of you are not rushed. That may require hiring or asking someone to babysit or care for pets.
• Be an active listener focusing entirely on what is said to you rather than your immediate response or next question.
• Never raise your voice or give criticism.
• Since there will be multiple topics to discuss and explore, focus on just one topic at a time. It could be beneficial for you to take notes if your partner agrees ahead of time. That could help slow you down and provide some extra time for both of you to gather your thoughts. An outline is helpful for many people. It could be organized with the activities that need to get done. One example may look like the following: A few sections divided into initial diagnosis and tests completed, second or third opinions, further testing and treatment options.
• Slow yourself down, allowing your partner to speak without interrupting.
• Be open to discussing how each of you are feeling, understanding that you may each be at a different stage of the grieving process and/or handling the stress associated with this new diagnosis very differently. 
• Think of ways, you could be supportive to your partner. For example, accompanying them to a physician appointment/s and taking notes, reviewing treatment options together.
• Rehearsing in your head or out loud what you might say can be of value. Writing some notes on paper ahead of time, could also be very helpful.
• Hiring a Private Health Advocate to be present with both of you or your partner could be valuable as well.

9) Cannabis for Symptomatic Relief

If appropriate, you may also want to suggest that your friend try using cannabis for pain or nausea. Older baby boomers may have used marijuana in the past and believe it is illegal or immoral. You may want to encourage or help your friend research information.

A few good web sites are:

• The American Cancer Society’s web site, https://www.cancer.org/treatment/treatments-and-side-effects/complementary-and-alternative-medicine/marijuana-and-cancer.html includes information on marijuana and cancer. The web site discusses how different compounds may affect pain, anxiety, nausea and inflammation in the body.
• One can also get information from NIH-The National Cancer Institute at https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq, as well as the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855

10) Post Treatment Support

Your support and bond with your friend or loved one will be needed at the post treatment period. This period of time will be different for each person and may be ongoing.

Since treatments and medications may decrease one’s ability to continue their daily routine, it is important for you to encourage your friend to stay involved in their usual activities before the diagnosis or symptoms occurred. Your presence and rapport will be your special gift to your friend or loved one.

Linda Winkler Garvin
Health Advocacy & Consulting

6/29/19: This article was published at BeatCancer.org

#cancer #tips

How to Prevent Medication Errors with your Aging Parents or Relatives

Every year there are countless deaths and hospitalizations resulting from the mismanagement of medication usage. These deaths occur from multiple factors including administration of the incorrect medication, taking drugs improperly and the wrong dose to name a few. We can help reduce these medications accidents and deaths, by implementing some safety precautions.

Follow these steps to help your elders...

1. List all the medications prescription medications, over-the-counter drugs and any vitamin and herbal supplements they take.
2. Educate the elderly person about their medications including the desired effects and be familiar with the instructions on how and when to take the medication, possible side effects and drug interactions.
3. Develop a medication usage sheet. Below is one example of how you can list all the medications. A medication list should include the following:
   • Name of the medication, color and shape.
   • Dosage and frequency
   • Reason they are taking the medication
   • The date they started taking the medication
   • The prescribing physician's name and contact information
   • Any special instructions and/or side effects about the medication
4. It is important to have all the medications filled at only one pharmacy. It can be very helpful to develop a relationship with one of the pharmacist' s where the elder picks up their medications. Pharmacists are well trained and can answer your questions about possible drug interactions, side effects and contraindications that your health care provider may not tell you.
5. Keep a list of all the medications the elderly are taking on the refrigerator or by the main telephone they use in a brightly colored folder clearly marked.
6. Ensure that the medications are stored properly [away from the heat or in the refrigerator] and discard any drugs that have expired or have no labels.
7. Instruct the elderly to put on a light when taking medications and never take their drugs in the dark.
8. If the elderly person utilizes a pill box, always have them keep at least one pill in the original medication container for identification purposes.
9. Never have the elderly mix more than one medication in a pill container, especially when traveling.
10. Always have the elderly bring a list of all of the medications they are currently taking when going to a physician appointment.

#pill #tips