One of HOPE's values is to focus on the people fighting cancer and the circle of individuals who surround them in support - their "peeps" as one of HOPE's original founders called them. "Words of HOPE" is a blog to reach the peeps - anyone whose life has been touched by the word cancer. Posts will appear monthly and will include voices who want to reach out to you in support on your journey - doctors, nurses, survivors, caregivers, family members, dietitians, fitness experts and more.


Ideas to Help Patients at Cancer Treatment Centers

Thursday, November 16, 2017

Giving back can take many forms. Here are ideas direct from the local cancer centers on how you can make a difference in someone's day:

  • From Fox Valley Hematology and Oncology - one popular item that individuals make to donate are the fleece, no-sew blankets. Their Education Center in Appleton can be reserved for making blankets or quilts. Younger crafters can make bracelets and key chains out of parachute cord, tissue paper flowers, encouragement cards, etc. Groups can assemble goodie bags filled with candy, chips, tissues, word search/puzzle books, lip balm, pens, cookies, fun hats, etc. One volunteer periodically brings in carnations. Handmade cards from children's Sunday School classes are always a hit. FVHO scheduled volunteers provide the TLC patients appreciate during their treatment. They also help with meals, coffee, warm blankets, pillows, escorting, and sometimes just socializing with the patients. Contact the volunteer coordinator to help at the center at http://www.fvho.org/cancer-resources/volunteer .
  • Those traveling the cancer journey are often prone to being cold or feeling chilled. Handmade blankets, quilts and fleece are always a hit and in demand at all of the area cancer centers (Ascension, Aurora, FVHO, and ThedaCare).
  • Cookies for the cancer patients being treated inpatient and outpatient
  • Handmade cards of encouragement
  • A Daily Thoughts bag - picture two taffeta bags of different colors. One has a supply of motivational thoughts on tiny cards that are sealed in envelops. Thoughts would be just little motivators, thought provokers, encouraging words, etc. Each day the patient goes to chemo or radiation, they take a note from bag one, read it, contemplate it during treatment, and then place note in bag two. It's a way to focus on positive thoughts during treatment and count down the days - bag two gets full as the treatment ends. A large card starts the process and includes the instructions. A large "ending" card proclaims, "Hooray you're done…Come to A Time To Heal" with the following link provided for more information on our free cancer survivorship program: /local-support/survivor . Patients would receive the bag with the correct number of motivational thoughts to coincide with their treatment and the cards could be selected randomly - and may even prompt conversations in the treatment waiting room.
  • From The American Cancer Society - volunteer opportunities abound! Consider coordinating a hat/scarf drive at one of their local walks like SoleBurner, Relay for Life, or Making Strides. Contact the local ACS manager for more information - Kim Kinner, Senior Manager, Hospital Systems, 920-321-1363.
  • From ThedaCare Regional Cancer Center - seat cushions are a new idea and were a big hit with patients who needed a bit more comfort in their lives. The cushions are a 2'x2' piece of foam covered in a soft fabric, such as fleece, with the ends tied together much like a tie blanket.

Do you have ideas to share? Send your suggestions to brenda@hopecancerconnection.org

 

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What's Your Combine? Finding a sense of calm through A Time To Heal

Wednesday, June 21, 2017

I recently helped to facilitate our free cancer survivorship program, A Time to Heal. As any teacher knows learning goes two ways - from teacher to student…and from student to teacher. Spending 12 weeks with a group of cancer survivors who are learning to thrive after their diagnosis changes you. Sitting and listening to the presenters each week, my little green notebook began to fill up with suggestions for my own life: how to listen to my body, how to control my mind when fears take over, how to take charge of what I'm putting into my body and what I'm doing (or not doing) to keep physically fit and healthy.

At each session I watched the participants, both cancer survivors and their caregivers, begin to move forward and make a plan. Making a plan requires looking ahead in your life, a big step for a cancer survivor especially if they are not that far out of treatment. Treatment is about killing cancer cells today, how you are feeling today, and what you need to do to feel better - today. The A Time To Heal curriculum helps a survivor to move beyond "today" and look forward to a new "tomorrow". The survivor and their caregiver create a plan for how they see "their best life". They come to terms with what has happened to them and learn many tips and tricks to help them in their new lives.

One of my favorite parts of the class is sitting around the table and guiding the participants as they share their journeys: the highlights of their past week, the troubles that may have arisen, the change they've noticed in a particular relationship, the fear of the next scan. Slowly, week by week, this collection of cancer survivors and caregivers becomes a support group, not just a learning environment. Each one inspires another. They have all been changed by cancer, and sometimes even for the better.

On a dreary November day, I watched a fall session graduate. To quote one participant, "I feel like a whole other person - I can handle it now!" Caring warmth radiated from the entire group as each participant shared one important step from their action plan -changes they will make one step at a time.  They had found their sense of calm.

So why did I ask you what is your combine? On that same dreary November day, I also attended a six-month reunion party. A nearly full class reconvened to share stories and laughter and support each other once again. One participant brought starter plants for everyone as she had renewed her love of growing things. She also started painting again and brought her resurrected garden art piece for all to see. One participant shared the news that her cancer had metastasized but she had peace about it. After work, when her thoughts were getting the best of her, she'd call her boyfriend. He was out working in his combine and he'd let her know where he was. She would find him, climb in, they would talk, and eventually she would be lulled to sleep by the combine's engine as it moved along row after row. Peace in the combine.

We all need a "combine" in our lives. Some of us look in the wrong places for peace and contentment in our trials. I'm privileged to facilitate a class that helps survivors find their "combine" and move forward in their lives. We've just completed a spring session and held the fall reunion party, and at times the sessions were difficult to fit into my "schedule". But I'm working on shifting my priorities, making ATTH a priority, and remembering the lessons I learn from the participants. And I've determined helping families on the cancer journey is my combine…what's yours?

Registration is now open for the fall session of this free cancer survivorship program, A Time To Heal - visit /local-events for more information or call Nurse Direct at 1-800-362-9900. The session runs from August 29-November 14 and will be located at the Menasha Corporation Community Room in Neenah. The program is open to individuals from all health systems.

Brenda Bonn
Executive Director of HOPE Cancer Connection and Facilitator for A Time To Heal

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What to Say, or Not Say, to Someone Who Has Cancer

Thursday, April 20, 2017

Talking to someone you care about who has cancer can feel awkward. Here are some tips to help you:

Some things you might say:

  • I'm sorry this has happened to you. I care about you very much.
  • May I give you a hug?
  • Do you want to talk about it?
  • My prayers and thoughts will be with you and your family
  • I'm not sure I'm saying this the right way, but I want you to know…
  • What are you feeling?
  • I will be with you and support you during this difficult time
  • What do you think the Packers chances are for next year? (talk about things they are interested in)
  • I've been wondering how you've been feeling?
  • I'm free on Tuesday afternoon. Can I help you by…?
    • Driving to appointments, cooking a meal, shoveling snow, taking care of the garden, giving rides to the kids, etc.
    • Offer something specific. They are probably overwhelmed with decisions about health care, fears, concern for themselves and their family not day-to-day matters.
    • If you really want to help, sit down, take a couple minutes, and think about what might help them most.
    • Can I come over to visit? - Suggest a time but be flexible and sensitive to side effects due to their treatment such as nausea or fatigue. Follow through and plan the next visit too!

Remember:

Compassion, not pity                                      Heard, not told

Comfort, not advice                                        Dependability, not promises

Hope, not fear                                                 Involved, not avoided

Love, Love, Love

Be cautious with the following:

  • How are you? How are you feeling? - Broad questions might be too much for someone overwhelmed with worries. Try something more specific.
  • It will get better. I'm sure you will be fine. I don't think you need to worry! - You might be denying their very real fears and worries with these questions causing them to withdraw or shut down communication. Your intention is good, but it may suggest that you don't want to talk about the cancer anymore.
  • I know how you feel - Really?? Do you? It would be better to ask them what they are feeling and then listen carefully
  • At least your cancer is only… - This is another way of denying their fears and worries. They don't want any cancer.
  • Why do you think you got this cancer? - This could reinforce the guilt they might already have about getting cancer. Better to talk about the hope of the future than possible guilt from the past.
  • I had a good friend who died from that cancer.  - This probably gets said out of your own fear and suggests that you already know everything they will be going through. It can heighten the fears and worries the cancer survivor already has. Your friend would prefer to hear a story of hope and survival.

Compiled by Chris Mings, Calumet County Relay For Life Volunteer. Includes ideas and suggestions from The American Cancer Society and Lori Hope, author of Help Me Live: 20 Things People With Cancer Want You to Know at lorihope.com.

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How Cancer Treatments Can Affect Your Oral Health

Tuesday, February 21, 2017

A healthy mouth is vital to achieving overall health. It can be of particular importance during cancer treatments. It is not only a concern for comfort but can also prevent delays in treatments and risks of infection that could potentially spread to other areas of your body.

Many types of chemotherapy or radiation therapy to the head & neck region, as well as some targeted therapies can cause significant changes in the mouth, the two most common being Dry Mouth and mouth sores called Oral Mucositis.

A dry mouth is far more than an annoyance. Saliva is needed for proper digestion, swallowing and speaking. It helps to reduce taste changes often associated with cancer treatments. Saliva acts as a lubricant to prevent injury to the oral tissues and protects the teeth from cavities and enamel erosion. Saliva's protective agents can also defend against infections like Thrush, which is very important when the immune system is compromised from low blood counts.

For those receiving chemotherapy, issues with Dry Mouth will typically return to normal when treatments are complete. Radiation to the head and neck can result in permanent damage to salivary glands causing lifelong oral complications associated with lack of saliva. The extent of the damage to salivary glands or other oral structures depends greatly on the dosage and direction of the beam of radiation.

Oral Mucositis affects, to some degree, approximately 40% of those receiving standard dose chemotherapy and nearly all who receive radiation to the head and neck. Mucositis can range from mild soreness of the oral tissues to severe, painful ulcerations that result in complications with eating, delays in treatments and risks of infection. Oral Mucositis may be accentuated by using oral care products with harsh, irritating ingredients and by trauma from improper oral hygiene techniques, existing dental issues and food choices.

Dry Mouth, Oral Mucositis, and other oral complications associated with cancer treatments can be minimized, and in some cases prevented, by being proactive with your dental care, product selection and modified oral hygiene techniques.

Simple ways to protect your mouth include:

  • Good oral hygiene and plaque removal are essential.
  • Use an extra soft toothbrush with a small, compact head to avoid tissue trauma.
  • Use toothpaste free of irritating ingredients including detergents, peroxide, tartar control and whitening agents.
  • Choose a mouth rinse that does not contain alcohol, phenol or peroxide.
  • Stimulate saliva with sugarless gum and mints sweetened 100% with xylitol.
  • Use over-the-counter oral moisturizers
  • Avoid dry, salty, sharp and sticky foods. Choose foods moistened with sauces and gravies.
  • Avoid beverages that contain alcohol, caffeine and high acid levels like soft drinks. Stay well hydrated by drinking lots of water.
  • Talk with your Physician or Dentist for prescription products to relieve Dry Mouth and protect oral tissues.

Find more information on oral health and cancer treatments at www.sideeffectsupport.com

Download our free informational brochure, "Cancer Treatments and Oral Health" at  http://www.sideeffectsupport.com/images/downloads/SE-Brochure.pdf

Jill Meyer Lippert, Registered Dental Hygienist
Founder of Side Effect Support LLC

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Breaking the Myth of Palliative Care

Monday, March 7, 2016

Palliative care is not new but it is getting a lot more attention in the world of cancer care.  We believe this new focus is because the ultimate goal of palliative care, improving quality of life, is important to you and the doctors and nurses on your health care team.  Note:  the focus of palliative care's work is on life and living and not on death and dying.  

What exactly is palliative care?  Palliative care is an approach to care for patients who are living with a serious or life threatening illness.  When you are being treated for a serious illness, like cancer, your health care team will include oncologists, nurses, and others, by adding palliative care specialists you will have the best care possible - care focused on treating the medical problem and care focused on your quality of life.  Together you and the care team will work to manage your symptoms, control your pain and provide additional support to meet spiritual, emotional, and social needs, ultimately creating a plan for how you want to manage your disease.  

One of the more common myths around palliative care is that it is the same as hospice.  Hospice is a type of palliative care that is important for patients when the focus of their care is moving from changing the course of the disease to comfort measures.  Palliative care is a holistic approach to care for patients with serious (perhaps even life-threatening) illness that considers how the illness is impacting the body, mind and spirit of each patient.  Research looking at the impact of palliative care supports the belief that early involvement of the palliative care team is beneficial to patients and their families.  In short, palliative care helps you (and your family) focus on what matters most as you manage the stress and strain of living with a serious illness.  Our message is that palliative care is of benefit at ANY stage of serious illness!

By taking charge of your cancer journey, you can ultimately take charge of how you want things to be throughout the course of your illness and when needed to your death.  Together with your doctor a plan for your care can be developed that fits with your personal goals of care and the medical situation.  Please share your plans with your family and others who are close to you.  Know that there are many resources available to help you have this conversation.  For your convenience we are including a couple of well-respected web sites that provide information on palliative care for your consideration.  (https://getpalliativecare.org/ AND http://www.cancer.org/treatment/treatmentsandsideeffects/palliativecare/index)

You have lots of living to do and palliative care can help you make the most out of life with cancer!   

Olumuyiwa O. Adeboye, MD, FACP, MBA and Ann K. Patek, RN, MSN                                                                Ministry Health Care

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Support Groups - What do they offer?

Thursday, February 5, 2015

Being diagnosed with cancer is perhaps the most frightening time in a person's life. The three words "you have cancer" can induce heightened feelings of anxiety and fear. Finding support to help one cope not only with the physical component, but the mental, social and emotional components is also very important.

For purposes of this blog, I will focus on the benefits of support groups and how they can play an integral role in helping one cope with a diagnosis of cancer. There are many different ways individuals and families can find support. Support groups offer certain things that other supportive resources may not, such as a sense of camaraderie and understanding. People often find comfort and support by talking with and listening to others who are also dealing with something very similar. I co-facilitate a support group for individuals with blood cancers and their support person, through the Leukemia and Lymphoma Society and have seen the benefits a support group can offer. Individuals and their support person find this venue to be a "safe" place to vent their feelings and offer/gather support. That sense of camaraderie is very evident and it is great to see the hope and support that is offered. Sometimes, it's nice to have one's feelings validated or get suggestions or comfort from others who are on a very similar journey with cancer. The hope of this is that people can find better ways to cope with the day to day stressors cancer can induce. It is important to mention that groups can be just for the patient or include a support person. Also keep in mind that the patient is in control of their level of participation and can attend on a short term or long-term basis.

When considering a support group, it is important that there are trained facilitators to help lead the group and keep things on track. Support groups may not be for everyone and if you are unsure, please talk to the oncology social worker or other supportive staff at the cancer center for help in finding an appropriate group or other type of supportive resource. Sometimes a person may benefit more from individual counseling and their cancer care team can help with this. Support groups can come in different forms, such as face-to-face, online, or over the phone. I would again direct you to speak with an oncology social worker or other supportive staff at your cancer center for guidance and a listing of safe and credible supports. It can be very daunting to navigate things online and it is important that you are getting safe and credible information and support.

Carrie Olm MSW, Oncology Social Worker at St. Elizabeth Hospital

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Buying Life Insurance After Being Diagnosed With Cancer

Friday, May 30, 2014

If you are currently dealing with cancer or have dealt with cancer in the past, one of the questions that you may be wondering is, can I get life insurance?

This is an extremely common question, yet it is one that is very difficult to answer. This is because there are so many different types and severities of diagnoses. Finding a life insurance quote after a cancer diagnosis can be difficult but not impossible. Your chances of receiving life insurance will largely depend on if you are currently undergoing treatment or how long ago your treatment was completed. Your chances also depend greatly on the history, type, stage, treatment and grade of the cancer.

Life insurance companies will ultimately look at the curability, severity and treatment of your cancer. Certain types of cancer are considered to be very low risk and a history of these may not affect premiums or insurance at all. History of other types of higher risk cancers may receive a substandard rating (meaning you might pay more) or possibly even a decline.

One option for those currently undergoing treatment or with a history of severe cancer is a guaranteed issue life insurance policy. Guaranteed life insurance is a type of life insurance in which the applicant will not undergo any medical underwriting. Because of this lack of underwriting, this means that anyone, even those currently undergoing treatment, will be able to get life insurance. These policies do not come without any drawbacks. Since the insurance company is not asking any medical questions, they are taking on a substantially higher risk and therefore they often issue these at higher premiums and for lower face amounts. That being said, they are often an excellent option for those with no other means of obtaining life insurance.

Another strategy for obtaining life insurance for those who normally cannot is to get it through your employer. Some employers do offer life insurance to their employees. These plans can be offered to employees in terms of flat amounts (such as $50,000 or $100,000) or they can be offered as a multiple of your current salary (such as 1x or 2x current salary). Often employee life insurance will not have underwriting questions and will issue it to every employee that chooses to sign up. This makes it an excellent option to consider when shopping for life insurance. One of the drawbacks of this type of insurance is that the coverage often stops when the employee stops working for the employer. This can make it difficult for those who stop working because of illness. Although this is not always the case, it is something that everyone should consider when signing up for life insurance through an employer.

Life insurance is a very important aspect of one's overall financial plan. A properly designed life insurance policy can help with issues such as end of life expenses, supplemental income to family members, estate planning, debt repayment, charitable giving, college planning and many more.

Mike Dreyer, Dreyer and Associates, Appleton

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Find Your Path to Optimal Health - Healing Oriented Medicine For All Stages of Cancer Care

Monday, February 24, 2014

Integrative medicine is a healing oriented medicine that takes into account all aspects of a person, and draws from both conventional medicine and complementary approaches to find the most effective, least invasive path to healing for each person. As far as cancer, integrative medicine can help at all stages--by optimizing overall health to prevent cancers from arising, by relieving side effects of the cancer or treatments, and by helping to prevent recurrences of cancer. A patient's treatment plan will probably include conventional cancer care like chemotherapy, surgery or radiation, but also addresses evidence-based complementary therapies like nutrition, supplements, acupuncture, massage and mind-body therapies like yoga or meditation.

As far as prevention, there are many factors that contribute to the development of cancer. Some are within our control and others, like our genes, are not. However, research is showing that gene expression is greatly influenced by multiple factors, including the foods we eat, toxins we are exposed to, and stress hormones. So even if a person has a strong family history of cancer, there are many things that person can do to influence gene expression and the chances of getting cancer. The American Cancer Society estimates that 1/3 of cancers could be prevented through healthy nutrition and healthy weight. Another 1/3 could be prevented by not smoking. Integrative medicine focuses on helping people make healthy changes in nutrition and physical activity, as well as addressing mental, emotional, social and spiritual aspects that influence health.

During treatment for cancer, integrative medicine offers ways of helping with side effects of the treatment or cancer.

  • Acupuncture can be very helpful for pain, neuropathy, nausea from chemotherapy, dry mouth from radiation, stress and anxiety, insomnia, and fatigue. Typical treatment involves needles placed just under the skin on the arms and legs, including a point on the inner arm that is especially useful for nausea. The needles are left in place for 20-30 minutes. Most patients experience deep relaxation during the treatment and have a sense of well being after acupuncture.
  • Yoga has been shown in clinical studies with cancer patients to lower stress hormones and improve sleep, fatigue, quality of life, and physical functioning.
  • Research on meditation in cancer patients shows that it can help with stress, quality of life, fatigue, anxiety, and depression. Mindfulness meditation, which cultivates non-judgmental awareness of the present moment, is the type of meditation that has been most studied. Classes in meditation and yoga are available in Appleton and Oshkosh through Affinity Health System, The Y and yoga studios throughout the valley.
  • Herbal medicines and supplements can interact with conventional treatments so should be used only with your physician's guidance.
  • Aromatherapy can help with nausea and stress.

After cancer treatments are finished, people are often interested in what they can do to help prevent a recurrence. This can be a good time to re-evaluate life goals, lifestyle habits and make healthy changes, which can have a big impact on risk of recurrence as well as quality of life. As far as physical activity, the World Health Organization estimates that exercise in breast cancer survivors can reduce a woman's risk of recurrence by 26-40%. Healthy nutrition is also essential. In addition, it is important to address stress, emotional health, relationships, and make changes in order to live in accordance with one's life goals, passions, and purpose.

Dr. Jennifer Norden, HOPE Medical Advisory Council

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Cracks and Shifts

Wednesday, November 6, 2013

What inspires us to be a part of a cancer survivor group? After an individual has been diagnosed with cancer it is an immediate, life-changing event. I have been part of this process for years and the crack, or shift that happens to a patient after this diagnosis is almost palpable. As a physician, having limited time with the patient, I have wondered about how this impacts the patient and the people around them.

Small little tidbits of listening and watching patients outside of my formal interactions have helped me gather some insight into this. Watching a two-week prostate cancer survivor, waiting patiently, to go out to breakfast with a new buddy who is finishing his last week of radiation for his prostate cancer. - they are still meeting for breakfast two years later. Watching three women talk about their families in the waiting room while we work on the radiation therapy machine. One woman, on the day of her last treatment, shared a cake and brought in her two young boys to meet the other patients and introduce them to her friends and staff.

Watching how some individuals are able to share this crack or shift into a healthier place has been inspiring. I am now convinced that the time patients share their lives during this "accidental" period (waiting for their radiation treatments) means more to their psychological healing that anything a physician can offer. What if we actually had a time, place, organization, web site, or intention to make this happen after a patient had cancer therapy?

I believe HOPE Cancer Connection of the Fox Valley is the organization to connect the individuals I have been watching. HOPE's newly launched website is a place to find the support, resources and connections that are available to a family going through cancer.  I have been a part of HOPE since the beginning and it is my pleasure to introduce you to the connections you need wherever you are in your cancer journey.

As a member of the Medical Advisory Board, I can assure you that we will help you find the safe links to the information and support you need. We'll pass on the articles and information that health providers alone have access to. We will approve every piece of information on the website. And we will listen to the feedback you give us - additional needs that you see in the Fox Valley that we can help with, questions you have in your journey, and specific types of information we should be including on the website, things we don't have time to talk about at your office visit.

Now we know what a group of people, who have experienced this shift or crack in their life after cancer treatment, can do to make a cancer survivor's life just a little bit better in the Fox Cities.

Dr. Robert Kohl, Radiation Oncologist, HOPE Medical Advisory Board

 

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Moments of Hope

Tuesday, July 23, 2013

There are certain moments in our life that never leave us - saying, "I do"; hearing the doctor say, "It's a boy"; catching an emergency bulletin announcing the attack on Pearl Harbor, or the explosion of the space shuttle, or the fall of the Twin Towers. Your mind can always go back to where you were, whom you were with, and what you were doing at that specific moment in time.

Hearing the words, "you have cancer" knocks your world on end. I remember my parents traveling 200 miles to tell us in person that my mother had breast cancer. And I vividly remember watching my mother's knees become weak when the surgeon told us my father's cancer was lymphoma, not a simple gastric tumor. The word "cancer" affects the one who receives the diagnosis and an entire circle of individuals around them. The spouse/partner suddenly becomes a caregiver; family members take the call to action to heart and step in and often on top of each other; children become scared and worried; co-workers and friends wonder if they have what it takes to "be there" on a daily basis. And let's face it; it's a word that gives the majority of us the chills.

HOPE Cancer Connection was built by caring individuals with a deep desire to be there for those on the cancer journey - for the survivor as well as those around them. HOPE's website is the one place that gives you the tools you need to navigate your way through cancer in the Fox Valley. From cancer team descriptions, advice on how to get a second opinion, local support groups that provide the "we've been there too" angle to where to find a wig, skin care after chemo, and programs on how to rebuild your life after cancer. HOPE offers local support in an easily navigated website that has been approved by our Medical Advisory Council. It's a safe place to get the answers to the questions cancer brings to your life.

It's my absolute pleasure to introduce you to HOPE Cancer Connection's featured survivors from the valley. I hope you will take a moment to read their stories and find a connection to your own journey. Our goal is to provide the infrastructure in which existing and emerging cancer resources can be easily accessed. We hope to continuously be adding new resources to the website as we find out about more and more individuals who are hoping to making a difference in the world of the cancer survivor. We hope that you will team with us - be our eyes and ears in the valley - and let us know what resources, opportunities or events need to be added to the website.

We welcome you to HOPE Cancer Connection of the Fox Valley where we believe in supporting your journey with HOPE.

Brenda Bonn, Executive Director, HOPE Cancer Connection of the Fox Valley

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