What is SPOHNC?

Support for People with Oral, Head and Neck Cancers isn't the easiest support group name to remember, but if you spoke to the people who have been helped through the monthly meetings of this group, led locally by Jack & Temple Igleburger, you'd know that the value of the support provided by group is worth the trouble.

Jack is himself a survivor of oral cancer and started the local chapter of the organization in 1991 Here is some information taken from the organization's newsletter:

"[SPOHNC] is a non-profit organization dedicated to meeting the emotional, physical and humanistic needs of oral and head and neck patients and their caregivers. The group is patient-directed, offering peer advice and encouraging self-help for patients in need. SPOHNC chapters hold monthly meetings offering information, support and encouragement to newly diagnosed patients, survivors, family members and friends in a friendly, non-threatening forum. Survivors discuss situations, experiences, coping strategies and hopes. Educational programs are also presented as part of the group program."

The local SPOHNC support group meets every third Saturday of the month at 10:00 a.m. at the Cancer Support Home in Fayetteville. Attendees share successes and concerns, ask questions and get advice from others who have dealt with challenges similar to their own. Current news about cancer is also shared, and issues such as prescription medicine expiration and new studies in oral, head and neck cancer treatment are popular topics of discussion. It's an extremely supportive group, and the fact that it's still going after 21 years speaks to the dedication of Jack and Temple to their mission of helping others who are going through what they did. For more information, contact Jack or Temple at 479-876-1051 or 586-4807 or tmplnjak@cox.net.

April is National Oral, Head and Neck Cancer month, and this week - April 22-28 - is dedicated to sharing information about the multiple types of cancer that the month encompasses. To that end, we'll do our part and provide some information here:

Tobacco (including smokeless tobacco, sometimes called “chewing tobacco” or “snuff”) and alcohol use are the most important risk factors for head and neck cancers, particularly those of the oral cavity, oropharynx, hypopharynx, and larynx. Eighty-five percent of head and neck cancers are linked to tobacco use. People who use both tobacco and alcohol are at greater risk for developing these cancers than people who use either tobacco or alcohol alone.

Head and neck cancers account for approximately 3 to 5 percent of all cancers in the United States. These cancers are more common in men and in people over age 50. It is estimated that about 12,000 men and 9,000 women will develop these cancers each year. If you are a smoker, or know someone who is, it's important that you are aware of the following symptoms and visit your physician as soon as you see any of them develop.

Symptoms of several head and neck cancer sites include a lump or sore that does not heal, a sore throat that does not go away, difficulty swallowing, and a change or hoarseness in the voice. Other symptoms may include the following:

• Oral cavity. A white or red patch on the gums, tongue, or lining of the mouth; a swelling of the jaw that causes dentures to fit poorly or become uncomfortable; and unusual bleeding or pain in the mouth.
• Nasal cavity and sinuses. Sinuses that are blocked and do not clear, chronic sinus infections that do not respond to treatment with antibiotics, bleeding through the nose, frequent headaches, swelling or other trouble with the eyes, pain in the upper teeth, or problems with dentures.
• Salivary glands. Swelling under the chin or around the jawbone; numbness or paralysis of the muscles in the face; or pain that does not go away in the face, chin, or neck.
• Oropharynx and hypopharynx. Ear pain.
• Nasopharynx. Trouble breathing or speaking, frequent headaches, pain or ringing in the ears, or trouble hearing.
• Larynx. Pain when swallowing, or ear pain.
• Metastatic squamous neck cancer. Pain in the neck or throat that does not go away.

What about the Caregivers?

There is plenty of information out there about dealing with cancer as a patient. Magazines such as Cure and Coping with Cancer, and their accompanying websites, provide wonderful support to patients about the reality of life with cancer and follow them into recovery and survivorhood. There are support groups for different kinds of cancer diagnoses (see ours here), books to read, and products aimed at making a cancer patient more comfortable and better prepared to cope with their journey.

But what about the caregivers? Very often, cancer patients are dependent on spouses, siblings, children, or just close friends. Patients need help navigating the sometimes overwhelming array of new physicians and medications and the added scheduling burden of frequent visits to different doctors and medical clinics. Functions that used to be managed easily by the patient like doing laundry and mowing the lawn become highly scheduled and doled out to volunteers pulled from family members and friends. Behind all of this scheduling and dietary monitoring and pill-sorting and equipment renting is usually one specific person who takes on the bulk of the burden.

Caregiving can exhaust even the strongest individual very quickly. But the physical tasks that are required are not the only causes of fatigue. The emotional burden of maintaining a positive outlook around your loved ones or just having to be the "keeper of the information" can also be extremely tiring. If you are a caregiver don't forget to consider your own needs for down-time.

Take advantage of all those offers of help and be specific. Now is not the time to say "Oh, we're fine... thanks for your offer." If someone asks what they can do - give them a short list. Ask "What are you willing to do?" In some cases, leaving the house for anything other than a medical appointment can be daunting or even impossible depending on a patient's condition. Would they mind going to the grocery store with a shopping list for you? How about picking up your dry-cleaning and running a package by the post office? If they are offering to help - let them.

Something that often comes as a surprise to caregivers is the range of emotions that accompany the journey. It's not just the patient who has to deal with these feelings, but sometimes the caregiver has a harder time showing them. There is a mis-conception that a caregiver needs to remain strong and not let their emotions get the best of them. Here is some info from the National Cancer Institute that deals with this subject:

It's common to feel stressed and overwhelmed at this time. Like your loved one, you may feel angry, sad, or worried. Try to share your feelings with others who can help you. It can help to talk about how you feel. You could even talk to a counselor or social worker.

You probably have many feelings as you take care of your loved one. There is no right way for you to feel. Each person is different. The first step to understanding your feelings is to know that they're normal. Give yourself some time to think through them. Some feelings that may come and go are:

• Sadness. It's okay to feel sad. But if it lasts for more than 2 weeks, and it keeps you from doing what you need to do, you may be depressed.
• Anger. You may be angry at yourself or family members. You may be angry at the person you're caring for. Or you may be angry that your loved one has cancer. Sometimes anger comes from fear, panic, or stress. If you are angry, try to think of what makes you feel this way. Knowing the cause may help.
• Grief. You may be feeling a loss of what you value most. This may be your loved one's health. Or it may be the loss of the day-to-day life you had before the cancer was found. Let yourself grieve these losses.
• Guilt. Feeling guilty is common, too. You may think you aren't helping enough. Or you may feel guilty that you are healthy.
• Loneliness. You can feel lonely, even with lots of people around you. You may feel that no one understands your problems. You may also be spending less time with others.

Talk with someone if your feelings get in the way of daily life. Maybe you have a family member, friend, priest, pastor, or spiritual leader to talk to. Your doctor may also be able to help.
Here are some other things that may help you:

• Know that we all make mistakes whenever we have a lot on our minds. No one is perfect.
• Cry or express your feelings. You don't have to pretend to be cheerful. It's okay to show that you are sad or upset.
• Focus on things that are worth your time and energy. Let small things go for now. For example, don't fold clothes if you are tired.
• Remind yourself that you are doing the best you can.
• Spend time alone to think about your feelings.

At Hope Cancer Resources, our licensed social workers and counselors are able to schedule individual appointments with you and/or your loved one to help you cope with the varied physical and emotional challenges that accompany a cancer diagnosis. Don't hesitate to reach out to those around you. We're here to help.

"In Sickness and In Health"

In the days leading up to Valentine's Day we are bombarded with images of hearts and flowers, aisles crammed with candy and cards and love-themed gifts intended to prove the devotion of the giver. It's a time to intensify already growing feelings, or to reinforce those feelings that have already been there for a time... It's a time to sell a lot of candy and cards!

But sometimes the feelings that send people scrambling to the local Hallmark store the week before February 14th can be at risk of faltering in the face of illness. The mental and physical fatigue that can result from stress and tasks added to the "to-do" list of a caregiver is potentially devastating to even the strongest relationships. At the very least, it can put the caregiver at risk for needing their own mental health support, and they shouldn't be afraid to ask for it.

We're all capable of imagining the emotions a cancer patient might experience as they embark on their journey of treatment and recovery, but a study published in the Journal of Clinical Oncology and reported on Newsmax.com explored the stress levels of caregivers and found them at risk for their own emotional challenges. Thirteen percent (13%) of the people in the study acknowledged feelings that signaled problems such as anxiety disorder, depression, and post-traumatic stress disorder. It's easy for the outside world to focus on helping the patient as they fight the disease and not realize that a very intense battle is going on in the head and heart of the caregiver as well. Caregivers deal with a multitude of feelings, including:

• fear - of losing their loved one;
  
• anger - about their loved-one's diagnosis and/or for the added burden they they are being required to bear;
• inadequacy - at not being able to do enough to help, or not doing it all well enough;
• grief - for the loss of the "normal" life they were living before the diagnosis; 
• guilt - that they are healthy, or they they are feeling some of the feelings listed above.

The best thing friends and family can do is offer to relieve the caregiver on occasion to allow them some time away from the stress of their duties. For some, it will hard to even admit that they need this help, but it's vital that the caregiver be allowed to need support as well as the patient. It may help to attend a support group for caregivers or to speak to a counselor one-on-one to share fears and frustrations. A good counselor will help them recognize that their needs are important, and that caring for their loved-one is a demanding task - one that requires someone who is also taking care of themselves.

If you are a caregiver and would like information on support groups in your area, check with your oncology clinic staff. Seek out the services of a licensed social worker or counselor to discuss your options for self-care. If you are in Northwest Arkansas you can contact us for assistance. Our licensed social workers are here to help you through this very difficult time - you might meet with them once and feel better equipped for your journey, or you may need someone to offer support on a long-term basis. Either way, we're here to help.

Remember that your love will help your loved-one see light at the end of the tunnel on some very difficult days, but it's okay if it's not enough to keep you from becoming exhausted. Taking care of you will help you take care of them.