Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
THE RIGHT TOUCH
First in a series on Self-Massage for Laryngectomees and others
Touch has always been paramount in the history of being on earth. I am sure that the dinosaurs had a way of nurturing their young. Research shows that primates would rather live without food than without touch. Being a massage therapist, a primary and secondary caregiver to hundreds of willing participants, I have done my own bit of "research". The results: touch is just plain good for you. It is necessary to the growth and survival of the body, mind and spirit.
Many of us have grown up in an environment where touch was not a part of nurturing. How many times in your life have you comforted another in need by placing a hand on a shoulder, touching another person's hand? A simple hug, well-meant, can help a person in grief or fear. Providing touch to one’s self is the ultimate act of self-love. Showing yourself that you care enough to touch is nurturing to every cell in your being and you will learn how different you can feel.
Having been a massage therapist for fifteen years has been a gift for me. I have touched so many different types of people with totally different needs.
Eight years ago, a special person, Pat, was reintroduced to me. I had met her originally at a time when she and my father dated, many years before, and now her son, a client of mine, recommended that his mother come in as she had been diagnosed with and treated for breast cancer. So we met again and our journey in healing began. During that first year, we touched our way through a second cancer that resulted in her laryngectomy. The next path was before us, and we have walked together on this journey. Massage has been an important part of Pat’s healing, an education in self-care. I will share some of the basics of touch and stretching that have worked for Pat and hopefully will for you as well.
Recognize your tools, as they are many and varied. When we think of massage, we always think of the hands as our tools, but as we age, sometimes arthritis and other maladies may hinder our ability to use our hands to massage. There are many massage tools available on the market, as well as some you may have in your home. Do your research to find the right tools for you. In this massage session, the hands are your tools.
Remember the basics of massage. Do not massage swollen, bruised, or open skin. You may want to ask your physician if there is any reason why you should not be doing self-massage.
The right touch. Give your hands a little stretch. Stretching your hands in preparation is important. Lengthen your arm to lock your elbow and gently pull back on each of your fingers, including your thumb. Then bend each finger, then hand toward the palm. Shake your hands, bend each at the wrist and spread your fingers as wide as possible. Repeat this process. You are ready!! Remember to take breaks as often as needed so your hands don’t tire.
You will be sitting for the first part of the session. Keep your spine as supported and erect as possible and your feet planted firmly on the floor. Remember to breathe! Reach across your chest with your right arm, resting your arm on your chest and placing your right hand on your left shoulder. Cradle the right elbow with your left hand for support. Gently begin kneading the tissues of your left shoulder, as soft or firm as is in your comfort zone. You can make circles with your fingers or knuckles, squeeze with your fingers and thumb, or just use pressure to compress the tissues. Work you way up the back of your neck, using the cradling hand to assist in pushing the right arm up. Grasp the back of the neck (sort of like you would a kitten) and squeeze. Hold this tension for ten seconds. Repeat. On the second squeeze, gently stretch the tissues behind the neck by taking your chin toward your chest. Hold for ten seconds. Repeat this process on the other side.
Still sitting, lengthen your spine by gently lifting up from the top of your head. When you do this your chin should drop a little toward your chest. Gently allow your left ear to drop toward your left shoulder, stretching the tissues of the right side of your neck and shoulder. You can assist this stretch by reaching over the top of your head with your left hand and pulling the head in the same direction. Hold the stretch to the count of ten. Repeat on the right side. Next, staying tall through your spine, turn your head toward the left as far as it can comfortably go, and assist the stretch by taking your left hand and placing it on the right side of your face, pulling your cheek toward the stretch. Hold to the count of ten. Repeat on the right side. Now, gently drop your chin to your chest. You can increase this stretch by lifting up the back of your head, lengthening your spine even more. Relax and gently allow your head to stretch back, supporting your head by placing interlaced hands behind the neck and stretching over your hands, allowing your mouth to open and your jaw to relax. Lifting up tall from the top of your head once again, imagine you have a pencil coming out of the top of your head with the lead pointing toward the ceiling. Begin making small circles with your head, drawing imaginary concentric circles on the ceiling with the pencil. After you have drawn five circles, reverse the process, drawing large circles to small in the other direction.
Find a place to recline. Rub your hands briskly together and place them over your eyes. Hold your hands over your eyes to a count of ten. Take a couple of breaths. Gently move your hands toward your temples and rub in circles, first in one direction, then the other, moving out toward your hairline. Rub your forehead and your scalp, softly or vigorously, whichever feels best to you. Give your ears a gentle tug down, and squeeze the perimeters of your ears. Stick your tongue out and make a funny face. Rub your cheeks and jaw, under your jaw, and gently rub your throat. A little cream or lotion can help with friction. Rub your scars and let them know you care. Give your hands a little kiss and your soul will remember, until your next massage, how much love you have within.
Shari Aizenman, Atlanta, GA firstname.lastname@example.org
WHEN DOES CARE-GIVING START? by Pat Sanders
Family and friends gather at the hospital and worry themselves sick during the surgery and later are right there while the patient and loved one is recovering. Then after the patient is up and around, some families step back and say, "OK, it's over now, he survived and is going to do well and they tell us he is going to talk again." Most of the family members go home while the mate, partner, or child of the new laryngectomee is left to take over the caregiving roll. Actually, that is when the rest of the family can really start helping using encouragement and patience. Coming to see someone in the hospital is only a start compared to being there with some regularity to help after they get home. These secondary caregivers can help by running a few errands, taking the new laryngectomee to the store or for a walk or driving to the next doctor visit. They can help with practice talking or, in one case, I suggested the lary work with his young grandson who knows nursery rhymes. Let the grandson say a line and let the lary repeat it with his new electrolarynx or whatever voice he is learning. This will help both of them since it makes the patient practice and it involves the child so he learns to listen differently and to get used to the new voice. It also is a pretty good feeling for the family member that helps when the lary is able to say a new word or phrase. Let them help in the learning and feel a part of the process.
I have met a few fairly new laryngectomees lately whose families say they don't like the sound of the new voice, be it an AL, a half-learned ES voice, or a too bubbly TEP voice. Or they say things like, "When will you be able to talk like that guy talks?" They don't understand what a blessing it is that we can talk at all and how difficult it is for us to learn these new methods. If they were learning a new language, they would learn one word or one phrase at a time. We need to do that. Don't try to talk in long sentences. Pretend this is a foreign language and learn a little at a time…practice, and get your family to help read phrases with you. Answer them with "Yes, thank you.", "No, thank you.", "I'm fine", "Good Morning". Use standard phrases over and over again until they recognize the sound of it. We need the support of our families and friends, our caregivers and, in addition to the patient, they need to rally around the caregiver who is doing the most and help that person to have some time to rest and heal, too. The real caregiving starts when the hospital stay is over.
To go or not to go, that was the question…… Carole Rabin Elorac1212@aol.com
A trip to the beach for the weekend was very hard for me to digest as I was so used to being confined and close to my doctor for over a year. It was only 55 miles away, but to me it seemed to be 3000 miles away. I might as well have gone to California from New Jersey as far as I was concerned.
I did plenty of soul searching and decided to put away my fears and go. After all I was going to be with one of my daughters; how ridiculous of me to be so frightened. But, I was. Finally, I made the decision to go on this journey and made arrangements for the ride to this far away place.
I started to pack a week in advance to be sure that I had all of the particulars necessary to do stoma care. To stay for the weekend, I figured I would need at least 12 foam stoma covers, 200 - 300 Q-tips, peroxide, saline bullets, at least 20 of them, a flashlight and batteries, just in case. After all the closest drug store was about 5 blocks away and I could not take a chance. Last, but not least, my 5x magnification mirror. Oh yes, let me not forget the medications, which is a small parcel in itself. Okay, I am prepared medically, now for the clothes for this weekend trip.
I took clothes in case it was hot or cold. Rain or sunshine, I was prepared for all types of weather. I retrieved my largest piece of luggage and stuffed it to the gills. I could have gone away for a month. At least, I was going, which was for me, a very big step.
When my daughter arrived to pick me up, the look on her face at the amount of things I was bringing was hilarious. But she did not say a word, and placed my baggage in the trunk, and we were off. All of the soul searching, worrying if this or that happens completely disappeared when we arrived at the beach house. I had the most marvelous time with my children and grandchildren. Even walked with my youngest grandchild over a drawbridge to get ice cream. Miraculously I survived my first hiatus from home and had a fabulous, relaxing weekend. Several other trips to the beach came after that one, now that I was such a big shot.
This winter, a big trip is being talked about. I am a tad apprehensive, as it is far, and I will be flying for the first time since my surgery. I know that if I could do the beach trip, as an accomplished and seasoned traveler, I can make it to Colorado. After that Atlanta and the IAL are also on my agenda for next year.
Yes, I know now that anything is possible when you put your mind to it. There may still be some questions, but I know I will have the right answers.
We have been handed a miracle, that of being healed from one of the most frightening diseases on this planet. We live under the shadow of the possibility of it being here again and each year is a gift that we need to use to the best of our ability. We may do all we did before and maybe more. We may have changed for the better in some ways and for the worse in others, but we are not the same.
CLINICAL RESEARCH STUDY
University of Alabama in Birmingham
Do you have "dry mouth" symptoms as a result of radiation treatment?
If radiation therapy for cancer of the mouth, throat, or larynx has caused Xerostomia (dry mouth), you may qualify for a clinical research study conducted at UAB that is evaluating an investigational drug for the treatment of dry mouth associated with this therapy.
You may qualify if you,
- Are at least 19 years old
- Have received external beam radiation therapy for cancer in the head and neck region
- Have at least one intact parotid gland
- Are able to perform daily living activities without assistance
- Are willing to use birth control if a you are a woman of childbearing age
You do not qualify if,
- Your doctor has planned a course of chemotherapy, radiation therapy, or hyperbaric oxygen therapy in the next 12 weeks.
- You have significant cardiovascular pulmonary or gastrointestinal disease
- You have a history of drug or alcohol abuse
To find out if you qualify for this study and to receive additional information please contact:
Clinical Field Coordinator (256) 468-7147
Debbie Dyer, RN
Research Nurse Coordinator (205) 975-0868
Jessica Jeffress will be at our meeting at Kirklin on June 6th in order to answer questions and discuss the qualifications for this study. If you still have dry mouth months after radiation, come in and discuss it with her. This study will require 6 visits to UAB over a period of 12 weeks and there will be a small compensation.
PAST AND PRESENT VOICES
What do you call the voice you were born with? Do you say my original voice? First? Other? Natural voice? How about your native voice or some say your God-given voice. And, what do you call the voices we now have? Second; replacement; current; present, or again, it could also be referred to as a God-given voice.