HEADLINES
Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
August 2002
 

Support: What Is Enough and How Do I Get It?

We read it everywhere today, "Support is extremely important in the healing process."  Studies show patients attending support groups are coping better and living longer!  Doctors are learning to question their patients about available support---who is there to help you?  How do we know what’s enough support and what’s not?  And how do we go about increasing our current support or finding resources for building our support for the first time?

 

We can begin by asking ourselves some basic questions:


1.      Who is it I turn to when I need accurate feedback - the people in my life from whom I can hear positive, negative, and constructive feedback?
2.      Who is there to affirm me - only giving me positives?
3.      Who is it in my life I can turn to when I’m overwhelmed - who is able to help me regain my balance?
4.      Who is it I can share my secrets with - who will keep them safe?
5.      Who stimulates and challenges me - spiritually, mentally, and physically?
6.      Who are the other people in my life - ones could help fulfill the above needs for me?
7.      Finally, we ask ourselves- who looks to me to meet these needs for them?

These questions can help us begin to identify our personal support system or where to begin in building support.  Some will find they are meeting these needs for others, but have no one who meets these needs for themselves.  This can help us understand why our tank is on “empty”----we’ve been receiving “0” and giving out 100%!  So it’s a good time to refuel and to become a “receiver”, possibly for the first time in a looooong time!

Sometimes as we answer these questions we may identify we are looking to only one or two people in our lives to meet all our needs.  Wow! No wonder some caregivers are so overwhelmed!!  This is where question #6 comes in to help us------many times we are surrounded by friends and relatives who want to help us.  We may be essentially starving in a sea of plenty!

Some may find these questions helpful in beginning to “name” needs.  If we come up empty in response to the questions, then we can keep these questions handy and begin to think about what our needs are and why are they important?  We can look back in our lives and remember the people who have been there for us in the past.  It can be a starting place in building support.

We all have the basic need to have “meaningful work” or a “sense of purpose”.  This is where question #7 can be helpful. The role you definitely didn’t choose, that of being a cancer patient, can sometimes throw a blanket over your other roles.  So it can be extremely important to take time to acknowledge whose needs you are meeting and how.  The answers can help us know when we’re overextended or maybe when we want to seek resources for increasing our giving.

The ways to increase our incoming support are numerous and the resources many.  The answers will be different for each person.  Some people benefit greatly from a local support group while others benefit most from individual support.  If you find you want some assistance with your support system, there are social workers, clergy, and counselors who can help you identify the resources most helpful for you.  The important step is to act! Unmet needs lead to increased stress and both lead to decreased health and healing.  Answering the questions and checking the list of resources will be a good starting place for giving and getting the help you deserve!

Support Resources: American Cancer Society, Cancer Cares, Alabama Oncology Foundation, Volunteer Centers usually through your local United Way.

Article written by Muriel Thompson who is a clinical social worker in private practice in the Birmingham, AL area, providing counseling services for patients and their family members. She can be reached at 205-542-1438.
 

The Magic Servox

I don’t make much of a sound when I laugh, but this time I almost roared. I went up to the Runway Club (a small nightclub owned by a friend) last night and got into a pool game (partners).  My partner, John, and I were playing against two Hispanic fellows that were both intrigued with my Servox and the way I talked.  After a lengthy explanation, one of the guys asked me what the two buttons were for.  I told him that the top button was for English and the bottom button was for speaking Spanish.  I then proceeded to demonstrate.  Using the top button I said, “See, this is used when speaking English”, and then I switched to the bottom button and said in Spanish, “& este es por hablando en Espanol.”   I didn’t crack a smile.  Both Hispanic guys were astounded and began jabbering together about the wondrous machine that I had and wanted to try it out themselves.  Other people around me, overhearing much of what was going on, began laughing and pointing at the guys and they finally realized that I had been pulling their legs.  One of them actually “blushed” with embarrassment.  By the way, John and I won the game. Ah, the magic Servox. What a wondrous thing to have. :-)

"Vance Redden" Rvrbst@aol.com
 

THE RIGHT TOUCH III

Third in a series of articles about self-massage and stretching

How do you know when it’s time for a massage or time to stretch, or even if you need to do either?  What are the benefits?

As I said in my first article, touch is necessary for the health of the body, mind and spirit.  There is a great deal of research that has been done on the benefits of massage and stretching.  The two main physical benefits of both are increased circulation and increased mobility in the soft and bony structures of the body.  The psychological benefits are increased relaxation, a sense of vitality and heightened awareness.  The spiritual benefits are a better connection with yourself and a sense of serenity. 

Stretching.   Isn’t that something we do naturally do?  When my clients ask, “when is the best time to stretch?” I refer them to a lesson I learned from my cat.  I notice whenever she gets up from a lying down position she always stretches out!  How smart is that?  I believe that there is not a wrong time to stretch.  Anytime you are doing or expect to do any type of physical labor or physical task is a good time to stretch. For how long should you stretch?  Here’s a formula.  Allow five minutes stretching time for each forty-five minutes of activity. The more arduous the activity, the more stretching time you need to add to the formula.  This includes working at a computer or at a desk job, or sitting in front of the TV.   

Massage is another anytime activity.  Make it an everyday, anytime routine.  Get a friend or partner involved.  Self-massage?  Allow yourself a little self-indulgence!  Remember:  if it feels good, do it!

In this session, we will incorporate the hips, ribs and lower back, as well as the diaphragm (your breathing muscle) into your massage and stretching routine.  Remember that these sessions are designed for you as a laryngectomee, but anyone can benefit from them. 

You will need a bath towel, rolled up tightly lengthwise, for the end of this session.  You can roll two towels together if necessary.  See how it feels with one, and then decide if you want the second. 

This session will be done lying on a firm surface, preferably the floor or on your bed if necessary.  If you have lower back problems, place a firm pillow under your knees.  You may choose to put a very small pillow or folded hand towel under your head, but nothing much larger. Begin by warming up.  Gently ease yourself to the floor and relax.  Breathe slowly and comfortably.  

Reach one arm over your head and let it lie on the floor above you, then follow with the other.  If you have trouble getting your arm flat on the floor, use folded towels to prop them at a comfortable level.  Reach your right hand up, as if climbing a ladder.  Then release your ribs as you stretch and reach up for the ladder with the right hand.  Breathe and allow your body to relax with the stretch.  Reach up and release ten times on each side, alternating right and left.  Then slide your arms down to your sides, stretching out toward the sides all the while. When your hands are by your sides turn your palms facing down.  Rest your arms at your sides for a moment.  Reach your right hand down toward your right foot, sliding your palm by the side of your leg along the floor, allowing your head to gently roll to the right as your body gently curves to the right.  Reach down as far as feels comfortable for you and hold to a count of ten. Breathe into the left side of your chest and rib cage, feeling the expansion on the left side as you inhale.  Bring your right hand back to the starting point and repeat on the left side.  Allow yourself plenty of time and reach down ten times on each side, alternating right and left.  Remember to allow your head to roll and your neck to be soft and flexible with your movements.  Take a moment to notice any changes in your breathing and see if your chest is more relaxed. 

Now it is time to incorporate your legs.  Position your legs so your kneecaps are pointing toward the ceiling, and your toes are pointing straight up.  Gently step down with the heel of your right foot, sliding your heel on the floor away from your buttocks, bringing your toes headward, straightening and lengthening your leg, making it long, long, longer.   Breathe as you step down toward the far wall.  Hold for five seconds.  Release and straighten your left leg, stepping down with your left heel as you gain length, allowing your lower back to release to allow you even more length in your leg.  Hold to the count of ten.  Once again, step down ten times with each leg, alternating right to left, rocking through your pelvis as one hip goes up and the other down, a natural movement that comes with the stretch. 

Notice as you slowly move:  is there a place that is hindering my movement?  If so, you can locate that spot, and if it is within reach, stop your movement and gently massage the area for a few seconds with you hands or fingers.  You can massage those harder-to-reach places by placing a tennis ball between the spot and the floor and gently releasing the tissues as you lie on the ball.  Then continue with your movements. 

Are you ready to put it all together?  Once again, place your arms above your head, one at a time, resting them on the floor.  Time for a little coordination.  Give yourself time to practice this and be patient.  Breathe.  Reach up for the rung of the ladder with your right hand, lengthening your arm, and step down with your right heel, lengthening your leg at the same time.  Feel your ribs open on the right side and your chest fill with healing breath as you stretch upward and downward.  Allow your head to roll in the direction that feels natural for it.  Release after five seconds and as you release the right side, reach up and down with the left hand and heel.  Breathe.  Are your hips going up and down, your shoulders rocking on your spine?  What in the world is going on here?  You are rocking and rolling!!  Continue this healthy stretch for as long as it feels good to you.

Roll over on your side and push yourself up to a sitting position.  Retrieve your towel and place it lengthwise next to you .  You will need to get back to the floor, lowering yourself onto the towel, so the towel runs the length of your spine, on your spine, from the bottom of the curve in your neck to your tailbone.  Allow yourself time to adjust to the towels presence.  Your breath is the tool you use to relax, allowing the tissues of your spine to relax over the towel with each exhale. 

Gently draw one leg up at a time, coming to the lie-down-with-your-knees-bent-up position.  With each of these stretches, you will repeat three times on each side.  Slowly draw your left knee toward your chest, pressing your lower back and sacrum (the triangular-shaped bone at the base of your spine) down onto the towel as the knee comes up.  You may choose to wrap your interlaced fingers around your knee, gently increasing the stretch.  Hold your knee up for ten seconds, release your lower back, then lower your leg.  Repeat on the other side. Squeezing your knees together, gently allow your knees to fall a little bit to the right side, stretching out the left lower back, maintaining your balance on the towel.  Hold for ten seconds and repeat on the other side. Finally, raise your right leg and straighten it at the knee, with the sole of your foot facing the ceiling.  See if you can step up toward the ceiling. Bring your leg back to the bent position and place your foot back on the floor and repeat on the left side.  Roll to one side and come to a sitting position, then, when you are ready, to a standing position.

Rub your hands together briskly for five seconds.  Clap five  times.  Give yourself a good pat on the right shoulder, and then the left.  Congratulations!  You have succeeded in letting your self know that you care enough to do something about it!!  Be well and at peace.

Shari Aizenman, Atlanta, GA
wrldlygrl@juno.com

HOW MUCH DO YOU PAY FOR YOUR DRUGS?
Syd Gartenberg GBPlans@aol.com

If you are paying for your own drugs, be aware of how you can buy them cheaper.  A lot of people have been importing their prescriptions from Canada quite legally.  The savings can range from 25% to 70% of the cost here in the U.S.

Prescriptions in Canada must meet the same rigorous standards as in the US if not more so.  Many of the drugs sold there are made in the USA.  Some of them are sold under different names but the manufacturer, quality, dosage, etc.  are identical.  For example, Prilosec in Canada is sold as Losec.

There are numerous sources of prescription drugs in Canada that will deal with you by mail.  You can do a web search using any good search engine.  Most will arrange for the Canadian physician to re-write your American doctor’s prescription but there is usually a fee for doing so.  There are also shipping charges to deal with. An excellent source for these prescriptions is a non-profit organization.   You join and then send them your American doctor’s prescriptions.  They will  have a Canadian doctor re-write them and then send the drugs to you for a  flat $10 shipping charge per shipment not per drug.  They list the names of  the drugs, dosages, quantities and costs (in American dollars) on their  web-site. This is one of their web-sites: http://www.wecaremedicalmall.org/80.htm

By way of example, Prilosec (Losec) is dispensed in bottles of 28 capsules - 20 mg. is $55.00 per bottle and 10 mg. is $43.75.  This works out to a little less than $2.00 per capsule not counting shipping for the 20 mg.  They carry Fosamax but, at this time, most Canadian pharmacies do not have the 70 mg. version (the once weekly tablets).

You may want to check this out.  Do a comparison with other web-sites (I found over a dozen). Drugs here are way too costly - they sell for less in every other country in the world.

Editor's note.  Since Syd turned in this article, he has used http://www.canadamedexpress.com/ to order medication for his daughter, who does not have prescription coverage.  He writes, "You must first print out a four page form that includes instructions (page 1), a patient release and disclaimer form that must be dated and signed (page 2), a patient medical questionnaire that must also be dated and signed (page 3), and an order form (page 4).  The doctor's prescription must also be sent in.  The pharmacy has a toll-free fax line so the entire four pages (pages 2 through 4 plus your doctor's prescription) can be sent in by fax.  This pharmacy, as well as nearly every other one that I researched, requires that you must have been on the drug for at least 30 days before they would fill your order. The bottom line is that this particular prescription ended up costing me $.46 per pill instead of $1.76 to $1.80 per pill here.  That is one heck of a savings.  When I reorder, in about three months, the only paperwork that I need to submit is the order form.  I had the doctor write the prescription for one month plus 11 refills so I am all set with this for a full year."

There have been a number of  National magazines noticing this trend.  AARP and Parade both had articles recently.  I went to a Search engine, as Syd suggested, and came up with some sites you might want to use, in addition to the ones mentioned above, to educate yourself.

http://www.makoa.org/freemedicine.htm,                    http://www.thecanadiandrugstore.com/,                   http://www.canadapharmacy.com/

 

Kirklin Clinic Head & Neck Support Group Meetings
Will bring back new product and idea information from the IAL for discussion
Next Meeting on August 1st ,  2002
First Thursday of each month, 10:15AM – 11:45AM
Kirklin Clinic, Fourth Floor Conference Room (Down hall by elevator)
Bring parking ticket for free parking validation

 HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.com (Note: New Telephone Number)
Tuscaloosa: Charles Lamar,  205-758-1176; neckbreather@prodigy.com                                                                                                                                                           

Kirklin Clinic Otolaryngology :        205-801-8456 FAX
Glenn E. Peters, M.D.       Glenn.Peters@ccc.uab.edu
William Carroll, M.D.           william.carroll@ccc.uab.edu
Nancy Lewis McColloch, Speech Pathologist ;  205-801-8460;  nlewis@uabmc.edu

American Cancer Society in Birmingham:                                                    
Nancy Price, 205-930-8876;  nprice@cancer.org
ACS 24 hour help or message line 1-800-227-2345 
 

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES  http://webwhispers.org  is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as sections with Helpful Hints, lists of Suppliers, a monthly Journal, and Humor.  Laryngectomees, caretakers, and professionals can meet on two different   e-mail lists to exchange messages, ideas and support   In addition, there is a forum with message boards and a chat room for social interaction.  This is the largest internet support group for laryngectomees and is a member club of the IAL

LISTSERV FOR LARYNX CANCER A listserv with exchange of e-mails relating to larynx cancer. http://listserv.acor.org/archives/larynx-c.html  to join or leave the list and for members to be able to go back in the archives to read all messages since the list started.

A Laryngectomee site from the United Kingdom    http://www.laryngectomees.inuk.com  presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America. They have all HeadLines since 1997

The Official site of the International Association of Laryngectomees
http://www.larynxlink.com  has all of the current information on the IAL, helpful information, plus many newsletters from all over the US (including HeadLines for the last two years).  Information is always available for the IAL Annual Meeting and Voice Institute held once a year.