HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

May 2006

 

My Travel Needs    by Rita Myers

I have been a laryngectomee since May, 1999.  In addition, I also have asthma and emphysema.  Since my lung capacity is limited, I  cannot cough up any mucus that accumulates which means that I carry a suction pump with me wherever I go -to the store, church, hairdresser or Support Group meetings.  While I drive short distances, I hesitate to drive for over a few blocks as I fear that my coughing and choking might cause me to have an accident.  Fortunately my husband, family and friends have been very supportive in chauffeuring me around.  The suction pump is heavy for me to carry and the weight of it pulls on my stoma, therefore, my “escorts” kindly do it for me.

 

We have made a few trips since my surgery.  In October of 2000 we took our first long overnight trip down to Tennessee for my husband, Ric, to join other past student government presidents in a program honoring their Dean of Students.  We got along pretty well despite  taking along two nebulizers, two suction machines, one humidifier, one battery charger and a bag of medicines.

 

Our first plane trip was in March 2001. We flew to  Indianapolis for our niece’s wedding.  This was our first big test of travel.  Armed with a letter from Dr. Saunders explaining the need of all the equipment (plus makes, models and serial numbers). our biggest challenge was getting all the equipment packed  with what we needed and handling the carry-ons.

 

We waltzed through security at BWI including having an attendant suggest I use a wheel chair.  Another guard insisted that we sit on one of their carts and they took us down to the boarding area.  There they put us in line to be boarded first.  The pilot actually wheeled me on the plane during the pre-boarding. When we boarded the plane we sat in the first row of seats, complete with our bulky suction machine, nebulizer and medicines.

 

The flight was rather uneventful and there was a wheel chair waiting for us when we landed in Indianapolis. Boarding at Indianapolis on the return trip was not as smooth – but it still went okay after Ric commandeered a wheel chair.

 

Encouraged by the relative success of the first air trip, we decided to brave another trip to Indianapolis in February, 2002 for the wedding of a nephew.  This was after the infamous 9-11 and security was a whole lot tougher.  Although we got a wheel chair, I had to get out to go through security, take off my shoes, etc.  The real fun and games of this trip was the return leg from Indianapolis.  They separated Ric and me.  They took my Servox, took it apart, then asked me what it was.   Big deal – I couldn’t talk.  My husband was in back of me and tried to explain while I just dropped my collar and showed them the hole in my neck.  One of them turned a little green – but passed me.  They actually waved a bomb sensitive doiley over the nebulizer and suction machine and down Ric’s pants.  The security guards got a little snippy with us.

 

The next big challenge was a much longer trip to see our daughter and six month old granddaughter.  In 2003 we flew to San Antonio,Texas.  The flight was a non-stop so our boarding at BWI was much the same as our second trip.  We had a wonderful visit with our daughter,  Lisa, her husband Mark and our granddaughter,  K.T.  Lisa is an OB/GYN doctor in the Air Force.  She showed us around her facility at Lackland Air Force Base.  Many of her cohorts had not seen a laryngectomee – so I was the star of the visit.

 

Coming home we ran into a few difficulties at the airport.  Dr. Saunders letter did not mean much to the Texas handlers and we were afraid we would miss our flight trying to explain our situation.

 

We were unable to get a non stop return flight, so our trip went from San Antonio to Houston.  This meant that we had to go through security a second time, taking off shoes, socks, etc.  No wheel chairs were available and because of the hold over time I had to nebulize right in the airport.  My husband found a secluded corner so that I could do that which I had to do.  While nebulizing, a pilot walked by and said that he had a sister that had to do this and he wished me well.

 

For the first time on the trips the “bulkhead” seats (first row) were facing one another.  Across from us was a young couple on their honeymoon.  The young lady’s grandmother was a laryngectomee.  We also had a head and neck nurse across from us.  They very kindly offered to hold our equipment so Ric and I could have something to eat and drink.  They questioned us about my situation and Ric explained our circumstances.  The Stewardess explained the workings of the oxygen masks to the passengers and told Ric in an emergency to take care of himself first – then tend to me.

 

Overall – we found everyone to be more than kind and helpful.  Lots of adults (and we find this happening often) seem embarrassed and look away when they hear me talk.  Children are great.  Most of them want to try out the Servox.

 

As a result of our experiences going to Indianapolis and Texas, we now know what to expect and future travel will be a lot easier.  My suggestion to you is that if you are planning a trip by air – do as the Boy Scouts do “Be Prepared”.  We are different from the average traveler in that not everyone has ever been in the company of a laryngectomee.  The airline people are accustomed to passengers in wheel chairs, or on crutches, or Mothers traveling with babies and young children, who can communicate a lot easier than we as laryngectomees can do.

 

At the present time, our daughter along with her husband and our absolutely beautiful three year old granddaughter are stationed in Anchorage, Alaska.  We’re looking forward to visiting them sometime in the  future and know that our past traveling experiences will make it a thoroughly wonderful trip.

 

IDEAS FOR LARYNGECTOMEE TRAVEL - BY AUTO, BUS, TRAIN OR PLANE

 

1)                              Laryngectomee Card

2)                              List of all medications you take along with a list of your doctors-see sample

3)                              Suction machine (if necessary) with attachments

4)                              Nebulizer (if necessary) along with medicines

5)                              Battery Charger for Servox along with extra battery

6)                              Back-up Servox

7)                              Humidifier

8)                              Electrical cords, extensions and strips

9)                              When packing any of the above, mark luggage “Fragile-Medical Equipment”

 

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DEALING WITH TELEPHONES AND COMPUTERS

Pat Sanders

 

Everyone says I speak well and sound much like I used to, but maybe they are using a little false memory or love and affection with their listening.  Unfortunately, the telephone computers may not have those “feelings”!  . Odd that the computer end of the conversation was a beautiful human voice and the human end was just raspy enough to give the computer’s understanding a hard time. It was quite a come down when I got half way through a "conversation" with one of those computers choosing from the words it asked for when we came to a dead stop.  The choice it gave me would have been a complete misreading of what I needed.  I tried and tried to get it to understand by saying the cue word that should have let me go on but it kept insisting that I say one of  it’s words...then I tried operator, agent while it kept repeating the same sentence .  The funny thing for me was I could have sworn that it's voice got more and more annoyed.


So for all of you who get as frustrated as I do when asked to punch numbers into the telephone or "say" something that the computer often doesn't understand, here is a tip for you.   How to get a real person at the other end of the telephone.  

 

http://gethuman.com/ is a new web site that you will want to bookmark or perhaps print it out and keep it handy. This is a list telling you what to do to get a person at the other end.


This list is arranged by types of businesses but you can get it listed alphabetically...note link at top. Here are just a few of the samples:

Under Financial:
Countrywide Loans 800-669-5864                  *0 repeatedly
Diner's Club 800-729-5309                             2
Discover 800-347-2683                                   ****
e*Trade 800-786-2575                                   #### (4 pound signs)

And some of the Government numbers
Medicare 800-633-4227                                  Say "Agent."
Social Security 800-772-1213             00
US Dept. of Transportation 800-832-5660       000
US Postal Service 800-275-8777                     Press 5 four times until you hear
"transferring" (If you then get a recording, press 2.)
Veterans Affairs 800-827-1000                        1,0

I printed it out the entire list and put it with my telephone directory.  (SLPs, please note that this is a handy hint for your patients.).

 

I would like to share another lary’s experience with telephoning (taken from an email from a WebWhispers member).

 

Hi Pat, 

I thought you'd appreciate a recent experience I had with a major shipping company. 

 

I'm a "Traffic Manager" and frequently have to follow up on late or lost shipments.  Usually I do it over the web or have one of my employees call the carrier.  But the other day, everyone was out and the shipment tracking number wasn't on the web.  So a quick call to Customer Service and their voice response system.  Expecting the worst, I was pleasantly surprised when I successfully navigated the system by giving one word responses and, in the end, was forwarded to a "person" for assistance.

 

That's when my problems started.  We went back and forth over the shipment details and I had to repeat myself multiple times for each question.  This situation was compounded by her frequently interrupting me and reading back incorrect information.   Finally, she became so frustrated she asked if there was anyone on my end who could interpret for me.  "No”, I said, “but if you want I'll talk to your computer again. It didn't have any problem."   After an awkward moment of silence, she asked for the information again, and this time I repeated it without interruption and, guess what?  She got it!  More importantly, we located the errant shipment and we were able to redirect it to the proper destination. 

 

So, while automated systems are frequently the bane of our existence, sometimes they aren't as user un-friendly as a human customer service representative. 

Charles Kinnear

 

COME JOIN US IN CHICAGO

 

International Association of Laryngectomees

54th Annual Meeting and 46th Voice Institute

 

July 19-22, 2006

Hyatt Regency Woodfield Hotel in Schaumburg, IL.

Nine miles fromO'Hare Airport and 30 miles north of downtown Chicago

Rooms At $99 Per Night, Single or Double Occupancy.

Free Parking

Across From the Woodfield Mall—Over 300 Stores and Many Cafes/Restaurants

Fitness Center With Indoor and Outdoor Pools

 

 

Scheduled activities

Meet & Greet Reception

Daily Coffee Breaks

Banquet and Dance

Sing-A-Long

Vendor Exhibits

Special Spouse Sessions

Key Annual and Joint Meeting Sessions

TEP Voice Restoration—Then & Now

Neck and Shoulder Dysfunction

Outreach Training

Public Speaking

Patient and Family Visitation

Medicare: The Insurance Maze

Managing Grief, Anger, & Depression

Quality of Life Following Head & Neck Cancer

Issues in Survivorship

Stroke

Medical Panel

Palliative Care/ End of Life Issues

Voice institute Sessions

Over 25 Sessions Geared Toward Speech Language Pathologists and

Laryngectomee Trainees

Hands On Training for SLP’s and Laryngectomees

World Class Staff

Scholarships Available

 

For further information, go to the IAL website at http://www.larynxlink.com/ and click What's New, call our toll-free number, 866-425-3648, check the May edition of the IAL News, or write to Jack Henslee, Exec. Dir, P.O. Box 691060, Stockton, CA 95269-1060.

 

The Voice Institute is a 4 day program and the Annual Meeting is a 3 day program. Only

laryngectomees and Speech Language Pathologists can register for the Voice Institute.

However, others may register for the Annual Meeting and sit in on most Voice Institute sessions.

 

 

 Kirklin Clinic Head & Neck Support Group Meetings
No meetings until further notice

WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES

 In order to stay in touch with other laryngectomees, we suggest that you join WebWhispers if you have an email address. Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support. This is the largest internet support group for laryngectomees and is a member club of the IAL.  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 a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and all past issues of this newsletter, HeadLines.  There is no cost to join.

LUNCHEON MEETING

We are also invited to attend an All Cancers group with a free luncheon every month, third Tuesday, 11:15 -1. 

Call or email Pat Sanders if interested in any of the above and want additional information.  (See contact info below)

HeadLines Newsletter:
B’ham:  Pat Sanders,   205-980-8416; pat@choralmusic.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          

 

For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham:   nprice@cancer.org