Kirklin Clinic Head & Neck Cancer Support, Birmingham, AL
Distributed by American Cancer Society
Pat Sanders, Editor
Third Quarter, 2007
Stretching Through Your Cruise
By Shari Aizenman
Hi again! It's been a while since I have written an article specific to the larys out there. Pat Sanders asked if I would write something about staying aware, healthy and fit while on a cruise since this is something WebWhispers sponsors for their members, friends and families, every year.
I am sure that at some point in time while cruising or planning the trip, the issue arises relating to 24-hour access to dining or snacking with "all you can eat" buffets, dinners where you would like to try several appetizers, desserts unlimited, "help yourself" ice cream machines, and snacks everywhere. Many experienced cruisers comment on how much is available to eat, how delicious it is, and that they usually gain a few pounds. They learn after a few trips to try lots of foods but be sure to select some salads and vegetables as well as all of those cooked in butter and cream sauce. For those who wish lighter foods, there are "heart wise" choices and delicious sugar free desserts.
Don't ruin your fun for fear of adding pounds or inches to your waistline while on a cruise! Just add a routine of using some of those extra calories. I have designed a daily program of stretching, self-massage, and light exercise that can fit into your busy or relaxed schedule, whether for five or fifteen minutes. These can be done in your room, up top, or on deck any time you feel like it. You are welcome to choose which of the exercises and stretches work for you and if any cause you discomfort, do not do them.
First, a warm-up. Wear loose-fitting, relaxed clothing for the following routine. Begin by taking a couple of breaths for fresh air and relaxing your mind. Find a comfortable place to sit. Plant your feet firmly on the ground and allow your head to lead your spine into length, separating your vertebrae (spine) by lifting your head from the crown and allowing your jaw to relax as you become very tall from your tailbone to the base of your skull. Notice your breathing, and as you lengthen your spine, allow your lungs to fill gradually and your belly to expand out, then allow your breath to escape rather than pushing it out. Notice that your ribs across the front of your chest, under your arms and around your back lift effortlessly as you inhale and that you allow any stress or tension to flow out on your exhale.
Once you have achieved length in your spine, lift your right arm over your head and gently stretch it up as if reaching for a rung on a ladder, then reach you left arm overhead and alternate these gentle reaching stretches for a count of ten. Lower your arms and let them dangle by your sides and give them an easy shake-out as they hang. Repeat this overhead stretch for another count of ten.
Next, reach your right arm across your chest and allow your spine a gentle twist, holding to the count of five and as you lower that arm, change and repeat with your left arm, alternating arms to a count of ten. Lower both arms to your sides and shake them out.
Remembering to keep the length in your spine, lower your chin to your chest as much as possible, bring it back to center, then look over your left shoulder as far as possible and then your right, getting your neck muscles warm with this range of motion exercise. Repeat each movement three times. Relax.
Come toward the edge of your seat, keeping your spine long, and push your right knee into the air by lifting your right heel, standing on the ball of your foot. Lower and repeat with your left foot, alternating to a count of twenty, warming up your feet and legs. When you are finished, make five circles with each foot and ankle clockwise and then counter clockwise.
Stand up and gently stretch over to each side by sliding your right palm down the outside of your right leg as far as you can without twisting, bending and tilting all the way to the top of your head. Come back to center and then do the same with your left hand. Take a few deep breaths to nourish your system.
Now, it's time to walk the plank (or the deck) or ride the waves (or overlooking the waves). Remember: the more you move, the more calories you burn and the better oiled your joints will get from the exercise. Allow your arms to swing long, relax your head and take the longest stride that is comfortable for you in the given areas.
If you like walking, find a path that suits you and walk to a count of 100 steps. You might want to go window-shopping or check out special sales on a deck several flights up from your stateroom-take the stairs! If the theatre or restaurant is on your itinerary, take this opportunity to get in a few minutes of exercise. Standing and waiting for an elevator wastes time.
Of course, the top deck has a track with the most beautiful view, or you may want to combine any activities that mean movement through the ship to bring yourself up to your walking goal. Be creative! If you lose your count, start back at 1 until you successfully reach 100. With all there is to distract you, you should be able to get in a good 10-20 minutes of walking by the time you count to 100! If you like, walk a count to fifty, then take a minute to stretch and then continue to 100. Remember to keep your spine long, lifting up from the top of your head and keep your body moving as much as you can.
For your stretch, grab on to any stable object, a railing, for example, and lift your right arm toward the sky going up on your right toe at the same time, opening up throughout your ribs and side. Hold this stretch through a breath, then come to center and repeat on the left side. Do this stretch three times on each side.
If you prefer riding the bike, the gymnasium has bicycles with a beautiful view of the ocean. Sit tall and lengthen your spine, keeping your shoulders relaxed. Imagine yourself paddling one of those cute plastic paddle boats on the lake and reaching the glorious shoreline, a cool, fruity frozen cocktail with an umbrella awaiting you! Pace yourself and count to 100, take a minute to stretch your sides and get back on! Don't forget to breathe!
When your walk or ride is complete, find a place to sit and cool down with a short self-massage routine to refresh and cleanse your muscles. Begin by clapping your palms together five times, then rub them together until they feel warm. Make a soft fist with your right hand and gently pound up the inside of your left arm and down the outside to stimulate the tissues. Repeat and switch to the other arm. Use your soft fists to gently pound the tops of your thighs and then the inner and outer sides of your legs. Squeeze the lower part of each leg with a little compression and turn your ankles three times in each direction. Stretch out your neck by bending your right ear toward your right shoulder, the coming back to center and then going toward the left with your left ear. Bend your chin toward your chest and gently roll your head in a circle, first clockwise, then reverse the direction of your roll.
I hope you have a great time on your cruise...you may come back in better shape than you were when you left! Remember that you can do all of these stretches and exercises at home to stay healthy between trips.
Happy Cruising and Good Health
We have a booklet put together of a great series of articles on Massage and Stretching that Shari wrote for us a couple of years ago. You may find this free download by going to the WebWhispers site at:
On the lower right, choose HeadLines Index and scroll down to the section on HeadLines Downloads. You may choose between .doc files or the .pdf booklet.
You Are Invited
WebWhispers & Friends will be sponsoring an eight night cruise on the beautiful Star Princess. We invite you, your family and friends to join us for a fabulous cruise from Acapulco to Seattle.
April 26, 2008 - Departure
Day 1 - Acapulco, Mexico - 11:00 PM
Day 2 - Ixtapa (Zihuatanejo), Mexico - 7:00 AM - 2:00 PM
Day 3 - Puerto Vallarta, Mexico - 9:00 AM - 6:00 PM
Day 4 - Cabo San Lucas, Mexico - 9:00 AM - 6:00 PM
Day 5 - At Sea
Day 6 - At Sea
Day 7 - San Francisco, California - 7:00 AM - 4:00 PM
Day 8 - At Sea
Day 9 - Seattle, Washington - 7:00 AM
Star Princess is a destination all her own, and with more than 700 balcony staterooms and an entire deck of mini-suites, you can enjoy your own stellar view. Packed with amenities, relax at your choice of four pools as well as the Lotus Spa. Dine on some of the finest food at sea in the Amalfi, Portofino and Capri dining rooms, or go casual with pizza and burgers.
Enjoy a myriad of entertainment options. The theater productions, lounge acts, movies and casino venues are just some of the fun onboard. And from art auctions to shopping to virtual golf, this ship is loaded with fun things to do.
Pricing is per person, double occupancy, and includes port charges and taxes:
Current price from Princess on Interiors
$810 EE Oceanview Stateroom
$895 BB Oceanview with Balcony
$985 Mini-suites with Balcony
We have fantastic pricing on the ones we have reserved above. So, if you want to go, please make your reservations while we have these lower rates available. Full Deposits are $450 per person. We require the total deposit for at least one person per cabin when reservation is made. Balance of deposit is due when other person(s) is added. Full fare payment due Feb 1, 2008 Credit Cards or Checks are welcome
Reservations available through our travel agent: Peggy Byron
Cruise Vacations firstname.lastname@example.org
100 Swan Lake Circle, Birmingham, AL 35242
Doin' the doctor dance...
This is something we all too often take for granted. Most of us did not go to a doctor because we knew we smoked and drank; and in many cases, we did inhale and just didn't want someone to tell us to clean up our act. Sound familiar? Then we got the nagging little cough? It'll go away, we tell ourselves That hoarse voice? I just need to slow down. When it got to I can't swallow or I can't breathe, we started taking it seriously.
Now we are bombarded with doctor speak. What does that mean? Do they ever speak English? You're going to do what to me? Are you out of your mind?
Then melt down. This is NOT happening to me. This is a really bad dream. This is a Twilight Zone script, right? This is the wake up call or the quiz at the end of class.
We don't understand what they are saying and they do not have interpreters. We are having a difficult time understanding what they are going to do and how it is going to be done. The impact of all this is far beyond anything we have ever had to digest in a short period of time. And then they want us to make decisions. Do ya think? Do you want a second opinion? Of course, you haven't confused me enough. NEXT!
I was sent to the hospital with a CooperRand. My surgeon insisted I wait at least a year for a TEP. He wanted me to deal with radiation and the aftermath of healing physically and mentally. I was not sure what I was adjusting to at the time, but I waited. What an amazing year that was. I learned to take care of myself. Being the control freak that I am, after fourteen years I can still count on one hand how many people have suctioned me, at least while I was conscious. I learned that support groups can be the greatest place in the world. Doctors and nurses are nice but, if I need to know how to take care of myself, I usually ask a laryngectomee.
I was a member of the New Voice Club of the Valleys in the LA area. The support when I was there was simply amazing. (I am no longer a member but believe the same quality of support is being offered.) As good or educated as our doctors and support staff are, they do not live with it 24/7. They do their best to get us to the places we need to go to find the answers. An Instructor told me once, "There are no secrets, only different levels of questions." I do not ask my GP about my stomach cancer, and I do not ask my surgeon about on going care issues. Respect the situation they are in and the limits of what they do and/or feel comfortable with. Another thing to remember is: while they do not always have answers to the questions we are asking, we do not always listen to their answers because we want to hear something else.
The first year after my surgery I kept a list of questions for the doctor. When I thought of it, I wrote it down. About a week before my appointment I would fax it to the doctor's office. I still keep a list of my meds and a brief medical history in my pocket (and everyone else's that is on my contact list). As odd as this may sound, we have an obligation to work on our medical relationships as much as any other job or relationship, if not more than some. When we find fault with our care, we have to ask if we gave them all the info to work with or if we are in the best relationship for us. You may not be able to change the situation, but you can change the location.
Hindsight is 20/20, isn't it? We did not all get the same choices, advice, or even the same surgeries. Some had more severe issues than others. While the TEP is a blessing for many, not all are eligible mentally or physically. I could not speak with my TEP, and yet I passed all the tests to see if I was a candidate. Being a chubby lady with a few chins, I did not have a sweet spot that satisfied me for voicing with a TruTone or Servox. I loved my CooperRand but needed an alternative when I started dating someone that could not always understand it.
There are no definite answers as to how this will or won't ravage our bodies. Very few doctors can pinpoint the exact cause of how we got our cancer or how to best effectively deal with it. As we say, in care and voicing, EVERYONE is different and we are going to react differently. Unfortunately we run into walls, we run out of options, we run out of answers to questions we are not sure how to ask. This is not fair, but life is not fair.
I think support groups are not just available to teach us laryngectomy care but to help us with relationships on many levels: spouses, children, caregivers, SLP's, specialists, our GP's, in many cases how we see/feel/live life in general. You are only alone if you want to be! You are a gift to the world. You show others how to go from victim to survivor; you show strength in the face of adversity. Just by holding your head up and walking through this world, you are a motivation to every life you come into contact with. You can choose to sit alone in the dark, or you can live your life out loud. Only you can decide.
Don't look back, it isn't there anymore.
"Let your life speak!"
Caregivers - Our Angels in Disguise
If you tried to make a list of what your caregiver does for you, it would not match a list made by another cancer patient about their own caregiver. The responsibilities that a caregiver takes on for a cancer patient are as varied as the disease. Even after laryngectomy, patients can be very different in their needs with one needing to be fed through a feeding tube and another needing help with bathing and stoma care or cleaning of fistulas and keeping track of medications.
Caregivers may be parents, mates, children, friends, neighbors or any combination thereof. One person may be the main caregiver or you may be relying on different people to help. We do know that our caregivers deserve our thanks and appreciation but they also deserve our cooperation and our efforts to do what we can do to take care of ourselves. At home, caregiving can go from the extreme of almost total care (when you really need some home nursing care) to the more everyday personal care and cooking
Usually when you get the doctor's report of what is going to happen to you, treatment wise, your caregiver is right there with you, hopefully so, since you will be told so many things that it is difficult to remember. While your mind is on one aspect of what they are going to do, such as remove your "voice box", the doctor may already be describing the next phase of what treatment he thinks will be necessary after that. If someone is with you, they may remember or write down what you may not remember later.
To get the feeling of what some of you are going through, I went to message boards online with American Cancer Society. This was a heartfelt answer from one caregiver to another. Somehow, I don't think she would mind my copying it since it is going to be shared with cancer patients and their caregivers:
I pray everything is going well with you. I don't know where you are at this stage with your husband's illness, but I do want to let you know that others ...many others...are experiencing and have experienced that same overwhelming caregiving, I watched my mom caregive my dad and within 5 years, I had to caregive my mom. I know now that there is a great need for volunteers to help with the caregivers themselves. A couple of hours, a home-cooked meal, a quart of ice-cream, whatever little one can give to a caregiver means that they can be cared for also. There is so much a caregiver does that a little relief, no matter how tiny, is the greatest of blessings a caregiver can receive. Please, allow yourself to breathe. Take in a movie, go for a walk, sit outside and feel the cool breeze, take an hour to shop, take a refreshing bath, whatever it takes for you to make time for yourself, without guilt. If you have no one to help, maybe you can call your church and ask for a loyal and trustworthy church member to come sit-in for you while you take an hour or two for yourself. Again, my prayers for you and for all who caregive and those who are suffering from cancer. Thanks for listening.
To get to some of these message boards, http://www.cancer.org/ is the home page for ACS. In the lower left corner, click on Join the Discussions. You will need to join to participate but you can read without joining.
http://www.healthboards.com/boards/index.php has another message board just for caregivers. When you get to that page, just scroll down through the alphabetical subjects and you will find Caregivers. To give you an idea of the threads (a thread is a series on messages under the same topic), here are a few of the titles:
Tired of being a maid
Please Help Me Understand
I think I might need a valium!!!
Is there a safe place to vent?
My dad is dying of cancer and I am crying
Caretaker - Please help
Some of the problems the caregivers had run into were not with the patient but with other members of the family. Some would not help when help was needed financially or never volunteered some relief so that the primary caregiver could get away for an afternoon.. Others thought they could tell the one who was doing the caregiving just how to do it their way, creating more pressure on the one doing the caregiving.
Often our caregivers do not get enough sleep, eat on the run, are afraid to leave us alone and still try to keep up with everything else they used to do. They are heroes who sometimes border on the edge of making themselves sick while they give to us what we need. We can help. As we, the patients, get more able to take care of ourselves, we need to do what we can. Ask for what you need but help yourself where you can.
Kirklin Clinic Head & Neck Support Group
No meetings until further notice
In the interim, we suggest that you join WebWhispers if you have an email address.
We are also invited to attend an All Cancers group with a luncheon every third Tuesday. Call or email Pat Sanders if interested. (See below)
B’ham: Pat Sanders, 205-980-8416; email@example.com
Kirklin Clinic Otolaryngology : 205-801-8456 FAX
Glenn E. Peters, M.D. Glenn.Peters@ccc.uab.edu
William Carroll, M.D. firstname.lastname@example.org
Nancy Lewis McColloch, Speech Pathologist ; 205-801-8460; email@example.com
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 a complete Library of Information, lists of Suppliers, the monthly newsletter, Whispers on the Web, and HeadLines This is the largest internet support group for laryngectomees and is a member club of the IAL
The Official site of the International Association of Laryngectomees
http://www.larynxlink.com Information is available for the IAL Annual Meeting &Voice Institute held annually in various locations. Educational and Fun.
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.
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: firstname.lastname@example.org