Travel tips for meso patients

March 28, 2008

Meso spouse Lois Schwarting has put together this excellent reference for traveling:

Travel tips for meso patients

Remember the point of your trip. If it’s for pleasure, plan to enjoy every minute of being in a different environment and get immersed in whatever is beautiful and new!

Request wheelchair assistance

When booking airline travel, request wheelchair assistance. Upon arrival at baggage check-in outside or inside the terminal, request wheelchair assistance to the gate of departure. The airport personnel will wheel the meso patient through the handicapped line of the TSA lines, but the passenger will have to get up out of the wheelchair and walk through the little “archway.” After being cleared, he will get back in the wheelchair to be pushed to departure gate. Even if the meso warrior is feeling quite good, the lines for security may be extremely long and cause undue fatigue and distress. Have the warrior wear slip-on shoes, as going through security they will still have to remove shoes and walk in sock feet!

Have your oncologist sign a form to take with you through security. I leave it in the same folder as our tickets and boarding passes. This will allow you to take some extra nourishment with you, and any meds that otherwise might be problematic. There’s a sample form that follows.

Nourishment

Airlines allow only certain sized containers and certain products through security. They tell you exactly the size, quantity, and type of items you must put in a one-quart Ziploc bag to go through security.

I always want to take more!! This is where the passenger health form comes in handy, and I point to them where it says he has undergone chemotherapy and to the doctor’s signature. It works wonders! Marty drinks one bottle of Boost per day, and I carry one bottle per day of our total trip with us. I put these bottles in a Ziploc gallon-size bag. I have also carried a “soft-pack” cooler which will hold a six-pack. In it I have some fresh fruit, salad, or sandwich with a small “cold pack” to keep food cold. When showing it to security on the conveyor, I tell them he is a terminal cancer patient and has undergone chemotherapy and his food requires special handling and that is what is in the cooler. Once on the other end of conveyor they have me open it up and look quickly. They have never had me rifle through and show exactly what is in there!

Good idea to take these things with you

CD of last CAT scan and written report of scan. If you need to take your warrior to an ER, these will be very handy. Go to the records department at your radiologist and request several days prior to travel. If you can’t get a CD ask for the actual films.

Pain medications: take some even if the warrior has not yet experienced pain.
Anti-nausea medications: just in case!

It’s best to check with your airline if the warrior is on oxygen, because they may have you follow a particular rule or complete their form and you want to be sure to comply. We are thankful that as yet we have had no requirement for this information. This form has been made up based on sections of one which we were required to complete for taking a cruise to Alaska in August 2007.

Passenger health
Name
Date

Illnesses or operations:

Mesothelioma

Current medications (list all):

Medicine allergies:

Equipment that the passenger will be bringing onboard (oxygen concentrator, wheelchair, walker, liquid oxygen, etc.):

Has the patient been hospitalized in the past year?

Is this patient medically fit to travel?

Comments:
(Medical information for emergency situation.)
(Note: Handwrite anything like below ) — fills up more space — make CHEMOTHERAPY stand out when writing!)
Thoracentesis/date
Thoracoscopy/date
Diagnosis from lab/date

Chemotherapy [Here you could write in “3-week interval cycles Alimta/cisplatin, dexamethasone, B12 shots] I handwrite date, doc’s name, address, and have the doctor sign.

Doctor’s information:

Signature_________ Date ______

Doctor’s Name _________________

Address _____________________

Telephone _____Fax ___

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Weight loss after chemo/surgery for mesothelioma

March 27, 2008

One thing that mesothelioma patients have to contend with after undergoing chemotherapy and/or surgery is weight loss. A loss of 30-40 pounds isn’t uncommon, and although there are plenty of people who have weight to spare, the issue is much more difficult for patients who start off lean. Since the surgery, chemotherapy, and the cancer itself can all work to greatly depress appetite, lean patients who shed 30 pounds may find themselves losing most, if not all, of the natural padding on their backside.

Lois Schwarting, meso spouse and caretaker extraordinaire, invented a solution for her husband Marty that makes it much easier for him to sit down: what she calls a “butt pillow.” By stacking several layers of eggshell foam and enclosing it with a pillowcase, Marty has a lightweight, portable, and eminently comfortable cushion that he can use whenever he sits. Lois has sent the photo below to show the type of foam, as well as instructions about how to make the pillow:

“Here’s pics of how I built a butt pillow for Marty. Then I made a pillowcase right size to slip over and stitched end closed. Use some E6000 glue to hold the pillows in place, and then draw yarn through the 3 layers (loop of yarn in the valley part of foam so not irritate skin. Just tie in a bow on the bottom layer to help hold in place! Marty’s “butt pillow” is usually in a recliner which he usually sits in, but it or the “spare one” is taken with them when leaving house and ….. (he uses it in the other places)

“Some people have weight loss and body wasting caused by cancer even before diagnosis and it continues during surgery or chemo, so this can really make life more comfortable.

“Here are dimensions of the foam pieces:
Purchase 1-1/2 thick egg-crate foam.
Cut four pieces 6 inches by 9 inches.
Cut one piece 9 inches by  18 inches.

“E6000 glue works great, as it will not “melt” or “eat” the foam. Apply a few drops of glue to the “bumps” of the eggcrate side of the foam in a couple of places. Stack the foam pieces together as pictured. For added stability, run some yarn from the bottom piece of foam up through the small pieces, making sure loop yarn is in the middle, and pull back through to underside and tie in a knot or bow.

“Caution: Even a small bow made a ‘red bump – sore spot’ on Marty’s skin when I’d tied yarn in a bow in the depression of the top foam! I made a pillowcase-type cover, slipped it over foam and stitched the end closed. I made two “butt pillows” so that when one gets squashed from a lot of use, I replace it with the second and let the squashed one plump back up. My first ‘prototype’ was for a trip to Alaska. I had folded over some fabric alongside the length of the 17-inch foam and drew cord through it. I slung it  on my shoulder and had it ready to put on a bus seat, train seat, or wheelchair seat. I had made that one with only two layers foam, but he likes the 3-layer foam pillow better! For back comfort, we have a piece of foam 15 inches by 21 inches and 1 inch thick, which is slipped inside a pillowcase and used behind Marty’s back when he travels.”
“Butt” pillow

Pillow foam

Finished pillow 1

Finished pillows, upper and lower

Finished pillow 2

Sweet doggie not included!!!