Surviving London and on to York

Although we’d managed to bring some Jevity with us on the flight, and some of the new Ensure puddings, both W and I were worried about easy access to food in England. And with good reason. Ensure Plus isn’t all that readily available in any bulk amount. Our first night in London we checked a Boots pharmacy in the Victoria shopping mall. I bought about nine bottles, their entire stock.
I knew my puddings, Jevity, and Ensure would last about five days. And I assumed that when we got to York, Ensure Plus would be in the grocery stores or at Boots. That adage about assuming is so true. We couldn’t find any Ensure or Ensure Plus in the grocery store and the pharmacy only had five bottles in stock.

A piano player in York

Since we were climbing at least three hundred steps a day and walking a good two to five miles a day, I was going through food much quicker than usual.
On the up side, the drug stores can get Ensure Plus overnight in any quantity and amount. In fact, if you order early in the morning, it’s there by later afternoon.
What I learned so far is that I can go anywhere with my tube, as long as there is a drugstore close by to order food.

Morning sun in the York train station

I also learned to pump two cans per feeding instead of one. I could then go for several hours w/out having to eat again, regardless of how fast we walked or how many stairs we climbed. I also learned to carry the Ensure puddings, two of them, in my purse. If you can swallow water or juice, you can eat these and they eliminate the need for a private place to pump food.
Seven days into the trip and all is going remarkably well. I want to officially retract my previous advice about flying overseas. If you’re in good health, do it! You can adapt easily to spacing out your feedings and eating more at one time.

London by Tube Day 1

I am writing this backwards since I had no access to a computer while we were there. So please bear w me if it’s a bit chaotic. We packed about ten cans of Jevity and four 4pks of Ensure pudding. Took up precious clothing space and made for really heavy carry on. Even w a medical note, I got frisked and wanded at the Kansas City airport. They were kind, gentle, and passed me on through.
With my fear of flying, the two valiums I downed kept me out most of the flight so I only ate one or two packs of the Ensure pudding. The calorie ct isn’t high but it does the job in dealing with hunger and energy. Since I slept most of the flight, none of the privacy issues I had anticipated in earlier posts materialized. The little Ensure pudding cups worked fine to keep my energy up. But by the time we arrived in London and I had my first real opportunity to pump some food in me, I had a total meltdown. Apparently my sugar had gone so low during the thirteen hours of travel time that my brain was completely out of whack.
Part of the problem was simply being in a room smaller than most American jail cells. The room I had booked based on price and internet reviews was a total disaster. One double bed pushed up against the wall, with a single metal folding chair, and only two foot of clearance between the bed and the other wall. The tv was mounted near the top of a twelve foot ceiling, meaning you had to turn your head practically upside down to watch it.
The window curtains were barely hanging onto the rods and the curtains were held shut by a bobby pin. Two American pennies lying on the floor told me the rug hadn’t been vacuumed. The bathroom sink was so small you couldn’t wash two hands in it simultaneously. And the worst part was, we knew we couldn’t get a room elsewhere because the pope was in London and everything was filled up.
With a can of Jevity in me, reason returned. We weren’t here for the room anyway. Time to go get me some London. Mainly the London Eye.
Here are a few pics from my top item on my bucket list, riding this huge ferris wheel like thing suspended four hundred and fifty feet above the Thames River. And I have acrophobia.

A flight capsule on the London Eye

This was a proud moment for me: to step onto this moving capsule and ride this amazing wheel. It took thirty minutes to make one round. Inside the acrylic capsule it was surreal. My fear washed off in about two minutes and I couldn’t take enough pictures. The view was amazing. Sites that I knew well from other visits looked completely different, viewing them w a bird’s eye. At this moment, I would highly recommended anyone w a feeding tube wondering about an overseas trip…Go. Go and have the best time ever. More to follow.

Well, @#$%

The best laid plans and all that @#$%. Our trip has been delayed. Last minute medical issues. Wouldn’t you know. I will keep you posted on when our flight gets rebooked. Not much else to say after that. I’m too disappointed to write more.

We’ll Fly, We’ll Fly Away…

It’s less than a week til we fly from KC to Toronto and then to Heathrow (#$%^ non stop tickets were just too expensive). This morning I did a trial pack. We’ve bought two pieces of wheeled carry on luggage w a kazillion little hidey holes and zippered areas, and we hope to live quite well out of just those two bags.
So , as a tube feeder, I did a trial pack to confirm everything extra for tube feeding will fit into the limited space we have. The bigger of the two carry-ons will be like a Jack-in-the-box when TSA inspects it. The bag is packed to bulging and needs my “bum” on top to get the thing zipped.
So, will a tube feeder’s equipment alert TSA to check my bag? Well, my four syringes look like dynamite sticks on a xray. The extra Mic-key button kit (insurance that nothing goes wrong w my system) looks like a boxed up bomb. Should I just open the kit and take out what I need? After all, most of the stuff in it is for bed ridden feeders. I hate tearing open a $350 kit to get the single peg button out, just in case. It contaminates the button and allows the little balloon device to dry out and possibly crack when it’s installed. I’ve already thrown away one of these devices after a long trip. It was just too dangerous to use it later.
Then there’s the 18” snap on feeding tube itself. That will look mighty suspicious to an alert agent. And the pipe cleaner I use to clean it with. Could that be fuse material?And when they unzip one side pouch, twenty packets of small and large rayon sponges will eject like somebody just broke a piñata.
And when they find all that incendiary looking stuff, they may do the full body search AGAIN. I’ve been through this when my doctor’s note failed to protect me from probing fingers. One of the female TSA inspectors choked up when she shared w me a story about frisking an eight year old tube feeder. She didn’t realize how painful tubes are when disturbed, and she frisked right over the inflamed area, setting off waves of pain in the little girl. Unfortunately for me, what triggered this story from her was her fellow agent frisking over my tube area. I don’t know if it was the wince of pain or the muffled yelp, but both agents knew they’d hit a bad place. Dear God, I hope I get lucky this time and don’t go through the full body frisk.
Back to packing. We’ve managed to stuff enough for two to survive five days, and if we don’t find a laundry in York, we’ll be turning our underwear inside out for the rest of the trip. (just kidding about the underwear). And we’d better find an apothecary or a grocery store where I can buy some Ensure. Taking my own food is just too cumbersome. But I will pack a few cans so I can top off the tank when we hit Toronto. Maybe doing w/out food a few days would be a good thing. I’m starting to look the M&M’s I love to snack on.
I am so excited about this trip. Wish me well. I’ll post all the pros and cons of overseas travel for the tube feeder when I return. International data fees by iphone are just too high to blog on the fly. Btw, I had to pay to turn my smart phone into a dumb phone for overseas use. I thought that kind of ironic. All it will do now is dial a number. Anything involving data has been turned off.

The Negative I Didn’t Foresee

Update to the Throat Stretching…

I should have caught a clue when the first throat stretching procedure jumped my throat opening from 4 to 10 and the second procedure jumped from 10 to 12 that the third procedure would not be the dramatic 18 to twenty I was looking for. The reality is: I went through this final procedure for nothing. Well, maybe not nothing, if you count the kindly letter I got from my doctor.
They did stretch my throat from 13 mm to 13.5. Hard to get excited about and hard to distinguish any difference in performance. Thank God for good insurance. Medicaire would never have paid all these bills.
Back to the letter. My doctor informed me, as gently as he could, that he was done, finished, outta here. What I’ve got is what I’ve got. Any further attempts to correct the problems could lead to serious complications because of the radiation scarring in my throat.
Meanwhile, being an optimist and expecting a miracle, I’d already bought non refundable tickets to England. So, friends and followers, I’m going to blog about London “by tube,” but I won’t be talking about the underground transportation system.
This is going to be challenging. Thank God I can probably drink Ensure or something similar and prevent all those embarrassing issues about how to feed myself w/out exposing my abdomen to the rest of the world. Evenings and in dark corners I can use the tube and syringe when I can no longer stand the taste of room temperature pseudo food. Warm Ensure tastes like carmelized fish.
And I’m going to blog about my adventures in nutrition and modesty so you can decide for yourself how easy or how difficult it is to travel “by tube.”
I’ll be posting pics and videos of everything. Stay with me and keep me in your prayers. If all goes badly, I won’t die of starvation; Jevity and my daily dose of vitamin m&m’s has helped me gain enough weight that I run no risk of malnutrition. Just the real possibility of fitting into some clothes I’ve outgrown recently. Cheerio, readers. I’m off to knock back a half pint, enjoy a little London theater, trek up to York, and maybe even take the boat for Calais, France for a few days. Leaving Sept. 15.

And Every Positive Produces a Negative…to the Third Power

After two procedures my throat opening has gone from a 4 to a 12, still 8mm smaller than a normal throat. But I am thrilled. Drinking water is easy; I can even gulp sometimes. And Saturday I had lunch at a little hole in the wall bakery in Eureka with a friend. Basil/tomato soup followed by raspberry lemon cookies.

At the same time, I was developing a rather fierce, rattling cough, reminiscent of late radiation days. I didn’t recognize it though, not until my mouth began to foam like a rabid dog’s and my throat was constantly itching, triggering that racking cough. Not a good thing for a person w an open wound in the abdomen.

At my husband’s insistence, I went to the walk-in clinic. “Say ah.” That’s all it took. One look. “You’ve got thrush.” Imagine a yeast infection to the third power, in your mouth. Oh @#$%. I’ve been there before with this. It’s the natural outcome of a weakened immunity when radiation has been close to the mouth.

Two years ago when I got this, they had to put me on diabetic food, which is priced in the stratosphere and treated me for a month on a medication highly damaging to the liver. So when my doctor suggested diflucan, I told him it wouldn’t work and talked him into the more powerful, liver damaging rx. But he also gave me the diflucan script and said, “Try it first.” So I did. Why stress an already compromised liver.

Voila. I’m cured. Two little pills and it’s over. And that’s my new positive from the negative. I am now ready for the third procedure. Will I get thrush again? Probably. And this time it really won’t respond to the simple cure. But each time they do the throat stretch, I get to eat a little more food than before.

So I’m dreaming of near normalcy again and shopping for plane tickets to London this fall. There I’m going to find some deep fried camembert smothered in apricot chutney and life is going to be so good. The negative will be my American Express bill.

Every Negative Produces a Positive and…

For some time, my feeding tube has not been my friend. The tube site has been extraordinarily painful, with twenty minute attacks of knife life pain that bring me to my knees, forcing me to walk w a cane, cutting short evenings w friends when it burned like a lit cigarette so that I dared not speak for fear I’d scream.

Out of compassion and concern, my family physician got the gastro doctor to bump my appointment up by two months. I had already waited over six months for this one appointment. Finally, I could whine and cry to someone who could maybe fix it.

My assurances to my gastro doctor that this was not a cancer and there was no need for a full endoscopy fell on deaf ears. He booked me for the procedure anyway. They gowned and gurneyed me, like a murderer readied for lethal injection and they put me down.

Only problem was, they couldn’t get the camera down my throat. The opening was only 4cm’s wide. That’s smaller than a green pea. No wonder I couldn’t swallow anything, not even a bite of my favorite food…an Arby’s cheddar and roast beef.

So my doctor sought my husband’s permission to stretch my throat. There is some risk of tearing and hospitalization. But I was unconscious, so the decision was made and processed w/out my knowledge.

And when I came too they brought me three packages of graham crackers and a cup of apple juice. I chewed and swallowed and savored the nutty sweet crunchy taste of the crackers and the tangy sweet apple juice like no patient ever has.

And since then I’ve had tiny pieces of pizza, part of an Arby’s roast beef sandwich, waffles, pancakes, fries, pineapple, strawberries, beer can chicken. And I’ve been promised that a repeat procedure would take my throat from its current 10 cm’s to 12, possibly 15 cm’s, still five short of normal, but enough to eat almost anything my challenged salivary glands can lubricate enough to swallow.

If you’re reading this and wondering, why don’t you drink lots of water to wash your food down, here’s the reason: food diluted with water doesn’t taste good. The first thing to wash down is the flavor and then you’re left with mouth full of tasteless mush that needs a second gulp to carry it away. Pretty soon your stomach is so full of water that you can’t eat any more and you leave the table with about an eighth of a cup of food in you and a gallon of water.

So, here I am with the promise of near normalcy and practicing each day by eating something by mouth. But remember my title; now I have my positive. The negative is still to come.

Will I Ever Be the Same

Will I Ever Be the Same Again?

Often, after my intense chemo and radiation therapy, I’ve looked in the mirror and not recognized myself. Because all my teeth were pulled before radiation as a precaution against necrosis, my jaw line isn’t MY jawline. Shrinkage of the gums and bones from radiation has puckered my lips. My cheeks were hollow, the cheek bones well defined but unflattering. My clothes dropped from a size10/12 to a 4. My pants often were held on with a belt. Frankly I’ve seen people who looked like me in Nazi war documentaries.
Being quite a vain person, I’d look in the mirror and think, this is not the package my new husband thought he was going to get. This is not even close to the person I used to look like. And there’s not anything I can do surgically to fix the way I look. I hated the post treatment me: a withered old woman, w sparse hair, gray skin, and hollow eyes.
Time, however, heals all wounds, or nearly all. If you compare the pictures, I am now three years older, yet I look so much healthier. I have a full and, for me, quite long mass of hair. The color has returned to my cheeks. I’ve gained twenty pounds (or more) even though I’m still a tube feeder. And a size ten may shortly be a memory.
The lines about my mouth are still there, and my eyes sometimes seem a bit hollow still. But, honestly, I can’t complain too much about the restoration job time and nature have done. Even though I’m on that slippery slope called old age, life for the most part is quite good.
And the point here is, intense radiation and chemo therapy will change your life permanently. But many of the negatives will diminish over time and the person you once were will emerge again. One morning you’ll look and mirror and say, “welcome back. It’s good to see you again.”

For Beautiful Claudine and Her Friend Amy

Sometimes I think keeping this blog alive is a waste of time. It doesn’t get much traffic or many comments. When I feel like letting the thing run its natural course, I have to remind myself that not many people are tube feeders. And most who are probably don’t have the energy or inclination to research the subject on the internet.

Once in awhile, however, I get feedback that encourages me to keep writing. The following is an email from an inquiry about traveling overseas with a feeding tube. I wanted to post this partly because to honor beautiful Claudine who passed away shortly after having her tube inserted. I also wanted to post it because it’s encouraging to me so maybe it will encourage other peg tube users to share their experiences. The more we know the easier it is for us to accept this challenge. Thank you, Amy, for the comments, the pics, and the encouragement. For advice on traveling with your pegtube, just scroll down a few posts. I have several entries that deal with travel issues.

Hi Dot,

I’m sorry I never got back with you. We did take the trip to Italy in July. See attached photo of Claudine and me in the square at the Pantheon waiting for our daily gelato. Claudine is on the left.

Her doctors decided to hold off on the feeding tube until after our trip. It turned out to be a good decision as she had some complications and spent three days in the hospital. Overall, the feeding tube was a blessing and made such a difference in her daily life. Unfortunately, we lost Claudine January 8th. We are still struggling with the loss. It may sound strange, but it came as a great shock because she was doing fairly well. I spent the night before with her and her husband. She cooked us a big meal (even though she couldn’t eat it) and even cut and colored my hair. Just 24 hours later I was in the hospital holding her hand as she took her last breath.

We were truly blessed with a fairly peaceful passing, but we are struggling as we thought we had more time with her. Still, we are thankful that she was taken before having to go through any more pain and suffering. All of which we knew were coming. She was an absolute blessing in our lives and has inspired me with all she accomplished in her short 35 years.

I thank you for all of your advice and concern and want you to know that it helped us both and was very much appreciated. You are doing a wonderful thing with your blog.

Thank you again for your kindness.

Amy

Here’s to You

When I do a referral check on my blog, I often see a search question about Ensure vs Jevity. Today’s postis that comparison some of you have searched for.
How do they compare in taste?
This is very personal. Ensure comes in a variety of flavors that try to mask the chemicals and pseudo foods in Ensure. They don’t do a very good job, but if you chill your Ensure down to nearly freezing, it’s semi palatable. I can actually drink it w/out triggering my gag reflex.
Jevity, unlike Ensure, is so rich and thick that if you can get past its weird taste, something akin to a carmel fish stick, you still have a heavy thickness to deal with. I tried to develop a taste for Jevity in hopes I could supplement my diet and have my tube removed.
I knew if I were to fly solo on solid food I’d either starve or spend all day at the dinner table because I can only swallow tiny crumbs of food. Neither starvation nor eating all day was a real choice. So I spent about a week cultivating a taste for Jevity. But it didn’t happen. In fact, on five cans a day, I lasted about three days before I began to wretch on the second swallow. Jevity just isn’t tasty. That’s the down side.
The up side is that I have not had a cold or the flu in three years of drinking Jevity. Something in Jevity is so balanced that I am immune to all the illnesses many fall prey to during and after chemotherapy.

As for the nutrients, here’s a side by side analysis of Jevity and Ensure.

Nutrient Jevity 1.5 Ensure
calories 355/350
fat 11.8/11
protein 15.1/13
carbohydrate 51.1/50
fiber 5.3/3
l-carnitine 36 mg/not listed
taurine 36 mg/not listed
vit a 24/25 rda
vit c 120/60 rda
vit d 95/25 rda
vit e 37/30 rda
vit k 24/25 rda
folic acid/folate 36/25
thiamin b1 36/25
riboflavin b2 36/25
b6 36/25
b12 37/25
niacin 36/25
choline 145 mg/15%
biotin 37/25
pantothenic acid 36/25
sodium 330/220
potassium 510 mg/500 mg
chloride 9/8
calcium 29/30
phospherous 29/30
magnesium 24/25
iodine 24/25
manganese 60/60
copper 24/25
zinc 36/25
iron 24/25
selenium 24/30
chromium 24/25
molybdenum 48/60

The chart is based on individual servings. It takes five and a half cans to meet your 100% daily requirement.
Which would I recommend? For taste, Ensure. For insurance, Jevity. If your doctor prescribes it, your insurance will pay for most, if not all, of your Jevity. Ensure? Not so sure. The nice thing about Ensure is that since it so closely matches Jevity, if you’re going to travel, you know Ensure is readily available wherever there’s a Walmart. Now you don’t have to lug those heavy cans of Jevity everywhere you go, or worry about running out before you get home.
Bon appetite? Hardly. Bon voyage? You bet.