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Your Cancer Game Plan

Pro Football Hall of Famer Jim Kelly is sharing his personal experience as part of “Your Cancer Game Plan.” This new awareness campaign focuses on tackling the emotional, nutritional and communication needs of those facing cancer. To help address these challenges the campaign aims to provide support and resources, including Kelly’s video on how to remain positive along with healthy recipes for those with head and neck cancer.  Jim’s hope in sharing his experience is to inspire others to act and know their game plan.

Your Cancer Game Plan is a collaboration between U.S. and International industry and patient advocacy groups. Click here for further information.



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My Belly Has Two Buttons

meikeleBy Meikele Lee, author of the children’s book “My Belly has Two Buttons” and lives in Helena, Mt.  She is a wife and mother to 3 amazing children, one of whom has a feeding tube.  She has been in cosmetology for over 10 years, but became passionate about blogging when her youngest child’s oral aversions became life threatening.  She used blogging to try and understand her son’s condition and how he can relate to others with or without a feeding tube, and to help educate the public about these life saving devices. continue reading →



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A Moveable Feast

004-1It’s hard to know which events inform our reality and which only mark the passing of time.

Waking up in the hospital with a brand new feeding tube on board was clearly one of the former.

But there I was.

I had resisted repeated proposals from medical professionals to have a g-tube inserted. They warned of the worsening dysphagia I faced due to the effects of radiation for throat cancer I’d had years earlier.

Finally, home alone for a week – my wife visiting family in Florida – I faced a crisis. My esophagus closed down for business altogether. I couldn’t swallow anything, and by day 4, I had lost about 15 pounds and was terribly weak. So it was off to the ER, and then the OR, for the g-tube.

As I worked my way through the post-op haze, a well-meaning speech therapist visited and informed me that I was lucky indeed. Now, she said, I could get all my nutrition through this feeding tube. The product to be consumed, something like Ensure, would be delivered to my door, and I probably wouldn’t even have to pay for it!

Wow, I thought. Even with the dysphagia, I had looked forward to meals in restaurants, family dinners at home, milkshakes, ice cream.   Now, all of this would be accomplished through a tube they’d installed in my stomach.

A moveable feast indeed!

For the next few days in the hospital, I was fed by the “gravity method,” with the nurses doing the work.   When I got home, like most of us, I undertook “bolus feeding” (also known as gravity syringe feeding, the most common home feeding technique), with some trepidation. But I proceeded with an enormous sense of discipline in each and every step, and with lots of assistance from my wife.

Also, like most of us, I gradually started to handle the protocol myself, becoming quite adept at bolus feeding, incorporating it more smoothly into my daily life.

As I saw it, I had two choices. Either sit around and feel sorry for myself or embrace this and get on with it.

I have a wife, two grown children, four grandchildren, and a cat – all of whom from time to time count on me for something. And I have a fairly busy law practice to maintain.

I had no choice but to embrace this new situation.

The first challenge was at my health club where I worried about the appearance of my noticeable apparatus as I showered and dressed with my friends. For a while I tried to partially mask the stoma and the apparatus using various vapor barriers, finally trying some industrial-strength Saran wrap.

Then I threw caution (and the Saran wrap) to the wind. Now I wear the apparatus quite nonchalantly. I think it looks good in the shower, and I frequently sit at the table in our lounge area to ingest a can or two of Jevity when I have an afternoon off.

Next, people kept asking me to meet them for lunch, or for coffee, which meant going to a café or restaurant. Both personally and professionally, I had a strong inclination to continue to engage in these activities.

Shortly after deciding I would have to get on with things, I designed a stick figure man – a happy fellow with his g-tube and a can of Jevity attached.

I used the stick figure to sign notes to everybody around the house. I liked it and it became my signature. I named it Tubenmann, German for “tube man”.

Inspired, I took a Polo-type sweatshirt of mine to a seamstress in town and had her embroider my stick man as a logo on the front of it. I also had her insert a zipper on the shirt, over the spot where my tube is.   This shirt design, I thought, would help me to once again fit in at cafes and restaurants by allowing me to access my Jevity or even coffee – right there – without calling undue attention to myself.

And so I did.

My first venture with my newly configured shirt was at a coffee shop here in Walnut Creek where I met an old friend from San Francisco.

tom

We chose a table by the window, acquired our beverages, and I surreptitiously inserted a syringe into the feeding tube, which I’d accessed through the zipper on the front of my shirt. Then, just holding the syringe there in front of me, I was able to enjoy my coffee, calling little or no attention at all to myself.

This was an altogether fine experience, one I have repeated often since.

I wore the shirt on visits to my speech therapist, the talented Amy Lesico. And I wore it on visits to U.C. Davis professor, Dr. Peter Belafsky, as well as to my local doctors, Sam Sundar and David Lin. Together with their staffs, they unanimously applauded my shirt, calling it very cool.

Their clearly honest and heartwarming enthusiasm came as a complete surprise to me.

It seemed that something I had put together to mostly to entertain myself and in some way facilitate socializing for me had taken on a life of its own.

They are met with amusement, interest, enthusiasm, or most often, the garment is completely ignored as I go about my business wherever I happen to be.

I was fortunate enough to discuss all this with Ed Steger at NFOSD, and he suggested this article. So here it is. A brief account of how I, just one person, am dealing with the g-tube which I understand I will have for quite a long time.

tubenmann-t-shirt

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I did not stop just with a few shirts for myself. I have gone on to make available a men’s and a women’s long sleeve polo shirt fitted with my useful modification. Visit www.tubenmann.com to see for yourselves and for ordering.

But remember:

“It’s not just the shirt, it’s the attitude.”

Tom Dawson, Tubenmann

 



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A Newfound Meaning to Life

Byline: Steve Clark from Camp Verde, AZ

In the years since I was first diagnosed with head and neck cancer I have come to one realization. There is no such thing as a “typical” case. So many delicate and complex systems pass through that part of the anatomy that every survivor tells a different story. This is mine. Glean from it what you will. I hope that it may be of help to someone. continue reading →



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I Love You Even If This Is Forever

Three years ago this month, Julia Tuchman wrote one of our most read patient stories titled “The Hunger Games.” She has gone on to publish an updated story in Elephant Journal that has received over 20,000 views since its publications in May 2016. Julia is an active member of the National Foundation of Swallowing Disorders and an inspiring advocate for dysphagia awareness. At the end of her article, the NFOSD Swallow Documentary has been included to allow those not familiar with swallowing disorders to gain perspective into the lives of those living with dysphagia.

Link to Article: http://www.elephantjournal.com/2016/05/i-love-you-even-if-this-is-forever-a-tale-of-chronic-illness-and-chronic-longing/