Hi all of you,

I just wanted to present myself here. I am a 23 year old girl from Holland, named Jaqueline. I do not knwo the specific english words for my deseases but let me try to explain. I had cancer of my tongue a few years back and had a partial glossectomy. This seemed to be the right thing back then, but about 1,5 year ago the cancer returned...big time...
And this tim also further back in my thongue. What followed was a radical glossectomy, but preserved my larynx at first, because they thought that a young woman lik me could handle teh problems of not beiing able to swallow... But off course, as you can guess, I could not. So not later then a month afterward they also did a laryngectomy on me. At first I found it devastating...Now I even was not able to produce sounds at all... And breathing threw a whole in the neck is not really what a girl in her late teens wish to have wenn starting to develope... (especially since that is not my only handicap, but starting about this subject is probably off topic here)
Now, almoast 2 years later I did sorten out my life and I have started a relationship. My partner exepts me for who I am and is very supportive. We communicate threw signlanguage.
I only mis one thing and that is exchanging info with other glossy/larry patients like me. And don't get me wrong, but I would apreciate reactions especially from younger girls or boys, cuase as it looks like, I am the only youngster with both these problems...Only heard of people who are older then me having this "problem", but off cours they are welcome to echgange info with me to...
many thanx Jaqueline

Hello Jaqueline

I am much older than you but I want to welcome you. I am sad that a young woman of 23 can be so affected by oral cancer. You are very positive and courageous and I send good wishes for a healthy 2005.

Love from Helen

Hallo Jaqueline,

Onthaal aan OCF. Ik ben droevig dat u dit dier van een ziekte hebt moeten vechten, vooral op uw jonge tijd.

I hope that the above is the right translation for the following.

Welcome to OCF. I am sorry that you have had to battle this beast of a disease, especially at your young age.

I am not quite the same age as you but I hope you can find the information and sisterhood/brotherhood that you are looking for. I admire your strength and bravery and am really happy that you have found someone who loves the real YOU. Again, Welcome and I am sorry if I got the translation wrong.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Welcome! You sound like a very determined person! My kind of people! Are you still unable to swallow or do you have a peg tube? Your friend, Erik

Hi Jaquelle,

I think I am the only total laryngectomy that currently posts to this board. I am totally sorry you have to face this at so young an age but it is a liveable condition and beats the alterative.
If you think having a hole in your neck needs to limit your wardrobe or options, have Danny Boy mail you a picture of me from the gathering or my sister's wedding. Two cancers, radiation, two neck dissections, total larygectomy, and I can still wear a dress with shoestring straps. Don't let this limit your life. Think positive.

I am more than willing to correspond with you on the particular problems that occur with us laryngectomees. If you wish to do this, please email me at [email protected] rather than using the private message board on the forum. You will get a response much sooner.

Do you have an indwelling TEP? What do you use to speak? My surgery was 3 years ago and I have an indwellin TEP.

I look fforward to be aable to help you in any way I can. Just email me.

Take care,
Eileen

Jaqueline,

I am truly sorry you have had to endure this disease. Your courage, strength and spirit are really awesome and I hope you find exactly what you are looking for as you join the neighborhood.

Ed

Jack, I had to clean my glasses when I read the first line of your post...

Hi there, thanx fo the warm welcome and I even got some pretty good Dutch language as a welcome...I enjoyed that.

Eileen: About using TEP, speach and stuff. I don't, well at least not with sounds. The only way to communicate is by sign language or digital speech wich is nothing more then typing and a computervoice comes from a computer... this is because I can get a litlle air to my stomach threw my mouth and push it out to make a voice, but without a thong I really can't make any descent words.

and to erik: I still can't swallow, cause of the complete abcents of my tongue. I tried some liquids by letting it flow in to my foodpipe (sorry couldn't come up with the right english word), but even that is difficult. Maybe it will come in the future, cause I am still learning. In the meantime I used different forms of getting a meal into my body. I used a type wich got the right nutricians and stuff threw an IV into my bloodstream, but I have also used tube wich went into my stomach.
Maybe that is one of the hardest things to accept for me, cause I liked going out to dinner a lot... but the positive way to look at it is that I don't have much trouble now for keeping my figure

Jaqueline

Jaqueline, I read your first post and didn't answer right away....Your attitude is so positive! Please talk to us (your extended computer family)

Jaqueline
Please keep maiing us, you are doing so well, and yes the tube (here called a PEG) in your stomach, which a lot of us have had is very good for the figure, but gets stuck in your clothes. I only could not talk for two weeks and it's hard work, so I so wish you well for that..Sorry i don't know any Dutch but you are in my prayers
Sunshine... love and hugs
Helen

Jaqueline,

I had a different type of PEG tube put in called a "button" or a "MIC key". It only extended about an inch and had two types of extension tubes to put on, one for feeding and one for pure liquids like water or medicine. It also had a valve that prevented the tube from flowing the wrong way and eliminated some of the not so pleasant oozing on my clothes. The button was much easier to ride the bike and excercise since it was out of the way all the time.

You are in my thoughts and I truly admire you.

Ed