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I would like to chat with other Laryngectomy's ....... * not many of us out there *

Silver_Foxette's picture
Silver_Foxette
Posts: 137
Joined: May 2010

Most times I feel so alone and have no one to talk to about being a total Laryngectomy .It would be nice to meet someone with same .I had vocalcord cancer and this June 9 will be my 1 yr surgery date .I have alot of anxiety attaches , which keep me homebound .I am single and use to be fairly active ...So if your out there and want to chat ,I'm a great computer chatter and I'm on Facebook as well. God bless all .....prayers going out and up for all ! Name is: Roxanne ~*~ Ps. 91:11

denistd's picture
denistd
Posts: 494
Joined: Apr 2009

Hi Roxanne, I did not have a laryngectomy but came close, in April of 2009 I was diagnosed with vocal cord cancer, stage 3, the doctors suggested 35 rad sessions and 3 cisplatin chemo rounds, so far it has worked. There are a couple of places you can go to. I hooked up and kept a blog on Laryngectomy Life, great people from all over the world there most lary's and some carers. There is also web whispers, lots of info and cross chat, it's not so intimate as LL but is good, I am sure there is a lary group close to where you live. Hook up with the two groups and they will get you to the right places. Denis

srshults
Posts: 3
Joined: May 2010

Hi Roxanne my name is Steve and I had a total laryngectomy June 5 2009. I know how it fells to be all alone because of the cancer but we are not. There is a web site called webwhisper with a lot of information and topic that can help us, also I don't know which state you are in but check with local cancer society there might be a group that meets call The International Association of Larygectomees. This is a good group Here in Arkansas they meet last Friday and it was my first time to attend and I think it really helped out a lot. and you could always e-mail me and we can be friends and try and help each other, there is lot of Larys out there we need to stick together. Fell free to contact me.

Steve

debbiejeanne's picture
debbiejeanne
Posts: 2393
Joined: Jan 2010

Roxanne, you should come here any time you feel alone. I felt the same way because the people who love us are concerned and worry about us but they can't imagine how we feel actually going thru cancer and its battle. I also felt completely alone until I found this site thru a friend who went thru breat cancer. I had cancer on my voice box. Went thru 7 weeks of radiation, the last one being 10/22/09. I still have some problems with swallowing and my throat is still very swelled but overall, I'm doing ok. Most foods do not taste right so I don't have a big variety of foods to eat b/c of the taste buds being messed up. The worst part was quitting smoking. I still miss it. I have smoked for 40 years so that was a big part of my everyday life. I pray that God will help me fight the urge to smoke everyday.
You will find there are many, many good people on here who are very willing to be your friend. They also have a lot of great info. So, come here often and you will find that your aren't as alone as you may thing. Hang in there and stay positive.
You will be in my prayers.
God Bless,
Debbie

Isanyati Dakota
Posts: 2
Joined: Jun 2010

Greetings Debbiejean,

I read your reply to "Roxanne, you should come." By the Powers that Be, I felt as if I had written your note. I finished my radiation treatment last week. Food tastes terrible, I feel as though I have a large wad of cotton stuck deep in my throat. Often I feel saliva going the wrong way and have no choice but to break into a really breath-taking coughing spell and blah, blah, blah. I have a multitude of emotions and feelings. I served with the Army Rangers and Special Forces; and I took my diagnosis (Type 2) as a personal insult. I'm over that now. I realize I'm no longer young and indestructible. Remember the superballs that you could drop from waist height and they would bounce really high? That's what I feel like most of the time. Sometimes I'm up and other times down; I get really angry and resentful inside. My wife, TexasCat, found this site for me. She has been a real pillar of support. I, also need to quit smoking. What bothers me is the exercises the folks in Speech Therapy want me to do. Thank you for allowing me (like you had a choice) to regurgitate these words all over you. Sorry for my ranting. Isanyati Dakota indicates the Sioux tribe I'm from (Randy or Wolf as a user-name was already taken).

debbiejeanne's picture
debbiejeanne
Posts: 2393
Joined: Jan 2010

Isanyati Dakota, I am sorry you are going thru this but I'm glad you are here and reading/posting. Congratualtions on finishing the trmnts, now comes the recovery. I hate to break it to you but I'm 8 months post trmnts and i still get the dry mouth/throat and feel like I have a cotton ball in my mouth. It isn't all day or everyday like it used to be but when it goes dry, it is just as dry as it was right after trmnts. About the ball, I'm still that emotional today, yuck!! I have to admit tho that is is NOT all from the cancer. One MINUTE I'm laughing but the very NEXT, I'm BALLING like a baby. As you said about your wife, I could not have faught the battle w/o the support and help of my other half. He was absolutely wonderful and always right by my side. He was AWESOME! He even cried w/me a couple times. I can't say even one bad word against the way he took care of me, but with that said, even he couldn't understand the full effect of what cancer and treatments and now recovery is doing to me. Not because he chooses not too but b/c he hasn't been there, thank God! I never had to go thru speech therapy, it was never even suggested. What type of exercises do you have to do? You never have to apologize for ranting, we've all done it!! Just one more good thing about this site and the people here, we all allow ranting...lol. I love your name and what it stands for!! That is really cool ! I wish you the very best with the cigarettes, I know it was really hard for me. I was hypnotized which worked and I had quit with no problem for 7 months, then I lost a nephew who was like my own son and I started smoking again. I have since quit again, finally. I haven't smoked now since 6/3/10. I know that isn't a long time but it's the best I've been able to do since I started again. It is hard but truly, if I can quit, I know ANYONE can.
I wish you the very best and hope your recovery goes smoothly. I also hope to see more posts from you. Thank you for your reply.
God bless you friend,
debbie

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Can you tell me Me if The Thick it Solution, cuts back on the phlem, and when can you tell any difference. Thanks Dennis in Tennessee

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

There is a group called the new voice club for laryngectomees. They have groups around the country so depending on where you live you might actually be near a chapter where you can actually meet some in real life. Some might even go to different SPOHNC chapter support groups yet another possible way to meet others that are going through what you are experiencing.

debbiejeanne's picture
debbiejeanne
Posts: 2393
Joined: Jan 2010

Graci, I'm so sorry to hear of your loss. I'm equally as sorry to hear that you now have cancer. You're right, it is a hard battel to fight, but one you can win. You are definitely in my prayers. Please keep us posted as to how you are doing.
God Bless and take care,
Debbie

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

I am NPC but very glad to have you are here with us all, please continue to stay and post.

God bless and be with you

DrIBrook
Posts: 2
Joined: Jun 2010

I am a physicisn and also a laryngectomee and would very much recommend that you log to http://www.webwhispers.org/ and get on their dailt email posting and Forum Chat room.
You can check my Blog site for materials that I published on this topic that may be of help to you. This enclude several articles and a book about my personal experiences with throat cancer and speaking again.
see at:
http://dribrook.blogspot.com/

denistd's picture
denistd
Posts: 494
Joined: Apr 2009

Hey SR did I see you on LL?

lilypeep
Posts: 1
Joined: Jun 2011

Hi my name is Dawn. My mother had a total laryngectomy this past December and she has been searching for someone else who had a laryngectomy to talk to about it. It sounds like she is going through the same feelings you are. If youre interested please email me at lilypeep@yahoo.com or you can also search for me on facebook with this email.
Thank you Roxanne!

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

Welcome to CSN glad you found us. Your reply was to an old post from back in 2010, just start a new post with your question and there will be a lot who will respond to your question.

All the best to you
Hondo

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I sent you a private message (CSN Email), giving you Roxanne's email address. You can also feel free to friend her on Facebook (Roxanne Jacobs in Ft. Wayne, IN - her current FB pic is of two ladies in blue jean capris poolside).

bigeyes116
Posts: 1
Joined: Nov 2010

Hi Roxanne, I'm responding because I had a total laryngectomy (May 2010). I joined a group called "Nu Voices" everyone in the group has had a total laryngectomy. We meet once a month, my first time attending the "Nu Voice" was February 2011, and now I look forwards to attending these meetings. I'm usually the only women attending (besides a female speech therapist). They say mostly men have laryngectomys. But like I said I look forwards to the meetings and everybody is so kind and helpful. I'm like the new kid on the block but I love the meetings. What state do you live in? Perhaps where you live have "Nu Voice" meetings. Contact "American Cancer Society" and they will help find the "Nu Voices" that are near you. If you have any questions or concerns, feel free to email me back and I will try and help. The president of the "Nu Voice" here in Riverside, Ca is "Don Layton" I'll refer you to him if you ask something I have no knowledge of.

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