hi, I want to introduce myself, I am debbiejeanne and I survived laryengal cancer stage 3. I had 35 rad trmnts in 8/09. then the cancer returned in 2/12. was told couldn't have more rad and chemo would only shrink it but not kill it so I had to have a complete laryengectomy. it's not easy living with a laryengectomy. it has daily hassles which drive me nuts. i'm thankful to be alive tho so the hassles are doable. i'm wondering if there is anyone here who has also had a laryengecgomy. i'd like to know how you deal with it on a daily basis. any info will be greatly appreciated.

Hi debiejeanne, my husband Kris had a laryngectomy in March 2012.
Feel free to PM me with any specific questions you have. Or you can ask here and I will share our experience with you and try to answer any questions you have. How do you communicate? Do you have a TEP valve?
There is also a lot of information on www.webwhispers.org.
Take care,
Tammy

debbie, welcome to OCF. Yes there are a few members who have had this procedure. I imagine its not easy living in your condition. But try your best to think of all the positives in your life. Best thing is you are still here. Its a difficult thing to adapt to the new normal when its a drastic change from the person you were pre-cancer.

Oral cancer caused me to become disfigured, I am missing half of my lower jaw and lost all of my teeth. I know Im very lucky to be alive and spend my time helping others. By helping other oral cancer patients it helps me to be productive and to give back.

I ave a few friends who use webwhisperers. From what they have told me its a good organization with several hundred members.

Best wishes!

hi debbie, like you i am a new "larry" had mine 22nd november. i had a sore throat in may and ignored it.
i am waiting for a tep valve to be fitted so i comunicate with a speech aid at the moment, which can be rustrating if there is background noise.

once i have my valve i will go back to work as my employer will create a job that i can do (very good firm) my biggest problem is my stamina, my hearts willing but my body's not. i soon know and suffer if i try to do to much.

i have got a portable nebulisa i can use that will help me when i do go back to work.

biggest and most annoying thing i have Found since becoming a larry is other people....I CANT SPEAK BUT I AM NOT DEAF,,,,,,STOPPPPP SHOUTING AT ME.

since my operation i have calmed down a lot. i dont get as stressed as i used to with other people and what they do.i have even stopped getting stressed at other drivers....lol

i finished my radiotheraphy a month ago and am able to do most things now, just not as quickly as i used to though. i've been driving since a week after coming out of hospital as my surgeon said as long as i have full neck movement it will fine.

thank you for replying. I don't know how to send a pm. yes I have a voice prostethises. does your husband still have a lot of phlem? does he use his suction machine a lot? does he have trouble when he tries to talk, like nothing comes out?

Debbie - Here's how to send a PM (private message): Just look at the name to the left of the message. Click on it and a drop down link will appear and you can choose the one that says "Send a PM". So scroll up this page to Tammy's message and click to the left box where it says "tamvonk" and click and voil� you can choose "Send a PM" to her. When she replies and you open up the OCF support forum, there will be a little flashing indicator at the top of this page telling you that you have a message.

thank you for the info.

[size:17pt][/size]Christine, i'm so sorry you've had so much trouble. thank u for sharing ur story with me. I will pray for you to be and stay cancer free. cancer is no picnic for sure but at least we do survive. i'm like you I am thankful to be here. God bless,
debbiejeanne

dave, i'm glad you stress less....lol. especially the drivers, that's hard not to stress over...lol. i'm glad your company will create a position for you, that is really very good of them. not too many companies would do that, mine wouldn't. I have some questions for you about the lary. do you still have phlem and have to use the suction machine a lot? it was a year ago 2/28/13 since I got my lary and I still have a lot of phlem and have to use the suction machine quite a bit. like every 10-15 minutes. my tube also gets clogged up with gunk. I usually stay home all day everyday b/c I don't want to take the machine with me if I go somewhere. it has been over a year since my surgery and i'm just now starting to drive again. I've really missed it. my neck is still a little stiff but I can move it enuf to drive. well, thank you for replying and I will keep you in my prayers.
God bless,
debbiejeanne

Hi, I have sent you a PM.
Do you use a nebulizer at all. I would recommend this to you to help loosen the phlegm and make it easy to cough up.
As we live on a fairly narrow island surrounded by water the humidity is high here which also is very important. I know many larys in the US use a humidifier in the home to maintain humidity around 55%.
Yes, there are occasions when Kris is unable to make any sound. Usually this means that the speaking valve is blocked and needs to be cleaned. We clean the valve twice a day at least to keep it clear.
I think that if you are able to keep your phlegm thinner by using a humidifier and nebulizing saline regularly , you will find that you can cough/clear the secretions yourself and will no longer need to suction them out. It is also very important to drink plenty of fluids each day as this too helps to keep the phlegm/mucous thin.
I hope all this helps and you can soon leave the suction machine at home / leave the house without it
Tammy

I don't have a nebulizer but the phlem comes up my stoma not my throat. that's why I have to suction it. thank you so much for replying and sending the pm. I really appreciate your kindness.
God bless,
debbiejeanne

Yes debiejeanne, I realise the phlegm comes up from your stoma. It comes from your lungs and then out the stoma. In your old life when everything was connected normally, your nose did a great job at moistening and warming the air you breathe. Now that your airway is no longer connected to the nose and throat, you are breathing in colder and much drier air. This is why you have to add moisture. The cold dry air dries out the secretions in your lungs making it thick and difficult to cough out. That's why larys need a humidifier and to nebulizer saline down the stoma. This keeps it moist. Do you wear a cover of any sort over your stoma?I really recommend you read the webwhispers site to help you understand and care for your stoma and lungs. There are many different sorts of covers available in the US to protect the airway and maintain the lungs in as healthy a condition as possible.
Tammy

Hi debbie
yes i still have phlem but it is not too big a problem for me. i use a nebulisa a few times a day and that keeps the stoma clear, plus i have a very good cough. my cough is that good it impressed all the medical staff. this is despite the fact i was a very heavy smoker for 43 years prior to my cancer. i have not had to use the suction since 2 weeks after my operation and i didnt use it to much then either, as i said my cough helps me it sounds terrible though when i am coughing

in the uk when you are discharged from hospital as a larry they look after you very well. i have a mains nebulisa on a years loan that is very good. i also got my speech aid on loan, plus a bag of goodies from the company that provide all the larry supplies i need. the goodie bag included a mirror on a stand a mini torch to shine down the stoma and pair of long nose forceps to get any stubourn bits of phlem out.....sounds grousome but it works very well for me. i was very loath to use them when i first came out. now it is not a problem, i reckon i nearly put them the full 3" into my stoma. it's a great sense of satisfaction when you clear a really stubourn piece as well i'm sure other larry's can relate to this

i have a portable nebulisa i bought a month ago and its the best thing since sliced bread i would reccomend it to anyone, it has given me my independance and allowed me to get out and about. i know tammy has bought one for her husband as well and finds it usful..(hi Tammy)

in the uk our NHS is free, well not free as i have paid national insuranse contributions into it all my working life. we do have the advantage of piece of mind in knowing that any treatment needed will not be refused because we cant pay. as a cancer patient you also qualify for free prescriptions as well. i had to pay over �7 for every precription before the cancer.if i needed more than 1 item it got exspensive.

as tammy said if you havnt got a nebulisa get one asap as the suction alone is not really clearing the stoma in my opinion. a nebulisa and a good cough does great things for me.

i have noticed i need to take out shares in paper tissue companies now. i go through loads

i hope you can get your phlem problem sorted out as that seem to be quite a lot of suction you still need a year after your operation. i have learnt that every operation is different though and we all react differently to the treatment

having cancer has also shown me who my true friends are as well. the support i have had off them, family and work has really helped my recovery

tammy, thank you for the info. my docs have never mentioned a nebulizer to me. I use hme's to cover my stoma. they go in my lary tube or the stickie I use to talk with. do u know if insurance covers the nebulizer? what about the humidifier? I am on a fixed income and there's not a lot of money left over after paying the bills. if it helps me be mobile again I guess it's worth it. thanks again for the info. I will definitely ck into the nebulizer and humidifier.
God bless,
debbiejeanne

thank you so much for all the info. I, too, smoked for 43 years but my lungs feel clear. I guess that's where the phlem is coming from tho. I will definitely try the nebulizer also plan to read on webwhispers about the stoma. I just joined this site and have learned so much already. the people on here are very helpful. thank you again for sharing your info.
God bless,
debbiejeanne

Wish I could help you further, but I live in New Zealand so do not know how the health system and insurance works in the US.
There is also an International Association of Laryngectomees - IAL. If you google them they should come up. I think that you are able to contact them and they will provide assistance.
Using the HME filter is a very good idea for both filtering the air you breathe and helping to moisturise..
Really hope your quality of life will improve - I'm sure of it.
Tammy

Christine, thank you for replying. you've been put thru hell and i'm truly sorry for that. I didn't mean to sound ungrateful b/c I am thankful to be alive. it's just hard sometimes. although after reading about you it makes my recovery seem like a piece of cake. it's great that you remain so positive and want to give back. I admire people like you. I did sign up to be part of webwhispers.org. I plan to do some reading on that site as well. I also plan to get a nebulizer like tammy recommended. if I can stop needing the suction machine so much, i'll feel a lot better and a lot more free. right now I feel confined to the house.
Thank you again for the info. I truly appreciate it.
God bless you,
debbiejeanne