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Total Laryngectomey

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Just wanted to check in. Had a total laryngectomy for the return of cancer on Nov 18. Was in hospital for a week and have been home now for a week. Eyesight acuity is shot; hard to focus on anything, even with large fonts. Using nasal-gastric tube. It takes all day for my wife and I to get thru all the medications and feedings etc.

I sleep a lot. Pain only on swallowing, pretting well controlled.

The amazing thing is that I feel good, at least during some part of the day. I enjoy getting an email out or reading your emails. Constipation is a major challenge; and I've just added prune joice to all the stuff I take.

I have a voice prosthesis, trachea-esiogigeak shunt in place put have not been OKed to use it yet. I communicate with wife with the help of WordPad.
Life had become trying to get the most out of every little thing. A bath brings great pleasure and just being tucked under the blankets, warm and cuddly is a blessing.

One day at a time. Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I can totally identify with you on this. After my radical surgery last year, the tracheostomy site was a very difficult part of recovery. I leaked air for over a month, and trying to sleep in bed was impossible, as it made me cough to lie down. So I slept sitting up in a chair with my neck snapping back and forth, for a long time. Even so, I don't sleep at all in the hospital, and it was so delicious just to be in my own place....

Be well. Better times are coming.

Pat

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Glad you are feeling good, even if it is just a little each day. On the Constipation try using MiraLax twice a day it really works well and taste OK.

MiraLax

Wishing you the best
Hondo

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I am making some headway against the constipation problem. I am using Prune Juice plus Senne laxitive plus stool softener. I started using the Prune Juice on advice from this board, and it provided the final little push to start clearing me up.

Luckily I can sleep in bed with my head elevated by two wedges and a couple of pillows. Thanks for all the encouragement. Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

not laughing at you. I get terribly constipated on pain medication. Knowing this, I had them start me on several products down my NG tube the day after surgery. I didn't back off until the day came I was on the toilet 11 times. Funny now, but I just didn't want the constipation problem.

I got outof the hospital without the NG tube. It was removed the day of my discharge. I could only swallow one small swallow at a time, and it was almost impossible to take in enough fluid to get by, maybe 800 cc the first 3 days. I just ground up all my meds and choked them down. Boy is aspirin bitter!

I remember one nurse lecturing me that if I'd use apple sauce instead of water, it wouldn't taste so bad. Problem was, I couldn't swallow apple sauce....

Like you, I did nothing but wound care for the first few weeks. I had a trache site, a donor graft site on my arm, neck and facial wounds, and a split thickness graft site on my leg. I also had a bushel basket full of wound care products. Dang the shower felt good.
I did all my own wound care, as I had nothing better to do for quite awhile.

It got easier pretty soon, but the first few weeks were pretty awesome.

I'd type this in a large font for you, but I don't know how to get it to do that:)

denistd's picture
denistd
Posts: 517
Joined: Apr 2009

Hi Rick, there is a site out of the UK called Laryngectomy life, it's out of Britain but there are people who have had laryngectomy's from all of the world, the moderator lives here in Myrtle Beach. They are a great bunch, it's not as formal as Web Whispers. Denis

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

I remember fighting with that Trach, I hated it, but they had a bad infection and my windpipe collapse. The thing would pop in and out, and it never work well, I demanded they take it out....After 5 Months, and half a larynx, i take it slow and don;t do anything that takes alot of breathinig, but I live as normal as iI can...the constipation wil get better when you diet returns to normal, sitting on the john trying to push out a movement, hurt like hell, sorry for the blutness, cancer is not a piece of cake, they claimed everything was chemo or rad, I'm at the tail end of recovery and still deal with issues of why this happened? The Doc wants to add the smaller trach back in, we will see in February, I'm sorry, but the Doctors can't seem to fix the broken parts of you, and always want to add more baggage to your body, in there eyes to make your life easier....and collect of teh insursance company, leave me alone. Thank you, Take care you will get better, it takes along time for some than others....Good Luck, Dennis...I would like some info of the Web Whisphers site or related issues close to m problem...TY!

denistd's picture
denistd
Posts: 517
Joined: Apr 2009

Just google web whispers, it's all there, try laryngectomy life, better than web whispers

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Rick,

I am glad the you are feeling good. Enjoy those cuddly blankets and in my opinion a nice warm bath is always a blessing. Keep improving every day.

Kathy

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

I'm with Pumakitty - a good, long soak in a warm bath is a wonderful thing. Like you, now that temperatures are falling where I live, every night I feel blessed when I snuggle under my covers. I'm hoping you continue to heal well, and can soon see, eat and speak well.

denistd's picture
denistd
Posts: 517
Joined: Apr 2009

I would be very wary about the bathtub, you have a hole in your neck that goes directly into your lungs, should you slip, fall or lie down too far in the tub, your lungs will fill with water, go to LL you will find out how all of the others take a bath or shower.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Rick, I knew you were scheduled and am glad to see you post. I got a kick out of LongTerm's pro-active approach to constipation relief. I have the same problem, especially with morphine. I’ve thought that the next time I have to go in for anything, I’m going to do the same, start loading up with fiber, softener, etc., before, during, and after.

I’m happy to hear it’s not bad for you all day. Yeah, when you are healing at your level, getting comfortable is a big reward.

Keep moving forward, finding ways to stay relaxed and heal at the same time.

Good luck! Hal

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

The good news is that I am improving slowly. I am on a liquid diet, but that beets the nasal-gastric tube. I can use the voice prosthesis, and actually navigated a phone tree. I was amazed myself. There is still a lot of mucus and coughing fits.

I will look at and certainly join laryngetomy life. Thanks for the advice. I don't get back to these boards as often as I should.

Unfortunately, there has been some bad news. They did not get all of the tumor and radiation is being recommended. I am almost certain that I will take that recommendation. So I get to subject my body to one more ordeal.

Thank you for all your advice and kind words, Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

I am sorry to hear this. Sometimes I have felt like, after climbing every mountain set in front of me, I've crested the summit to just find more mountains to climb. Then I knuckle down and keep climbing.

Sounds like you and I have similar trajectories at the moment. My starting date on re-irradiation is Jan 9, so maybe my planning is a little ahead at the moment. It helps just having a plan.

Wishing you the best.

Pat

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I am Sorry to hear this but You can do it like I did my friend; I am now a little over 6 years passed my second treatment.

Wishing you all the best
Hondo

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Are with you Rick...you can beat this!

My thoughts and prayers are with you, hoping to help in keeping your spirits boosted and your fighting energy strong.

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Stay strong Rick. We'll be thinking of you.

Dawn

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Well, time for an update! Past due for an update!

I know most of you know this but a few may not: A tracheostomy is a temporary hole in the neck to assist breathing. A laryngectomy (which I had) is permanent. So I will always be a neck breather.

The voice prosthesis worked for a couple of months, when got plugged. I've elected to leave it plugged for the time being, and learn esophageal speech. In esophageal speech, the patient swallows air and burps to speak. The air is swallowed only into the esophagus and not the stomach. I am acceptable with short phrases, but cannot carry on an extended conversation.

Mucous, phlegm, and coughing are my big complaints. The docs started me on a codeine and expectorant mixture which helps the cough but knocks me out. The codeine also causes excessive constipation.

I am awaiting my first post-treatment PET.

I am still happy at least for part of most days. Mostly pain free. The esophagus is shrunk, so I must chew THOROUGHLY. And food gets stuck about once a week. But I can easily cough it up. And since my airway is not connected to my mouth, there is no chance for suffocation.

I think for my next update, I will start a new thread. Rick.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I've seen some of your more recent commments in the last few months...and now this one. I know I am a newbie (7 months post treatment for base of tongue) ..but I just have to say I am amazed at what you have been through and how you handle(d) it...just amazed.

I look at you and Pat (longtermsurvivor), Hondo (Tim) and many others on here and I just don't know how you guys did it / do it on a daily basis...but it makes me check my bad days at the curb and realize if ever needed maybe I can get through anything that comes my way.

Anyway..I thank you and those mentioned above and many others (like John, a.k.a. Skiffin) who come back and post your experiences and knowledge for us newbies.

Best,

Tim

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