An Update
I haven't updated for a while. (At least I don't think I have) Coming up on 4 months since my laryngectomee. I have been back at work - in the office - for 6 weeks now. I am only working about 20 hours a week - I can't seem to get more than that, as it is really draining me. I am working Monday, Tuesday, and Thursday. Recovering (and some playing) the rest of the time. Fortunately, my company has disability insurance, and it allows me to work up to 80% and still get some compensation. I get a physical tomorrow, and maybe we can find out what is going on - or if this is as good as it gets. (I know majors surgeries can take a toll - and the extra days of sedation can as well).
I had my feeding tube removed in March - but it is still leaking. I had hoped I wouldn't have to see the GI doctor again - but on Friday I'll have another endoscopy, he'll clean out the tube track, and then clamp or staple it shut. I'm ready for it - what I am tired of most is the the tape to hold the gause in place - I think I'm sensitive to all types of tape - either that - using it almost every day for the last 7 months...
Swallowing is going well - I can eat anything I want - but my tastes have changed. That surprised me because I didn't have chemo or radiation this time. I cannot stand chocolate anymore (good for the waastline). I do need to watch how much I eat though - And as Bill told me - always put my shoes on before I eat. If i bend down or cough too hard - it all comes right back up.
I can swallow big pills now. So much easier swallowing a pill than crushing them and mixing w/ water and drinking. I have to take 6 huge calcium pills a day.
I am babysitting my 2 year old grandaughter some again. Not as much as before - because it does tire me out - She is a bit afraid of my new (electrolarynx) voice - I don't want to be with her by myself yet - until she can understand me.
That's about it. Allive and (getting) well.
Comments
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lornal, i completely
lornal, i completely understand. it is not an easy road recovering from and living after a laryngectomy. i was out of it for about 1.5 years after the surgery. I mean, literally, I cannot remember anything for about 1.5 yrs. i think it will get better but it needs more time. that was a major surgery and your body is still trying to recover. i'm sorry the tube is still leaking and requires more attention. i was lucky, i had no problems with mine. in fact mine fell out a couple times and the 2nd time they couldn't get it back in so they just left it out. you may very well be allergic to the tape, many people are. i use tape on my neck everyday to tape down the strings attached to my prosthesis, some tape bothers me and others don't. there are several types out there, maybe a different one won't bother you. hopefully you won't need the tape much longer. its awesome that you can swallow big pills!! i have to cut everyone in half and even then they get stuck sometimes. i still have trouble eating too. have to chew, chew, chew and chew my food to get it to go down. i'm always the last one to finish a meal. when we eat out, i always take some home because i don't want everyone waiting for me to finish. keeping a 2 yr old tires anyone out but especially people who are recovering like you. i have a 3 yr old grandson and i can barely keep up with him for a couple hours before his mommy has to come get him. i think you're doing great. there's no way i could have kept a 2 yr old that fresh out of surgery. you're my hero. i hope and pray everything goes well with the tube and there's no more leaking. let us know how you do. i think you will continue to improve, just give yourself time. it hasn't been that long. btw, i don't think we'll ever be able to eat and then bend over. like i said, my surgery was 2/28/12 and i still cannot bend over even 2 hrs after i've eaten or i lose it.....ugh.
God bless you, Lorna,
dj
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it just amazes me
how well you've done. Carry on!
Pat
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You've been throught a LOT....
so "getting well" is right up there with "already well".....just a little further to the end of the path and back on the paved road.
What a total pain in the butt (well, maybe not the butt), but a pain none the less.....having your tube stoma still leaking. I'd be dancing into the GI Doc's office to get that fixed. You're doing pretty damned good if you ask me.....you've been through a LOT.
p
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Glad to hear....
Glad to hear you doing so good. Yep, it is life changing. Your tast changes because you can't smell anymore. Mine has gotten a little better but I do miss the smell of food cooking. But there is a bright side as well. You can't smell it if you burn it eithor. LOL. I did, and my wife came in and asked what the heck I did. I miss smelling the flowers as well. You will keep getting better, and adjusting to the "New You". Keep up the great work my friend.
Bill Oct 2013
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COMING BACK
Hey Lorna,
I'm glad to hear that you are on the come back trail. As in all things recovery related, it always takes so much longer than we want, but the good news is that life deffinitely gets better with time, and the ever popular patience. I'm about 3 years out from my laryngectomy, and I'm doing better than I ever imagined that I would be, but the trail was long, and trials hard. Yeah, the bending over is a big deal, as the regurgitation can lead to aspiration pneumonia, and who needs that. It's great that you are eating and swallowing, and gradually getting your energy back, as well as getting back into work at a slow pace.
Hopefully, you will have your tube fistula healing issues resolved soon, this is another healing with time and getting by with a little help from your friends, i.e. doc, situations. Hang in there, and keep it mov'in forward.
PATRICK
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patrick and lornal, for thepatricke said:COMING BACK
Hey Lorna,
I'm glad to hear that you are on the come back trail. As in all things recovery related, it always takes so much longer than we want, but the good news is that life deffinitely gets better with time, and the ever popular patience. I'm about 3 years out from my laryngectomy, and I'm doing better than I ever imagined that I would be, but the trail was long, and trials hard. Yeah, the bending over is a big deal, as the regurgitation can lead to aspiration pneumonia, and who needs that. It's great that you are eating and swallowing, and gradually getting your energy back, as well as getting back into work at a slow pace.
Hopefully, you will have your tube fistula healing issues resolved soon, this is another healing with time and getting by with a little help from your friends, i.e. doc, situations. Hang in there, and keep it mov'in forward.
PATRICK
patrick and lornal, for the last 8 months or so (lary since 2/28/12) when i drink something then try to talk, i spit all over myself. the same if i eat and then try to talk. i don't even realize the food and drink are still in my throat until i try to talk and it comes back up. i've had my throat stretched several times so i don't think that's the problem. even water gets stuck and doesn't go down sometimes. this can happen as much as an hour after i've eaten or taken a drink of something. do you have this problem? if so, do you have any solutions. is this something I should be worried about? i mentioned it to my doctor but he didn't say one word about it. when it comes to stuff like this, i think i get better info here. like you, i also cannot bend over after eating but that i understand. spitting when i talk is very embarrasing even when its just my family that's around. not to mention, i have to change tops regularly :0( any advice/input is much appreciated.
dj
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Stuck waterdebbiejeanne said:patrick and lornal, for the
patrick and lornal, for the last 8 months or so (lary since 2/28/12) when i drink something then try to talk, i spit all over myself. the same if i eat and then try to talk. i don't even realize the food and drink are still in my throat until i try to talk and it comes back up. i've had my throat stretched several times so i don't think that's the problem. even water gets stuck and doesn't go down sometimes. this can happen as much as an hour after i've eaten or taken a drink of something. do you have this problem? if so, do you have any solutions. is this something I should be worried about? i mentioned it to my doctor but he didn't say one word about it. when it comes to stuff like this, i think i get better info here. like you, i also cannot bend over after eating but that i understand. spitting when i talk is very embarrasing even when its just my family that's around. not to mention, i have to change tops regularly :0( any advice/input is much appreciated.
dj
DJ, yes - but I don't think they really are stuck. I think it is just really SLOW to go down. I've take a little tiny synthroid pill first thing in the morning. Then I take a shower. bending down to lay the bath mat down - I've actually had the pill come back into my mouth. Tastes nasty.
Had my tube site closed up. Can't eat for a bit, and need to lay down after drinking (that will be fun). The GI doc said the reconstruction looked good. On the Web Whispers newsletter, I remember some one commenting on seeing the hair from the flap. I asked him to take a picture if he saw any on my. He did - and took the pricture - pretty cool.
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SWALLOW ISSUESdebbiejeanne said:patrick and lornal, for the
patrick and lornal, for the last 8 months or so (lary since 2/28/12) when i drink something then try to talk, i spit all over myself. the same if i eat and then try to talk. i don't even realize the food and drink are still in my throat until i try to talk and it comes back up. i've had my throat stretched several times so i don't think that's the problem. even water gets stuck and doesn't go down sometimes. this can happen as much as an hour after i've eaten or taken a drink of something. do you have this problem? if so, do you have any solutions. is this something I should be worried about? i mentioned it to my doctor but he didn't say one word about it. when it comes to stuff like this, i think i get better info here. like you, i also cannot bend over after eating but that i understand. spitting when i talk is very embarrasing even when its just my family that's around. not to mention, i have to change tops regularly :0( any advice/input is much appreciated.
dj
Hey Debbie,
I'm so sorry to hear about all of the problems that you have been having for the past 8 months, it is unbelievable, although of course believable, but after all this time, why; there has to be a reason, and solution. The problems sound unusual to me, in that, I have not had them or read on Webwhispers about others having similar issues, and especially since you did not have them until now. I would think that gravity alone would cause the food and drink to go into your stomach without a problem, so yeah, you defininately need to get some answers and remedies. My wife, Diane, and I first are amazed that your doc is not concerned about these issues, and second, think that you might want to consider getting a second opinion. Also, have you chatted with your SLP about these changes? We recommend that you check on the International Association of Laryngectomees website to see if there is information there from others who have had the same experiences, and also put the question on Webwhispers. I truely hope that you are able to find a solution very quickly, as living with the discomfort, uncertainty, and spitaccident embaressments are experiences that need to be things of the past as soon as possible. Please keep us posted.
PATRICK
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That should not happendebbiejeanne said:patrick and lornal, for the
patrick and lornal, for the last 8 months or so (lary since 2/28/12) when i drink something then try to talk, i spit all over myself. the same if i eat and then try to talk. i don't even realize the food and drink are still in my throat until i try to talk and it comes back up. i've had my throat stretched several times so i don't think that's the problem. even water gets stuck and doesn't go down sometimes. this can happen as much as an hour after i've eaten or taken a drink of something. do you have this problem? if so, do you have any solutions. is this something I should be worried about? i mentioned it to my doctor but he didn't say one word about it. when it comes to stuff like this, i think i get better info here. like you, i also cannot bend over after eating but that i understand. spitting when i talk is very embarrasing even when its just my family that's around. not to mention, i have to change tops regularly :0( any advice/input is much appreciated.
dj
Dj that should not be happening. If you drink water and swallow it should go down at least far enought it will stay when you talk if you wait a few seconds before talking. Carbonated soda is a differentstory. Cold soda can make it very hard to talk for a while. The foam seems to stay for a while and can be very hard to talk.That will come up to the mouth. If I drink non-carbonated I can talk, but I do have to wait about five seconds for it to go down. Eating is much different. I don't really talk if I am eating any more. I have to drink and clear my throat first, so I just don't like to have to talk when eating. Remember, I didn't have radation, which might make a lot of differance. I do get a lot of regurgitation if I have a hard cough or a bubble of gas from acid reflex. Remember that your larnyx is what helped keep food down, as well as what allowed you to hold your breath, and it's gone. The spinker muscle is there but can't work the same be cause of the surgery and all the cutting of so many other muscles. Then you add the damage from radation to the muscles. Heck, were lucky to swallow let a lone talk too. LOL
Bill
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Good Examplewmc said:That should not happen
Dj that should not be happening. If you drink water and swallow it should go down at least far enought it will stay when you talk if you wait a few seconds before talking. Carbonated soda is a differentstory. Cold soda can make it very hard to talk for a while. The foam seems to stay for a while and can be very hard to talk.That will come up to the mouth. If I drink non-carbonated I can talk, but I do have to wait about five seconds for it to go down. Eating is much different. I don't really talk if I am eating any more. I have to drink and clear my throat first, so I just don't like to have to talk when eating. Remember, I didn't have radation, which might make a lot of differance. I do get a lot of regurgitation if I have a hard cough or a bubble of gas from acid reflex. Remember that your larnyx is what helped keep food down, as well as what allowed you to hold your breath, and it's gone. The spinker muscle is there but can't work the same be cause of the surgery and all the cutting of so many other muscles. Then you add the damage from radation to the muscles. Heck, were lucky to swallow let a lone talk too. LOL
Bill
Lorna
What a great example you are to everyone! You've been thru the wringer but always have a good attitude.
Sending my best to you Lorna along with some bigtime Mojo!
Your friend from STL
Greg
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Thankshwt said:Lorna
Happy to read your post and to know all the progress that you've made.
God Bless,
Candi
Thanks Candi! How are you doing? And your husband?
I am stuck at home this week. I tried so hard not to get worn down. But I failed - and now I have shingles on my face. My right eye lid is almost swollen shut. I saw the eye doctor yesterday - totally suprised with that diagnosis. I never had chicken pox - but had the vaccine about 19 years ago. Hopefully the meds he gave me will let me get over this quickly.
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You are a trooper
Any 2 year old tires me out. Maybe drawing pictures with her would be a help in communicating or does she know the baby sign language? Hope she will learn to understand you soon and not be afraid. Cannot believe you are working so soon.
Take care,
PJ
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Wowwmc said:Glad to hear....
Glad to hear you doing so good. Yep, it is life changing. Your tast changes because you can't smell anymore. Mine has gotten a little better but I do miss the smell of food cooking. But there is a bright side as well. You can't smell it if you burn it eithor. LOL. I did, and my wife came in and asked what the heck I did. I miss smelling the flowers as well. You will keep getting better, and adjusting to the "New You". Keep up the great work my friend.
Bill Oct 2013
Bill sounds like you are a trooper I read your profile sounds like u have had a battle but a good one you are a very positive person and looks like you are a strong person cancer is a tough thing I am glad to hear that u re doing good doctors are a great thing but you are your own doctor and to pik the care is very important and you made good choices all the best it's normal to have down days even when you don't have cancer you have down days lol keep in touch thanks for replying to my thred
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PJ47 said:
You are a trooper
Any 2 year old tires me out. Maybe drawing pictures with her would be a help in communicating or does she know the baby sign language? Hope she will learn to understand you soon and not be afraid. Cannot believe you are working so soon.
Take care,
PJ
I'm rethinking the working thing - at least as much as I hae been. I had been trying so hard to NOT tire myself out - and was only working 3 days a week.
That failed miserably. Got shingles now - on my face. I never had the chicken pox - but had the vaccine. I'm sure I got them because I was just exhausted.
I'll be seeing my primary care on Tuesday - and we'll have to discuss. Don't want to go though this again.
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lornal, i so understandlornal said:I'm rethinking the working thing - at least as much as I hae been. I had been trying so hard to NOT tire myself out - and was only working 3 days a week.
That failed miserably. Got shingles now - on my face. I never had the chicken pox - but had the vaccine. I'm sure I got them because I was just exhausted.
I'll be seeing my primary care on Tuesday - and we'll have to discuss. Don't want to go though this again.
lornal, i so understand that. i cut my front yard which is not too big and half way thru i feel like i won't be able to finish. finished rads 10/22/09, surgery (lary) was 2/28/12, and i still tire easily. you are still fresh from surgery so this doesn't surprise me. its a lot to go thru and our body has a hard time recovering. praying that you feel better but don't be too hard on yourself.
God bless you,
dj
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Shingles hurt.....lornal said:I'm rethinking the working thing - at least as much as I hae been. I had been trying so hard to NOT tire myself out - and was only working 3 days a week.
That failed miserably. Got shingles now - on my face. I never had the chicken pox - but had the vaccine. I'm sure I got them because I was just exhausted.
I'll be seeing my primary care on Tuesday - and we'll have to discuss. Don't want to go though this again.
So very sorry you got shingles. Keep your hands away from your stoma, you can spread them like chicken pox somewhat. I had them many years ago. Prayers going your way.
Bill oct 2013
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Damn shingleslornal said:I'm rethinking the working thing - at least as much as I hae been. I had been trying so hard to NOT tire myself out - and was only working 3 days a week.
That failed miserably. Got shingles now - on my face. I never had the chicken pox - but had the vaccine. I'm sure I got them because I was just exhausted.
I'll be seeing my primary care on Tuesday - and we'll have to discuss. Don't want to go though this again.
Get thee to a Doc (if you have not gone already) right away so it may be treated. Shingles on the face can affect your eyesight. They ususally appear when the immune system is compromised and with all you have endured that certainly may have been the deciding factor. Some people even get shingles following the vaccine due to a compromised immune systems. Be safe and take care of yourself. So sorry you are going through this.
PJ
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Great to hear!
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