Heard From the Surgeon - Couple of Questions
Prior to that fun though, there will be placement of the feeding tube, which is scheduled for Thursday morning. That will be a one night hospital stay.
He won't be able to swallow for at least a week or two, and maybe never after surgery. His voice should not be affected.
The good news is that the doctor says he thinks, looking at all the scans, MRI, etc. they can get it out and come away with "clean margins" which in cancer talk means healthy, cancer free tissue.
Bob was a bit shakey after receiving this news (duh). I could tell in his voice over the phone that he was struggling, so I came home immediately from work and we talked about it for a long time. He says as long as they have plenty of good drugs, he's really not THAT concerned about pain, what he's afraid of I think is not ever being able to talk or swallow again. He's worried about me and thinks I need some xanax! Really, I am ok... just so tired of all this waiting. But if this will get this awful cancer beast out of our lives I am ready to take it on. Brian is still at work, am kind of dreading looking into those brown eyes and seeing the sadness and fear - that will probably bring me to tears.
No date on the surgery yet, but I expect it to move pretty quickly since they already called about the feeding tube and the appt with the ENT Reconstruction Specialist (I had no idea there was such a thing...)
Thanks for the continued good thoughts and prayers, we appreciate it very much.
Time to put on my big girl panties and deal with it!
QUESTIONS -
Feeding tube - I've heard the first few days is painful??? Any suggestions on the dang thing? He avoided it the first time around... we are really dreading the thing.
Surgery - anybody have this flap surgery on the throat? Recovery info?? Long recovery? painful?? Any advice?
THANK YOU!
Comments
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Hi Kimmy
I'm so sorry to hear what you are dealing with. I can only comment on the feeding tube, or "tubie" as we affectionately call it. My husband was also in the hospital overnight when he had it put in (just for observation). We were dreading it, but honestly, the thought of it was worse than it actually is. It wasn't very painful for my husband. The important thing is to keep it clean and flushed. He tapes it up and you wouldn't know that he has one. The mistake we made was not using it in the beginning (we were hesitant to use it at first) to supplement so he lost pounds when he shouldn't have. He's had it since April and it has truly been a lifesaver. We got the gravity pole and the feeding bags and cases of Compleat (it's like Ensure but without the added corn syrup).
Sending you lots of prayers and positive thoughts.0 -
The feeding tube isn't bad.
The feeding tube isn't bad. The only thing that hurts is the hole through the stomach muscle. It will be soar for a week, maybe less. He will only notice the pain while laying down and attempting to sit up in bed and sometimes while sitting down and standing up. Other than that it is painless, from my experience at least. After about a week he wont feel a thing. Just make sure to keep the area clean, it will drain for a bit and the docs will go over hygiene with you and him. After that first phase normal washing around the hole is a good idea just to prevent infection. I have had mine for three months and no issues at all. I do leak a little bit and it crusts up around the hole. I just scrape it off in the shower and wash around, it seems to happen over night while sleeping. Don't be scared of it, look at it as a tool. He will adapt to it and it will be "normal" over time. I can do about everything normal in my life without restriction, except for swimming. Docs don't want you to submerge your body, this is to prevent dirty water and bacteria from entering the body cavity through the feeding tube hole. I did have some pain in recovery after surgery, it seemed to be gas. He can either "pass" it or open the tube and let it drain a bit to release the pressure if he experiences this, he may not.
I wish you and yours the best.0 -
Tube
Hi Kimmy, I can't help you much with your husband's particular sugery. I did have a left side neck disection recently. About fifteen lymph nodes were removes. One piece of advice on the surgery itself. One of the most unpleasant immediate effects of the surgery for me was constipation. Lots of pain killer in hospital recovery will do that. If I'd know I would have been taking a slow acting "Smoothlax" (it's what I use, store brand) powder mixed with water starting the day before, and for the next few days.
I didn't have any discomfort for my feeding tube placement about six months ago--still have it. I was outpaient. Some people do have gas buildup in their stomachs which they relieve by simply opening the end of the tube periodically until it subsides, but I had no problem, and no pain. One other hint, on the tube. I taped it for awhile, then I got tired of the taping and un-taping. I bought a 4-inch wide length of the elastic wrap used to wrap an ankle or knee, cut it to get a length that would hold in place aruond my waist, then folded it in half, lengh wise. I use a safety pin to join the ends, leave the open side of the fold "up" and put my g tube in it, like a wrap-a-round pouch. Works great and you're not taping all the time. I wish you and your husband the best.
Hal0 -
TORSLena Rose said:Hi Kimmy
I'm so sorry to hear what you are dealing with. I can only comment on the feeding tube, or "tubie" as we affectionately call it. My husband was also in the hospital overnight when he had it put in (just for observation). We were dreading it, but honestly, the thought of it was worse than it actually is. It wasn't very painful for my husband. The important thing is to keep it clean and flushed. He tapes it up and you wouldn't know that he has one. The mistake we made was not using it in the beginning (we were hesitant to use it at first) to supplement so he lost pounds when he shouldn't have. He's had it since April and it has truly been a lifesaver. We got the gravity pole and the feeding bags and cases of Compleat (it's like Ensure but without the added corn syrup).
Sending you lots of prayers and positive thoughts.
Hi Kimmy,
I am sorry to hear about the surgery that lies ahead for your husband. I just have one thought about the surgery and I don't know if it is worth looking into, but Mark had TORS (Trans Oral Robotic Surgery). It is a surgeon guided robot that can get into the oral cavity and throat in a way that no human hand can. It can also turn and rotate and get at angles that the human hand cannot. From what I understand it has made some of these oral surgeries less brutal. You are in Dallas, I am in PA. Mark's doctor, Greg Weinstein, at the Univ. of Penn Hospital, adapted this robot to do head and neck surgeries. He has told us that he has been training doctors across the US to use it. It may be a question worth asking so the surgery does not have to be so drastic.
As for the feeding tube. Mark did not stay in overnite, he had some mild pain associated with it for a couple days, but it quickly becomes a very minor thing with a huge purpose.
Hold on to each other...you will get through this together.
We are here.
Kim0 -
PegLena Rose said:Hi Kimmy
I'm so sorry to hear what you are dealing with. I can only comment on the feeding tube, or "tubie" as we affectionately call it. My husband was also in the hospital overnight when he had it put in (just for observation). We were dreading it, but honestly, the thought of it was worse than it actually is. It wasn't very painful for my husband. The important thing is to keep it clean and flushed. He tapes it up and you wouldn't know that he has one. The mistake we made was not using it in the beginning (we were hesitant to use it at first) to supplement so he lost pounds when he shouldn't have. He's had it since April and it has truly been a lifesaver. We got the gravity pole and the feeding bags and cases of Compleat (it's like Ensure but without the added corn syrup).
Sending you lots of prayers and positive thoughts.
Hi Kimmy,
Sorry to hear about the difficulties Bob will have to go through. Glad you are on his side. The feeding tube is no big deal. You learn to live with it so don't fear it, it truly is and was, for me, a life saver. When I went into surgery I thought they were going to have to do a flap but they didn't have to. They did however sacrifice a nerve that went to my right shoulder. I, being hard headed, thought that I could "REPAIR" myself and did not go to the physical therapy that was prescribed. I am now going and he is helping me a great deal. I guess my point is hang in there and keep posting here and allow us to help if we can. Prayers from nearby are still being sent.
Best,
Steve0 -
Surgery and tube
Tube really doesn't hurt. Mine was done as outpatient about a week before my supposed "big big" surgery. Once it was placed I just used medical adhesive tape to tape it to my stomach. Some tapes hold better than others and I have no idea which one was the best. That was probably the most painful part was removing the tape for my feedings. Then just stick it back on when done.
After each feeding make sure to rinse the tube some water. This will help keep it clean. The doctors will tell you how much nutrition he will need every day. Don't try and do it in 3 sittings. Spread it out with less cans per feeding, just more of them so he wont be stuffed and wont have room for the water rinse.
The surgery I had was supposed to include a flap, but for my tongue. This was supposed to replace 85-90% of my tongue but instead because they only found scar tissue, they only took the base and put the flap back into my stomach where they were prepping to take it from. I was in the hospital with a trache for about a week and during that time they had me walking the day after surgery.
Everyone heals different and recovers at their own pace. Don't get discouraged if he has pain, we all normally have some. They will have pain meds available for him.
Something that might be useful is a small whiteboard with a pen and eraser so he will be able to communicate.0 -
The tube
I had mine placed in outpatient surgery and the next day I started chemo and radiation. Make sure you use it enough. I had a lot of problems with dehydration.
I really didn't want one at first, but I know that I needed it. Now it doesn't seem like such a big deal.0 -
Hi Kimmy
You are right on bad the news, but there is a bright side to all this and that is Bob being cancer free. Living with the side affects is not easy but we just consider it our new normal and keep on going through life. I live with the side affect of being over radiated, it’s not easy but I am alive to see and do things with my grandchildren that I would not have been able to do if it was not for the treatment.
I hope and pray that everything will work out for the best
God be with you both
Hondo0 -
SURGERYKimba1505 said:TORS
Hi Kimmy,
I am sorry to hear about the surgery that lies ahead for your husband. I just have one thought about the surgery and I don't know if it is worth looking into, but Mark had TORS (Trans Oral Robotic Surgery). It is a surgeon guided robot that can get into the oral cavity and throat in a way that no human hand can. It can also turn and rotate and get at angles that the human hand cannot. From what I understand it has made some of these oral surgeries less brutal. You are in Dallas, I am in PA. Mark's doctor, Greg Weinstein, at the Univ. of Penn Hospital, adapted this robot to do head and neck surgeries. He has told us that he has been training doctors across the US to use it. It may be a question worth asking so the surgery does not have to be so drastic.
As for the feeding tube. Mark did not stay in overnite, he had some mild pain associated with it for a couple days, but it quickly becomes a very minor thing with a huge purpose.
Hold on to each other...you will get through this together.
We are here.
Kim
The robotic equipment was not available when I had my surgery. I had Trans Oral Microscopic Laser Surgery and my Doc. told me due to the severity of my surgery he would have used the microscopic VS the robotic on me. He said there was not enough room to use it. My Doc, Jason Diaz was also trained at Penn, and is only one of three surgeons trained to use the equipment in all of St. Louis. He is affilliated with Washington University in St. Louis, Barnes Jewish Hospital.
I have been told Penn is the Mecca of training for the robotic equipent as related to Head and Neck Cancer Surgery. I would agree as Dr. Diaz not only saved my life, but was able to only take affected tissue and no muscle, no veins and only one nerve near my jaw was removed resulting in ear lobe numbness.
Best to you and your family Kimmy.
You both will pull through this.0 -
I know two
I did not have the surgery but know of two people who have had it and after 3 years for the one and 1 1/2 years for the other they both are doing well. Early on they had problems swallowing but a couple months after they slowly gained a good portion of it back.
Only advice I would offer would be to maintain a Positive Mental Attitude.
Please keep us updated as you can.0 -
Thanksfisrpotpe said:I know two
I did not have the surgery but know of two people who have had it and after 3 years for the one and 1 1/2 years for the other they both are doing well. Early on they had problems swallowing but a couple months after they slowly gained a good portion of it back.
Only advice I would offer would be to maintain a Positive Mental Attitude.
Please keep us updated as you can.
everyone. All comments and advice are appreciated. As all this has a chance to settle in, we are doing better. Bob has a very positive mental attitude - says he has no choice in what to do - may as well jump on board and get 'er done! I'm a bit more skeptical... he is the type who doesn't want to know stuff, and I want to know everything. It works pretty well actually for us as a pair.
I've taken all the info on the feeding tube in. Still dreading the thing, but we will adjust.
Need to take it one step at a time and only worry about what is happening next, not what is going to happen weeks or months down the road. Easier said than done, but I am trying.
Meanwhile, Bob is enjoying an eating extravaganza before the surgery, trying to put on a little weight. It is hard for him, but he is giving it a heck of a try!0 -
Watch out !!!kimmygarland said:Thanks
everyone. All comments and advice are appreciated. As all this has a chance to settle in, we are doing better. Bob has a very positive mental attitude - says he has no choice in what to do - may as well jump on board and get 'er done! I'm a bit more skeptical... he is the type who doesn't want to know stuff, and I want to know everything. It works pretty well actually for us as a pair.
I've taken all the info on the feeding tube in. Still dreading the thing, but we will adjust.
Need to take it one step at a time and only worry about what is happening next, not what is going to happen weeks or months down the road. Easier said than done, but I am trying.
Meanwhile, Bob is enjoying an eating extravaganza before the surgery, trying to put on a little weight. It is hard for him, but he is giving it a heck of a try!
Kimmy,
When I attempted to do that before my first treatment my husband gained 20 pounds.0 -
For Kimmykimmygarland said:Thanks
everyone. All comments and advice are appreciated. As all this has a chance to settle in, we are doing better. Bob has a very positive mental attitude - says he has no choice in what to do - may as well jump on board and get 'er done! I'm a bit more skeptical... he is the type who doesn't want to know stuff, and I want to know everything. It works pretty well actually for us as a pair.
I've taken all the info on the feeding tube in. Still dreading the thing, but we will adjust.
Need to take it one step at a time and only worry about what is happening next, not what is going to happen weeks or months down the road. Easier said than done, but I am trying.
Meanwhile, Bob is enjoying an eating extravaganza before the surgery, trying to put on a little weight. It is hard for him, but he is giving it a heck of a try!
Be aware that there are two different kinds of feeding tubes. Some folks, me included, got the PEG, or percutaneous endoscopic gastronomy tube. It is installed during a brief outpatient surgery where they go in endoscopically through your mouth, down the throat, into the stomach and up and out through a tiny incision from your stomach out through the side of your body cavity. It didn't even require anesthesia - only a light sedative and one of those pills that makes you forget afterwards. I was awake almost immediately afterward. I had no pain, only a brief discomfort and was using the tube within a couple of hours of receiving it.
Other folks here got a "G Tube" which apparently requires an in-patient surgical procedure, full anesthesia and an overnight stay. You come out with some sort of "clip" holding things in place for a few days, till it falls away. You can't use the G tube for a number of days after receiving it, till the surgical site heals up. it seems to be a little more painful than the other procedure. I know ViviC got that one. I'm not sure who else here did.
Good luck and be strong.
Deb0 -
PEGD Lewis said:For Kimmy
Be aware that there are two different kinds of feeding tubes. Some folks, me included, got the PEG, or percutaneous endoscopic gastronomy tube. It is installed during a brief outpatient surgery where they go in endoscopically through your mouth, down the throat, into the stomach and up and out through a tiny incision from your stomach out through the side of your body cavity. It didn't even require anesthesia - only a light sedative and one of those pills that makes you forget afterwards. I was awake almost immediately afterward. I had no pain, only a brief discomfort and was using the tube within a couple of hours of receiving it.
Other folks here got a "G Tube" which apparently requires an in-patient surgical procedure, full anesthesia and an overnight stay. You come out with some sort of "clip" holding things in place for a few days, till it falls away. You can't use the G tube for a number of days after receiving it, till the surgical site heals up. it seems to be a little more painful than the other procedure. I know ViviC got that one. I'm not sure who else here did.
Good luck and be strong.
Deb
He is getting the PEG and it's being done endoscipally thru mouth, with tiny incision in stomach. for whatever reason, this hospital makes them stay overnight for observation. Weird.. how different hospitals protocols are.0 -
PEG Tube
My placement was an overnight stay and I'm glad for it. I was too loopy on the meds to remember half of the instructions they gave me for the care of my PEG. I was sore for a few days after, but I've had it for about three weeks now and it's almost second nature. It's an annoyance, but a necessary one. I'm using it as a "carrot" to remind me to do my swallowing exercises. The sooner I don't *need* to use it, the sooner it comes out.0
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