Posted By: Bette Can't sleep - 11-10-2012 02:08 PM
I'm a little bewildered with myself. This is my husband's third bout with this stupid cancer and you would think I would be a pro at handling the emotions and all that goes with it. Instead I find that I am becoming more of a basket case. I can't sleep that's the worst. I'm wide awake at 3 or 4 in the morning after not going to bed til 12 or 1. I just want to get the surgery behind us. So recovery can begin. Unfortunately we still have 2 or 3 weeks to wait. Thankfully we see one of the surgeons on Wednesday ofr the last consult. The other bad thing is both our children are out of the country and I can't communicate with either right now. I'm feeling pretty alone. My husband is the type that doesn't want to sit around and talk about it. He say's there is no sense harping on the gastly subject. So I guess that is why I am venting here. No place else. I wish I would get to the angry stage or the grief stage already so I could have a good cry and probably feel better. Right now I'm stuck in the numb or stunned stage. A state of shock I guess. I find myself walking around just shaking my head.... I know there are many here at this site that have gone through exactly the same thing. And thank you all for listening.

Just needed a pity party for a little bit.

Bette
Posted By: Charm2017 Re: Can't sleep - 11-10-2012 02:40 PM
Bette

It came as a surprise to both my wife and myself just how hard the third time diagnosis of cancer hit us. From my point of view as the patient, it's even harder on the caregiver. My advice is based on our personal experience.

You should make an appointment asap with your general practitioner/family doctor and tell him/her about the inability to sleep and the fact that this is the third time around. Medically you are experiencing what is known as "situational anxiety", and like any medical condition, you should be treated for it. You don't need to go see a psychiatrist just a GP or even a physician's assistant. Ask for anti anxiety medication.

My wife read your post and said: YES, that is exactly how she felt. No sleep: basket case, no one to understand. She called our family doctor's office and said she needed anti anxiety help due to this third round of cancer. I had recommended Ativan, but the physician's assistant told her not strong enough or appropriate, instead she got prescriptions for Zoloft and Xanax. They really worked. In fact,she just renewed her Zoloft prescription.

Trust me on this, the third time is worst than the second time. You'd think it wouldn't be, but it is. The coping mechanisms that worked before just don't cut it.
I'm just a year younger than your husband so I remember the General Electric advertisement: Better things for better living thru chemistry. It has made a world of difference for my wife. You owe it not only to yourself, but to your husband and your children to get the medical help and TX you need and deserve. You wouldn't blink an eye if the doctors put your husband on something. He will need you now more than ever. Please take care of yourself.
You can still post and have a pity party, but call your doctor and make that appointment.
Oh, and no, there are not a lot of people here on OCF who have faced cancer three times. My wife got thru the first two times but the third time, she was also "a little bewildered". Trust me on this. Get some Zoloft and Xanax
Charm
Posted By: Bette Re: Can't sleep - 11-10-2012 03:50 PM
Charm,

Thanks for the advise. I will call the Dr. on Monday. There is so much more to our story. I just having gone through a liver transplant and my husband 3 mos. post op from an aortic valve replacement w/ CABG 4 bypass. I've used anti-depressants in the past going throough my own ordeal. For some reason it just didn't dawn on me for a little chemical help.

Bette
Posted By: KP5 Re: Can't sleep - 11-10-2012 09:32 PM
Gosh Bette, you have had a go of it. I'm glad Charm gave you that advice. Good stuff. I take xanax still since about the last week of Kev's tx and that was a year ago! Just a lot going on here too and it helps me cope. I don't take it every day, just when feeling overwhelmed.
And you can have a vent session anytime!! That's one of the reason's we are here; cuz' we know someone will know how we feel and commisserate with us! Invaluable!!
So sorry for all you are going through.
Kathy
Posted By: tamvonk Re: Can't sleep - 11-11-2012 06:28 AM
Ditto what Charm said.
I took sleeping pills every night. Sometimes I took two. I just had to go to bed to sleep, not constantly go through everything in my head. I borrowed far to much sorrow from tomorrow without those babies.
Tammy
Posted By: EricS Re: Can't sleep - 11-11-2012 07:17 AM
I didn't have good experiences with the benzodiazepines, or sleeping pills. The Sleeping meds actually made me sleep walk. I did everything from cooking eggs in my sleep (that almost burnt the house down) to hunt the ninjas on the roof of my parents 3 story home in the middle of winter. No joke, my wife woke up and noticed I wasn't in the bed, or in the house so she went outside. I snuck up behind her and put her in a choke hold. Being a lifelong wrestler and mixed martial artist, not the best scenario.

Marijuana (vaporized or ingested never smoked) was the magic bullet for me, especially when on pain medications, helped me get off and stay off the opiates. I use it occasionally to help with pain, and to sleep, with the on side effects of making every thing funnier and the constant need to eat.



Posted By: Bette Re: Can't sleep - 11-28-2012 02:38 AM
Just wanted everyone to know that the holiday at my daughter's and seeing the grandkids helped alot. The doc rx'd zoloft and trazadone to sleep. It's all starting to work and now that we are a week out. I'm feeling more in control.
Thanks to all of you for help and concern.
Posted By: EricS Re: Can't sleep - 11-28-2012 03:52 AM
Very good to hear Bette, keep your chin up sister
Posted By: tamvonk Re: Can't sleep - 11-28-2012 04:07 AM
So pleased to hear this Bette.
Posted By: emilyp Re: Can't sleep - 11-28-2012 03:29 PM
glad you are finally able to rest!
Insomnia is the worst. It is so frustrating and stressful watching the clock tick away and caulculating in your head how much sleep you would get if you fell asleep at that moment. I have always struggled with it, but it got out of hand during and after treatment. I have tried everything under the sun, and if I am having one of those nights, nothing seems to work! I tried ambien (12 mg time release), lunesta, adivan, lexapro, marijuana, and a combination of several of those, and some nights it just didn't work.

In the end, adivan (anti-anxiety) seemed to work the best for me. The insomnia finally went away for the most part, but i still take the lorazepam several nights a week if I feel like my mind is racing. I tend to go in cycles of weeks that i cant sleep, then ill be fine for a while. I am in one of my sleepless cycles right now... last night i ended up taking hydrocodone, hydropmorphone(for biopsy pain), ambien and lorazepam until i was finally able to fall asleep at 2am. Sorry for the long rant, i think i am slightly delirious from exhaustion smile

Anyway, you are not alone! hang in there!
Posted By: David2 Re: Can't sleep - 11-30-2012 05:01 PM
That's great, Bette. Hope it continues to be better for you.

And Emily.... man, you've been through the ringer. Ativan has been very helpful to me too, it's just about the only thing that allows me to sleep a full night. Hope you get a few good nights' sleep, and then more than a few!
Posted By: itsoktoday Re: Can't sleep - 12-02-2012 03:51 AM
I am glad to hear this from all of you caregivers. This last surgery for neck dissection which happend quickly from the day we heard until the day we were in the emergency room really tore up my husband. I made him see a therapyst and he said he couldn't relate. I said to him do you think they can relate to you when you are all of the place try again. He did it helped and now he has an appointment to get some meds. I told him don't be afraid of them. They are there to support you when nothing else is working. I told him I have been on them for years and if hadn't been I don't know if would have made it through the first cancer. So yes get help. I hope you all get a good nights sleep and vent as long as you want, I am a good listner.
Robijn
Posted By: Bette Re: Can't sleep - 12-02-2012 03:37 PM
Thanks to everyone for your support this last week. 3 days to surgery and I'm getting a bit anxious. I'm keeping busy. I have last minute packing to do today as we are leaving Monday morning for the city. Decided to go a day early to see the grandkids as I probably won't get to see them for Christmas this year. Haven't decided if I will give them thier Christmas presents now or just leave them under the tree. Tuesday will be a busy day before the surgery. REg has to have some pre-op tests. Hopefully that will all go well so there will no delays. We have waited long enough. Besides the pain is really getting bad now. Obviously that tumoor is pressing on a nerve. Will post daily once he is the hospital.

Again, thanks to all.
Posted By: PaulB Re: Can't sleep - 12-02-2012 03:41 PM
Good luck with the surgery, and recovery!
Posted By: tamvonk Re: Can't sleep - 12-03-2012 06:34 AM
Thinking of you and Reggie.
Tammy
Posted By: Bette Re: Can't sleep - 12-03-2012 01:22 PM
Thank you Tammy and Paulb
Posted By: ChristineB Re: Can't sleep - 12-03-2012 01:51 PM
Bette, have safe travels. Best wishes to your husband with his surgery!!! Waiting to see a good post afterwards!
Posted By: Bette Re: Can't sleep - 12-03-2012 02:17 PM
Thanks Christine. I have a question for you or any admin for that matter. Is there a mobile app for OCF? If so, where may I find It?
Posted By: Anne-Marie Re: Can't sleep - 12-03-2012 07:14 PM
Bette, on an iPhone, all you would have to do is go to the OCF website and then save it to your home screen and it looks just like an app. This can probably be done on other smart phone. There is an OCF "talk for me" app in the works which Christine or one of the Admins can give you more info about.
Posted By: Bette Re: Can't sleep - 12-03-2012 11:22 PM
Thanx for the info.
Posted By: ChristineB Re: Can't sleep - 12-04-2012 04:03 AM
At this time the ap is still in the works.
Posted By: Bette Re: Can't sleep - 12-05-2012 01:41 PM
well, here it is 5:30 a.m. on Wednesday and all the sleeping pills in the world haven't worked. So I just decided to get up and pace the floor for awhile. We will be leaving for the hospital in about an hour. It's a rainy day in the city, but at least it's not windy. I ask everyone today to please say a prayer for Reggie. Thanks to you all.
Posted By: tamvonk Re: Can't sleep - 12-05-2012 10:18 PM
Bette, I will say prayers for both you and Reggie. Know that he will be in safe hands today.
Tammy
Posted By: Bette Re: Can't sleep - 12-05-2012 10:54 PM
2:50 p.m. Surgery started at 10:37 am. Everything is going okay. It's just about time for another update from the O.R. IT's nice that they call about every hour to let me know he's okay.
Posted By: Anne-Marie Re: Can't sleep - 12-06-2012 07:58 AM
Glad to hear things are going ok, Bette. It really is nice that that you get hourly updates on how Reggie is doing. Hope you are doing ok, too. Do you have someone with you to share the waiting?
Posted By: ChristineB Re: Can't sleep - 12-06-2012 12:22 PM
Ive been checking this thread off and on all day for another update. Hoping everything went smoothly and your husband is resting comfortably. Best wishes for a pain free and speedy recovery.
Posted By: Chuckles0504 Re: Can't sleep - 12-06-2012 12:31 PM
I, too, have been continuously checking for another update. My husband is scheduled for the exact same surgery on the 17th of December, so I am anxious to see how things went. You guys will continue to be in my thoughts and prayers.
Posted By: Bette Re: Can't sleep - 12-06-2012 10:08 PM
It is 1:30 pmm. pacific time. Just got back to the hotel for the first time since the surgery began. What a day and night...So the surgery started late (of course) had to make us wait just a little bit longer. 10:37 a.m. First surgeon who did the excising and disecting finished at 3:00. I talked to him around 4 and he told me that 75% of the tongue had to be taken, mostly on the right side all the way to the tip. The tip is gone. Some of the left side was also removed. He also removed a portion of the pharynx and a portion of the right soft palate. Dr. Wang cut to clear margins. They also took 4 nodes but won't know that status until next week from path. Dr. Knott, the reconstructive surgeon this morning was very pleased with the outcome. The doppler sounds from the transplanted vessels and artery are strong so that means blood is flowing ..YEAH! Reg looks like a mack truck smacked him in the face and neck a couple of times. I went to my knees when I first saw him last night in ICU. OMG what has happened... But today is a new day and some of the swelling has subsided although it will return in the next 3 days. He is awake and off the ventilator, breathing on his own. He is responding quite well with the communication board they provide and also the white board that I took to the hospital. He is extremely swollen and black and blue. There for awhile the doc thought they might have to put in a bigger drain since he wasn't draining as well as he should have been, however, since he is off the propophal, his drains are draining better because he is more active in the bed. Also his BP is much better since weaning from the propophal. He is mouthing words even with a tongue 4 times it's normal size.

We have a long way to go but already have been through half the journey. I am positive that Reg is on the road to being cancer free again.

Oh also, there could more rad and chemo in the near future. I think it would be wise. Opinions please.....
Posted By: Bette Re: Can't sleep - 12-06-2012 10:18 PM
I also want everyone to know that I appreciate the concern. We will get through this. And so will all of you. :-)
Posted By: Maria Re: Can't sleep - 12-06-2012 10:24 PM
Hi, Bette
glad that the surgery is done and the doctors are happy! Take care of yourself as well, and be wishes to both of you.
Maria
Posted By: tamvonk Re: Can't sleep - 12-06-2012 11:06 PM
Glad to hear all went as expected . Now it's just the road to recovery.
Don't forget to care for yourself too B�tte . This is an exhausting experience for the caregiver too.
Tammy
Posted By: Bette Re: Can't sleep - 12-07-2012 03:51 AM
7:40 pm - Reg is now getting nutrition through the NG in his nose. Meds are minnimal, however still trying to find good pain management. drains are working full throttle now so not so much blood pooling under his chin. Tonight I sleep. I think he will be okay until the morning. They are getting him up first thing. Night all.
Posted By: tamvonk Re: Can't sleep - 12-07-2012 06:41 AM
Bette, this all sounds great. Do prepare yourself for his face to be very swollen for quite some weeks. Listening to the Doppler blood flow is reassuring isn't it.
This is extensive surgery and sometimes it is 2 steps forward and 1 step backwards.
Hopefully you have had a good nights sleep and are ready to encourage and motivate Reggie as he gets up for the first time. All very positive.
Thinking of you both, Tammy
Posted By: samkl Re: Can't sleep - 12-07-2012 10:20 AM
Bette, I hope as I write this you and Reg are in the middle of a long and very restful sleep. Best wishes, Linda
Posted By: Anne-Marie Re: Can't sleep - 12-07-2012 11:11 AM
So glad to hear that Reggie is doing so well! Hoping that you have been able to get some sleep and care for yourself, too. Best wishes for problem-free recovery.
Posted By: Bette Re: Can't sleep - 12-07-2012 11:13 PM
Friday 12/07/12---REggie got up and walked today. Not far, but out of his room to the hall and back. Sat up in the chair for about 2 hours. His thigh where they took the flap is very painful and is bleeding alot through the dressing. The doc says it's because he had to cut alittle higher, closer to the hip. Reg is very very swollen. Especially the native part of the tongue. You can hardly see his stoma so he is wearing a lary tube to keep the stoma from fallin over on itself. His color is much better today and they finally were able to get the pain under control with fentynol instead of dilaudid. Amen! His vitals are great. They have been giving him some blood because his hemocrit is low. 2 untis last night and 2 this morning.The doppler sounds are strong in the throat. Faint but ledgible in the tongue. Eleccytrolytes are okay now. He was throwing PVC's, but that is under control after mad and potasium. As long as the surgeons and the team are pleased so am I. Taking it hour by hour.It's a beautiful day in the city. Sun is shining, no wind. Have the window open in the hospital room and now in the hotel room. Will update later. :-))
Posted By: Anne-Marie Re: Can't sleep - 12-08-2012 03:46 AM
Sounds like Reggie is making great progress! Good for him! And good for you, too - you are both quite a team!
Posted By: samkl Re: Can't sleep - 12-08-2012 12:22 PM
Bette, it sounds like Reg is in a lot of discomfort, but that's great he's having a spell out of his room. Ask the doctors about avoiding constipation whilst on the pain meds. Best wishes, Linda
Posted By: Bette Re: Can't sleep - 12-08-2012 02:42 PM
Reg is doing well enough that he will be moved from ICU. So probably the foley will come out and the A line. Good cause I know that A line hurts. Tolerating the NG tube and the nutrition well. No blood transfusion since yesterday morning. Hope today goes well.
Posted By: tamvonk Re: Can't sleep - 12-08-2012 05:16 PM
Great progress.
Watch for retention once the foley comes out.
You're doing a fantastic caregiving job.
Tammy
Posted By: Bette Re: Can't sleep - 12-08-2012 11:12 PM
Saturday afternnon. Reg was moved from ICU this morning. That was quite an ordeal. He's down to 1 IV and the NG tube. I am worried about his state of mind right now. He is having difficulty with communication. We are using a white board, but Reg likes to gester more than anything and he tries to mouth words, which before this surgery I had gotten pretty good at understanding him. Now with the tongue so swollen what he's trying to say to me is a mystery. I give him the white board and just pushes it away in frustration. If anyone can speak to this as a caregiver.....

Tammy I will watch his retention, however he is on Lasix so I'm not sure that will be an issue.

I also would like to know if anyone could speak to the next few days as to what to expect. I feel like I'm flying blind.
Posted By: Anne-Marie Re: Can't sleep - 12-09-2012 02:46 AM
Bette - After surgery, my son used a laptop and wrote in BIG letters and turned the laptop around so people could see what he was saying from across the room. Or they would stand next to him, facing the laptop screen. It could work with an iPad, too or something similar to iPad. Paul did get so frustrated with me especially after he came home from the hospital, because I couldn't understand him sometimes. . .I tried reading his lips and finally I told him I was a little deaf and he needed to be patient with me (I really wasn't that deaf) and he was better after that. To communicate, I would try to ask him just yes or no questions so he could reply with thumbs up or down gestures or shrug his shoulders. Or I would give him choices of #1, 2, 3 and he could hold up that many fingers. When his 5-year-old daughter was with us, she got so used to it, she started using our special "sign language", too! Maybe someone could lend you a laptop or an iPad for Reggie? It might be easier to type than to write out stuff. I know it can be so very frustrating. I remember as a child I got laryngitis for about a week and I still remember how depressed and frustrated I was not being able to talk which is nothing compared to what a cancer survivor has to go through! Sure hope things get a little better in the communication area. I don't know about the other issues you mentioned, but I'm sure someone else will be along that can suggest something. From what I've seen of all your caregiving efforts, your "flying blind" is pretty awesome!
Posted By: tina77 Re: Can't sleep - 12-09-2012 03:22 AM
My best friend and I worked out some basic flashcards - pain, itch, tired, bathroom, wash, kleenex, cold, hot.

I found not being able to speak the most frustrating part of the surgery. writing was difficult with one hand in a huge cast from the flap site, and I figured that certain motions (like miming plucking a kleenex) were obvious and it irritated me when people didn't get, especially since kleenex was constant as I was drooling like a drunk.

For me the post surgery went like this:

day 1 - surgery
day 2 - ICU
day 3 transfer to ward - this was hugely painful for me (transport by wheelchair);

day 4 - off morphine pump, to injections of morphine, a lot of injections and medication which made me disoriented and sometimes confused. 1st drain came out

day 5 - 2nd drain out. Catheter out. Some med's reduced, less confused. Physio comes by to get me up and walking and assess the range of motion in shoulders. I was devasted at how little I had.

day 6 - ng tube out (due to allergy), 3rd drain out. I am doing laps around the ward, but very swollen and retaining alot of fluid

day 7 - just walking as much as I could, praying the swelling would reduce. end of day, regular trach out for fenestrated trach, and I immediately start plugging and trying to talk.

Day 8 - last drain out, trach plugged in the am to see if I can go 24 hours without using it. They give me lasic to get rid of the swelling twice, so I basically spent most of the day and night in the bathroom.

Day 9, trach out, doppler out, all iv's out.

Day 10 am discharged.

I was supposed to be in for 2 weeks, but got sprung early.

Hope that elps Bette. I'm send good thoughts to you and Reg.
Posted By: tamvonk Re: Can't sleep - 12-09-2012 08:39 AM
Bette, unfortunately we caregivers do just have fly blind. Take each day as it comes. He should be mobilised out of bed each day and start short walks. Getting into a shower is good for the soul and sitting out in a chair for a couple of hours is very good for the lungs and general recovery. The physiotherapist should also be stopping by to see Reggie.
This is just part of the general recovery process.
Kris communicated with a white board initially and then progressed to using the iPad with the speak It app.
I think that you just have to be patient with him. Encourage him constantly and of course love him to bits.
Tammy
Posted By: Bette Re: Can't sleep - 12-09-2012 05:10 PM
Sunday - They removed the drain from his leg where they took the flap this morning. The team meentioned that he could go home in a couple of days,I don't think they realize we live 4 1/2 hours from the hospital. But it would be nice. I miss my bed. Now that he has a private room I was able to spend the night in the hospital with him. Reggie seems a little depressed and we discussed that last night. Maybe some meds would be a good idea. We will see. But today is football so the day should go by pretty fast. We both enmjoy watching.. Thanks e eryone for your in sight. It is sop helpful.
Posted By: Anne-Marie Re: Can't sleep - 12-10-2012 12:36 AM
Reggie must be continuing to do very well if the team feels he is ready to go home in a couple of days - but a 4 1/2 hour drive - Wow! They must not realize it's that far. It's good that you are able to be with him at night now that he's in a private room. Just your being there might ease his depression a little but it's definitely worth mentioning to the doctor in case there is something that can be prescribed. You are doing such a great caregiving job, Bette - hope the football watching was most enjoyable for both of you!
Posted By: tamvonk Re: Can't sleep - 12-10-2012 07:47 AM
Wow. That seems awful quick. Kris was in hospital for 4 weeks.
Well, Reggie must be healing well with no complications. That is great news.
Do you have a hospital of any sort close by to where you live? This would at least give you some peace of mind if you did run into trouble. We live 2 and a half hours from our treating hospital but I always knew that our local regional hospital was there if we needed it.
I would discuss your concerns with his team Bette.
Yay, home in plenty of time for Christmas.
Tammy
Posted By: Bette Re: Can't sleep - 12-10-2012 11:32 PM
Monday - All is going well. The swelling is beginning to diminish around the incision site. The native tongue is still 4 times the size it should be. Reg is now doing bolus feedings with the NG tube. I spoke with the dietician this moorning and she is on board with getting 2500 calories a day in him and 48 oz of hydration. However, is output isn't that great so they have stopped the IV for now. I think they need to up the lasix to 40 mg. a day. Will speak to the team tonight at rounds. We walked twice today and sat in the chair for awhile. The walking is pretty painful at the site where the flap was harvested. But at least he's up and moving. A pretty uneventful day. I'll take a few of those.
Posted By: ChristineB Re: Can't sleep - 12-11-2012 04:14 AM
Thanks for updating Bette! Glad to hear your husband is coming along. Walking the halls is a very good way for him to break up the monotony as well as get his circulation going. I used to roam the halls with my son telling the nurses I was looking for the exit so I could escape. I really wanted out so bad but was much too sick to even walk to the car to leave. Keep an eye on his pain levels and speak up if he is hurting. Being in pain doesnt help the patient at all.

Best wishes with your husbands continued recovery!
Posted By: Bette Re: Can't sleep - 12-11-2012 05:50 AM
So I have lots of questions for those that have been down the highway of recovery after almost total glossectomy. I'm really worried that Reg will not be able to gain back the ability to eat or drink or speak. These things were already somewhat difficult prior to this surgery.I just would like to know what the recovery steps are coming back from this abyss. How much speech therapy will be needed or has anyone really returned to eating like they used to. What is your taste like now, or isn't there any? Right now I just know what's coming and I hate that. So any and all please post with your experiences and your ups and downs. Thanks....
Posted By: tamvonk Re: Can't sleep - 12-11-2012 06:59 AM
Hi Bette, good to hear Reggies recovery is going well.
Kris started taking fluids orally after 3 weeks. He started off with just 10 mls at a time, delivered with a syringe with a long cannula attached. The idea of this was to deliver the fluid right to the back of his mouth. Initially he wasn't to keen and only did about 3 syringe fulls.
Once we got back home he just started drinking. He puts about 50 mls in a glass so that the glass isn't too full and won't spill on him. He then sort of pours the fluid into his mouth then tips his head back. He then swallows. The speech therapist has no idea how this is done. Within a week he had mastered this. He has continued to drink since then and he has not used his PEG for nutrition at all. Kris will only do Liquids though. He won't try yoghurt, custard, pur�e at all. He says he can not get this to the back of his mouth to swallow. So he lives on smoothies and Fortisips.. He does taste and varies his smoothies to get different tastes. The taste is not as strong as before but he definitely does taste.
After his meals he does a wash out with water to get the residual bit of liquid out.
I have to say Kris is vey self conscious about this process. It has only been recently that I have been able to get him to have a coffee with me when we are out. Of course no one notices anything, but we do pour small volumes into an extra cup for him to swallow.
Recently I have managed to persuade him to swallow all his pills. He was very reluctant initially. Now he swallows them all and we haven't used the PEG for 2 months now. He simply puts the pills as far back in his mouth as he can, drinks and then swallows..
It's all about encouragement, perseverance and little steps.
Hope this helps,
Tammy
Posted By: ChristineB Re: Can't sleep - 12-11-2012 10:27 AM
Bette, look for posts from misskate. She went thru so much and is doing very well with her limitations. Here is a link to her profile where you can view a list of her posts. Hope this helps smile

misskate profile
Posted By: emilyp Re: Can't sleep - 12-11-2012 05:57 PM
Hi Bette, I had about 60% of my oral tongue removed (including a small part of my base and half of the tip). It was probably about 9 days about before I was able to be somewhat understood, but still continued to use the dry erase board for the first 2 weeks. I understand Reggie's frustration, both of my parents need reading glasses yet never seem to have them on hand, so every time I wrote something they were always struggling to read it and would have to scramble to try and a pair of glasses... it was somewhat commical, but very frustrating when you are trying to communicate something quickly!

I was discharged from the hospital after 8 days, but had to stay locally for another week for daily check-ups. Those first few days in the hospital were by far the worst for me out of everything I went through during this ordeal. I would definitely recommend him getting on some anti-depressants, I never had taken any before and kind of felt like I didn't need them because the depression and fear i was feeling were completely rational; however, they helped a lot non-the-less!

Eating took a while to get good at, so you have to be patient. I remember the first several months after surgery I was constantly using my finger to move the food over to the "good" side of my mouth. Every now and then food will still get stuck, however, I feel like I can eat out in public and no one will notice I have any issues eating. I have to eat much much slower, but thats ok.

I know speech functioning and taste is different for everyone. My taste is back nearly 100%, as far as I can tell, and i'd say my speech is around 85%.

Anyway, you and your husband will be in my prayers!
Posted By: Bette Re: Can't sleep - 12-12-2012 01:33 AM
Tuesday - Reg got his drains out today. And is no longer on the IV. Only for pain meds. He got up and walked twice, needs to walk more but the pain in thigh is big!!! The team is going to address that tomorrow with maybe a patch for pain in the leg. Other than that, he's doing great. Tomorrow will be a week since surgery so they will introduce sips of water and ice chips. Let's hope there are no leaks.
Posted By: tina77 Re: Can't sleep - 12-12-2012 06:08 AM
Good news Bette, seems like he is totally on track. Yep the thigh was super painful and burned...go figure with all the rest of the stuff!

Thanks for keeping us posted, and I hope you are doing as well as he is.
Posted By: Bette Re: Can't sleep - 12-13-2012 04:34 AM
Wednesday- Not too much happened today. Reg is walking more and sat up in the chair most of the day. The pain in the leg after walking is pretty intense so the exercise is brief. He is tolerating the tube feeds well, however, He has alot of residual after 4 hours when it is time for another feeding. At 5 hours he is empty so I have requested they up the calories per feed and reduce by 1 per day. The team and the surgeons were in surgery all day so saw them this a.m. Doppler sounds are strong and began introducing sips of water and ice chips. Ice chips went well but the water through the straw failed. Reg can't suck... He tried drinking from the cup but the tongue is still very swollen and he can't tilt his head back very far so we will try again tomorrow. I think that Friday he may be discharged since there was little success with the liquids today. Hopefully we will know the pathology results tomorrow. That will help with the healing as well. It's turned cold in the city with some rain, but I'm enjoying the change. Thanks eeveryone for the support.
Posted By: Anne-Marie Re: Can't sleep - 12-13-2012 11:36 AM
Sounds like good, steady progress, Bette - You really are on top of things. All this great caregiving I'm sure is a large part of Reggie's progress! Remember to take care of you, too.
Posted By: tamvonk Re: Can't sleep - 12-15-2012 12:07 AM
Hi Bette, how are things going?
Is Reggie nearly ready for discharge?
How is he progressing with his oral intake? Kris can't suck either it's not a biggie.
Did you get the pathology results?
Thinking of you both,
Tammy
Posted By: Bette Re: Can't sleep - 12-16-2012 10:25 AM
Sunday -
Well what a whirlwind of a couple of days. On Friday morning the docs said Reg could go home. Yeah! After all sorts of things (medical equip.) being delivered to the hospital to take home with us, he was finally discharged at 4:30 pm. I don't drive well at night so we thought it best to stay at the hotel one more night. That went Okay. Reg slept most of the nght and then we drove home on Saturday. Of course it's alot of work caring for him, but that's okay, I don't mind.The leg area where they took the tissue is really bothering him and now his right leg is giving him fits as well so walking is pretty difficult. He live in a 2 story home and the stairs are a challenge for Reg. We have to return to the city on Wednesday for a swallow study and then once a week for a month. Other than that...the swelling is still pretty bad and of course the bruising. The tongue is also still quite swollen. Reg is trying to get water in his mouth with little success. The ice chips are okay but he has become sensitive to the cold. I'm really scared that he may never swallow again. He says it all feels pretty numb and that he can't tell if he's swallowing or not. I keep telling just to swallow for practice but he can't tell. So I'd say he's not. Anyone have any ideas?
Posted By: Bette Re: Can't sleep - 01-07-2013 05:21 AM
I want everyone to know that Regie passed away on Thursday morning in his sleep. His courageous battle has ended and he with God. I will love him forever.
Posted By: tamvonk Re: Can't sleep - 01-07-2013 07:27 AM
So Sorry Bette. I have replied to your other post.
Look after yourself now. Reggie is no longer suffering.
Tammy
Posted By: Anne-Marie Re: Can't sleep - 01-07-2013 10:08 AM
So sorry to hear about Reggie. He seemed to be making such good progress with your loving care and attention to all his needs. I hope that in the days to come, there will be moments of peace and comfort for you and your family as you share some of the happier memories you have of your life with Reggie.
Posted By: PaulB Re: Can't sleep - 01-07-2013 03:43 PM
I'm sorry for your loss of your husband, Reggie.
Posted By: Cheryld Re: Can't sleep - 01-07-2013 04:43 PM
I am so sorry. My condolences. He seemed to be getting so much better. frown
Posted By: David2 Re: Can't sleep - 01-11-2013 01:56 AM

Bette, please accept my deepest sympathy for your loss. You were the finest of mates and did everything you could. My thoughts are with you.
© Oral Cancer Support - Survivor / Patient Forum