Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
tlc356 #197875 02-17-2019 09:36 AM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
They told us he shouldn’t drink or use mouthwash with alcohol before the surgery. If he can’t have alcohol, so be it. He got several bottles of champagne as retirement gifts. I guess we can always take a bath in the stuff once the cast is off. Or we have hostess gifts for the next several years.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197876 02-17-2019 01:15 PM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
After the surgery, alcohol burns. After radiation, alcohol burns. I'm not a drinker so I can't speak to the differences between beer or wine or champagne or anything like that, but even medications with alcohol burn, so I can attest to that. Heck, even mint burns my mouth, but then that may be the radiation. So it's not entirely about the damage it can do, but also about what he might be able to tolerate after. That'd be something to ask the doctors, and maybe whoever here who actually knows about drinks can tell you if champagne is okay.

The nerve cutting can be ... weird. I suppose it can come out different for everyone. My surgeon said he didn't cut mine, but he must have dinged it (he admits this) because I do have damage. It caused a weird numbness on that side. (Once it healed, of course.) Not pain. Collars feel weird when they rub against it. The closest I can explain is like when your skin gets too cold in winter, and everything that bumps it just feels ... off ... somehow. You know what it *should* feel like, but it's wrong. It's irritating, but you get used to it. I don't know if it's the same for everyone, of course. (That would make an interesting poll, I suppose.) And ask about treatment after ... I find that (thanks to tips from a therapist after radiation) massage on my neck, just at-home stuff, helps unclog a lot of sinus issues ... who knew how much those lymph nodes were responsible for? Yes, we can do without them, but wow, they are sure under-appreciated! (I use those massage techniques on my healthy husband when he's got a bad cold, and even he attests to how it helps the drainage!) Not something to fret about yet, just something for down the road.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #197878 02-17-2019 05:05 PM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
Thanks so much for all the responses I have gotten. It really helps to connect with people who have been through this.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197884 02-20-2019 09:58 AM
Joined: Sep 2018
Posts: 71
Likes: 1
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2018
Posts: 71
Likes: 1
Hello and sorry for your husband's diagnosis. Oral cancer is no fun but we all get through it. I'm still in the 'getting through it phase' but I have a majority of it behind me.

My suggestion is: get him a dry erase board and a few markers for after surgery. He will have a difficult time speaking and it is FRUSTRATING to not be able to communicate. I used mine after surgery and then off and on throughout my recovery and even some during radiation. I also texted what I needed to say a lot as well.

Good luck with surgery!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
VirgoMomof3Boys #197891 02-21-2019 08:20 PM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
Thank you so much. Surgery is scheduled for next week.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197913 03-01-2019 08:13 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Barbara! Ive been following your posts since you joined OCF. Our members have welcomed you with open arms and given you some excellent advice so far. Your husbands surgery was scheduled for the 28th. Im checking in to see how you both are making out. Being a caregiver is not an easy job! Im sure you have the weight of the world on your shoulders right now. Just remember, you arent alone with this, we are here to help and to lean on when you feel overwhelmed.

Mandibulectomies can be very long and involved surgeries. Ive had a mandibulectomy and completely understand how difficult that kind of surgery can be. Your husband will probably be like most of us who have had this surgery and not remember much of his time in the hospital. Dont be surprised if your husbands docs keep him medically sedated so he sleeps for a few days to give his body a chance to start healing. Its actually a good thing to sleep thru the first few days after this major surgery.

If your husband is in alot of pain ask his docs to prescribe at least 2 different pain medications so he wont have to wait for the right time before he is allowed to have his pain meds. With 2 options he can switch them on and off to make his pain levels remain lower and more stabilized. At least thats what I found worked the best for me. If you have friends and relatives that want to visit your husband try to stagger their visits and maybe they wouldnt mind hanging around for a few hours to give you a break to catch your breath or to take care of other responsibilities. If possible having someone stay there with your husband 24/7 especially if his speech is not clear or if he is in alot of pain. Almost all hospitals will have no overnight visitors rules. You should still ask if you want to stay there with your hubby, many times the nurses will allow someone to stay even though its against the hospitals rules.

Wishing both you and your hubby all the very best. Im hoping all has been going smoothly and Im looking forward to hearing your update.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #197914 03-02-2019 02:54 AM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
Thank you to everyone who reached out. The surgery went very well. He is doing fine so far. He actually spent a lot of time in a chair yesterday which was very good for one day post-op. We should get the pathology reports in 7-10 days.

He had an iPad in the post-anasthesia care unit, and now has an iPad and dry erase board on the Head and Neck floor. Not ideal, but it works.

I expected him to be out of it all day yesterday but he was wide awake. This was especially surprising because they have been coming in every hour to check the flap so he didn’t get a lot of sleep.

He didn’t get up to his room until late yesterday afternoon (surgery was Wednesday). He does have a roommate and there is not a lot of space in the room but I will be staying there as much as possible.

He says he is not in a lot of pain, but has pain meds ordered as needed.

Thank you to everyone for all of the support and helpful information. I am grateful for every bit.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197915 03-02-2019 06:31 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Barbara, thanks for your update!!! Sounds to me like your husband is doing very well, much better than most who have this kind of surgery. Im really surprised he was able to sit in a chair already and isnt in much pain or uncomfortable. Thats excellent progress!!! Your husbands positive update is a perfect example of the everybody's different phrase I use frequently around here. All patients will respond in their own unique way to medications, medical procedures, etc. Sometimes after surgeries patients arent feeling too bad due to being given extra pain meds as the surgery is just about finished. For me, it isnt the surgery day that I would feel my worst, almost always the next day after a surgery is the hardest one. Hopefully your husband will continue to make steady improvements in his recovery and also remain tolerant to any post-surgery pain or complications. It also sounds to me like the hospital staff is on the ball and is taking very good care of your husband.

Im glad to hear you are there with your husband as much as you can be. Having someone there helps patients stay positive and they wont have to struggle trying to interact with hospital staff. From everything you've written, you are doing an excellent job taking care of your husband. I hope you are also (on top of the other million things you are responsible for) remembering to take some time for you here and there. Caregivers are wonderful and do such a difficult job of juggle everything they normally do plus being the voice for their loved one. Caregivers can and do get burned out which is why I always mention making some time to care for yourself. Even 10 minutes can give caregivers a chance to catch their breath.

Please keep us posted on how you and your husband are making out. Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #197918 03-02-2019 08:30 PM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
Thank you, Christine. As you said, day 2 is harder. He is using more pain meds, and the tube feeds have given him nausea. So far, he has only needed one dose of reglan for the nausea. He is uncomfortable when they suction the trach. He was able to walk a little bit with the walker today. Psychologically, it is tougher today also.

We have been blessed with a relative who is putting us up only a mile from the hospital. Tonight some friends stayed with my husband and i went back to get my meds and a change of clothes so i can stay the night. I don’t want him to be alone when he is so uncomfortable. The care here has been excellent and the nurses have been fabulous.

Thank you so much for all of the information and support i have gotten from you and everyone here.

Barbara


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197948 03-07-2019 05:09 PM
Joined: Jan 2019
Posts: 22
Member
OP Offline
Member

Joined: Jan 2019
Posts: 22
My husband is doing well and is expected to be discharged tomorrow-8 days post-surgery. We will stay in town a few weeks for follow up appointments before heading home. He is still pretty swollen and has the stitches from the neck dissection and wearing a boot on his lower leg. I am not clear on whether they took a salivary gland. The Fellow says they did, but the nurse told me that that is not in the surgery report. I will ask again at the follow-up visit.

We are still waiting for the final pathology report to see if any more treatment will be required.

I can’t thank everyone in this group for all of the information and support you have given us.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5