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Joined: Oct 2015
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Quin Offline OP
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Joined: Oct 2015
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Greetings all.
I've been reading both new & old posts for the past couple of days - it was rather overwhelming at first! Of course, my issue could be due to the PTSD of returning to the 'land of treatment' rather than to all of the available information that the forums participants have shared. In any event, I feel very fortunate to have found this site.

My husband, Ross, is scheduled for Mandibulectomy & Fibula Free Flap Reconstruction surgery at the beginning of December. His pre op appointments are in a couple of weeks and I'm sure that the surgery information binder will come home with him at that time. Until then, I've done a little digging and found Sloan Kettering's handout on line for this procedure.

My Question: Would you guys have any suggestions that you would care to share about this kind of (horribly invasive) surgery? A few of the forum poster's suggestions that I've noted pertained to pain relief (alternating between 2 different kinds for extra pain coverage), Trach (I forgot the name of the one that may permit some level of talking) & PEG tubes. Average amount of weight loss to expect? Questions that I don't realize that I should be asking?

Anything and everything that you would care to share would be of great value to me. Ross is uninterested in reading about this next surgery. His focus is on making it through. I'm the one having to become prepared for his after care. I'm not certain that I have the level of expertise needed to handle a PEG & trach tube(s).

[He had a NG tube back in 2008 that I fed him through after he was released from treatment. (His weight plummeted from 165 to 108.) Currently he has zero saliva, his esophagus is 75% occluded & weighs 143 lbs]

I realize that our situation is a walk in the park compared to those forum warriors experiences that have posted here. Thanking you in advance. Valerie



CG to Ross: 69, NS, Social drinker, HPV +
Dx: SCC 4/08; StageIV Throat Cancer.
Tx: 3x Cisplatin + 5FU; 40 days XRT
Met: 12/10 R lung: 2 lobes removed
Met: 8/12 L lung: 1lobe removed; lung collapsed
Dx: 4/15 - 8/15 jaw infection; CT, MRI, Augmentin
Tx: 35 HBOT
Dx: 08/15/15 ONJ lower left & lower right TM joint, impacted wisdom tooth
Tx: 09/8/15 Impacted tooth & osteonecrotic bone removal
Dx: 09/15/15 Lower left/Jaw fracture
Dx: 12/7/15 Mandibulectomy & Fibula Free Flap Reconstruction
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF. Its sounds like you have your hands full but you are handling it very well and are on top of everything. Im so glad you have found our forum. We can help you and your husband with info and support.

Ask specifically for a possey muir valve trach. This type makes talking easier. Hopefully the trach will be removed before your husband leaves the hospital. Also ask about the availability of a visiting nurse to help manage his after hospital care. Many facilities offer this to patients. Sometimes you need to ask, or they dont automatically offer it. The feeding tube definitely qualifies for visiting nurse visits as Ive had this myself. To me, the feeding tube is much easier to care for than the trach. Hopefully the hospital will be able to provide a visiting nurse to help you.

A dry erase board, cell phone, tablet or ipad can help him communicate if your husband isnt able to talk.

The mandibulectomy is a major operation. Expect your husband to be in the hospital for at least 7-10 days, but more likely around 2 weeks if all goes well. Make sure to have someone there with him as much as you possibly can. Even if he is only sleeping, he should have someone there to be his advocate. He may not be able to talk and waking up from this major surgery he probably will be in alot of pain. Any friends or family members who ask what they can do to help, take down their numbers and when they are available. Tell them when the time comes you will let them know. Maybe you could assign each person a 4-6 hour "shift" on the same day of the week at the hospital or even when he first weeks at home so you can get a break once in a while. Its not easy being a caregiver or running back and forth to the hospital all the time. This would also help your husband to stay mentally active by interacting with a few people and hopefully help to keep his spirits up.

Being a caregiver is a difficult job. Be good to yourself so you dont get burned out and can remain on top of 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
Joined: Oct 2015
Posts: 3
Quin Offline OP
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Joined: Oct 2015
Posts: 3
Thanks for the reply, Christine.
There are/have been so many stories on this Board - I am humbled by the resilience of those who have (and continue to) share(d). Truly, cancer is a disease that knows no bounds.

The panic mode that I hit last week has subsided. I finally figured out the trigger (1st husbands death due to a hip replacement gone wrong & my feelings of responsibility. He didn't make it out of the 9 day ICU stay.) Thank heavens for mental health providers. I will resume this week. So as you may surmise, a little PTSD certainly goes a long, long way.

Thank you for your suggestions regarding communication devices & overall procedure info. My fear is that he will be in an inordinate amount of pain and unable to tell me/anyone. His jaw will be wired closed & he will be trached. (The purpose of the latter is due to the 75% occluded esophagus to allow the blood seeping into the stomach from the surgery to be emptied.) Maybe this is normal operating procedure for everyone?

I'll be with him at the hospital until he is released.

Last week I spoke to a home health outfit in our area which can provide hourly or day/night services. Locating a step down facility is next on my list, in case Cleveland releases him but he requires additional care than I am able to provide. (We live 4 1/2 hours from where Ross gets treatment - I would guess that they may not have a suggestion for local care in our city.)

Feeling overwhelmed seems to be a daily occurrence. I appreciate these Boards. By responding to other posters questions - at least we feel as though we can be useful and supportive.

Thank you again for your response. Valerie


CG to Ross: 69, NS, Social drinker, HPV +
Dx: SCC 4/08; StageIV Throat Cancer.
Tx: 3x Cisplatin + 5FU; 40 days XRT
Met: 12/10 R lung: 2 lobes removed
Met: 8/12 L lung: 1lobe removed; lung collapsed
Dx: 4/15 - 8/15 jaw infection; CT, MRI, Augmentin
Tx: 35 HBOT
Dx: 08/15/15 ONJ lower left & lower right TM joint, impacted wisdom tooth
Tx: 09/8/15 Impacted tooth & osteonecrotic bone removal
Dx: 09/15/15 Lower left/Jaw fracture
Dx: 12/7/15 Mandibulectomy & Fibula Free Flap Reconstruction

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