I am a caregiver to my husband who had cancer of the soft palate, radiation & chemo two yrs ago, recurrence in the tongue and lyphnodes, three surgeries including left radical neck dissection, 3 sets of chemo, starting with induction and then round two tried Erbitux but he was severely allergic. The latest ct scan revealed cancer in the floor of the mouth and the jaw bone in the front. So surgery is his only option now and he is schedule for a mandilectomy of the front jaw with resconstruction from his leg. I have pretty much been a solid rock through all of these treatments in the past one yr and a half. Now with the impending surgery I'm internally freaking out. I work full time and his parents are elderly and not in great health. I have little support here locally from family. So I am trying to figure out how best to make his recovery successful, how much to plan to be out of work (I have vacation time available) and when to have visitors. Honestly the thought of visitors in our home during recovery feels like additional responsibility vs. help. So my main questions are when should I ask the parents to be here? I have a very dear Aunt whose said she would come up and sit with me during surgery and stay in a hotel room. My uncle passed away from this disease and she understands what I need. If I understood better what to expect, I would be less freaked out.

Welcome to OCF! Im so glad you have found this group to help you thru this. You have a long road ahead with your husbands upcoming mandibulectomy. You are the third person Ive been in touch with this week about their spouse getting a mandibulectomy. Ive been thru this myself so I know firsthand all the ins and outs of this procedure.

You mentioned your husband has been ill with OC for 1 1/2 years. Exactly where was his other cancer? How far from where this one is? Radiation was done to what area? Was it to the exact same area that he will have the upcoming surgery? You probably think Im being too picky asking these questions. Im curious about the exact location of his previous radiation as it could impact the surgery. Are his doctors the same ones who have treated him before?

Your husband is unlikely to remember much of his hospital stay. he should be on some heavy duty pain meds and could be kept asleep for a day or more after the surgery. This is a major surgery, 10+ hours. The hospital stay could be anywhere from about 10 days to 3 or 4 weeks. During his hospital stay, he should have someone with him as much as possible. He will need someone there to advocate for him. Make certain the doctors give him 2 different types of pain meds and that he can have them as needed. If there are 2 different meds available if its too early for the next dose of one he can still have the other medicine to ease the pain. He may need a trach, if so ask for a possey muir vavle trach so when he wakes up he will be able to talk easier.

The recovery can be very long from a mandibulectomy, especially when the leg is also healing. Swelling will be significant for the first few weeks. A complete recovery will be full of ups and downs, its very frustrating for the patient. If further reconstruction is needed, it will not be done until at least one full year after the initial surgery. It takes that long for everything to heal sufficiently and the swelling to be completely gone. Make sure your husband understands that he may look different. Taking several up close photos of every possible angle could be helpful down the road if he needs any additional reconstruction.

Do you have children that need your attention? Like you, Im wondering about having the extra responsibility of having so many people around during the surgery and recovery. Im sure your husbands parents would want to be there for him.

Im sure there are a million other things I can tell you but its very late. I will think of more info and pass it along.

Best wishes with everything!

Hello Missy:
Welcome to the family. It's big and all of us share the one thing you are here for - oral cancer. Here you will find the quality support you need both from patients who have gone through it before you and from other caregivers who have helped a loved one through the journey.

Christine gave you some really good advice in the previous thread. She has been through this herself, so she knows of what she speaks. I expect as time goes on others who have also had the same surgery will comment too.

I am going to address what you wrote from a different angle. I understand you freaking out right now, you have just been hit in the face by the fury of Niagara Falls. That would knock anyone for a loop just as it did you. But, you have also had the opportunity to step out of the main stream into calmer water and to start thinking about what needs to happen first, what comes second etc, etc. I'm sure your list has at least 100 items on it right now. I think it's the quantity of items that are freaking you out, not the difficulty of handling each one individually.

Over the last year or so you have actually been handling these types of things already, albeit just on a smaller scale. They arrived at your door one or two at a time, which you found manageable, not 30 to 50 at a time which you THINK is unmanageable. You already know this, but big problems are really just the sum of a lot of small problems and they are solved the same way - one small problem at a time - one or two per day the same as you've been doing over the long term

So, take a giant step back and a deep breath. You are actually doing better than you think. You had the presence of mind to seek help and you found the right place to ask. Your new family is very good at giving the support you seek. The rest is just grinding out the solutions, one problem at a time, one day at a time. A year from now you will be in a position to help others get through their journey.

An adult beverage at night before bed might not hurt either.

Take care, ask us your questions, there are no taboo subjects.

Tony

My husband's radiation was done on the soft palate but the field included parts of the neck. When he had the radical neck dissection it took longer to heal and the skin is like a "tree trunk" His teeth were ruined and they will be removing all of his bottom teeth. There are currently no plans for a second reconstructive surgery. the surgeon told him his jaw would look like Jay Leno's. Good idea about the photos. I will take lots. He will have a trach while in the hospital. He still has his speech, albeit a bit garbled, but I'm not sure if he will have any speech after this surgery. We don't have kids, but we do have two large dogs that are very much a part of our family. Would you recommend that I have his parents come for the surgery and while he's in the hospital? There is a hotel on the property of the hospital that has shuttle service to the hospital and is an efficiency type set up. Do you think I will need more help when we get home? I am pretty confident my insurance will pay for home health as long as the Dr. orders it. I can handle most medical things...and not afraid to try either. I just want to be as prepared as we can be in a situation like this and I find if I adjust my expectations then I will make it through one day at a time...as we all do.

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Thank you!

Your husband will need someone to be with him while he is in the hospital, even if he is asleep. Most of his hospital stay he will not remember. Someone should be there to speak up for him when he is out of it.

Make sure to ask for a possey muir valve trach. Your husband may have a visiting nurse come to your home after this surgery depending on what his condition is when he is sent home. Many patients will step down from the hospital to a rehab facility before going home. This would be a very good idea. He still should have someone there to advocate for him.

When he comes home he will need help with most daily living tasks. He will need help setting up his feedings. If he doesnt have a feeding pump, ask for one. This can run slowly while he sleeps making it easier to get all the necessary nutrition in. Just be sure to prop him up on a few pillows. He will need PT to work both his leg and jaw. Maybe that can be done in the home? I had a PT come to my home when I first came home from the hospital.

Im not sure what the parents or aunt will do to help. Thats something you will need to take charge of and give them tasks to keep them feeling needed. Not sure if you will need a home health aide???? It all depends on how his surgery goes and what kind of condition your husband is in when he returns home. Just remember.... everyone is different and will respond in their own way. I came home in very bad shape from the hospital and my son was able to help me. My situation is different than your husbands, I had some major complications with my mandibulectomy and it had to be redone. This is NOT common so please dont worry! Most patients will sail right thru it and in about 2 weeks they are home and doing amazingly well.

What about hyperbaric oxygen therapy (HBO) prior to teeth removal? This is very important to avoid far larger issues down the road. Have the doctors discussed HBO with you? Is the mandibulectomy on the radical neck dissection side? If so there could be delayed healing there. HBO helps with that as well.

I would be surprised if the docs discussed reconstructive surgery already. Just remember it can be done after one year. No matter how things turn out it can be changed, so the Jay Leno chin.... that can be altered. If there is one thing Ive learned since my OC battles, looks dont mean one thing....the person inside is still the same no matter what happens outside and no one can change that.

I asked about HBO and they said he didn't need it because the teeth would be removed during surgery? not sure I understand that. The jaw removal is in the front and will overlap some with the left neck dissection. So what I'm taking away so far is that he will need family on deck 100% while he's in the hospital whether or not he knows we are there to make sure his needs are met...totally get it. Now I'm trying to figure out if I will need help of family once we are home in addition to home health care. I'm trying to balance having help, with stress of feeling like I need to attend to "house guests"

I imagine your house guests will realize the gravity of the situation and not need much attending too. In fact, they will likely be attending to you (as well as your husband) instead of you having to attend to them.

As I said before, take a deep breath, and relax. This is all going to work out okay, one day at a time. You are still trying to worry about tomorrow's, next weeks and even next month's problems today. All that will do is keep you stressed out and give you premature gray hair. Worry about today's problems today. Let tomorrow's problems wait, until tomorrow.

Tony

Im very sorry to give you this info and second guess what the physicians have told you. But this is VERY important!!! It does not matter how the teeth are removed. It still puts his jaw at risk or osteradionecrosis (ORN). Take a look at the links with info about both HBO and ORN.


HBO Info

Osteoradionecrosis (ORN) Info

If he's having a mandiblectomy... and the teeth are being removed with the jaw.. then that's fine. HBO helps with the healing of the area by bringing 02 into the area to promote healing - which is often compromised by rads. Removal of the teeth from a radiated jaw that is going to stay in the mouth is bad news at the best of times so if they are removing teeth from anywhere else that isn't being reconstructed - it could cause more necrosis of the jaw and possibly an even bigger surgery later.

Is he being treated at a CCC? Whenever I hear a variance in normal treatment I usually ask this because CCC's tend to stick to what is most effective and what works. I am not sure, but by the sounds of it he only had radiation and chemo for his palate, which is not common place. Usually (from what I have read here) they remove the palate or part of the palate and may then follow up with rads. Again with the tongue, neck dissection etc... normally an experienced ENT, will go in do one surgery remove all effected areas, and even clean nodes just to be on the safe side - then do rads and chemo if necessary.

Mind you that is done and over with and now you are facing another daunting surgery - I just bring it up because maybe you should get a second opinion at a CCC if you are not at one. They may still give you the same surgical option - but may do some things differently.

Though their main concern right now is probably cancer - not the potential for jaw necrosis, it should be taken into consideration to prevent what may possibly lead to another surgery.

Maybe your reaction this time is based in fear perhaps not of the surgery (though it is quite involved) but the fact that this is a third recurrence and that in and of itself is terrifying. It's kind of like running a marathon and hoping to get in front of the lead runner but slowly falling behind.

With regards to having guests. you state your inlaws are not in great health. As a parent I would understand their need or desire to be there. If this is possible without making more work for you then I would let them come. However if they are staying with you and need to be cared for - I would maybe see if he has a sibling who would be willing to come and support them while they visit, you clearly have enough on your plate. If they are capable of caring for themselves then it may be a help to have them there. As christine stated the first few days out of surgery can be rocky. This surgery in particular can have a few setbacks particularly with his history of prior treatment. Maybe if they can do a day shift of sitting with him and you can go in after work, and save your vacation time for when he is released. Run this by him and them and see. By all means take the time off the first few days of course, but his stay may be fairly long and usually its the first few days where the most can go wrong - after that it's just healing time. Once he's out of the woods, then saving your vacation time for when he's home may be best. Home care is very dependent on your insurance and what your government allots for (I'm canadian - we have a certain amount of homecare available to us via the government). Call them explain the situation and see what they can do for you. I doubt they would provide a long term in home nursing service. But they may allow a few visits daily to change dressings, help with feeds, and do any other nursing care needed.

As for having people in your home - i hear you - there is a certain amount of responsibility to having someone there. I would suggest determining based on who offers. You know what your friends and family are like. If you get an offer from someone who is fairly self sufficient and really will be more of a help than not, then let them join you... otherwise keep their visits confined to the hospital. It will help break up a long day for your hubby.

best of luck... and welcome. (ps a trache SUCKS!) he will need something to communicate with... pen/paper, ipad, tablet, computer... something. Until he can speak again. hugs and take care.