Hi Everyone,

So my mom has decided to pursue surgery for treating her cancer. I need help understanding what to expect from others who have been caregivers or experienced the surgery themselves. Our pre-op appointment with the ENT surgeon is on Friday and the next pre-op with the plastic surgeon is on Monday. What sorts of questions should I be asking? What does the immediate recovery look like? They said approximately 7 days in ICU. Then what? Will she be transferred to another floor of the hospital? Another facility?

I'm trying to prepare myself and plan ahead. I'm also a student trying to finish school and her only care giver in this state. Family is coming in for a few days during her surgery and then leaving. They're asking me about when would be the best time for them to be here to help me - and I don't know how to answer that questions.

Any feedback would be great. Thank you!

Hey Nay!

This can be scary stuff, trust me I know sister, but that's why OCF's forums are here!

Mandiblectomies are "big" surgeries typically and recovery is not easy, but it's doable. Immediate recovery after that surgery is fricken rough, everything hurt, so make sure to stick the pain meds. Pain is the enemy of healing, it puts the body in distress and slows the healing process...so make sure she's taken care of there and not trying to tough anything out.

You're going to need help when she comes home, the first week out was a tough one for us and we were thankful to have family to help. Typically after a few days in ICU then they move you to another floor (they did me) and I was in 8 days overall, then had to stay close for a month, which was tough. Movement with the leg is going to be rough and she'll be weak so she may even need help going to the bathroom the first week home.

It's good you are planning now, get all the help you can that week, gets better after that.

Let me know if I can be of any further help, and don't let yourself get overwhelmed with it all...make sure to plug into these forums and the amazing caregivers for support!

Eric

While she is in the hospital, your Mom will be well taken care of. You and your Mom will need the most help when your Mom returns home. Can your family members stagger their visits so that you can continue your classes? Ask that each one take a week to be with your Mom at her home. By the third or fourth week, things will have improved and the pressure wil be off you somewhat. I also think your Mom will have a visiting nurse come to her home twice a week for 4 to 6 weeks. The nurse will teach each person what they will be doing to help your Mom.

Family members need to know that this is not going to be a cheery visit but a week when they will be making a huge contribution to both you and your Mom. It is the ultimate gift! Most patients having this surgery do not enjoy visits to the hospital by well-meaning friends and family.

Since you have taken on the roll as your Mom's advocate, please delegate some of her home care to the others in the family. Caregiving is a huge job. See if you can lighten the load by enlisting family to really step up and help. They can prepare meals for you, too. You have to take care of yourself now, too.

If this does not work out, as a last straw you might consider taking an incomplete for this semester and return to school in the fall.

Don't be afraid to tell family that you need them now and they have to help. You cannot do this alone. I know you will work this out. Your Mom is lucky to have you in her corner.

My best to you�
Anita

A mandibulectomy is a huge operation! There are many things that can change the current treatment plan. She could end up being in the hospital for about 2 weeks or it could get stretched out to several weeks depending on how she does.

Yes she will be well taken care of while in the hospital but I still would recommend to have someone stay with her if at all possible. While in ICU, she may not be allowed visitors. Most of the time she is in the hospital she will be sleeping so wont even know if company is there. Plus when she comes home she probably wont even remember they were there. I would suggest having the family wait until she is home until they visit. Im sure they mean well but its a huge surgery and your mother wont be feeling up to having company for a while. Even then it will not be a vacation, your mother will need help. She will probably have a visiting nurse for at least the first month or 2 when she comes home. This is something to ask for when she is beginning to get ready to make plans to get sent home.

As a caregiver for someone having a mandibulectomy, the first month at home will be the hardest. Since you are a full time student, it wont be easy but you will be able to do it. If the out of town family wants to visit, I would suggest having them come at this time, plan for one month after she is due to be discharged as the best time for them to come. So thats about 6 weeks after surgery. This way they will be able to help you care for your mother and she will be up and about and be able to enjoy the company.

My son helped me while I was recovering. He left for the Marines only 3 weeks after I was discharged which made things pretty difficult. It took me a full year to recover from that surgery, but my situation was much different.... I had complications both with the surgery and my recovery. Not many have the kinds of complications I went thru.

As far as swelling, her jaw/face area will be pretty swollen for the first couple weeks. She will still look like herself. It can take a couple months for the swelling to completely subside. Some people barely have any swelling as their surgery isnt that involved. Alot depends on how invasive the surgery will be. If her doctors will be using part of her leg bone there could be other areas to heal besides her jaw.

Best wishes with everything!!!

Best to supply her with a way of communicating while in the hospital I am not sure how compromised she will be but maybe a tablet, and or a pen and paper. best of luck to her. Hugs and blessings coming your way.

Thank you everyone, this is helpful.

@EricS - thank you about the note about the pain factor and the pain meds. My mom used to be a doctor (stopped practicing 30 years ago, after she immigrated here) and so she over-analyzes every medication that she is taking, every step in the treatment process. I understand that its a good thing to think through her treatment/process but this also puts her in the position where she second guesses her doctors. She will also be the type to try and though it out.

@AnitaFrances - Thank you for that note. I'm not sure where the help at home is going to be coming from. She is on medicare. Does that mean we can hire a nurse or does the hospital assign us one? Navigating through the medical system here is like living in a new country and having to learn the culture and the language all over.

- When she is released to come home, she lives on the second floor of an apartment building with NO elevators. Clearly, it sounds like this is going to be a problem. In that event, I heard that there were nursing facilities/homes that she could temporarily be transferred to. Has anyone taken this route? She also lives with four cats. Is that a problem? Health wise? At least its a small place so movement from the bedroom to the bathroom is a short walk.

@ChristinaB- Thank you about mentioning the first 6 weeks. I'm working on getting family to stagger their visits. My mom has had a lot of complications with her chemo and I suspect recovery may present similar challenges if her luck is the same (hoping it wont be the case but preparing for the worst). The Drs said the same thing, that recover is about a year long process. What does that mean exactly? ... Yes, her doctors are using a part of her leg to reconstruct her jaw.

@CherlyD - I was just thinking the same thing (about getting her a tablet). Thank you for saying that. I figured it would help entertain her and allow her a means to communicate.

Nay,

The year of recovery is just that, recovering and adapting to the new normal. Swelling is a huge issue for months afterwards, as is pain, limited movement and proper nutrition. I don't see where she's had radiation listed in your signature, if she hasn't that will help in the healing process, but I'm not sure I understand why she hasn't? No lymph involvement?

Her diagnosis is very similar to mine (which is rare) and I had the benefit of being 32 years younger at time of diagnosis. After my mandiblectomy I was unable to walk stairs (I could crawl up) and was stuck to my walker for weeks. The opiates where needed, also have side effects that will slow her down (they depress the central nervous system, slowing the cardiovascular system, which affects her circulation, energy levels, even will make her cold especially the extremities among other issues), so she's going to need care.

If she's on Medicaid or Medicare she'll have rehab options in a care facility. My wife is the Director of Social Services at a Health and Rehab facility in our state and will be knowledgeable in that department, let me ask her about it and I can get back to you if you want. I think they have like 20 some odd days if I'm not mistaken.

Just going to put this out there. Cats are great and a terrific source of company but if your on chemo or post surgery she should be careful particularly with litter boxes etc...

Nay,

The following is a link for an article which has 3 places that will help by providing free housecleaning services for women going thru cancer treatments. This may be something to look into and get set up for her while she is recovering.

Houseclening help for cancer patients


Being on pain meds is a given with this type of major surgery. Hurting will NOT help the patient at all, it will hinder her recovery. This has been proven thru studies.

If she will be getting a trach ask specifically for a possey muir valve trach. This will allow her to speak even with having the trach.

I dont know about if medicare allows for a visiting nurse but I hope they will. This would be very helpful in watching her wounds by changing the dressings and making sure everything is ok. Even if they will allow 2 times a week for the first month, it would be a huge help.

I hope the family will be ok with waiting to visit until your mother is up to enjoying their arrival. By waiting 6 weeks, she should be home and hopefully doing ok by then.

Best wishes with everything!!!

Nay, best wishes to your mum during this time.

Cheryl: I think getting a cat during this time would be a really bad idea. Nay�s mom will be requiring a great deal of assistance. On top of everything else, if she is having bone removed from her leg for mandible reconstruction she will be having difficulty walking for several weeks. This is a huge operation that takes a long time to recover from. Animals are wonderful, however a new pet during this time would be extra work. Creating additional work for her and her carers at this time is crazy.

Karen