Hi,

I am so happy to have found a place where I can talk to others. My mom was diagnosed with squamous cell carcinoma in her jaw 2 months ago. 3 weeks ago she had a 14 hr surgery to remove & reconstruct 1/2 of her jaw as well as the lymph nodes in her neck. They used her tibula bone to reconstruct the jaw. She is struggling physically b/c she is unable to walk and has a feeding tube so her mouth can heal but also mentally she is having a hard time. It is my understanding that her case is pretty extreme so if there is anyone who has or is experiencing the same thing I'm wondering about her recovery and what we can expect. We have a follow up dr. appt Mon and it just occurred to me after registering that they never gave us a stage so I'll ask then. Thanks!

Hi, welcome to OCF. Im glad you have found OCF to help guide you. This is a huge surgery and takes a long time to bounce back from. Since your mothers surgery was only 3 weeks ago, it will still be several more weeks before she begins to feel better.

I have had the same operation except for the leg bone. My doctors kept me asleep for 3 weeks after the surgery. I was in a medically induced coma and slowly woken up. I had some complications and ended up staying in the hospital for 2 months. This is important to remember, while someone has had a similar experience/procedure, everyone is different and reacts differently.

At the 2 month point, I came home very weak from the hospital. It was still difficult to manage all the feedings, meds and pain levels. I had a great caregiver who was with me for 3 weeks then I had a visiting nurse come 3x per week and lots of friends and come by daily to help me. I would say it was about 4 months post surgery that I was able to have the strength to walk around the block. I was 46 when I had the surgery, your mother may be younger or stronger than I was and could be on her feet in less time.

The feeding tube is a whole seperate thing. Most OC patients end up having the tube. While its uncomfortable and unnatural, it is necessary.

Now I am coming up on my 1 year anniversary of the surgery. While I still have my medical problems, overall I am doing very well. My situation is different also because I had already battled OC twice before with radiation/chemo and surgery. If I had to give a number, I would say I am 85% of my old self and thats ok with me

Your mom will get there, it just takes a long time. If she is struggling mentally with this, many take antidepressants. I probably should have but didnt take them, mainly cuz I didnt want to take any more meds or admit I struggled. There are several others here who have had this same operation. Hopefully they will respond and give more insight.

As Christine said there are many others on this site that have had the same surgery so it's really not that unusual. Extreme yes but not that unusual. The mental part is very difficult with this cancer and all that it can bring but please let her know or better yet visit this site herself to get her to realize that she is not alone and that she will recover and function just fine when this is over with.

Hi, Vanessa,

Welcome to OCF! My husband had a similar surgery. Last November, he also had a fibular graft to rebuild his jaw. Walking was very painful at first and for a while, post surgery, he used a wheelchair when we'd go back for Dr. appts. Today, he is doing very well, moving around and playing golf! He still has his PEG but relies on it very little.

All of this is overwhelming and it is not unusual for your Mom to feel depressed. Be as supportive as you can by reassuring her that she can do it, that you will help her, and that every day is closer to being well again.

As for anti-depressants, they can be another tool to help get her life back on track. While my husband did not take them, I did. As his caregiver, I found myself slipping into a dark void. The demands of caregiving are well documented, and can sneak up on you.

Clark's last 2+ years have been very bumpy with repeated infections but we celebrated little victories as he moved toward recovery. They became milestones and benchmarks that he was getting better.

I love that the people on this site are not only supportive and informative, some have become my friends. While Clark does not use this website, he is interested in what I have learned here and what other people have experienced.

I wish you and your Mom all my best. And keep coming back. This is a great community.

Anita

Thank you so much for your responses. I am so grateful to have found others who have been in my mother's shoes. I hope she will soon be ready to join the forum. I guess I have to take one day at a time with her recovery. Thank you again!

Christine, Anita, and all - Your strength is inspiring. Thank you for sharing your experiences with me.

Vanessa,

I've had the same surgery that your Mom has been through and it does take time to heal. I'm now 2 years out of surgery and doing good. Life has changed, and there are challenges that weren't there before...but nothing I consider to be more then minor inconveniences really.

The surgery is extreme...but not uncommon on these boards. Recovery from it can seem like a long road...I just look at it as I'm not only lucky to be alive, but that medicine has gotten to a point where they could do this surgery so I could live AND have quality of life.

Here is a video of a Carolyn Coogan, who had the same surgery to see how she is now. It helps to see there is a light at the end of the tunnel.

http://www.youtube.com/watch?v=zNW6aY0Xims

Eric...excellent video!!!!!! Boy I wish I looked that good, she is so very fortunate!!!!

Christine...you and me both dear...you and me both!

Hello. I'm introducing myself hoping to be of some help to others. I am the Carolyn Coogan (now in Arizona) whose oral cancer story was profiled by UWTV with Dr. Futran. I've never been on a forum before but stumbled onto this site quite by accident tonight. Every few months I watch my story to remind myself of how blessed I am to be alive and well. Each day I consider myself a walking miracle thanks to all my doctors, nurses, friends, family AND even the barbaric treatment! The purpose of the video, was and is to give hope where there may be none. MY first ray of hope was Dr. Futran. We all need encouragement to fight this battle for our lives. The "C" word, Cancer, was the scariest word I'd ever heard. During my seven months of aggressive treatment, there were three times when I literally prayed for God to take me. This fight was the hardest thing I've EVER done. At age 54, there wasn't one part of the treatment that my body didn't try to reject. But it was all worth it and I'm happy to report that as of this week, I'm now 6 years 8 1/2 months CANCER FREE. Not bad for someone whose survival odds were so low during treatment. If my experience can enlighten or encourage anyone, please just ask me questions. With all the many kinds of cancer, I still have yet to hear of a good one. I firmly believe that only with hope, faith and good medical care do we each have the best chance of survival.