Hi there. This is my first time on this forum. I am in a hospital waiting room outside the ICU where my mom is really suffering after surgery to remove her lower teeth and gums and part of her jaw bone due to squamous cell sarcoma.

She is 71 and prior to her diagnosis a month ago was the picture of health for her age. It is devastating and hard not to give in to regret regarding having the surgery when she is now on day 3 of misery after surgery. She never smoked or chewed tobacco, but she is now having difficulty keeping her oxygen levels b/c of fluid in her lungs from the surgery. She is in such incredible discomfort and angst. I am having a very difficult time watching her suffer.

Is there anyone out there who can provide me some of their own experience with a loved one after surgery...once they've fully recovered. Is life ok? How long did they spend in ICU? How long were they miserable? How is life once they heal?

My heart is broken for my mom right now.

Thank you for any help.

I don't see anyone on the site right now who has been through what your Mom is recovering from but I know you will get some answers soon. I can only imagine how tough it is on both of you right now but have faith in her doctors. There are also many many of us that were not tobacco users that went thru this cancer so she's not alone in that respect.

Welcome to OCF. You will get lots of support to help you deal with everything. As a caregiver, I think you have a very difficult job. To me being the patient was the easy part. I saw the hurt and saddness in my son's eyes when he would visit me in the hospital.

I will try to help you, but it will be from the patients point of view. I had all my teeth removed after my second round of oral cancer in the hopes of getting dentures. My teeth were ruined from my first round of cancer, the radiation made them very loose and crooked. I did 85 oxygen treatments. It was in a clear glass tank breathing oxygen under pressure.

During the spring and summer of this year, I felt great. I felt as though the cancer was finally behind me. My son and I went on a 25 mile bike trip. We were making plans to do white water rafting. We were always very active, and I finally had my strength back.

Then in July, I got the bad news. My cancer was back for the 3rd time. Like your mom, I was shocked at how I could feel so good and yet be sick. My left lower jaw had to be removed and I would go back on the feeding tube. My jaw would be made from steel. My life as I knew it was over. I found a home for my 2 dogs with a friend from OCF. Her mom has them. I put my beautiful house up for sale. I lived way back in the woods, much too far from help if I needed it while recovering.

On August 24th, I went thru the operation. I had some complications and ended up having 4 operations along with picking up Mersa over an 8 week timeframe. I was kept fully sedated for several weeks in ICU due to the pain level being unbearable. Every time the docs would try to wake me up I would try to pull out everything i was hooked up to and claw at my face. Next I was moved to the burn unit so I would have better care for all my wounds. Still I was pretty much sedated to keep me calm. I had 3 donor sites on my thighs which needed to heal. From my right forearm muscle, veins, nerves and tendon was taken. All the wounds were very large and painful.

There were many moments that I wished I hadnt gone thru with the operation. I felt so bad that I would have rather died than continued hurting so much. It seemed like I would never improve enough to go home. I started to lose hope that I would get better. My son came to see me every day and did his very best to let me know how much I was loved and needed. My OCF pals would call and some would visit or send cards. My memory was affected and i still cant remember about 3 months of what happened.

Today is almost 3 months since I had the surgery. I am doing great!!!! My improvement came about 2 weeks after I was home. The more I walked and paid attention to my hydration, calories and tube feedings, the better I felt. Since I had cancer and the peg tube before, I knew what was necessary to feel better. My apartment is near a very large park. Somedays when its warm, I walk to the park and feed the squirrels. Next spring, I plan on riding my bike in the park. I am able to drive and go to the grocery store. I take care of myself completely now, I clean and even sometimes cook dinner. I eat yogurt, soup and puddings. My outlook is positive and Im very happy that I did the operation.

Your mom is going thru a terrible time right now. Im sure she is in alot of pain. It must be awful for you to watch someone you love struggle and not be able to help them. Things will get better for both of you. Motivation and positive thinking helped me. I got over 200 cards, flowers and many prayers from friends and fellow OCF members. My hospital had an online place for people to send free cards. Maybe you could look up her hospital online, if they offer that service it might brighten her day.

I hope my story gives you an idea of how long an operation like this takes to begin to feel better. This type of operation has a long recovery time. If your mother is upset and hurting, the doctors need to give her proper medications. Make sure the nurses know she is in pain. Please keep visiting and encourage others to visit as well. Even if she doesnt remember, it will give her comfort while they are there. I wish you the both the best of luck with your mother's recovery. Please feel free to ask any questions.

I am so sorry for everything you and your Mom are going through.

I don't have a similar situation, but I did nurse my 73 year old Mom through knee replacement surgery this year. So I know how heartbreaking it is to see your mother suffer so profoundly. I found just listening to her, being there for her and sometimes holding her hand gave her strength. There is life after misery, she is back to doing what she loves. She is dancer with a vaudeville group and has 3 or more gigs a week. She's even been featured on television a few times.

My husband had the SSC carcinoma and although he did not have your Mom's type of surgery, he did suffer while going through treatments at times. Again, just listening, being there and holding a hand helped him through it. He is back to a normal life.

Hang in there with your Mom and know there is always hope for better days. You sound like good daughter and I am sure you are the best medicine for her right now.
Do you have any brothers or sisters that can help and visit with your Mom?

Ginny

Thanks everyone for your stories. It is so helpful to hear from people who have been touched by this disease. I can't believe the suffering it put you through Christine. Your story gives me a lot of hope, but also some fear for what may lay ahead. It is still so new for us that I am in that "very-pissed-off-at-cancer" phase - particularly oral cancer, although I know all cancers are awful. Maybe that never goes away.

My mom is still in ICU, but she is showing more signs of life. More alert, moving a bit more, etc. Progress helps.

I hope I can convince my mom to join this group and connect with people who can relate to her story and where she can find support. The stories of recurrence and multiple surgeries is a little frightening, though, at this moment...so, it may take her feeling much stronger and recovery from this phase before she's ready to see some of that.

I wish the best to you all. It truly is a horrific disease - and I didn't mean to imply by my original post that it's any less horrific for someone who smoked. Either way, no one should have to go through this. The strength of everyone who undergoes treatment is truly inspiring.

Theresa
p.s. Ginny, my brother is here for two weeks helping out, so I'm not alone in the ICU with her. It definitely helps.