So we've got a recurrence. It's all in the mouth, but it's big and it's going to be a pretty major resection probably 2/3 with a marginal mandiblectomy and a neck dissection for access so she'll take a couple of nodes just to be sure but there is no evidence of nodal involvemenet. No other structures involved.

So, I've read a lot about the surgery, and the recovery from the surgery and it isn't that I'm not worried about that, it's just that I know how to handle that.

What I want to know is what you do with yourself when your loved one is going through a 15 hour surgery. Coping strategies? Things to do while you wait? Any suggestions will be

Hi bwb

I am a caregiver to my mom also. My mom went through the same surgery. It lasted 12 hours and I was a rack of nerves. I sat in the surgery waiting area the whole time because I didn't want to miss any updates. The nurses would come out every couple hours to let us know everything was going great. Try not to worry your mom will do fine. Maybe bring a book to read. After each update I would take a walk to the cafeteria to pass some time. It seemed like the time went by quickly with other family members with me. We were all talking about family times and before we knew it time passed quickly.

My mom stayed in ICU for 4 days with sedation due to the Treac. Keep in mind your mom won't be able to talk due to swelling and healing. She will have questions. Make sure you get a note pad with a pencil so she can let you know what she needs. That's very important.

Good luck to you and your mom.
Heidi

Hello bwb, sitting here talking with Stephen my husband about what you and Chris are about to go through. Stephen wants to tell you that he wouldn't have made it through without my constant help to supplement the nurses.

The main issue being the trach. You can't drink water, so you will need to moisten Chris's lips, she will be extremely dry. You will need to help suction the thick phlegm from the treachia constantly. Our concern is the lenght and great involvement of Chris's surgery. Your mom's body will endure quite a shock from being under for that length of time. Stephen's surgery lasted 12 hours and he recovered as expected but he did have a persistent high fever for 12 hours for which they could not find the cause. He also developed large bed soars (dark red circles). I had to be careful to prop up his body on that side for weeks and with all the drainage tubes he could hardly move. The nurses will be in every hour at first, so there is no sleep. The nurses shifts will spread appart eventually but you will still probably not be abble to sleep.

This is one of the biggest surgery you can go through. You should have a family member at Chris's side 24/7. I moved in with a cot, I had no choice, each nurse had at least six patients to attend and Stephen was constently chocking on phlegm. The firstt night was OK because he was in ICU with a one to one nurse but from then on I was sitting at the edge of his bed with the suction at hand.
I advocated for Stephen when he was in discomfort and got to the bottom of his stomach pain (his feeding tube had gotten tangled up).

Get all your family assigned to specific tasks so you don't need to worry about any extra responsibilities. Make a shudele of all who can stay at Chris's side. When Chris gets back home it would help to have pur�ed soup frozen and ready to go.

My number one advice for any caregiver is to rest and sleep if at all possible because I went through 5 consecutive days without laying down and that will render anyone into a heavy fog. During Stephen's surgery, I had my sister at my side which really helped because she is a nurse practitioner and her husband is a doctor who has worked with cancer patients. We layed still, talked very little and then we walked around Halifax to get some treats, sunshine and fresh air. I felt unbelievably peaceful because I had done all I could do and my husband's life was in the surgeon's hands whom I trusted.

Do you have any crafts that you can do to keep your hands busy? I always carry some markers and a journal when I am in a waiting room and doodle or write.

If you want to read my hospital journal of all the events and complications that ensued follow this link:

http://www.ihadcancer.com/ScintillaRay/journal

Hope this helps, ask any questions, Sophie & Stephen

I spent the 14 hours Kris was in surgery with a good friend who travelled with us to the city where he had his surgery. We went shopping, the movies and lots of coffees and cake. His surgeon phoned me when the surgery was completed. Then , my Girlfriend accompanied me to the ICU. It's a matter of being busy. I had complete faith and trust in his surgeons and the Anaesthetist, so wasn't worried that anything catastrophic would occur.
I spent most of everyday with Kris. Assisting him, advocating for him, translating for him. I guess it was somewhat easier for me as I am an ICU Nurse. Nothing phased me and I was able to trouble shoot problems as they occurred. I picked up his low Calcium levels, not the Medical team .
I think it is so important to be there, just to love them, let them know they will be ok, that you are there for them.
Thinking of you, Tammy

A couple of my college buddies came to sit with my mom while my surgery was going on. One is a psychiatrist and one is a social worker so they offered her a lot of comfort. My mother also brought a piece of an appliqu� quilt to work on. She now has it to look back on and remember that it helped her get through a terrible time.

I'd really like to thank everybody for the advice. She came through great. They had to take a bit more of the bone than they intended a little over half of the mandible. However they took just about half of the tongue so a little less of that than they anticipated. The bone/skin graft is the worst of it but she's starting to have pain free days. All in all they were super thrilled with how she did. She has afib so had to be on a blood thinner throughout the recovery. The plastic surgeon was certain she was going to bleed and he would need to go back in, but not so much. She did great. Because of prior radiation her swelling hasn't gone down as quickly so she's still on the trache but that will be coming out next week. She is doing well with the speaking valve which she always wears except when she sleeps.

Rads start next week and she's despondant because she was really hopeful about being able to get implants after all of this, but other than that? All is going pretty well.

Oh, that and a pesky case of the shingles. Really? Shingles? On top of everything? She had the vaccine and everything. Oh well. We got the anti-viral started within 24 hours of the onset of the rash so we're hopeful it won't be too bad.

Shingles happened to my husband too, just when he had been scheduled to have his esophagus opened. We thought nothing of it but when we went to the hospital, the staff wouldn't even come into the room. They talked to us standing just outside the consultation room. Then when we left, the room was sealed and had to be disinfected before anyone else could use it. Staff who had to have direct contact in the room with us had to wear a mask, a surgical gown and gloves. It felt a bit odd and funny too. The shingles lasted only a week. Hopefully your mother won't have too bad a time as a result of the shingles.

When your body is weakened anything can take hold... hugs... and hopefully rads goes well.

Well, the shingles actually caused a couple of week delay on her treatment. However, she had her last rads on Friday. She handled it way better this time than last. I imagine that is due to her limited amount of native tissue in her mouth. Less things that have feeling are less things to be sore.

She's unlikely to come off the feeding tube, however, she's gained a lot of mobility in her tongue over the past few months due to all the mobility exercises she's been doing to try to keep the mobility in her tongue so they are going to do some reevaluation of her swallowing when her mouth has healed up, just in case.

She will be fine, however, if things don't improve on that front. She's just happy to be pain free after surgery. And she is certain that her daughters can work out how to travel with the tube. I'm sure we can, too.