Husband diagnosed with tonsil cancer: looking for tips and support

I am praying for you and your husband. I failed to mention that my wife, too has modeled Christ in her love and care for me as I go through this storm. God works that way, In life storms He goes through then with us, often in other people. We are not alone . Psalm 138 has been important to me as well. “The Lord will perfect all that concerns me.” A deep thought for sure. God be with you.

I hear you William and SO agree with you !!! Well, hear it for the second time, as our ENT told us they assumed HPV+. We went back to radiology and had them do staining for HPV to be sure. I don’t know why they are so vague, because it does mean a big difference in treatment and outcomes. It is SO necessary to be your own advocate on such matters, and demand to know.

I was diagnosed with HPV16+ OSCC in March 2023. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I have just completed 30 rounds of Proton Radiation to "cleanup" and cancer that may have been left behind . As far as presurgery I don't recall doing much but waiting for the Surgery. The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) for about two weeks after surgery. I would start doing mouth, tongue and swallowing exercises today. If you have a Speech therapist they can help you with this. As far as post op. The pain is fairly severe for one week after surgery. I had alot of mucous where you feel like you are almost drowning. It will be hard to eat and drink. Think soft foods and Boost drinks. I had pain medications which helped tremendously. My current side affects are loss of feeling in side of jaw up into the ear on right side. Lip droops a little on that side. Scar has pretty much healed. Good luck to you and you husband . He can do it!

In short, the surgery pain was manageable. No feeding tune for surgery. The doctor told me it is best have the adjutant radiation treatment within 6 weeks of surgery. For the radiation, I was told a feeding tube will be as required. They do blood test every week to check.

Here's a more detailed description of my surgery. I'm doing this because I could not find anything and I fervently hope this is helpful.

Apparently I have to do this in multiple parts for me to be able to copy and paste my original write up.

Part 1:

Got up Tuesday 13 June around 4:15AM, nothing to eat or drink and did a bowel movement. Unbeknownst to me at the time, it was important for me to know when that had occured later as was asked about it multiple times later. Arrived @ 5:30 AM at check-in desk. Guy who was as thrilled to be there as I was asked prefunctuary questions about contact info, living will status, sign a consent, and attached my wrist identifier. Were then given directions to the double doors of fate. There, a way too chipper person again checked us in and gave us a clipboard with a check list, did a text test with my wife and explained how she would notified with different color codes on a screen as to my progress. I was glad to not see a color for "oops" or "did not make it". In a bit two nurses came out. One was under training, the other had been there for 27 years. They double checked no jewelry, no valuables, no new tattoos, and to get hugs and kisses in. I prudently figured she was referring to my wife. And off I went to my pre-op bay.

Part 2:

In the adjoining bathroom, they laid out my op gown and three sets of 2 each disinfectant napkins. I was to strip, use one napkins each to wipe my legs, arms, and front. Put the gown on and the trainee nurse came in and used the final napkin to wipe my back. And then she attached some kind of anti bed rash pad on my lower back. Into the bed and then I had to swab the inside of my nostrils with red iodine looking swabs to lower the possibility of mersa infection. Of course I missed at first but the took pity and cleaned me up. Next was the IV needle for the electrolytes (they sai it was like Gatoraid) and started that going. Then it was working on the checklist and "charting" me into the system. During that time, one of the Doctor's nurses stopped by and asked what procedure I was having done. I passed. Next the operation room nurse came by. Couple comments and he was off. Then the Doctor came by, visited for a bit and he did a handshake/footshake on the way out. I did try to give a firm footshake so he would think I was confident. Then anesthetist number 1 came by. He visited, then left and anesthetist number 2 came by. He said he would be taking me to the OR. Said this shouldn't be much of a problem (reminded me of the guy getting a covid shot next to me and telling the guy injecting him, he didn't feel a thing, and the injector guy saying "me neither"). So then he put on my "party hat" shower cap thing and off he wheeled me. This all took about an hour and a half.

Part 3:

The OR room was huge, much as I could see. They had me get on the OR bed. Anesthetist number 2 put this strip with wires coming out of it on my forehead. He called it the magic strip and said it read your brainwaves and would tell at what level of unconsciousness you were. He was pretty amazed at it. Then he put an oxygen mask on me for a bit and said I would be out in about 8 seconds. Pretty sure it was less. Next I was back in the original preop bay where it was loud with multiple people. Was asked how are you and I said "restroom and congested". They did all the vitals and then I was handed a spit cup. Then I was handed a pee device and they closed the curtain. Then they were back. I don't remember much pain, just being groggy and it was hard to talk. I was also covered in sweat and got some toweling off. Then they put these wraps on my lower legs to stop blood clots. The wraps would squeeze one leg above the ankle, then lower calf, then just below the knee and go to the next leg. Finally they were done with checklists and said I would be in a room when one came available. In the meantime, remembering that one of the possible side effects was limited ability to raise your arm due to a nerve needing to be moved. I was glad that my right arm raised fine, until I remembered the surgery was on the left side. Really? But all good, left side worked fine too.

Post 4:

Was pushed into my "short stay" room around noon ish. No window, curtain inside double glass doors. Met the recovery nurses and was briefed. Was hooked up to an IV for a 30 min session of antibiotics. The massaging anti clot wraps were hooked back up. Vitals would be every 3 hours. Also a pulse monitor on my finger and the drain tube running through my dissection was hooked to a vacuum. Still no serious pain or discomfort. And then I had to go to the bathroom. So nurse call, unhook me, escort to the bathroom off the hall, instructions to pull red cord if problems. Looked in the mirror. Wow. I had no clue the cut on my neck would so long. It went from bottom of my ear down to the middle of my throat about 3 inches below my chin with a little fishook like cut at the bottom back upwards. And black glue holding everything together. And the clear plastic tube with blood in it going up from behind my ear like a Sci fy creature. And why does this not hurt like hell, or when will it? Deep breath, do my stuff, and back to my bay.

At this time my back left tonsil area was very sore similar to strep throat.
Bottom left tongue was sore
Left jaw sore, painful when opening mouth more than half way.
Left neck below ear was sore inside. My ear and neck was extremely numb, so not sore. Apparently the nerve in that area was stretched.
Minor stomach ache/slight nausea (varies)
Very tip of tongue was numb. Not sure why.
Spot on bottom left lip was bloody but not bruised
Right side top tooth pain with cold.
Very top of head sore, like it was scrapped. Cannot feel an abrasion.
General lack of energy

My wife came in shortly after and said she was glad to see me. I replied "me too". She said the Doctor told her after surgery it went OK, just went a couple hours longer than planned because there was an artery in the way. She said Doctor will talk to you tomorrow and you may be staying for an extra day. Great.

Part 5:

So we learned the pain medications. You were automatically given 2 Tylenol every 6 hours. Additional meds were allowed based on pain level expressed by the patient on a 1 to 10 scale. Best I could figure, 5 to 7 meant you could in addition to the Tylenol get oxycodine every 4 - 6 hours as needed. If you were at 8 - 10, then they would put something in your IV. I never used the IV and the oxy once. The oxy didn't seem to do anything for me. I learned if you were going to try and eat or drink, plan do do it between about 30 mins to 2 hours after the Tylenol. After 3 hours, I would start watching the clock. But pretty much that day after the surgery, I didn't feel real bad….

After awhile my wife said looks like you're OK so I'm heading to the bar. I said "Ok" thinking I misheard because of the drugs or something. A while later she came back, "Nice bar. She had some Miller lites and talked to the bartender who had gone through treatment for bone marrow cancer in 27 bones". She also talked to another couple who still optimistic after 7 surgeries for tumors found on her kidney will she was having a c section for her second child. Turns out the Jacsonville Mayo Clinic is the only one with a liquor license. She said I chose wisely.

Later they wheeled a recliner chair in for her to sleep in. They did ask if I still wanted the annoying leg massaging wraps and was able to get those off. And I proceeded to harass the staff by having to go the bathroom when they were not already in the room for something else. Hey, bladder rules.

Not much sleep that night with the vitals checks and getting more antibiotics through the IV. And i had to have the bed back reclined up at 30 degrees in case of bleeding. In the morning, I had my choice of beef, vegetable, or chicken broth and juice. I got chicken and Cranberry juice. More Tylenol, vitals checks, IV refill, questions about pain level. Another bathroom trip. Peed red. They had told me blood in urine was real bad. Luckily I remembered the Cranberry juice before I pulled the red cord in the bathroom.

Doc came in. Gave us the news about having to stay another night for observation. He left and my wife said, "Well at least i know where the bar is." So ordered beef broth for lunch. They were out. Chicken, out. So it was vegetable broth and Apple juice. And then my salivary glands went nuts. My throat keep filling with mucous. It was more than I could swallow, so I would spit it out into napkins. It was constant and incredibly annoying. And I was not told this could happen so told the nurse. She checked with the doc and response was it was something they did not treat. So all afternoon I did spit deposits (SD). And my lower abdomen started feeling really bloated. Nurse said that was normal from the surgery. Being cranky, I tried to fart in her general direction. And the mucous continued. It was thick enough that I could pull it out like a fishing line. It was gross. I showed my wife. She was not amused and went to the bar. I've since read most folks don't get the spit problem but one guy mentioned his clogged the sink drain.

Got a reprieve from the broth and could order cream of wheat for dinner. More SDs. Finally tried to sleep. Best I could do was lay on my side and put a bunch of napkins under my mouth and assume the drool position (DP).

Next morning for some reason I was back to the broth only option. And they only had vegetable. My wife mentioned this to the staff and a saint nurse brought in some beef broth. Through out all of this I was never hungry but did know needed liquids. So got released but was told best if we stayed in the area and had the dissection drain tube removed at the clinic the next day. The drain tube was clear, about ¼" and went behind my ear, into the skin and to the bottom of the incision. The other end went into an about 2 - 3" squeezeable ball and then to a suction machine. The liquid was pink. The ball would get emptied so often. After about a day, the took me off the suction machine and just squeezed the ball to make a suction. The drain gets pulled when the amount of liquid drained within a 6 hour period reaches a certain level.

Lots of good information and enjoyed the read. Hospitals are certainly not a place to get any rest.
For my mandible surgery my wife was going to meet me on the other side of the hospital where the rooms were located. As they wheeled me off for a six hour surgery she called out “see you on the other side”. The nurses just about fell over themselves assuring us I would be OK. We still laugh about that.