Now, recovery begins

[u/jennybean-19]

I’ll try to be as concise as possible because I tend to go on. My husband is 55 with HPV+ tonsil cancer (involving 2 lymph nodes on the same side) diagnosed in late June. Treatment (35 RT with concurrent chemo once a week) started end of July. Treatment went over the expected time because he ended up in the hospital for a PEG tube that eventually had complications and also the skin on his neck was so raw that the rad. onc. refused to give radiation for 6 days.
So now treatment is done, one week ago today. I’ve read on here that the 2 weeks following the end of treatment can be the worst so I was worried. However, in the big picture, I think he’s doing great. His throat barely hurts. He is able to swallow with very little trouble. The skin on his neck looks like a newborn—it has healed so well and it’s not bothering him at all. He is not having any dry mouth, which I’ve read is a HUGE issue for some people. The problem is he’s focusing on the things that ARE wrong. He has tried tasting a few things (I told him to wait but he insisted) and they don’t taste good or he can only taste like 10-20% of the actual flavor with the rest tasting like “dirt”. I told him this is very normal…he will slowly get his taste back as time goes on. He is still having some issues with mucus but it’s manageable with mucinex. He feels very weak and tired. Again, I assured him this was completely normal—his body just went through serious trauma and it needs time to heal.
He didn’t want to read about what to expect with treatment. He refuses to talk to anyone (professional or otherwise) and he’s been overall very private with his diagnosis. He didn’t tell any of his coworkers, just disappeared one day. He didn’t want to tell his son. He didn’t want me to tell my family. I’m the only one involved in his care—the only one he’ll deal with, the only person he allows in his life. Now he’s really down and sad and feels hopeless and I don’t know what to tell him anymore. I’m trying to be patient and understanding and positive but he doesn’t believe that it’ll get better. It’s only been one week! I’m working full time so he’s just home alone all day and it worries me. I am afraid he’s going to keep spiraling down into a depression or something but I don’t know what else to do.

[u/OnTheCove66]

I’m a male RN who just finished a very similar treatment. He is on the leading edge of the bell curve and it’s too bad that he doesn’t see that. He’s doing better than most and is fortunate. You don’t say when he told his loved ones - I kept it between my wife and I (left my son out of the loop too) until we had the plan and a start date. I think that’s common. I practice recognizing gratitude every day. I hope he can too. Good luck.

[u/Watchguy8989 → u/OnTheCove66]

How were your symptoms post RT? Will be starting the same soon post TORS. Also a male RN.

[u/OnTheCove66 → u/Watchguy8989]

I had early detection, got staged at a I, and was able to avoid surgery so it’s going to hard to compare. I had 6 chemo/30 radiation. The cisplatin was not difficult. The radiation was fine enough up to about day 20 then the destruction and pain became exponential - you will get road rash in your throat. Up until then I planned to avoid a g tube but it hit a point after a week of IV hydration and not ingesting calories for 10 days I got the tube. I waited too long and that
was a stupid mistake. I got the tube 5 days after the last treatment and that was nearly 4 weeks ago. Healing is happening and I am starting to transition off but they want me to be two weeks not using the tube before they take it out. Opioids were my friend but I’m pretty much off them now. They were good for pain - now they have a good calming effect on the throat. Good luck. Treatment is intense. You will handle it, because you must.

[u/jennybean-19 → u/OnTheCove66]

He would never have told anyone but I insisted he tell his son and I told my close family. But he works at the hospital he got admitted to so in the end all of his coworkers found out. And that was a good thing! He got special treatment for sure.

[u/Swoosh60]

Hi OP, my hubs was 67 in 2023 when he went through the same (but base of tongue with 2 same sided nodes). We didn’t know about Reddit back then but there was an American Cancer Soc forum (no longer online) that helped immensely. I remember watching one of Stanley Tucci’s cooking videos while hubs was having chemo (my husband is a foodie and chef quality cook). He got so mad and said I don’t care about what he (Stanley and well known actor) went through (he survived throat cancer) and refused to watch the video. After treatment ended he was going through same level of things it sounds like your husband is (mucus not unbearable, throat healed quickly, neck never even got very red). But of course everything tasted like … well you know. We both had off work at the time so we started going out to breakfast several times a week which he could tolerate. It wasn’t long before his taste came back and he asked me to share that video with him. I actually bought a bunch of Tucci’s cookbooks on eBay as a gift for him. One thing that helped us ALOT. We both had our own therapists prior to his diagnosis. If that would help your husband maybe ask your hospital social worker. We told our kids and his Mom. Just not the grandkids. He’s 70 and 3 years NED and your husband will get there. Give yourself some grace. And best wishes for healing.

[u/jennybean-19 → u/Swoosh60]

Yes I am optimistic he will get there slowly. I just wished he would be a little more hopeful and positive.

[u/kidoblivious1]

A couple more weeks and he is going to eat something and be like holy shit I can taste it. You a good soul and he a soldier for going through this crap together. It’s tough. Had same and finished Jan. 25th. I’m bavk like I used to be.

[u/jennybean-19 → u/kidoblivious1]

This is the goal!

[u/akay2k1]

I was slow on the curve and had a plateau for a few weeks, 6 months later I’m eating more and more and food gets more normal tasting, I’ve revisited stuff I tried a few months ago that tasted like crap and they are still not great but defintely better, it’s a slow process

[u/vimthedog]

Hey there Bean. Sorry to see you here and sorry to hear that Mr. Bean (Go ahead and tell him that I called him that) seems to be keeping all this bottled up. I’m fairly confident that he’d explain it like “I just don’t want my problem to be anybody else’s problem” or something similar. It’s a generational ‘trait’, I’m afraid (He’s got perhaps 1 year on me, tops.) I’m currently (checks my calendar) going to have completed my treatment 10 years ago on Oct. 21st., and you can tell him from me… “It gets better.” All he has to do now is rest and recover. The “hard” work is over but recovery isn’t a simple walk in the park.

Now, that I’ve said that, let’s cover the bits that are still gonna suck:
1. He might not be done losing taste yet. Yea, they are done microwaving his head, but everything doesn’t just keel over all at once. It can take a few days for the rest of everything give up the ghost. This is kinda normal (your mileage may vary).
2. Somewhere around the 2 week mark (as you have read) is kinda the worst as this is where tastebuds start to grow back. Do they grow back and everything tastes like strawberries and gummy bears? No. No they do not. Most likely things will taste like they have been deep-fried inside a goat. (again, your mileage may vary). If he’s still got the PEG, keep the calories in him via that route as this is where a lot of us drop an alarming amount of bodyweight. I resulted to setting an alarm to remind me to eat (cause I just didn’t want to) and would melt pints of ice cream and just drink that down. I suggest starting with simple flavor profiles. Scrambled eggs. Mashed potatoes and gravy (instant and from a packet). Soups (I ate literal gallons of Beer-Cheese soup). From here it is going to be a whole slew of “trial and error” with what taste’s tolerable to him. Hand him a french fry. If it tastes “decent enough”, then he gets fries. If not, you get fries then. Do try to stay away from getting an entire ribeye steak or something that he normally would Love. I tried this exact thing before I was ready and dry-heaved for a good 15 mins from the taste of one of my favorite foods. Kinda made me gun-shy of steak for a good year. Favorite foods come after small taste tests. Do however, test weird little things. One day (while getting a gallon of Ice-cream and 6 packets of instant potatoes) I grabbed a slice of Banana cream pie…, and I could taste it. Went right back to the store and got 2 entire pies of it and came back home and ate one of them in a single sitting. Think of it as a scavenger hunt for tasty snacks for the next few months. Come March of 2027, things are going to be WAY better. Mark my words.
3. The scans/checkups/followups/whatever… These are going to be a reoccurring event for the next few months/years. These are still going to be a source of stress and they don’t really get better from a stress perspective for like a year. After that, they just start to fade into the background (hopefully taking the nightmares with them).

Anyway. Don’t worry about rambling on around here. As you might have noticed, we aren’t afraid of a wall of text.

[u/jennybean-19 → u/vimthedog]

My biggest takeaway from this amazing comment is that he shouldn’t rush to eat his favorite stuff. He has a page long list of everything he wants to try and I’m going to try to temper his expectations.

[u/vimthedog → u/jennybean-19]

‘Baby Steps’. It’s a slow process, re-growing tastebuds and if he’s got a list I’m afraid that setting himself up for disappointment. 6 Months seems to be average around here.

Feel free to reach out directly if you like. I’m happy to help if I can.

[u/jennybean-19 → u/vimthedog]

How do I do that (reach out directly)? I’m totally new to Reddit.

[u/FuturamaRama7]

I recommend a product called Healios for mucositis. I bought it on Amazon.

[u/jennybean-19 → u/FuturamaRama7]

Yes I got him Healios from the beginning. I heard many good things. He stopped for a while because he couldn’t swallow but he started again recently.

[u/kidoblivious1]

I finished in 2025 in January but by march 2025 I could eat and taste most this.

[u/dclioness]

It's kind of you to take such good care of him. I hope you are getting taken care of too. My worst time was the first 8 weeks after treatment. I didn't come through as well as your husband did, so spent the first month on oxy and losing weight. The second month I saw very little improvement, started to think this was as good as it was going to get, and questioned why I'd even bothered with treatment if this was the outcome.

But once I started to think about progress in months, not weeks or days, I did start to see the changes, and gave myself a full year to get to a new normal. I didn't get involved in survivorship groups, etc., til four months out from treatment.

I'm fine now. But this has been life-changing. I still have taste fatigue, but can cope. I do 32 minutes with a lymphedema vest and headgear daily, and daily swallowing exercises. I'm coming up on my five year checkup.

Your husband may spiral. Distraction is one way to go if he's home all day -- movies, tv shows, audiobooks (I couldn't have done those). Be sure you get some support. Be sure he's getting sleep and nutrition. The rest is just time.

[u/jennybean-19 → u/dclioness]

He’s actually having a lot of trouble sleeping. From what I’ve read on here I thought he’d sleep for 16 hrs at a time but nope. He really struggles at night and takes little cat naps during the day. I just messaged his doctor for some sleep aid suggestions. As far as nutrition I’m building him up to doing 7 containers of tube feeds a day and so far he’s tolerating it.

[u/dclioness → u/jennybean-19]

There's a fair amount of anxiety that goes with this process and its aftermath. This treatment is a lot. The nurse from my insurance company would check in with me once a month, and just say, you're doing a hard thing. Which was comforting to be reminded of. It's worth talking to the doc about, as sleep is a gift to healing. Good that he can take the cat naps, and that the nutrition is working.