A quick update on my treatment. I'm now 2 weeks post radiotherapy and 13 weeks post surgery. I've also had 2 doses of cisplatin (and won't be having anymore).
I'm still on ensure shakes that go through my RIG (G-tube in US), as does all liquids and medications, as my throat is still too sensitive to swallow anything. I can occasionally drink but most cause me to cough and splutter which then makes my throat sore. So a bit of a cycle I'm trying to break.

I have awful ringing in my ears. I'm still hopefull it'll die down. I have lost hearing and have been told it'll probably be a permanent loss.

I have mild mucositis. All the sticky mucus is at the back of my throat, so I'm gargling warm salty water to help clear it. I'm also filling my shower with hot water to generate steam to also help clear it out. I also get dry mouth at night. It's not too bad yet and I'm hoping it doesn't get any worse.

I'm sleeping on the sofa at night as it's the only place I can keep my head at the correct angle to get some sleep, but man! the tiredness is really kicking my butt. I'm nodding off as I type this up. My energy levels are low. I feel lazy as I spend so much time sitting/napping. Tomorrow my husband and I are off to a Christmas market for an hour or 2. It'll be nice to get out of the house and walk somewhere other than the grocery store. I also need to do a bit of walking around where I live, again just to get out of the house.

I miss eating. It was my birthday last week and I couldn't have anything, so we've put it on hold until I can eat. I'm hoping to be able to eat something for Christmas. I've started having cravings for things. I did try some food but my throat is too sore to swallow and I choked. Not fun. It made me realise I'm pushing myself too hard without listening to my body. So, when the sore throat and coughing goes, I'll start off with some soups and then some mashed potatoes/veggies with lots of gravy.

I get sweaty too, especially at night. I've had a couple of night where I've soaked the bed.

My speech is doing well. Not bad for someone with a sliver of tongue. I've noticed on correspondance from my medical team to my Dr that they're saying I've had a glossectomy rather than a sub-total glossectomy. I need to ask them why it's changed.

I'm 2 weeks post rads and I've had a couple of night where I get hot flushes and really sweaty.

Oooh thank you Connie - that is a blessing to know. Did he start lypmh treatment during after treatment?

Good news Paan. Happy things are improving. Enjoy your soft food!

Anniesmom,
A few OTC supplements I use for sleep aid are Melatonin and 5-HTP. I don't take them together, just one or the other.
Also, I just wanted to mention to everyone to do your own research if you are combining anxiety meds with sleep meds. There is a combination that could cause serious side effects, which happened to my 89 year old father. He was on a sleep aid, I think Ambian, and was OK with it. He went on a anxiety medication due to being unruly at the assisted living place, and had these random fainting / seizure episodes. I'm not certain what the antidepressant was, so I don't want to mention a guess. But make certain to ask your doctor about what med combinations can cause seizures, including herbal supplements.

Hello,
I love this forum. Such amazing people and suggestions. My 91 year old mother had a recurrence of her oral cancer; along with tumor on her jaw. Qualified for an immunotherapy trial which she wanted to try. (In her mind, what have I got to lose?) Here we are 4 months later, tumor on her jaw pretty much gone and cancer dwindling. So here we are with this encouraging news, but the side effects? have been awful. She contracted C-diff in August which took about 6 weeks to recover. We had a feeding tube put in because she was having difficulty swallowing (lots of mucus and gagging). And now, she is sleeping almost all day and night and the diarrhea is chronic. Trying to figure out if this is end of life/stage stuff, needing a break from immuno treatment and/or??? Also trying to figure out the best place for her. My sister has mom living in her house and it's been really challenging for her. Thanks for letting me share this...hoping someone might have a similar story and how you handled this.

Congrats on losing your feeding tube!

I’m sure many will agree with your observation about the formulas. My husband absolutely refused to drink it unless I put in other stuff to improve its taste.

Thank you gmCraft. I appreciate your information! We are going to try to decrease stress, get sleep, take D3 (which most of us Floridians are deficient in), eat good food and whatever else we need to do to increase his immune system.

Sorry to hear about the infection. Hopefully the new antibiotics will clear it up.
Well done for getting your voice too! Take your time with healing and rest well.

Thanks, Eileen! I will check that out.😀

It sometimes come with a small tube of mint flavoring. We discard it and use it without the mint.

Of course! Dad's stay in the hospital for the first surgery (the fibular reconstruction) was 7 days. I think it was 9 days the second time (scapular reconstruction), after rads. They told us to plan for a 7-10 day stay each time. Dad was actually sitting in a chair and having tube-fed meals two days after surgery with his fibular reconstruction. He was walking to the bathroom with assistance and a walker four days out? And he was making laps around the hospital before we went home. We came home with just a cane. He had a visiting home nurse come check his wounds and do strengthening exercises with him for about a month. He used the cane for several months if we had to go shopping, or back to Boston for follow up, or any place that required more than a few minutes of continuous walking. Now he doesn't use a cane. I think his ability to press his foot down isn't quite as strong as it was before as he's only occasionally driven his beloved standard-shift street rod since. He gets around really well these days, though. Likes to tinker on his cars and walk down behind our house to where the parts cars are a few times a day.

They told my dad before his second procedure that the fibula is the most painful of the places to take the tissues for reconstruction, but Dad said he wasn't really in pain after the first surgery, and having an injured arm was more difficult, painful and inconvenient.

my husband tried something called miracle fruit. He googled it. He said it is truly helping with things tasting a little better. the only taste issue he has really complained about is how nothing tastes sweet though he eats entire pies in a day or so....maybe he just likes the idea of it and they are cream pies so they are smooth and go down easy? He is going to tell the ENT at his appointment this week about this miracle fruit.