I'm just over 4 weeks post rads and I've developed a salty taste in my mouth again. It's just like the one I had during rads. I honestly hope it'll go away as it's constant at the moment. Although I do have white patches at the back of my throat, so I'm wondering if its thrush as I believe that also gives a bad taste. I've got an appointment with my sarcoma team on Monday so will get them to check it out.

I've been sick a few times, but from trying to cough up mucus that had got stuck in the back of my throat. It can trigger my gag reflex.

I'm starting to flag a little bit this week. My positivity is waning. I'm back sleeping n the sofa at night as my mouth gets so dry I wake up coughing, so sitting up while I sleep eases that. Being sick a few times are calories I'm not getting back. Being frightened of choking has put me off food. The salty taste that i've not had for weeks is back. I feel like I'm going backwards. I have a horrible feeling my Christmas dinner will be ensure plus through my feeding tube.

Sorry to be negative, especially when I've been upbeat for so long.

Hey Dizzy,

I just got through Thanksgiving with VHC Boost. It bummed me out. I am 8 1/2 months post radiation. I'm beginning to get very anxious that I'll never get off of a liquid diet, for the most part. My doctors sure were correct when they said this is a slow........... recovery. I had surgery, 2 cisplatins and 35 rads. The main issue I have is saliva and my burning tongue. Although, I have noticed in the past couple of weeks that all of a sudden I will have spit and can lick my lips, then it will go away, but then happen again a couple of days later. Yay!! It truly does feel like we're taking one step forward, and two steps back. Every one of us is so different, I sure hope you progress quicker than me. A couple of things to help you in case you don't already know are VHC Boost 530 calories. I tastes really good and you don't have to drink as much, or put as much in your tube. God knows it's bad for our teeth. It's available on amazon. Another one are Xylimelts. They're pretty effective with dry mouth. Also on amazon.

Hang in there sister, I'm hangin' in there too.

Hey Dizzy. We received radiation and chemo treatments about the same time - my treatments also were finished about a month ago (but I didn’t have surgery). Like you, I have been frustrated at the slow pace of recovery in my mouth (dryness, mucous, sores, pain, swallowing). My solid food intake has been pretty minimal. Absent solid food I have been having a tough time regaining weight, strength and stamina. All this is to say, I met with radiation and medical oncologists last week and they said I was doing really well. It sounds that despite your recent setbacks that you are also doing well. I don’t think it’s possible to recover from this scourge as quickly as we would like but stay positive (and patient). I think that a positive attitude will generally help with the pace of recovery.

Hey again,

Just wanted to say I don't mean to be discouraging at all by sharing my slow progress. I apologize for that. I was just commiserating with you. I've read lots stories where OCF patients are eating within a few months. Besides the food issue, the rest of my life is pretty much back to normal. I still need to get a bit more energy back. It absolutely gets better!! Oh, another tip. When you're ready for it, use an electric hand held massager for your neck, shoulders, head and chin. Get one that really works muscles. My lymphedema is almost completely gone. It's amazing!

Take care,

Thankful Girl

Hey Thankful Girl,

You're not discourahing me at all, actually it's great to read your progress and know that I'm worrying over nothing.
I love your idea for the massager. My husband has decided to get hunt around for one for Christmas. Hurrah.
Yesterday I had a pep talk with my speech therapist and lead nurse on my ENT team. They both said that I worrying over nothing as I'm still way ahead of progress, I'm just pushing myself a bit too much, although they understand my drive to improve. They also reminded me just how much my body has been through an needs time to heal.

My energy levels are actually quite good, although they can be better. The weather here has turned cold and wet so I'm loathe to go outside. The warmth in the house has lured my inactivity, haha.

I'm so glad you're pretty much back to normality. I think once I go back to work then it'll help. Plus I find out next week if I can have my port removed. If it goes this month I'll be so happy. I still have immunotherapy but it's once every 3 weeks for the next 30 weeks, so I'm thinking I don't need it anymore. Fingers crossed

Hey Barry,

Thank you for your message. My specialists are also really happy with my progress, they keep reminding me that it's marathon not a race with regards to healing. I just want to eat something warm! lol.
You sound like you're doing really well. Keep going fella

Hey Dizz - I'm so sorry to read about your problems. I can certainly relate, though I didn't have it neaaarrrrly as bad as you. But based on that experience I can assure you that things will improve. After my rads I was basically on the couch for 3 months (I was older so maybe that was part of the reason), and I don't recall eating anything solid until about this time of year... 6 months after the end of treatment. So you're already doing a whole lot better.

Hang in there. We're all pulling for you, and soon enough today will be a distant memory!
David

Hey there,

Just wanted to check in! I am 6 treatments away from
finishing radiation, so I've been following your progress! Keep up the good work and keep us posted.

R0se

Hey Dizz!
I just completed my radiation this past week and I feel exactly the same! I have thrown up more than a few times from coughing up the mucus! I got some food stuck in my throat too and it’s definitely putting me off eating until this thick mucus dies down and starts to go back to normal

Hey Barry, sounds like we are in the same boat. As of 12/15/19, I'm 4 weeks out from 35 radiation treatments and 5 weekly Cisplatin treatments for BOT hpv16+. I'm starting to gain some energy, but sore throat, painful to swallow and lotsa mucous/spit. Today doc gave me Nystatin for thrush, hoping that helps as my mouth and throat are a mess. I've had a feeding tube most of the time, so I've maintained weight pretty well. Doc wants me to increase swallowing, using water and soft foods. Have any comments or suggestions?

Hey Rob. Sorry for the slow response. My first comment is to listen to your Doc and get cracking on the swallowing if you haven’t already. For me it has been easy to avoid solid food and swallowing in general but I think it will delay recovery. The more the complex set of muscles in the throat involved in swallowing are inactive, the longer it will take to retrain them to swallow effectively.

The list of soft foods and liquids to consume are only limited by your imagination. Christine has an excellent list of easy to swallow foods and, really, most anything that you would want to eat can be reduced to a liquid substance with enough water and blending!

My second comment is to push yourself a bit. You may not be getting much pleasure out of eating but think of food as your “medicine” to help with this stage.

Third, experiment with using liquids (water, gravy, butter, sour cream, table cream, milk, ...) as a substitute for saliva to help render solid foods to a state that they can easily swallowed.

Stay active and positive if you can. I feel best on days where I’m doing something productive or at least getting fresh air.

Best wishes for your recovery!

You are 10 years in post treatment? Has your life been back to pseudo normal? Does it feel like you feel comfortable calling it remission?

Any updates Robin? How did your treatment and recovery go?

What GY was your rada? 70? I've seen some as low as 50 but not sure the viability. Was your diagnosis P16? Surgery for lymphnode?