My husband is 3 weeks out of treatment as of yesterday. He is getting nowhere. Still taking all nutrition and water through PEG. He is still hacking up copious amounts of thick mucous and his throat has actually gotten more sore in the last few days. Now, he is only taking oxycodone before bed to help with sleep. So, I'm thinking that he should still be on pain meds for the sore throat? I tried to push him this morning to try drinking some warm herbal tea to kind of get the goo to slide down the throat. I just keep thinking that he needs to get some of that mucous that is clinging to his throat to move. I'm at a loss as to how I can help him. He is so depressed and didn't react well to my prodding this morning. He insisted that he would choke and that his throat feels too tight and swollen and thick to get anything down there. Should I back off? I am trying to be sensitive to him and at the same time, push him a little to try the next step. Am I wrong? Since you all have gone through this, I am relying on your advice and feedback. I'm trying so hard to get this right. I just want to cry but I maintain a calm front because he certainly doesn't need me being emotional. Ugh. I have been reading and trying to see if he's behind in recovery. I know everyone is different. Please help me out here, Guys. We have an appt. with his RO next Thurs. I'm hoping that he makes a little progress before that visit.

Trying to help my guy,

Carol

Hi Carol. It sounds like you both are just about where my husband and I were at that time. My husband's gunky throat was at its worst for about 3 weeks after treatment ended, and then it started to improve. I also struggled with gentle prodding versus not wanting to push him too much. It was so hard to see him suffering so horribly and there was not much I could do to make it better. Just know that you are likely at the worst of it now, and he will get better!!! My husband was completely unable to take anything by mouth for a few weeks. The swelling should start going down soon. He will have to push himself at some point though to start swallowing. I'd continue with some intermittent, gentle suggestions. Again, know that this will get better. Your just being there is a tremendous support to him. Please keep in touch with us and let us know how it is going. Feel free to email me directly as well. Good luck, and you are doing great!!

Randi

Randi, I can't thank you enough for your reply. Just knowing that you understand what I'm struggling with at the moment is comforting. You really do understand! It means a lot. I know that swallowing is of utmost importance and gentle prodding is exactly what he needs. I have no idea what he feels like at this moment and I always try to keep that in mind. Thank you for your support. I just might take you up on that email, as well. I see from your signature that your husband is just a few months ahead of mine with the end of treatment. I'm so happy for the two of you. What an accomplishment, huh? My best to you both and thank you for your time.

Carol

Carol, Im so sorry your husband is having such a hard time! As a caregiver you have what feels like the weight of the world on your shoulders. It must be so difficult to watch someone you love struggle and trying to help but only managing to feel helpless to them. I just cant imagine how hard this is for you.

Your husband is right about where most of us were after only 3 weeks post rads. Recovery takes a LONG time, much longer than any of us would like. Its full of ups and downs with some setbacks thrown in here and there. Everything really will get better very soon. He is almost at the point that we call "crawling out of the tunnel". One day very soon he will wake up feeling slightly better than he did the day before. He will realize he has finally made some progress and then the healing will begin. Radiation is progressive and continues to work for weeks after finishing treatments.

The thick gunky mucous last only about a month before it overnight turns into the dry mouth phase. He can always go see his ENT or oncologist to get suctioned out. Ask your doc for a prescription for a portable suction machine so he can do it at home.

Rinsing with seltzer water, using a waterpik on its lowest setting and continuing to rinse with baking soda, salt and 16 oz of warm water all will help as well. Some members have found relief with gargling with seltzer water.

His intake still must be your main focus. Every single day he needs a minimum of 2500 calories and 48-64 oz of water. This needs to continue until he hits the one year post rads mark. His nutrition is what will heal him and get him back on his feet. If you can push him to take in more, even 3500 calories its not too much for this phase. The more he takes in the better he will feel.

Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.

Easy to Eat Food List

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.



Hang in there, things really will begin to improve very soon.

Christine, thank you soooo much for all your encouragement and advice. You certainly have been there. You're rather incredible. I looked in his throat today and it appears his mucositis has worsened back there. His mouth is almost healed except for under his tongue. Because the rads continue to work for a couple of weeks post tx, is that possibly why his throat has gotten worse the past week?

He is so exhausted that I watched as he sat in his chair, watching TV. He started to cough up mucous and gagged. As he was spitting into his bucket, that poor man started nodding off! It was so sad and pathetic I had to go into the laundry room and have a good cry. Just breaks my heart. He will not lie down at night. He stays propped up on the couch because he says he chokes if he's not upright. You can imagine he gets very little sleep.

Alright, enough of my rant. Big girl pants are back on!

Thank you for ALL your help.

Carol

Carol its a tough time, 3 weeks post rads is about as bad as it gets. Every journey is slightly different, but it should start to improve soon. As Christine says it takes a long time. Sometimes it feels you're not getting any improvement at all. It takes months not days or weeks. Don't be demoralised by that, just hunker down for a long haul and accept that a slow recovery is entirely normal.

Keep the machine working and it will repair itself. Keep the nutrition and hydration up, manage the symptoms, particularly pain. Pain interferes with healing and sleep. Pain meds can interfere with bowel function so keep on top of constipation. Keep in regular contact with a good doctor to monitor and manage changes in symptoms. Often its good to go to the doctor with a bunch of symptoms and leave relieved to hear that everything is within expected norms.

The most important thing is nutrition. A lot of people think they can afford to lose a few pounds and they'll pick it back up later. It doesn't work that way. Keep the intake up the whole time, otherwise it will make the recovery even longer.

Lastly be kind to yourself Carol. It is very easy to blame yourself or be frustrated he is not eating or doing what he should. This is also entirely normal, just recognise you are doing your best and you are getting through it. Look back and you'll realise you've already done an amazing job to get to this point.

Hi Carol - It's been a while since I was Caregiver for my son - but I still remember very well how difficult those few weeks after Rad Tx ended. But as others have said, it will get better. It gets so frustrating when it doesn't look like the person you are trying to help doesn't seem to care about doing what he should. My son, also slept in a recliner and became so very depressed and all the time he was assuring me that he was taking his meds on time and drinking enough water when in fact he wasn't. What I did was make a chart which contained all the meds he was supposed to take and the times he was supposed to take them. Also on the chart was what he ate and notes about what happened. It had all the doctor's names, phone numbers and names of the nurses and assistants. That way when I had to call I could ask for a name and I could tell them what was going on and what time it occurred. I put the chart on my son's refrigerator so he could check it and make sure he did what he was supposed to do while I was gone. I usually went home at night, but sometimes I stayed overnight. I think having the chart to deal with helped him to feel more in control and take some of the responsibility for his care. It is really important to record everything that goes into or comes out of his body. Not everyone reacts the same to situations, sometimes you just have to keep trying different things until something works. It is soooo hard seeing someone you love go through the torture and after-effects of surviving. My son also did not react well to my well-meaning efforts to help. He couldn't raise his voice much because of the pain in his mouth and throat, but I knew he was attempting to yell at me when he told me I could not understand how bad it was and that it felt like sharp knives piercing his throat to try to swallow anything. I used to cry on the way home in my car or run to the bathroom until I could hold it together. Things will get better and maybe the two of you will even manage a smile or be able to laugh at a funny movie. You are an excellent caregiver, Carol - all the more reason for you to make sure and take care of You and do something nice for yourself. Ok, now go do it.

Sleeping propped up is helpful with the thick gunk. Many of us have gone thru the same thing and slept in recliners or propped up on extra pillows.

You are correct, rads is still working so thats why it looks worse in your husbands mouth. Dont be afraid to take him back to the doctor if he is still struggling. Too often when a patient ends rads, they feel abandoned by their medical team. At the very least they can suction out the gunky mucous and at the least confirm everything really is ok.

Hang in there! Very soon your husband will begin to improve! Please dont forget to make some time for yourself thru all this too. You are right there every step of the way and going thru it too.

Carol,

My Dad went through the same thing. We didn't know until a few weeks after radiation stopped that everything gets worse for about four weeks after treatment. Doctors weren't real helpful with information. This is a very difficult process for everyone (the patient and the loved ones). Dad was afraid of becoming addicted to pain meds so resisted taking them, but our GP doctor and nurse said so long as you take meds as prescribed it should be okay. The healing process is very long. My Dad got real depressed thinking it would never get better, and he still has some set backs. He is three months after treatment, sore throat and pain in mouth cleared up, but tastebuds aren't back yet. But everyone I talked with says they will come back. Things will get better but it does takes time. Of course your guy will get tired of hearing that, but both of you hang in there.
Robin

Thank you, all, very much for sharing your experiences and for your suggestions. We have had an extremely rough day. His throat and now his tongue are both getting worse. The mucositis is actually getting worse! I told him today that, effective immediately, he is back on pain meds every 6 hours, as directed. I know that the rads continue to work for a couple of weeks out from treatment, but is this normal? He will be 4 weeks out next Tues. I don't know why his RO told him that he should be noticing a difference in 2-3 weeks. Really?!! He told my hubby that he will definitely be feeling better by the time he sees him next. Well, that will be on Thurs. of next week. I really don't see that happening. If it weren't for all of you, I think I would be terrified that something was drastically wrong with him.

We are doing very well with his nutrition (PEG) and hydration. He's getting 3200-3500 cal. a day and he's been getting between 70-80 oz. of water. It's been very hot here and I don't want him getting dehydrated. He's gained 2 pounds since the end of treatment. Thank you for the reminder of really watching his calorie and water intake. I do push him on this.

Anyway, thank you all for your reassurance, above all. It really does help keep me sane and I read it to him, also. Your words have definitely helped ease his anxiety about not feeling any better, yet. You have also given both of us hope. You guys are really the best. Thanks for taking the time to read and offer your help. Wish I could give all of you a huge hug.

Take care, all,
Carol