Yes I’m almost 7 weeks post. No feeding tube so I’m still drinking my meals. Had a dream that I was eating some tortilla chips.....woke up and I was sad!😂
Some days I feel pretty good. Some days I feel like I took a step backwards. Have lost 30 pounds since this adventure started back in February so I’m trying to add more calories to everything. I have to admit I like the weight loss body! But I do t want to lose any more. I will be so happy when the tongue sores heal!!

Thanks for the encouragement! Positivity is such a help when you are going through tough times!

Linda

You're not missing anything Linda, tortilla chips taste awful right now, as do most things. I am just over 8 weeks done and food is still a challenge. I lost 30 pounds and could still stand to lose more so it's not a problem. You just realize how much enjoyment plays into eating. As for traveling, I said before I took a flight the day I finished rads. I worried about taking a 3 hour flight with the mucous issue and finding adequate nutrition. I packed some liquids and powders and checked a cooler. I took a spit cup and wore disposable underwear in case I had an accident while coughing (happens when you're over 50). I wore a scarf to hide the burn on my neck. I was very self conscious. Survived the road trip. Went to San Francisco on Memorial Day weekend and on another road trip next month. I haven't gotten sick, even though I was in bad shape nutrition wise after finishing rads. Just take it easy!

Hi Denise- I'm starting to get a bit worried about my trip in August. I'm flying from Seattle to Philly. Direct, non-stop flight. I do have a PEG feeding tube in and plan on keeping it in for a while. I'm HOPING by then that I can drink liquids semi-comfortably but plan to pack blended food I've prepared the day of as well as my supplemental Jevity. I'm planning on doing a tube feeding prior to boarding the plane and then as soon as I get to Philly. Am I nuts for doing this???!!!!
I am on Day 18 post rads and the biggest issue is the excess mucus and the sores in my mouth. I have a big sore underneath my tongue on the left as well as on top of my tongue on the left. How has your mucus problem resolved? Any better? I'm so frustrated by the excess mucus. I literally can stand over a sink and just drain. It's a constant flow of mucus. When I use my spit cup, I find that I also mouth breathe and then my throat gets dry and I start to cough. And then coughing makes my sores hurt more and then I start to gag. I'm SO OVER this part of the recovery. PLEASE, PLEASE, PLEASE tell me that it gets better. Really hoping that this side effect goes away before I fly. When I fly out, it'll be 8 1/2 weeks post rads.
Tell me I can do this!

Linda- you are a HERO for doing this w/o a feeding tube. I CANNOT imagine trying to consume liquids with all of the sores in my mouth. Sounds like you are doing great! That is one of my goals is to be able to swallow liquids and not use my feeding tube 100% of the time as I am now. You are about 4 weeks ahead of me in recovery. How are you doing with your mucus? Are you having any issues with that? How are you doing energy wise? Have you found a time in the recovery process where you really feel like you turned a corner? I'll be 3 weeks post rads this Tuesday and I'm hoping to wake up feeling awesome! A girl can always dream....right?!
Yes, focusing on the positives are the best we can do! A day at a time......

Denise- One last question. Did you do the TSA Care program? I'm just wondering about packing the liquids and feeding supplies. Also wondering about the Magic Mouthwash since it's a liquid prescription. I want to be sure that everything will go through TSA with no issues!
I can do this- right???!!!

No I didn't, I just packed a small cooler with bottles of protein shakes and checked it, had no problem. Did the same to SF. With the prescription you probably want to take it in your carry on and follow TSA rules. I did have liquid lidocaine with me and it came in 100ml bottles so it was within limits. So if you have magic mouthwash have the pharmacist put it in 100ml bottles. Also, if you take your liquid for your tube feeding through TSA declare it, if you have any questions check their website and call ahead of tie. You will be fine!

It does get better I promise! Keep using the magic mouthwash especially before you try to eat or drink anything. My mouth sores resolved within several weeks and I graduated to Oral-gel. I have no pain now but cannot eat or drink anything spicy or irritating, throat still gets a little raw feeling sometimes. The mucous is still present but is thick and in the back of my throat and doesn't want to budge. But it is not dripping and I don't need a spit cup, it's just aggravating. The mucous was and is the most frustrating side effect for me too. I think that probably two to three weeks ago I turned a corner. My energy level improved and I started eating more normally. We just have to be patient, time is the healer. I am fortunate to be retired because I would not have been able to keep working through this and even now would not be able to go back to work. This is a rough thing to go through! Just hang in there and enjoy your trip!

Not nuts ... just ready to DO stuff again.

I was crazier ... I took a trip in the MIDDLE of chemo and rads. Fortunately, it was right before the downhill turn (not that I could have foreseen that), but still ... in retrospect, it was a darn foolish thing to do. But it kept my spirits up for the rest of my treatment, to have had that special weekend off. I was just a couple hours away from home by car, and very near some decent hospitals, for a woodcarving retreat with some dear friends. Nobody wanted me to travel alone so my daughter went with me. Note: My daughter was all of ten years old at the time, LOL. But it meant she got to do the workshop, too ... we were carving 6" dolls, and it was just so much fun. The instructor rocked, the company was good ... it was good for the soul to have that respite. (I've asked my husband since then why on earth he let me go, and he's said when I get an idea in my head, there's no stopping me anyway, and he could tell I needed it. And all the other folks were really sweet about taking good care of me, making me rest when I started to look over-fatigued. I still can't believe I put everyone through that...)

So ... if this trip is something special for YOU, that will refresh your soul ... go for it! Be careful, of course, and pack for contingencies, but go ahead and do it. Assume you'll need the tube and the medicines and the formula, but be pleasantly surprised if you're able to enjoy a milkshake or something while you're out and about. And just have some fun. Don't overdo whatever the purpose of your trip is. Take it easy. You'll still fatigue quicker than you think. My treatments were in February and March; I think my tube came out end of May or early June. We did take a family beach trip that October (beware of the sun! you WILL have to watch for sunburn for a year or so post-rads) and that was kind of nice because we made it a slow schedule so I could rest as often as I needed ... which was still often. You're doing good with your weight, better than I was, so maybe you'll be further along, but still ... go ahead and be prepared to rest and enjoy resting, just in case.

((hugs)) You'll get there!

I would like to gently suggest that you reread Christine's comments regarding your travel plans. I share many of her concerns. Air travel can be very unpredictable--delays, rerouting, cancelled flights, being stuck on runway and unable to exit plane, etc. Freezing cold or too hot. It can be exhausting and also frustrating. In addition, dry & poor air quality, increased risk of airborne infections.

But perhaps most of all, I don't think you can predict how you will feel next month. Being determined to take this trip can be good or bad. Obviously, something to look forward to and an accomplishment to reach. OTOH, if you aren't up to it and do it anyway, it could be even more upsetting.

I am particularly concerned about the air travel part.I thought long and hard before writing this. I don't want to be overly negative; I want to be cautious. If everything goes just right, it could work out. If it doesn't go right, how would you react? That, I think is what you must consider.

My husband and I are seasoned travelers, both domestic and international. We were worried that he would never feel up to long trips again. We started with overnight car trips and I'm happy to report that by approximately 9 months post treatment we were enjoying long distance travel again.

I was dealing with a lot of mucus. I could almost blow it out of my mouth like blowing my nose. My sweet husband bought boxes and boxes of Kleenex so that I had some close by wherever I was. . And then one day it just stopped. I use a humidifier by my bedside and keep a towel on my pillow that I change daily to catch my “drool” at night but even that has lessened. Seems like that happened around 3-4 weeks post rads. I carry around a squeeze bottle of baking soda, salt and water mixture wherever I go and rinse often.

I have an airplane trip planned in a few weeks but it’s one I have to take as it’s for my MD Anderson follow ups. My husband has to take our daughter back out to Arizona for college so I found a good friend to go with me. I am hoping my energy levels are a bit better by then. I have some early morning appointments and right now I can’t get going before 11 am! Hope I can get up and going in time!!

Praying and believing for better times ahead!
Linda