Hello all,

Been since my last day of treatment since I've updated anything -- been a combination of busy, lazy, self-absorbed and not a little on the sick side.

So, with that rather weak explanation in place, let's talk turkey -- the road to recovery, now three weeks in. Here is what I've noticed in particular -- as advertised, I actually managed to feel considerably worse over the last few weeks than ever i did in treatment with one very notable and happy exception -- the skin on my neck (the outside at least) healed very rapidly and is now, for all intents and purposes, healed and pain free. There remains a small amount of that dark skin and a bit of the rough hamburger skin (maybe an inch on one side) but I can report that, for me at least, it was a very speedy recovery on that front. I'm quite happy about this because I will not lie, when my skin started disintegrating In the last week of radiation it hurt like hell and I really felt like one more side effect was going to push me over some imaginary line. Having it stop hurting and then heal so nicely really makes one small part of my day.

Now for the rest of me, well, not as grand. My throat continues to hurt like wildfire and I find swallowing incredibly difficult, although I do as much of it as I can force myself to. The mucus in my throat now gets so heavy that I swallow too much of it and vomit like a fiend for the day (which hurts like hell and seems to aggregate the many, many mouth sores I have) or gets so thick that I hack and back until I trigger some gag reflex and vomit like a fiend for the day (see issues with that above). Mucinex seems to help keep it a bit loose, but then it seems to gather too readily. I can't use my WaterPik anymore because almost the instant I turn it on I vomit like a fiend for the rest of the day.

So, let's just say I'm not loving this. That said, aside from some occasional tears (my poor wife, who has to put up with so much and then has to see me cry in her arms every few days ) I am generally confident that I will eventually recover.

That said, any veterans have any time table on the symptoms above or is that unique to me and my situation?

Anyway, I have done some reading, sounds like my class (yeah those of us that started around the same time) are generally doing well but seem to have gotten a bit quiet. I hope most of you are doing well in your journeys.

The recovery journey is the hardest one, I've heard and so far thAt seems to be true. I do sincerely hope this doesn't go on a year or more -- I am preparing myself for my new normal, no but it can't be this!!!

I will update he recovery here for those that are interested. Thank you to all whom have contributed so much support and sent so many well wishes. It is so good knowing we're not the first to have travelled these roads.

Cheers,

The Hellion

Hang in there, very soon you should begin to feel a little better. Keep working on what you have within your control... your intake. Every single day right thru until you hit your year post rads mark keep pushing yourself to take in the minimums of 2500 calories and 48-64 oz of water. Thats what will help you to recover, taking enough in every day.

Its surprising to me your neck healed so quickly. Usually that takes a little longer, so you really are making progress. I know its hard to see it when you are in it.

Its usually right around when most hit the 3rd week after finishing rads when they wake up one day feeling slightly less crappy than they did the day before. You will experience lots of ups and downs during the next couple months. By the time you are 3 or 4 months post rads you will be feeling almost like your old self. You will notice improvements in your taste mostly during the first 6 months, even after that it will keep making gradual improvements. Keep in mind, recovery can take a full 2 years. Your body has been thru the war and back so its not going to bounce back immediately. Especially since radiation in continuing to work even after you finishing your treatments.

Hang in there! The worst is over. Its all downhill from here.

Sounds like you are having way too much fun! The bad side of the vomiting is it will dehydrate you quickly. If your gag reflex is ultra sensitive you might consider a portable suction machine. Makes the problem much more manageable.

The newness of the goo sliding down your throat is causing the gag reflex. If you can relax, breathe deeply and let it slide, it would help immensely. As you get more tense about it, your body gets more sensitive. The nervous system is already in heightened mode.

The goo is nasty stuff and much better to get it out. It is a lot of things sloughing off and being expelled by the body for a reason. It usually starts out brown and gets gradually more clear as things heal/regenerate.

Try to just roll with it all. Sounds easy on paper, I know, but a lot of the immune system bashing is taking a cumulative toll. It will get better.

Christine, Upown,

Yeah it's a hoot, but not quite an anny. Glad to read nothing sounds terribly out of line with what you guys expect.

Most days I manage 2500-2800 calories - nit quite enough, but I really can't seem to jam more in. I did gain a pound or two back, though, a couple of weeks ago before the new vomiting started, so that was encouraging.

I spend all day drinking water and Gatorade so I think I'm ok there as well. The vomiting days, though, (about 1 in 3) mean I lose ground at least on food. I really, really need that to stop and I will say it brings me nearly to despair sometimes. This mucus is spectacularly different from any of my experiences and it does sometimes worry me, so it's always good to get some reassurance from this amazing community !!

At any rate, I expect I can survive this and plan to, but I really hope I start turning some healing corners soon. I need the mouth sores and the nausea/vomiting to stop, and sooner than later!!

Thanks again, guys!

The Hellion

I did not have excess mucous but I hear some folks use a suction machine to suck all that nastiness away.

The waterpik has that spoon attachment. Try the salt/baking soda solution and turn it low and that might work a bit better. Hang in there, you'll be turning the corner any day.

Don't worry brother your class is still here. No two journeys are the same are they? By comparison I am sailing through. Thrush, constipation, pain, nausea, mucous, hydration, neck skin healed, all ticks in the "under control" category. Its still tough, and only a couple of those are in the "gone" category so don't feel alone.

Why are you in pain? You should be well on top of how to manage that by now. You should be on a baseline of oxycontin and paracetamol, with some sort of breakthrough pain relief for surges. Do you have that?

Maybe you actually have a "sore throat", as in a cold/flu type illness that is causing this inflammation and congestion?

What are you using the Waterpik for? Its good for getting the crud out of the gums in the morning but I wouldn't shoot it to the back of your throat to clear mucous, that will just make you gag.

You're not alone in the tears either, its a frustrating stage. I spoke to a friend who went through the same thing the other day. He told me to keep eating, stay positive but most of all be patient!

If you havent already gotten this, ask for a prescription for zofran. It is for nausea. That might be something to help you get past all the vomiting.

Best wishes!!!

Hellion, ChristineB's suggestion is a good one. The nausea has to do with the central nervous system and not one's tummy.

Hellion,

I went thru the exact thing you are now in my week3-4? of recovery.

I had thick nasty phlem/mucus that just hung out right above the back of my uvula. Any attempt to dislodge equaled a trip to the bathroom to vomit. My stomach got weak and the gag reflex became even easier to trigger.

All I can say is it will pass. I tried Mucinex and it didn't really help. Its one of those every 4 days things for me. It seemed during recovery there was a new and different battle every 4 days. I remember soda water and ginger ale being my friends during this time frame. They both provided minor assistance.

This will pass in a few days, I think it was about 10 total days like this for me.

Hellion, I started rads a little bit after you and the main focus was more towards the front of my mouth. Maybe that's why I haven't had a sore throat. My pain was controlled very well during treatment by Controlled Release Oxycontin with Immediate Release Oxynorm for breakthrough pain. Can't sing the praises of that pain relief enough.

Like you my skin was the first thing to clear up ... took just under a week for the dead skin to slough off and splits to heal.

I really hope the vomiting ceases soon. I've been moaning about losing my taste but heck, I've had an easy time compared to you. Just hope someone can medicate you to stop the pain and vomiting or that time itself works its magic.

Regards
Maureen

I agree with Alpaca there Hellion. That Oxynorm liquid is great for breakthough pain. Just don't do what I did first time, use the syringe to squirt it straight at the back of the throat! Ouch!

I carried a small styrofoam cup in my pocket (gross) and spit in it constantly. I say spit but it was more like dribble because it was so thick. My crap lasted about 2 weeks and then the dry mouth took over.