it is just heartwrenching at how severly burnt andy is. his skin just falls off. i dont know whats worse...the dry, flaky burnt skin on the top or the hot pink skin underneath. it looks horrible and painful. although he doesnt complain about the outside of the neck/face. he said his pain is coming from inside.
i read some other posts about aloe vera plants. my neighbor has a HUGE one, i am going to get some to put on his face/neck.

he was red and dry at the beginning of last week, but after completing his treatments (finally got thru all 5 in one week), it is bad.

he is still in alot of pain. he just got dialed up to 50 on fentynol (i know that is still low). but the prior week he was on 25 and it was managable. now, hes on the 50 and taking vicodin, and still in pain. he just put the 50 on earlier today about 2pm. has it had time to start working??

he isnt taking anything orally at this point. i do make him swallow several times a day though, so he doesnt lose that ability. he just looks at me like i am trying to hurt him by making him drink. i know its all for the best though.

he can barely talk. only a little whisper here and there. today, at the RO...she is normally so calm and cool and when she looked at his throat--i saw her eyes get huge and she looked worried.

i know we are going to get thru this, he is soo close to the end of treatment but geeezzzz...hurry up already....im gonna have a nervous breakdown! time seems to be at a standstill.

thanks for letting me ramble on...

Teresa:
Ramble all you like. Time and talk heals! I forgot that "Burn" until reading your post. I agree with Andy, the inside was more of a concern than the outside. My RO recommended Aquaphor sauve. It seemed thicker and more moist than vaseline and many other products we tried. Janet also used Aloe which provided a "Cooling" sensation. Most here also have an intimate relationship with lack of speech. Keep him swallowing but as far as speech I used computer and a wipe off board. My brother found us a website that actually spoke what you typed (Text to speech website). At that time it was a female AVATAR and voice but it was free and helped a lot so it didn't matter to me. It's very easy to close that mouth and shut down right now. Keep him swallowing, drinking, and talking as much as possible.
Best Wishes,
Steve

Hi Teresa,
I'm so sorry to hear that Andy is going through such a tough time. My skin didn't break down until the week after treatment and it went a deep crimson colour and peeled off. I was given an ointment called 'solugel' and then I had a waxy dressing over that and then a covering. This worked quite well but I found my daily shower a real challenge - that was when it really hurt.

I also pretty much stopped swallowing for a couple of weeks but am able to swallow water now with no real problem. You really do get to a point where it is pure torture to swallow anything, so don't be too hard on Andy if he is reluctant to to do it while he is at his worst.

I think that I spent about 3 weeks in a really dark place and I know that I barked at anyone (especially my husband who is also an Andy) who tried to push me to do things, especially when they might cause pain. I am still reluctant to swallow but I think it is more the memory of the pain, than the small amount that I now have.

I wish I had something that could make this easier for you both, but Andy does still have a way to go before he starts to feel better. Hang in there though because this time next month he will have emerged from that dark tunnel................

Good Luck
You're in my prayers

Sue

Hi Teresa, You and Andy are coming to the end of this rollercoaster ride but it's not over just yet. But keep that end in site. Your a wonderful caregiver getting Andy to swallow and caring for him so much. I can tell by your posts that he's your main concern and that everything you do is with his best interests at heart. Even if he gets cross with you when he comes back out of this tunnel he will appreciate the way you were there for him.

His neck sounds painful although his mouth sounds worse. Steve didn't get too bad on his neck. Once the darkness appeared on his skin our doctor gave us a script for some cream called silverzene. great stuff but leaves a dark mark on the skin (but washes off). We'd rub it on twice a day really thick. Steve's skin would just absorb it. It worked well and he never really complained about his neck being sore (although he is one of those males that doesn't complain). The inside of his mouth was ok until the last week and it appeared to get worse after his last chemo.

When Steve had trouble talking we used just note pads and pens. He used to carry them around in his pocket so he could write down what he wanted to say. Only problem is that pen and paper came out everywhere. Even while he was driving down an expressway doing 110km an hour. Very unnerving watching someone try to steer, hold pen, hold paper and also write and watch the traffic. Gave me a few grey hairs that day I tell you. We also had our own personal style of sign language which I'm sure you've developed that already.

Hang in there girl, Andy's a young fit man like Steve. You will both get through this. Come here as much as you want to, to vent. Trust me, I did and I couldn't have coped without it.

thinking of you both

Wendy

I spent the last 3 weeks of treatment with a homemade hood to cover evey inch from the sun when I left the house. Soaking in a tub to let the scabs come off my skin helped with the discomfort and stifness.
It was also about 3 weeks post treatment before I could speak above a whisper.

Re Flip,

I never got any scabs, even though I had open weeping wounds. The treatment I was given was designed to keep the wounds moist all the time. It healed really well, within a week or two with nothing apart from light pink skin to show for it when it healed over.

I think most wound/burn management treatment here is Australia is now based around keeping the wound moist while healing.

Sue

Teresa

I remember all too well my "Crispy Critter" days. None of the creams, lotions, etc helped anymore, but I finally got the doctors to write a prescription for VIGILON which my wife drove to a medical supply store to get as none of the pharmacies had it. It is a gel like dressing that you put into the refrigerator and when you put it on that burned crisp skin, the relief is palpable & immediate. I have had third degree burns that hurt less than the radiation which made all the skin on my face and neck just hang there in crisp little shreds. Only Vigilon worked because it soothed everything and hung there like a second skin so I could sleep. Plus when you change it, it takes off the dead skin and the new skin can grow easier.
Charm

we got given a vat of aqueous cream. i used to cake martin in it. it seemed to help a lot. he never got dry skin, he instead had moist burnt (somewhat smelly) skin. But when the skin fell off there was new pink skin underneath. he was also prescribed this gel type cream which was to act like a second skin (probably the same thing charm said), but he never needed it.
Oh we also had this very fine cottony gauze type scarf that wa disposable, and that we used to cover the skin and stop the clothes from rubbing.
I hope You find something to sooth Andy's skin.

Sue G, I agree with Australian dr's tending to keep the skin moist. The creme that they gave steve was very thick but would absorb well. Even though it absorbed it left a moist residue on his skin. His skin never got too bad and what burns he did have started to heal really well almost as soon as radiation finished. I think keeping it moist played a big part in that.

Be sure all cream is wiped off before a rad Tx.