Wayne,
what Steve said about keeping your skin hydrated is good advice but MAKE SURE that it is clean and dry just before actually having the radiation treatment. Many creams, lotions and such can act as a "bolus" and enhance the skin damage.

Many of us, like myself, had nothing more than a minor sunburn from the radiation. Even if you have a bad reaction to it - it will be the first area to heal. Ask the radiation nurses for some "Radiacare" to put on it. They usually have it. When you start to get late in treatment it will get itchy -DO NOT scratch it. My MO gave me a steroidal cream and it stopped the itching immediately - I only had to use it a few times.

Wayne, I've found the radiation MUCH easier than the PEG tube installation (2 of 'em) and the Chemo. Radiation goes quickly. Are you getting a face mask for radiation? If so, I found that it helps to ask them to cut holes out for your eyes so you can see the machine moving around. Makes the time go faster, and I just couldn't stand to have my eyes forced closed for the procedures.

I also decided (and got it approved) to use an OTC lower mouth guard to protect my tongue sides from squishing against my many fillings (because of the dumb bite stick they insist on using) and burning/blistering big time. Gauze pads just weren't cutting it. Both the doc and the techs are amazed at how that guard has cut way back on the damage. Check Long's Drugs by the toothpaste section, put out by Doctor's, it's a teeth-grinder night guard designed for upper, but you can use it on the lower just fine. Easy to self fit and worth the $25.99 in cost.

You might also try damp washcloths to put on the burned areas of your face/neck after radiation to calm some of the burn. I like Biafine-RE cream after a treatment and just before bed (deeply hydrates the skin to keep it from drying/blistering/infecting), but needs to be washed off and totally dried before each treatment. Says Rx only, but I ordered mine online with no Rx.

And I was told that the worse of the radiation side effects would ramp up until about week 4, then plateua, then taper off as you heal after treatments. Mine have never been bad enough to need the use of the PEG tube yet. Sometimes painful to swallow, so go for Barcus Solution (numbs, ask your doctor), soft cool foods like lukewarm cream soups, yogurt, frozen yogurt, and liquids like Ensure or Jevity or similar with protein powder.

I have tons of hope and increased emotional energy after having reached the halfway point in radiation. That's the easy treatment. Surgery is much worse, in my opinion, and chemo is no walk in the park.

You'll make it just fine!

Sharon

Sharon,
Are you getting IMRT radiation or some other form of gentler radiation? I have never heard anyone in my three years on this board talk about radiation as if it were "easy". Certainly not anyone saying it was easier then surgery or having a PEG tube installed???? I just want to make sure we don't mislead anyone. If you finish out your radiation treatment with the obviously minimal side effects you are having, you are one lucky woman and I'm thrilled for you! But, that is not the norm with radiation treatment.

Sharon,

Like Minnie, I did a double-take when I read your post about radiation being easier than surgery. I re-read a couple of your other posts, and it sounds as though you haven't had surgery (because it wasn't a realistic option in your case) and are only a little way past the halfway point in your radiation. The vast majority of us who have completed both surgery and radiation can tell you that surgery was indeed a walk in the park compared with radiation.

Wayne,

You've gotten good advice from some of the prior posts, so just try to take a day at a time and use the support that your wife can give you when you need it. (As far as the relatives who are making things more difficult -- if they're not part of the solution, they're part of the problem and I hope you can either avoid them for the time being or else get them onto this site where they can learn what they should be doing to help you.)

Cathy

Minnie, While I am very glad to hear that Sharon is doing so well with radiation, I agree that it could be misleading. That being said, I think I remember Danny Boy saying that the radiation wasn't too tough for him. Hope Sharon continues to do well. Amy

Hi Wayne,

It was tough for John to get through the radiation but, as others have said, the one day at a time approach worked for him. Also, in his case, he was not too bad for about a week and half and then his throat and mouth got very sore. We were so lucky that they had installed a PEG tube because when the swallowing became difficult he was still able to maintain his nutrition most days.

One thing I always try to point out is to remember to ask for laxatives/stool softeners if they began to give you heavy pain killers like codeine or morphine. John suffered unnecessarily from very painful constipation near the end of the second week.

It seemed like John got a lot relief from the seemingly small things like rinsing regularly with water and baking soda, applying warm compresses of lightly salted water to his red skin, and finding a comfortable place to sit when he was feeding through the peg tube.

Reaching the halfway mark was a big help emotionally. If you haven't already, it would be good to direct your wife to this site because there may be times that she can get some very good answers to questions- especially when you're in the thick of the treatment.

Mary

thank you all for your frankness and encouragement. I'm so close to being emotionally wrung out that I'm not sleeping despite the anti-anxiety meds. I've never suffered from depression before in my life, nor have I ever had anything more serious medically than a bad cold, so this whole ordeal has been completely devastating. I appreciate you all telling it like it is, not necessarily how I "want" it to be, but how it is.
Wayne

Welcome to the club Wayne! I didn't even have medical insurance when I started the great adventure (thank you Joanna). I was healthy and had quite all of my bad lifestyle choices many years earlier. I was really gambling then. For most of us this disease has come from out of nowhere so we can relate to how you feel. Sleeping is good and you will do a lot of it because of the natural cancer fatigue effect.

The most trying time is the post Dx pre Tx stage.

Wayne, perhaps you would feel better to break this down into small parts. Basically, to begin, you will have a mesh face mask made. This is to keep your head positioned securely and to mark for radiation aiming. Then you will have a simulation which will generally take longer than your daily treatments will. There will be no discomfort, other than the hard table, for the first couple of weeks. Then your taste will go. Some people have a harder time than others, but as many people have pointed out, taking it just one day at a time helps immensely. When I was getting near the end of rad, I would look at the other patients waiting for their turn and realize how lucky I was, compared to most of them. Never forget that having radiation is NOT the most terrible thing that could happen to you. I am a believer in self-fulfilling prophesy and decided, as Gary reminded me, that I would treat this as a Great Adventure. I approached each treatment with a positive attitude and I think that helped. You really don't have much to worry about now. Treatment has been decided and all you have to do is show up. Never forget that these few weeks are a very small part out of your life. You can do this, Wayne, and we will be here very step of the way to encourage you. Sure, this is a mountain to climb, but it is not the Alps!

Wayne,

I have 7 RAD treatments left of my 35. Like Sharon, I really have not found it to be that difficult. The treatments themselves are pretty much a non-event to me as soon as you get used to the feeling of the mask and the bite stick. I have actually fallen asleep several times on the table, so it really hasn't been hard for me.

The side effects of RAD differ for everyone. I have really thick saliva and a sore throat that can be managed with 600mg of Motrin. I do not have any other sores in my mouth and my neck is in great shape. Truthfully, I think chemo is 500 times worse than the RAD. It is not a fun time, but you will get through this!

Good luck!