My radiation journey - Week 3

Good luck Steve. Keep up the positivity pain meds so you can eat and heal each day before a new dose. Enjoy your weekends and don't make Ss anymore days. I was warned about that. Wish I had that oxy right about now. Pain is pretty severe even now that it is over. 

I'm being discharged today and right outside my private room door where the masses are separated only by a certain if they are lucky there is a young boy suffering from cancer. This all puts things in perspective and really makes my heart heavy.

Best of luck.

Might I sugest 2 of my favorite things to eat right after my radiation ended: French toast & scrambles eggs (bacon no-go), Subway meatball marinara not toasted (oops it has tomato sauce) but it really worked for me. Watermellon is great it has the highest PH of any food on earth. Also due to lack of mough and tongue muscles I found it noce to just squish my food with ongue against the roof if the mouth since chewing wasn't working so well. 

How vividly I recall the salt water swishing. Also my voice totally went so I developed hand signals to help talk. Even folks at the post office could understand what I was "saying". Later when my voice came back I sounded like my tongue was always in the way, but 6 months later that improved.

-Craig

Hi Steve. Sounds like you’re a carbon copy of me four years ago. Tongue cancer, hemiglossectomy, radiation, treatment at Sloan in New York City.

Sounds like you’re handling everything about as good as anyone can handle it. I think a good attitude and a positive outlook is 90% of the battle, so stay strong and stay positive. I finished my radiation in July 2012, and cancer free since then, but I do have to admit to a batch of very annoying side effects. Hopefully you new normal will be not be far from your old normal.

I didn’t keep a detailed log of what exactly I got when, but  I recall that I continued working until about 4 weeks into the radiation and was able to manage the pain without narcotic meds until about that time. I do recall due to the sores in my mouth, there were days starting around week three of four where talking in more that single words became too painful. Once I started on the narcotics, at about week 5, I stopped being able to drive, so that made a big difference to my sense of normalcy.

At the end of my fourth week, I made a slide presentation as my way of communicating with my friends, and here is the link on youtube if you want to view it. https://www.youtube.com/watch?v=7kHMNmIaPqg

If you view it, (warning – I have a very sick sense of humor which didn’t get any less sick as the treatment progressed) you can probably tell I was starting to have difficulty talking. Also shortly after that the skin on my neck which appears red on the video broke through. I noted your concern regarding the marbles in your mouth. During my treatment, I did get some speech therapy at Sloan, and that did help. My speech has returned to about what it was prior to the cancer, although toward the end of my radiation speech was painful and very slurred. In fact I was starting to communicate by writing notes. Things will get better.

I do remember one of the highlights of each day was a visit to the nurses station before the treatment. The mouth rinses they gave me were a big help, and they were all so nice I always left feeling good.

Like you, I set objectives for concluding my treatment. I wanted avoid a feeding tube, narcotic addiction, and any complication requiring hospitalization - mission successful on all three counts. 

I wish you all the best. Keep in mind that as bad as you may feel on certain days, have patience, as thing will get better. That was true in my case (although the recovery wasn’t quick enough to suit me) and I’m sure it will be true in your case. Even your beard will eventaully grow back (emphasis on eventually).

Loved it, watched it twice.  When I was three weeks into rads, my oncologist very solemnly asked me how I was getting back and forth to work and rads each day.  I was surprised by the question and said, by subway, like I do every day.  And he replied, you know you don't have to worry...the radiation to your body is of no danger to anyone.  And I burst out laughing and said, I never would have thought that in a million years!  Anyway, your vid reminded me of that so thanks for the laughs, Bart.

Steven, you're doing great.  Don't worry about the hair loss.  I lost a lot in the back but it's pretty much all grown back a year later.  Most of the women I met at MSK undergoing chemo cut their hair short so as to minimize the trauma of seeing hair fall out on the pillow and in the shower each day.  I admired them so much...Warrior Women!

Did you drink the L Glutamine Raddude, or used it to swish and swallow?