My radiation journey - Week 5

stevenpepe,

At this point (as you know) do whatever it takes to get finished.  Remember, you can always drink your calories.  The taste no-taste, awful feel and texture put me in touch with liquids.  Keep drinking water and swallowing.

Matt

Sounds like you are nearing the finish line.  Hang in there and I hope to do this well as I approach the end. As Lise said, eating that many hamburgers at one sitting is pretty amazing to me at this stage.

Freddie

Stephen,

You're doing super great. If I recalled correctly, I was on a full liquid diet starting from week 5 onwards. You can still munch down 3 hamburgers! that really rocks, keep it going! Only thing I suggest is going easy on the acidic stuff (e.g. BBQ sauce) as it quickly makes things worse (as I found out). 

If you need to transition to liquid diet, I went heavy on pasteurized eggs on soft boil. since they're pasteurized, it minimizes the risk of bacteria and you can eat them soft boiled. 

2 more weeks and you'll get a break, and it'll still go downhill for 1-2 more weeks before it starts to plauteu and recovering!

Steve

Lucky you. Ice cream was,a no no for me early on. The temp and taste just didn't sit well with my tongue. I thnk I've said it before I think you are doing great. Beware this final week and a few weeks after posed the biggest challenges for me. I do feel like the worst is over now but getting here was not fun. Keep eating, taking your vitamins, brushing, gargling, and anything else the doctor suggested and stay hydrated. I wouldn't push continuing a variety of foods unless you are absolutely sure it wont  hurt. As I look back I thnk there were times my mouth was too numb and I suspect some foods may have added or caused the blistering on my tongue. Also working and keeping too busy can cause lapses with the meds. Stay on top of things and you will be there before you know it. 

Have they said anythng about phase 1 or phase 2 radiation?

This was "the straw that broke my back." Being vegetarian probably had something to do with my difficulties. 

Hang tough. Those of us who’ve been through it know how tough it is. By about week 5 or so I was strictly on a liquid diet. My appetite was so poor, were it not for my wife making my shakes (Ensure, vanilla ice cream, powdered milk, and sometimes honey), I wouldn’t have the energy to even bother trying to eat anything. I also remember at least a few times where I would struggle for about a half hour to get the shake down, only to have it come up minutes later in a violent and unpredictable eruption.

At about week five or so, I had started on the narcotic pain killers. I’m all in favor of anything that works, so if they work for you, go for it. For me the pain killers didn’t work out well at all. Within a week or so of starting, one or two oxy tabs every six hours escalated to six every six hours. I wouldn’t mind if they killed the pain and put me into a stupor, but they didn’t kill the pain, and made me paranoid. Not only that, but despite laxatives and stool softeners, about once every three or four days, I would go through labor and give birth to a bowling ball. To make matters worse, things from the waist down stopped working.

My doctors kept telling me how good I was doing, and although that was intended to be comforting, that only got me annoyed. I felt the only way I would ever meet the patients that were doing worse was to visit the morgue.

I hope your doctors have been honest with you in terms of your expectations, but it was at least a few weeks after the radiation finished before I felt I turned the corner and started getting better. My recovery was not as quick as I expected, and it did not follow a straight line. There were peaks and valleys along the way.

My radiation finished on July 30, I was in decent shape for one daughter’s wedding on September 8, but that pretty much wiped me out. I had started eating soft foods about two weeks prior and was able to have some of the food at the weeding (but couldn’t get the cake down). The next day while attending the birth of a new grandson from a different daughter, the only thing I could focus on was how miserable I felt and how much pain I was in. Later that week, I saw a pain management doctor who wanted to put me on methadone, so I decided to stop all the pain meds and just tough it out. It was about late September before I was able to return to a regular work schedule and had enough confidence in my speech and appearance to meet with clients.

I really wish you all the best, and hope your recovery is both swift and full. Despite how annoying it might sound, you really are doing well, so keep on keeping on. Just don’t take your eye off the prize. In time you will be cancer free, resume all your prior activities, and fully enjoy your life (even if there might be some enduing side effects). 

Good to know about the liquid Oxy.  Is this a swish and swallow?  

My doc said it's easy. He knew I was already iffy about treatment.  Everything I learned about side effects, I learned from the experts here!  Doctors aren't going through this, so they tell you whatever they want.  I want to see a Head & Neck Doctor/cancer patient, then we can talk!

Enjoy your past and lentils. I used to love Italian food before I had to give it up because of Celiac disease.  Sure there are gluten free options, but they don't taste authentic!

I am very much in appreciation for your documentation of your radiation journey.My first day is tomorrow and although everyone is different your blog is so very helpful.If i have the strength I'll write about my experience. Thanks again.

I used to eat scrambled eggs, shakes, smoothies, and milk toast. Butter toast and pour hot milk on it with some pepper for taste. I am surpridsed you could eat beef so far into treatments I lost my taste for meat about 2 weeks in. I bought  a blender that also heated the content so I made alot of soups with freesh vegetables also. You are doing well fight on the finish line is in sight.

      Jeff