I'm posting this here as it kept getting bumped out of the After Treatment section.

A couple of questions about energy level after radiation. How do you know if you're tired from treatment or if something is wrong? It seems like I had more energy a month ago then I do now. Of course, I'm doing more now then I was a month ago.........but it just seems like my body gets so tired and sore now! We took down the Christmas tree and all our decorations today and by the time we were done I was tired as a baby, lol. Is it common for the energy level to go up and down after treatment? How do we know if it's not our body telling us something is wrong? Thanks guys,
Minnie

Minnie, I`ve been noticing the same thing with Packer, he`s about 5 wks post rad....some days, he full of energy and others he just most of the day sleeping. I do think normal holiday stress has something to do with it too. We`ll see next week when we go for our checkup.I think we all sometimes expect things to get better at our rate, instead of our bodies ! Love, Dee

Hello, Minnie.

What a bummer to start off the new year feeling tired! Thinking back on my husband's post-radiation energy levels 10 months ago, I realize that we worried the same as you are about why the energy level seemed to drop over time rather than get better. I don't think the energy drop in itself is an indicator that something is going wrong, but you should consider: Do you have other symptoms? My husband's radiation treatments were directed at his right jaw near the ear, so he had terrible dry mouth and thrush to contend with during and after radiation. He felt very fatigued for several months, but our doctor at that time told us it was normal to have energy highs and lows. What the doctor shouldn't have dismissed was that not only did my husband's energy levels continue to bounce around like a yo-yo, he had headaches that gradually worsened, mouth pain that wouldn't respond to medications, and pain in his ear area above the radiation site. Those were all warning signs that something was very WRONG, not normal side-effects of radiation like we were told. It was only after swelling below that ear became noticable along with continued headaches and difficulty swallowing that cancer recurrance was discovered.

As you know from my introductory posting, he is now facing major surgery after an experimental run with chemo. We should have gone with our gut feelings, but we let the doctor pooh-pooh our concerns instead.

So, I don't tell you this to scare you, I want you to assess your tiredness in relation to what you've been doing (or overdoing), how you feel otherwise, if you have symptoms that are new or lingering. If you are only just tired, chances are your body is still trying to catch up on all the rest it needs from going through the trauma of treatments.

Christine

Hi Minnie

I would do great for about 3-4 days, then my energy level would just drop to zilch for a day or two. Then be ok for a couple days, etc. Finally learned to pace myself.

One thing I noticed is direct correlation between food intake and energy level, even more so than normal I thought. Usually "lunch" wears off about 4:30 to 5, so that I sleep in the car on the way home (I'm not driving.) Then after dinner, ready for a walk or such.

I thought this up and down with the energy was all related to the treatment, when a co-worker who is a marathon runner informed me no, it's normal, he experiences the same thing, I'm probably just paying attention to my body more.

Now taking granola/snack/energy bars to work for the mid-afternoon low. Helps somewhat.

Bob

Hi Minnie. Nine weeks post rad and chemo, I was back running and feeling like a million bucks. I had so much energy I could hardly sit still. When I started to crash I went for blood tests and found a whole bunch of the chemo still in my system. Things stabilized after that. I never quite got back to the manic level, but I think part of that was just pure joy at being done with treatments and able to run again -- there is such a wonderful freedom in that and I had been unable to do it for a year. I would guess that like so many things, this just takes patience (something I have never had a great supply of), and it will work itself out. I also think Bob is so very right about our paying much more attention to our bodies now. Hang in there! Things WILL be better soon.

Hello Minniea,

I am 8 weeks post rad and I am more tired now than ever. I slept 10 hours last night, got up at 9am and ate and took a nap from 11 to 1:30 ate some more and napped from 2:00 to 4:30. Thats from a guy who never napped in his life. I think it's from the medication and after effects from the treatment. I ready to go to bed now and it's before 10pm. I am going to rest when my body says to. Dan

Hi Minniea and Dan, if your body tells you to take a nap, do so because the radiation still has a great impact on your energy level now that you are still not long from your treatment. I remember feeling very tired for the first two months post treatment but my big problem was I couldn't go to sleep. I woke up at around 8 and then after breakfast and reading newspaper for an hour, I felt tired again. I lay on bed without doing anything with my eyes closed but not falling asleep until some friends or relatives visited me. I slept very little and at night I had to take sleeping pills that could give me only 3 to 4 hours' sleep. My husband said that since I didn't move a lot in the day time, I didn't need to sleep much at night. That was a vicious circle. The extreme tiredness lasted for about 5 months until I managed to go back to my job. Now all my energy is back and my advice to you is be patient and I consider your experience rather normal. When I look back what I did at that time, I can't imagine how I could spend so much time lying in bed.Deep in my heart I know very well it was the power of the radiation that made me behave that way.To me it was a painful memory but am glad it is far behind me now.

Karen stage 4 tonsil cancer diagnose in 9/01.

hi guys,

i'm 2yr2months past chemo/rad so i've been playing the energy level game for awhile now. for me, it was sleeping fulltime for 2 months, then back to work with low low energy and after work naps for the first year. then more energy with afternoon naps. last thankgiving i started a low heart rate exercise program... and wow! am i feeling more energy now. the progression during these two years has been at a rate that doesn't stress me so that my energy is used instead for recovery.

i been reading nutrition books as well as training books for endurance and it seems that Bob said something that is right on the money... not only what, but *when* we eat can make a difference. i usually leave work at 3, home by 4, then sleep till 5. yet in 2004, i want to exercise when i get home.. so the plan is to eat just a bit at 3 to provide the energy for the afternoon workout - then maybe take my nap. i'll have to see how this works when i go back to work next week.

Afternoon snacks!! for energy when we want it.

cu,
larryb

Hi all And happy 2004!

Larry's comments also mesh well with what I found to be true. Exercise helps alot no matter how tired you "feel". Here in the North Woods we have our hunting camps and frequently they are heated with wood stove. I have distinct memories of splitting and stacking firewood in October after my radiation ended in May 2001. The work of swinging the axe and splitting maul felt like it was going to kill me. The fatigue was almost too much...Until the next several days when I would feel GREAT and for weeks I would feel better. I started to look for things that were pretty physical like digging up the garden, shoveling snow. etc.

I also agree that naps are more the norm than they used to be for me. (but I am older now too )

A body at rest tends to stay at rest, a body in motion tends to stay in motion!

Thank you to everyone for the responses and advice. One thing I'm learning is that I certainly do pay alot more attention to my body now then I ever did before. I was always the one that NEVER got sick, the one that could last longer and out do anyone else.........I have taken my body for granted for alot of years now! I noticed in the last few days that I don't eat well enough, I need to eat more and more often. I also realized that the aches and pains I am feeling are ones I have felt before but worry on now. So, I'm learning to be rationale about it all. Guess it's time to realize that my days of being 40 with the energy of a 20 year old are over!
Don't know what I would have done if I had lost 30-50 pounds like some on this board. I only lost approx. 15 in all and have gained back 10 of it.
Take care everyone and again, thank you!