I dont really know whats going on with me yall. I want to stay in the bed all day. I go to bed tired and wake up tired. I am a few months out of rad and chemo treatment but just had neck disection surgery 2 weeks ago. I was tired before the surgery and continue to be tired. They did blood work yesterday to see if I was dehydrated or if it was my thyroid but all of that came back ok.
Is this normal or is it me? I have never been one to lay in the bed but I just cant seem to get up and go right now.

Billy

BIlly, I can tell you that I am more than a year out from surgery, and 10 months out from radiation, and I still need a nap nearly every day by 2 in the afternoon. As much as I hate it, and I really do HATE it, it's part of recovery.

I was a hundred hour a week guy for the past thirty years; now I can do about 30 hours. I'm told that I'm doing well managing that. Your body has been through a HUGE, life threatening ordeal, and it is completely normal...or at least, it's the new normal. Swing with it, it gets better slowly
Wayne

Billy, hang in there man, You have been through a great ordeal. Rest and sleep when your body tells you to. I can remember a time when Tom went to bed at 5:30 p.m. and slept til 9:00a.m. the next day. I called the Dr. and they said let him sleep!!!

Tom had a big outing yesterday, He was gone from 2:30 til 10:30 p.m. he came home shaking and threw up and said it was worth it! He is exhausted today. He went to see the Steelers at camp. I was a nervous wreck for him. But I think it helped him with his confidence. We even went out to eat tonight for dinner. Something he could not do 2 wks ago.

We are praying for you. LJ

Thanks for the replies yall. Like I said, I have never been one to lay in the bed and this is really different to me. I got up today at around 12:30 and was back in the bed by 2:00. I just got up and its 4:00 and I feel like I can go back to bed right now.

Billy: You and husband had surgery one day apart....I pray that you will continue to progress and that your strength will return quickly....

Hi Billy,

Have you looked into the pain medication you are taking. That was my problem and the reason I had such depression. I couldn't get out of bed, cried constantly and couldn't keep food down. You don't mention the pain killer prescribed by your doctor or how long you've taken it. But hopefully that is what's going on.

Good luck to you and hang in there. You have prayers and support for your recovery.

Actually Im not taking any pain meds at all other than Ibuprofen. I have been taking a sleep aid for the last few nights but I think I am going to stop that also. Maybe a little benadryl right before bed might help. I have to have an EKG ran today because they had to resect my vagus nerve and the doc thinks this may be what is causing the tiredness. I do want to thank all of you who have responded and who help me here all of the time.

Billy

i am 8 weeks out of treatment i did not have any surgery just chemo and rad and i am tired all the time i am forcing myself to do things which is making me ill and my wife shout at me, i can now eat without the peg and started to put a little weight back on which made me feel better so i went clay shooting the following day i could barley walk and ended up doing nothing for three days by which time i felt better so i thought i would go to a dog trial with my wife i barely made it home afterwards and was bad for two days , i have been told that this is all normal and to eat and gently exercise it takes months two fully recover , so don't worry i think that most of us are the same and its only the very lucky ones that dont feel it , I'm a mechanic and god only knows when i will be fit enough for work , hang in there , cheers Allan

Billy - It is normal to be tired and everyone progresses at different rates. My son is about 8 months post end of Rad treatment and is still tired but the doctor says he is OK and not on any more paid medication and goes to work every day (computer programmer). I go to his house twice a week to help with chores. He mows the lawn (push mower) but in sections so his yard has different levels of grass growing! The back yard he just doesn't worry about because it's hidden behind a tall fence. I smile when I see his lawn mowing results because it reminds me how much better he is doing now than he was before when he needed help just getting into the house after his last Rad Tx. My son told me once that compared to Rad Tx, his surgery was a "piece of cake". Maybe you could print out some of other survivors postings and leave them in a spot where your wife may be likely to read them. I did that for my son when he was not paying attention to his medications and food/liquid intake. Sometimes people take advice more easily from someone they don't know rather than from a loved one. Try to stay positive. Things do get better!

Hey Billy,
My neck dissection was on 7/30/07. I'm having the same problem - I am feeling just exhausted and sleepy all the time. I'm having some pain issues still from apparent nerve damage, so mine may have some to do with the pain killers. Still I'm finding I have the same symptoms even when I don't take the pain pills.
My wife is a biologist - she says after a significant surgery like the dissection, your body is working really hard to repair those tissues and recover. And of course, recovery from the chemo/rad takes a long time as well. Hopefully you will start to feel better soon. Selfishly I'm hoping the same for myself too!!
-Steve

I think it might be worth trying l-carnitine supplementation., there are a number of published studies (as well as on-going NCI-sponsored clinical trials) which suggest that a majority of cancer patinets are deficient in l-carnitine and benefit both in energy and mood after modest supplementation.

L-carnitine is an amino acid which is involved in the metabolism of long-chain fatty acids. Many cancer patients, esp. those receiving cisplatin, show depleted levels in their blood.
L-carntine supplements (the easiest to take is the liquid form from GNC) are widely available as many athletes use them to enhance performance. While evidence of the latter is weak (as these people have normal blood levels), the case with cancer fatigue is more compelling.

For example:
L-carnitine supplementation in cancer patients with fatigue and carnitine deficiency
R. A. Cruciani, et al. Beth Israel Medical Center, New York, NY;
(Presented at 2004 ASCO meeting)

Background: Fatigue is highly prevalent in the cancer population and nutritional factors are among the postulated causes. Deficiency of the micronutrient L-carnitine could play a role by reducing energy production through fatty acid oxidation. We are presenting preliminary data of an open-label, dose-finding study to determine safety of one week L-carnitine supplementation in cancer patients with fatigue and carnitine deficiency. The beginning dose was 250 mg/day; doses were increased by 500 mg up to 3000 mg/day. Three patients were enrolled at each dose level. Fatigue (BFI), depressed mood (CES-D), quality of sleep (ESS), and performance status (Karnofsky Performance Status), were assessed at baseline and after one week of L-carnitine supplementation. Results: 18 patients that fulfilled predictors for carnitine deficiency (decreased caloric intake and muscle mass) were accrued to date. 14 (age range=34

And Im hoping the same for you too Steve. This hasnt gotten any better. Im still sleeping about 12-15 hours a day but hopefully I will get through it soon.

I have an appointment with my surgeon,who is also my H&N oncologist, tomorrow Gail and I will bring this up to him and thank you.

Billy