It's been two months after treatment. Jim is getting stronger; he tilled the garden and planted eight tomato plants a couple of days ago! He has been having some fairly good days. HOWEVER, this morning he was in terrible pain and sick just like it he was two WEEKS after treatment. It is so discouraging because he thinks things are leveling off and he's on the road to recovery, then he'll have a bad day like this. It is so unpredictable! So I was wondering if you experienced these bad days every once in a while during recovery? And if so, do you know what causes them?

Thanks,
Debbie

Deb,

At Jim's stage I was still happy to have a good day when I could get one. It's still early in the healing process so I would not be discouraged when a bad day hits.

They will become less and less frequent as he moves on out from the hard hits his body just took. As much as we would like to rush it and get a normal life back, it just takes time.

I can say that somewhere about 4-5 months out I was feeling much more alive and feeling good about being active. I'm 7 months out now and I do have many annoyances from my treatment but small stuff relative to how I felt at two months.

I don't think this is ever over, but it should start getting easier to deal with soon.

Deb,

It's common to have goods days followed by a bad day or so and so on. I know I did but eventually all the bad days will give way to all good days (relatively speaking) so tell him it's just normal.

Thank you so much guys. It's always nice to know when these side effects are normal.

Have a good evening,

Deb

Deb.... what they said.

I actually don't remember ANY good days for at least 3 months post-TX. So Jim is ahead of the game!

Hang in there, the worst is over!

D2

Hey David,

I had to chirp in and say that every day I did not have to have my head bolted to a table and blasted with x-rays was a good day, even if I spent most of it asleep, which I did for a good number of days after treatment.

As bad as I felt I could always find the good side. Actually that would be the left side, which is the side I had to lay on to see the TV from my couch LOL

Remember I said good days (relatively speaking)!!

A good day for me was being able to take a shower without feeling that I had just completed a marathon; that I wasn't tossing my cookies every hour; that I was able to eat anything solid and that I actually believed that the worse was finally over! Remember after being run over by a bus we must take baby steps on our path to recovery.

Deb, I am kind of like your Jim. I have a few good days and then Wham and few bad days. Most of my bad days conssit of shear exhaustion and nausea. I try to remember what I did the previous days so I know if I did too much. Like the other day I was feeling really well and mowed the lawn. Well, the next day I paid for it. I was so sick I could barely get out of bed. He is not alone. I think all have that roller coaster ride.

At least when we feel drained we can blame it on former treatment...not that we are getting older!

Yes and let me clarify - Jim's "good" days are those when he can get through the day without nausea, can down two servings of Carnation Inst. Brkfst, and have a decent b.m.! But, hey, we're thankful!

I promise it will get better. As bad and as weak as I was post Tx, by 9 months out I was back to riding my bike with the big boys and being much lighter (LOL) and with an extreme case of determination I was actually a better rider than before Tx. Now I'm back to the same, maybe even worse, since I'm 4 years older and I've gotten over that "I'll show you" attitude. ugh.

"Yes and let me clarify - Jim's "good" days are those when he can get through the day without nausea, can down two servings of Carnation Inst. Brkfst, and have a decent b.m.! But, hey, we're thankful! grin"


Yep, those would have been stellar days for me too!

D2

Hi Deb,

My dad was diagnosed w/stage 3 oral cancer in Jan 10. He had 35 radiation treatments, and I believe twelve chemo treatments. His long term stats are good according to his oncologist & radiologist, but he still feels pretty terrible. His last chemo was on 4/12/10, and last radiation was on 4/16? Somewhere that week. He is on the tube, and pretty much refuses to eat much of anything. He say his tongue is painful. Like on fire. He is 70 yrs old. Never been sick and a non smoker for eight years. Extremely active. Now, he just sits in his chair watching tv. Kind of miserable. I absolutely refuse to ask how he's doing, cause I know he's very down, and still in alot of pain. When does it go away?

Christine, welcome to OCF. Its always best to start your own thread especially when first joining OCF. That way your post doesnt get lost and both posts will get the attention they deserves.


Finishing treatments in April isnt even 2 months ago. It can take 2 years to return to a somewhat normal lifestyle. Of course, the younger you are usually means the easier you will have it. Everyone is different and will recover at their own pace. It takes months before eating will resume and that is a very slow process before progress is seen.

If you know your father is struggling, please show some compassion instead of refusing to ask how he is. A few words of kindness and understanding can go a very long way in helping your dad to feel better. As a 3x survivor, your statement hurts my feelings and Im one tough person! Many oral cancer patients take antidepressants to aid in their mental well being. Nobody can know how truly horrible it is to go thru these treatments unless they have done it. Caregivers dont have it easy either, but they arent the ones who are in pain and want so bad to eat but cant. Now that the weather is nicer, maybe a short walk in the park or even a ride on a country road may help him to feel better.

Please take some time to read thru some of the posts and info on the main OCF site. There is even a special section for caregivers, maybe that could give you more info.

Best of luck to you both.

I still understand the ups and downs. Rex still has good days/bad days. If he does too much on one day he has to rest most of the following day.

If you don't ask your father how he's doing, he may think you don't care and you don't want that. My husband has been dealing with panic, anxiety and depression in a big way since treatment ended 7 weeks ago. Sometimes it's hard to know what to do when someone is feeling this way. One day I just asked him "I'm sorry you're having such a terrible time and I'm not sure what I can do to help you, so please tell me what you need. " His answer was, "Just be there for me when I reach for you." So that's what I do. Aside from the other caregiving duties, emotional support is crucial. It can be hard when as a caregiver you're anxious and depressed yourself, but it's important to try.
Anne