This is a bit unorthodox, but when I was diagnosed I refused to let my chemo or radiation oncologists inform of the side effects. They didn't like that, but I told them they could inform my caregivers(my fiancee and my ex-husband) if they so desired. Most of my time was spent away from home, as I stayed in the city where my treatment was and went home on weekends. My ex-husband kept me busy with things that he knew I loved. While I did not exercise, I did get up at 6AM every day, got my treatments early, and usually did not arrive back at the condo 'til about 6:30 at night. Alot of times I was just curled up in the front seat of the car being chauffered around, but at least I was up and out. I never napped because I am not a napper. I did rock climb, but it was in the safety of a rock climbing gym. It was a spur of the moment thing(I had never done it before), because I thought I was going to watch my daughter climb. I was strongly encouraged by my Ex and my daughter to go for it, so I did. I had been curled up in the car for a couple hours beforehand. I set goals for myself for the end of each week, and surprised myself(and my doctors)by attaining those goals. I spent a little more time on the couch when I went home for the weekends.My doctors are mystified by my success. I must note that I did receive acupuncture every week. When my radiation oncologist looked in my throat last week he said "You would never know you were treated." I goofed around alot at chemo, and tried to keep my sense of humor. I was allowed to have my PEG tube removed at 3 weeks post Tx. Also--I didn't fear the radiation or chemo while undergoing each treatment; I looked at it as healing. I did not come to this website until I was completely finished with treatments---because I was avoiding hearing about side effects. I know that everyone reacts differently to treatments, but I hope this can give inspiration and hope to someone. I do believe a certain amount of normalcy in daily life can help take one's mind off the treatments.
Margaret---while I wouldn't force your husband to go for walks I absolutely think fresh air would help. Do you have a comfy lounge chair? If not you should get one. One more thing--when I was low on fluids I always felt worse so keeping up on the fluids should be insisted upon. I had caregivers that were adament about fluids. Best of luck to you.
Teresa

Margaret,
I think JAM hits this on the head. Although walking may be a good idea I would not provide to much "encouragments". I for one certainly have a developed short fuse.. The situation is stressful and you cannot do certain things as easily as before.

I think that the mental preparation also is important. In contrast to Teresa (BTW rock climbing ... far out!) I tried to find out beforehand what excatly to expect from radiation oncologists/OCF etc. This meant that I was fully expecting this to be miserable from the start. Also I learnt a lot about the treatment methods IMRT/chemo. This especially helped a lot, because not only do you know that there are side effects but also know why (probably helps that I am a scientist). This makes the experience much less passive. At one point you actually EXPECT to have ill effects as you realize that this is just part of the treatment (unfortunatley). It also helps to keep and develop a routine for the day if possible. I agree with Teresa re hydration, that is important.

However the treatment is, it is temporary, and it is a means to an end.
This is from an oncologist re oral cancer: If you had to pick a cancer where cure rates can be high but the treatments can be quite tough--this is the one.


Markus

Thanks, all, for the feedback. You did, indeed, keep me out of caregiver trouble. :-)

Last week was a really rough week, thrush hit on Saturday and didn't clear up until Thursday. And, his pain throughout the week was growing exponentially. It's hard to sit by and watch someone be in so much discomfort.

Based on the advice here, I just maintained the base level of "pushing"...hydration, calories, pills when needed.

When we weren't at the hospital, my husband was in bed. No fresh air...no walks.

I have been consulting with his team all week on his pain meds. I think we finally have the medication where it is managing the pain right...for now...and, his spirits are up and now he's doing better on all fronts.

He feels very self conscious about going outside. He does not want to run into anyone he knows. I think part of that is from the Erbitux rash...which is settling down...and, the other part is the extreme discomfort of talking (he's just going into week 6 of treatment).

He usually falls asleep early and then wakes up around 11:00 p.m. He said tonight he might entertain the idea of a very late night walk. So, I think that's a good sign.

It's hard to see someone so down and out. But, I did listen to your advice...and, it all worked out well.

Thanks again!

Margaret, the post above reminds me of the day John went to the grocery store with a full blown Erb. rash all over. He came home and sais, "Well, I guess not many people have ever seen a rash like this". He did get stared at alot. After that, I did all of the grocery shopping. Amy