My husband has gone through the surgery, modified radical on 9/29/06. Next week we meet with radiology. So now I am looking at the new phase we are going into. I have read posts about the immune system being lowered. What can I expect about Tom being able to go places during and after treatment? We are in a very populated area and love to be social. Besides the handwashing and common sense, should we expect a period of time that we just don't go out, even if Tom feels up to it?

How have you guys handled protecting a loved one with a lowered immune system?

Barbara,

You'll probably get a range of views on this. I went with the "common sense" approach -- plenty of handwashing, trying to avoid sick people, etc., but was definitely not willing to become a hermit. For me, the really bad effects of radiation didn't kick in until around weeks 3-4, so I remember playing a few rounds of golf with friends in the first couple of weeks, before I felt too run down and in pain. I was also able to keep working, at least part time, all the way through radiation (it was something I was determined to do, partly as a way of trying to take my mind off of treatment). However, for much of that time I was able to stay in my office, frequently with the door closed, so I had minimal exposure to workplace germs during the day.

At some point by the middle or latter stages of radiation, your husband will probably find that he doesn't want to be social -- it requires a level of energy that many (most?) people don't have after 15 or so treatments. I was 39 and otherwise in great health when I went through it, and I was initially skeptical of all the warnings I received about the debilitating effects of radiation -- but I learned. Since many social events involve food, it can become increasingly unpleasant for a radiation patient who is having problems chewing and swallowing (not to mention temporarily destroyed taste buds) to try to deal with those situations.

Cathy

Thanks Cathy G,

Tom is already feeling low with the two previous surgerys since 8/29/06. But he still loves to visit with friends. Swallowing is real difficult and eating is already becoming an issue, then to put radiation on top of that in the next few weeks he really won't want to visit to much, at least where food is involved. I won't have to worry to much about holiday entertaining this year, but watch out next year!!

I like the common sense approach too, and we will take it as it comes.

Hi, Barbara, I can't add much to what Cathy said-my husband did not want to visit with anyone from the 4th week of radiation on. It took about 6 weeks after radiation was over for him to start feeling well enough to "visit". He also got the PEG out and began eating by mouth again. I was pretty relentless about people [family] coming in the house if they had a cold- and everyone washed their hands on the way in. That being said, when John started feeling better, he went out and I had no control over that. Good luck. Amy

Hi Barbara,

I think the common sense approach is a good one. If someone has a cold tell them to stay away, get some clorax wipes to clean door handles, phones, common surfaces etc. It's important to have support through this experience so don't cut off your friends they can be a big help to you. Some days neither of you will want to talk to anyone, answer your phone or see people - but that shouldn't be every day. Stay connected.

Good luck with the treatments.
Regards JoAnne

Thank you Amy and JoAnne,

We are much to social to cut anyone off, we have great friends, but I understand the not wanting to talk to anyone either. We have already had those days, this surgery has already gotten Tom down and nearly a 10lbs weight loss. Even if he does not have chemo with the radiation I feel we are already behind the eight ball a bit. I appreciate the friendship from this site.

Take Care,

Barbara,

My husband finished radiation and chemo treatment 7-13-06. I needed to take precautions, but I understood that was primarily because of the chemo. He didn't want to go out, so friends came over. I set out ground rules ahead of time so everyone knew. No coming over sick, no children under 12, wash your hands when you walk in the door, and visits kept to less than 2 hours (my husband wouldn't tell people to go home, but if they stayed longer, he was simply exhausted). Of course, there will be times when friends call and want to come over but your hubby is having a bad day. It's ok to say no. No, but I think he will feel better next week works even better.

Barbara
Like all the others said, there becomes a time that he wont want to be social, plus when the radiation really kicks in food has no taste (if he is able to eat) and if he has had surgery, sometimes they can get really self concience of eating around people (even the ones your the closest to) I was pretty freaked out about the germ stuff because we have two children (dirty little buggers) ages 9 and 12 and they were in school at the time, I was sure every cold and flu bug would grab a hold of our household, so I stocked up on the old "airborne" and popped it in the kids and myself regularly. The doc also had Erik start taking some vitamins to help boost the immune system. BUT YOU HAVE TO MAKE SURE FROM THE DOCTOR, BEFORE STARTING ANY VITAMINS OR SUPPLIMENTS BECAUSE SOME CAN INTERFERE WITH TREATMENTS. So only do that on the doctors recommendation.
I will certainly be thinking about you all and hoping for a clean and germ free next few months!
Jennie

Barbara
I just wanted to add my good wishes for both of you. As everyone has told you, socializing is not going to be a priority for a while.
In fact it will be more of an essential for you to get out and have a break from your caregiving duties.
Take care of yourself.
Marica

Thank you all for your comments. It always lifts my spirits to have contact with people who have been through this.

jennie,
No supplements until doc okays it. Thank you.

I will take care of myself, I have learned from this site about caregiving for a loved one and myself.