This board generally does a great job providing basic info regarding medical issues, nutrition and the like. Here are some not-so-basic things that I've learned, done or thought as we've dealt with my husband's recurrence.

Information management is the second most important thing I do right now. When my husband's recurrence was diagnosed, it took about three phone calls for me to realize that passing along bad news was the equivalent of hitting my hand with a hammer. Each time I did it, it hurt a little more. I set up a caringbridge page for my husband and the thing has been invaluable. (I used an e-mail list during his initial treatment. The web site has worked out better.) People now know where to go to get info on how he's doing or what's happening with treatment. One of the advantages of this is that when we see others, we don't have to spend time bringing people up to speed. We can just sit and talk about normal things. Normalcy is good and incredibly underrated.

The most important thing I do right now is function as morale officer. And not just for my husband. I'm keenly aware that how I act sets a tone for others. Not only for how they interact with me but also for how they interact with John. I'm not sure I agree with the notion that attitude is everything and a positive attitude will help you beat cancer. But I do think that a positive attitude helps you get through each and every day. Sometimes that is enough.

I work hard to maintain my sense of humor and help John keep his. It can be difficult some days but it's worth the effort. We are well past 1000 days since he was initially diagnosed. I mentioned to him recently that I thought there were probably no more than five days since this ordeal began where one of us had not been able to make the other smile or laugh about something. He thought it was more like three. Whatever, I know we have had a lot of crappy days in the last thousand.

Along those lines, I've come up with a few things to lighten the mood. It took exactly one day (the first day at the hospital for all of his initial cancer consults) for me to realize that if the cancer didn't kill him, the waiting room time would. So it was off to the internet for me when I got home. From a teaching English-as-a-second-language web site, I found a list of conversational starters. I've been carrying this list in my purse for almost three years now. I bring it out whenever we're sitting in a waiting room and I sense that John seems anxious. I know this sounds dumb but it does wonders to break the tension. I take the list out, pick out a favorite, put it back in my purse and give it a go. "Have you tried Sally's egg rolls?", "What's your puppy's name?", "Looks like the bus is running late today.", etc. We're now at the point that if he sees me even reaching for my purse, he laughs and says "I'll talk, I'll talk!"

Another thing I do is leave him little sticky notes in the morning -- as I'm usually up headed off to work before he wakes up. Sometimes I write something sweet, sometimes I try for funny. Once in a while, I'll throw in something weird just to keep him on his toes. And I leave them in not so obvious places. Page 5 of the newspaper, in his tea cup, in the fridge. I thought these were just goofy things that I was doing (well, I know they are) until I realized that he was collecting and keeping them.

My next 'brilliant' idea was to hit a craft store. I went in there and bought a bunch of alphabet-block beads. Everybody has a LiveStrong bracelet. I have a bracelet that spells out "JOHN ROCKS". He laughed and rolled his eyes when I showed it to him but he has stopped every person he knows at the hospital to show off my wrist. What started as something of a joke has become a permanent accessory. Friends have placed orders.

My genius idea, however, has been Chemo Eve. My husband has been on a number of different chemo regimens and they're all a bit scary at the outset. So I came up with Chemo Eve as a way for other people to kind of send John off to his treatment on a high note. When he starts a new treatment, I put something up on his caringbridge site to the effect of "we'll be here from 2-5PM on Saturday, stop in if you have a chance." We've had more people showing up for these things than I ever thought we would. And there have been some pleasant surprises -- some non-locals have seen the announcement and shown up unannounced. John rarely leaves the events without tears in his eyes -- he is just so touched that anyone shows up. Which maybe is a little misleading because they're actually fun and upbeat get togethers. In fact, we now have people saying that they can't wait for the next Chemo Eve. I tell them I know what they mean but, you know, another one really isn't something we wish for

Thank you!
Am at a low point right now---but as the 'sufferer' and not the 'caregiver' , I do some of the same stuff!
Ray works 2 nights a week, so I stick post-its near his 'breakfast stuff' or TV chair just telling him how much I love him.
I do 1 sort of 'generic' email after treatment and put in multiple addresses and I also make jokes--keep telling him he has to make me coffee cos I got cancer--he tells me to get stuffed, he's put the kettle on and that's a concession!
Go girl---I like it!

Brenda

Dear DEJ,- bottom line- you have summed up what caregiving is all about - It's about loving:)One thing John and I did was to draw funny pictures for each other and leave little messages on each page of his daily chart [which was also his journal of daily events] Only problem is that he drew alot of "nurse from Hell"[me] cartoons -nurse with peg food, nurse with meds, nurse with liquids, nurse with blood pressure machine and thermometer, nurse with scales, etc.rolleyes: But that journal cronicles almost 2 years of our battling this disease together. Thank you for your caring post. Amy in the Ozarks :

What a great post!
I love the bracelet idea--added the craft shop to my to do list today! I really like that.
Some days are just so hard...any bit of happiness is such an incredible gift...thanks for this one.
Donna

DEJ,
Wow...wish I had some of your creativity. Sounds like a little stress breaker in an otherwise stressful situation.
You keep the good ideas flowing!
"DEJ ROCKS"
Cheers,

Mike