My husband, Dana also used a dry erase board for quite a while. We also used our own sign lanugage, but the first thing he wrote on the dry erase board was, "you really suck at charades"! I agree with everyone who advised you to write down questions for docs and take notes when they answer. It's good to be able to rely on your notes when things get emotional. I also started a word document on the computer with Dana's ever changing medicines. Every new doc got a current printed list. We kept a packed tote with magazines, a blanket, and med list for chemo or unexpected hospital visits.

Dianeox,

You sound like an awesome caregiver!! I keep EVERYTHING in a 3 ring binder in dividers and that helps. So when I need copies of scans or anything else, it's there.

Hello Wendy, not sure that I can help about communicating, my wife said I couldn't communicate before all of this. We did use a pen and pad of paper when out but around the hospital or home used a white board. I think we had some fun trying to communicate at times, especially when she would get that look in her eyes like you are the biggest dumbsh.. in the world. I think my best advise is to cherish everything that is happening whether it is going to an appointment or just sitting together watching the day go by. I know I struggled when my wife was first diagnosed as to take an unpaid leave at work or try to work and be a caregiver. Thanks to some help from family and friends, I was able to take some time upaid that I now wouldn't trade for all the money in the world.

Try to enjoy every day, will add Steve into our prayers and hope for the best for both of you.

Thanks, Suzanne! One other thing I forgot to mention - If you need to go to the emergency room for anything(in our case, Dana's PEG tube fell out), be sure to list your medical oncologist as your primary care doctor. Dana was in the ER for 36 hours when his immune system was at its worst. After the fact, we were told by our insurance company that if we had listed the medical oncologist as the primary care doc, he would have been immediately moved to the oncology ward and had better care. BTW, the insurance company refused to pay the ER bill, and got our co-pay reimbursed because of the awful care he received!

I second what Diane said. The same thing goes for rehydration. If you have it done in the infusion unit it's 4X faster (and that's AFTER the wait to get triaged and seen) and far more comfortable. I had to be rehydrated 3X during Tx and the first timne was in the ER. You're out of luck if you need rehydration on the weekend or late at night. Ask the oncology unit what their operating hours are.

I had to rehydrate as a patient > I was in bad shape and close to critical, It took 4 days to get half way beack to normal. LOL And I thought I was doing good too. This was one of the many days I had to drive myself to the hospital for treatments. It's bad when your caregiver has gone bye bye. And no, I'm not bad mouthing. it was just something that happened at bad time.

Thanks everyone for your advise. It really helps although some of it is like a different language that I suppose in time I will learn. When you talk about rehydration do you mean if he doesn't drink enough water etc during treatment? I feel full of silly questions but I know if I don't ask I'll never understand. I'm making a list of all of the things to be prepared for and to ask the doctor's. Things I never would have known of if it wasn't for all of you x

Yes it is coming back to normal after being hydrated. I drank plenty of fluids I thought, but must not have. Good luck in all that you do for your man, Sounds like you fit the care giver role very well.

That is supposed to be dehydrated sorry for the mistake.

Thanks Jim, I hope you are right. It's certainly reassuring to know you are all here and know what we are going through. Makes a huge difference in my day. Big day ahead tomorrow. All of Steve's teeth coming out. Dreading seeing pain on his face but will get through it, for him. Better get some sleep as have to get up in 6 hours.