Hi Lisa,

Creating a comfy environment for my husband surrounded by the "things" he wanted nearby was one of the first things we did just before Rad Tx. He wanted to be in the family room with the big screen tv, lots of pillows so he could sleep sitting up and avoid choking. I bought a super soft blanket and set up a tray where all of his stuff was within each; ie water bottle, tv remote, tissues, meds, Aquaphor, and a bell so that he could call for me when I was in another part of the house. It became his cozy nest that he could retire to.

Another thing that helped when balancing 'what meds to take when' is to create a daily med schedule. From 5:30 am til 1:30 am I had listed ALL meds, wound care, feedings and TX. I would check off each thing as we accomplished it. It felt great to have some control at a time when so many things are out of your control. I would be happy to email you the schedule if you want to see it. Another benefit was that I would take these sheets to the ENT appts. and could answer any question about his daily care or get some advice when things needed tweaking.

All the best -
Anita

Lisa, I did purchase a recliner with electric controls (at times he was too weak to use manual levers) and a built in heat pad, as my husband could not sleep lying down due to mucus.

Regarding getting things ready, many issues have to be dealt with as they occur. Initially, I would obsessively try to prepare ahead of time for all types of side effects, etc. I quickly learned that I needed energy for the immediate concerns or I would become too scattered and drained to be useful. I got a prescription for an anti-anxiety med and used it at night so I could fall asleep. As others have said, I especially needed this early on. Once tx is under way, you are busy and occupied and some of the free floating anxiety dissipates.

I did ask several friends to prepare soups and freeze them in small containers. One was a vegetarian "miracle broth" that we froze in ice cube trays then transferred to freezer bags. It was very convenient to have on hand as he starting taking fluids by mouth after tx. and a shot glass size was about all he could manage at first.

What helped me the most was being in daily contact with the nursing team at RO & MO. I discussed everything with them and they had wonderful suggestions and were a great support. If necessary, they would contact the MDs directly for me, so I didn't have to go through the general switchboard fiasco.

Everyone is correct in saying have him eat as much as possible now. We had a dietary consult prior to tx that was helpful. While my husband could still eat and drink, I added fortified milk (1 QT whole milk + 1 cup non-fat instant dry milk = 211 calories/14 grams protein/per cup) to everything possible. I even used it to make Carnation instant breakfast milkshakes.

A small issue is a bag ready to go for the car - plastic bags (useful for many things), book for you, phone #s such a pharmacy, etc. Often we would have to stay after radiation for infusions, MD check, chemo, etc., etc. So I needed to have his formula for PEG and pain meds with me. Actually, I often was able to relax and get some rest as he received infusions because I knew he was well taking care of at our tx center (it was the one place I didn't have to check up on what people were doing. Everyone was competent and caring). Lottie

I am feeling very scared. I don't want to see him hurting. Still don't get how he can feel absolutely fine and have this terrible stuff running through him. I wish it was me.

We're done with day two of chemo. The taxol and carboplatin have not had any negative effects. The IFEX only nominal nausea. He has one last chemo dose tomorrow and we should be on our way home by 2:00 tomorrow. I'm so happy he hasn't had any immediate negative side effects. Gearing myself for the next couple of weeks. Thank you again to everyone for the advice and support. I will keep you posted.