Wednesday, October 28, 2009

Wow, I thought I would write sooner, but maintenance just got bigger. I thought I would have all this time for resting, reading, maybe drawing. NOT.

So much of the day is consumed with care. To give you an idea this is what today looked like and most days. I am up at 5:00 a.m. doing a salt solution cleaning the area around the neck and trach tube. Then I rinse my mouth with baking soda and water as it is now filled up with gobs of phlegm from the sleep. This is all to be expected from radiation and chemo. If you spoke to me in the last couple of days, you probably did most of the talking as now I am struggling to speak. (I know some people really like this idea – don’t worry it will come back and watch out). Then with a peroxide solution and brush I clean the trach tube out. I give myself a sponge bath and dress. I am ready to leave at 6:45 a.m. to Toronto for the 8:00 a.m. radiation apt., I then meet with one of the team doctors and we reviewed where things are at. I loss a little weight again so we look at ways to manage that nausea again. Yesterday without getting into the fine details I will let you know I was pretty close to the bowl most of the day. I had a nurse clean up the bandages; give me a saline solution around the neck to help with skin. The doctor reminded me this is the very tough time. I spoke to Vera (my sister) and we said that seems to be the message week by week. Good point. I then came home (it is around 11:30 ish) and immediately hooked up to the feeding tube – I now need to have 4 tins. Each tin takes 1 ½ to 2 hours. Usually I come home to a long nap as well. Before long it is 2:30 and Julian is home by 2:45 p.m. and I am starting my next gourmet dinner or should I say gourmet drink. (the further from the truth). I watch a little Oprah and finish off the drink. If I rush anything I pay for it later. (which I did). I see now we are all getting a little tired, keeping up but a little tired. I had some great care this week. Yesterday my girlfriend washed and conditioned my hair (this is the friend who works with clients with hair loss) , so really was gentle both with the products and touch. Richard got our local chiropractor to come and see me tomorrow night as my spine has been tender. YES. On Sunday, I had 3 healer friends do a series of treatments on me. So many angels out there. Earlier in the week I felt I hit my low and so together Richard and I did a prayer. Within minutes help came in so many ways. Nice reminder to move to a bigger source.