sirens woke me and not realizing I was back in the big city after a wonderful weekend of rest and family reunion. We are shocked by the city noise when we get back from the beach house. I can hear the motorcycle pull up to the door and the newspaper placed in the mail slot.
I am thinking as I woke, that will be my ambulance someday. Disturbing the sleep of our neighbors.
I get reprieve from weekly chemo two weeks infusion 2 weeks pills. During the non hospital weeks I plan to be away for two weeks at a time checking in only on Monday’s for mail and administration. I just found a great list from landsend advertizements on packing for camp.
Anxiety ridden while traveling the tube/metro because of my low white blood count I don’t even want to make contact with the hundreds of hanging loops and poles. After getting this incredibly itchy rash on my face I feel like the phantom of the opera, I don’t want any one to notice so I put on the biggest pair of sunglasses and a wide brim hat. WHAT AM I COMPLAINING ABOUT? I was off to a festival in the highly multicultural part of town where people really don’t come out after dark.
I wanted to dance to some salsa music but realized we were in the wrong tent. The VIP tent had a reserved table that was empty until we showed up and then suddenly a small sweet very hungry 10 year old and her younger brother and sister sat down beside us. Not understanding the dynamics dived right into the free nuts bowl on the table. We all smiled and wished we were kids again with no pretenses and no one to impress just hungry!
Yesterday I went to a big indoor jungle gym called tun fun instead of Tons of Fun. The noise inside was deafening that I went out to get earplug from the local druggist. But today is a down day as a result. I call then P-Jays days, where you wear your pajamas until lunch! My student au-pair is still with us but talking to other potential employers via Facebook. We all needed a bit of fun and a memory to store in the brain for later.
I got word from one friend that she is moving. I got word from another that a summer home to purchase in their future plans. My mother in law has just moved into a specialized hospice. And moving her possessions is proving to be challenging. I am also dreaming of moving, but no word yet if that will ever come to light.
We are only moving to our “trailer by the sea” our beach cottage for the months of July and August. If you don’t here much from me for two weeks at a time, I am officially on vacation from July 19th!
See you in September :>
I had an official inspection today to see that I can walk one hundred meters or not with my cane. I told her of my limitations and later in the day I got a call asking additional question on where I would go if I needed to take my child to all her activities myself, ballet school, little gym, playschool, and then my own activities … physical therapy, and my appointments not including runs to the local pharmacy and the weekly visit to the hospital. I am a full time cancer patient. I think today I was really confronted with my limitations and my freedoms being cut off since my Doc does not want me to be in a public situation. No more bus, tram or bike. Am I worthy of a Canta or invalid car? How else am I going to travel with a 3 year old? Any one know of a cheap chauffeur with his own car? (just pipe dreaming)
I had a ridiculous day of getting socialized medicine shoved down my throat practically. Bureaucrats /inspectors are in full abundance in Socialized medicine. I can’t simply go to my doctor and ask for a invalid car, I have to have a pencil pusher come to my house write illegibly on a paper form and be sent off with my medical records which is thicker than the Tolstoy novel War and Peace.
This bureaucrat is trying to convince me that I should expose myself to the elements and attach a child’s bicycle seat to a scrambler /
I am a cancer patient not a quadriplegic! I am really not ready to battle the bureaucracy in my condition. I wish I could make these confrontational feelings go away. I still have my mental boxing gloves on.
My au-pair just said she does not want to become a freelancer and be responsible for her own taxes. I can’t stop her from quiting and just go back to being a student. Forcing her into this responsibility is not on either of our agendas, but the rules of getting my disability requires a personal health care freelancer. Au-pairs are not prepared to be business owners. Still stunned by the news all I can do is ask her to quit. I was planning to have her be with us for 3 years until her master’s degree is over. But that does not seem possible now. Time to start hunting for a new au-pair in 2 yes two weeks time.
YSC Events and News
Teleconference: Telephone Networking Session for Young Women Living with Metastatic Breast Cancer - Tuesday, July 8th
Join other young women living with metastatic breast cancer on Tuesday, July 8th, 2008, from 8:00 to 9:30 p.m. (ET) / 5:00 to 6:30 p.m. (PT) for the YSC’s free monthly peer support phone group on living with metastatic disease. Here, young women living with metastatic breast cancer find peer support, laughter and discussion on living with a chronic disease, side effects of new treatments, coping with work and family, sexuality and intimacy and much, much more. This free teleconference is open to all and is facilitated by Susan Glaser, MSW, Evelyn Lauder Breast Center, Memorial Sloan Kettering.
If this is your first time participating or there are changes to your current status, please fill out and return this questionnaire. For more information and to register for the call, please email your full name to YWABC@youngsurvival.org. For your convenience the call-in instructions are as follows:National Call-in Number: 800.804.6968
Access code: 4242163
http://www.margriet.tv/gezondheid/viva-la-donna-verwendag
The video describes 10 women and getting a sauna and a body treatment then a exercise routine for some. The women who is getting wiped down said that last time she was bathed she was in the hospital, but here is a better place, i.e. the spa. you can see the whole day and what it entails. sorry but it is in dutch.
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