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.
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.
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.
Yesterday I was barraged with many questions from upcoming docs, in there 2nd year of study. Are Docs different in America? What do you do different now, since you have cancer? How has your life changed? Are you angry, scared, or wanting to go back to work? These questions seem simple compared to explaining to my 3 year old that I don’t have eye brows because of my medicine. When the hair falls out or gets thin, which is in my case, the medicine is working.
At this meeting of the minds yesterday, I talked for 3 hours straight, was given a ergonomic comfy chair and loved every minute of getting my brain picked. I keep a journal and have for years, but now my focus is on getting my 3 year old the advice she is going to need to survive her crazy world, with or with out me. I drew many references from these journals to best answer the questions.
I have a lot of offline work to do today while the questions are still fresh. The problem is that I talked so much I have a sore throat and a temperature. Serves me right for shaking every ones hands, by my rules I don’t do that much anymore, and now I remember why. There were 16 students who were asking the question and the first few were very emotional. Then I got into the rhythm of it all, and then things got better. Once I realized these young docs will soon be practicing medicine and I am their first “face” of cancer. Survivor specialist is how my shrink introduced me, I had to chuckle.
In typical dutch fashion I got a huge buquet of flowers, to thank me for my time and effort. See below
Everyone knows the Disney story of Bambi who lost his mother to hunters. The version I have has a few beautiful words of how the mother nurtured and let Bambi know all the different names of the flora and fauna. The ugly hunters as depicted in the book, shoot Bambi’s mother to death. I tried to explain that my sickness is like the hunters sooner or later I will also be dead. The story goes on to explain that the father continues to nurture an explain the sounds of the forest and the smell of plants and that no one is safe from the hunter. In this version Bambi is also feels pain when hit with a bullet but recovers. I explain that some people have my sickness and make it through just like Bambi. The rest of the story explains that everyone is happy to see Bambi again, and that he gets on with taking care of the woodland creatures Globo and his love Falina.
isbn 84030508880-9
It’s true, the dutch set aside the 29Th of May as a day of salons, hair dressers, massage therapist and many other free gift givers from shampoo to face creams, lipstick to full make overs. This foundation Viva la Donna organizes and information day where the institutes get info over how to work/handle women with cancer.
During these info days women get skin care tips and relaxation methods that specifically deal with their focus group. Making use of such experts as national skin therapist, national foot reflexologists, onocologist care providers and others.
The website has a place where you can also ask questions about the institutes involved and upcoming events.
Wow! I MISSED this years events but I am sure to be involved next year, God willing.
Will I also be marked on the calendar or remembered for over 20 years. The weekend or around the date that I die? I still to this day remember where I was when my loving brother died. Just like people remember the Kenedy assasination. I was still just 18 and very impressionable.
On a small extra tomb stone reads “Always in our hearts and minds”. I will never forget, I won’t allow myself.
I will remember you, will you remember me….
I still shed a tear.
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