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 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.
Yep, met the new aupair. Wonderful Midwestern drawl with a head on her shoulders. Let’s see how she will do this weekend with just Jane and I. I think will hit the zoo if the weather is good. Artis in Amsterdam is a old fashion zoo with plenty of animals, and not many habitats.
I’m confident this young women can do the job of aupair for the summer without threatening my other nanny. In fact the other nanny pushed a few hours on her so that the nanny could study for her final exam next Monday. Brilliant! Everyone is getting their 30 hours a week, and I am finally getting full coverage on the weekends instead of being exhausted trying to hold my own.
The decision to go to Zwolle and take summer aupair with us has some challenges. We will need to open up the house and set those two in motion at the park near by and I will get to cracking on how to pack up a house so that it can be sold. First personal things need to be removed, pictures, paintings, and lifelong momentos of an 83 year old woman.
Other news is that we have a 10 percent chance of moving ourselves. We will know in November if we need to move by next spring. So no wonder I can’t sleep. We might as well combine the two homes together and look for something with a first floor living arrangement, or a lift. This might be needed later as my body gives out on me. The house we have now has sentimental value but is not practical if I can’t get up and down the steps. Therefore I am actually looking forward to a move. I welcome packing up once and not unpacking until everything is settled. That is the tricky part.
Pressures were getting too great and mountains were being made out of molehills. I am no fan of mice and one was happily living in our dishwasher until a few days ago my neighbor acquired a very happy cat. We have not seen the rodent or seen remnants of the rodent. I have decided that it was a good time to get away knowing the cat was doing a good job and our poison pellets were useless.
Some days feel like Alice in Wonderland, but just Me in Cancerland. I spent a week for the first time with my baby girl and the summer nanny, LoveofMyLife had a busy schedule and would only see 3yrold for an hour or two the whole week. Meetings in and out and disappointments of not reading a book for bed would be too much for the little one. I dropped everything to make it easy for us to go to the beach house even bailing on a physical therapy appointment scheduled late in the day. So as soon as Summer Nanny arrived, we went rolling suitcase and backpack onto the trains and buses only to have the longest taxi ride when the bus company decided to strike. We could have gotten to a town closer but the reality was we were still stuck because the tourist buses don’t start running until school lets out in a few weeks. oops!
Finally making it to our destination, there was still many things to accomplish before sundown. Making beds, grocery shopping, and getting the bath and kitchen wiped down. I can’t take risks of high bacteria areas. No cancer patient can. Even after good news was given that the 5FU was definitely working my tumor markers were 185 out of the danger zone of 200 plus.
My new acquisition of an electric bike, I had pedalled until the battery wore out. I gratefully knew I was only 2 kilometers from our beach house on a flat surface. We had just stopped for pizza and even though my bike’s batteries were dead, my own mental and physical batteries had been recharged. The days went by quickly, but I realized I am not good with out my hubby after about 3 days is my max away from him. So this experiment of being away for 5 days was a little hard to swallow.
When the weekend did finally roll around, I was practically jumping out of my skin when the car pulled into the driveway. I ran out of the house without a coat and shoes to greet him in the middle of the night.
The next morning was a big deal day. There was a birthday party for a woman who LoveofMyLife knew from when she was a civil servant and now she is the head of the labor party. We gave her an outside garden gift of a large cylinder vase with sand from our beach and candles in it for on her patio table. She commented that she still has our house warming gift in a predominant place in her garden. Wow what a sharp women to remember who gave you what, I barely remember if I don’t write it down immediately to be able to write thank you cards. This gal has a sharp mind from 4 years ago when she was just a parliamentarian. Now we are rubbing noses with the minister of Education, Justice, Interior, and other distinguished journalist and policy makers. I some how felt like I was taking a break from my Cancerland life and plopped into another world entirely.
The motto for many cancer patients including myself is to live strong. I thought it was going to be an average day, but the last few have been filled with Joy. We met a nice boy and his father in the playground.
We also had surprised our student/aupair with a Sunday trip into the center city where the shops are still open. We bought her a new bathing suit and headed out to the local indoor pool. I was not the only person with this cool idea of swimming. But at the end the day was simply joyful for everyone. We grabbed a burger for 3yrold, and we all shared potato war, which as peanut sauce used in sate and unions and mayo. IT SOUNDS GROSS. but the combo is quite delicious. My little one was so tired that she fell asleep on the walk home in my student/aupairs arms. It was truly a magical memory.
Loveofmylife was living strong in his own way. Early wake up to organize the Mother visit before going to a event which rivals anything a politician in America must do. He had an Indian Head dress on, he claims there will be pictures to follow. Gave a speech not as inspiring as Randy Pausch on youtube.com but still inspiring. And last but not least plant a tree in dedication of 50 years of a portion of his district. Which America would have call urban sprawl got to have a party dedicated to the well being of citizens.
May is flying by and I am trying to shake out a new schedule. So Physical therapy had to change from Monday to Wednesday and Thursday night concerts that use to be a treat are now cramping my weekend plans. I want to get away but I know I will need Friday to recover. Traveling Friday night to the beach house is not easy for anyone especially not for 3yr old.
Just a few loose ends to tie up then we are both footloose and fancy free.
The tickets are bought with a sticker shock that is exceedingly high. But we got the dates we wanted and it is too early to get the seats assigned. Can you imagine? I ask for bulk head 8 months in advance and it is not possible.
I am planning to send a Christmas e mail card to all on my address list, but that is also not possible. “patience is good business” says the Dutch.
I had chemo last Wednesday and now on Monday again. Why? Doc switched me because of schedule conflicts. I said okay before realizing that my recovery time is only 5 days instead of the usual 7. I’m a bit nervous that I am taxing my body too much, but I honestly feel pretty good and after all the wedding grind I feel I can accept more challenges now. I feel good, even if my Doc says my blood is still “out of order”.
I am so grateful for friends that are helping me out this week. Because of the new time schedule on Monday I can’t be two places at one time. I Don’t Dare travel alone tomorrow as originally planned. I have a hero of a friend who is going to wait an afternoon in my beach house and wait for a delivery. I am truly a blessed human being. This positive news makes it that much easier to face chemotherapy today.
The joy of my brother’s wedding lingers on…
That was the comment I got from my limo driver in America. Everyone asks me about my neck brace hoping to hear a happy ending. I said I have got cancer and it is inoperable in my neck bones therefore I wear a exoskeleton brace. He jumps right in and says he was a chain smoker who quit and 2 year later they found Cancer in his voice box and has been a survivor for 5 years.
I wonder if I am jealous. Not only of him but of others who have beat this dreaded disease. Am I so self centered that I wish for it to just go away some days? Or have the glory to say, yes I beat it!
Instead I get to watch every 3 months on a scan that cancer is slowly but surely eating away at me. One nibble at a time. I am grateful that the cancer is progressing slowly and I have much capability considering I have stage 4 cancer and there is no stage 5, unless you call death stage 5.
Or am I jealous because I would love to be the person that goes on those survivor walks, and raise money for the cause and to think about it as a bad dream in the distant past and to help others to get through this breast cancer. I want to say I am free of it! My reality slaps me in the face and i say that day will never come. “Don’t look back you can never look back” Don Henley- summer of 69
cancervisa