A lot has happened in the past few weeks, to keep you posted... Through difficult things you find the good things. Always looking for the bright side or points of light. Never a dull moment, lots to organize and it keeps going on.
With my last scans it came out that the chemo had not worked and the spreads in my liver had grown. Suddenly my liver is the biggest threat to my life. I decided to quit chemo totally as it only brought me lots of bad times and breaks down all sorts of vital organs in my body. Still now I decided yesterday I will participate in a Depdox study of direct chemo in my liver as otherwise it could go pretty fast now, which means I've got nothing much to lose. Without a vital organ like your liver you cannot live.
Next month I need to stay in the hospital 2x for 1 to 3 nights. Besides that I do everything alternative that I believe in and sorted out already.
I had so much pain in my back from 2 subsided vertebra's that I could not control it with regular medication. Now I have a corset(?) around my waist to support my back when needed and a rollator(?) to help me walking but mainly to have a seat with me at all times and to carry things. The biggest change is that I have a Morphine pump now that I am connected to 24 hours a day. Trying to get used to that. It gives out small dosages of morphine all day long and more when I press an extra doses button.
At the moment it is full on summer in the Netherlands, I am enjoying when I can and that is more than not. Pain under control and temperatures up to 30 degrees. Time for the beach and more writing. That is what I love most! Had a good time at the World Cup but happy it is over now as well again. Take care all and enjoy life!!
From working with a portable organizing a festival to a bigger morphine pump connected to you 24 hours a day.
Sometimes there are storms, and sometimes there is sunshine. Whether you are rejoicing or fighting back tears, that moment is for you to go through. Allow that to happen, give thanks in the good times, ask for help in the bad times. – Life
July 5 2014
I've been to see my best and long time friend, Claudia in Sitges, close to Barcelona. I've been there many times and it feels like home. She has a beautiful huge house in Aiguadolç which is the little old harbour next to Sitges town. A perfect place overlooking the sea and with a communal garden with swimming pool. She loves to cook and I love to eat her good and healthy food so I am getting really spoiled when I am there. Together with lots of dutch friends that i know longtime as well we watched the football games and we went for walks
For the first time I asked for assistance on the airport, they brought me ina little airport car and a wheelchair to the plane and gave me 2 chairs so I could lay down a bit. All went well and I posted some iPhone photos 'Impressions on Sitges' on Facebook.
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| Our bench |
The day before our meeting I had extra pains which were due to not taking the basic 1000mg of paracetamol each 6 hours which compliments the other painkillers. I told her about it and she said it would only get dangerous as the pain would go to the front as well. Than I could get paralyzed in my legs or become incontinent. But that was the case! The pain went all the way in front as well!! Pfff she said, than we have to do radiation immediately again. It was the day before I was supposed to fly to Barcelona. I already saw my trip canceled and I was a quite shocked about this news. Suddenly the spread in my back is the biggest threat to my quality of life. If I cannot walk any more, I cannot take care of myself anymore and that I fear most.
But luckily I could get radiation immediately on that day and still go to Spain the next day!! And now we can only hope for improvement which is supposed to start in about 2 weeks.
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| In the wheelchair on Barcelona airport |
I really had a good time and I had a cover for the picc-line in my arm so I could swim and that really helps en I always enjoy a lot! (Being spoiled in warm and natural waters!)
Now this week my picc-line will be moved to my other arm, I will have CT scans and echo to check whether the chemo's and radiation are working and than also the regular APD infuse which is a bone enhancer. I will be taken to the hospital both days by care ambulance which I arranged a few weeks ago and makes things much easier as I cannot go by bus now. Still quite some pain in my back and I have to lay down as much as possible. But coping and I still can go out for a bit every day to keep on moving. I also do meditations and exercises from the fysio therapist.
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| Having radiation in back |
So feeling good and apart from these 2 hospital days this week having fun!!
"Sometimes
there are storms, and sometimes there is sunshine. Whether you are rejoicing or
fighting back tears, that moment is for you to go through. Allow that to
happen, give thanks in the good times, ask for help in the bad times." – Life
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