Moving along

Recapping this week: It all started on Monday, when in the course of the day it gradually became harder to stand. I was frustrated about my progress and reported this to Dr. Lips who in response told me to cancel my trip to Brazil in exchange for a shorter trip. Then there was the mistake at the hospital regarding the embollisation. I was rescheduled for Wednesday morning. By monday night I was walking so bad that we felt it wasn't safe for me to go to the toilet alone. We ordered a toilet chair for the next day and a bed pan just in case. That was a clear sign of deterioration, but I figured that I was going to the hospital anyway. I called the hospital to ask if I could be admitted on Tuesday night rather than wednesday morning regarding my transportation, then in the course of Tuesday I got more and more worried, as I could feel less and less in my legs. Marcus was going to drive me in a wheelchair taxi, but by the evening I was wondering how I could sit in the first place. I called the hospital and told them I needed to see a neurologist. In the end I called an ambulance. I left home warning the family that the embollisation was going to be cancelled and that I expected emergency surgery. By the time I arrived in the hospital it seemed like I was paralysed from the breast (TH6) downward .

Coming into the hospital was a mess as I was told to report to the first aid. The co-assistant was badly informed and kept me in that department for 4 hours. It had been a busy night in the ER due to stabbings in Amsterdam on the Rembrandtplein.


4 hours on a stretcher is killing for me, and the fact that they nw so little about me really frustrated Marcus. At one point I told him to go home, it was so late and he had to work at 6 and to look after Sidney too.


Eventually they brought me to my bed which had already been reserved. The co-assistant made plans to make scans in the morning. At 7:30 The radiologist came in especially early to scan me. By this time my embollisation was scheduled. That schedule was overthrown by the Neuro- and Orthopedic surgeons (Dr. DP Noske and Prof. Dr. BJ van Royen). I was presented the opportunitity to undergo an emergency decompression of the spinal cord. In my case this meant that they wanted to reverse a procedure which was paralysing me.

This was exactly what I had expected. In fact,I had been the one who decided to not eat in the morning just in case. By 10.00 I knew the operation was on. Things went so fast that I ended up asking the pre-op to inform Dr. Lips. I was already in the surgery room when he called and told them to wait for him. He wanted to make sure I was OK with the decission.

The operation took a good 4 hours and I lost 3 liters of blood. I was still in the wake-up room when Melvin and Kiara came to see me. I had an outer body experience from the narcosis and seeing that angel-face just brought right back down-to-Earth. Kiara had made a special effort to look beautiful. She was wearing all the jewelry I had given her.

Before the surgery I had made the hospital promise me a bed in 2b rather than 2c where I never want to go back again (I even bribed them by threatening not to go through with the surgery). They still made me stay there one night though, and in the morning I was moved back to Neuro.

I felt the fatigue of the last week come over me. I also look like I have been assaulted!






I had 3 drips, one drain and a cathether, and NO intravenous anesthetic! And guess what? There is hardly any pain! Tests throughout the day showed that the operation was succesful. The strength and feeling in my legs was starting to come back.












I am in an observation room with 8 other patients. This is my view:

I have purposely only had family visit as my energy levels are really low.

I was also very anaemic so last night they gave me 2 sacks of blood. Feeling much better today. Am now trying to mobilize.

If you want to visit, I will have visitors in the morning from 11.00 to 01.00.

But please call before to check if it's OK because I still need a lot of rest.