Home

What most of you want to know now, is how am I really doing at home. Yes, I have a new handicap, not being able to stand without aids, but somehow my personality seems to have grown with a mega boost. I am not especially feeling my loss at the moment as I am focussing on how to function around the obstacles that I come across. I have decided to not keep asking myself the big 'WHY ME?' question, because the answer is simple: There is no answer. Therefore, asking yourself that question can only lead to frustration, which I can do without.

I tried to use my hospital period to accept my new physical state so that once I came home, I could go straight into my rehabilitation mode.

Last week, was hectic, with my job for my client coming to an end and with being welcomed home. It was a time for family and friends which was really important for me, but it also got in the way of my energy management and worse still, it got in the way of my mobilisation. By friday, my muscle tone had deminished so much that my calf muscles looked like lambchops. I made a point to start exercising again, especially since reducing the Dexamethason is not possible yet.

I worry mostly about the tumor on TH6 because that is the one playing up.

What can I say with regards to the treatment? Well the embolization appears to be succesful, seeing as the object was to reduce pain. The pain has been reduced, and the problems caused by te tumor on S1 have not increased. So far so good.

The radiationtherapy on TH6 has also had some effect, but it is hard to say how much is the radiation therapy and how much is the Dexamethason. I have a two doctor's meetings today to decide how to move forward. More on that subject later.

In the mean time I have been busy working on solutions for the future. One major thing that needs to be taken care of is housing. As you all know, I am going to buy an appartment at the Entrada site (mine is the E2). Today we had a meeting with the Realtor. He, was fantastic, as he helped lift me and my wheelchair into the pluche portakabin and did everything to accomodate me. The flat which has been assigned to me is a huge flat on the first floor of the Solanum building which is located on a huge terrain right in front of the central station in Hilversum. For all you buddies abroad, there is a train that comes into Hilversum CS directly from Schiphol airport!

The location is only a couple of hundred yards from the town center and is adjacent to the neighborhood where I live now. I will have 3 bedrooms and 2 balconny's, one of which will hover over a large pond. The realtor is trying to make adjustments to the parking area so that I can be closest to the elevator.

I will have a parkingspace inside and a shed where I will be able to keep my Speedy Elektra which is already ready for transport.

All adjustments will be made with money from the social security.

Kiara will be living in an environment which she knows and will have acces to the whole area. She will also be able to be near her friends which she has know all her life. The appartment was way cooler than I reallized in the beginning. There are many suprises like climate control etc. etc.

It was great fun to go to the realtors with Aldith, and I managed to sit up for an hour and a half. Not bad! In the meantime life resumes as reasonably normal. These first two weeks, I have help from my mother and my brother Melvin.

Two weeks in the hospital is a long time if you have a teenager in the house. Kiara has grown so rapidly and is doing fantastically.

She has started to skate with Martin and his good friend Marco. After a weekend with him she and her bestfriend Martine went out to skate in the skatingpark nearby! They looked so cool! As ever, Kiara is doing really well in school. With the musical finished, she is struck with a little boredom. She played a small role in a dutch series called Verborgen Verhalen -episode Het Geheim van Barry (click here to watch the episode) during the Mandela touring period, but is taking up photography for the next couple of months.

As for my serious request, thank you everyone who wants to help out. I still need more help so please keep coming.