Helena's visit

My ghostwriter has put me in the position that I now have to write up on Helena's visit! Helena is my schoolfriend from Tunis, way back when we were in 3rd-6th grade. I hadn't seen Helena in about 15 years when I met her in Brussels. Helena hopped on a plane from Stockholm and I had a meeting in the VU hospital. I met her one stop away from the Airport, thank goodness for my invalid parking pass! It was as if we had last seen each other a week ago and we started chit chatting straigh-off! Helena was remarkable, she came with me to Lips's office, which did me good because you get so used to being caught up in your own little World that an outsiders'perspective on things remind you of the severity of everything that is going on. Helena quickly grasped the concept of my illness. She knows me so well that she knew I could use any help that is offered to me. Helena drove me back to Hilversum and took ik upon herself to do the shopping and cooking for me two days in a row. She also made me go rest a few times and I felt no need to disobey. You can really tell that Helena runs a house-hold with 4 beautiful kids, she never once asked me where I kept things and she just set about doing what needed to be done. In the meantime I got her hooked up to Facebook. Helena has made a giant step into the digital World! The best part of her stay was re-hashing old stories. It was beautiful. I managed to go into the hospital totally revitalized! Thank you so much girl, you are a wonderful friend!

For your entertainment, here's a little excert from Jocelyn's (who went to school with Helena and I) blog:

"This afternoon i was talking on "Skype" (intranet video call) with Aisha in Holland! Aisha "skyped" me since it was a special occasion! A mutual friend, Helena, was visiting her from Stockholm, Sweden. Helena, Aisha and I all went to school and did girl scouts together in Tunis, North Africa in 1978. I have to say its been maybe 20 years at least since we all were on a phone call together- let alone a video call! At any rate during the call, my doorbell rang, it was Ella (with her visiting Grandpa) coming to see if Zara was awake. I wasn't going to open the door since i was so excited to be on the call and Zara was alseep anyway...
So I just mentioned to Aisha and Helena, "Oh! its the cutest little girl Ella from Sweden coming to see if zara is awake, but since she isn't.." Helena cut me off and asked
if Ella had a younger sister to which i responded, "yes its M----!"
I could see Helena's expression turn to recognition and she said "OH!!..Her grandfather was my old boss in Vienna, he was the Swedish ambassador there!" Needless to say, I rushed outside and dragged them in.. both grandfather and Ella spoke to Helena in Swedish to make the connection! Turned out it was Ella's OTHER granddad that was Helena's old boss at the Swedish Ministry offices in Vienna, Austria.
Aisha and I were left sitting laughing at each other! It was amazing.. and yet so typical of us! "

My medical summit

I had my meeting on Monday with Dr. Jiya,Dr. Paul and Dr. Lips and the verdict has been spoken. There will be 1 to 3 operations. The first is of the top 5 vertebrae and then possibly we will move on to the bottom vertebrae and then there the pin in my left leg. If he doesn't manage to get that done in the first operation, there will be 2 operations instead. After all that is settled with, they will regroup and take a look and see if they might approach the tumor from the front and that would mean the chest operation will take place later on. So 2 to 3 operations will probably take place. More on that later-
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I can also adjust...

I can also adjust the text after it's been posted so that's pretty cool and well at least I can tell you my information once I get it from the hospital. I'd just call this number. I'm so excited. This is really great.
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It works. Yey.

It works. Yey. This is going to make my life so much easier. I know I can only put very short messages on here but at least I'll be able to get to you much faster so I don't have to wait til my arm works or anything, so... and it works pretty fast too. It's on there like within 5 minutes so. Wow. This is really great. I can put my messages on here at a distance, anywhere I am in the world I guess as long.
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Working with new technology...

Working with new technology dial2do. Thank you Rebecca Clear for this. I can now write my blog without having to type. I can just speak and put my information on the web. So this is an interesting test which I'm going to check out. As for the rest we'll see in a second.
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Iodine Treatment

I am at the VU Hospital for my periodical iodine treatment starting today, Friday, March 27. I expect to be back home on Sunday evening. You can expect me to fulfill my promise about sharing Helena's visit with you as soon as I get back on my feet.

In the meantime I can be reached at +31 (0)20 7955193.

No visits allowed ;-)

Hard headed me

Well, I've had another marathon. Mom, Kiara and I set off to see my brother in the North of France last weekend. We drove there on Friday evening and stayed at my friend Tineke's house. The drive was killing (from 6.30 to 23.30)and we had to get up early the next morning to drive another hour and a half to meet him.













That was really great! Later that day we headed back to Romaine where we spent an additional night. Tineke has a house that was built in 1850 in a small town called Romaine near by the coast of Picardie. The home is really comfortable and very quaint and you can rent if from her for holidays! On Sunday we went to look for a stretch of beach and found it in le Crotoy. After a long rest we headed back to Holland. A crazy week for me as I am in bad shape due to the lack of medication right now as I am in preparation for the next Iodine treatment. I visited Lips today who seems to have gotten the jist of things. He is on top of my case now (for as long as that lasts) and has actually scheduled a meeting with all the doctors that have to decide about my next operation. I feel much better now that I am depleting the hospitals sources. Here's some good news though. I finally got the MRI for my head. Here's some before and after pics. Doing really well!

Now is that promising or what? These pics aren't taken in exactly the same position because I chose the slice with the most tumour on it in both directions.

The remainder is probably scar tissue. Van Triest will have to look into that.

So, I go in for my Iodine treatment on Friday. Will write one more post before that about my friend Helena's visit who's here now!

The rebirth of cool

It has been a crazy week trying to manage my case at the hospital. After sending an e-mail to Dr. Lips about all the problems I am having with the communication at the hospital we planned a meeting for yesterday. I threatend to file a complaint and have witnessed Dr. Lips to be the sharpest he has been in the last 2 years. We have come to the agreement that my case is so complicated that within the realms of the modern hospital World, they are unable to come up with a solution. All in all I will keep managing my own case...I have been promoted to personal assistant in my own medical management. Now that all of that has been said and done I have decided to file an advice rather than a complaint. I believe it is more constructive and it should serve my personal purpose. I now know more about my operation. The operation will be done from the back avoiding the risks which they feel they should not take. A small note to make is that the radation therapy once again appears to be working.

5 vertebraes in the thoratic area will be fused in the top area. The bottom thoratic vertebrae will also be stablized. In other words...I am back to square one. In the meantime, I am having trouble walking due to tumour in my tailbone. AVL is looking into the possibility to radiate that area once more. All in all despite a good count of Thyroglobulin my illness does seem to be progressing. I am still fighting like a real lion.

On a more cheerful note; I set to work to set up my own company again. My goal is to generate work for about 1 day a week which I will be able to do at home in my own time. I am very proud to pronounce that I have contracted my first client today. I have a job consisting of 55 hours between now and the first of october, which seems just right for me. I will be able to do the odd job alongside that. I hope to be able to make up for the loss of income. I am allowed to earn up to 20% of the last earnt salary prior to taking ill. Renaissance Communication is a fact. Talk about the rebirth of cool! Other than that I have been extremely busy organizing the phone and car...etc. Why does that take so long? And can't people get anything right on the first go these days. It is soooooo aggrevating! OK bye now....

Moving along

I'm getting my stuff done. Last week I took Kiara to the Tarzan musical which I had promised a long time ago. She really enjoyed that. First we went to my neice's (Valerie) home which I have been intending to do the past two years. It was a wonderful visit and great to see her new appartment. Valerie lived with us for two years at the beginning of her studies, she is now almost finished and will start working as a psychologist pretty soon.

On Friday Marcus and I headed for the opening of the new 707 Brand Communications office. 707 was a company that Pricewaterhouse Coopers worked closely with.

They have supported me tremendously throughout my illness. The interesting thing is that the office they have moved into is the same office building that I worked in when I was with War Child. They did the place up beautifully in fashionable purple. It was nice to be doing something else than recovering at home. We had a great time. It was also great to experience how strong my professional network is. As mentioned before I hope to revitalise my own communications company, Renaissance. My main goal is to work from home for a few hours a week. I put my money where my mouth is and actually went to talk to my first potential client this Monday. It went well and there will be a follow-up on Tuesday next week. I will keep you all posted.

I have been pretty busy arranging things like transferring my cell phone number from PwC to my own company and I also bought my car, which means registering it and getting an insurance etc. etc.. It is incredible how time consuming that can be. There is really no organisation these days where you can just get stuff done without problems or delays.

Last weekend Kiara and I stayed at Marcus'. Kiara and her friend Jermaine recorded their song at the studio's which Marcus is running. They made a recording of a song composed by Kiara to admit for the Eurovision Junior Songfestival. The song was great I suppose they are on their way to auditioning. Marcus was quite a magician in the studio.

Despite all the stress, Marcus too is getting along well. Multiversum has inspired him to make music again and particularily to make his Reggae music again. I wonder where it will take him this time. They are creating some fantastic tracks there. More on Kiara's endeavor later.

I had hoped to get through the month smoothly but I was actually in the hospital yesterday from 11 to 18 hours. I will write up on that in my next post. I had radiation therapy on my rib and my shin. In the meantime I am having trouble walking. My left hipjoint seems to be deteriorating. I will be talking to Pluymakers on Monday and will be sure to address the issue. I don't have a meeting with Jiya until the 30th of March. As you can probably tell, I still don't know what is going to happen about my operation. At least Lips has already talked to Jiya. I don't know why everything is taking this long. I have come to the point that I will file a complaint at the hospital. I wish I could use my energy in better ways.

A new phase

March the 1st has come. This week was the last week that I was connected to Pricewaterhouse Coopers. On Thursday I went into the office and brought back the goods. A difficult day as it was a time to say good-bye not only to my co-workers, but also to a lot of dreams.

I reallize now that I have always been extremely ambitious and until I joined War Child I did not feel like I was getting the chance to work to my full potential. As short as I was at PwC I was made to feel what I am worth. It was a time to make plans for a future career. I was going to do great things. And what got me there (making plans) was sure to get me where I wanted to go. Well, life is full of suprises. I honestly thought I would be able to go back. There is no way that I could have known how much time I spend going in and out of treatments in advance. I still think that if my head had been treated earlier I could have at least created another position at the office. Well, I am now officially out of work and have been granted social security. It was a shock to see that the amount was not based on my last salary, but on the last salary earnt before I was ill. This means that it is partially based on my income at War Child which was not very high, it being an NGO. This is an even bigger motivation to pick-up where I left off with Renaissance. My own company. It was necessary for my to round off this period before moving on to new options. My ability to work has changed entirely so I will have to focus on fun jobs with a broad planning. I took this week to rest a lot as I had few hospital meetings. I have also started to orientate on my future. I will certainly inform all of you when I launch my business. I still do not know what is going to happen about my back surgery. I am certain that the Turkish Airways accident is getting in the way of my doctors getting together. 15 people were admitted to the VU hospital, 6 of which had to have back surgery. Dr. Jiya is not only an orthopedic surgeon, he is also a traumatologist so he will most certainly be held up. It's kind of nice to do other things for a little while. I have a month of relative peace. If only my angst would disappear.