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.

Memory Lane

With the upcoming surgery and all, there is the realization that things might not be the same afterwards. I have stolen the month of March to take a trip down memory lane. There's places to go and people to meet. I made a headstart this week by dining and lunching with old friends. Tineke and I had a Japanese dinner on Tuesday, finally a one on one. Tineke and I go back 22 years, she is a sturdy given in my adult life. We talked about the latest developments and much more. When our bellies were filled we topped them off with coffee and applecake at Le Grand Café, which we used to frequent when we were young student. The interior has totally changed for the worse. We much preferred the mint coloured walls and art deco style which they had before. It's a strange idea to reallize that we used to spend hours there 20 years ago.

Wednesday afternoon I had a brief lunch with John. It was great to hear that the kids are now grown and independant and that Marij is doing great business. Afterward I drove past my first appartment on my way back to my parents.

At night something really special awaited me. Frank had organized an evening for me to meet up with all my friends from when I had just moved to the Netherlands. (Frank, Bernadette, Birgit, Ronald, Lydia, Theo, Marjan, Peter) This pack of wonderful people were truely significant in my young adult life.

It is interesting how I have kept in touch with almost all of them! 9 of us got together and had a meal across from De Pomp, and just down the road from

the 'Small World' Café where we originally met. It was a fabulous evening. I have a lot more reunions planned, Like a Rosemead reunion and an ACST reunion...I can keep going on and on..... Oh well, anything to keep a girl away from the OR.

Four seasons in one day

Lying in the depths of your imagination

Worlds above and worlds below

The sun shines on the black clouds hanging over the domain

Even when youre feeling warm

The temperature could drop away

Like four seasons in one day

Smiling as the shit comes down

You can tell a man from what he has to say

Everything gets turned around

And I will risk my neck again, again

You can take me where you will

Up the creek and through the mill

All the things you cant explain

Four seasons in one day

Blood dries up

Like rain, like rain

Fills my cup

Like four seasons in one day

It doesnt pay to make predictions

Sleeping on an unmade bed

Finding out wherever there is comfort there is pain

Only one step away

Like four seasons in one day

Blood dries up

Like rain, like rain

Fills my cup

Like four seasons in one day

Crowded House

Major stress

The past two weeks have been crazy. In the night of Thursday going on Friday I found myself at the first aid department because I thought I had broken my right arm. They did not find anything, but the next day I was told that the snap that I heard in the middle of the night was probably the last part of my first rib breaking off, giving me pain in my upper arm.

Friday a week ago I had a meeting with Dr. Welvaart a general surgeon. He was asked to look at the tumor in my back and give an assessment for the new surgery of my back. Dr. Welvaart did a great job in telling me the most horrible news. It hit me like a ton of bricks. He explained that in order to remove the tumor, they need to approach it from the front, implicating that I will have to have open chest surgery (usually associated with heart operations). This is a very invasive method and has many risks ranging from bleeding to infections to paralysis. He explained how the procedure would take place and then asked me if I wanted to go through with this. A strange question if you are the subject. I do not really have an alternative except for waiting for my vertebrae (t1) to collapse. I suppose that some people give up at this point. There is no question that I am ready to give in to the cancer. I spent the weekend telling my family about what was going to happen and decided that the risks are so great that I do not want to go through with this before April, giving me a little time to do some things which I have wanted to for a long time such as going away for the weekend with Marcus, and taking Kiara to the musical of Tarzan, and visiting my neice and my brother. When you are this busy getting better you just don't find the time to get around. Then there's my friends in Zevenaar. I have to see them. So Tuesday when I had my talk with the orthopedic surgeon, Dr. Jiya, I had two things on my mind. Postponing the operation and some hope that they would manage to do the operation from the back anyhow. I got both but it was a much less than satisfactory converstation. Dr. Jiya had not read the recommendations from the general surgeon and didn't have a clue what I was coming for. He approached the matter like an orthopedic surgeon would and decided that he was not interested in removing the canceric matter. His interest was to stablize the vertebrae and to try to free the nerve which is giving me trouble in my arm. It was a horrible conversation in which he strutted his ego, making sure that we knew that Dr. Pluymakers was his assistant. He also retracted the deal made with Dr. Lips to monitor my bones in the orthopedic department. I was devastated as Dr. Pluymakers had arranged this for me and I believe it was the best decision made since the beginning of my treatment. I was frustrated and Marcus told me to give up talking to Jiya as he wasn't listening to me anyway. So we left. I took this story to Dr. Lips on wednesday. Dr. Lips agreed with me that this was not the way to go about things. He will be talking to the other guys soon. Dr. Lips agreed that we should try to reduce the cancerous tissue. So all I know now is that I need an operation. I still don't know what they are going to do. I hope to hear from Dr. Lips this week.

After a week of major stress Marcus and I left for Ijmuiden for a luxury weekend. We went to the Sauna in Santpoort and stayed there all day and watched a movie. Then we spent the night at the Holiday Inn in IJmuiden. The weather was horrible so we stayed close to the hotel until the evening. We ended the weekend at a terrific fish restaurant called De Meerplaats.

Rachelle's wedding

Last Friday was a really busy day. Not only did I have radiation therapy, but my friend Rachelle got married. That meant two rides to Amsterdam, but it was really worth it. Luckily, I did not feel the pain in my arm until that evening. Rachelle and I go way back 23 years. And actually more.

Our families have been entwined for two generations, as her father was friends with my uncles. I met Rachelle after high school at college. We both studied physical therapy for a year and then went off to do something else. We have been in touch for all those years and I was actually with her when she met Remco. That gave me the very special position of being witness to her wedding. There was no way that I was going to miss that.

It was a fun day and we met many nice people. Not to mention the food which was delicious. We didn't make it to the party as I was pooped by nine which I had expected any way. We made our way home and I went to bed quickly.

The next morning we were up early because Collin had signed up for Holland's got talent. The auditions were at Blue Circle in Hilversum so he spent the night here. We were there at nine in the morning. We had to wait in the freezing cold, but luckily once we got inside we knew that this was not in vain. Collin's was the second act to try out. And he was also the first to get through the auditions. I am so glad I told him to combine his BMX Flatland tricks with his human beatbox act. That would increase the jury's attention span. Pretty soon, probably February the 19th, he will be off to the next appearance at the Gooiland theater. By 10.30 we were home again. I was happy to hit bed immediately. I think I stayed there the rest of the day.

Time to relax!

Also click this pic!

Finally a normal day

While using the Amintryptaline (the anti-depressant which was supposed to act as a painkiller) I felt really tired and depressed. I chose to not continue using it as it was effecting my QOL too much. I decided to stop using it which meant that I had to reduce the dose gradually. This morning I visited my friend Ineke which was a nice change after having been stuck in my house for most part of January. It is the first whole day that I have managed to stay up without feeling totally exhausted. I have been given other medication for the pain in my arm but without having started to take it I am already wondering if I should. It will effect my driving which to me is a very good reason not to use it as driving is what gets me around in the first place. These past weeks, not being able to drive, I felt very dependant and I am in the process of getting there again, driving short trips at a time. The pain department has now prescribed me medication for epilepsy which is supposed to help against the nerve pains. I don't know, but that just does not feel right somehow. This is pretty heavy stuff and should I really be stimulating my nervous system after having had radiation therapy on my head? Tomorrow my friend Rachelle is getting married, so I think I might as well wait until monday and call the doctor before I start using my prescription drugs.
I took an important step today. I had decided that it was time to go for mental support. I have been coping really well, however as time progresses it is becoming harder and to handle new disappointments concerning my health. I walked there and back again. It felt really good to be moving around in the fresh air again. It was a beautiful day and the sun was shining.

One thing that really bothers me is my Pavlov reaction to hospital admission, the food, the smells etc.. I figured that if it was possible, I would like to get over my hospital trauma's from past two years. Everytime that I am admitted to the hospital I feel repulsion. I feel nauseous and stop eating. When I was in for my last surgery the orthopedic surgeon had expressed his concern about my loss of weight in the days running up to my admission and he told the food department to watch me. I had been labelled the anorexic chic. I suppose that is how the first thing that I ate after my operation ended up being a piece of cake! My piece of cake was literaly that. Anything but hospital food would do for me. I survived on crackers, jam and the tea that I brought from home. Oh well!

I started a programme today in which a most interesting methode called EMDR was used. It was really hard but I believe it will help.

Almost 9000!

There have been more than 8500 hits since I started Birdsperch in May of 2007! We are heading for 9000 hits.