Birdwatch

Cito CITO

2011-03-07T00:53:00.020+01:00

CITO is a standardized test for highschool admissions. This test is given in the last year of the primary school in the Netherlands used to assess the academic level of the students. It is rather important to do well, as the school of your choice will look at your score when they decide to admit you or not. The scores coincide with the different learning levels of the Dutch highschool system. I am adding an overview for the Dutch readers as most people don't have a clue what the cito scores signify:

cito score versus vervolg opleiding:

Basisberoepsgerichte leerweg: 501 - 520
Basis- en kaderberoepsgerichte leerweg: 519 - 525
Kaderberoepsgerichte leerweg : 524 - 528
Gemengde / theoretische leerweg 529 - 533
Gemengde / theoretische leerweg en havo 532 - 536
Gemengde / theoretische leerweg en havo / vwo 535 - 541
Havo 537 - 540
Havo / vwo 540 - 545 Vwo (Gymnasium en Atheneum) 545 - 550
Anyway, since Christmas Kiara has visited many schools trying to determine where she will go next year. The school of her choice requires the level of HAVO/VWO. Last Tuesday after school I saw a lightning flash fly by, or so I thought. It was actually Kiara telling me the she had scored a 547 out of 550! This is a score well into VWO level. It sure was party time! We celebraterd with Mom and my sisters Adrienne and Aldith. I am so proud of her as she worked to the best of her capacity. Her attitude towards school is really wonderful and it is so nice that she can procede however she wishes.

Here is Kiara's quote which was published on the school website:
"We zijn de laatste tijd veel aan het oefenen voor de CITO. vooral de laatste week, nu maken we elke dag ongeveer 3 oefentoetsen. Mij lijkt de CITO toets erg leuk, omdat je niks hoeft te schrijven en niemand je afleid {hopelijk}. We zijn ook in de krant (TROUW) gekomen. We zij met school op de fiets naar het Comenius college geweest en de volgende dag naar Groenhorst college."

"Lately we have been practicing a lot for the CITO exams, especially the past week. We now do 3 practice tests each day. I think I will really enjoy the CITO exams because you don't have to write so much (MC) and nobody is able to disturb you. (I hope.) We also made the TROUW newspaper with an article. We visited the Comenius College by bike and went to Groenhorst college the next day."
Kiara

Later that week Kiara and Aldith were the photography team(#imgcrew) of yet another event!

My sister Angélique celebrated the fact that she received her Masters Degree!! Congrats to her, I am so proud!

What's next?

2011-02-17T02:34:00.006+01:00

As the building goes on rapidly, me moving into the Entrada is getting closer and closer to a reality. The struggle to get there is emense, but I seem to manage. (our flat will be situated where the yellow frame is. This Photograph was taken by Kiara.)

My stay in the hospital lasted 2 weeks. By the second Friday the urologist opted for surgery. I had wat they called a crying bladder in Dutch. Meaning that the lining was so thin all around that there were a lot of tiny wounds all around. They fixed the problem by scorching the lesions which finally put an end to the severe bleading. In total I was given 11 packs of blood, 2 pakcs of trombocytes an 1 pack of leucocytes. I have now become the honorary member of the vampire squad.

No seriously, this was really a close call, my GP tells me a coma was only a day away. Thanks to Cecile from Buurtzorg for being so attentive and persuasive. I was in first aid, 40 minutes after her arriving here. Things went way too fast for me. Once again the Gooi and Vechtstreek Ambulance did a fabulous job. 20 minutes from the Dr.'s call to delivering me at the hopital with a little hold-up caused by yours truely cause I wanted to finish breakfast and make an important payment for the Entrada project.

Once I was home I got the heebee-jeebies. It wasn't until then that I reallized that this bleeding had almost killed me. It was strange to hear my family say that they were worried I might not be coming home. I took about two weeks to rest and come to terms with everything. I had been prescribed peace and quiet and was told to stay away from stress.

A lovely suprise was that both Ali Ball and Lalu Carter (old schoolfriends from Rosemead) came to visit me. I am sure that was part of the remedy!

I came home paralysed in both legs. The process had carried on in the meantime. This also meant the pain had deminished somewhat. When I got home my new bed had arrived. It offered me an opportunity to sit upright in bed. I got practicing and was soon sitting up 2 hours at a time. To me this meant that sitting in a wheelchair is definately a possibility. My physical therepis t who ensured me he could do the job suddenly decided that he wasn't capable. In fact he told me I wanted to stuff that I couldn't. This annoyed me so much it got me sharp again. I did some research on the internet and checked out De Hoogstraat in Utrecht. It is a rehab center like the Trappenberg, only, they ar specialised in Paralyses. The had an excellent brochure online which proved that my premonition that I should be able to do more than lie in my bed was true. A call to my GP has got things moving. Dr Bussemaker from the Trappenberg, who incidently has turner around 180 degrees and is doing more than can be expected of her, was called by my GP and she is making plans for me as I write.

Unfortunately I woke up one morning with a strange deformity of my sacrum. It looks like it is fractured and it is extremely painful. I have been waitng forever for an x-ray which will finally take place tomorrow. I'm afraid they won't be able to do anything about it, so I hope the pain team has a solution.

Back to the hospital

2011-01-14T08:50:00.003+01:00

The last couple of days I have been feeling very tired. Since monday morning there has been blood in my urine. This is a common problem with catheters so we waited to see what would happen. By Tuesday morning I was losing so much that my nurse Cécile called the doctor to take a look. By 1pm I was admitted to Tergooi Hospital in Hilversum. They are flushing my bladder with saline solution and they gave me two packs of blood to treat my anaemia. I spent the night here and have to stay here until they stablize me and find out what the cause is. It is always scary with the cancer, as many scary options could be the cause of my problems. By last night many tests were run. The scariest scenarios were tested negative. It looks like my pain medication is causing the trouble.
I have to say that they are very thorough. Last night I was given a transfusion of leucocytes and today I have been given 2 packs of blood. I am starting to feel much better. More info later!

Kill the Beast III

2011-01-03T05:21:00.002+01:00

And the battle continues. Dr. Lips and Dr. Dahele haven't given up on me. Today I am going to the hospital to start with the new treatment plan.
I will be having radiation therapy to my sacrum, my rib and my left arm. These being the first treatments that are supposed to slow down the all-round deterioration but mostly to tackle the pain.

I am also having an MRI done of my head to monitor the skull.
Then last, but not least, I will be meeting Professor Boven (oncologist) to discuss the possibility of chemo and/ or experimental therapy with Everolimus.

Sometime this week I will write a very detailed account of my physical state.

Will be home tonight! Let's hope the ambulance doesn't take forever.

#happytwewyear

2011-01-02T06:01:00.010+01:00

Well made it again! 2011, who would have thought that on April 30th 2007? The doctors thought I would have months to live and basically did everything to ease pain and discomfort.

Since then I have been into Rehab 4 times, have had a 3 year relationship, launched my company, made numerous trips and most important of all....seen my 7 year old Kiara turn into a teenager.

How is this possible? I think the answer is FOCUS. I have focussed on my goals: what, how,where,when,and with whom do I want to do things, and how do I want things done.

I have been known to be a real control freak and have been given names like The General, The Boss, Schwarzkopf....etc. I really hated it and felt like people misunderstood me in the past. It hurt. I always heard the negative undertone. Yes, I am in control of everything that I do and I try to drag my environment along in my wake, but I dare say my intentions were always noble. I wanted the best for everyone.

It is this control that has gotten me this far, if only it were because I have been able to avoid scarry mistakes due to lousy communication in the hospital.

So back to the FOCUS! For this year I have set 3 goals which I intend to target with military precision.

I have to make it to Kiara's 12th birthday (19-07-1999) so that she has a say in where she wants to live if I die.
I have to be around when Kiara starts Highschool.Gotta see that! Who wouldn't!
I have to make it into my new home at the Entrada.

Tha t's it! That is what I need to do!

3 years ago I told myself I was going to make it to Kiara's 10th birthday, I am not doing too bad I suppose.

I celebrated my goals yesterday on Twitter where I held one of my virtual parties yesterday afternoon. If you are interested follow the tag #happytwewyear on Twitter. You can also see my speech here. I'm afraid it's in Dutch though.

So seeing as FOCUS works for me, I wish all of you the very same. Please live your lives like they are going out of fashion, and be nice! How hard is that?

Buurtzorg

2010-12-26T00:00:00.004+01:00

I can't help it but blood is thicker than wine. The only reason why I can stay home to be nursed is because Mom and Melvin are here and because I have a professional team of home nurses looking after me. The regular nusing companies are a disaster, but I have found one called Buurtzorg with a modern concept that works really well. Buurtzorg has small clusters of office units around the country. The clusters are made up of nurses, each one of them a freelancer with the full responsibility for clients from beginning to end. They cut a lot of red tape, saving time and attention for better care for their clients.
A Dutch news programme made an item about them and Buurtzorg asked me to participate. I did! And all of this in a week in which I really wasn't feeling well at all.

Though at first I had the impression that the item was going to be a diluted message, I have to honestly say that Buurtzorg looked pretty good on TV. It was fun to be involved in PR and Communications again.

Chech this out:

Nieuwsuur, Thursday 23 Dec 2010. Start watching at 15'50".

Bekijk de video in andere formaten.

Christmas Eve 2010

2010-12-24T19:29:00.013+01:00

I write this post with mixed feelings of sentiment. Looking back I seem to have gotten stuck in time somewhere at the beginning of the year. Kiara and I had had a wonderful Christmas last year, first with Marcus and his boys and also with my family. I remember us pledging that there would be a next year together. It was a happy Christmas.

Then the new year started in which Kiara's musical Amandla Mandela was in full swing. Despite a new pin in my arm I tried to go to as many of Kiara's shows as possible. There was one specific time that I felt so weak that I went to get my wheelchair in the intermission. I wondered if I would make it through her shows.

I did! I attended her last show in Sittard and my sister Angélique drove us. By the time we got there paralysis made it's entrance in my life. Tumor mass in my spine was damaging my spinal cord.
We drove straight from the show to the first aid and I was admitted to the hospital that day, March 28. Since then it's been an up hill battle trying to defy cancer.

It all came to a screeching hault last weekend which looking back now seems like an unreal dream. I was supposed to have an Iodine treatment but wasn't feeling well. There were problems with my bodily functions.

The cancer has progressed and a rather high level in the back, devastation is no longer postponable. As usual my inner radar told me something just wasn't right. After intensive diagnosis the neurologist told me that I am to expect to loose all functions from the bottom of my chestbone downward pretty soon. All my efforts to walk have flown out the door now.

As things go Mom and I got caught up in the medical carrousel last week. Tests were done, radiation therapy was given, meetings were held, my pain was managed etc. and eventually, for the first time, I was given a family room on the oncology ward. I couldn't help noticing that I was the liveliest patient there, not to be interpretted wrongly, because I was one of their worst cases. I would have never been given that room otherwise. It was comfy there and Mom was able to spend the night there with me. What happened in that room could best be described as private, I guess. I can't describe what happens between a mother and a daugther and how confusing that gets when your own daughter also comes by. The dynamics of caring, sharing, protecting, and wanting to ease the pain for each other are very complicating. Kiara visited on Saturday and we had our talk. It gets harder each time but she makes it easier for me with her incredible capacity to deal with tragedy. I am so proud of her level headedness, her intelligence, her ability to plow through a mourning proces. She uses maths and her favorite things for comfort. Focus somehow eases the pain. Kiara went home with the Kleps who took her into their home lovingly. She was OK. Mom and I spent another 3 days in the hospital. I underwent a radiation session and the Docs wanted me there for observation. I made use of the situation to have my first shower in almost 4 months. It was so nive to feel the water on my skin that the instant it touched me I cried. I cried for a good hour and felt so good afterwards. (The showering is lying down on a special showerbed).

I came home in a winter wonderland. My house looked like a fairytale cottage. I haven't seen this kind of snow since 1985. I remember that that year I had pain in my knees and that they had found week spots on my Femur. Could that already have been the cancer?
When I came home Mom and Melvin swapped shifts. I had come back as another woman than the one that left on Friday. We had no idea what we were into. Even all the nurses, physical therapist, and my GP were so blown away, that we decided to just go with the flow these two weeks to see where exactly we are at. We focussed on Christmas. We have to get it right this year. My home was the opposite to Scrooges... it was all but Humbug.

Life continues at number 1.

Speed post

2010-12-18T23:06:00.007+01:00

Had radiotherapy done to TH5 and TH6. In the hospital to monitor swealing and to wait for a CT scan of S1. Then home on monday.
was also administered a bone fortifier by drip.

Mom is with me now and Kiara came to see me this afternoon.

Going through the motions

Dooms day, in the end, doesn't stay away

2010-12-18T00:19:00.010+01:00

Today I was once again admitted to the hospital for an Iodine treatment. The past two weeks I have had a lot of body-functional complications and new types of pains. I have had to start to catheterize and am finding it difficult to control but also to feel bowel movement. I still have been managing to stand this week, but I was so winded. I thought at first that this was because of the new tumors in my lungs. The Dr. had called me to let me know that since July there has been a lot of spreading of the cancer going on. I went from a few nodules in the lungs to an amount that they weren't able to count any more. This in both lungs.

As I practiced my Physio more and more it started to hurt in the rib area. I thought at first that I was me straining my muscles, but by Wednesday evening I started to have a hunch that it was the same pain caused by the compression of the TH 6 vertebra that was operated on earlier this year. I called Lips and requested a meeting with a neurologist before I started any Iodine treatment. And that is precisely how it went down. In the afternoon they did some imaging in the MRI scan. I was in sooooo much pain because the vibrations of the sound were strumming my painful nerves for a good 30 minutes or so.

2 hours later Dr. Lips broke the news to me, together with Dr. Van Schie that there is progression of the tumors in TH 5 and TH 6 and that basically it is such a mess that they can't operate any more. They will try to do some radiotherapy on it to buy some time.
In effect this means that within days or weeks I am going to turn paralysed from the breastbone downwards. This means that I won't walk again, but it could mean that it will be easier to sit with vigorous paintreatment which wouldn't work with the previous situation.

From there on the expectancy is that my bodily functions in that area will slowly start to shut down. To make sure that I am understood I need to tell you that this is technically speaking the beginning of the end. Now to really confuse you...I have not been given a prognoses. My Dr. says he can't because my medical history shows that I have an exceptional way of getting back on top of things. And this factor is so determining that by giving me a prognoses based on the medical facts, he would be cutting me short. In another case with another patient, the patient would already have died 4 times, and given where I am at now, they would be told they have 3 to 6 months left. Personally, I am feeling like I have more. I have to see my baby girl to High school and I have an appartment to move into. In Dutch we say, weeds never wither...Oh well. Taking it from here.

How I feel? I feel devastated. I am not ready to give up on life. I have too many things to do, too many places to go, and too many people that I really need to be with. Telling your 11 year old child what is going on is the worst pain anyone can have to go through.
We had a huge snow storm here. I was lucky to make it to the hospital. I have never seen so much snow fall at once! Maybe heaven was crying frozen tears? After hearing the news Kiara had a huge snow ball fight with all her friends. Sounds like healthy therapy to me. Thank you so much the Klep family for loving my baby like she's your own. This night was not easy.

I don't know what the next period will bring and if I will find the time and energy to write. But if you don't see me here you can catch me on Twitter from time to time as it's easier to write in 140 characters for me. Look me up under @AishaHunkar or just simply click the Twitter button on this blog.

I do owe you two stories though....one about my TV appearance that is coming up, and one about #Twanniversary, my online virtual twitter anniversary party that was sooooo cool. Check out the #hashtag if you can read Dutch and have Twitter.

In the meantime I want to share a fragment of Radio DJ Anita Undercover's program on Future FM. Start listening at 12'30". I'm sorry, it's in Dutch.But it's about the way I use Twitter and how I inspire people to really LIVE. She says that I have mastered the art of using Twitter's capacities to the fullest an also to benefit my life.

Iodine again

2010-12-17T05:41:00.003+01:00

Today I am off to the hospital again for a radioactive Iodine treatment. Back into quarantine. This time Mom is coming with me again. Should be out by Monday. But I have so much more news that I hope to write at least two more posts this weekend from my hospital bed.

Too Much Too Little Too Late

2010-12-17T05:30:00.001+01:00

The new post is under the previous one as I started to write it before the last post. Please scroll down two posts.

Small news update while you have to wait for the real post.

2010-12-12T15:20:00.002+01:00

Hi, my dear friends all over the World. I thought I'd post a small message here as I have been unable to keep up my blog due to my health situation. I know that many people have been worried, and rightly so. The last couple weeks have been a real ordeal and I have needed all my energy to get through this. The good news is that may pain has deminshed quite a bit. But my body is failing me in a lot of different ways. The Doctors have found that the cancer has now spread to my lungs. This was a huge psychological blow. At the moment I need to catheterize (hopefully temporarily). I lost weight and am unable to eat at all. I have lost approximately 20 pounds in 3 months. I am however slowly getting back on my feet. Last week I got up and walked 12 whole steps. Mom and my brother Melvin have been caring for me 24/7. They are so wonderful and I am so greatful for such a supporting family. Luckily I still get to be a mother to Kiara! :-). I Still looking forward to the little things in life that make me happy. Though it's been really hard, I have managed to keep my fighting spirit up. With regards to visitors, I do miss you guys, but I still experience that a visit is very energy consuming. If you do wish to visit, just drop me a line and I'll see if we can work something out. Take care everyone!

Too Much, Too Little, Too Late

2010-11-30T10:14:00.019+01:00

Too Much

The past weeks it has been too much for me to write my blog. I have needed all my energy to focus on getting better. too much has happened to write it all down here but I will try:
After my visit to the hospital for my first check up after the RFA I really needed time to recuperate. After a couple of days I picked up my Physio regime again and found myself standing in no time. I made a little progress and actually got to the point that I took twelve steps again. The strain was huge though and every time I tried something new in exercise I found that I was straining a muscle elsewhere. I have been able to maintain the standard but I haven't actually made big steps.

My visit to the hospital didn't really enlighten me. They haven't a clue why I am in so much pain. They did tell me that they had only seen this reaction once before and that I should assume that in good time the pain would deminish. It did in the end but it took weeks. And I am still in pain, but it is less excruciating now. The morfine-like drugs are now for permanent use. Couldn't manage without the painkilling effect.

Too Little

The over all change has been too little. The huge cramps I had before had been replaced with areas with loss of sensation and other areas with more nerve pain. On a whole it did become easier to move. However there was too little to work with to go back to Rehab. Dr. Bussemaker from the Trappenberg's attituded turned right around. She has been in close contact with me since then and has been willing to help in many ways. I myself at one point had to say that at this rate, there was too little potential to move ahead to rehab. I decided that for now I would do what I could at home, so that I could at least be with Kiara and we will see what the future brings.

This meant that my family had to step up to the plate. Mom and Melvin (my brother), take care of me alternately. We are talking about 24/7 personal care which was only taken over for a period of 2 weeks by Adrienne my sister who was able to come over from France. The rest of the time Mom and Mel have had to put their lives completely on hold. Once again the social system in Holland has failed. For this kind of professional care at home I need to be declared terminal (that means that the procedure of dying has started) before I am entitled to the hours of professional help. If I am not terminal I have to go to a special home where I could get the care that for instance old folks would get. Those are the places where they give you precisely 3 diapers a day because more would be too expensive and rather than help you clean up after every bowel movement or pee, a diaper can reduce the amount of times that they actually have to work at your bedside. The Physical therapist would only come by 2 times a week and would most certainly not be concerned about getting me back on my feet. And what about Kiara. I will not have her living in an old croney's home. I don't have a huge stash of money hidden anywhere so...this is how things work out for me which is less than satifactory. We get help from Buurtzorg, a fantastic organisation and trained nurses come in every morning to wash me and check up on me. My GP has become much more involved and has taken over the general coordination.

Too Late

It is really too late to mention everything else that has been going on here. Besides caring for me, the family has gone to great lengths to clear out my house. When you are as sick as I have been the past 4 years you never get around to clearing stuff out. Slowly but surely your house changes into a warehouse where you can hardly breath. I got rid of so much junk that I think it filled two minibusses. My house looks much better, also thanks to all the help my friends and twitter friends gave me to fix up the outside. I was given a value statement 10K euros higher than before things were fixed up. This made it possible to get a good deal on my mortgage for my new house. I now own the new property! Funny cause the notary guy actually came to my house! (will post the pictures later)
A special mention goes out to the Suiks the Van Geenens and @Jettemetet and @Emhateha who spent days of there spare time to get things done. Many more friends helped out in the course of about 6 months to make things possible. Many of them were people that I had never met in real life but knew from Twitter.

Another wonderful thing that happened was Jocie Zara and Helena's visit. That was one huge trip down memory lane. Jocie and Helena are my primary school friends from when I lived in Tunisia at the end of the 1970's. These amazing friendships have endured the years, the constant changes of addresses and the huge distances that we have been apart from each other.
What is so remarkable is that you hardly need words to communicate because you all know exactly where you're coming from. This feel-good-sensation made me reallize that this was the feeling that I had so much been craving in my relationship with Marcus. And to be perfectly frank, I never did feel that. It gave me great comfort that that which I sought after, I already had. Friends who love me and who are willing to take me as I am. This picture was taken by Jocelyn. To me it illustrates that she was willing to put her fear aside to look at my fragility. Marcus has moved on and doesn't even pass by or give me a call anymore. His new girlfriend Nance makes sure that she posts enough information on her Facebook so that I know that she is already moving in with him. Well, what can I say...Good Virtue? I don't really think that I have lost too much, maybe just an illusion of my own that I had a partner who was willing to support me. NO! The best support has come from my amazing family. Due to my illness Mom and Dad have been driven to live apart for over 3/4 of a year. Understanding and love is glueing this famiy together. Cancer, if you let it, will not only kill you but it has the the power to demolish every form of relation, love, or security that we all need so badly. It is truely amazing, but also so painful to see that the seams at which my family is stuck together are as thick as solid wood. Cancer is devastating. Some times you just want to give-up so everybody else's life can go back to normal. The great paradox though is that if I die, their lives won't be normal ever again. So I keep up my fight, not only for myself but also for them. So Marcus, this once for you:

By far this has been the hardest post to write which is why it has taken me so long. Not only that, I really needed all my energy to get better. I need more space to inform you how I am getting along medically but will do so in following posts.

There is one little person that have got to mention. With all these things going on, Kiara has held up so wonderfully well. She has the capacity to deal with each hard blow that she gets. In the midst of many painful moments, Kiara keeps following her own course, bringing home straight A and B report cards and excelling in her Capoeira classes to a level at which she can now train with the adults. She is so proud and self assured that I can hardly believe it! In my eyes she has done a wonderful job in absorbing everything that I ever hoped to instill in her. After all that is what us parents try to do. At some stage you hope that they have reached a level at which, as a parent, it is safe to say that your kid will be OK and it will manage in life. This is crucial if you are this sick and you are not sure how much time you have left. Kiara is doing well and it is such a huge gift to be able to be home with her and still being able to be a mother to her. I truely feel that Kiara has already learnt so much much from life, that 'Yes!' she WILL be alright. My little sunshine propels me to keep moving on.. come on Mom, hang in there.

Checking the balance

2010-11-01T07:39:00.003+01:00

After 7 weeks at home after the RFA treatment, I am going to the the hospital for the first time for check-ups. Until now I wasn't able to travel due to the tremendous pain. I have managed to plan my meetings on one day, which requires CIA intelligence to accomplish it.

I am hoping that today will reveal some more information regarding my health. I am afraid that the dream team really doesn't know.

More later!

A post for my Dutch readers

2010-10-21T12:16:00.002+02:00

Deze kreeg ik van mijn vriendinnetje Birgit Scheeve naar aanleiding van het bezoek van mijn vriendinnen uit de VS en Zweden;

Op een dag zat een jonge vrouw bij haar moeder thee te drinken.
Ze spraken over het leven, het huwelijk, over de verantwoordelijkheden in
het leven en de verplichtingen die volwassenheid met zich meebrengt.

De moeder roerde in de thee en zei bedachtzaam tegen haar dochter:
"Vergeet je zusters niet.
Ze worden steeds belangrijker naarmate je ouder wordt.
Hoeveel je ook van je man houdt, hoeveel je ook van de
kinderen die je misschien zult krijgen zult houden,
je zult altijd je zusters nodig hebben.
Denk eraan zo af en toe met ze mee te gaan en
dingen met ze te doen.
En onthoud dat zusters alle vrouwen betekent.
Je vriendinnen, je dochters, je collega's en al je vrouwelijke familieleden.
Je hebt vrouwen nodig.
Zo is het met vrouwen".

Wat een grappig advies, dacht de jonge vrouw.
Ik ben een pasgetrouwde vrouw.
Mijn man en het gezin dat we zullen stichten zal zeker alles
zijn dat ik nodig heb om mijn leven waardevol te maken.

Toch luisterde ze naar haar moeder.
Ze hield contact met haar zusters
en maakte ieder jaar meer vriendinnen.
Naarmate de tijd verstreek, kwam ze er langzamerhand achter dat haar moeder wist
waar ze het over had.
Als door de tijd en het leven veranderingen en mysteries in een
vrouw groeien zijn 'zusters' de steunpilaren in haar leven.

De tijd verstrijkt
Het leven gebeurt
Afstand scheidt
Kinderen groeien op
Liefde groeit en vergaat

Geliefden overlijden
Harten breken
Ouders sterven
Loopbanen eindigen

Maar 'zusters' zijn er, tijd en afstand maken niet uit.
Een vriendin is altijd binnen bereik als je haar nodig hebt.

En als je alleen door dat eenzame dal moet gaan,
zullen vrouwen in je leven aan de rand staan om je aan te moedigen,
voor je te bidden, ten gunste van je tussenbeiden te komen
en je aan het eind met open armen te ontvangen.
Soms lappen ze regels aan hun laars en lopen ze naast je.
Of komen ze om je eruit te tillen.
Vriendinnen, dochters, kleindochters, schoondochters, zusters,
schoonzusters, moeders, grootmoeders, tantes,
nichten en buurvrouwen, allemaal zegenen ze je leven.
De wereld zou niet hetzelfde zijn zonder deze verbondenheid tussen
vrouwen.

Toen we dit avontuur, genaamd vrouw-zijn begonnen,
hadden we geen idee van de ongelooflijke vreugde en verdriet
dat ons te wachten zou staan.
Noch wisten we hoe we elkaar nodig zouden hebben en nog steeds
nodig hebben.

No pain no gain

2010-10-10T04:46:00.014+02:00

My last post was month ago. Since then pain has reigned. The pain is really indescribable but the best description I can give you is that this feels like I would expect a glowing hot rod pushed up your behind to feel like. I was transported home the Friday after my operation whilst my pain medication wasn't adjusted yet. I was given Fentanyl plasters and lollies (opiates) which are the strongest painkillers administered out of the hospital and even that did not help. This pain has dragged me through my lowest levels of conciousness, to the point that I was certain other people would have given up. I was feeling like the end might be really near, living one day at a time. I have lost so much weight that I have lost all of my reserves. Seeing as Dr. Lips prefers me to be 20 KG overweight, it means that if a really bad complication turns up now and I lose a lot of weight, it will be difficult to fight back.

I kept a low profile, few phone calls, hardly any visitors, no blogging and no tweets on Twitter by me. I had energy for one thing only and that was getting better. I had some quality time with Kiara which was both beautiful and confronting.

In the meantime I mourned the loss of my relationship. Marcus easily picked things up with his Nancy and seems to show little remorse.

On the brighter side of things, I passed the Trapp-test. As soon as my pain has died down I get to go back to the Trappenberg. Dr. Bussemaker is at least making an effort to repair the damage that was done. She is now keeping tabs on my progress which is very pleasant. A little birdy (never ever mentioning names) told me that my blog's impact caused quite some havoc at the Trappenberg. It was even discussed in the Management Team and some seem to think it was un-ethical that I mentioned the Dr.'s name. I don't intend to defend myself as this blog is about my life, how I experience it and what goes on in it. I have always mentioned my Dr.'s names so what goes for them, also goes for Dr. Bussemaker. My story about the past months is merely a reflection of what actually happened. I hope the havoc will do some good and that lessons can be learnt.
Remember 2 years ago when I had problems with Dr. Jiya?...well we solved them and got them out of the way. If things get better with Dr. Bussemaker I will be the first to report it. Moreover I believe that freedom of speech is still one of our virtues. I can't help it that I am a pretty good communications advisor and that my blog is read by an average of 600 people each week. All I can say is that people keep coming back to it, I must be saying something worthwhile.

This week finally it seems like the pain is slowly deminishing. They took forever getting the dose of the pain medication right. I am still training with the physical therapist and still manage to sit up and stand once a day. It feels like I will need some more time at home. I was struck by a bladder infection and now that that's gone a tendon in my arm is strained. After not eating for a week I am slowly starting to take in more food. I hope the trend can remain upwards for a while now.

Many rivers to cross.

2010-09-15T00:07:00.017+02:00

Just a short post before I enter OP again tomorrow. The last operation was succesful (Arm) but I have been in severe pain since. The pain is mostly in my pelvis and right leg and has been unbearable. What the cause is is not clear. I can only imagine that my positioning during the last OP changed the position of vertebrae or other bones. The pain that I am going through is mostly nerve-pain. All in all too much is going on in my life at the moment for one person to deal with. That would be physically as well as mentally. My battle against this dreaded disease is really tough and more than ever, it is asking alot from me.

Tomorrow at 8 o'clock I will be expected at the Angio department. They will perform RFA treatment on my sacrum (rear end of the pelvis). I am pretty scared though Dr. Meijerink has calmed me down a bit. As usual I hope to win this battle too. I have been afraid of this treatment because my general health is weak. I am worried only about possible complications and not being able to win that fight. Precautions are being taken to avoid infections. That is the most important issue.

As far as Marcus goes, I know many of you have questions about what happened. All that I am willing to say is that despite our recent break-up he is being very supportive of me.

Another matter that has been bothering me is the fact that Dr. Bussemaker of the Trappenberg has thrown me out of the system. She is allowing me back in to the Trappenberg only if I pass her (impossible) test. She expects me to be able to perform all my tricks by next week Thursday. By tricks I mean that she expects me to be able to sit on the side of my bed, stand and make a transfer with a lift into a wheelchair. Those are the 'tricks' that I was able to do when I left the Trappenberg and she expects the same level of performance after 1,5 weeks with two major surgeries. As you can imagine, I am pushing myself to the limit to reach those standards (not good for me I need rest). I have informed my doctors in the hospital and they are enraged. They have taken over the handling and are arranging an admittance for me.
After all, I have shown that I can and will do the needed work and not only I but Kiara also deserves the best possible solution for a rewarding life.

Will be gone for a while and Angelique's request from the last post still stands.

I should be home this weekend if we can manage the pain and I will need the quiet and comfort of my home for quite a while. If you wish to visit me, contact me through Twitter or e-mail and I will see when we can meet again.

Once I am home I will continue to have visiting hours. I would like to ask everyone to not come to my home unannounced. I need this to be able to take this hurdle.

Last but not least, thanks so much for Tweepcare. You guys and my friends and my neighborhood have been amazing! Once I do get past this hurdle the next step is to sell my house so that Kiara and I can move on to the next positive stage...The Entrada, my dream castle!

Please say a prayer for me today and do click the vid!

Back in hospital, no visitors please!

2010-09-09T16:13:00.006+02:00

Dear readers,

This is to let you know that Aisha is back in the hospital, recovering from yet another operation. The operation restoring the pin in her left arm was successful. Aisha can be reached by regular mail at the following address:

Aisha Hunkar

Room 2c.36.4

VU Medisch Centrum

P.O. Box 7057

1007 MB Amsterdam

Aisha is in a lot of pain (not due to the operation) and desperately needs some rest. She has asked me to let you know that she will not be receiving any guests during her stay at the hospital. So if you would like to show your sympathy and support, please do so via the above address or by Twitter. As soon as she is ready to receive visitors again, she will let you know.

As a concerned sister I urgently request that you comply with her wishes. I wish to thank each and everyone of you for the support you continue to give Aisha. I join Aisha in expressing the wish that she will soon again be well enough to enjoy your company.

Angélique Hunkar

Big-up

2010-09-06T12:28:00.008+02:00

If you feel the urge to leave a nice comment behind on the website of the RAV Regionale Ambulancevoorziening Gooi- en Vechtstreek, you can do it here. Please do not mention what they did for me (not everyone needs to know), but DO mention my name.

2010-09-06T00:57:00.022+02:00

I left you with a cliffhanger in my last post. Yes, my relationship did end. People seem to want to know who ended it. Well, if you really want to know I did. I had a hunch that it was time to stop and I should have had that hunch 6 months ago. All in all I am not going to elaborate on details here. All I can say is that being sick does magnify every emotion.

All this happened in a really difficult week in which I had a lot of pain and have had to deal with great anxiety for the next two operations which the hospital has set up for me. The goal was to do both operations at once so I would only have to undergo anesthesia once. This however, is not possible as one is done in the Angio room (bloodvessels) and the other in the OR. Anyway I find myself co-ordinating my care again as I am trying to do both during one stay at the hospital. I have to call them in the morning.

As you can imagine besides the physical pain I have been on an emotional roller coaster this week. The man that I dedicated the rest of my life to is no longer a part of it. It was really hard to grasp myself but I put all of my energy into my therapy. Therapists Denise and Lisette were my saviours as they pushed me to my limits. They did this to boost me and small miracles took place. Also Antoinette and Anke, they were of great help. I worked on my art to keep my mind off things.

There was also Jolanda Dirken, another patient at the Trappenberg, who came to talk to me every night. Unfortunately for me this was her last week. I will really miss her!

Then there was my acquaintance Jacques Happe who turned up on Twitter and rapidly became a friend. He so kindly built me a Humus fest on Friday afternoon. Humus is a chickpea paste (middle east) that is very healthy for cancer patients. I had a lovely day with him forgetting all my sorrows and he sent me off with my ambulance at the end of the afternoon. Off I went to my home to be with Kiara for the weekend.

Waking up at home was wonderful! I have been eating very poorly but Jacques' humus kick-started me! Mom made me breakfast and lunch was the left-overs from my fest.

The point of being home was to spend some quality time with Kiara and to finish off the packing of my stuff that needs to be stored in order to be able to sell my house for a reasonable price. Melvin had already done some clearing out the week before. When you are sick, as time goes by, your home slowly changes from a home into a ware-house. As you can imagine, it means that I need to clear out a whole load of stuff. It just doesn't feel right when someone else does the clearing when you are not there. I am so greatful to Melvin (my brother) for clearing out my stuff and respecting my every wish. He came up to Hilversum especially so I could have a say about all my stuff. Mom and Dad helped him get the job done, but it was hard because all my friends (that help me so much) kept popping in. It drove me crazy after a while and I have learnt to keep the weekends that I am home for myself and Kiara as she ended up finding her peace outside. Thank you Jermaine for being her dear friend.

I am also trying to focus on a future and the best thing to focus on is my appartment building. A few weeks before I ended up in the hospital I made the papers with this shot as one of the possible future tendants of the Entrada in Hilversum. This week I received my first newsletter and they are moving along nicely with the first of the 5 flats that are being built. This is the current state of progress. They are starting to build my flat this month. I have to hurry up and choose my kitchen and bathroom which is impossible from my postion in bed. My friend Rachelle has offered to take care of all the meets and handling. So how do you explain what you want..to sum it all up we ended with a blue or brown bathroom with a touch of Mendini, totally adjusted to my handicaps of course.

Finally there is one little story I have to tell you: Because my Dr. in the Trappenberg refuses to sign the ambulance requests to go home in the weekends, the people at the ambulance department got really angry. I am talking about RAV Ambulance Voorziening Gooi- en Vechtstreek. A few people from the department, encluding Yvonne who started this all, have decided to transport me home for free every time I want to come home. This would be every two weeks or so when Kiara is home. It means that they transport me when they are off duty and the boss has given them permission to use the ambulance cars. Well, if that isn't heaven on Earth.... I don't know... I may have the worst possible disease but I sure have my little angels. Kiara was allowed to ride with us when they brought me back to the Trappenberg tonight. She got the full blown tour of the interior. After bringing me back they brought her home again!

Life changing moments

2010-08-30T06:56:00.007+02:00

I haven't been able to write the last week. So much has been going on , but I have been in too much pain. The big news is that I am back in OP pretty soon. Since last week, the pain in my arm has been fragile. I had a wonderful birthday celebrating it on Saturday with friends from the neighborhood, but that was the same day that I realised something was really wrong. I spent the weekend at home and make sure I enjoyed the Sunday as well before calling the hospital. This was supposed to be a major weekend as I turned 42 against all odds. But by Monday morning I was certain that my left arm, had given way. The gentleman doctors deliberated as to what to do. By Wednesday I was given the choice, either we replace the nuts, or we replace the whole pin. Seeing as the RFA treatment was scheduled anyway, I decided that I would go for the least invasive option, and to see how that holds. This means that within two or three weeks I will be back in the hospital for surgery. I have been in incredible pain,.... in my right arm, but also to my hip. For the first time in all these years I have cried constantly from the pain.

It's 7 AM in the morning, and I actually slept last night. Why? This is the first day of the rest of my life. It looks like things are going to change. Tomorrow is the day that my long awaited matters arrives. Technically speaking. It should mean that the pain will die down. It also looks as if today is the day that my relationship ends. Cancer is hard on partners. As my partner so prudently pointed out, he still has a life and I don't. I have news for you, cancer is even harder on people who have to bear it. I don't know what life will look like at the beginning of this day, all I can say is that it really hurts. I have become a burden. Well, that's the last thing I Wanna be so, we'll see what the day brings, perhaps I'll be lucky.

Checking out to see if I can save my old life in any possible way....

To be continued.

Progressing slowly

2010-08-19T04:44:00.017+02:00

Since the last post have been working very hard. I went from standing for the first time, to walking 50 metres. Swimming is also going well. I swim, 250 m in half an hour. Last week. I had a couple of sessions, radiation therapy. Somehow, I can't seem to get away from the hospital. Lately, I try to organise my trips to the hospital in such a way that there is always someone to accompany me.

I have become so familiar with the routine that little tricks like putting my stuff in a zip lock bag so that I don't have two worry about carrying a lot of different things, while I am being transported by ambulance. The transportation is very strenuous. Theadiation therapy was to my head and to my rib. When you arrive at the hospital. They position your body on a hard surface and by means of a CT scan, they localise the area that needs to be radiated. This is a very difficult process as precision is of extreme importance. They also use a mask to fixate your head seeing as moving a few millimetres could cause damage to healthy tissue. The mask looks pretty creepy, though it is of great importance to use it. The team at the VU hospital quite as disciplined as in the AVL hospital. They ended up positioning me four times and by the fourth time the machine crashed. This resulted me in having to lie down on a hard surface for an hour and a half last Friday. I am grateful know that Doctor Dahele is always present during my therapy. This is a criterium to be able to go forward with the therapy as far as I am concerned.
More trips to the hospital have been taking place. Yesterday I visited the neurologist and the oncological surgeon for further treatment. They have decided to go through with RFA to the Sacrum. It took a whole day to see the doctors yesterday, from 10 o'clock in the morning until six o'clock at night, when the ambulance finally came. Because I travel lying down, I am often placed in areas where the bed won't get in the way. Yesterday, they parked me in the room where the casts are moulded. Because I have to wait for the ambulance for hours, they admitted me to a one day patient department. The joke is that my view was looking out on to my last room in the hospital. Not really inspiring.

Kiara has been back from holidays with her father for almost 3 weeks now. She spent the last 2 weeks, doing all sorts of fun stuff. For instance, she went to Friesland with Aldith to see Jet. We know Jet from twitter. Kiara was able to camp their and they made boat a trip, a typical Dutch activity. Jet taught Kiara how to navigate and read maps.

Kiara's cousins also took her to the Efteling (a Dutch prizewinning theme park). As I gather, they had heaps of fun. In the meantime, life goes on, and I keep on working really hard. I keep practicing walking, swimming, and sitting.

Until I move more, daily injections are necessary to prevent Tromboses.

I Walk!

2010-08-07T00:24:00.002+02:00

04-08-2010 I walk again. Here's a vid made today!:

Moving along

2010-08-01T10:46:00.010+02:00

It's been two weeks since I talked to my doctor. An interesting fact is that my pulse has dropped from 105 - 120 to 93. The only factor which has changed is the amount of stress I was living with. I had check-ups this week with Doctor Lips, and my blood work looks great. Even my blood pressure is back to how it used to be three years ago. Looks like things are looking up for me. Besides swimming. I have proceeded on land as well. I can now sit a good 10 minutes on the edge of my bed. I have also started to stand using a lift. Once the lift has put me on my feet I am able to hold my weight, indicating that my legs are strong enough to hold me. Yesterday I tried to lift my legs are standing. Even that seems to be an option.This week. I have also started to try to get out of my bed on my own. I can almost manage it without help. I have been here now, five weeks and am growing into my routine. Steps taken seemed to be so slow. But @Tuxeltje on twitter has assured me that I am a long and very fast pace. It just doesn't seem that way, because I'm in the middle of it. let's just keep hoping for the best.They have also put me in a wheelchair during my standing sessions. I didn't sit for long, but that was the first step to some independence. I hope that the next couple of weeks I will be able to move around myself. Emca
Sport will be delivering my speedy to the Trappenberg, which is fantastic. It will mean that I can get around motorised!

The three weeks separation from Kiara are almost coming to an end. She will be home on Tuesday. Cant wait to see her as I have missed her so much. Three more days to go!

Swimming at the Trappenberg

2010-07-30T18:52:00.001+02:00

Timbuktu or Tipperary

2010-07-25T00:57:00.014+02:00

Timbuktu or Tipperary, it doesn't really matter, which I choose, what ever the case it's a long way to go. My first month in the Trappenberg has been one full of action. Before I came I felt a huge dip coming up. After a quick analysis I learnt that it was my apprehension to start at the Trappenberg . I am now well into my third year of being a patient. They call someone like me an experienced patient. Crazy really, that such terminology exists. I know the system and I know the requirements for insurance companies. I also know how that leads to bureaucracy and mostly idiocies. There were two things that worried me about my transfer from the hospital to the rehab centre. One was the fact that I knew that the hospital was going to mess up with the assignment for the Trappenberg, the other fact was that I was sure they had not communicated my arm operation. I know you are thinking: Why wouldn't they do such a thing?

Well, every day exceeding the first five days of my admission in the hospital has to be paid for by the hospital rather than by my insurance. A six-week admission is a very expensive situation for the hospital. They will therefore try to transfer you to either a nursing home or a rehabilitation centre. In the case of cancer. They tend to want to send you to nursing homes because why on earth would you want to go through a rehabilitation process if you have cancer? I refused to go to a nursing home. They can't send you there if you don't want to go. That to me is the same as giving up. It was interesting because as soon as I suggested to go home for the last week before I could start rehab, I was able to organise it within an hour. It makes you wonder why on earth the Doctor hadn't suggested this herself in the first place.

Anyway, I went home for a week. It was delightful. Mom looked after Kiara and myself, and we were able to spend some quality time together. I came to the Trappenberg four weeks ago on Thursday. I arrived here by ambulance, and I was happy to see that I had room to myself facing the beautiful gardens of the Trappenberg. Summer had kicked in and it was fabulous weather to leave your doors and windows open. Though I had a nurse that day was rather stubborn, the day started off okay, because my talk with the Doctor in charge of the Department went well. I had expected problems regarding my rehabilitation due to the last operation on my arm. I needed to rest my arm so it could heal, but I also needed my arm to mobilise. The fact that my arm had been operaterd was a surprise to the Trappenberg. Normally speaking, they would if not have admitted me within the first six weeks after my arm operation. You see, the hospital didn't mention it because they knew that the Trappenberg wouldn't take me otherwis. They felt that there was too little that I could do here. That was exactly what I was fearing before coming here. In addition to that the hospital had not informed about the fact that I had already walked after my operation. Doctors in rehabilitation centres in charge of neurological departments have learnt to motivate their patients. I was confronted with a screaming female doctor (the head of the department and not the first one I talked to), who kept telling me, “You WILL lean on your arm to mobilize”. By this time, I was furious. "I will not lean on my arm", was my response. These quotes went to and fro three times when she asked me if I would agree to lean on my arm if my orthopaedic surgeon said it was okay. I told her that it would not be okay, as he had told me not to lean on my arm. She then asked me "If he signs a paper saying that it's okay for you to lean on your arm, will you then lean on it?". I replied once more that I would not before I had spoken to him myself. I also explained that I was not planning on losing the function of my arm once again. She then came to the conclusion that rehabilitation wasn't possible for me. I told her that it was possible , as I had walked after my operation. She told me I must be wrong and must have forgotten the chronology. (You see, all neurological patients are crazy. Yes, all of them). How shallow can one be despite her maybe eight years of university?

I suggested I started with muscle strengthening exercises in bed and perhaps maybe do some swimming. I then learnt that the team of physical therapists, that they had assigned to me was the neurological team and not the team that I had trained within the past. I then suggested that they changed that, as it would take much too long to explain my complex situation and it would be a waste of time. The Dr. refused and told me to work with the neurological team. She also told me that she was giving me two weeks time to be able to sit in a wheelchair for an hour.

Taking my medical condition into consideration, this was a ridiculous and unrealistic goal. She also linked that to her decision regarding keeping me here or not. They gave me 2 weeks to prove my ability to rehabilitate. Her colleague substituted her for three weeks, while she went on holiday. This became a huge problem for me. I was angry about them wasting my time and making the wrong decisions. The anger caused me huge stress, and the general atmosphere was set.

Fifteen-l’oeuf to the Trappenberg.

I had prophesied that it would take a whole week to undo all the mistakes made. That is seven days of precious rehabilitation time for me. And that would leave me one week to prove that I had a right to be here.

On the Tuesday after my intake, I had my first physical therapy session. 23-year-old Jesse came to my room and I talked to him for about five minutes explaining that it would be a waste of time to start all over again with a new therapist, whilst they were three therapists in the building, who have known me for three years. Jesse agreed with me and told me that at least one of my therapists of the past, also worked for the neurological team. He promised me he would make arrangements for them to treat me. I also told him about the last couple of weeks in the hospital and about how the physical therapists in the hospital had neglected me the last weeks. By the time I was through Jesse was sitting on the edge of my bed, teary eyed. He couldn't believe how it was possible that they had done that to me. It just goes to illustrate that the hospital should have kept training my muscles, to avoid further deterioration.

On Thursday they had finally reached Doctor Schönhuth, my orthopaedic surgeon. He verified my story and finally, the Doctor realised that I was certainly not to lean on my arm for the next four weeks.

Fifteen-all for me.

Okay, so I gradually started to notice that the struggle with the doctors was a power game. I especially noticed it when I wanted to go home for the weekend and I needed her signature in order to organise my transportation. Even though my insurance had agreed to pay the bill. They were apprehensive to sign the request. They kept telling me it was because they were worried about receiving the bill at the Trappenberg. After explaining the procedure several times and telling her that I always receive the bill at home and send the declaration to the insurance, she still refuse to help me out.

Thirty – Fifteen for the Trappenberg.

I finally made a contract with her, which stated that if my insurance did not pay for the trip, I would pay for it myself. I had cornered the Doctor and was allowed home.

Thirty-all for me.

By the second week, my therapists started to tell me about the reactions they had received from the Doctor in a rather heated discussion. The therapists were on my side. They more or less confirmed my thoughts fears;

A) the Doctor didn't understand why someone like me with cancer, would even want to go through the rehabilitation.

B) some nurses were complaining about the work involved in looking after me.

C) the Doctor had a wrong idea about my character.

I must mention here, that nobody told me outright what was said, but when I suggested how things were according to me, they weren't able to tell me that that was not the case.

In the third week I started swimming. It was a major operation to get me to the pool, but we managed in the end. I did well, really well! Check out these vids:

(keep scrolling down after watching the vids)

As you can see, in order to get me in and out of the swimming pool, several transfers have to be made. One particular day, we were making the transfer from the showering bed to my own bed. There was any metal edge that I would have to slide over. We had solved the problem by putting a duvet on top of it the day before, which worked. When I was about to slide over, I noticed that they had put the duvet on single-ply. I mentioned that they needed to roll up the duvet instead. The nurse involved was stubborn and said that the single ply should be enough. One gets tired of having to instruct people all day, but you do it anyway. But when they are not prepared to listen, you can either cause havoc or comply. This time I was so tired of the struggle that I decided, “Hey, you know what? Why don't you just go ahead and do it your way?” I shouldn't have said that because I ended up really hurting my tailbone as I slid across. I made an huge bang and was reduced to tears. I never cry when I hurt myself. But when I do, things are really pretty bad. Anyway, the thump caused quite a bit of pain and set me back slightly. In the meantime, I have also heard that the Doctor wanted to reduce the frequency of my swimming from five times a week to once a week. How crazy is that? That the one thing that I can do is taken away from me? Last Tuesday, the Doctor had returned from a holiday. It was time for me to have a chat. I decided to grovel. I figured that grovelling might be the best way to change things around. I mention my anger, which I had when I came to the Trappenberg and that I felt that she might have gotten a wrong impression of me. I explained my anger, and had a lot to do with the weeks preceding my start at the Trappenberg. Great! This worked! Because she immediately admitted that the intake had not been as it should have been. She had rushed things and had allowed external matters to come between us. So, that is how we buried the hatchet.

Fourty-thirty for me.

And then asked her if she could give me greenlight rather than making me have two prove my ability to rehabilitate every week. I explained that that put a lot of pressure on me. She she told me I didn't have to worry about that any more and that I had shown the team that there are plenty of chances for me. I then asked if the frequency of my swimming activities could be brought back to at least three times a week. That was no problem at all. I had expected it to be a real battle. So, all things were set.

GAME- SET- MATCH. Aisha wins!

I started off the week with quite a bit of pain and Wednesday I went to the VU hospital to have a scan made of my pelvis. The scam was made to see if the embolisation had helped and also to check whether their radiation therapy was working. Yesterday morning, Doctor Lips call me in the morning and left a message saying that I should return the call. He told me that there was a fracture in my tailbone, the location was precisely the same location as where the nurse had injured me who had made my transfer. The fracture cannot be mended, because there is no material there to fasten the bone to. I will just have to hope that it will mend itself. I'm afraid that this will put me back at least another six weeks. That is, if the bone does mend itself. Let's just hope that this does not stop me walking. I cannot believe it! I was just about to start standing.

When Kiara left for her holidays, she asked me one thing: " Mom, will you promise to call me as soon as you standd next to your bed?". She called me today from the south of France. I told her about the fracture and that I told her about being able to swim six times the length of the pool on my back. Thankfully, she was impressed.

Martina Topley-Bird - 02 Too Tough To Die Live Montreux 2004
Geüpload door helaheudanlatehitehia. - Muziek video's, interviews met artiesten, concerten en meer.

When death surrounds me

2010-07-20T18:06:00.007+02:00

As I fight for my life, it becomes only more apparent that my battles are succesful, when people around me die. It is particularily painful when death catches up with those who are the most lively and the least likely to give up. In the past few months some dear friends have laid their heads to rest. In this post I would like to commemorate them.

LIESBETH

She had such a bubbly character. Always in for a laugh, but when she was serious she would touch your inner soul. Liesbeth was full of life, I will miss her dearly. Liesbeth died of Cancer.

ANNELIES

This is the only picture I could find of her. It was taken at Carnaval, and she obviously liked it. But it goes to show how she liked to party. A sweet woman with a sharp edge. Very independant but at the same time very sociable. Annelies fought for her life and leaves behind many friends that miss her a lot. Annelies died of Cancer.

ROSHAN

A brilliant little boy...started school too early simply because he was smart enough. Bam Bam, you little bundle of joy, you were taken away from us much too soon. Bam Bam died in a fire.

#Twicnic

2010-07-20T07:49:00.023+02:00

Oh my goodness, where do I start? Perhaps with a definition. A #twicnic is a Twitter picnic, an intiative of @BiekB and a production by @Aldith_Hunkar. Last week Saturday Aldith had told me not to go for lunch. I thought it was odd but obediently followed through. Suddenly I heared bustling sounds near my window and there was one specific voice that I managed to filter from the obviously present crowd. Suddenly my room was filled with friends from Twitter and my bed filled with pressies! 30 odd people had made an effort to make delicious food and drive all the way across the country just to surprise me with a beautiful picnic. It was a fabulous day, and I needn't elaborate...Here's a load of pictures which will tell the story. Needless to say, I had a wonderful day.
Beautiful People:
@BiekB, @Elmahar, @Appelejan, @Chappelman, @Biggasmurfoe, @Amoorah, @Inekris, @lexiene, @Aldith_Hunkar, @Wijmakenalles,@Johohoost, @rjvanhouten @LucyGoverts. I hope I didn't forget anyone, but these people are wonderful. Follow them on twitter.

A birthday catastrophe

2010-07-19T07:15:00.009+02:00

Yesterday was Kiara's birthday. She turned 11. We celebrated a week ago because right now she's in the south of France with her dad. I had to fight the Doc (Dr. de Boer) for 2 whole days to get her signature for the transportation home. I had requested to go home just this ones because it meant a lot to Kiara after 3 months of agony. The Doc just didn't want to get it and was worried about receiving the ambulance bill even though my insurance had told me that they would re-emburse me. To convince her I ended up making a contract with her that I would pay any non-declarable costs myself. You must know that a one way trip to my home (10 minute ride) costs €500. I think she finally got the message about how important this was to Kiara and myself.

I told Kiara about me coming home at the Twicnic (more about that in the next post). She was delighted and even came home with me in the Ambulance. How cool is that!

The next day was her birthday celebration. 7 kids were invited to come-over for cake and a surprise. The cake was to reveal the surprise. But first we had a private celebration of our own. Kiara who was wearing my hospital nightgown was spoiled rotten with pressies. She got a diving watch, a tripod and other stuff for her new hobby photography.

Straight after lunch the kids arrived. Out came the horror cake which revealed a logo (at the bottom of the cake) of the Amsterdam Dungeon. Thanks to Talitha Boogaard for making this awesome cake!

The kids were off to Amsterdam by train (with chaperones of course) after the cake. It was Orange Sunday though and we had had thunderstorms the night before. The trains weren't operating properly and after an hour's wait they got into a train filled with Orange supporters. By the time they reached Bussum (2 stops) they heard that they might not make it back that day.

My sister and Myrugia had to take a safety precaution and got the kids off the train. The dungeon was cancelled until a better day. Then Holland lost the match as well. We had watched with Aldith and Granddad and Grandma. How disappointing. Kiara went to sleep teary-eyed. Poor baby.

Hard Work

2010-07-07T18:33:00.009+02:00

Getting used to life at the Trapp. I've been so occupied, whether practically or mentally, that I haven't touched this blog for a week.

After last weeks radiation therapy I was sick for 2 days. I think the stress the heat and the therapy must have been too much. It took a couple of days before I started to eat properly again. It's funny because that really worries people. I just feel like it's time I have to allow to pass and that gradually things will get better.

Not that this scenery inspires one to eat. On the other hand I had to fight the doctor for a desperately needed clysma. Lordy Lordy!

The outdoors scenery however, is beautiful and peaceful. I get pushed outdoors in my bed whenever I ask the nurses. This old sanatorium provides the best conditions to recover. Fresh air, tranquility, and sun.

As predicted, the hassle when I came in set me back a week and by thursday the Dr. had all her answers (which I had personally given her a week before, but she couldn't believe me) and therapy started on the tuesday.

I have physical-, ergo-, psyscho- and eventually hydrotherapy. This week we focussed on sitting upright in bed, stretching my muscles, and getting rid of cramps. By Friday I was sitting on the edge of my bed. Today I sat actively for 10 minutes on the edge of my bed. It's time to change these chicken legs into thighs and calves again.

We are really close to home so Mom and Kiara come by almost every day.
Kiara generally just plays here, which makes her feel happy.
I also have many visitors here as its easier for people from my neighborhood to come here. Thanks also to my friends from Twitter for holding on. It's been a great pleasure meeting you all.

Early Bird Rises to the Occasion

2010-06-28T06:10:00.007+02:00

The last couple of days have been rather stressful.
Coming to the Trappenberg I was confronted with the bad communication skills of the VU hospital. For instance; they hadn't reported that I can not strain my arm for 4 weeks. Nor had they reported that I had already walked since the operation. Vital information like that can totally influence my treatment plan. Experience had had me worried in advance so I discussed this with the hospital. They promised to pass on the necessary info and when push came to shove, they didn't. This means that it will take at least half a week for me to correct the damage in the Trappenberg. They have put on the pressure for me here because I am difficult to treat at the moment and they want to see results in 2 weeks, if not I am out of here for the meantime. I am really pissed-off (excuse my French) about this.
On top of this, they have decided that I am now a neurological patient instead of a surgical or orthopaedic patient. This means that another team has to treat me. Therapist with whom I have worked together for 3 years and who know me really well, are no longer going to treat me. I hope to change this this coming week. The stress and frustration was on the foreground for me this weekend as I tried to fit in again. As usual, my case sticks out like a sore thumb. I am the only patient that gets moved around in their bed.

It has been wonderful to be in this environment again. (nature and fresh air). I have been lucky enough to get my own room. I am a lot closer to Hilversum which is great. (10 minutes by car).

Today I am off to the VU hospital for radiation therapy to T1 and the pubic bone. It's a way to get my mind off things I guess...because the stress of the transportation by ambulance and laying down on a hard surface in the simulator and during the radiation is much bigger than the stressing about the burocracy at the Trappenberg.

I would like to emphasize that I would be delighted if you want to visit. Do call in advance on my cellphone.

Trappenberg revisited

2010-06-24T06:26:00.004+02:00

After a reasonably peaceful week at home I am off to the Trappenberg today.
I will start my rehab there in the hope to regain the ability to stand, walk and do some daily chores independantly again. I have no idea where this will take me but I just have to assume that the sky's the limit. The trick is, how do I convince my rehabilitation doctor of this.

Visitors are allowed outside of lunch and therapy hours. The address is:

De Trappenberg Huizen
Kamer B2
Crailoseweg 116
1272 EX Huizen.

If you wish to come, please call in advance.

Home today!

2010-06-17T11:40:00.001+02:00

I get to go home for a week! I'm out of here this afternoon!

Yes, I'm alive!

2010-06-14T23:44:00.005+02:00

People Get really nervous when I don't post any news! Even when I am straight out of arm surgery. LOL. (Cannot type!) So I will do my duty and write this post even if it kills me. However, I will be brief.

Operation -succesful
Leucocytes - Up
Trombocytes - Up
HB - Up
Saturation -not quite 100%
Blood pressure - Down
Pulse - Up
Catheter -Out
Painkiller IV - Out

All in all, it means that I am doing well and will shortly be out of here. It seems like I will be moved to the Trappenberg on Monday. In the meantime I am enjoying my cards from Twitter friends, and people visiting me! The status of my house hasn't changed in the last week, so if there is anyone out there desperate to help out please speak up!

And to all my Twitter friends, guess which nurse is in the picture, That's right! It's Britney 'Rusinsky'Spears!

Surgery today

2010-06-10T05:29:00.004+02:00

Morning all! As I wake-up today I am a little apprehensive. Today is the big day as I am scheduled for the surgery of my arm. Remember the operation in february when they placed the pin in my arm? Well the pin has moved from it's position which is giving me a lot of pain due to the fact that the purpose of the pin was to fixate the arm.

Today they are going to remove the pin that failed to do the job and are going to replace it with with a new, shorter and thicker pin. I don't like the idea that they have to redo an operation but I don't have much of a choice. Hope to hear from you all after my OP.

Just a strange little anecdote from yesterday....: I went for a PET scan yesterday which involves administering radioactive glucose through an IV which is used as a mrker for the tumors. So they gave me a new needle in my wrist and I suggested they would leave it there as I was to be in for surgery today and would need a drip!. The radiologist was concerned about the needle blurring her picture and refused to leave it in there. I don't know what she was thinking! How could a tiny needle be a problem if I already have heaps of metal in my body? Anyway, I gave her her way.
The scan lasted a good 40 minutes! And when I came out I was totally suprised that my hand was asleep. How was that possible in that position? And my whole arm was wet too, I could'nt have sweated that much! Then it dawned on me and I lifted my arm from under the blanket. A blue hand soaked in blood emerged from my bed. The artery had not closed up properly and had been leaking blood for nearly an hour...What a mess, it was radioactive too, which seemed to be the radiologists main concern! What a way to start the day! -Breakfast in Amsterdam!-

I will be returning to this room after my operation! Needing all the candles and prayers in the World!

PS: Joy, I am concerned that I haven't heard from you this week. Please give me a life-sign a.s.a.p.!

Friends are so valuable!

2010-06-08T01:35:00.005+02:00

My friend Jocelyn had a dream. This is what she wrote me afterwards:

"okay now its really getting weird, had another dream just last night,, man you have got to stop starring in my dreams-- always got the lead too..

LOL this one was bizarre too, but this one was at my 20th college reunion I was using the restroom and Zara was trying to peep under the stalls and find me . and for some reason no one knew i was in there but i have no idea how zara felt that i was there...

anyway she was even smaller than now, like how she is now, just miniaturized and she was putting her head under my stall and a huge disgusting lobster/crab thing roach like creepy crawly thing crawled down the door and onto the floor and was about to bascially get on her..it was about her size exactly , it was huge!!! and orange...with claws..I was so grossed out and horrified and I couldnt get Zara to move out of the way, but then I heard you walking over ( I knew it was you by your voice, but never saw you) all calm, reach down and clamp your hand over it and say, "no you dont" , you picked it up and crushed it againt the bathroom wall by the sinks, and I am talking this thing was like a foot in diameter, it was so awful and you sorta had no fear, you just did what you had to do, it was CRAZY!! I woke up at 3am so yucked out by this creature.. and you were the one who saved the day!!!!

weird uh?"

I think Jocelyn saw me killing the cancer! Let's hope she's psychic!

Unplugged

2010-06-07T13:36:00.004+02:00

Friends visit and bring me outside!

OK, so I've been busy checking-off the list! Here goes.

Lung infection - gone
Blood in urine - gone
Low trombocyte count - gone
Low leucocyte count - gone
Anaemia - I was given a transfusion
Psychological dip - moving upwards

What's still going on?

Arm operation on Thursday.
Possible bladder infection.
Decubitis.

What do I need?

Well it would be great to have more people visit. Particularily in the mornings from 11 to 13 hours. Do come, but do call in advance!

I'm Connected!

2010-05-29T23:25:00.016+02:00

Connected, it's one of those fashionable words with a positive feel. I am experiencing another side of the word (connected). Here I am in the hospital looking back at the past week. I am really connected. I am connected to a IV containing my antibiotics, a two-way catheter which is flushing my bladder, I am connected to the TENS machine and perhaps I will receive a blood transfusion this weekend. What happened?

Two days before my radioactive iodine treatment we found blood and blood clots in my urine. Seeing as I had been using a catheter , the nurses weren't too alarmed. Blood samples were taken on a daily basis and by the time I got to the Department where my iodine treatment was to take place the doctors were alarmed. My blood-work showed that there must be an infection somewhere. Before they could treat me with the iodine they needed to make sure that it was safe to do so. They asked me if I had any idea what it could be and I told them that the only new problem was blood in my urine. When I told them about the blood clot and it's size, they figured that it couldn't be a problem in my bladder but that it must be a problem in my kidneys. To be on the safe side they had a sonogram made of my kidneys. In one of the kidneys it seemed as if they were three kidney stones. However, there was no obstruction. The doctors decided to go ahead with the treatment.

Mom came in with me to look after me as I have not mobilized yet. This meant that she was going to catch radiation, something I was not happy about but the doctors assured us that she would be fine and she chose to go ahead with it. What moms do to help the kids! I was feeling under the weather and went from bad to worse. By Sunday evening I felt so bad that the doctors came to check me out. I was administered antibiotics and diuretics as my lungs had fluid in them. Blood samples were taken, but the doctors believed that I had pneumonia. Everything else went okay with the iodine treatment and mom and I came out on Monday afternoon. I went to a brand-new department 4B , yet a new place to get accustomed to. We were off on a bad start. By day 2 it became apparent to me that no department was willing to admit me due to my radioactive treatment. It seemed as if the nurses had no idea why I was here and even the Doctor asked me why I was in her department. My patience was really tested when they forgot my antibiotics. Marcus had mentioned this to them and when I tried to reach them in the evening it took me three hours to get their attention. The, I think was a Russian one, nurse finally came to my room after three hours of waiting. I told her that I had not had my antibiotics that day. They had checked it off administration and refused to give me a daily dose. I told the nurse that I wanted her to sort out the problem and that it is not a good idea to stop taking antibiotics once one has started the cure. She told me it was my problem and my frustration and that she wanted to go home. I said, "I beg your pardon?". The nurse went ahead and repeated what she had said. I was livid! It took another nurse to calm me down. I went to sleep without the antibiotics and in the morning I addressed the matter. In the course of the week, because I had threatened to make a formal complaint, the nurse made her apologies, the nurse who had made the mistake acknowledged it and the Doctor got with my program.

So what else happened this week, medically;
· I got pneumonia.
· I got kidney stones.
· I turned anaemic.
· And my white blood cell count dropped.
To top it all off, the pin in my right arm needs to be replaced in a new to the scheduled surgery. It was not a muscle that had torn. Thanks to Doctor Lips an x-ray was made to check was wrong. Further strain could have caused a lot of damage.

I'm sure you can imagine that this week has been an all time low, emotionally and mentally. It has taken everything I've got to crawl out of his deep deep valley. For the first time in three years I wasn't sure I was going to make it. I have always been so afraid of infections. This weekend however it looks like I'm going to get over this.
Like I said earlier I had my iodine treatment last week. That means that I couldn't see Kiara for 10 days. I get to see her tomorrow, what a treat! How do you even start to tell your 10-year-old daughter the above.

Lots of suprises too though this week, my sister bringing me food, and Twitter friends helping out, like Henk who came by to bring my bed outside. The first sunlight in a month. This stuff kickstarts recovery, not to mention all the people working on my house!

Time-out

2010-05-20T22:17:00.006+02:00

Last weekend, after my shoulder muscle tore, I had no choice but to take a brake from mobilising. I used the time to become myself again. Bye-bye Dexamethasone moustache and hairy legs, and Marcus was so kind as to trim my hair!

Not only did I nurture my outer body, I also nurtured my inner body and went to the hospital chapel to attend a service. They brought me there in my bed which was interesting.

In the meantime, at home friends have been working hard , helping to fix my home. We are moving along nicely!

This week has been hectic with scans and doctor's visits. As of tomorrow I am moving to the nuclear department for my Iodine treatment. So no visitors until mid next week. Will communicate online.

Kiara's visit

2010-05-12T05:06:00.011+02:00

What can I say? ;-)...

"You are my Sunshine,

My only sunshine.

You make me happy

When skies are grey.

You'll never know, dear

How much I love you.

Please don't take my sunshine away".

Written by former State Governor Jimmie Davis and Charles Mitchell;copywright 1940 and 1977 by Peer International Corporation.
This is one oe two official songs for the State of Louisiana.

Progression each day

2010-05-11T06:34:00.011+02:00

Since my last post the emphasis has been on mobilisation.
babysteps is the answer to finding a way to walk again. Each morning I wake up with two goals (a realistic one, and one that pushes boundries). It started out with just being able to sit up in bed. Yesterday I walked 6 meters in total to the door and back. Two days ago my stitches were removed. The 27 stitches somehow seem to have constricted me a bit, because my back now seems to be more relaxed, allowing me to move better.

Up to now I have managed to reach my secondary goal each day. The great thing is that, the question of will I be able to walk again, has been answered in a time period of less than two weeks. Yes, for sure, I will be able to walk again with walking aids. I will not venture too much beyond that fact as right now the feeling in my legs is not good enough to walk safely without an aid.

From my hospital bed, my life goes on partially virtually and partially IRL.
I have started to have visitors. Preferably one by one, as I still get tired quickly. It was especially nice to see Aldith back after her trip. She brought me back some sunkist fruit...lovely!

It was quite funny because last night I was telling one of the nurses that I had lost 3 litres of blood during my operation. She told me that that was impossible as women only have 4 to 5 liters of blood. I said that that is what I remembered that the surgeon had told me. She said that it was probably more like 300cc and then suggested to look it up in the operation report. She came back looking rather flabbergasted as it was actually more than 3 litres. I was 3,5 which is 7/10 of what I have. She explained to me that the blood that is given to you is also immediately replaced by the body. This alone is an energy consuming matter. No wonder I felt much better after the second blood transfusion. At least now, my anaemia is under control.

I spend quite a lot of time on the computer. I check my mail, do my payments, check things for the new house, help coordinate the changes at my own house. I even signed the contract for my new appartment! I entertain myself on social media like Twitter and Facebook and all this is so great to keep my mind off only being or feeling ill.

The Twitter society has been especially helpful. They are around in the middel of the night when you wake up and feel bored. But they have also sent met loads of cards, visited me and even helped me fix my house. I hope that the Queens communication officers tell her that social media are called social media because they are infact SOCIAL. *I am referring to the Queen's speach in which she said that internet had an isolating effect on people.*

Being in the hospital this long in the neurology department is quite strenuous. You share the room with 3 other cases and usually they are pretty severe cases. Sleep is difficult because there is always something going on in the middel of the night. People crying it out, new people being admitted, you name it... I seem to have landed in the room with a television connection.
I have Aldith as a relative, and my two neighbors are also family to Dutch Celebs Yvette Forster and my favorite upcoming actor Chemsedinne Amar.

So you might wonder how Kiara is doing with all this going on. I don't get to see her that much because she is being kept busy. The disappointment of not going to Brazil was something I wanted to compensate. Melvin and my Aunt Tirza suggested to take Kiara and Jermaine to Center Parks. They left on Tuesday and came back on Friday. Melvin went shopping with them for mother's day. On Saturday Kiara suprised me with a visit as she wouldn't be able to see me on Sunday. She had made me a decorated CD at school with a poem and she also bought me a silver charm of a bird that looks like it is about to take off in flight. How appropriate! I miss her dearly. She is now camping with Jesse her schoolfriend and tonight, she is off to Zevenaar to stay with my parents until the end of the week. All in all she has had a lovely holiday. When the holiday is over, I hope to see her more often.

I would at this point also like to mention that my roomy of the last admittion, has also been re-admitted last night. Nicole came in with an unknown neurological complication. After many negative tests, they are opening her skull today for brainsamples. The tragedy is that she is hoping it is cancer...because that is the only way they might be able to treat her. Nicole...I am thinking of you all day. Hang in there girl.

Life in the hospital ward

2010-05-06T21:05:00.005+02:00

After the operation on my back I had come to a point that my energy level had dropped to an all time low. After having had the blood transfusion I slowly started to regain some strength. The muscles in my legs had no tonus whatsoever and that means that my journey to rehabilitate starts at the absolute beginning. I have to learn to sit, stand, and hopefully walk again.

The first 5 days it was necessary to regain energy. That is hard if you staying in medium care because it's too roudy to sleep properly. They wanted me to stablize before moving me to another room.

When I had been moved we immediately began to mobilize. Simply sitting up in bed is proving to be a problem as, now, my whole back is scaffolded from the top to the bottom. Strangely I am not in too much pain. The first exercise therfore became to practice sitting upright. I use the mechnics of the bed to get me upright. Nurses and physical therapists ask me to teach them how the bed works. LOL! The bed is also instrumental in getting me to sit on the side of the bed and therefore that became exercise #2. By the day before yesterday I tried to stand. It took two people to hold me. I had too little strength and my legs slipped away.
I knew that exercises in bed would make my muscles stronger so I had already started to exercise staticly in the other room. By this time I was doing those exercises every hour.

It payed off, because yesterday, I managed to stand with my own strength for 30 seconds and today I managed to stand up 2x and take one step. I bet that you can see an upward pattern. I have left the beginnings behind me now. I look forward to each new step that I take.

I am in a fun room with a man who had a stroke and with Gregory who I know from the reggae concerts. Imagine having this next to you...what a treat!!

In the mean time I have had mostly family visits. This up coming week it should be OK to have more people visit.

As for the next period: a new treatment plan is being made.
We have started to reduce the Dexamethasone dose. I am so happy about that because I have started to grow a moustache. Thank God for wax strips! Now lets just hope I don't lose too much strength.

Change of scenery

2010-05-03T16:43:00.004+02:00

Today things are going well. My mobilisation is off to a start. I managed to sit up on the side of my bed and to stand with help from the physical therapist. Fantastic! Task for the day completed.

I have also moved rooms and am now at 2B.28.2 with the less than fabulous view on the left.

My new journey has started.
.

Moving along

2010-05-02T04:45:00.020+02:00

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.

Can anyone help?

2010-04-30T23:03:00.005+02:00

With my admission to the hospital something went wrong with the planning of the house project. I am short of 8 hands for tomorrow, can anyone help?

New update

2010-04-30T15:31:00.004+02:00

The operation was succesful. The feeling in my legs is returning, as is the strength. The question is how much? The following days will tell.
Since this morning I am free of my IV's, drains, etc.

I am not in much pain but I am very tired. Taking it easy.

Update

2010-04-28T12:57:00.002+02:00

The plan is as follows: The tumor on TH 6 is going to be operated on to reduce the pressure on the spinal cord.This is a dangerous operation but I need to take the risks to avoid paralysis. The operation is this afternoon and can take up to 8 hours. More news in about 2 days time. I am staying at www.vumc.nl at the Neurology department. 2C.36.4. I can be contacted on my cellphone but I want to ask you to not call until after the weekend. This chick is on a mission...will check in later....

Back in the hospital

2010-04-28T09:24:00.001+02:00

The embollization was planned for this morning. I had arranged to be admitted to the hospital yesterday evening. The past two days however, my condition seemed to be deteriorating. By Tuesday morning I had lost the power in my legs aan reallized that I was back at square 1. I had the ambulance transport me to VU hospital last night...and I spent a large part of the evening in the first aid department. It is now morning, my blood has been tested and an MRI scan has been made. At this moment in time, they have decided not to embollize yet because they may need to operate my back. Amongst the possibilities is a replacement of TH6 as well as a rennovation of L3 and 4. As we speak a plan is being made. I am staying at the VU Hospital on the Neurology department. I can not be contacted today. Watch this space for more information.

Tears and disappointment

2010-04-27T04:25:00.007+02:00

Today my dream fell into pieces. As most of you know, I had a trip planned to Brazil. It has been my wish to go back there for the last 30 years. I had booked this wonderful trip en 6 of us were going to go next Monday. The doctor had already given his OK...

I was supposed to go in for the embolisation yesterday but the hospital messed up and gave me the wrong time. I did not have the operation yet and am still at home. I will be going in on Wednesday instead. I was really angry about the whole thing because it took careful planning to get everything done.

I had spent the day cancelling the original trip because it was a trip of 22 hours where I couldn't lie down. I had tried to upgrade my ticket to business class but the plane was full. After alot of hard work I found another trip with TAP airlines and we were ready to book the new trip of 12 hours with a possibility to recline. Then Lips called. I mentioned to him that I wasn't feeling as strong as I hoped to. I haven't managed to mobilise and the loss of feeling seems to be worse. Also...the Dexamethason is making me bloat. He then told me that he had talked to Dr. van Triest and that they decided that 12 hours would be much to long for me to travel. He is worried about if something happens on the way, that it would take a total of 24 hours to be back. He has given me permission to fly no longer than 4 to 5 hours.

My dream just came to a crash. Only 10 minutes ago had I told Kiara that we were definately going to Brazil. I am so disappointed....and worried that maybe in the future I won't be able to travel long distance. Travelling is my joie de vivre. I have always made it my priorty to see and discover the World.
Let's hope that this is just a temporary thing. I so hate to disappoint Kiara and Jermaine as well. Kiara took it like a champ and concentrated on her new semi-professional camera. I love her for wanting to console me. It was also her dream.

I am now going in on Wednesday for the embolisation. I will have a neurologist size me up again to see why my body is failing on me. If they say it is stable enough I will look for an alternative trip nearer by.

A short trip to the hospital

2010-04-26T02:09:00.005+02:00

It felt like the summer had started today. I was determined to sit outside at my new garden set. It was lovely to have Jacqueline, Peggy and Yinka over.
My mother is staying with us at the moment to help me out.

Since I am home I have been looking for a balance between rest and exercise. It's really hard..because I do not have much energy at all. The biggest problem is that my medication intake goes on in the night. I have to be awake at 0100 and 0400 which is causing me to not be able to sleep throughout the night. Then there's the strain on my recently operated arm....
There is a lot to take care of at the moment and I have a lot of people to see. It is therefore pretty hectic.It will take a while before I figure it out how to reach that balance.

I go back to the hospital for one evening tomorrow as they are going to embolize the pelvic bone. The last embollization seems to be a succes and that is why we are going to try it on this new area. I should be home by Tuesday.

Then there's the job on my home. Thank you all who have responded. It seems as if it is going work out. Work starts next weekend, I am most grateful for the help that has been offered.

Home

2010-04-21T04:57:00.018+02:00

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 Spee dy 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.