Cito CITO

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?

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

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

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

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.

1. 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.
2. I have to be around when Kiara starts Highschool.Gotta see that! Who wouldn't!
   
3. I have to make it into my new home at the Entrada.

That'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

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".

Christmas Eve 2010

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

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

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

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

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.

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

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.