Scared of falling

“It looks a long way down” says Dekomposer at Writewords.org.uk.
Yes, Bird is scared of flying high. Soaring through the sky. Letting go. Having faith. Faith in himself, mostly. Faith in life.

Bird is thinking...what if...? What if I fall? What if I cannot fly? What if I don't make it? Bird DID know how to fly in the end. He took a giant leap of faith.

Right now I don't know how to fly. My wings are clipped and I haven't a clue how much of me they will leave in tact. And that which is still present, hurts. It hurts so much that this Bird cried in public today. Bird, who always smiles. Bird who believes in her smiles.Today's pain was too much. The problem with pain is that it messes with your head. You can't think straight.
Though I lived from Tramal shot to Tramal shot, I hardly felt a relief of pain when it was time to take each next one. I sought distraction by sleeping and socializing by phone. Short distance, long distance, any distance, really. I Called all those people I should have called much earlier but just did not get around to, thus killing time until my expected guests arrived in the evening. They had spent a day at the TT race in Assen, a gift I gave them and they came to report how it had been. The sheer thought of them having the time of their lives was my little beacon that kept me on course today. Hanging in there...'til the bitter end. When I woke up at 6.30 this morning, the thought of them getting ready to go had put one of today's rare smiles on my face.
When they left, or just before to be precise, the fear hit me that I would have to suffer this pain in loneliness tonight. I panicked, I was scared. Scared of flying on my own. Scared of what the future will bring. If my pain gets worse every day, how will I make it until mid August? How will I relish my time with Kiara during the summer holidays? I tell myself the pain is a sign of my treatment working. But do I know this for sure? I do not! (I will try to find out Monday if what I am saying makes sense). What if....?

The significance of music

People ask me how I manage to stay so positive and sunny. Some of them even think that I walk around smiling for their sake. I have been known for my abundant smile since kindergarden at the Escola Americana do Récife in Brazil. Sometimes it does not reveal how I really feel.

How does it work? Well smiling does not only have to be an expression of your feelings. You can also turn it around and allow a smile to stimulate the way you feel. If I smile, I act out a state of happiness. Acting it out actually makes you feel that way. It is not my intent to cover up my feelings. It is just a way of dealing with grief, whether it is small grief or large. I have always done that and people never understood. I remember when I left the VARA my boss (Frank de Jonge) told me he felt like I had deceived him as he had no clue that I was not happy there. I wonder...should a comment like that worry me? I don't think so, as my way of dealing with the situation actually contributed to my own well-being. Am I responsible for how other's feel? I think not, as long as I am not making their life a living hell.

Call it mind tuning. It is a subject that has really sparked my interest. The way I deal with this illness, what makes me so "strong" is that I condition myself.
I more or less control my emotions. How do I do this? I make an assessment of what a healthy person ought to feel in my position, as well as I am able to.
I then add an appropriate ratio (expressed in time) to each emotion. For instance, I decide how much time I should spend grieving and how much time I should spend enjoying myself. As soon as the ratio seems acceptable to me I have a list of emotions that need to be planned in an itinerary over a certain period of time. I literally plan when I will allow which feeling to surface, also making allowances for negative feelings. By planning my feelings I achieve an optimal balance in life. There is a time for everything. This psychological tool (as I dare call it) keeps me going and adds to my QOL (quality of life).
My grief becomes manageable. What else do I want?!
I have found that music is an excellent catalyst to enable me to follow this plan. I have discovered that for instance there are CD's that promote sleep (Music to promote sleep by Sonic Aid) that to my suprise actually work! (I don't know if it is a physiological or psycological effect, but what ever works is fine with me)! Googling this subject introduces you to a whole new World. If you are interested you should check out the new links on the right.

It may please some of you that now that I have allowed myself to feel fear and anger for the passed two weeks, I am ready to get into a holiday state of mind.

Wash, wash, wash with the new Blue Cheer

Today, as I cleaned off the kitchen counter which I had left a mess on for three days (days of immense bone pain), I thought back on one of today's events. I had had a pretty good day, lunch, reconciliation and all, but once again there had been somebody who had the audacity to open their big mouth about the state of tidiness of MY home.

Such comments are always accompanied by remarks such as: "I hope you are not offended"!

In an attempt to not offend THEM I always say that I am not offended. Actually I am NOT offended but it hurts. It hurts a lot because frankly, I feel like those people -and there are plenty of them- do not exactly grasp what I am going through. I do not mean now, since I know that I have cancer, but also the previous 3 years that I have been in terrible pain and also the years since Kiara was born in which I dealt with severe depression for 3 years (I now know it was probably related to a malfunctioning thyroid gland), a divorce, single motherhood and much more.

Those of you who have known me for longer than 10 years will know that I was Mrs. Clean and Proper in person. Everything was clean, everything had its own spot and every single document was filed away neatly. My CD's were even in alphabetical order and my books were sorted by means of the Dewey decimal system. It took a lot of adapting on my end to be able to let my tendency towards Molysomophobia (fear of dirt) go and to become a far less annoying partner and mother. In the end I achieved a far less obsessive way of life and it saved me and allowed me to keep my sanity. You see, something has to give! And I might be Superwoman, but even Superwoman can not be in two places at once.

Anyway, back to those people who open their mouths: There are those who keep their mouths shut and help me. There are those who open their mouths but offer help. There are those who comment on how messy, but "gezellig" (a Dutch word for cosiness) my home is, and there are those who talk behind my back.

I can live with the first two as they seem to reallize what my predicament is. But the last two types must learn that what they do is painful, and darn-right rude! Just because I let my phobia go, it does not mean that I would not prefer to have everything in order, the way I like it and the way that suits me. It is not always pleasant to ask for help and I sure as hell do not see any of those people walking in my shoes and achieving what I have achieved for the passed 8 years. I don't understand why people think that they have the right to judge what they see in someone else's home. That is precisely what it is: someone else's home.
Even though they quickly say that they are not being judgemental, no one can convince me that they are not. I am good at reading tones of voices, body language and what more. When people mention the terrible mess there is always an underlying tone that tells me they disapprove of what they see.

My house is clean. I have to live in it and I am not complaining. I sincerely hope that then next time when people walk into others people's homes, they will refrain from imposing their personal standards on others. The truth is (as it is in any form of gossip) that you never really know what is going on and what is the cause of people's actions.

Like Dr. Luycx had said:

"The trouble with you, Aisha, is that you are too tough and you deal with pain in an incredible manner"!

She was implying that people's reactions to my situation have not been in balance with what I am experiencing. My expression of despair understates my actual state of being.
I hope that by writing this I have finally become clear about the matter.

Wash wash wash

With the new Blue Cheer

Rinse rinse rinse

'til the water goes clear.

Put it to you nose

smells like a rose.

Only the good die young

Friday night, I picked Kiara and her friend Jermaine up from the day care. As I started to prepare dinner I got a phone call from Riekje, one of my co-workers at Advisie. We have a small dinner club and even though 3 of us have moved on to other jobs we still meet at least once a year to have dinner together and sometimes an activity is part of our being together.
I thought Riekje was calling to ask how I was but she told me she had bad news. Our friend Irene Misset, who had also been one of our gang, had suddenly passed away. I was in total shock and I could tell that Riekje had a very hard time telling me. (Death being a real taboo when people talk to me). I was grateful for the courage which Riekje was able to find to tell me. Of course I promised to be at the cremation on Monday.

Well, I only just made it in time as the internet route was not precisely clear. Being sick makes you see a situation like this from a totally different perspective. I shouldn't elaborate on the details as they are really quite upsetting. Anyway, somehow or other I was once again faced with the reality that we must all seize the day as tomorrow may never come. Such clichés when you think about it...but if you stop to really think about them they are probably life's most important lessons.

Irene was only 52 and died of a heart attack. The day before she had worked late and was coaxed to go home by one of her co-workers. What a gift...those extra precious minutes at home! Only a few weeks ago Irene had sent me an e-mail to send me her support. I hadn't even gotten around to responding before I heard her news. That feels awful. Irene still had so many plans. I remember that the last time she was here she was mentioning that she would have liked to travel more but didn't have the guts. I guess that was not on her menu.

The last two weeks I have tried to think about the downside of my illness and trying to get all my paperwork done etc. I have had to face my mortality. I don't like to think of death too much...but the paperwork still needs to get done. I think I should get it all behind me...so I can go back to thinking about life.

I have a huge bump on my head that feels like there is some liquid inside. I think my treatment is working. Frankly...every extra pain I feel boosts my optimism. I do hope I am not one of the "good".

When I told Kiara that Aisha means life she said that made sense:
"No illness can get my mommy down"!

Follow the yellow brick road

Glamour and Glitz! Jacqueline, my adopted sister has been starring in the Dutch musical version of The Wiz (winner of 7 Tony Awards). After having seen her shimmer and shine in the Lion King I could not possibly miss seeing her in The Wiz in which she has a more prominent role. For a while it looked like my back was going to prevent me seeing the show. Jacqueline pleaded with her producer to arrange some tickets for myself and my family, and when we got them the whole cast put on a great show for us.

My mother, my aunt, my niece, my sister Angelique, Kiara and I, all made our way to the Beatrix theatre in Utrecht yesterday afternoon.

We were welcomed at the artists' entrance. After having had a drink we were chaperoned to our seats (row eight) to watch a wonderful show! Jacqueline was in the opening scene, as she played the role of Aunt Em. I was moved to tears as she sang her emotional song, which I knew she related to me. She was good! I don't mean just good, but REALLY good. It is amazing what people can achieve through sheer will-power and hard work!

Jacqueline is one of those people that can give this fine example and I am so proud to have her as a friend!

After the show Kiara had a meet 'n greet with the cast. We were allowed to have a look back stage too. The Lion King was overwhelming...but even with The Wiz, seeing the props up close and standing on the stage still amazes you.
The magnitude of it all is great.

We closed off the day with dinner in a second rate (not the prices, mind you) restaurant at the station.

When home we hit the sack, happy and fulfilled! I can not emphasize enough how important the arts are in our lives. Music, theatre, literature, paintings, sculptures, movies, fashion, dance....they, have always enriched my life....but right now, with my illness...the importance of it all has become much clearer to me.

Thank you Jacqui, the cast, producers, and security of The Wiz, for a wonderful day.

Nine lives for the lioness

This chick has a macho side to her! For instance the size of her car is a measure of her strenght. (On the road, that is). Only a few days ago I was talking to Marcus about the Toyota Avensis and how it would have been the car of my choice, had I not become ill and gotten an steady contract with PwC. If, if, if,....really...why I still bother I do not know, but cars are one of those things that can really uplift my mood. In the meantime I have been given a temporary lease car. A Toyota Corolla. Not quite as fancy as the Avensis, but compared to my old heap of scrap metal this is certainly a promotion on the scale of coolness!
What I was telling Marcus is that the Toyota cars offer great value for money, but that the critics keep mentioning one little problem: If you have driven a little while and let the car run stationary, the motor has a tendency to turn off when you want to take off again. Marcus didn't understand how this was possible...but I told him the critics are right, and that my motor often quits running at red lights and corners.
This afternoon I had one of those moments after I had brought Kiara away to the day care. It happened at a corner of a busy street which I wanted to turn into. The man behind me thought I was going to drive off, he looked left to check the traffic (coming from a road that was blocked! In other words there was no traffic anyway!), and when my car gave up, he ran into my rear. My fear of having an accident had become a reality. I was so happy my back was OK that I stood there grinning like an idiot. The poor man was totally flabbergasted....after filling in all the forms I told him he shouldn't be so upset. He and I were OK and there were no kids involved in the accident. He forced a smile and we said good-bye. I was worried about having an accident ...I suppose this was IT! I count my lucky stars that it wasn't a bigger impact. I appear to be OK. I think that I (Leo) should evaluate how many of the 9 lives I have already used up. Just to make sure I don't run out of them.

Wishful thinking

This morning I am off to Lips to evaluate how things have been with the Thyrax tablets (hormone replacement). I do feel a lot more energetic so I am not too concerned we won't get my cocktail right. Personally I have the impression I need a slightly higher dose as I was fine when I took 1,5 tablets. But since I went back to taking one I feel tired again. I have also lost my appetite (a strange phenomenon as I always love my food). The day before yesterday I decided to cook. (Other people have been making me dinner because working at the counter is pretty painful). After making my special spaghetti from scratch I couldn't wait to eat it. However when I tried to eat it, I thought is was horrible and left it. Kiara ate like a pig so I put it down to my taste buds not functioning properly..
Lips is the doctor that coordinates my care. I have many questions for him regarding my expectations as Wuisman has gone on his holiday without elaborating too much on the operations of my spine and skull (Wow that sounds horrible)!
Of course I have looked up information about removing the vertebra (corpectomy). There is so much documentation on this matter that I have to believe Wuisman that this a routine procedure. If i am correct, the L3 vertebra is less likely to give complications than for instance L1 or L2. I even found documentation on a similar operation done in 1968! Most people with broken vertebrae in this area seem to be paraplegic before surgery. The surgery does help them recover! This is information I have to check. I will not ask Lips about this to prevent getting partial information again...but what I do want to know is if they have more suprises in store for me. Like, what are they going to do about the tumour on my arm? I don't want small chunks of information as I go along. And what about the spots in my lungs? I want to hear all that they know or expect straight away.
All in all I hope the results from my radioactive Iodine treatment have arrived. The bottom line is that I want to know if the cancer treatment is working. Let's hope he has more news for me today!

Baby K cries on

Kiara seems to have settled in again. Somewhere along the line we had discussed sleeping in the hospital bed in the living room. Kiara mentioned that she did not want to sleep there because there were different things there than in her bedroom. Like the fire place. (In other words...the fireplace was scary). I told her there was no need to be afraid of the fire place. She was scared that robbers could enter the room through the chimney. I told her this was impossible as the hole was too small.
However Zwarte Piet (black peter) climbs down it every December to bring her presents from Saint Nicholas and to collect the goodies for his horse.
This was my chance to tell her this was all a lie. This was a tough negotiation as she really did not want to know...but I did not want to go into another Fall filled with anxiety and all her friends already know that Saint Nick is fake anyway. Every year we have six weeks of nerves and sleepless nights...I am an evil mom, I am through with it and I crushed her dream...in the middle of the summer!
24 hours later...she cried because she would have preferred not to know. I on the other hand was happy that she was worrying about child-like problems instead of my illness. Thank you Saint Nicholas...for bringing me that gift.
I distracted her with a card that Merel had sent her. (How nice is that? Someone sending her a card instead of me!) Her tears were replaced by an endeared smile. I love it!

Baby K cries

Kiara is home! She was excited to see me, happy that the 10 days had passed. She hugged me profusely. I was happy she was no longer scared to be near me. Almost immediately, she asked me if the cure had worked. I told her I did not know for sure yet because the doctor had to look at it first.
She could see that I am much more mobile than before and assured me that it had to be working because I was able to do things I wasn't able to before. I believe she was convincing herself. I got the impression she thought it was all over, so I had to break the news that there will be at least two more operations. It did not seem to bother her, I suppose she does not know what that implies.

We had dinner and she showered and washed her hair. When I dried her hair she watched television. Afterwards I let her sleep in my bed. She asked me to join her and that was when she began firing questions at me. I tried to answer them as well as I could. Then at one point she became upset. She started to cry hysterically. I asked her why she was crying...she said that the cancer was such a scary disease because you can't tell if you have it from the outside. She was suddenly not so sure if I would beat the cancer and from there on I was unable to console her. I told her it was OK to cry and held her closely. I tried to explain to her that her mother was fighting really hard. She told me I was unable to fight. Of course in her eyes all I am is a physical wreck. Eventually she moved away and asked me to get someone else to come over. It was 23.00 pm so I did not know how to arrange that. We phoned my mother instead, who read short stories to her, long distance. It helped. Kiara went to sleep at 23.40.
I am starting to get used to dealing with these outbursts. After all, don't we all cry? Don't we all get angry and scared? Kiara is a healthy girl dealing with a terrible ordeal. Luckily she is able to express her feelings. Her adult approach is what scares me.
I am so happy the school is cutting her some slack. This morning she slept in and went to school at 09.30 instead.

My mother's dear friend Carola said: "Bone-marrow is like children. It is much tougher than we think". It seems like children are like bone-marrow...

Baby K bound home

Today Kiara comes home! She has been away from home for 10 days now because her mother was radioactive. How absurd is that!?? I have been able to relax about it because I knew she was in good hands. Ineke treats her like one of her own and Kiara and Jermaine are inseperable as it is. But if I allow myself to feel what's inside, it tears me apart to know that that is the cause of our seperation.

I woke up at 7 o'clock with a whole day ahead of me. Tineke had spent the night here and was off to Amsterdam for her Toyohara course. So by 9 o'clock I was home alone.

The day ahead seemed endless as Kiara would not come home until the early evening. I had time on my hands and no particular chores to do. So...I finally got what I have been trying to find: time to think things over...to contemplate and time to hurt.

My positive attitude has a negative side...I don't create enough time to deal with pain. This is one of the reasons why I insist on having the house to myself from time to time. I am too concerned about others to be able to let my feelings run when I have others around me. I hope everyone understands. Especially those who don't want me to feel any pain at all. I need to feel the pain though...simply because what I am going through is painful! (Physically and mentally). So, I say to everyone: 'Please grant me this emotion'.

This morning my pain is about love. Love and all it's absurdities. How life is full of obstacles, sometimes preventing us to get the (mutual) love that is there in the first place. Factors like timing, distance, and other occurances seem to get in the way. The simple course of life acts like a barrier. Having time to spend with each other, whether it is with your child, a lover, a friend or family, is not always a given. Sometimes we have to make do with what life dishes up for us.

What the cancer has done for me is to expose how much my people love me. Well, I have always tried to treat people well and maybe you might think it is obvious that so many people love me. Whatever the case, I had no idea, certainly not about the magnitude of it.

This is overwhelming! I try not to let the phenomenon 'loyalty' get in the way because that would mess it all up. However, it is inevitable to be totally confused in these circumstances. Especially as - sorry, I have to say it- I have no idea how much time I have on my hands. Also, I do not want to waste any of it.

I know that what I am writing may not make sense to many of you...but I don't know how else I can express my feelings. They are so intricate. So this will have to do.

Anyway...I took my time, and turned up the volume to the Bee Gees' 'Don't wanna live inside myself' (originally released as a single October 1971. From the album "Trafalgar", released November 1971).
I bawled my eyes out. Seven softcare D'Iseree (Lidl) tissues later, I was ready to move on to something else.

Can't wait 'til Baby K comes home!

The Byronic hero

After a great night out (4 hours in upright position) with Willemijn and Karlien I took a few hours to wind down again. Hence hitting the sack at 01.00 am! I was due up at 6.30 but woke up with a shock at 7.00 am. I was late and somehow managed to get out of bed, shower, take my pills and pack my breakfast in time for my ride to the hospital. I might add that that was a painful exercise, as I get up with cramped muscles which I normally get rid of by making a slow start.
Aldith accompanied me to the hospital today and Marcus brought us there and came along. I notice he knows the routine now, which allows him to help me out with getting on and off the scanning table which is a huge relief, when in fear.
I was nervous and tired because today is actually supposed to be the day that I have some indication that the cancer treatment is working. Each scan took 10 minutes to make. I had 6 scans and six markers made. Two of the scans had me clausterphobic in no time as I was angst-driven this morning. I resembled the Byronic hero as fear drove me to experience the morning as a dreaded hell. Generally, I can handle my fate pretty well, but there are moments that fear gets a face and grows into a giant monster. This was one of those occassions. Normally, I dream away and pretend to be on a beatiful beach in the Maldives, all alone. However, I was unable to conjure-up this image this morning as my nerves got in the way. I lay as still as I could in the scan and let the tears pour down my face instead. In the background I could hear Aldith and Marcus getting along like old chums. The scans seemed to take for ever! After the scans were made the sense of relief made me cry. Marc comforted me, and looking at Aldith, she could have used some of that too.
I then went to the toilet as fast as I could. Somehow all these treatments make my kidneys and bladder work over-time. I entered the toilet only to bump into a S.O.B. that had forgotten to lock the door. There he stood, like Boo Radley, pissing into (or most likely, next to) the pot. I slammed the door yelling out that he should have locked his G.D. door. I took the booth next to his and squealed that he should not be standing but sitting down. The nuclear department warns people that they should sit down whilst urinating in order to not piss on the seat or floor. These spills contaminate other patients and their chaperones with radioactivity throughout the rest of the day. Aldith stood outside the toilets as the man's wife came to see what was going on. I had obviously really elevated my voice and caused quite consternation. Whatever the case, she gave her husband hell in response to my outrage.
I had to go back to the scanning area afterwards as I had requested them to scan my feet and legs to be sure there were no tumors (or to put it precisely....areas which had taken up iodine) there. These were the first scans of my legs so far. It was reasuring to see that the Iodine had travelled to all the expected areas. The doctor can only tell me how well the treatment has gone when the lab results of my blood, taken on the day that I went into quarantine, are combined with the scan results.
I had expected to hear if the treatment went well today but I shall have to wait a few more days, as the blood test are evaluated only once a month. Hopefully they will be ready next Wednesday when I visit Lips.
Though I am not 100% certain of the outcome, I am now able to release my insecurity. To me it looks like they got most of the cells. We weren't expecting to get them all in the first go anyway.
It is weekend now! No more visits to the hospital until wednesday.
Before I left the hospital, my radioactivity was measured. 2,2 was my reading...which is extremely low. Sunday evening Kiara is coming home!!!!!

Intense impact

Monday morning Marcus picks up my mother and I at 10.00 am to go to see Professor Wuisman, a guru on the subject of cancer in the spine. I am nervous about what I am about to hear. I am hoping that Professor Lips's slip of the tongue, might not be based on a decision already made.

Professor Wuisman is an extremely straight-forward kind of guy, his directness bordering bluntness.

At first I was trying to figure out if he had already studied the whole of my file as he did not seem to know where to acces my scans and x-rays. He instantly interrupted that train of thought when he told me he had already seen them all and studied my case. He gave it to me straight: "I am going to remove your vertebra (L3)". I was shocked. "So, the Kyphoplasty is not an option?" His response was, "Who told you that? That is nonsense"! I muttered that several specialists had told me it was an option. He was clearly irritated about people trespassing on his terrain. I felt he was not really interested about my mutual feelings. The whole coordination and specialists speaking out of turn was starting to get to me. I need a clear picture whether it is a horrific picture or not. My mind seems to work differently from most other people. Generally people can handle only so much information at a time. I on the other hand make a plan in my head for the next months using that as a tool to be able to space out the consumption of energy and positive thoughts. Now, I had already wasted some of the energy I would need for the 'oh so heavy' operation I was to face this summer.

As I had these thoughts, Professor Wuisman carried on: "We will also replace part of your skull". (The dark spot on top of my head is also a superficial metastase).
I gasped loudly. The information I was getting from this man made me feel like I was being knocked out of the fighting rink, no longer being able to fight back.
I tried to stay rational and asked all the questions that came to my mind. He answered most of them briefly, but most of his answers were followed up by, "When I get back from my holidays I will explain everything in detail". I asked when the operation was due. He made it clear he had no plans of coming back from his holidays early. I did not really see why that was relevant at all, but when I heard that he would be gone the most of the month July I was relieved that I would be getting the time I desired in order to recuperate somewhat. In turn I answered that I had no plans to have the operation in July as my daughter would be turning 8 and that August would be the earliest possible time for me to consider. (I have decided that August 15th would be a perfect date...he shall be informed about this after his holidays).
Strangely enough, this man's directness was precisely what I needed. I had become so confused by Lips' wishy-washy way of informing me. Before leaving the hospital I made sure I got myself a copy of the whole of my file (I have added some x-rays and scans to previous posts.). I went to Lips' secretary and asked for an appointment. I also requested them to have him phone me about the dose of hormones. Subsequently, I made an appointment to see the anesthesiologist about my painkillers so he can re-assess my case. I have new medicines now and I have no idea if they are interacting with each other. Also, the Arcoxia is definately addictive, so I want to know what risks there are in that field. The last thing I did was to discuss with Gerritsen's secretary, Charissa, what to do about the coordination problem. I promised to send an e-mail with all the problems I was encountering.
When Wuisman had left the room I cried out of frustration...now I felt a little like I had gained control over my own life again. At night Lips called me at home to explain how to use the hormone tablets. I told him that he had startled me by coming into my radioactive cell, and that too many specialists were saying different things to me regarding my treatment. He finally seemed to understand that I felt like he was not taking charge. I think he has stepped up to the responsibility now. We shall see...
Marcus drove us home, the rest of the day I was fragile, but my anger had subsided. I was also in great pain. This was a good sign. Maybe the cancer cells were being killed.
On Friday I will find out how well the Iodine has been taken up by the cancer cells. In other words, I will have an indication of how well I responded to the Iodine treatment. I feel tense.

Quarantine chamber - Part III

Expecting to be happy to be back home I was quite suprised to find out that my mental state was not going to allow this. I felt down (depressed would be an exageration) and could not get back into the everyday jist of things. There was so much to do, and so little to satisfy me. It felt similar to entering a supermarket in Europe or the US after having just left a third world country. The abundance makes you feel sick to the stomache. In my case, I already felt sick so that did not help much.
I also felt deflated as missing my thyroid gland was starting to take it's toll. Fortunately I was to start my medication on Sunday morning. There was one problem however: when Professor Lips had entered my room he had told me he wanted to change the dose of the Thyrax for the first couple of days. During that conversation he changed his mind 3 times and he certainly did not know what he had prescribed intitially. In all this mumbo jumbo I had already decided to go by the prescription as this was all too confusing and to call him by monday morning. Unfortunately, the sticker had fallen off the tablet jar, and I couldn't find it anywhere. I was in total ignorance about what dose to take. All of this taking place on a saturday evening. Lips had also stressed that it was important to start the medication as soon as possible. I tried to reach the hospital chemist/pharmacy but they were obviously closed. They had not mentioned where to go to in case of emergencies. The pharmacy in the VU hospital is only a month old. I decided I would phone a pharmacy in the neighborhood of the hospital instead.
Sunday morning at 8 o'clock (I was to take the tablet before my breakfast). I checked the internet for pharmacies in the vicinity. They had a combined duty roster. So I phoned them to enquire if the VU hospital pharmacy also participated in this roster...and it did! The pharmacist was able to find my file and told me which dose to take. Finally!
This whole saga annoyed me so much, because if Lips had not come to see me to give me partial information on dosage, and back operations, etc...I would not have been confused in the first place. I decided I would set all of that straight and take control of my own coordination of provided care as soon as I was back in the hospital.

I was scheduled for a meeting with Professor Wuisman (Orthopedic Surgeon) on Monday morning. Not only did I feel cranky in the weekend due to my treatment, the above mentioned mess, and my missing thyroid,
I was also apprehensive and scared to hear what the surgeon would to say. Was the removal of one of my vertebrae necessary? This would mean I would have to go through a heavy operation.

Quarantine chamber - Part II

Before the beginning of my sentence, the nurses spent about one hour trying to create the best circumstances in the room, so I would be able to lie down and not slip too much on the plastic that was spread over the floor to prevent contamination. I had a suprise visit from my cousin whom I hadn't seen in years, which was nice as Marc and my Mother's exit was a depressingly hasty. She later had flip-flops delivered to me so I would not slip on the plastic with the slippers provided by the hospital. Once again, me falling would be a disaster and that was to be prevented at all cost.
A bed made of matresses and 5 or six absorbing mats, and Scotch tape, came to our aid.
I was given clean towels and a pair of pyjama's which were basically no different from prison suits, the only difference being a lack of stripes and that they were light blue.
I had a room with a view of a building site. The men (none of them attractive) worked hard. There was a digging machine from the 'Lodder bv' company (lodderig meaning drowsiness in Dutch). How inspiring!
Before entering I was given a brochure with regulations stipulating things such as:
-you are not allowed to leave the room.
-you are not to have any visitors.
-you are not allowed to smoke.

Up to this stage I am fine. But listen to this:
-you are not allowed to take in anything with you, except a few permitted items.
-everything you do take in you must leave behind when you depart.
-your food is delivered through sluice gates.
-when you take your food out of the sluice, knock on the door to make sure no one is behind the door.
-men and women should urinate in a sitting position.
-one must always wipe oneself with toilet paper.
-faeces stuck to the inside of the toilet must be removed with the toilet brush.
-always flush the toilet twice.
-at night before going to sleep, flush the toilet once.
-always wash your hands.
-after showering dry the toilet seat.
-you must dry yourself in the shower.
-you must wear the provided slippers.
-if you throw up you may not clean up the vomit yourself.
-cover the vomit with an absorbing mat and leave it there throughout your stay......
.......and this list goes on and on and on. Apart from them stating the obvious the confinement of the room is intensified by imposing these suffocating restrictions. A similar list of do's and don'ts is given to the patient for the period after leaving the hospital.

Anyway,....what did I do all day? Thursday I spent the rest of the day talking on the phone with my friends. I even managed to find a way to make international phone calls, for which my phone was not suitable. (They say).
I lived from meal to meal, (not that they were of a standard to perk me up).
The second day I slept from meal to meal.

Strange thoughts went though my mind. For example, my teeth seemed to be brighter than normally. What if fire breaks out? (There was a major fire in the hospital a week earlier). Why was it that they served me Chilli sin carne?
What are the comparisons with prison (I finished the prison diaries whilst I was inside)? An old dead co-worker came to me in my dreams, quite vividly.
And when Professor Lips suddenly turned up inside my room at night with no warning, I was startled and couldn't help thinking of Stephen King's Misery. This was the classic location to be terrorized by sicko's as I had been told that my surveillance camera could only see me if I was on my bed.

The book 'The Kite Runner', which Hugo (my brother in law) had so kindly brought to me and my star spangled I pod gave me some comfort.
My stay was not as hard as I had imagined. Apart from feeling nauseous most of the time (I was told this never happened) I was physically OK.

Saturday morning, after a late breakfast, my Geiger-count was taken. I had a reading of 28,5. According to the rules I was to have a reading of 20 or lower. Seeing as Kiara was to be away for the next week they agreed to let me go. My mother picked me up and I was back home by noon.

What I had not expected, was that coming out would be harder than going in.The strange cornucopia of abundance in this World, seemed to have a paralysing effect on me.

Quarantine chamber - Part I

Well, I did not keep my promise to write a short novel this weekend, simply because I did not feel too hot at all! So in the next couple of days I will try to flash back on it.

Overall, I have to say it was harder coming out than going in. The horn of plenty is difficult to deal with after such sobriety.

I arrived there on Thursday morning and went straight to the lab to have my blood tested. They were looking at my general health, I suspect, and also at my calcium levels. From there we went to the Medical Center across the road where I was to be detained for the next couple of days. The nuclear specialist, Dr. Tim checked my heart, lungs, and blood pressure. Then he told me what to expect. It was possible that I could become nauseous and that the areas that are effected by the cancer could hurt a little more than before. I asked him if the sensation would resemble what I felt after the radiation therapy and he confirmed. I had dealt with that before so I knew I'd manage this time round. When the check-up was done, my mother and Marc escorted me to the 3rd floor where I was to be incarcerated for the next couple of days. It is clear that the nurses are specially trained as they were especially concerned about my feelings. Marc and my mother were running out of time as Marc had another client to transport at 12.00. Marc wore his black suit, so I asked him if he had intended to attend my cremation. It turned out that he had an important client that day. So much for dressing up especially for me.

I was shown to my room and to my horror, there stood a hospital bed, which was not what the doctor had ordered. After quickly informing I found out that they wanted to change the room while I was there to make sure I felt comfortable. Marc and my mother left, both of them resembled sick puppies (as in hush puppies, with droopy ears and reddish eyes). I was left to fend for myself. My first target was getting the bed in order, my second target was being allowed to keep my Ipod. Regulations allow you to bring things into quarantine, but everything must be left behind.

A bed was made for me by placing 3 matresses on top of each other which proved to be an excellent solution.

At 14.05 in came the doctor and an intern. They asked me if I was ready. Somehow it felt like death row. I felt impelled to ask the doctor where his mask was so I could not recognize him, so I did. He was not amused but his young blond intern cracked up. I apologized for my morbid sense of humor.

The doctor walked out and went to fetch the tablet which was incapsuled in a round lead container. He retrieved the tiny white capsule with a tube and administered it to me. Before I had swallowed it both he and the intern had fled. I wasn't able to say good-bye and reallized my confinement had commenced.

Detention dudette

Home again! My stay in the hospital passed rapidly. It very much resembled detention in prison. I can say this as I finally finished my copy of Jeffrey Archer's prison Diary part I 'Hell' and am able to compare.

I have much to tell you about it but my story is certainly worthy of description by means of nothing less than a short novel. I will therefore post more on the matter in the course of the weekend and hopefully my manuscript will be ready by Monday. I shall post the draft while it is in progression.


How did she survive? What did she do?
Did Radioactive man come to Superwoman's rescue?
Watch this space!

Killing the cancer cont'd

Fillet of a fenny snake,
In the caldron boil and bake;
Eye of newt, and toe of frog,
Wool of bat, and tongue of dog,
Adder's fork, and blind-worm's sting,
Lizard's leg, and owlet's wing,—
For a charm of powerful trouble,
Like a hell-broth boil and bubble.
Double, double toil and trouble;
Fire burn, and caldron bubble.

Macbeth- William Shakespeare

______________________________

Have my tumors grown in the meantime? I wonder.

Hillywood dinner

My co-workers do not cease to amaze me. Klaartje is leaving the company and her go-away party was transferred to Hilversum. We had dinner at a preferred location for the rich and famous. Lord knows why as I find the measure of class hard to signal. However, it is a nice location surrounded by a lot of tall green trees and it is always fun to spot radio DJ's and such-likes. De Jonge Haan, only serves pre-fabricated food, as I found out trying to order a meal without salt. Salt is a no-no as it will absorb the Iodine not leaving enough space for my cancer cells to absorb the radioactive treatment which I am to receive tomorrow. That is if the nuclear radiologist gets affirmation to go through with the treatment when he talks to the orthopedic professor (Prof. Wuisman, a new addition to my dreamteam). I am sure it will be no problem, so I am still aiming at quarantine for tomorrow. I have received the folders about my isolation cell which is really troubling when you read it and reallize that these rules apply to yourself. Actually bringing along my brand new Ipod might present me with a problem. I am determined to smuggle it in and I will let the radiation deteriorate afterwards in my attic in a plastic bag. I will tell you about what it is like in the cell after I have been there, but I assure you they have extremely strict rules. I will have a phone which covers all costs in the Netherlands. The number will be available with my parents at my home number. I can not receive any visitors until after the hospitalization. Once I am home, grown-ups can visit for short periods at a time, however, please call in advance to see if I am up to it. Children and pregnant women must steer clear of me.

Monday and tuesday I went to the hospital for scans. They once again injected me with radioactive material and made scans of my neck to be able to check the Iodine up-take. The result was that they will be able to give me the maximum dose, which is a good thing. The radiologist kept repeating that this is a treatment designed for small tumors. I, on the other hand, do have large tumors in the bone. He insists that the Iodine will go everywhere, but expects to have to repeat the treatment in six months time to get to all the cells, not excluding the posibility that I may have to go in more than 2 times before all the cancer is gone. I asked him what happens if the treatment does not work. He assured me that it should work and that I should not be concerned with it not working as the odds are small that it won't. (The odds were small that I had Thyroid cancer too...but never mind.He carefully insinuated that the odds are 95 vs 5. I guesse that is what the prognosis for chances of survival is based on. So, in other words...if this does not work, chemo is probably still an option but generally speaking....it does not give me much of a chance anyway. I have noticed how they express this...they tell me I don't want to go there in my thoughts. They don't actually tell you that the chances are huge that you will actually die then. Funny...I don't know why not...because they are still telling me the same thing in an indirect manner. Maybe it is to help them out, which would be acceptable to me.
Well, I am the type of person that likes to think ahead. I believe that is a healthy attitude. I even asked him how advanced other countries are in the World as far as these techniques are concerned. He told me most western countries should be able to perform the same treatment, but if I am to move abroad I should find out first if their diagnositics are up to knotch. I still have a dream to move abroad for a few years when Kiara finishes her primary school. India, my target land ,seems to be well equiped with 12 cancer institutes that I can find online.
A shiny perspective of the future does make you feel alot better, as it is not a secret that I will have many restrictions from now on. A life sentence for a traveller of the World is not to be able to move freely around the World.
So all in all...I'm feeling confident that I am one of the 95%!
After all...I am the patient that is still making plans for the future! That has to be worth something.

De-Grootste-Bingo-Ooit

In collaboration with the National Lotery, the VUmc has started a campagne to build a centre where cancer types can be diagnosed within 48 hours. Just a little information for my Dutch friends:

Nationale campagne voor snelle diagnose kanker van start Mies Bouwman, Ivo Niehe en Lucille Werner gaven vandaag het startsein voor ‘De-Grootste-Bingo-Ooit’, de nationale campagne van de Sponsor Loterij en VUmc Cancer Center Amsterdam. Ze deden dit samen met de voorzitter van de Sponsor Loterij, Boudewijn Poelmann en met de directeur van VUmc Cancer Center Amsterdam (VUmc CCA), Winald Gerritsen. Doel van de campagne is het bijeenbrengen van zoveel mogelijk geld voor de realisatie van een nieuwe polikliniek voor VUmc CCA. De nieuwe polikliniek zorgt voor snelle diagnose en een behandelplan binnen 48 uur. Zo kan de behandeling eerder starten en dat geeft een grotere kans om van deze ziekte te genezen. Een groot aantal mediapartners en winkels draagt de nationale actie belangeloos een warm hart toe. Talloze bedrijven stellen bovendien prijzen ter beschikking.

Contagious creepies - part 2

Well, we seem to be progressing a bit. Kiara ensures me that she knows that cancer is not contagious. She still does not want to be kissed though.
It's hard to tell if it has anything to do with my illness really, because isn't 8 the age at which kids stop wanting mummy to kiss them?
I don't know...it just happened abruptly. Frankly, I think it is maybe a bit of both. The day after she took her space, she had many questions in the evening. So many that I cut off the conversation at one point because I was afraid it would be too much to remember in one go. I promised her she could ask her other questions another time. The next day she started hugging me again. She has her own technique. She approaches me from the back so I can not reciprocate the act. Then she puts her cheek against mine and hugs my back. Well all I can say is that it works for me. It's just really hard to remember not to kiss her back. It is such a reflex! I did ask her what I should do if I want to console her as I would normally kiss her. She told me I should call someone else to do it. If there was no-one else at hand she would use the mobile phone I gave her. Actually, she got the phone so she could do do just that if she did not want to involve me.
I guess I have been relieved of that responsibility for a while and that all I can do is upgrade her cell phone credit every once in a while. It feels really strange but I respect it and am slowly coming to terms with it.

This is all very sad of course, especially for me, however it is also less worrying than a child that shows no change in behaviour. I believe that anger, resentment and distancing oneself are healthy reactions to my situation. Even grown-ups do it! So I tell myself she is dealing with things now rather than in ten years time. I guess we do pass on learned behaviour to the next generation. This was something I would have dealt with in a totally different manner when I was her age, namely.....not dealing with it at all.

Luckily she had a really nice afternoon. She spent the whole afternoon at her friend Jeroen's birthday party.

















They took a boat trip on the lakes to an island, built a fortress and had a barbeque. Kiara was the only girl there. She had a wonderful time and I had a chance to rest. I slept all afternoon...there goes my play-time! Boy did I need that!

Tonight she came to sit on my lap. She was tired and hugged me for half an hour. I am a happy mother.

The blond witch

For 20 years now I have had a very special friend; Tineke. Tineke and I met at polytechnic when we both studied physical therapy. I quit, but she carried on and expanded her knowledge in the field of biomechanics (at the University of Nijmegen), Chinese herbal therapy, and acupuncture. Her core business has now become acupuncture and she is also specializing in a Toyohara acupuncture (Japanese).

For the third time now she has come over to my home to treat me. Her main aim being to balance the different types of energy in my body. She has a holistic aproach, therefore seeing the body a symbiosis. I have to say, the effect of the treatment is most interesting. I do feel much more balanced when she is done and seem to be able to cope much better with external factors in the days following my treatment. She tries to give me a sense of well-being (I am carefully avoiding the word 'wellness' here, as this is certainly not a load of BS). With this Japanese methode, she sometimes does not even insert the needles. She achieves real results by merely holding the the needles over certain meridians. Experiencing it is truely an abracadabra trip. Aren't I lucky to have a little white witch at hand! Anyone who has problems that they don't seem to get over...I suggest you contact one of the best acupuncturists in the country.