Autumn apathy

Yes, that it correct! This is me driving to the Trappenberg for rehab. (I had my test last Friday and am allowed to drive again. Yeehaw!). The sun is shining on the Autumn leaves and the sky is blue with the crispness of an approaching winter. It was winter when I first fell ill in February and time has passed in a jiffy. It was 9 months ago that life changed for Kiara as her mother lay flat on her back and it's been more than six months that the World also turned upside down. How swiftly time passes when you are in a survival mode. Right now I have landed in nowhere land a place beyond invalidity and not quite approaching normal life. I find myself wanting to do virtually nothing. I am tired of fighting and unmotivated to pick up the tasks that await me around the house. I am partly just too tired and the other thing is that I know that the tasks have become much harder than they used to be. After a week of rest, after my last treatment, I just find it hard to pick up the pace again. A general state of apathy, also the reason for not having written much this week.

Now don't think I am giving up, because that is certainly not the case. But I do feel I deserve a small break as life still carries on. In two weeks time we will be taking a short trip to Washington DC where we will be staying with Jocelyn, Matt and Zara. Jocelyn is my long time friend since 2nd grade! It will be great to get out of our immediate environment. Hopefully Kiara will feel much better afterwards as she is having some anxiety problems right now.

Somewhere over the rainbow

Way up high,There's a land that I heard of

Once in a lullaby.
Somewhere over the rainbow

Skies are blue,And the dreams that you dare to dream

Really do come true.

Someday I'll wish upon a star

And wake up where the clouds are far

Behind me.

Where troubles melt like lemon drops

Away above the chimney tops

That's where you'll find me.

Somewhere over the rainbow

Bluebirds fly.

Birds fly over the rainbow.

Why then, oh why can't I?

If happy little bluebirds fly

Beyond the rainbow

Why, oh why can't I?

The Wizard of OZ

music by Harold Arlen and lyrics by E.Y. Harburg

Perpetuum mobile

Since April 17, the day that I heard that I have cancer, half a year has passed. I guess that calls for a celebration as I would not have made it to this day if I had not had treatment. However, it is my fatigue that prevails. Fighting this long is tiring. Going back to the Trappenberg this week after having had treatment is tough and I find myself wanting to sleep all day. Instead we went to buy shoes for Kiara today, as fall will soon turn to winter. These everyday chores are no longer done without planning. They drain energy and cause pain. Kiara was happy. As I was hoping she would go for the girly purple boots, she ended up going for the rugged boys version. Oh well, it did save me 30 Euros so who's complaining!

Tomorrow they will be coming to my home to see if I am entitled to the adjustments. I am hoping they will acknowledge the extra toilet upstairs and the wheelchair, as well as the stool for my kitchen. We will see. According to my ergo therapist the scootmobile will not be a problem. I wonder!

I also have a meeting at the hospital tomorrow. I hope the results of the scans which were made on monday (2 whole hours of scanning. So happy Marcus came along!) will have reached my doctor. We will discuss what will happen the next couple of months. On friday, I have my driving test. I am not too worried about that as my functions are fine. Driving is really not a problem. It is however a necessity.

Keep on moving, don't stop, no, keep on moving

Keep on moving, keep on moving, don't stop, no

Keep on moving

I know the time, time today, walking alone in my own way

Extreme cold and rainy day, friends and I have fun along the way

Yes we do! I hide myself from no one

I know the time will really come when you'll be in my life

My life always, yellow is the colour of sunrays
Keep on moving, don't stop like the hands of time

Click clock, find your own way to stay, the time will come one day

Yes Keep on moving,..

Soul II Soul

Capoeirista Carinoza

Kiara strikes again as it is her second year running that she practices Capoeira, a Brazilian martial art. Today was D-day as it was time for her examination again after another year of lessons by Urso.

At the rythmic beat of drums and other percussion instruments, adorned with the chant of 100 odd pupils of the Balança school Kiara did her thing (click to watch the footage) and percevered. She is now the proud owner of her yellow and white cord.

Aldith drove us there. We were late because of the Amsterdam Marathon, what a place to have a Marathon! It caused a major traffic jam. Perhaps her uncle Hugo was running...?

Happy to have made it there in the end!

I on the other hand am so tired. After a week of rest it was very tiring . This week I go back to the Trappenberg and I have a few hospital visits too. I don't look forward to the hard work again. Pfff, it's a long haul!
By the way, it was me attempting to practice Capoeira that exposed my cancer in the first place. I broke my back. The beginning of this episode. Little did I know.

Carinoza, Kiara's capoeira nick name.

Curiosity killed the cat

With Kiara being away for a week and myself still being slightly radioactive, I have spent a reasonably uneventful week at home. Apart from two days of home improvement, I mostly took to sleeping in, hanging on the couch, watching TV and referring from actually cooking. After the treatment I feel no desire to eat hot meals. I have felt OK most of this week, until this morning.

Yesterday evening I watched a new (and despicable) show called Babyboom (for the Rastafarian's amongst yourselves ...that sounds pretty much like Babylon) on Dutch commercial television where 100 couples were followed during their quest to get pregnant and have a child. I could not imagine anyone sharing this with the rest of the country and was totally flabbergasted by the time I went to sleep. The result being that I found myself in a dream in which I was competing to be the best survivor of Cancer world wide. When I woke up I had reached the 84th position which was troubling to me, as 84 might rank high on the World list, but competitive as I am it was still a long-shot for me to win the game. Crazy how the mind works, but I got up flustered and glowing only to find that I had a full bladder which needed a release as soon as possible. I made 3 trips down the stairs between 5.30 and 7.00 o'clock and as if my bladder had to make way for my intestines, a bowel movement took place immediately after which had me running another 2 times. It was diarrhoea a symptom of my treatment which is now precisely one week ago. A nauseous feeling in the stomache accompanies these symptoms, a condition I just have to go through. Compared to how fit I felt at the beginning of the week, today seems quiet the opposite as I feel a great lack of energy. Hopefully by the beginning of next week I will be in form again to continue my rehab.
It has been nice not living on anyone else's schedule for a few days, as I have been doing precisely that since July 2nd when I was admitted. It is easier for me to be at home alone than it used to be, I think I am more satisfied about what I have rather than worry about what I don't have. A lot of good can come out of being desperately ill.

Home improvement

Today, I had my first sleep-in in jonks. Then around one o'clock my friend Hugo came to visit. It was a lazy afternoon chit-chatting away on the sofa about life matters, from one survivor to another. We chatted about life before and after a life-threatening illness and many other interesting matters. The laziness came to a hault when we, or rather Hugo, embarked on a home improvement project. The project was so huge that I cannot get it in one picture. My CD cabinets have been assembled thus almost completing my sitting area. I will be living like a pasha next.

As you can see, Hugo worked profusely to get the job done. I tried to help by preparing the windows with some new-fangled film which was way too expensive. The idea being that I can no longer see the zillion colours of the backs of my cd's. I am really satisfied at the end result but horrified at the amount of film I managed to waste. How frustrating it is when you can't do a project by yourself and when you get the help necessary, you cannot concentrate sufficiently to get the part done which you ARE able to do. I think I have to conclude that perhaps I was being way too perfectionistic, because after I messed up all of the film, I ended up using the first cuts after all. They looked fine in the cabinets.

Anyway, as I do project by project, my house that is bursting at the seams, is gradually being pimped to be a palace for Her Majesty Bird, the lady of the manor. Tomorrow my friend Nanette is coming to help me move things up to my spare room again, so I can have my office there as I always used to and reclaim my dining room table for entertainment and meals. It is not easy being dependant on others. There are so many projects left, like project CD transfer, project attic enablement, project shifting autumn leaves, project filing cabinets, project paint job....eventually I will get there.

Gee, but it's great to be back home

Home is where I want to be

I've been on the road so long my friend

And if you came along

I know you couldn't disagree

Simon and Garfunkel

Confinement ceased

When Sunday morning came to an end the phone rang in my sweet radioactive suite. It was gone 11 and the nurse said that it was time to measure my radioactivity. Last time they let me go at 24 (on the Geiger counter) when the should have waited for 22 I seem to recall, but seeing as I was admitted later than the last time I had expected to be let free no earlier than 15.30. To my suprise she measured a radioactivity of 11. I was allowed to go home early which kinda messed up my transportation, but after a few alterations I was on my way home, on probably one of the last sunny sundays this year. My stay was different from the last time. The pressure to get over the cancer was much higher than now, but on the other hand, I can certainly notice how much healthier I am now. This time around I slept on a bed. The mattress was too thin though I was in pain on Friday night. So, on saturday I requested them to put an extra one in the sluice. I managed to move it myself. Go, power chick!
This time around I was able to bear television which made a huge difference, as time passed by much faster. On the 18th I will have my next scan to see how the uptake was. And in approximatly 6 weeks time we will check the Thyroglobulin. It feels great to be back home.

Contact information

My telephone number during my confinement is:

+31 (0)20 7955192

I'll be back amongst the general population by Monday!

Confinement anxiety

I am feeling some anxiety as I prepare to enter my 3x4 meter lead compartment. It makes you feel like a convict, but only better as they still get aired and emersed in whatever day light there is. I picked Kiara up after Rehab so we could have a nice and relaxing afternoon together.
For some reason or other it feels like I am going in for ever! So I have been trying to arrange things at home so I can actually be gone for a while, as if I was going on a holiday. The truth is that I will only be gone 3 days, but it feels endless. Ineke stopped by this afternoon. That's good, at least I am not turning entirely unsociable and a little distraction wasn't bad. The evening was quiet as Kiara played a bit on the sofa. Luckily my phone followed suit and I mostly got calls from my family. I needed the rest to ensure that I packed properly for myself and also for Kiara who will be staying at her father's this coming week. Off to bed now, so I can get up early to get ready for confinement.

Killing the cancer part III

Superwoman strikes again this weekend. She will be killing the cancer with a radioactive capsule once more. For those of you who missed part I, Thyroid cancer is treated with radioactive Iodine 131, a tiny white capsule which is swallowed. The Iodine then makes its way through my body through my bloodstream towards the remaining cancer cells which are all, technically speaking, thyroid cells. As thyroid cells have the characteristic of absorbing Iodine, thyroid treatment is very precise and on the (cancerogenous) spot. I will therefore be radioactive for the next months. Three days of which I am a danger to grown-ups, and 10 days to children or pregnant women. Kiara will be staying at her father's this coming week which is a normal arrangement for her as she would normally be spending her mid-term with him anyway.
I will be admitted at 10.00 o'clock to my isolation cell where I will have full access to the phone. (A real life-saver!)

The object of this exercise is to kill as many cancer cells as possible. This is measured by testing for the Thyroglobulin marker in my blood. On Friday morning my blood will be tested, and this test will also be repeated when I go back for my scan on the 18th. Unfortunately, the results of the bloodtest can take up to 4 weeks. We will therefore, have to wait to know how well things went. Until Friday I am on a low Iodine diet, meaning that no foods from the sea or salt are to be eaten. If you are trying to make quick meals this can be quite difficult as so many ingredients contain salt. The next 2 days I shall be preparing for my admition. The second time round is harder. As time moves on you get tired of treatment and maybe also used to living with cancer.

My phone number will be published on here this weekend.

RPB

I'm still at the Trappenberg, though I have to admit that this is a picture from before. On a weekly basis I go there 3 days a week to continue my rehabilitation. It is tough but I could get used to a life like this, athletes have it great as each progress you make feels like something to party for! I had my RPB -Revalidatieplan bespreking (a evaluation for my Rehab-plan) yesterday. The goal is to see if we are on track and to see how well I am progressing. They are very satisfied with my progress, and then comes the question of how much longer they will have me.
It is of utmost importance to me to be able to continue at the Trappenberg for as long as possible. As I am a prize patient, I feel I deserve prize treatment, as long as I am still improving.
The doctor tried to find out what I was thinking in matter of the duration of my stay, I kept my lips sealed as to not give anything away, because I was hoping that he would suggest a longer period than I had in mind. He knew which game I was playing and had to cough up a suggestion. I have been given 5 to 6 more weeks of rehab before re-evaluating my position. Every day of therapy is a gift, as it sure makes a huge difference whether a specialized team is treating you rather than a few individual therapists, which would be the next step. Today I have a tough day ahead filled with physical-, activity-, and hydrotherapy as well as fitness and sports. Luckily I have a day off tomorrow.

Golden goals

I did it again! This weekend we celebrated my parent's 50th anniversary. Yes, 50 years it is, and still happy! A fine example to anyone. The celebration was in the small town of Doesburg, near the German border at de Ijsselhoeve. It is really quite pitureske and we made our way to Landgoed Avegoor in the early afternoon of Saturday.

I had booked a very classy hotel in order to guarantee my rest, if necessary. Armed with crutches and a wheelchair we arrived at our destination, where the service was so fine that they even came to greet me at the car. After checking in I stretched out on my bed for an hour and a half before getting dressed.
Doesburg was only 8 KMs from our hotel. At 3 we made our way to a the very relaxing party. I did well, physically. It is hard to sit there and receive everybody's sympathy, though it is great that people made an effort to speak to me personally. However hard it may be to talk openly about the C-word, somehow it deminishes it's distructive power. Sorta-like sayin'; "Who's afraid of cancer?".

If enough people talk about it like it's just an everyday thing, then maybe it will feel really vulnerable and go away.
Anyway I am very happy to have made it this far. To actually be there and participate fully this weekend. The hotel offered an environment for walks, facilities for swimming etc.. So the next day after a very nice breakfast, everybody did their thing as I once again rested. Kiara even went swimming twice!
On the way back, we visited my old friend Heym and got home at seven. Kiara was fast asleep by seven-thirty, ready to start the last week before my Iodine treatment. I am not looking forward to quarantine as I have noticed that many things at the hospital have caused psychological traumas. Going there brings back awful memories. Maybe if I go there often enough it will go away...just like the cancer.










Landgoed Avegoor .............................De IJsselhoeve

Parking problems

I have been informing you about the many peaks in my life, recently. Then there's the more practical side, like getting an invalid parking pass. This is quite essential in order to increase my
QoL, as much energy is lost in walking to and from my car, when I finally manage to get out. Actually, the truth is that if I cannot park close by, some social events will not be accessible to me in the near future.

So, I applied for a pass which for some reason takes weeks and weeks before you are called in for a doctor's test.
The rules in the papers for the request from my own municipality stipulate that the applicant must not be able to walk 100 meters without aid. I geared my interview at those specifications, as some days I can walk the 100 meters and others I can not. After telling him what my reason for the application was, he told me he would advise the municipality to give me the card but that I should keep in mind that the Dutch law stipulates that I can't walk 100 meters with aid.

So why is there a discrepantie in the rules? This is so typical! I am not sure what they will decide...but whatever the case, I can't imagine anyone paying 90 euros for an application just for the sake of it! I can now go ahead and wait another 8 weeks (to the max) for an answer. Why is it that a simple administrative task takes 8 weeks to complete? No wonder all workers in this country are stressed out. I would be too if I back-lagged in my work by 2 months.

Still a friend for War Child

We did it! We actually did it! Kiara and I went to the Friends for War Child concert. Another one of those very important goals to achieve. Only a year ago I had just left War Child (my most significant job) to start a PwC, when Kiara, Jacqueline and I went to the Friends for War Child concert. I was totally oblivious to what I was carrying around with me at the time, but I did already know something serious was going on as I had been diagnosed with Lyme disease!
Getting there tonight was a major achievement as I had to drive there and back myself, in Holland's worst economical fiend, the traffic jam. A huge task for me but I was decided...this was another one of those mountains to climb.

Over the hill, was an abundance of peace, love and happiness, as War Child once again performed one of it's luminous tricks to raise the very much needed funds for the future. A future in which hopefully, there will be less wars, and juvenile victims of this distruction that humans tend to inflict on each other.

There has not been another job where I was as passionate about my work. And someday I hope to return.

The evening was packed with
A-grade artists. Each and everyone of them there, free of charge to support War Child's fundraising concert. The line-up consisted of Holland's finest, amongst whom, Marco Borsato who is the ambassador to the organisation.

Being there felt good. As the Dutch would say; it felt like a warm tub. And it was great to see my old co-workers and feel as if no time at all had passed. For Kiara it is the only occasion for which I allow her up this late on a week day. It is not just fun, there is also a lesson to be learnt.

Sometimes I feel like I went through a horrible dream, as if nothing had happened at all. It has made me more emotional and I found myself releasing tears, perpetually this evening at the beauty of what life can offer us if only we choose to take it.

You could choose to support this organisation as your money will be well spent. This past year 83% of the donations actually reached the projects themselves.

Go, friends at War Child! Keep up the excellent work!

After all was said and done we headed back home. This time the trip went as planned and we made it home in just under an hour. I have succeded to pull this off. Thanks to Sonja, Ahoy, Pien, Ingrid, Iris, Willemijn, Stef and a few more WC volunteers for helping me bridge the gaps tonight. It would have been a hellish task to have fun tonight without you.