Matters of the head

Since Wednesday, my phone conversation with Lips has been bothering me severly. All of a sudden Lips is in a rush to get me treatment. The bump on my head has grown since Christmas. I estimate that it is now 5 x 5 cm's. Initially the Neurosurgeon had told me that that area of the brain would only affect my balance. Right now they are talking about severe damage like paralysis, motoric matters, and seizures. They want to give me radiation therapy which intuitively does not feel like the right choice. They are worried about infections if they do operate. I can't help feeling that if they had not procrastinated that long, that the option of an operation last February would have been a better choice. I have now finally gotten an appointment with Luyx. I intend to change hospitals soon, but I want to make sure that she doesn't have better ideas. Also I want to see if she can coordinate my care. Ik need someone who is on top of things and who is smart enough to look at the periferal matters. I am currently waiting to make new decisions regarding my health, as I do not plan to give up now, which seems to be the general undertone in the VU Hospital. I need people believe in my ability to recover rather than giving up on my case. More news on this matter next week.

If I had a hammer

I'd hammer in the morning

I'd hammer in the evening

All over this land

I'd hammer out danger

I'd hammer out a warning

I'd hammer out love between my brothers and my sisters

All over this land

Trini Lopez

Day 3 of the hike

It is day 3 now and I have just finished the 3rd part of the hike bringing me up to a total of 15 km already. We all know that it is much more already but this is what the officials say. It was a badly organised day and the groups started to mix which was much less fun to walk. We just stuck by our pace and gradually made it to the finish. I have noticed how people just can not get their brains around the fact that I use my wheelchair at times but that I can also do this. All I can say is that it would certainly not be wise to do this too often. As my physical therapist says, scoring at this level can be compared to top sporting. Basically, I can view my medal as an Olympic medal. I have always wanted to have the capacity to be an athleet. What a suprising way to achieve that! What I feel mostly is the acid in my thighs. That is a good sign as it means that my scaffolding in my back is holding up pretty well. Once more I have uploaded a little film for you guys. As you can see I am getting more and more tired, so I am happy to be doing the last lap tomorrow. Today was easier than yesterday. Tomorrow there will also be drum and bugle corps walking the hike. Somehow the rythm of the music makes it easier to walk. I should manage to finish all 4 laps, unless I have problems tomorrow. I will keep you posted. Incidently....sponsors are still welcome.

See you tomorrow!

Day 2 of the hike

The second day of hike has passed. I made it to the finish once again! Today was easier than yesterday as we walked a path that was much more even. I noticed that I used the muscles in my legs much more as the aches and pains are right there in my upper thighs. I walked with Mieke at the back end of Kiara's school group, ensuring that there were no escapees.

Marcus and Collin came along to support us, and Jermaine joined our school today.
Well, I do feel rather triumphant. Today was probably the hardest day for me as I went to the office to work today and had another 2 meetings afterwards, allowing me no time to rest. An order- in dinner did help. Check out this footage! And some more. If I recover well tonight I will be back on the road tomorrow. New sponsors are welcome, of course. As for a comparison to when I was healthy...I think my body feels like it is walking 20 kms each night.

While we were walking Lips called my home to let me know that they don't want to do the surgery, but prefer radiation therapy. I don't know why yet, but by now I am sure that I want a second opinion. I need to call him in the morning to find out what is going on. One thing is for sure. I am not planning anything before my trip to Jamaica.

Day 1 of the hike

Let me start by saying that I am overwhelmed by the response regarding the sponsorship. Tonight was the first part of a sequence of 4 evenings. I am therefore most pleased that my personal Via Dolorosa will pay off in the end. Thank you for your support!

The first lap is behind us and guess what I made it! It was actually very tough as I had pain varying from an aching toe to a throbbing molar. I suppose that neurologically all of this makes sense. The first 4 kms were OK but the last one was the hardest. I was happy to be able to make my way back home.

Half way through the hike we stopped for refreshments near 't bluk, just before the last part on the heath. Suddenly a thunder storm emerged and we were summoned by the Police to go back the same way we came totalling 5 kms. The mind is a wonderful instrument. Who would have thought I would be in this position a year ago! I was knackered but I already seem to be recovering. Tomorrow should be the hardest day as I will be working beforehand. Getting to and from the starting area was really easy with my scootmobile. Normally I would have had to walk quite a way to the cars. So, here's a little biligual video fragment for all you supporters out there.

By the way, if you haven't gotten around to sponsoring me, you can still do so by sending me and e-mail with your details.

'Climb every mountain, search high and low

Follow every by way, every path you know

Climb every mountain, ford every stream

Follow every rainbow, till you find your dream

A dream that will need, all the love you can give

Everyday of your life, for as long as you live

Climb every mountain, ford every stream

Follow every rainbow, till you find your dream

A dream that will need, all the love you can give

Everyday of your life, for as long as you live

Climb every mountain, ford every stream

Follow every rainbow, till you find your... dream...'

The sound of music

Dizzy by Dazzlement

It has been an eventful weekend starting on Thursday when I attended the yearly Viva la Donna day at Soul Essentials in Almere. Viva la Donna is a foundation set up for women who have or have had cancer. On this particular day it is possible to get beauty treatments for free. I enrolled in Almere as they had a whole day planned rather than just a haircut or a massage. 30 women with cancer assembled there. I even met an ex patient of Tineke, my friend there. It was very confrontational but also a good experience in the sence that it was interesting to hear that everyone runs into the incompetance of the medical world. Hello to my new readers, all you ladies with breast cancer! It was an honour to be amongst such strong women.

Once again, I was the only one with Thyroid cancer. I also believe that my cancer was the most progressed one there, though I am not sure about that. I had a hotstone massage and a facial. That was a great treat! Friday I had to go into the hospital for a scan of my head. Finally! The scan showed growth which was no suprise to me. Now all of a sudden Lips realizes that something needs to be done quickly. It aggrevated me but I kept my lips sealed....for now. I also pushed them to make an appointment for the iodine treatment which somewhere along the line had been forgotten. I am now scheduled for the 13th of June.

The scan has left me dizzy. As I made my way to Zevenaar, I reallized that I was going to be very tired in this weekend. Instead of spending my evenings going out with old friends, I stuck to my parents home and visited Tineke and Frank in the afternoon. Sunday afternoon my sister Angelique and her husband Hugo joined us. The weekend flew by. Luckily the dizziness is starting to decrease. I think it was the magnetic resonance that moved things around in my head. It's not amuzing at all. Moments like that can be frightening. This week, more news on my head, and tonight is the start of the Avondvierdaagse!

Looking for sponsors

Being slightly deranged I have set myself an almost impossible target. As I have been training to enhance my fitness, I thought it would be a real achievement if I could walk the yearly Avondvierdaagse, a 4 evening hike of 5 kms (in my case) in the county of Hilversum.
I signed on just to see how far I can reach.

I will be walking with Kiara's school and have made a deal with Marcus, that if I don't manage to finish a walk, he will come and fetch me. It is possible to just walk the walk, but it is also possible to get a medal if you finish the entire hike. I have chosen the latter. I swear that if I do win the medal, I will wear it for an entire week!

Seeing as I thought that I might not walk again only a year ago, I thought that it might be a nice idea to get sponsored. The money I earn will be donated to the Trappenberg as they taught me how to walk again.

So here is how it works: If you are willing to sponsor me, send me an
e-mail at sisterbird@planet.nl. Each evening will count as one lap. Decide what you are willing to sponsor for each lap. I will be walking 4 laps. Next week Friday I will mention what I have achieved. You will then know how much you owe me. I will send you details of my account so that you can send me your donation. As soon as I have collected all my sponsorship money I will write out a check to the Friends of the Trappenberg and personally deliver it. An account of this delivery will be made right here, so watch this space and please be generous!

Bouncin' back

I have no idea what the Docs are up to. Whatever the case, I am certainly on top of things. The requested radiation therapy seems to be working. Not only is my shoulder more mobile and less painful, but my general health seems to be boosting again. I am full of other smart ideas, which means that I have a lot of planning to do. I'm currently on a mission to beat the b**tards into shape to get them to join the programme. C'mon Doc's, what's the matter with you? This woman ain't ready to give up yet!

The day after

I went for radiation therapy yesterday. It was a busy morning as Kiara had show and tell at school. I had to make photocopies of her presentation first, then I went to hydrotherapy. Afterwards I headed to school to help Kiara out with her presentation. She scored an 8,5 out of 9 which I was rather happy about. She had put a lot of effort into it. Straight after her presentation I went home to grab my stuff for the hospital. Marcus drove me there, and I have to say that I was very nervous. Nervous, because I am not too enthusiastic about the accuracy of the department. I was therefore worried that they might make mistakes. Marcus stood by my and made sure that my grid marks corresponded to the machines. My shoulder and rib were beamed. We had ice-cream on our way back which was delicious. By the time I got home I was in pain. The pain including a stiff neck continued to increase during the evening and hit a climax at about 01.00 am. I was alone and it was easy to panic. The pain I can handle, but what it signifies is litterally killing. A time like that makes you think about your prospectives, the trouble is, I can not really do that. Lost of sleep and pushing my thoughts away has resulted in me feeling better today.

New radiation therapy scheduled

The past week has been one of those weeks with many disappointments. I won't elaborate on everything but I have selected a few highlights to illustrate where I am at. Whilst crucial decisions are to be made I can only conclude that the general attitude of my physicians, and the pace at which they work, is not sufficient to please me. I have been waiting for my scan which they will be using to make a decision about my head. They have kept me waiting 4 weeks already. On the 30th they will decide what to do. In the meantime a request has been filed for radiation therapy on my shoulder which has been very painful since the end of November. (Just to give you an indication how fast they work). I had requested to go to the AVL hospital for radiation as my experience in the VU hospital is abominable. My own radiologist in the AVL was on a sabbatical until Christmas, so Lips asked me if I did not mind having my radiation therapy in the VU hospital in order to speed things up. Tuesday I went in to get marked. Most people don't know that this happens so I thought I would share it with you. The reddish lines in the picture are henna tattoos. They show a gridline so that they know exactly which part to radiate. This is precision work. What you see here is how precise the radiologists in the VU hospital are. There are two parallel lines. One of which has a circle around it. This is to indicate which line is the main line. Right next to it, there is a line which they did not need. It was the previous main line. Well, they are off by a few centimeters. More to the left you see a faded line...well oops...that one was wrong!

They were trying to get both my right shoulder and my ribs on the left into one scan. They actually scanned me first to come to the conclusion that they could not get both parts in and had to redo it in two new scans. That is one scan too many for me (the first one). I can not get my head around mistakes like these. When I ask for scans when I am sure that something is going on in my body they refuse because of the amount of radiation, but when the f*** up nobody seems to care. Anyway my next radiation therapy is on Friday at 15.05 and I feel like I have been set back by a year emotionally. A new area has been found on my right arm. And I keep hearing the doctors tell me they don't need to scan my extremities because cancer of the Thyroid does not spread there of on your head. Well guess what?

All in all I am not too satisfied with the attitude of my doctors. More and more I feel like my recovery is such a suprise to me that apathy has hit them. I am not supposed to be walking around, let alone look so healthy. They had expected that I would be 6 ft under by now. So...why bother.

I have taken my irritation and informed my GP who by the way, confirmed that the radio therapy department is a mess in the VU hospital. I will be going back to Dr. Luykx, the oncologist in Hilversum for an assesment of my treatment. Perhaps it's time for treatment in a new hospital.

Ulrum united

Getting back into a normal modus was not quite as easy as I had expected. The week in Ulrum, Groningen was absolutely fantastic. I used to go to there once every year for a retreat. I haven't been able to do so in a long time, so I rented this house in Ulrum.

Groningen is situated in the North of Holland by the coast near the Wadden Islands. I have a particular love for this part of the country as it is the only area in the Netherlands with Big Sky. Rather than going into retreat I decided to invite the family along to enjoy my favorite part of the Netherlands with me. On our way there we stopped by Siem and Ada at their home and Vineyard. Siem and Ada are Paula's (Martin's ex) parents. They have been like grandparents to Kiara. It was a particularly sunny day, so after a wonderful lunch with club sandwiches which Ada had prepared, Siem taught Kiara how to play Jeu de Boules. He won! As they played, Ada showed me the vineyard, a massive endeavor in which they have been quite succesful. Around 15:00 we made our way to Ulrum via the Afsluitdijk. After an hour and 20 minutes we reached the house in Ulrum.

Kiara and I settled in nicely, and later that evening Marcus and Collin arrived. The next morning we went to Pieterburen. They have a seal care centre there where the sick animals are treated before being let into the wild again.

We had a good time and had a walk through the botanical gardens of the Paulus church. After lunch we did some sight-seeing. The following day we went to Insect World in Leens where we learnt all about the significance of insects. Kiara ended up petting an Iguana. Yuck!Lunch at the Insect World was fine and cheap, after which I brought Marcus and the kids to the swimming pool.

I made my way back to the house as Aldith and my parents were expected. Mom had brought Surinamees food (pom) which was delicious. After dinner Kiara and the boys went for a kart-race directly behind the house. Collin was the winner scoring with a velocity comparable to amature racers! We must find a pot of gold to get him into racing. That evening Marcus and Collin went home. Aldith had only come for the day so only Kiara and my parents and myself were left at the house. We played games until late in the evening.

The following morning we continued our sight-seeing tour. I showed my parents where I had stayed for previous visits. An old cloister in Kloosterburen which now serves as a hotel provides an excellent place to relax from the city stress. We were able to look inside as there was an exposition in the chappel. Later on we drove to Verhildersum to have a look at the old Burg. It was great being there with my parents! When they left, Kiara and I headed for the Tea Factory in Houwerzijl and had tea and scones. The Factory's tour resembled the tour that we used to make for large companies at DST where I worked years ago. I must find out if it was one of their experiences.

At night my friend Eddie who lives in Groningen visited. We ate together and caught up on news. It was good to see him again. Afterwards I packed all our stuff and put it in the car, ready to leave before 10 am. Our trip to Groningen was fabulous. On Friday Kiara and I went to Groningen city to the cartoon museum. We headed home afterwards.

I had intended to get away from my everyday preoccupation and it worked! The weather was marvelous and the company even better. Every time that I do something that I have planned and things work out...I think "Gotcha"!