30 April 2010

Can anyone help?

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

New update

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

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

28 April 2010


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

Back in the hospital

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

27 April 2010

Tears and disappointment

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

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

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

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

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

26 April 2010

A short trip to the hospital

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

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

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

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

21 April 2010


What most of you want to know now, is how am I really doing at home. Yes, I have a new handicap, not being able to stand without aids, but somehow my personality seems to have grown with a mega boost. I am not especially feeling my loss at the moment as I am focussing on how to function around the obstacles that I come across. I have decided to not keep asking myself the big 'WHY ME?' question, because the answer is simple: There is no answer. Therefore, asking yourself that question can only lead to frustration, which I can do without.

I tried to use my hospital period to accept my new physical state so that once I came home, I could go straight into my rehabilitation mode.

Last week, was hectic, with my job for my client coming to an end and with being welcomed home. It was a time for family and friends which was really important for me, but it also got in the way of my energy management and worse still, it got in the way of my mobilisation. By friday, my muscle tone had deminished so much that my calf muscles looked like lambchops. I made a point to start exercising again, especially since reducing the Dexamethason is not possible yet.

I worry mostly about the tumor on TH6 because that is the one playing up.

What can I say with regards to the treatment? Well the embolization appears to be succesful, seeing as the object was to reduce pain. The pain has been reduced, and the problems caused by te tumor on S1 have not increased. So far so good.
The radiationtherapy on TH6 has also had some effect, but it is hard to say how much is the radiation therapy and how much is the Dexamethason. I have a two doctor's meetings today to decide how to move forward. More on that subject later.

In the mean time I have been busy working on solutions for the future. One major thing that needs to be taken care of is housing. As you all know, I am going to buy an appartment at the Entrada site (mine is the E2). Today we had a meeting with the Realtor. He, was fantastic, as he helped lift me and my wheelchair into the pluche portakabin and did everything to accomodate me. The flat which has been assigned to me is a huge flat on the first floor of the Solanum building which is located on a huge terrain right in front of the central station in Hilversum. For all you buddies abroad, there is a train that comes into Hilversum CS directly from Schiphol airport!
The location is only a couple of hundred yards from the town center and is adjacent to the neighborhood where I live now. I will have 3 bedrooms and 2 balconny's, one of which will hover over a large pond. The realtor is trying to make adjustments to the parking area so that I can be closest to the elevator.

I will have a parkingspace inside and a shed where I will be able to keep my Speedy Elektra which is already ready for transport.

All adjustments will be made with money from the social security.
Kiara will be living in an environment which she knows and will have acces to the whole area. She will also be able to be near her friends which she has know all her life. The appartment was way cooler than I reallized in the beginning. There are many suprises like climate control etc. etc.
It was great fun to go to the realtors with Aldith, and I managed to sit up for an hour and a half. Not bad! In the meantime life resumes as reasonably normal. These first two weeks, I have help from my mother and my brother Melvin.

Two weeks in the hospital is a long time if you have a teenager in the house. Kiara has grown so rapidly and is doing fantastically.

She has started to skate with Martin and his good friend Marco. After a weekend with him she and her bestfriend Martine went out to skate in the skatingpark nearby! They looked so cool! As ever, Kiara is doing really well in school. With the musical finished, she is struck with a little boredom. She played a small role in a dutch series called Verborgen Verhalen -episode Het Geheim van Barry (click here to watch the episode) during the Mandela touring period, but is taking up photography for the next couple of months.

As for my serious request, thank you everyone who wants to help out. I still need more help so please keep coming.

18 April 2010


Since I started this weblog in April of 2007, I have used it for the following purpose:
  • To keep you informed about what's going on.

  • To educate my readers

  • To keep in touch with you when I am physically unable to meet you.

  • As a therapeutic excercise.

Today for the first time, I want to use my blog as an announcement board.

In all these years, so many people have offered to help me. My response has always been that I promised to tell when I really need help. This is the time that I really do need your help. Many of you think that I will need help when I move to the next house, but the truth of the matter is that to move to the next house, I need to sell this house first.

In order to do that succesfully a little work needs to be done on the house. I have a friend who wants to co-ordinate the job for me..but I need serious manpower.

In May there will be a giant operation to fix the woodwork on the outside of the house, and I am also looking for someone who knows how to fix walls (stucadoor).

Please if you have time, if you have hands....help me out. Send me an e-mail at hunkar@upcmail.nl if you are able to help in the period of 3-31 May. Please mention which day you are available. If we can get this done together, my dream to move to the Entrada will come true.

Asking for help is not my stongest side. I hope that this time I succeed to get the result that I really need.

17 April 2010

Adjusting to home

On Tuesday I was set loose from the Hospital. Mom was at home with Kiara and Marcus came to pick me up. There was a load of irritation as security wouldn't let Marcus on top of the ramp to pick me up, so leaving the hospital became rather stressful. It was strange to feel how low my energy level is.

Marcus, who's normal job is to drive sick people, drove me home professionally. An ambulance couldn't have done a better job. It was lovely to be home again but this was also the moment that I was to be confronted with my new handicap.

The day before the hospital bed had come and Mom and Aldith had tried to make the place feel as comfy as possible. My transition from the hospital bed to the bed in my living room was smooth. I wasn't depressed in anyway and was able to enjoy being back with Kiara too.

That same morning, I had had physical therapy, trying to figure out if the stairs were going to work for me. They told me to not go up and down the stairs, and that that would be dangerous. For the moment I am confined to my living room. Sobeit.

The next day a lot of familiy members came to see me. We had a little party and I felt blessed to have such a wonderful family. It was very busy for me but I really enjoyed it!

On Thursday I had a major job to do...My client had a presentation on Friday and I had to help finish the website and part of the presentation to be held for the partners. I woke-up early to start writing, but my computer crashed, and internet wasn't working. Neither on Planet as on UPC. Then my body crashed. I had had to reduce the steroids that I am taking to tone down the swelling in the area where I had my radiation therapy...but the drop in medicine cause me to feel severly ill and panic. I ended up calling Dr. Hoefnagels from the neurology department and he told me that I needed to come back for a check-up. Aldith drove me there and they decided to increase my intake again and to wait for improvement first. I got home around 20.30 hrs... and still had my job to do. The computer was still giving me problems so I ran a virusscan for 2 hours and went to sleep. I woke up at 04.00 and actually managed to finish my job in time for the presentation. Many thanks for the rest of the team at Prothese Sport for helping me out and practicing patience.

Thursday was also a day that I got some stuff done. The man from the municipality came by to talk about my new home and other types of aid, and my financial advisor also came to discuss my mortgage for the Entrada.

By Friday I knew that both endeavors were working out. I will get a amount of money for moving from this home to the next. Changes that need to be made to accomodate my illness will be payed for in the new flat. And Pascal says that the mortgage will not be a problem!

I am going to start to clear out my house from everything that I do not need. Today we sold Kiara's outdoor toys. She's made quite a Buck from it!

The next thing to do is to get the house ready to sell.

13 April 2010

Last day in Hospital

I go home tomorrow. Mom and Kiara are already back at het house and Aldith and Gosia helped them today when my aid materials were delivered to the house. This morning Nicole, my roommate and I treated the Neurology department to a beautiful cake made by Talitha in honour of the fantastic care which the team has given us.

Rachelle and Myriam came to have lunch with me. That was nice!

I tried to walk the stairs again, but that was too big an effort and I ended up lying down the rest of the day to regain my energy. I closed off the day Skyping with Kiara, it felt like she was right beside me. She told me:''I think the bad cells should start to get along with the good cells. UBUNTU"
Tomorrow is a scary day...but i'm looking forward to it!

12 April 2010

Going home tomorrow

I am going home tomorrow! It is great to be going home but I will have a lot of adjusting to do. I really want to see many of you, but in the next couple of weeks I will be very busy with finding my way around my house and I will also be on a strict program at rehab in the Trappenberg. Please do not bring me any suprise visits. Call in advance and then we can make an appointment. Thank you all for your undying support!

11 April 2010

The Plan, #1 (Bone fortifier) and #4 (Embolisation)

Make sure you click on the links this time. You can watch my vids.

Thursday passed, I completed part 1 of my master plan, which was to get a bone strengthner admitted by IV. 3 years ago this
treatment nearly killed me as the decalcification of my blood (it takes the Calcium particles out of the blood and pastes them onto the bone) caused me to go into severe spasms.

I agreed to go through with this treatment under strict circumstances.
I wanted them to;

  • Check my Calcium levels in my blood in advance
  • Do this under strict supervision
  • Make sure they had an antidote ready.
They agreed and the procedure was started. I felt a little effervescent and queezy in the head.
Compared to 3 ye
ars ago, I figured that by 2200 hours I was back in the safe zone. Things went reasonably well and Friday morning I was ready for part 2 of the master plan.

Friday morning I woke up slightly tense. This was the first moment since my admition to the hospital that something was about to actively be done about the cancer itself. We were going to embolize the tumour on S1, which means that the blood supply goes to the tumour gets cut off. To do this they go into the veins in your groin and probe upwards towards your Aorta which the tumour has tapped into for its blood supply.

I was taken to the Angio room late, as I expected to be there at 1330. But I didn't get there until an hour later. Out came a radiologist that had witnessed the last time. Nice to see a familiar face! It took about an hour to get prepped for the operation.

Everything n
eeds to be sterile, and there is a lot of stuff to get ready. It's a rather bloody procedure so there are a lot of sheilds and plastic covers involved.

The first part of the
embolisation is the part where an incision is made in your groin. They then look for the vein (Iliac artery) that leads to the Aorta. Using scanning apparatus, the Doctor pushes the probe into the artery in the stomache cavity. From the Aorta many vessels branche off to tissues and organs either side of it. One of these tissues is the tumour body on S1 which is giving me my problems. Cancer tumours tap into the main bloodstream for oxygen supply. They do this by excreting chemicals which make the body build vessels towards the tumour. It is these vessels that the Doctor aims at clogging.
Using contrasting liquid they run several series to see how the veins run. This
allows the Doctor to locate the vessels feeding the tumour. In my case 3 vessels were found. The probe is then placed in the correct position. This is a tricky game much similar to gaming on a Playstation (must watch this link). Once it's in place a pap of particles is made to shoot up the vein with a pump. This particle pap makes blood coagulate, forming a plug in the vessels in which it is placed. The doctor will then release a new amount of contrasting liquid to see if the passage is really sealed. If the liquid can not be seen passing through the clogged artery, we can call it a succes.
This procedure was repeated three times during my embolisation. Three times because they only found 3 vessels going to the tumour.

When the d
octor is finished he removes the probe and closes up the Artery again. They press down really hard to make sure the artery closes properly as severe bleeding could lead to dangerous situations. A pressure dressing is then applied which needs to stay on there for the next 12 hours. I was also required to lie down flat for 2 hours first though. All in all the operation went well. Before the nurses came to get me the doctor told me that we could try to treat the other tumours in this way which was a suprise as there are still some tumours which have already have had radiation therapy, but are too large. And now...we have to see if it has any effect. The first thing that I can tell is that the pain has already decreased in the area.

Time to rest and recuperate!