Back to the OR

A year ago Marcus and I promised each other that we would be spending the next Christmas together. And that is precisely what we did. Christmas was spent in 4 households. Mine, Marcus', his mother's home and my parents. It was the first time that the kids spent a whole week together. Unlike in other similar cases things went over really smoothly. Last Friday Kiara and I went to Almere where the kids went skating on Saturday while I finished my Christmas shopping. The tree that we had at Marcus' house was donated to Kiara. Decorated and all it was dropped of by an anonymous organisation. What I know is that the organisation was donating 'dream trees' to children with cancer. They had some trees left over and one of the mothers at Kiara's school had tipped them that Kiara deserved one too.
We transported the tree to Marcus' house which saved us having to decorate a second tree. On Christmas eve we had dinner and went to church in Amsterdam afterwards. When we got home we opened our presents. It was late, the kids went to bed without being prompted. The next morning we had brunch together. By the time we were done I was so tired that I went to sleep for a few hours. We spent Christmas evening and Marcus's mother's home and had a lovely dinner. On the second day of Christmas we celebrated at my parents home. We had a wonderful time. During the course of this week, however, there is one thing that kept going through my mind.









My next surgery. It is scarier each time. I will be staying at the VU hospital for the operation. A pin is being inserted in my left arm (Humerus). This operation will be much like the operation on my leg. The doctor (Dr. De Gast) expects me to leave the hospital in 2 days time. I am expecting a stay of 5 days approximately. My condition is different from that of other people undergoing such an operation. Anyway my phone number will be posted here. You can always try to phone my cellphone. Before my operation I have a radio therapy session of my pelvic bone. I am hoping that I am not the first to be operated on on Tuesday. That way I will be able to sleep in my own bed tomorrow. I will probably be in the hospital on New Year's eve so I wish you all the best of years and will write again when I leave the hospital. Visiting hours at the VU hospital are from 11.00- 13.00 and from 16.00 -19.30.

Well I guess I'm not!

A visit to Lips revealed that my premonitions were correct. The pain in my upper arm does indicate that the bone is so brittle that it can break very easily. Do you remember that I went to the first aid department on November 28 with precisely that question? "Please check my arm because it is about to break". They told me I was fine. I didn't even have to make a new appointment with my doctors. I then spent 7 weeks in extreem pain. Kiara has done a wonderful job documenting this periond of time in photographs. I spent a great deal of time om my sofa, unable to move my arms. I did my shopping, drove my car etc. not knowing that each load could have been the cause of losing my arm. Shortly after my visit to the first aid department I had a meeting with Professor Lips. I requested new scans of my shoulders which he luckily made. Last week while I was there for my follow-up meeting I heard that I had to have an urgent meeting with the Orthopedic Surgeon because I might need to have an operation. Last monday my mother and I headed to the hospital. I was extremely tense because up to now I have been so right about everything I felt. I decided that I would make a problem at the reception if it turned out that my meeting wasn't with Jiya. And low and behold...when I got there the receptionist told me that I had a meeting with another specialist. I blew up for the first time in almost 2 years, totally pissed off at their nonchalence. My tantrum, loud enough for other patients to hear, brought results.

Suddenly everybody was geared at helping me. My frustration was validated and the doctor that saw me at the first aid was tracked down and repremanded.

At the end of the day, when I went home I knew that I have to go back into surgery.

I need a pin in my upper arm. The situation is so urgent that they wanted to operate the next day. I told them that I wasn't going to do this before Christmas. So, I will be going in on the 30th of December. It feels like I am back where I started. The result of these meetings is that it has renewed our anxiety concerning the status of my health. Why did this patch grow so fast?
Why does my whole body hurt? Are my organs still OK? Am I moving towards a new fase? Where will things end up with regards to my mobility? I am starting to become the bionic woman. My mother and Marcus have been here with me, but the stress has hit them too.

Here's a picture which illustrates how they are canalizing their frustration by making beanies.

Well, I am going to celebrate Christmas first. Last night Kiara had her Christmas celebration with school. Paula and Bo came by and we had goodies afterwards. The next couple of days, Kiara and I will be staying at Marc's place and we will be going to our parents to celebrate. Kiara will be going to her dad's place afterwards, and I will be in the hospital on new years eve.

I am scared about the pain, my mobility but most of all, I am scared about complications. I hope that in January, I will be able to live to the fullest again.
And I really hope that I will still be able to pick up my art again.

I'm OK I guess

The surgery of my hand seems to have went OK. The pain in my shoulders is much worse, so this is easy to deal with. I do notice that the effect of the operation is getting tougher as I move along. I have seen enough hospitals, really. Marcus spent the whole weekend with me as well as Collin and Sidney. It's so nice to have someone to help you out when you feel this vulnerable. Tonight Marcus and I are off to do something really nice! We are going to see Dionne Warwick at the RAI in Amsterdam. I loved her singing since I was about 10 years old.

Speaking of all those years that have passed, in the last couple of months I have found many friends from the past on the internet, like my friends from ACST, in Tunis and from Rosemead in Littlehampton. It has been a wonderful source of happiness for me to find all those lost friends again. Thank goodness for the internet! (FB, Hyves, and Friends Reunited). Welcome to my weblog and I hope to be able to meet you all in the time to come!

Tomorrow I am back in the hospital to get an assesment on my humerus.
I refuse to go back into surgery before the end of the year, so I wonder what Jiya has to say.

Surgery again

The Morbus de Quervain is being treated. This time I get to go to the hospital in Hilversum. I haven't been on here much lately because I simply haven't been able to work on the computer due to pain. So here's a short note to inform you what I am doing.
The scare I had after the last treatment which had me going to the first aid department the day after my last treatment, was not a scare. I have to deal with the situation again that after telling people what is wrong and seeing the right doctors, now suddenly after 7 weeks they are rushing me to the specialist because, OMG....you might end up breaking your arm! Anyway, the tumor in the arm has caused the bone to become thin and brittle. That is precisely what I told them 7 weeks ago. I literally said that I was scared that my bone was going to break and explained why I thought so. They checked and told me everything was OK. Nobody said that I needed to go back to my specialist. I asked for the scans myself, and now suddenly they want to rush me in there and have made it is possible to see Dr. Jiya within 4 days (including the weekend). So, monday I will be going in to find out what needs to be done about the Humerus. For now...I will concentrate on today's surgery of the tendon of my thumb. I can deal with that, there is no cancer involved!

Never ending story

Waiting to recover from the last treatment feels like a never ending story. It is not the pain that I cannot handel, it is the fact that the pain (and perhaps a small portion the fear) are immobilizing me. I have been stuck in this house for approximately a month now with the exception of a few trips to the shops which are more or less impossible. The fact that I cannot do anything is infuriating. In the meantime, I am making my trips to and from the hospital etc.. There are a few developments that I have not yet mentioned. After a check-up at the Neurologist for my eye it has been decided that we need to eliminate a few things. Monday morning I will go to the VUMC for the first half of my neurological tests. This weekend I also made a trip to the hospital in Hilversum regarding my tendonitis. It was really refreshing to encounter a doctor who actually knew what he had to do. He has scheduled me for surgery for December 12th which is really very fast! He will be solving my problem with Morbus de Quervain which I believe started by compensating for the loss of function in my right arm. It will hurt a while but I will be happy to have one less problematical area, especially since I need that with the pain in my shoulders.. All in all, there is a lot going on in the medical area. It takes some adjustment after a month of not hurting. However, I must say that the pain is slowly but gradually deminishing. I am happy about that as I this probably means that the pain IS related to the last treatment.

Winter is setting in. I remember that when I was a kid I used to love the snow. Sunday night is snowed so much that I wasn't able to drive myself. This is my house! Luckily it all melted. Slippery weather means that I can't get out. One slip could cause me to loose my arms. Strange your reality can change that much!

Do I ever get bored?...

I get asked this question quite frequently and it always suprises me. People wonder if I get bored because I am not working, or at least not anything close to my usual capacity.

Well, these past two and a half weeks have been a real test as the pain that I have had to deal with was so tremendous that even I resorted to Tramal (Painkiller) and many hours in a horizontal position. As it is -that is if the specialists are getting their facts right- the increased absorbtion of Iodine is doing its job, which is basically killing as many cancer cells as possible. This causes inflamation and a build up of fluids in all the (28 odd) areas where there are tumors in my body. The high radioactive load left me unable to move my arms (shoulders) the past 3 weeks and I have been getting power bolts going down from my lower back to my 3rd and 4th left toe. This was really a period in which boredom could have struck as all I could do was sit and/or sleep. As you noticed I wasn't even able to get online, so the only distraction was television. I still wasn't bored. What people don't realize is how much time and effort actually goes into getting better. All my daily tasks took at least twice as long. I am also at the hospital on an average of one to two times a week. Usually this takes at least 4 hours, that is encluding my trip to Amsterdam, sometime even longer.

Taking my medicine in the morning takes me an hour before I can have breakfast. Multiply that by 7 and that is almost a working day that I lose out on. Then there are the trips to my physical therapy and hydrotherapy which take up another 3 hours a week if I am managing to go.

I also have Kiara to take care of and a household to run. Somewhere in the midst of all of those activities I try to spend some quality time with Marcus as well, not to mention all my dear friends and family who keep me on the ball. I really cannot comprehend how anyone could think that I am bored. I don't need to get a life! Thank goodness, I have one!

The past is history. The future is a mystery. The only time we really have is now - just this moment.

In transfer

Being back in Holland takes some adjusting. It is incredible how inflexible people are and just how little pride they have in their work. I obviously have a lot of administration and arrangements to be taken care of after a month, but people just can't seem to get things right the first time round! I have found myself having to call certain companies over and over again to sort out their mess, concerning me! That is the most irritating part! One of these companies was my provider, hence the lack of posts these past few weeks.

Much has happened. I had radiation therapy and my Iodine treatment. I am very pleased to say that this time round the Iodine uptake was excellent, the implication being that I am still considered to be treatable. A totally different situation from what we were expecting around July. I have to say that despite the incredible pain, I am feeling stronger every day.

It is the incredible pain that has me locked up in my house again. Marcus has not only been a wonderful partner to me, he has also been functioning as my nurse and driver, just so that I can get around the place. We have also been spending quite a few hours in the hospital for various check-ups.

In the meantime, Gulsen, Saskia, Ineke, Myriam, Aldith, Angélique and her husband Hugo, looked after Kiara in my radioactive week. It is so wonderful how communities can raise children. I am ever so greatful for all these wonderful people, spending their precious time helping me and Kiara out. Kiara is in splendid shape!

One of the places Marcus drove me was to the reunion of Sweeb women.








Up to 10 years ago it was a bi-annual gathereing of the women decending from my maternal grandfather. 3 generations of beautiful women got together to discover their similarities and differences and to just talk about life. Look at my cousin's daughter, Aisha and myself...don't we look alike? And we share the same name too! I held a mini workshop in search of our identity using my PR and marketing skills. It is getting harder and harder for me to do things like this as the pain I was in was excruciating and by Saturday night I was worthless. None the less, we managed to produce some mood boards which I am particularily proud of.

Like the most of last week I spent Sunday through today, either in bed or visiting doctors.
I finally managed to get to the Neurologist today to find out what is happening to my eyes. I will be put through a series of neurological tests to rule out Myasthenesia Gravis which by know I do not believe I have fallen victim to. The question is: What is going on?
I seem to have met a Neurologist, Dr. Visser, who is determined to find the answer to that question. My meeting was followed up with a meeting with Dr. Lips who was delighted by the news about the uptake of Iodine. He is making extra scans following up on the Pet scan (finally the total body) that was taken just before going into my treatment a week and a half ago. The scan shows spots that I knew were there. No suprises! Which is just what I was looking for.
Dr. Lips seems to get a shock every time he sees my scans and apparently forgets that the spots were there in the first place. I have noticed that the Doctors can't get their heads around my case. Luckily I can! I am on top of things and they are following my lead. I am most greatful for that!

In a muddle

A very short entry today as it is extremely late! I will be in the hospital as of tomorrow for my next Iodine treatment. Coming back from Jamaica was very hectic with Kiara's baptism on Saturday and Capoeira exam on Sunday.

Monday I was back into radiation therapy for my shoulders which seems to be catching on, and the rest of the week was spent preparing for tomorrow when I have my next Iodine treatment. It has been crazily busy, but next week I will have time to catch up on all kinds of details in my blog section.

Most importantly, I am back, linked up with technology again as I had to change my account, receive a new modem and hook up again. It is incredible how much we do with the internet. That alone was a huge handicap.

Some great news today, I will be getting an extention for the period in which I am granted a parking pass for the disabled, offering me another 4 years at least of actually leading an active social life.

I feel pretty sick with all these pre-admittance hormones, but am trying to think of Sunday when all is over. This time around I am taking the Iodine free diet very seriously. I hope it helps. As far as further treatment, I have made plans with Dr. Van Triest to actively target the remainder of the tumors. I feel like I am doing quite well. I have also had a meeting with the Rehabilitation Doctor, Ten Hengel and am welcome to come back to train my shoulders when we get this round of treatment behind us. Anyway, I sound erratic, so it is time to get some shut-eye. I will try to catch up with information on here by writing an entry every day next week.

For now, my admittance in the VU hospital is from tomorrow (Friday) through Sunday.

While at the VU hospital I can be reached at the following number:

+31 (0)20 795 51 90

Jamaica Part V

Well, our trip to beautiful Jamaica is coming to an end. Jocelyn came and saw us for the last 6 days, but she had to go back today. We spent a good time on the beach and doing things in town. An additional trip to Dr. Scott had her see the country a little more. Jocelyn, it was awfully great for you to come and see us.

After sending her off at 5 AM Kiara, Anna and I started working on closing up the place and the cleaning. We had half the day left to do our last shopping. Will be back home on Thursday. I am not blogging under ideal conditions so I will be writing more later.

Back in Jamaica Part IV

Bird went to the Birds again. One of my favorite stops in Jamaica is the Rocklands Bird Sanctuary. An old lady that had lived in the UK settled back in Jamaica when she was pensioned. She used to talk to the bird and fed them sugared water and seeds. The birds, including the national bird (the doctor bird humming bird) gradually became tame enough to sit on her finger and drink. When the old lady passed away the estate was handed down to the Rockland Bird Sanctuary foundation. Jamaican school kids go there and learn about the nature in their country. It is also open to tourists. This is one of those places on Earth where I feel totally at home. It is as revealing (or releiving, as you wish) as the dolphin swim for many. We headed back afterwards and passed by the Rasta restaurant for food. That was really quite and experience, walking down an alley way to God knows where. To ensure our safety I meandered through there paying my respect to anyone who want to be respected. Dinner was great and we also tried some natural juices.

Back in Jamaica part III

We have reached the halfway mark of our trip. How time flies. On Tuesday there was a big bash for the Olympic winners from Jamaica. During their tour around the island they made a stop in Montego Bay. We attended it in the steaming heat. Much to my suprise it was an organised crowd. Each and every one of them proud to be a Jamaican. Of course the crowd cheered the loudest when Usain Bolt made his appearance.

It is amazing how organized this beautiful country is. The merchandise was available all over the place.

The Bushman stopped to make conversation with us. It was sensational. A day that ended at Mobay Proper, a local restaurant to send off Marc who, unfortunately was leaving the next day.

They were out of the steamed fish which was the whole point of us eating out. So later that evening Marcus and I had a romantic dinner at The Native, a restaurant with an exquisite cuisine. Wednesday was not so nice. We brought Marcus to the Airport and Kiara and I went to see a doctor.

Kiara for an inner ear infection, and myself for tendonitis. The medics are fine here, either educated here, in England or in Cuba. It was interesting to hear that the hospital here in Montego Bay also has a nuclear department. Very handy indeed.

The medicine kicked in quickly..but we are still missing Marcus a lot.

Back in Jamaica Part II

How time flies. A second week has started in Jamaica. Even the locals have gotten used to us. A trip to the craft market is a lot less strenuous as the people know that they have sold just about everything they can sell us.

On Thursday we made a trip with the whole family to the YS Falls and the Black River. We picknicked in the lush lawn of the falls and after a refreshing swim, we headed to the Black River to see the crocodiles. It was a great journey and all of us enjoyed it!

Unfortunately, Mom, Dad and my Auntie Tirza had to leave yesterday.
Marcus and I have moved into my sister's home now and are staying there with her and Anna, my friend and travelling companion. We are taking it easy now as the last week was truely action packed. As far as my health goes, I can almost forget about it here, which is a great thing after 2 years, almost of ailment. I have shaven my hair way down, and my bald patch is slowly growing again. With the hair Sinaéd `O'Connor style, you can hardly tell that I am bald. 0' Connor turned Rasta you know. More news from me later.

Back in Jamaica

Being back in Jamaica is wonderful. It seems like yesterday that we were here. Kiara instantly felt like she was at home and it did not take long for my pain to deminish. The heat soaks into your muscles gradually relaxing them from all the tension we carry around with us in the modern World.

Marcus has called me a mountain goat because I run up and down the hills-side and the stairs all day like I had never been operated at all. Being sick in Jamaica does not feel as bad as being sick in Holland. We have had busy days since we are here, visiting Ocho Rios to swim with the Dolphins, Savannah- la-Mar to visit the caves at Roaring River, and the Dunn's River Falls. The food is great as well and vitamins and minerals grow in the wild.

It especially nice seeing that Kiara is stress-free here. She has deserved this, really. 

Jamaica is a spiritual experience, I could go on about that for hours. However, that is a thing that everybody should experience for him or herself.

More later!