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!