Month: January 2018

I’m not drunk, I have MS

Twice per week I attend a physiotherapy training group. During the Monday session I practice my balance with various exercises, and on Thursdays, I train my muscle strength. Yesterday I slightly overdid the exercises, making my legs so tired that they feel like pudding today. As a result, I spent most of the morning sitting on the couch. In the afternoon I had to pick up Thomas from school. His schoolhouse is close by, so I walked like I do every day. This afternoon my legs were extra wobbly, and it cost me some effort to steer them in the right direction.
I overlooked a car that was slowly driving in the parking lot that I pass on my way to school. When the vehicle crossed my path I wanted to stop, but my wobbly legs reacted a tad bit late, and the car had to slow down as I passed.
A heavily tattooed driver opened his window to shout (freely translated from angry dialect) “don’t drink so much, and watch out!”. I answered that I had MS and that too much drinking was not the problem. Still angrily swinging his tattooed arms around he shouted: “then at least watch out!” as he drove off. I shouted back “you are right, and I’m sorry.”
This somewhat entertaining encounter reminded me of something I felt more than a year ago. Back then, there were times when I felt that my body was reacting as if I was drunk, wobbly legs, lousy coordination, distracted, and back then, a slur. Even if I don’t need one, I sometimes feel like walking with a cane, just to show that I (most likely) am not drunk.

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Good news

The scan was good! No MS activity and no visible tumor. Just scar tissue left by the biopsies. Great news!

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Tonight at 19.00h is the appointment with my neurologist to discuss the MRI scan made last Friday. The hope is that the lymphomas have disappeared on the MRI, as well as that there are no active MS lesions.
I have no feeling about what the outcome might be. If I would have been a healthy person before this all started, it might have been easier to feel whether something is still wrong. I clearly was not a healthy person. Even though I don’t feel as bad as at the beginning of last year, there is still a lot of room for improvement. Then again, there was a lot of room for improvement in 2016 as well. What I am trying to say is that I am totally in the dark about tonight’s appointment.
On my blog, I have mainly been talking about my cancer, but multiple sclerosis by itself can also suck a great deal. The chemo that I had followed by a stem cell transplantation is considered to be even stronger than the most effective therapy for MS. Finding MS activity on the MRI scan also has unwanted implications.
For now, nightmarish images of a new brain biopsy, new chemo’s, new hospital stays, and further progression of my MS float around in my head. In seven hours we will know more.

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Happy new year

Happy new year! Last year has been a turbulent year for me. It started with feeling sick at the beginning of the year, and an ominous finding on my MRI scan at the end of February. After a long diagnosis trajectory, I started with a harsh chemo scheme in May. The whole treatment scheme took until the end of October. From then on I am recovering at home. To say that 2017 kind of sucked healthwise for me, is somewhat of an understatement.
But apart from the hospital stays, biopsies, uncertainties, and treatments, there were also plenty of enjoyable moments. Even though 2017 sucked, I wouldn’t have wanted to miss it.
Like last year, I created an overview of the year in pictures. If you are interested you can check out my iCloud album.

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