The aftermath

This weekend Adrienne was in Switzerland, so I was alone with the kids. We had a great time, first at the party with my colleagues and yesterday Thomas, Nils, and I went to the ‘Kermis’ (fun fair). It was nice, but now I am completely destroyed. Staying within my boundaries has always been a challenge.
So I feel like I have to add a side note to my acceptance statement of yesterday. I still think that accepting your current state is important, but accepting limitations and consequences is as well.
I am happy that Adrienne is back, but I had a nicer reunion in mind than sitting on the couch and feeling like a sack of potatoes. Nonetheless, I am happy with the things I did this weekend and I am not sure wether I would have done things differently in retrospect.

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Great get-together with old colleagues/friends

Yesterday I went to the house of a former colleague and good friend for a get-together with colleagues/friends from when I was working at the Eindhoven University of Technology some ten years ago. She organized this gathering to celebrate me doing so great. It was fantastic to see everyone again. Even though I had seen many of the people at Prof. Bart’s retirement in December, it felt like ages ago since I saw them.

Feeling sick feels like ages ago.

Our family just returned from a short vacation in Riga (Latvia) and Zürich (Switzerland) and even though I still am not as fit as a healthy person, we had a great time and everything went well. How things were or what might have been, has moved to the back of my brain.

Animals are still masters in accepting things as they are, living in the here and now, and just making the most of a situation without lingering on what was, or might have been. I am sure that when we embrace just a sliver of this attitude to life, our everyday experiences can be a lot brighter.

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Case report

I have become a published case report. A somewhat dubious honor. (Click on the picture for a link to the article). I am still doing fine by the way.

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Father’s Day

We went to “Dierenpark Amersfoort” yesterday. We had a great time. There is a lot to see in the zoo, and a lot to do (climbing on a route over the bear cage, walking through tunnels under the wolf’s den, slides everywhere), we all had a great time. What a difference today was to a year ago. I had just finished my first round of chemo by this time last year.
As long as I get enough sleep, I am doing great. My speech has improved, my energy level is back to normal and I no longer am very fatigued which is great.

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I feel good. My curly hair is back, and I feel better than two years ago. That isn’t to say that two years ago I felt healthy, but it for sure is better than a year ago. One year ago I wouldn’t have believed you if you had told me that I would be swimming with the kids next year.

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Diving in the Philippines

From April 7 until May 5 Adrienne the kids and I were on vacation in the Philippines. Adrienne’s parents are living in Manila, and we had a great time visiting them. From the 21st until the 25th Adrienne and I went on a short diving trip while we left the kids at her parent’s place. We had a great time. Even though it was 35C and the cabin only had a single small fan, that was on about half of the night due to the intermittent power supply, we slept well.
The dive crew helped me by carrying the heavy bottle and weight belt above water. The diving itself went great. Check out a video of me diving on youtube.

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Good news continues

Yesterday’s MRI scan shows no active MS lesions and no lymphoma. Great news!

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Next scan this Thursday

We celebrated Thomas’ birthday party last Friday. His last party seems an eternity ago, back then I was still waiting for the diagnosis. So much has happened last year, and even though my last hospital stay ended only five months ago, it feels like a decade ago.
My next MRI is this Thursday (5th of April). Originally it was planned for mid-May, but it was moved up to take place before my vacation (I guess a slot freed up). The neurologist promised me to call me on Friday with a preliminary ‘outcome’. At first, I wanted to cancel the scan and stick to the original date in May, but aside from emotional considerations, there seems to be no reason to postpone the scan.

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The family and I are going on vacation to the Philippines. We will mostly stay at the house of Adrienne’s parents in Manila. But for four days Adrienne and I want to go diving on Pandan island. Diving does not require a great deal of effort but being deep underwater has risks. To be able to dive the guidelines (and thus every respectable dive shop) requires you to either be healthy or to have a recent medical checkup by a certified medical doctor.
The first specialists that I contacted told they could not check me because my case was too complicated for them. In the end I was checked up by the sport medical doctor of the Jeroen Bosch hospital, who also consulted my neurologist and hematologist.
There is no reason why I can’t dive, and I got my certificate. Let’s see how it goes!

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Graduation of my last Ph.D. student

Mohsen Ghafoorian, the Ph.D. student I supervised since 2013 graduated on March 8.
Mohsen was there when I was diagnosed with MS, when the disease progressed and I had to stop supervising four other Ph.D. students, and when I was diagnosed with brain cancer last year.
It was a great pleasure to be the first one to address Mohsen after he received his title in an official ceremony. Not only did Mohsen perform excellent scientific work. Some days my MS made me slow, sometimes my speaking was slurred, or my thinking clouded. On these days I felt inadequate as a supervisor, but Mohsen never made me hesitate to ask for an explanation, and he always took time to discuss ideas. I left our meetings with a great feeling, a sense that I did contribute, that I was heard, and that my opinion was valued.
For now, Mohsen was my last student. Hopefully, in the future, I will be able to co-supervise a new Ph.D. student.

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