Today I felt a bit sick and nauseous, Eventhough I din’t have much energy, I still walked a few rounds over the department, I spent some time on the cross-trainer and I even trained my muscles with the fysio therapists. There were no visitors today, so I spent the afternoon and evening with Netflix.

I am not feeling too great today, I feel a bit nauseous and tired. I still managed to walk around a bit and to have a work-out with the fysio therapists. They have a nice exercise room here. The rest of the day I spent in bed. I hope that tomorrow will be better and not worse.

Again ThioTEPA was administered in the morning at late at night. Luckily I could sleep during the admission of the chemo. In the afternoon my parents and my sister visited which was great. It is a long drive to get here, and I appreciate the effort. My tummy is feeling slightly strange. Probably the chemo is starting to cause some inevitable side effects. 

They administered ThioTEPA in the morning around 11.00 a.m. and twelve hours later at 11.00 p.m. I had no direct side effects from this chemo. I feel just a bit nauseous but that could also still be a result of yesterday’s chemo. The openness of the ward makes a big difference, I can walk around, talk to people and make use of the exercise equipment if I feel up for that. I notice that feeling at peace with the schedule makes a big difference in my attitude. In the Spaarne Hospital in my previous course, they made a last minute change to the treatment schedule which they only explained after the chemo which was in the weekend. Now I have the feeling that this treatment is the best and also for the MS, that helps a lot. 

According to the treatment scheme, I am now in day -6. On day zero I will get my stem cells back. Today they administered carmustine, it made me nauseous and caused my face to hurt. The chemo was administered over at two hour period, luckily after that, the side effects cleared up. All that remains now is tiredness and a bit of a headache. Hopefully the chemo tomorrow will not have many side effects. None of the nurses here have any experience with the drug ThioTEPA, so they can only speak of possible side effects from literature and not from their own experience. The chemo will be given twice a day, once in the morning for two hours and once twelve hours later. I will have the same on Sunday.

Today Adrienne and te kids came over to visit. I was a tired and nauseous when they arrived. Adrienne took them to  kinderstad (a large indoor play area, on the top floor) so I could rest and the kids could play.. We had some time together when they came back so they could check out the ward, and as Adrienne brought dinner, they could eat here as well.

This morning I ‘checked in’ at the VUmc in Amsterdam. The hematology department will be my residence for approximately the coming month. Tomorrow the chemo carmustine will start, on Saturday and Sunday they will administer ThioTEPA. Both chemo agents will destroy the bone marrow and one week from now my stem cells (that were harvested after the last chemo) will be reintroduced. They will repair the damage, but like last time, a weeks long period of severe shortage of white and red blood cells as well as platelets will follow. 

At the VUmc the entire hematology department is ‘isolated’, meaning that instead of having lock doors at the enterance of my room they are at the enterance of the entire department and I can leave my room and roam around the department, resulting in a less locked-up feeling as last time.

For now I have a room on my own, but when other patients develop symptoms that require ‘contact isolation”, I will have to move to a two or three person room.

Yesterday we went to “het gouden woud” with two other couples and their kids. The playground is a former barn for cows, which was rebuilt to be a large play area with sand and water for kids. The fun thing is that in the sand and water small stones painted gold were hidden. Whenever you gathered 100 grams of ‘gold’ you could exchange the pebbles for a couple of candies or chips. It is a great way to keep the kids (and often the parents) busy looking for these stones. The kids had a great time and as a consequence, we the parents had a great time as well

This afternoon we went with the kids to Monkey Town, an indoor playground. We first planned on going to the zoo, but the weather forecast was awful for today so we decided to postpone that and do something indoor instead. It was a lot of fun to see the kids enjoy themselves.

Tuesdays used to be days on which I was off and was taking care of Thomas and Nils. Most of the year other people were taking care of the kids on Tuesdays because I didn’t have the energy to do it. Adrienne, my sister, and my parents helped out. Today I to took care of the kids myself. We had a nice time, and even though it was exhausting, it felt good.

I haven’t written much on my blog lately. Things are slowly improving, apart from having a nasty cold, my energy is slowly getting better. Things are not yet as they were before the start of the treatment but they surely have improved from when I left the hospital after the stem cell harvest.

Together with a physiotherapist, I am working to improve my fitness. When the next treatment will start next week Thursday my health will inevitably deteriorate, so I am trying to go into the treatment as fit as possible.

Also, in some places, my hair has started growing again. Strangely nose hair seems to be the first to go and the first to grow back. I haven’t been able to come up with a convincing reasoning for this; I don’t think my nose hair is exceptionally lush.

It feels strange to get better at home and then go to the hospital to feel worse again. Hopefully, the treatment will work and it will be the last time.

Last weekend friends took care of the kids, which allowed Adrienne and I to spend time together. After a nice lunch on Sunday we picked up the kids again, and Thomas and I went to see the new despicable me movie. It was fun to watch the movie together.