24-05-20
My birthday! And of course the birthday of my dear sister Zyara! That I’ve been born on Zyara’s birthday continues to amaze people haha, which I totally get! But I always enjoyed it and we always make sure to have a good time! I turned 20. That means that for already three and a half years I have been fighting and enjoying (as far that is possible). You might wonder how we were able to celebrate. Well, we came up with a great solution: open the front door and place a wall of Plexiglas (thank to dad and Elsa). That enabled us to sit on both sides and chat. And outside we decorated the surrounding with balloons and other decorations. People came in small groups and it was amazing. Mam was spoiling us with her amazing cooking skills and made mini pizza’s, pastries, and many more delicious goodies! We also had two amazing cakes from Brakenhoff and a friend made some brilliant cupcakes. Also with present I have been spoiled. From my friends I got a SHYMO magazine, with fun memories and stories, so well thought of. Furthermore I got jewelry, clothes, flowers, gift cards and many more things. Because of all that I accidentally sat in front of the Plexiglas in my chair from 11:00 till 20:00 and I was dead tired after that. But the day in advance already I said: it’s going to be worth it. Going for one day of full tiredness did make me get everything out of that day, and it was amazing! I could not have been happier.
The week in advance I was already very excited about my birthday, but of course the evening before my birthday at 21:30 the situation got out of hand again… Why does this always happen in the evening? And exactly during Pentecost weekend. Every time it goes like this. But, to give a quick summary: there is a hump beneath my scar from the biopsy. It could be brain fluid and that is super dangerous. But if it is not growing and my temperature remains the same it can wait a bit. This week the surgeon will have a look at it. So that was a big mood changer for us and they even mentioned that I might be hospitalized. We were sitting ready on the couch all evening. Then in the morning I also did not fit in any of my clothes anymore so the day was already ruined for me (and we did not even start yet).
But fortunately that was not for long, the people who came by cheered me up completely! I don’t know how they did, but within a few minutes I was back to being myself and had an amazing birthday! I am so grateful to everybody and so happy with the people around me, unimaginable.
27-05-20
They did an echo and felt and looked at my hump. It’s moisture, but they can’t tell what kind of moisture. They don’t expect it to be blood or an infections since I’m feeling ‘well’. It could be brain fluid or another moisture but because it’s not changing in size or position there is no need to remove it. As long as it remains like this and I feel alright the body should clean it up by itself. Opening it up brings more risk than letting it heal (remember my bed soars? Yes, after a year they’re still there). At the next MRI scan they want to give it some extra attention.
29-05-20
Since a couple of days it seems like I’m getting some strength in my abs back. So I hope I can do some exercise soon. With exercise you can think of that I want to eat at the dinner table three times a day. That stimulates a lot of muscles and you have to start somewhere right? That strength in my muscles is coming back could be due to the reduced amount of prednisone. That is finally possible since I’m using rheumatism medicine. The pain from the rheumatism is not there the whole time, it comes and it goes in waves. The pain that I currently have is mostly from the moisture and sore muscles, which is increasing as I’m getting some feeling back. My arm is still lacking behind, but even there some strength is coming back. Because of the moisture my skin is literally ripping apart and everything hurts. The stretch marks are now over 10cm long and more than 2cm wide (and it keeps getting worse). One improvement is that I haven’t had anything epileptic related for a while.
Something that is really nice, is that Siem probably goes into quarantine! “Huh is that fun?”, yes, because if Siem does not have Corona he can come live here with me and we can be around each other. Do realize that we have been separated for three months. And more than half of the time a windows has been between us. I am really looking forward to it, but I do realize it won’t be easy for Siem to go from a life outside to a life of quarantine. I got used to being home for weeks or even months straight, especially during the times that I felt bad. But for Siem and most people having a busy life and traveling around is their normal routine, so that is something to get used to! But still I am looking forward to it. Even if it’s just watching a movie together, that is more fun than watching it on your own. Although, I’m never really alone but that is also something you get used to.
Friday we’ll go to the PMC again for a checkup and meeting. Then we hope to hear about a plan for the future, as the radiation treatment is finished! We’ll see.
