Shymo’s blog: what’s next

Shymo

10-10-19

Tomorrow i’m going to the hospital. would finally get my new medicines, but I think I’ll have to wait for another week as my doctor did not receive all the required permissions just yet. I don’t mind, what does a week extra matter on top of all the months that I’ve been waiting. That is how long I’ve been waiting already on the medication ONC201. But it would be amazing if it works of course.

I haven’t been up for much lately. I don’t feel well and I’m not energetic at all. Simply said I have not doing anything, but that is because my body is simply not helping me out. I’m cold constantly, got pain in my body (especially my back) and there is so much fluid in my body (my left leg feels like it’s going to explode) which really hurts. Also I’m not hungry, that is because my body is so swollen. I’m terribly tired and just not feeling well. Simply said, I feel like shit and it will only get worse if nothing’s being done about it. Because of this I can’t do any fun activities during the day, as soon as I come home from the gym I have to take a nap on the couch.

What is terribly hard for my mind, is that we keep getting different signals: first we received another rejection from the US, but after that we thought we found another way and the MRI results were in our favor (it showed signs of shrinkage and stability), after that we got rejected again and the decision was made to start with another treatment. This gave me such an overload of emotions that at some point I really didn’t know how to cope with it anymore.

You haven’t heard from me for a while and that has its reasons. One of them is that I have been so tired that I just didn’t have the energy to deal with the world outside. Also I simply did not know what to write about or what you would like to read about. Stupid right? Currently I’m doing a lot of things at which you don’t have to think, like watching a series or stringing beads for the new necklaces that will appear on LittleLoveBird.nl. And even after that I have to take a nap to get through the day. But there is a slight victory today; the smallest bedsore finally closed up.

This weekend I did visit the girls at the IJhallen (second hand clothing fair). The were there with the 12 of them selling theirs donated clothing and all of the revenue went to Stichting Help Mo Nu!. Of course I wanted to join and help out but waking up at 05:30 was just impossible. De girls and I really enjoyed it, we had the greatest fun! I’m so lucky to have all these friends around me and that makes me very happy. I’m very grateful to all the people around me, that support and love me.

17-10-19

Tomorrow, if all goes well, I’ll receive my new treatment. I have to take this three times per week, two weeks in a row and then I’ll have to take two weeks of rest. After that I’ll get another medicine as well. I find it exciting but mostly I feel relieved that something’s happening, something new. It is not a nice thought that the tumors can continue to grow when there is no treatment against is. I haven’t received any treatment for quite some time, so it became time to finally get some good news. The treatment has about the same change to catch on as the ONC201 from the US and that is quite a nice thought. If this treatment becomes a success it would matter a lot. I don’t have to go all the way to the US, which for me would be quite a task. Also at this moment I don’t know what to tell people that well, because it could happen that I won’t get this treatment as well and I would make a big fool out of myself. I will wait patiently and hope to be able to tell something next week.

The last two weeks I felt weak and was not in the mood for anything. I was just sitting on the couch watching Netflix and having naps and couldn’t get myself to do stuff. would not say it was unexpected, because it has been a very busy period. I’m taking Paracetamol and Diclofenac against my backpain and it helps me a lot. I’m sleeping better and slowly start to regain energy and the spirit to do stuff again. For weeks I’ve been trying to figure out why I’m holding so much fluid in my body. First it was only my face, but now it has spread to my whole body and a fluid bubble in my left leg feels like it’s about to burst. Tuesday they discovered that I have a blood cloth in my leg muscle. When we get rid of it, the fluid will reduce as well hopefully. The fluid is quite troublesome. It hurts and that makes me grumpy. But for the rest I started to feel a bit more energetic the last couple of days, which makes me feel better.

31-10-19

Tuesday I took the last pills, for now. Currently I’m having two weeks of rest and I must say that the side effects are not that bad. Of course it’s not fun to sit on the couch for almost two weeks, have no appetite, having cramps in my stomach and simply said just not feeling well, but I did prepare myself for this mentally which does make a difference. I have to give myself a shot once a day for the blood cloth in the vein in my leg and the it looks like the fluid is reducing (finally!) and that feels very good. Bit by bit I start to become more and more of myself again and I really like that. At one point there was so much fluid that I didn’t even recognize myself and that was quite hard. It was so that I gained about 10 kilogram in weight all because of the fluid in my body. Wednesday was the first time in a few weeks that I went to the forest with Siem. It was amazing. Being out for a moment was nice, because being inside all the time is not good for my energy level, while I do need the rest sometimes.

1-11-19

Today I went to the hospital. I had to be there at eleven and hoped to be back home early, unfortunately that wasn’t the case. The results from the blood test showed that my levels were very low, so I had get a blood transfusion immediately. Before I started with taking this medicine it was told to me that this could happen, so I was mentally prepared. I’ve started to get used to all the shots and infusions so it was easy to prepare for. Finally we were able to go home at five o’clock and I was destroyed. I did get potato chips from one of the nurses (she got one for me from the food trolley) which was one of the good parts of this visit. For the rest there were no allergic reactions from the transfusion so that was all good. After the blood transfusion I started to feel better, especially in my head. I noticed that on that evening I was not as tired as I normally am. That did show that good blood values are really needed to keep the body going. The coming two weeks I’ll have no treatment and after that it’s back to business, bring it on! It is going to be intense and I have to be a bit patient because the medicine that I will get additionally has the same side effects. The biggest downside is that my blood values can go down rapidly and that could bring some quite unpleasant things along. I could get internal bleedings as well as bruises and cuts that won’t heal. But all and all I feel quite well; I just keep going as always!

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