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Shymo’s blog: what’s next

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!

Shymo sporten bij fysio

Shymo’s Blog: exhausted

01-09-19

You won’t believe how hectic this week was!
On Monday I went to physiotherapy and after that straight onwards to the rehabilitation center for my bedsores. Tuesday I had to go yet again to the rehabilitation center and after that I went to Gyl (my brother) and Charlotte (my sister in law) for dinner; Siem and I do that once in a while and we enjoy it a lot! They cook and we for example bring the dessert. During our latest visit I also gave an interview, so that was a late night! Wednesday I started the day with a radio interview on channel FunX. Yes, it was an early morning, but that doesn’t matter… Alright, it did matter a bit since I don’t sleep that much, haha. After that I went straight on to participate in the morning show of “het AD”, thereafter I went to physiotherapy and in the afternoon a photographer popped by. Thursday I started the day with an interview on Radio10 by Gerard Ekdom, after that I was another session of physiotherapy. In the afternoon there were even more things planned, but it was just too much at that point. I was exhausted and I actually still am. But as we move on to Saturday I could finally enjoy a bit of sun, I think I deserved that, right? Also my skin could use some vitamin D, you don’t get prettier by sitting a month inside, I can tell you that! So at that point I was fully enjoying my series in the sun; amazing. This week felt like a race, but I also feel satisfied. In the end I did overstep my boundaries, I noticed.

Sometimes I get the feeling that people forgot that I’m sick, I have the same sometimes. I don’t mean that in a negative sense; I’d say it is more of a compliment, because people tell me that I look good and energetic. That gives met the feeling that I have loads of energy and that I can do a lot, actually too much. For example, after having my exercise I still have the feeling that I can go to the forest; well guess what, that is not the case as I immediately fall asleep on the couch. I also noticed during all these interviews that it costs a lot of my energy. That is not the only thing where all my energy goes to: since I have two big bedsores on my back which are not healing properly and if your body doesn’t have that much energy the whole process takes a lot longer. I will safe you the pictures of my bedsores, especially for the people that don’t have a strong stomach, haha. What I’m trying to say is that not everything is always what it seems. Much more things are happening on the background regarding the foundation and getting cured. You might not always notice that, which makes sense. If you have the time, maybe it is an idea to look up what comes around with a paraplegia or dexamethasone (which is the reason for my swollen face). But I also don’t know everything the comes around with a paraplegia as everyone’s situation can be different.

Despite that this week was actually too much for me, I did enjoy it a lot! The people who shared my story were all very kind and compassionate. I also am fully convinced that I did a good job and that gave me a lot of confidence! Siem and I also laughed a lot this week, for example during the morning show. You don’t get to see what happens in advance, but it was very casual so we could joke around a bit before we went live. I was a very fun, but exhausting week. Would I do it again? Absolutely! But then I would take it a lot more into account how much energy it would cost to avoid a total breakdown at the end of the day. That is why the whole weekend I did absolutely nothing to regain my energy. Sunday I did have lunch with two friend. I noticed that it makes me feel well: having a social moment and not sitting on couch, as you can find me a lot over there.

Tip: take care of yourself and be aware, self-care is very important.

Bios foto

Shymo’s blog: the worst

06-08-19

The last couple of weeks a lot of people asked me what the worst thing is that I am going through or have gone through. For now, the worst I can think of was the recent hospitalization.

What matters to me is that during the process of losing strength, functionality and feeling in my legs, I at least got time. It is incredibly tough to go from being able to walk to becoming bound to a wheelchair, but I did get more than a year to go through the process. You get to a point where you accept it. Also the doctors call it an “incomplete paraplegia”, which could mean that someday I might be able to walk again. So what can I do about it? Keep doing my exercises and just keep going; that is what you can do. Or at least, what I will do. After some time you discover that your progress halts. From that moment on you reach a point that you can only work on your endurance. Fine; let’s do that. Let’s work on my endurance three times a week, I also enjoy it! You do have to imagine that this is a process that happened over a longer period of time.

On Monday I was still working out as usual, Wednesday I had to skip because of the pain in my stomach and back. Then, suddenly on Thursday I was in so much pain. I never screamed from pain, but that day something went horribly wrong. Back- and stomach pain, where was it coming from? What was going on? There was no other option but to get to hospital as soon as possible. I went to the hospital with my dad and Siem and when we arrived I got hospitalized and checked by the nurses almost immediately. But why is Mo having so much pain? That is what everybody was trying to figure out. At a certain point I got told it could be appendicitis or stomach ulcer, so first I thought “yes they take out my appendix and I’m good to go”, but that wasn’t the case. Many questions remained unanswered. After a lot of morphine and esketamine they were finally able to get the pain under control. Still we didn’t expect that I had to stay that long until the nurse said: “I’ll see you next week!” From that moment on, I lost it and almost EVERYTHING changed.

We got to a point where the paralysis moved up in my body. My paraplegia wasn’t limited to my waist anymore, no, it moved to above my shoulders. Believe me when I say that you have no idea what you’re going through when that happens. Your mind does not get the time to process this. Your body is ahead of your mind and then you need to adapt, it is the only thing you can do. But how should I deal with it if I was capable of doing everything at first and that turns into almost nothing?

So they did an MRI scan and result showed that all of the tumors had grown. Really; I have never been thát angry. Why, after two-and-a-half years of pushing through, fighting and never giving up could I still not have a bit of luck? Where is my bit of luck? Personally, I believe that I deserve a hundred pieces of luck already. And come on, I have to live with this. t’s not like that I can turn the feeling in my stomach or left toe on and off whenever I like. That makes me upset. Not knowing what’s going to happen, every day. That day was one of my biggest nightmares and guess what: nightmares can come true as well.

Anyway, a month and a bit has passed and some of my functions are coming back. This is good news, because the longer you lose an ability, the lower the change that you might get it back. My right arm is almost back to normal, but senses still lack in my fingers. It could be that the feelings in my fingers come back, but for now, no one knows. Also, some feeling is coming back in my torso. You could say that the new paraplegia has been reduced by half, but this is far from good. I keep discovering new things like this on a daily basis, but again, no one knows what will happen next. Currently I am getting back into a rhythm during the day and I’m sleeping quite well again, which is good! Also I’m finally able get out of the house again and take part in some activities, such as the fundraising dinner (which was very impressive!), going to the forest for a stroll, and I even went to the movies and saw the Lion King! You can imagine that it’s quite challenging for me to do these things, but for some reason the amount of fun and excitement give me the energy to do this. That is the fun part! I feel well, as far as I can be! I’m having a great time with all the beautiful people around me, it can’t get any better than that right?

Laatste bestraling

Shymo’s blog: hair loss

03-08-19

I started losing my hair already; we did not see this coming. Totally unexpected and quite early. My mother and I thought it would be nice to have a hair-wash-day, but that turned out into something else. Hair kept falling from my head up to a point that it became so much that we both started crying. Just the hair on the back of my head can’t be that much right? I am confused and don’t know how to cope with this. How should I act on this? It seems I’m losing all of my hair but wouldn’t that happen much later?! What a mess.

But in general I am able to deal with it a lot better than I dared to expect. That is because since the first chemo that I had (two and half years ago) I always took into account that I could lose my hair someday and this is the third time that I received radiation treatment already. For now it is only the back of my head but everybody knows that I have a lot of hair. It was quite shocking.

05-08-19

I’m feeling happy. Today I had my last radiation treatment and what a day it was. My best friend just came back from holiday so I immediately dragged her along to the hospital. Amazing to see her again of course! I was already happy to go to the radiation treatment, purely to get it over, so imagine when your best friend joins as well! At home I had a cheeky piece of cake because this had to be celebrated. It feels good to close another chapter. Yesterday and today I improved a lot and if I keep going like this I expect to be back in the gym in about two weeks. But, we can’t move beyond the facts just yet. Three to four weeks of side effects are yet to come from the radiation treatment. There are also positive side effects from the treatment, such as getting functions in my body back, which is happening already. Today at the radiation treatment I thought it would be nice to take a picture to close this chapter, but I wanted to do this while sitting. While I was getting up to sit I thought “why is she pushing that hard?”, because someone was helping me. But that was not case: I was doing it by myself! Haha, I was in total shock but if felt great! The picture turned out good and I took my radiation mask home. So far the negative side effects of the radiation treatment are: painful esophagus, hair loss (the bald skin feels burned as well), itching neck and a very swollen face. We shall see how long it takes but in the meantime, the radiation machine cannot bully my head any longer!

Shymo en Oties

Shymo’s blog: fears

30-07-19

Did you know that I can smell it when they give me the radiation treatment? And I mean at the exact moment when it happens. Then they take a short break but after that I can smell it again. It is a very distinct smell, a bit magnetic maybe?

I still don’t know what day it is. What time it is. How I feel. How long it has been since I left the hospital. To me it feels like days, but the reality says something else.

Today Elsa dropped by for my physiotherapy and I could do a lot more compared to last week. That feels really good and motivates me enormously to become able to do things by myself again. As example, currently I am not able to get in my wheelchair by myself. Since I cannot do that, everything has to be done for me, things like preparing food, going to the bathroom, or even switching from laying to sitting down, but I am improving again.

Some moments can be really tough. Yesterday I had to cry when I realized that I can NOT lay or sit down comfortable, while those are the only two things that I’m currently able to do. Should I lay sideways? No, that doesn’t feel nice. My back? No. Straight up? No. It is tough not being able to get into a comfortable position, every position felt bad.

Try to imagine (which would be very hard or maybe even impossible): I was hospitalized with two legs that are not working. Drip connected to one hand and suddenly you other hand that is not responding anymore. For days you’re laying on your back in the same position. You are scared, frightened, and you feel trapped. I have screamed for my mother because I suddenly thought she left and did not realize where I was. Every day I thought I was in another room and in another bed. I never had fears, but when I came home I did not even dare to sleep in my own bed. Especially not alone.

Still I have nightmares every night and mentally that upsets me a lot. I am very happy to be home again, but I did not expect the fears to remain that long.

Happily I’m getting more and more grip and feeling back in my body, my ribs start to feel like ribs again instead of plastic or “flubber”.

What is also annoying is that I’m not tasting anything. We are not sure if it is because of the medication or radiation. Every day I have to figure out again what I do taste that day, to me it feels very annoying towards the rest of the family. One day I taste everything inside my tortilla, while the other day I can only taste the flavor of a “kroket”.

Every day is a new battle, every day I feel mentally much stronger. But I’m not there yet. We will get there; step by step, but it will take a very long time.

Shymo Bestraling

Shymo’s blog: radiation therapy

24-07-19

I had radiation therapy for the fourth time today. It was a long day but it went by just fine, without any problems. As of today, I’m allowed to reduce my medication dose (we’re talking about forty pills) and I expect to feel a lot better then, mentally. Physically, I’m moving forward rapidly; I can make a ponytail in my hair, paint my nails, cut my own dinner and I tried to pluck my eyebrows. As a result of being hospitalized for a week, I almost couldn’t move my right arm. I couldn’t even shake someone’s hand. Well, look at me now!

I already underwent radiation therapy twice for my bone marrow so I knew what to expect. My father and I are a great team with this kind of stuff, so that makes it easier too. When your brain undergoes radiation therapy, you get a fitted mask on your face. That makes it hard to breathe and you have to lie down for approximately fifteen minutes. I’m sure not everyone can handle that, especially when you’re claustrophobic. I have to undergo radiation for another six times during this treatment. I’m glad I know how to respond in situations like these. Let’s do this.

A lot of people don’t know that during radiation therapy, your torso has to be bare. Since it happens so often already this doesn’t bother me anymore. You should know how ‘exposed’ I already am! It is all for a good cause though. And I have my boyfriend Siem, who reminds me every time that I ám beautiful and that raises a lot of love in me.

Shymo’s first blogpost

Hi everyone,

From now on I will make use of the opportunity to start blogging on the website. The last period was not easy, you could say that I have been through a lot, more negative than positive. I recorded these moments. I will try to write as many blogs as possible about the things that happened to me the last couple of weeks, but also about my daily life. Also I want to tell you all about the setbacks that I got because of my illness and all the emotions that come along with it.

15-07-19

Unfortunately I have some bad news. Since Thursday I have been in the Princes Maxima Center in Utrecht. I had a fever and a lot of pain in my stomach and back. De doctors gave me strong pain medication and ran a lot of tests. They keep me connected to the heart monitor. I came there with the thought that I could go home the same day, but this was not the case. As of today, when I finally started to feel better, the results of the MRI came in. All tumors have grown. In the US is the solution, but it is still not sure if I can go there. It is necessary that I get that solution. So a foundation has been founded, of which the last details need to be sorted, after that we can start raising money. To either become able to go to the US, or purchase the treatment and bring it to the Netherlands. Tomorrow there will be a meeting about plan B (to start another radiation treatment) because the growth needs to slow down, otherwise my condition will get worse very quickly. No I need to rehabilitate from all the esketamine they gave me in the hospital, so hopefully I’ll be back to normal pretty soon.

19-07-19
Hey all,

To give you some more clarity. My right hand is not responding that well anymore because my paralysis is getting worse. I’m trying to answer as many messages as possible, but that takes a lot of energy. I just got home since yesterday from the hospital, but I still feel quite bad. Fortunately I’m home, it was like hell in the hospital, even though the people there were really nice and the food was delicious. Five nights of crying because at one point the certainty, hope and courage were all taken from me. I went to the hospital just for pain, but left with an even worse paraplegia.

They convinced me heavily to get radiation treatment for ten days, so as of today I started with that. The doctors want to give me the radiation treatment in such a way that it would be possible to get another radiation treatment in the future if needed, and they believe that this will work. For now I have to recover a lot but in the meantime I have to go to Utrecht every day…

The last few nights I slept very well in my own bed, fortunately. The amount of support that I get with donation feels bizarre. But I appreciate it enormously. As well as all the love that I get from my family, friends, Siem and all of you of course. This week feels unprecedented. But for the rest I still feel like a dishcloth, so hopefully I will feel better soon. If you have questions for me, don’t be afraid to ask them, but do know that most information is available on the website and social media.

Lots of love, Shymo