Hoe nu verder post

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!

Bootcamp voor Mo

Bootcamp for Mo

Bootcamp for Shymo: she can’t do the sports herself, but she is definitely stronger than all the participants combined

It is safe to say that Shymo has become an understanding by now in between the boundaries of the Zaanstreek (the area Shymo lives at, bordering Amsterdam). Even though the foundation Help Mo Nu! Is just yet existing for eight weeks. You only have to walk into a random store and you will notice traces leading you to the one and only Mo. And even more, you can not think of something that is not being organised by the community with only one purpose: let the counter on helpmonu.nl rise as quickly as possible. On Sunday the 15th of September, it was up to Shymo’s gym, the SMC in Zaandam, to collect as much money as possible for their brave sportster. The form in which they have cast it was a real bootcamp, through which they raisen an amount of 732,45 euros.

“Before I got my disease I did dancing, not this kind of stuff”, Shymo says smiling while she is looking at her friends and family getting tired out in the bootcamp. “When I am going to the gym here, I’m doing a lot of boxing. I has become my new favourite sport and besides that you are training almost every muscle with it.” Having Evi (a friend) and Charlotte (her sister-in-law) by her side, she seems to enjoy herself easily while watching the bootcamp. “I expected it to be hard for them, but this is way more of a challenge than I thought it would be. Fortunately they’re still smiling.” Approximately forty sporty people have come to their feet, with the primary intention to collect money. “But the most important thing today is, I think, that everyone is having a good time”, Shymo says without a second thought. Due to the consequences of her disease (amongst other things a paraplegia), Shymo is moving herself around in a wheelchair nowadays. She cannot participate in the sporting activities organised on behalf of her. “Of course I feel sad about that”, she explains, “but I do have the feeling that I’m one of them at the moment. Honestly, I am feeling part of whole in every event that I have been to so far, and that is worth something as well.”

If we talk about Shymos endless positivity, as a human being you could only feel a indescribable admiration. Well, you could also be very jealous, or you may be incredibly surprised about it. “I really never met a personality like Shymo before”, says Margreet. She is one of the participants in the bootcamp and also Shymo’s’ mother in law. “That is not something I have been realising since she is ill. No, not at all. I know Shymo way longer than that, she lives only 50 meters further in our street for years now. Shymo was known for that amazing personality I’m talking about far before the cancer came knocking on her door”, says Margreet. As Siem his mother, Shymo’s boyfriend, she is very thankful for the fact that she can stand this close at Shymo’s side in her fight. “How she and Siem are taking care of everything is really admirable, but I’m also very happy that I can sometimes help out as well. The families are keeping themselves kind of behind the scenes when we are talking about the foundation. Particularly in the daily life we are trying to help out the family and especially Shymo as much as possible. Sometimes only walking the dog could be of great help when the whole family has moved to the hospital to be there for Shymo.”

Unfortunately, Shymo’s situation at the moment is not as positive as she is herself. “What I find the most difficult thing to accept as a mother and a mother-in-law, is that Siem and Shymo are turning into adults so quickly this way. There are so many moments when I’m thinking: guys, you should be at a festival right now. But at the same time, I can see that they are so incredibly happy at the moment and in their own way they’re making a festival out of life. Only in a different version than most youth nowadays, for example in the shape of a cup of coffee at Aloha (Shymo’s favourite beach restaurant), or a glass of lemonade on the balcony.”

This active Sunday afternoon we can frankly call a successful Sunday afternoon, for Shymo as well as for her family and friends. “For now it is really waiting for any news from America”, Shymo explains. “For everyone, to be honest. As soon as we are getting a green light, I am heading off to Washington. Every month, where I will get four pills everytime I come there. That is one for every week. ” When the bootcamp ended, there was waiting a heart-whole surprise for all participants. Jolanda van der Meulen made, together with her kids, the first original MOdailles from 3960 beads, 72 rings and 72 little buddhas. Shymo took the first, because of course she can call herself the winner of the day. Or actually the winner of the year. Because Shymo, you are so unbelievable decisive, inspiring, beautiful and incredibly strong. If your mental strength could be turned into physical strength, you would probably be participating in the world championship boxing next year. And I think we are all perfectly sure: that stupid cancer is never going to beat your cast-iron personality.

By Fleur Grandiek

Emma's Uitleg

Emma’s explanation

Hi,

My name is Emma and I was the biology teacher of Shymo when she was a student at ‘het Zaanlands Lyceum’. In Shymo’s story you can read that the cells of Shymo’s tumor have a mutation called H3K27M. In this blog post I will explain what this means and how this mutation probably caused Shymo’s tumor.

To understand what the H3K27M mutation means, we first have to look at what a mutation is. Our bodies consist of around 37 billion cells. Each cell has a nucleus that contains DNA. Your DNA is also known as your genetic material.You got half of it from your mother and the other half from your father. The DNA from one cell can be compared to a “cookbook” because it contains the instructions, which are called genes (“recipes”), for what a cell can make (“bake”). With the instructions from one gene (“recipe”), a cell can make one protein (“dish”). Each cell in your body has the same DNA (“cookbook”), but because not every cell has the same function, different cells can use different genes (“recipes”) to make different proteins (“dishes”). When a cell does use a gene to make proteins, this gene is said to be active. When a gene is not used by the cell, it is inactive.

A mutation is a change in your DNA. A mutation is not necessarily bad, but a bad mutation can have very harmful consequences. An example: the recipe that you use to make an apple pie is probably different from the one that your neighbor uses (one recipe has mutations compared to the other recipe), but both apple pies are tasteful. But if you are going to add chili powder (a bad mutation!) the end result will probably not be as good…

The mutation that the cells from Shymo’s tumor have, is called H3K27M. Let’s find out what this means. The DNA in one cell is 2 meters long. For this to fit into the cell, the DNA is very tightly wound around little balls of protein. These protein balls are called histones. Histones consist of 4 different types of proteins and one of those is called H3. The cells of Shymo’s tumor have a mutation in the gene (“recipe”) for the H3 protein (“dish”). Cells that have this H3K27M mutation make both normal, good H3 histone proteins and mutated, bad H3 histone proteins. The bad H3 proteins do not function properly themselves and they also block the good H3 proteins from doing their job.

So what do these H3 proteins normally do? In a normal cell, histones can get certain marks. Some of these marks make the DNA wind slightly tighter around the histone balls, while other marks make the DNA wind slightly less tight. When the DNA is wound more tightly, the cell can no longer use the genes (“recipes”) on this part of the DNA (like the pages of your cookbook are stuck together). These genes will then be inactive. On parts of the DNA that wound less tightly, the genes will be more active, which results in more protein being made.

Scientists are not yet completely sure what the effect is of the H3K27M mutation. Based on their research so far, they think that the bad, mutated H3 histone proteins cannot be marked properly. They also think that the bad H3 proteins prevent the proper marking of the good H3 proteins. Without the right marks on the H3 proteins, the DNA will be less tightly wound in certain places. This causes some genes to be more active than they should be. This, in turn, can cause the cells that have the H3K27M mutation to divide more often. For each cell division, a new copy of DNA must be made, to make sure that after the cell has divided itself in two new cells, both new cells have their own copy of the DNA. While making a new DNA copy, mistakes, or mutations, can be made, just like when you make a spelling error while copying your apple pie recipe. The more a cell divides, the more mutations this cell can gain.

The H3K27M mutation was probably already present in Shymo’s cells when she was still very young, maybe even when she was still a baby (although I don’t know this for a fact). or 16 years, the cells with this mutation could have too many cell divisions, gaining more mutations each time. This way, one of the cells in Shymo’s spinal cord gathered exactly the wrong combination of mutations, that together caused this cell to become a cancer cell. When Shymo was 16, this one cell had grown to a tumor. You can read what happened next in Shymo’s story on this website.

I hope that reading this blog post helped you understand what the H3K27M mutation means. If you have any questions, please let me know!

Source of information: https://www.nature.com/articles/s41467-019-09140-x#Sec9

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.

Mo en Evi

With Shymo to physiotherapy

Before Mo’s hospitalization a few weeks ago, I picked her up every Monday to go to physiotherapy. Physiotherapy is really important for Shymo. It’s the moment for her to have a nice workout and warm up her muscles. I often ask her if she’s excited to go and the answer is always “YES!”. Not everyone would be this excited to have a heavy workout like this, but Mo really enjoys it. Also, the fact that we go together makes it a lot more fun.

Mostly, we are in the car by 9:10 and drive to SMC Fitness in Zaandam. We always get a warm welcome, because everyone there already got to know Mo in the meantime. Mo always starts with cycling. Because Mo can’t use her legs herself, her therapist will hold them in place on the exercise bike so Mo only has to make the cycling motion. Mo told me that she loved to cycle before she became wheelchair bound, so this way she gets to experience it a bit again.

Shymo’s physiotherapist is really sweet. We couldn’t have wished for a better help for Shymo. She always does her best to make it as comfortable as possible and helps Shymo the best she can. She even put a large donation pot on the bar!

After cycling, Mo sometimes trains her arms on the fitness equipment or she goes to the treatment room. In the treatment room Mo always starts with stretch exercises for her legs. After that, it’s time to sweat. Sometimes she trains her arm muscles and her abs. The exercises Mo does are really tough. I’ve never seen anyone workout this hard!

When the physiotherapist leaves the room, Mo and I have to work together on exercises. There is an exercise where Mo sits on the bench and I put out my hands one at the time and Mo has to tap them while she stays upright. It sounds like a simple exercise, but for Mo this is really tough because it is difficult for her to keep her back straight and sit still like that. This exercise is always fun to do together, because I can really encourage her and see her winner mentality up close; she really wants to do well. Of course this exercise doesn’t always go smooth, but that is not Mo’s fault. Often it’s because I say something Mo has to laugh about and then she loses her position. The two of us always have to laugh about this.

When the physiotherapy is done, we often do something fun. Grab a lunch on the beach, get a Mcflurry at McDonald’s or eat a sandwich at the local deli. Our Monday’s are always really fun days where we can chat and laugh with each other. Not only I find it really fun to tag along, but I really like to help Mo too. I can’t cure her, but I can be there for her as a friend and support her with things as physiotherapy.

Dear Mo, I hope you’re feeling better soon so we can go to physiotherapy and do all the fun outings together. I love you.

Big kiss,
Evi

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?

Mo en Siem blogpost

Siem: “Mo is the strongest woman that I have ever met”

I’ve been Mo’s boyfriend for a year and a bit now. A year in which a lot has happened. Having a girlfriend with a severe disease can be tough, but Mo and I are still having a wonderful time. I truly enjoy it and am learning so much from Mo’s perspective of life.

Fight, never give up and always have fun is what she taught me. It is only some of many things and I apply these lessons to my own day-to-day life. I am so happy that we are together! Shymo and I have known each other since 2015, before she got sick. rom the first time we met we already had a connection and we never lost contact. I’m glad because she is my true love and I already knew that at that point. But then Mo heard that she got sick and everything changed. This event and the loss of functions in her body was not good for her self-image. “No one will like me like this”, was her thought. It became my goal to always be there for Mo. Often people ask me: “why a girl in a wheelchair?” Because I love her, no matter what. She believes so as well and together we are capable of anything!

Our daily life changes constantly. I help Mo with her daily routine: shifting and moving her, showering, shaving her legs… you name it. Together with Ilonka (her mother), Ruud (her father), Zyara (her sister) and her brothers we are a strong team that takes care of Mo. Ruud and Ilonka took me into the family this year and treat me like one of their own. I feel at home and welcome and am really grateful for this. Together we ensure that Mo’s life is as normal as possible, she deserves this. Mo is kind, beautiful and the strongest woman that I have ever met.

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!

Blogpost Zyara

Through the eyes of a sister

Shymo, my little sister, my friend. We would have thought that you of all people would become sick? And why you? This disease only happens to people that had a long life already, right? And how will this continue? Will my little sister always remain in a wheelchair or will you be able to walk again? These questions often go through my mind.

Mo, two and a half years ago we discovered that you are sick. It seemed so innocent but look where we are now. This is so mean and it sucks. The bond that you and I have is what all sisters should have with each other. We could do almost anything together: shopping, go out for a coffee, to the beach, festivals and parties, or sell our clothes at the vintage market; I can keep going like this for a while. I am so happy to have you as my sister. Yes, I dare to say that I cannot wish for a better sister than you!

The day that I heard you have tumor, I was in Malta. My first week out of the ten that I had to be there. My world collapsed; I wanted to go home, be there for you, join you to the hospital, watch movies together… But you told me to stay in Malta and have fun. “You went there for a reason and we can facetime every day” you said. So I stayed. You were right, but it felt weird.

I don’t say it out loud normally, but I am having a very hard time with this situation. All those setbacks every time are like being hit against the head with a frying pan. But then you, the strongest person I know, say “screw them, I am not giving up!”. And then I think “Yes, Mo does not give up! We go for it”. And that is how you drag me through all this drama.

Mo, you are the strongest person that I know. So down to earth but at the same time fully aware of what is happening and the risks that are involved. You always want to make the best out of a situation, have fun and stay positive. Because what is the added value of being sad? It won’t make you feel better. Your mindset is something that a lot of people can learn from.

Sometimes it is tough. Because I want to do stuff with and for you. But lately you are very tired and not feeling that well, which is because of the medication and treatment that you currently get. That is when I often realize that you are sicker than you actually look like. That is a compliment Mo, because even with all of this going on, you still look really good. And look at everything that you are still getting done even while you are feeling so bad. That is amazing, it really is.

The only thing that I still want to tell is that I am very proud of you, of everything that you do and how you are doing it. You are an amazing person.

I love you.

Lots of love,
Zyaar

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.