Elke dag dinsdag

Shymo’s blog: everyday it’s Tuesday!

19-10-2020

We had such an amazing week. I have seen a couple of friend and since the weather was wonderful we sat outside. There were also some amazing meals (mom’s food is always good) and we watched some movies with the family. But today it didn’t go too well, as I woke up with a terrible headache. Fortunately the paracetamol works but also other things are not going as it should be. Because of the tiredness my emotions are mixed up and I get sad. We decide to cancel the visit but to go through with physiotherapy. Cancelling a visit is never nice. But also last weekend I already felt a bit confused. On Saturday I had a moment where I thought “what should I do with myself?!” On Sunday my brothers always come over to have dinner in the quarantine tent and I asked everyone “at what time will Gyl and Yer arrive?” to which every time the answer was: “Mo, it’s Saturday” and then I said “oh how strange that they are coming over on a Tuesday then!” during the day I asked this about another five times to which I got told that it’s really Saturday. After all those times in the afternoon I said “but it’s Tuesday?!” and everyone was just looking at me and I said: “alright, if I mention today one more time that it’s Tuesday I’ll shoot myself through the head!!! To which we started laughing out loud! It’s not funny at all but at that moment it was. Next day I’m feeling much better. Some guests are coming over and also my physiotherapist arrives in the afternoon.

Regularly I speak with my parents about the situation and how I’m feeling, actually about how we’re all feeling. My mother always tries to cheer me up by mentioning positive things. For example, that my brother told that the previous blog post has been read over 1300 times on the first day and even more than 2000 times during the same weekend!!! “Nooo that many?!”, I said. So I tell my parents that not that many people are responding compared to how many people are reading it. So I have a lot of ‘sneaky readers’! and I was laughing out loud because of my own joke and decide that it deserves a spot in the dictionary, haha.

21-10-2020

It’s 21 October, which means that it’s my dad’s birthday. Like every year we bought him tools. It always makes him very happy and we’re having cake and two friends are visiting in the tent. At night my temperature increased and my blood pressure was low. The next day it’s still the same, so we get in touch with the hospital. Probably the adjustment of medication is the cause, so we are keeping a close eye to it. When I bit later I mention that I’m really tired and that I can’t ‘carry’ my head we are all getting a bit scared. They let my lay down in my chair and I fall into a deep sleep. As soon as I wake up it I’m all good again. Next we have three good days. Such a joy, really! Saturday my bestie Mirte and her boyfriend are coming over for lunch and Sunday evening my brothers will come over for dinner in the tent. So nice to be around each other for a moment! For a moment there is a slight panic when I say “mom, I’m smelling something strange”. If I get an epileptic seizure in this stage of the treatment that would be a bad sign. But fortunately mom smell the strange smell as well, so no epilepsy! Damn, that was a heartbeat of 180 but fortunately it was only some smoke from the wood stove.

Regularly we got told by people that are close to us that the messages that they get about me are a lot tougher, worrying and often so intense and sad than they read in the blog. That’s true, because there are certain levels. You have the family, the people who nurture me and are with me during all the conversations with my Oncologist. Those people know everything as they are with me when it happens. Then we have the second level of people that are close to me; they get a direct update after for example our talk with the Oncologist. Then in the blog there is a milder version. “Why?” people wonder. Simply because I also have a private life and we are already sharing a lot. No one is waiting for details on how a person with a paraplegia and bedsores all the way to the actual bone of my spine, needs to be nurtured for 24 hours a day and the impact that this has. For example, when taking care of my wounds we hear ‘boink’ on the floor sometimes. Yup, that’s my mom passing out. We can go on like that. It is what it is. We do provide the donors and readers good and honest info, but we’re not getting into every detail.

27-10-2020

How do you know if I’m doing well? That is often asked but probably the hardest question to answer, since it can be different any day. Mostly when I’m feeling well I have a lot of songs in my head and start to sing multiple times that day.
What I remember from being little is that we as a family listened a lot to BLØF and De Dijk in the car. That went a bit like this: “can the lights be turned off?!” “NO!”. That holiday was also my first youth trauma, as we had ‘the best of De Dijk’ on repeat for like 16 times in a row. Or “you are a jammouth that whines but you don’t know whatskeburt!” Huh Mo, did you say jammouth? That’s not a real song?!” Mostly the proof is being checked on Spotify.

How do I get through my days (happy)? Sitting or laying down, as my legs are not working anymore. For a while my arms were also not working, but I am feeling some improvement, probably because of the radiation treatment. I do hope that some functioning will come back in my left hand so that for example I can use my phone, brush my own teeth or eat by myself. Try having your teeth brushed by someone else, simply said: it sucks! Currently I am very dependent of others, for about everything that you can think of. I still have to get used to that and sometimes I don’t ask things as I don’t want to constantly burden the others.

As a family we are also running the webshop: littlelovebird.nl. We sell jewelry (some are home-made), clothes, bags and many other things. It became a family project so that I can join in as well. Before I got sick, I spend a lot of time on it as it is a hobby. Therefore my plan was to follow a study related to fashion. No I’m just delegating tasks here at home about what should happen. Be aware that even that already costs me a lot of energy. So during the daytime I nap for a couple of hours.

28-10-2020

Today should be an exciting day. Someone is coming over to measure me for an electric wheelchair! I have been super excited for days. Unfortunately the day starts bad, since I have a terrible amount of pain in my neck, shoulders and upper back. I think it’s muscle rheumatism. WHY?! It really pisses me off! What are we going to do when that person arrives…? First the regular morning ritual. After my medication and some food the pain is reducing, but results in a terrible tiredness. What a struggle with my own body. At 10:00 that person is coming over and now I’m looking up to it. How am I going to explain what I would like? We are not aware about what is and is not possible.

Fortunately that person knew exactly what he was doing, the friendliness and passion is present! He is very patient and explains a lot, but in a nice manner which is not exhausting me even more. Fortunately we discussed with the family beforehand, so eventually we succeed to produce a tailored wheelchair. This man made my day and afterwards I’m feeling a lot better. If it goes on like this I’ll even outdrive Verstappen!!

30-10-2020

Today we’re going to the hospital. But how, we’re wondering. Yesterday we spoke with the pain team of the hospital and increased the dosage. I haven’t ate yet either. Alright one bite of banana… So, what’s going to be the plan? Because with this amount of pain I cannot be carried in to the car. Slowly I start to realize that I cannot go to the hospital like that. My dad calls the PMC and explains the situation.
We are going through the notes of last week and notice that the pain continues to increase. It is mostly rheumatic pain, headache and pain in the stomach. Also breathing is not going well. Eating has not been possible since this morning. Belches and puking are also torturing me. At 13:00 the Oncologist calls and mentions the notorious P as a solution, what a surprise… Damn Prednisone, but as expected. Next week we’ll go to the hospital for all the checkups. As we speak my dad gives me the Prednisone and I should start feeling better in about four hours. And as I always say, Prednisone is my best friend but also my worst enemy (fortunately in this case my best friend).

05-11-2020

We had such a good week, unbelievable. Not only with fun things but also progress. I have places on my body where I feel something, am able to flex some muscles and require less sleep during the day.

Last Tuesday I was alone with my mom and we turned the speaker on. We choose BLØF! At the song ‘what would you do?’ my mom says “this is their best song!” I put the song on repeat and we’re both singing LOUD “wat would you do” and then “oooooohooooohoohoo!” We have the biggest fun and are both happy. Fortunately no one could hear us because we sound terrible. But then Zyara and Siem arrive and tell us that they could hear us even outside, haha oops! Ah well, I hope they enjoyed.

I’m also exercising more often and more intense this week since I really want to make progress. When the physiotherapist arrived today I said “huh?! On Wednesday?” Of course everybody started to laugh, “today it’s REALLY Tuesday Mo!” I also enjoyed all the visits this week, which are coronaproof of course. A whole week with lovely weather, amazing!!

06-11-2020

Last night I woke dad at 04:00, but was not sure why. On top of that: I completely forgot why. Dad told me that I should try to become a bit calmer and get some more sleep. That worked, but at 05:45 I woke my dad in an angry manner, which is not something I would normally do. I told him that I should be carried over from the bed to the chair. Dad got my mom and together they carried me over to the chair. I told them I could not see clearly, but at that moment I fell asleep and my parents decided also to have some more rest. From that moment I only know what happened as how it has been told to me. Therefore the following has been written by my mother:

At 08:00 Mo is still in a deep rest, we notice here breathing, which is not as it should be. She sleeps straight through the morning rituals and at 09:00, when we actively try to wake hear she doesn’t respond. We have to go to the PMC at 10:45, but how?! We call the Oncologist to discuss. He is afraid that the situation of Mo is getting worse. Huh, how? It was going so well, did she maybe have an epileptic seizure? He wants that homecare and/or our family doctor comes over to have a look. We have to get a clearer picture to make a plan. Homecare arrives quickly but Mo still hasn’t woken up. Strangely she is responding in some manner. Sugar levels are being checked, as well as saturation and temperature but this all seems to be at normal levels. Blood pressure: far too low in combination with a very high heartrate. The oncologist called again and says that the family doctor has to come over to decide if Mo should be taken to the hospital by ambulance for investigations. At that moment I call my sons at their work that they have to come over right now as we don’t know the outcome of this. Meanwhile the oncologist says, “give her 40mg extra Prednisone, if she responds well we’ll know how bad it is”. The family doctor arrives and Mo seems to wake up because of the Prednisone boost. We go through things, also how last week went. Conclusion: it seems very probable that it has been an epileptic seizure. Alright, breath in and breathe out. It’s getting calmer again, pfff! Mo starts talking with the family doctor and we are calling the Oncologist. When the family doctor is checking how awake Shymo is he starts asking questions. “Do you know who I am?” he asks. “Yes!” says Mo and she smiles. “Do you know your date of birth?” is the next question of our family doctor, to which Mo clearly answers, “Yes, 24 May 2000.” Last there is the ‘infamous’ question: “which day is it Mo?” “Tuesday!” says Mo. “No it’s Friday,” says everybody smiling. It is another Tuesday. The family doctor thinks that the treatment might resulted in an inflammation of the tumors and that this resulted in an epileptic seizure. Mo wants to eat, but first a glass of orange juice. The boys and their girlfriends arrived, good so first we get them up to speed. Everybody feels relieved. I ask Mo if she wants a Cheese sandwich since she likes that so much. To which I get a strange answer, which was: “I want fries!!” We were laughing and she got her fries! So halfway through the day it eventually started to normalize again. Our sweet Mo is back.

07-11- 2020

After this hectic Friday we go into the weekend. I tell that I don’t remember that much from yesterday. My family fills the gaps, through which I start to remember things. For example how sweet the person from home care was and that when our family doctor arrived he immediately yelled: “Hey Shymo I’m here!” and that it gave me a lot of energy. “It’s such a sweet man,” I say.

The Saturday is spend on sleeping. Fortunately when my best friend arrives with her boyfriend I feel a lot better. Still only at dinner I start to feel awake for a moment. Am I going to tell you again that my mom is a really good cook? Absolutely. Because we had such nice meals again, really enjoying it! Also the cake from Jaap en Suus Brakenhoff!!

At Sunday I’m still terribly tired and because of that I’m not capable to join my visitors. I’ll just have another nap and then we’re talking about hours. At 16:30 my brothers and sister in law come over for dinner. We are all enjoying mom’s pea soup or “snert” as we call it here. We all have some of cake as dessert to finish dinner well.

Lately we are catching up a lot of memories. I think because of the quarantine because we don’t experience that much anymore. “How did that rhyme go again,” I ask my mom “and that you were ‘drawing’ something at the inside of my hand at the same time?”
“The moon is round, the moon is round, two blue eyes, a nose and a mouth. And my mom has a big..” To which I say: “ASS!”. Ah memories, we are going to make many more!

11-11-2020

Today another hospital day. I haven’t been for a while so I’m actually looking forward to it, since I see it as my weekly trip. When we are in front of the desk we spot almost all of my favorite assistants. They have been celebrating something because there is a box with muffins arriving. They ask me if I want one as well, or ask if eating is not possible for me today. I’ll have one! And we’re all laughing again. They always cheer me up, even when I’m feeling super bad. Having all these kind people around me really gives me a lot of strength. Next a blood test and replacing the probe. Replacing the probe goes wrong twice, so we’ll try the other nostril. It barely goes but eventually they manage. “Are you alright Shymo?” asks the nurse. I’m always good at putting my emotions beside but this time it was very hard. When the probe is in it seems that my voice is gone. I found this to be very scary and at such a moment it is hard to avoid becoming emotional. When I left the nurse I found it very sad for her. She was doing her best and it was not her fault. My suspicion is that my left nostril is smaller than my right, ah well. Then, when we’re going to the ECG-room, I notify my parents of they can get closer. They response is: “Huh, WTF she cant talk!”. For a moment we are afraid that the tube is in my air pipe or that my vocal cords are pierced. After the ECG I’m dead tired. I can lay down and the Oncologist arrives. He is very resolute: “that probe has to go right now!” Fortunately I was able to talk right after the probe was removed. After that we went back to the Oncologist to finish our conversation. He is happy to see that I enter the room talking, but bad news never comes alone, always in three. My blood values are very low and my Oncologist is also not happy with the outcome of the ECG. The dosage of the treatment has to go down and also no thrombosis medicine for the moment. We discuss some things and head to the treatment room for the probe. I choose my right nostril, where the probe was before as well, with the hope that it goes well in one go. They succeed in less than a minute; this has to be a world record! We need a moment to catch our breath and are driving home full of good courage.
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Vijf voor twaalf

Shymo’s blog: It’s five for twelve

As some of you probably already know I stopped with the most recent treatment and I have also finished radiotherapy by now. My biggest hope of course is that my arms will recover. At the moment I can do barely anything… Therefore I have written this blog together with Siem and my mother.

17-09-2020

Today we start with blood tests, to end the treatment. The nurse is meeting us in the waiting room of the MRI to fill up the tubes. What I find very relaxing about the MRI is that you can pick if you want to watch a movie, listen to music or just silence, but the sound of the MRI is so loud that there actually is no silence. This time I decided to watch Shrek (part one remains the best). After the MRI we have a good hour before we have to go to the next appointment. We decide to have a sandwich in the hospital restaurant. It seemed to go well, but after five bites I tell that my hands starts to act weird. Then the tingling moves quite rapid to my shoulder. The three of us thought the same “there we go again!” It gets worse and worse, I become confused and can barely talk. I was talking with a twisted tongue and we decide to use the anti-epileptic spray. That is a nasal spray which really burns in your nose, pffff. Almost immediately tears are tearing down my cheeks, because it hurts that bad. I want to sleep but sitting straight up in a wheelchair that is not possible. Multiple times I slip away due to the tiredness. After twenty minutes my dad and I go the UMC to measure the mask and to get a CT scan. The mask still fits, which is good because then I don’t have get a new one fitted! At the end of this long day I’m finally having the CT scan. Monday we will start with the radiation treatment which is quite soon and we are hoping for positive results.

18-09-2020

This morning I was laying in the sun and really enjoyed it. It was so relaxing! But after a while I said something which was not very clear. Mom asks me if I’m having an epileptic seizure. I tell her that’s not the case, but after a while did get confused and talking became harder. I wanted to get up and sit and dad had to hold me firmly for that, but it was too hard and eventually I pass out. When I recovered from that my dad tried to put me in my wheelchair but I pass out again.

That same evening the oncologist calls with the results of the MRI scan. Multiple spots have grown, also the spot which is causing the epileptic seizures. Next week we’ll start with radiation treatment. I’ll possible be hospitalized for five days.

22-09-2020

Today I’ll be hospitalized in the PMC. I don’t feel too well so I’m not looking forward to it. Fortunately I only have to go for radiation treatment. At least we don’t have to drive up and down five times to Utrecht, however listening for an hour to Queen in the car is not bad! At home we have made the agreement that mom always stays with me when I’m hospitalized. Still dad visits us every evening. We think it will be five calm days (yeah right, we think!). I know many people at the hospital who always drop by for a chat. I doesn’t matter if it’s a doctor, nurse, cleaner, someone from the food trolly or anyone else from the staff, we always have the greatest time. But the first day does not go that well. I’m not feeling well. I have a lot of pain from the radiation and I’m even getting a fever. Yesterday I did get dexamethasone, that helped me during the day but it didn’t get me through the night. Today the plan was to start with prednisone, but for now I’ll have to stick to dexamethasone (which is even more fun…). And as cherry on the pie they also add tramadol to that. All in all it’s good that I’ve been hospitalized, because everything goes at a much faster pace.

As usual I had a conversation with my Oncologist. Softly speaking, it was shit. He is shocked by how much I have deteriorated in a week. It doesn’t match in his mind, based on the results of the scan (a bit of grown), with how bad I’m doing. We hope that the radiation treatment will result in a lot of positive development and we keep hoping for a new treatment. We are so done with this stupid cancer. When is it finally enough?!

Every day we race with the bed through three hospitals to get to the radiation treatment room. Also the staff who joins me always makes sure I feel comfortable. The team of the radiation treatment always take their time to position me well; an exact task where nothing can be left to faith. The radiation treatment itself fortunately doesn’t take long. Only the mask that they fit over your head doesn’t feel comfortable, but I’m not claustrophobic. For the rest I endure it just fine! Mom tells me that every time when she has to leave me in that room she thinks about how proud she is of me and that I’m strong. People are impressed how I’m going through with all this. The days fly by and after the radiation treatment I’m on my way home.

26-09-2020

This is a “you-better-sit-down”-message. I have been thinking since yesterday how I’m going to tell this. Yesterday I had my last radiation treatment after which we spoke with the Oncologist about follow-up treatments and future perspectives. In my case the future perspectives are often, hopeless, negative and just shit. And then I’m still putting it mildly. Meanwhile almost four years have passed. Four years ago I started walking badly and so my first problems were noticed. After investigating, about six months later, we got told that I have cancer. Aggressive, malicious, fast growing and also rare. The fact is that no one has every survived this; I am the longest living so far. We have also heard over a hundred times that there is no cure. And what is especially bothering me is that a lot of things were the last time. Like cycling, walking, going somewhere spontaneously, chilling with my friends and laying in bed with Siem. You keep thinking that these things will come back but you can’t assume it. And still I’m enjoying life to the fullest.

The Oncologist will have a conversation with our family doctor, the comfort team and homecare. I asked the Oncologist why but I did not get a straight answer. This gives me the feeling that I’ve entered my last weeks. I cannot explain how that feels. Still I get back to my sentence: “giving up is not an option”, which makes him smile again. To that he responds with: “I think we all know that Shymo”. He expresses his admiration and respect, which makes me feel well. I told him I’ll do whatever it takes and will try any experimental treatment. He is my hero and I told him. Everyday there are still new solutions, trials and results coming in, so there still is hope! Most people have eleven months when they get my diagnose and every time they confront me with that I tell them that I’m already living for four years with this. They call it a miracle. But an unusual case calls for an unusual solution. Meanwhile we discuss a new type of treatment with the Oncologist. “I want to go for it!” I say, when they were discussing the risks of the treatment. The Oncologist grabbed my shoulder, looked me in the eye and said: “I’m with you”.

02-10-2020

Today is a good day as it’s my oldest brother’s birthday! I have a nice surprise for him: we start to notice small improvements and we assume it’s because of the radiation treatment. My right arm can move a bit up and on my left side there is a bit more improvement in my fingers. I also notices little spasms but of course this comes together with sore muscles. And you can guess… I’m terribly tired. It would be so nice if I could be on my phone again for a bit, but for now that’s not an option. On 30 September I stopped with the prednisone. Eating and drinking is going well but the expectation is that it will get less again over time. That’s why I can pick whatever I want to eat. That’s why I can pick whatever I want to eat. And I don’t mind that at all! Think about moussaka, endive with mashed potatoes, chicken… actually just anything that comes from my mom’s kitchen, because she is an amazing cook.

05-10-2020

As of today I’m making big progress. How come…? Even the Oncologist says “something with a capital P” (Prednisone, of course). But Tuesday I could even meet up with some people in our quarantine tent. For Wednesday we have planned a conversation with the Oncologist, family doctor, the comfort team and home care. The goal of the conversation is to discuss for when I need more caretaking in the future. Then that’s sorted and everybody has their tasks. Meanwhile there is a high-lowbed and a hoist at home. Fun is different, because you don’t want these sort of things.

We had a good conversation on Wednesday (despite the topic) and we have more clarity. I’m never allowed again to have a full weekend of pain. Afterwards we discussed with the family how lucky we are. We have an intense committed Oncologist, a lovely home doctor and such sweet people of home care and the comfort team. Today we have started with a new experimental treatment and we are curious what it will bring.

08-10-2020

Today I’m more tired than the last recent days, but then yesterday was quite intense. It also became a habit that after breakfast I’ll have a nap. In the afternoon my physiotherapist will come over and I can’t wait to show here that I can move my arms up again.At least, for a few seconds. My training immediately becomes more intense. I don’t want to lose my arms, so we’re going for muscles! The sweetest physiotherapist in the world is very pleased with the progress. Later in the afternoon the occupational therapist came by. She had lots of tips and is doing her utmost best. I find that very special.

Since my hands are not working that well I arranged that my friends can schedule appointments with my mom to meet up. I can’t guarantee that I can go through but week is scheduled with plenty of meet ups. Siem, Zyara and dad build a tent on the balcony with a heater! Genius! Because of that we can have a coffee with the sweet people that have been supporting us and helped with for example the groceries. I want to share that we have an amazing network around us. All amazing people in team Mo, while it does continue to feel strange to say that.

Last night at about four o’clock I woke my dad. My arm fell of the chair and out of habit I put it back on the chair. So way to loud I say: “DAD! DAD!!! Look at this!” I throw my arms in the air and hear my dad say: “How great Mo!” He didn’t realize it yet of course, haha. I fall asleep right after and the next morning I give the whole family a show.

11-10-2020

There it is, I’m losing my hair. For the whole week I had an itch and pain on my head because of the radiation. To reduce the itch we combed out my hair. Careful of course because we don’t want to pull out any additional hair. I can’t be sad about it… Maybe because I’ve gone through this a couple of times now of because of the amazing wig that I got from Move Hair Solutions. And I also have worse things on my mind. We are not really thinking about what if it goes any worse. We still believe in the miracle, but the clock is ticking.

#itsfivefortwelve

moeizame zomer

Shymo’s blog: tiresome summer

01-09-20

During the ‘prednisoneweek’ I ate a lot and everything tasted great. But this story does have a downside. I immediately notice that that my body starts to itch like crazy (from the inside), as I’m holding more moisture. But as soon as I stop taking the prednisone the pain comes back. At home we read this really good article from a doctor, who did research about the tiredness that comes along with muscular rheumatism. By reading this I started to recognize some of it. But what can we do about it? Going back to the prednisone is currently not an option for me. My oncologist and I came to the conclusion that Prednisone and I have a love-hate relationship.

Frequently we get asked what I’m exactly suffering from. Hmm, exactly? Do you have a minute? Often this is a question asked out of politeness and people don’t want to actually hear the whole answer. So often the answer to how I’m doing is “fine”.

But still, the answer will be as precise as possible for the moment, because as soon as I’ve finished mentioning everything something else has to be added to the list. Let’s start with having a rare kind of brain stem cancer and a paraplegia, which makes me fully dependent of my wheelchair. Besides I also have a defective thyroid gland, which probably was due to one of the many treatments that I had. Also I have to deal with muscular rheumatism which is only controllable when I’m getting an injection, which cannot be combined with other types of medication that I’m taking. This rheumatism pain is indescribable and is influencing my mood (haha yes that’s possible, even positive Shymo gets angry sometimes!). And then we haven’t even started yet about the physical discomfort that comes along with a paraplegia. These are unbearable, but it does make you very creative. I also suffer from epileptic seizures and am losing the ability to use my hands. I could make the list even longer, but it won’t make anyone happy.

Sometimes people don’t know how to respond, which makes total sense and it doesn’t matter. There’s no such thing as a script on how to react. “Oh, but you’re still doing well?” and “to me it seems she’s not even bothered” are reactions that I get a lot and am totally done with. Or people who start to tell what they have gone through. Instead I prefer it that people just don’t know what to say. This should make you feel speechless right?
Most people can’t imagine what my life looks like. Even at home it is sometimes hard to understand. Even I am not sure what I’m going through. A while ago an outsider even told me that it “might be all just in my head” the puking and not being able to eat. That upsets me.

02-09-20

Sometimes before we go to the hospital I already have the feeling that it will become a weird day. Today is such a day. We had to be there at 09:00 for a blood test, but we told the multiple times that it’s too early and so we eventually arrived at 09:32 at the PMC. As it was crowded, the blood test was taken at another department. I always do this with my dad. Meanwhile my oncologist already arrived to pick me up, but had to reschedule due to the delay. At that moment I have to go to the bathroom, so when I’m there we receive a phone call from the nurse “that she lost us”. After that we could go straight through to the meeting room.

First a neurological examination. They observe that I have not lost any more of my strength, which makes the neurologist not unhappy. I also mentioned that I haven’t had an epileptic seizure for 6 days!! We are talking, options are being discussed and on Friday we have a phone appointment with my oncologist. He wants the MRI to be next week, but when growth is shown on the scan I’ll have to stop with the treatment. Without a new treatment. For now the recent developments are being processed and on Friday I hope that we’re all on the same page. That it’s not going too well as I’ve stopped with the prednisone, is a fact. But that has nothing to do with the neurological part. Again we are up against a difficult choice. Personally I feel that it’s not going well and that is also what I told my oncologist. He agrees, and I also noticed during our conversation that it makes him feel sad. It does something to him. Mom, dad and I have till Friday to decide about the MRI; coming Wednesday or in three weeks. Also my oncologist has to think about it. But if we choose for this Wednesday and there are signs of growth, the treatment will stop and there currently is nothing to replace it with. You can assume that we choose to continue for another three weeks. Because if something happens meanwhile, the scan can be scheduled in a matter of days. We want to continue as long as possible as we truly believe that it could work. And I don’t believe that after only eight weeks you can already be sure if a treatment works or not. Also a new plan has to be made for the prednisone, but my oncologist is looking for a way in the middle. For example two times a day fifteen milligrams, but then I will become the Michelin man again.
The doctor gave kind compliments; he admires how I deal with my illness. And that “I show up every week and undergo everything.” I enjoy hearing that.

09-09-20

After the euphoria of last week we had a terrible weekend where on Saturday morning it all went wrong, due to a big epileptic seizure. Which repeated on Sunday. As every week we left this morning to go to the PMC. Of course we gave notice on Monday already about the problems such as new wounds, epileptic seizures and a stomach and intestines that are not functioning properly. The dose of ‘extra’ medicine for the epilepsy is being doubled. The oncologist tells us that the epileptic seizures don’t have to mean that the tumor is growing. Any patient that has undergone radiation treatment on the head can develop epilepsy due to scar tissue. Apparently the probe has to be replaced next week (which is routine). But the problem has to be solved, otherwise we’re still stuck with it. The blood results are not telling what’s going on. So as I always say: bummer with the hat on. Multiple things are in the lab cultivating. Hopefully that will tell us something, which enables new treatments. I’m still able to eat but drinking is nearly impossible, as I almost choke right after taking a sip. So we try to maintain it through my probe. I drives us mad, that almost nothing can be done in a normal manner anymore. But we continue to hope! After almost four years something has to work right? In about a month we’ll have the result from the new MRI. Unless meanwhile something happens, but we will not assume that it will. Let’s go!

16-09-2020

Today we went a bit later to the hospital than usual. It was not a bad week. I went outside and ate BBQ with Char and Gyl and I even went to the beach. So we thought to share some positivity. But before we left this morning I had a minor epileptic seizure but it faded away soon. When we were in the car just before entering the highway it went wrong, because the epilepsy came back and was intense. Lucky us there was only traffic light ahead and there we could spray the medication. Extremely tired, not approachable and weak I arrived at the PMC. Fortunately the nurse immediately noticed what was going on. She made some calls and we could go to a room with a bed. When we arrived I fell asleep almost immediately. I didn’t notice much from the blood test and weighing. Then they came to place a second probe, a stomach probe. That was painful but they managed after ten minutes. I went back to sleep but then my oncologist arrived. Normally we go to him, which computer wise is a lot more convenient. After sharing our modest “list of the week”, came the conclusion of the doctor: this week the last time for this treatment, so end of treatment. That was a hard one to swallow… A period of radiation treatment is therefore unavoidable.

After that the nurse pops by. She came to tell us that they will take a picture, to see if the new probe is fitted correctly. Meanwhile dad gets a phone call that tells us that tomorrow at 12:15 we have to be here again, for an MRI. The nurse tells us that the probe is not fitted correctly, it’s curled up in my esophagus. Sigh… The probe is being pulled up and pushed down again. I notice that my mother is having a hard time with it. Fortunately they manage to fit the probe correctly. The info about the coming period trickles in. Tomorrow we will also have a meeting with the radiologist and the radiation mask has to be adjusted. Afterwards I’ll also have a CT-scan. Meanwhile the treatment is going through the drip and we are waiting for what’s coming next…
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Corona verhalen

Quarantine experiences from Shymo’s environment

Shymo has been in quarantine since March. By reading her blogs you have been able to experience a bit of how she experiences this and it has not been easy. Family and friends who can’t come over to give her a hug and who at the beginning of the quarantine only could talk to Shymo in front of the window with a phone. But how is this period for the people around Shymo? How is it not being able to see your (girl)friend or sister and how is it to be in quarantine to protect your daughter/sister/(girl)friend? Some of the people who have gone through this have written down what this experience has done to them and still does.

Siem

When in march the coronavirus broke out in the Netherlands and our prime minister was holding the press conference where he explained the safety measures, the door went shut at Shymo’s home. No one in and no one out. Because for Mo corona is life-threatening and fighting against one life-threatening decease seems enough for all of us. So out of the blue there was a real quarantine. I was not with Mo at the time, which meant that I could not see her. This made perfect sense but was hard to cope with. Especially because there was no clarity on how long all of this would take and when I would be able to hold Mo again. So in an instant, besides the fight to cure Mo, we got into another fight with another danger.

For safety of Mo and due to the lack of information about the virus we had to live separate from each other for three months. A couple times a week I sat in front of the window to talk. Those moments where nice, because we were able to see each other, but I also experienced these moments as very painful. The saying goodbye, not holding each other and losing precious time with each other was hard to deal with. In the life that we share it’s so important that you can there for each other and with each other. And that in an instant we were not able to see each other on a daily base anymore was very hard for me to accept; such as the moments I could not be there to take care for Mo, but especially the when she felt terrible and I could not be there.

Because of that I felt the necessity to, whenever the possibility would arrive, to move in with Mo. After four months that moment arrived, amazing! After being in quarantine for two weeks and an antibody test, we were quite certain that I did not have or already had corona. On Monday the 29th of June I moved in with Mo. It was amazing and the first hug after such a long time felt magical. We belong with each other and felt that immediately from the first second again. After an hour it felt like we never had been separated from each other. I could not get happier, amazing! Life as it is now remains complex with corona because the rest of my life is on hold. But the most important thing is that Mo and I can spend time together, and I’m always there for her. A big problem solved, which gives me a big smile on my and Mo’s face!

Ilonka and Ruud

Back to the second of March. Shymo is being hospitalized in the Princes Maxima Centre. On the third of March Mo undergoes surgery. She undergoes a biopsy. During that week of the hospitalization we get the feeling that the coronavirus is on its way. Meanwhile we’re all back home and it’s the 13th of March, Friday the 13th. The whole week it’s been about corona on the news. On the 14th of March I (Ilonka) have a workshop in my agenda. I look at Ruud: “is it wise?”. At that moment I call me friend who I’m doing the workshop with for her 50th birthday. Meanwhile Ruud calls the company who gives the workshop. We decide to go. It didn’t feel right but we had an amazing day. On the 15th of March at 19:00 there is a press conference from our prime minister. He says a lot but I’m not hearing it anymore. When our prime minister is done I hear myself say to my daughters and Ruud: “We are going in lockdown. No one in and no one out”. It’s only for three weeks, we think. I send a message to my customers, friends and family where I explain that we want to protect Mo as much as possible. Everybody, and I mean everybody, fully understands.

Soon we get stuck on practical matters. For instance, Mo has to go to the hospital once a week, fand the groceries which we get delivered once a week will continue in such matter, right? It was chaos, madness. After two and half weeks we were finally able to get groceries delivered. And even at that moment there were no cleaning products, tissues, pasta, rice, canned beans or toilet paper available. NO TOILETPAPER!!! Where do we have to wipe our … with? Often people laugh about how stocked our shelves are – just like a supermarket! – so with 12 rolls of paper towels and some creativity we managed. One friend reaches out to me and asks if I still have some pasta available? I’ve been to multiple stores but there isn’t any. Of course I say, do you want spaghetti, penne, macaroni, tagliatelle, fusilli, gnocchi or ravioli…? Oh and I also have some whole grain lasagna. To which my friend says, “ehh, anything will do”. She is secretly impressed as she goes silent. “Enjoy your dinner” I yell and I don’t need anything back because we have plenty. We also ask for help from our surroundings, something we learned when we founded Stichting Help Mo Nu! Friends went for us to the market, the neighbor across helped us with getting some toilet paper and it keeps on going like this.

The lockdown got extended and so did our quarantine. “Will we make it financially?” I ask Ruud. “Yes, we’ll manage as we won’t go on holiday this year”. Problem solved, we think. Then one of our ministers mentions that we’ll get four thousand euros. If we really watch our spending we’ll manage! “No…” says the minister with a big smile. “This is not for the self-employed people, they have chosen for this!” he says. I hear myself yelling to the TV: “Yeah right you pancake! We chose that our daughter got sick and that covid becomes part of our life. with your pinocchio nose, idiot!”. “Calm down” says Ruud. “He can’t hear you”.

We struggle on. Days become weeks, weeks become months. When we suddenly realize, we haven’t seen our youngest son for five months. We arrange transportation and finally on Sunday the 12th of June the whole family is complete in the garden on appropriate distance. Amazing. Meanwhile it’s the end of August and we’re still struggling on. But fortunately lots of friends and our family make it possible to carry on. Unimaginable all the things that are being done for us. No one knows how long it will take, but we are so done with this! With lots of patience, love and positivity we’ll get through. Covid is not even our biggest problem.

Gylian and Charlotte

From March till July we have been in quarantine together. No one in and no one out, to protect ourselves and the people around us. Groceries were delivered and we only went outside if we really had to. After a few weeks of quarantine we started with a daily walk to get some exercise and fresh air. We were coping well with the two of us. We both did our own thing and the apartment is big enough to have our own space. But it wasn’t all ‘just fine’. The worst was that we were not able to see our family. From the infamous press conference the Korver residence went in full lockdown, to protect Shymo. People could visit, but were not allowed to come in. In front of the window we could talk through our phones, it worked for the time being, but wasn’t ideal.

We were not able to see Shymo from March till June. As we were sticking to the rules as good as possible, we avoided public transport during lockdown and were bound to our apartment in Amsterdam. We did call and facetime a lot with Shymo, which was fun, but never enough. It were snapshots and were just not seeing the whole picture. You can’t look at each other, or hug… Eventually we had to buy a car because of a new job and that instantly gave us some more freedom. From that moment on we could visit at least once a week to sit and chat in front of the windows with Shymo and the family, that was so nice! We also could visit for Shymo and Zyara’s birthday and visited often to have a coffee in front of the window. Because of the low chance of spreading in the open air it was decided after a while that Shymo could go outside. From that moment on we could sit in the garden and have a meal together with Shymo without a window separating us.

Currently we visit Shymo at least once a week and it’s so nice that we can see her without being a direct danger to her, but it remains terrible that we cannot give her a hug.

We stick to the guidelines as good as possible, to protect Shymo and all the other people who have an increased risk. If everybody contributes in that manner we’ll get rid of this terrible situation as soon as possible.

Zyara

How I experience(d) quarantine? Well, it wasn’t easy. It is what it is so you want to make the best out of it. The first period I experienced it as cozy where I could have quality time with Mo, while everybody around me was complaining that it was taking too long. And now we’re still here while everybody else has been on vacation. And us? We’re still inside since March and nothing has changed. That I’m with Mo all the time also means that I haven’t been with Mats for a long time. Which is not nice.

Now it’s almost September and classes are starting soon: how are we dealing with that? That is just one of the questions to which you have to figure out an answer yourself and it will continue to be like that for a while. As my dad is at home more often I decided to join him with chores around the house. What else is there to do? I can’t sit on the couch the whole day. Now Siem has been around for two months, which is good. We’re together when Mo, Mom and Dad are at the hospital. We cope on like that and we’ll see we can and cannot do and when.

Corona has not made things easier for us, but the positive vibe is still there, to call it like that. Otherwise it would have been a lot harder.

Mirte

Because of corona it is dangerous to get too close to Mo. Because of that Mo went in to quarantine. The only possibility to see her was through the window. Shymo was inside in her wheelchair with Siem, and me and the girls were outside. We used Facetime to talk to each other and could see each other in real life!

I enjoyed being able to see Shymo through that way and to chat, but you did notice it did not feel ‘real’. On her birthday Ruud transformed the doorway with a plastic screen. Because of that we could see each other!
Since recently I’m allowed on the balcony. We go through the house with a facemask to get to the balcony. Mo is sitting in her chair in front of the sliding doors, which are allowed to go open! So now it feels like I’m really visiting her at home. It’s hard not to jump at her and cuddle but I’m very happy that I can see her in ‘real’ life.

Shymo met het nieuwe medicijn

Shymo’s blog: eight long weeks with a terrible ending

15-07-2020

We’re in week five of the new treatment, which as planned starts every week with a blood test, measuring my weight and length. I’ve lost another 1,3kg, which is good. But unfortunately the blood test shows that my red and white blood cell values are very low. This week I’m allowed to get the medicine, but next week is still uncertain. We’ve stopped with the rheumatism medicine for now as that could be the cause of my low blood value, very annoying. Also after my meeting with the oncologist I’m getting an examination from a neurologist. Who thinks I’ve lost some strength in my right arm. Which I agree with, but on the other hand this neurologist never examined me so how reliable is this outcome then? We’re done early this time and are on our way home, we thought. In the car on the way home we realized that we had to go to the pharmacy for medicine. So that became another tour through Utrecht, whoops!

22-07-2020

With a whole list of things that are not going so well, we are on our way to the hospital. First of course we’ll have the blood test, after which we are waiting for our meeting with the oncologist. The meeting immediately turns to the epileptic seizure from last weekend. We notice a small relieve when the oncologist tells us that it could be due to the scar tissue from the radiation treatment. But when he examines my hand, he does not rule out that the tumor could have grown. We are discussing if we have to stop the treatment and get a scan immediately. Another option is to continue, which is possible since my blood values are good enough. That would mean that the MRI would be in three weeks. We choose for the latter. The epilepsy is for now under control with medication. We we’ll go for it, is what we think. We haven’t learned a lot and are taking a passive stance for now. Maybe against our gut feeling, but we keep our hopes up that the treatment works! I’ll receive this medicine for another two times before the scan. I am working so incredibly hard for my miracle, so please let it work.

29-07-2020

It will be a busy day full of meetings and new faces, because the oncologist and server of my doctors are on holiday. First the weekly blood test and the whole circus around it. The social worker comes by and finds a euro on the floor. She gives it to me with a big smile; “a lucky coin”, she says. So sweet. Maybe you wonder: why does this make you happy? But it are the small things that cheer me up. That’s why the Princess Maxima Center is not a bad place to be. After this they’ll connect my intestinal probe at the WKZ. A routine job, we thought. Not. Dad and I walk back to mom to tell her that there were some complications. The probe didn’t want to enter my intestines and curled up in my stomach, which resulted in 45 minutes of pushing, twisting and pulling, all without anesthetics. It made me go crazy. But still I did make them laugh by telling that I had chocolate for breakfast, since I could not keep anything else in. For weeks eating has not been my strongest point and that is why I need the probe. I’m also currently not capable of swallowing my pills, as it all comes back up again. Finally the probe is placed, which is great and now we can go back to the PMC.

There we check my weight. 59,7 kg finally below 60 kg again. Blood pressure, pulse and temperature are also all under control again. Then we have to wait. After one and a half hours I’ll get the treatment and meet with the (replacing) oncologist. She is full up to date, which is very nice and calming. It is decided that to increase the dose of the medicine against epilepsy, since the seizures continue. After that the dietician comes over to give an explanation and to calculate how much food my body needs. The nurse teaches us how the probe device works. Our name is Korver of course and we all want to do it ourselves, instead of getting someone over from home care. Meanwhile I’m getting the treatment and the doctors and nurses keep coming and going. At 15:30 we’re done, getting our beads for the persistent chain and are on our way home!

05-08-2020

We’re actually not aware of the schedule when we arrive at the PMC . It was simply not clear to us. All we knew was that it was going to be a very long day. Fortunately it was all in the computer at the counter. Over there they arranged that we could go straight through to get a picture taken of my stomach, to see if the probe has been placed correctly. My situation hasn’t improved a bit since the probe has been placed. It’s so busy in the hospital that we can’t sit in the waiting area. Because of that we can go straight through to the day admission, where they reserved a room for me. I’m always glad when they arrange that, because being in my wheelchair all day is very exhausting. So having a private and calm room really helps! Soon we hear from the (replacing) oncologist that the probe has been placed correctly. Good news, but on the other hand we are wondering why I still can’t eat or drink. Also I haven’t lost weight this week so half of the probe food is still too much. A mystery that the doctors will have to resolve. The MRI has been rescheduled from 15:30 to 14:00 and the time slot where I receive the medicine has been set to after the scan. Very nice! During MRI I’ve watched Shrek, got the treatment after and at 16:30 we were on our way back home, where Siem was waiting for us with dinner!

07-08-2020

We have the result of the MRI and to express it mildly, the results are bad!! What we discovered is that there is growth on the location where the epilepsy is coming from. This wasn’t a total surprise to us, since the epilepsy had been gone for a while. They also noticed growth in my back where the coordination of my arms is located. I hoped to badly that this would not be the case. You do expect it a bit, but there was a very small chance that it would be because of the uncontrolled fat. But when you get the confirmation you do feel terrible. For me this is the hardest part to deal with. I don’t want to go through life as a living torso, it’s very likely that I’ll lose all my self-esteem in that case. How far can you go right? I don’t know anymore. Something we also cannot understand is that, in my lower back, where it all started three-and-a-half years ago, also started to growing again. But this tumor was completely removed. The radiologist and the oncologist have been notified and the boss of the current study will also look into it. Only while I’m typing this I realize how angry this makes me. I feel terrible. I’ve been doing my best for such a long time, when will I get what I deserve? Give me bits of future.

To end this blog with a bit of positivity: the biggest tumor hasn’t grown. Still it does feel like we’re back at the start again. When will this end…

Shymo in het ziekenhuis

Shymo’s Blog: Fifteen kg extra and the new medicine

12-06-20

It was a long day full of planned, but also unplanned appointments. First thing on our list was the PICC-line. Which is necessary for the new treatment. The whole procedure took about an hour. At home I was worrying myself since the stretchmarks on my arm were very fresh and present. But fortunately it was not too bad and we even had a fun time! Next thing I had an appointment with my oncologist and the research nurse. The research nurse will guide me through the new medical scientific research. If all goes well, we will start Wednesday the 17th of June. Very exciting!

Damn, I’ve gained weight again and because of that (as the moisture keeps getting worse) other specialists are now getting involved. They think it could be due to clogged or pinched lymph nodes. Also my medication list is being examined to make sure it is not because of the medication I’m taking.

After that I had to go to the neurologist. She was very shocked from my stretch marks (compare it to war wounds) and wants to involve a Dermatologist. On the other end she is pleased about the strength in my arms and we hope that the finer movements will improve as well. We do expect that, taking into account that we still have to get rid of the moisture.

Quite often we got told that we should outsource certain tasks, since we’re doing everything ourselves. But we actually like it to do all these things ourselves, like the caretaking. But we must admit that there are some things where some help would be very welcome. So we spoke with the comfort team and the rehabilitation doctor. These ladies can for example help us with getting a hoist for at home so that multiple people can help me to move, because now my father is only capable of doing so.

To make the day even longer, in between I also had to get a picture taken from my lungs and at 16:15 was the MRI. This all in preparation of the new medicine. After the MRI we also had to get the PICC line flushed through with anticoagulant. Eventually we decided to stay for dinner in the hospital and to avoid traffic, which we did!

14-06-20

Yesterday morning I have been very dizzy multiple times and did not feel well. We put the Fitbit around my wrist and discovered quite shocked that my heartrate was 171, after which we slightly panicked and my heart rate even jumped to 189. After that the Fitbit was not able to register a pulse anymore. I was having a hard time and it was quite scary. Normally I’m quite capable of letting my body recover when something goes wrong but this time that was not the case. I was very close to passing out, but fortunately I was able to regain my control thanks to dad. After that we decided to contact the hospital and we had to come over at 21:30 for some checks. This Wednesday we’ll also start with the new medicine and therefore I was a bit frightened if we could go through with it. They took an x-ray, ECG, blood and checked all my values. Eventually the ward doctor said “go have some sleep and regarding the ECG, no news is good news. In the morning an Oncologist and assistant came by to check up on me and quite rapidly decided I could go home. Fortunately we don’t have to worry about Wednesday.

In your, carotid artery on both sides of your neck are receptors for your blood pressure. If you in an instant turn your head and you pinch that vein your body thinks your blood pressure is too high. As a result your veins open up and your body wants to lower your blood pressure. When your blood pressure eventually becomes too low you can pass out after which your body enables itself to recover/stabilize the situation. To stabilize your heart rate goes up. The thought is that this happened as I’m holding a lot of moisture in my neck. So while turning my head I’m blocking that artery. But they are not completely sure. First they though my PICC-line was too deep but fortunately that was not the case.

17-06-20

The day of the new medicine! Today the hospital day will start with taking a blood sample. After that a meeting with my oncologist and in between a quick detour to the UMC to see the dermatologist. While seeing my oncologist we get the result of the MRI. The results are as expected. Here and there some coloring and some standstill. In this case the coloring does not necessarily indicate growth, it could also be a delayed effect from the radiation treatment. My blood values are good, that means I can start with the new treatment. I’m the first person in the Netherlands who gets this medicine. Because of that a lot of people were present because also the doctors and nurses found it a big exciting. Every fifteen minutes they checked my blood pressure and temperature just to name a few. It went well and nothing unexpected happened (like an allergic reaction). That means: I’m going home!

The moisture that I wrote about earlier in the blog eventually appears to be no moisture at all. The dermatologist discovered that it’s actually uncontrolled fat storage. This came to light during the last MRI. It’s probably because of the high dosage of Dexamethasone, Prednisone and Hydrocortisone. I’m very disappointed by this. Since corona started I’ve gained more than 10 kg and it is also bothering me very much. At one point in time I gained 1 kg in five days. It especially hurts due to the pressure on my body as well as the ripping of my skin. The stretchmarks became unimaginably big and will not go away anymore. But I’m least worried about my appearance, the pain: that is the worst. And not being able to move since everything is so heavy. But, we got rid of the Dexa and Prednisone. Now it’s just a matter of time to reduce the amount of Hydrocortisone. I’m very curious if this will solve my problem, because in my current state I’m unrecognizable. Where is Shymo?

24-06-20

The second time with the IV containing the new medicine! Today would be an calm, ordinary hospital day. It eventually was, but it all took longer than expected. First we had to take a blood sample, measure and weight. I came back quite sad from that. I gained weight again… WTF! How!? Now my weight is 64,6 kg, while my normal weight is 50 kg. That means I’m holding almost 15 kg of uncontrolled fat. The oncologist picks us up and he as well is not amused. We went through the whole list of medicine again, but nothing seems to clarify. Conclusion, it should improve with this new dosage of Hydrocortisone, so we agreed that we’ll have another look next week.

On to the day admission for the IV with the new medicine. I’m glad that the blood results came back positive and fortunately I also did not have any allergic reactions or nasty side effects. It was a long day, but we had so much fun with the nurses and the assistants. That matters a lot and helps you to get through the day a lot easier! The staff of the PMC is amazing, that is certain. Now I’m awfully tired and we’re on our way home. We’re hoping for the best and that the fat will disappear soon! After all these setbacks and treatments that didn’t work we are hoping that this will be my miracle cure… are you hoping with me as well?

Shymo Magazine

Shymo’s blog: 20 years!

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.

Na het bestralen

Shymo’s Blog: My month May

04-05-20

Today we had quite some appointments at the UMC. For an intake, CT-scan, to make a radiation mask and for a meeting with the radiotherapist. It went swiftly and smooth. The waiting time was minimal, very nice! We were even done an hour earlier than scheduled. That has not always been the case haha (five hours láter…).

Thursday morning two ladies of MoveHS will come over to see if they can arrange a nice wig for me. Thursday afternoon I’ll start with my radiation treatment. It coming period will be difficult but I’m entering it with full courage! My hair loss will be upwards from my temples, so the possibility that I can cover the bold spots with my own hair is very small.

07-05-20

Well everybody that was quite a strange experience! Two lovely ladies from MoveHS came over for a window visit with three beautiful wigs. Mama and Zyara watched when they came out of the boxes and immediately fell in love! They look very realistic and you could see the difference compared to fake hair immediately. After fitting, measuring and a lot of looking to myself we came to the conclusion that wig number one was the absolute best, wig two was too small and wig number three did not fit nicely. It is a tiny bit darker than my original hair color but I am very pleased.

It was really bizarre how this all went, because I expected five sessions of crying and eventually ending up without a wig. I was quite scared towards this appointment. Because it is quite a big step. Not everybody just loses their hair one day and especially for women it is very characteristic as it defines a big part of how you look. Also not everybody has been sympathetic about this and you notice that as people do not take into account how emotional this can be.

The ladies of MoveHS have shown me a completely other side during the fitting. Even better: they made it fun. From the first minute that they were in front of the window I already liked them and they gave me the feeling that it will turn out well. They are the greatest team together and are open to a lot of options. They even offered to come back on Saturday as they did not want to make me too tired. Because I still had my radiation treatment in Utrecht that afternoon. They will adjust the wig to make it matching to my original hair and they’ll come back with it on Saturday! Saturday they will do the last adjustments on location and voilà! This is such a relief and I had a good time as well: it was a real session amongst the girls and they were very sweet and gentle. And… as icing on the cake… They want to donate the wig, isn’t that amazing!!! I do have to process this. Wow what a day!

Radiation treatment went well today. The machine broke for a moment which caused a half an hour delay, but dad and I are always prepared so it eventually went quite smoothly. For example I always make sure that I’m not wearing anything metal and my dad and I are well prepared for the lifting on the table and that sort of stuff. Furthermore nothing strange happened and at four thirty we could drive home again. Tomorrow will be another busy day which will start with leaving the house at ten thirty, going to appointments in the PMC and after that we’ll have to go to the UMC for radiation treatment. We’ll see what happens!

08-05-20

I am no longer allowed to use my rheumatism medicine as it cannot be taken in combination with dexamethasone, so let’s hope that the pain just stays away! That is my expectation since you could sedate a horse with dexamethasone. Today I have to make a very clear message that my body is not working properly and that I do not like how things are going. The epilepsy medicine causes tiredness while the dexamethasone causes insomnia, not a good combination for the night…

It’s not easy to write this much but it helps me to process all this by writing it down and it also helps to provide myself with an overview of all the situations I’m in and to get things sorted. I want to build muscles again so badly and I do think that all the rides with the car and all the lifting sessions are a good start for it. I hope that after the radiation treatment I will regain some strength and that my stupid right arm will start to recover, because even typing this takes a lot of energy. And I still have a full day ahead.. I try to challenge myself with small things, like eating at the dinner table. I haven’t done that in ages but during corona I started with it immediately as I cannot go to physiotherapy. And I don’t want flabby legs, because I still want to look good!

It really is fingers crossed and hope that the cells of the biopsy start to grow to get an as good as possible image of the possibilities. The rehabilitation doctor and I have discussed my spasms and other things that bother us. Like how I am feeling and if transfers are really necessary. It was a nice conversation and I have done my best to explain as clearly as possible what this situation is and where I would like to see improvement. I got told that they have the utmost respect for me and how I deal with all this, because they have seen it a lot different in their line of work. This happens more often and really makes me feel good!

12-05-20

Today was a very intense day with a lot of tensions. Because, do I have to stay in the hospital? How bad is the situation? All answers that I am waiting for. We arrive in Utrecht with the three of us. Which is actually not allowed, but when I get hospitalized my mother will have to stay with me in the hospital, as always. While I’m making all the transfers with my dad, because I just don’t have enough strength. The day starts in the UMC, with radiation treatment. This appointment goes as scheduled and we’re done at ten thirty.

We drive to the PMC, but the same rule apply and you’re only allowed to enter with two persons. So my mother goes her own way and we separate. My dad and I go to the desk and are received kindly. We started with taking some blood samples, which went smoothly! After that we were picked up for a meeting with the oncologist, a new attending physician and another oncologist. This because they have let us know in advance that I might need to be hospitalized. We discussed a lot and did some tests. Fortunately there were no strange results. Only my thyroid is working a bit too quick but that can be solved quite easily.

The conclusion is that the dose of pee pill is going up and the dexamethasone will be replaced by prednisone. With that we hope to reduce the amount of moisture that I’m holding and that it will solve some of the other problems within my body. We also had an appointment with the occupational therapist and the physiotherapist. They wanted to help us, by investigating how the transfers would become less of an effort. For example with some kind of belt around my belly. But no definite decisions have been made yet. Thursday I’ll have to come back for a checkup and then we’ll see if the changes have any impact. I really hope so, because the pain, itch and tears in my skin seem to get worse. But all in all it was a pleasant and useful day.

15-05-20

Well, if it’s up to me things could go better. Fortunately the radiation treatment goes swiftly. Only three more to go and then we’re done! But I am holding almost ten(!) kg of moisture and that really sucks. Yesterday we did reduce some medication so hopefully things will improve over the weekend… Physically things are not going that well, but mentally I’m fine. Fortunately I’m not really in pain, only sore muscles in my neck and upper back but I think it’s because of the moisture, dráma.

The dexamethasone got replaced by prednisone again, because the side effects were too intense. The dose of epilepsy medicine got reduced. Because I haven’t had any epileptic seizures for the last one and a half week. We did increase the dose of pee pills with the hope of cutting the amount of moisture that I’m holding. And the ‘chemo’ that I’m using has to stop for a week. Because it could be that it reacts with a steroid and because of that I could hold fat lumps in my body. A whole list of things, but we’ll see how it goes.

Monday, Tuesday or Wednesday they will make a stomach echo for the moisture. The radiation treatment itself is not bothering me that much! I have thin mucous membranes so my cheeks and gums are on fire, but I’m used to that. That means no potato chips. And often right after the radiation treatment I have a headache, especially near my forehead/eyes but I can ignore that. Something that could be quite fun to tell is that since a few days I have been capable of squeezing my own pee out, instead of using my catheter. But all in all I’m getting through the day quite well, that is what I also told my oncologist. Only they moisture is really annoying. I really hope that the radiation treatment will fix my arm. It’s very scary with some things to not being able to trust your own body. Even if it’s just picking up a glass, I’m doing that with my left hand out of precaution.

19-05-20

I noticed that the bond that I already had with my dad has been getting even stronger over the last few weeks and I really enjoy that. He understands me so well in how I think and how I feel and even if I’m acting angry towards him he knows how to adjust to make things good again. The medication is really messing with my head, but if your body is not collaborating as well it becomes twice as heavy.

But because people on the outside are having such a hard time with corona I do have the feeling that the whole radiation treatment and everything around it is forgotten sometimes. That hurts. Also at the moment I’m in a lot of pain. Head and neck pain especially. But also pain in my stomach and an arm that’s not working (can you imagine that?). Everything is piling on top of each other.

20-05-20

Mentally I’m doing fine. I did burst into crying yesterday during the night but that had multiple reasons. The main reason is that every night that I had radiation treatment during the day I only sleep for about two hours, sometimes I have weird dreams as well which make me panic and at this moment I’m not capable of doing anything myself so I have to ask everything. Since the 11th of May I only noticed the smell of epilepsy once, so that is a good thing. My arm is still lacking behind. My body is literally tearing apart and everything hurts. I still can’t lift myself and I can go on like that, so my dad has to help with everything. To summarize: physically everything sucks, but we are working on making things better!

I did notice that a lot of opinions have been formed about how I should loosen my quarantine restrictions. The biggest problem is that my paraplegia comes to my waist and because of that I (already) have problems breathing. So if I get corona and it gets to my lungs it could be life threatening. And if that happens you’ll regret it!!

I am missing Siem a lot. Twice a week he shows up in front of the window but that is getting harder as we really want to cuddle. Or at least sitting next to each other, haha. We are facetiming frequently but everything is just a bit weird. I know he’s having a very hard time with it but I wouldn’t know how to make it better, more fun or even easier for him… I am taking about forty pills a day so my head is not working that well all the time and to be honest I am thinking a bit more about myself these last few days. Which is not always fair towards Siem. These times are just not easy for me, if you can only imagine how much effort it already takes me to get in a car.

Shymo en Otis

Shymo’s Blog: Unpredictable Time

20-03-20

Today we have been to the PMC It was unexpectedly quiet but we were received with open arms. I gave quite an amount of blood for a scientific research. The objective is to investigate which substances active the infections within my body, for example the one that I had in my esophagus last December. Through this they try to get rid of the prednisone and get me a replacing medicine. There is the possibility that the infections can influence the tumor and we don’t want that of course.

03-04-20

We’re back from the hospital. Now we have to wait until they have taken a look at the blood for the inflammatory values and sediment. The current target is to figure out where the moisture and pain are coming from. We need to find a balance between the prednisone and pain, to eventually start with a medicine that replaces the prednisone. We have to get rid of the prednisone, because the longer you use it, the more side effect and the longer it takes to stop with its usage. We have not received any update about the biopsy yet.

The sediment and inflammatory values are down: so we reduce the amount of prednisone. If it stays like this and the pain won’t increase we can look into switching to hydrocortisone and if we can reduce the amount of prednisone even further.

06-04-20

Since Saturday afternoon the pain started to increase and I’m holding an incredible amount of moisture. So much that my skin starts to rip, resulting in large stretch marks as big as two by ten cm. I have to report at the hospital on the 8th of April at ten o’clock, then they’ll make an echo from my shoulder and I’ll have to give blood again.

08-04-20

It seems I have a condition known as Polymyalgia Rheumatica (PMR) and came from one of the treatments that I had before. This has been discovered through the medication that I’m currently using. It is a type of (muscle)rheumatism that normally occurs at people that are over fifty years old and it affects the muscles in the shoulders, neck and the pelvis. They want to treat this through medication which I’ll have to take once a week as a shot, just like the fragmin that I take. It should work after about a week and until that time I’ll have to take my normal amount of prednisone. PMR normally reacts the best on prednisone, but that is not an option due to the side effects.

12-04-20

Yesterday I did not have a nice evening. We were planning to eat sushi and my sister and mother were busy in the kitchen. Suddenly I don’t feel well and my sister calls at my mom that it’s not going well. I tried to explain that I got nauseous and was smelling a terrible smell. I went outside to lay in the sun and get some fresh air and fell into a deep sleep. Meanwhile my parents were investigating the symptoms and it could have been epilepsy. I woke up, took a shower and almost immediately went to bed and continued to sleep. BUMMER!

13-04-20

There has been contact with our oncologist and he is quite certain that it had been an epileptic seizure. Meanwhile there also has been contact with the neurologist. In the afternoon a courier will deliver medication against epilepsy. At the next scan we shall see if the tumor is growing and this will be just another thing that I’ll have as well.

17-04-20

Today we have been to the hospital and we spoke with the oncologist. He thinks that the epilepsy has been around for a while but at a much lower level, it’s connect to that I’m sleeping bad and short as well as that I’m confused sometimes and tired. Monday we’ll discuss the possibilities and results of the biopsy. Friday there will be an MRI to see where we are and if there is anything new. If the MRI shows that the tumor in my head has been growing, they want to start with radiation treatment over there as well. That part has never been radiated before and if located quite high in my brain. We’re reducing the amount of prednisone. The research from the neurologist suggests that there is some loss of power in my right arm. For now I’ll have to continue with the medication against rheumatism and epilepsy.

22-04-20

Yesterday we received a phone call and instead of Friday I had to take the scan today. Also the normal checkups have been done today. Hopefully we’ll get both the scan and blood results by Friday. Meanwhile the results of the biopsy start to trickle in.

The case is that one of the three mutations that I had is not within the biopsy anymore. The doctors are surprised but they think it is because of one of the other treatments that I had before (this was the easiest one of the three). There are two mutations which seem to have changed for a bit and my oncologist insists on treating them. The course that my oncologist has set is not easy and quite complex. The biopsy is on culture and that takes time.

All around the world I have been discusses and many have responded positive about the mutations in the H3K27 tumor. They call it a miracle that I’m still here. I am ‘all over’ on the agenda and that is good! The annoying thing is that I just don’t feel well. The moisture hurts terribly, the tiredness takes a lot of mee and it just doesn’t feel right in my head. Hopefully we’ll receive the MRI results on Friday. The expectation is minor growth, based on the epilepsy.

But for now we received a glimmer of hope and that is just what we needed!

24-04-20

As expected the oncologist called today. From the conversation it became clear that I will need radiation treatment and as soon as possible. The case is that all of my tumor have partially grown. We don’t know by how much. It is very likely that the loss of power as well as the tiredness are the result of this. This sucks!

28-04-20

An emotional day! We have send the doctor an e-mail again because the amount of muscle strain increased, the amount of power in my right arm became less again and I suffered a couple of times from epilepsy. The epilepsy exposes itself by giving me a sick feeling in general, smelling a weird chemical odor and suffering from pain in my head and neck.

The answer on our e-mail is not what we wanted to hear. Dexamethasone has been added to the list of medicine that I have to take. Fortunately that is instead of prednisone. But actually both of them are dickheads regarding their side effects: holding moisture, varying emotions and complications in the muscles.

Today, just like earlier this week, we discussed the topic ‘wig’. I will start with radiation treatment soon, where they will treat my head as well and they are not sure yet how much hair will disappear. We do know that we cannot solve it with my own hair anymore and that is quite a bummer. My mother took the task of to contact companies that sell wigs. But of course these companies are shut because of the coronavirus.

But even in this situation my mom did succeed to find a company. She spoke with a very kind woman on the phone who would love to help, thinks with us and came with solutions. She also e-mail some pictures of the hair and how it would look like. After a good conversation this lady will come over next week and we will fit some wigs in a safe manner. She will come to our front yard and will provide us with instructions in front of the window while inside we will fit them. Exciting!

Meanwhile the pharmacy is in front of the door with the dexamethasone, which will replace the prednisone. I’ve been taking the prednisone much longer than desired and time is finally there to say goodbye to the bastard. For a little while I’ll have to take the dexamethasone but after that hopefully no ‘sones’ for a very long time!

See you soon in another blog!

Kanjerketting Shymo

The Persistent chain

Hi Readers!

My name is Zyara and as most of you already know, I’m Shymo’s sister. My mother and I are the ones who maintain Shymo’s persistent chain.

The persistent chain launched in 2006 and is established by the Parents, Children & Cancer association. The association supports family’s with a child that is suffering from cancer. To support these children, they came up with a system made up of beads. Each bead has a different meaning, ranging from treatments or examinations to different events. Shymo also had different kind of beads around her chain such as the ones for radiation treatment, getting a shot, anesthesia, hospitalization, surgery, injections, you name it. As of late 2007 the persistent chain has been introduced into all pediatric oncological hospitals in the Netherlands.

The association’s supplier of the beads is BSCI certified. This means that the producers that they collaborate with are providing good working conditions for its employees. Every year over 200.000 beads are being produced for children with cancer in the Netherlands.

For us as a family the chain, keeps us aware, helps to explain to others but also creates an image to visualize what Shymo already has been through. Meanwhile her chain holds 1027 beads and is over 13 meters long.

Only when we started in the PMC hospital did we start with the bead chain, because that is when we discovered its existence. Which is quite strange, since the initiative started that the VUmc where Shymo was being treated before. That is why we build up quite a lag but thanks to the amazing people of the PMC we did get all the missing beads. Our experience is that in the hospitals for adults the persistent chain does not get a lot of attention, while this is also a type of support for young adults!
A lot of people don’t know what what Shymo is actually going through. But this chain clarifies a lot and helps others to in a simple manner read her story; because every bead tells a story.

When Shymo has been at the hospital and had all her treatments and consults, we go to the doctors assistant and get the beats from the storage. At home we collect these and sort them in a little pink tray and as soon as it’s full Shymo and I string them to the chain.

Sometimes it happens that there is no bead for a particular treatment, but even for that there is a solution! You can make your own bead from a special kind of clay. Sometimes they even have special beads which Shymo gets from someone in the hospital. Recently she got a Proud-as-a-bear bead to live up the chain! Ofcourse we are also as proud as a bear and it is very nice that we are able to record that with a bead in the shape of a bear head.

We do hope that not to many beads will come our way anymore and that Shymo cures. But for now we will keep collecting them…