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.
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.
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.
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!!
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).
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!!
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.
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!
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.