Recently it has become harder for me to write blogs. This is because I cannot use my arms and hands and it costs me a lot of energy. Sometimes I am a bit confused and haven’t got everything sorted in my mind. But besides that I do want to tell you that you should never feel a boundary to send me a message or ask me a question!
We had quite a stable week without any odd things, but should be allowed sometimes, right? Also I have been spoiled a lot; Christmas came soon this year with all the lovely cards and sweet wishes. And I haven’t even started yet about the presents that I’ve received, such as plants, cake, home baked cookies, chocolate and lots of warm hats (and I probably forgot to mention some things). The amount of hats I got is due to my hair loss. This week I also had an interview with ‘het Noord-Hollands Dagblad’ about how I’m currently doing. Fortunately I had the energy for it and it all went smoothly.
I don’t have to go to the PMC this week, because we had a phone appointment. After all those times that I did not feel good enough to go to the hospital I do feel quite ok right now. Then you’ll see that this time: when I’m finally feeling quite well, we’re still not going! I find that quite sad as I see it as my ‘event’. Who would say that; the hospital is an event?! Well, I do! The blood values are good and if it stays like that we can increase the dosage of medicine as of next week. Also I haven’t take as many naps this week, which is nice because there was a moment that I was more often asleep than I was awake.
Also Saint Nicolas is in the country, and as young as we are, we were allowed to put our shoe at the chimney. It was such a fun week and it’s really nice that at such moments we’re with the whole family because of the quarantine tent. It always does me really well to see my brothers and we’re always having such a laugh. Fortunately we already had this much fun before we went into lockdown. We laughed and had a lot of fun and we’re really hoping that we can give each other a hug anytime soon.
It feels like such a long time since we went to the PMC, but today we finally went again. Going for a check up to the hospital.
We gave all the assistants a necklace from Little Love Bird and of course some traditional “pepernoten” (little ginger bread cookies) covered in dark chocolate. They are happily surprised and start wearing the necklaces immediately. Today I got told, from of course one of my favorite assistants, how much she admires me. I already find it very normal the way I live and that’s why I find it very special that with my sober mindset I’m inspiring people.
Next we got picked up for my blood tests and to weigh. Guess what; of course I have gained weight again… stupid Prednisone. You could think “girl, don’t you worry about your weight,” but this actually brings so much extra problems along, more than you can think of.
After that we went to the Oncologist, who firstly asks how I’m doing. “Well”, I say, “I haven’t got much to complain”. “No I also haven’t received an e-mail with a list of inconveniences this time”, says the Oncologist while laughing. “But Mo, the test results of the lab show that the salt level in your blood is very low”, he adds. He wants to test my urine as well. Alright, the Oncologist arranges a room with a bed so I can catheter and after discussing the adjustments of my treatment we are going there. After we arrived, we discuss that this is a setback and that I should not take my treatment against the tumor over the weekend. I can’t drink too much and should eat more salt. Monday we’ll do another blood test and after that we have a phone meeting.
After the catheterization my mom suggest to get me something salty, it can be easily arranged. She asks me if I think that it’s a good idea. Well… I could go for a sausage roll! And before you know it some fans arrive at my room. So kind, haha. It’s not until 16:15 that we are on our way home again, were we hopefully are going into a lovely weekend. But first we’ll have some chicken soup (with extra salt for me)!!
We would like a lot more weeks like these. I am feeling well and am noticing a slight improvement in my energy level. I’m also singing a lot, lovely. We’re all yelling along with BLØF all across the room.
On Tuesday we send the Oncologist an e-mail where we mention that my blood pressure is a bit low. His reply is that we temporarily have to stop taking the thrombosis treatment. Today we’re off again to the PMC. We also brought some fancy chocolates for the doctor’s assistants. First we have to get my corset adjusted, because it’s still not comfortable. After that I have to get my measurements taken and have to weigh again, which we won’t talk about… Then the blood test, having lunch and waiting for the Oncologist. I just took my last bite and there he is. It’s running smoothly today!
During the appointment with the Oncologist I start the conversation (because he keeps looking at me in a way that says ‘well, tell me!’). “Well, I’m feeling quite good”, and I start to smile. The Oncologist smiles back and tells me that it makes him very happy to hear that. If the progress that I’m making is due to the radiation treatment or the medication, he doesn’t dare to say. That is because my tumor acts quite differently than other tumors. The blood values are better than expected and therefore we are allowed to lower the dosage of Prednisone! That is such a relief as I’m still holding a lot of moisture due to it (ten to fifteen kg…). He wants to delay the scan until there is a direct reason to do so or until a new treatment becomes available. Then we talk a bit about the tv show “Pauw” where my Oncologist appeared. We share the credits and some compliments that we received about him from our direct environment. It makes him happy to hear that. In a positive mood we’re going home!
Today we’re celebrating Christmas!!! Reason: I’m feeling well, everybody could get that day off from work and everybody already had their presents in da house… so, let’s do it!
Everybody was busy with their own task that day. Mom was wearing an apron in the kitchen, but also Zyara who made the grand dessert. Gyl and Yer were behind the bbq and Zoë and Char were sorting the last details. Dad was the superhero who was helping out everybody. Maybe Siem and I even had the most important task: we made a quiz, and with some minor adjustments it was also finished on time.
First we are sharing the presents with the person who’s straw we draw. I start and then we take our turns. When it’s moms turn everybody focuses on Yervin. He grabs his gift and reads what is on the card out loud: “a happy 2012!!” Nice work mom! After that we have some bites and the quiz is up next. We were all fanatic, but still some people (1) tried to cheat. But we won’t call names, right mom! Siem goes through the quiz like a professional quiz master. After that it’s dinner time! The guys are super grill masters because the côte de boeuf was amazing. The vegetarians among us were also enjoying their food, but then from another dish. After the grand dessert we are having a coffee and that was it. Christmas on 13 December; why not! We had a lot of fun, had amazing food and enjoyed our time with all the amazing people around us.
The next day another press conference. Oh how bad, ooooh how bad… For us it’s not a big problem. Nothing changes for us as we’ve been in lockdown since mid-March. But we are happy that we have seen everybody yesterday and celebrated Christmas as planned. We are very grateful for that.
We probably won’t even have the Christmas tree up around Christmas anymore. Since I wanted the tree up quite early (end of September, whoopsie). Every day our tree starts to look a bit more dried up. We’ll see how long we last.
Meanwhile I’m still stable and am writing a letter to my tumor (which you can still read in the previous blogpost from helpmonu.nl).
The week before Christmas I had a lot of visits from friend in our tent, so much fun! Because no one has new stories, we are catching up on our memories. We are having a lot of laughs, so nice.
The day before Christmas we are doing a final visit at the PMC for the year. We are going through all the check-ups. My weight still sucks. After Christmas we well reduce the amount of Prednisone again. The dosage of my treatment against the tumor is at the desired level. Also my blood values remained stable. The Oncologist is satisfied and so are we! After that we chat with all the familiar faces in the PMC. After that we are getting my beads for the persistent chain, and we are off to home. On time for a cozy Christmas eve and of course a hopeful new year.
The last blog from 2020; and what a year it was right? Lots of ups and downs, a pandemic and a quarantine in which we have been for the most of the year. Looking back we truly made the best from it: we have an amazing tent with a wood stove on the balcony through which I was able to see my friends and family, through which we could celebrate Christmas with the family. And despite all I was still able to celebrate the holidays with my friends (through Zoom). And so you see; as long as you do your best you can always give a positive turn to the situation you’re in.
Whatever the new year brings: I’m ready for it. Full of courage and hope, but especially strong and resilient I’m entering the new year!