In previous blogs I mentioned that my hands and arms are not working well. That is why I do want to mention that I do this blog together with my family. Teamwork!
The first days of the new year go quite well, but soon after it goes downhill. One and a half weeks ago we were allowed to lower the amount of Prednisone and since that moment I’ve been watched extra carefully. First we noticed some minor things such as a sore throat, less appetite, tiredness; those sort of things.
From the fourth of January it gets worse. On the sixth of January I can’t get out of bed anymore and I’m barely drinking anything. I’m also having immense pain and it takes us quite a long time before we discover the source. Also because I’m not talking much. Around the start of noon we contact the PMC. The feedback from the Oncologist is as follows: “three times a day tramadol and otherwise 20 milligram of Prednisone. “Fuck” we think, but we knew that Prednisone would be the emergency solution. The whole Thursday we struggle on but around dinner time realize it’s only getting worse, therefore we decide to use the Prednisone. Whining and cursing; everybody has to deal with this in their own manner. But after half an hour I’m getting color back on my face. After an hour I start to talk and within two hours I’m eating and drinking again! We last on this dose till morning, but we have to go to the PMC. I get another dose, to keep me going. With only a fifteen minute delay we manage and at 11:45 we’re in the car!
As we arrive at the PMC I’m very cold. We get a little room and I get covered in blankets. “Mo, you look like gift”, says the nurse. “Only missing a ribbon!” Haha, she doesn’t mind arranging one of those as well. A bit later we get picked up for the blood tests and to change the probe, but than the Oncologist arrives: “can you come with me?” There’s three doctors waiting for you”. We’re on our way, we change the probe at some point later. We go through it swiftly, first the Oncologist. Meanwhile dad talks with the rehabilitation doctor and the Oncologist tells us to keep using the higher dose of Prednisone for the whole weekend. Monday we’ll have a call to see how things are. After the conversations we get the probe changed. It goes smoothly and the probe is placed correctly in one go! We assumed it to be a long afternoon but it was not too bad. Mom is getting the beads for the persistence chain and we’re on our way home.
It’s Saturday, that means I’ll go for a shower. Twice a week I make the intense journey upstairs. The other days I’m being washed downstairs by mom. We are already waiting for months for a shower unit so that I can shower downstairs but it’s taking such a ridiculous long time… It’s more of a burden than normally. Sometimes we abort the mission if it’s really not doable. But today I really want to go; I’m getting my shower one way or another!! The journey upstairs, including breaks, takes about twenty minutes. I can’t “just” use the stairlift without sliding off and believe me: that is very scary. So dad makes sure that his valuable package is always tied up properly. With tubes around me, lots of help and the desire to get my hair washed we succeed. Incredible, I made it! “I want an applause!!!”I yell loud. Everyone is clapping loud and silly. And as a cherry on the pie I get a standing ovation with a deep bow! The finally my hair gets washed, I’m being scrubbed, got a mask and the whole shebang. During lunch it feels like we’ve already been through a whole day. What do we care, we’re going for an afternoon nap.
The next days my brothers and sister in law come over for dinner in the tent, I always get so much joy out of that. The stove is on in the tent, so we’re comfortable and warm. When there is a lot of wind we have to speak up as the tent is making a lot of noise. At that moment it’s funny to see how everybody is yelling at each other.
I already told you multiple times that I can’t do anything with my legs anymore, but my arms got a lot worse as well and my hands are currently not able to do anything. That means that literally everything has to be done for me. When Siem is feeding my at dinner I compliment him on how well he does it. Siem is very patient and is doing a good job. I haven’t made the compliment yet or… “FLOP” Noooooo I’m covered in food!! I immediately start laughing, Siem starts laughing and because of that everybody starts laughing.
Today my electric wheelchair arrives. We’re quite excited. Everything needs to be measured and adjusted to the way I want it. They’re listening well to my wishes, but I never succeeds in one go. Early in the afternoon the moment is there. When the chair arrives, driven by itself, I’m ready. “WAUW!” is my first reaction. So cool, so nice… but then I get silent for a moment. It really hits me from deep inside. The man calmly starts to explain everything. Button here, button there. A lot of information, but fortunately I’ve got my family for that. Occasionally I hear “really, can it do that as well?” or “what, is that function on it?” And then the big moment: trying it out. Dad lifts me from bed in the wheelchair and… I’m position correctly in one go! I’m smiling, dad is happy and mom and Siem get emotional. In one go!!! Normally those type of things take a lot of time until everything is sorted and therefore we are fully enjoying this moment. The man asks us several and together we arrange the final improvements. In the afternoon the physiotherapist arrives she is also admiring my new devise, which should make live and travel a lot easier. After that I took a nap before dinner.
The next day we briefly hear something about a curfew. The next day it’s a fact including some more changes. Since March last year we’re in lockdown and we’ve been following the rules ever since. But after almost after a year the little bit that we were able to do is taken away as well. We can only hope that it won’t take too long.
This whole week I’m having trouble starting the day, it probably has to do with my salt levels. I’m using two types of medication currently which are lowering my salt levels so I have to eat a lot of potato chips (which I don’t mind). As of Thursday morning I notice some improvement; everything goes smoothly. At 10:00 literally everything has been sorted. Sometimes that takes till 13:30, to give an indication.
Home care is coming over today to take some blood samples. I actually have to go to the PMC tomorrow for the blood tests, but we have the feeling that it will cost too much energy. If we can save some energy by doing this from home then let’s go for it. The Oncologist does prefer to have the blood results this week, so that’s why we’re doing it like this. We decide to bring it to the hospital, then the results will be there in time. Siem is taking up on this task and drives up and down to Utrecht. The physiotherapist is taking me through a firm workout this afternoon, tired but fulfilled it brings an end to the afternoon. The next day we don’t have to go to the PMC. Fortunately, because the weather is amazing. We’re going outside for a brief moment in the new wheelchair. And I’m really enjoying it! Such an amazing feeling to have the wind in my hair and the sunshine in my face. After one and half hour we decide it’s been enough. A moment of rest and then up for a treat, because Zyara made sushi!!
It’s finally spring… well, in our house! We got some tulips, amaryllis, narcissus and snowdrops. When I’m looking around from my bed or in my chair the view is amazing. These are things that really make me happy. The good thing is that we have a lot of people around us that are aware of this; creating a little happy moment.
The smile that I put on my face when a card comes in is golden according to my family. Sometimes we even receive letters from ‘secret readers’, who came across my story somewhere. I find that very special.
Meanwhile it’s February, and it’s cold. When a friend comes over in the tent and we open the sliding door you can really tell the difference, despite the stove and heaters. No one stays for a very long time, but that doesn’t matter because I’m tired, very tired. I sleep a lot during the day, more than I want to. I want to do things, being a busy bee, but I just can’t bring it up. Then the days gets very intense. It starts when the mail arrives: ten cards came in for me, “whaaaat?!” Then the doorbell rings and an hour later we have three bouquets of flowers. Followed by cake, chocolate and even more flowers. During dinner the doorbell rings, “oh, that should be the pharmacy.” No, another three bouquets of tulips. Mom jumps around the house looking for vases. What’s going on…? It’s world cancer day, so it seems. It the fourth of February of course! So kind. People really sympathize with us, but today is unprecedented. Due to the lack of vases there’s even flowers in the granola jar. Lol!!
In the second week of February I have a lot of pain and an intense itch, it’s driving me mad. Dad contacts the Oncologist and there’s no other solution than increasing the dosage of Prednisone to reduce the amount of pain, itch and inflammations. Sh*t!! From this medicine I keep gaining weight and now I really want to get rid of it. The worst thing is that after a few days we discover that it didn’t give the desired effect. We struggle on. It’s also snowing this week, really a winter week as it should be. In my bed I’m being placed in front of the window: live TV! I’m laughing so much from what I see. Some parents are more excited than their children, hilarious. Cyclists who decide to walk, and cars who cannot get up the hill. Friends from ours are below the hill and are pushing the cars up. It’s really nice to watch, let Netflix be for this week! Also dogs behave differently: One really wants to play while the other looks at the owner like “ehm, can we go home (so that I can lay in my warm basked)?”. Later, when everybody got “used” to the snow, the daredevils come out. Cars with sledges at the back, someone who’s holding the back of a trailer that gets dragged along and a fan with one wheel place on top of a plastic sledge.
It was a bizarre week, where I’m getting worse and worse. Wednesday I stopped eating and the days after were bad as well. That means we had to contact the Oncologist. Immediately apply 40 milligrams of Prednisone was the advice, but things didn’t improve. At 13:30 dad and Siem went to Maastricht to pick up an adjusted car for me.
The following piece has been written by my mother.
Mo was still asleep. At 16:00 Zyara suggested to put some music on to get Mo out of her bubble. She woke up and was even capable to sit straight. She have had a cup of hot chocolate milk. “We’re back” we thought. Mo wanted to eat so I started cooking, while Zyara stood at Mo’s side. Then Mo tells that she’s feeling weird and that her left eye ‘is not working’. The meal is ready but after two bites Mo has to throw up. After Zyara and I ate and things seem to have calmed down again I quickly go to the washing machine. Then Zyara yells: “Mom, it’s not going well!” I see Mo turning white and her lips start to change color; she turs ash grey. I need to make a call quickly, with shaking hands and panic in my body… “there she goes”, I’m thinking from one side. “No!” says the other side. I start to mention what I’m seeing and what Mo was suffering from and then I hear through the phone, “Ilonka this will be very hard to listen to but I think Mo’s body is giving up.” I literally shit my pants at that moment. I hear her say that she wants to come over to turn on the Morphine pump. I carry myself together and say, “No we have to keep thinking straight.” Then I tell about the eye. “Stop I got it! Give the emergency treatment for epileptic seizures” says the care worker. It’s always standing ready, but this time I didn’t make that link yet. I apply the emergency medicine and slowly Mo is coming back! God dammit what a scare, not from this world. Doing eighty things at the same time and still not having the feeling that you’re doing enough. Ruud and Siem arrive home and things calm down.
From this point I’m writing again.
Today we actually had to go to the PMC but we chose for taking blood samples from home. Dad brought my blood to Utrecht and meanwhile we already got the results. All my blood values are good, unbelievable but true. Sunday we can start reducing the amount of Prednisone and hopefully thing will remain stable for a while.
Then some amazing news about the car. I have my own Mo-bile: a car which fits the electric chair! What a joy, we are very happy with this new addition. Siem has his driver’s license for a while now but who would have imaged that I would be the first one with a car, super funny! The coming weekend the weather should be nice so we hope we can go outside with all of us.
After a week of snow it suddenly became spring, free of charge. Lovely!! I am feeling not too bad and everyday I’m going outside in my new wheelchair. Today my brothers and sister in law are coming over again for dinner. Looking forward to that moment every week. And what do you think mom says! “Hey Mo, barbeque?!” That really gives me a spring feeling. Never before did we have a barbeque in February, but today we’re just doing it. Also my brothers and sister in law love the idea. We are enjoying to the fullest!!
Today we went to the PMC and it’s not looking good. Unfortunately we don’t have a lot of positive news. First taking blood samples, then on our way to the Oncologist.
“So Shymo, what have you got for me today?” Asks the Oncologist. Meanwhile I see him looking left and right. He frowns (“he noticed,” I think. “yes, of course he noticed…”).
I say “yes it’s going a bit better.
“Which part is going better?” Asks the Oncologist.
“Hm, I don’t know, I’m mostly tired”, I say.
“What’s going on with your eye?”, he asks next.
“Well I’m tired so I squeeze one eye shut” I answer.
“Anything more?” I remain silent and it really hurts us when we mention that the bit of function that I had in my arm is gone.
The oncologist is not happy: “For how long?”
“a bit more than a week”.
“Mo, you know what that means?”, the Oncologist asks while I’m looking at him. “The tumor grows.” Despite that we already came to that thought it hurts when your Oncologist says it. Currently there is no treatment available and even if the new treatment gets approved this month, we don’t know if we can get it. We’re going through the list of medication to see if we can reduce/make some changes; hopefully that decreases the tiredness a bit. Also, if I continue to see double, my eye has to be covered for a couple of hours a day. And if it continues they have to be dripped in case I fall asleep and don’t fully shut my eyes.
Summarized currently it really sucks. Despite, as everybody knows, I’ll keep on going. Every day I make the most of it and I’m having a lot of fun with my family and the people that visit me. Also I’m often very tired and because of that the blogs are taking more time than I want them to take.