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.
