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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!