moeizame zomer

Shymo’s blog: tiresome summer

01-09-20

During the ‘prednisoneweek’ I ate a lot and everything tasted great. But this story does have a downside. I immediately notice that that my body starts to itch like crazy (from the inside), as I’m holding more moisture. But as soon as I stop taking the prednisone the pain comes back. At home we read this really good article from a doctor, who did research about the tiredness that comes along with muscular rheumatism. By reading this I started to recognize some of it. But what can we do about it? Going back to the prednisone is currently not an option for me. My oncologist and I came to the conclusion that Prednisone and I have a love-hate relationship.

Frequently we get asked what I’m exactly suffering from. Hmm, exactly? Do you have a minute? Often this is a question asked out of politeness and people don’t want to actually hear the whole answer. So often the answer to how I’m doing is “fine”.

But still, the answer will be as precise as possible for the moment, because as soon as I’ve finished mentioning everything something else has to be added to the list. Let’s start with having a rare kind of brain stem cancer and a paraplegia, which makes me fully dependent of my wheelchair. Besides I also have a defective thyroid gland, which probably was due to one of the many treatments that I had. Also I have to deal with muscular rheumatism which is only controllable when I’m getting an injection, which cannot be combined with other types of medication that I’m taking. This rheumatism pain is indescribable and is influencing my mood (haha yes that’s possible, even positive Shymo gets angry sometimes!). And then we haven’t even started yet about the physical discomfort that comes along with a paraplegia. These are unbearable, but it does make you very creative. I also suffer from epileptic seizures and am losing the ability to use my hands. I could make the list even longer, but it won’t make anyone happy.

Sometimes people don’t know how to respond, which makes total sense and it doesn’t matter. There’s no such thing as a script on how to react. “Oh, but you’re still doing well?” and “to me it seems she’s not even bothered” are reactions that I get a lot and am totally done with. Or people who start to tell what they have gone through. Instead I prefer it that people just don’t know what to say. This should make you feel speechless right?
Most people can’t imagine what my life looks like. Even at home it is sometimes hard to understand. Even I am not sure what I’m going through. A while ago an outsider even told me that it “might be all just in my head” the puking and not being able to eat. That upsets me.

02-09-20

Sometimes before we go to the hospital I already have the feeling that it will become a weird day. Today is such a day. We had to be there at 09:00 for a blood test, but we told the multiple times that it’s too early and so we eventually arrived at 09:32 at the PMC. As it was crowded, the blood test was taken at another department. I always do this with my dad. Meanwhile my oncologist already arrived to pick me up, but had to reschedule due to the delay. At that moment I have to go to the bathroom, so when I’m there we receive a phone call from the nurse “that she lost us”. After that we could go straight through to the meeting room.

First a neurological examination. They observe that I have not lost any more of my strength, which makes the neurologist not unhappy. I also mentioned that I haven’t had an epileptic seizure for 6 days!! We are talking, options are being discussed and on Friday we have a phone appointment with my oncologist. He wants the MRI to be next week, but when growth is shown on the scan I’ll have to stop with the treatment. Without a new treatment. For now the recent developments are being processed and on Friday I hope that we’re all on the same page. That it’s not going too well as I’ve stopped with the prednisone, is a fact. But that has nothing to do with the neurological part. Again we are up against a difficult choice. Personally I feel that it’s not going well and that is also what I told my oncologist. He agrees, and I also noticed during our conversation that it makes him feel sad. It does something to him. Mom, dad and I have till Friday to decide about the MRI; coming Wednesday or in three weeks. Also my oncologist has to think about it. But if we choose for this Wednesday and there are signs of growth, the treatment will stop and there currently is nothing to replace it with. You can assume that we choose to continue for another three weeks. Because if something happens meanwhile, the scan can be scheduled in a matter of days. We want to continue as long as possible as we truly believe that it could work. And I don’t believe that after only eight weeks you can already be sure if a treatment works or not. Also a new plan has to be made for the prednisone, but my oncologist is looking for a way in the middle. For example two times a day fifteen milligrams, but then I will become the Michelin man again.
The doctor gave kind compliments; he admires how I deal with my illness. And that “I show up every week and undergo everything.” I enjoy hearing that.

09-09-20

After the euphoria of last week we had a terrible weekend where on Saturday morning it all went wrong, due to a big epileptic seizure. Which repeated on Sunday. As every week we left this morning to go to the PMC. Of course we gave notice on Monday already about the problems such as new wounds, epileptic seizures and a stomach and intestines that are not functioning properly. The dose of ‘extra’ medicine for the epilepsy is being doubled. The oncologist tells us that the epileptic seizures don’t have to mean that the tumor is growing. Any patient that has undergone radiation treatment on the head can develop epilepsy due to scar tissue. Apparently the probe has to be replaced next week (which is routine). But the problem has to be solved, otherwise we’re still stuck with it. The blood results are not telling what’s going on. So as I always say: bummer with the hat on. Multiple things are in the lab cultivating. Hopefully that will tell us something, which enables new treatments. I’m still able to eat but drinking is nearly impossible, as I almost choke right after taking a sip. So we try to maintain it through my probe. I drives us mad, that almost nothing can be done in a normal manner anymore. But we continue to hope! After almost four years something has to work right? In about a month we’ll have the result from the new MRI. Unless meanwhile something happens, but we will not assume that it will. Let’s go!

16-09-2020

Today we went a bit later to the hospital than usual. It was not a bad week. I went outside and ate BBQ with Char and Gyl and I even went to the beach. So we thought to share some positivity. But before we left this morning I had a minor epileptic seizure but it faded away soon. When we were in the car just before entering the highway it went wrong, because the epilepsy came back and was intense. Lucky us there was only traffic light ahead and there we could spray the medication. Extremely tired, not approachable and weak I arrived at the PMC. Fortunately the nurse immediately noticed what was going on. She made some calls and we could go to a room with a bed. When we arrived I fell asleep almost immediately. I didn’t notice much from the blood test and weighing. Then they came to place a second probe, a stomach probe. That was painful but they managed after ten minutes. I went back to sleep but then my oncologist arrived. Normally we go to him, which computer wise is a lot more convenient. After sharing our modest “list of the week”, came the conclusion of the doctor: this week the last time for this treatment, so end of treatment. That was a hard one to swallow… A period of radiation treatment is therefore unavoidable.

After that the nurse pops by. She came to tell us that they will take a picture, to see if the new probe is fitted correctly. Meanwhile dad gets a phone call that tells us that tomorrow at 12:15 we have to be here again, for an MRI. The nurse tells us that the probe is not fitted correctly, it’s curled up in my esophagus. Sigh… The probe is being pulled up and pushed down again. I notice that my mother is having a hard time with it. Fortunately they manage to fit the probe correctly. The info about the coming period trickles in. Tomorrow we will also have a meeting with the radiologist and the radiation mask has to be adjusted. Afterwards I’ll also have a CT-scan. Meanwhile the treatment is going through the drip and we are waiting for what’s coming next…
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Corona verhalen

Quarantine experiences from Shymo’s environment

Shymo has been in quarantine since March. By reading her blogs you have been able to experience a bit of how she experiences this and it has not been easy. Family and friends who can’t come over to give her a hug and who at the beginning of the quarantine only could talk to Shymo in front of the window with a phone. But how is this period for the people around Shymo? How is it not being able to see your (girl)friend or sister and how is it to be in quarantine to protect your daughter/sister/(girl)friend? Some of the people who have gone through this have written down what this experience has done to them and still does.

Siem

When in march the coronavirus broke out in the Netherlands and our prime minister was holding the press conference where he explained the safety measures, the door went shut at Shymo’s home. No one in and no one out. Because for Mo corona is life-threatening and fighting against one life-threatening decease seems enough for all of us. So out of the blue there was a real quarantine. I was not with Mo at the time, which meant that I could not see her. This made perfect sense but was hard to cope with. Especially because there was no clarity on how long all of this would take and when I would be able to hold Mo again. So in an instant, besides the fight to cure Mo, we got into another fight with another danger.

For safety of Mo and due to the lack of information about the virus we had to live separate from each other for three months. A couple times a week I sat in front of the window to talk. Those moments where nice, because we were able to see each other, but I also experienced these moments as very painful. The saying goodbye, not holding each other and losing precious time with each other was hard to deal with. In the life that we share it’s so important that you can there for each other and with each other. And that in an instant we were not able to see each other on a daily base anymore was very hard for me to accept; such as the moments I could not be there to take care for Mo, but especially the when she felt terrible and I could not be there.

Because of that I felt the necessity to, whenever the possibility would arrive, to move in with Mo. After four months that moment arrived, amazing! After being in quarantine for two weeks and an antibody test, we were quite certain that I did not have or already had corona. On Monday the 29th of June I moved in with Mo. It was amazing and the first hug after such a long time felt magical. We belong with each other and felt that immediately from the first second again. After an hour it felt like we never had been separated from each other. I could not get happier, amazing! Life as it is now remains complex with corona because the rest of my life is on hold. But the most important thing is that Mo and I can spend time together, and I’m always there for her. A big problem solved, which gives me a big smile on my and Mo’s face!

Ilonka and Ruud

Back to the second of March. Shymo is being hospitalized in the Princes Maxima Centre. On the third of March Mo undergoes surgery. She undergoes a biopsy. During that week of the hospitalization we get the feeling that the coronavirus is on its way. Meanwhile we’re all back home and it’s the 13th of March, Friday the 13th. The whole week it’s been about corona on the news. On the 14th of March I (Ilonka) have a workshop in my agenda. I look at Ruud: “is it wise?”. At that moment I call me friend who I’m doing the workshop with for her 50th birthday. Meanwhile Ruud calls the company who gives the workshop. We decide to go. It didn’t feel right but we had an amazing day. On the 15th of March at 19:00 there is a press conference from our prime minister. He says a lot but I’m not hearing it anymore. When our prime minister is done I hear myself say to my daughters and Ruud: “We are going in lockdown. No one in and no one out”. It’s only for three weeks, we think. I send a message to my customers, friends and family where I explain that we want to protect Mo as much as possible. Everybody, and I mean everybody, fully understands.

Soon we get stuck on practical matters. For instance, Mo has to go to the hospital once a week, fand the groceries which we get delivered once a week will continue in such matter, right? It was chaos, madness. After two and half weeks we were finally able to get groceries delivered. And even at that moment there were no cleaning products, tissues, pasta, rice, canned beans or toilet paper available. NO TOILETPAPER!!! Where do we have to wipe our … with? Often people laugh about how stocked our shelves are – just like a supermarket! – so with 12 rolls of paper towels and some creativity we managed. One friend reaches out to me and asks if I still have some pasta available? I’ve been to multiple stores but there isn’t any. Of course I say, do you want spaghetti, penne, macaroni, tagliatelle, fusilli, gnocchi or ravioli…? Oh and I also have some whole grain lasagna. To which my friend says, “ehh, anything will do”. She is secretly impressed as she goes silent. “Enjoy your dinner” I yell and I don’t need anything back because we have plenty. We also ask for help from our surroundings, something we learned when we founded Stichting Help Mo Nu! Friends went for us to the market, the neighbor across helped us with getting some toilet paper and it keeps on going like this.

The lockdown got extended and so did our quarantine. “Will we make it financially?” I ask Ruud. “Yes, we’ll manage as we won’t go on holiday this year”. Problem solved, we think. Then one of our ministers mentions that we’ll get four thousand euros. If we really watch our spending we’ll manage! “No…” says the minister with a big smile. “This is not for the self-employed people, they have chosen for this!” he says. I hear myself yelling to the TV: “Yeah right you pancake! We chose that our daughter got sick and that covid becomes part of our life. with your pinocchio nose, idiot!”. “Calm down” says Ruud. “He can’t hear you”.

We struggle on. Days become weeks, weeks become months. When we suddenly realize, we haven’t seen our youngest son for five months. We arrange transportation and finally on Sunday the 12th of June the whole family is complete in the garden on appropriate distance. Amazing. Meanwhile it’s the end of August and we’re still struggling on. But fortunately lots of friends and our family make it possible to carry on. Unimaginable all the things that are being done for us. No one knows how long it will take, but we are so done with this! With lots of patience, love and positivity we’ll get through. Covid is not even our biggest problem.

Gylian and Charlotte

From March till July we have been in quarantine together. No one in and no one out, to protect ourselves and the people around us. Groceries were delivered and we only went outside if we really had to. After a few weeks of quarantine we started with a daily walk to get some exercise and fresh air. We were coping well with the two of us. We both did our own thing and the apartment is big enough to have our own space. But it wasn’t all ‘just fine’. The worst was that we were not able to see our family. From the infamous press conference the Korver residence went in full lockdown, to protect Shymo. People could visit, but were not allowed to come in. In front of the window we could talk through our phones, it worked for the time being, but wasn’t ideal.

We were not able to see Shymo from March till June. As we were sticking to the rules as good as possible, we avoided public transport during lockdown and were bound to our apartment in Amsterdam. We did call and facetime a lot with Shymo, which was fun, but never enough. It were snapshots and were just not seeing the whole picture. You can’t look at each other, or hug… Eventually we had to buy a car because of a new job and that instantly gave us some more freedom. From that moment on we could visit at least once a week to sit and chat in front of the windows with Shymo and the family, that was so nice! We also could visit for Shymo and Zyara’s birthday and visited often to have a coffee in front of the window. Because of the low chance of spreading in the open air it was decided after a while that Shymo could go outside. From that moment on we could sit in the garden and have a meal together with Shymo without a window separating us.

Currently we visit Shymo at least once a week and it’s so nice that we can see her without being a direct danger to her, but it remains terrible that we cannot give her a hug.

We stick to the guidelines as good as possible, to protect Shymo and all the other people who have an increased risk. If everybody contributes in that manner we’ll get rid of this terrible situation as soon as possible.

Zyara

How I experience(d) quarantine? Well, it wasn’t easy. It is what it is so you want to make the best out of it. The first period I experienced it as cozy where I could have quality time with Mo, while everybody around me was complaining that it was taking too long. And now we’re still here while everybody else has been on vacation. And us? We’re still inside since March and nothing has changed. That I’m with Mo all the time also means that I haven’t been with Mats for a long time. Which is not nice.

Now it’s almost September and classes are starting soon: how are we dealing with that? That is just one of the questions to which you have to figure out an answer yourself and it will continue to be like that for a while. As my dad is at home more often I decided to join him with chores around the house. What else is there to do? I can’t sit on the couch the whole day. Now Siem has been around for two months, which is good. We’re together when Mo, Mom and Dad are at the hospital. We cope on like that and we’ll see we can and cannot do and when.

Corona has not made things easier for us, but the positive vibe is still there, to call it like that. Otherwise it would have been a lot harder.

Mirte

Because of corona it is dangerous to get too close to Mo. Because of that Mo went in to quarantine. The only possibility to see her was through the window. Shymo was inside in her wheelchair with Siem, and me and the girls were outside. We used Facetime to talk to each other and could see each other in real life!

I enjoyed being able to see Shymo through that way and to chat, but you did notice it did not feel ‘real’. On her birthday Ruud transformed the doorway with a plastic screen. Because of that we could see each other!
Since recently I’m allowed on the balcony. We go through the house with a facemask to get to the balcony. Mo is sitting in her chair in front of the sliding doors, which are allowed to go open! So now it feels like I’m really visiting her at home. It’s hard not to jump at her and cuddle but I’m very happy that I can see her in ‘real’ life.