As some of you probably already know I stopped with the most recent treatment and I have also finished radiotherapy by now. My biggest hope of course is that my arms will recover. At the moment I can do barely anything… Therefore I have written this blog together with Siem and my mother.
Today we start with blood tests, to end the treatment. The nurse is meeting us in the waiting room of the MRI to fill up the tubes. What I find very relaxing about the MRI is that you can pick if you want to watch a movie, listen to music or just silence, but the sound of the MRI is so loud that there actually is no silence. This time I decided to watch Shrek (part one remains the best). After the MRI we have a good hour before we have to go to the next appointment. We decide to have a sandwich in the hospital restaurant. It seemed to go well, but after five bites I tell that my hands starts to act weird. Then the tingling moves quite rapid to my shoulder. The three of us thought the same “there we go again!” It gets worse and worse, I become confused and can barely talk. I was talking with a twisted tongue and we decide to use the anti-epileptic spray. That is a nasal spray which really burns in your nose, pffff. Almost immediately tears are tearing down my cheeks, because it hurts that bad. I want to sleep but sitting straight up in a wheelchair that is not possible. Multiple times I slip away due to the tiredness. After twenty minutes my dad and I go the UMC to measure the mask and to get a CT scan. The mask still fits, which is good because then I don’t have get a new one fitted! At the end of this long day I’m finally having the CT scan. Monday we will start with the radiation treatment which is quite soon and we are hoping for positive results.
This morning I was laying in the sun and really enjoyed it. It was so relaxing! But after a while I said something which was not very clear. Mom asks me if I’m having an epileptic seizure. I tell her that’s not the case, but after a while did get confused and talking became harder. I wanted to get up and sit and dad had to hold me firmly for that, but it was too hard and eventually I pass out. When I recovered from that my dad tried to put me in my wheelchair but I pass out again.
That same evening the oncologist calls with the results of the MRI scan. Multiple spots have grown, also the spot which is causing the epileptic seizures. Next week we’ll start with radiation treatment. I’ll possible be hospitalized for five days.
Today I’ll be hospitalized in the PMC. I don’t feel too well so I’m not looking forward to it. Fortunately I only have to go for radiation treatment. At least we don’t have to drive up and down five times to Utrecht, however listening for an hour to Queen in the car is not bad! At home we have made the agreement that mom always stays with me when I’m hospitalized. Still dad visits us every evening. We think it will be five calm days (yeah right, we think!). I know many people at the hospital who always drop by for a chat. I doesn’t matter if it’s a doctor, nurse, cleaner, someone from the food trolly or anyone else from the staff, we always have the greatest time. But the first day does not go that well. I’m not feeling well. I have a lot of pain from the radiation and I’m even getting a fever. Yesterday I did get dexamethasone, that helped me during the day but it didn’t get me through the night. Today the plan was to start with prednisone, but for now I’ll have to stick to dexamethasone (which is even more fun…). And as cherry on the pie they also add tramadol to that. All in all it’s good that I’ve been hospitalized, because everything goes at a much faster pace.
As usual I had a conversation with my Oncologist. Softly speaking, it was shit. He is shocked by how much I have deteriorated in a week. It doesn’t match in his mind, based on the results of the scan (a bit of grown), with how bad I’m doing. We hope that the radiation treatment will result in a lot of positive development and we keep hoping for a new treatment. We are so done with this stupid cancer. When is it finally enough?!
Every day we race with the bed through three hospitals to get to the radiation treatment room. Also the staff who joins me always makes sure I feel comfortable. The team of the radiation treatment always take their time to position me well; an exact task where nothing can be left to faith. The radiation treatment itself fortunately doesn’t take long. Only the mask that they fit over your head doesn’t feel comfortable, but I’m not claustrophobic. For the rest I endure it just fine! Mom tells me that every time when she has to leave me in that room she thinks about how proud she is of me and that I’m strong. People are impressed how I’m going through with all this. The days fly by and after the radiation treatment I’m on my way home.
This is a “you-better-sit-down”-message. I have been thinking since yesterday how I’m going to tell this. Yesterday I had my last radiation treatment after which we spoke with the Oncologist about follow-up treatments and future perspectives. In my case the future perspectives are often, hopeless, negative and just shit. And then I’m still putting it mildly. Meanwhile almost four years have passed. Four years ago I started walking badly and so my first problems were noticed. After investigating, about six months later, we got told that I have cancer. Aggressive, malicious, fast growing and also rare. The fact is that no one has every survived this; I am the longest living so far. We have also heard over a hundred times that there is no cure. And what is especially bothering me is that a lot of things were the last time. Like cycling, walking, going somewhere spontaneously, chilling with my friends and laying in bed with Siem. You keep thinking that these things will come back but you can’t assume it. And still I’m enjoying life to the fullest.
The Oncologist will have a conversation with our family doctor, the comfort team and homecare. I asked the Oncologist why but I did not get a straight answer. This gives me the feeling that I’ve entered my last weeks. I cannot explain how that feels. Still I get back to my sentence: “giving up is not an option”, which makes him smile again. To that he responds with: “I think we all know that Shymo”. He expresses his admiration and respect, which makes me feel well. I told him I’ll do whatever it takes and will try any experimental treatment. He is my hero and I told him. Everyday there are still new solutions, trials and results coming in, so there still is hope! Most people have eleven months when they get my diagnose and every time they confront me with that I tell them that I’m already living for four years with this. They call it a miracle. But an unusual case calls for an unusual solution. Meanwhile we discuss a new type of treatment with the Oncologist. “I want to go for it!” I say, when they were discussing the risks of the treatment. The Oncologist grabbed my shoulder, looked me in the eye and said: “I’m with you”.
Today is a good day as it’s my oldest brother’s birthday! I have a nice surprise for him: we start to notice small improvements and we assume it’s because of the radiation treatment. My right arm can move a bit up and on my left side there is a bit more improvement in my fingers. I also notices little spasms but of course this comes together with sore muscles. And you can guess… I’m terribly tired. It would be so nice if I could be on my phone again for a bit, but for now that’s not an option. On 30 September I stopped with the prednisone. Eating and drinking is going well but the expectation is that it will get less again over time. That’s why I can pick whatever I want to eat. That’s why I can pick whatever I want to eat. And I don’t mind that at all! Think about moussaka, endive with mashed potatoes, chicken… actually just anything that comes from my mom’s kitchen, because she is an amazing cook.
As of today I’m making big progress. How come…? Even the Oncologist says “something with a capital P” (Prednisone, of course). But Tuesday I could even meet up with some people in our quarantine tent. For Wednesday we have planned a conversation with the Oncologist, family doctor, the comfort team and home care. The goal of the conversation is to discuss for when I need more caretaking in the future. Then that’s sorted and everybody has their tasks. Meanwhile there is a high-lowbed and a hoist at home. Fun is different, because you don’t want these sort of things.
We had a good conversation on Wednesday (despite the topic) and we have more clarity. I’m never allowed again to have a full weekend of pain. Afterwards we discussed with the family how lucky we are. We have an intense committed Oncologist, a lovely home doctor and such sweet people of home care and the comfort team. Today we have started with a new experimental treatment and we are curious what it will bring.
Today I’m more tired than the last recent days, but then yesterday was quite intense. It also became a habit that after breakfast I’ll have a nap. In the afternoon my physiotherapist will come over and I can’t wait to show here that I can move my arms up again.At least, for a few seconds. My training immediately becomes more intense. I don’t want to lose my arms, so we’re going for muscles! The sweetest physiotherapist in the world is very pleased with the progress. Later in the afternoon the occupational therapist came by. She had lots of tips and is doing her utmost best. I find that very special.
Since my hands are not working that well I arranged that my friends can schedule appointments with my mom to meet up. I can’t guarantee that I can go through but week is scheduled with plenty of meet ups. Siem, Zyara and dad build a tent on the balcony with a heater! Genius! Because of that we can have a coffee with the sweet people that have been supporting us and helped with for example the groceries. I want to share that we have an amazing network around us. All amazing people in team Mo, while it does continue to feel strange to say that.
Last night at about four o’clock I woke my dad. My arm fell of the chair and out of habit I put it back on the chair. So way to loud I say: “DAD! DAD!!! Look at this!” I throw my arms in the air and hear my dad say: “How great Mo!” He didn’t realize it yet of course, haha. I fall asleep right after and the next morning I give the whole family a show.
There it is, I’m losing my hair. For the whole week I had an itch and pain on my head because of the radiation. To reduce the itch we combed out my hair. Careful of course because we don’t want to pull out any additional hair. I can’t be sad about it… Maybe because I’ve gone through this a couple of times now of because of the amazing wig that I got from Move Hair Solutions. And I also have worse things on my mind. We are not really thinking about what if it goes any worse. We still believe in the miracle, but the clock is ticking.