Today was fine, everything went smooth. They still don’t know why I have this pain in my upper back and shoulders, because of that I had to take a combination of 80mg of prednisone and diazepam over the weekend. It works as a muscle relaxant and if it works you know it’s muscle strain. If this doesn’t work they might try another treatment, which might work. That could mean that the pain comes from the tumor or possibly from the infection located close by. The stitches have been removed from the puncture wound and looks all good so that is great.
Yesterday I received a Pico pump for my bed sore and burn. It creates a vacuum and improves the blood circulation! It will stay on for a week and means I don’t have to change band aids every day which is nice. It is very time consuming, about an hour. Next week we’ll see if it works and if so I’ll have to use it for three or four weeks. The healing is just taking far too long and I won’t curse anyone with this. It would be so nice if the healing goes quicker. I do have my expectations.
It is the 18th of March and we just listened to the press conference of the government. Obviously it scared us and we decided to go into self-quarantine with the four of us. Mam, dad, Zyara and myself. This to provide maximum protection for me. Also for the rest of the family of course, because I do need care around the clock and the person that takes care of me needs to be healthy. Almost everyday something happens, either crazy, funny or very kind. Like a kind neighbor who bring chocolate eggs for Easter to the front door (we are currently drowning in chocolate eggs); a friend who bring over a bunch of tulips; the baker who brings another pie; and a moment later a full grocery bag has been dropped at the front door. And yes, at some point we were out of toilet paper. Fortunately our neighbor came over to the front door again, this time with much appreciated toilet paper. Now there’s beautiful tulips everywhere in the house and since they’re my favorite flowers that makes me very happy!
From a lot of people I get multiple questions. “How are you coping with the Corona virus?”, “Are you not going crazy by being inside all day?” But it’s not that difficult for me. That is because it happens frequently that I’m inside for two weeks. The only difference is that I’m no living together with mom, dad and my sister. Which I don’t mind at all, because we’re in this together and are coping with each other. We live together and not along each other. The situation is calm and every day we think of something fun to do. Even if it’s just things like baking a cake, watching a movie or even having a nice chat with each other. Also I got used to being hospitalized. I think it’s comparable with the current situation since in the hospital I was in bed all day and the only person being on my side was my mother.
Don’t worry about me. I’m not going out and don’t intend to anytime soon. But it would be lovely if the sun comes out so my body can get some vitamins.
After the surgery when I went home if felt good and barely had any pain. Unfortunately the pain got worse and worse as I mentioned. Eventually sleeping on the couch downstairs was the only option left. As soon as lay down on my back or made any type of movement I burst out in tears and that went on for days. They increased my dose of prednisone and I had to start with diazepam. That did not go well. I took the diazepam Friday evening and I was knocked out until Saturday evening. As my dad says: “Diazepam make you feel well, but it also puts you like a dead horse in a wheelchair”, haha. After that I stopped taking it. At the moment I’m also not taking any medication against the tumors and that doesn’t feel good. Because no one knows when they’ll start growing again and how rapid…
The whole weekend I felt terrible but since Monday I start to feel better day by day. And why? No idea. The amount of prednisone got reduced by a bit and the pain is slowly reducing. Which is good. It is unbearable to lay on the couch with pain in your back all day. For the coming three to four weeks I have this vacuum pump on the wounds on my back and I am very curious about the result. It would make such a difference if these wounds are finally closed! I already have them for ages and it’s about time that my body can start using its energy for other things.
Today we went to the PMC. It was so quiet because of the coronavirus, but we were received with open arms. Due to safety I could only bring one person to the hospital. In this case it was with my father. Today I gave a lot of blood for research. They’ll investigate which substances react with my infections. Think about the gullet infection that I had in December. This way they’ll try to replace the prednisone in order to reduce the infections. There is the possibility that the infections are influencing the tumor. It could be the case since I am not showing any signs of further neurological decay.
The next steps for now would be to reduce the amount of prednisone and if everything goes well, start with my treatment again on Friday. They want to investigate what the reaction will be on my infections and inflammatory values while we reduce the amount of prednisone. If nothing comes out of the test than I’ll give new blood to start another investigation.
Yesterday we replaced the Pico pump and had a look at the wounds, it didn’t make me happy. The wounds reduced in size but there is still an infection. Maybe my expectations were a bit high. I expected a nice pink wound and not a red and bloody one. We put on another pump, we’ll remove that one in a week to have another look. I do hope it will improve and that I can feel relieved again.
I do want to let you know that I am always been taking care of very well. Especially now, during quarantine. The situation changed a bit, but here at home I’m never forgotten, never. The worst that can happen to me is that someone can’t hear me or that I’m not getting a snack. Well boo-hoo that is so sad, haha. And even that doesn’t happen because I’m still on prednisone and believe me: it makes you hungry. Prednisone is weird and I noticed that it doesn’t just messes with your appetite it also messes with your head. One time I was at a restaurant with Siem and we just ordered. The only thing at the table was a bowl of sugar cubes and I really have to stop myself from eating it. While I was not even up for eating that! Your brain is sending these constant signals that you have to eat and that is really weird. The internet also says “don’t get tempted”. Haha, well I need some extra weight so I’ll continue eating!
Siem, Mirte and Jip came by peaking through the window. They sat outside with coffee and I was inside. We could chat through Facetime and that was really nice! I’m so lucky with the people around me and I really appreciate it. I wouldn’t know how I otherwise would have developed as a person. I fear that it would have been a lot harder than the current situation.
All week the sun was out! You couldn’t make me happier. I roll to the balcony and look for a spot without wind. Lovely. Amazing what a bit of vitamin D can do to your body. When I’m inside and it’s raining I always have the feeling that I have to do something, but when the sun is out I can just lay down while it feels useful, haha. I get a tan quite quickly so this pale ghost is gone. If the sun stays out for a while you won’t recognize me anymore.
It is a bit of a pity that the results of the hospital are not back yet. This will take a lot longer because of the corona virus. I try to keep faith and enjoy the days as much as possible. The pain is now bearable. I hope it stays like that while we reduce the dose of prednisone and hopefully I’ll lose of lot of moisture the coming days. Because that is really bugging me at the moment. This time it’s all around my core and face. When I look into the mirror I don’t recognize myself, my face is so swollen. It also really hurts and limits me in doing things. This is not what I look like and I know at some point it will return to normal. I just keep that in mind to help me through these days.
Everyday I’m looking for recipes on the internet so my mother can test these with her oh so amazing cooking skills. Maybe I can convince here while we’re in quarantine to write a cookbook, haha. That would be amazing.
One day when I was hospitalized in December a very kind crafting lady came by. She asked if I would like to craft something with her. We went through the things that she made and I chose to do some embroidery with an embroidery hoop. I liked this so much! Immediately after I looked on the internet for what I needed and ordered it. So now I can work on punch needling while I’m at home which is a lot of fun. No idea if I’m good at it but practice makes perfect. That’s how I’ll creatively get through my days!