Rough times

It has been a long time that you have read me my friends, I know. Obviously there are some reasons for that. I have had a rough time because of some complications. First of all there was my double J-stent that wasn’t singing anymore, and when it was singing it was very bad I assure you. The next thing I had was a nerve pain I had in my lower area. Two complications that seem little but that made my life hell. I don’t have any side-effects of the chemo and that is awesome but then I have these pains that are a consequence of my previous therapy that hurt me every day and made me not have a life anymore (even less then I already had).

What was going on was that some days the stent started hurting in my lower back and when that started, I knew my day was ruined. There isn’t any painkiller that could help me so I had to endure the pain till it was gone. That was hell. Seriously, I could only be in the couch and do nothing or be angry at anyone who was at home. In February I asked the doctor in the hospital at the oncology department to have it taken out because it limited my freedom of movement so much that it made me very sad and this is a feeling that I really have to avoid. She had a discussion with the urologists and they were very reluctant to take it out. But they made a compromise and said they would take it out a day to see and if it didn’t work, they would put another one in. This happened just this week. I went to the hospital on Monday thinking they would take it out with an operation and I was ready for it. I was there at 0815hr and at 0915hr someone came to take me to have a function measurement. I didn’t know what that was so I searched the net for it. Holy shit!! My stress factor rose up to 200 I think. When I arrived at the urology department a nice young nurse welcomed me. She told me that a doctor would take out my stent. I was completely in chaos in my head. I thought I would have an operation and that they would put me to sleep. But instead I first thought I would have a function measuring of my bladder (which is a horrible procedure) and now they were going to take out this stent without anesthetics?? So I could only cry. Everything came out, I was not only stressed by what was going to happen, but everything, the whole period with pain and mental stress just came loose. And I couldn’t stop my tears from falling. I was so upset. I just wanted everything to be over. I was fed up with it. The young nurse was so sweet and supportive. Seriously, she deserves a medal. She was able to calm me down so well. She explained the procedure and told me it wouldn’t hurt and would only take two minutes. She was fantastic!! I was still crying when the doctor came in but I believed her, the young nurse. She told me she was going to stick with me and she did. The procedure took five minutes because one of the assistants tried first. Then the doctor noticed that I didn’t like it anymore and she took the stent out in two minutes. It didn’t hurt. It was of course not a very pleasant feeling having a tube taken out of your urethra, but in the end it was ok. I aways thought it was a hard piece of material but it is just a stupid sort of rubber tube. (I took it home with me, the 24cm of ugly bastard)


But I assure you that I got through it mainly because of the support of that nurse. At a certain moment she was even ordering me to breath in and out. I must have looked like a drunken woman in labor. That nurse was my champion! But the day after, my operation was scheduled to put a new stent in. I assure you that I was very sad, but as I was waiting in the waiting area in my bed to go t the operation room, I figured it just wasn’t the time for it. Everything has its time and it wasn’t time yet to go without stent. I have to take it step by step and this stent is necessary to protect my kidney the doctor told me. So I had no choice. I put in my mind that this was just a step to my complete healing. First the chemotherapy and afterwards my body can heal from the complications little by little. I just have to continue the fight and hold on.

The second thing that was making my life hell was that annoying nerve pain I have on a small piece of flesh in my vagina which seemed to be a part of my hymen. It is such a tiny spot but it seems that it has tentakels like and octopus that go everywhere over there and make a mess. This is unfortunately a consequence of the radiation that I had during my first therapy. I had it checked several times in the hospital and not a single doctor came up with a solution for it. I got completely crazy so I went for a second opinion and went to see another professor gynecologist and he said (like the previous one) that he couldn’t do nothing about that. The doctors at the oncology day clinic gave me a cream to put on it. They told me it could take up to eight weeks before it works or not works. And I smeared for eight weeks like a crazy woman and nothing changed. I couldn’t move anymore or do anything anymore because of it. It gave a weird sensation inside and it hurt sometimes and sometimes it itched like hell. I couldn’t sit on a chair or walk anymore. Basically I was locked up in my own house. It was my prison because of those two things. That wasn’t nice because it started to work on my mood as well. I have always been positive but this was pulling me down. I started to look and act like Cujo every time someone asked me something. Tired of the pain and angry.

I had to find something that helped me because I couldn’t be positive anymore and that is the main thing for my healing. But then one day I told my nurse that always takes my blood about this issue. She told me she had had an operation and doctors touched her nerve system and she had similar complaints. She told me about this medication that could help. I asked my private doctor and he prescribed it to me. Since three weeks it goes better. I can walk again, sit on any chair and my mood is back; hence the blog writing. God damned motherfuckers!! Almost three months I suffered from this pain and no doctor in the hospital could help me. I have learned another thing. I have to ask, ask, ask in the hospital because everybody has his or her own specialty and they all work in their own box. They don’t think further.  That is apparently my own task. I won’t make that mistake anymore, but please…. I was in pain for over two months! But anyway, that is done, the pain is less now.

But I haven’t told you the best thing that happened during this period yet? Well, after nine chemo sessions an MRI scan is taken of my complete body in order to check the progress of the therapy. Remember that the professor told me that I was in bad papers and had only a small chance of healing. When I had the scan they told me I would know the results the week after. Unfortunately my blood wasn’t good enough to get chemo that week so I wouldn’t be in the hospital for chemo and couldn’t ask for the results. Then I called the hospital to know more. They told me that the doctors still had to have a meeting about it that same Thursday evening and that I would know about it the week after. I went crazy! Two weeks later, are they nuts?? So I asked her if there was a possibility to know it sooner. I could call on Friday she told me on the phone. Jesus Christ what an operation to get the results of my own scan! I asked my darling sidekick Saar to make the call on Friday because I was way to nervous. Saar and Erica my stepsister were both by my side so I wouldn’t be alone when I heard the news. When she was on the phone, the first thing I heard the doctor say was (my ear was glued to the phone that Saar had in her hands) that they are seeing positive signs. I couldn’t handle it anymore, I started crying.  He continued to explain that all the tumors on every spot in my body had shrunk. They even saw a spot they hadn’t seen before but it was the rest of a tumor. He said that this was the second best news anyone in my situation can get. The best one off course is that everything is gone but the second one is that the therapy is working! The doctor was very positive and happy. And obviously so were we!! Saar, Erica and me were crying and laughing of happiness.


What a news!! Nobody had expected this I am sure! But I always believed in it, although I was in so much stress when we had to make the phone call. But this was great news. I didn’t immediately knew how to act. I didn’t really believed it immediately. It was only when my brother arrived and when I saw his overwhelming happy face that I started believing it.

And honestly I believe the chemo is only a part of the reason that I am healing. I’ll explain later. That good news was exactly what I needed at that moment.


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