It really wasn’t. Sure I was nauseated for a longer period, but at least I had some relief during the day, or when my gums swelled up and I looked like a chipmunk, it only lasted for a couple of days. But these past 10 days have only given me short periods of pain and fever relief. Otherwise it has been going on non-stop.
I’ve continued to gain weight because of fluid retention. +12 kg. My legs are like logs and my ankles are so swollen. I do not recognize myself. Since ice cold water or other types of liquids is the only thing that helps me as an instant pain reliever when my mouth has been hurting, I have been drinking a lot myself and have now been restricted to a maximum of 1,5 liters of fluids per day, which is very hard for me as water is the only thing I am really craving. The doctors say that since I keep running a fever and my blood pressure may drop, it is better to have extra fluids though than too little.
The pain in my mouth has increased. I cry from pain every day I wake up. This is a tiny bit better since yesterday though, but I must keep eating quite high doses of morphine and this has really affected me. I have been hallucinating, seeing animated things in the room, especially animals. I’ve also seen people in the room. I have always known it hasn’t been for real, but it is still unpleasant. The most scary thing has been that I have been talking nonsense at times and also that I forget things and that I cannot focus. Sometimes I have had to rewrite a text message five times before it makes sense. I fall asleep easily, or I sort of phaseout and I instantly start dreaming or thinking about something. I can never remember what it’s about, just that it makes me feel uneasy. Tried to stop with the morphine on Friday and started scaling it down. It worked for about 24hours and then it was unbearable. Yesterday, I wasn’t able to speak for a couple of hours as it hurt so bad.
The insights I have had about death and what I want to do with the time that I have left has not changed. I still feel calm when I think about it and I have started planning my funeral, something that actually does not feel that strange at all. But if these are my last couple of weeks, couple of months, I really don’t want to feel this way and it makes me scared knowing that the next treatment is a scaled up version of the first one and if this is the way my body reacts to the first “milder” treatment,then how is it going to cope with the aftermaths of the second one…? I do not believe that treatment is always better than no treatment. First, you need to be presented with the facts and the alternatives. Something I am not so sure that the doctors can give me at this point.
At the moment, I do not know if I will even come home before the next treatment starts. As my white blood cells aren’t back and since I can’t get rid of this fever (the doctors do not know why that is) they can only speculate and hope that I will be better at the end of this coming week, be home for Christmas and then being readmitted. I do not care any longer whether it is specifically during the Christmas days that I will be at home. I just want to have a couple of days without a fever, without morphine and without feeling like crap.