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I am currently very happy about our decision to get an apartment for my uncle in our city, an apartment very close to the rest of the family. But we can only be happy about the fact that he is now living close to us all, the recent events are rather sad, but we are more and more used to bad news. After the surgery, we knew the result was a complete resection of his tumor, but we were aware about the definition of the term “complete”, but I explained in another post what it means. A complete resection was still good, the only bad news by then was that the diagnosis Oligoastrocytoma WHO Grade III changed to Glioblastoma Multiforme WHO Grade IV, and we got told that the result would also be a much worse prognosis. But after the complete resection, there was a fast recovery from the surgery, everything seemed to look better and better.

Since complete resection meant that almost everything was removed except for the tiny percentage that can’t be removed due to the fact that they could destroy healthy parts of the brain, we knew the remaining bad cells would have to be fought with radiotherapy and chemotherapy. My uncle completed both therapies and we all were surprised that he could take both very well too. Now there should be a break, and some tests on a regular basis to find out if and how fast the bad cells would grow again. However, the plan has changed, he is already back in the hospital as we had to call an ambulance for him on last friday.  I was called by my aunt that day as she said he was very apathetic, but when he talked at all, he said very confusing things. It took me some minutes to get there and I knew my aunt called the ambulance already. Something was clearly wrong with him, and since then he is in the hospital again.

He is now in the hospital since four days, and we visited him every day. My uncle is already regular there and known by the nurses and doctors, but we are already regulars there too and known. On the second day we got a news, the doctor said it would not really be a good one, but also not a bad one. His remaining tumor cells did not grow, but they also didn’t suffer from the radiotherapy or chemotherapy. Yes, we all thought that is not too good, but that the cells didn’t grow since the surgery, that was also not a too bad news. But then we talked with him about the recent psychic symptoms, and they told us that he clearly developed a psychosis, that was the recent really bad news. But why? Well, when we heard his tumor diagnosis first, we all realized that there would be all kind of bad possibilities in the future, and after reading I heard that a psychosis would be a possibility as well.

But it’s not easy, and I am very into this subject already since I have read way too much. I understood the doctor when he said, that this could have been caused my the fear of death, despair, emotional stress and so on. But I also understood the doctor when he said it could simply be caused by the fact that there was a tumor, and that there are still remaining cells in that lobe, the area where a psychosis could be caused. Further more, we all knew that his brain was still swollen from the radiotherapy, even if he got cortisone, and that could lead to the same problem. But since I have read studies over studies of every single aspect of the disease and medication, I asked them in the hospital if they could exclude the possibility that the psychosis is caused by his antiepileptics agent called Keppra that he got in a very high dose. One of the doctors replied astonished “Yeah, you make a good point, we want to try an alternative to find that out”.

I tell you something, I hope not that this will be the case, but if you ever get into a similar situation where someone in your family gets a disease, do your homework and read as much as you can. It’s not that I don’t trust doctors, but if you are allowed to help your family member, you’ll be a much greater help if you understand a bit of the subject matter. You will also be a help for the rest of the family in case they don’t understand every single word of the doctors, like my grandma or grandpa for example. But what is even more important, as soon as doctors notice that you understand a bit of medical jargon, most of them will stop to spare you the details, and this is very important to really understand what they are doing. This shouldn’t be played to look good, they do know more than you anyway, the purpose should be to get as much information’s as possible.

I suggested my family to write down questions, to research, and to combine everything, and the result is that the doctors will stop to talk with you as if you wouldn’t understand the disease or the following procedures. I don’t say that you should read discussion forums or the like, get your information’s from hospital websites or universities and the like. I got the impression that doctors spare you the details because they don’t want to confuse you more, but as soon as they notice that you already understand certain things, they will give you more input. I am honest with them, I tell them if I understand something very well, and I tell them if I’d like to get something explained that they told me. I usually tell them that I did my homework, but I always mention that I would appreciate the opinion of them as doctors, that’s where they notice that you don’t just want to play the wise guy. After I mentioned the Keppra for example, the doctor was completely honest with us and said that they have this possibility already on the list, maybe he wouldn’t have told us otherwise.

Talking about myself and the rest of the family, we do already get used to the bad facts, except for my grandma maybe, she is pretty nervous about all this. I am not saying that all others are not sad that my uncle goes through all this, but at some point you really realize that it wouldn’t be very effective if you in melancholy every day. I am not sure if our current strength will always be there, as I don’t know yet if and when there will be a real downward spiral, but currently we just want to be a strong army of allies for my uncle, we believe that this will help him in this battle. Of course he might not notice, now that there are even symptoms of a psychosis, but it’s also not clear yet if the symptoms will stay. But even if, we’ll try not to get into a bad mood for too long, because too much sadness could just complicate the things.

Now we do just know that my uncle will have to stay in the hospital again for some time until we know more and until the situation improved. We are also very sure that he needs even more help from the psychosocial oncology. We wish him strength, and we wish that his condition can improve again.

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8 Comments »

  1. I’m sorry to hear that things are not going so well with your uncle. Your advice is good about trying to understand the illness and asking questions. Wishing you all the best.I’ll be in touch.

    • Thank you Vanda. It was a shock again, but to be honest, I am more shocked about myself and that I get used to those situations but I assume it’s some kind of a protective mode that sets in, and apart from that, everyone takes it different, like grandma for example. My uncle came into the hospital, and one day later one of his youngest daughters had birthday, so, it seems we play our role, we have to, we try to protect the kids and so on… we celebrated her birthday anyway and did our best to explain her that he is in best hands, and that we will celebrate her birthday again with her father, I hope this will be the case. When the situation improves, we will visit him with the kids as well, it’s just not the right time yet.

  2. I am so ssorry too dear Dennis, I pray for your uncle and for your family, I hope and wish everything goes good for him and his situation improves again. My wishes and love, nia

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