This Is Something We Didn’t Want To Hear


I actually planned to show you some of the photos I shot during my hikes, and I maybe will do this the days or in the evening to distract myself, but now I am still a bit sad. As I wrote in another post, my uncle got diagnosed with Oligoastrocytoma WHO Grade III, but yesterday we got another shock, they changed the diagnosis and told us that it is a Glioblastoma Multiforme WHO Grade IV. I can not tell you how sad I was when I heard that, because due to all the reading, I am very aware what that means. With the first diagnosis, they told us that the diagnosis would be right with a high certainty, but they also told us that the diagnosis could change as they tested one sample in our city and one sample in another lab in Hamburg. As far as we understand, the one lab made a fast test, and the other lab would make a more complex test, and would either confirm or change the diagnosis. As one doctor told us that the diagnosis should be right with a high certainty, we did completely blind out that we could hear another diagnosis. That’s basically how we went to the other appointment yesterday, and it literally destroyed us when we heard the new diagnosis.

Yesterday, I was in a state, it felt as if my whole body was frozen, especially my head. At first I didn’t have a lot of feelings, and the state I was in pretty much reminded me of the time when I suffered from depression. Hours later, it felt as if the reality came through, I now started to realize what we just heard, and I had mixed feeling and didn’t know if it was sadness, anger, fear, helplessness or all of it together. While the first diagnosis was not the best one either, the new diagnosis was heartbreaking, it was like someone hit me with a very big stone. With the diagnosis, the prognosis pretty much changes now too, they told us that the best outcome would be 3 years or a little bit more, but they mentioned that they never saw one in our hospital who made it that long with this diagnosis. They were calm, and explained us that we must start to realize that we probably rather talk about 1 year, or maybe even 2 years, but they explained that it could also be about months. My uncle was completely broken, all of us were, because we started to familiarise with the first diagnosis, which sounded way better.

Currently, my uncle was not in a bad condition anymore, I was surprised how thin his scar was and how it healed so fast, I was happy that he got a better mood and optimism with every new day, we went out together and he generally looked great and we all were sure it would be a very fast progress. Then this, a big container of hope gets crushed to the size of a sandcorn. Now it’s like a restart, we need to start freshly to motivate my uncle to enjoy the time anyway, just with the difference that we can not tell him anymore that he will probably make a decade or two. The doctors clearly told us, that hope and all that is great, but that we definitely must realize that this is one of the fastest growing and aggressive brain tumor types they know, and that we must somehow get used to the idea that a relapse will not take much time. They also told us that there are a few wonder cases in the statistics, but they said that he still should do the radiotherapy, but that it would just be a life-extending step, further more they do now definitely suggested to add the chemotherapy afterwards. This brings another question on the table that we didn’t ask yet, but my uncle wants to ask this question and I can understand it… How much sense does it make to go through all this? Will it just add a few months? I can understand that my uncle is torn between doing all this or skipping all this. Let me be completely honest with you, I didn’t tell it my uncle, but if I would be in his situation, I would say “F**k it, I am not going to go through this hell if it’s just extending my life for a few months”. So, if my uncle will choose this decision, I will absolutely understand it and support him on his way.

All this is not only sad because of the progress he made, we also could find an apartment for him in our hometown, his future apartment will be in the same building where I live. It was so great that I knew, he will move next to me soon, and that the rental contract is sure. Everything looked so great, and then this. Now, as the doctors told us, we must start to realize that his future doesn’t look very promising. The doctors also told us that the prognosis shouldn’t get too much importance now, they said we should rather enjoy the here and now. While I do understand wha they mean, it’s still like a punch in the face. But yes, if that’s how it is, we want to enjoy the here and now. In Germany we often say “Die Hoffnung stirbt zuletzt” and I found a translation and it means “Hope dies last”, and as hard as the diagnosis sounds, I still hope that we can spend as much as possible time together, because if the hope would die first, I would not be sure if I would be a great help. No matter if my uncle will decide to go through the treatments or not, I will support him in any case.


14 thoughts on “This Is Something We Didn’t Want To Hear

  1. I’m so sorry to hear that your uncle’s diagnosis changed. This had to be a blow to your family. My husband got news that his tumor has grown this week. I just haven’t blogged about it because he’s not ready to share. I know we are world’s apart, but know that someone out there understands and is listening. Your family isn’t fighting alone.

    1. I am very sorry to hear that your husband has to fight one of these evil things as well. It’s sad that you had to hear the bad news that his tumor is growing. It’s so difficult for all who are involved, I wish you and your family, especially your husband much strengths to be able to go through this. You’re right, we’re not fighting alone. Thanks for the kind words, I did think a lot about it if I would want to write about it or not, but my blog or my writing style gives me and my family enough anonimity, the writing helps me to continue to support my uncle, because my blog is like an outlet that helps me to understand my thoughts, my fears, and so on… anyway, I do pretty much understand if someone doesn’t want to write about it, or if someone is not ready to write about it, I absolutely understand this. I wish you and your family and your husband greatest strength in this difficult time.

    1. Yes, this was a devastating news. With the new apartment, and the progress we saw, there was so much optimism, but this news came very unexpected. We simply didn’t understand or didn’t want to understand that this second result could change the diagnosis. 😦

  2. I went through a very similar scenario with first my mother, then my brother. It’s hard to find anything uplifting to say, so I’ll just tell you to hang on and do the best you can. Just being there is a big deal for your uncle, even if he doesn’t tell you.

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