It’s a long time ago since I participated in any of the WordPress daily prompts, but the recent prompt is about hope, and if there is a word that described our recent weeks and months and this day well, it’s the word hope. As I mentioned already once, my uncle got the diagnosis brain tumor, and until recently it was not clear what kind of tumor it would be. He had a brain surgery where they tried to remove most of it, and the laboratory in another hospital got the samples and we were now waiting for the results, to hear what kind of tumor it is. Meanwhile he recovered a bit from the surgery, and we were happy to see his progress to get back on track. Yesterday we had this appointment in the hospital again where they wanted to talk with us about the results from the lab, and it was a difficult appointment for us all.
My uncle’s worst enemy has a name now, they told us about the lab results, his brain tumor is called Oligoastrocytoma, and they said they could remove a lot of it, but even in his case it was not possible to remove all of it, but the doctor promised that they created perfect conditions for the aftercare. His Oligoastrocytoma was classified as WHO Grade III. The good news was that it was coming from the brain cells, it didn’t spread from another type of cancer in the body, it’s from the brain and they don’t have to take a look if there is cancer somewhere else in his body. The Oligoastrocytoma belongs to the group of brain tumors called “gliomas”, Gliomas are from the glial, or supportive, cells of the brain. The Oligoastrocytoma is a mixed glioma and contains both, abnormal Oligodendroglioma and Astrocytoma cells. We knew already that his tumor was growing diffuse, and even if they said the removed the tumor completely with the surgery, I expected that the word “completely” would have a completely different definition in a medical sense, that’s what I expected after reading about diffuse growing brain tumors, and when one of the surgeons told us before his surgery that they would try to remove the core, and if something is leftover, they would fight those remaining cells with other options.
As I understood it, paint a tennis ball on a paper, this object doesn’t look diffuse and the round object would be easy to cut out without damaging the surrounding paper, but a diffuse growing tumor is not just round and grows in all kind directions and I think tree branches would be a very great example of a diffuse growing object. So, like a tree, diffuse growing tumors have a lot of small branches that go in different direction, they say it’s growing invasively into the healthy cells in the brain. That means in easy terms, it would be easier to cut out a painted tennis ball from a paper than cutting out a painted tree, because in the brain you don’t want to destroy the healthy surroundings. We got told, they removed as much as possible without destroying healthy tissue. Now we know, the remaining cells must be killed with other options, for now it is planned to start the aftercare, they want to destroy the evil smaller branches with radiotherapy. Some of us expected something like this, he will now get 30 appointments for radiotherapy to kill the remaining evil cells. It starts in two weeks, and they said they might call us by phone if it’s chemotherapy instead, because they still test samples in the lab, and if they can kill the samples better with the chemotherapy, the plan might change, but for now we know it’ll be radiotherapy.
Fortunately it’s not a Grade IV tumor, but a Grade III tumor is not the best news either. Grade I and Grade II is not maligne, although the whole subject has that much complexity that even those tumors could make trouble. Grade III and Grade IV are maligne. What does maligne even mean? In the case of a Grade III tumor, it is actively reproducing abnormal cells that grow in nearby tissue, it doesn’t happen slowly, in the case of a Grade IV tumor it happens just even more rapidly. However, the doctors were honest with us, and you can read it in the web anyway, Grade III tumors don’t grow that slow either, and can reappear, in the worst case even as Grade IV tumors, it doesn’t have to happen, but we got told it can happen. Of course, we got told about the complexity, and that it always depends, every case is individual, but we understood that we don’t talked with the doctor about the flu. So, yeah, it was quite difficult to sit there and to hear all this, even if we knew about his tumor already since some time now, but the more information’s you get, the more it gets real also for you as a family member. We suggested my uncle to write down questions for the appointment, and he asked all those questions, and we have been there to ask questions too. I liked it when we all got the business card of this surgeon, because he told us that most people will get new questions after a while, and we could then call him by phone directly.
Before we ended the meeting, there was of course the most obvious question, my uncle asked if the doctor could tell him a prognosis. The doctor was very honest, he said “You know, the problem is, we never can tell for sure, every individual case is different, but if you want to hear something good, there are people who are still living 10 or 15 years later after the same diagnosis”. He continued and told us that my uncles conditions are great, there are several good factors that result in perfect conditions for the aftercare, but he was honest and said that it’s always difficult to mention a prognosis due to the risk that it could re-occur at any time, and as it’s different in individual cases and that we shouldn’t underestimate it either. However, he said that the radiotherapy will be done to kill the other remaining cells, and to prevent or delay the recurrence of another tumor. In the worst case, we got told, that another surgery might be needed, and that a new therapy would have to start. So, yeah, there is of course no real prognosis and I understand that, but we all hope for the best outcome after the radiotherapy and that it doesn’t re-occur soon again, and that the radiotherapy will have the greatest effect.
For some reason the appointment hit me harder than my uncle, because in the car he smiled and said “You know what? I feel like I have a time bomb in my head, but I only want to think positive, I will let them do everything now to defuse the remaining explosives”. He seemed so relaxed after the shock, and how he said this, it was almost funny if it wouldn’t be that serious, and I played that game too and did bolster him up, but in my inner I was so afraid and though “Please, I hope that everything will work out well for him”. Anyway, as I have read a lot about psychology, and as I have talked with a psycho oncologist, I know we shouldn’t give the disease more room than needed, we should get a bit of normality, unless my uncle really wants to speak about it, but apart from that I simply want that he feels normality. I won’t start to talk about it unless he wants to talk about it, I will listen. Well, we knew since some time that the appointment was not about something like a flu, but something more serious, we knew we would talk about a tumor, it’s just that with each new information, it felt more and more real, and maybe we do just start to understand now what happened. I phoned with my mother, and we both still believe that we won’t be a great help if we get into melancholy, and she said that he will be strong and that she hopes that we can spend many more years together with my uncle, and I agreed and said “Yes, true, now we should look forward and hope for the best outcome”.
What is hope for me? I never thought about this a lot, maybe because I never had a lot of demands, except that I wanted that my friends and my family stay healthy, but they have been so far until recently when my uncle got this diagnosis. Yes, I never hoped a lot, because if I had any demands, for example demands of material nature, I would make a plan to fullfil my wishes, I don’t have to hope for it, same goes for any other wishes. Often you can change things in your life or work toward you wishes to make certain things happen, for many things you simply don’t have to hope for. But there is something in our life we have less control about, well, maybe we have a little bit control over it, but even if we do, there is no guarantee that we or our loved ones will stay healthy. With that said, to me, hope is a wish and a strong will to make something good happen even if I don’t have control about it. I hope my uncle gets back on the track, I hope we will be able to spend many more years together, I hope he will defeat these evil cells in his body. I was happy when I saw his progress after the surgery, but since this battle might not be over yet, I hope for the best outcome after the radiotherapy. We all will stay positive, this is what will help him the most. We support him in any case, we don’t only hope for him, we believe in him, we want him to get back on track. This is what we hope for, this is what hope means to me now.