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Another fight ahead - this time it's for the title!
My dear Apolyton internet friends,
topic might be uplifting but ... it's my old nemesis who is back again. For those who have missed, I was diagnosed with brain cancer back in 2010. It was not the worst kind, and had relatively low gradus, and it was caught fairly early and it was positioned in a favourable place inside my nutty head.
The problem is, it's not only back, it's twice the size it originally was. I can't express the horror I'm dealing with. It is like that scene from the shining, where all that blood is coming from the elevators and behind the walls and that kid is scared with his mouth open. That, but slowly burning, like an African bush war. Just sucks all my energy with its horror. Daily. I have to look into the eyes of my little kids, aged 1 and 3, who don't have a clue of what's going on, playing and smiling and laughing, screaming daddy daddy with such joy... ****ing breaks my heart. I will have to talk to them about it... that daddy will be leaving some day and won't come back. How the hell do I explain that, or talk about that? I feel it's important though. And I have to... I can't just keep hiding it. 3 years and still running, I'm a mess inside. Scarred, irreversible damage to my emotional well being. My goal is to not die too early. I think it's wrong that my kids will become fatherless. It pains me to no end. It burns my heart to think how they try to understand it all, how they won't, and how their life will be affected by this fact.
Of course I will do my best to remedy this, so that the impact will be minimal, so that we will do as much as possible now. But needless to say it is not an easy thing to do.
One of the difficult things to deal with is the medical staff - undeniably excellent experts - who have not disclosed important information with me. First, as I went to hear the bad news, we spent 5 minutes debating whether it's brain cancer. My doctor argued that it really isn't, because there is no such thing. If a benign tumor kills you, or if you live longer with a malignant tumor, then what is brain cancer anyway. POINT TAKEN, but it frustrated me that we spent a long time redefining things, arguing about semantics. It's all about making me feel better, and not thinkign I have this thing called brain cancer. But I do have it! I know I have it and redefining things won't make a difference... it does, however, break our trusting relationship. Other examples soon followed: I found out that it had been progressing all this time. Albeit slowly, but it had been progressing. I thought I was cancer free. The way they said it was that there are no significant changes. Meaning no significant changes to the situation earlier, when they compare images. The science behind it is that you look two images next to each other. Are they significantly different? If not, then no significant changes. However, the tolerance for them was few millimeters. So, now my tumor is 5 cm long, since every iteration of images did not seem to bring _significant_ changes, but of course accumulated to the current situation: twice the size and considerable enough to have to bring it to me and think about radiation therapy or probably try some other drugs first.
****ing science? Seriously, is this the level we're at? And the communication? I can handle facts, in fact I want them and I'm entitled to know. I would not have taken a mortgage knowing that my tumor was progressing, I thought I was cancer free the whole time. ****. I wanted to take the whole room down, and everyone in it (with fists I remind you), they were not telling me the truth. All this time they knew it was progressing, yet they didn't tell me! What *******s!
So now what? I don't know. I took the rest of the week off from work. I'm thinking of a new game plan. I'm trying to come up with a strategy, a battle plan. I can't trust those *******s anymore. They were clear about being eager to fry my brain with radiation therapy. They even said how well a patient can take it, it's just the brains that can't take it. I mean... if the brains can't take it... then how can the patient take it? I don't get it. Just like I don't get the state of the art "these images look pretty much same to me!" and yet it's now 5 cm long. How did it take us by surprise? It accumulated to that, it's not a sneak attack. Seems to me what they're interested is balancing out the care of me to their budget. That is , they truly want the best for me, but they have like a hammer, and another hammer that is shaped differently, when you're supposed to have a tool kit to choose from or just try out.
Just rambling, but I'm pretty desperate. It's war.
topic might be uplifting but ... it's my old nemesis who is back again. For those who have missed, I was diagnosed with brain cancer back in 2010. It was not the worst kind, and had relatively low gradus, and it was caught fairly early and it was positioned in a favourable place inside my nutty head.
The problem is, it's not only back, it's twice the size it originally was. I can't express the horror I'm dealing with. It is like that scene from the shining, where all that blood is coming from the elevators and behind the walls and that kid is scared with his mouth open. That, but slowly burning, like an African bush war. Just sucks all my energy with its horror. Daily. I have to look into the eyes of my little kids, aged 1 and 3, who don't have a clue of what's going on, playing and smiling and laughing, screaming daddy daddy with such joy... ****ing breaks my heart. I will have to talk to them about it... that daddy will be leaving some day and won't come back. How the hell do I explain that, or talk about that? I feel it's important though. And I have to... I can't just keep hiding it. 3 years and still running, I'm a mess inside. Scarred, irreversible damage to my emotional well being. My goal is to not die too early. I think it's wrong that my kids will become fatherless. It pains me to no end. It burns my heart to think how they try to understand it all, how they won't, and how their life will be affected by this fact.
Of course I will do my best to remedy this, so that the impact will be minimal, so that we will do as much as possible now. But needless to say it is not an easy thing to do.
One of the difficult things to deal with is the medical staff - undeniably excellent experts - who have not disclosed important information with me. First, as I went to hear the bad news, we spent 5 minutes debating whether it's brain cancer. My doctor argued that it really isn't, because there is no such thing. If a benign tumor kills you, or if you live longer with a malignant tumor, then what is brain cancer anyway. POINT TAKEN, but it frustrated me that we spent a long time redefining things, arguing about semantics. It's all about making me feel better, and not thinkign I have this thing called brain cancer. But I do have it! I know I have it and redefining things won't make a difference... it does, however, break our trusting relationship. Other examples soon followed: I found out that it had been progressing all this time. Albeit slowly, but it had been progressing. I thought I was cancer free. The way they said it was that there are no significant changes. Meaning no significant changes to the situation earlier, when they compare images. The science behind it is that you look two images next to each other. Are they significantly different? If not, then no significant changes. However, the tolerance for them was few millimeters. So, now my tumor is 5 cm long, since every iteration of images did not seem to bring _significant_ changes, but of course accumulated to the current situation: twice the size and considerable enough to have to bring it to me and think about radiation therapy or probably try some other drugs first.
****ing science? Seriously, is this the level we're at? And the communication? I can handle facts, in fact I want them and I'm entitled to know. I would not have taken a mortgage knowing that my tumor was progressing, I thought I was cancer free the whole time. ****. I wanted to take the whole room down, and everyone in it (with fists I remind you), they were not telling me the truth. All this time they knew it was progressing, yet they didn't tell me! What *******s!
So now what? I don't know. I took the rest of the week off from work. I'm thinking of a new game plan. I'm trying to come up with a strategy, a battle plan. I can't trust those *******s anymore. They were clear about being eager to fry my brain with radiation therapy. They even said how well a patient can take it, it's just the brains that can't take it. I mean... if the brains can't take it... then how can the patient take it? I don't get it. Just like I don't get the state of the art "these images look pretty much same to me!" and yet it's now 5 cm long. How did it take us by surprise? It accumulated to that, it's not a sneak attack. Seems to me what they're interested is balancing out the care of me to their budget. That is , they truly want the best for me, but they have like a hammer, and another hammer that is shaped differently, when you're supposed to have a tool kit to choose from or just try out.
Just rambling, but I'm pretty desperate. It's war.
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