I can just imagine what you must be going thru
I can just imagine what you're going thru and feeling! I hear that a lot from friends and even family after I tell them what I'm going thru or have gone thru. The fact is...No...no you can't! Unless you have gone thru or going thru metastatic prostate cancer, you do not have a clue. You might understand the anguish and pain, but how it affects you is another story.
It's frustrating trying to tell even a family member or health care provider what you need or how you feel. I know from my own experience how my emotions have heightened and oftentimes have difficulty expressing myself and end up all teary eyed. The pain drugs alone make me incoherent at times and am in a daze. I can't think straight.
Fortunately, I have a wonderful wife who spends a lot of time with me and sees that I'm about to have a problem, she's right there taking care of it before I have one. We've been married for 45 years so we have learned each others habits and needs. She is my right hand so to speak. We go everywhere together..well at least where I am able to go. Without her I'd be in deep trouble. There's not much I can do these days so she has to do pretty much everything. That means emergency repairs around the home, car etc.
I made a special point of bringing her in the beginning to any doctor visit or procedure I had to go thru. She can also tell the doc things I forget and pick up on things the docs tell me. Like I said my mind isn't that clear and often miss what I'm told.
Sometimes the pain gets so bad I can't concentrate on anything nor do I want to hear anything around me. Everything below my waist is swollen. I said everything. The skin on my legs are so tight that when using my leg muscles they just cramp up with no place to go. My penis and scrotum have doubled in size. Walking even as little as I can is challenging and I have to walk bow legged. Everything is so tight. I finally got some water pills to cut down on the swelling. I gained 15# of water in a few days which all went down to my lower extremities.
The other day the pain got so bad as I tried to walk from the car to my bedroom, all I could do is yell in agony and in tears. When I finally got there, I scrunched down into my bed and into a ball and just lay there for about a half hour until the pain subsided. I did get more opioid pain killers from my oncologist but don't want to use them...too easy to overdose. I'm already high on opioids, do I need to get higher or dopier than I already am? This morning my urine was all red and could see blood clots in the Foley bag and tube. When I'm stressed down there this happens more often than not. I see my urologist tomorrow. It did clear up later in the day and usually does as long as I'm sitting or laying still and drinking plenty of fluids.
The taste of food sucks as I have lost my taste buds and appetite. My wife tries to get me to eat but I can't. I live on Ensure Nutrition Shakes, which has all of the vitamins, minerals and protein I need to maintain. For now, they still have some taste for me. The idea of dying is always in my mind but dwelling on it for me is not in the cards. I try to take things in whatever manner they come and deal with each issue one at a time. My mental attitude is still good considering what I've been and going thru. It's very difficult to get thru a day but I have to take them for what they are.
I don't drive anymore. The wife does that. I just need to be a little more patient with her as she drives me nuts sometime in how she drives. Getting in and out of my truck is challenging but at least doable for now. It's a bit high for me to get in and out considering I can barely walk a few yards. A car is too low and impossible for me to get out of. Since my wife drives me everywhere in my truck, we sold the car. It was just sitting around gathering rust and being a liability, so I sold it. I saved a lot of money on insurance, gas and maintenance once I got rid of it.
Television becomes annoying and boring, I hardly ever watch it. There's just nothing worth spending my attention to the worthless shows. I go on my lap top to occupy my time creating music like the one below in the player but often just stare at the empty ceiling or walls. The nice thing about being able to create music, is the fact that it keeps my mind focused away from the pain. It's nice to have memories and experiences to occupy my time when I'm out of ideas for music. I've always said and taught others; make memories and have experiences because later in life they will be all you have left over.
Someone asked me what I missed most of all. Fishing! I've spent a lot of time driving to the north woods to go fishing. It was a yearly thing and enjoyed the north woods atmosphere. I fished locally as well and spent most of my free time fishing. I was very good at it! I don't have the sea legs to even get into a boat let alone spend 8 hours or more fishing. I do miss painting and one of these days will figure out how to get back to it. As for right now my focus has been taken over by all of the pain meds which cloud my thinking. Sometimes tho I feel pretty sharp like right now as I am writing this blog.
It's frustrating trying to tell even a family member or health care provider what you need or how you feel. I know from my own experience how my emotions have heightened and oftentimes have difficulty expressing myself and end up all teary eyed. The pain drugs alone make me incoherent at times and am in a daze. I can't think straight.
Fortunately, I have a wonderful wife who spends a lot of time with me and sees that I'm about to have a problem, she's right there taking care of it before I have one. We've been married for 45 years so we have learned each others habits and needs. She is my right hand so to speak. We go everywhere together..well at least where I am able to go. Without her I'd be in deep trouble. There's not much I can do these days so she has to do pretty much everything. That means emergency repairs around the home, car etc.
I made a special point of bringing her in the beginning to any doctor visit or procedure I had to go thru. She can also tell the doc things I forget and pick up on things the docs tell me. Like I said my mind isn't that clear and often miss what I'm told.
Sometimes the pain gets so bad I can't concentrate on anything nor do I want to hear anything around me. Everything below my waist is swollen. I said everything. The skin on my legs are so tight that when using my leg muscles they just cramp up with no place to go. My penis and scrotum have doubled in size. Walking even as little as I can is challenging and I have to walk bow legged. Everything is so tight. I finally got some water pills to cut down on the swelling. I gained 15# of water in a few days which all went down to my lower extremities.
The other day the pain got so bad as I tried to walk from the car to my bedroom, all I could do is yell in agony and in tears. When I finally got there, I scrunched down into my bed and into a ball and just lay there for about a half hour until the pain subsided. I did get more opioid pain killers from my oncologist but don't want to use them...too easy to overdose. I'm already high on opioids, do I need to get higher or dopier than I already am? This morning my urine was all red and could see blood clots in the Foley bag and tube. When I'm stressed down there this happens more often than not. I see my urologist tomorrow. It did clear up later in the day and usually does as long as I'm sitting or laying still and drinking plenty of fluids.
The taste of food sucks as I have lost my taste buds and appetite. My wife tries to get me to eat but I can't. I live on Ensure Nutrition Shakes, which has all of the vitamins, minerals and protein I need to maintain. For now, they still have some taste for me. The idea of dying is always in my mind but dwelling on it for me is not in the cards. I try to take things in whatever manner they come and deal with each issue one at a time. My mental attitude is still good considering what I've been and going thru. It's very difficult to get thru a day but I have to take them for what they are.
I don't drive anymore. The wife does that. I just need to be a little more patient with her as she drives me nuts sometime in how she drives. Getting in and out of my truck is challenging but at least doable for now. It's a bit high for me to get in and out considering I can barely walk a few yards. A car is too low and impossible for me to get out of. Since my wife drives me everywhere in my truck, we sold the car. It was just sitting around gathering rust and being a liability, so I sold it. I saved a lot of money on insurance, gas and maintenance once I got rid of it.
Television becomes annoying and boring, I hardly ever watch it. There's just nothing worth spending my attention to the worthless shows. I go on my lap top to occupy my time creating music like the one below in the player but often just stare at the empty ceiling or walls. The nice thing about being able to create music, is the fact that it keeps my mind focused away from the pain. It's nice to have memories and experiences to occupy my time when I'm out of ideas for music. I've always said and taught others; make memories and have experiences because later in life they will be all you have left over.
Someone asked me what I missed most of all. Fishing! I've spent a lot of time driving to the north woods to go fishing. It was a yearly thing and enjoyed the north woods atmosphere. I fished locally as well and spent most of my free time fishing. I was very good at it! I don't have the sea legs to even get into a boat let alone spend 8 hours or more fishing. I do miss painting and one of these days will figure out how to get back to it. As for right now my focus has been taken over by all of the pain meds which cloud my thinking. Sometimes tho I feel pretty sharp like right now as I am writing this blog.
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| me after I got out of the hospital...things have definitely taken a toll on me |
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