When it comes to living with Cancer and Pain, one tends to forget what it is like to live pain free. For example you’ve been staying home because you don’t feel good, then the day comes that you do feel good and you decide that you are going to go out. You feel, good so you keep pushing your limits by walking farther or doing more. Halfway through the day the pain sets back in or it is gradually getting more noticeable. By the end of the day you are regretting the choice you made.
Since we are talking about pain today, let’s talk about the way we remember pain or pain levels. Did you know that your brain will not remember the exact level of pain after a few days have passed? You may remember that you were in pain but the exact level of pain you were in is a questionable memory, one that even has you guessing. Now the really bad pain you might remember a lot better than the lower pain levels. The higher the pain, the brain tends to pay more attention to. You might be able to recall what brought it on or it may be a blur. It would vary from person to person and the circumstances of that moment do host a slew of possibilities as well.
There was a day that found me going to the version of an Emergency Room that Huntsman has to offer. I remember the amount of pain that I ended up in but the levels between the average everyday pain and the amount of pain I was in before the medication finally helped; well those levels are a blur. I remember that the pain was getting worse as the day (or rather the minutes) progressed. If someone was to ask me at what point did the level rise from a 6 to a 7, I wouldn’t be able to recall it. I do remember a few of the events that happened between standing at the counter of the pharmacy and sitting up in a hospital bed. I recall some of what the Doctor was saying. The pain kept my focus off of my surroundings and events, and my focus on the pain and attempting to deal with it by holding myself up with one arm and holding a pillow to my belly and chest with the other one. What made the pain worse as the day went on? I have no clue. What the Doctors finally figured out was that my body had built up a tolerance to the medication. The medication I’m on now does seem to be working. I know this because if I miss taking them even by an hour, I have to take what the Doctors call breakthrough medication just to help me cope until the Morphine does it’s job.
So how do the Caregivers, Family, and Friends deal with a Cancer Patient that has a pain level of 5 on a daily basis or higher? For starters never approach them by asking what you could do. Instead try asking them what level of pain they are in at the moment. They may be showing signs of being in pain, or they won’t show any signs at all. It would help you to get to know how they are feeling at the moment. Once you know what pain level they are in, then you’ll be able to help them deal with their day. For me, it sucks when my Wife asks if there is something she could do to help with the pain. She knows there isn’t anything she can do when the levels are normal. She also knows that if my pain levels are increasing that she may have to take me to the hospital. The reason it sucks is because all she is trying to do is help. For the most part, there is nothing she can do. She gets a disappointed look on her face when I tell her that there is nothing she can do and I hate that. Now when she approaches me by asking what level of pain I am in, then she starts asking things like “What do you want to do”. Its those moments that let me know that she understands that I am in pain yet I might be able to do things with her. It also helps me communicate better with her. That is the main goal isn’t it?
Dealing with pain on a constant level is hard to live with. Everyday is different. Somedays are really bad and I don’t want to do anything; truth be told (more to myself) those days I can’t do anything except lay around and watch TV. Reading or listening to a book, playing a game, or even going for a walk on those days is completely out of the question. On the good days I feel like I could do just about anything. I have to keep in mind that pushing my limits is a bad thing. Going for a walk takes a great deal of planning. I have to keep it under a mile (and that’s a total mileage not one way). Somedays I feel good enough to go Geocaching. Those days I have to keep it simple. Nothing higher than what a person in a wheelchair can accomplish. I start the day thinking that I can do it. I end the day wishing that I had made a different choice, because I went too far and the pain has increased.
Living with a pain level as high as 5 on a daily basis is getting to become normal. It seems that I can’t remember a day without pain. I know that I lived pain free. I’m in pain so much that it has become a normal part of life. I feel like I disappoint people on a daily basis due to my pain. I’ll try to make plans but when the pain increases I have to stay home or go home. A friend of mine came to Salt Lake City for a Family event. We made plans for one day while he was here. Halfway through that day I had to go home and cancel the rest of the plans we had made for that day. It’s stuff like that make living with pain a pain in the ass.
One of the things that has changed is how I eat. On bad days I can’t eat anything and even swallowing fluids is difficult. On good days I have to go slow and take bites so small that even a baby could eat more than me. Eating a Oreo cookie takes me more than two minutes. I have to basically put half of the cookie in my mouth and let it dissolve and then I can swallow it. Its kind of funny how I have to eat sometimes.
Well my friends its time for me to go. The pain is getting worse and I don’t want to push it. Not only that but its 2:41am. I’m sort of tired. So I hope you have a good day. I’ll write more later. I have a PET Scan on in a couple of days. I get the results next week. Hopefully all goes well. Till then, take care.