I took my trip and travel sure is fun. It is almost so fun that it seems like the daily problems are gone. They aren’t. But it can seem like it for a while.
Today, because while I slept, no one could count higher than 20, I had just begun to wake when the spasms hit. I screamed so hard and loud that I stripped my voice in less than a minute. Linda looked at me, while I begged, holding on, “MY LEG..” She got up, then looking back decided not to walk out and help massage the leg. That tipped me over into passing out and when I came to my leg hurt enough for the throbbing to bring tears to my eyes.
The pain doesn’t make it so I scream. I scream because there isn’t anything else possible. Like an long handled axe falling, the noise is pulled out of me, as fast as can be.
Of course, that happened while away too; because out of Cheryl, Linda and I, the group of us couldn’t count to three, and so more than three days went past since putting on the Fentenyl Patches. And when the pain of them ran out, that was a lot of screaming. Linda was out at the Con taking pictures and Cheryl said she watched for a time then closed the door and left me screaming and squirming.
I am not sure what it is called when people do the same actions and expect different results. But that is those ‘Patches’ and the last year. At first Linda put up a white board, ‘So it can never happen again’ ‘Cept after the first time, she forgot to put up when she had changed them, or when they were to be changed. And it was every week I was grinding my teeth in pain. Then it was a couple times a week and the pain was so much, I couldn’t grind my lips anymore, or they would crack in two.
It isn’t like I didn’t try to brainstorm. For example, Linda’s watch alarm goes off each day when the patches are to be changed, as does mine. But it is easy to learn to ignore them, to the point that often Linda doesn’t even hear hers. There was the white board. There was me trying to do it all by myself. There was me changing it to every three days instead of two, which helped for a bit But with sleep, strokes and seizures, I am never quite sure when ‘now’ is exactly, much less when patches were last put on.
I asked VIHA if they would come and do it, but no, they often get it within a day of your needs. Which is like someone telling you while parallel parking that they get within ‘five feet’ of the front or back of the space.
Linda once told me after she missed the day to change patches for four times in a row that if I wasn’t available the minute her alarm went off, or I seemed busy she would decide in her head that had chosen to skip 12 hours or a day. I don’t. I don’t think anyone sane would. But then, I rarely get the meds which are for depression, bipolar disorder and OCD. So I don’t know how often I am completely sane. When I asked why I am only getting 50% or 40% of the meds, or miss them for two days, Linda will turn away and walk out of the room, so still curious about that.
Then she told me when angry that she progressed on to where she just gets irritated or angry and then decides that unless I perform some sort of supplication, to her that is me choosing to go without pain control. That was when I tried to find a non-profit group to take over care giving. But I am under 65, so there isn’t one.
I just know that I missed the patches during the Con because I missed going because the pain built and built until I was screaming. I miss at least 3 days a week because I am screaming (which is why I tried to limit it to JUST the patches and spinal pain meds, not the extra diluid, but still 3 days a week screaming: it makes me hoarse a lot).. And so a great deal of the time, I have the shakes or am paralyzed. Like today, when I went to push the medical alert line, only to find that it was up in Duncan, Linda having driven it up there. As I was in Victoria, that was….unfortunate.
‘unfortunate’: those are the kind of words people use to tell you how you are supposed to be feeling about the cancer you have, and the treatment. But somehow ‘unfortunate’ doesn’t seem to have the oomph to explain the feeling of having doctors describe how they plan to bring you to nearly the point of death over and over again. And no, they aren’t about to go, “Gottcha!” And if you ask the percentage, you remember than they are telling you the NORTH AMERICAN chances of your survival, not how they are doing this year. So they might have killed 60% of the patients with your cancer, but tell you that you have a 70% chance of success. Try not to think about it. Another feeling you can label as ‘unfortunate.’
Linda has a lot to remember. But at some point, and in many ways, in parts of life already passed, someone will need to be able to make care decisions, not with a 40-65% of accuracy but full time. And when the person in your life says, ‘That needs to be you’ even when you are unconscious more and more, there is only one feeling: terror.
‘Please call these people’ I say to Linda, pointing to a number, ‘and if they do nothing, try them, or them’ And when I wake screaming a day and a half later I ask, with an intensity which is likely scary, ‘Why didn’t you call them?’ And the answer is a shrug or walking off: feeling of terror.
I’d love to believe that the life of pain, of suffering has a solution, or many. But right now, doing operations on myself with a mirror isn't a miracle, it means it is Tuesday....or Thursday. And most of what is left are screams and the other darkness of life which is ripped right out of me until the ‘me’ which just wants a friend is the shadow, blotted out by the minutes and days of ‘unfortunate’
15 hours ago