Cancer and Dignity

This part is difficult to talk about, but I did promise honesty.  If you want to leave yourself with a more dignified or romantic idea of me in your mind, you probably don't want to read this bit.


 I have come very suddenly to a condition that is not only painful, but excruciatingly humiliating - of the two, the humiliating lack of dignity and privacy is much more difficult for me to deal with than the pain.  The people here are lovely and kind, but that gives me no relief, no privacy, no dignity.  To know that things are only going to get worse instead of better is horrible.  

They don't talk about this sort of thing in movies.  They don't warn you about this sort of thing in the doctors' offices, either.  You expect pain, you sort of know that you are going to end up wearing adult diapers - you know you are  going to end up being wiped up a bit on occasion, that you might end up wetting your bed.  I cried the first time I stood in the middle of the kitchen, unable to stop the little flood of fluid that poured and spread across the floor.  

Cancer does not care about your dignity.  

When you have cancer, you end up having to take all sorts of medications, many of which are constipating.  So you have to take laxatives and/or stimulants to make sure that you have at least one bowel movement a day, or things get very uncomfortable very quickly.  Keeping track of that sort of thing is a pain, but it's better than the alternative...

When you have the kind of cancer that causes paralyzation and numbness, things get worse.  You can't feel what is happening, and you don't have the muscle power to get what is down there out on your own.  You have to take medicines that soften things as much as possible - both oral meds and the sort that require other people to physically interfere.  And then when you sit on the commode, people have to physically interfere again.

There are all sorts of concerns in this situation.  First of all, of course this is a very intimate and humiliating sort of process.  And you don't get a choice about who performs this service for you - you take who you can get, which for a woman means that sometimes this involves strange men. It is difficult to be brought to a state of infantile dependence on other people for such an intimate process.

Cancer does not care about your privacy.

In order to use the commode, especially if you are paralyzed and cannot get to it on your own, you have to be hoisted by a lift, which has to be managed by at least two people.  The process is physically painful, as they end up having to use slings and straps to lift you up and set you down, which presses your limbs all together tightly as you are hoisted through the air, and your clothes get bunched up under you and have to be pulled out from around you in order to get them out of the way when you are on the pot.  This pulling about is painful and humiliating in and of itself, but not as bad as the next part, which requires these relative strangers to physically assist in either insertion or abstraction of material - and yes, finally I have reached the point of Too Much Information and I will pull a merciful curtain on that particular issue, relying on your imagination to fill in the details.  

But the fact is that at that point you often end up having to wait for minutes or many hours for meds to do their job.  There's no nice schedule to let you know when urgency is going to hit.  So first of all, you are dependent on your helpers to show up with a lift, which then takes time and a lot of fussing around to get you up and on to the commode, and it might be too late to prevent a mess by that time.  And then the process itself, and the cleaning up, might take a great deal of time, might need to be repeated a short time later, etc.  Which means that all visitors need to be shoo'd out of the room, and of course they know what is going on, and it's very inconvenient for them and for you.  Not to mention humiliating and painful.  

Cancer does not care about your pain.


Thandi said...

Thank you for opening up this part of the journey to the uninformed. I am INTENSELY private, I can't even be naked around women-including my own mother.I hated it when my first born's (male)pediatrician was there for his birth. For women (and men)to have to go through this indignity is just one more thing wrong about cancer. Thank you for giving me something else to think about. I wish no-one had to go through this :-(

Delighted Hands said...

You did promise to to talk about all of this........the loss of privacy is painful. I am sorry you have to know this!