A Personal Journey with Cancer

Post-op has been difficult for a number of reasons but the most interesting to me has been about energy, the amount of energy I have at different times during the day. Energy is important, not only because of how I need it just to take care of myself, surprisingly it has been how little I have paid attention to it in my life before this operation. Sometimes , particularly in the morning, I feel very energetic, almost normal, and then I have to use that energy to start dealing with the pain of the catheter and the soreness in my abdomen.

 

I feel at times like I have lost a bar fight to a group of bikers.

 

My abdomen is very sore because inside many sutures are healing, membranes have been stretched in order to meet and fill in spaces, or often the spaces are healing, and that’s why I can’t sit down for too long, can’t bend over very much, I can’t lift anything more than 5-10 lbs. at most. And then there’s the catheter, the constant source of irritation, distraction, and sometimes great pain. And so my energy, when I have it most, is often used up very quickly. I find myself surprisingly, during a time in the morning when I am often my most productive, feeling like I need to just get in bed, and that’s unusual for me and at first I’ve resisted this.

 

While the painkillers are good for taking away this distraction of the pain, they also distract my mind and make me fuzzy-headed and it’s hard to concentrate on what I’m doing. I’m already of an age when I find myself at times walking into a room and wondering why I came in here, I know there was something, I just can’t remember what it was. The other thing is that sometimes I’ll be at a task and find myself distracted by something very easily, and normally I would not be, . So I’m having to learn to live during my day according to these varied energy cycles and the impact of the pain killers As I’ve been reducing the pain killers I’m able to concentrate better, I’m able to get things done better, but the energy that’s drawn in the physical distractions continues.

 

The pain, by and large, has been what I expected it to be with a couple of exceptions and those are primarily around the catheter.

 

It’s an intimate torture.

 

And one that I’ve expected but not adequately prepared for, and I don’t know that I could have. I’ve read a lot of the reports from other people who have told their post-op stories and it seems different people have different relationships with their catheter, so to speak. Some people aren’t as bothered by it as others. On that scale I would place myself as someone who is very bothered by it. And yet I’ve learned to take care of it, switch from the light bag to the overnight bag and all of that sort of catheter technology I’ve got down very well and that to some extent is sort of reassuring I suppose, I can handle this. But the sense of invasion in my body is compounding that vulnerability and the sense of otherness that has already been created by the presence of the cancer. As I wait for the catheter to be removed I’m aware that the prostate is gone and hopefully all of the cancer as well but I won’t know until I get the pathology report, hopefully at the same time that the catheter comes out.

 

The impact of the catheter on those around me has been varied. My eleven year old son took one look at it and said, “gross,” turned and walked away and hasn’t had anything to do with it since. My six year old son is fascinated by it? How far up does it go? Does it hurt? Does it move around? Does it hurt when it moves around? How come you have to clean the ends when you change bags? And how come you have the little bag and the big bag and how come the big bag has a long tube and the little bag has a short tube and how come you wear the little bag on one leg some days and on the other leg other days? All sorts of questions that are natural to a six year old’s fascination with things that are different and curious.

 

I have had to go back into my closet and get out what I think of as my fat clothes from several years ago when I weighed a lot more than I do now. From those times I saved some pants that are now very useful because they are large enough so that the leg bag is generally unobservable when I’m wearing the bag and they’re just more comfortable with that contraption attached to me.

 

So save your fat pants you may need them someday.

 

But I don’t like how I look in them, so my vanity is being challenged once again by this whole thing (!) But most people don’t know that I’m wearing a leg bag, I haven’t had any unfortunate accidents with it and it provides me mobility that is important especially this time of year. In the winter I get cabin fever and need to get out from time to time. I’m not supposed to be driving but as long as I’m not taking my pain medication I do drive short little distances to the grocery store, to my favorite coffee shop here in town, 5, 10 minute drives, and then go home.

 

Beyond that the post-operative period is one whose uncertainty is different than the uncertainty that I experienced when I still had the prostate. The prostate’s gone, hopefully the cancer is too, and so the uncertainty isn’t about will the cancer metastasize from the prostate someplace else but has it already? Did they get it too late? What are they going to find in the pathology report coming up and the blood tests? My attention is shifting in the medical realm to new areas of information that I’m somewhat familiar with but am paying more attention to now. I encourage anybody who’s in this sort of netherworld between having the piece of your body removed that is supposed to have contained all the cancer and the point when you learn if that was successful, to engage in some more fact-finding. At this point, for me, I have found that much more comforting than reading more stories about people’s post-op experiences. To the extent that different cancers are treated differently, surgically or by radiation or chemo, in that those different methods removed different parts of your body that are supposed to contain the cancer, everybody’s turn in fact-finding will be different but the American Cancer Society is always a good place to look in addition to those specific sites concerning the different kinds of cancer that people may be facing.

 

And for those who don’t have the cancer themselves but are affected by someone who does, I think that some kind of learning can be helpful and that knowing what other people go through in the post-operative experience can be helpful in supporting the cancer survivor in learning to live differently. I think that the stories that I’m not reading about others’ journeys are more helpful to Todd right now than they are to me and he has said as much to me and I hope that he will write more about that in his next entry to the blog. My next entry will be after the catheter is removed and once the pathology report is back.

 

Please as always feel free to comment, challenge, question, and offer other resources in your own stories.

 

-- Steve

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