This is graphic. Read it at your own risk. There is totally too much information. But, how else am I supposed to share this experience with you? If I sugar coat things you will not have a true sense of this experience. I presume that since you are reading this and following along this is what you expect. Besides, if you know me then, you know I don’t really keep too much hidden. Ah, well. Here we go!
This morning I thought it was Tuesday. It wasn’t until I opened the door and it was a friend and not my son waiting to drive me that I realized today was Wednesday. It is Wednesday isn’t it?
My chemo morning ritual is to get up incredibly slowly. Slowly, because I feel like I just fell asleep two hours ago and I am so friggin’ tired. Yes, really. A couple of hours ago. I wake up every two hours more or less. I need to pee or turn over or fidget or I had a dream that I need to wake from to be sure it was just a dream and there really is not a scary person or ghost thingee hovering above me. Yeesh! And hot flashes. Holy SHIT! Being menopausal I know about HOT flashes. My best description has been that I have an internal thermostat set at volcanic with the occasional flare to sunspot. Well, with chemo I go from volcanic to sunspot in an instant and back again. And again. Like a wave hitting the wall of a bathtub only to return to the other side and immediately sweep across the surface of that small expanse of water. Waves of reaped heat. I sweat at night. I uncover myself. Until, I get cool enough I can start pulling a sheet back over, at least, my legs. Then, my torso. Then, uncover my torso. Uncover my legs. Cover them all back up. Add my (empty) duvet cover over me and maybe a lightweight blanket. Only to sleep for a little bit and have a hot flash or dream or need to pee that I need to uncover again. Layer by layer.
I haven’t written for a few days. I keep tossing around in my head, “Just how much should I share?” I am known to over share (WAY over share) in my real life. Usually, I do so without hesitation of any kind. It is only later that I re-run a conversation in my head that I have the time or take the time to consider what it was that I said and who I said it to. Not to mention if it was in an appropriate location. By then, it is too late. Or I just shrug and move on.
So, why am I hesitating to share some of the uglier parts of this journey here on my own blog? Because, it is, in fact, a truly ugly part of this journey. I remember when I started learning about the process of treatments that my Radiation Oncologist pointed out I would be in pain and at some point it would “burn to pee”. Now, that sounds bad. But, it does not sound as bad as it feels. A the time I could only imagine the worst burning urination I ever experienced. That was temporary and as I recall resulting from a yeast infection. Which was quickly resolved. For a couple of days that was bad. But, not so bad that I couldn’t endure it for a day or two until, the medication kicked in.
Nope. Not just a pee or maybe two. Get ready.
This is fair WARNING! OVER SHARING TO FOLLOW. WARNING! OVER SHARING TO FOLLOW.
Burning from radiation therapy is more like every time I pee. It has been getting worse over that last two, moving into, three weeks. And I am not done yet. It is getting worse as the radiation progresses. I can only keep in mind that the radiation ends on the thirteenth. Unfortunately, the effects of the radiation continue on for a time beyond the end of the radiation. This is because, as my Radiation Oncologist reminds me, “the effects are cumulative.” It will be some time before I start to heal from all the damage done by the radiation therapy.
The concept that something so painful is, in fact, considered therapy. It is weird to consider radiation and the resulting pain as therapy instead of just slow, ongoing, increasing, torture. But, it is. Both. Therapy and torture. And I have no choice. I have to pee. I am under strict instructions to drink lots of water (or other healthy fluids. Fortunately, milk counts!) I already drink a lot of water and milk every day. Now, I drink a bit more. This means I have to go about every thirty to forty-five minutes. I admit trying to hold it because, I do not want to hurt. Except I have no choice. I push. Hard. So hard I worry that I will cause myself a stroke.
Even showering hurts. Anything touching me there hurts. I don’t have a choice. This is not even the worst of this pain. Thank god I have the timing down on the medication that stops the intestinal cramping. I only defecate about three times a day now. This is much better than every time I sit on the toilet to pee. Radiation also causes the bladder to spasm as much as the intestines.
Every part of skin on my bottom is inflamed. Front to back. Mind you “inflamed’ is the nice way of saying raw. Totally, and completely raw. When raw skin is touched it breaks open. Every time the skin breaks open it bleeds a little. When raw skin is stressed or stretched it bleeds. The bleeding is merely a side-effect of the natural stretching and movement of that skin when one urinates or defecates. It hurts.
I use a 5% lidocaine solution mixed with an approved lotion to put on my bottom as a salve after each visit to the bathroom. Lidocaine does help. If only temporarily.
I finally got the portable bidets I ordered online over a week ago. YAHOO!!!!! Yesterday my son (THANK GOD) installed one into my downstairs and the other into my upstairs bathrooms. Now, I do not have to use drying, pulling, tearing toilet paper or even baby wipes. This is a HUGE relief. As any mother of an infant who has had a diaper rash knows; Gentle as a baby wipe is it is still very rough on tender, raw, thin skin.
The bidet install was kind of funny. When I asked my son how it was going (I tried very hard not to hoover, as I am prone to do) he said he was “washing the wall.” I didn’t understand what he meant until, I stood next to the toilet and tested the bidet stream and watched it arc up out of the toilet and across the small area between the toilet and the opposing wall. Clearly, I had to wash the wall at least once myself.
I had to learn how to use the Bidet. I have to be very careful NOT to turn the setting on so strong that it could even clear the lid. Even the water hurts. But, it hurts less and less long than the toilet paper or baby wipe. It is an improvement. Really, a HUGE–FUCKING IMPROVEMENT!!!!! I hoped this would help. I did not know for sure a bidet would help. All I had was hope. I am rewarded.
This is one improvement I wish I had known about portable bidets right from the start. I imagine had I known this earlier and begun using them earlier my bottom might not be quite so sore and raw.
I have told my Radiation Oncologist and the R.N.’s. The downside of these items is that you cannot just pass them on once one person is done using it. I suppose it is possible. They are cleanable. They HAVE to be cleanable. In fact, the model I purchased has a “self-cleaning” feature. But, the nature of bidet make it a less than desirable shareable item. I imagine it will be impossible for some people to purchase. For me I am thankfully able to move money around a little bit to make these purchases possible. Others may not be so lucky. The model, BB-3000W, I purchased was about $64.00 apiece.
There were models slightly less expensive. I liked the options and price on this particular model. In case you are interested this is the website I purchased from: http://www.homedepot.com/p/Non-Electric-Hot-and-Cold-Water-Attachable-Bidet-System-in-White-BB-3000W/203832286?keyword=BB+3000W#.UfrsQ2R4ZN0
Portable Bidets are apparently not kept in stock anywhere. I called many stores across the city. Every place I called from Home Depot (available online only), to the large plumbing suppliers kept any portable bidet in stock. There are entire bidet toilets available. But, at several THOUSAND dollars each they were WAY out of my price range. The expensive all-in-one bidet/toilet cost a fortune. But, so would the hiring of a plumber to install them. So, portable bidets are working for me!
Now that you have more information than you wanted I hope you continue to read my blog.