In my last post I wrote about the effects of enzalutamide on my quality of life. My muscles continue to go rigid when I do not move, so that I wake up with nasty aches.
One issue is that of the toilet. When sitting down (which I do a lot because of being 100% urinary incontinent following an RP), I get about half way and my quads and knees give out, causing me to collapse the remainder of the way.
I spoke with J. about this, expressing my fear that I will one day collapse on to the loo and it will crack beneath me. She has now, during today's midday nap, ordered a raised toilet seat, some 15 cm higher. She took a pile of books while I was sleeping and propped them on the thunder box, then clambered aboard to make sure that it would not for her be like scaling Plum Lumon.
She tells me that it will be very comfortable for her, though she did not mention what issue of hers it might help alleviate. Such words brook no argument. So . . . the toilet seat comment and my sense of aging quickly continues. I hope I get used to it soon and that I settle down into a new sense of normal.
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BrentW
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We put in a slightly higher toilet and added a bidet which raised it a little more and really helps to clean up... My walker also fits right over the loo to help me up and down when needed, Right now it's in the closet and not needed.... Maybe again later ??
On our recent road trip we traveled with a hard plastic toilet riser with handles that (luckily) locked onto every toilet at the places we stayed along the way. We also brought a bed rail and suction bars for the showers, lots of diapers and pads. I had quite a workout getting each place set up for Grumpy but it made him less grumpy.
He really missed the add on bidet at home, though.
I walk 7000 steps (minimum) per day, with 4000 before breakfast. This includes a 30-minute exercise session, often with weights, run by Goldster.co.uk. So, I do not feel that lack of exercise, or type of exercise, is an issue. All muscle and joint issues came withing 2 weeks of my starting on enzalutamide.
Regarding the incontinence, I have no choice but to live with it. My PCa was initially treated with brachytherapy in 2004. When it became apparent that that had failed, and that the drug I was on at the time (Androcur) was also beginning to fail, I was given a battery of scans that found . . . . nothing, even though my PSA was rising. So, it was recommended in 2010 that I have an LRP. The double trauma has left me 100% urinary incontinent.
The only times urine collects is when I am sleeping, or when I am seated for a prolonged time. After sleeping, I clutch myself to get to the toilet, doing all I can to avoid major leakage along the way. It is demeaning, but better than being in a wooden box, no?
Sometimes, concerned-wife, I find myself having to trust my care-giver/oncologist. She can see and hear how I am, and we shall take the discussion from there. But thanks for the reminder.
I'm not incontinent but I have to pee every 1 to 1.5 hours overnight so I keep a big jar (with a lid) by the side of the bed so I can just stand up and go without struggling to get to the loo.
Enzalutamide is tough, I feel for you. I would focus on squats regardless. No weight, high reps, working up to 50-100 at a time. You can place eggs all over that toilet seat and repeatedly squat to contact without breaking them for practice. Good times!
I have a AUS. Is this not an option for you? Game changer.
im not saying this to 'minimize' effects of our treatments on the body.
My experience of enzalutamide that cant be forgotten for me was the 'FEAR'.....
Hard to explain, but small, silly situations were magnified and had real tangible FEAR!!!
JUST!!!!Walking(well walky shuffling at times...)
The ocologist and the chemist say enzalutamide crosses blood brain barrier???chemist said can get in to a persons head....
Im not saying this for you stop enzalutamide, or question its effectiveness or down play your health worries.
Just to be aware of the mental side effects? Read the pamflet with the xandi tablets
A little over share for you. Early days when I was peeing blood n gore, whenever I was out n about away from my toilet at home, it was easier to pee in the sink(hand basin), ive not tried pooing in there yet, but I keep my options open......
Hope things go as well as they can do for you today dude.
Brent my recommendation is do squats twice a day, don't need to go down all the way, just exercise the mobility you have with as many repetitions as you can , 10, 20 whatever as far down as you can go without collapsing, that will give you back some of the lost mobility , gradually, th e raised toilet is a great stop gap ( 😀) measure.
possibly a lower dose? Standard dose is 160 mg per day. I was on low dose bicalutemide but found side effects very difficult. Changed to low dose (40 mg day)Enzalutemide eight weeks ago. Side effects more tolerable and psa dropped from 1.01 to .57.
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