January 1, 2021 -- Medical update

For the past half year, I've been dealing with bladder cancer. A tumor was removed last summer, and biopsy showed it to be an aggressive form, so treatment would also be aggressive. A medport was surgically installed through which I received two months of chemotherapy. A few weeks after completing chemo, my bladder, uterus and multiple lymph nodes were removed. The day after this surgery, a stent shifted and punctured a ureter, requiring emergency surgery.

After some days in the hospital, I was released home, but just a couple days later, I fell painfully ill with bloat (bowels pushed out of place, strangled) and had emergency surgery. More days in the hospital followed, requiring complex care. It was a challenging time mentally. A "feeding tube" through my nose suctioned bile from my stomach until my bowels could again function. I was supported by i.v. fluids, allowed no food and limited ice chips for days and nights on end.

The prior surgeries had given me 10 incisions. The bowel surgery added a line of staples very much like the zipper on your jeans for length and location. My abdomen also has a portal around which an appliance acts as my bladder, and this is connected to a larger bag that collects urine in volume so I can sleep at length, and my dear husband can drain away the fluid.

I was released Saturday, Dec. 26, and am grateful to be home with Dan, who has been attentive 24/7. I will have visiting nurses for some months. A string of med appointments lie in my future, including an assessment with my oncologist. Hoping to hear all good news.

Now that I'm some days away from anesthesia and the disruptive hospital routine, I'm sleeping better. I'm limited to lying on my back in the recliner or bed. With the help of Tylenol and a hand against my belly, I can push a wheeled office chair back and forth for exercise, which is preferable to using a walker. My prescribed "low residue" diet is weird -- processed white breads, pasta, rice, potato; low-fiber fruits with no skins; few veggies. I'm grateful to eat food of any kind.

Witnessing my parents' decades of crippled living, Dan and I designed/built my bathroom for handicap use, architecturally clever for hiding supports everywhere. My toilet is ADA height and adjacent to the sink, which has a handheld bidet attachment for abundant, warm water douching. I have a bench seat for our generous walk-through shower. However, I haven't "ramped up" the mindset or energy to solo shower yet. I got an assisted shower in the hospital a week ago, but I'm freaked out by the state of my body's wounds and put off by mild pain. Not having any hair, I'm not motivated to shampoo. One of these days, after a good nap, I'm going to push through emotionally and shower.

Each day, the swelling seems to go down a little, and I want to believe, however slowly, my abdomen and bowels will eventually get close to feeling normal again. I aspire to sleep on my side, to walk unassisted.

Obviously, I originally expected to be better off today, Jan. 1, 2021, than I am. I expected to be wearing perfume again. But I accept where I am. I've experienced a crazy range of perspectives during these trying months, but "patience" seems to be lesson #1 every day.
 

Blog Comments

jujy54

queen of the universe
Basenotes Plus
Jun 8, 2008
Oh, dear! I had been off of basenotes for a while, and only vaguely knew you had a health issue. Wishing you recovery and comfortableness, dear Q. Sending love and gentle hugs
 

kbe

Basenotes Plus
Basenotes Plus
Nov 12, 2006
Joy my best to you. It took a while for me to regain a semblance of normalcy after my chemo and cystoprastatectomy and to fully accept the ileal conduit but...it does get much better, that I can assure you., My first solid hospital food on day 6 after surgery was a terribly made grilled cheese sandwich...although I could only finish half it was divine!! :thumbup:
 

Redneck Perfumisto

League of Cycloöctadiene Isomer Aestheticists
Basenotes Plus
Feb 27, 2008
Many hugs, Quarry. I didn't see this post until just now. Your strength through this is inspirational. Thank you for having the courage to share this with us. I will treasure your posts even more.
 

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