Not easy!
Recovering from the May 24 escape from Cancerstan has not been easy and communications from my end difficult…in fact this is written under the cover of some painkillers.
So yes, this is the first message in about three weeks. Most of our time has been spent in drug assisted R & R at the Wish spa in the village of Portland. Been spending lots of time counting the time to the next drug hit along with recording each output of liquid and near liquid from this wounded body. Several times, I have left the spa to see local doctors along with one short trip to attend a presentation on Nicaragua.
In case you are interested, in the paragraphs below, mostly in chronological order, are some of the details of the recovery thus far.
Sleep has been the big happening these past many days. I remember little of the first week of June except it was pretty much a continuation of being cared for by those expert nurses & family members Mary Ann and Annie. After Annie departed June 7, my worry about excess fluid in the surgically implanted “drain” let me to the surgeon’s assistant who on June 9 removed abdominal staples told me that perhaps my new drain pipe (aka “Ileal conduit”) was leaking urine into the abdominal cavity but if so it could be repaired with a short visit back to surgery. Wonderful, that only added to my worries of real and imagined complications. And, worry as many of you know, leads me to every more thoughts and obsessions. June 14 was the official first post op during which time the two-meter long kidney catheters were quickly YANKED …yikes. Bracketing that fun time, were two trips to the Ostomy clinic where Susan, the overworked and harried nurse, replaced my bag not once but twice as the first began leaking in just two hours. A new appointment was set for two weeks as they were so busy couldn’t see me before then.
(Sidebar: The bag and the attachment mechanisms are designed to be replaced every 4-7 days. For more information see: http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Ostomies/UrostomyGuide/ Yes, I continue to worry of another leak…most likely at inconvenient times. Oh yes, Portland’s Ostomy nurse specialists are available only during regular M-F office hours and we were advised that few nurses or docs in emergency rooms have any recent experience in dealing with such issues…In USA there are Ostomy nurses available by phone IF we are on their subscription plan for the ongoing expendable supplies.)
Next day was our second visit to the medical Oncologist, Dr. Marcus Braun who reviewed the surgery, the pathology report (stage 3a, N0, M0 ) wants us back in three weeks to determine whether the body will then be recovered enough for setting a start date for a likely recommended four rounds of Chemo consisting of three weeks each
With plus or minus three weeks between courses. Also, Dr. Braun discovered angry skin near the bag and suggested we visit an Ostomy nurse. ---Called to see if we could get in but could find no room at that inn. (See above) However, another hospital’s Ostomy nurse did graciously allow an appointment 3pm Friday.
(Sidebar: IN the meantime, we will be trying to find a Palliative Care specialist who will advise our options as bladder cancer is not very susceptible to Chemo AND around half of us cancerstan bladder neighbors have over 50% survive five years in any case.)
Friends continue their visits (as controlled by Mary Ann, scheduler)
Thursday the surgical drain was pulled and so now a collection bag is hanging on the right side only. J Friday morning, June 17, urine began leaking and so Mary Ann tried a bag replacement and we found skin and adhesive was in some places seemingly irretrievably connected…so long before appointment time, we headed to the hospital for help from the Ostomy nurse who showed us how to separate skin and adhesive. She introduced us to and laid on a layer of skin protection/second skin covering and we were all sealed up with a new bag…Weekend was more worry, sleep, visits and on Sunday family dinner fixed by John F., Rachelle and Lisa.
Revelations continue…
For the next year, extensive tests will be required every three months as well as anytime there is blood in the urine (and I have been told, all radical cystectomy survivors will now and again have blood in the urine.)
A powder & spray combo is available to keep skin from becoming angry or torn.
As I now understand, if we do recommended chemo it make take more than six months.
Sleep continues to be fitful and episodic.
Through it all, cancerstan continues to teach me. Slowly, ever so slowly, I have gained some added mobility
Hopefully, this is the week I will combine some more exploring of the local area along with exercises to build up the body. The exercises include walking (beyond the 0.5 mile I’ve been doing the last 10 days), repetitive cycles of leg lifts along with arm strengthening arm exercises of biceps and triceps using 2.5# weights.
That’s some of the news from near cancerstan on June 20, 2011
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