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Wednesday, December 04, 2013

Too Sick to Live, too Well to Die...Still I Feel Like a Naughty Teenager!

 "Simple pleasures are always the last refuge of the complex." ~Oscar Wilde

   Finally after nearly seven weeks we were able to sleep in the same bed--our big six foot by six foot cross bed with the Oh! so comfy mattress of 1200 hand tied box springs wrapped in memory foam. Clean, crisp sheets, the goose down duvet, and Les cuddled up beside me. Heaven! Indulgence!! Whoopee!!!
   I am recovering from exhaustion. I hit the wall so to speak when Les went back into hospital for sepsis. I don't mind doing everything on the boat--it is our home and I take pride in keeping our home clean, warm, and comfortable. Whatever needs doing to that end--be it shifting bags of coal, raking out the fire at 6 a.m. or moving the boat up for water and back, is fine.
   Somewhere along the way I put my right hip out of alignment. I am never aware of doing it at the time. And for most of us, we feel it first not in our hip but in our knees and then ankles and feet. Only after my hip had been out for three and half days did I cop to what it was. Until then though, I was in a right state due to exhaustion and the muzzy thinking process that accompanies it. I lay in the dinette bed at night experiencing deep pain in my right knee joint and the muscles directly either side. Weird truncated nerve impulses made my right calf twitch and the muscles around my left knee were now swollen and pulsing with pain.
   Eventually the pain worked its way to the bones in my feet which felt like they were being rearranged (which in a sense they were since all my muscles and ligaments were torqued out of alignment and attempting to carry on).
   In my bleary state I began to run through suspect diseases in my head. I lay there in the dark thinking, "MS--oh cripes it could be MS." I have chronic Sarcoidosis which is an auto immune disease for which I take meds daily. I was told by the U.S. doctors that once one has developed one auto immune disease it provides an opportune path for additional auto immune diseases to develop.
   Or it could be...well I lay thinking of a half dozen things like Polio--"Jesus what if it's Polio." I gasped as a picture of horror filled my head of patients trapped in iron lungs. The next frame  in my mind was of some poor soul whose muscles were constricted and frozen in the rictus grip of lockjaw--"oh God Tetanus--its other name--this is exactly how Tetanus starts," and then suddenly the light went on in my head and I thought, "It's your hip you dozy woman."
   Laughing in pure joy at my foolish assumptions, I spent the remainder of the night rolling around on the dinette bed like a buffalo in a mud wallow, working my hip back into place, giggling at myself for suspecting the worse instead of considering the obvious. I was so relieved it was something easy to remedy. My muscles and ligaments screamed over the next 48 hours as things slowly settled back into proper alignment. I probably put it out doing something innocuous like bending over to tie my shoes on the stairs of the bow.
   As for hefting bags of coal off the roof, I am proud of how far I've come in seven weeks. Back in October when Les first had surgery I would steel myself to wrestle with the coal bag. I went out, stepped up on the gunnel, grabbed the corners of the nearest bag and tugged. Of course the bloody thing didn't move an inch. So I twisted the corners of the bag into cow-eared shaped handles and jimmied it back and forth until the load shifted slightly, then leaned back and tugged for all my worth. Slowly the bag of coal moved forward. After about three minutes of this twitchy, side to side scenario the bag eventually ended up directly in front of me on the roof.
   Next I worked a fair share of the bag over my left shoulder, wrapped my arms around its middle and stepped backward off the gunnel in a leap of faith that my feet would connect with the ground. This commenced what I fondly think of as the "Coal Dance." I staggered toward the front of the boat in drunken half circles, clutching the fifty pound bag of coal like a rotund lover. When the bow appeared I threw myself in its direction, heaved the bag over the side and let go--dropping the bag of coal in the bow with an almighty, thunderous, echoing THUD. Then I climbed down gasping for air, twisted the bag corners, two-stepped it across the floor of the bow to the overturned bucket wedged against the bow locker, grabbed the bag by the bottom corners and rolled it up onto the bucket. Down and dusted!! Literally. I had no idea how fine the black coal dust actually is, or the means by which the pitch black opaque, silken powder finds its way into the wrinkles in my skin or under my nails. Sometimes I looked like I was wearing blackface--and hands.
   What wears me out is having to think for everyone. I concede to the necessity of having to think for Les. He has never been seriously ill before in his entire life and he is like an innocent lamb led to slaughter. It is obvious I have to think for myself: keep the boat going, keep our finances balanced, stock up with groceries (thanks to local boaters Mike Wall, Mike Griffin, and Angela Walsh for rides), finish instructing my courses for this semester and submit final grades, apply and submit my paperwork and fee to the UK Border Agency for Indefinite Leave to Remain (many thanks to daughter in laws Joanne and Bev for rides tither and yon). Check...
   Having to think for the NHS and its employees is what frustrates me no end; having to to think for well meaning family and friends who know Les has been through radiation treatments which have weakened his immune system--yet still appear for a visit in the midst of a cold, the flu or some other creeping crud--and forget--he should not be exposed to their germs in his weakened state.
   Les did catch a rhinovirus from somewhere which I've carefully nursed him through with heaps of Emergen-C, oral Vitamin B-12, loads of water, hot, homemade soups, tons of extra sleep, night time applications of Chloraseptic (U.S. product which numbs the throat so it doesn't hurt), and day time applications of Benalyn active cough syrup to make him pull up the mucous attempting to colonize his lungs. I've contracted it now and I am too sick to live and to well to die.
   With regard to the latest urology appointment update, we found ourselves back on the NHS merry go roundabout again.
   About three weeks prior to this appointment the Urology specialist called and requested that Les measure his urine each time he peed. She wanted to know to the milliliter what came out the normal way and what was left in his bladder to void through the catheter. We thought she wanted these figures for every pee so Les used a large surgical syringe and meticulously measured it each time, writing down the figures throughout every day for two weeks.  It turns out she only wanted the figures for the first and last pee of the day but that's okay. Les is nothing if not thorough.
   Bear in mind we were told previously when Les was recovering in hospital from the surgery that the supra-pubitol catheter was required because his urethra narrowed and had a little jog in it which made it impossible to use a urinary catheter. A visit by a urologist while Les was in hospital confirmed that an operation on his urethra was going to be necessary to widen it before the operation for the stoma reversal. Well and good...
   On Monday the urology specialist ushered us into her office. She stood behind her desk with Les' considerable medical file in front of her and pronounced, "Well I am not sure why they elected to leave this catheter in for so long but I feel confident after we measure your urine flow this morning that we will be able to remove it today because the contrast test and flow exam you had in November (while in hospital for sepsis) does not indicate any strictures or blockages." She smiled enthusiastically at Les.
   I frowned. There is a reason the urologist could not physically insert a urinary catheter into Les' urethra at the start of his anterior re-section surgery. Surely this issue has not magically evaporated...Les' eyes lit up like a child on Christmas morning at her statement.
   The catheter is a pain to drain, clean, hook a bag to each night, etc. etc. and it is heavy with a night bag attached, making sleep uncomfortably attained in only one possible position on Les' left side. I too wanted him to leave today without a catheter in place however, I didn't want his hopes raised prematurely.
   Les pulled out his two weeks of figures and handed them to the woman, who shook her head and said, "Oh I don't need to see those. I am confident we will remove the catheter today. We just need to measure your flow this morning."
   To prepare Les for the test he was requested to drink 4.5 pints of water in the hour before the appointment. That is about a day's worth of average water intake. He had done so and then some until he began to feel a really urgent need to void. So off Les went to the special room to pee in bowl attached to a very sensitive measure which charted not only how much he gave but the force of his stream.
   Back in her office she was dismayed at the results. "Oh you have no force at all behind your urine stream. This is not good, not good at all. Let's measure how much urine is left now in your bladder by emptying out through the catheter. The specialist measured his sample with the very same large 100 ML syringe Les had used at home to take his two weeks of measurement. 
   "Okay, well there is over 110 ML of urine left behind. This is not good at all. The catheter will have to stay in." She looked at me. "Your husband is going to need an operation on his prostate." Les' face turned the color of cold ash and his chin dropped to his chest. I was absolutely incensed that this medical professional had so glibly raised his hopes in the first minute and a half of meeting Les without following through on all possibilities first. 
   And while I am fairly well versed in human anatomy, the last time I covered the male reproductive system in any detail was for Sex Education in junior high school. I was confused as to why the Urological surgeon had previously mentioned a simple surgery to roto-rooter Les' urethra to widen it and now the specialist was talking about an operation on his prostate gland.
   I was aware that enlarged prostate gland (Benign Prostatic Hyperplasia--non cancerous) is a common occurrence for many men later in life and that it does cause a stricture of the urethra and a slowing of the urine stream. 
   Out came a diagram and the specialist explained the surgery.  Apparently the urethra is more like a channel throuhg the prostate gland than an actual separate tube according to her. Les mentioned that his GP had made note of his slow flow many years ago saying not to worry about it unless it became painful to pee. 
   "Well since the catheter has to stay in we need to change it. It should be changed at least every twelve weeks." Les asked if he could please go wee first as "You are going to be poking around and I will have to go then and I am likely to go all over you." Off he went to the loo. 
   "Just out of curiosity," says the specialist, "lets measure what is left in your bladder now via the catheter." Out came the syringe, Les voided via the catheter into a plastic cup, and the specialist was pleased to say, "Only 14 milliliters. That is more like it." Now at this point I stepped in with Les' list of figures. 
    "You asked Les to keep precise notes for two weeks previously. You could do him the courtesy of actually reviewing the figures and you will see what is left in his bladder each time is well under 50 mills. It was over 100 ML earlier because you asked my husband to drink a day's worth of water in one hour and that is what he did; consequently that is what you measured." She looked carefully at his notes and concurred. Then she said, "okay after I examine your prostate I think we can indeed take the catheter out." Jesus wept!!
   A digital exam found Les' prostate is indeed enlarged.  The urology specialist informed us Les will need surgery on his prostate to widen the urethra. It will be general anesthesia and he will back in Watford General hospital for two days. I asked how long it would be before he has surgery.
   "It could be as long as three months." I explained this presented a problem because Les has to recover from this operation as well as the first one in order to have his stoma reversal operation sometime in March or April. The specialist agreed to mark his case as urgent. Then she delivered the coup de grace.
   "We need to put Les on two medicines until surgery. Tamulosine will relax the prostate and his urine flow will be stronger. It can cause low blood pressure."
   "Well that is a problem because he has been diagnosed with low blood pressure since his initial surgery and the doctor said he thought Les might have had it for years and not known it."
   "Well in that case he may need to lie down for a few minutes after he takes the Tamulosine each time. We also want him to take Finestrade which will shrink his prostate gland and make the surgery go easier. I will give you a scrip for two weeks worth and then you will need to see your GP to get the prescription renewed."

   I've read the accompanying material in the prescription package and discovered Finestrade is deadly to women who are pregnant with male fetuses--it causes abnormal male genitalia just from the little bit absorbed through intercourse and male ejaculation. For every 1000 men who take Finestrade, it can cause breast cancer.
   On-line I found out that Tamulosine is an alpha-blocker originally field tested as high blood pressure medicine! One of the side effects is a relaxation of the prostate muscle.
   Finestrade was originally field tested for male pattern baldness. One of the side effects is a shrinking of the prostate gland, along with a possible increase in the development of prostate cancer!!! 
   This is a typical situation of drugs designed and field tested for one specific thing but marketed by pharmaceutical companies to physicians for other medical issues--without prolonged clinical field trials for the "other medical issues."  This is so common and I feel it is totally unethical.
   Also for Finestrade to have a maximum effectiveness, one must be on it for three months before it begins to have any effect--and we hope to have his surgery before then. But then they also say once you begin these drugs you must stay on them. And for Finestrade the benefits increase the risks proportionally.
   Needless to say Les will not betaking either of them. We've found a Solgar Gold natural Prostate Support product which he will begin taking next week.  

6 comments:

jercher said...

Yikes, Jaq!! Thank the Goddess you know better than to just blindly accept all the medications they are throwing at Les!! No wonder your head hurts!!

You are never far from our thoughts and we're still lighting candles!!

I wonder if throwing coal bags around might have had something to do with your hip situation dear girl?

Love and hugs to my sister by choice.
Bear

Jenny said...

Hi
Just read your post.My partner had laser treatment on the NHS at Basinstoke to treat his enlarged prostate 5 years ago, in & out in a day, amazing results.
Just thought I would mention it. I sometimes read the boaters blogs as in another life I would have liked to live on a boat!

Anonymous said...

Wow...that's one blog delivery!! Hope the BMA is also a regular online visitor!! (just catching up online and hoping you are now recovering some good energy....both of you!). Always a bit confused 'ticking reaction boxes' as subject matter serious but delivery humourous in part. Cool would need debate! xxA

Jaqueline Biggs said...

Hi Bear,
Yes It is good Les has me--and I have him! ;)

No I definitely didn't out our my hip tossing coal bags. I would have known immediately had that been the case. It was something simple and ridiculous and I didn't realize it until I had suffered for three days.
Miss you like the 60's misses AquaNet!

Jaqueline Biggs said...

Hi Jenny,
Thank you for sharing that with us. It is something we can ask about. Hopefully you will get a shot at living aboard a boat without having to wait for another life. Thanks for following along with us and reading our blog.
Happy Holidays!
JaqX

Jaqueline Biggs said...

Hello AW!
Yep I got it all out of my system. Drop by for a cuppa any time you are out our way. We would love to see you.
Hugs,
Jaq and LesXX

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs