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Saturday, November 30, 2013

Six Week Post Operative Appointment

Hard to believe six weeks have passed since the surgery and amazing to realise everything that happened in that time.

So we took ourselves off for the 10a.m. appointment with the surgeon who examined the wound and enquired how I was managing the stoma. Strange that having surgically removed the cancerous tumour and gone on to create the stoma he did not want to examine the latter. I had taken a clean stoma bag in anticipation of this.

I did question the timescale of the future surgery that would reverse the stoma and give me back the human sewage works that works for so many of us. His reply was that in about 3 months time he would see me again and then an endoscopy would determine that the lower bowel had healed without leaks and that the reversal could go ahead. So in fact this will be about 6+ months from the original surgery.
They tell you this time is to give things a chance to heal and naturally we think of the bowel re-section after the tumour removal. Wrong!
We were told a while back by a very shocked stoma nurse of many years experience that we should have been informed it`s the radio therapy damage to the bowel area that needs to heal.
 Perfect example is Jaq had the same surgery as me. Except she had no radio therapy and no stoma was needed as within 4 days her bowel was functioning normally.

 Now while mentioning Jaq I must tell you how she amazed me today. Sitting in the boat not allowed to do hardly anything I watched her get a bag of coal off the roof and bring it to the front deck. These bags weigh some 50pounds and she just scooped it up in her arms and stepping into the front deck put it gently down. In past weeks she said she huffed and puffed and dropped the bag to the floor so her fitness is improving along with my health.

Anyway back to the future timetable of my recovery, the table has been set and I will deal with each course as it is served.  In a matter of months after hopefully a less invasive surgery I will once again function normally and can easily deal with the stoma care during this time.
Catheter clinic Monday and the hope is it will be removed.

Thursday, November 28, 2013

Strange phone call and just recovering.

First of all thanks to you all for your good wishes and I`m sorry it`s been a week since  posted. The fact is I have been quite exhausted since my discharge after the infections.

I so  miss not cruising and blogging as we go although I must say at the moment I have no desire to go anywhere on the boat. That tells me there`s a long way to go yet in getting fit. Need to fatten up so if anyone has seen the 28 pounds I lost just send them on please. Jaq in the meantime is feeding me up with anything I want.

I am working on a little historical piece about our enforced home here at Cow Roast but  Something that did catch my eye on page 2 of the December TowpathTalk was Canal River Trust reporting some facts on continuous cruisers. Sixty seven boats in 2013 each month declared continuous cruising on their licence application, this is of course our licence declaration.
The surprising thing is that on top of this an average 36 boats per month change their status from a home mooring to Cont. cruising. Now we can only guess but this sounds like people are feeling the credit crunch and rather than give up boating all together are saving marina fees and leaving their boats on the towpath to be moved as the mooring limits dictate.
I realise a lot of boaters are working and cruising and commuting to work from different locations but I think this is not the case of the people leaving the marinas except in perhaps a very small number. No I feel they are leisure boaters feeling the financial squeeze.

Now the strange phone call;
Last Friday Watford hospital phoned trying to arrange an appointment for a pre-op check up. Now I have been aware that some solution to the Urethra/Catheter  was needed but have never discussed any surgical procedure with anyone let alone a surgeon.

The person on the phone had no idea of anything and promised after I explained my recent connections with the 5 star NHS accommodation called Watford hospital to get the surgical teams secretary to phone on the Monday. Now I have recently found out she works 8am - 3pm but not Mondays, why did I not have a job like that in all my 43 working years.

 My main concern over the next few days  was I did not, having just come out of hospital for the second time, feel fit enough to endure another surgery.
Anyway no phone call so the last 2 days I have left messages at about 4 different numbers I thought might bring results. Today I spoke to the secretary, the head of the Urology and the head nurse who I will see on Monday for my flow test and hopefully the removal of the Catheter.
It seems none of these people had any idea of why the call was made and reassuringly told me no surgery was planned and perhaps someone had entered an incorrect patient number.
At the moment I have the post op appointment tomorrow with the cancer surgeon and the Urology on Monday. Big thank you to Mike for the car ride on Monday.

A couple of days ago we had to attend a meeting at the settlement checking service. This was to have Jaq`s application for leave to remain in the UK checked and the relevant proof of cohabitation, financial and other documents copied and forwarded to the Home Office.
The fee of  £90 ($115) was worth it as not only were some errors spotted but important documents  such as passports needed certifying by the immigration officer and returned to us after the interview without going through the postal service.
Big thank you to Tom on Nb Waiouru for suggesting the service.   Jaq wants the indefinite leave to remain as Tom recently obtained.

All that is left is to wish folks across the pond a Happy Thanksgiving day.

Thursday, November 21, 2013

Still here for many more dinners

Very nice it was to have dinner not in hospital but on board Nb Valerie. Of course it could have been so different with all my future dinner dates being heavenly!!. I count myself lucky to be married to a very intelligent and loving  lady who all along has watched my back, researched my condition, and been on the look out for side effects such as deadly Sepsis. Thanks for my life Jaq!

The three lots of anti biotics I was given soon gave not just the Sepsis but also the Cystitis bugs that were also swimming around my urinary system notice of eviction. So strong were these drugs that within four hours of the first course my appetite returned and staff rallied round to find me sandwiches, yogurt, jelly and rice pudding as the evening meal had long been served. The doctor said this was all quite normal and down to purely the strength of the drugs that had to match the urgency of my situation.

My stay this time was thankfully just a few days and started off in the Acute Admissions Unit assessment ward.  This was followed by a stay in another ward and my final night following a lot of late night emergency admissions was in a day unit that was quickly brought into night service for homeward bound patients. Like a game of pass the parcel. Big difference here four floors below the surgical ward was the standard of care was fantastic ALL the time.
The day unit I spent my last night in dealt with catheters for cardiac patients on a day visit basis but bed shortages on the main wards meant it being staffed overnight by two nursing staff, on overtime,looking after just two patients. Best night sleep I`ve had in hospital, dark and quiet.

The following morning our breakfast was served and after a bedside wash (I`m confined to bed/chair owing to lowish blood pressure) it was time to await the doctor and my discharge. By now there is a full day staff on as day patients arrive for their cardiac procedures and I am informed I am booked to have some Urology tests in the Radiology dept.
After initial panic and re-assurance it did not involve needles I did manage to find out it did involve the men`s toy dept and that a local anaesthetic would be used. Looking out the window I decided tying the sheets together to escape was not a good idea in my very weak condition.
Along came the porter and from a wheelchair I had my first look at the hospital from a sitting up position. Up to now my only description would have been the ceilings viewed from a bed as I have been transferred flat on my back. Below is the parts of this link that are relevant to my two tests.

Retrograde urethrogram is another radiology test to evaluate urethral strictures. This test basically entails placing a small urinary catheter in the last part of the urethra (closest to the tip of the penis). Approximately 10 cc of an iodine contrast material is slowly injected in the urethra via the catheter. Then, radiographic pictures are taken under fluoroscopy to assess any obstruction or impairment to the flow of the contrast material that can suggest urethral stricture. This test provides useful information about the location, extent, and size of any narrowing in the urethra as well as the shape of any possible abnormalities.
Anterograde cystourethrogram is a similar test but can only be done if there is a suprapubic catheter in place (a urinary catheter placed in the bladder through the skin in the lower abdomen). Iodine contrast is then injected into the bladder via the catheter and its flow out of the urethra is radiographed under fluoroscopy.

Anaesthetic or not men this makes your eyes water and while it goes on your manhood is fixed in a frame to keep it straight. Still stiff upper lip- Mmmm perhaps not the right words to use but you can imagine how I feel with just me and the doctor outnumbered by the female staff in the room 4to2  I just tell myself it doesn`t hurt. It was interesting watching on screen as the contrast solution flowed around my waterworks. No side effects other than a little blood during first pee.

Waiting for the results of these tests made my eventual discharge be very late afternoon but the results were clear. I have a Urology appointment December 2nd so perhaps more will be revealed then.
All this Urology business is because during the surgery a catheter could not be placed in the urethra as is standard practice. I still have the one into my bladder via my abdomen. I can still pee as normal or via the catheter and in fact am instructed to use both.

Wednesday, November 20, 2013

Guess Who's Coming for Dinner?

   Just a very quick post to say Les is home now and comfortably ensconced in his recliner; PJ's on, fleecy blankie over his lap, cuppa tea and Foxes super chocolaty cookie for a nibble. Chicken Marsala Pot Pie is on the menu for dinner and maybe a blackberry-apple pie with those lovely apples Angela left on our bow yesterday.
   I brought coal and wood inside this morning so it is nice and cozy on NB Valerie. The day started off with mist, then drizzle which quickly built up to torrents of rain pouring from the sky--drops hitting the surface of the canal and popping like pop corn! Soon enough that too passed and we had hail followed by snow flakes. Now it is sunny with blue skies. I am waiting for the hurricane at four pm and then we will have experienced all the world's weather in one day!
  Les' incisions have healed over cleanly now thanks to the mega doses of antibiotics. He slept for over seven hours last night, nestled in the clean down duvet and pillows, a smile from ear to ear. Peace reigns aboard our floating home once again.
   We offer grateful thanks to everyone who came to our rescue: Bev, Joanne, Kevin; Anonymous Angie, the Two Mikes from Cow Roast, Ken and Sue (NB Cleddau). We are grateful for all of the comments and the private emails from so many who wrote to say they follow our blog(s) and have for several years. Again Les and I have received a world wide hug. As we in the Craft say, "Merry meet, merry part, and Blessed Be."

Monday, November 18, 2013

She's Frayed Around the Edges While He is Slowly Recovering.

“Music is the literature of the heart; it commences where speech ends.” ~Alphonse de Lamartine

    I've resumed the daily trips to Watford General to visit with Les. Our thanks to Mike Hill and Mike Griffin for the rides into town. I feel like a princess with my two gallant knights looking after me.
   The one-two punch of massive doses of Gentamycin and Picicillin seem to have restored Les to the living--in fact his appetite came back so quickly and he felt so much better yesterday that he began to minimize the entire episode. The miracle that is broad spectrum antibiotics makes it all seem like a distant nightmare to him. He doesn't realize that with Sepsis, every hour of delay in treatment raises the chance of death by 7.6%; this is according to an abstract written by researchers from the University of Manitoba, Canada studying Sepsis treatment. (Critical Care Medicine,2006 Jun;34(6):1589-96). Les is grateful he is feeling better.
   His incisions and surgical wounds have closed up and scabbed over like magic, and his energy is slowly returning. He only weighs 143 pounds and we desperately need to put meat on his bones. I am also concerned that his blood pressure is still low and he is not receiving any IV fluid re-hydration since yesterday, yet the AAU doctors are talking about allowing him to come home tomorrow with a prescription of antibiotics by mouth. 
   He is definitely experiencing the side effects of Gentamycin--hearing loss, mental fuzziness and forgetfulness. Hopefully these things will clear up as time goes on. Blood tests indicate that after his last IV of broad spectrum antibiotics twenty four hours ago, his system is still fairly flooded with them which tells me his kidneys are struggling. Usually they are cleansed from the blood stream within two-three hours after the last dose if renal function is normal.
   Saturday night after our daughter in law Bev brought me home around 9:30 pm, I was too restless to sleep. I cleaned boat, and finally fell exhausted into our bed with my clothes on about 1 am after my previous blog post. 
   When I returned to NB Valerie after visiting with Les on Sunday with step-don Kevin, I had the pleasure of several hours spent with Ken and Sue Deveson (NB Cleddau), who came over to put up the plastic membrane on the windows for insulation. Ken has the process down to a fine art! They left with three large black bags of bedding linens, a down comforter (duvet), and three pillows which needed washing and drying after Les' sweat drenched episodes. We are blessed by your loving care and friendship and so appreciate your help. 
   The plastic really does make a difference. I woke at 4 am and it was so warm inside I had to crack the back hatch to return to a fitful sleep. Finally I gave up and got up, sweeping and wiping down the stern and bow decks. I started the engine promptly at 8 am, washed a load of clothes and hung them to dry, downed a cup of coffee and moved the boat up to the water point to fill up and then back again, which takes about forty five minutes.
   Mike Griffin picked me up and drove me to Watford and I stayed for two and a half hours with Les. When I arrived he was asleep; his slight, shrunken frame outlined by the pale blue hospital blanket. My best beloved looks so small and vulnerable, curled sideways in the hospital bed.
   My heart aches when I think of what we've been through, and how robust Les was when we met. I love his compact, wiry, muscled shape and that certain smile he has when he throws his head back and laughs from his belly--something he will not be able to do literally for some time until his internal incisions heal fully.
   We had a good visit though and I sat with Les through lunch then dashed for the bus which I missed. I walked the short ten minutes to Watford High Street and waited for the 500 back to Cow Roast. Finally I returned home at 3:30 to meet Ken with the freshly washed and dried bedding for Les. He brought a bag of coal off the roof for me, and handed over a bag in which Sue had tucked some yummy shortbread and Foxes really Chocolate cookies! Bless them...Les' eyes will light up when he sees this stash.
   I brought in coal and wood, tidied up, finished drying, folding and putting the laundry away, made our bed with the freshly laundered linens and duvet, spraying them with lavender scented linen water, and collapsed in my recliner in front of the fire. My joints were aching badly from the cold, wet weather. I turned on the engine, ran the Ebi for thirty minutes to really heat it up in here and took a scalding hot shower. I stretched out in front of the wood stove in my nightie and thick socks with a fleecy blanket for cover, passing three hours listening to some of the best music ever produced by humankind with only the light from the fire. When my soul feels spent and my spirit is broken I turn to music and nature for healing. 
   I began with Domenico Scarlatti cantatas, moved on to Vivaldi's Four Seasons, Johan Pachelbel's Canon and Gigue for three Violins, immersed myself in Beethoven sonatas and parts of his Symphonies: the second movement of Symphony No.7Symphony No. 5, and the joyous 9th symphony, the second movement which I was introduced to at age five as it was the theme for the CBS nightly news in the U.S.
   Goose bumps rose on my arms as I lost myself in Violinist Joshua Bell's evocative work in the soundtrack for the movie The Red Violin. Tears coursed down my face throughout Barber's Adagio for Strings. This piece captures the true depth of longing in the human heart and soul.
   I rose skyward on beating wings with Ralph Vaughn William's astonishing Lark Ascending. Beethoven's Moonlight Sonata brought me back to a sombre peace. I finished with Maurice Ravel-eyes closed in rapture as I pictured Torvill and Dean gliding sensuously across the ice to Ravel's Bolero at the 1984 Olympics in Lillehammer, Norway. Soul rested and spirit mostly restored I am listening now to Canadian pianist Glen Gould's Variations of Bach Transcriptions--Cantatas and Fugues on piano.
   I have the love of family, the company of friends, and the support of boaters across the British waterways; I am accompanied through this trial by some of the greatest musical composers and artists ever known. I just need my best beloved and boon companion back and on the road to health. We have come far but we have so much farther to go...

Sunday, November 17, 2013

SEPSIS!

“What do we say to the Lord of Death?"
"Not today.”  ~George R.R. Martin, A Game of Thrones

   Before Les went into hospital I was surfing through the NHS website and found a big blurb about Sepsis. Apparently this relatively unknown illness is rampant in the UK--especially amongst the very young and those 65 and older, those with cancer and those who've undergone recent surgery. 
   I found another link to the Sepsis Trusts' Survive Sepsis website. The video I watched scared the hell out of me.
   Sepsis is blood poisoning--an infection which gains access for various reasons, to the body's blood supply, traveling throughout the body and attacking vital organs. Early stages feel like the flu: malaise, lack of appetite and extreme tiredness. This can go on for several days upon which it is accompanied by dehydration, slurred speech, fuzzy thinking, very high fevers with nights sweats that soak you, violent shivering, mottle skin, shortness of breath, blue lips, cold extremities, violent vomiting. Think Toxic Shock syndrome.
 I wrote down the symptoms and the "Sepsis Six"--the six timely treatments which save a person's life and tucked it away in my cancer notebook I kept for notes of all Les' appointments and transcripts of all conversations with health professionals regarding his treatment. And then I forgot all about it. 
   Les came home from cancer surgery and was doing well. His appetite picked up, his energy level grew slowly over the initial two weeks and the sunken cheeked, concentration camp look was beginning to recede from his features. He was sleeping well, going for brief walks outside and his sense of humor returned. 
   Les handled his stoma quite well. He changed the bag daily and emptied it frequently. Community nurses came in every day to change Les' bandages and assess his incision sites and general health. Slowly the incision were healing although they were attended by a pale yellow, creamy gunk and started to smell slightly. Now I have a VERY acute sense of smell and often small sour in milk before anyone else can even taste it. The incision in which the bladder catheter protruded from was swollen, red, and concerned me.
   I had a bottle of Hibiclens which I bought from the states. This is surgical scrub disinfectant solution. When I was scheduled for surgery the doctor asked me to stop by the pharmacy and pick up a bottle ($4) and wash all over with it in the morning before reporting for surgery. I also used it for wound after care at home on my incisions. I had three fourths of a bottle left and i brought it with me in my medicine chest when I moved here.  
   Les asked the nurses to call thirty minutes before visiting so he could shower each day. I removed his old bandages, and told him to wash his incision with Hibiclens. The nurses came shortly after assessed his wounds and applied fresh bandages. After he began using Hibiclens, his incisions looked much better and they began to scab over nicely; all except that bladder catheter site. 
   Wednesday afternoon Les seemed somnolent. He dozed and had no energy for a walk. His appetite, which had been building, suddenly disappeared. 
   Thursday I took my exam and Les was alone for four hours while I did some shopping for a grocery trolley and extra track pants for Les. When I returned in the early afternoon, he was awake and had a bite to eat but really wasn't hungry. A new set of community nurses visited and said all seemed well, but my spider sense said something was off. Les was quiet; a malaise fell over him. He slept all afternoon and early evening, and seemed confused and fuzzy in his thought process. I felt Les' forehead and he had a slight fever. He also developed shivers as bedtime approached. I warmed his bed and PJ's with a hot water bottle. He slept all night. 
   Friday morning Les looked terrible. That gaunt, starved look was back. He refused breakfast, had a small bowl of soup for lunch and ate no dinner. He drank water and juice steadily saying how thirsty he felt. It was almost as though Les had narcolepsy. He would nod off in the middle of a sentence and wake up shaking so violently Les appeared to be having a grand Mal seizure. He complained of exhaustion and weakly said he had to go lay down. It was 9:30 p.m. 
   Les called out to me in the middle of the night in a panic! I ran down the boat to our bedroom and I was shocked by the sight: it looked as though someone had drenched Les and our bed with a fire hose! His hair was sopping wet, his pajamas were dripping water. The down duvet was soaked through, Les' pillows were soaked and the sheets were sodden!
   I thought he had sprung a leak somewhere and I was peering closely at his incisions. He thought he had peed the bed but nothing smelled of urine.  I rang the water out of his pajamas in the bathtub, hung them to dry, got him dried off, dressed in clean, dry pj's, changed the bed and got Les settled down with a fresh hot water bottle, dry blankets and I went back to bed. Two hours later it happened again!
   After a repeat of drying. cleaning, re-bedding and a refilled hot water bottle we both slept through to 8 am this morning. I woke with a very bad feeling and decided I was going to observe Les closely and call the doctor if he seemed in any way worse.  My mind kept replaying the violent shaking spell and his mental disorientation.  
   Les didn't want to eat any breakfast. 
   "Baby you have to eat. You've lost thirty pounds since surgery and you have no fat left on your body. If you don't eat you begin the process of muscle wasting and you won't recover Les. Please baby, please eat."
He forced down half a piece of toast, part of a small bowl of organic oatmeal and a glass of orange juice. All morning he shivered. About lunch time I looked back through the cancer notebook and found the Sepsis notes. Immediately I knew Les had Sepsis and every moment we delayed brought him closer to death--and he was totally clueless. 
   Of course he wouldn't listen to me. I was overreacting, blah, blah, blah.  I wanted to call an ambulance. Les wanted to wait for the visiting Nurse, especially since today it was Jeremy who was scheduled and he is a favorite of ours. He is a good nurse who has gotten to know Les well. I reluctantly agreed. 
   Jeremy arrived about 1:30 p.m. and as soon as he came in the door I said, "Jeremy Les is extremely ill--I think he has Sepsis." The nurse quickly kicked off  his shoes, came inside, examined Les and agreed. He left for the office to talk with his supervisor about what we should do next. Fifteen minutes later Jeremy called me and told me to call the community nurses main number, explain Les' symptoms and I would be patched through to a doctor. 
   I called the number and it rang, and rang, and rang, and rang--endlessly until finally after over thirty rings someone picked up. I explained who I was.
   "Hello, yes my name is Mrs. Jaqueline Biggs. My husband Leslie is quite ill and needs immediate attention. He had surgery for rectal cancer on October 16th and has been home recuperating since October 31st. Since this past Wednesday he has slipped into a malaise. He is exhausted, has no appetite, suffers from violent shivering, extreme night sweats, he is confused, disorientated, dizzy, has mottled skin, cold extremities, cyanotic lips, and Oh my God he just threw up violently--twice! He has Sepsis and needs immediate treatment."
   "Okay Mrs. Biggs, I will pass on your concerns and an out of hours doctor will ring you. If you don't hear anything shortly then call 111 and they will tell you what to do next."
   I wanted to call and ambulance ASAP but again Les declined and we argued about it. He begged me to wait for the doctor to call. I waited for thirty five minutes and finally snapped.
   "I am an American Les. We don't stand around waiting while health care professionals endlessly discuss the merits of someone's symptoms until they die. WE DO something! I'm done and I am calling an ambulance NOW!"
   A paramedic arrived to the boat about twenty minutes later, took Les' vitals, took notes and called an ambulance. The out of hours doc called and spoke with the paramedic and then apologized for taking over an hour to return my call. She said the nurse who referred my call told her Mr. Biggs probably had a mild infection and was feeling unwell." UNBELIEVABLE!!
   We arrived to Watford General Hospital A and E about 4:45 p.m. The emergency room doc took his vitals, listened to my description and nodded affirmatively when I concluded, "He has Sepsis." Broad spectrum antibiotics were started intravenously right away. As I waited in the hallway for them to get Les settled in an ER bay bed, a paramedic came out to speak with me. He told me the ER physician thought Les had Neutropenic Sepsis--a side effect of the radiotherapy. Son of a bitch...something else the oncologist neglected to enlighten us regarding.
   Finally I stepped inside the blue curtained cubicle with my best beloved. Les was scared and broke out in tearful anxiety attacks, his lips thinning in a rictus grin of fear, hands shaking uncontrollably. I tell you now that death was in that room with us--a faint presence seeking a more permanent outline. My heart was in my throat but I hid my fear and swallowed my exhaustion, stroking Les' face, holding his shaking hands and reassuring him we were where we needed to be now. It was natural to be frightened, he has been through so much...
   We were in the A and E for just under two hours. a physician came and gave Les a very thorough exam. This medical doctor was a very young man who looked just like Harry Potter--I kid you not! He even wore the same eye glasses as Harry. He said Les' urinalysis showed infection bacteria were multiplying in his bladder. I said I was sure the bladder catheter was the main infection route. 
   Les is resting now in the Watford General Hospital Acute Assessment Unit where he will be given more antibiotics through his IV, and they will watch him closely for the next three days.
   80,000 people lose their lives annually to Sepsis; 30,000 of those in the UK. Please, please follow the links on this post and learn all you can about it. It may be the difference between life and death for someone you love.

Saturday, November 16, 2013

bad news

sorry to be bearer of bod news but was rushed into hospital.Jaq will updaate laterf

Friday, November 15, 2013

Passed!


   After Six months of studying the "Life in the UK" Handbook I took my exam this morning. The test centre gives one 45 minutes to complete the 25 questions. It took me six minutes and I missed one question: Which court deals with Civil complaints? a. County Court b. Magistrates Court c. Crown Court d. High Court. I thought it was a. but I chose b. This was a pass/fail exam but I remember my questions--especially the two I felt stuck on. So I looked up the answers in the handbook when I arrived back home. I feel like a five hundred pound gorilla has been lifted off my back. It is such a relief to have that daily background anxiety gone. Now I can focus more fully on taking care of Les.
   On Tuesday the 26th we have an appointment with the Settlement Checking Office in Hertfordshire to review my application and documents for Leave To Remain (of which the pass certification letter is one), pay the £1059 application fee and submit everything to the UK Border Agency, and try not to become anxious all over again as we wait for an answer.

   A very special thank-you to Tom on NB Waiouru for advice on the exam, for suggesting we use the Settlement Checking Service, and for vetting my personal statement. Your support and encouragement based on your actual experience with the same have meant the world during this stressful time.  Thanks also to Ken and Sue Deveson-NB Cleddau, and the two Mikes from Cow Roast--NB Albion Mills and NB Independence, for moral support and encouragement. A special big hug to my lovely daughter in law Joanne Biggs for taking me today, and for a celebratory Costa Latte after!

Tuesday, November 12, 2013

The Fuel Boat and the Chimney Sweep

Two completely different days:  Monday was raining hard as the fuel boat Towcester came alongside.
 Jules and Richard run the service under the name of Jules Fuels. 07740487222. On this section of their run (Stoke Bruerne to Hemel Hempstead) they pass through every four weeks. Not sure about the northern route but I believe it is up to at least Braunston and perhaps further. We appreciate the opportunity to give our custom to working boats. We also appreciate that Jules and Richard's diesel comes with a bio fuel additive already in it that fights diesel bug. We have also been extremely satisfied with the good quality coal they sell.

Today being warm and dry, Jaq decided to let the fire go out and clean the chimney. You have read of my admiration of Jaq`s ability to move the boat for water. Now I must add "chimney sweep" to the list. All I did, actually it was all I could do, was stand by and give directions.
Afterwards Jaq said it was a very satisfying job, seeing the amount of soot that ended up on the floor of the stove after the chimney was scrubbed. All I can say to my fellow male boaters is--can your partner take over the boat if you find yourself incapacitated?  I am so glad Jaq was so quick to take control of NB Valerie three days after arriving in the U. K. and has in the last two years, gone from strength to strength.

On the health front appointments have come through for a follow up exam with the surgeon and a first time appointment with the Urology dept. The latter is to test the flow through the urethra with a view to removing the catheter. This would still leave the small op to correct the urethra problems. These appointments are at the end of this month.

In the meantime the surgery wound is healing well although the catheter is a nuisance hanging inside my pants especially since I can still pee normally, but it might be out soon. As for the stoma, I need to live with it for a few months and then surgery will be scheduled to reverse the procedure.  I find the stoma easy to maintain but question the advice to empty the pouch several times a day but only put on a fresh pouch every two days or so. I am going to use a fresh one daily.

Saturday, November 09, 2013

A Bit of This and a LIttle of That

“What day is it?"
It's today," squeaked Piglet.
My favorite day," said Pooh.”
― A.A. Milne
 
   The days since Les has come home are blending together now as a routine has worked itself out. We are enjoying the quiet, peace and privacy. He is resting and thrilled that "we are chilled out and relaxing and resting." Notice that "we?" ;)
   As soon as I am up every morning (7 am) I don't dare lounge in my jammies. I get cleaned up in the bathroom and get dressed because as soon as he gets up his stoma and urine bag, etc. will take center place in the loo for awhile and its best if I am cleaned up and out of the way especially since the loo is only a tiny room 4ft by 4 ft.
   While he is emptying and cleaning up, I make his bed, make my bed (I am sleeping on the fold out dinette bed because otherwise our bed would have to be pulled out into its full 6 ft and 6 ft mode to accommodate us both and either he would have to crawl over me or vice versa in order to use the loo in the night), rake out the wood stove, bring in more coal and wood, revive the fire, and by now he is sitting at the dinette feeling "peckish" and wanting breakfast. 
   I start him on his medication rounds, juice oranges for us, fix his organic oatmeal, do the breakfast dishes, clean the juicer, and finally sit down for a badly needed cup of coffee. Les eats, dresses, and collapses in his recliner. I am already thinking about laundry, moving the boat for water, what to fix for lunch, when to make the next batch of juice, making sure the boat is tidy and organized when the visiting nurse comes to call, working online, etc. etc. etc. 
   It really is good to "just chill and relax though, doing nothing!!" It really is a good thing I love him dearly!!! And really good I am a woman because I don't think most men could deal with "six impossible things at once before breakfast," as Lewis Carroll's Alice commented in Through the Looking Glass.
   Seriously though it is grand to have my baby back home. Each day is a new experience for Les as he has never been seriously ill before now. He was the patient his doctor called "The man who never needs to see me." This has all been extremely difficult for an active, healthy man used to being up and about his business each day without giving any of it a thought. Now he has to think about how to get from the bed to the bathroom; the mechanics of getting dressed and keeping warm. Now Les knows what I mean when I say, "I feel like I've been reincarnated as a limp dish rag."
Old decor: IKEA chairs, upholstery etc.
   Before Les went off to hospital we purchased new chairs for the saloon. It's funny how our minds travel in the same direction at the same time...each of us was searching on our respective computers for something suitable with which to replace our uncomfortable IKEA Poang chairs. Neither of us said a word about it to the other!
   Les was never really comfortable in those chairs so we knew he would feel even worse after abdominal surgery. I also figured he would have a terrible time rising out of the chair on his own since one's bum sits lower than one's knees. 
   Les went to his stalwart favorite source for all things boaty--Canal World Forum where a chap mentioned he found brilliant recliners for just under £100 at B & M which fit in his narrow boat! After chasing down a B & M store fairly near us in Bletchley, son Kevin took us to view them. Les measured them--and the recliners were narrower than the IKEA chairs. Sold!! 
New faux leather recliners--comfy!
   It was an easy bit of work for a brawny lad like Kev to help Les bring the chairs inside. They came in two pieces which fit through the door sideways and slotted together perfectly. Viola!! For the first time in my life as a short shanked person, I have a reclining chair that fits me. I don't feel like Lilly Tomlin's character Edith Ann sitting in daddy's over-sized chair!! Les can easily stretch out and unfold his surgical area, falling asleep easily in his chair. He is comfortable and finds it easy to sit and rise.
   The other bit of interior decor which required attention before Les' surgery
close up of threadbare dinette cushions
was replacing our dinette cushions. Worn with six years of use, the thin, cheap foam was disintegrating at the corners and the cheap, thin material had completely worn through in places--threadbare and sad. I knew one of us would be sleeping on the dinette bed and neither of us was going to find comfort or rest on the old upholstery.
   Again Les found the answer--the shop in Watford where he purchased the large chunk of foam to make our bed extension back in 2011. A trip to The Upholstery Workshop with daughter in law Bev allowed us to choose solid, high quality five inch thick foam for the cushions and a hard wearing, easy washing material for the covers. I chose Teal which accented the new red tiles Les installed around our hearth last summer. The shop owner was very accommodating in our need for speed due to Les' impending surgery--while he was quite busy, the chap pushed our order through in three weeks time and the new cushions came home to NB Valerie just shy of a week before Les came home too. We paid £348.00 for the three new cushions with covers which we thought was a great deal. The work is very high quality and we recommend this shop without reservation.
New cushions, coordinating throw pillows & plant
   Of course new cushions meant a re-do of some of the other bits of our interior design, so I replaced our throw pillows with new ones in red, and teal with a touch of light wheat to pull in the wheat colored curtains on the windows. I replaced our blanket wraps which hung over the backs of our old chairs, with soft red fleecy blankets to tuck around us while we lounge in our new recliners, enjoying the warmth of the fire. 
Sue, Ken and my favorite boater!
   

   Les' first days home were punctuated by a welcome visit from friends Ken and Sue Deveson. It cheered us no end to see them both, and we had a good natter over cups of coffee. Sue took me to Tesco's for a grocery top up while Ken and Les poured over some lovely canal related books Ken and Sue thoughtfully brought for Les to borrow and read. They also brought me a plant--a cyclamen the exact scarlet color of our new decor!
   We will hold them both in our thoughts as late November comes on and the Devesons fly to the States to enjoy Thanksgiving on the 28th with their son, daughter in law and grandchildren--the Cali Crew (California).
   Meanwhile on NB Valerie, we give thanks for Les' recovery and each other; for old friends and new along the canals and across the world; for the love of family here and in the States, and for the comfort and love we share with one another.  

Tuesday, November 05, 2013

Things You Come Home With

   The first picture has to have some boat theme because of late this blog seems to have changed to a medical blog although, judging by communications from readers a lot of folk are interested in this side of our present life.

   This picture shows our current mooring--home for the last three and a half weeks. Canal and River Trust are fully aware of our situation and although we get logged on the system our overstay is acceptable. Obviously they can look at their sightings log and see our previous cruising has taken us all over the canal system, which recognizes us as genuine Continuous Cruisers.
   We have the one mooring space that lies between the edge of the winding (turning) hole and the bridge that spans the marina entrance. To the side of the boat we have a width of grass that enables Jaq to put up a washing line on favourable days, Monday was both sunny and breezy; Jaq caught up on the backlog of laundry caused by her travelling back and forth to the hospital.
   Just behind the camera is a lock, and a lane offering parking for visitors with access to the main road for Jaq to use a bus although mostly she has been given lifts by family and boaters on long term CaRT moorings opposite.
   Many thanks to the two Mikes (NB Albion Mills and NB Independence). Your help is much appreciated. Also to the lady who called across offering help to Jaq yesterday as  she set off to reverse back to our mooring spot from the water point. I soon realised why Jaq thanked her but declined help, as I stood inside the boat looking out--and watching in awe as Jaq took us to and from the water point.  Her words after were "oh I just had a good teacher." My answer is "no darling I am fortunate to have the best pupil in the world."
   In the last post I mentioned the boat resembling a small pharmacy and you can see what I mean in the picture below right, that shows just some of the items.
To re-cap: the original admission was for removal of  a cancerous tumour from the lower bowel and a temporary stoma (loop ileostomy) to allow the bowel to mend.
   I have a few pictures of my abdomen and the stoma but think some might prefer not to see them and others that do can have a Google. The stoma to me represents a new born baby that continually needs nappy changes and cleansing around what seems to be a never ending exit for waste products. Jaq calls it my "mini me" since it gurgles and chugs.
Complications set in during the surgery when they tried to fit a catheter into my urethra--it wouldn't go. The surgeon called in a Urologist (who just happened to be finishing up a surgery in the theatre next door) who inserted a subcubital catheter  directly into my bladder through the lower abdomen. I now have to return in the future for a small surgery to correct a narrowing and twist in the urethra.
   Meantime I now have two ways of emptying my bladder. Are you thinking if the natural way works why the catheter? When the Urologist came to see me I was having other problems and my attention was not 100%  so the answer was not absorbed into my brain. I think it was because the natural exit for the bladder might stop working. Anyway this is the reason for perhaps 70% of the goods pictured.
   The catheter has a tap and I`m told to use both systems when using the bathroom. Now this works fine and as you can imagine when in the future I am out and about a visit to the loo is easy enough.  A large supply of night bags are in the supplies but these are advised to be used at night in case the normal body alarm fails to wake me. The bag just connects to the tap and the bag hangs below the bed; in my case on the drawer front. There are some other things I won`t need and I have just handed them to the nurses that come daily to change my incision dressing so they can be used by others. The problem is everything is ordered at the hospital but my subsequent orders will be made by me and will be just for what  I need.
   These companies that  have their foot in the hospital door take over your supplies by collecting prescriptions. 75% of stoma nurses are sponsored and although general prescription charges are down stoma costs have rocketed. The complimentary gifts you choose with your order are costing the NHS a fortune. Things like individual wet wipes, disposal bags for stoma pouches, miniature water spray bottles, squares of lint for drying around stoma. Oh and a fancy bag to store everything with the promise of a travel wallet, to carry enough for a day or two away, to arrive with my next order. These so called complimentary gifts are just stuff you can get in the supermarket at a fraction of what the NHS is charged.
Some links Here and Here.
   I have had a needle phobia my entire life and have at times, had to have my arm held down when a needle comes near, in case I throw my arm away from the needle. Now during this two week stay in hospital I have had so many catheters put in and then moved, had daily blood taken from a new vein each time the fear has slightly worn off.
   Clexane  was prescribed for me daily as an anti blood clotting injection for about 28 days post op. Hearing that this will probably go on longer than the daily visits by community nurses changing the surgical wound dressing, I decided while in hospital to try and inject myself. My reasoning is to skip wasting the visiting nurses' time which might be used by someone more in need.
   Pinching a fold of skin between thumb and index finger, in the needle went and down came the plunger. I still don`t know how I do it but such was my fear that each time I take an invisible bow to a non existent audience. Just about 10 more to go.
   A lot of things came back with me to the boat but one thing that didn`t make it was Mr. C.  He quite literally got cut out of the coming home deal. I am still very weak but at least now  I can sleep for long periods at night and also doze in the chair during the day.

   Just a look back at a couple of memories to remind me  why I`m now fighting to get fit:
Moored in the heart of Lymm village on the Bridgewater canal.

The grounds of Dunham Massey hall just a short walk from the Bridgewater
 That`s it folks. I`m going to watch Man U on TV tonight. This view of the ground taken as we entered Manchester, again on the Bridgewater.

Saturday, November 02, 2013

Blog from the boat

Hello everyone. It feels god to be sitting at the dinette here on the boat with the Laptop in front of me.

Those of you who have had major surgery will be aware of the post operative feeling of tiredness and weakness. Myself never having been in this situation find myself totally amazed just how weak I am. Having a shower wipes me out for at least 30 minutes.
Catching up on sleep has been top priority and sleeping six hours the first night in a very dark, quiet environment aboard made a big difference. This sleep pattern has carried on with extra daytime two hour naps common.

The second thing to catch up on is the loss of weight following nine days without solids. Initially I just had tiny amounts but the last two days have seen my intake increase quite a lot. Strangely in the past a Yoghurt was very much a no no on my daily diet and in fact had never tried one always having expected them to be something that was going off and having a vile taste. Now Jaq has me hooked on them with Blueberry being my favourite.

The boat resembles a small pharmacy where apart from the usual pain meds associated with a hospital discharge I also have Urology and Colo-rectal supplies, lots of fresh dressings for the daily visits by the area nursing staff plus some self injected meds but more on that another blog post.

Since being back on board I`m hearing more and more of the wonderful kindness shown by so many of you and hopefully Jaq has either privately or via the blog thanked you and I back those thanks a thousand fold. Just one I will mention is the lovely boater who I`m sure wishes to remain anonymous. The day I came home this lovely lady returned some bedding she had taken away to launder and dry. Again today she returned with some lovely vegetables from her allotment. Jaq and I are so grateful to you.

Ok just typing this has worn me out and I need to stop.