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.

bad news

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

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!

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.

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.  

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.

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.

There's No Place Like Home

"The reports of my death have been greatly exaggerated." ~Mark Twain   

Les' intestines regained consciousness on Tuesday, October 29th. Mr. H the surgeon and his minions all gathered around Les' bed that afternoon while I was visiting. The blue curtain was pulled and junior surgeon proceeded to give a litany of medical terms to explain the process of the bowel awakening and the stoma beginning to work properly. 
   Mr. H examined Les' abdomen telling Les the NG tube could come out and Les could have coffee, tea, milkshakes and then Wednesday progress to "sloppy foods." Les' face lit up like Christmas. Mr. H followed this up with "the histology report is back and the team has met to discuss it. The margins on either side of the tumor we removed are clear...and we consider this a curative re-section." Then he stood up, straight turned towards me and continued, "Mr. Biggs can go home tomorrow and recuperate. After a few weeks he will need to meet with Dr. J (the oncologist) to set up six months of chemotherapy treatments. After the chemotherapy has finished it will be necessary to have a CT scan every six months. After five years you are cured and an annual rectal exam is all that will be required." 
   "To reiterate then are his lymph nodes clear of cancer?" I requested.
  Testily Mr. H. snapped, "no, I didn't say that. I said the margins around the tumor mass were clear and we consider this a curative re-section." He waited, the group of junior surgeons looking from Mr. H. to me expectantly. I glanced at Les who looked confused but barely shook his head, giving a signal not to go any further into it with the surgeon at this point. 
   The only reason additional cytotoxic therapy would be prescribed is because cancer was found in Les' lymph nodes. Why couldn't Mr. H. just come out and say this? Why dance around the news, hint at it, and wait to see if I would argue with him about it? I finished visiting with Les, and he was totally confused by the surgeon's pronouncement. "If it is a curative re-section, why do I need further treatment? Why?"
   That night I sat perseverating on the surgeon's words until my stress level overwhelmed me. Anxiety squeezed my chest until I couldn't catch my breath, as I thought about how hard Les and I had to fight to get this surgery done; how rudely we were treated by Mr. H. and how quickly he dismissed Les' statement that he wanted no cytotoxic therapies, cutting Les off mid-sentence with the declaration, "What you want is irrelevant. We will give you the gold star standard in cancer treatment...if you elect not to have chemo/radiotherapy first then I would recommend surgery not be done as it would not be in the patient's best interest. Treatment before hand will shrink the tumor sufficiently so that surgery can proceed successfully; otherwise we could end up leaving some cancer behind."
   We capitulated once, agreeing to five days of radiation therapy in order to ensure the surgeon proceeded with the surgery even though the treatment Les agreed to--as explained by the oncologist--did not shrink the tumor--it supposedly stopped the cancer from growing; we were told the treatment would be a good guarantee cancer would not return to the area. Now it seemed to me that we were right back to square one. How much harder would we have to fight this time--to proceed without allopathic cancer treatment in which we do not have any faith--in order to get Les' stoma reversed in six months time?
   I thought about Les signing the Permission for Treatment form at Mt. Vernon Cancer Centre. This paperwork indicated second line cancers were possible as a result of the radiotherapy and we understood this could be the case. The form he signed the morning of the first treatment said he understood this treatment may not cure his cancer. Again, the morning of the surgery at Watford General, Les had to sign a form indicating this surgery was not necessarily a cure for his cancer. 
   Having radiotherapy increased Les' chance of cancer recurring by one third. Ct scans every six months will up the chances of cancer recurring yet again.  Most people are not aware that they absorb three years worth of average x-rays every time they undergo a CT scan. For Les that would mean six years of standard x-ray absorption each year for five years!
 Having chemotherapy would drive the odds up even further, if Les survived it.This surgery and the terrible lack of care directly afterwards have taken a toll on my husband...
   I called our daughter in law Joanne is studying to be a nurse. I told her what Mr. H. said, crying as I spoke. "I cannot watch Les go through this Jo. I can't do it. Doctors keep telling us Les has to undergo these treatments to be cured but he signs paperwork prior to each one that says these treatments cause cancer and/or cannot be construed as a cure. My heart is broken. This has taken years off my life which I fought so hard against cancer to regain. Les is laying there in his hospital bed completely confused about the mixed message the surgeon gave him."
   Joanne was livid! "Why would Mr. H. not tell you if there is cancer in Les' nodes? The way he handled this is causing anticipatory stress for both of you which neither of you need. If he isn't an oncologist and cannot say, then Mr. H. has no business telling you and Les what treatments are required. Now it's my turn to write a letter..."
   I was back to sleeping two hours a night as I tossed and turned. I could not find the off button on my brain; I could not stop thinking about all we had gone through only to end up facing another stand off on top of it all. 
   The next morning Les texted me to call him immediately. His voice on the phone was filled with excitement. 
   "H. and his team came around this morning and he was feeling quite chatty. I knew you wanted to know about those glands so I remembered to ask Mr. H. if there was cancer in my nodes, was it?  Yeah, so I did that and he said yes. He checked on the computer, and returned shortly saying cancer was found in two of the twelve nodes he removed. He asked me why I was so resistant to chemotherapy and I told him we don't believe in poisoning our bodies as a means of a cure. We believe there are other ways to fight cancer--and Jaq you won't believe what H. said! He said 'If you have the chemotherapy it will offer you a 15-20% chance of a cure. Make an appointment with Dr. J and hear what he was to say. Afterwards the choice is up to you and if you don't want the treatment, I will reverse your stoma in six months.'"
   I broke down sobbing in relief. The battle between allopathic medicine and alternative treatment for Les is over. With joy in my heart Les told me he had been released to come home and Jojo was on her way to pick me up. 
   Last night I had to keep looking left towards Les' new recliner, to see him stretched out and resting comfortably. I still could not believe he was home! My daughter Sparky called as she has every day since this all began to check on me and "Da" as she calls Les. She joked about my developing 'Lovers neck.'
   Today the district nurses came aboard and changed Les' dressing which they will do each day until his surgical wounds heal properly. Someone from Watford General also called.
   "Hello, Mr. Biggs? Yes, I am calling to check on you and see how you are doing....yes, yes...splendid. I am also calling to apologize for the error on your discharge papers where it indicates you were deceased instead of discharged."
   I'm happy to report Les is alive--all discharge paperwork to the contrary--and doing much better now. He rests in his recliner, takes care of his stoma and urinary bag, rests some more, has fresh juices, peppermint tea and our lovely daughter in law Ozlem's delicious homemade Turkish vegetable soup (recipe to follow in a future post).
   While the simplest things knacker Les out, he can sleep now in peace, knowing he is safe in my care. After lunch today we walked up to the bridge at the lock and stood for five minutes watching fellow boaters pass below us,  reveling in freedom. This cancer journey is not over yet, but our future already looks brighter...thanks again to family and friends on two continents for your help, support, encouragement, prayers and love.    

Freedom is near

I have beentold my discharbge will be Wednesday, two weeks after the surgery. To hard on the smartphone to go into detail so will xdo a better post ba k onn the boat.

Bedside news

Thanks for all thr comments. Just been told the tube into my stomach via myy nose can come out and i can start takink drinks like milk shake and hopefully go on to soup and soft foods after that. All being well i might have the IV lines out soon. Stoma nurse is happy i can handle ythat side of my recovery so things are goig well. We salute you all for your lovely support

NB Valerie Moved Today!!

"The greatest accomplishment is not in never falling, it is in rising again after you fall." ~Vince Lombardi, American Football player, coach and executive

   When I spoke with Les at hospital last night he warned me a storm was on its way and reminded me to check the water level. With all that has been going on I had lost track of the days, thinking we had only filled up last week. Half way through my second load of laundry this morning the water made an odd choking sound as it came through the washing machine pipes and I realized I was just about to run out of water. 
   I turned off the machine, threw on some shoes, loosened the ropes and off I went, cruising for water. Lest you think this was a long journey I will tell you the water point is only three boat lengths in front of where we are moored, still it is the first time I've moved the boat completely on my own without Les aboard to correct me.
   The wind was blowing up 22 MPH gusts back up the canal behind me and over towards the towpath side. I figured if I gave the engine some Welly to counteract the backward wind direction and eased off as I approached the water point, it would carry me into the side, and thus it did.
   The wind freshened my cheeks and ruffled my hair as the boat cut through the water. It felt MAGNIFICENT to be moving!! I only wished my best beloved was by my side and we were heading up the canal and back into our continuous cruising life. Soon, Goddess willing...
   While the tank was filling, I emptied the trash, straightened up the bow and stern areas, brought in three big, blue Ikea bags of wood off the roof, stacking it to dry near our stove and stacking yet more outside in the bow, under the gunnel. I hoisted another bag of coal off the roof and into the bow, filling the inside coal bucket, and when the water tank was full I rinsed out the cockpit and scrubbed the grunge off the roof where the wood had been drying through the summer. 
   My plan was to use the center line to walk the boat back to our mooring spot where the pins were still deep in the ground. With the wind blowing a hooley by now, I felt unsure of cruising in reverse on my own. Being dyslexic means left and right often become mixed up for me. I would not only be fighting my learning disability but also the ever growing gale, however a boat pulled in behind me shortly before I turned off the water spigot. Time to butch up and cruise backward with an audience. 
   Amazingly I did it! I didn't hit their boat, or anyone else's! I backed NB Val up the center of the canal, put the engine in forward gear and slid her gently right into the towpath side, slowed her down, jumped off with the center line and pulled the boat in!
   Feeling triumphant I tied up the stern to the pin, trod through the mud like a champion to tie up the bow and realized to my consternation I had tied the stern too tightly and the bow was making its way out towards the center of the canal. I ran back with center line in hand and quickly loosened the stern rope retying it loosely; as I turned to run back up to the bow I slipped in the mud and fell flat on my face! Quickly I climbed to my feet, pulled the boat in with the center line and grabbed the bow line, threaded it through the pin and tied it off. 
   With the forecast of hurricane force winds and the worse storm to hit Britain in 25 years headed our way this evening, it was crucial I tie the boat in extra tight and secure. I struggled as the wind tugged NB Val away from me. I am five feet one with vestigial limbs and the boat weighs 18 tons--but I am proud to say did it!!
   I took a moment to revel in my victory, sopping wet with water, gooey mud clinging to me from the tip of my nose to my ankles, but I did not care. I laughed triumphantly, loving the feel of the bracing wind on my face and the use of my muscles. Life is brilliant and I am blessed. I wonder now that I have been christened in good old English towpath mud, does this mean I am a proper boater???

From the patient

Wow what a trip! First a big thankyou to all you lovely folk who have offered help of all kind to Jaq. Secondly please excuse the typing errors as sitting here on the ward thpi g on a so called called smart phone is not easy. All i see is the keyboafd so spotting mistakes is hard. Thanks to the care a d love of Jaq a lot of issues have been addressed and the care i a. getting now is first class. I feel much better and just last evening the bowel that decided it fancied goig off for a little rest and telaxation has now started workink again. At the moment my intake by moth is testricted to 30ml of water per hour. Of coutze i have fluids via an iv. So things are lookin Anyway just a short few words to let you know things are on the way way up. Soon be back homme.g up and thanks to Jaq's confidence on board have not a worry about nb Valerie our home.

My Cup runneth Over...

"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them." ~John F. Kennedy

   I grew up in Alaska which breeds tough women. Les calls me his Alaskan Grizzly. I learned early to be independent and rely only on myself for survival; to make no excuses, and accept none; to do whatever it takes to keep going, putting one foot in front of the other.
   I grew up in an extremely dysfunctional family, surrounded by violent alcoholism. In Spenard where we lived part of the time everyone knew what a "Spenard divorce" was; it involved alcohol and guns and someone would be dead or seriously injured at the end of it, negating the need for divorce attorneys. I witnessed several by the age of six, including that of my own parents--after my father "gambled my mother" in a Cribbage game and lost.
   Those gunfights one sees in western movies which appear so thrilling, are terrifying when the men facing each other with guns are your father and step-father and they are shooting at each other in a crowded bar--over you.
   There are relations in my family who would cut out my heart and eat it for dinner and never even say thank you for the meal. So I learned to be fiercely independent and never to trust others at a very young age. It is not inherent in my upbringing to ask for help...
   So imagine my great surprise and delight at the help which has been forthcoming from all over the canal system.To quote another boater whose blog I loved to read and miss dearly, Mo on NB Balmaha said once in a post "Boaters are lovely people aren't they?" Yes indeed they are!! I have discovered that 2000 miles of navigable canals and rivers with boaters stretched out thither and yon does not mean one is alone. Help is only a blog post away.
   While my beloved daughters, son-in-law and friends in North America are too far away to do anything but despair at the past three months of unfolding events involved with Les' health care, their phone calls, emails and FaceBook posts have nourished my soul. 
   Over here on the canal in the space of a week I have been blessed by emails, phone calls, and texts from boaters across this network who have empathized, raged, advised, written letters and contacted officials, organized rides to Watford for me, offered entertainment options for Les, and oh so many other things. Thanks are due:
To Mike Griffin-NB Albion Mills and the community of boaters here at Cow Roast for offering us space to moor up, and for keeping an eye on NB Valerie when we are not here. I know our home is safe because this community is keeping an eye out and the peace of mind it affords me and Les is priceless. 
To Mike Wall-NB Indpendence who has offered me a ride to Watford on Monday. Bless you Mike!
To Maffi-NB Millie M. who breasted up, took me to dinner, offered to stay on, informed other boaters of our situation and is acting as a go-between for those who wish to help Les and me. Maffi doesn't just take care of the environment by picking up the garbage others leave behind; he takes care of friends with the same care and commitment. If there is a golden heart medal then Maffi deserves it. 
To Sue and Ken Deveson on NB Cleddau for their love and friendship since I arrived in this country and for their quiet practicality and fine companionship; for meals with laughter, boat laundry done at their home, retail therapy and moral support. To say we love you both dearly is an understatement!
To Andy and Tina Elford-NB Ytene, dear friends of Les since his early boating days, they folded me into their friendship with open arms and loads of laughter. Thank you both for being steady friends, always there, checking up on us and making sure we were okay. We love you both very much.
To Tom and Jan--NB Waiouru for contacting the hospital CEO as someone with professional knowledge of risk management; for the loan of a mini-pad loaded with movies for Les to watch, and for practical assistance with preparing my Leave to Remain paperwork and insight on the Citizenship exam which I must undertake in the next couple of weeks. With everything else going on I've been too scattered and exhausted to focus and my time is running out on my spouse visa. All must be dealt with properly before December.
To John and Jackie-WB Pippin for an open ended offer of diesel, coal, and wood delivery whenever we may need it, and for friendship that is golden.
To Heth-NB Takeitteazey for moral support and practical blog writing advice.
To Angela Walsh-NB Bright Eyes for the offer of rides to Watford and fresh beet root for Les' juices when he returns home from hospital.
To Jacquie Leek-NB LikeDucks2Water--for for phone calls, commiseration, moral support. Girlfriend you are a gem and I love you gobs and bunches!!
To Pip and Roger-NB Windsong for moral support and practical advice. 
To Carol and George Palin-NB RocknRoll/WB-Still Rockin' who have been a soothing voice of care in the midst of the storm.
To Doug and James-NB Chance, for absolutely making our week with a visit on the way down to London and for offering any help we might need. Thank you for bringing us laughter!!
To Joe and Leslie-NB Yarwood for using their personal and professional contacts to bring Les' unbearable situation to the attention of Jeremy Hunt, MP and Secretary of State for Health.
To Neil and Kath--NB Herbie for stopping to check in with me and for an offer of help with whatever is needed.
To Sarah--NB Chertsey for her incisive stock taking of this situation and her prescience in copying our blog posts and saving them.
To Colin-NB Black Pearl--away in Afghanistan, sending us his support for our fight against cancer from the front lines of a war zone.
To Jo and Keith-NB Hadar who've offered moral support from the start; the same for Mike and Phil--NB Garnet who befriended Les via the blog all the way form Canada.
Nev and Rachel Wells--NB Percy, for moral and practical support in dealing with the system. 
To Ian and Irene Jamieson-NB Free Spirit, who've faced cancer and its treatment in this country head on and come out the other side. Thanks for your personal courage, excellent example, moral support, and Irene--Goddess bless you for your magnificent photos of nature. I go to your blog every day to see them and they nourish my Witch's soul. Witches worship nature and nature is our cathedral. Your pictures allow me to do just that when I cannot find the time or energy to seek out nature around me. Thank you for helping to keep my soul alive. 
To all those who follow our blog from all around the world: Michelle and Barry, Mick the Mechanic, Carol Ives, Ian and Karen-NB Tacet, fellow American Valeri Jack--NB Stardust, Carrie and Derek Bird-NB Uccello, Sue and Vic-NB No Problem, Graham and Jill-NB Matilda Rose, Beryl andDave-NB Sokai, Kevin and Harry-NB KevinTOO, Tony and Helen Porter for the offer of assistance and whose boat name escapes me--sorry; Chris amd Jennie Gash-NB Tentatrice; Geoff and Mags-NB Seyella for blogging about Mag's recovery from a stroke and for the chin up hug! If I missed someone please forgive me...the list is long because we are so very blessed by each of you. 
To all those cancer survivors and people who have faced cancer with a loved one. Thank you for sharing your stories of courage, love, and loss; for opening up to me with your experiences of traditional cancer care and the effects both short term and long term with which you now must deal; thank you for your courage in the face of the scourge which is this awful disease.
To Bryce Lee in Canada who is my "pen pal" as we used to say in grade school, only its email pal now. Thanks Bryce for sharing your horrendous ordeal with me, and for your continual offer of moral support, comfort and encouragement. It is my great privilege to share what I know with you and I look forward to hearing about the effects of Gerson and fresh juice on your recovery from cancer and its treatment. Your courage humbles me.
To those who've written me by the many, many dozens thanking me for sharing my personal cancer experience, and why I chose alternative cancer therapy, and who have been grateful to find credible information regarding the same. Micheal Gearin-Tosh was living proof; his friend and colleague Beatrice at Oxford University was living proof. My friend Gail M. is living proof. I am living proof...and we are not alone; we are legion.

Aftermath

"There are two primary choices in life: to accept conditions as they exist, or accept the responsibility for changing them." — Denis Waitley, author

  Sue and Ken Deveson of NB Cleddau are dear friends--more than friends really; kindred spirits, cousins of the heart and soul. Sue picked me up today and took me to Ikea for some retail therapy. We met Ken there and chatted, laughed, and cried over coffee. Ken offered to introduce me to his MP Nadine Dorries who sits on the Health Bill Committee if Les and I were not offered acceptable resolution of the issues we've faced throughout his health crisis. 
   Sue drove me to see Les today and I had a sneaking hunch we were going to be met by the ward authorities since Les phoned to say they queried him this morning about amongst other things, our blog.
   Les took the last three blog posts back to draft form so we could double check that I had in fact included no false statements. I found one item which was related to me by the patient Stephen who rescued Les from his tangled tubing in the night which Les--now coherent and able to relate the story to me fully--said was an error so I removed it, and rechecked all past posts having to do with Les' illness and his treatment, against my notes. I asked Sue if she would serve as an impartial witness if we were approached as I felt there was less chance of any bullying tactics if any exchange was witnessed by an outside observer, and she agreed, bless her heart.
   Les felt well enough to get up on his own this morning, and use the bathroom in which to bathe, and his stoma has started to work. He had used hardly any pain meds and he was allowed to sip small amounts of water every hour. He was relaxed and happy at feeling more alert, and seeing some progress with his stoma.
   About an hour into our visit the ward matron and the ward sister came and asked to speak with me and Les. I indicated that I wanted Sue to stay. They pulled the curtain around Les' bed and the interview commenced.
   We were told the agency nurses responsible for the issues last Tuesday night would not ever set foot in the hospital again. All well and good, however the agency nurse in question should never have been allowed to to work in the hospital--he clearly lacked the professional training necessary to perform skilled nursing which jeopardized patient health, recovery, and lives, and the NHS is ultimately culpable for the management and oversight of its facilities; Les' healing from surgery has been negatively impacted by the experience and it should never have happened. He was terrified, depressed, and frightened to fall asleep.
   The matron was surprised I had any issues with her nursing staff. She said the fifth floor ward has excellent nursing staff, has never had any complaints and she thought we had a good relationship. We reviewed some of the things I wrote on the blog and she did become a bit defensive but in the end was open to listening.
   She wondered why I had not come to her or the ward sister with my concerns. I said that repeatedly Les and I both had asked nursing staff for assistance addressing certain issues and had not gotten anywhere. Why would I think she could address them for us--especially since one better be filled with high octane rocket fuel to keep up with the matron. She is literally everywhere at the speed of light as she attempts to get patients admitted, find beds, wrangle staff and all the other things she does in her 8-5 job which begins hours before eight a.m. on many occasions and typically runs far past 5 pm, as it did on the night Les had surgery. Since my interaction with her was during Les' admission process and during his actual surgery it never occurred to me that I would approach her about the inconsistencies in Les' care. The brochure given to us on the day of his surgery included her number to contact regarding surgery. We don't have wards or matrons in the U. S. so I cannot compare her position to anything with which I am familiar. 
   I was also honest about Les feeling agitated every time I attempted to point out any issues or concerns to staff. He feared reprisal and didn't want me to say anything as a result, chewing on me to keep my mouth shut and not speak up. I can only shake my head in alarm if patients worry about such things when seeking address of issues which adversely impact their health. It was pointed out to me by Sue that Les is in a very vulnerable position as a patient who is reliant upon the NHS and its staff for help in getting better. 
   I discussed my list of concerns over Les' treatment the past week including the surgeon who allowed Les to "have whatever he wanted to eat or drink" the very first day after an anterior resection and stoma surgery, and who selected Les for the enhanced Recovery Programme (as far as I am concerned the post surgery patient should drive the plan--not the other way 'round. I don't care what statistics indicate. Les isn't a statistic--he's an individual); the enhanced recovery nurse who left Les sitting for hours and never helped him get up and walk or advised him on appropriate foods after surgery; and the general ward nursing staff issues which have been detailed in previous blogs. The matron wrote them all down and told us she would investigate each of them. Fair enough...and Les is satisfied that he is now receiving the quality of care he deserved all along. 
   My final comments: Why should I have to tell the managers in charge of the staff and/or the floor about these issues? If they are there practically 24/7 as it has been suggested, and they have nursing staff who are not afraid to come to them if issues are raised then why aren't the managers and charge nurses aware these issues are occurring? Management should know what takes place on their premises and with their staff. The public should not have to point it out; the patient should not have to point it out. Hopefully now we can move forward from here on out.
    With regard to nurses in general, I don't want our readers to think I am slagging them off. I personally think a lot of physicians are overpaid divas with knowledge a 1000 feet deep and 2 inches wide (I am speaking from personal experience here as a patient and a university educator). They waltz into a patient's room, spend five minutes checking things out and move on. It is the nursing staff who generally know the patients as people and understand how patients think, feel, and are responding or not responding. They are the ones who work most closely with patients and provide the actual care. A great many nurses are brilliant, professional and compassionate.
   I've made a point from the first day on Les' ward, to thank each nurse individually when I noticed them providing good quality care and looking after my husband and there were several who were wonderful. 
   When I chewed on a nurse Saturday afternoon for being slow to respond to Les' ever increasing pain and the issues with his bloody medicine pump, I also made a point of apologizing to him before I left. Scared, concerned relatives make a nurse's job more difficult and I recognize that for the fact it is. I don't make excuses for my behavior--and I don't accept them for the behavior of others. 

Poor Excuses and False Assurances

"An excuse is a skin of a reason stuffed with a lie." ~Billy Sunday

  How do I even begin to tell of the past 48 hours? Those of you who are British and have had satisfactory dealings with the National Health Service (NHS) will find our story utterly unbelieveable.
   Everywhere I turn lately all I seem to get are excuses for incompetent behavior and poor customer service, or someone ringing their hands while they assure me things will change. I'd frankly like for the excuses and hand ringing to stop; it would be refreshing to see someone actually step up, take responsibility for the issues and problems and take direct action to ensure these things do not continue. For myself, I am shocked, in shock and under so much stress I am living minute by minute so the stress doesn't eat me alive.
    On Tuesday the 22nd, I was surprised to receive a phone call at 10:30 am from a ward nurse updating me on Les' condition. She said he had been up walking twice, had bathed, was wearing fresh pajamas, had eaten corn flakes for breakfast and seemed to be doing better. When I arrived Les was tired, listless, and quite uncomfortable, his belly bloated and tight looking. The junior surgeon came around while I was there and inserted a rubber drain in Les' stoma to draw off wind which he assured me was the likely cause of his swollen, bloated feeling. Les asked if an x-ray might be in order and junior surgeon replied, "Well an x-ray would actually tell me less than what I can learn just by looking at you."
   I also asked for the cannulas to be moved from the top of Les' right hand near his wrist because every time Les bent his hand it set off the medicine pump alarm and it stopped feeding him pain meds. The staff generally ignored the pump alarms which were going off all over Les' ward and left them to beep interminably. I was told by a junior doctor that "someone" would look into moving the cannulas.
   Les was also now on Nystatin which is an oral antibiotic/antifungal medicine. He has thrush which is a yeast infection in the mouth. It makes everything taste like crap and while the Nystatin will address the infection, I told Les to stay away from sugar because yeast feeds on sugar.
   The charge nurse begged to differ; the infection was caused by all the meds they've been giving him and sugary desserts and hot cocoa drinks made no difference at all.
   Just as sugar is cancer's favorite food, it is the favorite food of many bacteria and viruses. I didn't say his thrush infection was caused by eating sugary dessert--I said the sugar feeds the infection, and let's not do that.
   As usual with allopathic medicine, the mindset is just to throw a nuclear bomb at the disease/illness/infection and disregard the body's attempt to fight it. Les' body is already working overtime to heal from surgery and the medicines they are giving him are very hard on his liver. Why make it necessary to medicate him even further in order to beat the thrush when cutting out sugar will allow the medicine to be more effective?
   I stayed late Tuesday, stretching out my visit to three hours. I didn't want to leave Les because he was complaining of feeling bloated and his belly was beginning to swell. No one had anything to say about this except "this is to be expected after surgery like you've had, etc. etc. etc." 
   I arrived back to the boat at 7:30 Tuesday evening to find Maffi and Molly breasted up next to NBVal, his boat light a welcome site cutting through the darkness. Sadly, I'd missed Kath and Neil on NB Herbie who moored briefly behind our boat and left me a lovely message. Apparently I also missed out on meeting a lovely anonymous couple who follow our blog and happened to be in the area, hoping to say hello. Maffi invited me to dinner at the Cow Roast Inn. I hadn't eaten since the day before so I gladly grabbed up a torch and off we went. The food was good, the conversation and company was terrific.
   Maffi and I chatted over tea and coffee in the morning while I finished making a pot of homemade chicken soup and the marine engineer Darren worked on our alternator. Oh yeah, the alternator crapped out on me Monday. Deader than a doornail. I hadn't told Les; after all there isn't anything he could do about it from his hospital bed. I moved money from our savings to checking in preperation for the damages and tried to ignore the growing pile of dirty clothes breeding in the wardrobe. (For those who don't live on a boat, the alternator must be on and our engine running in order for the boat system to handle the high electricity demand placed on it by things which draw a lot of wattage like the washing machine and the juicer. Ours is a Pure Sine Wave 3000 watt invertor and they cost thousands of pounds to replace.)
   I was lulled by a fairly quiet night into thinking I would see Les in the afternoon and he would be a little bit better; perhaps he might even have scored some sleep. I said goodbye to Maffi and headed off for the bus to Watford with a small thermos of homemade soup for Les. I decided to arrive fifteen minutes earlier than 2 p.m. thinking he would appreciate having his hot soup nearer to lunch time. 
   As soon as I came up on the ward I knew something was amiss. One of nurses rushed over to me saying Les had a bad night and the doctor had ordered an NG tube (Naso-gastro tube) inserted. Les had been moved to a new area and would I please wait outside the ward until they were done with the procedure?
   The junior ward sister (junior charge nurse) Marian came and got me. She has been a bright spot in Les' care and as far as I can tell is one of the few involved in his care who are competent and compassionate. As we walked into the ward Marian told me Les had a very bad night but she got the NG tube in and I could see him. 
   Les' bed was now in an open bay right across from the nurse's station. I pulled the curtain away and when Les saw me he broke down crying. His eyes were wild--his face drawn with agitation and fear. I threw down my back pack and put my arms around him, holding him while his body wracked with sobs.
   All Les could tell me in between crying and catching his breath was that he lay in agony all night, pain so bad he could not keep from crying out. The nurse on duty wouldn't answer his calls or help him. Finally he was sent down to x-ray by a doctor who then ordered the NG tube and inserted it. (Revised for accuracy on 10/25/13).
  When Les woke later that morning he was thrashing about and the NG tube pulled out so Marian had to repeat the procedure for the third time, but at least she knew how to do it properly and with a minimum amount of pain to Les. She's a very good nurse indeed.
   Les was so agitated and wild as he told me his story in fits and starts I knew I was missing some pieces and I had no idea to whom I should go to find them. This is when Les' old ward mate, a sharp eyed, quick witted Scotsman named Stephen, came over and sat with us. He explained it all as I sat listening in shocked disbelief...
   Tuesday evening, October 22nd, the hospital was short staffed on the fifth floor. To cover the night shift a temp agency was contacted and temp nurses staffed the ward. The charge nurse was a man from Kenya who was not fully fluent in English and apparently understood even less. 
   Stephen watched in horror as the night's events unfolded and finally when he could take it no more, he took things into his own hands. Bear in mind this man is fifty something years old, and has been through chemotherapy for esophageal cancer, followed up with surgery which removed a lung, several ribs, his esophagus and remade a new esophagus and stomach from some of his intestines. He has been in hospital for ten days now. Stephen's bed was located across the ward room from Les, about 8 feet away. 
   Stephen said the Kenyan nurse was completely out of his depth, unable to help any of the patients, and so he simply ignored call lights and patients calling our verbally for help. Les woke in agony, his belly stretched so taut he thought it might burst. He "lay in this state for nearly eight hours, begging the charge nurse to help, to get a doctor"--to get somebody please!!! 
   At one point Les became completely tangled up in all the lines running into him: IV pain med, IV  fluid, bladder tube, abdominal drain; he couldn't move without tearing something out, his pain med pump packed up and quit working and the alarm was ignored all night, medications were disbursed late to paltients because the Kenyan and his minions who were also temp agency nurses could not establish order, no one competent was in charge, and chaos reigned.
   Finally Stephen could not stand to watch Les' suffering so he got out of his bed dragging his IV pole with him, and went over and started untangling Les' lines. The charge nurse ordered Stephen to stop and get back in bed and Stephen refused to do it. They had words, and the nurse walked out of the ward and left Stephen to do his job!
   Earlier in the evening the elderly gent in the bed next to Les needed to pee but had no urinal. He asked the Kenyan for a urinal. The nurse stood in the middle of the ward room, glanced around and replied, "I don't see any urinals. I will have to go find one," and walked out. He did not return for forty minutes. When the nurse came back to Bay 6 he did not have a urinal in hand. It seems he had forgotten all about it. The gentleman was in severe distress now and asked again for a urinal. The charge nurse said there weren't any and turned to leave again. Stephen blurted out, "Hey, I am on a catheter, he can have mine, I'm not using it," and handed his packaged urinal to the Kenyan who refused to take it.
   "Oh, no, no. He cannot use yours. I must go and find him one." The charge nurse left the ward and Stephen got out of bed and gave the old gent his urinal. 
   Stephen has no idea who called the doctor that suddenly showed up in the wee hours to take Les down for x-rays, but Stephen did say the doctor was angry and upset at the state of affairs on the ward. He was also not impressed by the cannula placement in Les hand and inserted new cannulas further up Les' arm.
   Apparently when Les' surgeon made his Wednesday morning rounds it was decided Les' bowels are not awake and functioning yet after all, so Les has been ordered off all food and fluid by mouth. Several cups of bright green bile were pumped from Les' stomach that morning, easing the bloated tightness the junior surgeon assured me the afternoon previously, was "probably just wind." As soon as the shift change took place at 8 am Stephen found the charge nurse (Ward Sister) and told her exactly what occurred. By the time I arrived, order had been reestablished. I stayed all day Wednesday and Stephen's lovely partner and her friend offered me a lift home after visiting hours ended at 7:30 pm. It turns he lives nearby in Tring.
   As I sat by Les' bedside Wednesday afternoon he drifted off to sleep only to jerk awake with fear in his eyes, looking around the room until he saw me, upon which his lids would slide shut. This happened three times. Les thrashed awake one last time, his brown eyes found mine, a small smile played across his lips, and he closed his eyes and slept, knowing he was safe with me nearby. I sat for two hours, tears weeping from the corners of my eyes and sluicing down my cheeks as I watched Les sleep; his forehead creased, frowns chased across his mouth, his fingers jerking, his cheek muscles twitching under his skin. 
   Back aboard NB Valerie, I started the engine (my neighbors know the situation and have graciously consented to my running the engine for an hour at night if I come home late from visiting Les), brought in some wood and coal, scraped out the ashes, started the fire, and once everything aboard the boat was in hand I climbed into a scalding hot shower and balled my eyes out, leaning against the bathroom tiles, sobbing until I couldn't catch my breath. 
   I visited the Patient Advocate Liaison's office today. I was told I could make an informal complaint which would be addressed by the Ward Sister. That seems totally irrelevant to this situation. The ward sister on the day shift was not in charge of the night shift. She is not responsible for what took place and she has already assured Les "that nurse won't be back on this ward again." But that is not enough. Of course the PAL is an entity of the NHS which I believe will cover its backside and leave British patients to pay for an ongoing litany of egregious errors and misconduct. Lives were endangered by the incompetency of the people hired by the NHS to cover the shift on Les' ward Tuesday night. 
   When I saw Les today he broke down and cried twice. He feels like he is imprisoned in an asylum and he is frightened he won't recover because of the incompetence of the surgeons, nurses, and staff who have been responsible for the decisions regarding his care--or the overt lack of it. The paper I purchased for him in the hsopital store ran the following headline story: "NHS Targets and Secrecy are Hurting Patients, Doctors Warn." The BBC headlines cried: "NHS Whistleblower...Faced Bullying culture."
   A half an hour after I arrived to visit today, Les' IV fluids ran out and his alarm went off. I timed it. The alarm ran for 22 minutes as staff at the nurses' station only feet away ignored it completely and only when Les buzzed the call light and pointed to the empty IV bag did anyone replace it and shut off the alarm. This horrible experience has left a scar on us both that may never heal. We face two more operation in the months to come and I do not know if I can face up to them at Watford General Hospital.