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Thursday, December 25, 2014

The Best Christmas Present Ever

     As you sit there digesting your Christmas dinner or anticipating your dinner, (depending on the time zone in your part of the world) let me tell you what is probably my best Christmas present ever!
On Tuesday I had an appointment at the Royal Free Hospital in London to have my wound examined and get the results of a recent CT scan.
   No sign of any cancer cells in my colon, abdomen, chest or liver and my liver has been restored to normal function. Hearing those words sent a wave of warmth and happiness surging at tsunami proportions from my feet up through my body and exiting via a big smile.
   Jaq here; I wanted to title this post "Laughing Man Returns," because after we returned home Tuesday evening, the stress and worry melted away from us both and Les' sense of humor and happiness returned. His laugh lines were back again and we sat at the dinette reading Friday jokes from Canal World Forum and laughing until we were doubled over with tears in our eyes. We fell asleep cuddled into each other with hugs, silly grins stretching across our faces. We had our celebratory dinner last night and will just chill out the rest of the week.
   Les will travel back to London for scans and blood tests every three months for a while. And we will stack the deck in our favor in all the ways and means at our disposal as is only sensible for any cancer survivor. He has no problem now taking a raft of supplements including IP-6--a non toxic chemotherapeutic agent which has shown tremendous promise in lab trials with rats in which colorectal cancer was initiated and allowed to grow unchecked for six months, after which the rats were fed IP-6 and all colorectal cancer cells and tumors were destroyed.
   Bacon, sausage, red meat, and sugary sweets are delicious but deadly memories. We will allow ourselves a very rare occasional treat during the holidays but otherwise our diet consists of fruit, berries, nuts, veg, some chicken and fish.
    Les wants to assure everyone that while this may sound like a meager 60's hippy and granola diet, he is full, satisfied, and his sweet tooth is quite happy with a fresh homemade yogurt and fresh fruit parfait in place of cakes, pies, candy and biscuits (cookies).
   I am walking two miles a day every day to help heal my left knee which has compensated for my right S-I joint being out for most of this past year. Each day I feel less pain and more strength in my knee.
   Roll on January 30th after which we will cruise out of this marina and turn right, heading slowly north, cruising back to our lives on the cut which will be the best medicine of all!!



Tuesday, December 23, 2014

What the Brits are Wishing Americans for Christmas

(Many thanks to Adam Porter for sharing this with me on FaceBook.)

A MESSAGE FROM THE QUEEN
A MESSAGE FROM THE QUEEN 
  
To the citizens of the United States of America from Her Sovereign Majesty Queen Elizabeth II

In light of your failure in recent years to nominate competent candidates for President of the USA and thus to govern yourselves, we hereby give notice of the revocation of your independence, effective immediately. (You should look up 'revocation' in the Oxford English Dictionary.)

Her Sovereign Majesty Queen Elizabeth II will resume monarchical duties over all states, commonwealths, and territories (except North Dakota, which she does not fancy).

Your new Prime Minister, David Cameron, will appoint a Governor for America without the need for further elections.

Congress and the Senate will be disbanded.  A questionnaire may be circulated next year to determine whether any of you noticed.

To aid in the transition to a British Crown dependency, the following rules are introduced with immediate effect:

-----------------------

1. The letter 'U' will be reinstated in words such as 'colour,' 'favour,' 'labour' and 'neighbour.' Likewise, you will learn to spell 'doughnut' without skipping half the letters,  and the suffix '-ize' will be replaced by the suffix '-ise.'  Generally, you will be expected to raise your vocabulary to acceptable levels.  (look up 'vocabulary').

------------------------

2. Using the same twenty-seven words interspersed with filler noises such as ''like' and 'you know' is an unacceptable and inefficient form of communication. There is no such thing as U.S. English. We will let Microsoft know on your behalf.  The Microsoft spell-checker will be adjusted to take into account the reinstated letter 'u'' and the elimination of  '-ize.'

-------------------

3. July 4th will no longer be celebrated as a holiday.

-----------------

4. You will learn to resolve personal issues without using guns, lawyers, or therapists.  The fact that you need so many lawyers and therapists shows that you're not quite ready to be independent.  Guns should only be used for shooting grouse.  If you can't sort things out without suing someone or speaking to a therapist, then you're not ready to shoot grouse.

----------------------

5. Therefore, you will no longer be allowed to own or carry anything more dangerous than a vegetable peeler.  Although a permit will be required if you wish to carry a vegetable peeler in public.

----------------------

6. All intersections will be replaced with roundabouts, and you will start driving on the left side with immediate effect.  At the same time, you will go metric with immediate effect and without the benefit of conversion tables.  Both roundabouts and metrication will help you understand the British sense of humour.

--------------------

7. The former USA will adopt UK prices on petrol (which you have been calling gasoline) of roughly $10/US gallon.  Get used to it.

-------------------

8. You will learn to make real chips.  Those things you call French fries are not real chips, and those things you insist on calling potato chips are properly called crisps.  Real chips are thick cut, fried in animal fat, and dressed not with catsup but with vinegar.

-------------------

9. The cold, tasteless stuff you insist on calling beer is not actually beer at all.  Henceforth, only proper British Bitter will be referred to as beer, and European brews of  known and accepted provenance will be referred to as Lager.  South African beer is also acceptable, as they are pound for pound the greatest sporting nation on earth and it can only be due to the beer.  They are also part of the British Commonwealth - see what it did for them.  American brands will be referred to as Near-Frozen Gnat's Urine, so that all can be sold without risk of further confusion.

---------------------

10. Hollywood will be required occasionally to cast English actors as good guys.  Hollywood will also be required to cast English actors to play English characters.  Watching Andie Macdowell attempt English dialect in Four Weddings and a Funeral was an experience akin to having one's ears removed  with a cheese grater.

---------------------

11. You will cease playing American football.  There is only one kind of proper football; you call it soccer.  Those of you brave enough will, in time, be allowed to play rugby (which has some similarities to American football, but does not involve stopping for a rest every twenty seconds or wearing full kevlar body armour like a bunch of nancies). 

---------------------

12. Further, you will stop playing baseball.  It is not reasonable to host an event called the World Series for a game which is not played outside of America.  Since only 2.1% of you are aware there is a world beyond your borders, your error is understandable.  You will learn cricket, and we will let you face the South Africans first to take the sting out of their deliveries.

--------------------

13.. You must tell us who killed JFK.  It's been driving us mad.

-----------------

14. An internal revenue agent (i.e. tax collector) from Her Majesty's Government will be with you shortly to ensure the acquisition of all monies due (backdated to 1776).

---------------

15. Daily Tea Time begins promptly at 4 p.m. with proper cups, with saucers, and never mugs, with high quality biscuits (cookies) and cakes; plus strawberries (with cream)  when in season.

God Save the Queen!



PS:  Only share this with friends who have a good sense of humour (NOT humor)! To the citizens of the United States of America from Her Sovereign Majesty Queen Elizabeth II
In light of your failure in recent years to nominate competent candidates for President of the USA and thus to govern yourselves, we hereby give notice of the revocation of your independence, effective immediately. (You should look up 'revocation' in the Oxford English Dictionary.)
Her Sovereign Majesty Queen Elizabeth II will resume monarchical duties over all states, commonwealths, and territories (except North Dakota, which she does not fancy).
Your new Prime Minister, David Cameron, will appoint a Governor for America without the need for further elections.
Congress and the Senate will be disbanded. A questionnaire may be circulated next year to determine whether any of you noticed.
To aid in the transition to a British Crown dependency, the following rules are introduced with immediate effect:
-----------------------
1. The letter 'U' will be reinstated in words such as 'colour,' 'favour,' 'labour' and 'neighbour.' Likewise, you will learn to spell 'doughnut' without skipping half the letters, and the suffix '-ize' will be replaced by the suffix '-ise.' Generally, you will be expected to raise your vocabulary to acceptable levels. (look up 'vocabulary').
------------------------
2. Using the same twenty-seven words interspersed with filler noises such as ''like' and 'you know' is an unacceptable and inefficient form of communication. There is no such thing as U.S. English. We will let Microsoft know on your behalf. The Microsoft spell-checker will be adjusted to take into account the reinstated letter 'u'' and the elimination of '-ize.'
-------------------
3. July 4th will no longer be celebrated as a holiday.
-----------------
4. You will learn to resolve personal issues without using guns, lawyers, or therapists. The fact that you need so many lawyers and therapists shows that you're not quite ready to be independent. Guns should only be used for shooting grouse. If you can't sort things out without suing someone or speaking to a therapist, then you're not ready to shoot grouse.
----------------------
5. Therefore, you will no longer be allowed to own or carry anything more dangerous than a vegetable peeler. Although a permit will be required if you wish to carry a vegetable peeler in public.
----------------------
6. All intersections will be replaced with roundabouts, and you will start driving on the left side with immediate effect. At the same time, you will go metric with immediate effect and without the benefit of conversion tables. Both roundabouts and metrication will help you understand the British sense of humour.
--------------------
7. The former USA will adopt UK prices on petrol (which you have been calling gasoline) of roughly $10/US gallon. Get used to it.
-------------------
8. You will learn to make real chips. Those things you call French fries are not real chips, and those things you insist on calling potato chips are properly called crisps. Real chips are thick cut, fried in animal fat, and dressed not with catsup but with vinegar.
-------------------
9. The cold, tasteless stuff you insist on calling beer is not actually beer at all. Henceforth, only proper British Bitter will be referred to as beer, and European brews of known and accepted provenance will be referred to as Lager. South African beer is also acceptable, as they are pound for pound the greatest sporting nation on earth and it can only be due to the beer. They are also part of the British Commonwealth - see what it did for them. American brands will be referred to as Near-Frozen Gnat's Urine, so that all can be sold without risk of further confusion.
---------------------
10. Hollywood will be required occasionally to cast English actors as good guys. Hollywood will also be required to cast English actors to play English characters. Watching Andie Macdowell attempt English dialect in Four Weddings and a Funeral was an experience akin to having one's ears removed with a cheese grater.
---------------------
11. You will cease playing American football. There is only one kind of proper football; you call it soccer. Those of you brave enough will, in time, be allowed to play rugby (which has some similarities to American football, but does not involve stopping for a rest every twenty seconds or wearing full kevlar body armour like a bunch of nancies).
---------------------
12. Further, you will stop playing baseball. It is not reasonable to host an event called the World Series for a game which is not played outside of America. Since only 2.1% of you are aware there is a world beyond your borders, your error is understandable. You will learn cricket, and we will let you face the South Africans first to take the sting out of their deliveries.
--------------------
13.. You must tell us who killed JFK. It's been driving us mad.
-----------------
14. An internal revenue agent (i.e. tax collector) from Her Majesty's Government will be with you shortly to ensure the acquisition of all monies due (backdated to 1776).
---------------
15. Daily Tea Time begins promptly at 4 p.m. with proper cups, with saucers, and never mugs, with high quality biscuits (cookies) and cakes; plus strawberries (with cream) when in season.
God Save the Queen!


PS: Only share this with friends who have a good sense of humour (NOT humor)!

Tuesday, December 16, 2014

Narrowboat running costs -some end of year facts and figures.

 Here in the south of the country we have woken to a beautiful fresh sunny day. Ice has on several days of late, settled against the lock and to one end of the marina. If the canal does freeze over it will stop navigation so perhaps Mother Nature is sending out hints of what she has in store so keep those tanks topped up and get some extra coal now. The tanks that need to be kept empty are those connected to your toilet; those of us with composting toilets can ignore this last sentence says I with a grin on my face.

Being in a marina our choice of coal is limited and our normal choice from Jules' fuel boat has been Pureheat at £10.75($16.34) per 25 kilo(55lbs.) As this brand is not available in the marina it has resulted in our trying Pureglow at £10.50 and I must say they are almost identical in performance.

We have of course plenty of wood on the roof that is under cover and keeping dry. Our normal way when out on the towpath is to burn wood during the day, using coal in the evening and overnight. Being in the marina and near to other occupied boats we have to ease up on the wood burning so as not to let the extra smoke annoy others.

The next part of this blog post is only possible because my lovely Jaq keeps records of our boat costs and locations. I don`t need to check records to know our location a year ago because it was just about 500 yards away out on the towpath. Last October I had the Bowel cancer surgery and by December I had recovered enough to leave the boat for a pre op check for surgery on my Uretha and I   missed Alistair --a regular blog reader. Alistair while out and about snapped the sign on the left and sent it to me. The guys give the location away, it is St. Omer barracks. Alistair said it reminded him of me with my stomer after the bowel surgery. He decided not to eat there.

That was eight weeks after the bowel surgery; today it`s been six weeks since the Liver surgery and although I feel pretty good I am not going to be as fit in two weeks time as I was a year ago, as this time the surgery has been more invasive.

Again referring to Jaq`s records over the past 12 months we have used;

1037 litres of diesel. That`s 228 UK gallons at a total cost of £801.34($1218) approx. 77p per litre for UK readers.

Five 13kg (28.6 lbs) bottles of propane total cost £118.65($180) that`s about £23.50($35.72) per bottle. I bet house owners here in the UK wished they had a gas/propane bill as low as that.

23 bags of coal at a cost of £245.75($373.54). At £10.50($16) per bag that`s about the same as the current price. The bags are standard 25 kilo(55lbs).


Of course we have our Canal and River Trust license that expires the end of this month and cost £833($1266).

Insurance covering the boat itself plus we have our contents insured totals £320($486).

An added insurance we have as perhaps many boaters also have is breakdown cover. We use RCR which as well as attendance by an engineer includes replacements parts cover with just a £50 excess to pay. This at a cost of £133($202) is £2.55($4) per week.

Last year we had a drive plate -think clutch- fail, the plate costs around £140($212). The whole job including fitting cost us £50($76). if you price up some of the parts covered in the above link you will see it`s a good deal. Our gearbox would cost £700($1064) if not covered by our insurance. Remember the labour is included as is the engineers traveling time.

So we have six fixed costs over the year adding up to a total of £2450($3724) that works out at £47($71) per week.

Of course there maybe some figures that need tweaking but this gives a good guide for any reader interested. Take the coal, consumption is reduced by the wood we gather so perhaps the cost of chainsaw and it`s consumables should be included but as I say this just gives readers a guide.

Now getting to the end I realise my engine servicing has been omitted. Doing my own means just parts to price which is approx - figures in my head- about £38 each for four services per year.

Please feel free to comment especially if my figures  are wrong, I am winning the Mr. C battle so think I can take what you less troublesome folk throw my way.

The $ figures for all our friends and family across the pond are based on  £1 being equal to a $1.52cents and some figures have been rounded up/down.




Friday, December 12, 2014

To close for comfort

As my health improves each day I can finally turn my energy, what little there is, to writing a blog post. The need of pain killers is almost non existent and my appetite is back to normal, just need to heal inside and build up my energy but from past experiences this I know will take time.

In the meantime we think under the circumstances we are in the best place for now. Of course because of planning laws a great many marinas all over the canal system are classed as non residential but.........

As you can see in the picture space is not in great supply but believe me people are living like this permanently. Just scroll to the top of the blog and look at what our moorings are usually like. Open to both sides and often with views over rolling countryside and often not even another boat anywhere near.
To the right we have a jetty and the distance window to window is 41 inches!  To the left it gets worse as there is no jetty and the boats are actually a thin fender apart and the window distance reduces to 17 inches! The jetty stretches down just three quarters of the boat making it impossible to tie the boat firmly which is noticed when the wind causes the boats to bump noisily together or against the jetty.
I wonder if there are fire regulations covering space between boats, i`m sure there are for caravans.
We are fortunate that the boats either side are unoccupied and are just someones summer pleasure moored for the winter.

 As you can see in these shots through the front doors we have a large hedge blocking any view there might have been. Good access not only for nurses but also Mr Tesco makes life easier while I heal but luckily it`s not forever and although we are very thankful to be here temporarily neither Jaq or I could live like this permanently.
Boaters are such a great community, Robert having popped in from his mooring has just returned from the chandlery with some coal for the fire. If that hedge wasn`t there all we would see are the trains passing by. Luckily they are far enough to not be a nuisance in this generally quiet peaceful location.

Wednesday, December 03, 2014

Mountain High, Valley Deep: Healing Continues

"The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient's hopes are the physician's secret weapon. They are the hidden ingredients in any prescription."

~Norman Cousins, American political journalist, author of 'Anatomy of an Illness', world peace advocate

   First and foremost I wish to offer our sincerest and most heartfelt thanks to friends and family who held us in heart and mind; for the prayers, positive thoughts, ritual, and mindful healing meditation; for the phone calls, emails and direct offers of assistance; for the rides to appointments and the store.  It felt like you all had my back when things have been tough. A special thank you to Angela, Mike G. and Robert for rides and moral boosting visits and to Marilyn, Kev, and Cousin Kind Heart for...everything else.
   On the recommendation of a friend I tried the services of an Osteopath for the first time ever. After one hour of gentle, compassionate and knowledgeable care in the hands of Jane Ducklin D.O. I walked out of her office a new woman. For the first time since I injured my left foot in December of 2011 getting off the boat--it didn't hurt! My S-I joint has been out and in and out for a period of seven years and as time passed my four layers of muscles along with the tendons and ligaments around my knees, ankles and lower back have been torqued out of place and twisted indefinitely, causing collateral pain throughout my limbs. Dr. Ducklin's expertise began the process of releasing those soft tissues and helping them to return to proper alignment.
   By Saturday morning I felt like a million bucks--I had no problems climbing in and out of the boat, filling the coal bucket, bringing in wood, going for a walk or sliding our miserable heavy back hatch open and closed. In fact, I felt younger than 57--I felt like myself at 40!!
   Compare this to the week Les was in hospital and the week he came out--when I took 50 mg. of Tramadol every four hours just to stand upright, get myself down to London to check on Les and come back to take care of the boat and fix his meals for the next day. My knees felt like splintering wood every time I took a step and I could not trust myself to maintain my balance. I wasn't sleeping properly because I could not get comfortable with my S-I joints popping in and out. It was all agony...
   I've been back again for a follow up treatment and I am pleased to say Osteopathy really works! And here I thought I was destined to suffer due to being overweight, having arthritic joints, and just getting old--I've led a fairly stressful life and the past year certainly qualifies under that term--and stress accelerates aging. I was feeling closer to 80 than 57. I'm not easily impressed but I have to say this treatment worked amazingly well for me.
   Les was sent home from hospital on November 11th in the early evening after 24 hours of broad spectrum antibiotic and the removal earlier the day of his release, of 12 staples which allowed a pint of pus, dead blood cells and other septic liquid to drain out of his wound. It was left open and dressed. I had his clothes and shoes as I had planned to wash them and return the next day with clean things for him, not realizing he would be released so soon. 
   Our dear friend Angela picked Les up at 4:30 and brought him to the boat, moored up between the Dudswell locks, which is where we agreed to moor before Les went in hospital. Dear Sir jumped out of the car and came flapping down the muddy towpath in the dark, pouring rain, pajamas flapping in the cold wet, nothing but slippers on his feet. Angela and I had our hands full of his belongings and before I could get ahead of him to the boat, Les had dived over the side, hurting himself trying to get in the door. 
   He was loaded to the gills on analgesics and the remnants of anesthesia and making no sense whatsoever. He wouldn't settle down to eat, preferring instead an attempt to sort the mountain of boxes filled with drugs sent along with him.  He would scoop them towards his chest like a dragon's hoard, then suddenly stop, stand up, and walk to the back cabin, hovering uncertainly in the dark. 
   "Baby what are you doing?" I called out. 
   "I don't know, I needed to get something but I don't remember what..."
   "Come back and eat please. Your food is getting cold."
   Back Les came to take a bite or two and repeat the entire process until bedtime. The RFH staff failed to send home any paperwork detailing what drugs where given last and when--apparently we were just supposed to guess and hope I didn't overdose Les on the next round of meds.
   My Best Beloved was sent home with about a day and half worth of dressings. The Visiting Nurses (VN's) were extremely peeved as it takes three days minimum for such items to arrive at the chemists after the Nurses request a prescription from the doctor's surgery (office). The first nurse to visit and assess Les' condition felt he should not have been sent home just yet and was angry because they didn't have enough dressing to care for him properly. She took out her anger on us saying, "When the dressing arrives you will have to collect them from the surgery." Fortunately other nurses were kind enough to deliver them when they arrived. 
   Those first days were awful for us both as Les' improperly dressed wound oozed the remainder of the infection, leaking down over his stoma bag during the night loosening the adhesion. Les would wake every morning with the stoma bag hanging half off--feces everywhere, including in his open wound by day four. I wanted to grab Prof. Davidson's nursing assistant and shove her face in it. Two more days in hospital would have allowed them to be sure they had a handle on Les' wound care and given him 48 more hours to begin fighting the infection. I felt at that point that if my husband recovered it would be a miracle.    Les' condition improved slowly with many ups and downs. The Visiting Nurses are a haphazard crew. Half the time we get Health Care Assistants. Here is what the Royal College of Nursing says about HCA's:
   "As yet, there are no specific national requirements for becoming an HCA. Some employers require literacy and numeracy skills. You simply need to apply for a job as an HCA, and once you have been accepted, your employer will train you to be competent in the skills required for your job. You might want to think about getting work experience to find about what it’s like to work in health care first." (Health Care Assistant. Royal College of Nursing. ND. Web. Accessed on 26th Oct. 2014. http://www.rcn.org.uk/nursing/work_in_health_care/become_a_health_care_assistant)
  The above description is wide, and vague enough to drive a 767 airliner through. Needless to say the requirements for a Certified Nurse Assistant in the U.S. is far more rigorous, requiring a minimum of one year's schooling with a pass rate of 90% and a State licensing exam (in Washington state) with the same. It is not necessary to state "numeracy and literacy may be required"; these skills are nonnegotiable requirement in the States.  
  When the HCA's show up on the boat often they are on their own--not in the company of anyone with more skills and experience and frequently they improperly dress Les' wounds, trussing him up like a holiday Turkey, bandaging him from belly button to nipples.
  Sometimes an actual nurse or a duo of nurses arrives. It is potluck with them too. Emma is a brilliant nurse--calm, thoughtful, with experience and expertise--and she comes from barge folk so she is not overawed by the boat. She knows how to advocate for her patients with the local medical community and NHS bureaucracy. Dave is pragmatic--an experienced nurse who knows what he's doing. Denise is a competent ray of sunshine who makes us smile. We've also had nurses who spend more time gawking at the boat and attempting to interview me than tending to their patient. Some will listen to what Les says--others insist everything is done their way which means I will be redressing Les after they leave. 
   Les traveled down to the RFH for a post-op follow up. The doctor who removed his staples said the VN's had not been dressing his wound correctly. They were not packing it to keep it open and allow it to drain properly, so the doctor taught Les how to pack his own wound...and now a second small, round wound has opened where staples used to be and it is draining as well.
   Back home Les explained the doctor's orders and most of the nurses and HCA's complied although a couple were distinctly squeamish and unhappy about having to do it so sometimes Les packs his wounds and they dress them.
   To be honest I cannot blame an HCA for feeling that way. In my opinion they have no business providing wound care for patients recovering from organ surgery. Most of them recognize they are being asked to engage in skilled nursing far and away above their skill level and training.
   Needless to say Brits will understand my rage at listening to Shadow Health Secretary Andrew Burnham  MP, (Americans for an equivalent think minority Congressional member in charge of Health and Human Services committee) spouting off on Question Time about how hard he's worked to create better support for "community care" allowing people to be discharged out of hospital into trained professional care within their communities. You can bet your A** Mr. Burnham has never had to rely on the  "sterling community health care services provided by the NHS"--I imagine he goes private all the way.
   As the bottom two inches of Les' wound healed up and it wasn't so much looking and smelling like a recently gutted road kill, I became more involved in his care. Often I undo the dressings that the well meaning VN's have slapped on. I also actually clean his skin with surgical spirit, removing days worth of tape adhesive with dirt stuck to it before laying on clean dressing--something the VN staff neglect completely. I fail to see what good it does to lay out a sterile field of dressings and materials, slap on some gloves and then layer on dressings over dirty skin, however that seems to fall in line with the doctor at the RFH who removed Les' staples saying it wasn't necessary to use a sterile probe each time he packed his wound as Les' body obviously isn't sterile 'nor is our home so why bother? Some things we are told are beyond believable if we weren't hearing and experiencing them for ourselves. 
  Les has had four difficult days and nights in which he articulated that he was "feeling rough" and "my gut hurts." We were up until nearly 2 a.m. Sunday the 16th of November as I tried in vain to figure out what was going on with Les, seeking more details on the kind of pain (sharp, burning, stinging, throbbing) and the intensity (on a scale of 1 to 10...). I broke down at 10 p.m. and called the After Hours number to be told they were very busy but would have a doctor call. At 11:30 the After Hours Care called back asking for details of Les' issue--never mind I had already provided it when I first called an hour and a half ago. I was assured then a doctor would attempt to visit but they could not guarantee when as they were very busy...
   Les could not get comfortable no matter what. After Hours Care called again at midnight to reassess the situation and assure me a doctor would be calling soon. Finally I insisted Les take a Tramadol and he drifted off to sleep sometime after 1:30 a.m. upon which I called After Hours Care and canceled the doctor's iminent house call. 
   In the morning Les seemed fine especially once his stoma bag filled up. He ate granola with milk and fresh strawberries for breakfast, and half a sandwich for lunch. By mid afternoon his pain was back again and it progressed apace as the evening carried on. Now the pains were moving up toward his right shoulder, just below the top of his surgical scar. A light went on in my head!
    As a veteran of eight surgeries I remember the awful, pressing pain of gas which is pumped into the body cavities to hold it open during surgery and afterward gets trapped in odd places as we convalesce. A patient is fortunate indeed if this gas is simply trapped in their gut. Fart and relief is instant! For those whose gas is trapped in the abdominal or chest cavity, it can move about like a will-o-the-wisp, settling in below one's shoulders, feeling like an elephant sitting on one's chest. 
   I spent the evening dosing Les with Lemonade (for Americans British Lemonade is carbonated water with lemon flavoring) to help him burp which relieved some of the pain. Again in the morning he was still uncomfortable until his intestines emptied. 
   Another light bulb flashed in my head...Les had finished a fourteen day course of broad spectrum anti-biotic a few days prior. Undoubtedly all the good digestive bacteria in his guts had been slaughtered by the power of the antibiotics. No wonder his gut ached! I suffered the same but instead of experiencing it after two weeks of treatment my gut shuts down in the first 24 hours of antibiotic use and digestion becomes impossible for me right away. It was unbearable for me and I felt instantly guilty for not anticipating this would occur to Les.  
   A quick trip to Tring for probiotics and a revised diet of homemade yogurt, whey and fruit smoothies, water, juice, and a pot of homemade chicken noodle soup with all the bits strained out resulting in a rich nourishing, flavorful broth, and we were into day two of "What in the World is ailing Les?" 
   Les called the Rothschild House Surgery where he is registered as a temporary patient and asked for a doctor to call him. Just before dinner time she did. Les explained what we thought was going on and how we were addressing the issues, asking if she thought we were on the right track. Dr. W. was mightily impressed with our common sense and said we were doing the right things. She made an appointment for Les on the following Friday because she wanted to meet him, get to know him, and examine Les to be sure all was well. 
   Les' general pain returned again that evening, just behind his L shaped incision and I dosed him with Tramadol every four hours. Pain eased, he slept well and woke feeling much better. The final light bulb went on in my head as I realized that Les being Les--he had stopped taking all pain meds the end of his first week home. He has a phobia of becoming addicted to drugs.
   Why?? I have no idea. Although Les was born in West London and was in his early twenties in the 1960's era of Drugs, Sex and Rock 'n' Roll--it was not his scene and he has never dropped anything trippier than an aspirin pharmaceutically speaking. He was thinking this time would be much like last year's surgical recovery when he came home two weeks after surgery and used no analgesics at all. 
   Les was underestimating his need for pain relief. His body was hitting a wall every afternoon when a day's worth of using those tender muscles in his chest
and abdomen to breathe and move all day took their toll. Our plan now requires Les to take one Tramadol starting at 3 p.m. every afternoon, as needed until he drops off to sleep in the late evening. 
   He actually walked the half mile round trip up to the bus stop in front of the BMW garage near Wharf Lane and back to the boat last weekend! Les is spending more time awake now and less time sleeping. We may have turned a corner....
  A definite bright spot for us was our meeting with Dr. W at the local Tring surgery. She agreed to take us both on as permanent patients and this means we can get out of Watford at last!! 
   Ten days have passed since Les began having issues which we've sorted. It was exactly a month ago today Les had liver surgery. We were told by the medical staff at the hospital--including Prof. D-- that it typically takes "several months" for a wound as deep as Les' to heal completely. I assume he did not use the term "a couple of months"which assumes two versus "several" which means more than a couple. 
   A nurse came in yesterday who hasn't been in to see Les for awhile on the rota. She was absolutely gobsmacked by how quickly he is healing. It has healed from the bottom up and no longer requires packing. A healthy scab has begun to form over part of the top. She commented, "You must be eating very good food." 
   Damn straight sister! It's the daily smoothies made with a banana, a cup of frozen blackberries, Pink Sun cross flow, micro-nutrient Whey Isolate Powder, an L-Glutamine pill ground with mortar and pestle into a powder and tipped in, a capsule of Solaray Mega B Stress Complex opened and added in, a scoop of Pecta Sol and orange juice to cover, designed to stop muscle wasting and provide an adequate amount of protein and cell energy for deep healing. It's the EmergenC sachet he takes daily providing him with 1000 mgs of vitamin C and all electrolytes in balance. It's the Ubiquinol gel caps, Woebynzyme tablets, and Milk Thistle capsules taken before bedtime; the probiotics and homemade yogurt. It's twenty four years of experience as a medicinal herbalist and nutritionist, a witch and wise woman. It's relentless love....
   Meanwhile I had an enlightening conversation with a gent here in the marina who told me about ten years ago he needed to have surgery on his right knee. He went to his GP for a referral to a surgeon, asking how long it would be until the surgery was scheduled. His GP replied, "Well we have to generate the referral letter and send it off to the surgeon whose office will respond at some point and get in touch with you in a couple of months to schedule an appointment. I reckon it will be three to five months minimum."  
  Once back home this bloke realized he had private insurance he had never used. He was self employed so he had taken out private health insurance but never needed it before. Calling his GP back He explained about the private insurance asking if it would make a difference. 
   "Oh absolutely," his GP replied. "I can generate a referral letter for you today. It will cost you £25.00 for it to be expedited by my office but you can pick it up this afternoon and hand deliver it to the specialist's office.
   Referral letter in hand, the bloke gave it the receptionist at the surgeon's office later the same day, who smiled happily at the news he had private insurance.  
   "We have an opening this afternoon at 4 p.m." Of course he took the appointment. The surgeon examined his knee and his x-rays carried in hand from his GP. 
   "You definitely need surgery. Your meniscus is deteriorating and surgery is the only answer." Turning to his desk calendar, the surgeon reviewed open times in his schedule for a couple of moments.
   "Today is Tuesday. I have an opening this Thursday. Will that work for you?" I walked back to our boat totally overwhelmed with despondency for the state of health care in Britain.
   The moral of this lesson? Brits who can afford private health insurance get quick and expert first world medical treatment right away--jumping the queues of NHS patients waiting, and waiting, and waiting for their care for which they paid dutifully out of every paycheck for years.
   Those who have paid into the State coffers of the NHS all their working lives and who cannot afford private Health insurance must rely on the over-burdened and increasingly ill--staffed second world health care system provided by the NHS and hope with fingers crossed they get their treatment in time and it is provided by someone who speaks something passing for English, and who is adequately trained and personally motivated to do their best rather than shrugging each case off as "just another day on the job."
    Perhaps if Les hadn't been forced to pay into the State coffers to fund the NHS he could have taken that money and paid for private insurance.

Wednesday, November 26, 2014

Update

Hi everyone
Just a quick update because I am so fortunate to have so many people showing concern.
I really have been rough the last 4/5 days but think that has been resolved.
Today seems to be a turning point although I have absolutely no energy but it will get better.
Just using the phone for this and will try to do a blog later in week.
Les
Thanks to you all

Wednesday, November 19, 2014

Un stapled but not un hinged

Well yesterday was an ordeal having to make the trip down to London and have the remaining 42 staples removed from the wound. Luckily the lovely Angela drove me down and back. Even the very small amount of effort it took for me to walk from the car up to the first floor completely whacked me out and by the time we got back I was wiped out completely and just slept till morning. This is for sure worst than the bowel cancer op.

The surgeon was not amused that the visiting nurses were not dressing the wound correctly. It seems the wound has to be kept open slightly by packing a small amount of gauze into the open wound to enable it to keep draining and not seal up yet. 
Anyway he showed me what to do so I could make sure the visiting nurses understood, all is now well with a nurse having visited today.
All the questions I asked the one I forgot was how does the wound heal if kept open to drain. I guess once it stops draining it can be left un packed. Any previous patients/medics out there any idea?

I will E mail the surgeons clinical assistant in the next few days for an answer but any thoughts from you would be interesting.

Another CT scan is to be done soon as a final check all is well within.

Anyway many many thanks to you all out there it is so appreciated be it just your thoughts via comments or your actions, a big thank you.
We are in Cow Roast marina and any body passing by is most welcome, just don`t ask me to dance....yet.......i`m working on it you can bet on that.

By the time this all comes to an end and we once again cruise the canals we will have had two years decent boating taken from us. Please remember none of us is immortal so if you never use the boat in winter or perhaps always fancied that particular canal do it now, who knows what is around the corner.
I will get fit and will continue doing what I love but I do realise it could have been so different. I have been lucky.

Happy boating everyone.

Sunday, November 16, 2014

Moored up for the foreseeable future

We had the intention of getting back to the mooring outside Cow Roast marina that we occupied when I had the bowel cancer surgery last year. Jaq did walk up to check the mooring and perhaps find out if the boats would be vacating soon but had no luck finding any one on board.

The pound we were in had a leakage problem bad enough that CRT had banned the locks being used 4pm through till 8am the following day. It had no affect as a cruiser went through about 7pm and ended up with it`s bow fender stuck on the gate. This came to light when a woman banged on the boat some hour or so into the saga asking for a little bit of muscle to help shift the boat. Just lifting my top soon sent her away apologising. They did eventually get moving.

So Jaq was back and forth closing gates to the rear of us and letting water in ahead otherwise we were at a terrific angle as the boat settled on the bottom. As soon as a boat had passed us we knew within 30 minuets that they had left the gate open allowing the water to leak through the top gates coupled with the mysterious leak in the canal itself soon bottomed the boat.
So the decision was made to go into Cow Roast Marina for at the moment an undetermined period of time. We have all services needed, steady water level, good access for nurses to visit and Mr. Tesco can deliver to the back door of the boat.

We have had already several visitors from the great bunch we made friends with last year. Robert popped in, Angela is due tomorrow and Mike turned up this morning with the Sunday paper.

I have an appointment for Tuesday at the Royal Free hospital to have the remaining 42 staples out and to see what happens about the open wound that still has a small amount draining from it.

As for me, well I have felt better each day since coming out of hospital and have NO pain just overwhelming tiredness that is soon solved by closing my eyes on the world.

I have just read through all the comments again having only glanced via the phone over the last week or so.
My one answer to you all is Thank you all so much.

Wednesday, November 12, 2014

Back home

Ok "Sir" is back, a little lighter in the Liver dept but having to remove only 10% rather than the expected 30% is in itself a bonus. Hopefully now Mr. C has been finally sent on his way but best not to take anything for granted. All we can do is cut out some of the crap food millions of us put in our mouths and hope my immune system can be strengthened to help keep evil at bay. At least I still have one. The chap in the bed opposite had 40% of his liver removed and was put in a comatose state for 9 days in intensive care after his surgery because the chemo had wiped out his immune system.


The surgeon tells me the 50 metal clips along the wound have nothing to do with the Stars and Stripes.
Neat, clean and dry it all looked good. The pictures I took about 3 days post surgery when they were taking the drain out. Four days later I awoke to a high temperature and the wound near B red and hot. Just to make clear my belly button is just under the A.
My gripes are; Why did it take 3 days before a different doctor opened the curtain and from the bottom of the bed told me I had a wound infection. Secondly after putting me on anti biotics and opening the wound (8 clips removed) did they send me home the same day. They could at least have let me stay even only for the first dressing change and to check the effect the antibiotics were having.
Anyway the district nurse came by the boat and changed the dressing and repacked the open wound with alginate based on sea weed. I was pleased to observe that very little other than that absorbed by the dressing came out of what is a very deep incision. When the wound was opened to drain at the hospital I would seriously estimate the liquid sludge to be of about a half pint. No wonder it was Red and painful with the body working overtime to get it all out.
Although as I say I would rather  not be here today at least with the drain working and an adjustment here and there with the pain meds Jaq and I can between us muddle on. Jaq has bad knee joint problems and needs to take it easy but of course she is toddling around after me. I do love her for that.

Monday, November 10, 2014

The Universe Tries My Patience!!!

"Patience is the ability to idle your motor when you feel like stripping your gears." ~Barbara Johnson, American literary critic
Thank you Robert!!
   I woke to a glorious morning with blue skies and golden sunshine. Jules and Richard on Jules Fuel were moored up behind us, on their way down the cut. They filled NB Valerie up with diesel and hoiked a couple bags of coal on the roof while I was gone to London yesterday to visit Les. I settled our bill, and waited for our friend and fellow boater Robert Rogers of WB Wind in the Willows to come along. We were going cruising together, me steering and Robert locking so I could move the boat up near Cow Roast for Les' imminent home coming. 
Our bow, left, the water point, and the offending boat.

   I needed to top up our tank with water but there was a boat moored on the water point--all night and it showed no signs of moving! Robert steered NB Valerie across the canal since I could not jump off with a rope--the other boat took up the space needed and the bollard as well.
   While waiting for the tank to fill I took a closer look at the boat moored up on the service point and found a handwritten note taped to the inside of the cratch cover of NB Annie Too, which said:
Dear Boaters, We apologize to our proximity to the water hole. It's too difficult to navigate back up the cut without bothering the fishermen. We will be gone when they're headed here also. Sorry again, Matt, Tiphaine & Basil
The note from Matt, Tiphaine & Basil
    God forbid you should inconvenience some fishermen who will spend mere hours camped out on the cut, but please do make it bloody difficult for boaters to get into the service point for an essential like water--while you are gone for days??? Weeks??? Go back to whatever marina you came out of and stay there until you know the regulations about mooring on water points and you learn to have some consideration for boaters--of which you are obviously not (considerate or a boater).
   While I fumed, my phone rang. It was Les, calling to say he was greeted by a nurse who told him he was going home today. "I don't think so," he said as he attempted to explain that home was a boat and not some house he could pull up to in a Taxi. A short time later a doctor came in to take a look at  him and finally realized what Les and I have been saying for the past three days is in fact true...Les has an infection in his incision. 
   There is a reason why he has been running a fever for the past 72 hours. I thought the incision looked swollen with a red margin that seemed to be reaching outward. We were assured by a nurse two days ago that this was normal. Les has had the same junior doctor looking at his incision on rounds for the past three days who told Les all is fine and it's time to go home. 
   A different junior doctor this morning didn't like the look of Les' incision. It is hot to the touch and dimpling under the staples. Junior Doc prescribed a broad spectrum antibiotic and said it may be necessary to pop a couple of staples to let the incision breathe...but still Les can come home tomorrow! Here's your hat what's your hurry...it took a month to get Les a bed in the RFH and they have been giving him the bum's rush since last Wednesday--unbelievable!!
  Meanwhile Robert and I cruised off up the cut, headed for Cow Roast. Coming out of Gas lock 2 we noticed the pound was low. Ahead at Gas Lock 1 a boat was waiting to come down. The lock was in my favor so I took NB Valerie in and as we rose the bloke on the other boat struggled to keep his boat in the center of the canal, the muddy bottom sucking him towards the towpath while he pushed off the bank with a boat pole. He said the pound above was really low and warned me to stay in the middle. 
   Robert walked up to Bushes lock to let some water down. I figured if I stayed in the middle of the canal I would be fine, however there was so little water in the pound that I was basically cruising through mud! I could not get up any speed as the tiller pushed through thick glop and coming around a curve I found myself quickly aground.
When I say low--I mean low!!
   Thanks to Les' fine teaching skills, I remembered to slow down and reverse gently which did the trick. A short while later a slogged up to the lock and the boat sluggishly slid in the open gate. I was truly thankful for Robert's company. I had considered single handing it up to Cow Roast which I could have done--slowly--in good circumstances but not with the pounds so low. 
   Robert follows a web page called All Things Berko and he showed me a picture posted two hours previously of the pound between The Rising Sun and the Boat pubs in Berkhamsted. The text suggested "someone pulled the canal plug," possibly due to a need to dredge the canal for evidence regarding a murder which took place there last June. 
   As we cruised up to Dudswell Lock 47 a notice by Canal & River Trust said it all. Usually there is a sign from CRT on this lock asking folks to shut the gates but leave a lower gate paddle up to facilitate the flow of water. Not today!
   Apparently there is leak somewhere and the cut is losing water between Tring Summit and the locks lower down through Northchurch and Berkhamsted. Navigation through Dudswell locks is restricted now and no traffic is allowed from 4 p.m. to 8 a.m. in order to save water. 
  We moored up by the donkeys (boaters who know the area know exactly where we are), and after a much needed cup of tea and some Angel Bars Robert headed off back home.
   I finished washing several loads of curtains, dinette cushion covers, throw pillow covers, and got down to some basic wall scrubbing and cleaning to prepare for Les' home coming, all the while fretting about it.
   Yes, I want him to come home, but I don't want a repeat of last year, with district nurses visiting every day, cleansing his incision with sterile water, covering it with Dermateg waterproof sealed surgical pads, and reassuring me that the wet, gooey look of Les' incision was "normal"--just exudate--an apparent new trend in British nursing--according to a research paper on the difference between British and American Nursing by one of my nursing students.
   I was always taught a cut, sore, scrape, or incision should be kept clean and dry. To leave it wet invites infection; covering it over and restricting air flow also invites infection by anaerobic bacteria. As someone with eight major surgeries under my belt I know a thing or two about what to look for and I knew what I was seeing wasn't right. Nonetheless the nurses were happy and they completely missed what was right in front of their noses--his wound was infected and he developed Sepsis and nearly died. 
   I don't want a repeat of this situation and I don't want the responsibility--because it's not mine to bear. Les developed this in hospital and he should remain there through the end of this week until the medical professionals are clear the antibiotics are working and the infection is healing. I am not a nurse. I am a herbalist and a healer but I know my limits. 
   I remembered in late afternoon that I was given the phone number of Professor Davidson's nurse assistant. I called and shared my concerns, to be told that if indeed Les had contracted an infection (she hadn't been up to see Les today), then the best place for him is at home because hospitals breed too many bacteria and a lot of resistant strains. It would be best for Les to come home and have a district nurse come in every day and check his wound. 
   I explained what happened last time and replied, "So Les would be sent home to the care of the nurses who failed to recognize an infection in his last surgical incision and also failed to spot the signs of Sepsis." The nurse assistant said she would go up and see Les right away and call me back. 
   Les called about thirty minutes later to say she had been up to visit, and agreed there was an infection (how many medical staff does it take??). She touched it and the incision is hot. Apparently she agreed Les should stay in hospital one more night and be reappraised for release in the morning. 
  I received a call from her several hours later in which I was basically told the same thing but in which she reiterated that the best place for Les to recover is at home and he should be able to leave tomorrow.
  I reiterated that I was not comfortable with that and I wanted Les to stay in hospital until we knew for sure that the antibiotics were working. She told me I could call her any time with my concerns. I asked if she had received my email from last Friday. She replied, "No." So I've sent it again. 
It just never ends....

Sunday, November 09, 2014

Patient and Caregiver Update

   Les continues to feel a little bit better each day although his ribs on the right side hurt considerably. Why is that you might ask? Liver resection requires the ribs be lifted or spread out of the way.
   The torture device surgical instrument used is called a Finochietto Retractor--stainless steel with rack and pinion steering thumb screws to hold it in place. Needless to say Les' ribs are bruised and sore.
   When I arrived on Wednesday he was clutching his side in agony--face pinched and pale, lips trembling. Dear Sir had fallen asleep while waiting for me to arrive with his lunch and a ball of phlegm in his chest decided to cough itself up while he slept. It was an autonomic response for which Les was not prepared which woke him with searing pain. Usually when he is going to cough he tucks a rolled up blanket or a pillow over his surgical site and clutches it to ease the pain. A few minutes later a nurse arrived with extra liquid pain medicine which sorted Les out after about five minutes.
   The care provided by the staff of the Royal Free Hospital has been above and beyond reproach. The service provided there is first class--first world and it is the standard in my opinion which every British citizen should receive at any and all NHS facilities. 
   Les said on Wednesday that the surgical staff who visited him on rounds were pleased with his recovery and talking about sending him home by the weekend. I told Les No!! Not a good idea. It took us a month to get him a bed in the RFH and he needs to take as much time as is necessary and comfortable to be sure he is well enough to come home to the boat. To that end, On Friday afternoon I emailed Professor Davidson's assistant the following: 

I am writing to express some concerns I have regarding my husband Les Biggs who is on Ward 9 West recovering from a liver resection completed Monday last (November 3, 2014). I would appreciate it if you would kindly pass my concerns on to Professor Davidson and his team.

I've been in to visit my husband every day for 4 hours at a time. I've been bringing him homemade chicken noodle soup, fresh homemade yogurt with strawberries, and banana-blackberry smoothies with cross flow micro-nutrient whey powder blended in, which stops muscle wasting.

On Wednesday Les told me when I arrived at 2 p.m. that Professor Davidson mentioned Les possibly coming home on the weekend as he was progressing quite well. I have concerns about this time-line for discharge from hospital. Wednesday when I arrived, I found Les pale, lips trembling, and in a great deal of pain. He had fallen asleep waiting for my arrival and in his sleep a ball of phlegm irritated his chest and he automatically had a very deep cough--for which he was not prepared at all. The intensity of the pain knocked Les for six and exhausted him. (The nurses have been terrific about helping Les manage his pain--when he remember to ask for pain meds, and Sheila--the Enhanced Recovery nurse--has been absolutely wonderful and attentive to my husband's needs).

After some good food, and an afternoon of light rest I asked him if he felt like taking a small walk. Les said yes and I helped him to walk from his bed and out the corridor about halfway between his ward room and the one next door. We turned around and walked back to his bed and he was spent. I suggested that perhaps he might want to take shorter walks more often--say walking from the bed to the doorway of his ward room and back three times a day to start. Les knows that the sooner he walks, the sooner he walks out of the hospital and he is committed to doing everything he can to get on his feet and get better. I believe though that he may be overdoing it and pushing himself too hard in the hopes of coming home right away. Yesterday when I arrived Les said that he had gone for a walk with Sheila, up the corridor almost to the nurses station and then could not muster the strength to walk back. Quick thinking by Sheila kept Les from falling and together they finally did manage to get him back to bed.

Doctors do their patient visitation rounds in the early morning when most patients have had a night's rest and their energy levels are the highest. By the time I arrive at 2 p.m. each day I see a patient whose energy has peaked and is on the downturn which offers a very realistic idea of what my husband is capable of coping with at present.

I do not believe it is in Les' best interest to be discharged before Tuesday at the earliest. There is also one other issue which I ask Professor Davidson to take into consideration when looking ahead to a discharge date for my husband: we live on a boat not in a house. This means we will not be pulling into the driveway, helping Les to take 6-8 steps from the car to the house and settling him in.

Les will have to walk from the car out to the towpath and down the muddy, slippery, uneven towpath for a distance of 75-500 feet depending on where we are moored, in order to reach our boat; it is then a step off the towpath and over the bow of 20 inches width and a drop from the towpath to the bow deck of nearly three feet on a boat that is at present in high winds, moving about, rocking and not stock still.

We are currently moored up in Berkhamsted which provides me with easy access to the train in order to visit Les daily, however I need to move our 18 ton narrow boat up eight locks to Cow roast (Tring) in order to moor for any length of time over 14 days and to provide Les with a quiet, dark, and peaceful atmosphere surrounded by other boaters who will assist us in the months ahead. I also need to take in consideration the best location for me to access water, rubbish and other facilities (the boat must be moved twice a week to get water and empty the trash).

We heat our floating home with a solid fuel stove. In order to keep the boat and Les warm and comfortable this means the stove must be attended to constantly throughout the day--the ashes must be swept out, bags of wood must be brought in and a bucket of coal--every day. A bag of coal lasts about four days and then a new 50 pound bag must be hoisted off the roof and into the well deck on the bow. Les usually does this but I will be doing it for the next three months. I will in short be doing all my activities of daily living aboard the boat and his too, as well as taking care of him so he doesn't over due things, managing his exercise so he continues to regain his strength and preparing wholesome food etc. etc. ..as we live on a boat with only 110 feet of actual living space it is key that I am as organized as possible and our home is ready for Les as well as Les being ready to come home.

To this end I respectfully ask that Les not be discharged before Tuesday November 11th and that I am given 48 hours notice of his discharge date so I can move the boat and ensure things are prepared for Les' arrival. Please let me know if you have any questions or concerns about my request. I wish to offer my humble thanks to everyone who has provided superlative care for my best beloved.
   This morning Les phoned at 7:30 a.m. to say he has a temperature and some pain in his side.  He phoned again at 9 a.m to tell me staff were at his bedside with vials testing his blood. He asked them if they were looking for Sepsis. The woman said, "Yes. How do you know about Sepsis?"
   "I had it after my last operation and my wife recognized the symptoms."
   "Is your wife a doctor?"
   "No, she works for a university and is trained to do research. She researched the symptoms and knew what to look for." As it turns out Les does have a temperature but he does not have Sepsis--thank The Goddess. The best place for Les to be right now is right where he is--receiving excellent care and being watched carefully and resting until he is actually well enough to return home to my care. 
  And what about moi? Instead of beginning this post with a quote I've chosen to include this 1984 U.S. Dunkin Donut commercial because it encapsulates exactly how I feel about this past week and the one to come. My daughters know the phrase "Is it time to make the donuts? It's time to make the donuts," has a special resonance in our family!
   I feel like I've met myself coming and going on the train in to Euston. Everything else is a flash in between until I get to the RFH and Les' bedside and then back again to collapse in my reclining chair on the boat every evening.
   Life has been complicated by my putting my S-I (Sacro-Iliac) out on my right side last Tuesday afternoon. The odd thing about this injury is that one does not automatically feel it in the lower back/hop area--it is felt first in the knees, as one leg is longer than the other by about a quarter of an inch. All the muscles and ligaments at the knees torque out of place to accommodate walking and it feels like thirty inch splinters are being driven through my knees and calves. Searing pains shot down my legs as nerves are pinched.
   By Wednesday every step was agony and by Friday I could barely walk and I was completely exhausted from the pain and an inability to sleep as my S-I joint popped in and out of place while I rolled around in bed all night. 
   Fortunately a blog reader and dear friend Anonymous A. (Angela) came to my aid. Angela lives in Berko and happily picked up a few groceries for me as well as a brochure for a chiropractor a stone's throw from the canal.
   My deep thanks to Dr. Gary Kirwin of Naturality Chiropractic for seeing me on such short notice and sorting me out. He adjusted me with firm, gentle care while talking with great enthusiasm about narrow boats!  His practice is located In Berko on New Road--in between the Cook! gourmet food shop and the Waitrose parking lot entrance. I can see the building's chimney from our mooring on the cut. It will take a few days for my knees to stop aching.
© Peter and Susan, NB Dreamer
   In the meantime I am making tidbits to take into Les each day to supplement the nasty hospital food which has had all the nutrients and taste steamed out of it.
   I am also quite proud of myself for moving the boat yesterday to fill up with water. I forgot to put the TV antenna down but still I managed to just slot the boat in at the water point without becoming entangled in the Whomping Willow tree branches just waiting to ensnare anything on a boat roof. 
   After filling up with water and dumping the rubbish I reversed back across the canal to our mooring spot, deftly missing all other moored boats and a dutch barge which cruised into sight suddenly from behind the aforementioned mass of will branches much to our mutual surprise! I didn't reverse as deftly as Les does but no children, animals, or boats were harmed in the process so it's all good!
   Finally many thanks to Ken and Sue Deveson for visiting Les in hospital and for their moral support, offers of help, and ongoing friendship; to Maffi who stopped one evening on his Autumn Progression to say hello and have dinner with me; to Angela for running errands and practical support. Many kind thanks as well to everyone else who has called, texted, emailed and commented on this blog to offer support, encouragement and assistance. 

Wednesday, November 05, 2014

Sit by your beds

Taken Wednesday morning. Out of bed 3 days running.

Tuesday, November 04, 2014

In Sunshine and in Shadow: Post-op Update

"One cannot enjoy sunshine and light without also accepting and embracing shadows. There cannot be the one without the other--they are equal halves of a whole." ~Anon

   We arrived at the Royal Free Hospital yesterday morning at seven a.m., and reported to the same place as last time: Day Surgery and Surgical Admittance, to the same hostile, unprofessional woman as before, staffing the desk, and Les proceeded to check in again. The same pandelerium reigned with a sloppy queue of day surgery patients mixed in with folks like Les waiting to be admitted to hospital.
   About ten minutes later a nurse with a very heavy foreign accent called what could have been "Mr. Biggs" or any of twenty variants on a theme. No one responded so Les stepped up and said, "I am Mr. Biggs?" Yes, yes, of course, come this way... and off we went to an exam room for a Deja Vu ride into the uncertainties of the British NHS. 
  There was still no guarantee of a bed in the ITU (Intensive Therapy Unit) for Les! We were told however that we would know one way or the other by eight a.m. The anesthetist was a lovely young Eastern Indian woman with impeccable English pronunciation--thank The Goddess. She went into great detail on what Les could expect which was very helpful. 
   One of the surgeons on Professor Davidson's team came in and introduced himself. He explained that the scans had indicated two lesions on Les' liver but during the ensuing weeks since the scan was taken things could have changed. While they were planning to take 30% of Les' liver, they might need to take more and there was a possibility--although he thought it slight-- that they could go in and find "there is nothing we can do for you, in which case we will stitch you back up without removing anything." Chilling words indeed for me to consider as I pondered in helpless anger, the weeks we've lost to the progress of this disease in the face of the NHS' inability to cope with a level of efficient care in our case.
   Meanwhile a shy young woman with a strong Polish accent who we also found difficult to understand, came to take five vials of blood. Les has a deep phobia of needles. He is fine once it is in but the process almost undoes him every time. 
   This time the technician could not seem to find a vein and she poked him three times, digging around with the needle, until finally she managed to draw blood.
   We sure wished Sparky had been with us. My youngest daughter is a trained and experienced Certified Nursing Assistant/Phlebotomist and she can tell you--some technicians have the touch and some don't. Sparkala has the touch and can seamlessly insert a needle and draw blood from a turnip. This young woman working on Les was too timid and she didn't have the touch--at all. I thought we were going to have to hold Les down at one point. All the color leached out of his face and he went pasty white. I was worried he might faint.
   We were told to go back out in the hallway and sit until someone called us. Back we went  to watch the scene of hyper manic medical business unfolding and within five minutes the nurse came and got us. There was a bed and Les needed to strip down, put on a gown, paper panties that resemble nothing so much as one of those paper food service worker's caps, and a pair of navy Ted hose to prevent blood clots. 
   We were unceremoniously shown to a locker room where the items were shoved into my hands and the nurse turned and left. As I was tying up the back of his gown, she returned and stepped in front of me to take over the gown tying, then she urged him to get into his stockings.
   Now anyone who has ever worn Ted Hose knows they are super tight and harder to put on than women's pantyhose--something akin to attempting to slip a membrane thin finger protector over an engorged erection. This process is made more difficult yet for Les, whose stoma bag is in his way when he bends down. We tried to explain this to the nurse while he struggled to get a leg up and work one sock on. The nurse urged Les to get a move on it in a staccato burst of words completely lacking in any meaning for us (although I am sure she was confident she was speaking English) until she could see Les actually struggling and realized he needed help.  
   Stockings on, we were herded back out in the hallway where medical staff were calling out patients names for day surgery, family members trailing along behind their loved ones as traffic bottle necked in the narrow hallway near the nurse's station. Our nurse grabbed me by the arm and led me off to the end of the hallway to select a large locker for Les' belongings. Items secured, she took the locker key, marched off to the nurse's station and put it in an envelope with Les' name on it, then hurried off to attend to other things. Meanwhile Les was still standing in the drafty hallway as a milling throng of sick people and their families swirled past him accompanied by their medical staff. 
  We wanted to know how I was supposed to collect Les' things after his surgery. Les asked another nurse at the station. She replied in broken English with a heavy Polish accent which we had to hunker down and attend to every syllable in order to understand. She hadn't grasped Les' initial questions either and she assumed he was a Day surgery patient so her instructions were meaningless. 
   Our nurse returned to say it was time for Les to come along and follow her. We wound down the hallway and stood across from the per-op doors. The frenzy and seeming disorganization coupled with a round of foreign accents that were hard to follow, and the fact that my husband had been standing in the hallway in his flapping nightgown for fifteen minutes did not inspire confidence in me at all.
   Finally a pre-op nurse came out to collect Les. I took his face in my hands and kissed him, saying, "Remember--I am waiting here for you, so you come back to me do you hear me--you come back to me." I kissed him again with tears in my eyes and they walked through the pre-op doors at 8:45 a.m.
   I was told someone would call me to offer an update on his status near the end of surgery. Both the nurse and the anesthetist had written down my phone number. I was left at loose ends as the morning passed, sitting first in the hallway amongst the throngs of day surgery patients and their loved ones. 
   I took a brief walk at ten a.m. to the Belsize Park Underground station five minutes away, to redeem an extra Oyster card and get our money back. I stopped in the hospital canteen run by Marks & Spencer for a breakfast sandwich and coffee which were terrible and totally unappealing. The latte was weak as rainwater despite my having asked--yet another person with a thick foreign accent who I found as hard to follow as she found mine--for a triple shot latte with double caramel flavoring. It took two other employees to explain to her what I had actually asked for and she had to cancel my order which she had interpreted incorrectly and run it again.
   Finally my latte arrived with a breakfast sandwich that had been nuked to death. One half was hard as concrete and the cheese had become molten lava, flowing out all over everything. I took two sips and one bite and threw it all in the garbage.
   Back up on the Day Surgery floor I sought out a quiet place to rest--four hours of sleep and a rising time of five a.m. meant I was exhausted. I discovered the Day surgery patient lounge we had waited in on October 8th. It had large, overstuffed recliner chairs on wheels all around the walls with a bank of windows opening up to Hampstead Heath in the distance. I settled in and closed my eyes, listening to the sweep of voices in the room. 
   I have always been good a identifying accents. It comes from having had a HAM radio operator for a father. I used to sit on his lap as a little girl back in the early 1960's and talk with other HAM operators all over the world. I also had a Norwegian grandfather and a Welsh grandmother so I grew up in a world peopled by the music of foreign accents.
   Around me now, I heard Albanian, Italian, Spanish, Chinese, and Farsi. Each language was spoken by a day surgery patient accompanied by a family member who acted as an interpreter and signed medical paperwork to this effect. I am a foreigner in a foreign land and although is it England I cannot count on the national language being spoken clearly enough for me--whose ears have always been sensitive to the nuances of a foreign accent--to understand or indeed for my flat American accent to be understood in return.
  I stood and looked for the time. I had become a clock watcher now as the hours crawled by. The surgeon had said Les might be in the theatre for as little as two hours or as many as six depending on what they found. By 1:45 I could sit no longer. For me, the passing hours did not bode well. I went to the Day Surgery nurse's station and asked if someone could update me on my husband's status--was he still in surgery? The nurse called around and discovered that Les' surgery was just finishing up and I should go up to the 4th floor and ask for bed nineteen. 
   Imagine my surprise when I arrived to the ITU floor to discover a beautiful--and empty--waiting room with over 40 chairs and two vending machines. I could have waited up there in quiet and comfort if only someone had directed me hours ago. There was no one at the reception desk but the notes taped to the glass indicated that bed 19 was in the south wing. After ten minutes search I found it and then stood and read the lengthy directions on how to use the phone to call the bed number. Calling bed 19 a nurse picked up and I explained who I was. She asked me to hold please, and came back a few minutes later to tell me my husband was still in surgery which was just finishing up and he would be in bed 33 when he came in to the ITU. I should wait and someone would find me. 
   Back out in the ITU waiting room I sat with eyes closed for thirty minutes until a door swished open and one of Les' surgical team came over to me with his hand outstretched. He shook my hand, and said, "Your husband is in ITU now. Everything went very well. We found the two small lesions and removed them with about 10% of his liver. Everything we took had very clear margins so that's good. We found a third very small lesion which we also took. We don't know if it is cancer--it looked to be a calcification--but we took it and it has been sent off to pathology."
   I asked about Les' gall bladder and he told me they didn't need to take it. I started to say, "Thank you Mr. Kumar--" he clutched my hand warmly and said with a smile, "Call me Satch--everyone does. Wait about another twenty minutes and you can go in to your husband. He's doing really well."
   It was clear this young surgeon was feeling very happy at the outcome of Les' surgery--"Satch" was relaxed, happy and had a spring in his step. His demeanor would have been quite different if there had been a less than desirable outcome. 
   I spent the time texting friends and relatives with a brief update. I offer my heartfelt thanks to everyone who kept in touch with me and who kept Les and I in thoughts, prayers and meditation throughout the day. 
  I reported to the South wing and rang bed 33. The nurse answered and I explained I was Les' Bigg's wife and asked to be admitted. The door clicked softly and in I went. 
   Just around the corner and there he was--my Best Beloved!! One nurse was assigned to him and she was all business, ordering me to put on a plastic apron. I washed up to my elbows and stumbled through unfolding the plastic bag apron and getting it on.
   Still groggy and barely out of surgery, Les felt me lay my hand on his arm. He opened bleary eyes in slits and stared intently at me as though I were an alien with three heads, then slipped back into sleep again. I stood by his bedside while his nurse checked and re-checked his paperwork, the surgeon's instructions, and keenly monitored the eight or so machines which were clicking and beeping, following Les' blood pressure, oxygen level, breathing, heart rate and medicine dosages.
   Slowly, slowly Les came back to me, as his anesthesia began to wear off.  He had IV cannula's in both hands, a urinary catheter, and a large tube sticking out of his neck on the left side, to which were attached a snaking half dozen thin plastic tubes carrying medicine and other life sustaining things directly into Les' carotid artery.  A large oxygen mask was strapped to his face.
   As the hours passed I got to know his brilliant nurse Cynthia, who speaks with excellent English diction and has been an ITU nurse for fifteen years. She was right on top of everything and stayed there, watching and listening intently as Les came 'round and began to use sign language to indicate his pain level was a nine and his mouth was too dry. 
  Cynthia gave Les some pain medication by IV and squirted drops of water into his mouth. She got his medicine on demand box set up so all he had to do was push a button every five minutes. He struggled to sit up and could not find a comfortable position. Cynthia rearranged him a half dozen times at Les' request, in a gentle, efficient manner. I warned her Les has a very low pain threshold and as he comes 'round he will begin asking a thousand questions--which he did. She told me he thrashed around a lot when he first arrived from the operating theatre.
   I knew he was fine when he began to negotiate for release from the oxygen mask. He hated it and it made him very uncomfortable. Cynthia told Les he needed to keep it on for 24 hours. Les bargained for an oxygen cannula in his nose instead and won. As she slipped the plastic cannula hose around his ears to hold it in place, I said, "Darling its a very good thing you've got the ears to support this hose." Les came straight back with, "It's mean to take the piss out of a new surgery patient!"
   We laughed and Cynthia relaxed as she watched Les and I banter with one another.
   "I can tell you to have fun with each other don't you?" 
   "Yes, we carry on like this every day, laughing and having a good time together."
   Within three hours of coming back from surgery Les was alert, happy and raring to go. He too was over the moon at the surgeon's pronouncement about his surgery outcome. Cynthia took me aside and said, "It's such a pleasure to have a patient who is alert, happy and ready to get well. Most of our patients in ITU are very ill and not very happy."
By the time I left at six p.m. Les had eaten a pot of yogurt, drank some water and was attempting to cajole Cynthia into letting him get out of bed!! I told her to be careful or he would have her out in the garden doing Pancake races in a few minutes. Emotionally threadbare and exhausted, I left for home, knowing Dear Sir was in competent, caring, professional hands.
   I managed to catch the correct bus to Euston Station, eat a bite of dinner, spot the train I needed, get on the correct train despite the thronging hoard of travelers heading out of London, and I was met at the other end by Robert from WB Wind in the Willows, who took my bags and walked me home though the dark. Thank you Robert!!
   I am off to visit Les now and I should not be at all surprised to find him leading Step-dancing classes for the ITU staff!