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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.

12 comments:

life afloat on nb tickety boo said...

Jaqueline you are an absolute marvel!! Les you are amazing to have come through so well, considering some of the abysmal treatment you have been getting on our NHS :( Thank heavens for Jaquelines medicinal knowledge!
The love that flows back and forth between you two, I am sure will conquer anything. You are an awesome couple! Big hugs to you both x

Maffi said...

Hi Jaq Jeez you guys are having a time of it. Keep fighting and when it all done and dusted write a book about it.

Boatwif said...

More boxes of EmergenC will be airlifted to the UK on Thursday, arriving Friday. We'll give you a call re. delivery arrangements once we're back on UK soil... Do take care, both of you. Longing to see you again soon.
Love and hugs,
Sue and Ken, nb Cleddau

Tom and Jan said...

Nothing is more frustrating than an un-necessary battle. It seems to me that public health (ie the NHS) might be described as "caring incompetence".

However, despite alll the un-necessary suffering you have had the determination and resolve to come through. Well done to you both!

Paul and Elaine said...

I'm so sorry that you are having such a battle. I would just like to say that Elaine's NHS treatment for ovarian cancer has been absolutely first class, as has the follow up consults.
A huge help in Elaine's recovery is knowing that the treatment is not going to send you bankrupt as is the case in the USA.
All the best.
Paul

Carol said...

Hi Jaq, Les is a lucky man, it seems fortuitous that he met you doesn’t it. Keep fighting his corner kiddo, we will see you sometime in the New Year. George xx

Jaqueline Biggs said...

Hi Debbie,
Love takes down many an unseen path on our way through life--as you well know. This is one of them. Les and I are a good team. Thanks for keeping up with us through thick and thin!
JaqXX

Jaqueline Biggs said...

Good idea Maffi!
JaqXX

Jaqueline Biggs said...

Sue and Ken,
It will truly wonderful to see you both again soon and hear all about "back home!" Many thanks indeed for the EmergenC--it is miraculous stuff!!
Love and Hugs,
JaqXX

Jaqueline Biggs said...

Tom you hit the nail on the head--"caring incompetence." It is the unnecessary part that makes we want to go postal as we say Stateside. Many thanks for your and Jan's phone calls and support.
JaqXX

Jaqueline Biggs said...

Yes Paul, you did mention this before on your blog--and ours, last year in October when we first started through our NHS experiences.

As an American who has undergone bankruptcy for a child's medical expenses and who has not always been able to afford medical insurance I can state unequivocally I would rather face bankruptcy then incompetent medical care which endangers my life and seriously hampers my recovery.

I can assure you Les would not have survived last year's VN care to undergo this round. Sepsis would have killed him right under their noses--and it nearly did.

At least in America I know I am receiving first world medical care worth in my personal opinion--every penny I have to pay for it. I've had eight medically necessary surgeries in the States and been on both ends of the health care continuum: too poor to pay anything, and working at a State job with great benefits which covered nearly everything. Either way the most I've ever had to pay for myself a is $3000.00 deductible toward a cancer staging surgery with a hospital bill of $87,000.00.

Good medical care and who and how it is paid for is such a complex issue with so many strings attached. Making employers like Walmart provide decent medical insurance coverage for all their workers would be a huge start.

I did wonder what kind of cancer Elaine was fighting. As I recall it was never explicitly stated on your blog previously. I too am an ovarian cancer survivor. Two rounds--Stage 1A, treated with surgery, after which I was told I was cured and could get on with my life, and Stage III metastasized which I addressed with an alternative two year treatment leaving me free of cancer now for 8 years and counting according to a surgical biopsy and regular scans.

I am glad you and Elaine feel you received the best possible free medical care available here in Britain. Nevertheless her good care is no excuse for the less than stellar care Les and other Brits have received.

I hope Elaine continues from strength to strength recovering well and living a long, healthy life.
Jaqueline

Jaqueline Biggs said...

Carol,
I've always maintained that Val's spirit brought Les and me together. She knew what--and who he needed and helped from the other side to make it happen.

We are so blessed to have one another and we will be even more blessed when your large barge shows up at cow Roast and we can celebrate together!
Love JaqXX

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs