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Monday, October 20, 2014

A Hard Day's Night

"The sudden disappointment of a hope leaves a scar which the ultimate fulfillment of that hope never entirely removes." ~Thomas Hardy, British writer

   Here we go again, five steps forward and nine steps back. It was with guarded optimism in my bosom that I helped Les pack our bag and get ready for our overnight stay in London last night, prior to checking Les in at the Royal Free Hospital this morning for surgery to remove two cancerous lesions and thirty percent of his liver. 

   (Most folks who follow our blog are well aware of the terrible debacle we both faced this very week last year when Les was undergoing surgery and recovery for bowel cancer. It was my first experience with the NHS and it left me with a bitter taste that hasn't disappeared. Those who wish to do so may read or re-visit those hellish posts here and here.) 
    The Premier Inn is located behind and just across the street from the back of the Royal Free Hospital. I guess I should have recognized Sod's law in action at the check-in desk when we gave the girl the reservation number provided by staff at the RFH, and she brightly chirped, "Michael Biggs?" Correct reservation number--wrong first name. 
   We dropped our bags in the room and headed off for a walk around the neighborhood and up on Hampstead Heath, scoping out restaurants along the way which we might consider for dinner later. After a bracing walk through Autumn leafy lined lanes, and a good stroll across the Heath, we settled on dinner at the hotel restaurant.
   Although it was my birthday, I was too tired to give much thought to celebrations. Not only did I have Les' impending surgery on my mind, but a phone call from the States earlier in the day informed me that a best beloved very close to me has also been diagnosed with cancer. I am back to sleeping only four hours a night and the dark rings under my eyes are testament to that old survival mode which says life is once more a struggle to endure and sleep only comes with exhaustion. 
   After dinner we went back to our room and indulged in deep, hot, sensuous....baths (you thought I was going to say sex didn't you?!!).
   As anyone who lives aboard a narrow boat will tell you, for most of us baths are a pure luxury. Not only is there no room for a tub in a bathroom four foot square, but a tub takes too much water--hot or otherwise. On NB Valerie three minute showers are the norm. So we each had a turn soaking in a steaming hot tub full of water.
   Afterwards we were instructed by an NHS leaflet on preparing the patient for organ surgery, to use one packet of Clinell surgical wipes and wipe the patient's body ALL over, allowing five minutes for skin to air dry before dressing--once after a shower the night before surgery and again in the morning before coming to hospital. Wiping done, I watched as Les ran back and forth in front of the bed flapping his arms like a kid, until we both fell into fits of hysterical laughter. Les did warn me when he proposed in 2010, that he loved to laugh and we would be doing a lot of it; he has kept his sense of humor--or humour--whichever you prefer, as well as his word.
   Soon it was time to drink the Pro Nutria pre-surgery carbohydrate drinks which are a part of "accelerated recovery." We watched Downton Abbey, the BBC news, and then turned out the lights and lay too edgy to sleep, cuddled like spoons in the dark. 
   Our phone alarms went off at five a.m. and it was time for Les to drink his final two pre-surgery drinks before we dressed, gathered our belongings, and headed off in the early morning dark to walk across the street, down a back drive way and into the Royal Free Hospital. 
   Up on the third floor and through a door marked Day Surgery and SAA (Surgical Admissions Area) we were met with a wide hallway lined with chairs full of patients with clipboards in hand, filling our paperwork. We approached the check-in desk where a woman with a face like a slapped ass barked at Les as he gave his name, "wait your turn."
   She then called out "anyone who hasn't finished checking in please approach the desk." After six minutes of studiously ignoring us, she finally turned to Les and demanded to see his letter. Well we didn't have a letter as he was contacted by phone for everything. She sourly turned on her stool, sorted through sets of paperwork and finally found his, sighing, "Well no wonder...you are inpatient aren't you?"
   While we sat down to double check and complete the admissions paperwork she handed us attached to a clipboard, the enclosed area suddenly heaved with a tangle of more than fifty patients and their loved ones, queuing awkwardly at the check-in desk. Les duly queued as well, handed his clipboard and papers back in, and we found a chair down the hall in a quieter section. Eventually his name was called and we entered a small room divided in two by a pleated paper curtain.
   It was here we met two very nice, bright nurses who came to double check Les' admission paperwork, take his blood pressure, swab him for MRSA, and explain the pre-and-post-surgery process, followed by a quick visit from Professor Davidson who looked bright eyed and bushy tailed, the anesthetist and other members of the surgical team.
   We were both highly challenged to hear what was being said to us over the chatter on the other side of the curtain which left us privy to all the personal details of some other patient--a woman whose surgery will include some plastic re-constructive surgery with skin flaps; might as well not bother with paper curtains and pretend privacy...
   A phlebotomist came 'round and Les had his five minutes of terror and severe discomfort (he has a deep phobia of needles) as vials were prepped with labels and the needle inserted, and then moved around a bit after which four vials of blood were drawn. So far, so good we thought despite the rude woman at the main SAA desk, everyone else was cheerful, polite, engaged, and ready to get the surgery started. 
   A lovely enhanced recovery nurse came and had a long chat with us about what to expect after surgery and she took my phone number, promising to call me as soon as she knew anything about Les' condition. We were ushered into a large lounge down the hall with big, overstuffed recliners and asked to wait while they double checked with the floor matron who booked ICU rooms. Sit we did and wait, for two and half hours after which we were called into the previous small room, met with a member of the surgical team and informed Les' surgery was canceled as there were no ICU rooms available! 
   The young surgical tech explained that over the weekend other hospitals who had no room for critically ill patients had delivered them to the RFH and as a consequence there was no room available for Les. The booking matron had to decide who needed the rooms most--someone who had just come through surgery at another hospital--or Les, who was considered "healthy and not in need of a bed." I pointed out that my husband--told he required immediate surgery on his liver to remove metastasized bowel cancer--was not well at all or he wouldn't be there waiting for surgery.
   The technician explained that we would be contacted with another possible surgery date hopefully within a week as Professor Davidson operates Mondays, Wednesdays, and Fridays. I asked if his next surgery date could also be canceled at the last minute for lack of a room and he apologetically said yes. He also informed us that Professor Davidson had fought tooth and nail in an effort to procure ICU lodgings for my husband--to no avail.
   Basically we were told that a full team of surgeons, technicians, nurses and an operating theatre stood by for two and a half hours waiting--for nothing!! Add the cost of the hotel room (£112) and our out-of-pocket costs for train fare to and from the boat, bus fare, dinner, and breakfast for me and it quickly becomes a VERY expensive scenario underscoring once more the inability of the NHS to function efficiently while wasting tax payers' money.
   Meanwhile back in the States my loved one who received a cancer diagnosis last week was operated on Saturday and the tumors were removed. This despite the fact their health insurance isn't the best by a long shot. This person is a member of the working class poor in America and still gets better, more timely health care than Les can receive--and they haven't paid years in advance for it either, while the government gains the benefits on the interest of British citizens' hard earned wages over decades.
   I am tired and I feel fragile. I've spent a year fighting for Les' life against this ugly disease. I've fought my own battle against it twice in the last eight years. I've lost a brother-in-law two weeks previously to liver cancer and been told one of my very best beloveds in this world is facing their own battle with cancer; and I cannot count on the NHS to function efficiently in Les' case...I've been told to "be of good cheer, remain hopeful, don't let it get to me, be patient"...but I am all out of understanding, patience, hope, goodwill, and cheer. My teeth ache from gritty determination and I long for a system I can count on in a time of desperate need. I know this too will pass, but not without leaving me with more scars on my soul.

21 comments:

Ian and Irene Jameison said...

Oh Jaq and Les, so sorry to read the trauma you both are going through. The NHS is wonderful if it all works okay and a right B when it doesn't. Both Ian and myself are keeping fingers crossed that the op goes ahead within the next week and that the outcome will be a positive one. Thinking of you both. xxxx

Tom and Jan said...

I can understand an overflow of ICU patients on a weekend and the lack of planned capacity. But to not be able to immediately react and cancel planned surgery before incurring the costs is a clear failure of the system.
I suspect the difference between the USA and the UK is that in the former you are a paying customer whilst in the latter you're just a component in the factory. Free has it's disadvantages! You can bet David Cameron wouldn't be sent home.....
On a more positive note.... you had a bad start last time and it worked out well in the end. Let's hope history repeats itself.
All the best.
Tom & Jan

Anonymous said...

Disgraceful

Bryce L. said...

Seems publically funded health services tend to screw up the worst. Les was told to wait, and then, "no,
not today or tomorrow, maybe the day after if we can find you a proper sized bed in ICU," and you know damn well they won't
and there's another wait.
What I call "hurry up and wait!"
You have each other and friends all round the world.
And many of us have done similar. And now your frustration is felt here in Canada as well.

No health service is perfect some far less perfect than others.

Shirley Collier said...

Saddened to hear that you are being shoved around again. Hang in there you two. Thoughts and prayers are with you.

Jacquie said...

Shockingly inept NHS, a dearest friend of mine with Leukaemia is also experiencing an un caring, disorganised hospital stay. Wishing you can get the surgery this week, however, it doesn't make up for all the distress and expense you have gone through. Sending you all my love guys. Jacquie x

Pip said...

So sorry to hear that the NHS has let you and Les down, yet again! Unfortunately, lack of funding is really taking it's toll! I mentioned to Rog that Les was due his op today, and how much better service he was getting from the Royal Free - obviously spoke too soon! Hope he doesn't have to wait more than a few days. Sending hugs.
Pip & Roger xxx

Anonymous said...

I don't know why but I can't help but feel responsible for the NHS and I am just so pissed off for you both. I only hope it all works out well soon.

Sally

Marilyn McDonald said...

Sh*t, Sh*t and sh*t again.
Nothing more to say apart from that we are sending you numerous virtual and gentle hugs. Of course you are fragile. M & D xox

Anonymous said...

How utterly frustrating for you both I can understand that your hearts must have had that sinking feeling. It seems that hospital management is suffering from a lack of communication and any forethought about their incoming patients. Lets hope that all runs smoothly next time and that it will happen soon.
Our thoughts are with you, stay positive, and you will find a way through this together. Ann and Keith nb Oakfield

Nb Yarwood said...

So here we go again. I only hope that next week will be very different and you get in and out, deed done and results positively assured. In the meantime, the 'outsiders's' view /experience of the great fat sacred cow that the British call the NHS is refreshing to read. No Politician dare criticise the NHS and the crude answer to it's woes is always money, more money. Yet money doesn't explain the rude abrupt contemptible reception you got when you arrived at TRF...poor selection and poorer performance monitoring does. Overspill from surrounding hospitals cannot be unusual yet no forward planning apparent and little customer focus that could have reasonably expected the TRF to call customers/patients ahead of their arrival at the hospital to cancel surgery etc and with no patient coming in, there would have been no surgical team waiting....assuming someone remember to call them of course...
Fingers crossed for next week!!
Lesley

Jaqueline Biggs said...

We offer our gratitude and deeply appreciative thanks to all of you. My daughter even posted a FaceBook video thanking the British boaters all along the cut for looking after her Ma and Da.

For me and Les it means we are not facing this alone. Friends and family from all over the world are right in here with us and that is why we blog--to keep everyone informed and to share what we experience and what we learn in the hopes it might benefit others.

Each of you have blessed us with the one of the greatest gifts a person can have: friendship. We are wrapping your love and care around us like a web of warmth to keep us going.
Jaq and LesXX

MikeW said...

Pam has been watching me bounce off the walls in frustration ever since I read your post. Absolutely bloody livid that a service that was the envy of all has been screwed by a mixture of incompetent management and piss poor politicians. Oh Jaq and Les I am so hoping these buggers get their sorry arses in gear for you. My prayers are heading up to that great lock keeper in the sky.
Mike
Independence

Anonymous said...

I too am almost speechless with dismay. Ditto to what everyone has already said. It should be totally unbelievable. How do you come up with your perfect quotes? Jim and I shake our head with sorrow. You are both Very Tough... and your souls Will survive. May all this horrible experience by erased by better care. And so sorry to here of your stateside friend with C now too. Life is Not fair.
Karen Pullman

Anonymous said...

Oh Jaq and Les

Life can be so unfair - I will keep my fingers and toes crossed that Les gets his surgery asap.

Thinking of you both.
Love
Kath nb.bobcat

Dave Smith said...

My heart goes out to you both.
Dave

Anonymous said...

Health care is faulty everywhere. My last nine months have been filled with horror stories, starting with being misdiagnosed which caused delays closing important time windows. After the diagnosis then months waiting to get in to see specialists, often having them cancel appointments which caused more delays in treatments. I so hear you about why is my need for health care less important than someone else. I am grateful for great medical insurance with the university but that does not mean great medical care. Korolyn

Jaqueline Biggs said...

Oh Mike you brought a great big smile to Dear Sir's lips. From your mouth to the Great Lock keeper in the Sky's ear! Thanks mate for being on our team.
Love to you and Pam,
Jaq and LesXX

Jaqueline Biggs said...

Hi Korolyn,
Thanks for your comment. You are correct about great insurance being no guarantee of appropriate or timely service. But in the States you have the easy choice to change your doctor or specialist with a phone call. Not so here. As with most things British the red tape involved could stretch around the Earth.

I too have had less than stellar experiences in the American health care system but I've never been turned away for treatment and my treatment has never been delayed or canceled.

I'm so sorry you are feeling awful Girlfriend--and stuck as well while waiting for diagnoses and treatment. I am holding you in my thoughts for whatever logjam is holding things up to be resolved soon.
JaqXX

Sue said...

I was dismayed to hear about this. How can they do that to somebody! The NHS cannot be trusted to be true to people and more especially people who are really poorly and in need of understanding and care.

I have now read your latest blog and see the surgery has been rescheduled. I wonder how much trust you have in that.

Let's all hope that they stick to their guns and get the job done next time. I don't think they would DARE not to xx

life afloat on nb tickety boo said...

All be it a bit late reading this post, I just want to say how sadly disappointed I am for you both :(

Jaqueline, your post has made me laugh cry and despair all in one go! I just want to hug you both, I also want to slap the rude receptionists face, or would that be her ass? lol.

I can only imagine how you both must have felt being told the news the operation had been cancelled. I wanted to cry just reading it.

Love to you both x

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs