"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.
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.
