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Thursday, October 31, 2013

There's No Place Like Home

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

Tuesday, October 29, 2013

Freedom is near

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

Monday, October 28, 2013

Bedside news

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

Sunday, October 27, 2013

NB Valerie Moved Today!!

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

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

Saturday, October 26, 2013

From the patient

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

My Cup runneth Over...

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

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

Friday, October 25, 2013

Aftermath

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

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

Thursday, October 24, 2013

Poor Excuses and False Assurances

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

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

Sunday, October 20, 2013

Sunday Update

 "'Ouch' is not independent of social training. One has only to prick a foreigner to appreciate that it is an English word." ~Willard Van Orman Quinne
 
   Les texted me shortly before noon to say he slept all night and felt better this morning. This is because the anesthetist gave him a bolus of Tramadol, morphine, and anti-nausea in one big wollop yesterday evening before we left, to bring Les' meds up to an acceptable level in his system so he would experience adequate pain relief when followed up by pressing the button on the medicine dispensing machine.
   When the bolus took effect last night about seven minutes after the injection, Les' eyes bugged out and grew glazed. Sliding back into his pillows he asked nurse Marian, "You know those people who inject drugs?" She glanced warily at me, looking perplexed and I could see she was wondering what he was on about and where this conversation was going. 
   "Yes, what about those people?"
   "Do they inject those drugs because it makes them feel like this?" Kev, Marian and I crack up with laughter. Les was high as a kite for the first time in his life. He shrugged his shoulders and said, "I'd be just as happy to go down the pub and have a couple of pints." No wonder he slept soundly last night.
    This morning Les managed to get up and walk, but was pretty tired out afterward. Kev and I drove in and arrived to find Les in a fair amount of pain again. He was thoroughly p'd off at the nurse who was working with him. She kept saying, "Just hit the button Les--if you will keep hitting the button the medicine will work," repeating this mantra in a tone usually reserved for small children and the mentally disabled. 
   When Kev and I looked at the machine it was almost out of medicine--only a bare drop remained. We pointed this out to her and she mumbled, "Oh fine I'll go get some more," and hustled quickly away.
   I sussed things out while we waited. His gown was stained and wet where one of his incisions had leaked, and his bed sheet was also wet and rumpled. Les assured me the staff had cleaned his incisions this morning, and put a clean gown on him, but the pain was growing steadily worse and the nurses weren't listening to him which was making Les quite agitated.
   The nurse returned in ten minutes and replaced the empty medicine in the machine. Then she told Les to press the button. He did but the green light didn't flash and when he pointed it out the nurse cut him off and said patronizingly, "Never mind the display--you don't need to read it--just press the button." Kev looked at the display monitor on the medicine machine which indicated the machine was on standby with no battery left--it had come unplugged in the back and therefore had no current with which to function and had used up its short battery life! He pointed this out to the nurse who said nothing--not one thing. She plugged it back in and from then on was far more cordial, and helpful to Les. When Nurse Ratchett left the ward he said, "She is behaving nicely in front of you but believe me she isn't like that when you aren't here." Of that I have no doubt.
   This morning the doctor said he thought Les was doing well--his bowel sounds were good and his vital signs stable, however Mr. H. has decided the "enhanced recovery program" is probably not a good idea for Les; he has been taken off all solid foods now and is only supposed to ingest liquids. No one has offered him any food today at all--no soup for lunch--nothing. He was offered Coffee, tea, and flat, room temperature water. As far as pain relief is concerned the surgeon told Les he doesn't get involved in that part of the process--that is left up to an anesthetist if needed...
   Les moved from his bed to the nearby chair for thirty minutes, sipping slowly at the banana, Blackberry smoothie I brought for him. He took a walk down the corridor and back with me and Kevin. Les' bed had been remade with clean sheets and the nurse cleaned his incision and got him into a clean gown. He was laying in bed and said he felt a bit better. He looked at me lovingly.
   "I wait every day to see you come through the doorway. When I see your face I think to myself, 'That's what it's all about. I'll get better and go home to Jaq'."
   For myself, I have finally been able to speak with my daughter in America who thinks an NG tube down Les' nose to his stomach would be a very good thing right now. It will give his system time to recover. I will see how Les is faring tomorrow and discuss this with him. If it means he recovers more quickly then we should consider it. 
   It is a one hour minimum (depending on traffic) bus ride in to Watford creeping behind the lunchtime traffic crowding the roads, and another ten minute bus ride to the hospital; two hours visiting and then two buses in reverse. The Arriva 500 leaves Watford and crawls through Hunton/Langleybury, Kings Langley, Apsley, Hemel Hempstead, Berkhamsted, and Northchurch before my stop comes up. It is a double decker heading back in the early evening, filled with junior high and high school teenagers--loud and obnoxious as kids that age can be. It's been a lovely respite to hitch a ride with Kev yesterday and today while he was off work for the weekend. I get a little teary eyed and sad when I think of Val; she didn't live to see how well her youngest son turned out. She would be very proud indeed. 
  I am so grateful to get home every evening to NB Valerie. I start the engine to top up the batteries, rake out the ash, start a fire in the wood stove, make myself a cup of tea and dry out from the deluge which poured from the clouds accompanied by lightening and thunder. I make notes of everything that occurred today and a list of things I need to do tomorrow. I washed Les' soiled clothes, towels and PJ's and will return them to him when I go to visit. I remembered to pick up a Towpath Talk and Kev bought Waterways World and Canal Boat magazines for his dad.
   I don't know if I can manage to get home cooked food to Les while it is still hot enough to eat, but when he is cleared to eat solids again I will try. My thanks to our daughter-in-law Bev who brought us some styrofoam containers to keep food hot and who is taking Ginger Ale and cold, bottled water up for Les tonight. 
   Thanks everyone for your kindness and concern. Sorry I came unhinged today. It's been very hard, complicated by being the foreigner--the one with the accent--the person who sees everything around her with a totally different perspective and who does not always understand how things go down in Britain or why they go as they do.

From Bad to Worse

   Things are not well with Les. The last two days have been hell for me but especially for Les. His Hep lock (cannula in Brit medspeak) delivering pain meds started blocking up on Thursday night/Friday early am. I was told nurses flushed it numerous times, still by the time staff shift changed on Friday AM Les still had an unfunctioning cannula in his hand and NO PAIN MEDS IN HIS SYSTEM!
   Finally a bright nurse on the am shift realized the problem and put in an emergency call to the registrar on duty (Brit medspeak for doctor) but she didn't wait for him and pulled the old cannula out and installed a new one. By the time I arrived at 2 pm Friday Les looked tired and overwrought but was getting some meds into his system.
   Saturday I was really worried because he had not tried to call or text me during the day. When I arrived at hospital at 2:45 pm he looked like death, grey-faced, sitting in a chair with his eyes closed, a vomit pan in his lap. He in fact vomited twice that morning bringing up nearly 2 cups of liquid and he feebly whispered that the registrar on duty told him if it happened again they were going to put a feeding tube down his nose which scared him. Les was experiencing searing pain again so bad his diaphragm was spasming and sounded like he had hiccups--each spasm jarring him with yet more pain. It took me and Kev two hours to get it all sorted. Thank the Goddess for my daughter-in-law Joanne and my step son Kev. Without them I would be lost.
   Les didn't have an adequate amount of pain meds in his system and he was in so much pain he was vomiting from it. The anesthetist angrily apologized and said " I'm sorry, this isn't right; no one should suffer like this." Damn right and I am--as a foreigner who has had 8 operations in U.S. hospitals and not a single day of pain in any of them--pissed off, frightened and totally dismayed.
   This is what I've seen and experienced to date: nursing staff are oblivious to what is actually occurring with their patients who are stacked 6 in a ward with no privacy or peace and quiet at all; one nurse had the gall to suggest that Les was experiencing "some wind (gas)" and could not be bothered to look after my husband until I insisted on talking with the doctor. The physician finally arrived and when he said "Jump" by god that nurse finally got off her ass and did what she was told and got onto what Les needed--hours previously.
   Les was sitting up in bed, in a hospital gown bunched up around his waist-- uncovered because it is way too hot in the room, no fans or air conditioning of any kind, or any way to control the heat. He was vomiting in front of an audience of other patients and their visitors--eleven strangers all told, and the guy in the next bed over had the gall to complain to his wife about Les "Kicking off again."
   The NHS is a system which fosters benign neglect of patients who are lucky if they survive a hospital experience over here in my opinion. So many things have gone wrong from the evening of his first day in "enhanced recovery" there isn't room to list them all.
   I am a frightened foreigner watching the one I love suffer in an antiquated system. Trouble is, this system is all Brits know. Americans comparing U.S. hospital care sound like over privileged, whiners but I tell you this for a fact: U.S. Health care is some of the best in the world--what we get for what we pay is worth every penny--even bankruptcy. We don't know that until we see what goes on somewhere else.
   In the U.S. it is standard for there to be no more than two patients to a room; hospitals are quiet zones and staff are expected to behave professionally. Nurses come around and take vitals once every hour and they check the machines delivering pain meds to ensure they are working and the patient is getting the meds properly.
   As far as I know, not one nurse did this for Les yesterday. He felt ill, has had NO SLEEP in over 24 hours and so he forgot to press the button on the pain med machine. The hospital is so noisy it sounds like a cocktail party is ongoing--staff raise their voices and call to one another from room to room, stand in the doorway discussing other patients, and behave more like keepers at a mental ward, dispensing pats on the back and tea from a goddamn trolley but very little actual medical care from what I can see. 
   It wasn't until Kevin and I showed up and began questioning what was going on with my husband that anyone took notice and started doing what they were paid to do. Yet I am only allowed to be there during visiting hours. I HATE THIS!!!
   Hospital care in England is like some third world country by comparison with America. If I become seriously ill over here I want my family to find a way to get me back to the U.S. Please, please don't leave me here!!
   I am worried sick about Les who has been allowed to fill his stomach with greasy, fiber heavy foods he hasn't eaten in months (beef casserole, mashed potatoes--broccoli, sugar heavy puddings) before his intestines were functioning properly first. And the food at Watford Hospital I am told is microwaved!!! There is no nutrition in microwaved food at all which is why my oncologist told me flat out not to eat microwaved food ever again. Microwaving heats food but it also kills all vitamins and enzymes and destroys the minerals in the process.
   How can Les be expected to recover enough to come home when he gets no quality rest, his pain meds are not being properly monitored, he has no privacy and the noise level is so bad sometimes I have to cover my ears to think; he is allowed to eat whatever he wants but not offered what his body actually needs to begin quality functioning, and he is offered microwaved food with no nutrition. I am so scared for him--that he won't make it back home where I can take care of him like he needs and deserves.
   I am frequently treated over here like a demanding foreigner and ignored or dismissed with hostility. I am exhausted, scared and I feel so isolated and alone. I miss my country, and my daughters and my son-in-law Ben terribly. He is a medical surgery technician and my youngest daughter is a trained Certified Nurse Assistant. I could use someone with medical knowledge on our side...

Thursday, October 17, 2013

Post Surgery

"The secret to a rich life is to have more beginnings than endings." ~Dave Weinbaum 

   We spent the day before surgery at the Travel Lodge near the hospital so Les could go through the complete evacuation of his bowels in as much comfort as one can have when enduring the nasty tasting bowel prep. If you live on a boat and face this procedure we highly recommend you do this--you won't regret having access to a flush toilet that you do not have to empty and an endless supply of hot showers and baths.
   We were told he should not eat anything on Tuesday so he didn't. We were up all night anyway with the evacuation process, then Kevin took us to hospital at 6:55 am for check-in. There were six others awaiting check in as well and they ran out of beds when they got to Les. So we had to go sit up in the check out lounge on the 5th floor while the matron scurried around looking for a bed for him. Honestly!!
  Bed found, we met with the surgeon whom we did not recognize without his red, enraged face and spittle flying from his mouth. We also met with the anesthetist, and filled out tons of paper work. Les was scheduled to be the first in for surgery by Mr. H. but--oops! someone came into hospital the night before and he took precedence. Les' surgery was bumped up to 11 am. which came and went while we sat in the lounge. Finally at 11:30 he was given a gown and some Ted hose (support against deep vein thrombosis) and at noon they came for him. Les hugged us both and told Kevin, "Take good care of my baby."
   In the states, you are admitted to hospital, a band is put on your wrist, you are escorted ASAP to a private pre-op cubicle where you change into a gown, get on a bed, and your family can stay in with you while they insert a Hep-lock in a vein in the top of your hand and begin to administer IV fluids to ensure the patient is fully hydrated and electrolyte balanced. When it is time they wheel you off to the pre-op theatre to begin anesthetic administration, etc.
  It was so weird because over here they walk the patient to the pre-op area. It was like that crazy advert on British Telly "You're so money supermarket" where the astronauts are walking to the space shuttle and the average bloke joins them wearing a construction hard hat. Les and the surgery technician walked away from us up the hallway to the operating theatres, the surgery tech in his burgundy scrubs and little white hat, stethoscope around his neck and Les in his red, white and blue striped terry cloth dressing gown (bathrobe), navy Ted hose and matching slippers. The theme song from the movie 2001 Space Odyssey played in my head...
   Kev and I went for a bit of breakfast and returned to settle in for the wait. We knew the surgery would be long--the surgeon said about four and a half hours. By 6 pm we still had heard nothing and both of us were worried sick and feeling forgotten. I called the ward sister's number (ward nurse) and listened while she put the phone down and commenced calling other hospital areas searching for Les. It was not very reassuring. Finally she came back to me and said he was still in surgery--she thought perhaps an emergency had come in as they were  prepping him for the operating theatre and his surgery may have been moved back a bit. 
   I was shocked and angry that Les might have been kept waiting yet again but could do nothing but wait myself and wonder. Finally at 7 pm the matron responded to my call. She found Kevin and me in the deserted and semi-darkened second floor cantine near the admission and information desk, sitting alone. She said Les had just come out of surgery which took a bit longer than expected. 
   Although visiting times were 6:30-7:30, I told her I would not leave the hospital until I could see Les and speak with him. So she ushered Kev and I up to the fifth floor staff room, explained to the floor staff who were were and why we were there, and left us to it. 
   We waited another two and half hours for Les to come out of the recovery room. A wheeled bed went by the staff room window at one point and I said, "Kev is that Les?" He thought maybe it was--we'd only seen the back of the man's head as the bed went by. I grabbed the bag with Les' valuables and quietly stepped into the hallway, making my way to his bedside. The patient had an oxygen mask over his face and the lighting in the ward was really early fluorescent. I looked and nearly collapsed--my husband had aged fifteen years and had a gash on the top of his head! Of course it wasn't Les but some other poor man who was nearly accosted by an almost hysterical American!
   Sobered, I went back to the staff room to wait some more. A young surgeon joined us eventually. Colin, his name was and he was Mr. H's second. He said the surgery was long but it went quite well. The tumor was about as big as a three year old's fist and very nearly closed up completely. He found it hard to believe Les was passing anything at all.
   The good news was that they got it all in situ and the cancer had not broken through the outer wall of Les' rectum. We have to wait now for the pathology lab results on Les' lymph nodes which they also took from his groin, but the surgeons did not find any further involvement of cancer anywhere else. Colin assured us he would be checking in on Les every day and we could ask him any questions at any time. Kev and I hugged each other, tears in our eyes. Finally Les' bed went by and he turned his head to the window, looked bleary eyed at us and raised his hand. Thank the Goddess!!
   Kevin and I waited outside his ward room until they had Les sorted in his bed, the pain machine hooked up, and some other things organized. Les had an oxygen mask on and his eyes were closed. I took one hand and Kev took the other. Les opened his eyes, looked intently at me, then smiled and slipped his hand out of mine, making a loose fist and tapping his heart twice.
   We left at 10:30 p.m. after Les came 'round fully to coherence (he said a couple of things in his drug haze that were naughty and won't be repeated here but made Kev and I laugh like crazy. No doubt Les has no memory of it at all. Wink-wink-nudge-nudge!!)
   I got a text from Les just now this morning saying "Don't worry about me, doing good. Can't wait to see you. I love you very much.XXXX"
  I'm crying as I write this. Thank you from the bottom of my heart to our family and friends all over this big, round world for your thoughts, prayers, good wishes and well--words aren't enough really. Les and I have felt all along that we were cradled in a hug the size of this planet made up of the care and kindness of each of you. Blessed Be!

Sunday, October 13, 2013

The Waiting Game: Part Two. Radiotherapy Days 4 and 5 and The Aftermath

“We do state-of-the-art medicine. In other words, we find the biochemical, nutritional and environmental causes and cures rather than blindly drugging everything...there is no substitute for finding the underlying biochemical causes and cures. This is real medicine. This is where medicine should and would have been decades ago, if it had not been abducted by the pharmaceutical industry.”
― Sherry A. Rogers, Detoxify or Die
 
Day Four. The three of us blow into Mt. Vernon Cancer Centre with the cold north wind that sprung up late last night. Before we left home a fire was started and heaped with coal so we will return to a warm, cozy boat--essential for Les right now. We are bundled in our down jackets, sweaters and hats.
   The talk amongst those of us waiting today is about the sudden change in the weather. Les sips his six glasses of water warmed by hot water from home and soon enough the radiographer calls his name. 
   Kevin and I sit quietly and listen while two of the three other women discuss their treatments. A petite, rail thin woman with black frame glasses sits across from me. Her bald head is covered by a thick, dark scarf. 
   "I was lucky to get into hospital within four weeks for my surgery."
   "Me too," says her traveling companion garbed in wool slacks, a long, thick dark green sweater, her face framed by a warm knitted cap hiding her baldness.
   "How long was your chemotherapy?"
   "Oh it was six treatments--one a week for six weeks. My hair fell out right all at once after the third treatment. It just came out all in clumps and it was everywhere--all over the house--even found it floating in my food so I just had my head shaved." She stared off into space as though remembering what it felt like to have hair, glancing quickly over at me and then away. I felt suddenly awkward sitting there with sliver, shining locks advertising my good health and good fortune. 
   The petite woman piped up, "Yeah it was like that for me too. I woke up after the second chemotherapy treatment and me hair was lyin' in clumps on me pillow." She smiled at me as she talked, and adjusted her head scarf which was slipping over her naked pate, away from her face. "I was told by me doctor I only needed some radiotherapy as a follow up after the surgery."
   "I was told that too," says the green sweatered woman, "but then he said I was eligible for chemotherapy so I thought I might as well--you gotta' get your money 's worth."  
   "That's right," replied the slight, frail woman emphatically, nodding her head.
   A loaded look passed between me and Kevin. He quickly bent his head to read something on his phone and I closed my eyes in weary grief for this woman who thought she had put something over on the NHS by accepting chemotherapy when she may not have needed it but she was "eligible for it."
   Mount Vernon is a clinical trial site for new chemo drugs. Drug trials require two groups: one which receives the trial therapy and a control group which does not. It isn't ethical to withhold medicine from someone who may benefit from it, but convincing a patient they are "eligible" for a treatment certainly does provide a control group undergoing current chemo treatment by which those in the clinical trials for new chemo drugs may be measured. I am appalled by the direction in which my thoughts have travelled and overwhelmed by this conversation.
   Later in the car Kev tells me he had to bite his tongue and focus on his phone to keep from saying, "Lady you didn't get your money's worth out of them--they got their money's worth and then some out of you."
   I love my sweet, smart step-son Kevin who favors his lovely mother in looks and his dad in nature. Val also came to Mt. Vernon for cancer treatment; nevertheless she died ten weeks after diagnosis. Her final weeks and days were ruled by suffering caused not only by this despicable disease but also by palliative chemotherapy treatment. Kev needed to drive his dad to these appointments; he needed to be of some help for his dad because at sixteen he was too young to help his mum. I am overwhelmed with love and gratitude for his help and courage. 
   There are those who will say I am being overly depressive and pessimistic. I will say this: of all the people with cancer I've known in my life, I only know of one person in her 70's who experienced few side effects from treatment. Diagnosed with metastatic breast cancer, Marilyn had double mastectomies and sailed through chemotherapy--the only side effects of which she was consciously aware were feeling quite spent and tired, and the loss of her straight, fine hair which grew back in slightly curly and much darker. Whether or not she has had any long term side effects I will never know since I sold my home and moved to Britain.
   I caution folks against comparing their cancer treatment experiences with someone else, if their cancer is not the same kind (there are over 2000 different genetic variations of this disease). Not all cancers behave the same way. Breast cells are entirely different in form and function from colon cells, which differ again from prostate or ovarian cells. Each reacts differently to the multitude (over fifty kinds) of chemo drugs and radioactive rays: light, heat and microwaves; Alpha, Beta and Gamma. There are also different diagnostic stages: SNM--Stage I, II, III, IV; Nodes involved--1+; Metastasis: how far and to which other organs has the cancer spread? These differential spreads underscore the wide range of therapeutic dosages involved in the treatment of cancer.
   In 2008 23,000 women in the United States were diagnosed with ovarian cancer including me; that same year 16,000 of us died. I opted for alternative treatments after exhaustive research into traditional chemotherapy for ovarian cancer. The treatment drug of choice is Cisplatin. It is basically a chemical cocktail containing liquid platinum which is pumped into one's veins.
   When mining platinum it is possible after a period of exposure to be overwhelmed by the following symptoms: neuropathy (permanent loss of feeling in hands, feet, fingers, toes), hearing loss, weakened heart muscle, epithelial cells sloughing off to leave one raw and exposed from the lining of one's mouth, down the esophagus. The entire stomach lining slides off, as do all the cells lining the small intestines, the large colon, and the rectum; loss of all fingernails and toenails with growth of green, furry fungus on nail beds and tongue; severe vomiting, diarrhea and dehydration, and ultimately death.
   These are the effects of heavy metal poisoning for which a specialist will do everything possible to save your life by cleansing it from your system. Unless of course you are diagnosed with ovarian cancer in which case a specialist will inject it into you and give you heavy metal poisoning in an effort to combat the enemy--a perfect example of winning the battle and losing the war. This treatment and outcome are a universe away from downing a daily dose of methotrexate chemo pills which make one feel tired, a bit nauseous and cause hair loss.
   When we met with the stoma nurse last week I explained to her that I had an anterior resection of my colon (same surgery Les will have to remove the tumor) for diverticulitis and a stoma was not necessary. Why was it a requirement for Les?
   I already knew the answer but the oncologist had evaded some of my questions, refusing to look me in the eye at times because I think he knew that I knew the answer and he didn't want to tell Les...evasion and the practice of partial disclosure are common in the cancer industry. Cancer surgeons and oncologists are actually taught these skills in medical school as a means of handling patients.
   Les deserved to understand the facts about his treatment in full. I will never forget my mother's shocked look as awareness dawned about exactly what had been burned away by radiation therapy. Not just the cancer then...she would never again taste anything she ate if she could actually swallow a mere morsel. Without salivary glands even a grain of rice is impossible. My heart bled and still bleeds when I remember how angry she was--betrayed by the doctor she counted on to help her to an "eighty percent chance of recovery"; he did not tell her what to expect and we did not know what questions to ask.
   The stoma nurse looked at me in wide eyed shock--she could not believe she would have to be the one to explain this to us.
   "A stoma is necessary for your your husband's colon to heal up after surgery because of the radiotherapy before hand..."
   "Because the radiation is going to cause damage to his colon isn't it?"
   "Yes. This is the reason why surgery must follow on to the radiotherapy as close as it does; to remove the damaged colon before he experiences too many side effects."
   I looked at Les to make sure her words registered. I did this because too often we've been told, "you won't actually feel anything. All you do is lay down on a table, the machine makes a pulsing sound, and when they are finished you get up and leave. You might feel a bit tired afterward or experience a touch of nausea." This makes radiotherapy sound like some magical fun ride experience hosted by smiling radiographers taking your ticket and ushering you aboard for the unexpected thrill of a lifetime.  
   Too often patients don't discover for themselves what actually happens to their body during treatment so they don't know what questions to ask and the oncologist ringmaster will not divulge anything more than they are pressed to tell.
   To understand exactly what occurs during radiotherapy think of a really hot, sunny day. Nearly everyone has experienced too much sun and the resultant sunburn that follows with red, blistered skin and searing pain. Now magnify that by a factor of 10. Sunshine is radioactive UV light rays.
   Since Mr. H refused to operate without prior cytotoxic or radiation treatment, I pushed for Les to choose the five day route instead of the five weeks of daily radiotherapy followed by three months of recuperation after which surgery could then be considered because I've read first hand on bowel and stomach cancer patient forums exactly what happens: seared, burned, damaged intestines and colon become deeply scarred and adhesions form. Basically the scar tissue sticks together and the coils of intestine become a rigid mass which causes excruciating pain and will not function properly. Too often patients end up having gut surgery repeatedly to slice apart the stuck intestines and colon, causing yet more scarring and further adhesions.
   I promise you most oncologists will never explain this--if patients were told what to expect they might run screaming from the room. Many patients on the forums for stomach and bowel cancer say if they had known what was in store for them they would not have had radiation treatments. They would have had their stomach, bowels, and/or colon removed and lived with a G tube for feeding or a stoma bag for life. Many go on to do just that after terrible suffering. This is what the stoma nurse understood only too well.
   Day five. The wind rocked NB Valerie as we slept into the pre-dawn hours. I am grateful Les had a good night--he slept well and didn't get up once; some nights he is up over twenty times. We bundle into our jeans, hoodies, sweaters, down jackets and meet Kevin at the bridge over the nearby lock. 
   We are quickly in and out of the treatment centre this morning. Soon we say our final goodbyes to the frail, small woman and her bald companion; The Grey Lady, The Gent, and all the others who crowd the walls waiting for their name to be called. Outside Kevin does what he has done every day this week: he seeks out someone in the car park who has just arrived and is suffering from shock at a cancer diagnosis and the £5 daily parking fee, and he offers them our parking ticket which has several hours on it yet. Always the recipient is surprised and asks, "Do I owe you for this? Do you want some money?"
   "Nope," replies our Kevin with a grin as he pays it forward...

The Aftermath of Radiotherapy Thus Far
   On the ride home Les is hit with a bout of nausea and his belly and bum are painful. Back on board the boat Les is cold despite sitting three feet from the wood stove roaring away. He stands up and leans against the wall near the bathroom, head in hands. Later his bladder began to tingle a bit with urination. The cumulative effect of five days of radiation therapy is beginning now just as the stoma nurse warned it would. 
   As the weekend has worn on Les' symptoms are accelerating in response to the cumulative effect of five days bombardment of gamma rays on his pelvis, bladder, colon, rectum, reproductive organs and all the other bits involved in this area. Friends call to ask how he is doing and in typical Brit stiff-upper-lip form he says, "Fine, fine--can't grumble."
   His irradiated colon is sloughing off its dead mucosa lining. His rectum feels as though it is turning itself inside out. Trips to the loo occur every thirty to forty minutes throughout the day and night. His gut bubbles in despair as millions of pre and pro biotic intestinal bacteria gasp their last.The tingling in his bladder is now a burning sensation; the need to void is ever more pronounced. Les is spent and exhausted. He only wants to find a comfortable position and sleep but there is no such a thing.
   Only time will tell if Les' side effects grow worse. We were warned these may be long term effects he will have to live with forever more. I am doing everything in my power as a healer to counteract the damage and ameliorate the effects now and in the future.

Gradual Disclosure and Overinflated Statistics 
   If you think I am being overly dramatic then ask yourself how many cancer "survivors" do you know who have had radiotherapy or chemotherapy and had a recurrence of cancer down the road--two, three, four, six years or a decade later? How many of those individuals believe they are just unlucky; fated to suffer from cancer, possibly to die from it eventually? I know nearly a dozen people facing a second bout of cancer as I write this...sadly I know of almost as many who lost their battles and died.
   All of them had approved and recommended therapy. If that is the case then the therapy didn't really work did it? I mean the reason traditional cancer therapy is so deadly poisonous is to aggressively combat the disease--to kill the cancer. If it had done the job then why would one experience a relapse? Unless the therapy itself actually caused the secondary cancers such as Leukemia and Hodgkin's Lymphoma. What kind of treatment causes the very disease it is supposed to eradicate??
   Finally, if Les' oncologist is acutely aware that diet "can prevent more (his emphasis) than 70% of all cancers..." why don't he and his colleagues educate their patients about this fundamental aspect of survival? Cancer physicians' refusal to educate their patients about the key importance of nutrition and how it just might be a front line tool to keep cancer from taking hold or recurring makes them a bit culpable for their patient's suffering in my opinion.
   Think about it... cancer takes many years to grow unchecked inside the human body in order to reach the size of a tumorous mass which threatens one's life. During that time we carry on per usual thinking we are healthy, not knowing what is growing inside.

Healthy People Have a Cancer Too
   Experts now know that "healthy" people have cancer circulating in their bloodstream approximately 6-8 times throughout their lives, but it is disposed of by their healthy immune systems before it can settle in and make itself at home. Proper nutrition is the essential key to a healthy immune system. It therefore follows logically in my mind that cancer--when caught early enough--can also be fought with proper nutrition, and specific supplements that reverse its growth, expose the tumor and cells to the immune system, and make the host environment too hostile for cancer to thrive and survive--without damaging the patient.
   In his book Living Proof Myeloma patient Dr. Micheal-Gearin Tosh Ph.D cautions cancer patients thusly, "be proof against a rush to treatment...there is a cancer mentality that exists amongst physicians just as it does among the public at large....cancer is currently the illness onto which more than any other we project our fears of suffering and death...cancer is a death sentence...and patients are rushed to treatment without adequate time to consider all the options." (Living Proof; p. 200) Sadly though patients are not offered all the options--only those that enrich the nuclear medicine trade and the Pharmaceutical companies who behave as though they alone have the definitive answer to successfully treating cancer.
   "Be proof against proof. Be proof against the concept of proof in the sense of being cautious if consultants bully you with it....Simon Carr (The Boys are Back in Town, p. 44) found that the manner of cancer doctors seems "to be designed to crush you into submission." We certainly experienced this first hand with Mr. H's arrogant rudeness in which we feel he basically blackmailed Les into agreeing to radiotherapy before surgery, suggesting he would refuse to remove the cancerous tumor otherwise as it would not be "in the patient's best interest" to do so!
   Gearin-Tosh continues: "I am not arguing that a rush to judgement is never vital. Hippocrates wrote 2500 years ago, 'Time is that in which there is opportunity, and opportunity is that in which there is not much time. Healing is a matter of time, but it is also a matter of opportunity.' There may an opportunity for treatment which must be taken at once. Miss it and the chance is gone. You are dead. 
   I am arguing however that if you are being "rushed to treatment" on the basis of statistical evidence, this evidence may fall short of what you normally understand to be proof." (p. 203)
   "Dr. Ulrich Abel (clinical researcher on epithelial cancer and statistics) observes that 'many patients are treated according to uniform study protocols rather than to individual plans suiting their symptoms and needs...many oncologists take it for granted that response to therapy prolongs survival, an opinion which is based on a fallacy and which is not supported by clinical studies...it should arouse concern that according to opinion polls, many oncologists would decline to accept cytotoxic therapy in their own case.'" (Living Proof, P. 204).
   "Why do those who are employed in the cancer industry as Les' surgeon calls it, routinely engage in the practice of deceit: evasive answers, non-disclosure of all side effects, gradual disclosure as treatment commences, using manipulated statistics to reassure patients regarding the efficacy of their treatment?
   John Diamond, in his heroic account of cancer, C: Because Cowards Get Cancer Too..., identifies the principle of gradual disclosure. "it was with radiotherapy I would first discover the principle of gradual disclosure which almost all doctors practice. The principle is simple and at a first glance, makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best case scenario. In fact: the radiotherapy didn't kill the primary (cancer) and led to eight hours of major surgery." (pp. 63-64)
   At its most basic, gradual disclosure amounts to lying to a patient. By the time they discover the truth--if they ever do--patients are usually so ill from the side effects of treatment they are too damned ill and exhausted to be outraged.
   While we were told 80% of patients have a chance of recovering from adeno-carcinoma of the soft palate which is what and where my mother's cancer expressed itself, the actual statistic for a woman age 70 was less than 30% recovery with treatment. The first figure is what one gets when patients of ALL ages are lumped together. The young survive traditional cytotoxic therapy better than the old; they also skew the statistics and oncologists know this.
   Mom heard the doctor utter the word "recovery" and assumed radiation treatments would make cancer go away--make her well again. She placed her implicit faith in the doctors and their nuclear cure. The oncologist knew there was no cure or recovery in site for my mother, yet he did not disavow us of the idea of recovery which was purposely planted in our minds. Gearin-Tosh's best friend and fellow researcher Carmen Wheatley finds the following statement by Dr. Daniel D. Van Hoff MD (Oncologist), "'...it has been well documented that physicians tend to overestimate the survival times of their patients by a factor of 3-4 times the actual survival of the patient. Oncology Today, p. 90'" (Living Proof; M. Gearin-Tosh, P. 89).

First Do No Harm
   What is the first rule of medicine? First do no harm. The oncologist shared with us that his wife had treatment for cancer at Mt. Vernon several years ago. Her experience was so painful she refuses to set foot on the premises ever again.
   I believe that some day, perhaps when my eight and two year old grandsons are very, very old grandfathers themselves, the world will look back on the current cancer treatment modalities the same way we look back at the 17th century gold standard physicians' treatment for syphilis with mercury: with utter horror and disbelief. George Bernard Shaw's play The Doctor's Dilemma starts with a lengthy preface: "The medical profession is a murderous absurdity...which practices the most revolting cruelties in the pursuit of knowledge."
   It is not only soldiers in the military who earn the red badge of courage. My heart goes out to anyone who has endured traditional cancer therapies. Some are more than survivors of cancer; they are also survivors of the treatment.