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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 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), "' 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.


Anonymous said...

Indeed Jaq, as others have said, this is a book more than worth reading. Required reading it should be. As all have said you do write beautifully and with passion. We feel, we all who read this, feel deeply for Les and for all the other souls are are caught by the "industry" and the disease.

Minister good Jaq! Major hugs to you both.
Pullman Karen now in Pacifica, CA.

Sarah said...

Interesting but not surprising that you got a more honest and possibly better informed answer from the nurse. Doctors and consultants like first world war generals blythely prescribe treatment that they don't have to witness the effects of - it's the nurses on the front line that pick up the pieces and see it how it really is.

Jaqueline Biggs said...

Hi Karen,
As one who is intimately familiar with this disease and the treatments, I value your opinion immensely. We are thrilled you are now on the other side of it all and regaining strength enough to travel and enjoy life again.
Our love to you and Jim,
Jaq and LesXX

Jaqueline Biggs said...

I agree whole heartedly with you Sarah. Nurses make the hospitals and medical centers of the world function--not physicians. Nurses are the ones intimately informed about the day to day functioning of patients and they are seldom ever paid what they are worth--and doctors are often paid so much more than they are worth.

Anonymous said...

I just read your account of the treatment days spent at the hospital.
You are an excellent advocate and I know that Les is in good hands with you at this side.
Ironically a friend of ours did have to have surgery as the walls of the areas affected by chemo and radiation, stuck together causing no movement in the bowel. She had a complete hysterectomy and a bowel re section.

A dear friend of mine from Hawaii who now lives in Portland is going thru gamma knife treatments and radical chemo and radiation for lung cancer. Her dad worked at a Uranium plant in Fernan, Ohio.
The stories go on and on.
Your book is there, go for it.
Blessings to you both.
Take care my friend,

Neil Corbett said...

Your post yesterday, like many of yours, leaves me deeply moved. And lost for words.
We think of you both often, in fact I dreamt of you last night! We continue to wish you well and give you a virtual hug. And wish we could do more.
Kath and Neil (nb Herbie)

Sheila said...

Reading your blog is fascinating, and terrifying in equal measure. I realise I know nothing about this disease despite my mother suffering it twice (breast and bowel). Even at the moment two dear friends are going through chemo treatment and your information makes me very frightened for them. However thank you so much - information does indeed make us powerful. Sheila

Jaqueline Biggs said...

Oh Sara,
The older we live the more family, friends and loved ones we lose. You have lost so many this past year and grieve with you over each one. Getting old is not for sissies--not only for what age does to each of us but what it does to those we love.
Big hugs and lots of love,

Jaqueline Biggs said...

Hi Kath,
We've wanted to catch up with you and Neil for so long now for obvious reasons--I've followed your blog before I knew Les, when I lived in the States. He's followed your blog since you began writing it. Now if course we will want the details of your dream!!

thank you for your kind words of encouragement and support. A writer could not ask for more; Les and I are blessed to know you are holding us in your thoughts.
Take care,
Jaq and LesXX

Jaqueline Biggs said...

I am grieved to hear of your mother's ongoing battle. I will hold her in my thoughts and prayers to The Goddess. Cancer is terrifying all on its own; the traditional treatments make it even more so. I am humbled and happy that my words and the sharing of our story is in some measure helping others who are in similar circumstances or have a loved one facing the same. As you say, "Knowledge is power." At the very least the dispensers of treatments which are too often as bad if not worse than the disease have no place to hide when they know patients and their families understand all the facts.
Blessed be,

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs