The Waiting Game: Part One

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait, and watch, and work; you don't give up." ~Anne Lamott, American novelist and progressive political activist, public speaker, and writing teacher. 

   It has been a very long week--one for which we have been forced to wait by the surgeon who "only does these surgeries once every three weeks," according to the stoma nurse. To which kind of surgery is she referring? anterior re-sections of the colon? Nope--that cannot be--since Mr. H's specialty is procto-colorectal surgery. Ahhh, I see now! The nurse means NHS surgeries. One every three weeks. The rest of the time he is busy lining his pockets with the money of private paying patients...which is doubtless why radiation therapy and our lives had to be put on hold, why we've been forced yet again to play the waiting game. So here I am at last, sitting in a patient waiting room at Mount Vernon Cancer Centre while Les is in another room behind VERY thick walls, receiving gamma ray radiation to his pelvis. It is day One. 
   The waiting room fills up--mostly with patients on their own, only one or two family members along for the ride on a bright October Monday morning. Step-son Kevin and I sit quietly listening to others talk around us, as they discuss their treatment days, times and overall length. More patients arrive from throughout Hertfordshire on the NHS bus. They greet one another, involuntary compatriots on the 2013 Cancer Tour.
   Les is only actually in the vaulted room for ten minutes before he throws open the waiting room door where he strikes a pose, grinning like a mad man in triumphant flamboyance, hands on hips like a super hero--all he needed was a billowing cape!
   "Well I've just returned from my ride on the space ship. Anyone else in here been a passenger on it? Did you see the little men in white suits?" Titters break out from the assembled and a level of tension washes out of the room. We say our shy goodbyes and leave. I love this man who makes me laugh at the best of times and even more at the worst of times. I love him so very, very much...

   Day two. This wing of Mt. Vernon hosts nine linear accelerators of various sizes with which to treat cancer with radiation. Each machine has its own pod and identical cramped, glass window-walled waiting rooms painted pale sage green. On the one solid wall there are framed photos of nature scenes. Ten chairs are jammed in along the edges with a small round occasional table half way along, littered with the requisite magazines. The lighting is early fluorescent.

  In LA 9 at 9:10 am there is just me and Kevin. Another woman was waiting for her husband whose appointment was at 9 am. He practically ran from the treatment lab, not waiting for his wife and not looking in the waiting room. Knocking impatiently on the glass door with his knuckles, he continued out to the hallway moving quickly for the front door. She jumped up and loped after her swiftly retreating spouse. 
   While Les is in getting set up for treatment, the waiting room for LA 9 begins to fill up. There is a forty something man in denim jeans and work shirt, with his tote bag in his lap. Patients are asked to bring a dressing gown and change into it to make the process as quick as possible--a virtual assembly line of cancer patients waiting in their bath robes. Some of us bring warm bottled water as patients must ingest six cups of water within twenty minutes prior to treatment. The water in the free dispenser is ice cold and after six cups most patients are so chilled they shiver uncontrollably--anathema when laying under the sites of the linear accelerator bombarding their fragile tissues with Gamma rays. Denim Man ignores everyone, burying his head in a book until called to change into his robe.
   The waiting room door swung open to admit an East Indian gentleman dressed in layers of charcoal grey casual wear, tote bag in hand. We made his acquaintance yesterday. 
   "Good morning madam, how are you today?" He asked me courteously in a soft voice tinged with a slight Asian accent. We chatted briefly. His radiation treatment began September 9th and continues every week day until October 29th. The Mount Vernon Cancer Centre treats 5000 patients annually; 150 patients receive chemotherapy each week at just this one hospital. There are four others in the country which treat cancer patients. The numbers add up and tick silently across a screen in my head...

  The glass door opens again and an older woman stravages in pushing a dark red zimmer frame (walker). Swaddled in a winter coat and scarf, sniffling as she enters, crumpled wads of tissue peek out between her gnarled fingers. Nodding to the East Indian Gent, she pushes forward and we all scoot back out of the way. Struggling out of her coat, she sits down next to me. Pushing thick, curled strands of long, grey hair away from her face, clutching a shapeless sweater tightly around her bosom, the Grey Lady as I will call her, tells us about her NHS bus trip from Luton, mentioning other cancer patients who also made the slog each day. The poor dear is miserable with a cold; tired from the radiotherapy and the early hour. 
   She is an inveterate talker. Noticing my accent, she asks, "Are you American?" When I smile and nod yes, our newest cohort shares the news that her son lives in Arizona. I ask if she'd ever been to visit. Her round, sallow skinned face breaks into a wistful smile. The Grey Lady regales us with details of a trip taken with her husband three years previously to Alaska's Inside Passage aboard a cruise ship. Her son and his wife traveled along as well to celebrate their anniversary.
   "We had a wonderful trip, we did. Of course we cannot go back, health insurance is too expensive by half. But we did get it then. We thought I had beat it--we thought I was well"...her voice trails off, her grin slides away. She glances down at the tissue balled up in her hand in surprise as though it might have suddenly appeared out of nowhere, like this second bout of cancer.
   "Did you see Jan?" she asks The Gent, referring to another cancer patient they've come to know on this tedious journey.
   "No, no I haven't seen her in a few days," his voice is soft with regret. When a long term traveling companion on the cancer tour fails to turn up of a morning, it could be attributed to much more than missing the coach.
   "Oh she was on the bus tha' mornin'. She looks bad she does."
He looks away from The Grey Lady, over at something on the wall, shaking his head. Settling her rumpled self further back into the chair, The Grey Lady pipes up emphatically, "She's a very nice person is Jan."
   "We are all nice people in here," said The Gent as he shakes his silver head and looks down at the floor. "No one wants to be here but what can you do? You reach a certain age and cancer comes for you. And then you find yourself here; there is nothing else for it is there?" He looks at me sadly and then stares at his immaculate dark gray canvas deck shoes.

http://www.winningprogressive.org/winning-progressive-for-the-cure

   I smile gently and glance out into the corridor where a woman with pale white skin and no hair walks slowly past, hunched over a tote bag tucked under her arm. Here I sit, a cancer survivor, mute to the misery in my midst, knowing there are other alternatives which do in fact work--although not for everyone. But then chemo and radiation don't work for everyone either, hence the overall static survival rate for all cancers of just 45%, unchanged since 1985 despite new therapies and better targeted machinery; despite Susan G. Komen and pink ribbon shoppers, cancer marathons and over $1.7 billion annually thrown at this awful disease.
   I do not utter a word, remembering my own experience with my mother who died from side effects of radiation treatment before the newly refueled cancer could overwhelm her once and for all. I too had my own personal visit to Hell's waiting room in Spokane, Washington: Northwest Cancer Patient Care.
   Dim lights and soft, restful colors cocooned a lobby filled with cancer patients in various stages waiting for treatment: those whose acquaintance with cancer was newly minted by an oncologist, shocked faces looking around in a daze as if to say, "How the hell did I end up here?" The convalescent whose hard, determined look indicated they were fighting for their life in multiple rounds, lips pursed against the inexorable treatments stretching endlessly into whatever future they still had; and the victims (another term for patient according to Miriam-Webster's Thesaurus) whose lives had been subsumed by chemotherapy, sitting lifelessly in wheel chairs with bags of chemo drugs attached to an IV pole, dripping relentlessly into a port in their chests, draining away the very life it was configured to save, their bald heads covered in bright scarves--their battle flags.
   I will never forget how it felt to enter this mute world where cancer stalked us all. When I stepped back outside after receiving a confirmed diagnosis of ovarian cancer on a scorchingly brilliant August afternoon, the blue sky and bustling city seemed utterly surreal--too full of life by comparison with the stygian silence from which I had escaped.
   I know the fragile hope patients pin on multi-billion dollar, patented poison cures, fighting the tide of terror cancer brings in its wake. I have been here before, waiting with a loved one at the door of the radioactive vault. I am a cancer survivor who keeps quiet and says nothing, feeling like a traitor to the weary travelers sharing this waiting room with me. 
   Day three. While The Gent, the Gray lady and I are chatting, another patient makes his unwilling way into the room, accompanied by his wife. They sit silently, well away from the rest of us. He is clearly in the later stages of cancer. Shrunken and bowed, clothes two sizes too big hanging lankly from his now skeletal frame. Silver framed glasses overwhelm his pale, expressionless face. Sparse, thin, dark hair reaches out in long wisps across his skull. He seems to cave in on himself as he sits down.
   Next to him perches his auburn haired wife, handbag in lap, gripped relentlessly by white knuckled fingers betraying the cost of her control, face void of any expression at all. Each sits staring at the floor in front of them, still as statues. Undoubtedly he is in for palliative treatment--palliative meaning given to relieve and prevent suffering for those whose illness is terminal. Ironic when one considers the kind of suffering a bag of chemo and ongoing radioactive therapy can deliver...
   Les notices a strange feeling in his belly and gut now as we settle in Kev's car for the ride home. He cannot quite pin down a description but it doesn't feel good. We were warned he could feel nausea and a burning sensation in his bladder which warrants drinking a minimum of 2 litres of water daily to replace all the liquid being cooked away by the radioactive Gamma rays. Les isn't sure yet if he's tired from the treatments or the bloody alarm waking us at 6 am after fitful sleep in which he rises at least twice to relieve himself.
  Back on the boat I settle us both into our daily routine: a bowl of cooked whole oats for Les' breakfast, complete with mashed banana, cinnamon, clove, a drizzle of agave syrup for sweetness, all to help mask the unpleasant taste of Modified Citrus Pectin which makes the blood vessel and lymph walls slippery so loose floating cancer cells cannot attach to possible new tumor sites. He washes it all down with a glass of fresh squeezed orange juice in which a fourth teaspoon containing 1250 mgs.of vitamin C powder has been stirred. 
   From now on until 7 p.m. Les will drink a glass of fresh extracted carrot-apple juice every hour in which a half teaspoon of liquid potassium compound has been added. In between the juices he will down 20 pills which do various things to help him fight the cancer. I will write a separate post on this regimen later.
   He was given a tube of Aqueous cream by the radiographer, to rub over his abdomen as a means of combating the dryness and red burned spots on his flesh from the radiation. I read the label and discover it contains petroleum jelly and Sodium Lauryl Sulfate (SLS).
   Petroleum Jelly (think Vaseline) is a gel found floating on the surface of crude oil wells. Contamination from polycyclic aromatic hydrocarbons (PAHs), cancer-causing chemicals found in crude oil and its by-products, is possible with the its use.
   SLS is a known carcinogen in over 16,000 studies which point to its toxicity.  Used as a surfactant, detergent and emulsifier in literally thousands of products from toothpaste, shampoo, lotion, laundry and dish detergent, to shower gel, it is absorbed repeatedly throughout our lives by our skin--the most important and largest organ of the human body. How many hits does it take from the combination of all these products before cancer develops?
   Needless to say Les will not be using Aqueous creme on his irradiated bits. Instead we use the healing salve I made for him this spring out of Comfrey leaves tinctured in extra virgin, cold pressed olive oil, with Calendula, vitamin E, Lavendar and Rosemary essential oils. (To be continued Sunday in The Waiting Game: Part Two)

Thoughts? Feelings? Meditation? Rumination? Speculation? Reflection?..................Lets just call this post "hello everyone"

Mmmmmmmm....Well first again a big thank you for all your support.

Not sure what my feelings were just a couple of hours before starting this post. They ranged from disbelief to astonishment with a lot of fear mingled in. Loneliness has never been an option thanks mainly to Jaq but your good wishes certainly play a part.  My feelings now have changed because sometimes you have to sit up and accept "it is what it is" so now stand up and look for your route through "is".

So let me go back a week or so. The 13th was the MRI, 16th was the CT scan, and the 17th I had the Endoscopy. Over that 4/5 days everything seemed to be going swiftly although the 17th was not a good day with the enterologist confirming  the growth spotted by the consultant's initial exam was cancerous.

He said the partial obstruction of the bowel by this growth was the cause of my inability to dispose of waste in the normal way. Just like turning on a tap and expecting water we just take it for granted that what goes in will come out. I suppose in the absence of anything different occurring we just take so much for granted.

Anyway not having heard anything this week, we phoned the hospital only to find out the consultant/surgeon was on holiday. His secretary was also away and calls were taken by another department who made a note for the secretary on her return Tuesday next. After putting down the phone down my feelings went into overdrive. Sitting for 2 hours or so with all these thoughts going through my head my old self suddenly came through the haze of thought mist.

Solo boating for many years before I had the good fortune to fall in love with Jaq, I was always quite laid back with sayings like `what will be will be` and `there`s always tomorrow`. The latter was used when waking up to rain.

With the former in mind I decided the cancer will do what it`s going to do until the surgeon removes it. Unless any of you are handy with a scalpel then I`ll wait. My thinking is that it`s been growing in there for probably a long time and is unlikely to suddenly double in size in 2 weeks and if it does then `what will be............ If the worst happens then A and E (Emergency room in U.S.) will soon get me sorted with an emergency surgeon.

With my "there's always tomorrow" saying, the surgery can be done another day even though I did have thoughts of it being next week.

Now all these thoughts are coupled together with the fact I have no pain, just discomfort, and the fact that as long as I take a laxative everything leaves my body like a tap opening leaving no chance for Mr. C to shut things down which has in the past caused me enough pain  to bang my head on the bathroom wall. You do not want to experience that my friends. So until the time arrives for surgery Jaq is being wary of what I eat and is putting me on some herbs but I`ll let Jaq tell you.
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Of the 640 pounds of goods I shipped from the U.S., a lot of that weight included books. When I was diagnosed with ovarian cancer I read every book available in Neill Public Library (Pullman, Washington) which I thought was relevant to my situation. My university degree taught me how to engage in comprehensive, sound research methods. 

A few of the books that I purchased and used, in the order I found them are:
Living Proof: Medical Mutiny by Michael Gearin-Tosh
The Gerson Therapy by Charlotte Gerson and Morton Walker D.P.M.
Herbal Medicine, Healing and Cancer by Donald R. Yance Jr. C.N., H.M., A.H.G. 
Essiac: A Native Herbal Cancer Remedy by Cynthia Olson with Dr. Jim Chen and Christopher Gussa

After reading "Living Proof" I knew if Gerson worked for Michael Gearin-Tosh (deadly myeloma--death within 2 years of diagnosis with standard cancer therapies; he was still alive and healthy 15 years later) I too could survive. I used the Gerson Therapy combined with Essiac with the addition of Blood Root tincture to great success. I also took Modified Citrus Pectin and Chlorella and a host of other supplements required or recommended by Gerson.

One can find a load of info on the 'Net about Essiac--some of it accurate--and a lot of it inaccurate. The book above is the most comprehensive, accurate book about this Ojibway medicine used for thousands of years to heal cancer. It has undergone trials by Canadian nurse Rene Caisse under the supervision of several physicians. Rene refused to release the formula to any pharmaceutical companies because she knew they would appropriate this information, slap a copyright on it and sell it to suffering cancer patients. The formula belongs to the First Nations Ojibway tribe first and foremost, and Rene was adamant it should be freely available to anyone with cancer. 

When Caisse released some of the herbal product to Sloan Kettering Cancer Center in the U.S. they completely disregarded her instructions (after all she was A. a mere woman and B. only a nurse) and froze the samples prior to administering them for the trail. It didn't work and as a result SKCC takes every opportunity to inform the public that Essiac is snake oil. Yet President John F. Kennedy's personal physician used Essiac exactly as Rene Caisse instructed and healed himself of stomach cancer. I am a trained medicinal herbalist and I knew Essiac would work for me.

Modified Citrus Pectin--Every time we peel an orange there is a white pith under the skin which most folks discard. It is contains extremely potent chemicals which inhibit the ability of cancer cells to "stick" to other organs in order to form tumors and new growth sites in the process of metastases. In its natural form, citrus pith is a long chain of molecules which means our stomachs cannot process it and make use of it as one needs in this instance. Bio-chemists have shortened its molecular biology to create a short chain capable of being digested and used by our guts--a tasteless powder called Modified Citrus Pectin. 

Chlorella is a one celled green algae food product that is highly nutrative. It improves immune function in people undergoing cytotoxic cancer therapy (chemo and radiation). Chlorella increases macrophage activity, activates both T-cells and B-cells, and has shown anti-tumor effects. Chlorellan, a substance found in Chlorella, stimulates interferon production. Chlorella is also a whole food which stimulates the growth of friendly bacteria providing a probiotic effect, strengthening gut flora and resisting disease. 

A friend of mine was a nurse at a major Oncology Unit on the West Coast of the USA. She told me that she has seen many hundreds of patients come into her Unit--come and go and return again as they moved through chemo and radiation therapy and/or their cancer progressed. Those who survived and recovered nearly always used Chlorella as a part of their treatment.  

Finally and for free: cancer requires an anaerobic (low oxygen) environment in which to thrive. Deep breathing to pull as much oxygen into one's blood stream as possible helps. And DON'T eat sugar--at all! Cancer requires glucose for growth which is why there is no exhaustion like that from cancer. Those cells never die and they steal every bit of sugar/sucrose/glucose they can find to do replicate and grow. Don't feed the disease!!!

One fact is clearly known about cancer: no one survives it without healing their immune system. One can treat the symptoms of this wretched disease and sometimes remission will occur. Without healing one's immune system cancer always returns. These herbs and products have been ordered and will be delivered tomorrow. 
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Now I don`t know how you all feel about alternative treatments but all the reading I have done recently turns me right off Chemo and Radio therapies. My feeling of my short research is that a lot of medical folk out there feel it kills more than it cures. Not sure how all that poison going in to your body can be doing good. It is supposed to attack the cancerous cells but it can`t differentiate between the good and the bad so the way I read the medical people is it just wipes out your immune system so I follow what Jaq is saying.

I am interested to hear your opinions. Like smoking and stories of uncle Bob smoking 40 a day and living till 96, the "chemo sorted me" stories will come up. As we know there are always exceptions but generally lung cancer is common among smokers with few reaching 96, and from my readings chemo fails more than it works. Part of my deep thinking tells me I should avoid every medical aid other than surgery. 

So our minds are of one in that we will cruise on and when the appointment materialises we will turn around. Canal and River Trust have visited and are aware of our situation. They will issue overstay permits wherever we need to moor if we contact them as things develop.

Too much reading about the subject, too many thoughts and worst of all a lot of "what if's." I banished such thoughts from my life years back as they just stop a person from doing anything. Anyway just some of what is happening here on the good ship Nb Valerie.