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Friday, October 11, 2013

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)

12 comments:

Heather TakeyTezey said...

Hi Jaq,

That specialist sounds like (yet another) disgrace to the world of medicine.

Have you thought about going back to the GP and requesting to see another specialist at a different hospital? If you go in with that request, they have to give you a choice of referring you somewhere else.

I did it during my 4 years of hell. Several times! In the hope of finding a doctor who knew what he was doing. Eventually we did, he was from Europe.

My worst experience was lying in an "assessment ward" having seizure after seizure. The useless doctor insisted on giving me a drug that my family already knew was useless for me. He left me there dying, yes all my major organs were shutting down and I ended up on life support for several days. All because he didn't listen to my family who knew better. My mum said it was obvious he just didn't know how to deal with my condition so he should have listened to THEM.
My dad told me he was down on his knees at the desk in tears BEGGING them to do something. While my laid back Dave stood over my dad shouting the same thing. They were both ignored.
We were told the only neurologist in the hospital came on Tuesdays and Thursdays...............

I was never taken there again. An enquiry was held afterwards and guess what, every piece of paper that doctor had signed had gone missing from my notes. So he remained anonymous even though my family knew his name he denied ever treating me and there was no proof he did. Hello Dr RAJ. So this guy is still out there when he should've been sacked and struck off.
I was told I had an excellent case for claiming compensation from the NHS, but I felt it wasn't fair to other patients. So didn't bother. The only good thing that came out of it was the nurses there all had to be retrained about epilepsy and how to deal with it as fast response, forget assessment, straight through to ICU, as in other hospitals I'd been taken to.
The assessment ward is no place for a medical emergency. I'd like to think that the results of the enquiry saved at least one other life.
Finally I got the right treatment, care & meds. But it took years of shuffling from hospital to hospital.

I know it's not the same health problem, or situation, it's just something to seriously think about doing. Ditch the guy who's lining his pockets. Unfortunately it may mean travelling further but it would be well worth it.
The GOD complex or lining their own pockets plays no part in true medical care & attention the patient deserves.

Heth xxx

Email me if you need to know more xx

Ken and Sheena said...

as always, beautifully written and well observed. thankyou for taking the mystery of what happens behind the closed doors away. You should write a book about alternative cancer treatments, Jaq. I'd buy it. Regards to you and Les.

Sarah said...

Yes, I was going to say you should write these experiences into a book. The combination of knowledge, both first hand and academic; the palpable and so justified anger, coupled to such wonderful writing skill must be all but unique.

Jaqueline Biggs said...

Oh Heth how incredibly awful for you and your family. It may not be the same illness but epilepsy can also be deadly left improperly treated or ignored--as you know.

I wanted to ask for a change of surgeon and hospital but Les refused--he looked into it and we would have had to wait another two months at most for the transfer to be approved and the necessary appointments, etc. With Cancer it is felt one needs to move quickly. Les just had no faith in the NHS system coming through with a new surgeon in a timely manner. As it is this surgeon has kept us waiting for three months all told.

I am so glad you finally got proper treatment and it sounds like you have a loving, wonderful family to support you which is crucial for those with chronic or acute illnesses. thank you for sharing your story with me.
Take care!
JaqXX
JaqXX

Jaqueline Biggs said...

Hi Ken,
Thank you for your post. The reason I am sharing all of this on the blog is too demystify it and hopefully to generate conversations about this amongst our readers. There is such a cloak of secrecy around it all and of course cancer is a terrifying disease so most folks who've never faced a diagnosis will veer away from any discussion of it. I want folks to really consider this disease, and the obscene amount of money thrown at a supposed cure; to consider those who stand to gain in a cure and those who lose-- pharmaceutical companies and nuclear medicine for one.

I have started writing a book called "Journey of a Thousand Miles: Through Cancer to Wellness." I was waylaid form completing it by a brilliant English water gypsy who scooped me up and married me! But I am back working on it again.
Les says hi!
You and Sheena take care,
JaqXX

Jaqueline Biggs said...

Hi Sarah,
Thank you for your kind words. It is lovely to hear form you. I hope you and Bill are well. Hopefully next summer we will be cruising your way again.
JaqXX

Mike Griffin said...

Hi,

Things sound the same as when my mother received treatment in 1976!
Sorry Unable to talk this am to busy catching up with moorers coming back after the summer.

If you are still here in early December you can come to our Christmas party!!

Keep good.

Mike.

Jaqueline Biggs said...

Hi Mike,
It is always great to see your friendly, smiling face as you go about your business. thank you for the invitation!
Jaq and Les

Alison said...

Gosh, you two are such strong and amazing people. This story moves me everyday I read it.

I have read you blog for such a long time but I really commend the way you are dealing with this and opening everyone's eyes to other ways of beating this awful disease.

Your detail of the natural treatments has certainly taken my interest. My partner is a Seventh Day Adventist and totally against the conventional treatments for cancer and we have talked about your situation so much these past weeks. In fact there is someone at the Church who was diagnosed with breast cancer and refused the conventional treatments, taking the natural approach and thank God she is now in remission.

Take care and look after each other. God bless

Jaqueline Biggs said...

Hi Alison,
Thank you for your comment. After having trad GP's who would not help me with alternative cancer treatment, I finally found a fabulous primary caner physician. He was born and raised a seventh Day Adventist and believed in pro actively helping his patients to wellness and keeping them there, rather than treating the symptoms of disease. He was brilliant and I sure do miss him.

Thank you for following our blog.
Jaqueline and Les

Nev Wells said...

Hi Jaq & Les,

Again you write so well but this time it feels like a horror story rather than a love story. Les is so lucky to have you, you are his angel on earth, keep looking after him Your knowledge and treatments are being passed on to the young person we exchanged emails about, he is fighting fighting fighting so brave so humbling. This life is so precious but we waste so much of it. We should and will take lessons from what is happening to you and Les,

Take care and keep smiling it is the other best medicine,

Nev NB Percy

Jaqueline Biggs said...

Hi Nev,
I am glad to hear the knowledge we've shared and passed on is helping the young man in question. My heart aches for him as I sit here, knowing he is fighting for his life--a life yet to be lived to the full. I will hold him in my prayers too.

Humor is good medicine indeed. I have not shared the half of what Les has been through these past months and with the exhaustion and pain he finds it difficult indeed to smile or laugh though I do my best. Hopefully once surgery is over and he is actually mending full tilt, his humor will return.
Love to you and Rachel,
JaqXX

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs