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)

Blog followers

 This is just to say a big thank you to the 100+ blog followers. I think it only right you share a blog post on a blog you follow. Not quite sure why you all follow our writings but I`m pleased you do. Also thank you to all of you that read our pages but choose not to identify themselves as followers.

Look who popped by on their way south. James and Doug who float along on Nb Chance. They showed great interest in our new diet and the vitamins, minerals and supplements I am now taking.  Also the juicing machine caught their eye and they sampled Carrot/Apple fresh from the machine. Good to see you both again.



My Radiotherapy



 So now day 2 of the Radiotherapy and I snapped a pic of the the actual machine I am being treated on.
It is a Varian Rapid arc. As can be seen in the web picture below it rotates 360° around you with large exterior arms that move out each side like fingers.
It`s all very technical so try the FAQ link HERE to answer your questions.

These machines are made in the U.S. and cost about £4.5 million.    Also needed is the treatment chamber/bunker it is housed in at a cost of £1million the walls of which can be up to 8 feet thick.  At Mt. Vernon cancer centre they have a total of nine radiotherapy machines including the two recent additions one of which I am using. 

After the second of five sessions I have no side effects so far although perhaps these if any might develop after the treatment has finished.
Each session lasts just about 3 minutes, much quicker than the time taken to drink the six beakers of water  to fill my bladder before the session.
With all my sessions scheduled for 9am it means an early start to battle the traffic on the 22 miles journey. Thanks to son Kev this is all made easy with a door to door taxi service. I remember when I was Kev`s taxi. A big thank you to all the other family members who have rallied round with all sorts of help.

Moving up the Grand Union Canal

I didn`t bother stopping as trying to cut it would have caused the top end to float in the canal.


I have never noticed a Cygnet with a ring before. This led me to google swan ringing on canals and sure enough it`s going on all over the country. Having seen adult birds my thoughts were they had been ringed on the Thames during the annual swan upping. So there you are 65 years on this planet and still learning.

With family in the area Cassio bridge has been a regular mooring over the years. Although opposite a boatyard it is pretty quiet and good enough for a few days. Problem this time was the railway bridge up ahead that is wrapped in sheeting. After 3 days we learnt why when they started air blasting the rust and peeling paint ready for re-painting. the noise was un-believable, time to move.

The boatyard opposite did provide some entertainment before we left with three boats being either lifted in or out of the water.

 

So on through Cassiobury park and into Grove park. The canal turns sharply to the left under this bridge and the towpath changes to the left leaving our mooring on a fairly little used bank of grass.
This was a peaceful weeks stay and gave two of the grand kids a chance to visit.

Granddaughter Jordan managed to catch this crayfish. Not sure if it`s the native White clawed variety or the invasive signal. I guess in the absence of White claws it must be the Signal Crayfish.

 These gates are closed

but not watertight.

It`s in the Bag

Time has marched on albeit slowly which is not surprising as we are chomping at the bit to get poor MR. C out of my body. I say "poor" Mr. C because its days are numbered as are any offspring he may leave behind, although the Radiotherapy is meant to avoid this
.
We are not 100% convinced on this as the toxic allopathic therapies can and do cause secondary cancers. Our plan after surgery is a strict diet and a regimen of  vitamins, minerals, and supplements to create a densely woven safety net that does not allow cancer to initiate or progress.

Wednesday we attended a meeting with the stoma nurse who explained what would be happening during and after the Ileostomy surgery. She explained about the stoma bag and supplied a pre-operative practise kit, marking on my abdomen the position of the Ileostomy.

The idea of the kit is to get used to fitting the bag and looking after it during emptying and/or changing. The red piece in the picture is meant to imitate the stoma and sticks on you to try fitting the bag. They even supply a little pack of powder, that when placed in the bag with some water, provides one with the sensation of a filled bag. Wearing the bag for 24 hours offers one a good idea of  what one might want to change about your daily lifestyle. I have decided to wear tracksuit jogging pants with an elastic waist which will be easier than jeans and belt.

 If you want to see the piece of body art I am having created use this LINK.  If you really are interested in how my daily routine is going to change over the next few months then have a look on U-Tube for some "changing an Ileostomy  stoma bag videos." I have no problem with it all but think it best not to provide links.

So Monday starts five days of Radiotherapy with the surgery taking place on the 16th and all being well the stoma reversal operation will take place in about 3 months.

Jaq and I know a wonderful person stateside who has a permanent stoma bag and has settled in and got on with life. You know who you are and now we have something else in common in addition to knowing and loving Jaq.


A. in the picture on the right is where Mr. C is hiding and will be cut out.
B. is where the stoma will be joined to the small bowel temporarily until the colon heals.

Right of way closed? Oh no it`s not.

Coming off the Thames we had to make our way up the Grand union canal towards Watford and the medical people hoping for that first appointment to materialise. That was the end of July! Seems like years having been confined to one area for so long.

We were moored at Denham just above the deep lock for a few days and I decided to stretch my legs via the Denham country park pathway to the shops and return via the public footpaths across the golf course.
On going through the gate to the footpath I came across a security guard who informed me the path was closed for a golf tournament and entry was £15 ($23) to watch the golf. He said it was the Ladies masters and it was being televised......as if I cared. Golf is not my thing although if you knew your rights you could have watched for free.

My reaction baffled him as I asked where the notice of closure was displayed which also would have a diversion route attached. He had no knowledge and decided to call his manager who said he would be on site in 10 minutes.
After the 10 mins. passed  I told him to phone and tell him I was walking through the golf course and he could  catch me up if he wanted. No one came and as I walked away I glanced back to see people with backpacks, obviously walkers, being turned away. Such a shame they didn`t know their legal rights.

I decided to do something I normally don`t bother with and write to the local council responsible for the legal access to these paths. The reply took a while after the initial automated reply stating a reply would be made within 28 days but here it is.

 

Dear Mr. Biggs,

 

I read with great interest your report of Public Paths being closed across Buckinghamshire Golf Course during the Ladies Masters Golf Competition.

 

I can confirm that the organisers did not make any application to the County Council to temporarily close the routes across the site and I was not made aware of the event being held. In 2012 the event organiser did contact me regarding the matter and paid for a temporary closure, therefore, I am extremely surprised that they did not take the necessary action this year. I have contacted them regarding this issue as an offence has been committed under the Highways Act (1980). I have advised them of their legal duty when holding this type of event and asked that they now cover the costs of the closure which should have been in place.

 

I am pleased that you knew your rights regarding this matter and insisted on being permitted onto the site. I am sure many other people had unsuccessful visits to the area that weekend which is a great shame particularly as the event organisers were aware of their duties with regard to complying with the legal requirements of Rights Of Way law.

 

Thank you for bringing this matter to my attention. I will monitor this event closely next year.

 

Kind Regards,

 

Corinne Waldron BSc (Hons)

Area Rights Of Way Officer

South Buckinghamshire

Buckinghamshire County Council

The nice thing about Denham was spending a few days in the company of Sue and Vic from No Problem. This was back when they were solving the overheating problems their new engine was experiencing. I think I speak for everyone when I say how pleased we were to see the modification setting No problem free to cruise once again.
We miss you both already.






Now many must remember Arthur Daley that lovable rogue from the TV series `Minder` that ran from 1979-2009.  George Cole (left of pic)  now 88yrs of age played Arthur Daley who was always dreaming up some get rich quick scheme. Most of his dealings were very dodgy and most of the products he sold never worked properly.
So if you were to hear of a boat trip company bearing his name you might be a little wary. Well I did chuckle to myself when the owner Josie invited  me aboard to look around. I decided not to mention George Cole as either she was of an age not to remember the series or countless others have already mentioned it.
Arthur daily boat trips LINK
Many years ago when I was making deliveries in North west London accompanied by my then young son Kevin we came across the Minder film crew on location. The scene was being filmed in an engineering factory very close to the dis-used building that was used as his lock up so seeing Minder being filmed was a common occurrence for me.
Anyway George was a pleasure to speak to as he rested in his trailer and invited us both in for light refreshments and was most interested in my self employment as a delivery driver asking many questions. A very unpretentious man. Sorry to see his retirement is being disrupted. LINK
 

 

Winter moorings

Like many other boaters we just recently had an e-mail regarding winter moorings for continuous cruisers. For readers not familiar with C/cruisers, it is by definition a boat that is always on the move; not stopping longer than 14 days in one place. Nb Valerie comes within this group.

In the past seven years I and now we have never taken a winter mooring, preferring to move through quiet canals and enjoy the winter scenery.
There three types of winter mooring permits: general towpath, selected visitor moorings, and central London sites with length of stay ranging from 1-5 months.

1.  The selected moorings out of London would be £8/9 per meter per month. Nb Valerie is 17.6m so approx. £140-158 per month.
2.  The London sites vary between £10/16 p.m.p.m so Nb Valerie would be £176-£281 per month plus you have to breast up (moor alongside) another boat.
3.  Last option is the general towpath permit that enables you to moor all over the system with some exceptions, both the above being two of them. This would cost between £5/8 per meter per month.
So just as an example for Nb Valerie the cost of a 3 month permit for each option is;
1. £422           2. £686               3. £343

Now mooring up over winter is not for us but I can understand why some that do. We prefer the freedom continuous cruising gives us to roam. Some folk like to be close to say shops or a transport link to a town or village and perhaps be near services.
If we had to curtail our cruising over winter then my choice would be the general towpath option No. 3.
With all the options I think most boats need to move for services, water, rubbish, and sanitation  so one won`t be stationery for the whole time.
With option 3. you could stay in one area, say near family, but still move short distances and stay past the usual 14 day limits then turn back to where you moored  previously. During these movements you could--with careful planning--pass services and shops or at least transport options to them. You also have the choice of not being moored in a long line of boats.  All options mean being on the water in winter and with a nice fire you can be warm in any location.

Anyway overall I think the Canal and River Trust have made a good effort to accommodate boaters wishing to moor over winter.
Our situation at the moment means we are forced by my health issues, to stay in one  area. C.aR.T. are aware and are allowing this. Perhaps in the future they might ask us take a permit mooring; only time will tell. For now everything is just bridges, some to cross or pass under, but all of them can only be done one at a time.
Speaking of my health, the pre op check up Wednesday went well with Blood test and ECG. A chat with the Enhanced Recovery Nurse told me they will want me up the day after the surgery. Try and stop me was my reply. The Pharmacist wanted to know of anything other than food that was going into my mouth with instructions of what to stop pre op. She also gave me the bowel prep to take on the eve of surgery. A few other checks on breathing and allergies ended the two hour session. All that remains is a chat with the Stoma nurse who was not available and another blood test within 10 days of surgery. All systems are go.
This from Jaq: Les' blood sat rate (saturation rate of oxygen carried in the bloodstream) went up from 60% in August before we began any alternative treatments, to 99% this week. This is due to taking Chlorella--a blue/green algae. This is a tremendous improvement for which we are both thankful. As I think I've mentioned previously, Cancer likes a very low oxygen environment. I didn't know about Chlorella when I was going through cancer treatment. I had to walk two miles a day doing deep breathing exercises the entire time in order to improve my blood sat rate from 43% to 99% over three months time. Gotta' go--it's time to make the next juice.

Coming off the Thames and Mr. C the lodger

Sitting here on a lovely day, the washing line is set up on a fairly wide piece of grass towpath and two machine loads are drying in the mid afternoon sun. We both sit at our laptops; Jaq is answering e-mail and I, having checked in to the canal forums, am now typing this. For all intents and purposes it is a normal enough day on board--but for our temporary lodger Mr. C.  Just three weeks today and he will be gone. Good riddance as well; just turned up out of the blue, paid no rent and expected me to give up everything.
It is said this unwelcome guest shows up years before it is discovered and attempts to take over your life.  Mr C. might have got his way if not for my secret weapon, my little Alaskan who can be as ferocious as a grizzly bear if needed. Thanks for being there Jaq.XX
So the plan was not just to wait for the scalpel wielding  bailiff to evict my lodger. We decided to starve Mr. C. and make him less likely to cause problems pre scalpel. I must be honest at this point and say that if I had still been on my own nothing in my diet would have changed and the lodger would have caused havoc in the plans to remove him.
He has been deprived of anything that might help him settle in and disrupt my normal day to day shall we say movements and cause Mr. Scalpel to adopt a different attack plan.
It seems he is not happy with his diet and has kept a low profile for a while now, I don`t miss feeling his presence and know his days are numbered.
Once again life is good although a post surgery battle to good health is yet to come but we are ready.
Ok so I`ll never be a writer but my mood just led my fingers across the keys.

Before I go on my thanks to you all for the good wishes and comments, it means a lot and gives us both an incentive to blog about this unusual cruise along the wet road.

Today we had our 4 yearly boat safety test (£145 $215) carried out and the boat passed with flying colours. Although on board we have both a smoke and carbon monoxide alarms they are not compulsory. WHY NOT?  Strangely one regulation is that all fuel filling points must clearly identify the fuel in use. So if you put petrol in a diesel engine it will cause problems and a big bill, I did this on a van once. Is this more important than dying in bed because you had no idea the boat was full of  smoke or carbon monoxide.
Tomorrow I have to go for a pre-operation check up. This will be to check general health and get to meet the Ileostomy nurse. After that we have a week and a half before the Radio therapy starts.

The following pictures were taken as we came down the tidal section of the Thames from Teddington to Brentford. It was a very high tide caused by the moon and sun`s gravitational forces and a great deal of the towpath was under water.

This was our last mooring at the rear of Desborough Island Walton upon Thames. I liked this mooring as I found a fiver ($7) laying on the grass after we moored. If you lost it and can describe it you might get it back........but then again.

Teddington lock is big (650`x25`) but not as big as Chittenden Locks in Seattle. The large one is 80` wide and 825` long. Blog post.

Notice the little girl paddling in the pub garden.

 

 

That`s all for now. I must say it feels nice to blog something boaty but by the same token I know many of you want the medical updates and I thank you for your concern.

At My Wits End...

"If you're going through hell, keep going."  ~Winston Churchill

   We waited all last week to hear from the surgeon's office about the date for Les' surgery which must take place the week immediately following the radiation therapy. As usual over here, no one attempted to contact us and we had to call around to the bowel cancer nurse Linda, who was out all week and who couldn't find her bum pack with both hands and a flashlight.
   This is the same nurse who stood mutely watching through the surgeon's initial rude and arrogant meeting with us on September 6th; who then took us down to the MacMillan Cancer Centre near the Hospital entrance to have a chat with us about Les' very personal health issues and prognosis in front of two strangers--MacMillan community volunteers who hung on our every word. Linda it was who warned me not to engage in research on the Internet--just stick with the MacMillan website. 
   The very same nurse who called Les back on September 16th just to find out how he was feeling about the "radiotherapy" (I refuse to call it that. It sounds so innocuous--as though Les is going to sit in a room with some head phones on listening to deeply moving and cathartic music like Gustav Holst's The Planets, or the Wagner Ring Cycle every day for a week. I will call it what it is: radiation therapy) and a follow up surgery.
   Nurse Linda spent fifteen minutes repeating herself ad naseum about "how much liaising there was to do between the two hospitals" as though it might take some help from Parliament to make it all fall into place, but she had not a clue about radiation therapy times or surgery dates; she wasn't privy to whether or not the surgeon planned to do the Ileostomy and the removal of the tumor and bowel re-section all in one go or in two separate surgeries. Nurse Linda was in short, BLOODY worthless at actually imparting any meaningful information at all.
   Les left her a message this past Friday morning and she returned the call Friday afternoon to say she'd been away all week and she needed a few minutes to get on top of things and then she would get back to us. A few minutes later she rang back to say Les' radiation therapy appointments had been changed--instead of starting this week, they would commence on October 7th and surgery would take place on October 16th! Mr. H. who has been on vacation the week before last, returned to find there simply was no room in his calendar for Les surgery until then.
  What Americans don't know is that over here they have a two tiered system: there is the National Health Service which covers all British citizens, and private practice for which one may pay for out of one's pocket or with private Insurance; in which case one can jump the NHS queue and be seen right away--most likely by the same doctor one would see through the NHS. I wonder how many private payees have jumped this queue to line Mr. H's pocket while Les' tumor continues to grow. 
   I am appalled no one even thought to contact us personally and let us know about these changes. Our son and daughter-in law had to juggle their calendars, and arrange for time off work to take us to the scheduled appointments. 
   I have a very jaundiced eye toward American health care from my own experience but the ineptitude I have personally witnessed over here via the NHS makes U.S. health care look compassionately brilliant by comparison.  
   What's that you say?? "Yes, well but we don't pay for ours." Stop saying that!  I bloody well mean it. STOP SAYING the NHS is free because it's not. It is free at the point of service--which means you pay through the nose for it out of every pay check but you don't pay for services at the time of delivery. Les worked from age 15 to 58 and believe me he has paid for the health care he has received and the actual care he should have received but has not, due to incompetence and lack of anyone really giving a rip about high quality health care delivery in this situation. And they will keep getting away with offering inferior service as long as Brits put up with it as their due because after all, "it's free"...
   I either rant here, or I will have to remove the surgeon's liver with a cocktail fork after he completes Les' surgery--if he ever actually gets 'round to it. All the other appalling, inconsiderate, incompetent things that have happened to Les throughout this debacle will be detailed in my book I started writing about my own journey through cancer. Now the book will have at least a chapter detailing Les' journey and possibly that of our Canadian friend B. who follows our blog, in order to offer a more comprehensive look at this agonizing experience from country to country.
   Rant over. We are choosing to look on this extra time as an opportunity to work on getting Les stronger physically and better able to withstand the radiation treatments and come through the surgery with a good outcome and

healing. He has been on the Gerson intensive therapy diet. We purchased a Green Star G-2000 juice extractor and he has been drinking very high quality juices throughout every day.
   Les takes Chlorella tablets to enhance the oxygen levels in his blood and raise albumin levels as well. Cancer patients typically have low oxygen levels which is what cancer likes. Albumin is a protein found in the bloodstream. According to the National Institutes of Health low Albumin levels signal malnutrition and is a marker for higher mortality rates of cancer patients. Chlorella is a blue-green algae used for preventing cancer, reducing radiation treatment side effects, stimulating the immune system, and improving response to flu vaccine, increasing white blood cell counts (especially in people with HIV infection or cancer).
   Les is also taking Modified Citrus Pectin which significantly inhibits the adhesion of cancer cells to the endothelium which are the cells lining the blood and lymph vessels--the pathway by which cancer metastasizes.
He is taking large doses of B vitamin for energy and high doses of Vitamin C which not only fight cancer but promote wound healing. 
  This week we will add in supplements such as Glutamine which accelerates healing after radiation therapy, increasing healing of irradiated intestines and decreasing systemic infections resulting from bacterial translocation; Woebenzyme which is an adjunct to radiation therapy which inhibits metastatic cancer. These enzymes modulate the immune system, activating macrophages which cause phagocytosis and release tumor necrosis factor alpha, stimulating lymphocytes to penetrate tumor sites, eating the tumor cells. 
   We are also using Co-Q10 which removes toxin, protects the heart muscle against damage by radiation therapy and high doses of Adriamycin (antibiotics often administered as a chemo therapeutic agent).
   Finally we are adding in Low Temperature, 100% Cross Flow Microfiltration (CFM) Whey Protein which acts as a barrier to to further bowel invasion incidences of cancer, and inhibits tumor growth. 
   All of this is in addition to potassium supplements to engage changes in Les' bio chemistry at the cellular level, and twice daily doses of Essiac herbal decoction with blood root tincture to cause tumor cell necrosis (death). 
   Since we began the Gerson therapy diet, juicing, Essiac, Chlorella, Modified Citrus Pectin and potassium supplements almost a month ago, Les' energy levels have climbed to the point he felt well enough to split wood the other day. He also reports that before we started this regimen he could feel the tumor in his rectum all the time. It felt like someone had their finger up his bum. Lately he cannot feel it at all. I am doing everything in my power as a Green Witch, medicinal herbalist and a healer, as well as an academic researcher, to ensure Les survives.

The Treatment Plan:

“A further sign of health is that we don't become undone by fear and trembling, but we take it as a message that it's time to stop struggling and look directly at what's threatening us. ” ~Pema Chödrön, The Places that Scare You

    We met with the radiographer and the Oncologist yesterday at Mt. Vernon Cancer Centre. They briefly went over the short term and long term side effects of radiation therapy and Les had to sign a document which stated he had been informed of such. 
   Possible short term side effects: diarrhea, a mucous discharge from the rectum, pain and tenderness at the radiation point and rectally, frequent urination with pain, pain passing stools, tiredness. 
   Possible long term side effects: persistent diarrhea, fibrosis and stricture of the bowel, difficulty passing stools, impotence, second line cancer.
   Les was led away for a CT scan while son Kevin and I sat in the waiting room amongst the other patients and families. Those waiting to receive radiotherapy often had a thermos of hot water from home. One woman had her husband's water thermos tucked under her armpit to warm it. This is necessary because every time they irradiate you, an empty bowel and a full bladder are required.
   The water on offer at the centre is chilled quite cold and drinking a large amount of it causes a drop in patient temperature and shivers which makes it difficult to lay perfectly still during the radiotherapy which is essential. One would think the specialists at this centre would ensure their patients have access to warm drinking water on the premises without having to cart it from home.
   Still others were waiting for more chemotherapy, their bald heads, pasty white complexions, and lack of energy marked them out from family members waiting as well for the coffee bar to open. 
   And what does the hospital coffee bar sell? Candy bars, chips, sandwiches made with white bread, coffee, tea and soda pop. I think it is negligent at best and criminal in the worst sense of the word for the hospital to feed their patient's disease when each one is fighting for their life and it enrages me.
   I frame this in light of a conversation earlier that morning with Les' Oncologist Dr. J. He was distant and preoccupied and looked quite tired as he sat down to speak with us. After he laid out Les' treatment plan I commented that statistics indicate at least 70% of all cancer could be prevented by a proper diet (like that of Gerson as an example). The Oncologist slumped forward in his chair, ran his hands over his head and replied without looking us in the eyes, " Oh, I would say a lot more than 70%. In fact nearly all cancer could be prevented by a decent diet." Even his doctor gets on him for eating things he knows are not good for him.
   We have yet to hear from Mr. H., the surgeon. He was on vacation last week. Dr. J said he would contact the surgeon's office and get it sorted. According to him, Les will undergo radiotherapy every day next week and then the following week Mr. H will operate and create the Ileostomy, remove the tumor and re-sect Les' bowel all in one go. Les will be hospitalized anywhere from 7-10 days and then released to come home if there are no complications. 
   After 3-5 weeks we return to visit the oncologist who will review any further recommendations for postoperative chemo/radiation therapy based on what the surgeon finds.  

Waiting for Monday

Back to the hospital Monday for  a treatment planning appointment with the oncologist. It seems they might do another CT scan and mark out the parts of my body that the radiotherapy will treat. The marks (tattoo dots) will be so the treatment area remains the same over my 5 days of therapy. Also it will be a chance to ask more questions about the surgery.

All this is what I have read on many many web sites so if anybody has any first hand knowledge I would be grateful.

Lately I have been having some days when I feel as though nothing is  wrong with me. I feel it might be the change of diet based on Gerson and some other herbal treatments are doing good. Anyway surgery is needed for sure but I am for sure feeling better.

I am sure Jaq will go into more detail in the future when the time is right.

Rock `N` Roll is for sale

Well it was with great relief we discovered George and Carol are not about to desert the canals but are in fact going to change to a wide beam boat.

 

 

Lots of pictures HERE



Lots of reading HERE
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Also still for sale UCCELLO
 Full details are HERE
Another excellent boat that has been in the care of  Derek and Carrie.

Look back at the Thames trip plus latest news

We had a phone call yesterday to say they are going to coordinate the treatment so the surgery follows closely to the end of the Radiotherapy. My questions were as to what surgery do they mean.

Will they just fit a stoma first to avoid a bowel blockage and if so when will the tumour be removed?.
Will both of the above be done in one surgery?.
The answers we are told will be decided in the next few days. It just seems to be dragging on and I think it should have been operated on at least a week ago. I really don`t want something growing inside me. Am I getting panicky or does it normally take this long?

Day to day life is not to bad although some days are better than others. Tiredness has become a daily occurrence and the bloatedness becomes a worry until things start flowing again. Biggest worry is that it all stops before they do the surgery.
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The blog post last week featured a post box on Sonning bridge. Sandra commented that the BBC had it on their local news. The BBC has a video of a reporter trying to post a letter from a narrow boat.  It also features in the Daily Mail.
BBC LINK             Daily Mail Link

Looking back through the pictures on the Thames I found this tree that had during it`s

life battled with metal railings and won. Some of the metal rods have been swallowed by the tree.

 The lock keepers shelter from the sun. I think it would change canal cruising for the worse if we had assisted passage at the canal locks.

 One way to travel even in the pouring rain.

 Every now and then something big comes along to remind you this is a river not a canal.

 A young deer came within twenty feet as we sat by a diesel pump in a marina on the R. Wey.

 Windsor has two stations, Windsor Central and Windsor and Eton riverside. They both opened in 1849 but the Great Western Railway`s Central opened just ahead of  the London and South Western`s arrival at riverside. Both were used by Queen Victoria and gave access into London but the most interesting is Central station pictured below. Now re-named Windsor Royal Station it has mostly been given over to shops and restaurants although the structure remains owing to the listed status of the building.

 My modern day picture without the colour shows the building much the same as 100+years back.

The all wood ticket office is now a tourist information centre. Just look at the Victorian craftsmanship that built it all those years ago.

 A young pupil of Eton College in his 3 piece tail suit. Fees now total £32k ($48k) per year. FEES

 I wish the water points on the canals were like this.

 

 

The Swan Uppers on their way up the Thames. One lock keeper said it was just a booze cruise nowadays with a few Swans not quick enough to escape  a few inebriated men in funny costumes.