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Wednesday, August 17, 2016

When the Going Gets Tough...the Tough Get Going

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” — Lao Tzu

The quote above comes to us thanks to Ken on NB Dogma. It is perfect and he offered it up to us at just the right moment. 

This is just a quick overview before I get started on my day.

Monday we met with the junior doctors on the Oncology team at my insistence because they come around in the morning when I am not there and Les' head is fuzzy from the Oromorph so he cannot remember everything they tell him. I had a couple of pertinent questions I wanted answers to so I emailed the team liaison Monday morning and requested a meeting when I arrived at hospital. The conversation went like this: 

Two consultants showed up at Les' bedside hemming and hawing about “possible bone thinning cause by the first five days of radiotherapy Les underwent back in 2013." 

I asked, “So Les had a second MRI this past Saturday. Did it show anything different from the first MRI he was given at Stoke Mandeville hospital on August 2nd?” 

“Nope,” both consultants shook their heads, sad faces moving in unison. 

“So why is it that Mount Vernon is dragging their feet on getting the physics data over to you folks? Should someone else contact Mt. Vernon and see if a fire can be lit under them?” (The physics data is I am told, the actual fractions of radiation Les was exposed to each day back in 2013. This has been the main stumbling block for the oncology team at the RFH for four weeks now, so we were told. Supposedly Les had close to 43 fractions and 45 is the limit so there may well be nothing they can do for Les short of chemo which he will not do as it does not cure anything but can certainly kill him quicker than cancer will.)

“Oh, well no. We’ve brought in a bone specialist from Stanmore to review all of your husband’s scans and his file. What we are seeing is something that we cannot quite pinpoint and without knowing for sure what we are seeing we cannot safely go ahead and give your husband any more radiotherapy to ease his pain.”

“What do you mean by the term ‘…what you are seeing?’ I thought the MRI was a definitive answer that this is bone mets from the colorectal cancer, which should rule out the bone thinning you all thought might be the case. Are you seeing something else?”

“Well.......there is a possibility what we are seeing is another type of cancer in the area.”

“What type of cancer do you suspect?”

“Well.......sarcoma, but that is very rare and we don’t understand how it could be there.”

“Ah, well Les was required to sign a statement before undergoing the five days of radiotherapy at Mt. Vernon which stated he understood that the treatment could case second line cancer at some point in the future.”

“Oh no, no, no. no, this couldn’t possibly be caused by his treatment.” And then they left.

I knew there was something we weren't being told! I could not figure out why we had been given the same vague statement repeatedly for over a month and a half now. At some point the Oncology team at the RFH knew what they were seeing was in all probability a second line cancer and they were stonewalling us until they had a more exact answer. This is the problem for patients you see. If you don't know which questions to ask, then you will never get a direct answer. It was my probing question about the MRI’s showing no differences and my pinning them down with their own answer: nope. No change; well then doesn't that mean we have a definitive diagnosis of bone mets? which backed them into a corner and made them come clean with their exact concerns. 

The trouble is patients don't know what to ask, so they seldom get the answers they need until the last moment when the Oncology team is assembled and ready to rush the shocked and dazed patient into the treatment modality.

Monday evening I was told a team meeting had been scheduled for 1 pm Tuesday so I arrived early to be sure I didn't miss it. Les and I discussed the questions and concerns we wanted raised so Les was ready. They finally came around at 4:30 pm. The same two women consultants as yesterday and a new face--a man, presumably he had more authority???!! The man whose name is Todd, said: 

"We've reviewed all the scans, and we've called in an orthopedic specialist from Stanmore hospital to review them. We are still waiting for the information from Mt. Vernon but the folks from Stanmore are on the case now as well so we should have it soon. We suspect what we are seeing is a second line sarcoma and we need to be sure." That last statement was slipped smoothly in on the end. 

Les:" A biopsy to my spine has been mentioned. What good will that do me? If it is bone mets or sarcoma what difference does will a biopsy make?"

Todd: "Well it will make a difference in how we treat it, and in what medicines you are given."

Les: "What do you mean by medicine? Do you mean chemo? Because I won't have chemotherapy."

Todd--taken aback by Les' statement--as if he had offered Les a lifeline and Les was choosing to throw himself off a cliff instead: “Well, it is too early to make any choices about treatment yet when we don't know exactly what we are looking at. So let's leave this conversation for another time. We are going to discharge you tomorrow. Once we have a definitive answer from Stanmore we will be in touch and you can come down for a meeting with us so we can get treatment underway." 

As it stands now we are likely looking at cancer caused by the treatment given to Les to "cure" his cancer to begin with. But Oncologists see no illogical fallacies or discrepancies in this scenario. They shrug their shoulders and tell patients: "it happens sometimes." Good luck getting any accurate stats on how often "sometimes" occurs. Death caused by treatment is known as iatrogenic death. Those figures are folded into the general cancer death population figures which handily obscure the actual facts. Just remember though...currently fifty percent of all cancer patients die, supposedly of the disease...

Sunday was a very tough day for me. It is the first day since we knew for a fact Les was dying of cancer that I was on my own on the boat. It was a harbinger of all the days waiting out there ahead of me after he dies. I spent most of the day crying in fits and starts, although it started off brilliantly with a visit from single handed boater Kath of NB Bobcat. She is heading south, coming down from Chester and has been looking out for our boat all along the way! She breasted up next to NB Val and had a cuppa with me. Kath cried as we talked about Les, tears spilling out of her lovely pale blue eyes. I was okay until I read Les’ blog which he posted late Saturday night. Anyway I am making a list of topics to write about when Les is gone; widowhood things like “First kill your own spiders,” and “Jackie O Sunglasses.”

I received a wonderful email from one of my Hospice instructors formerly of Pullman. She is a brilliant and compassionate teacher. She follows our blog but never comments. She sends brief emails when her support counts most and they are a deep and resounding hug from afar. Here is what she said: 

As you know, dear Jaqueline, all is well at the deepest level, and I am grateful you know that love transcends death. May the days you and Les yet have together "on the boat" be brilliant, blessed, beyond the moon. And may he go gracefully, peacefully forward...
much love,

I washed all the curtains Monday and hung them back up to dry while I was gone to London. Tomorrow I will wash all the throw blankets and yesterday I washed all the windows, the boat roof, stern area and well deck in the front. Les may return and find NB Val unrecognizable! It has been months since we’ve had the time or the energy to do anything other than the most basic daily chores.  

I must go now and get myself sorted before heading out on today’s journey down to the Big Smoke. My baby is coming home today! We will sit on the bow in the sunshine and sip our iced coffees. I will fix steak fajitas for dinner tonight. Tomorrow Mike W. is taking me to Tesco’s and we will have roast chicken dinner and fresh apple pie and watch movies on Netflix, while we come to terms with this current scenario. If the weather holds we will cruise off somewhere quiet for a couple of days and begin going through the boat from stem to stern, while I make notes of every system on board, how it works, what parts are involved with part numbers, and sources, and what things to keep an eye on; any maintenance invovled and how to go about doing it.

In the meantime I offer my deepest gratitude and thanks to everyone who has commented on Les' post with such great love and friendship. Deep thanks as well to the boating community--both locally and spread out across the cut, for letting me know in an unobtrusive but loving manner that we are cared for and watched over; that someone is available if and when we should have a need. What you offer us is priceless. It is the true face of loving kindness: humble words and deeds in time of greatest need. Much love to our family on both sides of the world, for staying strong with us on this toughest of journies.

Love Jaq aka Momma/Mim/Nanny Jaq xxx

Tuesday, August 16, 2016

Comments reply

Thank you all so much for your comments they really do give Jaq and I a very warm loved feeling.
The boating community is I think quite special be they leisure or liveaboards and not forgetting those never having stepped on a boat but who just enjoy following others adventures and walking the canals and rivers. Help has come from all sections not forgetting Jane a volunteer locked who helped us down the Stoke Breurne locks. Thanks everyone.

Well still awaiting decisions on what will be palliative treatment as talks are now going on with Stanmore Orthopaedic hospital and another bone specialist unit.
When we get news and family have been informed we will pass news on to you our second family.
After leaving hospital I intend to get some blogging done but my pictures are on the laptop and big fingers on phone is not easy.

If you want to learn anything from my experiences can I offer the following.
Don't put off getting help from nurses be they attached to your GP area or hospice, they can open up quickly other avenues of help.
Also even if you feel healthy but have been toying with an idea of a change in life style or  special trip please don't put it off, life can be so short. There are two special people who I keep nagging to make a trip down that west coast, you know who you are please do it.
As I look back to when I decided to retire after Valerie passing I just give thanks I decided to change things then and not wait till day 65. At 68 I haVe so far, still counting, had 11 years on the boat and a special 5 years with Jaq.

Sunday, August 14, 2016

Les here

Hello everyone. After nearly three years of fighting Mr. C. I have to admit he's getting the upper hand but with the castards worldwide record of causing pain and misery that's not surprising is it.Jaq and I have spent just a little short of three years chasing our Mr. C. Around my body and I think we were successful because the coward has now gone deep into cover by seeking refuge in my Pelvic area and pressuring the nerves to my back and legs. So now I face as of a month back an estimate of 6-12 months to live.Yes I'm dying, no other way to say it and please don't be frightened to say anything that you think might upset me. I've told many who have visited no words or phrases are banned in my presence.  Take a look at the picture taken Sunday 14th August as I type this. Do I look to be just about ready to check out of this world, no not just yet.
My last post was to the effect of being unable to blog because of back pain and this is still the case only now we know the cause.

As you can see I am sitting up in hospital typing this but have Morphine via a slow release tablets and by mouth on demand. I came in here a couple of days ago so I could have another MRI scan to see what my best options are for palliative one off, for now, radio therapy for pain relief and of course to get the exact dosage of slow release Morphine tablets decided. Hoping the therapy will be decided Mon\Tues and I can get home.

How I ended up here is another story. So to start a quiz question. " How many ambulance personnel does it take to get a boater off a boat". Answer  7+ 2 response cars and an ambulance oh! not forgetting a Southampton sling. Not sure that name is correct and not found it on the web. What it does is replace a normal stiff spinal board with a canvas type
blanket that seems to be filled with Velcro blocks that are pushed close to you whole body sticking together to form a mould around your whole body.  It is strapped closed and you can be tilted in any direction without your body flexing. Imagine a normal board where you lay flat this thing enables them to tip me head or toes down or on my side and I never moved at all, like you had been soaked in plaster of Paris. It was developed to carry patients up twisting stairwells in ships engine rooms or stairs similar to those say in a lighthouse.

Not having the pain under control lead to an ambulance being called that resulted in a car and paramedic who was concerned of pressure on my spine so called for the ambulance to collect extra staff because of the tight area in the rear boat bedroom. It was decided to send for a car to collect the blanket device.
On my side through the narrow corridor laid across the cooker and the back of the dinette sideways through the front doors and straight onto the stretcher and I felt no body movement at all.

So an MRI scan led to Stoke Mandeville hospital entering into discussion and sending images back and forth with my pain relief increased I returned home late evening. The following lunchtime the Royal Free in London who have been looking after me for sometime phoned wanting to admit me for tests and monitoring plus another scan. At least I can with just some discomfort sit still long enough to read and type this.

We had cruised as far as Gailey on the Staffs and Words canal before I kept getting strong urge to turn back south. This was before on the advice of the osteopath I contacted the Royal Free who arranged another scan. 48 hours after which they phoned with the news and an appointment for Oncology.

So a lot of travelling but a lot of help from the boating community was most welcome with just Jaq able to do locks while I steered it was OK on long pounds but my pain increased and Jaq put out a call for help while I was laid out on the folded down dinette.
We had Arthur doing a very long stint of two flights helped by his daughter, Ken and Sue, Jennie and Chris then Adam, all boaters. Jaq still has to have her other knee replaced as it's getting worse with all the extra work looking after me, again friends have come up with suggestions to make this happen as it will not be near where we are now.

At the moment we are on the southern Grand. Union and have a mooring arranged by friends while the boater is cruising at least till end of August perhaps longer.
We are connected with the GP who I've had since the bowel surgery plus the nurses and also the visiting Ian Rennie cancer hospice nurses. Some might think it's a bit early to be thinking of hospice services but you are very wrong.

 These two sets of nurses work together and can arrange changes of medication without my having to step into the surgery and within a few minutes they can get through to your GP.  and get new prescriptions without you having to make a GP appointment.
They also arranged for people to come and see what they can do to make movement around and in and out of the boat or perhaps your house. Hoping to get a stool or seat to fit in shower in case the legs weaken as they have once or twice, not a lot of space to fall and avoid something to hit if you fall in a boat bathroom.
So I do encourage anyone in a similar position to get known via your GP to theses angels.

Sorry to have gone on a bit and perhaps in the near future I can do some more boating blog posts. Not sure if I missed anything but ask what you will openly or if wanting anonymity use e mail.
The view from the 11th floor here is to the east and takes in the Shard, St. Paul's Cathedral and Canary Wharf plus a few city sky scrapers. North East is Parliament hill and the edge of Hampstead Heath. I can also see the Olympic stadium.

A bit woozy with all the meds so hope it all makes some sense.

Tuesday, July 19, 2016

There and Back Again: Traveling Down to London Town

"Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing." ~Clive James, Australian author, critic, broadcaster, poet, translator and memoirist

WARNING! In terms of the dance of humor, this post probably rates as a light tango. If you do not appreciate sarcasm and dark humor spiced with a side of swearing please skip this post and move on to something else. Before reading please start the music video below as an accompaniment. This post is rated PG and has Les' blessing.

      On what was surely one of the hottest days this year to date (my Fahrenheit temperature gauge read 90 degrees yesterday evening at 6:30 p.m.) we rose at 5:30 am with Les' morning medicines, and were off up the road by 7:45 am to catch a small train to another station to catch a fast train down to London Euston. We walked hand-in-hand out of the station, around the corner and caught the 168 bus to the Royal Free Hospital for Les' first assignation with nuclear medicine, where they welcomed us with paperwork and took us off to a room where medical attendants in lab coats with plastic arm protectors and latex gloves gave Les a radioactive injection to be followed later with a full body bone scan.
     We were then told: "the person injected needs to sit out in the yellow room and use only that toilet. Anyone not injected with radioactive substances has to sit around the corner in the regular waiting room and use that toilet. Make sure you (Les) drink 2 liters of water and empty your bladder frequently. Your actual MRI will take place in three to four hours."
     Really? Why then did our appointment letter say, "After your injection it will take four hours for the radioactive materials to settle into the bone. You will need to drink 1-2 liters of water and return to the department four hours later for your MRI."
     Being a naturally curious person, I asked about the difference in instructions and was told that if the patient chooses to stay in the waiting room then anyone accompanying them must sit elsewhere so as not to be surrounded by radioactive people. We were welcome to meander around in public as long as Les agreed to stay away from children, pregnant women, flush the toilet twice, and not hug me!" Huh...
     I had to have the same procedure back in 2009 when ovarian cancer raised its ugly head for the second time in a year after being given an all clear by the oncologist. My injection took place in a double insulated room with a medical person dressed in thick plastic goggles, a lead apron from neck to ankles and heavy black lead lined gloves which went up to their armpits! I was not allowed to leave the area and I was told not to move while the injection settled into my tissues--not even my eyeball muscles! Afterward I was instructed to go home and spend the next 24 hours alone. The only person I was allowed to see and hug was myself. 
   All righty then, we decided to leave the hospital and expose the good citizens of Hampstead Heath with whatever radioactive miasma might ooze from Les' pores. On the many bus rides I have taken to and from the RFH over the past several years to visit Les during his incidents of unfortunate incarceration I thought I had remembered seeing a path from the street behind the hospital, down to a miniature park next to St. Stephen's Church, Rosslyn Hill. We took our time and walked pillar to post, stopping at these roadside attractions to rest along the way. We reached the top of the street and found I had imagined the park--it was simply a bench under a tree on the street corner near a path called Hampstead Green. 

The location of our bench is marked with a red star *

     I bought Les a HUGE bottle of water at a nearby shop and we settled down on the bench in the shade of a leafy tree. It was really quite pleasant temperature-wise and Les said he was surprised to feel pretty laid back. We read the local paper, and people watched. There is an on-going construction project at the backside of the RFH and a traffic warden employed by the company was perched just on the corner, watching for artic lorries (definition for Americans: semi-trucks AKA articulated or artic lorries over here) and cement trucks which are kitted out with speakers that piped up, "Caution this lorry is turning left;" a precaution for bicyclists who do not pay attention. Just to prove the point a cyclist shot around the back of the lorry like a bleeding rocket heading down hill into the face of traffic at the speed of sound. 
     I kept tabs on Les' pain level and meds, making sure he received Tramadol and Paracetamol on schedule. We brought the Oromorph as a backup just in case he had any bleed-through pain. When we determined lunch was in order we looked around at what was available and chose the romantic Chez Kentuck Frit Sheecken for a takeaway which we ate sitting on our shaded bench watching the world go by and exposing the unknowing populace to Les' radioactivity.
"Baby do you know I have had more alfresco dining experiences with you than with any other man?"
We giggled like teenagers as Les recalled our first outdoor dining foray at nine o'clock on a soggy May evening in Nantwich as we ordered pizza slices and sodas to take away and sat on a bench located smack in the middle of the actual high street lanes, where we watched the local night life moving about. 
Al Fresco dining in Natwich! The red star marks the island between Swine Market St. and Oat Market St. where Les and I sat scarfing pizza in the romantic glare of a street light at nine O'clock at night.
     At the appointed time we walked slowly back to the hospital where I chose to live dangerously and sit in the yellow room with Les. Soon they took him hostage and forty minutes later Les returned looking a bit dazed. The MRI didn't hurt, however in order to keep Les as still as possible each arm was imprisoned in its very own sling and his ankles were taped together. No internal probes were involved so that was good!
     It was three o'clock and the bus back to Euston was one of those plummy new jobs for which we can thank former London mayor Boris Johnson. These new buses are meant to be a retro version of the original Routemaster bus which had open back entrances so people could hop off and on with the help of a conductor--except there are no conductors on the buses these days so the back door remains closed when the bus is underway. This new configuration means the buses lose nine seats at the very back and have three doors--a back, middle, and front door, AND the bloody windows don't open, hence their nickname "roast masters."  Inside temperatures on these new buses have been recorded as high as 30C/86F--a temperature illegal to transport cattle! There was no air con on this bus. By the time we reached the railway station I was sick to my stomach and very near to fainting from the heat. I nearly face planted myself in the tarmac getting off.
     Inside Euston Station I purchased two very expensive ice-cold cans of elderflower drink and rolled them over my hot, sweating skin as I slowly trudged back to find Les in the central terminal. We sipped our beverage and waited for the next train back from whence we had come. It was announced, and as all London train commuters do, we moved in a fast swarm, en masse down the departure ramp to board the train waiting at gate ten but--oh wait!! "Ladies and gentlemen this is NOT the 15:45 to Northampton; I repeat this is NOT the 15:45 to Northampton. That train is now approaching the front of this one..."
     So off we all swarmed to run up to the doors of the four-coach train coming to a stop in front of us. Les can still move faster than me in a pinch even with a limp and he worked his way to the front of the queue and dived in the doorway to secure us two seats with plenty of leg room at the very back. Air con!! AHHhhhhhhh.
     After four stops we detrained into the hot breath of hell that was the afternoon breeze, took the lift to the bridge and another lift to our platform where our next train was waiting; a diesel rather than electric train which meant--no air con!!! 
    Finally we got off this train and trudged in exhaustion and too much bloody sunshine, off the platform, down the street, down a lane, over a pedestrian bridge, and down the towpath to our floating home. We had left all the windows open and the curtains pulled hoping valiantly NB Val would feel a tad cooler than the outdoors but actually....nope. After opening the front doors, and the back and side hatches, we stripped down and I took a COLD shower, soaked my T-shirt in water and rung it out, slipped on a pair of panties and called it good. Les wore his boxers and sat with the evening breeze ruffling its way up his inner leg. Neither of us gave a good damn about what anyone walking by might think. A narrow boat is eighteen tons or solid steel heated to temperatures hot enough to easily fry an egg and give you one hell of burn in the sun.
    This morning I rose at 5:30 am to give Les his meds and he went back to sleep, feeling pretty damn bad. Yesterday's adventures kicked the shit out of us both, proving beyond doubt that neither of us are teenagers anymore. Whereas I felt like I had been reincarnated as a limp dish cloth, Les was seriously hurting. He got up about 7:30 am feeling and looking like death warmed over. I gave him more meds, but he had not yet had any breakfast. Consequently he soon felt dizzy and nauseous. As he lay in bed I began doing laundry and cleaning the boat while there was still a bit of morning coolness left. Suddenly Les piped up in a panic, "Jaq the boat is turning on its side!!" Usually he doesn't notice the boat rocking gently when I move about but this morning he felt like he was on an un-fun ride. 
Cherry Bakewell Cake
     Jules and Richard of Jules Fuels stopped and filled us up with ninety three liters of diesel and left with two pieces of fresh baked Cherry Bakewell cake with fresh cherries picked from the trees on the towpath. Eventually Les snapped out of it and came around once his meds caught up with his pain and leveled everything out and holy moly what a diff!! As we sat and sipped iced coffees my baby was positively Chatty Kathy (A doll from my childhood with a pull cord at the back of the neck; pull the cord and she talked endlessly! The older models had a glitch in the voice recorder. As the cord spooled in again her voice speeded up like an auctioneer on speed. 

       "Fe****g hell Jaq that scared me this morning. I really thought I was dying. I counted on my fingers the months since this all started and thought 'it's only been three months! Surely I'm not dying yet. I can't go yet--I have to tell Jaq about how the boat works, and other things that need sorting out.' But Jaq I really did feel like I was on my way out. Now I'm feeling great and really pleased to know I am not ready for the undertaker just yet." 
Yeah??? Well me too baby, me too!!

Sunday, July 10, 2016

A Change in Plans: Slowing Down to Savour the Moments

"Hope has two beautiful daughters: their names are anger and courage. Anger that things are the way they are. Courage to make them the way they ought to be.” ~ St. Augustine of Hippo

We made it up the Braunston Flight and down the Buckby lock Flight with help from our friend and fellow boater Arthur Pritchett (NB Dabchick) and his daughter Helen.  Many thansk for blessing us with your company and help! We overnighted at Weedon and continued on to the Stoke Bruerne Flight Friday afternoon. We made it down the Stoke Bruerne lock flight with the help of a CRT Volunteer Lock Keeper named Jane. Thanks Jane! We were both knackered so we decided to moor up on the last of the rings before the place where the water is pumped up to the canal by the River Tove. It is lovely and quiet here.

We have decided to slow down a bit now that we are past the three lock flights. It is unlikely we will ever be up here again together so we are going to take time now to stop and moor up at several places we love. We can cruise down to Campbell Park and catch a train down to London for Les' MRI on the 18th and also into Tring station to liaise with his GP. We have enough pain meds now so Les' urgency to go south as quickly as possible has passed and he is doing quite well with very little deep pain at the mo. So for today, life is good.

Our deepest thanks and love to everyone who has responded with offers of assistance and words of love. Les says he will be along at sometime or another to do more blogs although we have no idea of the content. Time will tell...

Wednesday, July 06, 2016

My Heart Is Breaking