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Monday, October 31, 2016

A little more out and about

My last foray into the world away from the boat was laid out in my last blog post but omitted the missing houses that son Kevin and I had a nice leisurely stroll to from the Paddington canal basin after seeing the two bridges in operation. Just a 10 minute walk along Praed street will bring you to 23/24 Leinster Gardens W2 3AN.

"A curios guide to London" by Simon Leyland first caught Jaq`s eye in Tring library some two years ago probably about the time I was having the Liver surgery. With my recovery in mind she purchased the Kindle version from Amazon so that we could seek out some of these London oddities but this one, the missing houses, never did get a visit.

The story behind this is in 1863 the Metropolitan Railway opened the first underground railway in the world and operated it with wooden carriages and steam locomotives. The tunnels were dug on a cut and fill system that needed somewhere for the smoke and steam to leave the enclosed tunnel system.
A trench would be cut and the roof added and on top it was filled to the level of surrounding ground.

At Leinster Gardens Paddington the final filling in was not completed so that the steam and smoke could escape. The result is the front facade of the houses are identical but at the rear in Porchester Terrace is just empty space.
Mr Google showing the false fascade at the front. The dummy windows are the four rows of three tucked behind the trees.

 The book has many oddities and curios and we hope to be able to find more when the boat is blacked as we will not be able to stay on the boat when it is pulled out of the water and under cover.

What we have discovered is the Tesco points we had converted to British Airways Avios points for tickets to the states next May can be used for hotels and west end shows in London.
So with no financial cost we can get a decent hotel for three nights, perhaps see a couple of shows and seek out some more of the book`s curios. This will be early December so hopefully all will be well health wise.

I guess many of you are wondering how I am health wise.  Well at the moment my morphine intake has been increased slightly and an extra tablet for nerve pain has been introduced but I am still having pain at various times of the day, nothing regular so not easy to see a pattern such as when first getting up in the morning.

Anyway as I type this I await a visit from the hospice nurse who is able to prescribe and also is in close contact with a palliative care consultant at the local hospice hospital.

Quite often I sit and feel nothing is wrong, by that I mean there is no cancer and my 6-12 months of living was just a dream. Sadly I know that`s not true. But the good thing is if this feeling continues then my time I feel could extend to who knows when. Of course I do bear in mind that just because the pain is controlled our cancerous man is still working away inside of my pelvis but I honestly do believe my attitude to this disease will see me around longer than time predicted.  "It is what it is"

A few links now to finish off this particular London curio.
LINK 2   Paris and New York hidden tunnels
Just googling 23/24 Leinster Gardens or Metropolitan Railway construction 1836 will bring up some interesting articles and possibly better pictures.

Just to keep the blog boaty Jules fuels crewed by Julia and Richard have just delivered diesel and coal to Nb Valerie and are heading south through Cow Roast lock.

Friday, October 21, 2016

Out and About

Being able to get out and about with the help of modern day drugs is a bonus that keeps me sane.

Couple of nice benches outside the bank to rest my aching bones while waiting for the bus home.

The sign(left)  gives the impression that pedestrians are now needing a permit to stop in a restricted area or risk a fine.

Our friend Google shows things a little differently.
It just made me smile so just thought i`d share it with you.

Now with my senses being greatly affected by  Morphine my writings at times might seem strange, I`m sure you understand. Every morning we have the pleasure of a Cormorant arriving outside of the boat and having a very successful breakfast hunt below the surface. A couple of days ago two cormorants appeared together which is not rare but not to common.
My fuzzy brain got me thinking along these lines. If you wake up in the morning you might ask your partner if they want tea or coffee or would he/she like some toast put on, communication. So how did these two end up outside Nb Valerie together diving for breakfast?
How does one Cormorant tell the other about a swell breakfast bar on this section of canal. Yes you could say I have too much time on my hands but as we know that`s not true. I just put it down to looking at everything so differently through eyes now affected by the wonders of modern day painkillers of course.

By far my best out and about day of late has been with son Kevin. Having spent the last part of my working life around Park Royal, a very large industrial area in North West London I wanted to have a look around and see how the last 12 years have changed the area. Kevin is familiar with the area as he often accompanied me in the school holidays.
I decided to make a day of it and call in at Paddington Basin and show Kevin the newly installed Fan Bridge plus the long established Rolling Bridge. Also we could visit the house where I spent the first 18 years of my life.
As a bonus we would have lunch at a typical fast food wagon that also has an indoor diner that features in the BBC programme "The Apprentice" named "La Cabana". Who knew when Kev and I had our lunch break at La Cabana it would one day be part of a TV series.
Park Royal was also a location in the mid 1990`s series 9/10 for the lock up featured in Minder that starred George Cole as the wide boy and many others as "the minder" over many years the TV series ran.
George Cole was always ready to chat as he sat in the doorway of his mobile dressing room and Kevin just felt so important sitting drinking Orange juice with George, happy days.
Lots of other filming went on during my total of twenty years working in the area.

Start with the Rolling bridge, video is in the link above.

Next is the Fan bridge, again video in link above.

A few shots around the basin as we leave what is a very busy lunch venue for the office workers located here.

Now we are off to the house that was home for my first 18 years of life.
 Yours truly standing outside 23 Lothrop Street, Queens Park, W10. What you see is what you get, yes that`s the width of the 2 bedroom house. A house just 3 houses along from 23 has just sold this year for £850 thousand ($1million, one hundred and five thousand). 832 square feet.
 Above the Pink line is the Grand Union Paddington Branch. Over to the left the Orange are the moorings at Kensal Green by Sainsbury`s. Just about centre of  picture the Blue marks Lothrop Street.

 Some houses are larger than others so
with over two thousand houses on the estate that is some valuable piece of ground. 

As you can see from the floor plan on the left the whole property is just 15 feet wide and the whole property including the garden is only 70 feet deep.
Bedroom 3 I have marked is to be ignored as ours was a two bedroom house.

Toilet was outside and as you can see on this 1867/77 plan no bathroom. A tin bath in front of the fire in the room marked kitchen was the personal hygiene dept.

Not sure when the bathrooms were added but it must have been nice to have running hot water and a proper bath to soak in. The extensions were built across the sections marked larder and w.c.

Wednesday, October 19, 2016

Birthday Girl

A big happy birthday to Jacqueline. So much I could say but "I love you" covers it all.XX

Monday, October 10, 2016

Recent Visitors

Understandably there have been many visitors to the boat in the last two months that we have been back down on the southern Grand Union. It really is lovely to see everyone but it did get a bit overpowering and very tiring. So the solution was to keep a diary. This had to include not just friends and family but nursing staff from hospice and my GP surgery even the GP`s visits had to be listed. Also added to the list were me and Jaq`s trips out for instance several trips to the local cinema and various lunch dates plus my trips out sourcing bits and bobs for the little boat jobs I was slowly completeing.

It works just fine and now at a glance we can see if a particular day or run of days is becoming exceptionally busy. Having said that it`s always nice to see folk but some pre contact would be most appreciated.
Daughter-in-law Joanne with grandchildren Lena May, Kiernan, and Kiera.
My son Kevin and his partner Adele
Tony and Helen from NB Holderness.
Above, daughter-in-law Bev and grandson Jack; below is granddaughter Jordan and her boyfriend.

Marilyn and David off NB Waka Huia and to the right George and Carol off WB Still Rockin.
Robert who owned WB Wind in the Willows, moved to Brasil and married his heart's love, Maria. To have him turn up during a UK visit was fantastic to say the least.
Daughter-in-law Ozlem
Grandsons Batu and Teo.
Andy and Tina, ex cruising partners from my solo boating days and now very dear friends, on one of our many get-together dinners.

Sue off WB No Problem XL who took the trouble to travel by train from the River Thames. Thank you Sue.
All the pictures of me are no more than two weeks old so don't shy off thinking I'm wasting away and you're likely being greeted by some version of me from the past. Yes a little bit of weight loss but nothing drastic.

Thursday, October 06, 2016

Living With Terminal Cancer

What a name for a blog post eh! But that is what I am doing so I'll try to give some insight as to how I do it and what my feelings are.

I won't go back over the history of the Cancer and my diagnosis but new readers can perhaps start back HERE  in August 2013. If you trudge through the years you will find the bowel cancer left me with a temporary stoma, that still to this day protrudes from my abdomen, metastasized to my Liver then moved into the lungs and now has locked itself away in my pelvis never to be shifted.

I remember writing at the time of feelings which "ranged from disbelief to astonishment with a lot of fear mingled in."  There was certainly no reason for the two former feelings as in 2013 41,000 new cases of bowel cancer were diagnosed, which would seem to indicate that bowel cancer is a lot more common than we think. As for fear, I don't care how tough you think you might be there has to be fear floating around somewhere inside of you when you receive a diagnosis of cancer especially when terminal.

How one responds to a cancer diagnosis depends on lots of factors including whether the diagnosis offers a realistic chance for recovery or is terminal.

Personally I remember thinking "okay I have cancer, not been told it's terminal at this stage remember, and the surgeon will cut it out and all will be well." To me that was the only way to be, no good laying down wailing and moaning.

On our bedroom wall we have a sign given to Jaq in 2008 when she had stage 3 ovarian cancer.  This was and continues to be one of Jaq`favorite sayings. It certainly sums things up for me as well: "it is what it is". No good moaning, protesting or sobbing so  take a deep breath and let`s get control.

I honestly believe that we are all playing a game that began when we entered this world-- the game called life.

Each of us was dealt a hand of cards, some having a better hand than the next person. If your cards meant you were born into a wealthy family you stood a solid chance of a stress free life with an excellent diet and access to good health care with the high probability of a long life.
At the other end of the scale your hand could dictate the opposite although there are always exceptions so this is just a general view.

You could have the former hand but play it badly and lose any advantage. The latter poor hand could be played well to advantage but how many of us do that; we generally just float through the game of life without a care in the world until "crash bang wallop" that word cancer or some other personal tragedy raises it`s ugly head.

So here we are having turned back from our summer cruise to meet friends from the U.S. in Chester and I have decided yes "it is what it is" and I will just get on with it. First thing on our return south was to get linked up via my GP with district and hospice nurses. I cannot stress enough how important this is. Jaq`s last post detailed hospice care and services of district nurses.
Between the GP and hospice nurses my pain control was soon sorted quite often without the need for visits to my GO and now I can have a life that allows me to be mobile and get a few small jobs done. I manage to get out and about now which means being able to jump on a bus into town. This might not sound like much but after going through the severe pain of what I first thought was a back problem I can promise you it is superb.

The only indication I have of anything wrong is the very slight ache around my lower back that makes me shuffle along but this is to be expected as the cancer is in my lumbar spine and pelvis.

Visitors including regular visiting nurses are impressed how well I get around. Waking in the morning is usually pain free after laying in bed all night but after getting up and moving around it becomes uncomfortable within about 20 mins. It is soon time to take my second round of 12 hourly Morphine slow release tablets. After moving around a little things settle down and the day begins after breakfast once the pain meds kick in and I am able to move around in reasonable comfort once more.

Now don`t think this sounds good because if you look at Jaq`s last post the ambulance personnel are carrying me along the tow path. The incident was a stoma blockage made worse by the morphine I`m taking which causes severe constipation. A day at the hospital and some strong intravenous drugs settled things down enabling me to return home.

Back to my typical day and every little job takes many hours more than it  did  previously but I have now adjusted to this so I rest a lot whilst doing each job. It has to be this way as I have learned the hard way not to push myself. Trying to do too much means I end up in pain for a couple of days with a lot of Ora Morth being consumed.

Anything requiring measurement needs Jaq or someone to oversee as my brain is under the influence of Morphine and mistakes have and will continue to happen. Perhaps I might do a little blog of some things being done on NB Valerie, not all by me as a lot will be done by a local trustworthy engineer. One is the rear sliding hatch converted to slide on rollers. My problem is not having the strength to even lift the hatch off.

Another is the metal engine cover that Jaq can`t lift and neither now can I. Some of these jobs I talk of need to be actioned as Jaq will be on her own after I die and move on to.......Mmm! Now there's the making of a very long blog post so let me just give my thoughts.

I would hope that in the big marina in the sky I would be able to meet up with loved family members and friends who have passed ahead of me; now wouldn't that be something! I also hope to be able to watch over those left behind purely in observation mode. Whatever you personally see or wish for as an afterlife may I just say it's your dream my friends so make it as big as you want.

How many of us ever think of how or even where we might like to die? It certainly never crossed my mind other than the odd conversation which might end up with "I just hope it's quick". Now living with a death sentence these things become more important and need consideration. My choice for sure is not in a hospital but perhaps a hospice if my condition deteriorated enough to warrant admission.  Jaq will make that decision based on how she sees my health at the time.

After much thought and consultation with Jaq, the Hospice and District nurses, and my GP , I have decided to sign a DNR: a Do Not Resuscitate order. As I understand it now, should my heart stop for any reason, without a DNR in place the paramedics and medical professionals are duty bound to attempt resuscitation which breaks ribs, can puncture lungs, and do other serious damage in the service of returning a patient to life. But what quality of life is the issue for me at this point. The nurses have explained that it is highly unlikely I could be resuscitated but in the event it did occur, I would never be well enough again to return to NB Valerie. I would spend what time I had left in hospital, hooked up to lines of fluids and narcotics, and that is not how and where I want to die.

Hopefully my last days will be in a state of pain free sedation leading to complete unconsciousness with the only outward signs of something wrong being a change in breathing pattern.
This will all no doubt follow periods of appetite loss and long quiet periods of sleepiness. They say hearing is the last of the senses to fail so be careful what you say in front of the man you think is just resting his eyes. Or as Jaq used to say to the grandchildren as they shut their eyes for a nap in the back of the car on the journey home to mom,"are you checking your eyelids for holes?"

At the moment my chosen place to pop my clogs is the dinette on the boat that converts to a bed. As time goes on, or as the predicted 12 months left of my life ticks away, I will no doubt find myself confined to the boat.  Of course that 12 months was just a guess by the Oncologist based on previous patients and I fully intend to extend that as much as possible.

The dinette will give me a good view of boats passing by and a decent view of the tv as I while away remaining time watching some dvd's. It will also keep me in the main part of the boat to talk to visitors and not be shut away in the back bedroom which is narrow and dark.  I see Jaq and I spending a lot of time laying on the dinette, holding hands and chatting about anything and everything.

Of course all this might never happen, only time will tell. One thing I am certain of is the people caring for me will always make sure my pain is managed although this could well mean my slipping into a comatose state brought on by high doses of pain control Morphine. I did see this with my late wife Valerie in 2000 when Pancreatic cancer took her just a few weeks after diagnosis.

The picture below I took on the way back south in July, having had the terminal cancer diagnosis, and it was the first time I had any feelings of what lay ahead. It's the water point at

Tesco moorings in Rugby and I was walking back to the boat from the rubbish bin. Suddenly it occurred to me that it's highly likely I'll never pass by here again and this would be the last time I saw this place. I had such a strange surreal feeling and stood taking in as much of the scene as I could.

I guess to finish up the last thing to mention has to be the funeral. I suppose it is generally more traditional for a funeral director to take control and carry out your wishes or perhaps those of your next of kin.

Here in the UK the coffin and deceased arrive at his\her home, where flowers placed on coffin and also on hearse car roof. Mourners follow the hearse to the cemetery or crematorium. After a service in the case of cremation, the coffin moves behind a curtain to be burned after the service. A burial sees the coffin carried out to the grave and lowered into the ground. I think the burial is a more favorable thing because the mourners will at least get to see the coffin going into the ground whereas one doesn't really know how long the corpse hangs around before being cremated do we?

My choice is to have the services of a company that will retrieve my shell, cremate it and return my ashes to Jaq. My shell; that's how I think of my body without my soul in it.

 Jaq will arrange a memorial service for friends and relatives to attend where funny stories and a few jokes will be shared in celebration of my 69 years in this earth. I understand from my wife that our plan for a memorial service is more common in the States.

In the meantime I find myself crying, laughing, and having very intense experiences over seemingly trivial things which most of  us ignore or fail to notice in our rush forward through life. I am deeply grateful each day when I open my eyes and reach out to feel Jaq lying beside me. I find great pleasure in the contemplation of minor events most people would not even register, as I slowly stroll towards my last breath.

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs