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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.

Sunday, September 25, 2016

Hospice Care: What It Means to Us

"You matter because you are you, and you matter until the end of your life. We will do all that we can not only to help you die peacefully, but also to live until you die." ~Dame Cicily Saunders, Founder of the Modern Hospice Movement

   "The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey.  The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.
   Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University.  Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.  This lecture launched the modern movement which resulted in the development of hospice care as we know it today." (National Hospice and Palliative Care Organization.; accessed on 09/25/16.)
   "By the 1950s, social trends were changing and most people died in hospitals rather than in their own homes. This change reflected the growing number of treatments available in hospitals. The medical profession increasingly saw death as failure.
Cancer was the most feared diagnosis. Physical pain afflicted at least three quarters of cancer sufferers and appropriate painkillers were rarely used. Morphine was considered addictive and too dangerous."
   In 1967 the very first modern Hospice was opened in Sydenham, London. "Led by Dame Cicely, St Christopher’s set out to discover practical solutions and to disseminate them widely. There were, of course, other hospices before St Christopher’s. These hospices were oases of dedicated nursing care for the terminally ill, but they were not what we now think of as modern palliative care. In contrast, St Christopher’s was committed to education and research, as well as excellence in clinical care.
   This combination of science, care and sharing of experiences identified the opening of St Christopher’s Hospice with the start of the modern hospice movement. A holistic approach, caring for a patient’s physical, spiritual and psychological well being, marked a new beginning, not only for the care of the dying but for the practise of medicine as a whole." (St. Christophers.; accessed online on 09/25/16)
   In 1969 Dr. Elizabeth Kubler-Ross wrote her groundbreaking book On Death and Dying. Based on interviews with 500 dying patients, it is their experiences which Kubler-Ross distilled into the five stages of death and dying: denial, anger, bargaining, depression, acceptance. These are the emotional stages one usually experiences in the loss of a loved one. 
   Les and I experienced shock at this diagnosis, anger about former medical treatment which we feel has brought us to this point, and we jumped right on to acceptance. This was possible because of my previous experiences with death and dying. 
   As a former Hospice volunteer I know from personal experience the one major mistake people make when faced with a life limiting or terminal diagnosis is allowing denial to drive their thoughts and choices. This shuts one off from seeking assistance at a time one needs it most. Too often people wait too long to contact Hospice when it is the first contact a terminally ill patient and their family needs. 
   I have seen Hospice care dramatically improve the quality of life for patients to the point they were able to leave , having gained insight into how to engage in better self-care, and how to actually live and enjoy life in the face of terminal illness.
   But Hospice is not just for the terminally ill; it also exists to help immediate family and care givers, providing support for those who so desperately need it in the face of overwhelming emotions, endless care giving, and consistent feelings of helplessness and sadness. 
   There are generally two types of Hospice care programs: inpatient where the terminally ill person is provided a room in a hospice setting which provides on-site medical care and around-the-clock service; outpatient which brings hospice into the home of the patient, allowing those who choose to do so, to die at home in familiar surroundings. 
   What does all this mean for me and Les?
   It is Les' wish to die at home, on our boat, with me by his side. We shared this with our GP, and she referred us to Rennie Grove Outpatient Hospice. We had a wonderful initial meeting with Nurse Jenny who was at first surprised and then relaxed about our very frank and straightforward approach to death and dying. Now that we are hooked into the local Hospice program, a Hospice nurse visits us at home every other week and we have one phone number to call at any given moment should a need arise--it matters not if it is morning, noon, middle of the night, weekends, bank holidays or Christmas. The 24 hour a day reception service takes our information and a Hospice nurse calls us back within ten to fifteen minutes. They liaise with our GP and the local Visiting Nurses, who come and see us on the weeks in between the Hospice nurse visits.
  What this means for Les is that his pain levels are consistently monitored by the nurses--some of whom can prescribe meds and others who contact our GP or the Hospice Palliative Care Specialist physician to ensure Les has always got the appropriate medications for his situation on hand.
Les feeling good and working on a project!
   It means that when Les felt as though his legs were going to give way in the shower, a call to Ian Rennie and a chat with a nurse resulted in a hospice occupational therapist visiting our boat, measuring our bath and ordering a shower seat which fits our tiny bathroom and our needs like a good glove. 

   It means that when Les' stoma blocked up last week at 3:15 am, leaving him in pain so acute all he could do was cry and moan, I had someone to call. A Hospice nurse came straight away and gave him an injection of Di Morphine to take the edge off his pain. After conferring with her, I called an ambulance which took Les to the local A & E.  

   While I was standing outside the A & E making a phone call, I overheard the conversation of another woman on the phone. Her father-in-law was in the A & E. He has terminal lung cancer. I overheard this woman talking with her sister-in-law: "...yes, yes and the doctor told me they had dad stabilized now and he could go home but this happens every time. He cannot breathe so we bring him in, and they stabilize him with the nebulizer and let him go home where his condition deteriorates and we are right back where we started." I waited for her to hang up and apologized for listening in on her conversation. I told her why we were here at the A & E and then I told her about Rennie Grove Hospice because the medical staff of the hospice could no doubt stabilize her father-in-law at home and save them all much grief and anxiety. I hope she took my advice and called them. This was a perfect example of how and when hospice can step in and make life better for a terminally ill patient and their loved ones.
Les being carried off the boat by paramedics.
   It means that once Les returned home again, the Visiting Nurse came and checked in on us. In recapping the situation for her, she realized that Les did not get the dose of 12 hour timed release Morphine from the evening before this event, because it was trapped in the blockage, and he didn't get the dose I gave him the following morning during the event because he vomited it up. So he went for 24 hours without the consistent amount of analgesic required to allow him to function comfortably. She suggested that rather than upping his dosage after this event, we continue on the same dosage and see how Les did, which was good advice. Once life settled down again, Les functioned superbly on the current pain dosage--as along as his body delivered it. the longer we can keep Les comfortable on lower dosages of Morphine, the better off he is.
   It means that when the Hospice nurse checked in with us the following week, she had been brought up to date by the Visiting Nurse and after thinking about Les' situation, she asked if she could contact our GP and discuss changing Les' pain meds from timed release Morphine capsules to a Morphine patch which would deliver Les' needed pain meds even if his stoma blocked again. 
    It means that since we don't have a car, and I am using crutches on long journeys due to the Osteoarthritis in my right knee, that we have only had to step foot in a pharmacy or a GP surgery only once in two and a half months.
   For me it means I don't feel like the entire weight of Les' care is sitting on my shoulders alone. Given that Les' health can turn on a dime this is very important to me. Any time I have a question or concern, I can contact Ian Rennie Hospice and someone will return my call right away to discuss my concern and help brainstorm a remedy or provide me with and answer which is so comforting since Les' health can change in a heartbeat these days. If I needed time away from caring for Les, the Hospice program would find a volunteer to sit with him while I went out.
   As a former hospice volunteer I have washed dishes, made beds, and fixed a meal for overwhelmed care givers and family who simply did not have one ounce of energy left to lift a finger other than providing care to their dying loved one; I have organized drawers and closets for a weak terminally ill patient so things suited their present circumstances better; as a former hair stylist, I have cut the hair of patients too weak to travel to a salon; I have painted finger and toe nails, helped very weak patients eat, visited weekly with lonely patients who had no family; I have sat with people who were taking their last breath in this life and whose family was too far away to be there at the time so they did not have to die alone.
   I have sat and drunk coffee with bewildered family members while explaining that death is hard work for the dying. It only looks easy for those of us at their bedside. In actuality the dying person who lies quietly not moving or speaking may be re-visiting memories, shuffling through life experiences, settling things in their hearts and minds, and dealing with extremely deep emotions to which we on the outside are not privy.
   Their spirit is also beginning to disconnect from its body and this is very hard work. We are born into this world in these bodies which grow with us and carry us through our lives. We take our bodies for granted until they no longer work as we expect and we too often confuse our bodies with our essential self. This is why quiet and peace is crucial for someone on the very cusp of dying. Every time their room is packed with visitors and people are talking away to them, the dying spirit is called back to its body and the whole process has to begin again. This is one reason why people often choose to die late at night or in the wee hours of the morning when no one else is around.
   For us the involvement early on with Hospice means things like Do Not Resuscitate (DNR) orders and where Les wants to be when he dies have been discussed and agreed upon. In the final analysis Hospice means we have time to focus on living well each day instead of focusing only on death, because these issues have been discussed, addressed, agreed upon and will be dealt with appropriately as they arise.
   So what does living look like with the knowledge death is just around the corner?
   For us it means I am looking ahead only far enough to anticipate what Les might need to feel comfortable in the months to come when he is boat bound and can no longer walk. The dinette will be made into his bed so he can lie somewhere light, airy and sunny. We are looking at getting a couple of those round mirrors used to see approaching traffic in tight spaces. These mirrors mounted at the right angle above the dinette would allow Les to see the passing parade of boats and people. The dinette area will allow Les to see visitors and watch telly. 
   It means I don't think too far ahead otherwise I fall into what is called Anticipated Grief--which anyone who has experienced can tell you it feels like a shock to the heart while being fitted with lead boots. Anticipated Grief is the overwhelming knowledge that someone we love is dying and one day very soon they will be gone-forever. It is very easy to get caught in AG and feel so overwhelmed that one cannot function and then it steals away precious seconds and moments we still have left with our loved one. It takes a lot of energy to stave off Anticipated Grief. And no this is not is the recognition I will have the rest of my life to grieve Les once he is dead; I will not allow myself to get lost in grief now while he is still here by my side.
   It means we take every opportunity to laugh. 
   We recently finished watching a series on New York City--what makes it so great, how it functions, etc. etc. etc.  One of the programs covered NYC's massive garbage program--the largest of any city on earth. The next morning we sat discussing it over breakfast. Les said,
   "The U.S. is such a big place, you've got the room for rubbish. It could all be dumped in a giant canyon somewhere for years and then sealed over with topsoil once the canyon was full."
   "Well," I replied, "I have always thought it would be a good idea to simply dump all the garbage in an active volcano--instant incineration."
   "Yeah but how could you get close enough to a live volcano to do that? I don't think that's possible."
   "Why not? There are ancient cultures who got close enough to active volcanoes to sacrifice virgins in order to ensure a good crop. If they could get close enough to throw someone in then I think disposing of our garbage via volcano is possible." At this point Les got the most amazing look on his face--half wistfulness and half regret.
   "What a terrible waste of a virgin." 
I laughed so hard my sides ached and Les had tears in his eyes as he took on a broad New York accent and called out, "RED HOT VIRGINS!! Get your red hot virgins here!!"
   On another occasion we were discussing one late evening, my upcoming appointment with the surgeon in Warwick for my right knee operation. One of my concerns about going through with surgery soon is how we will get coal off the roof. Les is no longer capable of hoiking bags of coal down and I certainly won't be doing that for about three months post-op. We discussed several scenarios and toddled off to bed...
from where I was woken out of a sound sleep at 4:30 am by Les sitting straight up in bed--still asleep--and yelling, "Get down off the roof Jaq!! Now before you fall!"
   With my heart banging in my ears I cried out, " For Gawdsake Les I'm not ON the roof--I am lying here in bed right next to you!"Les opened his eyes, looked at me and we both burst out laughing; it was so obvious Les' dream was fueled by our bedtime conversation the night before.
   It means that while we have always been in sync with another from the first week we spent together back in 2010 at Cloudhouse in Pullman, Washington, we are so deeply in sync now that we are literally reading each others' minds throughout each and every day.  I think something and Les says it; Les thinks as he empties his stoma bag in the bathroom "Oh I need to write orange air freshener spray down on the grocery list" at the very same moment I pick up a pen and add it to his list. We have always had these little moments but now they occur several times a day, every day.
   It means we hold each other and weep when our hearts are too full to contain our emotions. 
   As a witch, the moon in its many phases is sacred to me and I have a deep love of La Bella Luna. Les and I have watched five years of full moons come and go but the full moon on September 17th was more meaningful than others. We were sitting in our recliners, side by side, watching telly as I noted the moonrise. I said to Les, 
   "Look baby, the Harvest moon is rising." Les leaned over so he could see it and as he looked out the bow doors his shoulders began to shake. He was crying, overwhelmed by the beauty of the moonrise.
   "Why does it take death to make us appreciate the beauty all around us? I never really looked at the moon like this before and saw how really beautiful it is." Tears splashed his cheeks as I held Les in my arms and cried with him, thinking, "How many full moons does he have left to see?"
   It means Les has drafted a list of boat projects he wants to do as longs as he feels well enough to keep working. Les has always enjoyed working with his hands and building things. His dad was a coach builder back in the days when buses were constructed around wooden frames. He used to bring little Les to work with him and Les learned the pleasure of working with wood and building things to last at his father's knee.
   Of course this also means Les tricked me recently by asking me what things I would change on the boat after he was dead and gone. I thought he was asking out of mere curiosity. I didn't take into account he might had an ulterior motive.
   "Well, I want to tile the galley counter tops and replace the kitchen sink, and I want to do the same thing in the bathroom." Both projects seemed like something I could tackle on my own with a modicum amount of assistance. 
   Suddenly both items have been added on to his current project list. Cheeky Sod!! That list is long and some days I feel like we live in a permanent construction zone. Of course, such a list means that we have to make frequent forays out into the world at large for parts and supplies and I have to ensure Les doesn't overdo things--which can be tantamount to asking the world to stop spinning for a day, but Les gets such obvious pleasure and satisfaction out of each job. He also tells me, "Jaq darling, I just want to do as much for you as I can while I can still do things. I want to know I left you in good shape with the boat and all is the way you want it to be."
   A lump rises in my throat and I get tears in my eyes as I look around at all the lovely things Les has done to this boat for me over the years: moving the fridge from the floor to the top of the galley counter, plumbing in the washing machine directly to the boat's hot and cold water system, building book cases for my books, and pull out drawers in the galley for my pots and pans; mounting a spice rack above the kitchen counter and a knife magnet on the wall; making slim, stylish dish and glassware cupboards out of Ikea Billy bookcases; extending our bed from 4 feet wide by 6 feet long to 6 feet by 6 feet; sourcing the foam padding for the extra mattress extension, installing sliding baskets into the wardrobe cupboard where the washer used to live, for clothes storage, building a new larger medicine cabinet in the bathroom and installing a composting loo--all this Les did out of love for me. 
   The current list is long and he has now ticked off: 
  • Reinforcing the hinges on the leaning wardrobe door (which doesn't lean any more) 
  • Replacing the broken hinges on the front bow steps
  • Updating the front of the saloon cupboard with new fronts and beautiful brass pulls
  • Replacing the kick planks on the front steps with new wood look vinyl planks
  • Buying and installing a new TV with up-to-date technology (Les swore HD could not possibly make any difference in the clarity of the picture. Now that we have replaced our twelve year old, 15 inch, non HD telly and separate Freeview Box with a new 24 inch, Hi Def, digital unit with a built in DVD player, Freeview and wireless, Les cannot stop staring in delight at the picture! We are both looking forward to streaming movies directly from Netflix on our TV instead of our computers. 
  • Replaced the galley drawer and cupboard knobs with lovely new brass cup shaped drawer pulls that don't catch my pockets and look gorgeous!
   What is left on Les' Self defined Honey Do list? 
  • Kitchen sink and counter tops (we spent a lovely, quiet Tuesday in Ikea, looking at the displays, choosing a sink, while Les examined it in situ and we took the bus to Apsley and visited a tile showroom to pick out tiles for the countertop.)
  • Bathroom sink (Another Ikea purchase)
  • 3 plug USB station (it will be mounted in the saloon cupboard below the new TV)
  • Rear Seat boxes (the wood is cut and the stain is bought)
  • Front locker top (wood to be purchased and delivered to boat)
  • Rear hatch cover (we lifted a great idea from Tom on NB Waiouru, involving ball bearings and we are contracting with a marine engineer to do the work)
  • Rear Engine hole Cover (still batting ideas around)
  • Re-glue the loose wood trim and port hole frames throughout the boat
  • Raise the dinette table
  • Install a corner shelf in the bedroom with a reading light mounted underneath on Les' side of the bed
  • Install a shelf in the front bow closet
  • Purchase stainless steel T studs and have them welded to the bow of the boat so I can reach them to moor up.
Les is over the moon about how much he can still accomplish. He just said, "I am so chuffed Jaq. I can still do a lot as long as I rest in between jobs and I'm having so much fun doing all this."He doesn't stride along anymore, he shuffles now, but he still gets from point A to point B.
   I wouldn't want anyone to think all Les does is work, work, work. 
   We have purchased advance tickets to three matinee movies at the Rex Cinema in Berkhamstead. We've seen Jason Bourne and Eye in the Sky which was riveting! We will see Dare to Be Wild and Eight Days a Week next month. We've sat out at our little bistro table on hot, muggy evenings and enjoyed delicious ham sandwiches, fresh fruit bowls and homemade Brownies; we took a bus into town to have a mooch around and Les treated me to another al fresco dining experience with a picnic lunch from Wenzel's bakery. We sat on benches in the shade and ate sandwiches on lovely brown bread, with crisps (potato chips) and Carrot-Orange juice before hitting Clas Ohlson and Lakeland for bits and bobs. 
   It means we have trips planned: three days in London, using our Avios points, in December when the boat is blacked, and if we are both in decent shape perhaps a seaside trip somewhere.  It means we grab life by the fistfuls and gobble it up in laughter and tears. It means we make the most of each amazing moment we live because we know now how truly precious each moment is for us.

Thursday, September 08, 2016

A little medical and continuing the original cruise.

So after all the talks of Stanmore Orthopaedic getting involved and waiting on records of  just what amount of radio therapy I had back in 2013 it seems that I can have no more as the limit was almost reached in 2013. As for Stanmore`s involvement they are reluctant to do a biopsy because of my reluctance to undergo chemo therapy treatment.

So back home with MST prolonged release morphine sulphate tablets every 12 hours that seem to have the pain under control.

Since being back I did get a bit adventurous while under this pain free umbrella and ventured out two days running and ending up in great pain with the result Jaq had to phone the 24 hour on call hospice nurses.
Having noted all the relevant figures, of not just my MST  but also the extra Oromorph consumed over the past 24 hours, within 10 mins the exact dose and timing was relayed to Jaq and within an hour calm was restored.

This was followed by a visit the following day from a hospice nurse who was also a prescribing nurse, and I always thought only doctors could prescribe drugs. After a phone consultation with a consultant at the hospice the prescribing nurse decided to slightly increase the MST and put me on Steroids for a short time.

All I can say is it has been a 100% success with my feeling pretty much wondering if this 6-12 month prediction of my life expectancy has any foundation. Anyway just have to take it as it comes and I have no doubt Mr Cancer is working away in the background however good I might feel.

Back to the cruise that had to be terminated, just like me, and we  have turned onto the Trent and Mersey at Fradley junction.
Wood end Lock
Still no sign of bad news at this point.
Past Kings Bromley marina.
This was an ex British Waterways maintenance boat that has become home to someone. Hope it gets raised and drys out for them.
All that`s left of Armitage Tunnel
Spotted on the long term moorings at Spode House.
The view entering Rugely is pretty much dominated by the power station. It has just recently closed down with the loss of 120 jobs. Not only will the job loss affect Rugely but the power station was the councils biggest business rate payer and this will have a big impact on the town. At present it`s a very depressing place to walk around with many empty shops and a very large collection of charity(thrift) shops.
This is bridge 66 giving access to the town centre and for boaters the Morrison's supermarket.
With the road over the bridge closed you can sleep without the constant cars sounding their horns and as you can see Morrisons just a short distance.
Now from the bridge in the other direction you have Tesco open 24 hours. Still even with no jobs the residents of Rugely still have to eat. Personally I always look on Rugely as a stop for Food and a mooch around the charity shops for books. Also decent bus connection for Lichfield that has reasonable shopping and the Cathedral plus a short walk out of town, or the bus passes on it`s way into town, the work going on for the Lichfield canal at Borrowcop locks canal park. Worth a visit on the way into town as it`s just a 15 minute walk into the town centre after a walk along the restored sections.
Cannock Chase over to the left, after leaving Rugely behind it`s nice to be back in open space.
Never bought diesel here but it has always looked closed, perhaps tying up and sounding the boat horn would bring service.
Maid of Oak made at Jim Bates yard on the Aylesbury arm off the southern grand union. I`m wondering if this was the first wooden narrow boat built since the last carrying days.
Back in the countryside and they trust you to put your money in the box for your eggs.
 Now heading towards Great Haywood and the Staffordshire and Worcestershire canal to spend a few days of relaxing and giving what we thought at the time was a very severe back problem. Having tried an Osteopath back in Hinkley Jaq was looking ahead to find another or perhaps a Chiropractor. Penkridge was some 10 miles ahead and about 6 locks so a good rest and hopefully between us we can find a solution there.