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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.


Arthur and Jen said...

Very powerful words, Les. I remember bringing you both through Braunston and Buckby back in the summer and marvelling at your approach to your limited future with such bravery and concern for your beloved. Having been through the mill with cancer but having come out the other side, I understand your feelings and regard your positive attitude as a marker for anyone else facing the same sort of dilemma. We will get to see ypu again soon, but til then, keep your strength up and keep smiling!
Big hugs to you both.

locheriboll said...

You hang in there Les. We are coming in May and expect to see you still pottering around and cracking jokes. Xx
S and J

Sue said...

Yeah, a really good blog post full of honesty and lacking in denial. A good plan of action in place for every eventuality as well.

I think you should look for cancer support forums to help others and show them this blog post and how you both feel and how you both are coping with terminal cancer.

However some may not be able to understand or visit because they are scared of what they hear.. They should not. It is a learning curve and deep thoughts for all of us.

Anonymous said...

Oh Les, what to say? You write beautifully about this incredibly challenging stage of your life you are going through. You're humor and love for life and Jaq ... well they fill the universe with joy. May you continue to live and love and laugh until your last breath. Yes it is what it is AND putting one tiny step in front of the other is all you need to do now. Love you both.

Pullman Karen now in Maryland .. paying attention to the path of Hurricane Mathew and sitting next to Jim in the ER room because he had a bad fall today.

Bryce Lee said...

DNR - "Do Not Resuscitate" has in many circles been replaced with
AND - "Allow Natural Death."

Sadly both of these phrsings are not one's choice, however we the ill or maybe not ill but have other problems should in reality ensure all
happens at the end with smoothness and grace. So maybe at this point add AND with a note afterwards, just in case; DNR seems so, negative. Natural Death happens to every living thing, the method by which it happens though can be very different for each and every living being.

Quaysider said...

As always, that was a touching and beautifully written peice to head off to work to... Without blowing smoke up your harris, for a bloke, you have what appears to be a natural ability to communicate your feelings. Most of us struggle with that. I've never met you - and more than likely never will (unless this bloody boat ever gets finished) but rest assured, your efforts HAVE made a difference to many people reading I'm sure... and personally I'm in awe.

Take care,

Lesley K said...

I have always tried to be stoic Les but you and Jaq have taken it to masterclass level. I just hope that when my 'bell tolls' I can be as realistic and honest in facing my inevitable demise as you appear to be. Stay strong dear man.
X Lesley

Carol said...

You’re a hero Les! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Les Biggs said...

Many thanks to you all for the comments. I felt it might help not just those we have met to understand how I feel but with the title it might reach others who just hit a search engine after finding themselves in the same situation as myself.
Just accepting the outcome is the worst part for most people, I found this easy, why I'm not sure. Perhaps my laid back attitude to boating over the past eleven years with no pressure to be somewhere now or at anytime has made me accept things. Such as "what will be". Or "there's always tomorrow". "if it rains i'll moor up". Not too sure but the boating life certainly has changed me.
My number one problem has been pain control and with this under control I feel a lot more in control of my remaining time.
Anyway many thanks again and also to the many who have E mailed instead of commenting directly to the blog.
Les x

Marilyn, nb Waka Huia said...

We love you, friend, and that dear wife of yours.
Looking forward to seeing you in May so we can have some more biggs hugs, Marilyn and David xxoo

Les Biggs said...

Marilyn my darling I shall try my hardest to wait until May, perhaps even longer say sometime in 2029.

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs