77 Chemicals

29 January 2017


I have been off the steroids for 2 days now and my own haven't re-started yet. The great thing about them is that they make you feel 30 years younger. However, when you stop taking them, you feel 30 years older! So right now I feel about 99.

It's much easier to manage when I know the reason I am feeling so low and knowing that I will recover over the next while. I do have a tendency to take on too much but don't be concerned because right now feeding and sleeping pretty well fill my agenda!  

Cheryl is down in London for a few days spending time with her sisters and delivering paintings to a gallery for a show. Mike is here for 2 weeks and we are enjoying a very relaxing time together. Today we were drone flying in the living room. Mike is way better than me because he plays video games and is used to the flight controller.


On the topic of  how chemicals affect our body I was reading about how contact with pets releases hormones. Studies have shown stroking a cat does cause a release of oxytocin in both humans and our animal companions, which is often called the "love hormone."

It's certainly true that our cat Blaze is great company and he is so affectionate. It's nice to know that he is helping in my recovery in a purely natural way.

76 Lifeline

27 January 2017

I was thinking today that with my current problem of not being able to swallow I wouldn't survive long in the primitive wild even if I could find roots, bugs and small animals to consume. I guess most of us would perish if we were catapulted back in time by 20,000 years but some of us would adapt to the loss of Tim Horton's and Burger King.

It's dinner time now and that's perhaps why I mention Burger King. They do a delicious Veggie Burger and I could just eat one right now instead of sitting under this drip feed of beige goop! I have introduced the BK Veggie to several people and they all liked it. It's different and in the USA it's not as good --  CANADA FIRST!

This got me thinking about my parents. If it were not for modern medicine my father would have died of type 1 diabetes at age 38  instead of 81 and my mother would have died at 42 of ovarian cancer instead of 94. For my mother all that was required was surgery. My father spent the final 43 years of his life having a daily injection of insulin to keep him alive. His timing was lucky because insulin had only been in general use for few years when he  became ill.

I do feel a special kinship with my father now as my survival depends on this fragile plastic tube. Even if we are lucky enough to have good health and never need medical intervention, our modern society has extended our lives in so many ways. We are very fortunate compared to all previous generations.

75 Ends

26 January 2017

I had a bad evening and poor sleep last night but it is interesting how the downs always generate new insights.
Insight #1 - If I'm going to chew a spoonful of delicious home made marmalade for a dinner treat, spit it all out and don't accidentally swallow any of the rind or it will get stuck in your throat!  It was unpleasant but it made me realize how little my swallowing has recovered and I started thinking about being stuck on tube feeding for the rest of my life. Pretty negative thinking for a psychologist!

I am feeling better now because on waking I chose to give myself at least 6 months to recover instead of wallowing in self pity.

While driving into town today to get my eyes checked I was thinking about the cycle of life which is an expansion followed by contraction. After we are born our abilities blossom and expand in many different directions but the process slows down and a contraction eventually begins. We gradually go into reverse and our health fails in different ways as we age.

My eye check today showed that my eyes are perfect and I still have better than normal vision. It doesn't fool me though because I have quite good evidence that other body systems are showing signs of age and malfunction. Anyone involved in sports sees this clearly.  I am not running marathons any more.  I am not running, I am not even jogging right now. Walking is it!

There is something intriguing though about that end point. In Cheryl's meditation retreats it is taught that full awareness is only realized once we can remain perfectly still. It's as though while we are in a blur of motion and activity in mid life we miss much of importance. Perhaps the important learning only has a chance when we are going slower near the end of life and can see the world with our calm attention; just like when we were babies. I must say that despite the hardships I am having now, I am learning so much and am excited to see the revelations of each new day. Life is good!

74 Rollercoaster

24 January 2017

I visited my wonderful family doctor to discuss the continuing problems with the pain medication schedule.which still meant 2 wakings per night. Monitoring showed that the Fentanyl patch was providing exactly half my requirement so he doubled the dose. Now I only apply a new patch once every three days!  What a relief! I can sleep through the night, at least if the cat didn't pounce on me asking to  be fed. Here is a video of the event - just click the link-
 https://www.youtube.com/watch?v=Jrq03XENSdY

However this next few days could be difficult because I have started tapering off the steroids. I also seem to have some
more chest congestion and coughing which I hope clears quickly. But nothing is ever perfect! Cheryl thinks I am pretty close! (And so is She).

73 Medication and Food

22 January 2017


Today was a day of contrasts. This morning we had a great visit with Richard & Christiane from Ottawa with a walk around the island followed by refreshments. I had a few sips of coffee and a tiny nibble on one of Mattea's delicious cookies.  After our friends left, I set up my lunch drip feed and near the end I was very sleepy so lay down in bed to take a short nap at about 1:00pm with my drip feed still running.

That was a mistake!

Now that I am on a low dose Fentanyl patch I need to add morphine to maintain the right level. So I woke at 3:30pm from my nap, missing my noon morphine dose. The result was a state of sudden withdrawal. It was like falling into a pit of pain, misery, confusion and disorientation with no escape. With great difficulty I found the medication and 15 minutes later I was feeling much recovered.  It convinced me that withdrawal from pain medication must be slow. I'm on a low dose so withdrawal for addicts must be the worst feeling.


23 January 2017

Today I had some further thoughts about the delights of eating. I still have pangs of mourning about my current tube feeding fate and I am trying to find ways to cope in case it doesn't resolve itself. Yesterday's experience with friends along with sipping coffee and cookie consumption was so pleasant and it reminded me that much of our past social activity is associated with eating. The one thing I really miss is the Waterview restaurant in Long Sault where they serve the best Chicken Souvlaki and perfect breakfasts! 

Thinking that I can't eat is too simple an analysis because eating has at least four separate components. As well as the social part, the main pleasure is enjoying the aroma and flavour of good food and this is all completed while chewing in the mouth. Swallowing comes next and finally digestion for the body's energy needs. Swallowing itself isn't a pleasure laden activity. It is just the brief but essential movement of the food to the stomach. This makes me realize that I can chew all my favourite foods and enjoy the delicious tastes so long as I don't swallow! So, when I join you for meals in the next while I will bring a fork and a spittoon and sample all the dishes that you have ordered while enjoying a good visit. I hope you don't mind sharing and, the spitting!

72 Wine & Cheese

20 January 2017


We were in Ottawa last Friday to review the last swallowing test. I was a bit depressed after seeing the lack of progress because I wondered if I would ever be able to eat food or drink again. 

I fought back gallantly later in the evening by cutting a slice of 3 year old Balderson cheese and chewing it thoroughly in my mouth till it was a gooey pulp. The flavour was intoxicating and I was able to swallow some of it. There is nothing wrong with my sense of taste or smell so this may be one way to compensate for my limited swallowing - for now. I can also taste fine wines but swirl and spit will be required. Scotch is off limits though because it would be a crime to waste it.


Good news for pain management is that I am in the process of switching to a Fentanyl patch which lasts 3 days instead of liquid morphine every 4 hours. So much easier to manage.


More exciting good news is that I got a call yesterday for an appointment to have a stomach feed tube implanted on February 2nd so I can get rid of the tube hanging from my nose. I will be like the "Borg" in "Star Trek" and when it is time to feed I will just plug myself into a machine. There is even the possibility of using a special pump for night time feeding so that will free up lots of spare time during the day. I am usually a slow eater so when I go out for lunch with friends I usually just listen. But now, I will be able to talk, talk, talk! Too bad for you guys!

71 Hope

19 January 2017


In a recent email, my young cousin-in-law was praising Cheryl & myself for being wise in how we are managing this stage of our lives. I want to give you part of my reply because I don't feel  particularly wise.

Andrea, you are just as wise as us or even wiser and the only difference is that we are just a few small steps ahead of you on the trail of life so we see a little more of the view ahead. My parents would often say to me "you will understand when you are our age" as though I was stupid and naive but it is just the simple fact that our model of the World contains a little more data and our actual thinking skills have to be declining with age.  "Now, where did I put my glasses, I had them a moment ago"!!!

You, in your wisdom, go straight to the essential point - HOPE.

When we honestly consider the time we have remaining on this planet we have to consider how we want to spend that time. It's a bit like someone saying to you "How do you want to spend your birthday?"  You would never say "I will be miserable because the next days after will be boring and nothing special".  If today were my only day of life I would make the most of it within my physical limitations and it would be wonderful. The last pages of a well written book are where all the loose ends seem to come together and all the mysteries are solved. Our task as we age is to become better life-book writers!

Working out a good ending to a story is a challenging task and I feel lucky that I have some time to sort things out. I feel sorry for people meeting sudden death unprepared since that must be a very frightening experience.

 
p.s. I had some humorous pictures in the blog to illustrate some points but Cheryl didn't approve so I deleted them. (Rule 328 - "A happy Wife is a Happy Life") Cartoons and pictures will return in future blogs.😇

70 Steroids in Antarctica

18 January 2017

I am reading "Endurance" by Alfred Lansing which is a factual

account of Shackleton's ill-fated attempt to cross Antarctica by foot  in 1914. His ship became stuck in the ice and the crew were forced to spend Winter in the Antarctic. After long voyage on the drifting pack ice followed by a perilous sea crossing in small boats, Shackleton brought all his crew home alive. Here is a Nova documentary - https://www.youtube.com/watch?v=0bToqGFvAcM

Reading such an amazing factual account of survival makes my relative discomforts seem minor. I even have all the vast medical support systems to alleviate any discomfort and for that I feel  lucky.

I am on a day 5 of a 2 week treatment on steroids and it is really helping. The mucous and phlegm in my throat has already dwindled to a minimum and my swallowing seems to be improving. The swallowing problem could be due to damage to the vagus nerve or irritation of the nerve from swelling. I hope it is the swelling because nerves are slow to never in self repair. The steroids also give me a huge increase in energy which Shackleton's men would have greatly appreciated. The down side is that coming off the steroids is quite unpleasant but the boost in recovery they give while active is so welcome.

My problem with this excess energy from the steroids  is to force myself to rest and not dive into my sports and my lengthening to-do list!

Well, I am taking a break now for a bike ride and I'll finish this blog this evening. It snowed a bit over night but my mountain bike tires have good snow tread.


Don't be concerned I only went for a half hour ride after which I walked at a very leisurely pace behind my snowblower to clear my driveway and the driveways of my 2 neighbours.  Things were a little quiet in the afternoon so I took our cat to the vets for annual shots and dropped in to pay the balance for my new motorcycle which should be delivered in about 2 weeks. I am hoping for some warm weather!
 

GO  STEROIDS

 I think I will have a quiet evening 😄

69 Philosophy

15 January 2017



The blog number 69 is interesting in several ways. I'm not going to talk about the one you want. Just Google it with the explicit filter turned off 😉

69 happens to be my current age but if you switch the numbers around then 96 is close to the age my Mother died. She never made plans for the future so she had no direction to help her make decisions. As a result she felt victimized by the harsh realities of her final years. I think it was Bette Davis that said "Old age ain't no place for sissies".  As a result I have tried to be better prepared for the future.



During my life I have found that shock and dismay is experienced when our world view is delusional. Not delusional in a clinical sense but just not quite consistent with reality. We all know from an early age that we are going to die but the words often have no impact until serious illness strikes. We don't even have the courage to say dead! Instead we talk about "passed away" as though the person were  just out of reach in some unknown location.

My science education, combined with my high curiosity, has also influenced me to be in touch with reality and I have delved into uncomfortable topics, including death, along with the fun stuff. The Eastern mystics are well ahead of our Western culture in that respect and a good source of information*. The bottom line is that by accepting death I can get used to the idea that my life will end. The result is that I can comfortably remain a fascinated observer of my end stages of life as I have with all the other stages. I think my incomplete attempt at writing an autobiography has helped me gain this perspective of time. It was difficult to write much about the future but I did an outline of the most likely possibilities. Death is in there as a certainty but I am a bit fuzzy about the actual date!

I just received an email from a loved cousin-in-law who just experienced a severe allergic reaction that required emergency hospitalization. I plan to talk to her about the benefits of such near death experiences once the trauma is past.



I hope that by reading this you will realize that this period of my life is difficult and frequently painful but I am well equipped to cope and I have a wonderful family and friends like yourself that strengthen me. Most of you ask what more can you do and my reply is that you are doing a huge amount just by being my friend and communicating as you have already done. If there is anything specific I need then I will surely ask. Meanwhile I urge you to go on enjoying life to the full just as I am doing.

Geoff XO

* Two books I recommend are:-
"Full Catastrophe Living" by Jon Kabat-ZIn
"The Tibetan Book of Living and Dying" by Sogyal Rinpoche

p.s. I will only be doing a blog every few days so if you want to keep in touch, just check weekly.

68 Crystal Balls

12 January 2017

It's not every day that you get a glimpse of the future and even when yo do there is Heisenberg's uncertainty principle which means you can never be certain of anything (until they place the lottery check in your hand).


On Tuesday I had my swallowing test with a 3D X-Rated movie, no,no; a 3D X-Ray movie of my pathetic attempts to swallow various fluids and foods laced with Barium (to make them opaque to X-Rays). The good news is that there was no aspiration but even for small sips, I was able to swallow but it took me as many as six attempts to get down the whole amount. The speech pathologist conducting the test wanted to analyze the data more but she felt that radiation damage to the Vagus nerve was responsible.

She also attended today's meeting with the radiation oncologist and she confirmed that Vagus damage was the most likely cause. This means that I will require long term tube feeding so a stomach tube was recommended to eliminate the thing dangling from my nose. The stomach tube will require surgery and it will mean no more restaurants. With some practice I may be able to swallow small quantities of some foods so I can enjoy the flavour.

We discussed the progress of recovery with the oncologist and he said that the radiation had failed to achieve the goal of removing the cancer. Clearly there are some lymph nodes that remain and there may be other areas of cancer tissue. This will soon be explored more fully with a CT scan of the neck.

Basically he said that they had run out of options since I did not respond to the radioactive iodine and surgery and radiation had both been implemented extensively. The main focus will now be on interventions that improve my quality of life in the time remaining. This came as a surprise to me because I had always assumed I was immortal. It just means that I am an ordinary human being with a limited life span just like everyone else. It has been a great journey so far and I will do my best to ensure that continues day-by-day until it stops.

67 Ultra Marathon

7 January 2017

Today was cold and sunny but the lack of wind meant that is was the prefect day to set a new distance record. I was glad that Cheryl agreed to accompany me since I would be voyaging into unknown territory and finishing might be difficult. The planned route was about 80% farther that I had managed before so finishing was a bit of a gamble. I agonized a while over footwear since the road still had lots of ice (like in the picture) although it had been graded in the centre. I finally decided on my running shoes with the short metal cleats.

The first part of the route went well despite the extensive ice coverage. Cheryl just had her Winter boots and no cleats so she stayed in the centre of the road.  There were only gentle hills but they were a good warm up for the major climb that was just before the half way turn around point.
 


It was quite a shock when we reached the climb and my legs felt weak. All the previous walking and stationery biking had not required such effort. I remembered that shortening my stride and breathing  deeper was all that was needed and we slowly approached the summit next to the Parkway toll booth.

 It felt so good to reach the summit and we paused for a while and relished the idea of the long and easy downhill that was the start of our return leg. By this time we were fully warmed up so the centimeters seemed to fly past.

We continued to keep up a good pace but the final half kilometre was very difficult for me. As is so often the case, the nearness of the finish inspired me to continue when my legs were dead. Sitting down at the finish felt so good and after a shower we both relished the runner's high after walking a whole four kilometres. For me it was a new distance record since my radiation.

66 Progress

3 January 2017

 I thought you would like to know that after the last snowfall I snowplowed three driveways. Our neighbours across the road were away from home and Bill next door was not well so I just kept going!  I tell you this to show that my energy is coming back nicely and my lungs are certainly recovering. Visitors also remark on how much better I am looking. Not quite movie star level but better than before. The one area where there seems to be little progress is swallowing. This means that I may have to stay on tube feeding longer and I really do miss normal food and drink. The swallowing part of my throat got a high dose of radiation so it will need more recovery time. When I go out in public I am a bit self conscious about the tube hanging from my nose. I have decided that if anyone remarks on it I will say that I am a visiting alien and can't breathe the air on this planet!

I am enjoying hiding out in my cave although I was sad this morning since both Kath & Mike have departed. I felt a little better by keeping busy. I installed the new clothes dryer and figured out the problem with the generator. I was checking the generator because of today's forecast ice storm and it wouldn't run. The problem was just some old gas so when I drained the tank and carburetor then added some fresh gas, it ran fine.

Next week I have the next swallowing test and another session with the radiation oncologist. So, in the next few days I have to practice my swallowing and rest as much as possible.

I hope all of you have a great 2017!