97 The End

The  End

I am still living a wonderful life: my lovely wife, two delightful offspring and a perfect cat. I have so many cherished friendships and this past year has been richer than ever before in an atmosphere of love and caring.

My active life of cycling over 10,000km on my bikes, running marathons, hiking, backpacking, sailing, kayaking, cross country and down-hill skiing, and snowshoeing has ended. I am not capable of any of these activities and now only walk slowly around the garden. Because I am tube fed, I have not had our experience of sharing meals with family and friends. I am without a quality of life that I have treasured since I was a child.

Fortunately, my brain is working very well (intermittently) and I have been able to experience many hours of joy, laughter, tenderness and honesty with my wife, children, sister-in-laws and many friends.

For most of the time since the age of about eleven I have been very much in control of my direction and I see no reason to give up that control now. At one time matters of life and death were considered to be the realm of a higher power but now that medicine is in control some options are available for re-empowering the individual in reducing suffering. 

Our medical system automatically performs extreme measures to preserve the faintest spark of life unless a "Do Not Resuscitate form" is completed. I have one in my wallet. However, I have reached the point to close the final chapter in my book of life.

My timing is fortunate because in Canada we can now have Medical Assistance In Dying (M.A.i.D.) if we meet several criteria including having an irremediable medical condition and rational consent to request medical assistance. This is an option that few people easily choose. However I decided that for me, this is the best option and the last few days with my family and friends have proved it to be a very wise decision indeed.

This photo was taken this afternoon and we will spend tonight, the last of my life sipping Dom Perignon 2006, something we would never have dreamed of, but this special occasion warrants something extravagant. In the morning, I will say goodbye and rather than having the catastrophic end they had predicted, I will go mellowly into death. I want to thank all of you for your love and support during this difficult time. It is wonderful to have friends and family like you, and you need do nothing more than remember me well.

96 Kilometre Stone

Kilometre Stone

Well, I made it to the grand age of 70 on the 28th. of August.  I finally feel like I have grown old and that brings a certain satisfaction. My Mother in her eighties often said while complaining about her aches and pains, "don't ever grow old." My regular reply to her was "It's better than the alternative!" She was never able to figure out that the alternative of being alive with a few aches and pains was better than an early death!


On the 23rd August I was at the Ottawa hospital checking in for another radiation course. This will just be for two weeks and it should kill off some of those peripheral  lymph nodes that have recently been causing some pain. As you might imagine I have some negative feelings about further radiation and I did get a second opinion from my surgeon about the advisability of the proposed treatment. He reassured me that the dose will be small and it's goal is to improve quality of life. It won't address the main course of the cancer which is surrounding carotid arteries on both sides of my neck. My decision to proceed with the radiation was because I have not been feeling well enough over the past 2 weeks to ride my bike or motorcycle. Luckily I have vast numbers of downloaded movies from our 2 kids to entertain me until I get some improvement.



My birthday on the 28th was celebrated by visits from my nurse and my dietician. Cheryl found some excellent white wine to go with some smoked salmon as a special treat. I was able to chew and appreciate the salmon but no swallowing was possible.
The next day I started my 2 weeks of daily radiation sessions in Ottawa so my 70's will begin with a heavy medical involvement but when that's finished I will start enjoying our fabulous Fall colours.

Cheryl had one of the best ideas for my 70th birthday - no party but inviting my friends, acquaintances and relatives to share some of their positive memories of their past contact with me by email.
I should explain that introverts like me are easily overwhelmed by large groups of people and I much prefer small groups or better yet, one-on-one interaction.
These emails have been flooding in and I have been quite surprised at some of the wonderful lost memories that I have retrieved. I also feel bathed in love and affection by descriptions of the huge number of happy, meaningful and productive interactions that I have experienced with those wonderful people over my 70 years. There were some negative memories but only the very best of my friends will laugh with me about those!

So, a big thank you to everyone who responded. You have made this a very Happy Birthday!
 

95 Interesting Times

"May you live in interesting times" is not usually meant as a blessing but may have it's origin in a Chinese curse.

Actually I am finding this a most interesting time and I am learning all sorts of things about this journey. In one sense we (our age group) are all in the same stage of life and I just happen to be lucky enough to have more detailed info about my future than the rest of you in the 70 plus age range. It is quite possible that I will be attending one of my friends funerals before I attend my own! Especially the way some of them drive! One important thing I have learned is that I am not my pain.  My pain is well managed most of the time. My days have some discomfort but also have joy and delight. It's true that I have had to give up some activities but I have found others to substitute. One example is my blog which is very satisfying and it is the first time I have ever done any creative writing . It's about myself and for someone as historically private as me it's a whole new adventure that yields great satisfaction.


My feeding problems have also forced me to reduce my recreational exercise and live on fewer calories. Cycling is one activity I didn't want to give up so I have converted my mountain bike to electric assist. I can now go for long rides with minimal exertion. Of course I have one of the most powerful electric motors installed so I am able to overtake those young lycra-clad racers like they are standing still. That's only on power level number 2. I wonder what power level 5 will be like!


In my recent visit to my medical specialists it seems like the cancer is progressing quite rapidly and my life expectancy is estimated at a few months with one or two years at the very most.  This is useful information since I tend to work at a relaxed pace and leave things to the last minute. There are a few projects I want to finish so I had better get to work. Well, perhaps not today. The weather is perfect and I will invite Cheryl to go for a bike ride this afternoon! Save the other stuff for the rainy days!

So, bottom line is you can be happy for me because I am coping well enough with issues that can be hard. People often say "I have lived a good life." I  think that's true for me but I would add that "I am living a good life." As a psychologist I have always had to be comfortable with the harsher realities of life that others might hide from with delusion or denial. I can summarize my attitude with --- "Don't Worry, be Happy"or one of my favourite sayings "worry is optional."

Have a good day 💕

94 Food Shortage

July 2017

I have been having increasing problems with feeding this month. I am having stomach pain and it seems to be caused by slower emptying of the stomach. As a result my weight is dropping again and I am down to about 136 lbs.  At that rate by late 2019 I will be down to my birth weight of 9 lbs 3 oz!





We were not able to see Dr. Saloogee (gastroenterologist) as he was on holiday but we were at the pain program and the doctor started me on a new medication that might kick start my lazy stomach. So far it doesn't seem to be helping much but we will wait and see Dr. S when he returns next week.
My previous MRI scan showed the cancer has spread to the left side of my neck and Dr. El-Sayed said there are some affected lymph nodes there that could be treated with further radiation. It is possible that my left side vagus nerve is now affected by the cancer and this might explain the increased stomach problems.



One piece of good news is that my complaining has resulted in getting my status upgraded with the CCAC. My new palliative care status is similar to being upgraded to business class on a flight and I get frequent visits and much more attention from nice nurses who try to meet my every need!

Biking 28th July

My energy level is lower than normal and Cheryl really enjoys this because we are much more compatible when walking or biking together. Sometimes we have races to the top of a hill and Cheryl feels really good when she beats me - Wonder Woman!! The photo was on one of our early morning rides and that's why we are dressed well. The rides are only about 10 km but very enjoyable. Unlike in years past, I have no computer on the bike and I don't feel the need to set any speed records!

93 Downslope

24 June

The real trick in getting older and coping with the inevitable downhill slope is to make it as easy as possible like riding a bike downhill. Drugs help of course but I am coming to the end of my daily half dose of steroids that I have been on for the past week. I have been very productive on the medication and find that I just keep working on the long job-list from (before) dawn till dusk but I haven't slapped anyone, - yet! That drug holiday now comes to an end and hopefully there will have been some good healing as a result.


26 June

As expected, stopping the steroids has been quite unpleasant. Today I am in survival mode but each day should be a little better. One good distraction is my complete stock of Star Trek episodes downloaded by son Michael. What a great gift and it should keep me entertained until I am feeling better. In 1969 during our first year of marriage I watched Star Trek every night after we got home from work while Cheryl cooked dinner. You are right in thinking that this caused some friction in our relationship!




30 June

One of Cheryl's favourite sayings is "It won't last".  It's a good for dealing with problems like pain, hunger, a losing lottery ticket, a rainy day etc.. Another of her favourites is "One day at a time".  This one fits really well with my philosophy of living in the moment and not mentally roaming in the unalterable past or the non-existent future. Our cat Blaze is a shining example of these two sayings. He never ruminates about the past or future. All his energy is focused on satisfying the needs of the moment. These are food, going out, coming in, tummy rubs, chasing the laser pointer, having his head scratched, sleeping on our bed and more food. Cats can teach us so much!


I mention these ideas because I am feeling better this morning. I still need a few extra shots of morphine but I am over the worst of the steroid withdrawal.

For those of you who are still working I hope you have some good holidays during the next few weeks, and for those of you who are retired, I hope you are well enough to enjoy our continuing holiday!

92 Steroids

Steroids

11 June
One week ago I was fortunate to get an appointment with the pain management team of the oncology department. They made some changes in my medication routine and put me on steroids for a month. The instant result was that my constant flow of mucous and coughing almost completely stopped. I also have much more energy although I am finding that I should not use all that drive but continue to get good rest. I can only stay on the steroids for a month but it's a bit like having a holiday! It will also be like the post holiday blues while I am weaning myself off the medication! The results suggest that my throat is still recovering from the radiation damage so it could be quite a while before I am able to eat again.

I am certainly enjoying the Summer weather and getting out on my motorcycle as much as possible. I have accumulated almost 3,000km of local riding so I am getting comfortable with managing the beast. I am still making some most enjoyable modifications to the engine, controls and suspension so it is perfect for my needs. Cheryl & I are walking regularly and doing short bike rides together so I am keeping fit.

Katherine will be home in a week for about 6 weeks  along with her cat. We have been a little concerned for her safety living in Qatar but she reassures us that it is all OK and her flights home are not affected. The first two weekends she is here Mike will also be home, likely with his girlfriend Moira. So we are quite excited to have all the family together again.

91 Saga

I was at my family doctor recently and I noticed how thick my file was. When I joked about this with the secretary she said "that's not funny; this one is volume two". My file had been quite thin until recently so it was quite a shock to find it so massive. I read somewhere that most of a person's medical costs occur just before they die so by that reckoning I have been dead for about 2 years. I find it's not so bad really but it does resemble that Catholic concept of limbo. I think this cartoon is a good example of the male image of what limbo must be like. My personal example is being forced to accompany Cheryl on an extended walk around our property while she describes in detail every plant and shrub. Not so bad you say but, every evening!

Last week I had a typically frustrating meeting with the oncologist. There were two positive outcomes though. He will be referring me to the palliative oncology pain management team. The previous week I learned about the pain management program from the speech pathologist and she had made the recommendation to the oncologist. He also scoped my throat to investigate the cause of my coughing up blood the day before. It was very interesting watching the video monitor and we found some red patches that could have been burst blood vessels. My constant cough could have irritated the area enough to cause the bleed but he didn't consider it a serious problem.

 
Two weeks ago the speech pathologist did another swallowing X-ray video to assess my progress. I didn't do too well and the results showed that I probably have a Cricopharyngeal Bar (green thing in the picture). I told the speech pathologist that this likely explained why I really enjoyed my daily half glass of beer! This type of Bar however actually prevents drinking and it may be possible to surgically remove it. So I will also get a referral to my "feeding tube in tummy specialist".


I am continuing to do a little better with my food intake but the new medication is not solving all the difficulty with slow stomach emptying and indigestion. My weight has stabilized at 141 lbs and I seem to have lost all that long distance biking muscle. The advantage is that my bike rides are now much more like Cheryl's preferred distance and speed so we are riding together several times per week. Sometimes she cheats by using her electric powered bike and either humiliates or inspires me on the climbs.

That's about all the news for this month I have an appointment at the pain clinic in one week which I am so pleased about because the neuropathic pain is hard to manage and my recently increased dose of Fentanyl does not seem to help with that type of pain. My lengthy tube feeding prevents much traveling but our home is much like a cottage retreat and last evening we were sitting on the beach enjoying the tiny waves lapping gently on the shore. I don't feel much need to travel; I feel that I have arrived!

Have a great June :)

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