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 :)

.

90 Botched

Yesterday I was scheduled to have an MRI of my head & neck at 5:10 pm. We were stuck in traffic on the way to the Civic Hospital which caused some stress but we were only 5 minutes late for the appointment. When I lay down on the scanner bed I asked for some head support but this wasn't possible due to the camera hardware. I immediately had increased neck pain in this position but my positive thinking was just relax and snooze through the 40 minutes of the test without moving or swallowing. After about 15 minutes the pain reached an intolerable point and I started to vomit so I pushed the panic button.


The staff added some head support but only about a half inch which was the max possible. We re-started the test but the same thing happened after a few minutes and luckily they had the bowl handy. At this point we had to stop since there was no obvious solution.


You can imagine how disappointed I was but there may be a solution. Cheryl offered to accompany me into the scanner room next time with the rolling pin for sedation. One good whack should put me out for the full 40 minutes.

With help from Nadia (the dietician) we have figured out my eating problem. It seems that my stomach is very slow to empty. I started taking Domperidone, which helps with stomach emptying and now I can take more liquid food with little or no discomfort. My weight had dropped to 139lbs one week ago but is climbing and now is at a robust 142 lbs!



Other good news is that I am riding my mountain bike and motorbike lots as well as going on walks. Below is a picture I took today of the Trilliums in the parkway.

89 Unblocked

April

I do apologize to everyone for the long absence.  I seem to have a bad case of Blogger's Block! I wish I could say don't worry and everything is fine but that isn't quite true. For the past 3 weeks I have had a bad cold which developed into pneumonia. I had a course of antibiotics and now have a ventolin inhaler. The cold is gone but I have a persistent cough and my energy is at a very low level so I think I need some more recovery time.


I am beginning to realize that recovery from the radiation may take as long as recovery from my surgery 4 years ago. I don't normally get colds and my recovery from any ailment in the past has been rapid. Not now though so I must be a patient patient and not expect too much. This time of the year there are so many outdoor tasks that I would normally be busy with but they are setting a good example by patiently waiting without complaining! I am still doing my core exercises and either a short walk or short bike ride each day. By short I really do mean short. Usually the maximum time is half an hour.

My enthusiasm for writing seems to have waned but in order to keep everyone informed of my progress I plan to do a blog entry at the end of each month. So, this is my Blog for April. It hasn't been a very good month so perhaps May will be better. It is a good time of year for walks with all the wild flowers bursting into life. Here is a picture of the Trilliums in the campsites near us taken in May last year. I wish you all a happy Spring!

88 News

1 April 2017

It's been a while since I wrote a blog so this is a news update.

My swallowing has improved a lot. I can easily drink half a bottle of beer now in the time that I usually take for a whole bottle. I find that carbonated beverages are much easier to swallow so I am going to get a prescription for beer to strengthen my swallowing response. I will also have another X-ray video of my swallowing to ensure I am not aspirating. If the results are good then I will start a gradual transition to real food.


My exercise has been regular with weights, core, cycling, walking and doing Cheryl's job list. I have more energy although I am still very far from my pre-radiation level. My weight is now down to 145lbs. I am hoping that the beer drinking will provide the extra calories that will halt my decline in weight.

I am still having problems with pain from irritated nerves and there are no easy medical solutions. Gabapentin is an anti-convulsant used to treat neuropathic pain. My dose has been increased and this has reduced the pain to something similar to a toothache and luckily it's only present about 30% of the time.

I have been enjoying my new motorcycle and have been out for 4 rides in the past 10 days. The weather has been cold but with my electrically heated vest and hand grips I have stayed warm. So if you see some crazy idiot riding a motorcycle in the next few days, it will be me, so wave!

87 Nerves

19 March 2017

I was talking to my family doctor about treatment for the nerve pain I am having in the right lower jaw and cheek. The pain is not constant but at times is very severe and the narcotics don't help. He said an appointment with a neurologist would take about 9 months and treatment another 9 months. So, I asked if there was any other option and he suggested I increase my dose of Gabapentin. The effect of Gabapentin is to shut down nerve transmission and is useful for epilepsy and neuropathic pain. In high doses the side effects are sleepiness, being dizzy and fatigued. It's too soon to tell but it seems to be helping.



Cheryl has a simpler diagnosis and believes it is just a simple case of Pain-in-the Neck and the solution is to smarten up.  Maybe I'll give that a try if the Gabapentin doesn't work.


My feeding problems have mostly been resolved with help from my excellent dietician, Nadia. She has changed me to a four times per day feeding and this means each meal is a size my stomach can handle. It seems that more than 400ml causes bloating and slower digestion. The only problem with four feeds per day is that I have little free time. Each feed take about 90 minutes and there is prep and clean up time as well.

Some good news about swallowing is that my ability seems to be improving. I can now drink about 100ml per minute without aspirating. This rate is still slow but much faster than a month ago.

More good news is that today despite it being only 6 deg C I went for a ride on my new motorcycle!  I only did 42km because of the cold. My orange suit is certainly not cool but it was my rain gear on top of my regular leather to stop the cold wind. It will take some getting used to compared to my last motorcycle since this one is a lot faster.

86 Happiness

9 March 2017


Most religions teach that happiness doesn't result from having material possessions. Well, I have definitely proved them wrong. The proof is just 20 metres from where I am sitting. It would be a lot closer but Cheryl forbade that. She didn't actually forbid it but I have become quite good at reading her expression and the look of horror and disgust was a sure warning of trouble.

Yesterday morning I got a phone message that my motorcycle was ready for delivery and so it arrived at 2.00pm. It isn't allowed in the house so I will be moving into the garage. It's not too bad because I have experience with Winter camping and Spring is coming. I may still sleep in the house.

The photo is very appropriate because the milky white aura that surrounds the wonderful machine is much the way I see it.

The passion some people feel about two wheels is interesting and I suspect it has been genetically selected over many generations. It probably started out as horse riding which conferred a great advantage in speed and power. Just think of the most powerful warriors in the middle ages. The knights in shining armor on their magnificent steeds. Also the native American tribes who depended on riding horses to hunt Buffalo. Over many generations riding conferred survival advantages to individuals and groups. So I think it's a little more than coincidence that the favourite leg-ware for motorcyclists is a pair of Kevlar Genes.

85 Troubles

8 March 2017

I must apologize for the long delay since my last blog but I have been a bit distracted by some challenges I have been facing.


Firstly, my new diet formula is working well but I am having a lot of difficulty with slow stomach emptying. As a result I am only able to consume 5 boxes of the formula per day without serious bloating. The problem is that I need at least 6 boxes to maintain my body weight and as a result I am losing weight.  There are several possible causes for the slow stomach emptying and I don't know the solution. I am meeting with my dietician Friday to look at possible options.



The second and more serious issue is that the pain in my right jaw and cheek has escalated. This nasty pest is likely called Trigeminal  Neuralgia (Mandibular branch). If you want more info check out    (https://en.wikipedia.org/wiki/Trigeminal_neuralgia). It seems I have had the atypical type for a while but recently I have also had the Typical type which is extremely painful but thankfully brief. I will be exploring treatment options and it may even be a temporary stage in the recovery from radiation. I am already taking the recommended medications and as expected, the narcotics don't seem to help.


I find that my creativity tends to dry up when I am uncomfortable so I won't be doing many blogs for  a while. I will post one a soon as I have some news to report. Just remember to be especially nice to Geoff in this difficult time. Also any cash donations are welcome and income tax receipts will be issued.

84 A Good Day

28 February 2017



Since my treatment had finished by December I expected 2017 to be a good year with progressive recovery. It hasn't quite gone according to plan but on this last day of February I think there is some progress.
I had thought that switching to the new feeding formula would solve the nutrition problems but I have continued to have bloating and stomach pain but to a lesser degree. I have tried a variety of medications and feeding strategies and I think I am making some progress.
My nurse and nutritionist have both stressed the importance of a slow feed rate but a fast rate followed by an activity like cycling or walking seems to work better for me.


Today  was a particularly good day because the morning started off with a great sunrise. Lots of Canada geese have arrived and some are in  the photo.  This bunch will be moving farther North and our permanent residents will arrive later. Soon I will have to start putting up the "NO GEESE ALLOWED" signs!

 

My morning feed went well with no discomfort afterward and on this warm sunny day I went for a bike ride along the Long Sault Parkway. It was only my second ride outside this year and it was so much more pleasurable than exercising in the basement. There were still a few icy sections on the parkway but most of it is clear for cycling The barriers are still up till the end of March so there are no cars to disturb the tranquility.





I am certainly feeling some positive energy in the past few days but it could have something to do with the imminent arrival of the new guest. The red carpet is already placed on the scrubbed clean garage floor!


p.s. I'll have to rethink this as Cheryl was not happy about her valuable Persian carpet (which was rolled up in a dusty corner of the basement) being used this way!

p.p.s. If you click on the photos they show enlarged.

83 Fed

24 February 2017

I am happy to report no more vomiting. My dietician, Nadia, worked hard to get my new food formula as soon as possible so I didn't starve. In the new food formula the long molecules are broken down so the stomach has little to do but pass the food on to the intestines. There was some immediate improvement but I have to feed at a slow rate and still have some problems with bloating. When I add all my feeding and medication time up it comes to about 9 hours per day. Just about a full time job! But the pay is good!!!


The meeting with the Surgeon went well and the news is a little more encouraging. The main advantage of papillary thyroid cancer is that it is likely to kill me much more slowly than some other cancers. When I asked him for a guess at a 5 year survival rate he said 60% but with a fair degree of uncertainty.  We discussed further treatment options and there are none that would be likely to be better than just watchful waiting. So, I will have CAT scans every 3-6 months to monitor any dangerous developments that warrant the risk of  further treatment.



The best news is that I visited my motorcycle dealer today and my new machine will be ready by the middle of next week! All I need is warm weather so the snow melts. Sorry skiers 😀

82 Feed

21 February 2017

I spent much of yesterday in emergency. Too bad really because it was a warm and sunny day. It happened this way. Early in the morning at about 4:00am I was just getting up and became very nauseous.  I vomited twice and was definitely not feeling well. Unfortunately Cheryl was in Ottawa overnight visiting family so I phoned her at 4:14am.. Those of you who know Cheryl well will understand that it was a very brave thing for me to do in waking her before, well, any time! Holding the phone well away from my ear I gathered that she was on her way home.


During the hour drive she had softened so her deeper compassionate nature had surfaced and she drove me to the hospital. There is always that scary moment when you think you will see the ER waiting room packed but this time there were only about 8 people there. I desperately wanted to lie down but that isn't allowed in waiting rooms. After hours of waiting interspersed with a few tests, the nice Doctor told us that my blood work was fine and the X-rays showed no stomach blockage. He recommended we speak to the dietary experts at the Ottawa general.


The situation had been building up for several weeks with increasing symptoms of bloating and abdominal pain. I guess at some point my stomach gave up and said "No More". It aroused some anxiety because my only source of food looked like it was going on strike. Some days earlier I had discussed the mounting problems with Nadia, our local dietician and she thought that very slow stomach emptying was the likely culprit and a solution might be switching to a different liquid diet. The one she suggested would be easier to digest and would empty faster from the stomach.

So after getting home from hospital I contacted Nadia and we are moving as fast as possible to get the new diet. That involved a prescription from the family doctor and ordering by the pharmacy. I have reduced my diet to a low level until I get the new formula. So, by the time you see me I will have lost all those extra pounds of fat I carry and will resemble the black cat!

Tomorrow I am in Ottawa to have a talk with my straight talking surgeon.

More on this exciting story in a few days.💤💤💤