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.💤💤💤

81 Weeds

14 February 2017

I am usually positive and optimistic in the Blog but I do have a constant struggle with negative and pessimistic thinking. Those thoughts are like weeds growing in my garden and it is only by constant maintenance that I can stay positive. The main problem that currently erodes my sense of progress is the slow recovery of my ability to swallow following the radiation.

Yesterday I spoke with the Speech Pathologist about another X-Ray swallowing test but we agreed that there had not been enough progress to justify a re-test, yet. Before the call I had done a test by measuring 25ml of water into a glass and I tried to drink it as fast as possible. It took me just 38 seconds which is definite progress. The only problem is that 25ml is about one good mouthful so it's actually pathetic performance (Negative thought); but an improvement compared to my last test (Positive thought)! Slow drinking might be fine for a quality wine but it's not enough to keep me adequately nourished (Negative) but in time a full recovery is possible (Positive). My visiting nurse, Linda said she had worked with a lot of patients with the same problem and they all recovered within 6 months.

Our human tendency to focus on short term goals and not respond well to long term goals is a mixed blessing. It makes even the best intentioned of us respond poorly to far off issues like climate change. It is a big help though in managing and dismissing thoughts about death; the inevitable end of all our goals and efforts. I do think that by trying to manage each short term problem in a positive way I will be able to find a way to die well when the time comes.
.