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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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.