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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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.