65 Fresh Air

29 December 2016

With our two offspring here, every moment is filled with action. Even writing down good intentions fails with the perpetual distraction. But, it is a nice distraction and we will miss them when they are gone.

One piece of good news is that I am making progress in healing my lungs. For my daily walks I can make it all around the island which is 2.5km. When I started I was only walking about half that distance and was breathing quite hard and needed occasional rest stops. Now I can walk fast with just normal deep breathing. I expected the improvement because I haven't been aspirating. I know this because I have minimized my swallowing.


Just after my last swallowing study I had some deterioration in my swallowing ability so I have avoided swallowing to allow my lungs to recover. There has been a small improvement in my swallowing over the past week but I think we still have a long way to go. I have my next swallowing study on the 10th of Jan so there is still time for recovery and I remain optimistic.

One exciting piece of news is that I received a drone as a Christmas present from Mike. We have been having a lot of fun learning to fly it and we are getting quite proficient. It will be the main weapon this Summer to scare off the Canada geese. All we have to do is remove the camera and add bomb racks for the fireworks and we are go! I learned recently that the geese bring lots of tics as well as their huge quantities of poop. It is likely that the reason we are tic free compared to our neighbours is because we discourage the geese from landing around the house.

I am really missing being able to eat food. It was more difficult than I expected to sit down at meal times and watch everyone else delighting in the tasty treats. We always have a steak fondue on Christmas eve and I just had to leave the dining room part way through the meal. Cheryl's cousin and Uncle will be joining us for new year which will be very enjoyable so long as I close my eyes for the wine and cheese consumption!

I hope you all have a happy new year and a great 2017.

64 Heartburn

21 December 2016

Today I learned that my heartburn is caused by eating too quickly and perhaps too much. The dietician (Nadia) did a home visit and was very helpful in answering my questions. I was quite proud of the fact that I could get the IV bag to drip the food at warp speed and consume a thousand calories in less than a half hour. Well now it's back to drip,  drip,  drip and towing the IV stand around the house for long periods. At least my weight has stopped dropping and I gained one pound this week so I am up to 149.

I had asked Nadia if I could have candy and to my surprise she said yes! Up till now the only taste delight allowed had been d-fizzed club soda! But, she said it had to be sugar free so if any was aspirated into my lungs there would be no sugar for bacteria to grow in. Cheryl is out right now with Katherine searching the town for sugar free candy. Nadia was unable to tell me how I could have an ice cream sundae or successfully inject grated Balderson cheese into my feeding tube. "She is not perfect" (anyone know that quote?)




Home is getting busy with Kath here and it's  difficult dealing with the pleasant aromas from her cooking. It will get even busier tomorrow when Mike arrives so the blog will only be occasional. There is no improvement yet in my swallowing and I have to use slightly more medication for pain control. My throat must be waiting for the new year to celebrate with food.

If I don't talk to you in the next few days I wish you all a happy Christmas. I will let you know if there are any significant developments.

63 Old Age

19 December 2016

With my sudden drop in fitness and strength it occurred to me today that I feel old. I remember my Dad saying while in his sixties that inside he didn't feel any different from when he was young. The loss of strength and ability is usually so gradual the it is not noticed as being different from last year or the one before. Perhaps that is why we have that illusion of sameness. as we grow older so there is no need to re-define ourselves as being in a different age category.

Those of us that do sports usually have an objective measure which clearly show the effect of age. Certainly for myself there has been a large reduction in my performance cycling and running. Actually I don't call it running any more, it has moved into the category of jogging. Today on my trip into town my movement felt a bit more like the picture on the left. My excuse was that I was going carefully because it was icy.





In my 30's I remember saying that I looked forward to the time when I could walk for fitness rather than run at great speed. What I didn't realize then is that each moment is exactly the right time to look around at the beautiful view and take a deep breath and enjoy being alive. Don't look forward; don't look back; Just look now.

62 Freezing Rain

18 December 2016

This morning we had freezing rain but the sun came out after and all the tree branches sparkled. It was too slippery to walk outside so I did my 2km walk on the treadmill downstairs. I don't enjoy the treadmill but I had my headphones with 60's rock music which helped. By the end of my 2km I was breathing quite hard at a pace of 4 kph. Just three months ago I was breathing similarly at more than twice that pace. I think my lungs need more time for recovery but even a steady 4kph is much better than I could manage 2 weeks ago.


Recently I have been trying to imitate our cat Blaze who is very happy and healthy. He advocates a placid life style with lots of rest and naps. Bursts of activity are fine so long as it is something really enjoyable. I think I might be having some success because I have been trying to think what I have been doing today and it is essentially - nothing!

This evening we had a short visit from four friends that we haven't seen for quite a long time. It was a very positive experience for all of us. They were pleased to see the improvement in my level of functioning compared to a few weeks ago. It was also good for me to be told how well I am doing. When everyone is telling you how well you are doing you have to believe it!

I still seem to be having some difficulty accepting the tube feeding. I think I had seen the end of radiation as the beginning of recovery. In reality, the damage from the radiation continues to emerge for several weeks after the end of the sessions. I will be patient and focus on the idea that each day happiness is a choice.

After the Freezing Rain

61 Washday

17 December 2016

 
This morning Katherine was up when I rose at 5:00am so she saw me at my worst. The longer I sleep the worse I feel so today I will try a nap and stay up later tonight.
 
The big project this morning was installing the washing machine - slowly! As a warm up, I did my half hour on the bike trainer to get my lungs functioning for the big task. The installation went well and I ran a short test cycle. The only problem was that the cold water supply tap is leaking and I can't see right now how to fix it. I will do more research before I call the plumber!


Cheryl and Katherine went to town shopping for several hours and Kath was delighted to find many things which are not available in Doha. I had my nap for 90 minutes while they were gone and felt very groggy when I woke. I'm not sure if the nap idea is a good one.

Despite being jet-lagged Katherine purchased in town a carefully colour matched basket to house my medications in a tidy way on the kitchen counter. By the time she leaves we will be totally organized!

Yesterday morning there was a beautiful sunrise. The warm water and cold air produced an ice fog that is unusually beautiful. I got my good camera out and took some photos. Other than pictures of our cat Blaze, I have been neglecting my hobby of photography. Perhaps there is something about being unwell that interferes with seeing the beauty that surrounds us. Hopefully getting the camera out is a sign of my gradual recovery. (click on the picture to see it larger)

60 Family

16 December 2016

This morning was a bit frantic with the removal of the old washer & dryer and delivery of the new ones. Two big strong guys did the heavy lifting but there were lots of other tasks. I had to order myself to take a break and spread the installation out over several days.






Katherine arrived on a direct flight from Qatar at 1:30pm in Montreal and Cheryl picked her up. We would normally do the pick up together but watching those two guys doing that heavy lifting this morning exhausted me!

Kath watched more than 2 movies on the 14 hour flight and didn't sleep so she was off to bed as soon as she got home. Her bed now has our previous electric blanket and we had it turned up to Qatar temperature!

I suspect that tomorrow she will review my medications and feeding schedule and insist on several changes. Also, for the next 2 weeks I doubt if I will be late or miss any scheduled medication!

I remain quite discouraged by my lack of progress with the swallowing. I keep reviewing the fact that the radiation damage was quite visible on the scope and it will take some time for the inflammation to subside. So, I am giving it about 3 days!  Just kidding! It could be 30 or 300 or never but I must give it plenty of time. Patience patient!

59 Food

15 December 2016

Today was feedback in Ottawa from the speech and language pathologist (S&LP) and the radiation oncologist (RO). The waiting room was crowded and I was hungry so I asked for a wheelchair with an IV post so I could hang my food bag and drip feed while hiding in a side corridor away from the crowd.


We met first with the S&LP and she said that in the swallowing test one week ago, she had observed some sensory and motor difficulty. A small amount of aspiration was also present in all of the tests. She believed that the origin of the problem was damage to the vagus nerve either in surgery or from the radiation. Since the problem seemed to start after 3 weeks of radiation I suspect that the radiation was the cause. She believed more time with the feeding tube was needed and she scheduled another swallowing test for the 10th January.

We then met with the RO and he used a scope to have a look down my throat. Inserting the probe through my nose was quite painful so I had my eyes closed and failed to notice the view on the monitor. Cheryl watched the whole journey and could see that the area in my throat that had been irradiated was  still very inflamed and swollen and there was lots of mucous. Just a little farther on everything looked very healthy and there was no sign of infection. The RO agreed that more recovery time from the radiation was needed before removal of the feeding tube. The rapid healing of the skin on my neck had given me the false impression that the healing was progressing well in all areas. So, no turkey for me at Christmas.

Our daughter Katherine arrives tomorrow for 2 weeks and our son Michael will be home next Thursday for a week so the best part of Christmas will be having all 4 of us together - sorry 5 (Blaze).

58 Floods

14 December 2016



Today was a convincing proof of my message from yesterday that troubles multiply and come at the most inconvenient times. I spent the early part of this morning fighting off despairing thoughts about my swallowing difficulty. Then something happened that totally banished such silly thoughts from my mind. Cheryl had started a load of laundry and shortly after we discovered a flood on the floor of the laundry room.

The emergency response Geoff turned on and I quickly located the wet/dry vac and started sucking up the pond. Cheryl was still debating whether a sponge or cloths would be best and she was most impressed by how quickly the water disappeared into the vac.  We filled the vac about 8 times before the floor was dry. I had gone way beyond my energy limit so I collapsed exhausted for a while. We had experienced trouble before with the lint filter becoming clogged and the water overflowing. The filter was indeed clogged so with my last remaining strength I changed the filter and turned the washer back on.

Ten minutes later Cheryl looked down the laundry chute and saw -  water. It's amazing how we can always find just a bit more energy. This time there was even more water on the floor so most of our morning was spent on flood clean up but, I didn't worry about my swallowing at all.

Clearly the washer, which is over 30 years old, had experienced a fatal aneurysm so in the afternoon Cheryl ordered a new one.

 One reason I was able to cope was that I have increased my pain medication to my previous level of 2.0ml every 4 hours. That takes care of the physical pain but what to do about the mental pain?  Having 2 floods works for getting rid of silly thoughts but surely there must be an easier answer! Perhaps the vacuum cleaner!! Evidently in China the vac has been used in clinical trial for OCD. I think I will give it a try!

57 It's Another

13 December 2016

My Dad had a saying that I didn't understand very well when I was growing up but as the years pass the meaning becomes clearer.

He said "If it's not one thing it's another and if it's not that, it's something else".

He was in the Royal Air Force during WW2 and served in England, Greece, Egypt, Sudan, Java, Sumatra, Ceylon and India. So he saw a lot of troubles and they didn't come neatly one by one.

Yesterday I was feeling low in energy and today my throat is sore and my limited swallowing is painful.  Cheryl has a cold and I have likely caught it too. She does kiss me every morning. That's likely what did it!

My feeding tube seems to be partly blocked and I think the cause is one of the liquid medications I take. It is sweet and very thick like honey and I think it is getting stuck in the tube. These minor troubles don't compare to what my Dad had to cope with during the war and we are seeing the medical team in Ottawa on Thursday and I am sure they will have some answers. Even if it is just an auger to clean out my feeding tube!

56 Nothing

Creative juices dried up.  I'll try tomorrow :(

55 The Last Spike

11 December 2016

Today was a historic moment but I forgot to take a picture. For many weeks now the equipment and junk in our garage has been gradually tidied, stored or just thrown out and this morning only a few small items remained. I had calculated that with my limited energy I would just be able to complete the task before the forecast snow storm. I felt a bit like Lord Strathcona when in 1885 he drove in the last spike of the CPR.

The timing was perfect because Cheryl had been called out as an emergency replacement to make up a table of four for a cribbage breakfast in Williamstown. I knew I could complete the task in her absence so when she returned in her car she could drive into the garage. I had told her nothing of my plans so I knew she would be overjoyed at the long awaited opening.




The task was accomplished in time and Cheryl was very happy. I was also happy and relieved that with just a few millimetres to spare there was enough room to launch the snowblower with both cars parked in the garage. So, we are ready for snow!

 

I am feeling quite exhausted this evening because I did my half hour biking as a celebration of the garage completion and this afternoon Bill dropped in to help me with further chores outside. I really should just plan one task per day but there is a huge satisfaction in being able to cross items off a list that has existed for a long time. It's very hard to resist the temptation to do just one more thing. It's almost like a narcotic addiction!

 

54 Busy Doing Nothing

10 December 2016

I did everything right today. I slept late (for me) till 5:15, had 2 naps and rested a lot. I also avoided tasks requiring exertion and for exercise I walked slowly for half a km.  This is exactly what I am supposed to do for recovery but I have a deep feeling of frustration that I have been so unproductive. There are many tasks around the house and outside that I would normally be busy with but they are not allowed or possible.

Cat to the rescue!  I just looked over at our cat Blaze asleep on the back of the sofa and realized that his day was even more unproductive than mine. So, then I Googled "Busy Doing Nothing" and there were a huge number of images with this theme and cats occur in them quite frequently. Clearly Blaze is a good example of a day well spent.



One of the reasons that in recent years I have enjoyed going to Florida and living on the beach for March and November is that there is nothing to do and I can do nothing without any guilt. I was reminded of this today because we had a visit with Richard & Christiane who often accompanied us on our trips South. They were showing us some  pictures of their time on the beach last month.

So, I realize I have to do some more work on getting comfortable with not being productive in my normal way. I can console myself though by the idea that on a cellular level a lot of good work is going on and that should be my main focus for quite a while. The job list can wait!

53 Communication

9 December 2016

It's Friday evening now and I have a very full tummy after a record six boxes of Resource and 2 litres of water. This is my weight gain diet and I have to move very carefully so I don't spill any!

It was destined to be a low energy day today and my first clue was after my thirty minutes on the bike exerciser I promptly fell asleep when I stretched out on the mat to do my core exercises. It was only a short nap but everyone is telling me to listen to my body and rest lots, so I quit the exercises. Later in the morning I decided to have an official nap and Blaze volunteered to keep my feet warm for the full hour. Cheryl took this picture when I woke up.

One of the reasons I started the blog was to manage the flood of "How are you doing?" emails. At the time I was getting swamped with these requests and I thought a blog would be a simple way of keeping people informed. The address list for the blog grew and grew until it reached about 75. Many of the people didn't even know I had been ill so of course, they wanted to know more. The end result is that I am now getting huge numbers of emails and the inbox is growing faster than I can manage.

Possible solutions (I will pick one):
1  Stop paying my Cogeco bill so my internet is cut off .
2  Blow up the computer.
3  Spend the cold Winter months resting in a wilderness cabin in Florida with no internet.
4  Pretend I have had a stroke and can't remember how to turn on the computer
5  Accept your email comments on the blog but make no response.

No cats will be harmed if I choose option #2

52 Food

8 December 2016

Yesterday I was feeling a bit sorry for myself because there was a possibility that I would still be on tube feeding.and miss my Christmas dinner.  I know that coping with any kind of hardship or problem is all about having the right perspective. One of my friends gave me the perfect perspective for this issue in an email today.



He said "You do realize that a good third of the world would kill to have a bottle of nutrients running into their stomach via a tube through their nose while twiddling their thumbs, sitting in front of a TV."  Now that is powerful medicine; an instant cure for self pity!



Us older folks have gone through life accumulating a whole range of perspectives. The memories of the difficult times that we experience help us deal with hardships in our present lives.  Young people are shocked to learn that we didn't have cell phones and that my first experience of TV was at age eight and there were only two black and white channels.  Of course we do sometimes exaggerate as in one of my favourite Monty Python skits:-    https://www.youtube.com/watch?v=VAdlkunflRs

Today we met with our local dietician and decided to increase my daily calories to prevent my gradual weight loss. My breathing seems to be a little better but it could take several weeks before it returns to normal. My big treat today was driving into town to see my family doctor to chat about cycling and renew my prescription for pain medication. I have meetings in Ottawa on the 15th and 20th December with the radiation oncologist to review my swallowing problem and the results of the radiation treatment.
 

51 Turtles

7 December 2016

I am slowly getting used to the idea that this might be a food-less Christmas with the strongest drink being de-fizzed soda water! I think one of the treats that I will miss the most and always overdose on are Turtles!

OK, I am just making myself miserable by thinking about something that might or might not happen in the distant future. How silly and why not just live in the only time we have, which is the present?  Well in this present I am sitting under a food bag with a tube into my stomach via my nose. I'd rather think about Turtles!

I did make the important discovery today, that I can run the food bag much faster. I had a mildly unpleasant feeling of fullness if the drip feed was more than 2 drops per second but it's fine to run the flow much faster and then the whole process is over much more quickly.

This morning I exercised on the bike and this afternoon Bill helped me move and store some of the heavy equipment (Junk) in the garage. Now we will be able to drive the 2 cars into the garage away from the snow. I have minimized the tasks but feel that I am neglecting my machinery by omitting some of the important maintenance tasks like oil changes. But that can wait till Spring when I should have more energy. As Clint Eastwood said, "A man's got to know his limitations."

50 Grey

6 December 2016

It is late and it has been a long day so here is a quick summary. Today was a session with the Speech and Language Pathologist and an x-Ray video machine. I had to eat and drink a variety of liquids coated with Barium while the X-Ray machine took a video of my swallowing. Here is a link to a similar video although not as detailed as the one I had today.


https://www.youtube.com/watch?v=BrtpYnz4mOw

My swallowing difficulty developed during radiation and the results show there has been much improvement. There are continuing problems with the Epiglottis not having a full range of motion so more recovery time is likely needed before I can get rid of the feeding tube. It is important that the system work well so food and drink can't enter the lungs and aggravate the pneumonia. On the 15th we get the full results and decide on a plan of action.

This means that I may have to skip the Christmas turkey this year. What shall I do while the rest of the family are gorging themselves on delicious food?  I think I will be the official photographer.

49 White

5 December 2016

Part way through this morning I realized that although Cheryl is the impulsive one, I am quite impatient when I have figured out the direction I want to go. I am certainly impatient to be not a patient.
I understand now that cutting down on the morphine has to be a long term goal and not easily accomplished. Encouraged by early success I speeded up the process too much and suffered the consequences.

This need to be patient was echoed by advice from friends throughout the day and I thank you all for your feedback. You will be happy to know that today I drank 0.5 ml of morphine to make up for the deficit in my dosing and within 15 minutes - I was feeling better. Such a small amount; hardly bigger than a raindrop but what an amazing change.



The year 2016 has not been a good one for me in some ways and with the end of the year  approaching I think I was in a hurry to be well. It is silly now because I will be well when it's the right time, however long that takes.

I do still need supervision though because I confess that this afternoon I couldn't resist the lure of the snowblower sitting lonely and neglected in the garage. Cheryl was out with a friend snowshoeing so I took the machine out for a little exercise to move the snow the township plow had dumped at the end of the driveway. I wrapped up well and took it slowly and you will be glad to know that there weren't any negative effects and the feeling of accomplishment was worth the small effort.

48 Black

4 December 2016

I was alone much of the day because Cheryl took a large mirror into Montreal for our son Mike.
The day started out well with a 30 minute session on the exercise bike and I thought that another reduction in the morphine was due. For a long time I had been on 2mg every 4 hours but had reduced that to 1.8mg and then 1.6mg over the past 2 weeks. Only small changes but each one difficult for a day or so. Today's change to 1.4mg hit me really hard. Perhaps being alone was a factor but I descended into a black hell.

I knew it was just withdrawal and all those nerves that had been asleep with morphine were free to signal pain. Every perception was distorted into the negative. All my usual strategies were not helping. I have been having some of the same pain that I had a few month ago so I started to have thoughts about the treatment not being effective. I could not redirect my mood.



It is now 4 weeks since the radiation finished and my neck has healed well and looks better than before. Even some of the scars from the 2013 surgery are now hard to see. I am able to swallow so the end of the tube feeding should be near. But none of this made a difference. So, I took just an extra 0.5gm of morphine to erase the dose reduction and within 15 minutes I felt better!

One of my first jobs in Canada was working on an inpatient addiction unit so I knew the difficulties but this experience is giving me valuable insight into how hard it is go through the torment of withdrawal.

47 Loneliness

3 Deccember 2016

Yes, that's me in the picture on the left but I'm not in bed yet. Bedtime will be about 8:30 pm! I entered "Introvert" as a search in Google and this image caught my immediate attention. About 40 years ago Cheryl gave me a personality questionnaire and I scored maximum on the scale measuring introversion. Cheryl, as you could guess, scored quite high on the opposite scale, extroversion. Well, I guess it's true that opposites attract; she talks, and, I listen!  You may be wondering what this has to do with my health but right now you are reading about a rarity - a lonely introvert!  I love time alone and when Cheryl is away on trips I spend just the right amount of time with friends but bike alone, hike, read books and take photos etc..

Now, much of my day I am sitting connected to a feeding tube. My lungs are weak so going out into the cold air is not good and any physical or social effort quickly exhausts me. What this means is that for my health I am almost in solitary confinement. There are several friends that I would be normally spending much more time with and I miss them and for one of the first times in my life, I feel lonely. Cheryl does her best and often suggests inviting people around but I know my limitations. So, my friends I apologize for not visiting or calling but by next year I should be almost back to my normal introverted self!

It seems that aspiration pneumonia does take a long time to heal and it is frustrating not to see any significant progress each day. But, today I was on the indoor exercise bike for 30 minutes, I did some core and strength exercises and walked (well insulated) around the garden twice. I am also doing OK on my reduced dose of morphine so things aren't so bad.

46 Rest

2 December 2016

The extended visit to the hospital yesterday was more tiring than I expected. I did ride my exercise bike for 20 minutes this morning but instead of doing my intended weights or core exercises after,  I chose a nap for about the same 45 minutes.💤💤💤



I did some vacuuming later in the morning - bad idea - add 2 week to recovery time! Both of us were feeling nauseous today which is likely the tail end of the bug we had over the weekend. My solution was to flow the Gravol into my feed tube since I don't want to vomit the tube up. Actually, I do really and I will say "It's not my fault; it just came out!" Cheryl's solution to the nausea was to eat large quantities  of plain saltine crackers with a thick layer of peanut butter. The very thought of that started my stomach churning in revolt!

So, not much inspiration today but Cheryl did comment on my study looking a lot nicer and she asked what I had changed. I told her that I had just used the vacuum cleaner to change the colour of the carpet so that is progress of a sort. I like the organized chaos of the room so I never let our cleaning lady come in. She only comes for two hours every two weeks but I think I may ask her to vacuum my carpet in future.

So, good night and sleep well.

45 Hospital

1 December 2016

We spent three and a quarter hours here today. We are too small to see in the photo even though I waved at the helicopter. Most of the time I spent sitting in a wheelchair playing solitaire on my phone. I won quite a few games but didn't break any records. The wheelchair was because it had a post to hang my I.V. bag of food on for my 11:00 am tube feeding. The waiting room was large and quite full. It created quite a sensation when I suddenly sprang up from my wheelchair (when the feed bag had emptied) I am sure that many of the surprised patients were muttering to their partners "Look, he can walk, he can walk, a miracle." I hope it gave them new faith in the healing powers of the hospital!

OK, back to the start. We arrived at the Lab as requested at 10:00am and I was boosted to the front of the line at the Lab for my blood letting since the Doc would want the results a.s.a.p. for his 11:00 am appointment with me. Then we proceeded to the waiting room.

At about 1:00pm my name was called and we proceeded to the treatment room. We met with the radiation oncologist and he was very attentive to some of the unusual symptoms I had experienced that morning and he spent some time peering down my throat. He pronounced my blood work OK and handed us over to the Speech pathologist. She was extremely helpful and described the barium X-Ray video we would be doing next Tuesday. She also had me drink some soda to get a rough idea of how my swallowing was proceeding. We were quite surprised that I seemed to have little difficulty despite the fact that I hadn't swallowed for over a week. Considering the long wait to see the clinicians, they were very efficient and we were out of the hospital by 1:30pm.

So, we are moving forward but the important test is the one next Tuesday. I have permission to do a little practice swallowing as training for Tuesday's Olympic event!
 

44 Ups and Downs

30 November 2016

Ups and Downs

I think there were two reasons for my starting the blog. One was to reassure people that I am doing well. The other reason I think was to reassure myself of the same thing.

In my Blog I am at my best and most positive and that is an important place to know well. There are plenty of times when I am not feeling so good and the Blog guides me back to that better spot.

When I was young my mother always had a list of issues that prevented her from being happy. She was also a great worrier about things that could go wrong but likely never would.

 On one of our weekend trips to visit her family she was upset the whole weekend because she couldn't remember if she had unplugged the electric kettle before leaving home! Observing her has helped me to see the wisdom of living in the present. It's a idea that has been identified many times but it can be hard to do.

I think a blog helps me to find the golden moments in each day and that is a real help when going through difficult times.