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Laurie had a serious brain lesion that was surgically removed on July 24, 2011. It was uncertain exactly what the disease was and to me, these days were really the fight for her life. After the surgery, Laurie spent two weeks in an Ottawa, Ontario hospital. This period was full of events relating directly to her and to other patients and aspects going on in the hospital during her stay. Laurie came home on Friday, August 5th, 2011. Since being at home, events have settled into a routine but not without the ups and downs of recuperating with a rare brain tumour. Her story is one of hope, struggle, patience and above all, courage. The current update is presented at the top of the page with her day-by-day story presented from the bottom upwards.
This story also has pictures of Laurie. She is a woman of many interests and dimensions. She and I love to travel and September has been our favourite time of year to do so. The trips taken over the past six or seven years have seen us in places like western and central Scotland, Iceland, the Faroe Islands, New Zealand, Australia, Cape Breton, Charlevoix, Ireland and to Newfoundland a couple of times. The first things that Laurie always packs are her plant press, silica gel bags, binoculars, loupe, botany reference books, bird books, hiking books, note books and always a good raincoat. If there is any room left she packs some clothes. You can usually recognize her at the airport because she is one with three or four layers of clothing on.

Monday 15 August 2011

The Road to Recovery, con't

August 9, 2011 (Tuesday)
Good morning / afternoon / evening everyone -
 
Based on the pathology report and Laurie's discharge from the hospital, I have optimistically changed the original subject to a more positive one. My intention is to continue providing you with the events that have occurred along Laurie's Road to Recovery. The frequency of the notes may be less than in the past. The events of the days to come will likely be more uniform as the environment is one of quietness and familiarity. Each day, or each hour in fact, in the hospital can generate enough interesting happenings to weave a story from. Here at home the recovery is apt to be a slow process that hopefully will display some measurable progress. The rate of this may not be seen in days but more realistically in weeks and months.
 
Having departed the hospital, I can describe the experience there in a number of ways. Some of these I have already noted. However a few days ago I came to realize just how scary it can be for the uninitiated - like me. Two things happened that day which made me think of the hospital as scary. The first was early in the morning when I saw someone who looked like Stephen King speaking with a man in a nice tailored suit and a snazzy silk tie. I took this to be some influential hospital administrator showing Mr. King around. I then happened upon Mr. King on Laurie's floor, note book in hand, and asked about his being there. He said that he was researching a new book as his ideas involving large dogs, mindful cars, traveling through the real desolate parts of Nevada and other such plots had run their course. "Something scary" he said - that was his purpose today. "Well" I said. "If you have some time and would like to buy me a coffee I can tell you a few things". "Sure" was his response and down we headed to the main floor. He asked about my experiences over the past two weeks. I said "Mr. King, I have read several of your books and sure they were scary. But, and I mean this, this place is scarier than anything I have read written by you". "Oh, how so?" Then I began. "Alright, let's start with some key words and hold the details for later. Catheter, convulsions, resections, colostomy, hematoma, clotting, drainage, titanium rod insertion, haemorrhaging, transfusion..." and so it went. Mr. King stopped writing and looked quite pale. "This is really too much for even me" he said. He then got up, left and caught a cab back to the airport as I finished off his dutchie. And to think that I had not even begun to mention things like Helicobater pylori, cardiomyopathy, hemarthrosis and gasrectomy. So there you have it....pretty scary place these hospitals.
 
The other incident occurred on the seventh floor as Laurie and I were standing in the hallway deciding which direction to walk. There suddenly came piercing screams from a woman who was not far away. Words like "Oh gawd" or depending on your interpretation, "Oh God", rang throughout the floor. She screamed several more times which sent a shiver up our backs. This determined in which direction we took our walk. The sounds of pain and anguish, either real or imaginary, could be heard as we turned the corner and decided that practicing stair climbing was in order.  By the time we went back the cries had ended but they lingered in my mind for the rest of that day.
 
Now, one of the above events is quite fictional as you may have guessed. The other was not though and I will probably remember this any time I go near a hospital again. The keywords are real however and represent only a small list of scary topics one can find in the hospital.
 
What can be scary is the level of communication between the staff and other staff and that directed to patients and the family of the patients. On a number of occasions I feel that communication was very poorly made. It would be great to have walked in each morning and be presented with a "What is Going to Happen Today list ". I would like to know if three persons are planning to see Laurie, who they are and about what time would they be coming. This would help us arrange our own schedule of things like taking walks, going outside for a while or me popping out to get something to eat downstairs without missing anything. This is where the order I wrote about is definitely lacking. I have heard people remarking that something should have already been done by someone else and that a follow-up will be now be needed. Some of the staff have two pagers and a cellular phone on them so communication should not an issue. No, I do not expect precision timing for those planning to come and see Laurie. But to have absolutely no idea what is supposed to take place that day is sloppy communication and is probably avoidable with a little more planning. It is especially an issue when two persons are essentially coming in like conjoined twins for completely different reasons. This reminds me of a story that I will conclude this note with.
 
 
August 6, 2011 (Saturday)
Having Laurie home is a win, win, win situation. Great for each of us and good for the hospital administrator who is trying to avoid putting newly arrived patients in the parking lot or bus shelters around the hospital. Many of you have sent us their best wishes for this next part of Laurie's Road to Recovery. We thank you for this.
 
Last night was a rough one for Laurie. Her dinner did not stay very long with her and I believe that it was probably a little too spicy or different from her food over the past two weeks. I must be more aware that anything more than salt and pepper in her food may cause her some stomach issues.  She slept restlessly and we got up to visit the bathroom almost every two hours. This morning's breakfast of half a bagel and some yogurt, tea and a coffee mid-morning was later returned. She had a slight temperature that a Tylenol seemed to take of.  We set up a chair in the shower and she washed her hair after two weeks of not being able to. This was definitely a pleasure for her. Into some "lounge wear" and feeling pretty good she headed out to the front deck where she listened to the sounds of summer. Various birds, insects, a tree frog, our chipmunk friends and black squirrel nemesis, Harley-Davidsons and lawn tractors.
 
Lunch was not really touched as she could not handle the soup or the ham and cheese sandwich. The afternoon plan was simple - rest in bed, drink when possible and let me know when the bathroom is needed. We used to have about a dozen bells about the house - something that we sort of collected at antique shows and flea markets. Do you think that I can find one now? So, if Laurie needs me then she uses a metal letter opener and a metal cup. The only alternative that I could think of is that compressed air canister that is used to scare off marauding bears. Activating this indoors may cause me to have a heart-attack and waking up the village folk. So we stick with the primitive method of banging two things together until I happen-chance upon a little bell.  
 
Dinner came and went without a bit of food for her. Some water and that was about it. The mandatory pills were taken with some yogurt. The BP machine I bought seems to function alright. It also gives a heart rate. I learned by first trying this that the big Velcro patch does not go against your skin. If so then reread the instructions. I have made an Excel file to record the BP, HR and the temperature that are taken several times a day. There is a column for notes - good and bad. I figure that having this with us when we go for the follow-up meeting with the surgeon could be useful.
 
August 7, 2011 (Sunday)
Another warm and humid summer day here in Oxford Station. Several trips made last night (11:50, 02:45, 04:20) to the bathroom with the in-between times being calm and restful. This morning Laurie had half a bagel, some yogurt and juice for breakfast. Pills are taken with the yogurt. As she was not able to hold her food yesterday it is important to pace the intake slowly. No tea or coffee though. She very much likes both but I have suspended these as one of the prescriptions suggests that these beverages may upset the stomach. I know that water is a poor substitute for these hot drinks but there is a variety of juices for her to select from as well.
 
A very lazy summer Sunday. Basically slept. Lunch was the other half of the bagel and some more yogurt. Dinner came at 17:30 and was a fried egg, more bagel, one half-piece of bacon and some lemon pudding that I made. She is exhausted which is probably due to serious sleep deficit over the last two weeks. Although she was sleeping it is the lack of good sleep that she had. A few laps around the front deck and called it a day. Vital signs are good as long as the instruments are accurate.
 
I spent many hours cleaning up the computer files. This is something that I always said I wanted to do when I had time. Now I do. I am right beside the bedroom so if Laurie needs anything then I am right around the corner. Light rain this evening was nice to have. It patters off a little back shed steel roof which is pleasing to listen too when resting (just as long as it is not coming down in a torrential downpour that is.)
 
  
All night the sound had   
come back again,
and again falls
this quiet, persistent rain.

What am I to myself
that must be remembered,   
insisted upon
so often? Is it

that never the ease,   
even the hardness,   
of rain falling
will have for me

something other than this,   
something not so insistent—
am I to be locked in this
final uneasiness.

Love, if you love me,   
lie next to me.
Be for me, like rain,   
the getting out

of the tiredness, the fatuousness, the semi-
lust of intentional indifference.
Be wet
with a decent happiness.
   Robert Creeley, “The Rain”
 
 
August 8, 2011 (Monday)
It was rather nice to sleep in today and not make the commute to Ottawa. This is one big advantage for me having Laurie now at home. I think that my highest level of anxiety each morning was during the commute as my mind wandered into various concerns. Laurie slept in for a while after I got the day started. Her breakfast was light and she held it well. The rest of the morning saw her having a nice shower followed by some sitting up to talk and looking through a magazine. Some pre-lunch resting filled the rest of the ante meridiem.
 
Lunch was small but tasty and she appreciated the fact that it was a one way trip. More non-Tylenol aided rest during the afternoon. Laurie is resting in a few different places in the house. This is to give her different levels of comfort and environments. She likes the "magic dream couch" in the living room but then again so do I and others who have laid down on it. Dinner was basically breakfast at 18:00. However, the food is suitable for her and she makes no fuss about this. Laurie is usually the egg chef but this is something that I am comfortable in doing. It also helps to know the basics in the kitchen. I learned this from a book called "How to Boil Water" that I had in my university days. We have moved onwards to the Moosewood Restaurant recipe books which are a real treasure. If you are ever in Ithaca, New York, then treat yourself by dining at the restaurant.
 
We watched The Dog Whisperer tonight and she enjoyed the show. This is the first program on television that she has seen for a few weeks now. It is really amazing how many commercials one must sit through to watch a 60 minute show. I really want to thank the person who came up with the idea of the mute button on the remote control. Come to think of it, I would also like to thank the person who invented the remote control.
 
To bed reasonably early but followed by some late trips to the bathroom. This is something that I will need to get used to. As her blood pressure is somewhat stable now, the fear of her fainting is not a big issue; but it is still something that I pay attention to.
 
August 9, 2011 (Tuesday)
The daily routine is beginning to take shape now for both Laurie and myself. I was thinking ahead to my retirement days some time ago and wondered what it would be like to be a "house husband". Well, I guess that I am finding out. Of course, the house husband I was thinking of had Laurie heading off to work every day - including some of the weekends. So, this is a variation on a theme. I would prefer the latter retirement situation.
 
We had a home care worker visit today. This is a program that one can arrange for up to 15 hours per week for no direct charge. They call this "respite" care which enables me to head out and get some things done. Today, I went to the pharmacy to pick up a prescription, buy some groceries, get gas and go to the bank. All this in one hour and twenty minutes. When I returned Laurie was basically asleep and the home care lady was sitting in a chair. Apparently, this lady has been doing this for over 24 years now. I would think that she has probably seen everything by now. By comparison to others, I believe that Laurie will be an easy patient within a good environment.
 
The plan is that two days each week someone will come and sit with Laurie. The next visit is for three hours this coming Friday. I will likely drive into Ottawa and do some work on Laurie's plants in the green house. The following week's schedule is for visitations on two days for three hours each day. I am wondering if Laurie falls asleep whether the home care person could possibly help me clean the rain gutters.
 
For the third night in a row, Laurie has been making nature calls. I have asked her to nudge me about this. I am a very light sleeper so any movement by her tends to get me stirring. I get up to ensure that she makes it to the bathroom and gets back to bed safely. The calls seem to come at two or two and a half hour intervals. So, although we sleep eight to ten hours, this is not continuous. No matter how long the sleep period is we seem to be tired when we do get up.
 
Laurie is still not drinking tea or coffee right now. This is a suggestion made on those detailed prescription information sheets you get from some pharmacies. As many of you know, Laurie likes both of these beverages, morning, afternoon and evening. It is for her best health that she avoids these drinks and she knows this. I try and be very quiet in making myself these drinks. However, since the house is so quiet and her ears are so good, any noise travels to her quite easily. Opening the Oreo bag has to be done in the garage now.
 
Later in the week we are scheduled to see a radiation and a chemotherapy oncologist in Ottawa. These meeting will likely start Laurie on her next steps down her Road to Recovery. I will let you know how she progresses. I must thank those of you who have kindly sent Laurie flowers and for the nice cards. She can read the cards with her reading glasses on, and knows who they are from which is excellent. She has some difficulty in identifying all of the different flowers in the arrangements. I am sure that she will be improving her memory and that she will soon be giving me the Latin names of flowers that I know as roses and daises. She also has a speech therapist coming to the house soon which may also help her in various ways. That is certainly the hope.
 
To end this note I will relate the story of the twins conjoined at the shoulder - Robert and his brother Mike. The brothers liked to travel and found themselves in a quaint English village on a rainy June afternoon at the Lion and Heart pub. As they walked in the publican bid them a good afternoon and asked what they would like. Robert ordered a Shepherd Neame real ale and his brother Mike, on the right, asked for the same. They took a nice table in the corner and enjoyed their beers and the atmosphere of their surroundings in the 19th century pub. A while later the publican caught their eyes and Mike ordered "Same again please". This time the publican brought the pints over as the bar was a little busy due to those villagers bestowing their patronage as the rain became a little heavier. However, he wasn't in that much of a hurry that he could strike up a conversation. "So, what brings you gents over to England....I would guess that it is the good beer?". "No, not really" replied Robert. "We do like it and it is so much better than the slop we get back home."  "Well then" said the publican. "It must be the incredible history of our country".  "There certainly is lot of that around" said Mike "and we have read and seen much of it already. You see, we try and come here every couple of years". "Then it must be for the scenery" said the publican. So much of it and quite different if you take the time to look.". "Yes, that is true but it is not the main reason why we like coming over" said Robert. So naturally the publican asked "So, what is the reason then?" "Well" said Robert, it is the only time that Mike really gets the chance to drive."
 
Good night from Oxford Station -
 
Mark
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