Welcome!

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.

Tuesday 20 December 2011

communication is key!

I have formulated some conclusions based on extensive empirical study. One - two out of five nurses are competent enough to nurse. Two - common sense and communication, particularly by nurses, is so important but also so very lacking. Three - time budgeting is a mystery to which no adequate or convincing explanation has been given. Four - the ratio of nurses to patients does not mean a whole lot. And fifth, stay away from the grilled food in the cafeteria including the visually and olfactory appealing stir-fry dishes. The experiences of today only served to support these conclusions.
 
However, the main subject of the update is of course Laurie's present health. Much has happened since the last posting. Laurie was moved to the seventh floor Neurological Inpatients Area on December 12th sometime after I had left that evening. There was some scuttlebutt about the NOA that Laurie would be moved but this had been cancelled on at least two occasions when I pursued the subject. Apparently, the cost of having a patient in the NOA is $1,200 per day. However, my information source may be as reliable as some of the nursing staff and be way off (OK - I won't dwell on this topic...).  So, arriving on Tuesday, December 13th I found myself in Laurie's room which offered a nice view towards Agriculture Canada. She knew this and realized that her grasses were close by in a green house.
 
Now being up on the seventh floor Laurie was set to receive some physio and occupational therapy. She has had visits by these people each day since being there and in the eyes of these people she is getting stronger and healthier and able to indicate progress in several areas. Her appetite is very good with three pretty good efforts each day at eating the food which is typically ground - ground chicken / beef / turkey with mushy peas / carrots / broccoli  and cream soups of the mushroom / carrot / broccoli variety. She is consuming a high protein liquid beverage produced by a major pharmaceutical company in Canada. She is eating desserts - usually a fruit (pieces or in crisp form) and a pudding / Bavarian mousse. Fruit juices prevail as does milk and water. The feeding tube that Laurie endured for so long was removed on December 15th. It seemed that the removal of the tape caused her more discomfort than did the removal of the 70 mm length of plastic hose. I sort of watched the on-goings here but was just happy that this day had come and she turned another corner. Generally, she remains very quiet but seemingly to understand or follow a conversation. Her speech was the most difficult element to come back after her first operation and it appears to be the hardest as well now.
 
We had a visit from a staff member of her radiation oncology team and also from the chemotherapy oncologist himself. The main point of what I was told was that Laurie's surgeon and the oncologists were laying out the ground work for the next step(s). At this time the plan has not been disseminated to me. However, it seems that Laurie may have more of the Temodal and for more days in a month than the previous session of receiving it (five days each month). I did ask to speak with the surgeon today (Dec. 19) and apparently he would see me late this afternoon. However, he did not come by the room. Hopefully he will tomorrow and I will be able to get answers for the five questions I have prepared.
 
On Saturday, December 17, Lisa, (ed. note: Laurie's sister), returned. I told Laurie the day before that she was to have a visitor on Saturday. About 10:45, Lisa arrived. Laurie opened an eye a while later, but did not recognize her and she drifted back to sleep. An hour later, at lunch time, Laurie realized who was there and she smiled and seemed quite pleased. During Lisa's vigilance, I snuck out and got the oil changed in the car and had some lunch in the cafeteria (the lemon sole is recommended). As is typical, Laurie is not alone until past 19:30 or so. Earlier in the week, I left at 23:00 as the nursing staff must have been attending a conference or a Christmas party someplace and there was no one to help her (sorry but I can't help this.)
 
Lisa drove up to the hospital first thing on Sunday morning (Dec. 18). She was there to get a great parking spot and to assist Laurie with breakfast. I did a fairly massive shopping expedition to the local grocery store. What a good time to shop actually. There were as many store employees working as there were customers. Not only did I get the choice of a great parking spot and some the vegetables, I actually was able to buy some stuff on sale that usually has been long gone whenever I shop. So, a few hundred dollars later (about five carry bags worth) I headed to the house and found space in the refrigerators and freezers for everything. Then, I was off to Ottawa to join Laurie and her sister.
 
We had a nice time together. Lisa departed in mid-afternoon for her drive back to Gravenhurst. Fortunately, the weather here has been amiable to driving but it sure does get dark here fast (yes, I know, the Winter Solstice is darn soon). I stayed until about 19:40 and made it home by 20:20. I wish the drive every day was like it is on Sundays.
 
Today (Dec. 19) was a tough day for various reasons. However, a lack of common-sense, poor time allocation between patients and non-communication issues will inevitably lead to various disappointments. In particular, Laurie has been moved from a comfortable, (as much as you could get I guess), room with one other woman to a room with two other women. I couldn't get a satisfactory reason for this change from the nurse. So, I packed the meager belongings that we have for Laurie there in preparation for a move later in the day. After Laurie's lunch, I wrote a note to the nurse indicating that I would be back by 13:40 as I was going to the cafeteria in search of lunch. When I got back to the room at 13:35 or so, Laurie was gone. Good grief. The nurse could have told me that Laurie was being moved imminently and I would have stayed. So, I got pretty huffy and puffy when asking where Laurie was. The morning nurse did later apologize for this but I could not accept her explanations very well. I was pretty miffed then and continued to be when Laurie's new nurse seemed to spend an inordinate amount of time elsewhere. This nurse was supposed to have four patients. Three were in the room where Laurie was. So, I presume that she spent 80% of her time in another room with the other patient. My blood pressure reading would have been impressively high at this point.
 
Towards 19:00 and nurse shift change the nurse gave the lady beside Laurie a hot cup of tea and then she left. So, about two minutes later, this woman is screaming about 1 meter away from Laurie. Well, she dropped the tea cup on her chest and was getting scalded. Ummm, maybe the nurse should be enrolled in Common Sense 101 again. I got a hold of a nurse by going into the hallway and they took over. The nurse alarm for this patient was no where in reach. These events give an idea why I spend so much time at the hospital. Laurie has a big enough hill to climb without all of these types of daily obstacles popping up for her to resolve.  
 
I do not know if Laurie will be coming home for Christmas. I cannot see her remaining there much longer given that there are no medical interventions taking place. She has no IVs, no daily blood tests, no more than one or two BP and temperature readings a day and no heart monitoring. She is eating well and walking a little. Bed rest is part of the equation and she can certainly do this much better at home. At one point in time, it was mentioned that Laurie may go to the local hospital near our home to convalesce. I have not heard anything for a few days now on this and I can't imagine her being moved there at this point. For some reason, in the back of my mind, I feel that they will tell me tomorrow (Dec. 20) that Laurie is being discharged. A day's notice would help but I am prepared for this outcome.  Laurie is certainly not in the Christmas spirit but I will try and make the best of holiday for her whether she is in the hospital or at home. The presents that I have bought her (I always pick things up over the course of the year and squirrel them away) are in a packed-away box in the basement. I guess that I can always gift wrap a 500 ml tub of Ben and Jerry's ice cream.
 
We have received an impressive number of Christmas and get-well (again) cards. I have not opened any of these yet. I will wait for Laurie to be here and I know that she will enjoy this thoughtful and often overlooked or undervalued part of the holidays.  I do hope to have another update posted by this Friday to let you know how and where Laurie is. Did I mention that the nurses will be on a holiday schedule starting Friday......
 

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