Every night is the same.
All I do is go over every minute from the time Elvin and I were in the garden on that Monday, until he died 15 days later.
It should never have happened, I am convinced. The 2 days in Emergency in Niagara Falls, were the beginning of the end. After he finally was transferred to ICU on Thursday morning at 3, ... he was unable to communicate, was unable to breathe without a mask and finally a ventilator.
I watched everyday as he slipped further and further away. He had morphine for pain, ... but did anyone know where the pain was. He was sedated so that he would not struggle, ... but why was he struggling. He was given massive doses of antibiotics that did not work and were started too late. I am not supposed to be angry, ... but I am.
I lost my rock, ... my leveler, ... the man who was a joy to live with every single day, ... we could laugh together, ... I could make him laugh,... life was good and happy. I was so fortunate to have been able to be with him for the 7 years we did have.
The Premier, the Minister of Health, Juanita Gledhill, Debbie Sevenpifer, ... these are the ones responsible for the conditions in our shrinking hospitals that make tragedies like my husband's death possible.
This is not over, ... the mess these people have left the Niagara Peninsula's health care in has to be made right. They have to listen to the doctors and nurses who are fighting for what they know has been taken away and must be returned.
While I still hoped Elvin could fight his way through those horrible 2 weeks, I could sleep. It was an emotionally exhausted sleep, but it was sleep. Anger isn't allowing sleep, ... anger is destructive, ... I know I have to let go of anger, ... in the daytime that is possible, ... there are things to do. When I lie down at night all I can do is think, and wish for that wonderful warm hand to hold mine again.
I go to bed trying to make sense of all this, and I wake up doing the same.
Wednesday, June 23, 2010
Thursday, June 3, 2010
We Wait
We did not make it to Hamilton. Elvin is too sick to be transported. He has a lung infection.
I am home and emotionally exhausted. When we went to his room in ICU, ...he was moved there as of this morning at 3 AM, we were told he had had a bad night. There was a cool, wet,white wash cloth on his forehead as he has a high fever, and an oxygen mask over his mouth and nose and his breathing was laboured. It remained laboured all day with his heart rate bouncing from 103 to 120. I stood and willed those numbers to change and prayed for God's intervention, ... and they remained the same. I could not stop the tears.
This is a strong man, ... strong of heart and strong of character. It is wrong to see him this way, ... I want to breath for him,... to give his heart a rest
His 4 sons were there to-day, ... they each were shocked, and devastated to see their father so vulnerable. There were tears. He told them each he loved them and to them this meant he was saying good-bye. I don't feel this way yet as at one point he asked me, "How long will I be here?" These are the words of someone still fighting.
Antibiotics were ordered from the hospital pharmacy at 10:30 AM, ... they arrived 3 hours later. That is too long a wait for a very ill 77 year old man with fluid on his lungs and severe coronary artery problems, ... but the NHS and the LHIN will not hear this. BUT, ... they are going to hear it!!!!! Somehow they have to stop pouring our money into a Mega Hospital and take care of the people left behind. This is one concern of my husband's doctor in the hospital, that so much money will be spent on the new St. Catharines P3 hospital that there will be none left to fund the 3 remaining ones that are just limping along now.
There is so much more to say, but this has been another very hard day and I am very tired once again.
Elvin's second son called me on his way home to Stouffville at 7:30 after visiting his Dad once more to-day, ... he had a very hard time talking through tears, ... he has very bad feelings about his Dad's survival. I did my best to reassure him and will call him tomorrow. I hope I have very good news.
I am home and emotionally exhausted. When we went to his room in ICU, ...he was moved there as of this morning at 3 AM, we were told he had had a bad night. There was a cool, wet,white wash cloth on his forehead as he has a high fever, and an oxygen mask over his mouth and nose and his breathing was laboured. It remained laboured all day with his heart rate bouncing from 103 to 120. I stood and willed those numbers to change and prayed for God's intervention, ... and they remained the same. I could not stop the tears.
This is a strong man, ... strong of heart and strong of character. It is wrong to see him this way, ... I want to breath for him,... to give his heart a rest
His 4 sons were there to-day, ... they each were shocked, and devastated to see their father so vulnerable. There were tears. He told them each he loved them and to them this meant he was saying good-bye. I don't feel this way yet as at one point he asked me, "How long will I be here?" These are the words of someone still fighting.
Antibiotics were ordered from the hospital pharmacy at 10:30 AM, ... they arrived 3 hours later. That is too long a wait for a very ill 77 year old man with fluid on his lungs and severe coronary artery problems, ... but the NHS and the LHIN will not hear this. BUT, ... they are going to hear it!!!!! Somehow they have to stop pouring our money into a Mega Hospital and take care of the people left behind. This is one concern of my husband's doctor in the hospital, that so much money will be spent on the new St. Catharines P3 hospital that there will be none left to fund the 3 remaining ones that are just limping along now.
There is so much more to say, but this has been another very hard day and I am very tired once again.
Elvin's second son called me on his way home to Stouffville at 7:30 after visiting his Dad once more to-day, ... he had a very hard time talking through tears, ... he has very bad feelings about his Dad's survival. I did my best to reassure him and will call him tomorrow. I hope I have very good news.
Tuesday, June 1, 2010
Poorest Health Care in the Province
The journey is not for the faint of heart. Not the journey with Cancer, but the journey into old age, ... especially considering the state of health care in the province of Ontario...
Elvin is in hospital, ... Niagara Falls Hospital again, ... the place I dread the most and again, he is on a gurney in the Emergency. He is waiting to go to Hamilton for an angiogram following an episode of rising blood pressure, rising heart rate, and chest pain. He has been there since yesterday evening, ... very very tired and obviously unwell. He was seen by an internist at 4:30 this afternoon, a student had seen him earlier to do the preliminary questioning.
The Yellow Shirt Brigade, made up mostly of Seniors, has drawn attention to the poor health care in the Niagara Peninsula particularly, over the past 2 years. To-day we were again at Queens' Park drawing attention to our plight, ... I was to go, but would not leave Elvin at the mercy of inadequate nursing care. I will explain.
1. When we arrived at the former Emergency in Fort Erie, ... Douglas Memorial Hospital. he was triaged by a very kind and gentle nurse who would by the end of the day finish a 24 hour shift. Would you feel comfortable having her give you your medication, ... start and IV, ... I feel sorry for these women who are overworked to the point of it being to the detriment of patient care.
2. Elvin was fortunate to be hooked up to a monitor almost immediately 11:30 AM, however, ... a blood pressure cuff, necessary to monitor the rising blood pressure, could not be found, ... until 5 PM. And the Niagara Health System cuts our nurses, cuts our supplies and maintains that they have everything under control.
3. On arriving at the Niagara Falls hospital at 8:30 PM, he was placed on a gurney in the Emergency where he will likely stay, as he did the last time, for 3 or 4 days as there are no beds. The Niagara Health System has cut beds as they have cut nurses and services. A staff doctor asked a few questions and listened to his heart. My husband is on the maximum medications for his coronary heart disease. To-day when I went to visit, his blood pressure was rising as was his heart rate, ... when it got to 210/107 and his heart rate was 100, I went to the desk to suggest that perhaps they should come and do something.. A nurse came, and said they had not given him his medication and that is why it was so high, ... I would like to say I was dumbfounded, but rather was not surprised at all, ... this is par for the course at Greater Niagara General Hospital. They put the medicine in his IV and the pressure came down, .... some.
4. I called this evening to see if a bed had come available , and of course there wasn't one. I did learn however, that now my husband is running a fever. I am terrified.
It is now 11:15 and I should be in bed, ... however, I know I will not sleep, ...
Elvin is in hospital, ... Niagara Falls Hospital again, ... the place I dread the most and again, he is on a gurney in the Emergency. He is waiting to go to Hamilton for an angiogram following an episode of rising blood pressure, rising heart rate, and chest pain. He has been there since yesterday evening, ... very very tired and obviously unwell. He was seen by an internist at 4:30 this afternoon, a student had seen him earlier to do the preliminary questioning.
The Yellow Shirt Brigade, made up mostly of Seniors, has drawn attention to the poor health care in the Niagara Peninsula particularly, over the past 2 years. To-day we were again at Queens' Park drawing attention to our plight, ... I was to go, but would not leave Elvin at the mercy of inadequate nursing care. I will explain.
1. When we arrived at the former Emergency in Fort Erie, ... Douglas Memorial Hospital. he was triaged by a very kind and gentle nurse who would by the end of the day finish a 24 hour shift. Would you feel comfortable having her give you your medication, ... start and IV, ... I feel sorry for these women who are overworked to the point of it being to the detriment of patient care.
2. Elvin was fortunate to be hooked up to a monitor almost immediately 11:30 AM, however, ... a blood pressure cuff, necessary to monitor the rising blood pressure, could not be found, ... until 5 PM. And the Niagara Health System cuts our nurses, cuts our supplies and maintains that they have everything under control.
3. On arriving at the Niagara Falls hospital at 8:30 PM, he was placed on a gurney in the Emergency where he will likely stay, as he did the last time, for 3 or 4 days as there are no beds. The Niagara Health System has cut beds as they have cut nurses and services. A staff doctor asked a few questions and listened to his heart. My husband is on the maximum medications for his coronary heart disease. To-day when I went to visit, his blood pressure was rising as was his heart rate, ... when it got to 210/107 and his heart rate was 100, I went to the desk to suggest that perhaps they should come and do something.. A nurse came, and said they had not given him his medication and that is why it was so high, ... I would like to say I was dumbfounded, but rather was not surprised at all, ... this is par for the course at Greater Niagara General Hospital. They put the medicine in his IV and the pressure came down, .... some.
4. I called this evening to see if a bed had come available , and of course there wasn't one. I did learn however, that now my husband is running a fever. I am terrified.
It is now 11:15 and I should be in bed, ... however, I know I will not sleep, ...
Monday, April 26, 2010
QUESTIONS
Now, they are beginning to come, .... questions that I don't know where to go for the answers.
Through all of this, since the blockage was discovered in November, I have had a taste or smell in my mouth, or nose, that I can only describe as the taste or smell of wet newspaper. I hoped that after the surgery, this would go away, but that hasn't happened. I wonder if it is on my breath, ... if others can smell cancer in me. What is causing this, where is it coming from, will it ever go away, does it mean that the cancer is somewhere else?
One of the questions I was asked by each doctor that I saw since November was, "Are you having any flushing?", ... this is a symptom of the carcinoid tumor. My answer always was ... NO. However, recently, including this evening, I am having episodes of flushing, ... something like hot flashes, but more like warm flushes. Why am I having them now? Does this mean that the cancer is somewhere else? Will I always worry about every possible new symptom?
To-night I had a slight fever, ... does this go with cancer cells still being in my body? It could be the beginning of a cold, another bout of diverticulitis, ... but my first thought now will be, ... is the cancer growing somewhere else in my body?
My life has changed. The things I once was concerned about matter not at all compared to the place I now am. Even though following surgery, my surgeon said that all was well, ... is it really? I want to stay optimistic and I have been doing really well, ... but not to-night.
I want to feel like I did 20 years ago, ... invincible. Coming into the "Golden Years" is not fun, ... aches and pains, unsteady legs, changes in heart rhythms, medications, .... however, I would be happy with just that instead of the wondering I live with now, everyday. If there wasn't the bad taste, the flushing, unexplained fevers, ... I might be able to forget that the cells are still there and no matter how slow they are supposed to grow, they are still growing.
Maybe tomorrow will bring something good to occupy my mind, ... I must not become preoccupied with this thing, .... that only aids it in it's growth.
Through all of this, since the blockage was discovered in November, I have had a taste or smell in my mouth, or nose, that I can only describe as the taste or smell of wet newspaper. I hoped that after the surgery, this would go away, but that hasn't happened. I wonder if it is on my breath, ... if others can smell cancer in me. What is causing this, where is it coming from, will it ever go away, does it mean that the cancer is somewhere else?
One of the questions I was asked by each doctor that I saw since November was, "Are you having any flushing?", ... this is a symptom of the carcinoid tumor. My answer always was ... NO. However, recently, including this evening, I am having episodes of flushing, ... something like hot flashes, but more like warm flushes. Why am I having them now? Does this mean that the cancer is somewhere else? Will I always worry about every possible new symptom?
To-night I had a slight fever, ... does this go with cancer cells still being in my body? It could be the beginning of a cold, another bout of diverticulitis, ... but my first thought now will be, ... is the cancer growing somewhere else in my body?
My life has changed. The things I once was concerned about matter not at all compared to the place I now am. Even though following surgery, my surgeon said that all was well, ... is it really? I want to stay optimistic and I have been doing really well, ... but not to-night.
I want to feel like I did 20 years ago, ... invincible. Coming into the "Golden Years" is not fun, ... aches and pains, unsteady legs, changes in heart rhythms, medications, .... however, I would be happy with just that instead of the wondering I live with now, everyday. If there wasn't the bad taste, the flushing, unexplained fevers, ... I might be able to forget that the cells are still there and no matter how slow they are supposed to grow, they are still growing.
Maybe tomorrow will bring something good to occupy my mind, ... I must not become preoccupied with this thing, .... that only aids it in it's growth.
Sunday, April 25, 2010
A FEW THINGS
The 4 walnut halves did matter. The collection went fine, 3 days later.
I also have started back strengthening exercises with my favourite Physio-therapist in preparation for the hip surgery. I was amazed at the results of one session which was simply some traction for my lower back. My stride was longer, the pain was considerably less and the results have stayed with me since that treatment. I have 2 more sessions with the same treatment next week and look forward to getting into the garden.
My neighbour Denise, has raked all my gardens, ... I have them around the perimeter of the yard and at the side and front of the house. She has transplanted, moved shrubs, and cleaned out all weeds, ... it now looks "do-able" by me. I am changing many of the perennials that need much care, to hosta, ferns and some new sod. I also am changing a flagstone deck, full of weeds to a wooden, no care deck of the same size. I have hope again. To-day I bought a beautiful peach iris, and a Jacob's Ladder. I wish I knew how to add pictures to this and I would add them here, ... The garden is the prettiest in Spring.
My visit with the surgeon for my 6 weeks check-up went well, ... however, he wants to do another CAT-scan of the liver very soon, ... I hope this brings good news. If it is not good news, I am up for removing part of the liver that appears to still have cancer. I am still in my optimistic stage of all of this. I am reading an interesting book by Elizabeth Berg called, Never Change. The story is about a visiting nurse and her patients among whom there are cancer patients. I am encouraged by what I read, even though this is fiction, ... especially about attitude and how it affects the outcome of cancer.
My attitudes so far is good, ... and I feel well, .. and plan to stay that way.
I also have started back strengthening exercises with my favourite Physio-therapist in preparation for the hip surgery. I was amazed at the results of one session which was simply some traction for my lower back. My stride was longer, the pain was considerably less and the results have stayed with me since that treatment. I have 2 more sessions with the same treatment next week and look forward to getting into the garden.
My neighbour Denise, has raked all my gardens, ... I have them around the perimeter of the yard and at the side and front of the house. She has transplanted, moved shrubs, and cleaned out all weeds, ... it now looks "do-able" by me. I am changing many of the perennials that need much care, to hosta, ferns and some new sod. I also am changing a flagstone deck, full of weeds to a wooden, no care deck of the same size. I have hope again. To-day I bought a beautiful peach iris, and a Jacob's Ladder. I wish I knew how to add pictures to this and I would add them here, ... The garden is the prettiest in Spring.
My visit with the surgeon for my 6 weeks check-up went well, ... however, he wants to do another CAT-scan of the liver very soon, ... I hope this brings good news. If it is not good news, I am up for removing part of the liver that appears to still have cancer. I am still in my optimistic stage of all of this. I am reading an interesting book by Elizabeth Berg called, Never Change. The story is about a visiting nurse and her patients among whom there are cancer patients. I am encouraged by what I read, even though this is fiction, ... especially about attitude and how it affects the outcome of cancer.
My attitudes so far is good, ... and I feel well, .. and plan to stay that way.
Monday, April 19, 2010
Ha Ha
The only hope we have of surviving things we wish we didn't have to deal with at all, is to be able to find humour in them.
I require another 24 hour urine collection. I had the first collection prior to surgery while I was also in the middle of a prolonged period of diarrhea. That I hope I never have to repeat, ... and did require, keeping one's sense of humour. To execute this test, means that every drop must be caught from the second time one has to go in the morning, through the night, until the first one the following morning, and not one time can be missed.
To-day being Monday, and knowing that I cannot eat bananas, pineapple, plums or eggplant for 3 or 4 days prior to this collection, I was prepared when I picked up my bright orange, 3 litre container to get right at things in the morning, ... I had even cancelled a lunch with friends to give this my full and undivided attention. I had had none of the above, ... but, .... I had forgotten walnuts. Last night, mixed in with a small palmful of mixed nuts, there were no more than 4 walnut halves, which I ate. I now have a call in to the Oncology Clinic to see if 4 walnut halves will make a difference. This is important because, the requisition for this test says "Please do Now!".
If eating the walnuts is a real NO NO, I cannot collect until this coming Thursday at the earliest, take it in to the lab on Friday and the results are needed before my first injection on Friday.
With all the indignities that may be ahead of me, ... I'm laughing, ... Ha Ha!!
I require another 24 hour urine collection. I had the first collection prior to surgery while I was also in the middle of a prolonged period of diarrhea. That I hope I never have to repeat, ... and did require, keeping one's sense of humour. To execute this test, means that every drop must be caught from the second time one has to go in the morning, through the night, until the first one the following morning, and not one time can be missed.
To-day being Monday, and knowing that I cannot eat bananas, pineapple, plums or eggplant for 3 or 4 days prior to this collection, I was prepared when I picked up my bright orange, 3 litre container to get right at things in the morning, ... I had even cancelled a lunch with friends to give this my full and undivided attention. I had had none of the above, ... but, .... I had forgotten walnuts. Last night, mixed in with a small palmful of mixed nuts, there were no more than 4 walnut halves, which I ate. I now have a call in to the Oncology Clinic to see if 4 walnut halves will make a difference. This is important because, the requisition for this test says "Please do Now!".
If eating the walnuts is a real NO NO, I cannot collect until this coming Thursday at the earliest, take it in to the lab on Friday and the results are needed before my first injection on Friday.
With all the indignities that may be ahead of me, ... I'm laughing, ... Ha Ha!!
Saturday, April 17, 2010
Catch Up
It will be hard to catch up here, so much time has passed since my surgery which was apparently a success. My stay in the hospital was good and lasted 7 days for which I am grateful. There was no trouble with the incision or the surgery and my recovery has been just as it should be, and as I am determined to live quite awhile yet, I have rested when I needed to, and moved when I felt like it. Six weeks is the average recovery time, and that will be here in just 4 more days.
Elvin has been wonderful, ... patient, calm, and accommodating. I have had a minimum of stress and that has been a great help in recovering. For 2 weeks after coming home, we had Meals on Wheels, which turned out to be way too much food, as neither of us are eating as we once did. I have lost 20 pounds and intend that it stay lost.
This is a continuing journey still as the 2 spots of cancer in the liver, even though they were "zapped", will always be, "cancer in the liver". This will be monitored yearly and I continue to be very careful what I eat, concentrating on foods that do not stress the liver.
I have my 6 week check-up with the surgeon this coming Thursday, and I begin a monthly needle in the stomach this coming Friday as a means of retarding the growth of any stray cancer cells. This I will supposedly have to have for the rest of my live, ... if the side effects don't finish me first. I may be one of the lucky ones and have only the mildest and most common, which include abdominal discomfort, loose stools, nausea, abdominal gas, .... Wahoo, how lucky could I get. This however is only supposed to last 24 hours, ... once a month, ... for the rest of my life. Sounds as though I will be rigidly planning my activities. Don't get me wrong, ... I am very grateful that the surgeon feels he got everything and my future looks very good, and science has discovered something to retard the growth of cancer cells.
My journey with cancer, will be walking hand in hand with my journey with hip replacement which begins the 30th of this month, with a trip to Toronto for an assessment with Dr. Cameron at the Holland Arthritis Institute in Toronto. Everyone tells me this will be a great success and I will feel like a new person, ... can't wait, ... this new person will be able to walk upstairs, shop, garden, dance, ... all without pain. I hang on to this belief with tight fingers.
It will be an interesting Summer, ... tiring, uncomfortable and I will need to be able to keep as positive as I have been up to this time, ... bear with me.
Elvin has been wonderful, ... patient, calm, and accommodating. I have had a minimum of stress and that has been a great help in recovering. For 2 weeks after coming home, we had Meals on Wheels, which turned out to be way too much food, as neither of us are eating as we once did. I have lost 20 pounds and intend that it stay lost.
This is a continuing journey still as the 2 spots of cancer in the liver, even though they were "zapped", will always be, "cancer in the liver". This will be monitored yearly and I continue to be very careful what I eat, concentrating on foods that do not stress the liver.
I have my 6 week check-up with the surgeon this coming Thursday, and I begin a monthly needle in the stomach this coming Friday as a means of retarding the growth of any stray cancer cells. This I will supposedly have to have for the rest of my live, ... if the side effects don't finish me first. I may be one of the lucky ones and have only the mildest and most common, which include abdominal discomfort, loose stools, nausea, abdominal gas, .... Wahoo, how lucky could I get. This however is only supposed to last 24 hours, ... once a month, ... for the rest of my life. Sounds as though I will be rigidly planning my activities. Don't get me wrong, ... I am very grateful that the surgeon feels he got everything and my future looks very good, and science has discovered something to retard the growth of cancer cells.
My journey with cancer, will be walking hand in hand with my journey with hip replacement which begins the 30th of this month, with a trip to Toronto for an assessment with Dr. Cameron at the Holland Arthritis Institute in Toronto. Everyone tells me this will be a great success and I will feel like a new person, ... can't wait, ... this new person will be able to walk upstairs, shop, garden, dance, ... all without pain. I hang on to this belief with tight fingers.
It will be an interesting Summer, ... tiring, uncomfortable and I will need to be able to keep as positive as I have been up to this time, ... bear with me.
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