This is a bit of an unusual missive but I felt it needed to be written.
Over the past two years and four months I have been blessed to share this journey with many many people. People I have never met and yet are interested in what I am thinking and feeling. People who I know but also know that I am not the most forthcoming with how I feel in person. I like to keep things positive and upbeat because whatever I am doing I want to enjoy it. ....also early on I found the 'puppy dog' eyes I would get from some people absolutely drove me crazy. It is not that I don't want to share my true feelings it is just when I am out and about I want to have fun and not be focusing on my illness. I learnt that from my daughter ......there are times w hen you just have to feel that the illness is not a part of the package.....a respite from reality while living in reality!!!!
Anyways as usual I digress.......what I wanted to say here is that I appreciate everyone who reads my blog and I love to read the comments too. I don't usually respond to comments mainly due to the fact that once I have written the blog I am usually past the feelings that I have expressed. It is very cathartic for me.....I am in the moment and then I can move to the next moment. Also, I am often so humbled by the words of wisdom, support, care and compassion that so many have offered, I am at a loss for words (yes really!!!!) most times.
So thank you....thank you for your humanity in allowing me to share a journey that is not always easy, I don't believe to be a blessing, but has certainly brought many blessings into my life.....and this has been one of them......what did we do before the Internet. I have been privileged to have so many people from so many lands share in my story.....that to me is the miracle that I am living.....
So please feel free to follow me publicly or privately, comment or not, but send me positive energy into the universe and I too will send it back multiple times again......
Sunday, March 10, 2013
Thursday, March 7, 2013
Courage vs. Fear
A few days ago I went shopping for a gift for friends who celebrated 50 years of marriage. I wanted to get them something that would resonate with them and so I went to the Catholic Book Store which is not one of my usual shopping venues. I did find something appropriate , but I also found something for myself as well. At the time I don't think I realized the significance of it, I just knew that it jumped out at me and I had to pick it up. It is a beautiful coffee mug, a Wedgwood blue (my favorite colour), and perfect size and shape for a GOOD cup of coffee....all the things I believe necessary when buying a coffee mug! :)
It had one other characteristic....a beautiful quote about courage. Courage has been one of the words that many people have used to describe me and I have never really felt completely comfortable with that description. I have always believed that courage implied a choice....you could do something or you couldn't do it....it wasn't something you had when you had no choice. Cancer was never a choice in my life. I didn't have the choice of being healthy and chose to be sick...I didn't have the choice of death and chose life...it is something that happened to me. So for me there was nothing courageous about it. The quote on the mug says: "Courage is not the absence of fear, but the presence of faith"
OK. That definition makes sense to me. So I bought the mug......end of story right?
No, not at all. It has been churning in my mind ever since I bought it. Why? Why did I feel the need to buy it....I am not normally an impulse buyer, unless it concerns yarn, so why did I feel without even a hesitation to pick it up and buy it. I have used it everyday since.....and read the quote each time, thinking Yes that is what I believe. Then I realized it...........I have been afraid lately for the first time in years. Fear is not something I like to acknowledge, and it is really not something I like to talk about. But lately my life has been ruled by fear......the events of last August have left me in a state of fear.......
From the very beginning of this journey, I have never really felt that there wasn't anything I couldn't handle. I would do what was necessary but I also wasn't going to change much about how I lived my life. I remember early on, when I would plan a trip many people would say "what if you get sick when you are away, what will happen" and I would shake my head and say, "what if I don't get sick". I really believed that I wasn't suppose to live my life in the world of 'what if's'. That is exactly what I have been doing since August. I think the events of last August which were so out of my control have made me feel very vulnerable. A state I don't think I ever really considered myself to be.
First going home to visit my mom for two weeks....even though she was in the hospital it never occurred to me that she would die. It never occurred to me that this would be my last visit with her. That did throw me for a loop I admit.....but then to end up in hospital and have to have surgery I think was just too much for my psyche. The worst case scenario had happened..my mother died and I got sick while away, and it was very very scary. I remember being absolutely terrified just before the surgery, something I had never before felt. When the nurse was rolling me into the OR I asked her if people were usually afraid and I will never forget what she said "usually when it's their first time, but not as scared when they have been through it before"....I looked at her and said, "well this isn't my first rodeo and I am absolutely terrified"....she took my hand and said "I will hold your hand until you go to sleep"....
When I woke up I remember being so relieved! But I will never forget how frightened I was. I had never felt that way before. In many ways I think it was because my daughter wasn't there this time. It was like I might not get a chance to say good - bye, give her all the advice I need to, make sure she understood I loved her ...... Yet I survived and am still here but the fear has yet to subside.
I think this has come home to roost lately because I am going to go away for the first time since last August. I am having the what ifs, and I am not used to them. I will be fine, and I will still go away....I am not one to miss a trip. Maybe, the mug was God's way of reminding me that although I don't think of myself as courageous, that maybe this new way of looking at courage will give me some.
So, I might be afraid but I must remind myself I also have much faith.....and it will see me through!
It had one other characteristic....a beautiful quote about courage. Courage has been one of the words that many people have used to describe me and I have never really felt completely comfortable with that description. I have always believed that courage implied a choice....you could do something or you couldn't do it....it wasn't something you had when you had no choice. Cancer was never a choice in my life. I didn't have the choice of being healthy and chose to be sick...I didn't have the choice of death and chose life...it is something that happened to me. So for me there was nothing courageous about it. The quote on the mug says: "Courage is not the absence of fear, but the presence of faith"
OK. That definition makes sense to me. So I bought the mug......end of story right?
No, not at all. It has been churning in my mind ever since I bought it. Why? Why did I feel the need to buy it....I am not normally an impulse buyer, unless it concerns yarn, so why did I feel without even a hesitation to pick it up and buy it. I have used it everyday since.....and read the quote each time, thinking Yes that is what I believe. Then I realized it...........I have been afraid lately for the first time in years. Fear is not something I like to acknowledge, and it is really not something I like to talk about. But lately my life has been ruled by fear......the events of last August have left me in a state of fear.......
From the very beginning of this journey, I have never really felt that there wasn't anything I couldn't handle. I would do what was necessary but I also wasn't going to change much about how I lived my life. I remember early on, when I would plan a trip many people would say "what if you get sick when you are away, what will happen" and I would shake my head and say, "what if I don't get sick". I really believed that I wasn't suppose to live my life in the world of 'what if's'. That is exactly what I have been doing since August. I think the events of last August which were so out of my control have made me feel very vulnerable. A state I don't think I ever really considered myself to be.
First going home to visit my mom for two weeks....even though she was in the hospital it never occurred to me that she would die. It never occurred to me that this would be my last visit with her. That did throw me for a loop I admit.....but then to end up in hospital and have to have surgery I think was just too much for my psyche. The worst case scenario had happened..my mother died and I got sick while away, and it was very very scary. I remember being absolutely terrified just before the surgery, something I had never before felt. When the nurse was rolling me into the OR I asked her if people were usually afraid and I will never forget what she said "usually when it's their first time, but not as scared when they have been through it before"....I looked at her and said, "well this isn't my first rodeo and I am absolutely terrified"....she took my hand and said "I will hold your hand until you go to sleep"....
When I woke up I remember being so relieved! But I will never forget how frightened I was. I had never felt that way before. In many ways I think it was because my daughter wasn't there this time. It was like I might not get a chance to say good - bye, give her all the advice I need to, make sure she understood I loved her ...... Yet I survived and am still here but the fear has yet to subside.
I think this has come home to roost lately because I am going to go away for the first time since last August. I am having the what ifs, and I am not used to them. I will be fine, and I will still go away....I am not one to miss a trip. Maybe, the mug was God's way of reminding me that although I don't think of myself as courageous, that maybe this new way of looking at courage will give me some.
So, I might be afraid but I must remind myself I also have much faith.....and it will see me through!
Monday, March 4, 2013
Fatigue!!!!! YUK
It has been sometime since I felt the urge to write. I go through these moments where I think maybe I don't need to blog anymore and try and continue my journey without venting, writing, or just letting things out. It isn't a good thing, but like anything we all come to a point where we believe we are doing better than we think. Isn't this why some people go off their medication because they think that they are cured and don't need it? Well in many ways that is how it works with me and blogging.
Then something happens and I am reminded that I am not completely healthy and the world is not exactly as I would like it to be. This weekend was one of those times. I had an extremely busy weekend, with lots of positive events. The only thing is that for the entire weekend, I struggled to keep my energy up in order that I could participate in them. Not everything I wanted to do got done but it was still a busy busy time. I made it too most events, but the whole time I knew that I was going to be exhausted after...worrying if I would be able to do the next. Trying to figure out how much I could do and still enjoy myself and still have energy to do the next thing. I am not very good at saying no, and of course love a good party!!! The fallout came in the end though. I hit a wall last night and was reminded of when I was on chemo and I would go until I literally fell down. You would think that after almost twelve years I had figured this part of my character out ...but no....and also.....
You would think since it has been over six years since my last round of chemo that I would feel normal again. The fact that I have a tumour growing may be one reason why I can't get energy when I need it. Well when I hit the wall it all came flying back, the fatigue, the sore muscles, the headaches everything. I went to bed early last night, slept fitfully all night, and then spent the day in bed trying to get some sleep. I was right back at the beginning of when cancer hit! Twenty-four hours of doing absolutely nothing and I am just beginning to feel human again. I hate this. I know this isn't getting old.....I would have to be 80 to feel this way. My mother only started to feel like this in her mid-eighties and even then she was able to read when she went to bed. I couldn't even do that last night. I hate the fatigue, it is such a reminder of my cancer. Fatigue really is the biggest symptom of cancer. The cancer just sucks the energy right out of you and leaves you feeling empty and limp.
So I have been reminded of two things. One I am really not healthy in a normal way, and secondly I still need to have a venue to vent my frustrations....alas I will be continuing to blog!!!!!! as for the first one.....still on a learning curve there :)
Then something happens and I am reminded that I am not completely healthy and the world is not exactly as I would like it to be. This weekend was one of those times. I had an extremely busy weekend, with lots of positive events. The only thing is that for the entire weekend, I struggled to keep my energy up in order that I could participate in them. Not everything I wanted to do got done but it was still a busy busy time. I made it too most events, but the whole time I knew that I was going to be exhausted after...worrying if I would be able to do the next. Trying to figure out how much I could do and still enjoy myself and still have energy to do the next thing. I am not very good at saying no, and of course love a good party!!! The fallout came in the end though. I hit a wall last night and was reminded of when I was on chemo and I would go until I literally fell down. You would think that after almost twelve years I had figured this part of my character out ...but no....and also.....
You would think since it has been over six years since my last round of chemo that I would feel normal again. The fact that I have a tumour growing may be one reason why I can't get energy when I need it. Well when I hit the wall it all came flying back, the fatigue, the sore muscles, the headaches everything. I went to bed early last night, slept fitfully all night, and then spent the day in bed trying to get some sleep. I was right back at the beginning of when cancer hit! Twenty-four hours of doing absolutely nothing and I am just beginning to feel human again. I hate this. I know this isn't getting old.....I would have to be 80 to feel this way. My mother only started to feel like this in her mid-eighties and even then she was able to read when she went to bed. I couldn't even do that last night. I hate the fatigue, it is such a reminder of my cancer. Fatigue really is the biggest symptom of cancer. The cancer just sucks the energy right out of you and leaves you feeling empty and limp.
So I have been reminded of two things. One I am really not healthy in a normal way, and secondly I still need to have a venue to vent my frustrations....alas I will be continuing to blog!!!!!! as for the first one.....still on a learning curve there :)
Friday, February 15, 2013
No news.......good news!
SO.....no news is good news. Well there is really nothing new to report. Tests proved to be good...the nasty beast is growing but still is not infringing on anything so the doctor wants us to 'stay the course'. It is my decision ultimately because the turmour is operable but I for one am not interested in doing surgery again so close to the last one....August 2012. If I don't have to it will be better in the long run to let the last incision heal and mend before cutting into it again!!!! ...as always a bit of an oxymoron :)
As for the nausea, well we still aren't sure what's up with that. As the doctor says the only thing we do know is that there is very little to no chance that the cancer is causing it. He even says that there is no evidence of any blockage, adhesion etc that could be the cause. In addition he checked the head CT scan....brain is there but nothing else!!!! :) Essentially, it is a mystery still to be solved....but by my GP not my specialist. OMG I never envisioned a life so involved with our medical community.....thank goodness I live in Canada and have no worries about cost....and as far as I have experienced I have had nothing but good care, timely and with compassion....I would probably be a great 'poster girl' for universal health care.
It is amazing how one's psychological health improves when you realize that the symptoms that you are experiencing are not serious or life threatening. It is difficult at times to deal with anything new because one immediately thinks it might be something sinister....but alas.....this time I am just normally being annoyed by something that at this point is not diagnosed but also not cancer related.....yea I can deal with that.
I want to thank everyone for all your support and prayers at this time. I am not one to easily express what is actually going on in my life and the positive responses always surprise me. This blog has allowed me the opportunity to be honest about what is going on without having to look into the faces of those I care about and see their concern for me. I am not good at that , although that may surprise many who know me, plus in many ways that count I am a private person. The one thing that I have learnt over the past couple of years is that when we are honest about our trials and troubles, there is a world of love and support out there........I have been blessed with this knowledge many times over.
So.....on Valentine's Day I have found that I am loved.....by those known and unknown and that has been my blessing on this day.......Happy Love Day to everyone and blessing too!!!!!
As for the nausea, well we still aren't sure what's up with that. As the doctor says the only thing we do know is that there is very little to no chance that the cancer is causing it. He even says that there is no evidence of any blockage, adhesion etc that could be the cause. In addition he checked the head CT scan....brain is there but nothing else!!!! :) Essentially, it is a mystery still to be solved....but by my GP not my specialist. OMG I never envisioned a life so involved with our medical community.....thank goodness I live in Canada and have no worries about cost....and as far as I have experienced I have had nothing but good care, timely and with compassion....I would probably be a great 'poster girl' for universal health care.
It is amazing how one's psychological health improves when you realize that the symptoms that you are experiencing are not serious or life threatening. It is difficult at times to deal with anything new because one immediately thinks it might be something sinister....but alas.....this time I am just normally being annoyed by something that at this point is not diagnosed but also not cancer related.....yea I can deal with that.
I want to thank everyone for all your support and prayers at this time. I am not one to easily express what is actually going on in my life and the positive responses always surprise me. This blog has allowed me the opportunity to be honest about what is going on without having to look into the faces of those I care about and see their concern for me. I am not good at that , although that may surprise many who know me, plus in many ways that count I am a private person. The one thing that I have learnt over the past couple of years is that when we are honest about our trials and troubles, there is a world of love and support out there........I have been blessed with this knowledge many times over.
So.....on Valentine's Day I have found that I am loved.....by those known and unknown and that has been my blessing on this day.......Happy Love Day to everyone and blessing too!!!!!
Wednesday, February 13, 2013
See what tomorrow brings????
Just a quick post. Tomorrow I go to the doctor and usually I hate these appointments. I am actually looking forward to it because I have been feeling so lousy. I don't think there will be any earth shattering decisions made but I think it is time to have a talk about what the future (near future) holds.
My fatigue has really started to take its toll and the damn nausea is not going away. Also, really bad pain in the side of my head but I think that is from clenching my jaw so tight at night that I am having muscle spasms. It is an indication that I am more stressed that even I admit to......
So here we go again........maybe!!!!
My fatigue has really started to take its toll and the damn nausea is not going away. Also, really bad pain in the side of my head but I think that is from clenching my jaw so tight at night that I am having muscle spasms. It is an indication that I am more stressed that even I admit to......
So here we go again........maybe!!!!
Sunday, February 10, 2013
Snow and Memories!
Quiet snowy winter days. Well winter has arrived finally and I don't mind. I guess when you live in Canada there is an expectation that it will be cold, snowy and brisk (love that word) for a period of time. When it doesn't come, it is a little disconcerting!!! The snow storm on Friday was just like the "old days" with lots of snow, blowing and no plows out!!!!!! Later in the evening I had the chance to walk out and it was wonderful. The crisp air, the clear sky and the snow up to my shins reminded me of when I was young. We would dress up in our snow pants, scarves (we were allowed to wear them then) and double up on our mitts, grab our toboggans (wooden and waxed) and meet up with friends to go tobogganing on the golf course hill. I am sure there would be numerous liability issues today....
Off we would go, and slide and climb for hours. It would be 10 p.m. before I would fall in the door, rosy cheeked and exhausted. Mom would take my soaking mitts off and take my hands in hers and blow her breath on them to warm them. The fingers would be white on the tips and they would burn at first but it always felt good. Then she would make a pot of tea and sit in the kitchen and listen to all the stories and mishaps that had happened. Memories are so good to have.......especially when I have been missing my Mom and Dad so much lately. So snowstorms bring back a time and a place that I will carry in my heart forever!!!! We had so much fun in those days.....outside, fresh air, and no adults around!!!!!
Like life, a beautiful time once the storm has passed....glorious sunrise and frosted trees...the earth is fresh and new to greet another day.
As for health....well things are what they are. Sleeping is still allusive but I seem to make up for it by not doing much the next day. Last night was brutal so didn't do much today...not even Church....imagine that. Wanted to go for a long walk, but even the dog wasn't interested in going out.....she walked to the end of the walkway and turned around....so no walk for me.
Have been cooking up some new recipes from my Mom's old ones and so that has made the house smell good and my belly feel full. Meds seem to be working relatively well, as long as I remember in the morning to take my pill....it always takes me a little while to get used to taking new pills.
I did find an new show to watch and think that I am going to become addicted to it. It's a British show called Downton Abbey. Got the first season and watched it all day today....loved it. I don't have t.v so I will have to get the other seasons as they come out. It's been a long time since I found something so interesting to watch and with such good actors ......suggest it to everyone. I think I will have to get the movie that it was made from called Gosford Park.
Well that is all she wrote today........
Off we would go, and slide and climb for hours. It would be 10 p.m. before I would fall in the door, rosy cheeked and exhausted. Mom would take my soaking mitts off and take my hands in hers and blow her breath on them to warm them. The fingers would be white on the tips and they would burn at first but it always felt good. Then she would make a pot of tea and sit in the kitchen and listen to all the stories and mishaps that had happened. Memories are so good to have.......especially when I have been missing my Mom and Dad so much lately. So snowstorms bring back a time and a place that I will carry in my heart forever!!!! We had so much fun in those days.....outside, fresh air, and no adults around!!!!!
As for health....well things are what they are. Sleeping is still allusive but I seem to make up for it by not doing much the next day. Last night was brutal so didn't do much today...not even Church....imagine that. Wanted to go for a long walk, but even the dog wasn't interested in going out.....she walked to the end of the walkway and turned around....so no walk for me.
Have been cooking up some new recipes from my Mom's old ones and so that has made the house smell good and my belly feel full. Meds seem to be working relatively well, as long as I remember in the morning to take my pill....it always takes me a little while to get used to taking new pills.
I did find an new show to watch and think that I am going to become addicted to it. It's a British show called Downton Abbey. Got the first season and watched it all day today....loved it. I don't have t.v so I will have to get the other seasons as they come out. It's been a long time since I found something so interesting to watch and with such good actors ......suggest it to everyone. I think I will have to get the movie that it was made from called Gosford Park.
Well that is all she wrote today........
Wednesday, February 6, 2013
Difficult Days.......
Well this is not going to be a good post. I usually try hard to find some positive little spin on things, and I am often successful. Today, I don't seem to have that ability. Maybe not sleeping very well last night has something to do with it.
Lately, I haven't been feeling my best and have been to the doctor to see what we can do. I have had this nausea for weeks and it is driving me crazy. It wakes me up in the night and lasts all day. Sort of like morning sickness with out the pregnancy!!!!! So last week went to the GP and she prescribed something. Saturday, I realized that I wasn't having my nausea and was thrilled. Well it's BACK!
Woke up during the night with it and again this morning. Drugs aren't working. I feel like crap. I know that the tumour is growing and that eventually I will have to deal with it...but I never felt sick before. I had a CT scan two weeks ago for my belly and will find out the results next week....although my GP did look it up and said that the tumour is 6.1 cm x 4 cm now (compared to 3 cm a year ago)...but there is nothing else new. So it really is positive news. She did send me for a CT scan on my head though because with the nausea I have been experiencing headaches and that isn't a good thing. The nausea centre is in the brain so she wants to make sure nothing is going on there. Metastasis to the brain is extremely rare in my cancer (mind you rare seems to be my middle name) and I don't think there is anything wrong in that way. I think the headaches are due to the fact that I don't sleep well when feeling sick and so am tired and headachey. She agreed but said 'better safe than sorry'.
I just want to feel better. I have absolutely no energy and am almost afraid to take a nap in the afternoon because I wake up and it's night. Lay down one day at 3 p.m. and woke up at 8 p.m. A little confused as to whether it was morning or night!!!! Canada is pretty dark in the early morning :)
So am just trying to get through the day sometimes......Yoga has been helping I must admit. It is hard to get the energy up to go sometimes. It's in the evening and its dark, and cold, and sometimes snowy and I have the urge to hunker down and just stay warm and cozy. BUT, when I go I am so glad because I actually feel better afterwards. I walk to and from so I get fresh (read very cold) air and it wakes me up and stretches all my muscles. The nice part is I usually sleep really well that night too. Maybe my frustration is that last night I didn't!!!! Even yoga didn't work.
Oh well, life sucks sometimes and then we just have to move on. I am sure there are people in this world that are having a much more difficult day than me. Maybe I will pray for them and take the focus off myself.......
Lately, I haven't been feeling my best and have been to the doctor to see what we can do. I have had this nausea for weeks and it is driving me crazy. It wakes me up in the night and lasts all day. Sort of like morning sickness with out the pregnancy!!!!! So last week went to the GP and she prescribed something. Saturday, I realized that I wasn't having my nausea and was thrilled. Well it's BACK!
Woke up during the night with it and again this morning. Drugs aren't working. I feel like crap. I know that the tumour is growing and that eventually I will have to deal with it...but I never felt sick before. I had a CT scan two weeks ago for my belly and will find out the results next week....although my GP did look it up and said that the tumour is 6.1 cm x 4 cm now (compared to 3 cm a year ago)...but there is nothing else new. So it really is positive news. She did send me for a CT scan on my head though because with the nausea I have been experiencing headaches and that isn't a good thing. The nausea centre is in the brain so she wants to make sure nothing is going on there. Metastasis to the brain is extremely rare in my cancer (mind you rare seems to be my middle name) and I don't think there is anything wrong in that way. I think the headaches are due to the fact that I don't sleep well when feeling sick and so am tired and headachey. She agreed but said 'better safe than sorry'.
I just want to feel better. I have absolutely no energy and am almost afraid to take a nap in the afternoon because I wake up and it's night. Lay down one day at 3 p.m. and woke up at 8 p.m. A little confused as to whether it was morning or night!!!! Canada is pretty dark in the early morning :)
So am just trying to get through the day sometimes......Yoga has been helping I must admit. It is hard to get the energy up to go sometimes. It's in the evening and its dark, and cold, and sometimes snowy and I have the urge to hunker down and just stay warm and cozy. BUT, when I go I am so glad because I actually feel better afterwards. I walk to and from so I get fresh (read very cold) air and it wakes me up and stretches all my muscles. The nice part is I usually sleep really well that night too. Maybe my frustration is that last night I didn't!!!! Even yoga didn't work.
Oh well, life sucks sometimes and then we just have to move on. I am sure there are people in this world that are having a much more difficult day than me. Maybe I will pray for them and take the focus off myself.......
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