Posts
“Two things are infinite: the universe and human stupidity; and I'm not sure about the universe.”
―Saturday, May 7, 2022
Friday, September 14, 2012
Sunday, March 6, 2011
Down
Went to an old Facebook site of mine. Funny, sad feeling... it is history, those people there belong like to another world. And this site: I feel sad having had to remove a few people because of bad behavior but I feel it was the right thing to do... feel sad only because I had to go through that. -I'm sad also because I have severe difficulties in learning and I wonder if it is due to mental stress or if I have really become so dull... will my brain be the same as it was one day or will I remain like this?
I have had a few severe conflicts with people which I think are due to my reduced capacity to communicate. I get tired easily but I don't notice it... I want to say things but I don't find words... I overreact... I get frustrated with my inability to deal with situations and it makes me angry... and so on... I feel lost. Communication seems like an endless source of diverse clues and hints which all I should notice and follow, and I feel I can't separate them from each other and mostly I don't notice anything at all, don't find the right words, don't even know what to say... and I feel I am utterly careful in trying not to cause conflicts or problems or behave in an unfriendly way - which I don't mean to but whcih can be misunderstood...
I think I have been really down after Ritva's pass-away. I tried to take it like, death belongs to life, it happens... but I can't. It came closer than I could think of. I am not worried of myself but it just feels so odd that over and over again I am left here, I am still alive and people around me pass away, one after another... and I am here although I feel so useless... like, what use am I now for anyone when I feel I am just a burden - and try all I can not to be a burden. I see the presence of death in people's reactions although they are positive and feel good to me - I realize people are saying and doing things they want to say and do when I am still alive and it is okey... it brings the death there so that it is present all the time. As it is too, in reality, of course - because death is part of life.
I have had a few severe conflicts with people which I think are due to my reduced capacity to communicate. I get tired easily but I don't notice it... I want to say things but I don't find words... I overreact... I get frustrated with my inability to deal with situations and it makes me angry... and so on... I feel lost. Communication seems like an endless source of diverse clues and hints which all I should notice and follow, and I feel I can't separate them from each other and mostly I don't notice anything at all, don't find the right words, don't even know what to say... and I feel I am utterly careful in trying not to cause conflicts or problems or behave in an unfriendly way - which I don't mean to but whcih can be misunderstood...
I think I have been really down after Ritva's pass-away. I tried to take it like, death belongs to life, it happens... but I can't. It came closer than I could think of. I am not worried of myself but it just feels so odd that over and over again I am left here, I am still alive and people around me pass away, one after another... and I am here although I feel so useless... like, what use am I now for anyone when I feel I am just a burden - and try all I can not to be a burden. I see the presence of death in people's reactions although they are positive and feel good to me - I realize people are saying and doing things they want to say and do when I am still alive and it is okey... it brings the death there so that it is present all the time. As it is too, in reality, of course - because death is part of life.
Early diagnosing is essential in breast cancer - help women get diagnosed!
Wednesday Feb 23rd, 2011
Thanks everyone, you are such wonderful people - I am astonished and surprised by the lots of encouragement and positive feedback.... thank you....
When I was diagnosed with breast cancer, I wanted to know everything - I read books, I collected info, I wanted to know... how others had made it.... I read wonderful books and also remembered what a couple of my friends and school mates had told about their breast cancer and everything else I had heard.
One of my school mates had documented her breast cancer with photographs and I thought it was a good idea since within time, I might forget... so I started to do it too, and it is all over on this site, not just in those "breast" photos. It is hair loss, tiredness, whatever... my whole life such as it is now.
I also read a book about breast cancer survivors who climbed a mountain as a team in South America. When they arrived in the country, they got very popular because in that country the disease was a taboo and it was not talked about loud, but they did talk about it. In the press confrerences that were arranged for them , they could be asked for example if their husbands had left them already.
A friend of mine told me that in many countries in for example Africa breast cancer is a major killer among women because it is diagnosed too late. A very dear friend of mine lost his mother I think just that way - for too late diagnosing perhaps. I know how it hurts him and it hurts me as badly.
All these things come very near in this globalized world. I cannot do much right now but if there is one little thing I can do to spread knowlege and to change the attitude and to have an influence on earlier diagnosing on if not more than for one woman in this world so I will do it. Seeing things as they are can make things easier and less frightening for someone, be it a woman or her husband, her children. or whoever.
However, this is just one (very lucky) story. There are more than 200 different forms of breast cancer. Mine was one of the most evil ones, and see - here I am, and everything has gone really well, even if also the prognosis was a bit positive due to early discovery. A few square-cm of bare skin on show is a cheap price for that. People show a lot more in swim suits and bikini, LOL!
Thanks everyone, you are such wonderful people - I am astonished and surprised by the lots of encouragement and positive feedback.... thank you....
When I was diagnosed with breast cancer, I wanted to know everything - I read books, I collected info, I wanted to know... how others had made it.... I read wonderful books and also remembered what a couple of my friends and school mates had told about their breast cancer and everything else I had heard.
One of my school mates had documented her breast cancer with photographs and I thought it was a good idea since within time, I might forget... so I started to do it too, and it is all over on this site, not just in those "breast" photos. It is hair loss, tiredness, whatever... my whole life such as it is now.
I also read a book about breast cancer survivors who climbed a mountain as a team in South America. When they arrived in the country, they got very popular because in that country the disease was a taboo and it was not talked about loud, but they did talk about it. In the press confrerences that were arranged for them , they could be asked for example if their husbands had left them already.
A friend of mine told me that in many countries in for example Africa breast cancer is a major killer among women because it is diagnosed too late. A very dear friend of mine lost his mother I think just that way - for too late diagnosing perhaps. I know how it hurts him and it hurts me as badly.
All these things come very near in this globalized world. I cannot do much right now but if there is one little thing I can do to spread knowlege and to change the attitude and to have an influence on earlier diagnosing on if not more than for one woman in this world so I will do it. Seeing things as they are can make things easier and less frightening for someone, be it a woman or her husband, her children. or whoever.
However, this is just one (very lucky) story. There are more than 200 different forms of breast cancer. Mine was one of the most evil ones, and see - here I am, and everything has gone really well, even if also the prognosis was a bit positive due to early discovery. A few square-cm of bare skin on show is a cheap price for that. People show a lot more in swim suits and bikini, LOL!
Starting with the radio therapy
Thursday, Feb 17th, 2011
We have had very cold weather here lately, and with the exception of today and maybe tomorrow, it will also stay cold. Now we have "only" -16 degrees C, but there have been mornings when we have woken up to -29, and it has been +15 indoors - a bit chilly. But it is a great thing that the sun is already shining at daytime, so we have plenty of light - it all reflects from the white snow - instead of the continuous darkness and half-darkness which we have been having when the sun did not rise, or it stayed up for just a short while.
I was out-doors a while ago, I fixed the bird-feeder. Luckily, I could work with bare hands because it was so "warm" and there was no wind to make it chillier. It would have been difficult wearing gloves. I had to hang the feeder again, and I had to change some parts, but now it is okey and the birds can use it again - and they seem to have found it already. I am so used in them flying up and down in the tree which is in front of my window - the feeder is under the tree. They are wild birds - those that are seed-eaters and don't migrate to the south for winter but stay here. We help them survive by feeding them, quite many do so, and ornitologists say many of them would have to migrate without the feeding - or they would not survive.
I started the radio therapy today. Had to wake up at 5 a.m. because my appointment was at 9 in Vaasa Central Hospital, which is 100 km away, and I am never very quick in the mornings: asthma gets as worst precisely in the morning and slows down everything I do, and so does rheuma. But now it seemed I had plenty of time and I was in time in the hospital too, and I was back home at 11 already. Anyway, it takes 4 hours to get a 5 min. treatment.... a bit funny..... it is very technical and I don't really know much of anything about it. I was told today that the team of doctors, physicians, and whatever, had decided to give me the maximum treatment (the tumor was of the most dangerous and fast-spreading type) so I will go there every weekday (from Monday to Friday) till the end of March. And if nothing else comes out, that will be it then. After that, I suppose I will have some checks for some years, and they may want to take more mammographs than that usual every-two-years (I want to, anyway!) , and I will be on alert, more or less, the rest of my life, but it will not affect my life more than so. After all, who of us knows anything about the future? The prognosis is very good anyway. And I think I am so scanned inside and out that if there'd have been something, they'd have found it. And after all - I feel calm. It is not in my hands, not in the doctors' hands, but in God's hands, and I trust Him and His plan.
The mother of my friend was diagnosed at the same time as I was, and she also had her surgery at the same time, only in a different hospital. I heard last week that her cancar had spread, they had now found something and she had to go to further scans or whatever. My friend also told me before that she had not recovered very well from the surgery. Maybe the new tumor was the reasion which kept her from recovering. And also, she is of course a lot older than I am. The only thing that slows down my recovery is asthma, I wish it would settle down finally.And I sincerely hope all will be fine with my friend's mother too.
My best Finnish girl friend is changing jobs and moving really far from us, to Rovaniemi in the north - it is the capital of Lapland. I wish she will enjoy her new job and her new surroundings, but I will miss her! Luckily, there is all this modern technology to help us keep in touch, and I wish I or we (family) can visit her next summer. It is almost 700 km from here to Rovaniemi and it takes approximately 8 hours to drive - more than so because one must take pauses too. She will actually have someone to drive her things, and she will put her car and herself in a night train and sleep while the train will take her through Finland - very comfortable, and very sensible!
Now I think I must have a nap. That early wake-up seems to feel. And there is still the language lesson in the evening!
We have had very cold weather here lately, and with the exception of today and maybe tomorrow, it will also stay cold. Now we have "only" -16 degrees C, but there have been mornings when we have woken up to -29, and it has been +15 indoors - a bit chilly. But it is a great thing that the sun is already shining at daytime, so we have plenty of light - it all reflects from the white snow - instead of the continuous darkness and half-darkness which we have been having when the sun did not rise, or it stayed up for just a short while.
I was out-doors a while ago, I fixed the bird-feeder. Luckily, I could work with bare hands because it was so "warm" and there was no wind to make it chillier. It would have been difficult wearing gloves. I had to hang the feeder again, and I had to change some parts, but now it is okey and the birds can use it again - and they seem to have found it already. I am so used in them flying up and down in the tree which is in front of my window - the feeder is under the tree. They are wild birds - those that are seed-eaters and don't migrate to the south for winter but stay here. We help them survive by feeding them, quite many do so, and ornitologists say many of them would have to migrate without the feeding - or they would not survive.
I started the radio therapy today. Had to wake up at 5 a.m. because my appointment was at 9 in Vaasa Central Hospital, which is 100 km away, and I am never very quick in the mornings: asthma gets as worst precisely in the morning and slows down everything I do, and so does rheuma. But now it seemed I had plenty of time and I was in time in the hospital too, and I was back home at 11 already. Anyway, it takes 4 hours to get a 5 min. treatment.... a bit funny..... it is very technical and I don't really know much of anything about it. I was told today that the team of doctors, physicians, and whatever, had decided to give me the maximum treatment (the tumor was of the most dangerous and fast-spreading type) so I will go there every weekday (from Monday to Friday) till the end of March. And if nothing else comes out, that will be it then. After that, I suppose I will have some checks for some years, and they may want to take more mammographs than that usual every-two-years (I want to, anyway!) , and I will be on alert, more or less, the rest of my life, but it will not affect my life more than so. After all, who of us knows anything about the future? The prognosis is very good anyway. And I think I am so scanned inside and out that if there'd have been something, they'd have found it. And after all - I feel calm. It is not in my hands, not in the doctors' hands, but in God's hands, and I trust Him and His plan.
The mother of my friend was diagnosed at the same time as I was, and she also had her surgery at the same time, only in a different hospital. I heard last week that her cancar had spread, they had now found something and she had to go to further scans or whatever. My friend also told me before that she had not recovered very well from the surgery. Maybe the new tumor was the reasion which kept her from recovering. And also, she is of course a lot older than I am. The only thing that slows down my recovery is asthma, I wish it would settle down finally.And I sincerely hope all will be fine with my friend's mother too.
My best Finnish girl friend is changing jobs and moving really far from us, to Rovaniemi in the north - it is the capital of Lapland. I wish she will enjoy her new job and her new surroundings, but I will miss her! Luckily, there is all this modern technology to help us keep in touch, and I wish I or we (family) can visit her next summer. It is almost 700 km from here to Rovaniemi and it takes approximately 8 hours to drive - more than so because one must take pauses too. She will actually have someone to drive her things, and she will put her car and herself in a night train and sleep while the train will take her through Finland - very comfortable, and very sensible!
Now I think I must have a nap. That early wake-up seems to feel. And there is still the language lesson in the evening!
Counting my blessings
Monday Jan 31st, 2011
It is a spring-like day again and I am counting my blessings with a huge gratutude in mind. I am recovering from an agressive breast cancer and I have 10 days free before any scheduled appointment. It feels great - huuuuge - to be free from the 3-week-cyto-cycle which I have been bound to ever since I recovered from the surgery. Time for prayer, Bible-reading, walks with God... luxury.
In the morning, at breakfast, I was caught by a darling friend's chat messages because I had the chat open in my Android (cell phone), what a beautiful way to start a day! Thank you Mo Yee!
I feel privileged, looking at Mohammed's photos and videos from Ethiopia - the country with one of the oldest Christian traditions, a place that I have never been able to visit myself but which I can now see in his photos and videos. What a blessing!
I feel blessed by Rafik's postings about Tunisia - how much more it is than just an outside view, and I am also blessed for seeing him so active, for once. Never seen him study and analyze and post so much, and I feel happy for him that all this happened, is going on, and will lead to the best possible solution. It seems to me that he is in the right place right now, doing what he is supposed to do, doing his part in the revolution - and it makes me happy and feel blessed too. He is so good in writing and so good with the Internet, now he can use what he is good at, for the benefit of his country. I feel overly happy for him.
I feel overly blessed by Magdalena's baking. She made so delicious rolls yesterday that we ate them all direct from the oven - and how delicious they were! I am grateful for having food to eat, and overly grateful for it being so tasty and healthy! I am happy food is bringing joy in my life after all feeling-sick these past months! I am happy we will go out for lunch to celebrate my recovery from the last cyto treatment with my husband, that we have a lunch date this week!
I am happy to know that I have married the most wonderful man in this world, and I feel privileged that I can devote my life in making him happy. I could not imagine anything better!
I am happy of my smart children who fill my days with joy more than with anything else. I am happy I have learned that illness can be a blessing. I am happy I have learned how much support means, and how easy it is to support other people. It does not take much - just the will to be there and to support - the rest will make its way.
I am happy of my little Moroccan brother - God took away one little brother and gave another - it feels just incredible to learn to know his family too. I never imagined anything like that!
I am grateful of this grateful mind, because it is not my creation but God's. I could be sour as well, dissatisfied, angry, bitter - I feel so blessed that for now, thanks to God, I don't have these feelings! It feels good to be happy, and it feels good to be happy for others!
I am so happy too that I have all this time for myself, for resting, for motioning, for taking it easy. I think it has saved my life.
Mo Yee's rash, Cynthia's asthma - I have already got answers to prayers this morning and it is only 10 a.m. What an overflow of blessings we have, only we get eyes to see them!
My wish is to bless others today. I don't know how but I am sure I will be shown the way.
God bless you all! I love you!
It is a spring-like day again and I am counting my blessings with a huge gratutude in mind. I am recovering from an agressive breast cancer and I have 10 days free before any scheduled appointment. It feels great - huuuuge - to be free from the 3-week-cyto-cycle which I have been bound to ever since I recovered from the surgery. Time for prayer, Bible-reading, walks with God... luxury.
In the morning, at breakfast, I was caught by a darling friend's chat messages because I had the chat open in my Android (cell phone), what a beautiful way to start a day! Thank you Mo Yee!
I feel privileged, looking at Mohammed's photos and videos from Ethiopia - the country with one of the oldest Christian traditions, a place that I have never been able to visit myself but which I can now see in his photos and videos. What a blessing!
I feel blessed by Rafik's postings about Tunisia - how much more it is than just an outside view, and I am also blessed for seeing him so active, for once. Never seen him study and analyze and post so much, and I feel happy for him that all this happened, is going on, and will lead to the best possible solution. It seems to me that he is in the right place right now, doing what he is supposed to do, doing his part in the revolution - and it makes me happy and feel blessed too. He is so good in writing and so good with the Internet, now he can use what he is good at, for the benefit of his country. I feel overly happy for him.
I feel overly blessed by Magdalena's baking. She made so delicious rolls yesterday that we ate them all direct from the oven - and how delicious they were! I am grateful for having food to eat, and overly grateful for it being so tasty and healthy! I am happy food is bringing joy in my life after all feeling-sick these past months! I am happy we will go out for lunch to celebrate my recovery from the last cyto treatment with my husband, that we have a lunch date this week!
I am happy to know that I have married the most wonderful man in this world, and I feel privileged that I can devote my life in making him happy. I could not imagine anything better!
I am happy of my smart children who fill my days with joy more than with anything else. I am happy I have learned that illness can be a blessing. I am happy I have learned how much support means, and how easy it is to support other people. It does not take much - just the will to be there and to support - the rest will make its way.
I am happy of my little Moroccan brother - God took away one little brother and gave another - it feels just incredible to learn to know his family too. I never imagined anything like that!
I am grateful of this grateful mind, because it is not my creation but God's. I could be sour as well, dissatisfied, angry, bitter - I feel so blessed that for now, thanks to God, I don't have these feelings! It feels good to be happy, and it feels good to be happy for others!
I am so happy too that I have all this time for myself, for resting, for motioning, for taking it easy. I think it has saved my life.
Mo Yee's rash, Cynthia's asthma - I have already got answers to prayers this morning and it is only 10 a.m. What an overflow of blessings we have, only we get eyes to see them!
My wish is to bless others today. I don't know how but I am sure I will be shown the way.
God bless you all! I love you!
Spring in the air!
Sunday Jan 30th, 2011
Have you noticed? It is some spring in the air today (or have I just woken up from cyto-coma, LOL). The light looks spring-like, bird-song has something of spring in it, and also other noices sound a bit more like spring. Like, car tyres crashing the ice on the street while they go... Funny, it is actually not even February yet... a bit early for spring feelings, but I have been dusting and having the window open and enjoying because I am not freezing... and throwing away quite an amount of paper. There is lots of that sort of thing to do and there is still a limit of what I can do... but at least I will not be getting worse anymore (because there will not be any more cytostates for me for the time being, and I indeed hope never... )
I bought a Bookeen e-book reader for myself, and as it turned out that dear husband started to use it more than I did, I gave him an own one for Christmas. Now I must check if the books I want to read are available in e-books too - we don't have room for one more traditional book anymore but I am still buying them. Mostly such ones that are not available in an e-book form yet. Or then I don't find the e-book versions, which will annoy me later. Reading an e-book is a much lighter job than reading a normal, traditional book - it is not as heavy so it is easier for my rheumatic hands to hold and I like that very much!
I did the right thing when I added on my cortizone dose from 20 mg to 40 mg daily. My outhaling values (Peak Flow) have risen and I feel better, and breathing is not prohibiting me from doing things anymore. I cannot do whatever but I hope it is getting better. Also the weather has been favorable: not so cold and dry anymore! And I have been able to sleep enough! All important things!
Wooow, things could be better but I feel happy with them as they are now - it is much better anyway than it has been for months! And I hope and believe they are getting even better!
I love you!
Have you noticed? It is some spring in the air today (or have I just woken up from cyto-coma, LOL). The light looks spring-like, bird-song has something of spring in it, and also other noices sound a bit more like spring. Like, car tyres crashing the ice on the street while they go... Funny, it is actually not even February yet... a bit early for spring feelings, but I have been dusting and having the window open and enjoying because I am not freezing... and throwing away quite an amount of paper. There is lots of that sort of thing to do and there is still a limit of what I can do... but at least I will not be getting worse anymore (because there will not be any more cytostates for me for the time being, and I indeed hope never... )
I bought a Bookeen e-book reader for myself, and as it turned out that dear husband started to use it more than I did, I gave him an own one for Christmas. Now I must check if the books I want to read are available in e-books too - we don't have room for one more traditional book anymore but I am still buying them. Mostly such ones that are not available in an e-book form yet. Or then I don't find the e-book versions, which will annoy me later. Reading an e-book is a much lighter job than reading a normal, traditional book - it is not as heavy so it is easier for my rheumatic hands to hold and I like that very much!
I did the right thing when I added on my cortizone dose from 20 mg to 40 mg daily. My outhaling values (Peak Flow) have risen and I feel better, and breathing is not prohibiting me from doing things anymore. I cannot do whatever but I hope it is getting better. Also the weather has been favorable: not so cold and dry anymore! And I have been able to sleep enough! All important things!
Wooow, things could be better but I feel happy with them as they are now - it is much better anyway than it has been for months! And I hope and believe they are getting even better!
I love you!
Sunday, January 2, 2011
Facing the fears, and being happy
Phew! Have been cooking and baking most of the day and have surely overdone it but I have also had wonderful time and once again seen what an amazing family I have and how well it works together! I feel so entirely happy... I have enjoyed the whole day, and especially I have been happy to meet friends and our godson who drove this way on their way home from Lapland.
I have been going on in my thinking about isolating... sometimes, maybe very often, I am indeed too tired to talk to anyone, and sometimes, maybe really very often indeed, I wish I will meet nobody who wants someting from me... but... there is a but indeed...
I love to be needed. And I do need my friends. I love my friends and I miss them even if it is me who is staying away from contacts. And I am still, still truly happy when I meet someone and can have a good talk like tonight. I was even beforehand happy to know we'd meet them, and I am still happy to have met them... it means really a lot.
It is not easy to be a friend to someone who has cancer. Many people, also my friends, are afraid of the disease, and I know many of them have had to face their own fears to be able to stay in touch with me. To many, cancer has till now meant death and loss. A few have lost their parents to cancer. True - I may die of cancer but I am not dying just yet. I may even get well, actually chances are quite big I am getting well. Anyway, I am living in this moment now, and I cannot know of the future. I wish my friends would not try to, either. We have this day together, it is now that we have each other - let us enjoy it now when it is possible, and not worry about the future.
I also know that I am a creature made by God. I cannot tell Him He has made something wrong when creating me. If someone tells otherwise, s/he must be wiser than God is. So I just have to accept myself the way I am - incomplete, unperfect and whatever. I am good that way and I can be happy and proud of myself even though I am not complete. It is being merciful to myself (and I still have to learn a lot about it).
I am happy I am me, and I am happy my family and friends are the wonderful persons they are, I am really privileged in that sense. I am also so proud of my friends, especially those who have dealt with their own fears to be able to stay in touch - I appreciate it more than I can say.
I have been going on in my thinking about isolating... sometimes, maybe very often, I am indeed too tired to talk to anyone, and sometimes, maybe really very often indeed, I wish I will meet nobody who wants someting from me... but... there is a but indeed...
I love to be needed. And I do need my friends. I love my friends and I miss them even if it is me who is staying away from contacts. And I am still, still truly happy when I meet someone and can have a good talk like tonight. I was even beforehand happy to know we'd meet them, and I am still happy to have met them... it means really a lot.
It is not easy to be a friend to someone who has cancer. Many people, also my friends, are afraid of the disease, and I know many of them have had to face their own fears to be able to stay in touch with me. To many, cancer has till now meant death and loss. A few have lost their parents to cancer. True - I may die of cancer but I am not dying just yet. I may even get well, actually chances are quite big I am getting well. Anyway, I am living in this moment now, and I cannot know of the future. I wish my friends would not try to, either. We have this day together, it is now that we have each other - let us enjoy it now when it is possible, and not worry about the future.
I also know that I am a creature made by God. I cannot tell Him He has made something wrong when creating me. If someone tells otherwise, s/he must be wiser than God is. So I just have to accept myself the way I am - incomplete, unperfect and whatever. I am good that way and I can be happy and proud of myself even though I am not complete. It is being merciful to myself (and I still have to learn a lot about it).
I am happy I am me, and I am happy my family and friends are the wonderful persons they are, I am really privileged in that sense. I am also so proud of my friends, especially those who have dealt with their own fears to be able to stay in touch - I appreciate it more than I can say.
Monday, December 27, 2010
Isolating
I am isolating myself from people around me ... I easily withdraw from social contacts nowadays. I feel really tired because of the treatments and my feelings are confused about it. I am blaming myself for being in a bad physical condition, telling myself I ought to excercise more, and then being unsure of how much is enough and how much is too much... and sometimes being just so exhausted that I cannot do anything. The possibility of excercising too much is a fact... my body has to recover from the treatments over and over again and it is put under extreme pressure by that task, and I should not add on it too much. I have just read a booklet about feeling exhausted during the treatments and I know it all... just don't see what is so difficult in accepting it that for once, I am so ill that it is stronger than me and I have to give in a little - I cannot go on doing this and that like I have been used in doing in spite of fibromyalgia, diabetes, blood pressure, sleeping problems, asthma... like I have said a few times, I have got one diagnose after another and went on like there'd be nothing although my body has tried to tell me otherwise. Now I must face the fact that my body is not asking me to slow down anymmore, it is slowing down whether I want it or not and OH MY GOD that it is difficult for me to accept it as it is. At first accepting it feels like submitting or giving up... but I know it is the wisdom of finding a balance. Today it feels like something that makes me cry because I cannot feel that I could ever find a balance, ever quit blaming myself of everything that has happened to me. I am crying a lot these days. If someone would ask me why I could not even tell. Maybe I feel I have failed somehow? Failed staying young, energetic, vital...
Somehow it feels like I ought to let go of my previous life and start anew. I don't mean anything else than simply accepting the facts and loving myself the way I am. I think I am doing neither right now.
On the other hand I think like this too: I don't beleive in things just happening without a reson. I got cancer because I needed it. My life like I lived it was impossible because I did not have time to take care of myself and my well-being. I must change it somehow and I have to see to that I remain in the centre of my life. Something had to happen to make me realize that I cannot go on like that and that is final and I cannot postpone the change anymore. I was burning my candle from both ends and I had been doing so for a long time.
My husband said something really beautiful and clever when I was wondering if I was too weary ("rasittava"). He said I was not weary ("rasittava") but "rasittunut" = exhausted, worn-out (by cancer and its treatments). It does not translate into English but in Finnish it was something really beautiful, the way he used those two words. It transformed me from the subject to the object of weariness.
I wish I could learn to see myself that way too.
Somehow it feels like I ought to let go of my previous life and start anew. I don't mean anything else than simply accepting the facts and loving myself the way I am. I think I am doing neither right now.
On the other hand I think like this too: I don't beleive in things just happening without a reson. I got cancer because I needed it. My life like I lived it was impossible because I did not have time to take care of myself and my well-being. I must change it somehow and I have to see to that I remain in the centre of my life. Something had to happen to make me realize that I cannot go on like that and that is final and I cannot postpone the change anymore. I was burning my candle from both ends and I had been doing so for a long time.
My husband said something really beautiful and clever when I was wondering if I was too weary ("rasittava"). He said I was not weary ("rasittava") but "rasittunut" = exhausted, worn-out (by cancer and its treatments). It does not translate into English but in Finnish it was something really beautiful, the way he used those two words. It transformed me from the subject to the object of weariness.
I wish I could learn to see myself that way too.
Sunday, December 26, 2010
A "normal" morning
This was a "normal" morning in that it had most of the breathing problems my worsening asthma brings with it now as the cancer medicines also kill important cells in the breathing system, and dry out all mucosa in mouth, nose and lower breathing system... this was an abnormal morning in that I had no fibro pains - it seems cancer medication kills them too LOL...
I woke up at 7 and realized that my mouth, nose and everything in the breathing system was horribly, painfully dry and that I was only barely able to breathe, just a little... I jumped up, and sitting on the bed inhaled the assthma attack medicine and then started to wait... after 15 minutes, it finally started to help and I felt the bronchus open a bit so I could breathe better. Meanwhile, I used sprays (2 different kind) to treat the painfully dry and stuck nose. It just absorbes everything, the dryness is so difficult. I inhaled the main asthma medicine after that, and the additional one after that, and continues to drink water... next, two different eye drops, one after another, as soon as I felt comfortable to be in a lying position again... because cancer meds also make eyes dry, like paper... by that, it was 7:40 a.m. already. I went to my daughter's room to measure her blood glucose and give her the insulin... then to the bathroom to brush my teeth which feel like sticky even though I brush them thoroughly; the mouth hygienist said it is because of the dryness. Then to use some tablets which could help in mouth dryness... and again himiditating nose, applying lip balm to dry lips (maybe the third time this morning already).... and when I finally felt that I could risk going out to the staircase where we have no heating, I still checked first from my Android how cold it is out-doors - wow, -11 C ONLY.... took a woollen jacket on me and went downstairs to make tea.
What could I eat for breakfast? What would hurt less when swallowed and going down to stomach because I have had pains when eating? Also the mucosa in esophagus is damaged and I get a painful, burning feeling when food goes down... I took Christmas loaf, liver paste, yoghurt (mild sort) and tea, and hoped for the best. I also doubled the stomach protecting medicine I am taking for these problems. To my surprise I could finally eat all I had taken and even have all my medicine, including cortizone for asthma and another additional asthma medicine, at least the cortizone for sure irritating the stomach too.
When I was ready, it was past 10 a.m. It had taken me more than three hours to accomplish all this, and I had not showered yet, I had not dressed up yet, I had not done anyhting extra like read the morning paper or something like that. All that had kept occupying me till that was cancer and its treatments, and especially the side effects I have chosen to live with, and asthma.
If I had had my usual dizziness, clumsiness, stiffness and pains which come with fibromyalgia and which I don't have now, it would have taken me even more time to accomplish all this.
No doctor has ever talked to me about retiring. I still have 11 years to the official retirement. (Fibromyalgia is not accepted as a reason fore retiring in Finland, and till now, asthma has behaved, sort of...)
I woke up at 7 and realized that my mouth, nose and everything in the breathing system was horribly, painfully dry and that I was only barely able to breathe, just a little... I jumped up, and sitting on the bed inhaled the assthma attack medicine and then started to wait... after 15 minutes, it finally started to help and I felt the bronchus open a bit so I could breathe better. Meanwhile, I used sprays (2 different kind) to treat the painfully dry and stuck nose. It just absorbes everything, the dryness is so difficult. I inhaled the main asthma medicine after that, and the additional one after that, and continues to drink water... next, two different eye drops, one after another, as soon as I felt comfortable to be in a lying position again... because cancer meds also make eyes dry, like paper... by that, it was 7:40 a.m. already. I went to my daughter's room to measure her blood glucose and give her the insulin... then to the bathroom to brush my teeth which feel like sticky even though I brush them thoroughly; the mouth hygienist said it is because of the dryness. Then to use some tablets which could help in mouth dryness... and again himiditating nose, applying lip balm to dry lips (maybe the third time this morning already).... and when I finally felt that I could risk going out to the staircase where we have no heating, I still checked first from my Android how cold it is out-doors - wow, -11 C ONLY.... took a woollen jacket on me and went downstairs to make tea.
What could I eat for breakfast? What would hurt less when swallowed and going down to stomach because I have had pains when eating? Also the mucosa in esophagus is damaged and I get a painful, burning feeling when food goes down... I took Christmas loaf, liver paste, yoghurt (mild sort) and tea, and hoped for the best. I also doubled the stomach protecting medicine I am taking for these problems. To my surprise I could finally eat all I had taken and even have all my medicine, including cortizone for asthma and another additional asthma medicine, at least the cortizone for sure irritating the stomach too.
When I was ready, it was past 10 a.m. It had taken me more than three hours to accomplish all this, and I had not showered yet, I had not dressed up yet, I had not done anyhting extra like read the morning paper or something like that. All that had kept occupying me till that was cancer and its treatments, and especially the side effects I have chosen to live with, and asthma.
If I had had my usual dizziness, clumsiness, stiffness and pains which come with fibromyalgia and which I don't have now, it would have taken me even more time to accomplish all this.
No doctor has ever talked to me about retiring. I still have 11 years to the official retirement. (Fibromyalgia is not accepted as a reason fore retiring in Finland, and till now, asthma has behaved, sort of...)
Wednesday, December 1, 2010
To My Beloved Little Brother (who died Aug 2008)
You died almost three Christmases ago. I used toi send to you photos of our children - you had saved them all, I found them in your drawer. I used to send to you postcards for your name days, birthdays, Christmases, Easters - you had them all too, I found many in your bookshelf on display.The last birthday card too - for your 42nd birthday.
There was a time when we lived in a same household. When I moved out, we grew apart, but never so much apart anyway - and when we had both settled, I with my family and work and you with your house, lady friends, your fishing, your chess and your work, we grew closer again. You started to sms me, telling about your projects. You were often there with a helping hand but never made a fuss of it. When I got married there was no father anymmore to wish the guests welcome to the wedding, so you did it. You were young, but you did it splendidly. You got the wonderful idea of driving family to my wedding by bus, so everyone who wished could come; and you drove the bus through half Finland, and back. We even got a lift in the bus the next morning when you drove us from the hotel we had all three overnighted in. Brother and sister: both had booked in the same hotel, of course.
When you are gone, there is no one left in this world who would be as much like me as you were.
Things don't go the way we'd like them to. You made your decisions, and I believe it made your life shorter. I did not accept your decisions, and I never will - my damn fool little brother - but I love you, and nothing will ever change that.
After your death, I protected your privacy. I did all I could to hide things that I felt you would have liked to be hidden. I protected your private life from all those curious eyes and ears. Rikard and I went through your house and threw away or took for ourselves much of what we thought belonged to your private life. I saved all that you had written, and I cherish it all now. You were talented (of course you were, my brother!).
You wanted to buy me out of our farm but you never started to talk to me about it. Today I have written the document which will finally make me the only owner of that farm. No one thought it would be so. I did not think about the farm at all before you died.
Recently I saw you in yet another photo which Mo Yee had taken about you and your motor bike. You were 16 when you got the driver's licence for that, and you drove to me to Hämeenlinna - and first recently I heard that mother did not know you were there, visiting me. You always came. You came to check my new jobs, you came to see my new apartments, my new home towns, my boyfriends - and you were there immediately when you heard that I was engaged. You wanted to see that man. You came to see every new baby we got. You were the godfather of our firstborn.
The day before your death you came to pick me up from a hotel where I had come with a group. The previous night, you had been driving around to see where we could park our bus when visiting places in your home town. You gave me your car... we talked about lots of things and it felt close, and I am happy we did. I am forever grateful that it was organised so from above - that if you had to die that way, I had just seen you, and I was there to take care of things, and mother.
I have taken care of everything now. Two years after your death I have cancer and I am fighting for my life. Life is not easy for me. And it is always a bit more lonely when you are not here to share it with me.
I had a dream - that we would grow old, and then, when old, sit in a garden and talk - about our parents, about our childhood, about our illnesses that all old people have. Now I know that there is no one to remember the things I do remember. I have no one to talk about them to. I have no one to compare my memories with.
My sweet, dear little brother - I love you. And I miss you, I really do miss you my fool.
With you, I lost part of my own life.
I have cried a lot today. I miss you so much!
There was a time when we lived in a same household. When I moved out, we grew apart, but never so much apart anyway - and when we had both settled, I with my family and work and you with your house, lady friends, your fishing, your chess and your work, we grew closer again. You started to sms me, telling about your projects. You were often there with a helping hand but never made a fuss of it. When I got married there was no father anymmore to wish the guests welcome to the wedding, so you did it. You were young, but you did it splendidly. You got the wonderful idea of driving family to my wedding by bus, so everyone who wished could come; and you drove the bus through half Finland, and back. We even got a lift in the bus the next morning when you drove us from the hotel we had all three overnighted in. Brother and sister: both had booked in the same hotel, of course.
When you are gone, there is no one left in this world who would be as much like me as you were.
Things don't go the way we'd like them to. You made your decisions, and I believe it made your life shorter. I did not accept your decisions, and I never will - my damn fool little brother - but I love you, and nothing will ever change that.
After your death, I protected your privacy. I did all I could to hide things that I felt you would have liked to be hidden. I protected your private life from all those curious eyes and ears. Rikard and I went through your house and threw away or took for ourselves much of what we thought belonged to your private life. I saved all that you had written, and I cherish it all now. You were talented (of course you were, my brother!).
You wanted to buy me out of our farm but you never started to talk to me about it. Today I have written the document which will finally make me the only owner of that farm. No one thought it would be so. I did not think about the farm at all before you died.
Recently I saw you in yet another photo which Mo Yee had taken about you and your motor bike. You were 16 when you got the driver's licence for that, and you drove to me to Hämeenlinna - and first recently I heard that mother did not know you were there, visiting me. You always came. You came to check my new jobs, you came to see my new apartments, my new home towns, my boyfriends - and you were there immediately when you heard that I was engaged. You wanted to see that man. You came to see every new baby we got. You were the godfather of our firstborn.
The day before your death you came to pick me up from a hotel where I had come with a group. The previous night, you had been driving around to see where we could park our bus when visiting places in your home town. You gave me your car... we talked about lots of things and it felt close, and I am happy we did. I am forever grateful that it was organised so from above - that if you had to die that way, I had just seen you, and I was there to take care of things, and mother.
I have taken care of everything now. Two years after your death I have cancer and I am fighting for my life. Life is not easy for me. And it is always a bit more lonely when you are not here to share it with me.
I had a dream - that we would grow old, and then, when old, sit in a garden and talk - about our parents, about our childhood, about our illnesses that all old people have. Now I know that there is no one to remember the things I do remember. I have no one to talk about them to. I have no one to compare my memories with.
My sweet, dear little brother - I love you. And I miss you, I really do miss you my fool.
With you, I lost part of my own life.
I have cried a lot today. I miss you so much!
Sunday, November 21, 2010
What does being a cancer survivor mean to me?
What does being a cancer survivor mean to me?
by Ugri Fenno on Sunday, November 21, 2010 at 8:56pm
I am, according to definition, an acute cancer survivor. It means that I did not die of it, but the treatment procedure started with me and I am now living it through.
What does it mean to me?
It means that nothing is the same than it used to be.
It means that I still have my family and their support, but also that my having cancer is loading them enormously in all ways: our income is less and we have to adjust to that since I don't work; it in turn means that all our planned and unplanned travels have been canceled beceuse right now we cannot afford them. It means that many other things have to be postponed or canceled too, but we can manage as long as I will have a job to return to after I ahve gone through this healing time.
It also means that when I am often tired and must concentrate in getting more fit to survive, and to prohobit the cancer from recurring, I cannot do so much at home either. It means others must share a bigger deal of household work. We have tried to involve children and I think it works as good as it can, they have to be reminded all the time, but my wonderful husband has always shared a huge deal of household work and I am afraid this will loas him even more.
What it also means is emotional stress to my near and loved ones. I know my children are living a hard time emotionally, being worried of me and stressed by the uncertainty cancer brings with itself. It feels awful to me to see that, understand that, and not being able to take that burden away. Anyway, they are just kids! It feels so unreasonable to them.
ANd to my husband. I don't know it he has anyone to talk to about his feelings. He does not talk about his fears to me, or about my possible death, or anything. When he is with me, he denies it all - at least to me. He is a wonderful support, I am just so worried that he takes a too heavy load too. I think we are all protecting each other somehow.
And to me too... I live in uncertainty and I try to find out the strength to live in it, not only now, but during the rest of my life. Sometimes I live one day at a time, sometimes, when it is really hard physikcally and / or mentally, I live one hour at a time. I live more in thne present than in the future. And for some reason ... memories have taken an important and meaningful place in my life and among those things that matter. I mean both good and bad memories.
Right now being a cancer survivor means toi me that my life goes in cycles: cytostate infusion on Friday, after three weeks Thursday lab tests, on Friday cytostates again, and in between all other doc appointments, struggling with side effects, fear of hair loss, mental coping with physical and mental feelings that are rised by the treatments... sometimes I get lost in my feelings and I ahve learned to be really cautious and careful in expressing what I feel - I think I don't have so many people around me who can really take it all so I better invest in future friendships - that they exist also in the future - and not load them so much now. Which leaves me quite alone of course.
But this has also shown to me that I have great friends... and that they are far more capable in expressing their friendship than I had ever thought of. Many take time to be with me, some travel long ways to me... I appreciate it very much. Of course, it makes the contrast really huge to those who don't have time or interest. I try to adjust and not expect anything - after all, friendship is voluntary and I don't want to be a burden to anyone. I don't want anything that anyone must force him- or herself to.
I am painfully aware of that medication affects me in all ways - physical, and mental too. I am painfully aware of that I cannot control myself as much as I'd like to. I do and say things that I should not, and I am all the time afraid I may hurt someone or be too direct or... just anything. I cannot ask for understanding because of being ill and drugged... at least I feel so. It does not give me the right to behave in an inappropriate way. I HATE to behave that way and I'd like to apologise and talk things through when it happens....
I am also very sensitive myself and get hurt easily - which I don't want to say because I feel uncvmfortable if I think people are being overly careful with me. I am sensitive - very sensitive - about my privacy, for example. I hear and read things in a different way sometimes - "understand" things that are not really there. I can say, in general, that ALL things mean a lot more to me now.
But being a survivor also means to me that I have survived the acute pass-away. It means that there is hope in my life, and hope is in a very important place in my life right now. It also means that I am doing really everything that I can and that is in my power to survive in the long-term, too. To survive permanently. It means ups and downs, and constant starting from zero... and constant fight against depression which could be caused by the physical conditon collapsing after each treatment...
And it means constant balancing with everything that I ahve listed. Surprisingly, it also means that my days are pretty busy - if I include everything that my rehabilitation needs,a nd taking care of the financies (which means writing continuous allpications to the social security), and running errands and doing some household work - I am full.time occupied anyway, even if I don't work. But I think it is worth it.I am worth the effort now. I have never invested in myself like this. I feel that now I have to. Not only for myself, but for all those who love me and care for me and who want to share many more years with me.
God speaks to me very directly, like He always has. In sermons, preaches, through friends, via the Bible. ANd that, though it comes last, is not the least thing in my life. I would be really lost without faith.
by Ugri Fenno on Sunday, November 21, 2010 at 8:56pm
I am, according to definition, an acute cancer survivor. It means that I did not die of it, but the treatment procedure started with me and I am now living it through.
What does it mean to me?
It means that nothing is the same than it used to be.
It means that I still have my family and their support, but also that my having cancer is loading them enormously in all ways: our income is less and we have to adjust to that since I don't work; it in turn means that all our planned and unplanned travels have been canceled beceuse right now we cannot afford them. It means that many other things have to be postponed or canceled too, but we can manage as long as I will have a job to return to after I ahve gone through this healing time.
It also means that when I am often tired and must concentrate in getting more fit to survive, and to prohobit the cancer from recurring, I cannot do so much at home either. It means others must share a bigger deal of household work. We have tried to involve children and I think it works as good as it can, they have to be reminded all the time, but my wonderful husband has always shared a huge deal of household work and I am afraid this will loas him even more.
What it also means is emotional stress to my near and loved ones. I know my children are living a hard time emotionally, being worried of me and stressed by the uncertainty cancer brings with itself. It feels awful to me to see that, understand that, and not being able to take that burden away. Anyway, they are just kids! It feels so unreasonable to them.
ANd to my husband. I don't know it he has anyone to talk to about his feelings. He does not talk about his fears to me, or about my possible death, or anything. When he is with me, he denies it all - at least to me. He is a wonderful support, I am just so worried that he takes a too heavy load too. I think we are all protecting each other somehow.
And to me too... I live in uncertainty and I try to find out the strength to live in it, not only now, but during the rest of my life. Sometimes I live one day at a time, sometimes, when it is really hard physikcally and / or mentally, I live one hour at a time. I live more in thne present than in the future. And for some reason ... memories have taken an important and meaningful place in my life and among those things that matter. I mean both good and bad memories.
Right now being a cancer survivor means toi me that my life goes in cycles: cytostate infusion on Friday, after three weeks Thursday lab tests, on Friday cytostates again, and in between all other doc appointments, struggling with side effects, fear of hair loss, mental coping with physical and mental feelings that are rised by the treatments... sometimes I get lost in my feelings and I ahve learned to be really cautious and careful in expressing what I feel - I think I don't have so many people around me who can really take it all so I better invest in future friendships - that they exist also in the future - and not load them so much now. Which leaves me quite alone of course.
But this has also shown to me that I have great friends... and that they are far more capable in expressing their friendship than I had ever thought of. Many take time to be with me, some travel long ways to me... I appreciate it very much. Of course, it makes the contrast really huge to those who don't have time or interest. I try to adjust and not expect anything - after all, friendship is voluntary and I don't want to be a burden to anyone. I don't want anything that anyone must force him- or herself to.
I am painfully aware of that medication affects me in all ways - physical, and mental too. I am painfully aware of that I cannot control myself as much as I'd like to. I do and say things that I should not, and I am all the time afraid I may hurt someone or be too direct or... just anything. I cannot ask for understanding because of being ill and drugged... at least I feel so. It does not give me the right to behave in an inappropriate way. I HATE to behave that way and I'd like to apologise and talk things through when it happens....
I am also very sensitive myself and get hurt easily - which I don't want to say because I feel uncvmfortable if I think people are being overly careful with me. I am sensitive - very sensitive - about my privacy, for example. I hear and read things in a different way sometimes - "understand" things that are not really there. I can say, in general, that ALL things mean a lot more to me now.
But being a survivor also means to me that I have survived the acute pass-away. It means that there is hope in my life, and hope is in a very important place in my life right now. It also means that I am doing really everything that I can and that is in my power to survive in the long-term, too. To survive permanently. It means ups and downs, and constant starting from zero... and constant fight against depression which could be caused by the physical conditon collapsing after each treatment...
And it means constant balancing with everything that I ahve listed. Surprisingly, it also means that my days are pretty busy - if I include everything that my rehabilitation needs,a nd taking care of the financies (which means writing continuous allpications to the social security), and running errands and doing some household work - I am full.time occupied anyway, even if I don't work. But I think it is worth it.I am worth the effort now. I have never invested in myself like this. I feel that now I have to. Not only for myself, but for all those who love me and care for me and who want to share many more years with me.
God speaks to me very directly, like He always has. In sermons, preaches, through friends, via the Bible. ANd that, though it comes last, is not the least thing in my life. I would be really lost without faith.
What is a cancer survivor? http://www.wisegeek.com/what-is-a-cancer-survivor.htm by Ugri Fenno on Sunday, November 21, 2010 at 7:52pm
What is a cancer survivor? http://www.wisegeek.com/what-is-a-cancer-survivor.htm
by Ugri Fenno on Sunday, November 21, 2010 at 7:52pm
A cancer survivor is generally defined as anybody who is either in the process of surviving cancer or who has already had treatment for cancer. With that definition, anybody who currently has cancer or who has had cancer at some point in his or her life can be considered a cancer survivor. There are some difficulties associated with surviving cancer, some of which are physical and some of which are emotional or social.
Many people break cancer survivors up into categories based on what phase of cancer survival they are currently in. The first phase is often called acute survivorship, and it would generally include anybody who is being treated or still suffering with the direct effects of cancer. The second phase is called extended survivorship, and this generally includes all people who have went through treatment and are trying to continue their lives afterward. Both phases of survivorship have different challenges that individuals must overcome.
When trying to survive cancer, there are often many lifestyle changes that a person has to make. For example, many people may need to give up certain poor habits. Others are generally required to change their diets or take certain supplements and medications. After having cancer, many people make a concerted effort to improve their overall health, and this can involve increasing the amount of exercise they get.
Another major challenge that many cancer survivors have is mental. For example, they may have a lot of fear about the disease recurring. These anxieties can make life very difficult for many cancer survivors. Sometimes people may worry that every sickness they get may have something to do with their cancer returning, and learning to deal with these fears is generally a big part of overcoming cancer.
A cancer survivor can often have lingering physical problems that can make life more difficult. For example, a lung cancer survivor may have difficulties with breathing that will never go away. Sometimes during cancer treatment, doctors are required to remove certain body parts or organs, and this can leave people with permanent challenges.
Some cancer survivors may have problems in their social or professional lives. They may worry about telling new people about their cancer because they fear it may lead to special treatment or being singled out. When people get cancer, it can also be a very stressful time for family and friends, and this can cause people to behave in inappropriate ways, which can lead to long-term difficulties in relationships.
by Ugri Fenno on Sunday, November 21, 2010 at 7:52pm
A cancer survivor is generally defined as anybody who is either in the process of surviving cancer or who has already had treatment for cancer. With that definition, anybody who currently has cancer or who has had cancer at some point in his or her life can be considered a cancer survivor. There are some difficulties associated with surviving cancer, some of which are physical and some of which are emotional or social.
Many people break cancer survivors up into categories based on what phase of cancer survival they are currently in. The first phase is often called acute survivorship, and it would generally include anybody who is being treated or still suffering with the direct effects of cancer. The second phase is called extended survivorship, and this generally includes all people who have went through treatment and are trying to continue their lives afterward. Both phases of survivorship have different challenges that individuals must overcome.
When trying to survive cancer, there are often many lifestyle changes that a person has to make. For example, many people may need to give up certain poor habits. Others are generally required to change their diets or take certain supplements and medications. After having cancer, many people make a concerted effort to improve their overall health, and this can involve increasing the amount of exercise they get.
Another major challenge that many cancer survivors have is mental. For example, they may have a lot of fear about the disease recurring. These anxieties can make life very difficult for many cancer survivors. Sometimes people may worry that every sickness they get may have something to do with their cancer returning, and learning to deal with these fears is generally a big part of overcoming cancer.
A cancer survivor can often have lingering physical problems that can make life more difficult. For example, a lung cancer survivor may have difficulties with breathing that will never go away. Sometimes during cancer treatment, doctors are required to remove certain body parts or organs, and this can leave people with permanent challenges.
Some cancer survivors may have problems in their social or professional lives. They may worry about telling new people about their cancer because they fear it may lead to special treatment or being singled out. When people get cancer, it can also be a very stressful time for family and friends, and this can cause people to behave in inappropriate ways, which can lead to long-term difficulties in relationships.
Monday, November 15, 2010
Trying to control feelings
I had a really good discussion in chat with darling Mo Yee. She asked how I am and although I was having lunch and got that in my cell phone instead of laptop, I replied to her... sharing 28 years old memories from her visit in Finland has been really therapeutic and has felt so good that I have sometimes had tears in my eyes, looking at all those photos... it is such a happy feeling!
I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.
It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.
Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.
Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.
Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.
I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.
There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.
I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.
But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.
But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)
I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.
It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.
Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.
Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.
Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.
I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.
There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.
I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.
But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.
But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)
Thursday, November 11, 2010
Asthma gets nasty
I have suffered the one-week-long post-treatment blues with sick feeling, head ache, odd feelings here and there, digestive discomforts and so on. Today I felt well and thought it would be a perfect day for a walk since I have developed an obsession for fresh air although I am not very skilled or in a very good condition.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.
That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.
But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.
Friday, November 5, 2010
Hair loss and new massacre Nov 5th, 2010
I am back home from the 2nd cytostate infusion. Web cam photo of course but I do look quite pale right now, a massacre going on in my body. Wanted to document that I still have my own hair although I have hair loss these days (it started yesterday) - still my hair was what all nurses came to comment on because I still have it! (I have substitutes too so I am prepared.) Used the ice cap even this time. It is supposed to prevent hair loss - works for some, doesn't work for others but does not harm and feels nice so I use it as long as it seems to be useful. Anyway, the first two weeks after the first treatment (with then ice cap on) I did not lose ONE SINGLE hair which is quite odd.
I was also told today that my eye lashes and eye brows are not going to lose, I am not going to get that medication which is driving all body hair away. Good; I was already wondering how I could make-up eye brows to which I have never done anything, and what would fake eye lashes look when fixed on with my shaky fingers - ? LOL
I took the early bus to Vaasa (113 km according to the bus fare ticket, 18, 40 €), and took a taxi back - but this time I feel a bit better and not so odd in my head than last time, that actually, I could have driven myself. But social security is paying, I pay only 9,25 € of the 140 something € taxi bill. I am getting something in refund to all tax money I have paid to this society for all these years. - The early bus leaves 5:45, which makes me stand up at 4:30 to catch it - and it is in Vaasa, precisely at Central Hospital gate, at 7:30. Then I have one hour to spend in the hospital cafe which is a lovely little place in the beautiful entrance hall and serves lots of nice treats, healthy and less healthy. I had a roll with cheese, and tea.
They had a bit difficulties getting the drop set. Firts they tried on the upper side of the hand. It hurt somewhat enormously though I am not usually sensitive to that kind of things. And it did not work either. Then came another nurse and put it on the inner side of the arm. It hurt too but less, and it worked so I said nothing. But it went on hurting all the time it was in there.Several hours.
First I get medication against feeling sick; a capsel to be had before the drop, and then some 300 ml fluid infused. Then they "wash" the tubes by running NaCl-fluid for a while, then comes the first cytostate, approximately 300 ml too. Again washing with NaCl fluid (all goes into the vein of course), then the second cytostate. The last cytostate, the third, is coloured ruby and it is eroding: if it touches the tissue, it will wear it away with chemical reaction. Therefore they add NaCl as side drop when infusing this, and therefore they also need me to say if I have any feelings at all in the arm when that infusion is done - because the vein could be broken and then it would cause damage in the tissue. It does less damage to the vein. And this one they rinse off the tubes extra carefully. Last, I get the remaining NaCl-fluid (1000 ml allthogether).
I chose to sit in an adjustable (by remote, LOL) easy chair. A young woman was sleeping a few beds away from me and snoring loudly and happily. An elderly man sat beside me in the next easy chair; he had maintaining treatment, means that his cancer, whatever it was, cannot be cured but he can live with it when he receives a cytostate treatment to keep the cancer in control. He said he had been there last time 7 months ago (I go every 3 weeks). An elderly man came with his wife, they only stayed for a little while, as long as it took to take one small dose. His voice was really bad, and he was coughing - might it have been cancer in his throat? Sounded so, because his wife was looking for support from the nurse as it appeared to be so that her husband was refusing to eat and was not taking in enough calories.
I also saw into the "suite" from where i was sitting. They took in a man who was from some department in the hospital because he came in a hospital bed and was then moved to the bed in the suite (for worse patients). He was bare skin and bones, no muscles at all. Later I heard from the breast cancer nurse whom I was seeing that in this hospital every patient is getting the best treatment there is in the world, if s/he needs it. While in Helsinki, the capital, where the patients are more, not all are allowed to have the most expensive treatments. - I have seen that: they used some radio active matter on me before the operation, and the surgeon was happy because they had it - she said that it is not always available in the world market because it is not "sexy" = it is not used in the munitions - it is not used in war technology.
Then I went to the kitchen they have there and found some roll and juice and yoghurt, and had a snack. It was already almost 6 hours since I had eaten breakfast.
Then I met the breast cancer nurse. She had already been to see me several times during the infusion. She told me about the eye brows and eye lashes and even that it is POSSIBLE to keep the own hair - that it actually happens. Well, we will see. As I said, I have substitutes...
We talked about my good luck with good friends and wonderful family, and then we talked about the kids and how they take it. Right now that is what is worrying me most. And my husband.... he is working too hard AND worrying and taking care of me... he is WONDERFUL... really a saint... and I don't know what to do to ease his burden. I try my best - and the most essential thing is to get well of course.
And I am doing my best.
Blood tests came back showing my body has some Finnish "sisu" - an amzing ability to recover from massacre of fast dividing cells. All important values had come back to normal, most had even rised from what they were.
The doctor had not been satisfied with the echo that was seen in liver. She wants to have a ct scan made to make up her mind on whether it is cancer or not. Which means that she thinks cancer is possible also in liver. Ok - if it is, then I take that too. Will find out in three weeks... I only hope that if it is cancer, it has not time to grow too much, or spread.
I was also told today that my eye lashes and eye brows are not going to lose, I am not going to get that medication which is driving all body hair away. Good; I was already wondering how I could make-up eye brows to which I have never done anything, and what would fake eye lashes look when fixed on with my shaky fingers - ? LOL
I took the early bus to Vaasa (113 km according to the bus fare ticket, 18, 40 €), and took a taxi back - but this time I feel a bit better and not so odd in my head than last time, that actually, I could have driven myself. But social security is paying, I pay only 9,25 € of the 140 something € taxi bill. I am getting something in refund to all tax money I have paid to this society for all these years. - The early bus leaves 5:45, which makes me stand up at 4:30 to catch it - and it is in Vaasa, precisely at Central Hospital gate, at 7:30. Then I have one hour to spend in the hospital cafe which is a lovely little place in the beautiful entrance hall and serves lots of nice treats, healthy and less healthy. I had a roll with cheese, and tea.
They had a bit difficulties getting the drop set. Firts they tried on the upper side of the hand. It hurt somewhat enormously though I am not usually sensitive to that kind of things. And it did not work either. Then came another nurse and put it on the inner side of the arm. It hurt too but less, and it worked so I said nothing. But it went on hurting all the time it was in there.Several hours.
First I get medication against feeling sick; a capsel to be had before the drop, and then some 300 ml fluid infused. Then they "wash" the tubes by running NaCl-fluid for a while, then comes the first cytostate, approximately 300 ml too. Again washing with NaCl fluid (all goes into the vein of course), then the second cytostate. The last cytostate, the third, is coloured ruby and it is eroding: if it touches the tissue, it will wear it away with chemical reaction. Therefore they add NaCl as side drop when infusing this, and therefore they also need me to say if I have any feelings at all in the arm when that infusion is done - because the vein could be broken and then it would cause damage in the tissue. It does less damage to the vein. And this one they rinse off the tubes extra carefully. Last, I get the remaining NaCl-fluid (1000 ml allthogether).
I chose to sit in an adjustable (by remote, LOL) easy chair. A young woman was sleeping a few beds away from me and snoring loudly and happily. An elderly man sat beside me in the next easy chair; he had maintaining treatment, means that his cancer, whatever it was, cannot be cured but he can live with it when he receives a cytostate treatment to keep the cancer in control. He said he had been there last time 7 months ago (I go every 3 weeks). An elderly man came with his wife, they only stayed for a little while, as long as it took to take one small dose. His voice was really bad, and he was coughing - might it have been cancer in his throat? Sounded so, because his wife was looking for support from the nurse as it appeared to be so that her husband was refusing to eat and was not taking in enough calories.
I also saw into the "suite" from where i was sitting. They took in a man who was from some department in the hospital because he came in a hospital bed and was then moved to the bed in the suite (for worse patients). He was bare skin and bones, no muscles at all. Later I heard from the breast cancer nurse whom I was seeing that in this hospital every patient is getting the best treatment there is in the world, if s/he needs it. While in Helsinki, the capital, where the patients are more, not all are allowed to have the most expensive treatments. - I have seen that: they used some radio active matter on me before the operation, and the surgeon was happy because they had it - she said that it is not always available in the world market because it is not "sexy" = it is not used in the munitions - it is not used in war technology.
Then I went to the kitchen they have there and found some roll and juice and yoghurt, and had a snack. It was already almost 6 hours since I had eaten breakfast.
Then I met the breast cancer nurse. She had already been to see me several times during the infusion. She told me about the eye brows and eye lashes and even that it is POSSIBLE to keep the own hair - that it actually happens. Well, we will see. As I said, I have substitutes...
We talked about my good luck with good friends and wonderful family, and then we talked about the kids and how they take it. Right now that is what is worrying me most. And my husband.... he is working too hard AND worrying and taking care of me... he is WONDERFUL... really a saint... and I don't know what to do to ease his burden. I try my best - and the most essential thing is to get well of course.
And I am doing my best.
Blood tests came back showing my body has some Finnish "sisu" - an amzing ability to recover from massacre of fast dividing cells. All important values had come back to normal, most had even rised from what they were.
The doctor had not been satisfied with the echo that was seen in liver. She wants to have a ct scan made to make up her mind on whether it is cancer or not. Which means that she thinks cancer is possible also in liver. Ok - if it is, then I take that too. Will find out in three weeks... I only hope that if it is cancer, it has not time to grow too much, or spread.
Sunday, October 10, 2010
Understanding the triple negative breast cancer
Haaa - there is a definition for everything, my breast cancer included: It is triple negative. What does it mean then? It's what I have said - no targeteed drugs to be used, lower survival rate than with the other types (approximately 1 in 4 dies of it in a few years, and if it is found spread into other organs like liver or brain, life expectancy is approximately 13 months. According to statistics, that is. I have always believed in knowing my enemy. And my life is not statistics. Against all odds I am still alive. :) )
So I have the stage-three (most aggressive) "triple negative" breast cancer, an aggressive form of the disease that disproportionally strikes younger women and Hispanic and African-Americans (and me), and is impervious to the newest treatments. Yet my tumor was found in a very early stage so that gives some hope - also it was, so it seemed, not spread yet since there was nothing in the armpit lymph nodes.If that is to proove anything. I believe it is, since I don't know about anything else.
I am studying more of it so I save the links here to have them somewhere when I have time to concentrate.
http://dailyme.com/story/2010101000000699/shedding-light-triple-negative-breast-cancer.html
http://www.baltimoresun.com/health/breastcancer/bs-hs-triple-negative-breast-cancer-20101001,0,1038153.story
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor?icid=main|main|dl3|sec1_lnk3|175568&a_dgi=aolshare_twitter
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor-2?a_dgi=aolshare_twitter
http://www.dddmag.com/news-Researchers-Image-Triple-Negative-Breast-Cancer-with-PET-42210.aspx
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=25387
http://www.congoo.com/news/addstorycomment.aspx?st=124935795&Channel_ID=22&Category_ID=262
http://www.myfoxchattanooga.com/dpp/health/Cancer-on-the-Frontlines-How-I-Beat-Triple-Negative-Breast-Cancer_09370950?utm_source=twitterfeed&utm_medium=twitter
http://www.koat.com/health/24904938/detail.html
So I have the stage-three (most aggressive) "triple negative" breast cancer, an aggressive form of the disease that disproportionally strikes younger women and Hispanic and African-Americans (and me), and is impervious to the newest treatments. Yet my tumor was found in a very early stage so that gives some hope - also it was, so it seemed, not spread yet since there was nothing in the armpit lymph nodes.If that is to proove anything. I believe it is, since I don't know about anything else.
I am studying more of it so I save the links here to have them somewhere when I have time to concentrate.
http://dailyme.com/story/2010101000000699/shedding-light-triple-negative-breast-cancer.html
http://www.baltimoresun.com/health/breastcancer/bs-hs-triple-negative-breast-cancer-20101001,0,1038153.story
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor?icid=main|main|dl3|sec1_lnk3|175568&a_dgi=aolshare_twitter
http://www.aolhealth.com/condition-center/breast-cancer/awareness-month/triple-negative-breast-cancer-survivor-2?a_dgi=aolshare_twitter
http://www.dddmag.com/news-Researchers-Image-Triple-Negative-Breast-Cancer-with-PET-42210.aspx
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=25387
http://www.congoo.com/news/addstorycomment.aspx?st=124935795&Channel_ID=22&Category_ID=262
http://www.myfoxchattanooga.com/dpp/health/Cancer-on-the-Frontlines-How-I-Beat-Triple-Negative-Breast-Cancer_09370950?utm_source=twitterfeed&utm_medium=twitter
http://www.koat.com/health/24904938/detail.html
Saturday, October 9, 2010
Doctor consultation
I realized that it has gone 6 weeks from the surgery and it means that I may go swimming again - my daughter will be delighted because meanwhile, she has not had anyone to go to the swimming hall with. Her big sister has not been interested, and because she has diabetes, I ahve not let her go with her best friend because she has some sort of problem with lack of concentration - and if someone goes swimming she needs to keep a bit focused on how our daughter is - in case her blood sugar would sink too low and she would not realize it by herself. Usually she does but in the water not always, perhaps because of the difference of the element - it burns more sugar than normal motioning.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
I was surprised on how exhausted the doctor consultation made me. Since I got ill I have not been driving such distances myself very often - the central hospital is 100 km from us. I drove to the podiatrician once and she was astonished that I did - "Wow, now I can tell everyone that I have a client who comes from 100 kms distance!" LOL - and I was to the lung policlinic, and I was alone when I first went to see the surgeon and all the other specialists before the surgery but otherwise, my wonderful husband has been driving me and coming with me and he has taken care of all the practical things... and now it was about the treatments and it is never easy - and I have a lot to be considered over an average patient due to all the other conditions that I have.
I use to prepare writing down everything I want to ask the doctor about, and everything Rikard says that he wants to know too. Here the doctors are really informative, they take time to explain things and they answer questions and explain again if one does not understand it at once. I had been studying material delivered by the cancer organization and I had been reading a few books on the subject so I knew a great deal already before - but I did not know anything about the drugs. People are most concerned about the side effects and there is plenty of material about it but not so much about the drugs themselves. Rikard found a two-year-old article from a scientific publication that listed all the drugs used and all the drugs being tested - and I had copied that one and put it in my notebook to see at one glance what the doctor was talking about. (This is just to explain how excited I was, or nervous, or whatever the word - means that I was concentrating enormously). My tumor was hormone negative, fast-growing and fast-spreading one. Not to be treated with hormones, that is. Hormones would not be effective. (A pity on one hand but on the other hand I am happy - I like to remain in my own hormones unaltered, so that they may live their own life as normally as possible). I was hoping it would turn out to be HER2-protein-positive but it turned to be immune to that protein too (no receptors found) so this precise medication cannot be used either. Then the doctor had considered that it would be a two-phase treatment: first, three doses of TAXOTERE and then three doses of CEF which contains three different medications. Neither of these were on my list and I have not yet had time to find out anything about them so I cannot tell much more. I was given a patient guide to those who receiving adjuvant treatments to breast cancer, and I was taken to see the day department where the treatment is given. It looked very cosy, only a few patients at a time and each having their own nurse, doctor available all the time - felt very safe and well organized.
But it turned out there was a problem. TAXOTERE would cause problems in breathing which is not a succeeded combination with asthma, and therefore the doctors will negotiate about its safety together and make up their minds first after consulting other specialists. Again, it would be a pity to lose the most efficient drug since the tumor is already of a difficult type to be treated. On the other hand, it would also be a pity to suffocate already from the first dose (I think this is starting to be some sort of a cancer patient joking). Additionally, something in TAXOTERE also makes it that it causes extreme foot pain - and the doctor got dubious about that too because I have fibromyalgia. - If it will not be TAXOTERE the first three times, then it will be CEF all the six times; not as effective but the next-best solution. After all, nothing our Heavenly Father would not be able to solve!
I have a lot to learn about this - that I cannot know things so much on beforehand. That I have to live one moment at a time. That I have to be prepared to leave from this earth practically any minute. Anything can go wrong, as I have learned from the drugs. - I have been driving the car for so long that leaving this earth all in a sudden is not quite a strange thought to me, it has never been. ANything can happen in the traffic. any time. Still, now it is present in another way which feels a bit more close and concrete. It is not a bad feeling, just that I am trained in planning things ahead and this kind of adjusting is strange to me. As well as focusing on myself too. Suddenly it is my schedule that goes over everything else - holidays, celebrations, everything. Suddenly it is my disease that dictates the family's plans, my employer's doings, I don't even know what everything. I am not used in it. I guess no mother or amployee is.
So - the cytostates will be given in six different doses, over about 6 months' time. After that, three or four weeks again for the body to recover, and then the radial therapy for 5 - 6 weeks. And so far, I will be on sick leave at least till the beginning of December, most likely longer. My hemoglobine has been sinking again so when it is already low to begin with, I will probably be too tired to go to work anyway.
The first treatment will be on Friday next week - the 15th, which is, funny enough, the "Wear Pink" Day as this month is Breast Cancer Awareness Month. Funny - I think I will be wearing pink that day, having at least the colour to cheer me up if it gets too tough otherwise. I don't have to drive myself, I will be paid a taxi by the social security - the doctor will write a certificate for me for that. That is such luxury! And something I am not used to, either.
Life goes on.
Tuesday, October 5, 2010
Managing the daily walk is really challenging these days when fibro makes muscles stiff - but so far it has been half an hour each day, and the weather has been really fine so I think after all I feel great about the walks - I feel that I HAVE TO go and walk to feel that it is me who is in charge of my life and doings, NOT fibro, NOT cancer...
Even a longer walk today! :)
Even a longer walk today! :)
Hair loss, cyto
In case the cytostates that I will be getting will cause me hair loss, I have thought of cutting my hair a lot shorter than it has been for 40 years, in advance. Must feel odd - and fun! :)
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