Posts
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.
Monday, December 27, 2010
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! :)
Monday, September 27, 2010
"Let nothing upset you..."
Via Make a Note: "Let nothing upset you, let nothing startle you. All things pass; God
does not change. Patience wins all it seeks. Whoever has God lacks
nothing; God alone is enough." --St Teresa Avila (1515-1582).
does not change. Patience wins all it seeks. Whoever has God lacks
nothing; God alone is enough." --St Teresa Avila (1515-1582).
Saturday, September 25, 2010
Sept 25th 2010 - Bad News, But Life Goes On!
Bad news, but life goes on!
by Ugri Fenno on Saturday, September 25, 2010 at 3:21pm
I have been to the surgeon. She punctured the hard odd thing which appeared to be tissue fluid; now it is away and I feel easier, at least for the time being. She said it is perfectly normal to get it, so I haven't done anything wrong. Also the extra bleeding was perfectly normal, but all the blood had already been transported away by body's own declutterers.
Then there were not-so-good news too: Unlike previously supposed, the tumor is, or was, of a very aggressive sort, the worst of them all. Surgery had succeeded 100 % and they seem to think that was it - nothing else found in the breast, and not in the lymph nodes either, though only the two first lymph nodes were taken away and had a closer look at (the first where the vandering cancer cells would go to after having departed from the main tumor). It is still reasonable to suppose that although it was so very aggressive, it probably has not sent anything in other parts of the body. I feel healthy anyway - completely unlike prior to the surgery.
But no one really knows when it is cancer. I have been invited to the onchological policlinic in the central hospital to agree about the treatment plan. It will be chemotherapy first, then radial therapy, because this is much more serious than what it first seemed to be. The tumor is hormone negative, so (thanks God!) no hormone therapy will be needed. (Which means that it is also less easy to treat it of course.) But I have been told yesyerday that they are doing some research and that they are perhaps asking if I'd like to participate - which would mean still some more medication - but of this I don't know anything else yet.
So I didn't get a nice enemy, but the worst of them all. I realize I don't care for myself so much (though of course I'd love to stay alive!) but I will do all I can to be here as long as I can - because of my loved ones who mean everything to me.
I hope to remain happy and positive though - anyway, today I feel fine and I am very much alive - worries are for tomorrow. Just that it is time to start taking this beast seriously! :D
Today it feels that the tissue fluis is filling up again... I HATE IT! I REALLY DO! Puncturing does not even hurt or anything but I hate it still. WHY CANNOT IT JUST BEHAVE!!!!
by Ugri Fenno on Saturday, September 25, 2010 at 3:21pm
I have been to the surgeon. She punctured the hard odd thing which appeared to be tissue fluid; now it is away and I feel easier, at least for the time being. She said it is perfectly normal to get it, so I haven't done anything wrong. Also the extra bleeding was perfectly normal, but all the blood had already been transported away by body's own declutterers.
Then there were not-so-good news too: Unlike previously supposed, the tumor is, or was, of a very aggressive sort, the worst of them all. Surgery had succeeded 100 % and they seem to think that was it - nothing else found in the breast, and not in the lymph nodes either, though only the two first lymph nodes were taken away and had a closer look at (the first where the vandering cancer cells would go to after having departed from the main tumor). It is still reasonable to suppose that although it was so very aggressive, it probably has not sent anything in other parts of the body. I feel healthy anyway - completely unlike prior to the surgery.
But no one really knows when it is cancer. I have been invited to the onchological policlinic in the central hospital to agree about the treatment plan. It will be chemotherapy first, then radial therapy, because this is much more serious than what it first seemed to be. The tumor is hormone negative, so (thanks God!) no hormone therapy will be needed. (Which means that it is also less easy to treat it of course.) But I have been told yesyerday that they are doing some research and that they are perhaps asking if I'd like to participate - which would mean still some more medication - but of this I don't know anything else yet.
So I didn't get a nice enemy, but the worst of them all. I realize I don't care for myself so much (though of course I'd love to stay alive!) but I will do all I can to be here as long as I can - because of my loved ones who mean everything to me.
I hope to remain happy and positive though - anyway, today I feel fine and I am very much alive - worries are for tomorrow. Just that it is time to start taking this beast seriously! :D
Today it feels that the tissue fluis is filling up again... I HATE IT! I REALLY DO! Puncturing does not even hurt or anything but I hate it still. WHY CANNOT IT JUST BEHAVE!!!!
Wednesday, September 22, 2010
Wednesday September 22nd
Sometimes silence is golden, and sometimes it just means I am resting. I am taki...ng some much needed time to rest and restore. I hope you always remember to do the same for yourself. Be back soon! (FibroHaven in Facebook. And I wrote of myself:)
Me too! I wish people would understand what I am going through. It is not easy by any means, especially with these complications which are making my legs spaghetti. Now people come with their demands and needs... but I don't care so much anymore. I am learning - thoough it is hard - to put myself first. Very selfish - and very necessary when you are seriously ill. Quote from MArilyn Monroe: if you cannot take me when I'm not okey, you don't deserve me when I am on my best!
Received an invitation to the onchological policlinic in the central hospital, it will be on the 7th of October. That policlinic takes care of radial and chemotherapy for cancer patients. I have already been there once, to see the breast cancer nurse, but that was just shortly. I don't know why but it feels sad to receive the invitation although I knew it was coming. It just means that another weary part of the treatment is about to start. I can see now why they talk about being brave, in connection to breast cancer. Among other things of course. Maybe it is that the invitation reminded me of that it is a disease that actually can cause death.
Me too! I wish people would understand what I am going through. It is not easy by any means, especially with these complications which are making my legs spaghetti. Now people come with their demands and needs... but I don't care so much anymore. I am learning - thoough it is hard - to put myself first. Very selfish - and very necessary when you are seriously ill. Quote from MArilyn Monroe: if you cannot take me when I'm not okey, you don't deserve me when I am on my best!
Received an invitation to the onchological policlinic in the central hospital, it will be on the 7th of October. That policlinic takes care of radial and chemotherapy for cancer patients. I have already been there once, to see the breast cancer nurse, but that was just shortly. I don't know why but it feels sad to receive the invitation although I knew it was coming. It just means that another weary part of the treatment is about to start. I can see now why they talk about being brave, in connection to breast cancer. Among other things of course. Maybe it is that the invitation reminded me of that it is a disease that actually can cause death.
Tuesday, September 21, 2010
September 20th, 2010
Got more bed rest due to infection in the operated area. Got awfully sore and achy all over and thought it was fibromyalgia; then realized it was my temperature rising. Went to doctor, and now I am on antibiotics again, and really exhausted. – 1 päivä sitten – välittäjänä Facebook
September 19th, part 2
has had a whole-pain day today. Every single muscle and joint is aching. Managed to get myself and my hair washed though, applied even cream on face and brushed teeth - had brunch - reloaded the washing machine a few times. Finished Leena Lehtolainen's novel. Tried to organize desk but lost tools immediately... had 2 hours rest.... anyway, pretty well done in a day like this! :) – 2 päivää sitten – välittäjänä Facebook
September 19th, 2010
Got hooked: Leena Lehtolainen's new novel "Minne tytöt kadonneet" is something I find almost impossible to let out of my hands. Leena Lehtolainen is a Finnish author who has been translated to many languages. This new one tells about disappearing girls, it has just been published in Finnish. – 2 päivää sitten – välittäjänä Facebook
September 15th, 2010
Been to lung policlinic today in the central hospital. Routine check, nothing else. After that, had lunch in my own company, then drove to an art museum, spent time exploring two exhibitions and found out interesting things... then got completely wet in rain storm when walking to the car. Loved to spend the day in my own company. – 6 päivää sitten – välittäjänä Facebook
September 14th, 2010
Feeling sad today - mainly because I think I don't accomplish as much as I should. Must find a positive way of thinking. Anyway, I am getting better every day. That is something to be happy of! – 14 Syys – välittäjänä Facebook
September 10th, 2010
"I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best." — Marilyn Monroe – 10 Syys – välittäjänä Facebook
September 9th, 2010
Vesicle is history but I am still taking it easy and NOT lifting or carrying. Yesterday I spent mostly resting. Today it seems even the blackmark is changing color which meands there is no new bleeding. Also the rash seems to have disappeared. And the skin around the scars has been renewed since the old skin is peeling off. It's almost noon today, and I have not been taking ANY pain killer yet! Yippee! :) – 9 Syys – välittäjänä Facebook
September 8th, 2010
Got scared this morning. The operated breast felt much heavier than the healthy one. Also found, in addition to the new blackmark which has been there for about two days, a sugar-bite-size vesicle filled with blood on 7 o'clock position. There is some inner bleeding somewhere in the operated area. Decided to stay resting today and see what happens. I am worried. – 8 Syys – välittäjänä Facebook
September 7th, 2010
Today - the first day when I could do my gymnastics as adviced in the hospital. I have also been able to cut my pain killers to half and I am not taking any strong pain killers at all anymore. Also completed my part of the work with the home town calendar for the next year. Happy to get it off my hands! :) – 7 Syys – välittäjänä Facebook
Feel especially blessed with friends today. Have had a few really bad days, and today, in addition to being so much better physically, heard so many good, encouraging, beautiful things from adorable friends! Reading about other breast cancer survivors and fighters, feels good I'm not alone or odd with my thoughts and feelings. – 7 Syys – välittäjänä Facebook
Feel especially blessed with friends today. Have had a few really bad days, and today, in addition to being so much better physically, heard so many good, encouraging, beautiful things from adorable friends! Reading about other breast cancer survivors and fighters, feels good I'm not alone or odd with my thoughts and feelings. – 7 Syys – välittäjänä Facebook
September 6th, 2010
Accidentally too much stretching yesterday caused all-day ache today, plus a new blackmark so I have managed to cause an extra internal bleeding in the wound area - luckily it is not so big and since it's not getting worse, it is most likely healing. – 6 Syys – välittäjänä Facebook
September 5th, 2010
Feeling tired today. Been to church, and for a walk which made my legs stiff. Not in a very good mood. – 5 Syys – välittäjänä Facebook
My body is not co-operative today. I went for a walk and my legs got stiff so that walking was really really weary. (It is part of the FMS sydrome.) I am feeling depressed about the situation... anyway, the stitches were removed from the armpit on Friday and the nurse said it looked fine. I have been looking at the wounds daily and they seem to look different each day, but no doubt the healing process is going on. Putting clothes on is difficult because I cannot stretch my right arm as much as I should without pain, and if I stretch it with pain like I did yesterday, I will have the pain there all day. I am doing the exercises I was advised to do when I was in the hospital, it is to remain the mobility of the shoulder and to stretch the muscles and remain a good posture (mmm.... gain a good posture in my case LOL). I try to do the household work I can do but also there, days vary and sometimes I can put dishes in the dish washer, sometimes I have to leave them in the sink. I hate to think that I should do any work at all but I have to, at least I have to accomplish the calendar and the home town magazine... I feel stressed when I think about people being impatient about them...
I am happy of my family. It is giving me time and space to recover, and their love and presence, and support and encouragement. So it is with you too. It is good to have friends too, on- and offline.
Church day today. The preach was about gratitude. Last time I was there, it was about healing. It feels like tailor-made for me each time. :)
Something I have struggled with and where I got a solution lately: I have always thought that forgiving means forgetting too. I have first recently realized that they are two different things. Forgiving is something you do with a decision, and it has nothing to do with memory or feelings. It is something you can reason about. Forgetting on the other hand is a memory thing and you cannot reason with memory, it has its own ways of functioning. Think that I had to be 52 to realize this!
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Mo Yee Ho God is wonderful, He is healing and we, remaining a heart of gratitude.
September 5 at 5:19pm · UnlikeLike · 1 personLoading... ·
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Ugri Fenno Amen! - I wish you will enjoy your trip tp the fullest, I am so happy for you!
September 5 at 5:28pm · LikeUnlike ·
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Mohamed Elsheikh Hassan Al Hamdu li ALLAH ( praise to the Almighty God ) for your safety
September 6 at 10:49am · LikeUnlike ·
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Ugri Fenno Thank you Mohamed! God bless you!
September 6 at 7:27pm · LikeUnlike ·
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My body is not co-operative today. I went for a walk and my legs got stiff so that walking was really really weary. (It is part of the FMS sydrome.) I am feeling depressed about the situation... anyway, the stitches were removed from the armpit on Friday and the nurse said it looked fine. I have been looking at the wounds daily and they seem to look different each day, but no doubt the healing process is going on. Putting clothes on is difficult because I cannot stretch my right arm as much as I should without pain, and if I stretch it with pain like I did yesterday, I will have the pain there all day. I am doing the exercises I was advised to do when I was in the hospital, it is to remain the mobility of the shoulder and to stretch the muscles and remain a good posture (mmm.... gain a good posture in my case LOL). I try to do the household work I can do but also there, days vary and sometimes I can put dishes in the dish washer, sometimes I have to leave them in the sink. I hate to think that I should do any work at all but I have to, at least I have to accomplish the calendar and the home town magazine... I feel stressed when I think about people being impatient about them...
I am happy of my family. It is giving me time and space to recover, and their love and presence, and support and encouragement. So it is with you too. It is good to have friends too, on- and offline.
Church day today. The preach was about gratitude. Last time I was there, it was about healing. It feels like tailor-made for me each time. :)
Something I have struggled with and where I got a solution lately: I have always thought that forgiving means forgetting too. I have first recently realized that they are two different things. Forgiving is something you do with a decision, and it has nothing to do with memory or feelings. It is something you can reason about. Forgetting on the other hand is a memory thing and you cannot reason with memory, it has its own ways of functioning. Think that I had to be 52 to realize this!
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Mo Yee Ho God is wonderful, He is healing and we, remaining a heart of gratitude.
September 5 at 5:19pm · UnlikeLike · 1 personLoading... ·
o
Ugri Fenno Amen! - I wish you will enjoy your trip tp the fullest, I am so happy for you!
September 5 at 5:28pm · LikeUnlike ·
o
Mohamed Elsheikh Hassan Al Hamdu li ALLAH ( praise to the Almighty God ) for your safety
September 6 at 10:49am · LikeUnlike ·
o
Ugri Fenno Thank you Mohamed! God bless you!
September 6 at 7:27pm · LikeUnlike ·
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September 2nd, 2010
Took away the tape from the first surgical wound. Had not seen the scar before, it looked quite neat. Will have the stitches removed from the other one tomorrow. I am getting annoyed on them - it is really impractical and irritating to have stitches in the armpit! Happy to get them off! – 2 Syys – välittäjänä
I am enjoying these fresh sunny autumn days, they feel wonderful! I am going out for a walk today, and also to the pharmacy - a dull thing to do but needs more medication, blah - on the other hand, glad there is medication when you need it! :) – 2 Syys – välittäjänä Facebook
I told the doctor I have asthma and therefore cannot take all pain killers. Now I have just noticed - as this coughing and shortness of breath goes really wild - that I have BOTH a pain killer AND antibiotics that DON'T go with asthma. Stopped taking the pain killer and tomorrow morning I will have the last pill of antibiotics and then I hope my breathing probs will be over! – 2 Syys – välittäjänä Facebook
I am enjoying these fresh sunny autumn days, they feel wonderful! I am going out for a walk today, and also to the pharmacy - a dull thing to do but needs more medication, blah - on the other hand, glad there is medication when you need it! :) – 2 Syys – välittäjänä Facebook
I told the doctor I have asthma and therefore cannot take all pain killers. Now I have just noticed - as this coughing and shortness of breath goes really wild - that I have BOTH a pain killer AND antibiotics that DON'T go with asthma. Stopped taking the pain killer and tomorrow morning I will have the last pill of antibiotics and then I hope my breathing probs will be over! – 2 Syys – välittäjänä Facebook
August 31st, 2010
The scar in the armpit is hurting. Pain killers make me tired. Soon it is time to take the obligatory nap again... – 31 Elo – välittäjänä Facebook
Sleeping at the keyboard... – 31 Elo – välittäjänä Facebook
Hello folks... I am sorry I am not online, "there", so much... I could not imagine this kind of tiredness possible! Everything is as it should be because I was told in the hospital it would be like this... I am okey, just tired... exhausted... I will love to see you when I get less tired! Take care! – 31 Elo – Kommentti
Sleeping at the keyboard... – 31 Elo – välittäjänä Facebook
Hello folks... I am sorry I am not online, "there", so much... I could not imagine this kind of tiredness possible! Everything is as it should be because I was told in the hospital it would be like this... I am okey, just tired... exhausted... I will love to see you when I get less tired! Take care! – 31 Elo – Kommentti
August 29th, 2010
The operation was done and everything went fine. The tumor got out together with 2 cm marginal and the x-ray dept and the surgeon agreed that it had come out completely. Now I have three weeks before the next check, during wihich the scars should heal. It looks good for both of them - the other one was made in the armpit to pick out a few lymph nodes to check if the cancer had spread. Nothing was found - they made a radio-isotopic scan before the operation, and a colour scan during the operation, and nothing was seen in the microscope either during the operation - now it all goes to patological research to study the matter more closely. I will hear then... if there is something found, the next opereation will be very soon, but it is not likely that they find something. Anyway, I don't think anything about it before I hear the results. To begin with, I have 6 weeks sick leave. It is for recovering from the operation - if there is some radsial thereapy to follow like there most likely is, it should mean prolonged sick leave. But we'll see then.
I feel fine, I have felt fine all the time. I have enough pain killers so I don't feel much pain in the scars which is a good thing, and they both seem to heal nicely so far. But I am really, really exhausted. I cannot understand it but there was some specialist in the hospital who came to see me and tell me what would follow and she said the operation would be followed by an incredible tiredness. So things are as they should be, I suppose :D!
I am mostly lying in bed and reading, and taking a nap in between - very often. I don't sleep well at nights, not yet, but I suppose it will settle with time too. I will write more details later.
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Mo Yee Ho feel good soon, wish you a speedy recovery, and good news follows.
August 30 at 2:11pm · ·
I feel fine, I have felt fine all the time. I have enough pain killers so I don't feel much pain in the scars which is a good thing, and they both seem to heal nicely so far. But I am really, really exhausted. I cannot understand it but there was some specialist in the hospital who came to see me and tell me what would follow and she said the operation would be followed by an incredible tiredness. So things are as they should be, I suppose :D!
I am mostly lying in bed and reading, and taking a nap in between - very often. I don't sleep well at nights, not yet, but I suppose it will settle with time too. I will write more details later.
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Mo Yee Ho likes this.
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Mo Yee Ho feel good soon, wish you a speedy recovery, and good news follows.
August 30 at 2:11pm · ·
August 28th, 2010
Back from hospital (already yesterday) and feeling remarkably better. So far no other tumors found. The existing one has been removed with 2 cm marginal, means that it has come out completely. The surgeon was very skillful! All went as planned and everything was just fine. Sick leave for 6 weeks. Thank you all - it's not over yet but at least this surgery is over and all went really fine! – 28 Elo – välittäjänä Facebook
August 25, 2010
I'll be in the hospital tomorrow morning at 6.45 a.m., see he surgeon and receive the radioactive injection at 7.00, have the tumor marked with steel thread in the x-ray dept at 7.30, and then I'll be the 2nd to be operated that day, i.e. it will be done before noon. I'm healthy, rash is not too bad - just excited. Thanks for support, pls keep praying! :) – 25 Elo – välittäjänä Facebook
Rash got worse, could it be mental? I hope the tunor will be removed tomorrow as planned anyway.
Rash got worse, could it be mental? I hope the tunor will be removed tomorrow as planned anyway.
Sunday, August 22, 2010
Surgery
My breast cancer surgery will trake place on Thursaday the 26th of August, 2010. Three days to go.... The nurse will call me from the hospital the day before to give the last instructions. I have that minimal tumor in my right breast, quite deep in there, unable to feel by hand but visible in mammography and ultrasound scan. It has most likely not spread anywhere, the biopsed proofs did not contain any cells that would have been hinting on a spreading kind of cancer. So they will not remove the entire breast unless they find some more of those minimal tumors which is not likely but which we actually know for sure only after the surgery. They will not empty the armpit either, it would cause swelling and pain in the arm later. Instead, before the operation, they will inject blue color and radioactive matter to the tumor so that if it has sent cells to spread, they will catch them and see that it has happened, and will be able to remove those lymph nodes from the armpit that contain cancer cells. Most likely none of them contain those cells so they will not be removed. The blue color will also "paint" all the lymph nodes in the armpit so they can, during the operation, search for those contaminated lymph nodes with something that reacts with that radioactive matter that they will inject to the cell before the surgery (to make the first inspections already then). It delights me somehow that they are researching it all so closely. I did not know actually that breast cancer surgery is in fact a series of acts and not just the surgery. They can actually make breast reconstruction too at the same time if they consider it necessary but I won't be needing it - at least I think so. And anyway, lots of these reconstructions are done afterwards.
Hmmm.... what else? Oh. That minimal tumor is so small that they think the surgeon will not necessarily find it, so an x-ray specialist will actually mark it before the surgery by putting a metal thread through the breast tissue up to the tumor, so that by following that metal thread, the surgeon will actually find the tumor she is about to remove. It sounds a bit scary but I have been told it won't hurt more than a normal injection so okey - I think I can manage.The surgery will be made in Centarl Hospital of Vaasa, by a surgeon who has specialized in breast surgery.
They have estimated that all in all the surgery will take 2,5 hours. I will be let home in 1 - 2 days after the surgery, depending on how I recover from the operation and the anesthesia. I hope I will recover as soon as possible, and as well as possible, that I won't get fuzzy or aggressive like my mother did, and that I will be my old self after that and not someone else like happened to a man I know - he has never been back to himself after he had anesthesia. It's scary.
My breast - the one with the tumor - has actually been hurting ever since the biopsy.
I had eczema in the armpit, from wearing underwired bra and sweating in the hot weather. The surgeon said I have to get rid of that eczema before the surgery, it cannot be operated if that rash is still there. Now I have not been wearing bra at all, and I have been washing the area every time I sweat, and applied cream on it, and I have mainly used light-colored loose shirts and changed a clean one often... I mean I have been as careful as possible. Right now I don't have the eczema anymore and I hope to maintain that status till the surgery. I also hope to stay healthy and not get any infection before the surgery...So much to be worried of!
Hmmm.... what else? Oh. That minimal tumor is so small that they think the surgeon will not necessarily find it, so an x-ray specialist will actually mark it before the surgery by putting a metal thread through the breast tissue up to the tumor, so that by following that metal thread, the surgeon will actually find the tumor she is about to remove. It sounds a bit scary but I have been told it won't hurt more than a normal injection so okey - I think I can manage.The surgery will be made in Centarl Hospital of Vaasa, by a surgeon who has specialized in breast surgery.
They have estimated that all in all the surgery will take 2,5 hours. I will be let home in 1 - 2 days after the surgery, depending on how I recover from the operation and the anesthesia. I hope I will recover as soon as possible, and as well as possible, that I won't get fuzzy or aggressive like my mother did, and that I will be my old self after that and not someone else like happened to a man I know - he has never been back to himself after he had anesthesia. It's scary.
My breast - the one with the tumor - has actually been hurting ever since the biopsy.
I had eczema in the armpit, from wearing underwired bra and sweating in the hot weather. The surgeon said I have to get rid of that eczema before the surgery, it cannot be operated if that rash is still there. Now I have not been wearing bra at all, and I have been washing the area every time I sweat, and applied cream on it, and I have mainly used light-colored loose shirts and changed a clean one often... I mean I have been as careful as possible. Right now I don't have the eczema anymore and I hope to maintain that status till the surgery. I also hope to stay healthy and not get any infection before the surgery...So much to be worried of!
Monday, August 16, 2010
All previous posts from my Windows Live site (ask for an invitation!), starting from diadnosis, on the bottom!
These blog posts have all been published on my Windows Live and / or Facebook sites. Please ask me for an invitation! Their protection is high so probably you cannot find them with any searches.
26. July
Off with bad vibes! Today is a good day!
Cosmic loneliness has been replaced with cosmic love. I have not often felt this good and this strong and this wonderful, and I have not often loved myself and people around me this much. It is good to realize that life is not going on forever, and it feels good to live at this moment, enjoying what I have and loving those I have. I am constantly happy and sparkling and I enjoy each moment of it - mornings excluded ! (Sorry, my heart... my beloved husband and my wonderful kids! I love you anyway!)
My prayer last night was to be freed emotionally and mentally from a very destructive person that has been giving bad vibes in my life for far too long. Maybe this is temporary, maybe this is even part of a false euphory, but today I feel that the agony after this person is gone. Praise the Lord, I am freed from yet another burden. Honestly, I think that although cancer does not have a cause and it is nobody's fault - this process with that person who cannot be mentally normal has been so violent to my self that I wouldn't be surprised if it would have harmed me so much that my body has developed cancer.
Funny as it may seem, cancer has healed more than it has disturbed so far. But I am just in the beginning with it, a lot of different things, feelings and ups and downs are sure to come. I will take them as they come. Now I am here. Today is a good day.11:36 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointi22. heinäkuuta
It is not about me - it is about them!
I read something this morning that felt important when I try to understand what we have been discussing in Twitter and what I have been going through several times when being ill - and what I may prepare myself to even more now when what I have is cancer.
It is that when people reject me because of my illness, it is not because of me that they do it. It is not my fault. It is not that I have done something wrong. It is because of themselves, their background, their history, their own attitudes. They have the difficulty in themselves, not in me. They may even blame me but the real difficulty that they are feeling is their own. It is about their unability to deal with illness in other people, or illness in me, or illness in general. It may even be the fear of loss that makes people take distance, or break a friendship. And I have to understand this and free myself from feeling guilty when this happens. It is not easy either but it is good to know it is so... good to be reminded of it.
Of course illness brings up the more unpleasant side of myself too. Then I can also hope for understanding from my near ones - and I can expect not to be pushed away.
One can always hope for more mature friends in the future.
10:05 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointi21. heinäkuuta
Day 6, Wednesday
Managed doing at work what I had planned to - scheduling. Also managed writing a few postcards to my friends, and one letter. Talked to my employee, got him to a better mood. There was vivid discussion in Twitter about friends, friendships, disabilities and illnesses. I participated actively. STRANGE how complete STRANGERS get good friends, for example in Twitter. I'd never have thought of it before.
Went to fill in diesel to the car after work. Paid, and then realized the car was wrong way.... had to turn it, and the next client was already waiting in the automat... things like this happen to me now all the time - normally they do not happen, I automatically drive right way... It just tells how crowded my mind is, after the cancer diagnosis.
Have been chatting with Sosin tonight, he is very nice. I want to keep friendships reciprocal as long as possible - perhaps there will be a time when I will mostly be the receiving part if I get very weak but it is not here yet. As long as I can, I want to pay attention to my friends too, not just myself.
I have not perhaps yet said but I am really really happy of my husband. He is so wonderful to me, so loving, so caring and consideratee. I could not think of anyone better than he is.
21:13 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointiDay 5, Tuesday
Finally had time and energy to look for another theme here and found a breast cancer pink one. Wonder if I am going to hate pink, or love it, when time goes by?
Mo Yee gave me a very useful link to a blog written by a pastor's wife whom she knows, the writer is receiving chemotherapy. I am so grateful.
It has been a bit busy online, I have received a lot of support and encouraging and I think this was the busiest day in that sense. perhaps not surprisingly, most of it comes from my Twitter mates.
I went shopping after a pretty useless day at work - which was good for me though, I loved to see all those people and even that is somehow nice - we are only a handful there right now, most are on holiday.
Two years ago a work mate of mine lost all her goods in her deep freezer when it got broken and everything melted. I then brought to her from ours, we had all our deep freezers full, and I then forgot it completely. Today, she came with a beautiful hand-made rose-shaped candle and a lovely glass vase and obviously still thankful. I'd not have needed anything but I think that it was God's way to tell me that He has not forgotten me, good things happen, and maybe something that I have done will be rewarded like this - I don't mean that I am expecting for rewards but - you know. It made me happy. I neveer thought God would forget me - I know He is taking care of me and as He has found it good and appropriate to put me in this situation, He will also walk with me, even carry me if need be - He will prepare my steps ahead of me, I am completely safe.
I went shopping after work, shopping things pink... just felt so. Psyching myself maybe. AND found a matching bracelet for my TURQUOISE jewelry, LOL!
Was quite tired when arrived at home at about 7:30 p.m. Had left at 8 a.m.
Studied the Romans again, 1st and 2nd chapter. Caught that we are all equally sinners, no one is better than the other, and it felt a relief - I don't have to judge anyone. Still it said again that there is such a thing as absolute evil. It got clear to me that absolute evil and absolute good exist, and they are by no means relative. There is nothing to explain away absolute evil. If something is wrong, it is wrong, no matter whether you do it for which reasons ever. I am thinking of the invitation / visa dilemma (still, although I think that man must be in Germany by his girl friend already!). Writing an invitation would have been wrong even for a friend, even for good reasons. AND if I had served him by writing that, I had caused a lot of evil to my family. I am not allowed to do that. More than so, I am not allowed to do things that are wrong. All kind of blackmailing and blurring of these concepts, appealing to friendship or whatever, is against God's will.
Then I got frightened. What if he will start soime more online harrassing than what has already happened? Starts publishing my mails, or creates nasty accounts for me - he has done it for others, he can do it for me too. Again I got God's word: not one hair from your head will be cut without my allowing it. ANd on the other hand - what do I care about his possible future harrassment? It does not proof anything about me but about him - what kind of a person he is. I don't even believe he will do anythhing like that - there might be just some sort of respect anyway as he said himself, sometimes.
Had fibromyalgia aches and pains in legs and feet during the night, ate a lot extra, slept 4 hrs and could not use CPAP.
Day 4, Monday, Back to Work
R writes on his Live profile:
"Strange how firends become starngers and strangers become near friends" (not quite his typing but I am writing it as I can, he types differently - strengers...). He has not been in touch for ages so I replied - he once said I'd be his best friend lol - that it is just the choices he makes. We were internet friends for quite many years until he started saying things to me as we quarrelled, like, "get well first and come back then" - is that something you say to a chronically ill person who cannot get well no matter how she tries? Is that something to say to a friend? He never apologised and I beg God will forgive him because I find it hard to do when not even regretted... I took distance but it seemed he wanted to keep in touch and I thought I knew why - he needed a false invitation to Schengen and thought I would be silly enough to write it. As he asked, I refused but I was also very angry, especially as it felt that when I was checking things he did not want me to do that. He has innumerous friends and family in EU / Schengen and no one of these wanted to write that invitation, so he must have known it was not harmless. He was willing to throw me, my safety, my family all in disaster for his pleasure. He had the heart to say that I was worth nothing "when it comes to real" and he never apologised that either. I have said quite a lot of things too but I apologised, and he has a big heart, he did forgive me and I appreciate it a lot, it is a brilliant gesture... still. What he writes now feels like emotional blackmailing or whatever, very unpleasant if it was addressed to me. - This just to explain why I got upset. It has at times been a good relationship, a good friendship, it has opebned my eyes and I am sure it has given a lot to him too but now we are at this stage. Sad. But it is really hard to feel I am dealing wit dishonesty.
Also otherwise it was a difficult day at work, I had really big difficulties concentrating on anything and I was in the end just wishing that the day would be over. I decided to run errands to avoid panic on a later stage of the week and so I went to the pharmacy, post office, and then to buy ice cream. I struggled really a lot to keep myself calm and act normally though I was feeling how panic was rising its head inside of me.
At home I did household chores and got pretty much done. Then I went upstairs to pay some bills online and then I collapsed. I did not find my wallet anywhere, I had obviously left it on the shop where I went for ice cream because when I paid, I had to take bonus card from one wallet, money from another, and still manage the ice cream in my hands when paying and receiving change and I thought afterwards that it must have been too much for my loaded mind which was all the time on the brink of collapsing. I was desperately looking for the wallet, Rikard helped me, and we did not find it. Then came tears and I was sobbing ... why do I have to try to do things when I cannot concentrate and keep my mind clear.... things like that... and I was crying that they could have buroied me at least with the money that could now be gobe forever... Rikard told me not to get despaired and I just said I was despaired already.... I said it had hit me that I am not in a good shape so that I could even survive an operation so I might as well be dead in a few weeks, I might die on the operation table, considering how poorly my lungs work. I was really getting hysterical about it.
All the time I have thought that I need a lot more time for studying the Bible and talking to God. I took the Bible and as Eila had reminded me of what God said to Paul who grumbled - "My grace is enough for you" - I thought I'd start reading Paul's letters,a nd took the letter to the Romans, and read the 1st chapter. I cannot say more here in Internet but if you read it - and consider what had upset me previously that day - was that an asnwer? I have to study it again, with prayer, to find out.
Venla asked me as we were watching TV when I was going to be operated. Then she surprised me by saying that she is willing to go to the hospital to negotiate about my operation time - she was worried it would take too long to get in the operation. "I am very good at negotiating", she said, and gestured how she'd threaten the officials with shotguns. We were both laughing, she is a real clown! :D I did not know she had even listened about what we had talked about my cancer. 15:35
Day 3, Sunday
Seriously wondering if I should go to the doctor because of the bleeding, but decided not to. Rikard even found for me the info about where the ER was that week-end. Postponed the decision so that I would go to see the work place nurse in case the scar would still be bleeding on Monday. Did reasonable household work, surfed quite a lot in the net to collect information, and ordered stuff like books, guides - and a pink scarf. Still managed to keep quite calm. Avoided lifting things, especially with the right hand, in order not to make the scar worse and bleeding more. Spent quite some time reading a book - I am reading Donna Leon's books about crimes in Venice - all fiction but I love the way she describes Venice, that small town, and its people, and I also love the problem-setting there and the social criticism. One book was about illegal sex workers brought to the country from abroad, i.e. human trade. So good it is taken as a subject also in fiction like this.
Went to bed early. I am seriously trying to improve my manners according to how I treat myself. I must listen to my body and give it the rest it needs so that I can go on with life. I am sure I will need all the strength I have in the coming days. It was said on one of the cancer patient sites that I was reading that "You are from now on the most important person in your life." At least on Sunday I believed it and went to bed as early as possible.
Day 2, Saturday
Did not go to work for a vernissage. There were three other people working in there for us, I was not needed and the place - iron mill museum area - is not good for my asthma. Instead, went to the market with Rikard and the girls. Could walk around the market square and all the side streets where there was selling. Felt well except that the breast hurt and the scar was bleeding although I had been told that it would not bleed. It worried me to some extend because I had been told to consult a doctor in case it would start bleeding and I didn't. The day before, I got flowers from Rikard - PINK roses - and he was very worried. It was a very warm-hearted gesture from him and it felt really good, as well as his care too. Rikard and Venla went indoors after a while, I went on searhing with Magdalena and we enjoyed the heat. I enjoyed the crowds too, it felt good to be among other people. Before they went indoors, we had pancakes and juice. I bought several handmade, wooden items for the kitchen, bakery, summer "jewelry" (turquoise which I love, I found a matching necklace for my earrings.) I did not forget the diagnose but I could push it back. I did not weant to think about it. In the afternoon I spent most of the time studying breast cancer and cancer associations in the Internet. Perhaps it was then that I wrote the first notes about my breast cancer on my web pages too. I decided not to keep it secret. I also felt it was better to restrict talking about it on sites where someone would perhaps not like to read about it, so I opened two new sites, FB and Windows Live, to go on writing. I need a diary and a place to vent - and perhaps, if someone wants to know about how things are, it can be found here and I am not throwing things into anyone's face on my regular pages.
July 19th 2010
Diagnosed - Diagnoosi
Pinkkiä fonttia ei ole, joten tämä saa kelvata. Viime torstaina töissä salainen puhelinnumeroni rupesi soimaan. Vastasin. Puhelu tuli Vaasan Mehiläisestä, yksityiseltä lääkäriasemalta, jonne mammografiakuvani olivat menneet seulottavaksi. Jotain oli jäänyt seulaan, minut haluttiin lisätutkimuksiin seuraavaksi päiväksi. Kaikki kiireet jäivät, kirjoitin ajan kalenteriini ja menin Eilan syntymäpäiville. Tuntui siltä että piti nähdä ihmisiä, olla ihmisten keskellä. Eila täytti 59 vuotta. Oli 15.7.2010.
There is no pink font so this must do. Last Thursday at work my phone started ringing and I answered. It was from Mehiläinen, Vaasa, a private hospital where my mammography xrays had been sent to be researched. Something had been found, and they wanted me to come for extra scans and research the very next day. I made a notre in my digital calendar, all my business was wiped away. I ledft for Eila's birthday. I felt I wanted to see people, be among living creatures. Eila celebrated her 59th birthday. It was July 15th, 2010.
Amanuenssi soitteli ja lähetteli tekstiviestejä puoli kahteen saakka yöllä. Aamulla hoidin työasioita, puolilta päivin lähdin Vaasaan. Oikeasta rinnasta otettiin suurennoskuvia. Lääkäri tuli tekemään ultraäänitutkimusta. Sekä kuvissa että ultrassa näkyi noin 5mm x 8 mm kokoinen tumma kohta, jota oli mahdoton tuntea tunnustelemalla. Puudutettiin, otettiin kaksi karkeaneulanäytettä. Itse neulalla sohiminen ei sattunut, mutta näytteenotto sattui kyllä. Minulle kerrottiin, että näyte menee Tampereen yliopistolliseen sairaalaan patologin tutkittavaksi ja lopuulisen vastauksen saaminen kestää 5 - 7 työpäivää. Lääkäri piti syöpädiagnoosia varmana. Sanoi soittavansa minulle kun vastaus tulee, ja lähettävänsä sitten asiakirjat sähköisesti Vaasan keskussairaalaan, jolloin ne ovat perillä saman tien, ja leikkaukseen pitäisi kuulema päästä pian. Hoitaja laastaroi biopsiakohdan. Lähdin kipuineni menemään. Pelkäsin autolla ajoa.
The specialist from the museum called qand sent sms:s till 1:30 a.m. In the morning I organized some work-related things, at noon I heasded to Vaasa. The nurse took magnified x-rays from teh right breast. A doctor made an ultra sound research. Both showed an approximately 5 mm x 8 mm sized dark spot, which was impossible to feel with hands and fingers. Two biopsies wewre taken. Intruding the breast with the nail did not hurt, it was anesthetized, but taking the proof bits did hurt. I was told that the samples would be sent to Tampere University hospital and that the results would come within 5 - 7 working days. The doctor talked right out about cancer, he considered it as a confirmed thing already. He said he'd call me immediately when he goets the results, and they willt hen immediately be passed to the hospital which will operate me - which should also happen some time soon, according tot he doctor. The nurse plastered the biopsy hole. I went out with my hurting breast. I was frightened to drive a car.
26. July
Off with bad vibes! Today is a good day!
Cosmic loneliness has been replaced with cosmic love. I have not often felt this good and this strong and this wonderful, and I have not often loved myself and people around me this much. It is good to realize that life is not going on forever, and it feels good to live at this moment, enjoying what I have and loving those I have. I am constantly happy and sparkling and I enjoy each moment of it - mornings excluded ! (Sorry, my heart... my beloved husband and my wonderful kids! I love you anyway!)
My prayer last night was to be freed emotionally and mentally from a very destructive person that has been giving bad vibes in my life for far too long. Maybe this is temporary, maybe this is even part of a false euphory, but today I feel that the agony after this person is gone. Praise the Lord, I am freed from yet another burden. Honestly, I think that although cancer does not have a cause and it is nobody's fault - this process with that person who cannot be mentally normal has been so violent to my self that I wouldn't be surprised if it would have harmed me so much that my body has developed cancer.
Funny as it may seem, cancer has healed more than it has disturbed so far. But I am just in the beginning with it, a lot of different things, feelings and ups and downs are sure to come. I will take them as they come. Now I am here. Today is a good day.11:36 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointi22. heinäkuuta
It is not about me - it is about them!
I read something this morning that felt important when I try to understand what we have been discussing in Twitter and what I have been going through several times when being ill - and what I may prepare myself to even more now when what I have is cancer.
It is that when people reject me because of my illness, it is not because of me that they do it. It is not my fault. It is not that I have done something wrong. It is because of themselves, their background, their history, their own attitudes. They have the difficulty in themselves, not in me. They may even blame me but the real difficulty that they are feeling is their own. It is about their unability to deal with illness in other people, or illness in me, or illness in general. It may even be the fear of loss that makes people take distance, or break a friendship. And I have to understand this and free myself from feeling guilty when this happens. It is not easy either but it is good to know it is so... good to be reminded of it.
Of course illness brings up the more unpleasant side of myself too. Then I can also hope for understanding from my near ones - and I can expect not to be pushed away.
One can always hope for more mature friends in the future.
10:05 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointi21. heinäkuuta
Day 6, Wednesday
Managed doing at work what I had planned to - scheduling. Also managed writing a few postcards to my friends, and one letter. Talked to my employee, got him to a better mood. There was vivid discussion in Twitter about friends, friendships, disabilities and illnesses. I participated actively. STRANGE how complete STRANGERS get good friends, for example in Twitter. I'd never have thought of it before.
Went to fill in diesel to the car after work. Paid, and then realized the car was wrong way.... had to turn it, and the next client was already waiting in the automat... things like this happen to me now all the time - normally they do not happen, I automatically drive right way... It just tells how crowded my mind is, after the cancer diagnosis.
Have been chatting with Sosin tonight, he is very nice. I want to keep friendships reciprocal as long as possible - perhaps there will be a time when I will mostly be the receiving part if I get very weak but it is not here yet. As long as I can, I want to pay attention to my friends too, not just myself.
I have not perhaps yet said but I am really really happy of my husband. He is so wonderful to me, so loving, so caring and consideratee. I could not think of anyone better than he is.
21:13 | Lisää kommentti | Pysyvä linkki | Lisää se blogiin | Terveys ja hyvinvointiDay 5, Tuesday
Finally had time and energy to look for another theme here and found a breast cancer pink one. Wonder if I am going to hate pink, or love it, when time goes by?
Mo Yee gave me a very useful link to a blog written by a pastor's wife whom she knows, the writer is receiving chemotherapy. I am so grateful.
It has been a bit busy online, I have received a lot of support and encouraging and I think this was the busiest day in that sense. perhaps not surprisingly, most of it comes from my Twitter mates.
I went shopping after a pretty useless day at work - which was good for me though, I loved to see all those people and even that is somehow nice - we are only a handful there right now, most are on holiday.
Two years ago a work mate of mine lost all her goods in her deep freezer when it got broken and everything melted. I then brought to her from ours, we had all our deep freezers full, and I then forgot it completely. Today, she came with a beautiful hand-made rose-shaped candle and a lovely glass vase and obviously still thankful. I'd not have needed anything but I think that it was God's way to tell me that He has not forgotten me, good things happen, and maybe something that I have done will be rewarded like this - I don't mean that I am expecting for rewards but - you know. It made me happy. I neveer thought God would forget me - I know He is taking care of me and as He has found it good and appropriate to put me in this situation, He will also walk with me, even carry me if need be - He will prepare my steps ahead of me, I am completely safe.
I went shopping after work, shopping things pink... just felt so. Psyching myself maybe. AND found a matching bracelet for my TURQUOISE jewelry, LOL!
Was quite tired when arrived at home at about 7:30 p.m. Had left at 8 a.m.
Studied the Romans again, 1st and 2nd chapter. Caught that we are all equally sinners, no one is better than the other, and it felt a relief - I don't have to judge anyone. Still it said again that there is such a thing as absolute evil. It got clear to me that absolute evil and absolute good exist, and they are by no means relative. There is nothing to explain away absolute evil. If something is wrong, it is wrong, no matter whether you do it for which reasons ever. I am thinking of the invitation / visa dilemma (still, although I think that man must be in Germany by his girl friend already!). Writing an invitation would have been wrong even for a friend, even for good reasons. AND if I had served him by writing that, I had caused a lot of evil to my family. I am not allowed to do that. More than so, I am not allowed to do things that are wrong. All kind of blackmailing and blurring of these concepts, appealing to friendship or whatever, is against God's will.
Then I got frightened. What if he will start soime more online harrassing than what has already happened? Starts publishing my mails, or creates nasty accounts for me - he has done it for others, he can do it for me too. Again I got God's word: not one hair from your head will be cut without my allowing it. ANd on the other hand - what do I care about his possible future harrassment? It does not proof anything about me but about him - what kind of a person he is. I don't even believe he will do anythhing like that - there might be just some sort of respect anyway as he said himself, sometimes.
Had fibromyalgia aches and pains in legs and feet during the night, ate a lot extra, slept 4 hrs and could not use CPAP.
Day 4, Monday, Back to Work
R writes on his Live profile:
"Strange how firends become starngers and strangers become near friends" (not quite his typing but I am writing it as I can, he types differently - strengers...). He has not been in touch for ages so I replied - he once said I'd be his best friend lol - that it is just the choices he makes. We were internet friends for quite many years until he started saying things to me as we quarrelled, like, "get well first and come back then" - is that something you say to a chronically ill person who cannot get well no matter how she tries? Is that something to say to a friend? He never apologised and I beg God will forgive him because I find it hard to do when not even regretted... I took distance but it seemed he wanted to keep in touch and I thought I knew why - he needed a false invitation to Schengen and thought I would be silly enough to write it. As he asked, I refused but I was also very angry, especially as it felt that when I was checking things he did not want me to do that. He has innumerous friends and family in EU / Schengen and no one of these wanted to write that invitation, so he must have known it was not harmless. He was willing to throw me, my safety, my family all in disaster for his pleasure. He had the heart to say that I was worth nothing "when it comes to real" and he never apologised that either. I have said quite a lot of things too but I apologised, and he has a big heart, he did forgive me and I appreciate it a lot, it is a brilliant gesture... still. What he writes now feels like emotional blackmailing or whatever, very unpleasant if it was addressed to me. - This just to explain why I got upset. It has at times been a good relationship, a good friendship, it has opebned my eyes and I am sure it has given a lot to him too but now we are at this stage. Sad. But it is really hard to feel I am dealing wit dishonesty.
Also otherwise it was a difficult day at work, I had really big difficulties concentrating on anything and I was in the end just wishing that the day would be over. I decided to run errands to avoid panic on a later stage of the week and so I went to the pharmacy, post office, and then to buy ice cream. I struggled really a lot to keep myself calm and act normally though I was feeling how panic was rising its head inside of me.
At home I did household chores and got pretty much done. Then I went upstairs to pay some bills online and then I collapsed. I did not find my wallet anywhere, I had obviously left it on the shop where I went for ice cream because when I paid, I had to take bonus card from one wallet, money from another, and still manage the ice cream in my hands when paying and receiving change and I thought afterwards that it must have been too much for my loaded mind which was all the time on the brink of collapsing. I was desperately looking for the wallet, Rikard helped me, and we did not find it. Then came tears and I was sobbing ... why do I have to try to do things when I cannot concentrate and keep my mind clear.... things like that... and I was crying that they could have buroied me at least with the money that could now be gobe forever... Rikard told me not to get despaired and I just said I was despaired already.... I said it had hit me that I am not in a good shape so that I could even survive an operation so I might as well be dead in a few weeks, I might die on the operation table, considering how poorly my lungs work. I was really getting hysterical about it.
All the time I have thought that I need a lot more time for studying the Bible and talking to God. I took the Bible and as Eila had reminded me of what God said to Paul who grumbled - "My grace is enough for you" - I thought I'd start reading Paul's letters,a nd took the letter to the Romans, and read the 1st chapter. I cannot say more here in Internet but if you read it - and consider what had upset me previously that day - was that an asnwer? I have to study it again, with prayer, to find out.
Venla asked me as we were watching TV when I was going to be operated. Then she surprised me by saying that she is willing to go to the hospital to negotiate about my operation time - she was worried it would take too long to get in the operation. "I am very good at negotiating", she said, and gestured how she'd threaten the officials with shotguns. We were both laughing, she is a real clown! :D I did not know she had even listened about what we had talked about my cancer. 15:35
Day 3, Sunday
Seriously wondering if I should go to the doctor because of the bleeding, but decided not to. Rikard even found for me the info about where the ER was that week-end. Postponed the decision so that I would go to see the work place nurse in case the scar would still be bleeding on Monday. Did reasonable household work, surfed quite a lot in the net to collect information, and ordered stuff like books, guides - and a pink scarf. Still managed to keep quite calm. Avoided lifting things, especially with the right hand, in order not to make the scar worse and bleeding more. Spent quite some time reading a book - I am reading Donna Leon's books about crimes in Venice - all fiction but I love the way she describes Venice, that small town, and its people, and I also love the problem-setting there and the social criticism. One book was about illegal sex workers brought to the country from abroad, i.e. human trade. So good it is taken as a subject also in fiction like this.
Went to bed early. I am seriously trying to improve my manners according to how I treat myself. I must listen to my body and give it the rest it needs so that I can go on with life. I am sure I will need all the strength I have in the coming days. It was said on one of the cancer patient sites that I was reading that "You are from now on the most important person in your life." At least on Sunday I believed it and went to bed as early as possible.
Day 2, Saturday
Did not go to work for a vernissage. There were three other people working in there for us, I was not needed and the place - iron mill museum area - is not good for my asthma. Instead, went to the market with Rikard and the girls. Could walk around the market square and all the side streets where there was selling. Felt well except that the breast hurt and the scar was bleeding although I had been told that it would not bleed. It worried me to some extend because I had been told to consult a doctor in case it would start bleeding and I didn't. The day before, I got flowers from Rikard - PINK roses - and he was very worried. It was a very warm-hearted gesture from him and it felt really good, as well as his care too. Rikard and Venla went indoors after a while, I went on searhing with Magdalena and we enjoyed the heat. I enjoyed the crowds too, it felt good to be among other people. Before they went indoors, we had pancakes and juice. I bought several handmade, wooden items for the kitchen, bakery, summer "jewelry" (turquoise which I love, I found a matching necklace for my earrings.) I did not forget the diagnose but I could push it back. I did not weant to think about it. In the afternoon I spent most of the time studying breast cancer and cancer associations in the Internet. Perhaps it was then that I wrote the first notes about my breast cancer on my web pages too. I decided not to keep it secret. I also felt it was better to restrict talking about it on sites where someone would perhaps not like to read about it, so I opened two new sites, FB and Windows Live, to go on writing. I need a diary and a place to vent - and perhaps, if someone wants to know about how things are, it can be found here and I am not throwing things into anyone's face on my regular pages.
July 19th 2010
Diagnosed - Diagnoosi
Pinkkiä fonttia ei ole, joten tämä saa kelvata. Viime torstaina töissä salainen puhelinnumeroni rupesi soimaan. Vastasin. Puhelu tuli Vaasan Mehiläisestä, yksityiseltä lääkäriasemalta, jonne mammografiakuvani olivat menneet seulottavaksi. Jotain oli jäänyt seulaan, minut haluttiin lisätutkimuksiin seuraavaksi päiväksi. Kaikki kiireet jäivät, kirjoitin ajan kalenteriini ja menin Eilan syntymäpäiville. Tuntui siltä että piti nähdä ihmisiä, olla ihmisten keskellä. Eila täytti 59 vuotta. Oli 15.7.2010.
There is no pink font so this must do. Last Thursday at work my phone started ringing and I answered. It was from Mehiläinen, Vaasa, a private hospital where my mammography xrays had been sent to be researched. Something had been found, and they wanted me to come for extra scans and research the very next day. I made a notre in my digital calendar, all my business was wiped away. I ledft for Eila's birthday. I felt I wanted to see people, be among living creatures. Eila celebrated her 59th birthday. It was July 15th, 2010.
Amanuenssi soitteli ja lähetteli tekstiviestejä puoli kahteen saakka yöllä. Aamulla hoidin työasioita, puolilta päivin lähdin Vaasaan. Oikeasta rinnasta otettiin suurennoskuvia. Lääkäri tuli tekemään ultraäänitutkimusta. Sekä kuvissa että ultrassa näkyi noin 5mm x 8 mm kokoinen tumma kohta, jota oli mahdoton tuntea tunnustelemalla. Puudutettiin, otettiin kaksi karkeaneulanäytettä. Itse neulalla sohiminen ei sattunut, mutta näytteenotto sattui kyllä. Minulle kerrottiin, että näyte menee Tampereen yliopistolliseen sairaalaan patologin tutkittavaksi ja lopuulisen vastauksen saaminen kestää 5 - 7 työpäivää. Lääkäri piti syöpädiagnoosia varmana. Sanoi soittavansa minulle kun vastaus tulee, ja lähettävänsä sitten asiakirjat sähköisesti Vaasan keskussairaalaan, jolloin ne ovat perillä saman tien, ja leikkaukseen pitäisi kuulema päästä pian. Hoitaja laastaroi biopsiakohdan. Lähdin kipuineni menemään. Pelkäsin autolla ajoa.
The specialist from the museum called qand sent sms:s till 1:30 a.m. In the morning I organized some work-related things, at noon I heasded to Vaasa. The nurse took magnified x-rays from teh right breast. A doctor made an ultra sound research. Both showed an approximately 5 mm x 8 mm sized dark spot, which was impossible to feel with hands and fingers. Two biopsies wewre taken. Intruding the breast with the nail did not hurt, it was anesthetized, but taking the proof bits did hurt. I was told that the samples would be sent to Tampere University hospital and that the results would come within 5 - 7 working days. The doctor talked right out about cancer, he considered it as a confirmed thing already. He said he'd call me immediately when he goets the results, and they willt hen immediately be passed to the hospital which will operate me - which should also happen some time soon, according tot he doctor. The nurse plastered the biopsy hole. I went out with my hurting breast. I was frightened to drive a car.
Surgery
August the 13th
Surgery
I have been to the hospital today and visited lots of departments there and met many people - the surgeon, the anesthesiolog, some specialized nurses... I have been taken x-rays of, they have done some blood work, I have been to asthma proofs (spirometry) - all things possible that they needed to check before the operation. The operation was scheduled on Aug 26th. The eczem on my skin on the operation area needs to heal first, I have to concentrate on it now.
I was assured by many people that I will be in good hands and that everything will be taken care of. Now I think I know almost too much about it all so that I have started to be scared LOL! The tumor is so small they need the x-ray specialist to put a metal thread around it so the the surgeon will find it suring the surgery.
I am so tired that I cannot write it all now, I will do that later. Just wanted to tell you the most important things first. The doctors were very satisfied with my values and everything.
The weather forecast tells there are more thunder storms on the way this coming week-end. Tomorrow we will visit my husband's aunt and his cousin. It will be lovely.
This Blog Post has been published previously on ugrifenno@hotmail.com on Windows Live. Feel free to add me!
Surgery
I have been to the hospital today and visited lots of departments there and met many people - the surgeon, the anesthesiolog, some specialized nurses... I have been taken x-rays of, they have done some blood work, I have been to asthma proofs (spirometry) - all things possible that they needed to check before the operation. The operation was scheduled on Aug 26th. The eczem on my skin on the operation area needs to heal first, I have to concentrate on it now.
I was assured by many people that I will be in good hands and that everything will be taken care of. Now I think I know almost too much about it all so that I have started to be scared LOL! The tumor is so small they need the x-ray specialist to put a metal thread around it so the the surgeon will find it suring the surgery.
I am so tired that I cannot write it all now, I will do that later. Just wanted to tell you the most important things first. The doctors were very satisfied with my values and everything.
The weather forecast tells there are more thunder storms on the way this coming week-end. Tomorrow we will visit my husband's aunt and his cousin. It will be lovely.
This Blog Post has been published previously on ugrifenno@hotmail.com on Windows Live. Feel free to add me!
The importance of knowing history
The importance of knowing one's history
I am not sure if my eyes healed. They seem to have symptoms still. I should be sleeping already but just a note... telling that I ahve written a speech which I will hold in a home town feast tomorrow. The politiciams want to close our leather museum, and I am startging me speech with a quote: "A nation who is not aware of its history will lose its future."
Just tomorrow - then the busiest time in the year is over and I hope things will be more peaceful. And I will have more time for myself. I will be half-dead after tomorrow but I will recover soon. So far, the home town festival has been a success, in my opinion!
This Blog Post has been published previously on ugrifenno@hotmail.com spaces on Windows Live. Feel free to add me!
I am not sure if my eyes healed. They seem to have symptoms still. I should be sleeping already but just a note... telling that I ahve written a speech which I will hold in a home town feast tomorrow. The politiciams want to close our leather museum, and I am startging me speech with a quote: "A nation who is not aware of its history will lose its future."
Just tomorrow - then the busiest time in the year is over and I hope things will be more peaceful. And I will have more time for myself. I will be half-dead after tomorrow but I will recover soon. So far, the home town festival has been a success, in my opinion!
This Blog Post has been published previously on ugrifenno@hotmail.com spaces on Windows Live. Feel free to add me!
Saldo for this morning
July 28th
Saldo for this morning
Have seen ONE doctor today. He said I have conjuctivitis in my eyes, and gave me antibiotic+cortizine drops for that, then listened to my lungs and said I have bronchitis and gave me antibiotics for that... and I have yet another doctor appointment in the evening. No wonder I have been so weak that my hands and legs are shaking and trembling and I can sleep a whole day!
This Blog Post has been published previously on ugrifenno@hotmail.com space at Windows Live Spaces, feel free to add it!
Saldo for this morning
Have seen ONE doctor today. He said I have conjuctivitis in my eyes, and gave me antibiotic+cortizine drops for that, then listened to my lungs and said I have bronchitis and gave me antibiotics for that... and I have yet another doctor appointment in the evening. No wonder I have been so weak that my hands and legs are shaking and trembling and I can sleep a whole day!
This Blog Post has been published previously on ugrifenno@hotmail.com space at Windows Live Spaces, feel free to add it!
Asthma trouble
July 27th, 2010
Asthma trouble
Had an awful night. It was hot, the air didn't move, and I had continuous asthma attacks and could neither breath nor sleep. Took really a lot of asthma medication and feel awfully weak due to it now. Slept first towards morning when opened windows and doors again after the thunder storm and the air was cool and breathable.
This Blog Post has been published earlier on ugrifenno@hotmail.com space at Windows Live. Feel free to add it!
Asthma trouble
Had an awful night. It was hot, the air didn't move, and I had continuous asthma attacks and could neither breath nor sleep. Took really a lot of asthma medication and feel awfully weak due to it now. Slept first towards morning when opened windows and doors again after the thunder storm and the air was cool and breathable.
This Blog Post has been published earlier on ugrifenno@hotmail.com space at Windows Live. Feel free to add it!
Tuesday, July 6, 2010
Birthday contemplating
I am celebrating my 52nd birthday tomorrow. I am happy of all congratulations I have received here, and elsewhere. I love birthdays, they are an essential part of my culture and my upbringing and also of my family life. We are a family of five, and our birthday celebration starts with my birthday in July, and is continues by one birthday each month up till November when it is my husband's birthday. Or, actually, it continues to the birthday celebration of Lord Jesus Christ, our Savior, at Christmas. Because of Him. we can celebrate our birthdays too.
Getting older and gaining more years is something we tend to take for granted - until it is not granted anymore.
My father died before he ever saw his 52nd birthday. Three months before he'd have been 52, he was dead, and his life was over. My only brother died two years ago shortly after his 42nd birthday. Both my elder sister and my elder brother died as infants. One of my own children never saw life. In many countries of the world the life time expectancy is gone long before 52. I consider myself really lucky and really happy and really privileged to have lived up to this age. It is worth celebrating, and it is a reason to be grateful of.
This time, I have much more reason to be grateful and celebrate to the fullest because I have overlived a hard year. I have been seriously ill for a long time, and I have only just and only slightly recovered. I am not even completely well yet, and I don't know if I will ever be, but I am alive. My doctor said to me at one point during the past year that I was going to lose my life. I knew it was so, but I was not able to do anything else than pray, and wait, and trust that if there still is something for me to accomplish in this world, I will survive. I did, and I am most grateful of each new day when I wake up and am able to go to work. My heart is filled with joy when I can breathe, and I am happy - really happy - when I climb into the car, stiff, and achy, and in great pain, sometimes even out of breath, and swetty from the struggle all morning routines have been to me - because I know that once in the car, the worst is over, the rest of the day will be easier. My life is filled with pain that drives me crazy sometimes but still I am happy I get older and get more life experience, more happy moments to share with those who are really there.
This special day I am incredibly happy of everyone who realizes that birthday is a special day for me. It is very special for the simple reason that I am alive. Life is a gift. It is worth celebrating each year - it would be worth celebrating each and every day. Life lived like me, surrounded by a loving and caring family and amazing, fantastic friends both on- and offline, is so much more than many of us can hope for that I have all the reason to give thanks to the Lord, and also to all of you who are part of my life. Thank you for being there, and thank you for celebrating with me! I love you!
With all my heart,
"Fenno"
Getting older and gaining more years is something we tend to take for granted - until it is not granted anymore.
My father died before he ever saw his 52nd birthday. Three months before he'd have been 52, he was dead, and his life was over. My only brother died two years ago shortly after his 42nd birthday. Both my elder sister and my elder brother died as infants. One of my own children never saw life. In many countries of the world the life time expectancy is gone long before 52. I consider myself really lucky and really happy and really privileged to have lived up to this age. It is worth celebrating, and it is a reason to be grateful of.
This time, I have much more reason to be grateful and celebrate to the fullest because I have overlived a hard year. I have been seriously ill for a long time, and I have only just and only slightly recovered. I am not even completely well yet, and I don't know if I will ever be, but I am alive. My doctor said to me at one point during the past year that I was going to lose my life. I knew it was so, but I was not able to do anything else than pray, and wait, and trust that if there still is something for me to accomplish in this world, I will survive. I did, and I am most grateful of each new day when I wake up and am able to go to work. My heart is filled with joy when I can breathe, and I am happy - really happy - when I climb into the car, stiff, and achy, and in great pain, sometimes even out of breath, and swetty from the struggle all morning routines have been to me - because I know that once in the car, the worst is over, the rest of the day will be easier. My life is filled with pain that drives me crazy sometimes but still I am happy I get older and get more life experience, more happy moments to share with those who are really there.
This special day I am incredibly happy of everyone who realizes that birthday is a special day for me. It is very special for the simple reason that I am alive. Life is a gift. It is worth celebrating each year - it would be worth celebrating each and every day. Life lived like me, surrounded by a loving and caring family and amazing, fantastic friends both on- and offline, is so much more than many of us can hope for that I have all the reason to give thanks to the Lord, and also to all of you who are part of my life. Thank you for being there, and thank you for celebrating with me! I love you!
With all my heart,
"Fenno"
Friday, February 12, 2010
Struggling to get more fit
Had a remarkably better day today than the snow storm day was yesterday. I had my tooth repaired - a piece of it had gone missing, now it is whole again - and I started motioning again, because my asthma specialist said that I could. I had the thermal mask on and yet I coughed after having walked for just a short while. I had taken the attack medicine in beforehand, yet after having walked half of the distance, walking started to succeed without immense shortness of breath and an incredible stiffness in legs (since there was not enough oxygen). Still it was by no means normal walking. I don't know how long it will take but I really have to concentrate in my efforts to get more fit now. I don't even know if it is possible, and to which degree, but I must do my best. Both asthma and fibromyalgia make it difficult and they even work together to add on each other's harmful effects, but I still have to try to overcome this really bad and weak physical state.
I have been able to cut my edible cortizone in half, finally! That is really good news - it is a very harmful medicine which anyway has been necessary to maintain breathing and to treat the lungs while the infection has been as worst. My doctor told me to take calcium supplements in order to prevent possible damage to bones. My bones have been scanned and they have been in excellent condition; they should rather stay that way too.
Otherwise there is tons of new snow everywhere but the country just keeps going. Workers have been ploughing snow all through yesterday, last night and today, and you could ask, "What snow storm?" Everything is cleaned, roads are open, no school days or working days were canceled, we have electricity, shops are open... my respect to those who have made all this possible!
Today was a sunny day, really a lot of light when it was reflecting from the white snow all over!
At home, my husband and my older daughter did the shoveling of the snow. How wonderful to have such family members!
I have been able to cut my edible cortizone in half, finally! That is really good news - it is a very harmful medicine which anyway has been necessary to maintain breathing and to treat the lungs while the infection has been as worst. My doctor told me to take calcium supplements in order to prevent possible damage to bones. My bones have been scanned and they have been in excellent condition; they should rather stay that way too.
Otherwise there is tons of new snow everywhere but the country just keeps going. Workers have been ploughing snow all through yesterday, last night and today, and you could ask, "What snow storm?" Everything is cleaned, roads are open, no school days or working days were canceled, we have electricity, shops are open... my respect to those who have made all this possible!
Today was a sunny day, really a lot of light when it was reflecting from the white snow all over!
At home, my husband and my older daughter did the shoveling of the snow. How wonderful to have such family members!
Thursday, February 11, 2010
Ignored, neglected, betrayed when sick
Ignored and neglected when sick
When you get ill, you get sympathy. Warm words, caring, love, affection, prayers, checking-ons.... you think. Maybe if you have flu you will get all that, for a short while. Not if you have something else. Definitely not if you are seriously ill. Then what you get is people turning their backs on you. People going away. People right away disappearing from your life. Severe chronical illness seems to sort true friends from those who just pretend friendship. Most seem to have just pretended. Suddenly they have much to do, somewhere else. Suddenly they are busy. Somewhere else. Suddenly they don't have time - for you.
Okey we who are chronically ill don't need that. We do not deserve bad treatment. Therefore we withdraw. What happens to us is human. It happened even to our Lord Jesus Christ. When he needed support, his friends were sleeping. Not one hour could they stay awake with him and support him in his struggle. He even asked them for support - I have not asked. And He, too, was betrayed by one of His closest friends. It must have hurt Him enormously. For I have noticed that too - closest friends get very distant when you need their support. They are even the biggest cowards to betray you when it suits their own intests. They are not defending you against other world - they are letting other world smash you in their feet if defending would demand an effort or taking part officially, publicly. You get to think they are ashamed of you, not proud of you.
In the end, getting seriously and chronically ill is a blessing. It really shows you very clearly and without doubt who is the real friend. And heavens, they are not so many.
When you get ill, you get sympathy. Warm words, caring, love, affection, prayers, checking-ons.... you think. Maybe if you have flu you will get all that, for a short while. Not if you have something else. Definitely not if you are seriously ill. Then what you get is people turning their backs on you. People going away. People right away disappearing from your life. Severe chronical illness seems to sort true friends from those who just pretend friendship. Most seem to have just pretended. Suddenly they have much to do, somewhere else. Suddenly they are busy. Somewhere else. Suddenly they don't have time - for you.
Okey we who are chronically ill don't need that. We do not deserve bad treatment. Therefore we withdraw. What happens to us is human. It happened even to our Lord Jesus Christ. When he needed support, his friends were sleeping. Not one hour could they stay awake with him and support him in his struggle. He even asked them for support - I have not asked. And He, too, was betrayed by one of His closest friends. It must have hurt Him enormously. For I have noticed that too - closest friends get very distant when you need their support. They are even the biggest cowards to betray you when it suits their own intests. They are not defending you against other world - they are letting other world smash you in their feet if defending would demand an effort or taking part officially, publicly. You get to think they are ashamed of you, not proud of you.
In the end, getting seriously and chronically ill is a blessing. It really shows you very clearly and without doubt who is the real friend. And heavens, they are not so many.
Saturday, February 6, 2010
Everything cannot be cured
Such a bad day, asthma-wise. Anything triggers an attack: laughing, having a shower, just whatever. Snow-storm out-doors, and I suffer from a bad case of fibro fog too, added with a really deep blue. I am starting to think that I will really never get well anymore. Illnesses are like that sometimes. Everything cannot be cured. BOnus: some friends seem to think that now is the appropriate time to turn their back to me. So I can only think that I now know them better than I did before.
Monday, February 1, 2010
Spoon theory
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Above is the link to a wonderful essay on Spoon theory. It is a description on what it is to be chronically ill. It is also my life, explained in a very understandable and concrete way!
I recommend that you just take time and read it. Sometimes it might be useful to know.
Above is the link to a wonderful essay on Spoon theory. It is a description on what it is to be chronically ill. It is also my life, explained in a very understandable and concrete way!
I recommend that you just take time and read it. Sometimes it might be useful to know.
Each day's share of energy
With fibromyalgia, you have a certain amount of energy for each day. It is not the same amount for each day, but you cannot exceed the amount there is. If you use it all already in the morning, there is nothing left for the rest of the day. If you have just a little energy for a day, you must plan thoroughly how to use it. Maybe that day you can only get dressed, and that is it. Maybe another day you are capable of being active most of the day. Even then, if you struggle too much to start with, you may end up having your energy gone before the day has turned into evening. And you never know beforehand what kind of a day it will be before you are there.
I felt this very concretely today. I had planned to go on with my cleaning work since it went so well yesterday, and I would have an entire day for it... even in the morning it felt possible. Then, before I had dressed up, the youngest one phoned from school. She was crying and telling she had to stay after school to do the homework she had not done at home. Then she asked me to bring the blood sugar meter, she did not find the one she had at school. I promised. She had also left her telephone at home. Complete mess. I dressed up, found the meter (the one she uses at home; I was sure she had the one for school at school somewhere, or in her backbag, just she had got so shocked about the punishment that she had not found it) and the telephone, took reserve keys to my husband's car - he had driven away with mine, to have the battery changed...). I brushed off the snow and lifted up the steering wheel... and did not get it out of the yard. Tried this way and that way and even took the carpets out of the car and put them under the wheels - no. Has never happened to me before but perhaps I was nervous too. And I was getting angry because I had to work out-doors and it was getting on my lungs... off to brush the other car off the snow, lift up the steering wheel, then rush indoors to look for the keys - which I was looking for in two floors, running in hte stairs, but did not find them. A few attacks of asthma later I called my husband to ask if he remembered where the keys were. He came to take the meter to the daughter at school. More than 1 hour had gone, and they had already found the other meter there.
This is NOT what I am on sick leave for. I am not supposed to be running back and forth and to be stgruggling physically out-doors when it is harmful for asthma.
After all that, I was trembling all over and had definitely no energy left. All I could do was go to bed. I felt frustrated. I knew I could have used that energy for cleaning - now I used it for struggling with things that did not lead anywhere. Nothing that I had done was of any use, but my energy had all gone. I cannot but give up. This day is as good as gone, for me.
Sigh.
I felt this very concretely today. I had planned to go on with my cleaning work since it went so well yesterday, and I would have an entire day for it... even in the morning it felt possible. Then, before I had dressed up, the youngest one phoned from school. She was crying and telling she had to stay after school to do the homework she had not done at home. Then she asked me to bring the blood sugar meter, she did not find the one she had at school. I promised. She had also left her telephone at home. Complete mess. I dressed up, found the meter (the one she uses at home; I was sure she had the one for school at school somewhere, or in her backbag, just she had got so shocked about the punishment that she had not found it) and the telephone, took reserve keys to my husband's car - he had driven away with mine, to have the battery changed...). I brushed off the snow and lifted up the steering wheel... and did not get it out of the yard. Tried this way and that way and even took the carpets out of the car and put them under the wheels - no. Has never happened to me before but perhaps I was nervous too. And I was getting angry because I had to work out-doors and it was getting on my lungs... off to brush the other car off the snow, lift up the steering wheel, then rush indoors to look for the keys - which I was looking for in two floors, running in hte stairs, but did not find them. A few attacks of asthma later I called my husband to ask if he remembered where the keys were. He came to take the meter to the daughter at school. More than 1 hour had gone, and they had already found the other meter there.
This is NOT what I am on sick leave for. I am not supposed to be running back and forth and to be stgruggling physically out-doors when it is harmful for asthma.
After all that, I was trembling all over and had definitely no energy left. All I could do was go to bed. I felt frustrated. I knew I could have used that energy for cleaning - now I used it for struggling with things that did not lead anywhere. Nothing that I had done was of any use, but my energy had all gone. I cannot but give up. This day is as good as gone, for me.
Sigh.
Monday, January 25, 2010
Finally sleeping!
After months of sleeplessness I have today been sleeping for 7 hours! It feels right now a bit heavy in the head and drowsy but otherwise just wonderful! I am so grateful for all your prayers and thoughts and everything positive that I have received! I will go to sleep again. Ohhh - this is such a great thing to happen, I was already about to lose my sanity. I am so so grateful - cannot express in words how I feel! Thank you everyone for prayers and thoughts and all positive!
Tuesday, January 19, 2010
The motto of the day is here
Found the motto for the day. God bless Martin Luther King Jr. who is the age of my mother and would have been 81 yesterday if he had lived. My Twitter account has lots of quotes from him from yesterday but this I found (in Twitter) first now in the evening:
"We must accept finite disappointment, but never lose infinite hope." MLK
I have always admired MLK jr - he did an amazing job and left such an ethic inheritance to all of us to carry on. It looks as though my contemplating through the day would have been preparing to read these words and to understand that it is there - why I am doing all this. Why I am going through this. Why I don't see light, why I face disappointments. I have been given the precious gift of life. I will be given the strength and energy to go through it, find light, get positive, make people around me feel good. Maybe it is my time to receive now. To rest in love that carries, and to receive what I am given, and feel grateful.
God - help me fulfil the task I have been given, with your help because self I cannot do it. Bless everyone around me and if you can, use me for doing so; I am here.
Amen.
"We must accept finite disappointment, but never lose infinite hope." MLK
I have always admired MLK jr - he did an amazing job and left such an ethic inheritance to all of us to carry on. It looks as though my contemplating through the day would have been preparing to read these words and to understand that it is there - why I am doing all this. Why I am going through this. Why I don't see light, why I face disappointments. I have been given the precious gift of life. I will be given the strength and energy to go through it, find light, get positive, make people around me feel good. Maybe it is my time to receive now. To rest in love that carries, and to receive what I am given, and feel grateful.
God - help me fulfil the task I have been given, with your help because self I cannot do it. Bless everyone around me and if you can, use me for doing so; I am here.
Amen.
Sorry
Why is it that I feel I should apologize for annoying people with illness issues I write on my blog? I don't apologize anyway because this is an illness blog as I have stated. Reading is voluntary: those who are interested, read. And nowadays, honestly, with all these problems and feelings around them and everything... I just cannot focus on much else. Today I am trying to overcome my deep disappointment for not being able to cut down on steroids as planned. But every medicine I take now is essential for my life and in the end I am now struggling to keep alive so I just have to take what is essential. If I cannot live without something, I take it. It is as simple as that.
More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.
I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.
I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.
I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...
When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.
My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.
More than anything I value my family who wholeheartedly support me all the way. More than anything I value my true friends who stay with me because now very many take distance. They may as well go. I have today cleaned some of my sites from contacts that I did not anymore consider worth while. I have said goodbye to a dear (former) friend who has more interesting things going on in his life and things so well he does not need me anymore. That is life, and i try not to feel sad but relieved.
I have blocked people from IM / chat to be available for those who are true friends and don't play games and have fun with other people.
I trust that God is not leaving me alone. I also appreciate my colleagues who today have been in touch after a long silence. I was already thinking I was not even missed but yes I am - they needed to ask things from me, talk with me, hear my opinion... feels good.
I wish to get well enough to be there for my family, and not to be the kind of zombie I have been today. Today this was all I could do. Perhaps tomorrow will be a better day - after all, I am back to the original dose of steroids so it could be. But to what price...
When do I need professional help to overcome all these emotions and frustrations? Will writing about them be enough? What could I do? Write an e-book? Why not, to myself... Blogs, social media etc are after all so fragmentary and sometimes I feel I'd need to process text which has length and cronology and which would be stilisized before publishing.
My Pidgin contacts list looks odd now as I have reorganized it to serve my needs better. I will get used to it.
New appointment
Right - I got a new appoinntment for the asthma specialist. Got to go to see him again in two weeks because diminishing cortizon is not succeeding. In case it should start succeeding in the meanwhile, I can always cancel the appointmant.
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