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Phew! Have been cooking and baking most of the day and have surely overdone it but I have also had wonderful time and once again seen what an amazing family I have and how well it works together! I feel so entirely happy... I have enjoyed the whole day, and especially I have been happy to meet friends and our godson who drove this way on their way home from Lapland.
I have been going on in my thinking about isolating... sometimes, maybe very often, I am indeed too tired to talk to anyone, and sometimes, maybe really very often indeed, I wish I will meet nobody who wants someting from me... but... there is a but indeed...
I love to be needed. And I do need my friends. I love my friends and I miss them even if it is me who is staying away from contacts. And I am still, still truly happy when I meet someone and can have a good talk like tonight. I was even beforehand happy to know we'd meet them, and I am still happy to have met them... it means really a lot.
It is not easy to be a friend to someone who has cancer. Many people, also my friends, are afraid of the disease, and I know many of them have had to face their own fears to be able to stay in touch with me. To many, cancer has till now meant death and loss. A few have lost their parents to cancer. True - I may die of cancer but I am not dying just yet. I may even get well, actually chances are quite big I am getting well. Anyway, I am living in this moment now, and I cannot know of the future. I wish my friends would not try to, either. We have this day together, it is now that we have each other - let us enjoy it now when it is possible, and not worry about the future.
I also know that I am a creature made by God. I cannot tell Him He has made something wrong when creating me. If someone tells otherwise, s/he must be wiser than God is. So I just have to accept myself the way I am - incomplete, unperfect and whatever. I am good that way and I can be happy and proud of myself even though I am not complete. It is being merciful to myself (and I still have to learn a lot about it).
I am happy I am me, and I am happy my family and friends are the wonderful persons they are, I am really privileged in that sense. I am also so proud of my friends, especially those who have dealt with their own fears to be able to stay in touch - I appreciate it more than I can say.
Showing posts with label friendships. Show all posts
Showing posts with label friendships. Show all posts
Sunday, January 2, 2011
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.
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.
Tuesday, January 19, 2010
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.
Wednesday, January 6, 2010
Steroids
Steroids improved my outhaling (PEF) values remarkably although they are still very poor, about 50% of the optimum. But it is better than yesterday's 20 - 25 % which means continuous feeling of suffocating and unability to do anything at all. Had several asthma attacks though. This morning (by 9 a.m. which is the time now) I have already had 3 - 4 attcks. Feel weak, tremble from all medication but am able to breathe. For once I am grateful about steroids. I feel the improvement. I have slept a bit better though not a bit longer... How would life feel with a decent sleep? There are things that confuse me and confuse my husband too but he is a great supporter and encourager. Yesterday I opened one social media site which I had not been using for ages, and I found tens of Christmas and New Year greetings from there - it felt like Christmas once more! I had also received messages, and I have found at least yet one who is praying for me - a total stranger but because he is a Christian, he does not feel like a stranger. During this disease, I have been betrayed and let down by one of my closest friends, and therefore it is comforting to see that God is taking care of me - other old friends are there, and complete strangers are used by God to provide me with prayer support. I am completely dependent on other people's prayers, I feel they are holding me above the surface and I feel every prayer in my being. I was praying, together with a friend, to see what plan God has for me because He has "mislocated" me in a country where I don't survive the outdoor air and weather without special equipment. I was praying for me to see some meaning in getting this seriously ill, weak and helpless. And God is answering: first, to show me that I cannot trust one of my best friends... second, that He is taking care of me in the form of even complete strangers, in addition to true good friends and family. Further, that I must and can rely on other people - something I have never been able to do. And still, that it is only Him I need, He will take care of the rest. God bless you all!
Tuesday, January 5, 2010
Depressed, happy, depressed....
No matter how I reason and try to be brave, I cannot help feeling depressed about having to be on steroids again - and looking out of the window and knowing that without special equipment, the out-door air would kill me. Have been shopping with my daughters today and I feel good that I can do it, that I still have income and can take care of their needs, and mine, and my husband's... Lots of wonderful things have happened today and yesterday and I want to say thanks to all of you who recognize yourselves here. You make the difference in my life. Yet there are people who seem to think that I cannot see through lies, and that I don't recognize indifferent attitude when I face one, even if it is masked. That I am ill does not mean that I am an idiot, or somehow immune to indifference. I am not. I could even tell I am nore sensitive than normally, recognize more nuances than I normally do. I pay attention to both good and bad things, and feel deeper about both. Perhaps this disease and this difficult situation was given to me to be able to see clearly - to be able to see who is the real friend and who is ready to let me down, for whatever reason.
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