Dear world,
I feel closer to F than I have ever felt before. Significantly closer. The way I see him has changed in the last two weeks. Before that he was just my boyfriend. I didn't know if it would be me and him for good, didn't know whether we could work after this whole cancer thing was over and we would have a normal life. But now, I just feel like we belong together. We are a team. He's not my boyfriend, he's my partner. My lobster (reference to Friends, where it is said that lobsters fall in love and mate for life, walking around claw in claw.) I even told him that he was my lobster, and he responded by holding out his hand like a claw for me to take, haha :) Which I obviously did!
The weeks before this were actually really tough! I went to Denmark for two weeks, which was nice in that I got to see my family and a lot of old friends. But at the same time, F started on radiotherapy, which has turned out to be absolutely dreadful. We had all thought that radiotherapy would be much more durable than the chemo. We knew that his skin could get itchy and uncomfortable, and various other small side effects could occur, but we expected much less nausea and fatigue. In reality he has hardly been able to get out of bed of pure exhaustion and discomfort. Every single day has been like the worst days of chem. It was hard to hear about.
When I returned to England, I had assumed that I would be visiting F immediately, since all other times, when I have been in Denmark he has been counting down with me for my return, hardly able to wait the last few days, and he has come with his mum to pick me up at the airport. This time he didn't want to see me at all. Not for the first 10 days I was in England. He would barely talk to me on the phone when I called, and hardly replied to any of my messages. I got really scared that the cancer was just becoming too big a burden in his life, so he would not have mental space for a girlfriend. The cancer sometimes turns him into a different person: depressed, grumpy, angry, withdrawn. I know that this is not who he really is, and I try to be as overbearing with any rude comment he makes when he is like that, or when he ignores me and wants to be alone. But after 3 weeks of not being himself, I got really scared that he was turning into this other person more permanently.
Finally, I put a bit more pressure on him, to let me come see him. His mum had told me she really thought he would benefit from a visit, so I was more insisting than I would have been otherwise. I told him I didn't mind to pay the £30 for the train at all, or the 3 hour ride. And that I wouldn't be disappointed or bored if he wanted to sleep while I was there. He initially said he felt ill and just didn't want company, which I had to accept as an excuse. But then suddenly, after we had talked about other things for a while, he gave in and said he wanted me to come. He told me that after really hearing my voice again, he realised how much he missed me, and said that the main reason he didn't want me to come was actually that he was feeling self conscious about his appearance these days. I offered to come un-showered with greasy hair and no make-up or deodorant on, wearing old clothes. He said that would actually make him feel better, so in the end that was what I did. Very weird experience to be dressing down and trying to look particularly bad when you go see someone you love for the first time in a month.
And once I was there, oh my! He was just the most wonderful, caring, affectionate person I have ever known him to be. He was so happy to see me, and so happy I came in the end. I had not expected anything from the visit, I had prepared for him sleeping a lot of the time I was there, and being moody for most of the rest. But I was just so taken aback by how loving he was to me, and how deeply I connected to this human being! I have never in my life felt closer to another person. And I could see on him that he felt the same. It was really quite an extraordinary experience. I thought to myself that nothing will be able to tear us apart. If he still cares this much about me, after having put almost everything else in his life on pause because he just cannot care about it at the moment, then we are really special. I am really struggling to explain this. I just felt so strongly and surely about him, and even though I always worry that he is thinking the worst, this time I was so sure he felt the same way about me.
After I went back to Oxford, the feeling that we belong together just stayed with me, like a relieving peace in me that came from knowing that we can do it all. He won't ever stop loving me. I know that. And God knows I won't ever stop loving him either :)
It just feels really good to be so sure.
I have spent a while away from him since then, and I have also visited him once in the meantime, which was much less intense than the first visit, but still very nice. And nothing is going to chance my mind about this.
He is my lobster!
L
Wednesday, 30 April 2014
Friday, 11 April 2014
The world looks so unfamiliar to me
Everything seems so foreign to me these days. I don't understand the world I'm living in. My entire environment has changed, I don't recognise it. Of course I know all the streets, all the buildings, my room so well. Yet somehow it all looks different to me.
Imagine that one day aliens came to the earth. They came to live with us, walk amongst us, big green men from Mars with antennae on the head and black eyes. When you walked down the street they would be there, when you were shopping they would be there, when you went to sleep one would sit in the corner staring at you. You too would feel like you didn't know the world you lived in anymore. That the streets looked weird to you, the whole world just had a different feel to it, a different atmosphere. Like you saw the world for the first time.
Now imagine your boss or teacher came to you and said: "read these articles and write me a summary by the end of the day" and you protested: "but what about the alien sitting next to me, staring and hissing at me and poking my shoulder, how am I supposed to be able to concentrate while it's there" and you got the answer: "try to disregard it for a while, try to concentrate on your work and forget about the aliens."
And when you complained about how the aliens were tearing your room apart and preventing you from sleeping and sometimes kicking you in the stomach, people just said: "try to do something nice for yourself an afternoon to forget about them".
You'd want to scream too.
Now finally, imagine this only happened to you. No-one else were bothered by the aliens, maybe they didn't see them, maybe the aliens just didn't go to anybody else's houses or work etc. All other people just lived their normal everyday lives. They would respect how hard it was for you to live with the aliens tearing your life apart and scaring the living crap out of you, but they wouldn't really understand, cause no-one can imagine what it's like to have an alien sitting in the corner of your room with evil eyes, before one is actually doing it. They wouldn't understand how suddenly the whole world looked different to you, cause to them it all looked the same as always.
All they could do was to keep saying: "try to think about something else"
Imagine that one day aliens came to the earth. They came to live with us, walk amongst us, big green men from Mars with antennae on the head and black eyes. When you walked down the street they would be there, when you were shopping they would be there, when you went to sleep one would sit in the corner staring at you. You too would feel like you didn't know the world you lived in anymore. That the streets looked weird to you, the whole world just had a different feel to it, a different atmosphere. Like you saw the world for the first time.
Now imagine your boss or teacher came to you and said: "read these articles and write me a summary by the end of the day" and you protested: "but what about the alien sitting next to me, staring and hissing at me and poking my shoulder, how am I supposed to be able to concentrate while it's there" and you got the answer: "try to disregard it for a while, try to concentrate on your work and forget about the aliens."
And when you complained about how the aliens were tearing your room apart and preventing you from sleeping and sometimes kicking you in the stomach, people just said: "try to do something nice for yourself an afternoon to forget about them".
You'd want to scream too.
Now finally, imagine this only happened to you. No-one else were bothered by the aliens, maybe they didn't see them, maybe the aliens just didn't go to anybody else's houses or work etc. All other people just lived their normal everyday lives. They would respect how hard it was for you to live with the aliens tearing your life apart and scaring the living crap out of you, but they wouldn't really understand, cause no-one can imagine what it's like to have an alien sitting in the corner of your room with evil eyes, before one is actually doing it. They wouldn't understand how suddenly the whole world looked different to you, cause to them it all looked the same as always.
All they could do was to keep saying: "try to think about something else"
Saturday, 29 March 2014
The art of redefining the relationship when you get bad news
Dear world,
We got bad news on Monday. The Brentuximab treatments have not been working. The cancer has not spread further, but it has also not been reduced in size, so the doctors have now given up on chemotherapy all together.
F will start on radiation therapy on Friday, and then (assuming this reduces the size of the cancer to a "controllable amount") they will give him a stem cell transplant afterwards to get rid of the last bits of cancer.
I no longer know what his chances are, and whether we can allow ourselves to be optimistic. I was in Berlin, visiting a friend, when they got the news, so I didn't see the doctor's face and hear the words from him. I only know what F and his mum told me afterwards. His mum seemed to think that the doctors still believe there is a decent chance this could work. F seems to think that it is a bit naive to keep believing in it. That his mum is just desperate to keep the hope.
I am not sure what to think. F's situation has become so rare: it is not possible to look up what the survival rates are of a young person, early 20's, who's got refractory Hodgkin's lymphoma and has not responded to first nor second line chemotherapies/antibody treatments. And even if those statistics existed, I am not sure that I would want to know what his chances are. These probabilities just make you crazy. What does a 30% or a 80% survival rate mean to a single person anyway. That we should be 30% or 80% worried? That we should assume he will fall in the bigger category and then just either pretend there is no risk at all or begin to plan the funeral. Probabilities just make you worry more than they help. And so far, F has always fallen into the least likely group anyway. What are the chances of getting cancer at age 21? What are the chances that he is one of the few people that does not respond to first line treatments. It is just so messed up!
When I first got the news 5 days ago, it didn't change my attitude to the situation too much. I was prepared for the blow of disappointment, I took it in, cried a bit, talked it through for a couple of hours with my close friend, and then accepted that this was what happened, and that it would not chance anything. F still has the same amount of cancer there has been all along. They are still looking for some treatment that will work. We have tried the disappointment before.
I knew that F had really been hoping this was working, so I was not surprised when he responded to the news with silence and withdrawal. When he gets difficult news he always wants his own space and time to just think the situation over and come to terms with it. So I let him have a couple of days of space, sending him texts just to let him know that I was there for him and that he could just contact me when he felt like it, reassuring him that he didn't need to worry about me. I figured that he would come to the same conclusion as I: that this doesn't really change too much.
But after having talked to him I realise, that he definitely thinks it changes a lot, and that maybe he is more right than I am. He thinks that there is just only so much you can do with radiotherapy without burning off the entire body, and that it is quite rare people get cured of lymphomas without chemo. The doctor's dismissal of further chemo treatments has really taken away most of F's hopes for the future. He told me that he had spend a LOT of time thinking about this in the past week, and that he was gaining some sort of acceptance with the situation. We don't talk about death directly, and I am not sure exactly how much he has accepted, and I also think he has not lost hope 100%. But the conversations have become very serious. I cannot imagine what is going through his head: in some ways I wish that I had tried to be in the situation where he is now, just so that I could understand it from his perspective. But all I can do is try to be as supportive and helpful as ever.
We have talked a lot about what we are going to do with the relationship, now and in the future. Of course both of us just want more than anything to stay together, and have the possibility of a long happy life together. I love him more than anything, it's such a warm happy love inside me, that just wants the best for him. And I know that I mean the world to him too, that he really cherishes this relationship. We are so good together, we make each other happy, we fit so well together.
But we have just reached a state where the possibility of him not surviving is becoming more than just a distant fear. It fills both of our minds a lot, and we both need to put our thoughts into words, and discuss where that leaves us.
I could never leave him and live on in a world where I barely know whether he is alive or not. He has become such a big part of my life, and breaking up as a normal young couple to live separate lives and find new partners is just not an option.
On the other hand, there is a horrible but real possibility that he won't make it through this illness and that he perhaps will spend the next 5-10 years in and out of hospitals on different treatments. If that becomes the reality then it cannot really make sense for me to stay with him as his girlfriend through those years. I would spend my time upset that I am losing the man I care so much about, and he would spend the years feeling that he is waisting my youth and preventing me to move on with my life. F is such a conscientious guy, he would never allow me to stay with him. And even though I am very reluctant to agree with him, I also don't want to ruin my own life, and I do see the reason behind his concern.
The issue is that even if he is loosing the battle, there may not be a time where the doctors tell us: "now your cancer is terminal for sure, there is nothing more we can do for you". If his cancer keeps on staying the same size it is now, they may spend years trying more and more experimental and obscure treatments on the off chance that it will work, while getting more and more pessimistic. F doesn't want to drag me through that.
Initially I just wanted to devote my life to him, and stand by his side no matter what happens. If he got better I would be the girl who stayed loyally with him through it all, if he died quickly I would be there holding his hand and if it turned into years of experimental treatments I would help him through it. Cancer is so pointless and you feel so helpless, so the thought of sacrificing big parts of myself for him just seemed so meaningful to me. I wanted to stand strong with him, and take whatever pain came our way, and get through to the other side with each other hand in hand. Or to get married and run away and live passionately together in what little time we would have left. At least if I spend that time with him, people would know how much he meant to me, how impossible a loss this is for me. The same strange feeling of pleasure you get from watching a really tragic romantic film, that same pleasure I got from thinking we could be those people.
But cancer is no rom-com. Cancer is reality slapping you in the face, and you have to beat all your instincts and hopeless ideas and face the boring, cold and terrifying real life. I love F so much, I would give up my degree and go through all his treatments myself if that would cure him. But it won't. And ruining my own youth for him doesn't make us the most romantic and desperately loving couple in the history, it just makes me a stupid young girl who is throwing away her good years for a hopeless cause.
So I have spent a couple of days now crying, talking things through with my parents, crying some more, and trying to come to terms with the fact that we may need to split up in some way eventually. I feel like the most horrible girlfriend there ever was, just thinking of letting F break up with me because he gets cancer. I am afraid people will think I don't love him, if I just leave him to die on his own. But I wouldn't do that either!
We have agreed now to continue with our proper relationship for a couple of months more, until we hear whether the radiotherapy has worked. If it has, then I promise you I will be a happy little woman! If not then we will need to re-evaluate what we are to each other. We could never break up in the normal sense, cause we will still love each other and wish to be together. But maybe we can remove the strings from the relationship, all the expectations of how much we need to be there for the other person, of how often I should visit, and also allow each other to see other people. At the moment I cannot begin to think about dating someone else, but if time passes by we may need to slowly loosen up the relationship more and more, and become something that resembles friends. I don't think we could ever become friends in the normal sense, without romantic feelings between us, but the situation is so messed up and exceptional, that we would have to come up with a new type of friendship/relationship. He will need my support and my love, and I will need to know how he is doing and need to be there for him as well. We would have to develop a kind of love that knows we have no future and won't spend our lives together.
It's such a weird thought to me. I feel like I am losing part of my identity. I am not the same girl that I was a year ago, the cancer has changed so much in me, and now this prospect also changes my sense of what I am to F and what his cancer means to me. It's the bloody hardest thing I have ever gone through!
But for at least a short more time I will stay F's girlfriend, and we will continue aiming at a future together, at a cure for him. I want as much time with him in a "we can still make it" state of mind; of knowing that at least today we still belong together.
L
We got bad news on Monday. The Brentuximab treatments have not been working. The cancer has not spread further, but it has also not been reduced in size, so the doctors have now given up on chemotherapy all together.
F will start on radiation therapy on Friday, and then (assuming this reduces the size of the cancer to a "controllable amount") they will give him a stem cell transplant afterwards to get rid of the last bits of cancer.
I no longer know what his chances are, and whether we can allow ourselves to be optimistic. I was in Berlin, visiting a friend, when they got the news, so I didn't see the doctor's face and hear the words from him. I only know what F and his mum told me afterwards. His mum seemed to think that the doctors still believe there is a decent chance this could work. F seems to think that it is a bit naive to keep believing in it. That his mum is just desperate to keep the hope.
I am not sure what to think. F's situation has become so rare: it is not possible to look up what the survival rates are of a young person, early 20's, who's got refractory Hodgkin's lymphoma and has not responded to first nor second line chemotherapies/antibody treatments. And even if those statistics existed, I am not sure that I would want to know what his chances are. These probabilities just make you crazy. What does a 30% or a 80% survival rate mean to a single person anyway. That we should be 30% or 80% worried? That we should assume he will fall in the bigger category and then just either pretend there is no risk at all or begin to plan the funeral. Probabilities just make you worry more than they help. And so far, F has always fallen into the least likely group anyway. What are the chances of getting cancer at age 21? What are the chances that he is one of the few people that does not respond to first line treatments. It is just so messed up!
When I first got the news 5 days ago, it didn't change my attitude to the situation too much. I was prepared for the blow of disappointment, I took it in, cried a bit, talked it through for a couple of hours with my close friend, and then accepted that this was what happened, and that it would not chance anything. F still has the same amount of cancer there has been all along. They are still looking for some treatment that will work. We have tried the disappointment before.
I knew that F had really been hoping this was working, so I was not surprised when he responded to the news with silence and withdrawal. When he gets difficult news he always wants his own space and time to just think the situation over and come to terms with it. So I let him have a couple of days of space, sending him texts just to let him know that I was there for him and that he could just contact me when he felt like it, reassuring him that he didn't need to worry about me. I figured that he would come to the same conclusion as I: that this doesn't really change too much.
But after having talked to him I realise, that he definitely thinks it changes a lot, and that maybe he is more right than I am. He thinks that there is just only so much you can do with radiotherapy without burning off the entire body, and that it is quite rare people get cured of lymphomas without chemo. The doctor's dismissal of further chemo treatments has really taken away most of F's hopes for the future. He told me that he had spend a LOT of time thinking about this in the past week, and that he was gaining some sort of acceptance with the situation. We don't talk about death directly, and I am not sure exactly how much he has accepted, and I also think he has not lost hope 100%. But the conversations have become very serious. I cannot imagine what is going through his head: in some ways I wish that I had tried to be in the situation where he is now, just so that I could understand it from his perspective. But all I can do is try to be as supportive and helpful as ever.
We have talked a lot about what we are going to do with the relationship, now and in the future. Of course both of us just want more than anything to stay together, and have the possibility of a long happy life together. I love him more than anything, it's such a warm happy love inside me, that just wants the best for him. And I know that I mean the world to him too, that he really cherishes this relationship. We are so good together, we make each other happy, we fit so well together.
But we have just reached a state where the possibility of him not surviving is becoming more than just a distant fear. It fills both of our minds a lot, and we both need to put our thoughts into words, and discuss where that leaves us.
I could never leave him and live on in a world where I barely know whether he is alive or not. He has become such a big part of my life, and breaking up as a normal young couple to live separate lives and find new partners is just not an option.
On the other hand, there is a horrible but real possibility that he won't make it through this illness and that he perhaps will spend the next 5-10 years in and out of hospitals on different treatments. If that becomes the reality then it cannot really make sense for me to stay with him as his girlfriend through those years. I would spend my time upset that I am losing the man I care so much about, and he would spend the years feeling that he is waisting my youth and preventing me to move on with my life. F is such a conscientious guy, he would never allow me to stay with him. And even though I am very reluctant to agree with him, I also don't want to ruin my own life, and I do see the reason behind his concern.
The issue is that even if he is loosing the battle, there may not be a time where the doctors tell us: "now your cancer is terminal for sure, there is nothing more we can do for you". If his cancer keeps on staying the same size it is now, they may spend years trying more and more experimental and obscure treatments on the off chance that it will work, while getting more and more pessimistic. F doesn't want to drag me through that.
Initially I just wanted to devote my life to him, and stand by his side no matter what happens. If he got better I would be the girl who stayed loyally with him through it all, if he died quickly I would be there holding his hand and if it turned into years of experimental treatments I would help him through it. Cancer is so pointless and you feel so helpless, so the thought of sacrificing big parts of myself for him just seemed so meaningful to me. I wanted to stand strong with him, and take whatever pain came our way, and get through to the other side with each other hand in hand. Or to get married and run away and live passionately together in what little time we would have left. At least if I spend that time with him, people would know how much he meant to me, how impossible a loss this is for me. The same strange feeling of pleasure you get from watching a really tragic romantic film, that same pleasure I got from thinking we could be those people.
But cancer is no rom-com. Cancer is reality slapping you in the face, and you have to beat all your instincts and hopeless ideas and face the boring, cold and terrifying real life. I love F so much, I would give up my degree and go through all his treatments myself if that would cure him. But it won't. And ruining my own youth for him doesn't make us the most romantic and desperately loving couple in the history, it just makes me a stupid young girl who is throwing away her good years for a hopeless cause.
So I have spent a couple of days now crying, talking things through with my parents, crying some more, and trying to come to terms with the fact that we may need to split up in some way eventually. I feel like the most horrible girlfriend there ever was, just thinking of letting F break up with me because he gets cancer. I am afraid people will think I don't love him, if I just leave him to die on his own. But I wouldn't do that either!
We have agreed now to continue with our proper relationship for a couple of months more, until we hear whether the radiotherapy has worked. If it has, then I promise you I will be a happy little woman! If not then we will need to re-evaluate what we are to each other. We could never break up in the normal sense, cause we will still love each other and wish to be together. But maybe we can remove the strings from the relationship, all the expectations of how much we need to be there for the other person, of how often I should visit, and also allow each other to see other people. At the moment I cannot begin to think about dating someone else, but if time passes by we may need to slowly loosen up the relationship more and more, and become something that resembles friends. I don't think we could ever become friends in the normal sense, without romantic feelings between us, but the situation is so messed up and exceptional, that we would have to come up with a new type of friendship/relationship. He will need my support and my love, and I will need to know how he is doing and need to be there for him as well. We would have to develop a kind of love that knows we have no future and won't spend our lives together.
It's such a weird thought to me. I feel like I am losing part of my identity. I am not the same girl that I was a year ago, the cancer has changed so much in me, and now this prospect also changes my sense of what I am to F and what his cancer means to me. It's the bloody hardest thing I have ever gone through!
But for at least a short more time I will stay F's girlfriend, and we will continue aiming at a future together, at a cure for him. I want as much time with him in a "we can still make it" state of mind; of knowing that at least today we still belong together.
L
Tuesday, 18 March 2014
The art of slowly learning to create my own good days
Dear world,
I am surprised to be able to say, that the feeling of strength and independence has stayed with me most of the time in the past three days. Not all the time: I would never ask for that. But overall. Which is really good!
I have had a lot of moments where I felt capable of doing things, and moments where I was able to pull myself together and continue with my good day when the difficult thoughts came creeping up on me. Every time I felt like it was too much, or I got upset and sorrowful, I repeated my mantra to myself: I can do this. I pretended I was strong, and allowed myself to feel strong, and thereby I automatically gained the strength to wish to continue with my daily life and activities. I studied a bit, I read some interesting articles about non-study related things on the internet, I drew a bit with the new colours I bought, I went to coffee with friends, I bought my groceries and did the cooking and I wrote stuff on this blog. I spend a lot of time trying to convince myself that I am good off on my own, and partially succeeded.
I have largely accepted the fact that I may not see F for a longer time now, due to different circumstances (his side effects and me going to Denmark for a few weeks etc).
I have so far managed to keep a distance to the thoughts, which tell me that extended time apart will be bad for the relationship and that we are drifting apart. I have tried to deal with any disappointment I might feel towards F, and turn it into disappointment towards the cancer, which I can then easier accept and get rid of, leaving me happy about F and our relationship for what it is at the moment.
I feel like I have been able to deal with a lot of depressive thoughts in a much more constructive way than I would have been able to 6 months ago. That's a pretty cool feeling!
A friend of mine send me a poem today, just because she thought the text was beautiful: 'the dying child' by H. C. Andersen. The poem describes a child's thoughts and words to his mother in his final moments. I must say, I was quite moved by the poem, I find it very beautiful, peaceful and sad at the same time. But even though I felt so touched by the words, felt the sadness fill me up, I was not overwhelmed by it. For once I didn't cry. I was able to somehow observe the sadness inside me, from an outsiders perspective, and actually enjoy that feeling as a verification of my own humanity, and remind me that I am very much alive at the moment. And then after a few moments I let the sadness and the poem go, focussing my attention on other things.
I consider this quite a big step for me, in learning to take control over my own emotions and thoughts. By this, I don't mean that I want to become emotionless in any way. I mean that I want to learn to not be controlled by my emotions, and succumb to a mental state of helplessness and depression when things don't go my way. I wish to learn to have a stronger, and more positive outlook on things, and to be able to manage my own sadness, anxiety and fear of the unknown.
It's a lot to wish for, and a lot of work that needs to go into myself before I can claim to have achieved these things. But I feel like I am taking steps in the right direction ever so often, some big and some small. I am definitely moving, and that is victory enough in itself.
L
I am surprised to be able to say, that the feeling of strength and independence has stayed with me most of the time in the past three days. Not all the time: I would never ask for that. But overall. Which is really good!
I have had a lot of moments where I felt capable of doing things, and moments where I was able to pull myself together and continue with my good day when the difficult thoughts came creeping up on me. Every time I felt like it was too much, or I got upset and sorrowful, I repeated my mantra to myself: I can do this. I pretended I was strong, and allowed myself to feel strong, and thereby I automatically gained the strength to wish to continue with my daily life and activities. I studied a bit, I read some interesting articles about non-study related things on the internet, I drew a bit with the new colours I bought, I went to coffee with friends, I bought my groceries and did the cooking and I wrote stuff on this blog. I spend a lot of time trying to convince myself that I am good off on my own, and partially succeeded.
I have largely accepted the fact that I may not see F for a longer time now, due to different circumstances (his side effects and me going to Denmark for a few weeks etc).
I have so far managed to keep a distance to the thoughts, which tell me that extended time apart will be bad for the relationship and that we are drifting apart. I have tried to deal with any disappointment I might feel towards F, and turn it into disappointment towards the cancer, which I can then easier accept and get rid of, leaving me happy about F and our relationship for what it is at the moment.
I feel like I have been able to deal with a lot of depressive thoughts in a much more constructive way than I would have been able to 6 months ago. That's a pretty cool feeling!
A friend of mine send me a poem today, just because she thought the text was beautiful: 'the dying child' by H. C. Andersen. The poem describes a child's thoughts and words to his mother in his final moments. I must say, I was quite moved by the poem, I find it very beautiful, peaceful and sad at the same time. But even though I felt so touched by the words, felt the sadness fill me up, I was not overwhelmed by it. For once I didn't cry. I was able to somehow observe the sadness inside me, from an outsiders perspective, and actually enjoy that feeling as a verification of my own humanity, and remind me that I am very much alive at the moment. And then after a few moments I let the sadness and the poem go, focussing my attention on other things.
I consider this quite a big step for me, in learning to take control over my own emotions and thoughts. By this, I don't mean that I want to become emotionless in any way. I mean that I want to learn to not be controlled by my emotions, and succumb to a mental state of helplessness and depression when things don't go my way. I wish to learn to have a stronger, and more positive outlook on things, and to be able to manage my own sadness, anxiety and fear of the unknown.
It's a lot to wish for, and a lot of work that needs to go into myself before I can claim to have achieved these things. But I feel like I am taking steps in the right direction ever so often, some big and some small. I am definitely moving, and that is victory enough in itself.
L
Sunday, 16 March 2014
The art of feeling alive
Dear world,
I managed to do something different this morning. Something different about my mood. All of yesterday afternoon and evening I was just so incredibly sad. I missed F like I have never missed anyone before, and just felt hopeless and unable to stop the tears from falling ever so often.
And then before I went to bed, a thought hit me. The thought was the sentence: "I can do it". Not what in particular it was that I could do, just that sentence. I can do it.
I had thought that in order to turn around all the sadness I would need happy thoughts and happy memories. A positive outlook on the future. But somehow the determination that arose from those simple 4 words was much more effective in making my bad mood disappear, than any happy thing I could force myself to recall. As I thought the words to myself, I began believing that they were true. I can do it. It was a strange sensation of capability to cope with difficult situation, and as the self-confidence in me increased, I began to feel really good about myself, and satisfied with who I am.
I went to bed thinking how weirdly strong a force self-confidence is.
And this morning I woke up with the most precious feeling I have had in a long time. It was the feeling that I love life in itself more than I love anything else. In the past months, I have spent so much time worried about F, and feeling that he is by far the most important thing in my life. I have felt that without him I don't really want to be myself anymore.
I know that this is not a healthy way to think, but the human mind is for some reason constructed so that we feel much more love for something once we get afraid of loosing it. It's something which is bloody hard to work around and change, and even though I have tried very hard in the past few months to create good things in my life that have nothing to do with F, and which make my life meaningful even if he is not here, it is just so impossible to let go completely of the feeling, that I can't be without him.
That's why I felt such a relief from the abnormal feeling that life is important and wonderful in itself, no matter who I am sharing it with.
I did some yoga, as I often do these days, really enjoying the feeling of using my body as the incredible tool it is. Feeling myself being alive. I stood in front of the mirror, all naked, and looked at myself thinking: "this is me, I am here now, I am healthy, I am alive, I am young, I have so much potential". Appreciating my body for what it was, flaws as well as perfection in its own way. There is so much to learn about this world and about the human mind and myself. At the age of 23 I feel like I have so much potential in that I have so many years left to live, and so much good in my life to look forward to. But I also feel that I have so little experience with what an adult life entails, that in some way I cannot appreciate the potential properly, just because there is so much I don't understand about the world and myself.
But regardless, it was just such a nice feeling to be at peace with who I am for once, and feel that being who I am is enough to be happy.
I have no doubt that this transformation is only temporary, that I have plenty of difficult experiences yet to face, that will upset me and bring me to tears. And I have no doubt, that should F take a turn for the worse I won't feel strong and alive on my own. But with such a hard time going on at the moment, I have to appreciate the moments where I feel capable and happy with myself.
The little victories become so important.
L
I managed to do something different this morning. Something different about my mood. All of yesterday afternoon and evening I was just so incredibly sad. I missed F like I have never missed anyone before, and just felt hopeless and unable to stop the tears from falling ever so often.
And then before I went to bed, a thought hit me. The thought was the sentence: "I can do it". Not what in particular it was that I could do, just that sentence. I can do it.
I had thought that in order to turn around all the sadness I would need happy thoughts and happy memories. A positive outlook on the future. But somehow the determination that arose from those simple 4 words was much more effective in making my bad mood disappear, than any happy thing I could force myself to recall. As I thought the words to myself, I began believing that they were true. I can do it. It was a strange sensation of capability to cope with difficult situation, and as the self-confidence in me increased, I began to feel really good about myself, and satisfied with who I am.
I went to bed thinking how weirdly strong a force self-confidence is.
And this morning I woke up with the most precious feeling I have had in a long time. It was the feeling that I love life in itself more than I love anything else. In the past months, I have spent so much time worried about F, and feeling that he is by far the most important thing in my life. I have felt that without him I don't really want to be myself anymore.
I know that this is not a healthy way to think, but the human mind is for some reason constructed so that we feel much more love for something once we get afraid of loosing it. It's something which is bloody hard to work around and change, and even though I have tried very hard in the past few months to create good things in my life that have nothing to do with F, and which make my life meaningful even if he is not here, it is just so impossible to let go completely of the feeling, that I can't be without him.
That's why I felt such a relief from the abnormal feeling that life is important and wonderful in itself, no matter who I am sharing it with.
I did some yoga, as I often do these days, really enjoying the feeling of using my body as the incredible tool it is. Feeling myself being alive. I stood in front of the mirror, all naked, and looked at myself thinking: "this is me, I am here now, I am healthy, I am alive, I am young, I have so much potential". Appreciating my body for what it was, flaws as well as perfection in its own way. There is so much to learn about this world and about the human mind and myself. At the age of 23 I feel like I have so much potential in that I have so many years left to live, and so much good in my life to look forward to. But I also feel that I have so little experience with what an adult life entails, that in some way I cannot appreciate the potential properly, just because there is so much I don't understand about the world and myself.
But regardless, it was just such a nice feeling to be at peace with who I am for once, and feel that being who I am is enough to be happy.
I have no doubt that this transformation is only temporary, that I have plenty of difficult experiences yet to face, that will upset me and bring me to tears. And I have no doubt, that should F take a turn for the worse I won't feel strong and alive on my own. But with such a hard time going on at the moment, I have to appreciate the moments where I feel capable and happy with myself.
The little victories become so important.
L
Sunday, 9 March 2014
The art of putting someone else before yourself
Dear world,
It's so hard. Learning to put someone else's needs in front of your own. From the earliest childhood we have to learn that we are not the only one in the world, who wants to get things done their way. We learn to share our belongings and to be nice to our fellow people. To do each other favours, even if it means doing something we don't particularly like to do.
Most of us probably don't learn what it really means to put someone else's needs in front of our own, before we have children. 'Cause it's hard to do. It's so easy to get mad and upset and spiteful when you feel the world is being unfair or someone isn't caring enough about your needs, or things just don't go the way you want them to.
For me, this cancer has certainly been an exercise in silencing the voices in my head, that scream for attention when things are hard.
Because I know, I KNOW, that things are 10 times harder for F. He is the one who gets to feel the side effects, who has all this happening to his body. He must deal with the fear of the future and his own fragility in a whole different way than I must.
And I don't want to be another burden on his mind, complaining about how hard the situation is for me. I want to be as big and as solid a support to him as I possibly can.
It's a balance, cause he also finds comfort and strength in still having the role of 'my boyfriend' and in being my rock when my work is hard etc. It helps him to feel normal, helps him to feel like I still need him, and don't just stay with him out of pity. Makes him feel like he is still able to do something to help.
So I tell him when I am tired and upset with my studies, or if something happened with a friend. And I tell him that I miss him here in Oxford, and that I am sad he is not here with me.
But if I really showed him how much his cancer and treatments affect me, I will throw off the balance. I will add a lot to his worries. I will put my own needs in front of his, to an extent that is just not okay, the situation taken into account.
So I try to keep it in, to swallow my sadness and my disappointment. I don't always succeed. It's hard when he's there in person. My tears run like waterfalls at the smallest emotions these days, and betray me. It's easier when I'm on the phone with him.
But it's hard on me to do so. Put someone else in front of myself to this extent. It's not somethings I'm used to. And a relationship is supposed to be equal: you are there for each other equally much, share the same roles, support each other. The cancer twists this around. Suddenly there is one big thing in our relationship that just tilts everything to the side.
Take for example the situation that happened a couple of days ago. F had been talking for weeks about the possibility of him coming to visit me here in Oxford, just for a day or two. His newest treatment is much milder for his immune system, so he is not as much at risk of catching infections as he was with the previous treatments. So his doctors had said that he would be allowed to go visit me, and F said he wanted to go sooner than later, in case they changed his treatments again.
You have to understand how much this would mean to me. I spend a whole year looking forward to living next to F this year. We made plans of all the things we were going to do together, I was so excited by the prospect!
And now I live here on my own, wake up every day in my double bed, reminded that he's not lying there next to me. I cook on my own, while the other couples in my corridor sit together and eat, fingers entwined. Every day, I walk past the door to the room that was supposed to belong to F. I see that door that has become haunted to me. And I just miss him. He has not been here once. He has not seen the room I am living in, how I decorated it, or put up the pictures of me and him. I have mostly accepted that this is just the way things are. But if he could come visit me, just for one day, then we could cook together in the kitchen like the others and we could sit with out fingers entwined, and we could wake up in my bed together for once, and walk by the ghost door hand in hand. It would not make up for a whole year apart, but it would mean so so much to me.
So when the doctors said that F could visit, I was thrilled. And so was he! Up until a couple of day before he was supposed to come visit.
We had never made the plans completely final, since they depended on his and my health at the time. But we planned the visit, and talked so much about what should happen.
And then a few days before, he told me he couldn't come after all. He was afraid that he might catch an infection on the public transportation, and his parents couldn't drive him (none of us have a licence). Even though he was at lower risk of catching an infection with this treatment, he didn't want to take that chance, since we don't know whether the treatment is working, and he wanted to do everything he could to make sure it is working and that he can get the chemos at the right times.
So he didn't come visit after all.
When he told me those news, I just got so disappointed. It was the one thing I had been looking the most forward to in those days, and I just felt like such a big thing was taken away from me. I got so frustrated that once again I had to set aside my own expectations and excitement and wishes for the sake of him not catching a cold. And please don't get me wrong: Of COURSE I want more than anything for him to get healthy. I would give anything in this world to know that his treatments are working, I would do anything I could, if it raised his chances by the tiniest bit. That is why I told him, that I was absolutely okay with this, and that I would obviously miss him, but his health came before anything else. And I meant it when I said it, and I have meant it every second since then. I would only want him to visit if his doctors said that it was a good idea, and he really wanted to himself.
But I just couldn't help feeling overwhelmed with disappointment. I really needed to see him, needed him here to comfort me and be there for me, and those needs just had to become a second priority. I wish I could say that I had no problem setting aside my own wishes for him, but that's not the case. I find it so hard to let go of the self-pity when the world is a bit unfair to me.
I don't want to tell him how upset I was that he didn't come, cause I didn't want him to feel like he was letting me down. None of this is his fault! It is the damn cancer's fault. So I don't want him to feel like I am blaming him.
But I struggled to bite my tongue and relax my voice as I told him that I was absolutely okay with him not visiting, that I was sad it wouldn't be a possibility now, that I would miss him, but that his health was much more important.
I guess it's just something you have to lean slowly. You can't become a master of your own mind, controlling your own emotions and learning to be completely selfless, overnight.
Hopefully, being aware of it and trying to do a bit better every time is the first step.
L
It's so hard. Learning to put someone else's needs in front of your own. From the earliest childhood we have to learn that we are not the only one in the world, who wants to get things done their way. We learn to share our belongings and to be nice to our fellow people. To do each other favours, even if it means doing something we don't particularly like to do.
Most of us probably don't learn what it really means to put someone else's needs in front of our own, before we have children. 'Cause it's hard to do. It's so easy to get mad and upset and spiteful when you feel the world is being unfair or someone isn't caring enough about your needs, or things just don't go the way you want them to.
For me, this cancer has certainly been an exercise in silencing the voices in my head, that scream for attention when things are hard.
Because I know, I KNOW, that things are 10 times harder for F. He is the one who gets to feel the side effects, who has all this happening to his body. He must deal with the fear of the future and his own fragility in a whole different way than I must.
And I don't want to be another burden on his mind, complaining about how hard the situation is for me. I want to be as big and as solid a support to him as I possibly can.
It's a balance, cause he also finds comfort and strength in still having the role of 'my boyfriend' and in being my rock when my work is hard etc. It helps him to feel normal, helps him to feel like I still need him, and don't just stay with him out of pity. Makes him feel like he is still able to do something to help.
So I tell him when I am tired and upset with my studies, or if something happened with a friend. And I tell him that I miss him here in Oxford, and that I am sad he is not here with me.
But if I really showed him how much his cancer and treatments affect me, I will throw off the balance. I will add a lot to his worries. I will put my own needs in front of his, to an extent that is just not okay, the situation taken into account.
So I try to keep it in, to swallow my sadness and my disappointment. I don't always succeed. It's hard when he's there in person. My tears run like waterfalls at the smallest emotions these days, and betray me. It's easier when I'm on the phone with him.
But it's hard on me to do so. Put someone else in front of myself to this extent. It's not somethings I'm used to. And a relationship is supposed to be equal: you are there for each other equally much, share the same roles, support each other. The cancer twists this around. Suddenly there is one big thing in our relationship that just tilts everything to the side.
Take for example the situation that happened a couple of days ago. F had been talking for weeks about the possibility of him coming to visit me here in Oxford, just for a day or two. His newest treatment is much milder for his immune system, so he is not as much at risk of catching infections as he was with the previous treatments. So his doctors had said that he would be allowed to go visit me, and F said he wanted to go sooner than later, in case they changed his treatments again.
You have to understand how much this would mean to me. I spend a whole year looking forward to living next to F this year. We made plans of all the things we were going to do together, I was so excited by the prospect!
And now I live here on my own, wake up every day in my double bed, reminded that he's not lying there next to me. I cook on my own, while the other couples in my corridor sit together and eat, fingers entwined. Every day, I walk past the door to the room that was supposed to belong to F. I see that door that has become haunted to me. And I just miss him. He has not been here once. He has not seen the room I am living in, how I decorated it, or put up the pictures of me and him. I have mostly accepted that this is just the way things are. But if he could come visit me, just for one day, then we could cook together in the kitchen like the others and we could sit with out fingers entwined, and we could wake up in my bed together for once, and walk by the ghost door hand in hand. It would not make up for a whole year apart, but it would mean so so much to me.
So when the doctors said that F could visit, I was thrilled. And so was he! Up until a couple of day before he was supposed to come visit.
We had never made the plans completely final, since they depended on his and my health at the time. But we planned the visit, and talked so much about what should happen.
And then a few days before, he told me he couldn't come after all. He was afraid that he might catch an infection on the public transportation, and his parents couldn't drive him (none of us have a licence). Even though he was at lower risk of catching an infection with this treatment, he didn't want to take that chance, since we don't know whether the treatment is working, and he wanted to do everything he could to make sure it is working and that he can get the chemos at the right times.
So he didn't come visit after all.
When he told me those news, I just got so disappointed. It was the one thing I had been looking the most forward to in those days, and I just felt like such a big thing was taken away from me. I got so frustrated that once again I had to set aside my own expectations and excitement and wishes for the sake of him not catching a cold. And please don't get me wrong: Of COURSE I want more than anything for him to get healthy. I would give anything in this world to know that his treatments are working, I would do anything I could, if it raised his chances by the tiniest bit. That is why I told him, that I was absolutely okay with this, and that I would obviously miss him, but his health came before anything else. And I meant it when I said it, and I have meant it every second since then. I would only want him to visit if his doctors said that it was a good idea, and he really wanted to himself.
But I just couldn't help feeling overwhelmed with disappointment. I really needed to see him, needed him here to comfort me and be there for me, and those needs just had to become a second priority. I wish I could say that I had no problem setting aside my own wishes for him, but that's not the case. I find it so hard to let go of the self-pity when the world is a bit unfair to me.
I don't want to tell him how upset I was that he didn't come, cause I didn't want him to feel like he was letting me down. None of this is his fault! It is the damn cancer's fault. So I don't want him to feel like I am blaming him.
But I struggled to bite my tongue and relax my voice as I told him that I was absolutely okay with him not visiting, that I was sad it wouldn't be a possibility now, that I would miss him, but that his health was much more important.
I guess it's just something you have to lean slowly. You can't become a master of your own mind, controlling your own emotions and learning to be completely selfless, overnight.
Hopefully, being aware of it and trying to do a bit better every time is the first step.
L
Friday, 28 February 2014
The length of time
Dear world,
6 months have passed since we got the horrible news about F. 6 months!
Exactly half a year ago, I was sitting in his parents house, thinking how strange it was to be spending time with his parents and sleeping in his bed, without him there. It's been 6 months, and I'm still not sure I have completely understood what happened.
When you are diagnosed with such a serious disease, the doctors and nurses and help-organisation-people etc. tell you a lot of things of what to expect. They tell you about the treatment plans and about side effects. They tell you how the illness may affect your relationships with the people closest to you and what type of changes you may need to make in your life. They give you all the facts that they can.
Well one thing they can't tell you is how long time 6 months is! How it just keeps on going and going and going. You don't know what's going to happen, you don't know how it's going to end, you don't know when there will be good days and when there will be bad. You wake up every single morning, and the same feeling is just there: the feeling that something is wrong but you have to just continue with your life.
So you do that. You force yourself out of bed, you make breakfast and shower, because you know that these things need to be done. So you might as well do them, just to stay active. Some days it's easy, and you enjoy having something to do, you may even have plans coming up that you look forward to. Other days it's a battle to get out of bed, because you can't remember what the point really is. You do your job, you go shopping, you cook dinner, you check your email, you wash your clothes, you open the letters from the bank. But ever so often the feelings arise again. The feelings that you can't influence what really matters. The feelings that there are such crucial things you don't know yet. Feelings of pointlessness and helplessness. Ever so often it becomes a battle to just pass though life and make time go by. Ever so often you realise that what you are really trying to achieve the most, is to get to the point where you know for sure whether he is going to be alright.
Patience really is one of the hardest things to learn. Cancer proves that to you. Cause you don't have a choice: the only option is to be patient. If you can't be patient, then too bad for you: the world won't tell you how it's all going to end. It just seems to stretch on forever. And 6 months is a long time!
In my particular case, we are currently no further than we were 6 months ago. F has just started on a new chemo-drug, and hopefully this one will work. Assuming it does, he is looking at 4-6 months of chemo, followed by a stem cell transplant and possibly some radiation as well. That is the exact same outlook the doctors gave us half a year ago. It can be so unbelievably frustrating to not move forward at all. And there is just nothing to do about it, you have to just keep going, keep living your life, keep waiting.
How do you learn to be patient? You fill your life with other things that take your mind off what's difficult. And that's easier said than done. When you are waiting for such crucial news, the biggest temptation is to just put your life on hold, and really indulge in the waiting and brood over the outcome. It would be so easy to just forget about work and forget about hobbies and forget about catching up with friends, and just succumb to a state of constant waiting and worrying. To let the cancer take up the vast majority of your thoughts.
And I have no doubt that that would be a sure way to get a depression!
No, you have to spend every day forcing yourself to add meaning to your life. Meaning in the form of things that are completely unrelated to the cancer. No matter how pointless your studies or work may seem compared to the people you care about, it is important to keep working, keeping that part of your life alive and interesting. Forcing yourself to consider the little issues and victories that go with the work, and thereby feeding your brain distractions from the cancer. Meeting up with friends and talking about trivial everyday stuff. The more stuff you can fill your head with, which gives your life meaning regardless of how the cancer progresses, the easier it is to get distracted from the waiting, and to accept the uncertainty. The easier it is to be patient.
I am not sure how well I am succeeding in this. My grades have dropped quite a bit compared to last year, but at least I am still studying, and still aiming to finish on time. I spend less time with friends now than I did a year ago, but that may also just be due to circumstances having changed and friends having moved further away. There are many days where I push myself a lot, and with a good result. Days where I am active and constructive and feel happy and determined and strong. But there are also many days where nothing seems to matter to me and my mind seems to be covered in a sad mist that just makes it impossible to really care about being strong and moving forward. Days where I question my own mental health and where happiness and contentment just seem to be impossibly far down the road.
I guess all you can do is take it day by day, and learn to be patient and give your life meaning for what it is worth today.
L
6 months have passed since we got the horrible news about F. 6 months!
Exactly half a year ago, I was sitting in his parents house, thinking how strange it was to be spending time with his parents and sleeping in his bed, without him there. It's been 6 months, and I'm still not sure I have completely understood what happened.
When you are diagnosed with such a serious disease, the doctors and nurses and help-organisation-people etc. tell you a lot of things of what to expect. They tell you about the treatment plans and about side effects. They tell you how the illness may affect your relationships with the people closest to you and what type of changes you may need to make in your life. They give you all the facts that they can.
Well one thing they can't tell you is how long time 6 months is! How it just keeps on going and going and going. You don't know what's going to happen, you don't know how it's going to end, you don't know when there will be good days and when there will be bad. You wake up every single morning, and the same feeling is just there: the feeling that something is wrong but you have to just continue with your life.
So you do that. You force yourself out of bed, you make breakfast and shower, because you know that these things need to be done. So you might as well do them, just to stay active. Some days it's easy, and you enjoy having something to do, you may even have plans coming up that you look forward to. Other days it's a battle to get out of bed, because you can't remember what the point really is. You do your job, you go shopping, you cook dinner, you check your email, you wash your clothes, you open the letters from the bank. But ever so often the feelings arise again. The feelings that you can't influence what really matters. The feelings that there are such crucial things you don't know yet. Feelings of pointlessness and helplessness. Ever so often it becomes a battle to just pass though life and make time go by. Ever so often you realise that what you are really trying to achieve the most, is to get to the point where you know for sure whether he is going to be alright.
Patience really is one of the hardest things to learn. Cancer proves that to you. Cause you don't have a choice: the only option is to be patient. If you can't be patient, then too bad for you: the world won't tell you how it's all going to end. It just seems to stretch on forever. And 6 months is a long time!
In my particular case, we are currently no further than we were 6 months ago. F has just started on a new chemo-drug, and hopefully this one will work. Assuming it does, he is looking at 4-6 months of chemo, followed by a stem cell transplant and possibly some radiation as well. That is the exact same outlook the doctors gave us half a year ago. It can be so unbelievably frustrating to not move forward at all. And there is just nothing to do about it, you have to just keep going, keep living your life, keep waiting.
How do you learn to be patient? You fill your life with other things that take your mind off what's difficult. And that's easier said than done. When you are waiting for such crucial news, the biggest temptation is to just put your life on hold, and really indulge in the waiting and brood over the outcome. It would be so easy to just forget about work and forget about hobbies and forget about catching up with friends, and just succumb to a state of constant waiting and worrying. To let the cancer take up the vast majority of your thoughts.
And I have no doubt that that would be a sure way to get a depression!
No, you have to spend every day forcing yourself to add meaning to your life. Meaning in the form of things that are completely unrelated to the cancer. No matter how pointless your studies or work may seem compared to the people you care about, it is important to keep working, keeping that part of your life alive and interesting. Forcing yourself to consider the little issues and victories that go with the work, and thereby feeding your brain distractions from the cancer. Meeting up with friends and talking about trivial everyday stuff. The more stuff you can fill your head with, which gives your life meaning regardless of how the cancer progresses, the easier it is to get distracted from the waiting, and to accept the uncertainty. The easier it is to be patient.
I am not sure how well I am succeeding in this. My grades have dropped quite a bit compared to last year, but at least I am still studying, and still aiming to finish on time. I spend less time with friends now than I did a year ago, but that may also just be due to circumstances having changed and friends having moved further away. There are many days where I push myself a lot, and with a good result. Days where I am active and constructive and feel happy and determined and strong. But there are also many days where nothing seems to matter to me and my mind seems to be covered in a sad mist that just makes it impossible to really care about being strong and moving forward. Days where I question my own mental health and where happiness and contentment just seem to be impossibly far down the road.
I guess all you can do is take it day by day, and learn to be patient and give your life meaning for what it is worth today.
L
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