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
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