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

Sunday 16 February 2014

The possibility of the impossible

Dear world,

One of the hardest things in life must be to learn to accept that we cannot predict the future. That no matter how hard we try to protect ourselves, we cannot completely eliminate the risk of an accident occurring or misfortune striking. We just cannot be 100% sure that we will be here a year from now. Or 10 years from now. Or tomorrow for that sake.

As children we never really question the fundamental things in our lives. We don't wonder whether our parents will manage to feed us in the evening. Or whether they can pay the mortgage so we can stay in the house. We just take the necessities for granted. And take the people around us for granted. Sure, kids get scared when they learn that people can "die" or hear about "accidents" etc. But most of the time we live in blissful ignorance, never really worrying about something happening to the people closest to us, never really understanding that something could happen to us, never really expecting to grow up.

But we do grow up. And growing up means realising that these things not only do happen to other people they actually can also happen to someone you know. There's a big difference between knowing that bad stuff in theory could happen to you too, and really understanding that it could happen to you too. Growing up means realising this, and accepting this. And that is damn well easier said than done.



6 months ago, F was diagnosed with cancer. Hodgkin's lymphoma (cancer in the lymph system), stage 2b with an additional 11*10*4 cm mass in the mediastinum. That's what the doctors said to us. Those were the codewords they used to label it with. They explained it to us, told us how the lymph nodes are part of the immune system, and how the cancer can spread very easily from lymph node to lymph node. They explained how it was good that the cancer only existed above the diaphragm, and that it hadn't spread to any other organs, such as the lungs or the bone marrow. They said how there are 100's of lymph nodes in the human body, and therefore it would be impossible to surgically remove this type of cancer, but survival rates for chemotherapy were very high. They said that F was lucky to be so young, that his body would have the best chances of pulling through this.

I can't even begin to describe what went through my head when they bit by bit, over the course of 3 weeks, gave us these news. The initial thinking that he just had a bad lung infection, that needed hospital care. The doctors beginning to mention the possibility of it being cancer. The week long period of waiting while the doctors thought it "almost certainly is lymphoma, but we can't say for sure until the last test-results come back". Finally, when F called me that day in September to just confirm that the final tests were positive, and it definitely was Hodgkin's, I was not surprised at all. We all new that we would get this news.
And still, it just changed something in me to put a label on it. My boyfriend has cancer. My boyfriend has lymphoma, he has cancer. I am the girlfriend of a cancer patient. It was just not part of my identity. I never thought I would be one of those. That F would be one of those. I knew many people who'd had cancer, parents of my friends, friends of my parents, older people. I even knew of a girl at my huge school, my own age, who'd had cancer. But I didn't know her. Had I considered the possibility that I or F may get cancer one day? Of course. Had I considered that it may happen to us at a young age? Yes, you are always aware that with these things there is no guarantee, so it may just as well happen to you. Was I stunned that it actually did happen? Of course I was! Because you never really consider that it may happen to you. You process it as a theoretical possibility, but not a real possibility. You don't let the possibility sink in.

You know that feeling, when you wake up from a really bad nightmare, a terrifying one, and you're completely freaked out, and then you realise it was just a bad dream. You realise that you're free from whatever the nightmare threw at you, you still have what you thought you lost. The relief that comes with the realisation.
The strongest feeling I had, in the days when I learned that F had cancer, was the lack of that relief. Those few seconds after you wake up, where your brain searches for an explanation as to why you are so scared, searches for the answer: "It was just a dream". To me, those seconds became minutes and hours and days. "How can this be happening to us", "what have I misunderstood, that will make it all go away", "is there no way this could still be a dream?". I desperately looked for an answer to why I was so terrified of the world. One that was not: "your boyfriend is freakin fuckin ill!"
And nothing came. No other explanation, no other answer. No feeling of relief, when realising that it was just a dream. I just kept desperately searching, and the fear kept stretching on. And on and on and on.

Sometimes I still get that feeling. It's been half a year since we heard that he has fucking cancer. And still, I sometimes get surprised by the truth. Like when I think of some old memory of him and me, together in Oxford, and it hits me that that boy, who said those sentences or did those things, he already had the cancer growing in him. He had no idea that just months later he would be given horrendous news. I dream of going back, just having a single evening with him, in his old house where he lived last year, his old room, and not think about cancer or chemotherapy, not even having it in the back of my head. Of just talking about normal young-people stuff, and be so carefree. Of having him healthy and well beside me. I would give anything for an evening like that. Shit I miss it. I miss it so burning-holes-inside-of-me-badly. Him joking with his housemates. The slightly awkward feeling when they made some joke about our relationship or some real sex-boy-comment. The wonderful feeling of being a bit immature and not having to worry about survival rates and long-term side effects of the treatments. We were there together, me and him, we really were. Cooking together in his kitchen, with the spices in the windowsill, and the not-too-clean counter that I wiped off and sat on. Him telling me to not do the dishes. The tiled floor. The smell of 6 boys living together and doing a decent effort to clean, but still. The magnets on the fridge, always spelling out ridiculous things.
It was one of the best parts of my life, the visits to his place, and now that time is just over, and we will never again sit together in that living room and watch Game of Thrones and eat spinach pie.

But that's how life is. Things come and things pass, and while it's okay to dwell on them for a moment, you can't spend your entire life looking back on what is no longer. You can just be grateful that you had those wonderful moments in your life, cause that is really what it is all about: creating as many moments of happiness and love as possible!
And F and I still have those moments! We have loads of them! Every time I visit him at his parents' place, where he is currently living while getting treatment. Every time we Skype together. All the little texts we send to each other. We possibly have even more wonderful moments now than we did before, just because we are afraid of losing each other.
Our situation now is just different. Our everyday is different.

F has had to take a year out of university. The chemotherapy-treatments every two or three weeks just don't work with the intense study-life at Oxford. So he lost his accommodation for the year at uni, and is now living with his parents, which is really the best for everybody. His mum has time and energy to take care of him when he needs care, to drive him to the hospital when he has treatments or consultation or tests to be taken, and to keep track of every little detail that the doctors say or write or hint. F prefers to have his mum take care of him when he is feeling really ill, and throwing up. I think he's still a bit shy for his girlfriend to see him so un-charming, and I don't blame him. I would probably feel the same way.
I am still studying, and it's working out alright, even though there is a 3 hour bus/train journey between the two of us. I had never planned on doing long-distance again in my life, but this time we just didn't have a choice. I would have loved to just take a year out, and go live with him and be there to support him. But first of all I think he would get tired from the pressure of entertaining a girlfriend while on chemo (I obviously would not expect any entertainment from him, but I see how he may feel guilty for being the reason I was bored). And second of all, I have come to the conclusion that I really need my degree now! Most of all, because both F and I would blame him (on some level) for the loss of my degree, if I didn't finish. I think it would be a huge blow to the otherwise incredibly strong relationship. It is important for both of us, that the cancer has as small impact on our lives as possible, and that includes my degree. Even if it means spending a year so much apart, while he is going through hell, and every cell in my body screams to help him and comfort him.

And we don't know what the future says. F has been on different chemos over the past 5 months. The second-biggest scare (after finding out that he has cancer), was finding out that the chemo's haven't worked so far. Initially he did 4 months of ABVD treatment, which showed an improvement to start with, but then stopped working. Then he did a month of DHAP after new years, which didn't show any improvements either. Now he has just started a third kind of treatment, an antibody which attacks the Hodgkin's cells. Assuming this works he will need 4-6 months of this treatment, and then either a stem cell transplant or radiotherapy afterwards. Or both.
It's a long prospect. But that's okay. I am okay with it taking months or even years. As long as he survives. As long as eventually one type of treatment works, and cures him of his cancer, so that we again can live together healthily and spend our days on normal things, the way young people should.
I just wish for my F back, more than anything else in the whole world.

One thing is for sure. This whole experience is teaching me some serious lessons about what life is, and exactly what kinds of things can actually happen to you. What kinds of things we have to learn to accept.
Even if we're not quite there yet.

L