Ten years

Today, ten years ago, a close friend of mine passed away from a benign brain tumor. That was when I learned that 'benign' did not mean 'nothing to worry about'. It's also the first time I understood what tumors entailed. And it was when a darkness I had never known before entered my life. I still carry so many scars from that day, and the months that followed. But I've fought hard to stop them from being open wounds. The 15th of every month used to be a struggle. Today I feel more sad than dark. I wonder what kind of an amazing woman she would have been. I miss you Effie. I carry you with me everywhere. And don't think for a minute that I've forgotten about you.

Tomorrow we're going to the hospital for my mum's regular three month check up. We see the oncologist and he gives us a status report. I don't think any of us are expecting to hear anything but bad news. Life is a struggle. And it doesn't get easier. It's always terrifying going for these checks. After, no matter what the news, we can relax and push on for another three months. It means we've survived another three months and are ready for the next ones.

I'm sleeping in my room at my parents house. I need the comfort of being close. Being home. I love my flat. But on nights like these there's no other place I can be.

Ten years. And I'm back in the hell I was in then. It's strange though. This time it's so much closer. But I'm not as dark. But trust me. It's a constant battle to not go down that road and embrace the dark that was my best friend for so long.

Pretending

Lying in bed having long conversations with myself. Can't sleep. I'm going through what I need to get done at work tomorrow. I'm planning what we're doing in two weeks when I'm going on holiday. I'm reenacting conversations with other people from a life time ago. Thinking about Malta. What the kids I worked with in Ecuador are doing now, seven years later. Going through every hole on the golf course and where I'd want my tee shots to go.

Thinking about anything.

Except the words I were told today.
"It has spread to more organs."
There's not much untouched left.

Face on

On days like today it is difficult to pretend everything is fine. When you see your mum struggling with every movement she has to make When she's cuddled up in blankets and still shivering because she's so cold. When she can barely keep her eyes open because the medication and the disease are making her so tired.

On days like these it hurts to watch her. It's hard to be around her. But that's when you know that you have to be. Because no way is she going through this alone. No matter how painful it is to watch. And no matter how much you want to just run away and hide somewhere far far away.

We're in this nightmare together. And I am so so scared. But I will not turn away.

Putting up a shield

On the outside I might seem fine. I plan holidays. I laugh. I joke. I go to work. I go to bed in the evening. And I wake up in the morning. And most days I don't mention the darkness. Most days people who don't look properly wouldn't know.

But inside. I might be talking to you like nothing's changed. I might seem like the same person I was a year ago. But inside. Inside I am falling apart. I am angry. I am sad. I am furious. I am so pissed off I don't know what to do with myself. I am so angry with the world I don't know what to say. Or how to formulate myself. What kind of world do we live in? There is no rhyme or reason for anything. Nothing makes any sense. And everything. Everything, is unfair and unjust.

But I keep it inside. Because I don't know what else to do. If I was to let it out. If I was going to show you. Then I don't know if there's any way back. So instead I put up a shield. I wrap myself in this blanket of denial. And I live my life in a world where I pretend that everything is fine. I pretend that the actual reason why I'm back in Sweden isn't that my mum is dying.

In three weeks it's been one year. I can't believe we've lived with this for a year. I don't want to do this anymore. I don't want to. I want to wake up from this ridiculous nightmare. This joke someone is playing on us. Please just let me wake up.

I haven't let myself fall apart like this in a very long time.

I might look okay on the outside. But I feel like a shell of my former self.
I'm scared the world will never be colourful again.

Relax

We celebrated with buying piles of cake and eating them at 11am. I don't think anyone of us had dared to hope. We all assumed the worst. I certainly did.

But medicine has done its wonders. And it's gone in the right direction. It isn't curable. We know that. But for now we've won a small (or massive) victory. Today we've been able to relax. Tonight we will sleep. Because we said a loud FUCK YOU to cancer today.

The verdict

I don't think I've ever dreaded a day as much as I'm dreading tomorrow. If I don't fall asleep, will that avoid tomorrow from coming? Tomorrow we will get the verdict. If it worked or not. Not that it can ever work in the way we want it to. But I guess everything is relative. Even this.

In English people sometimes say 'I'm scared to death.' the Swedish equivalence is 'scared for my life'. My mum said that earlier today about tomorrow. And usually when those words are used they aren't literal. Rarely people are actually scared for their lives. In this case it couldn't be more literal. I'm scared for her life. I'm terrified to the extent that I'm not quite sure what to do. I've written earlier about living in my bubble of denial. Now that's getting more difficult. But I still avoid thinking about it. If I let myself do that I can feel myself falling apart.

I really really really don't want tomorrow to come. While I'm so grateful I'm home so I can be here for this, a part of me wishes I was still in London. Then I'd be far away from this nightmare.

The thought of falling asleep and having to go to the hospital tomorrow makes me nauseous. Why did this have to happen to us? To her? I am so angry. And sad. I am really sad.

My goal tomorrow? To not faint. That's what I (almost) did when we were there in June.

You mean the world

Usually the days are good. And we get on with it. Our daily life. The difference being that I am home and that my mum is home. Other than that everything is normal.

But then days like today happen. I took my mum to chemo today in the morning. And I went back home, had breakfast and got ready for my day. Then I went to get my mum from chemo four hours later. And then we had lunch. And now, an old friend is here. She's the mum of a childhood friend of mine. I haven't seen this friend for years and years. We grew up on the same street. There were lots of kids my age on our street when I was growing up and she was one of them. We played a lot when we were really young. And drifted apart when we started school since we ended up in different classes. But her parents have lived on our street for as long as we have. We wave when we pass each other in our cars. And we say hi if we walk past each other. But that's the kind of street we live on. A wonderful, quiet street where quite a few people have lived for a long time. Couples who moved here when they started families in the middle of the -80's. Now most of these homes are occupied by parents whose children have moved out. It's a good street. And at moments like this I realise it even more.

Because this woman, my friend's mum. She heard about my mum from her husband who ran into my mum one day a few weeks ago. And now she's here. Because as she said when she walked in the door. "We don't have much contact now the kids are grown. But we're here. And we want to be here." And now they're sitting in the kitchen talking. And my mum is telling the story from the very beginning. From being ill in May to being diagnosed in June to today. And what's to come. And I'm sitting in my room. And I can hear them talking. And yes. I'm eavesdropping. I don't want to. Because I enjoy my little bubble. But just as I know how important it is for my mum to keep on repeating the story as a way of processing it all. It's good for me to keep on hearing it as a way for me to process it. And once again I heard her repeat what the doctors told us on that very first visit. "It has spread. We can't operate. Radiation is not an option. There is no cure." Those horrible, horrible words that sometimes out of nowhere pops into my head. 

Since all of this happened I've realised how unfair the world is. My mum's guest just asked if they know why it happened to her. And my mum replied that in 9 out of 10 cases of cancer in the stomach it is purely bad luck. 

But I've also learned how amazing my family is. And how amazing people around my family think my parents are, and especially my mum. There is such a huge network around us. Colleagues. Family. Extended family. Old friends. New friends. My friends. My brother's friends. Distant friends. Everyone is being so wonderful and fighting this with us. I hope you all know how much you mean to us, to me. I don't know how I would react if someone I knew was going through what we're going through. Because it's a difficult situation. how do you face someone who is dealing with this kind if thing? But everyone is being amazing. And honest. And open. So please, continue being the wonderful people that you are. You are doing everything right.

Sentences I've come to hate

Everytime I hear my mum say the words "we know there's no cure" it kills me a little bit.

Denial as the best defence

Things are getting personal. I realise that. And I will sometimes dump very personal stuff here. I don't write about these things anywhere else. And most of my thoughts on all of this I do not formalise. They're just in my head. But sometimes I need to get it ouf of my system. Written down somewhere. And I want people to know how I am. People who might read this blog. Friends. Because I do not write about it that much in e-mailes or messages. Because as you can see, I'm denying it all. And who knows, maybe someone else in a similar, horrible, nightmare'ish position will read this and know they're not alone. We're all in this together. Fighting this monster.

It's terrifying. Absolutely terrifying, to think of the death of a parent. We all know it will happen. It's how it's meant to be. People have children. The children grow up while the parents grow old. Then the children have children. And the parents become the grandparents. And then the grandchildren grow up, while the parents get even older. And then they pass away. At the age of 80 or 90, or sometimes 100. Like my grandfather. My amazing, beautiful knight in shining armor He died the year he was going to turn 90. And he was only sick the last six months of his long and wonderful life. That's how it's meant to be. While the death of a parent must be horrible, and terrifying even at that stage, it's somehow manageable. Because you've been prepared for it your whole life without realising. It sounds horrible. But it's true. And it gives you peace and hope to know that they lived a happy, long life.

My mum will most likely not get that ending. My mum is 54 years old. And she is the most amazing, wonderful, strong person I know. She is my hero. And right now she is fighting an incurable disease. An alien has taken root in her body, in her stomach, and is slowly fighting its way through her body. It's reached her pancreas. Her lungs. Her skeleton. And her liver. She is doing chemotheropy. We are going to halt it. So we get more time. Because according to the doctors that's all we can hope for. And that is all we want, isn't it? Everyone? We all want time with the people that we love.

I moved back to Sweden so that I could be closer to my family. It wasn't the only reason. But it certainly put things in perspective. What's very strange though is how I felt more aware of the cancer when I was in London than I am now. In London I would get panic attacks. I would fall apart completely. I didn't sleep. I would sit in my room, with the lights out and hug myself while crying hysterically. Maybe it was partly because it then was so much fresher. It was new. I was in shock. I was in the first stage. It didn't seem real and I would work myself up by not being able to see my mum every day. I didn't know how she was doing. And I would imagine her ill and weak and sad.

Now I'm home. And while I sometimes question what I've done. Changed my entire life around because of this. I wonder if I was stupid giving up a good job, with great colleagues. Leaving some of my closest friends behind, whom I now miss terribly. Was it the right decision? Of course it was. But it all almost seems more unreal now. I wake up in the mornings. I have breakfast with my mum. We chat. We get on with our days. And she's mum. She sleeps more than she used to. She takes slower walks than before. But she's mum. It's impossible to get it through my head that she is so sick. I just can't do it. And I don't want to do it.

I want to keep living in this wonderful state of denial. Where everything is still okay. Where the events of the 20th of June 2013 doesn't exist. Because in this world it's me and my mum. Spending wonderful quality time together. Like a lovely long vacation. I'm not unemployed living off my parents. And she does not have a giant tumour in her stomach. It's just us. Like normal. Because everything else is too hard. It is too painful. And it is too terrifying. I cannot picture a world without my mum. I do not know how that world would look like. It would be a cold, lonely and dark place. A place I cannot go. That's not an option. So I live in this world of denial. Because right now it is the best I got. It's the only thing I have.

I'm worried that I will get ripped out of this world soon though. Because we are getting eerily close to the end of chemo. Fifth round tomorrow and Thursday. And then one more round two weeks later. And then we'll get to know if it worked or not. If it's halted, or if it's continued spreading.

I hope it worked. I really really really realy hope it worked. But I'm scared. I'm absolutely terrified.

My hero

It's working quite well so far. Me, the unemployed. My mum, on sick leave. I know it's only been a week. But still.

I am loving getting to spend some serious time with my mum. And I am so glad that I can be at home. Because the option would have been to come home more frequently as she gets more sick. Because that's generally how people work. When things get really bad you rush home. But now, my mum isn't really sick. Chemotherapy isn't causing too many problems. It's still my mum that I find myself looking at. Taking in. And that I can be here at this stage makes me happy. The bad will come eventually, but that means I've still been here for the not as bad. For that, I am grateful.

She just completed her fourth round of chemotherapy today. And this afternoon her and I are going on an excursion since we have the car. Her idea, not mine. She is absolutely incredible. My hero.

Mamma

It's strange. When something unthinkable and horrible happens to people. Something that has a huge impact on their lives they often say that they don't understand how life seems to go on as if nothing has happened. They sometimes say it's as if they are playing pretend in the real world that everything is fine. While at the same time their world is falling into little pieces.
I think it's the other way around. When I talk about my mums cancer (there you go. First time I've written those words on here), I feel as if I am playing pretend. When we discuss treatments, tumors sizes and side effects of chemotherapy, it's as if we are all playing a really horrible version of pretend. Because surely this can't be happening to us? Then when we stop talking about it and instead discuss yesterday's round of golf we are back to normal life. Stopped pretending everything is horrible, and sad, and painful.
We go back to being the loving, quirky, wonderful, healthy family that we have always been. Because surely, when we talk about which organs that have been affected. Or when we discuss how to fit as much normal life as possible in around her treatments. Surely that's not my mum we're talking about? It can't be. She's going to live to be a hundred. And love and spoil and play with her grandchildren. And retire and move to that beautiful Italian house they bought last summer.
My mum can't be sick. Surely that's all just one evil game of pretend? A really cruel prank someone is playing on us?