We're at that point

They are stopping all treatments. They are just making her feel bad without actually doing anything. I didn't think we'd get to this point today. I don't think anyone of us did. She's been having good weeks lately. So while I think we weren't expecting good news. We weren't expecting this.

My mum said: "So now we just have to wait."
My response was: "No mum. Now we have to live."

They kept telling us that one day we would get to this point. I just couldn't quite believe that we would.

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.

Things you don't think about

I went to a colleagues surprise leaving party tonight. It was lovely and lots of fun. Since I work at the same place as my mum, and we share the same colleagues this man is obviously her colleague to. I know it broke her heart slightly not being able to have been there. They had their offices next to each other and were very close. Throughout the evening I found myself thinking that she should be there instead of me. Something else I realised, which makes me incredibly sad, is that my mum won't get a leaving party. She is not coming back to work. She is terminally ill. But you don't throw a leaving party for someone who has left due to illness. That would be morbid and very odd. But it's sad. She won't get the speeches. The appreciation. The 'we will miss you'. I've never thought about that before. But today it hit me, and I almost had to walk out in the middle of a speech because I almost lost it. I didn't. But I'm doing it now instead.

She's not getting a leaving party. And that hurts more than I ever thought was possible.

Tears in my eyes

Some days are harder than others. Some evenings are more difficult than others. For no apparent reason. I mean, obviously there's a reason. I'm living with this constant dark cloud not so much on the horizon as looming right next to me. And while I've lived with darkness before I've never experienced anything like this. How could I have. But that means that some days, for no specific reason, are harder than others. Because no human being can live with this constant darkness in their life and not be effected by it. It's difficult. It's painful. And it's horrible. Everything else fades away in comparison.

Some evenings are just harder than others..

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.

1 year

It was midsummer last week. A big holiday in Sweden. People celebrate the longest day of the year. It's one of the happiest celebrations in Sweden. It's like a reward for having survived another dark and long winter. I know a lot of people can't understand, and probably couldn't stand, the winters here. The sun barely rising. Darkness everywhere. But then we have summer. And trust me, it's worth it. Evening when the sun barely sets at all and you can sit outside until early morning. I remember when I worked at McDonalds. I was working the closing shift and we had a really busy night so we ended up not getting out of there until around 3 am. I remember cycling home. The sun having just risen and the birds singing in the trees. It was such a surreal feeling. It was amazing. I love midsummers.

Or at least I used to. This year midsummers eve (last Friday) marked 1 year since our lives took an evil twist. I tried not to think about it but was reminded by kind people who only meant well. But the last thing I wanted to hear was "so, it's been a year now..." A year ago we didn't think we'd be here. Everything was so dark and we had no hope what so ever. I wouldn't say that we have hope now. But we've had a year. Which means that we could have another year. And another one after that. And many more after that. But hope? I don't dare to hope. One day at a time. I know I've said those words before. But I don't think I've truly understood their meaning until now. One day at a time. Currently they're bad days. For her. Which means they're bad for all of us.

1st of September I move to my own place. I will have a sanctuary to escape to. Where I can close the door on cancer. Leave it outside. Even though I know it will follow me around forever.

It's been the worst year in my life. But in a way it's been a good year. It's been a great year. Because she's still here.

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.

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.

The good and the not so good

I don't like this period. The days running up to the next round of chemotherapy. She's so tired. And you can tell she's in pain. Although she tries to hide it. The days during chemotherapy and directly afterwards are much better. Strange how it works, isn't it? Before all of this I would have assumed that during chemo is when a person would be feeling worst. I know it's individual. But still. It surprised me.

Sixth round coming up. The final one for now. One month left until we know the results. That means one more month for me to live in my bubble. One more month of denial . And then it will be thrown in our faces.

Today we celebrated my paternal grandmother. She turns 90 on Tuesday. Ninety years old. That's really old. I want to sit at my mum's 90th birthday laughing and celebrating just like we did today. I'm hoping for a miracle. Come on science. I know you take huge steps in the right direction every day. You can do it.

Happy birthday farmor (as she's known to me. Means 'fathers mother'), you are one hell of a person. Thank you for never getting tired of playing the same board games with me over and over and over again when I was a kid. I will always love you for that.

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.