It's half full. It's bloody well always half full, it's just hard to see sometimes.

by Hilla Duka - View comments

Jonathan splashing around in the water

As spring was approaching we were asked how and when the kids would have annual leave from school, and were informed that Jonathan would not have any kind of day care all summer(up until now the kids have always had as much day care as I would need, but apparently a ten year old is perfectly capable of taking care of himself all day long...). At first I started to freak out and wonder what I was going to do with him all summer - How in gods name was this going to work??? And when I was good and properly stressed out and literally couldn't think straight I took a step back, and surrendered. This sounds quite insane, but I've learned to do this more and more (and I get better at it the more I meditate) - I simply give up trying to make something work out the way I on some level want it to, and just surrender it. I let things fall into place, and they might not arrange themselves the way I want them to, but things generally just work out, which is more than I can say for when I try to bend the world to my will.

All three kids playing in the water

Ok, slight side track there. The point was, I surrendered the nightmare of trying to puzzle together Jonathan's ten weeks off school with my annual leave and what we as a family wanted from the summer. And as soon as I did, I realised that of course I would take the ten weeks off work, because spending the summer with my kids was more important than anything. And it would work out, somehow, because it was the right thing to do. And as it happened, it did work out (partly because it was the right thing to do, and partly because I have an amazing boss and workplace). So now I'm rocking ten weeks of summer with my kids. Absolutely amazing.

Jonathan and Jacob playing in the water

Of course it takes me a while to get into holiday mode, but a few trips to the beach later I am now practically almost not thinking about work, and I don't check my work email more than once a day. Ok, I'm still working on accomplishing holiday mode, but I'm working on it from under a tree, where I'm watching the kids splash around in the water, which is a really good place to work on stuff. Or not work on stuff I mean.

Ilir and the kids roasting marshmallows

And what do I plan to do with this obscene amount of family time? Well, thank you for asking, I intend to take my not-so-little family around Sweden. Because we haven't had a car before, the kids haven't seen much of Sweden apart from where we live, and Ilir hasn't really been anywhere, so now we're going exploring. We're spending a week in Gotland, (which is where the majority of Stockholm goes during the summer so the boys should all feel perfectly at home), and are planning some shorter trips to the Stockholm archipelago, Dalarna and hopefully a day or two in Gothenburg (although we'll probably have to go by train since I doubt the boys will last that long in the car). I'm kind of showing them all how great Sweden can be during the summer, like some sort of Swedish guide. Also, I haven't given up on the idea of getting a summer house somewhere, so that might have something to do with why I've opted for renting cottages all over Sweden this year - I'm sneakily trying to win the rest of the family over to buying a house. Then once summer is over, and we all start reminiscing, it's autumn and the prices on summer houses drops, and bam! - the whole family is on board and we're buying a 150 year old cottage. Did I plan this in way too much detail? 

Milo by the seaside

 

Well, that's how it's going to go down, just as soon as I've had my next checkup (the result comes in in nine days, not that I'm counting or nervous or anything) and the doctor tells me it's all good. "All good, no sign of growth" is what I'm trying to envision her saying. Pleasepleaseplease, let that be what she'll say.

 

The way you worry about checkups as a cancer patient is insane. You worry up until them, you worry during all the tests, and you worry in the space between the tests and your visit with your oncologist, when they'll tell you the result. And then when they say it looks good, you only stop worrying for a little while, then you start all over again. You constantly try to judge how you feel. Are you more tired than normally? Do the metastasis hurt more than other days? Does it hurt in some new place? Is that ache in your back just from sitting in a meeting or is it a different kind of ache? And then you try to not become some hypochondriac... I haven't slept naturally since I found out about the cancer over a year ago - I take a sleeping pill and knock myself out so I don't dream, but if I did - I'd be having nightmares about the checkups.

summer flowers in a field

Anyway, the jury's kind of out on this checkup, I have no clue. On the one hand, I feel ok. That's partly because I recently took some cortisone which is like speed to my body, so for the past week or so I haven't had so much pain in my joints and I don't really walk like a ninety year old lady, but the effects are wearing off and slowly the stiffness returns. Partly, I hope, it's because I'm doing my physiotherapy religiously, and am slowly getting stronger again. On the other hand, I've really been under a lot of stress work wise lately, and haven't really felt like I had a good work / family / me balance. When you don't really know what makes one person stay in remission and another relapse, you start taking anything and everything into consideration. Have I taken my vitamins? Am I in a mindful state of mind? Exercising? I can so completely understand people who start believing in weird stuff going through this. Magic stones? Oh well thank you, why not. Anything that suggests answers, because the fact is that medicine offers no answers and that sucks. 


Weekend in Paris

by Hilla Duka - View comments

 

Ilir in Montmartre by sunset

As Ilir's birthday approached, I wracked my brain to come up with the perfect way to celebrate him. In the past I've tended to forget his birthday (it's June first, which honestly just sneaks up on you when you're busy with May, so really it's not my fault at all), but this year was different, for many reasons. Ilir turned forty, for one thing. I've never celebrated a fortieth birthday before, but I had a feeling it should be a big deal. So for the day, I kidnapped Ilir and took him for an afternoon off work and musts, while my mum and brother picked the kids up and let the caterers in (ordinarily Ilir does all the cooking for birthday dinners, and I wanted him to do no work for the day, hence the luxury of catering).

Catering buffet all set up on the kitchen table

As we toasted to him, the kids told him of our present: "You... And... Mum... Will... Go... To... PARIS!" And so we did. We took 48 hours just for our selves, and went to Paris. For me it was a sweet reunion with a city I love and haven't seen in years, for Ilir it was his first trip there. Paris is an amazing place, but you need to stay away from the touristy places, and at the same time, when you go for the first time you do want to see the sites, at least some. We settled for the Eiffel Tower, the Arc de Triomphe together with a walk down Champs Elysee and the Jardin du Luxenbourg. Oh, and a walk to Sacre Coeur, to see the view of Paris from the top. We tried to not eat close to any of the sites, but had no choice but to sit down for a drink or two as it was really hot and I got tired. 

 

Monmortre by twilight

 

This was our first trip together, just the two of us, and it was amazing to have time together, to realise how much fun we have together.

 

bottle of red wine

 

Ilir normally doesn't drink much, and normally I don't mind, but it was actually so lovely to share a bottle of wine and just sit and chat for hours. Holiday mode accomplished.

 

flowers on a market place in Paris

 

Food market in Paris

We walked past this little impromptu food market, where Ilir got feeling and started raving about fresh ingredients and how you wouldn't find this in Sweden... I suppose he's right in a sense, but at the same time there must be outdoor food markets in Stockholm too, right? Let me know if you've got any tips for me!

Peak of Sacre Coer

 

Sacre Coer

 

Sacre Coeur is so impossibly beautiful, inside out, and the view from the top is breathtaking - I challenged myself to climb to the top, and we got there just as the sun was going down, lending soft, long rays of warm light to the scene. So beautiful.

 

Flower shop in Paris

 

Gorgeous little flower shops - like little pieces of heaven. Magical!

 

sunlight on a Paris street

 

Chasing the light down the picturesque but cute cobblestone streets in Montmartre.

 

The bridges of Paris

 

The next day we went walking by the Seine. We started by Pont Neuf, with no real plan whatsoever, except maybe get to the Jardin du Luxembourg - one of the prettiest parks in Paris.

 

Ilir looking at an olive tree by the Seine

 

Lovely flower shops with old olive trees and sweet smelling lavender filled the streets, neighbouring cold, boring pet shops sadly selling Chihuahua puppies...

 

furniture shop by the Seine in Paris

 

Past little interior decorating shops overlooking the river. I would seriously buy everything in this shop and never redecorate again!

 

Levender flowers by the Seine

 

The kids really wanted some pictures from the Eiffel Tower, and Ilir wanted to see it too, so we steered our steps towards the giant construction, making sure to stop by Jardin du Luxembourg first.

 

Ilir in Jardin du Luxembourgh

 

Palm trees, pools where children sail miniature boats and ordered rows of square shaped trees. Lovely and serene in the middle of the busiest part of Paris, even though it's filled with tourists.

 

The Eiffel Tower from afar

 

And then we continued on to the Eiffel Tower. It was a lovely, warm day, the sun shining and birds chirping, and we settled down on the grass before the giant construction.

 

Ilir in front of the Eiffel tower

 

Goofing around by the Eiffel Tower

 

The obligatory Eiffel Tower photos for the kids...

 

Me by a rose buch in Paris

 

Ilir tried his hand at photography, even though he decided my camera has too many settings...

 

roses by the Eiffel Tower

 

And after a final dinner (consisting of sadly boring food - France is great for ingredients, and if you settle for wine and cheese you eat little pieces of heaven, but the cooking is bland...) we went to prepare for an early start back, at this point missing the kids and thinking two nights away was probably the exact right amount! Two magic days in Paris - I'm so happy and thankful for it!

 

art deco restaurant in Paris


365 days of horror

by Hilla Duka - View comments

Little flower arrangement on a table

It’s now one year since I found out I have cancer. The last few days have been filled with the roaring thunder of my mind, the echoes of storms past and storms to come. Cancer storms. Deadly, all-consuming storms that steal what I’ve worked so hard for, snatch it out of my hands.

 

These days have been filled with the memories of lying on a narrow hospital bed, knowing things were bad, but not how bad. That first surreal feeling, that I was somehow experiencing another person's life, because surely this wasn’t meant for me. Snatches of conversations, sharp as knives in my heart.

“What did you say to them?”

“I told them Hilla has cancer.”

“Oh.”

 

Other, wordless moments, eyes meeting in horror, when there are no words to be said. Hands fumbling for each other, to offer if not comfort then at least a short refuge from the loneliness.

 

Memories of how I raged at this huge, unmanned weapon, without intelligence or compassion, still I tried to reason with it. “I have children!” I argued. “Please, you cannot actually do this to me. I’ve learned my lesson, slap on the hand, I’ll be a better person, honest”. And while I’m still there in that same spot, one year later, and cancer is still without intelligence and certainly without compassion, I’ve learnt that the universe isn’t. I’ve touched a love and caring so deep and profound it has given me strength when I thought I could not go on.

 

This new feeling of being here-but-not-here. Hearing my family talk about me as I half slumber after chemo. “Can she eat? Did she vomit? She looks so weak...” Watching the people I love hurt, and knowing there’s nothing I can do to reassure them.

 

The way my heart shattered every single time I woke up, as I realised again and again that it was true, it wasn’t a bad dream, it was all true and nothing would be the same again. For weeks this went on. I’d wake up and for a second I’d not remember and then it would hit me and it was as if my heart was sucked out of my chest in that instant, and I’d weep and not stop until there were no more tears.

 

Somehow some people loved me enough to stay with me. Not just in the beginning, when all was new and shocking, but through this year and onwards.

 

I didn’t understand then what this year would bring. I would have never thought then that I would be happy again, that I would laugh and love and make plans and look forward to things again. One year has passed, and I’m still here.


 


Death and corsetes

by Hilla Duka - View comments


black and white drawing of little creature going mental at other people's stupidity

I’m meeting a woman at Olmed, an orthopaedic service company working with hospitals, to improve life for people with handicaps. I’m there for a consultation about maybe getting a corset, to help with the pain from the metastasis in the skeleton.

 

The woman I’m meeting: So you’re here to be fitted for a soft corset. It says here you’ve had breast cancer.

Me: Have. I have breast cancer.

She: Then you’ve just recently been operated?

Me: No, I’m terminal.

She: What does that mean?

Me: It means there’s no point in surgery. It means the cancer has spread, it has created metastasis, amongst other places in the skeleton, which is why I’m here to discuss if a corset could help me.

She looks at me as if I just told her I come from another planet. This goes on for quite a while longer than what’s comfortable.

She (finally): I don’t understand. Are you scheduled for surgery? It says here that you’ve had breast cancer. I don’t understand.

Me (possibly a bit more agitated than normally): HAVE. I HAVE breast cancer. I will have breast cancer for the rest of my life. Terminal means I will die from it. There’s no cure and surgery won’t help. Now do you understand?

She (quite disbelieving, challenging me): So you’re going to die? From breast cancer? And when will you be doing that? Well… It doesn’t say that here. It only says breast cancer. (looking quite annoyed at this interruption in her day). Shall we get you fitted then?

 

We don’t talk much more after that. She gets me fitted for a corset, half tosses me a brochure, as if she’s afraid to touch me, or look me in the eyes. As if she could catch it if she gets too close.

 

What I want to say, but obviously I don’t, is this: I hate you for making me spell it out. For making me say the words. I know the deal, but I try not to think about it. Until people like you force me, and then it’s there in my mind, the truth is etched in and won’t let me pretend. I hate you for being ignorant and healthy and I hate you for the fact that I am not. Learn fucking words. Understand what terminal means.

 

And the sad truth is - even nurses and doctors, people who work in healthcare, when informed I have breast cancer assume I've had surgery, assume I'll be ok. They assume that I'm not terminal. Because we have such great medicines, and mammograms and early detection and what have you, and it’s only like 2% of all breast cancer patients who are as young as me and find out so late. But I am one of those 2%. And every time you force me to spell it out it hurts, and I walk around for days with the wound opened again, the grief fresh and sharp. Wounded, exposed, fearful, sad.

 

Today it's one year since my cancer journey began.


black and white drawing of an angry bat


Wish upon a star (or a lash)

by Hilla Duka - View comments

Flower in Fjärilshuset, HagaparkenWhen I was little, I learned to wish upon an eyelash. Basically, like this - if you drop an eyelash on your cheek, you can make a wish and blow away the eyelash. If it flies away, your wish will come true. (Don't try this with mascara heavy lashes, they never fly away and you'll feel like no one wants to grant your wishes.)

 

I taught my kids the same thing, so when one of their extremely long and curvy eyelashes fall to their cheeks, I hold it out to them, and watch them close their eyes and mumble a silent wish. It used to take them forever to think of a wish, but now their mouths start moving in silent prayer as soon as they close their eyes. I've told them they can't tell what they wish for, but I can easily read their lips - "I wish mum will get well again".

 

I still wish upon my own lashes, even though it's silly and childish (I mean honestly - so am I). But I can't think of a wish so quickly. What would be the point of wishing to get well, or live for ages, if something would happen to the boys? As I found out about the cancer, I mourned that I wouldn't get to be an old lady, and ever since then, as my body deteriorates and my joints ache, as I'm going through menopause and deal with less strength and energy - as I'm basically feeling and looking like a little old lady - I've thought to myself that I should be more careful what I wish for. So these days, I close my eyes and I wish for my kids to be happy and healthy. I wish that they will know how loved they are. 

Milo is smelling the white flowers in Hagaparken


Weekend outings

by Hilla Duka - View comments

all my boys by the water

A few weeks ago, following one of Ilir's "I've lived in this country for years and I've still not {insert random experience}" rants, we packed the kids into the car, and headed out to Sigtuna, to go touristing. Being able to just go places as we wanted was one of the main reasons for buying the car, but we haven't really been around that much. Never mind all the romantic ideas I had of going to remote places at our leisure, enjoying hidden gems away from the city, the car is mainly used for transporting kids and groceries. So when Ilir and the kids wanted to go somewhere, I was easily persuaded. Plus, I figured, I could take the camera and get some nice pics of the kids!

Little boathouse in Sigtuna

As we drove there, I realised I hadn't been there before either. We'd planned on going there before Christmas, to see their Christmas market, but time just ran away. We came to a little cafe by the water, which Ilir had looked up and were supposed to serve great waffles. Only the kids didn't want waffles, they wanted ice cream. And I didn't want waffles, I wanted a glass of wine. So Ilir grudgingly ordered one waffle, three ice creams and a glass of wine, all the while mumbling about what a difficult family we made up.

Milo eating ice cream by the water in Sigtuna

 

Jonathan having ice cream by the water in Sigtuna

And for the first time in his life, Jonathan actually couldn't finish his ice cream. He left it on the table where it was soon consumed by this fearless buggers:

fearless birds at the cafe

 

Jacob enjoying an ice cream in the sun

 

After our little fika we went exploring, me with camera in hand, of course. The kids found a tree, and were uncharacteristically happy climbing in it.

 

Jacob and Milo climbing in a tree

Milo posing on a tree branch

All three boys climbing a tree

They were not thrilled as we tried to coax them to leave their tree and go exploring the little town, but eventually let us persuade them as we started mentioning an old ruin, quite possibly haunted and very old.

Milo with a map to the ruin in Sigtuna

Milo found a map, and the kids started finding their way to the ruin. As none of us really knew where to go, it was quite fun to task the youngest member of our family with the important job of finding our way. He took it most seriously too.

The kids following the map to find the ruin in Sigtuna

No, this wasn't it. It was however a spot where the kids read "Jaguar" on one of the cars, and decided to consult the map to see if there was a zoo nearby.

Exploring quaint little houses in Sigtuna

Both the kids and Ilir fell a bit in love with the cute houses on the way, and eventually forgot about finding old ruins.

 

By the time we found the ruin, I was too tired to go exploring, and the kids had kind of lost their interest and wanted to go play football instead.

views of Sigtuna in the spring

After playing with the ball for a while we decided on a second fika. Partly because I was tired and the kids needed something to eat and partly because, well - why not?

Jacob having fika

Jonathan enjoying a homemade strawberry drink

And then, the kids high on sugary drinks and sweets and us equally pumped full of caffeine, we headed back to the car, happy and tired.

Ilir happy in the sun


Unforeseen blessings

by Hilla Duka - View comments

white flowers blooming on Pear tree

Though I had a bunch of posts planned (mostly photo bombs of lovely escapes during the long weekends lately) this day could not go unmarked. Today was the day we (as in my physiotherapist) found a way to lessen the pain.

 

As a rule, I don't want people to know how much pain I'm in, partly because I'm not good at being weak and partly because it doesn't mean the same to me as it does to others. As a result, very few people, even amongst those closest to me have seen the damage the constant pain from my metastases in the skeleton cause me, and to none but the nurses I have admitted the extent of the pain. Usually, as I'd meet a new nurse they'd ask me to estimate how much pain I'm in, from zero to ten, and I'd estimate about a seven. They'd be shocked, and tell me that wasn't ok, and I'd explain that we were trying different medications, but that we were stuck, since I don't want to take more morphine than I do, and the other things don't work. I'd resigned myself to always being in more or less pain. I'd come to accept that I was walking with halting, small steps and that my back always, always hurt.

 

Until today. Enter my lovely physiotherapist Ida, who to her credit never gave up, kept insisting that we'd find a way to deal with the pain, and today showed up with a TENS machine. TENS, which I refused point blank when giving birth, has turned out to be my lifesaver. As she put the pads on my back, I immediately felt the pain leave my body, at once I could see how this would change my life. The pain I've learned to live with was gone, and in less than an hour I could walk around more freely and with greater ease than I have in months. I'm still in shock, but so happy and grateful!