Guilt and gratitude

by Hilla Duka - View comments

Deserted beach

Lead-heavy feet carry me slowly, slowly forwards as I uncurl myself from the bed and force myself to get up. I've slept still, rigid again, and it's hard to force my body to move again. You're already up, running about, making plans and fixing things. Your body is a tool to you - you're so healthy you don't even notice it. I know because I used to be like you, but that was a long time ago now. I smile as I listen to you, you want to go there, do that. I smile, guiltily, and agree - yes, let’s. Guilty, that while you have life driving you forwards, like an unstoppable force of curious exploration, I am pushing my life, like a broken down VolksWagen, and it's all I can do to keep up with you, even though you’ve kindly slowed your steps for me.

 

I take my morning coffee black these days, it helps hide the tears. I’m grateful that it’s still warm outside, that way I can go out to the balcony and have a morning cry in solace, salty tears dripping into my morning coffee, creating ripples on the black, shiny surface. You read the papers with your coffee, shaking your head and muttering at some third world disaster. I no longer read the paper - I can’t face the deaths and the trauma on every page, images haunting me. Instead I open Facebook. The first image that greets me is a woman, I used to know her from work. She’s young and pretty and talented and smart and kind. She has her whole life ahead of her, not behind her. She’s smiling into the camera, and the early morning rays of sun create a halo around her head and I think “Ah, how lovely she is. How happy I am for her, that she’s doing well”. The next post is an update. It’s made by the daughter of the owner of the account, to let us know that her mum passed away quietly during the night. So much for reading Facebook instead of the news, I think. My feed is a mixture of babies and marriages and death. 

 

I take my coffee black these days, and I’m starting to like the salty aftertaste it’s got. And when you pop your head out to the balcony and ask if I want to go to this place that you’ve heard of, I bite my tears back and make myself smile and be grateful that those lines weren’t posted on my account, and I nod, yes, let’s go there, it sounds like fun. And I think that I can ignore the pain in my feet from walking there, the pain in my back from being there instead of lying down, just out of sheer gratefulness that it wasn’t me today, I got this day as well, and I got to spend it with loving, caring people. But the day will go on and I will forget about the mother who died in the early hours of the day. I will forget how grateful I am that it wasn't me. Physical pain isn't the same horrible fear to me as it is to others, but enough pain can blind you, make you unable to think or care or worry. 

 

And so we go to this place, guiltily I smile and nod, try to be interested, to be present. But the time we spend there is too short for you and too much for me, and when I have to beg to go home and you see my facade slipping for a second, you guiltily agree, and smile and through your teeth comes the lie I’ve come to expect, It was enough time, enough energy out of me, and you’re fine, really, you didn’t need to see those things or go any further. As you help me get into the car I see the guilt flash in your eyes, mirroring my own. For a moment it worries me. As we drive back home, tears of pain stinging my eyes and blinding me, I hear the distant sounds of an ambulance. My mantra comes unbidden, I’ve been through this so many times now that reaction is an instinct. Thank god it’s not me this time. Thankyouthankyouthankyouthankyou. I will make more of what I’ve got. I smile at you, and try to erase all traces of sadness and pain from my eyes. As you smile back I know you’ve seen the effort I made, that you try to do the same thing back, and I focus, as hard as I can, on the gratitude I feel, and not the guilt.

 

Q&A from GA

by Hilla Duka - View comments

purple thistle

I think it’s really fun to look at my Analytics, mostly because I like to look through the search terms people have used to find my blog. Some of them make me laugh, others leave me wondering, but of the more coherent ones, along with emails I get from people, I thought I’d do a Q&A series! If there are other things anyone wants to know, feel free to email me at hello@hilladuka.se, or comment below. I’ve divided it in to 3 parts based on what people have searched for and emailed me about: cancer, kids room / living in a small space with kids, and drawing / doodling. I’m starting off with the cancer bits so that we have more fun topics to look forward to!

 

What you need to know when you find out you have cancer

Here’s what I wish - really really really wish - someone could have told me when they told me I have cancer. This is what I would have needed to know to pull myself out of that pitch black grave I fell into as the doctor started using words like malign and spread.

 

You have cancer, and it has spread throughout your body. We have no way of curing it, but that doesn’t mean that we don’t have ways of treating you. Yes, treatment will be tough, but you will get through it. Even if right now it feels as if your life is falling apart, you will be happy again. Even though it feels like you’re already dead, you will go on living and enjoying your life. It won’t be the same as before, but it will be a good and fulfilling life. And yes, this probably means your life will be shorter than average, it probably means you won’t turn ninety, but the future is never written in stone, nothing is for certain. What matters in the end is here and now, and knowing is better than not knowing. Knowing means we can use what we’ve got.

 

 

Should I chose a wig or a scarf during chemo? How do you tie a chemo scarf?

I have no idea what feels right for anyone else, for me I wore a scarf at times and nothing at all at other times, depending on how I felt and how my scalp was. Some days the scalp is just in no shape to be exposed at all, and on those days a scarf was the best option. Even though I tried it towards the end of my chemo, a wig is just not for me. I tried tons of different ways of tying a scarf, and basically found two ways that really worked for me. Tying a scarf when you have no hair and chemo makes you really sensitive can be tricky work. This video shows the first technique I learned and stuck with most of the time. It’s really good because it requires literally no skills at all.

 

The other way that I found works for me is tying a tichel. A tichel is basically a Jewish modest hair covering. It’s different from the Muslim head coverings that I’ve seen in that it doesn’t matter if some hair shows, and it’s not there to cover your neck or any other parts, and I found the way you tie it further away from your face to be far more comfortable than other tying methods, apart from the one I linked above. There are some great tutorials on how to tie a tichel if you're interested, best way is to just search for it on YouTube!

The easiest way to tie a chemo scarf

What is it like to have breast cancer spread to the bone marrow?

Well, it sucks, for one thing. Any kind of spread means that it’s terminal. There’s no way of ever getting well, it’s just a question of how long. Of course I keep hoping for a very, very long time - long enough for someone to find a cure, but my Facebook feed is a mixture of ramblings against the racist party here in Sweden, new babies, weddings, and deaths. On an average, someone in my Facebook friend list dies about once a month. I guess that’s a big difference.

Also, having your cancer spread to your bone marrow means it affects your blood, which also means it affects how you feel. In my case I was extremely anemic, as my blood count was about half of the lowest acceptable value for healthy people. That meant I got extremely tired, dizzy, out of breath… Once you start getting blood transfusions you already feel better, and during an effective chemo, as the cancer cells die your body will start to make more blood, so you’ll not feel as weak. These days, my blood count is rather ok, and it’s not the bone marrow spread that causes me problems but the spread in the skeleton, which has weakened my back.

 

What is it like living with cancer/ terminal cancer?

I still don’t know how to actually describe it, because the whole point of being healthy and not close to death is that you’re really not supposed to understand, I think. It’s like I’m standing with one leg in the normal reality, and one leg in terminal illness. At times I think about what it will be like for my family when I’m gone, and then I'll fill myself with rebellious spirit thinking I’ll screw the cancer and live until there’s a cure.

 

I cry a lot. I have a hard time concentrating sometimes, because the thoughts in my head are so loud I can’t actually focus on what someone’s saying. I can be doing something completely mundane, or extremely important, and in my brain I get this really vivid image of how it's going to be for my kids and my family when I'm gone, and it's at once extremely real and at the same time impossible to take in, abstract and unfeasible. 

 

I’m always in some kind of pain, sometimes I’m in a lot of pain, and it’s been hard finding effective medicines against that. Now, I take 12 hour morphine two times a day, and extra morphine when needed. I also take Ibuprofen to help relieve some of the pain, get acupuncture once a week, and with my therapist I explore ways to mentally control the pain level. But here’s the thing - being in pain doesn’t mean the same thing to me as the patient as it does to those around me. I can feel like “it’s *just* pain”, it might hold me back from things I want to do, but it’s honestly not horrible. However for the people around me, seeing me in pain is horrible, it’s the worst thing they can imagine. So I try not to let it show too much.

 

What I’m trying to say is that, if you’re someone recently diagnosed with terminal cancer and you’re wondering what lies ahead, don't. Take each day as it comes, and just know that the first extreme reaction will pass. You'll not wake up and feel like someone wrenched out your heart as you remember forever. Having cancer will be a part of you, but it won't define you. There will even be moments where you'll forget that you have it. And as with everything in life, there'll be bumps in the road, highs and lows. Practice Mindfulness, and learn to be in the here and now. But then again, I think that's pretty much the answer to everything...

 

What’s it like to go through chemo? How does chemo change you?

I went through ten rounds of chemo, and had three weeks between each turn. For different cancers there are different chemo cocktails, some you have to take every day, others once a week some once every three weeks, it all depends on the type of cancer. But for me this meant two things - I was lucky enough to be able to live at home, and I would have almost two weeks of being kind of well between each turn. The first week is really shitty, and I’d feel like I literally hit rock bottom, and then I’d spend two weeks slowly climbing back up. Each round would be different, so I’d never know how I’d feel, and constantly live in fear that the next round would be impossible to cope with.

 

Another thing that I didn’t know going into chemo, was that the chemo would slow my metabolism, along with the fact that I’d be basically bedridden, and some of the meds I was taking would make me hungry like all the time. In my head I saw really skinny dying people, and I thought it was a good thing I didn’t lose any weight. Instead I put on a stone and a half, which I really didn’t need. The extra weight is close to impossible to lose as things are now, and it’s giving me poor liver values…

 

And, lastly, going through a long period of chemo gives you chemo brain. Chemo brain, this disorganised, new scatterbrain is a bit of a handful, it's strange to adjust and adapt to a new you. But that's true for life after chemo in general - nothing will ever be the same. 

sunset over a harbour in Gotland


The best hummus in the world

by Hilla Duka - View comments

Perfect hummus recipe

As we settled back in after our trip, the kids reaching for the XBOX and computer, I headed to the kitchen. I'm not much of a fix-the-dinner kind of cook, but I love poking around in the kitchen preparing side dishes. I'll put it this way - the salad is always made by someone else, but the dressing? Me. Also, my kids have a serious hummus addiction, so if there is one thing I make sure to have at home it's a fresh batch of home made hummus, and this time I thought I'd share the recipe. It's really easy to make, however it does take a while, so starting the night before is key. Anyway, here's what you need:

2.5 dl dried chickpeas

baking powder

1.25 dl Tahina

​1.25 - 2.5 dl cooking water

2 garlic cloves

cumin

salt

2 lemons

(olive oil, lemon juice, cumin and paprika powder for serving)

Chickpeas in a can

Here's the thing about making hummus - you need to start with dried chick peas. The canned ones just won't do it at all, and you need the cooking water. So, starting the night before, take your chickpeas, rinse them and put them in water. Add about a small tablespoon of baking soda to the water (this will make the peel fall off). Then go to bed and forget all about it.

chickpeas after a night of soaking in water - the perfect hummus recipe

In the morning, the chickpeas will have kind of doubled in volume. Give them a rinse again and change the water their soaking in, to let them soak an hour or so in fresh water. Then rinse again (I know, a lot of rinsing!) and add them to a big pot to cook. Cook for about an hour, or until the chickpeas sort of fall apart if you press them softly. During the cooking, skim the surface with one of those frying ladles with a flat surface and a bunch of holes in, know which one I mean? The white froth is something you don't want, and all the empty peels is also good to get rid of. Once cooked, drain the chickpeas while keeping the cooking water.

All the ingredients you need for making the perfect hummus

Put the chickpeas in your food processor, and mash. Let them cool down as you collect the other ingredients. Now pour in about 1.25 dl of cooking water, same amount of Tahina, the juice of two lemons, two garlic cloves, a tablespoon of cumin (which in Swedish in not kummin but Spiskummin, weirdly enough) and a teaspoon of salt. Start the food processor again and mix it all up. The consistency should be way more runny than desired, since it will bind together more once cooled, so if it's not runny enough, just add more of the cooking water. Taste and maybe add some more cumin and salt, and then serve it with olive oil and lemon drizzled over, and powdered with paprika powder and cumin. Finger licking good, and absolutely smooth! It lasts several days in the fridge, though I can't say for sure how many since we always run out before it goes off, but maybe five?

The perfect hummus recipe

And now that there is hummus in the house again, order is restored. Jonathan got feeling and took the opportunity to make cookies, and now it feels like home again. 

 

I hope you'll try this, it really is so good, and close to impossible to get wrong, and healthier than the stuff you buy at the store too, as a little bonus. If you do, let me know how you like it!


Gotland part 1

by Hilla Duka - View comments

dreamy gotland landscape

So upon the good news of No New Growth, we packed our bags and together with my dad, his wife, their dog and my brother headed to Gotland, where we had rented a house for the week. Eight people and a dog did mean some challenges, but now that I'm safely back in my comfy sofa editing photos, I will claim we had a great trip. The weather wasn't great, but that only meant we got to drive around and see some stuff rather than simply drive from beach to beach.

Jacob by the coast of east Gotland

Gotland is of course famous for its Raukar (I don't honestly know if there is an English word for them, but they are sort of formation made of chalk stone) so we made a point to go and see them whenever we could. And as I found out, my kids are very prone to climbing things (especially rocks) and throwing things (rocks, though smaller), which seemed a very suitable activity while amongst the raukar. Here Jacob is exploring the raukar in Ljugarn, the eastern part of Gotland.

Klintehamn harbour by sunset

 


Sunset at Klintehamn, Gotland

The house we rented, though not the little cottage in the woods I had envisioned was situated in Klintehamn, a small town not far from Visby (say maybe 30 minutes by car), with a cute harbor we could walk to at night and watch the sunset from. And it did have a trampoline, and that outdoors/ indoors indifference that is always so typical for houses and impossible to achieve in flats, so kids and dog were happy.

Milo in the backyard of our rented house in Klintehamn, Gotland

As we came in the middle of the so called Stockholm week (when brats from Stockholm invade even more heavily than the rest of the summer, partying pretty much 24/7 and generally just being load and unappologetic) we tried to stay clear of Visby. We went twice though, to pick up some groceries (wine. In the rest of the world wine is a grocery and something you can buy in the supermarket. In Sweden, you have to go to a specific, state controlled shop, and thre are like two of those in Gotland. One is in Visby.) I tried to sneak some pics of how beautiful the little city is (whilst avoiding capturing vomiting Stockholmers on camera). It really is insanely pretty, the soil in Gotland must be so good, wine and roses grow like crazy.

Milo and the roses of Visby, Gotland

Alley in Visby with lots of roses growing on the walls

 

How lovely? Though I feel bad for the people who live in these gorgeous little houses and have crazy tourists misbehaving in their gardens...

 

poppy growing by the side of the road

 

Then in our at this point rather desperate attempt to get away from drunk teenagers and my kids picking up new and inappropriate words from them, we packed up and headed to northern Gotland and Fårö - in my mind, the most stunning, breathtaking part of Gotland.

 

the kids in front of the raukar of east Gotland

 

Raukar there as well, and crystal clear water with fish swimming in it, even by the shore. 

 

swimming in Fårö, Gotland

 

Sudersand, with this amazing sand and long, shallow beach. Even though not warm, the kids were ecstatic.

 

Milo by the beach in Fårö, Gotland

 

And this little man, who's generally quite fearful in the water, could bathe and enjoy himself without worrying as even twenty metres in the water still only came to his waste.

 

Lauters, ruin and restaurant, Fårö Gotland

 

In Fårö we stopped (on our way to see the Fårö raukar, of course) at this little laid back ruin/ restaurant/ chillax place playing reggae music and offering hammocks for resting under the trees. This happened to be my Holiday Goal - lying in a hammock under the trees and feeling salty wind in my face, so naturally I made the most of this, regardless of the fact that the others were quite eager to continue. 


View from the hammock in Fårö, Gotland

 

In our cottage (that we're still very much hoping to buy at the end of the summer) we will have hammocks. Lots and lots of hammocks.

 

And now we're back home, making plans for the rest of the summer. We have almost another month off, which feels amazing and so very luxurious. Maybe we'll rent a little house in the woods last minute, just to really get the feeling? The whole family is quite set on buying a little summer home for ourselves now, but for financial reasons that might have to wait until after the summer, when the prices drop. Right now, the kids are happy enough back with their books, toys, and a stable wifi. I kind of feel the same.


All checked up and ready to go

by Hilla Duka - View comments

pink and yellow roses

So, on Friday I went, butterflies in tummy and all, to see my oncologist and find out the result of the last scan, and was very, VERY, relieved to hear there was no sign of new growth! The metastasis in my skeleton are still there, but nothing new is growing, so now we know that the hormone treatment is actually working for sure, until it stops working (which may sound dumb, but that’s actually how it works - they give you a drug, that keeps the growth at bay, and then at some point, you become immune to the drug, and bad things start to grow… and the real kicker is you have no clue as to how long until you become immune, could be months, could be years.)

 

My liver values on the blood tests where slightly worse, but according to the oncologist that’s explained by the fact that I am, as she put it, a bit on the rounder side, and - again her words - would probably not suffer if I shed a pound or two. Hear hear, doctor. The weight gain is one of the most bothersome bits of the cancer (aside from, you know, the not quite ignorable risk of dying). Aside from looks, it means getting around is heavier, and more difficult, and being physically active is one of the most important things in fighting this horror.

 

And as I raise my glass and say a silent, thankful prayer for good results, I look back on the three months since the last good news, and then ahead to what will hopefully be great news in three months (this is how I live my life now, nice and tidy compartmentalised boxes of three months) and I’m desperately, obsessively, thinking back on the time gone, the time to come: did I use it well enough, could I have been less stressed, raised my voice less with the kids, was I really present? I guess there’s no real answer there, but I’m happy that I’m asking the questions.

 

The three months to come will start to a trip to Gotland with the whole family, and I will make a massive effort to be present, create great, loving memories for the kids and for myself. We’ve actually made some efforts with the whole redecorating / create more space project, and I can’t wait to show it (but, you know, I will - wait I mean, because I’m going to what will hopefully be sunny Gotland right now)!

sunset in the city

Here comes the hard part

by Hilla Duka - View comments

white flower petals on green

Tomorrow (or today, as the clock has already passed that magic, midnight marker and created a brand new day, never seen before) it’s time for my three months check up, and so naturally I’m wide awake, worrying, thinking back…

 

Three months ago, I was given an  “all-clear” checkup. To the best of their abilities, they couldn’t see any growth, and so I was given the gift of three more months. It’s the best news someone in my situation can hope for. Now, as I beg / plead / hope for another three months - for the same news again, I suppose it’s only natural that I look back on my last gift, and try to weigh it out -  did I do something good with that gift? Only I’m not sure. I know I’ve spent time with my kids, and that was time well spent. Yes, I got to do some of the big things, like hear them sing their summer songs with the school choir, and celebrated end of school. I actually took my kids to see Valborg (Walpurgis, with the big bonfires) celebrations, but most of all, I got to cuddle them. I got to hold them when they cried, when they worried and were afraid of dying, I got to be there for them and tell them it would all be alright. I used those three months to help friends, cherish time with my kids and for the first time ever, go on a no-kids trip with my husband. In that sense - time well spent.

 

However I still focus way too much on work. I think about work when I’m not working, and I still answer my work emails at night. The last few months I’ve been so very stressed about work, as  I managed to make the classic mistake of accepting a larger workload than I could actually do well, and that’s really affected me strongly. I don’t handle stress very well with my post-chemo brain, which means I need to get really good at not getting stressed. I haven’t been very good at that. I love my job, and I care what happens, but I need to improve myself here before I can be of help to anyone else. When I was on sick leave, all I wanted was to get back to work. Now that I’m working again, I realise it’s not as easy as that. It’s not just working, it’s working with a purpose, mindfulness at work, if you will.

 

Also, in the back of my head is this notion that I should do something great, for the good of others, and I’m really not doing that. Like, sell all my belongings and work with children in Syria or something. But I’m not, am I? Instead, I trudge along, see my therapist, my physiotherapist, the nurses. I take my medicines, I pray and hope for the best and I try to be thankful for every bloody day that I get. And then when some dull ache in my back won’t go away for days, I break down from the worry and agony of not knowing, of always waiting.

 

If in a week or whenever the results come in, I once again get the all-clear verdict, no sign of growth, how can I take that gift and spend those three months better? How can I make sure, that in the end, those months mattered? Im starting to get that these are questions I need to find a way to answer, if I want my life to have meaning and purpose.


Tomorrow is the easy bit. All I have to do is get a shot up my arm and lie in a machine. Next comes the hard part - waiting for news. And that’s the really fucked up bit - when you have advanced cancer, on some level you always do that - just wait for news and do your best to not completely lose your marbles while waiting.

Milo playing by the fountain


Juggling the square metres

by Hilla Duka - View comments

some of my favourites at home - fifties lamp and old school poster in black

Love the combination of my fifties lamp and old school poster of wheat on black!

It started as we came home from Paris. Filled with inspiration and team-feeling we started trying to clean up the flat after 48 hours of baby sitting. And after about three hours of cleaning and the house not looking any bit better, we sat down for a much needed break, and emergency council. Why was this not working?

 

As I’ve mentioned before, for rather morbid reasons we’ve decided to stay in our tiny flat in the nice area. But with two adults, three quite grown children (not to mention three cats) and a house with an open door policy, it’s getting cramped, crowded and impossible to tidy. It’s not that we’re insanely messy as people, more like we have no place for a lot of things, and as a result, they simply move from one spot to another, and the house just never feels clean.

some of my favourites at home - brass lamp and dr westerlund flower

One of my darlings that I hope not to kill: an old brass lamp standing on some of my favourite books, and a dr westerlund flower from my grandmother (one of the only things I have from her), that smells amazing if you rub the leaves!

Also, we don’t have places for everyone in the living room, resulting in someone (Ilir) sitting on the floor (this is not as cruel as it sounds, as for strange reasons relating to his origin, he’s surprisingly fond of sitting on the floor, but still - I’d prefer having enough seating), and finding a spot to do homework is a nightmare.

 

Before I showed you our kids room solution with a triple bunk bed, and funnily enough those posts of the kids room are the most searched for and visited posts. Anyway, we’re pleased as punch with our kids room makeover, and so after a few futile attempts at quick fixes, we decided to treat the rest of the flat to the same makeover. Our goal for the summer is to make our two bedroom flat into a functional and beautiful home for five, where we’re often up to nine people. It sounds like close to impossible, but then again so did building a functional bed / playroom for three kids, but we managed that one, so I’m hopeful.

some of my favourites at home - snake plant and Ikea Stocksund sofa in dark gray

My favourite plant - a snake plant in a concrete flower pot - and new sofa, an IKEA Stocksund in dark gray (sooo comfy, but only fits three...)

There are no sacred cows here, no inside-the-box thinking allowed, and I’ll (try) to kill my darlings. I boost myself remembering how great the kids room turned out, but then I remember that this time it’s our bedroom, hallway, living room and kitchen. It’s figuring out spaces to eat, play, study, have alone-time and socialise with guests and family. That’s one tall order!

choosing the perfect greige wall colour

Trying to choose the perfect greige wall colour - can you see there are three different grays on that wall?

Anyway, I’m really chuffed we’re trying to stay in our flat, even if it might be a bit of a challenge finding solutions to all the different needs, but hopefully by the end of the summer we’ve made this work, and can start looking for summer houses as a reward! (That we in turn spend most of winter renovating...)