Q&A's on living with cancer.

by Hilla Duka - View comments

Manga girl with lots of cancer questions

From time to time I get questions in the comments here, find them in my Analytics, or via email. Often I can feel like the person really wants to ask but is afraid to. And then there are the people you just think really should have asked someone. So, let's do a cancer Q&A!


Do you want to know about my prognosis? What it's like to loose your hair, how to paint eyebrows when yours are gone, or how to approach a friend or colleague who has cancer? How you find out, side effects of chemo or maybe something completely different? Any question goes!


Post your question in a comment below (you can post anonymously as a guest), or email me at hello at hilladuka.se and I will put together a post with all the answers in about a week or so. I think back to when I found out, I searched everywhere for information about what I had to expect from my future, but even though there were quite a few blogs written by women with advanced cancer, none of them focused on answering the questions I had about what life would be like from now on, and I was full of them! 


Of course it's very different for instance how active you can be and how much pain you're in depending on what kind of cancer you have, and lots of other factors, but there are also lots of similarities, as I've learnt from discussions with people with other types of cancer. And in the end, any answer anyone can give will be their answer - there are very few truths in the world of cancer. 

Interior design as a way of coping with cancer?

by Hilla Duka - View comments

My living room after a year of redecorating

When I was told I have cancer, I thought my life was over, then and there. I wont attempt to describe the first weeks after finding out - you either know because you've gone through it yourself, or you just can't understand, no matter what words I use to explain, and some things just hurt too much to relive, the mind instantly recoils from it.


One of the first things I wanted, that I could really feel I wanted, other than to just not have cancer, was to fix our home. Before the diagnosis I had just started making plans to buy a house; about twice the size of our current flat, a room of their own for each of the children, a garden where we could hang in the summer, Jonathan could grow things... All of that was lost as soon as I found out about the cancer. I had been so ready to walk out of our little flat, and now I just wanted to decorate it - weird right?


I think there were two reasons I took such an interest in decorating our home. Firstly, I've known Ilir for years and years, and while he has lots of great qualities, interior design and decorating aren't it. Not even a little. I guess I just thought that however our home would look when I died (I stayed in the mindset that I was going to kick it any day for a really long time), was going to be how it would always look, so I'd better make sure it looked nice, and was practical.


Also, because I've never had any heirlooms, or inherited furniture of my own, or really anything from my grandparents or from before them, I wanted there to be things in our house - furniture, paintings, whatnot, for my boys to inherit. Rather than mope around and feel sorry for myself that I didn't have anything from the generations before me, I wanted to do something positive with that feeling - take control and create something for my family. And I wanted our home to reflect us, not just be filled with off-the-shelf things, but things we'd made or salvaged, antiques, stuff like that. Very far from the ideals I grew up with, with my architect family, where patterns instantly equalled bad taste.


We'd reached the stage that it was time to through out our old sofa - while it had been heaven when Milo was a baby and I luxuriated in the deep, soft cushions, it was now too small for the five of us, plus lots of company as we always seem to have people over, and the cats had shredded it. I had my eye on these more traditional looking, English sofas - you know the ones with short roll arms, looking like you just want to cuddle up with a cup of tea? Yeah, those. Quite far from where I come from - where everything had to be modern and clean, and have straight lines and light colours.


Really, this whole decorating journey has been one of settling scores with my past, and accepting myself and my own preferences. We looked at pricier ones, but in the end, IKEA won out, the one called Stocksund. It had the right look and feel, and when the cats have scratched the sides, and the kids have spilled things we can't get rid off, we can simply buy a new cover. Also, it was cheap enough that buying two of them to have opposite each other wouldn't break the bank.

Part of our living room IKEA Stocksund sofa and IKEA Vittsjo hacked coffee table

And with our new sofas in place, our old coffee table didn't work. At first I searched the auction houses, but I couldn't find anything close to what I wanted - all the tables were too high or too wide, so we went back to IKEA, and bought a cheap nesting table called Vittsjo. Ilir saw the glass top and looked at me as if I had lost my mind, but I had something different in mind. 

IKEA Vittsjo coffee table hacked with old looking wooden tops

Some plain pine cut to the right sizes, then beaten with chains and screws, a funny looking drill attachment with something resembling very coarse steel wool to get rid of the softest layer of wood, and then a concoction of vinegar and steel wool that I let seep for a few days. Finally I waxed the surface with dark wax, and now we have a table that will really take anything, while it's narrow (45 - 50 cm) enough to fit well between the two sofas. And when the kids grow up they will hopefully have some fun memories of me pounding the wood with chains and concocting awful smelling brews in the kitchen to dye the wood in a natural and non-toxic way. It wont be just another IKEA table, but something kind of unique that we made.

How I made old looking wood with vinegar and steel wool

I'm really happy we put the sofas opposite each other - it suddenly becomes a room for conversation, for spending time together, rather than a place to mindlessly watch TV. I love that I got the old fashioned, comfortable sofas in the dark fabric, and the dark wood to go with it. I love my brass lamps and details (brass was banished when I grew up, the only allowed metal was polished silver), and now when I come home and fall into one of the sofas, I feel comfortable, at ease. I've broken all the unspoken rules of my past, and by doing so I let my home become what I needed it to be, rather than what someone else thinks it should be.

The sofa part of our living room - IKEA Stocksund sofas, brass lamp from House Doctor and IKEA Vittsjo hacked sofa table

Strange how the mind works - I've really only ever had nesting / decorating instincts in two kinds of situations: when I've been pregnant and when I was told I'm dying... But there's a comfort in feeling that our home fills the functions that we need from it, that it's a place I can relax. I guess it's also a way of taking back some of what the cancer took from me - I can't have my house, but I can at least make sure the home we have is as lovely as possible. I can choose to not focus on the negatives, but create positive things to be happy about.

A happy Christmas, again

by Hilla Duka - View comments

Christmas tree all decorated and pretty

And so another Christmas has come, and though it didn’t come easy, a small bit of Christmas spirit came too, mainly thanks to the images from crazy talented Underbara Clara (who lives in the north of Sweden and so is blessed with snow this time of the year). Here in Stockholm snow around Christmas is a rare thing these days, but we try not to talk about it too much, since my kids get very worried about global warming, and though it is tremendously important, now is not a time for them to fret over that.


They’ve had to take in a lot lately, my kids. First it was me, and the bloody cancer. They see me in pain, they know there are so many things I can’t do, they just adjust to it, but it’s there, under the surface, pops up in their nightmares or plays a constant undertone in their anxieties. I hate it, but I force myself to see it. Then there’s been the situation in the world around them, the flood of immigrants running from horrors too awful to try to understand. And though we don’t try to understand, we talk about it, and discuss what we can do. A while back was the terror attack in Paris, and since they've recently been made very aware of Paris, first as Ilir and I went for a weekend getaway, and then as they recently met their Parisian cousin, it hit very close to home. I talk about how the terrorists want to create division and hate, so that people will divide, some will become outsiders, and join the terrorists. I talk about how the only cure is love, compassion, understanding. They nod; it makes sense to them. But they still worry.


I worry too. I feel skinless these days. I worry about the same things as they do, really. The environment, how our government is handling the flood of human beings in need of safety, my health… There’s just this massive sadness inside of me, for myself and my family, for the world and what we’re doing to it. Maybe that’s why it’s been hard to get any kind of Christmas feeling going. Christmas is also the time when I feel the strongest that I really am a minority in Sweden. Born and raised here, I don’t recognise these traditions, I don’t know the songs, they just don’t belong to me. It’s only since the kids wanted it that we’ve been celebrating Christmas, and very much making up our own traditions as we go along.  


Thankfully, a few days before Christmas my sweet friend Li came over with her dog Buddha and together we made gingerbread cookies and had mulled wine and it started to feel a bit like Christmas.

Li and her pug Buddha in front of the christmas tree


The kids baking gingerbread cookies for christmas
And by the 24th, we managed to make Christmas, with a slightly smaller tree than last years enormous one, and less fretting about food and stuff. The kids made and bought presents both for us and for each other, and my dad and his wife came, as well as my mum and my brother and his lovely puppy, and we all joined in some sort of well meaning but slightly awkward togetherness. 
Cheese and bubbles for christmas
Why go all in on Christmas food when there's hardly an item there that we eat? We opted for cheese and biscuits instead, and some bubbles to go with it. Along with dates, pears, and organic grapes, it might be the best Christmas food ever!
Christmas eve together
And by the time the presents were opened, the wine drunk and the mess made, we started to relax and enjoy ourselves. No toys for the kids, as we had decided, but instead instruments, since they’re really into music right now. So with a brand new keyboard and two guitars for the Xbox, they get to play around with making music even though their parents are clueless and can't play any instruments.

off course and astray

by Hilla Duka - View comments

The road forward

I realise it's been so long since I've written, one could easily assume I've stopped. However, that's not the case, it's just that I haven't been in sync with myself. So many things have happened lately, I've felt a bit as if I've lost my bearing, and forgot where I was, and what I was fighting for.


So first and foremost, just to update you who might still look in from time to time - the cancer is not growing, at least as far as the doctors can tell. I'm now twelve months in remission, and so very, very thankful for it. Especially since I've recently come to realise that judging from the blood tests when I was first diagnosed, it was entirely possible that I wouldn't be strong enough to cope with even one chemo treatment, let alone ten consecutive one's. But I did, and I'm still here, and very grateful for it. I still take things day by day, I still focus more on family than anything else, but I've lost my centre, and I need to fight to get back to that calm, centered place where I felt in touch and in tune.


The last few weeks have been mad, I've had surgery on my hand, so underneath a massive bandage there's a scar running across my palm and up on my wrist. Or at least there will be, once the stitches are removed. Then after a short recess for Christmas and New Year's, we're doing the same thing on the other hand. Carpal tunnel syndrome, one of many little reminders of the chemo that has been left in my body... Still, no point in complaining, and I'm happy to have it treated.


And since misery loves company, my middle son Jacob was taken (well, I took him, not as in abducted by aliens) to the emergency room in the middle of the night for appendicitis. It was gut wrenching to see him in pain, to see his eyelids flutter to a close and be ushered from the room. After a torturous 90 minutes he was in recovery, and I sat by his side as he slowly came out of it. It was only 36 hours between going in and coming back home - one appendix shorter. But both he and I are mending well, even though we sometimes forget to be careful enough with our stitched up selves.


I had to return to that, as I was proof reading for embarrassing typos: Being careful with our stitched up selves. How many of us are? We're all broken in some way, be it visible or not. In our thirties, how many of us can honestly say otherwise? And honestly, how often do we take care of ourselves? In fact, we go so far as to take pride in NOT taking care of ourselves! What a crazy thought... And then we wonder why people hit the wall, get depressed, divorced, whatnot. How can it be that it's so, so hard, to just take care of "our stitched up selves"?


Well, I suddenly seem to have a million things to write down and let you know of, but I'll leave it there tonight, and know that I will put together another post soon.

Chapter 36, in which I stop eating, drinking and smoking

by Hilla Duka - View comments

Jonathan, Jacob and Milo - any sacrifice is worth it for them.

A year ago I stopped using any form of nicotine, I cut down my drinking drastically a month ago, and yesterday I went vegan. My 36th year has really just been about health. It’s been about  acknowledging that I need to work to survive.


Isn’t it weird how scared we are to talk about what we’re trying to do. “What if I fail, and then everyone will know I tried and failed!” is at least what goes on in my head. So I only talk about the things I suceed at doing. Well not anymore. This writing was always about being radically honest with myself, so here goes. Maybe I’ll fail completely and be drinking wine and eating cheese next week, but for right now, this is the truth.  


Almost two months ago, following two blood tests showing increasingly bad liver values, I decided to seriously cut down on my drinking. When I was new to life as a cancer patient, I remember how one of the nurses told me, “Have a drink when you feel like it, it’ll help with the chemo brain”, and so whenever I’ve felt like it, I’ve had a drink. Not like I had been drinking obsessively, but I probably had like two or three glasses of wine maybe three times a week?


But my liver values were consistently getting worse, and even though the oncologist claimed it was only because of my weight, and not anything I could do about it, I remembered when I was at uni and there were people who drank so much they started having liver failure, and then they’d have to stay off drinking and their liver values would improve. Maybe the same thing would happen to me to, I reasoned. Also, I’m battling fatigue, (which is way worse than it sounds - it literally means I fall asleep in like less than a minute, and there’s nothing I can do about it) and I thought not drinking would probably help with that too.


Because this was something I wanted to be able to continue doing if it worked, I decided not to stop drinking entirely, but cut down heavily. I would still drink half a glass of red wine on Shabbat, or on a work function/ meeting friends.


It’s been a little over a month, and I feel great. I can’t imagine going back to drinking the way I was in the past, even though I feel really bad I sometimes have to pour out really good wine because it’s gone bad. A small part of my brain looks on as I pour the wine out, amazed and feeling awful for the great tasting wine, but mostly I can’t imagine going back. I drink lemon water, and tea in abundance, and if I’m doing something special or feel like it, I can still have a drink, just a smaller one.


Besides the health benefits, which I still don’t know if I’ll see (haven’t had a blood test since i “stopped” drinking), my fatigue is easier to manage, and I feel better overall. This is the second big change I’ve made healthwise (the first being the stop-nicotine course I did, the Easy way), that I before thought I wouldn’t be able to do. Going through with it not only made me feel better and healthier, but it made me feel empowered in a situation where helplessness is the rule.


And the positive experiences I’ve had so far have empowered me, so much so that I’ve now decided to go vegan. I’ve accepted that because of the cancer and how far it’s progressed, I’m at a point where I fear food. I am literally afraid of food. Sugar, starch, processed, wheat - you name it, I fear it. I don't know which anti-cancer diet to trust, or if they're all nonsense. Nothing is certain, no one knows for sure if sugar, starch, wheat, meat or dairy is harmful, but it’s quite well known that vegetables in abundance is good for you. And I believe that the fear I feel at the possibility that the sugar or starch I eat is feeding the cancer in itself is dangerous for me. I’ve always wanted to go vegan, ever since I decided to not eat meat and fish (I was thirteen, so that makes it… 23 years ago?!) but I just never knew what I would eat instead, I imagined myself nibbling on a carrot or maybe treating myself to salad leaves.


I thought I loved yogurt and cheese too much to give it up. But then again, I used to think I loved snus to much to give it up, and then I quit and have never looked back. I used to think I needed my glass of wine after work, but now I put the kettle on and am just as happy. These experiences have empowered me to try new things that I believe may help me (or at least reduce the harm for me) in my effort to live as long as possible and as well as possible.

Not so peachy

by Hilla Duka - View comments

Deep thoughts and heavy curls (portrait)

You know, when it’s just not so fucking great? What do you do then?


I decided to keep writing this blog after I got the cancer blow, in order to document… the rest, I suppose. No one wants to go unnoticed, or at least to go without leaving your own individual mark. I don’t want someone else to sum up my life with their own words, I don’t want to be subjected to a rewritten history, relegated to the past. So I kept writing, and through writing have been able to keep some sort of sanity throughout the madness that has become my life. I feel as though I’ve been able to regain a lot that the initial cancer blow took from me. Compared to those early days (ok weeks. Fine, months) when I pretty much just felt as if I’d already died I have more than I thought possible.


But then from time to time, it’s just not fucking fine anymore. I deal with chronic pain, less energy than normal people, my own thoughts about death and those that my kids and people around me have, and then I work 50% again, go to the physiotherapist and my regular therapist, and some days I literally cannot get out of bed, and I think that it may be that it is in my nature, indeed in the human nature to strive for more, for better, to improve, but that I just need a break from it all. When meditating is one of the things that stress you out, you know you’re in trouble. My day doesn’t have enough hours, my calendar is full, and the chance I will ever get to see retirement is so slim it’ll be a miracle.


But what do you do when the person you love asks you what you’re thinking and the truth is, you’re trying to picture him finding a new partner after you’re gone? Because here’s the deal, you’re either honest about it, and then you’re the biggest Scrooge ever, or you’re a liar, and then you’re dishonest and all of a sudden, you feel like the loneliest person in the world.


I have no answers to anything. Today is Rosh Hashanah, the Jewish new year, and I think about poor children washing up on the shores, I think about cancer and its horrors, I think about the last in a long row of lovely women I’ve come to know a little bit who passed away today, because there still isn’t a cure out there.


Tomorrow I will put myself back together, I’ll try to be a great mom and a good co worker and a nice wife and all of that. But right now I feel naked and miserable about the state of the world, the state of my own life, the mess to which I've brought three lovely children. I’ll go to bed and pray for a new year filled with more love, and less horrors, and maybe, maybe, some more justice and forgiveness. 



by Hilla Duka - View comments

sunset over the ocean

I’m so lucky, it’s ridiculous. Here I am, with my cancer ridden, broken down body, my fear of leaving my amazing boys, and the more or less constant pain. Oh, and there’s the little detail of the fact that I will most likely die way before my time, and I will still say that I am so lucky it’s ridiculous.

When I found out I have cancer my friends, family and coworkers gathered to offer their sympathies. Mynewsdesk, the amazing company I work for, guaranteed me that I would keep most of my income during sick leave, so that I would not have to worry about money in the middle of all of it. My colleagues in Oslo and in London sent flowers, and baskets full of thoughtful cards and loving gifts, even customers reached out with caring letters, and I don't even have a customer focused position. Acquaintances became friends, and my best friend and the father of my children became my husband. The outpour of love and well wishes was, and continues to be, simply amazing. I received so many messages of hope, love, encouragement, and I was only one person. One person with bad luck and a limited future. So you see, I really am so very, very fortunate.


Others are running for their lives, fighting unseen and unheard, drowning in waves of indifference, their future washed away, simply for having the bad luck of being born in the wrong place. The images are horrible, they are literally the very worst thing imaginable, yet if they lead to a more humane stance towards refugees, if they can elicit compassion and make people understand that we have a moral obligation to help, then perhaps publishing these images are worth it. Because the very simple truth is - it’s about human lives. Human beings are running for their lives, and if that is too hard to understand, if you can’t understand the truth of the now iconic “You have to understand, that no one puts their children in a boat unless the water is safer than the land”, then there is something fundamentally wrong. People are dying on the Mediterranean because we won’t let them take an airplane. Because their homes are war-torn and we’ve stood idly by. The only decent thing to do now is take care of these people. Let them in now and sort out the details later. There are a number of great organisations helping, the Red Cross, Medecins sans Frontieres, or smaller initiatives, like Blogghjälpen, set up by a group of Swedish bloggers and aiming at raising 50 000 SEK for UNHCR. We can all do something to help them help. 


My employer, Mynewsdesk, sent out an email on Friday, with the modest title “An early Christmas present”, letting us know that in answer to the nightmare on the Mediterranean, they’re donating €50 for each of us to the Red Cross, it made me feel so very grateful. Considering how many employees we are, this is a donation of almost €9000 to the Red Cross. Most companies give their employees some form of Christmas presents. In my opinion, a donation is much more valuable and appreciated than some piece of plastic that will lie around unused. Why not deliver your Christmas presents early this year? People are dying, and because of a small child and a horrible picture the world is finally taking notice. Let’s make the most of that momentum, raise as much money as possible, change as many minds as possible, get as many people into safety as possible, now.


I may not be around in twenty years, to face the questions from my kids, see their faces as they ask what I did in face of this humanitarian crisis, but if I am, I will not have to tell them I sat idly by. I will tell them that I did what I could, and that I am proud the company I work for did as well.

Title is a quote from a poem by Warsan Shire. Please take a minute to read it, it is incredibly powerful.