Showing blog posts tagged with: being a family

The art of living

by Hilla Duka - View comments

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In June 2014, my life changed forever. I finally got to see a doctor who took all my strange symptoms seriously, examined my breast and my swollen lymph nodes, and who answered me gently, but made it clear that cancer was a real risk. The next day, after I had left some blood samples, a doctor called me and ordered me to go to the emergency to get a blood transfusion. As my doctor’s office and the emergency didn’t have the same data system, my doctor’s office had faxed my papers, and as I signed in to the emergency room, I was given those papers, to give to the doctor I would see. Naturally I checked them, and from the statement and values it was clear to me that I had cancer. The next day, I was told that it had spread to my lymph nodes, and a week later that it was also found in my skeleton and bone marrow, meaning that it was stage four cancer, with no way of ever being cured from it.

 

Since then, so much of what it is that I’m coming to terms with, is a question of learning how to live with death as a part of life. This is not something we’re forced to do in this day and age, and learning how to is alien and stressing and strange. My reality is that the best I can hope for is that my body can manage all ten chemos now, and that the cancer cells can't, and then… Well, yes, then it’s the question of what then. Basically, after that, it’s living with death around the corner. Even if (or when) I manage to get through all ten treatments, and they give me the amazing news that they can find No Evidence of Disease (NED), the rest of my life will be spent worrying about some lump I’m feeling or a pain in the side or whatnot. I’ll go on checkups, and when I get all clear and they tell me they can’t find anything, I’ll celebrate. And then the next day I’ll start worrying about the next checkup, the next lump, until one day they tell me they can find new spreadings. Coming to terms with this kind of future is taxing and difficult and horrific, and is not something I would wish upon anyone.

 

I’ve done my fair share of trying to negotiate with this unarmed weapon pointing at me, hell - I’ve probably done most peoples share of that. I will willingly, gladly, accept this future as long as there is a future and it’s long, but simply accepting it isn’t the same as understanding what it will mean. It’s a bit like when parents tell someone who doesn’t have kids that they’re tired, and that person goes ‘Yeah, I totally understand’. They don’t, because you can’t unless you’ve been there. It’s not that they don’t want to understand, it’s just that unless you’ve stood there with the baby that just won't stop screaming unless you carry it and rock it at exactly the right pace, while you’re legs are aching and you’re ready to fall asleep standing up, indeed walking around, for the fifth night in a row, you really can’t get it. I think it’s the same now. It’s like I’m standing on one side looking into this thing that will hopefully be my future, and trying hard to accept it and understand what it will be like, only I can’t really understand it yet, because I’m not living through it yet. Almost, but not really yet. One leg is there, and the other is still standing in chemo-reality.

 

But as they say, hope is the last thing that leaves you, and as humans we must have something, that is just maybe out of reach but not entirely, to hope for. And as I’m not religious I can’t really hope for salvation or heaven, and I’m not really interested in eternal peace anyway. The only thing I can hope for is more time, more future. So it stands to reason that a lot of the machinations of my brain will therefore investigate what kind of future I can hope for, if all goes well. It turns out, even in the best outcome of this I have to accept death, as part of my new life.

 

Ironically, I’m actually way better at living since I found out I’m dying. I mean, not right now, and in some sense we’re all dying, but you get the idea. I’m so much better at life, when life also involves death. I’m better at embracing my feelings, I’m better at being grateful, I’m more conscious of the sort of thoughts I allow into my head, and whether they’re worthy thoughts or not. I’m better at enjoying the here-and-now moments, and I’m so much more grateful. Before, I had a good job, decent money and great friends and family, and while I did appreciate every bit of it, I think in some ways I felt entitled to it. It was due to me, as a result of who I was, of what I did.

 

Now, as I’ve struggled to understand how wholly unfair life actually is and that there really isn’t anything you can do about it, whether or not I deserve something is completely unimportant, because you don’t actually get the things you deserve. In comes the gratitude. Yes, I may have cancer and it will change everything about my day to day life and my future, and my death, and it’s not fair in any way, but it’s just part of the portion I’ve been served. I’ve also been given incredible kids, a wonderful husband, loving family and friends, great opportunities to do amazing things… The list goes on and on.


I’ve had to give up basically everything that I was, everything that I thought defined me, but in return I’ve gotten something back. It may not be a fair bargain, but I’m so not left empty-handed in this. If the price I’m paying for living is a life with death as a participant, I’m ok with that.


Squandering the day

by Hilla Duka - View comments

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There’s no beating around the bush with it - not working is really hard for me. Work has always been such a big part of my life, when I was a stay at home mum it drove me insane, and then I had babies and toddlers all over the house. It drove me so much round the bend, I ended up starting my own company during Milos infancy. Needless to say, it’s been more than a little difficult learning to be on sick leave. And as basically all of my friends work full time and have careers of their own, when we meet up, the question always comes up - Really, what do you do all day??

 

Honestly, not much, but maybe more than one would expect. I say good bye to the kids and Ilir in the morning (he gets them up and dressed and fed since I’m still not a morning person - that much hasn’t changed), and then I clean up the house. I’ve usually cleared it a bit at night, but somehow the morning rituals seem to just completely clutter the house again. I reason that if I can start the day by getting it nice looking around me, I’ll have started on a good note, and it will bode well for the day to come. It’s become a bit of an obsession - I reason that the day I die will not start with me cleaning and making all the beds, so if I do this every day, I’ll ward off the grim reaper, or something to that extent. Plus, since I’m now spending so much time at home, it only makes sense to keep my surroundings nice and tidy. As a result, our home has never looked nicer.

 

I usually make time for unpleasantness during the day, be they planned or out of the blue. As I’ve written several times before, I need to make room for the horrible thoughts less they consume me, so (I know this will shock anyone who knows me), I do some guided meditations, and let all the sadness come out. Better that than the alternative - panic attacks. I can honestly say that I’ve never cried this much in my entire life, and that includes the pregnancies with their hormonal roller coaster rides.

 

I try to learn stuff, I have a long to-do list with stuff that I want to learn how to do for this site, but basically anything I didn't know will do. Today I learned that if you don’t have eyelashes or eyebrows, you really shouldn’t just put soap on your face and leave it there for a bit. It will sort of just slope down into your eyes. Bet you didn’t know that?

 

I read a lot. Like, loads. Biographies mainly, but since my attention span sometimes, depending on where I am in treatment, is that of a goldfish, I often just resort to social media… I know, it’s sad. I’ve taken to putting on music when I’m alone around the house, not really the things I used to listen to, but mainly Chopin. It’s kind of soothing and doesn’t really demand very much from me, and it’s still not boring. I'm basically like this little old lady walking around with stiff joints fluffing pillows and listening to classical music. But with wine. 

 

The thing is, I don’t really have that much energy. So if I manage to go out to meet someone for lunch, or go for a walk or fix some snacks for when the kids get home, for me that’s a good day, a day of accomplishment. Life has become so very small. And as I try to remind myself, my main job right now is to go through treatment and take care of myself as much as I can. Well, I try to remind myself. It's probably a good thing people around me do it too. 


Fair is fair - right?

by Hilla Duka - View comments

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That’s what we teach our kids. Either all you gets ice cream, or none of you get ice cream. If he got to play on the computer then your turn will come. Because fair is fair. And when they lash out at us and through tantrums because something's not fair, we do our best to make it fair. If everyone in your class really does have a cell phone then maybe I should get you one. But life isn’t fair, not even in the slightest. Right now, I’m trying so much not to let my kids see how hard I’m fighting to give them something they’ve never even thought they would not have - me.

 

Fair isn’t fair, we’re all born with different preconditions, different potentials, different challenges. And for some of us, life throws a lot, while for others it seems more of a smooth sailing. But even I - at the age of thirty five, will break down in tears and rage at the world about how unfair it is. And it’s true, it is. Breast cancer is like a game of russian roulette - it strikes out of nowhere, and it doesn’t care that you’re young, that you have kids that need you, that you’re kind of healthy. It’s not fair, but it’s life, and the only thing we can really do is deal with what life throws at us, stop whining that it isn’t fair, and get on with things. Maybe that’s what we should be teaching our kids instead?

 

I try very hard to believe with all that’s in me, that I will be the miracle patient. That I’ll go into remission, and just stay there, for years and years. And that then there will come a way to kill metastases: cancer won’t be incurable anymore, and I’ll go on to become a little old lady. I want that scenario to be true. But I also know that that might not be the case, that indeed it isn’t the likely case at all. And if that’s not going to happen, then I want to have made the best of the time I had. I want to have been the best me I could possibly be. Actually, I want that even if I get to be a little old lady.

 

I want to have left a mark, to have done some good. And so I start with myself, and I tell myself not to mope around that life isn’t fair, but to do something instead. I watch myself for those unworthy thoughts that sometimes creep into my head, and I work at being a better, nicer, kinder person. If this whole trip doesn’t go the way I want it to, I want my kids to remember, if not my voice or what I looked like, then the sound of me laughing, the feeling of me hugging them, how I would always tell them how proud I am of them. I want them to know that I worked at being a better person, and that this is a legacy I would like them to continue in their own lives. I want them to know how sacred a life is, and how I fought to stay with them.

 

Fair is not fair, but no-one knows the future. Maybe I will be that miracle patient. Maybe I won’t. One thing I do know, and that is that this whole experience has changed me, and I think for the better. I believe I’m a nicer person now than before I got the diagnosis, and that’s worth something, to me. Life may not be fair, and maybe we’d do well to teach our children that, rather than shield them from it all. But life will hand you good things and bad, and if we learn to take the punches when they come, maybe we can enjoy the good turns better, when they come? Because they do come.

 

The picture above is taken at Gröna Lund earlier this summer, before we knew anything about cancer, and the challenges facing us. Just a simple, beautiful day with the kids, all of us happy and carefree...

 

Back to school

by Hilla Duka - View comments

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Just as everything must begin somewhere, so everything must come to an end, and now our summer has too. The kids are back in school, Ilir’s back at work, and I must start to face my new life of being on sick leave, rather than pretend I’m on some sort of extended holiday. While everyone was off it was one thing, I could hide behind the beautiful weather and having the kids around. I got wrapped up in trying to give them some sort of family holiday that they would enjoy, rather than actually accept this new reality of mine. Now I can’t really do that anymore, and it’s painful, but necessary to accept, to face life head-on.  

 

I keep thinking, maybe I can take something up? Like crocheting, or cooking or… god knows what. It’s hard to think of myself as not being useful, but I know that most likely I wont take up crocheting or cooking, or anything else. I can’t walk the kids to or from school as it’s too far for me on most days. The truth is, there really isn’t much I could do. Oh but that’s probably not true, I’m making up a sad story that features me as a victim, and telling it to myself. How the brain loves a bit of drama, and being the victim is quite seductive. I mustn't fall into that trap. Ok, maybe I wont be taking up crocheting - my fingers are stiff and aching from the side effects of chemo, and writing on a keyboard is about all I can manage. Still, I can do other things. Indeed, I must do other things, I must keep myself busy as much as I can, and not drift into the temptation of wallowing in self pity.

 

Seeing everyone off this morning was painful, but it’s a sort of pain I’m grateful for. It was me facing reality rather than pretending, which I value and appreciate. The reality is that I feel quite lost without my work, I feel as if I have no real place in the world. I miss both my job and my colleagues, but most of all, I miss the person I am when I’m working. I miss being an active parent in my children’s lives, I miss a life where I worried about putting myself together in the morning and weather or not I had a dress ready for the day. I miss being frustrated with my hair for not cooperating with me… But these are feelings I must face, without self pity, and accept and then move forwards. By pretending they don’t exist, I give them so much more power, and without really noticing, I feel sorry for myself. The brain might love a bit of drama and victimising oneself, but no good will come of it, I’ve seen it (and criticised it) in others too many times.

 

School started yesterday for the boys, finally all three of them are together in one place again. After every summer, the school starts with a speech in the yard, and some ice cream for the kids, and parents present. Last year I had forgotten, and thought it was an ordinary day at school, so I had work planned and ended up standing there quite stressed and without a good plan for what to do with the kids. This year, I was prepared and present, ready to really be there for my kids. Only to be facing each of their teachers, looking at me with sad, empathic eyes, asking me how I was bearing up, and telling me I looked quite well, you know - all things considered. I wasn’t actually a parent there after all, I was a cancer patient, and I hated it. One teacher reassured me that the kids wouldn’t have to talk about their summer - naturally she thought it had been horrid and that he wouldn’t want to talk about it. And I thought “But he’s had a lovely summer, he wants to tell you all about it!”... It’ll take some getting used to, being seen as just the cancer and not me as a parent, but ironically, if I want to be an active parent I must get used to it and not allow it to push me away from being part of their school life.

 

Married

by Hilla Duka - View comments

Wedded

Yesterday, on a high overlooking the entire city, I married my best friend, the steadfast rock who's always been there for me, the love of my life, and the father of my children. In a simple ceremony marked only by love and respect, with family and beloved, supportive friends around us, we became husband and wife, and I know that this we will remain for all of my days. 

I'm so grateful to everyone who took time to come and celebrate with us, making it exactly as special and still relaxed as I had hoped. It was an amazing day. And to my friend Cattis, without whom all of these ideas about getting married would still just remain ideas. When I found out about the cancer, Ilir asked me to marry him. When we started planning, all we could really come up with was that we would like a small ceremony, in a very relaxed way, having some champagne with our loved ones. Since I can't plan far in advance as I have no way of knowing how I will feel in six or so months, we knew that it would have to be short notice. This meant we couldn't simply book the next available time at the registry office, and as I am a non believing Jew and Ilir is a non believing Muslim, finding someone prepared to marry us seemed more than difficult. Until Cattis came in, found a lovely minister who didn't have a problem marrying such a religiously strange couple as us, and also promised to work around Jonathan's very harsh opinions on mentions of God or Jesus. (I think I've mentioned that before? While I'm somewhat of a religious carnivore - devouring all but believing in nothing, Jonathan has very strong opinions about especially Jesus. I think it stems from going with school to church before Christmas, where the priest told the story of Jesus as if it was fact, and Jonathan stood up, pointing fingers at the priest and calling: You can't know that's what happened, it was over two thousand years ago, YOU weren't there!) Thankfully, this very open minded minister didn't have a problem working around all of this, and Jonathan, whilst initially sceptic, soon warmed to him and played and laughed with him after the ceremony. 

My lovely friends from work read this poem, which brought tears to my eyes and joy to my heart (chemo brain is making me mushy and sentimental and emotional...):

När jag står på bergets topp

När jag går i den djupaste dal

Finns det inget på denna jord

Som jag inte kan klara av 

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt 

När dom vänder mig ryggen

När människor blir små

När vägen är mörk

Ska jag fortsätta gå

För med dig är jag modig

Jag är den jag vill va'

Och hur det än blir nu

Är allt som det ska

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt

And then we were done, and after some champagne we went down to find some grass and some shade and had a picnic. It was exactly the sort of simple, relaxed day I had hoped for, and though I was sad that some of my friends and loved ones couldn't make it, we toasted to absent friends, we laughed, and it was a wonderful day. I hope it will be a day the kids will always remember. I know I will. 

 

And today is my birthday, I'm turning 35. A few years ago I invented IHAD (International Hilla Appreciation Day), so my birthday is usually a day of drop-by visitors having some bubbles and toasting me and telling me how wonderful I am, rather than the cake, gifts and off-key happy birthday songs you'd normally have. Celebrations are so important. At every chance, every birthday, happy turn, achievement, at every piece of good news, we could all do with a bit more celebrating. God knows we grieve enough. 


Not football

by Hilla Duka - View comments

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I had this post planned out in my head. It was about football. Basically, some specific and in my opinion helpful tips that would in general improve the game. It was a cheery and trying-to-be-funny post. That's not what I'm writing today. Today, it'll just be a sad and depressing rant / up-to-date since I don't feel witty or funny or anything positive right now. The tests came back, and the cancer has spread to the bone marrow and to the skeleton. I was so busy staying positive, that wasn't even an option I had considered, and it's just left me devastated, in complete and utter shock. 

 

I wake up in the morning, and the tumors in my neck hurt (a lot) and the metastases in my skeleton, mainly in my lower back, hurt (a lot). As I wake up, there is no longer that brief moment of pause when I still think everything is normal, and then it hits me that this is now my life. I wake up now, and I know it's bad. It still kicks me in the groin, but it's not the completely unexpected kick it was at first. I can't even get a massage, because apparently, everything that's good for me is also good for the cancer. I'm wondering if smoking or getting stoned (which by all accounts should count as bad for me), might kick the cancer a bit? I'd be willing to chip in, you know, for the general good and all. As it is, I can do a bit of yoga, and Ilir is making me smoothies with icky stuff like wheat grass, spirulina and such in them. 

 

My blood values went up after I had my blood transfusion, from 70 to 95, and then a few days later all the way to 99 (in spite of my body's brilliant idea that the day after the blood transfusion was the best day to have my period), so hopefully I wont need another blood transfusion before I start chemo. (Normal people have an HB of between 130-175, so all of this still counts as severely anemic.) 

 

The plan now is to start chemo next week, then do a series of hopefully ten treatments, and - fingers crossed! - watch all the tumors in my body shrink down or disappear, and then keep me on anti hormonal treatment and keep our fingers crossed that the cancer cells don't decide to start growing again. Which they will at one point, but my plan is also to stay extremely positive that some kind of wonder cure that can kill skeletal metastases will develop, if I can just keep it together that long. The thing is, no matter how much I try to focus on this positive image, my mind keeps returning to the much less happy scenario of well... I'm sure you get the picture. 

 

It hurts so bad that my kids will have to watch me be ill, that they need to watch me be weak and worry about me. So far, I've told them I'm sick and that the illness is called cancer. I've told them that I'm not working right now, and that I'll never be completely well again. I so, so, so much don't want to have to tell them any more than that. We know that the cancer is hormone receptive, which is at least one good thing in the midst of a million bad ones, as it gives a better chance of the chemo working. Still, the fact that it's in my bone marrow and in my skeleton means what it means. 

 

I hate that I have to wait for treatment. I hate that first I had to wait one week for a conference, which turned out to be just a meeting, since they don't see any point in surgery, and now I have to wait another week and a half, during which the cancer is spreading and wreaking havoc in my body. I know that I'll be unwell when the treatment starts, but I'd rather have that than this wait. I need to fight, and right now I'm just holding my breath. 

 

I haven't had the energy to reply to all of the wonderfully kind comments, texts, messages that you've all sent me, but I really, really appreciate them. Thank you all of my sweet colleagues and friends and family members from far away who've taken the time to write! I miss normality, I miss work, I miss my life. It's so hard to comprehend, that a few weeks ago I was a bit concerned about a weirdness in my breast, and annoyed as hell that I was so out of shape and often got sick. It's just a few weeks ago, but it's another life, and I miss it badly.

 

Now, my best positive thought is starting chemo and then being able to see how the larger tumors are shrinking. 

 

</rant>


Happy holidays

by Hilla Duka - View comments

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I haven't really been writing for a while, as usual things have been a bit mad... My last trip to the UK was disappointing in the way that I came down with tonsillitis. Spending any amount of time in a hotel room is boring, but spending it shivering under the duvet, hallucinating and with no strength even to get up and get a cup of tea really sucks. I was able to attend the two events I meant to, but not much more. This time I stayed at Premier Inn in Old Street. For being a three star hotel, I should be more kind to it, after all it was clean and big enough to open the door fully, but honestly it was a horrible stay. My room lay next to a construction site, and 5 am they started the noise. Also, no roomservice when confined to bed is really not ideal. It was close to the PR show, but next time I'll stay at my usual hotel and brave the morning traveling.

Since I've been back I've been pretty much occupied with trying to make Christmas at home. The kids have decided that we are to have a full blown Christmas at home, complete with a tree and all. As this is not really something I'm well acquainted with it's taking some efforts, to say the lease, but thankfully I've been getting helpful tips from people at work. So we've been making gingerbread cookies, decorated a tree and whatnot. Presents are under the tree, mincemeat cookies in the oven. The kids are sleeping peacefully in their beds, and for the fist time I'm starting to get a bit of a Christmas feeling. It's nice, sort of.