Showing blog posts tagged with: life and other questions

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. 


Feel the fear - and do it anyway

by Hilla Duka - View comments

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So much of what I do these days, in manage my fears. Not just fears and anxiety about the big things, but the little ones as well. Small tasks, that before would have been so natural I didn’t even think about them, have become mountains to climb. The thing is, all of us feel this way at times. Small or big, a large part of living is to manage your fears. To feel the fear, and do it anyway.

 

A few days ago I went back to my workplace for the first time in over two months. The last time I set foot there, was when I came back after lunch to grab my laptop, texting my boss to tell her I wouldn’t be back that day as I had to get a blood transfusion. And strangely, I was so scared what it would be like to be back. It was something I used to do every single day of the week, going in to the office, not just for fika like I did this time, but for the full day. But now the thought of being back frightened me. The idea of seeing everyone again frightened me, made me nervous. What would it be like? But here’s the thing: I pulled myself together, went off, and it was lovely. I got to see so many people I’ve missed, and it felt so good to be back, even just for a few hours. That’s the thing with fears - when you face them, and just get on with things, they really don’t hold much weight.

 

Of course, sometimes they do, but what I’ve found is that the what-if’s are much more dangerous than the things you’re actually afraid of. I have only fragmental memories of the time I spent in hospital when I found out I have cancer. Mostly, I remember lying there in the middle of the night, alone and crying, because of my fears. That was actually the worse bit. Worse than when they told me they found cancer in my lymph nodes. Worse than when they told me they found it in my blood and skeleton. Worst of all was lying in a ward, alone except for two other patients. The what-if’s were the worst.

 

A few days ago I got a letter, telling me that I had an appointment for a CT scan of my lungs and stomach. It reduced me to tears, I completely broke down because of it, and the what-if’s started wreaking havoc inside of me. Thankfully, my wonderful brother was there at the time, and could talk me out of it before I had a complete mental breakdown, but it made me realise that this is what I have in front of me, for the rest of my life. All those unhelpful thoughts, breaking out for every new appointment, every checkup. Because even if it’s completely unrealistic that they should find that the cancer has spread now, in the midst of chemo, the truth is that one day they will. And, in all honesty, it was completely unrealistic to suspect that I would have breast cancer in the first place. I’m young, exercised (well, sort of) and had no history of breast cancer in the family. So unrealistic to me does not mean that it won’t happen to me. Not anymore. And so the fears go off. What if they found that it’s spread? What if the treatment isn’t working on the metastases? What if… But the thing is, you can’t be ruled by fear, that’s no life at all. And so we feel the fear, small or big, imagined or real, and then we get on with it anyway.

 

When our kids are scared to do something, we tell them not to be afraid. When Milo was scared of starting school, I was about to do the same. To tell him that there was nothing to be scared of, that everything would be fine. But I stopped myself, and realised that his fears are just the same as my own. And I can’t tell him everything will be fine, because I don’t know that. So instead, we talked through his fears, and came up with a plan what we would do in case they came true, and by the end of that conversation, he was still scared, but he was prepared to do it anyway. And in case any of those fears should come true, he has a plan how to deal with it.

 

At my therapists, I learned that anxiety is not a feeling. It’s a reaction to disregarded feelings, feelings pushed away and refused the space they wanted to take. In the same way, I believe fear is not a feeling - it’s a reflex, a fight-or-flight kind of thing, a reaction to feelings. And if you give those feelings the time and attention that they need, then the fear doesn’t hold such a strong grip on you anymore. Then you can feel the fear, and do it anyway.

 

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.

 

The origin of things

by Hilla Duka - View comments

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Everything begins somewhere, though it’s very often not too clear where that is.

 

For me, I could say that it began with a phone call  on my way to lunch. That phone call, where an unknown doctor told me to get myself to the emergency room to get a blood transfusion, certainly did change everything.

 

Or I can go back a day or so, to the meeting with another doctor, whom I asked, after having gone through all my symptoms, “How much of this would be explained, if the breast is cancerous?” and who looked at me with those sad, kind of empathic-but-not-really eyes that doctors save for bad news, and answered very simply “Everything”. That shook me, and it was by any standard, the start of things.

 

But I can go back even further, to an evening in Berlin on a work-trip, where I slipped on a patch of ice, tore of a ligament and dislocated my knee. That was the start of my downfall, physically, though I already had the cancer in my body, unknowingly. The adjustments I had to make because of my knee allowed the symptoms to hide for a while longer. Just a few months, but no one knows what difference finding it a few months early could have made. Perhaps nothing, but perhaps something. We’ll never know, and though it’s pointless to wonder about it, that doesn’t seem to stop me.

 

And even further back, at some unknown point, when in my breast a cell or two broke loose and started forming the beginning of a tumour. I have very little of an idea when that was, the doctor tells me most likely it happened somewhere around three years ago. I think back, trying to picture what I was doing three years ago, wondering when it happened. Again, pointless, but sometimes I find myself pondering on it as if obsessed, quite unable to stop.

 

It’s so hard to understand, that it is in my breasts, which nurtured my children from the day they were born, that the events that will one day take my life started. I think that’s one of the hardest things to take in with breast cancer: how can the very parts of me that gave life to my children be the same thing that threatens my own? That threatens those very same childrens right to their mother?

 

What I’ve learnt is that these thoughts and questions, unhelpful as they may be, demand space. They demand to be thought. The only way I can put a smile on my face, and enjoy the day that is given, is by also making time to feel the sadness, think the horrible thoughts, have a good cry and admit to myself my fears and worries. Then I can leave it behind. That way, anxiety doesn’t consume me, the panic attacks stay away, and (by the help of a sleeping pill), I can sleep through the night. That way, I can enjoy what I have, and be grateful for it.

 

Everything begins somewhere, even gratitude, joy, and the ability to appreciate each day have to come from something. For me, they come from making time to accept all the things that aren’t perfect.

 

Celebrating and commemorating

by Hilla Duka - View comments

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My lovely little Milo - not so little anymore, is turning six today, so obviously we have major reason for celebrating! He’s still not speaking clearly, and the baby curls still fall in lovely little ringlets around his shoulders and down his back. His amazingly long and curly eyelashes hit nearly upon his eyebrows, and when he smiles, my heart misses a beat. He’s funny and charming and impossibly headstrong, and clever and inventive as well. He’s at that stage where he’s still a bit of a small boy, and at the same time growing into a big boy with big ideas.  I’m so unbelievably proud of him - of all my boys of course, but today is Milo’s day.

 

Yesterday would have been my grandmother’s birthday, she would have been 93 but passed away five years ago. I don’t mark her day of passing, but her birthday instead. I was very close to her, though I probably felt closer to her than she did to me - after all she had many other grandchildren, but my other grandparents were in Israel and I didn’t see them often or talk to them often. Being with grandmother was a refuge from everyday life. I loved the freedom of being with her, she just accepted me the way I was, and it  was a simple and respectful togetherness - I accepted that there were things she wouldn’t talk to me about, and she did me the same turn. Instead, she taught me cooking, baking, sewing and crocheting. And while we worked, she told me little stories from her childhood, that became little treasures for me. I’d learnt not to ask myself, as there was no knowing what she wanted to share and not, but whenever she would share a small bit, I sat listening with rapt attention, savoring every word. I need to write those stories down for the kids for the future.

 

Even when I was quite young, I don’t think I could have been more than ten, my grandmother started talking about her impending death. Not in a morbid way at all, I think she was just trying to prepare me for a time when she wouldn’t be there. It was just small things, like going for a stroll in the spring and her wondering if she would be here to see next spring. After all, she’d already said goodbye to most of her siblings, so wondering would be natural I suppose. The last time we spoke before she died, she told me “It’s quite alright, I’m more than willing to go now”. When my kids went through the phase of worrying about death, that’s what I told them. “People go when it’s time for them to go - when they’re ready” I hope that’s true, because then I’ll be around for a long time. I’m not anywhere near ready to go, not any time soon! I want to raise my kids, see them grow up into teenagers and adolescents and grown ups, find their person and maybe have kids of their own. I want to grow old.

 

Today, I’m so thankful that I get to be here for Milo’s sixth birthday! I had my third treatment yesterday, so I don’t have tons of energy, but I’m here, and that’s enough. I can cuddle him up, pour kisses on him and touch is soft curls. I can tell him I love him and how proud I am of him, and I get the pleasure of seeing him opening his gifts, hopefully being delighted with them. I get to hear him play with his brothers. All of these things I’m grateful for. Six years ago, he was a healthy, sturdy and absolutely brand new person, and I did as all new parents do - counted his toes and fingers, touched his little button nose and his impossibly soft skin, stared into his blue eyes, thinking he was absolute perfection, and how lucky I was to get to be his mother. That’s what I’m thinking about today - actually what I think about most days now - how lucky I am to get to be their mother.

 

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. 


Bucket lists and expectations

by Hilla Duka - View comments

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Once, the idea of getting old scared me. Then I reconciled myself with it - thinking it happens to everyone. Getting old is something we've come to expect, we think of living until we're ninety, or at the very least eighty, as a right, as default. The thing is, it's not. Getting old means having hit the jackpot. It's my ultimate hope and goal that I get to grow old, with my loved ones around me. Soon I'm turning 35, and truth be told, I can't know for sure or even expect to turn 40. If I do, I will most likely be the happiest, least neurotic forty year old ever! For now, I'll be happy and grateful for turning 35. For this day, and for, hopefully, tomorrow. 

 

When I turned 25 I was at such peace with my age. I was exactly where I wanted to be, everything on my bucket list neatly checked. When I was about to turn 30, I started thinking about what was on my bucket list at that point, what I wanted to have done and experienced by the time I actually turned 30. It wasn't very much or very thrilling, I wanted a change of career, to drive a forklift truck, a trip to the sun with the kids, to visit my grandmother with all three kids... Might not sound like much, but they were on my bucket list. I did some, but not all, and went quite happily into my thirties. Now I'm about to turn 35, and I don't have a bucket list anymore. I don't wish for money, a better career (I love the one I have, and hope to be able to return to it soon!), I don't need a big house or to travel to remote parts of the world. What I really wish for, is time. Time, and everyday life. Small things like making the kids breakfast, seeing them experience new things, learning, having fun... Saying good night and knowing I'll see them in the morning. Those are the things I wish for most of all, and yet they are the things that we all take for granted. The best bits of everyday life turn into little gems of memories, like beads on a strand, and I gingerly collect them; greedily asking for more.

 

My sweet friends Cattis and Cissi from work, and Cissi's husband Hasse, gave us one of those precious experiences when they offered to take all of us out on their boat. The kids were absolutely thrilled with the idea of going on a boat, visiting a small uninhabited island, roasting marshmallows and going off exploring. It was just magical and beautiful, and seing the kids so happy and excited did wonders for me. More treasured beads for me to collect - the look on my sons faces when they were allowed to try to steer the boat, jumping into the cool water, or simply sitting at the front of the boat as it cut through the water. We climbed into bed way later than their normal bed time, exhausted and sleepy and utterly content.  I'm so, so grateful!